Menopause ... what's that??

It's been a remarkable healing period and I have been able to avoid hot-flashes with the use of an Estraderm .05 patch (Estradiol). I like it because it is "plant based" and I am a bit more comfortable with that. Needless to say, it's working! I had my surgery on the 28th of October and it has been over two weeks and I have been able to hold the hot flashes and night sweats at bay. That is awesome! I would have expected what I experienced from my Lupron shots -- wicked hot flashes and night sweats but they have not happened. So I am a very happy camper.

As I heal from this surgery and work on getting some strengh back I need to also work through the question of "Sarcoid" ... do I or don't I and why was the test positive. I have to wait for my CT of the lungs to rule out "hilar adenopathy". That will probably be the clincher.

It has been a diagnostic and autoimmune labyrinth and it's been a little crazy. Now I have discovered that there were a LOT of contaminants at Ft. McClellan and that the base no longer exists and is a hazard area. There are a lot of autoimmune diseases being attributed to exposure to various toxins down at McClellan and there were a LOT OF THEM. I am in touch with a woman -- Sue Frasier -- who is trying to lead a legislation for Ft. McClellan Vets.

Vets for Justice - Ft. McClellan Legislation Updates

I am on top of it now and just wanting to understand the reasoning or correlation behind my many autoimmune illnesses. I have a twin brother who has NONE of these issues. Understanding will help me. I am fortunate to be service-connected already for MS but it will help me to understand other anomalies in my health.

The Autoimmune Odyssey

I am healing wonderfully from my abdominal surgery and I cannot believe that it has been a little over a week since my surgery. Since that time, I have spent my days moving around and trying to do as much as I can without stressing out my muscles. My pre-op bicycle rides definitely helped me a lot. I thought my right hip pain was gone ... but today the tightness and soreness is back. I am hoping it's just because of healing and overuse.

I spoke with my new MS neuro Dr. Krupa Pandey about various autoimmune blood tests that she ordered. One of them was for Devic's Disease (which came back negative). Another one of three was for Sarcoidosis and is called ACE (the link tells about the test). Mine came back positive. Who knew? Who knows? This is one of those conditions that I know very little about except that it can be chronic and most often affects the lungs.

Dr. Pandey has ordered a CT scan of my lungs with contrast to look at my chest (and I guess the surrounding lymph nodes). Sarcoid can attack any organ and seems kind of mysterious to me. Here's a good pamphlet on the topic:

http://www.stopsarcoidosis.org/sarcoidosis/FSR_bodybroc.pdf

I am waiting for that CT scan script from the doctor's office. I'll be chatting with my Primary Care Doc to see what can be done on the VA side of things and who I need to align with. I also need to make an appointment with my neuro-opthalmologist which is LONG overdue. But I already told Dr. Pandey that my right eye is kind of shot post-surgical and that I have a case of Optic neuritis. It's just something we are keeping an eye on (no pun intended). There is not much to do except wait it out.

My job is to heal at this point ... but I do have to be informed, so that is what I am doing.

Every day is a little bit better than the last and I expect everything to be on the up and up. I can't wait to get back to my cycling and martial arts--but nothing can be done too quickly. I have an 18" incision and stuff on the inside that needs time to heal. I can't go by my old Army addage of: "No Pain, No Gain" ... that does not apply here.

One of my old friends gave me a great idea for a tattoo on my belly since I have no more girlie parts and have had my gallbladder, thyroid, and appendix out as well:

"Parts Dept. Now Closed"

LOL, that was a great one and will keep me busting a stitch for awhile. Thanks for the prayers, prayer works!

Post-Op and Doing Well

I had my abdominal surgery (oopherectomy and appendectomy) and am home healing, keeping hot flashes at bay with an .05 Estraderm patch. The doctor told me that I will need two weeks to really get the feel to see if they will work for the hot flashes. So far, so good.

Now, simply healing and glad to be home.

Neuromyelitis Optica - Devic's Disease

I met my new neurologist and she is really a cracker jack. She is young and is on top of the research. She spotted what she thought were a couple of very small lesions on my May 09 MRI but they were tiny. My neuro testing went really well and she wanted to do some blood test on me for something called Neuromyelitis Optica (NMO) or Devic's Disease. This affects the eyes the most and this seems to be where my MS has concentrated the most. NMO is a cousin of MS.

The blood test was developed by the Mayo Clinic and it is a very understudied "subset" of MS. My neurologist - Dr. Pandey - called it a "cousin of MS". If I am diagnosed with NMO, my treatment will change ... but not much else. It is treated with IV Solumedrol and something called Imuran (an immunosuppresant). It can also be treated with plasma exchange.

If I look (no pun intended) at all of my major relapses they have concentrated on the eyes. The most recent was in May when my Dad passed away. I feel like I am always living between cases of optic neuritis (ON) and I never can find that pair of glasses that works for me prescription-wise.

If the test is positive, it will be a honing in on the diagnosis and treatment. I need to get through my endometriosis surgery and stay well and positive. That is what my goal is.

Saying Farewell to Lyrica -- and the extra Pounds (I hope)

Lyrica has been a fair and foul weather friend for me. But has it really been that much of a friend? Let's evaluate ...

I have been taking Lyrica since 2006 or 2007. Since that time I have packed on 40 horrific pounds and moved through wardrobe sizes like no one's business. I was happy to be a 12--very, very happy. Then a 14, then a 16 and most recently for my Dad's funeral, I think my suit was an 18. That's a nightmare for me ... a complete and absolute nightmare!!!

I have been juggling medications and a bunch of them are weight gainers. But the one that leads the list is Lyrica. Google "weight gain and Lyrica" and you will see so many stories of women (mostly women) who have packed on weight so quickly with this medication. It should be a black box warning!

Extra weight does not help the mood but neither does pain. I need to evaluate myself off of Lyrica and see what happens with more activity, minus that drug and my pain level. I am headed into a big surgery but at least my pill box will be one drug lighter. I don't know what pain is what???

Incidently, I go to meet my new neurologist tomorrow and I am just going to share the story and the way it is. I don't like the extra pounds and nothing fits around the middle--I am very swollen and bloated there. I don't know what is what. The Lyrica taper is nice and slow over 10-12 days. Last night was a fitfull sleep ... but I blame that on a 5 hour nap in the middle of the day after some nausea. I need to go the way my body says at the moment and just get to October 28th. I hate being a slave to it and just want it to do what I command it to do.

That's the way it should be at 44 yrs old, right? I think so. Thinking positive things as I head into mid October.

MS is the Icing on the Cake

DEAR FACEBOOK FRIENDS -- THIS IS A BLOG ENTRY FROM http://msplaques.blogspot.com -- entries appear automatically.
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I've said it so much .... as MS'ers, we are still prone to other maladies. I could name many that I have that seem to all relate to autoimmune issues. I WISH there could be some REAL cure developed through science that helps alter that autoimmunity flaw whereby our own bodies attack different parts of itself. Allergies and asthma are one of the most common forms of this (I have both of them). Multiple Sclerosis (MS) falls in this category too as well as Hashimoto's Thyroiditis. My body deals with all of this along with endometriosis which COULD relate to autoimmunity. There should be one disease classification that encompasses all of these things. There is a fundamental breakdown in the bodies ability to recognize what is rogue and what is not -- so it attacks everything. Go figure?

I was discovered to have Hashimoto's after a brain and cervical MRI revealed tumors on my thyroid in 2004. Luckily my brain looked good but those tumors were worrisome. That journey ended in the removal of my thyroid in 2007 because of anatomical issues. My thyroid TSH functions were always normal. But the "thing" was growing into a beast that had to be removed. Now, I am trying to balance those thyroid levels (I take .175 of Synthroid and my hair is falling out). I think this is the least of my problems and it is on the backburner for now.

In 20 days I will be going for surgery on my right ovary (right salpingo oopherectomy). Unfortunately, my hysterectomy in 2003 has most likely left it buried in scars and it might not even be recognizable. Let me tell you though, the pain is extremely intense and my Lortab 10's are not really killing the pain as much as I would expect them to. I will work it out and make it through 20 days. Once I am "on the other side" I am SO going to start really getting in shape and work on planning some vacations and nice time with Cecilia. A trip to the market is too much of a task right now. I need to have my life back and feel that I have been more housebound than I should or want to be. MS is not even the reason for this, it's the endometrial pain!

I am meeting with my new MS doctor on the 14th of this month. Dr. Krupa Pandey at Albany Medical Center. I want to make sure that we are both prepared for any MS exacerbation. Dr. Angell repeated several times that this surgery will most likely push me into an MS exacerbation. I will be prepared but I am not thinking like that. I am thinking very positively and that this surgery is going to bring relief for me. Balancing the hormones related to surgical menopause that happens so suddenly is going to be the biggest challenge. I want to make sure all of my doctors are talking to each other, and that everything can be taken care of in sync.

I am doing the best I can to think and dream of positive outcomes. I am enjoying playing my guitar and riding my bicycle (something I have not done seriously since 2001). It feels good. There is hope.

44, loving it and looking forward to a new chapter in life. Through God's strength, I can make it. Always. I feel that attitude really helps fight the battle best. I am not afraid of modern medicine and pharmaceuticals. If they can help me live a better life and a fuller life with my family and friends -- they are a gift.

One month and I will be Recovering

It's the 29th today and that means that a month from today I will be through with my surgery and on my way to recovery. I can only express my emotions as relief and anxiety. Both are natural I suppose ...

I cannot live with this pain the way it is and taking pain medication just to do normal stuff is not any way to live. Pain medication can only work for so long.

So in exchange, I will let the doctor open up my abdomen, remove my right ovary (and appendix if he can get to it) and taser any endometrial implants that he can find. He'll clean up my pelvis and un-adhese any organs that might be stuck together with scar tissue or endometriosis. They will biopsy as needed and GOD WILLING everything will go smoothly with no huge surprises. I am a complicated person (medically). But I feel this doctor has me in his hands and can handle my "case". He will take the extra measure of placing ureteral stents in my ureters to ensure that those are not damaged during the operation. Maybe I am repeating myself here ... but I feel blessed that I have this expert that is going to do my surgery. Dr. Angell. Couldn't ask for a better play on words.

I was in the ER the day after my birthday with what my primary thought was appendicitis. I felt that it was endometrial pain but she was not convinced and sent me by ambulance to the ER for scans and bloodwork. The assessment in the ER is that their job was to keep me comfortable until surgery. They wondered why Dr. Angell could not perform the surgery earlier?? We were told that is his ONE day at the VA. Dr. Angell comes very, very rarely to the VA and I am fortunate to get him there. What is UNFORTUNATE is that the surgery will be at 12:30 p.m. That means I am going to be hungry and dehydrated. I have already committed to weaning myself off of coffee the week before. The last thing I need is a coffee migraine. WHOA!!!!!

Surviving this surgery is going to be my job. Approaching it positively, with knowledge and working towards positive outcomes is going to be what pulls me through. I cannot wait until I can say -- "I am on the other side and it's done".

MS Bedfellows

If a single person dealt with MS and only MS, wouldn't that be enough in and of itself? I guess having MS does not mean that you or I become immune to any other diseases. Whether that disease be another chronic auto-immune condition or the big "C". Pretty ironic in a way.

I guess I have to really believe that God only gives a person what they can handle. I've heard it over and over .... and in my heart of hearts, I believe it.

Today I had the strange fortune of ending up in an ambulance (a day after my 44th birthday) and being rushed to the ER because of extreme pain and nausea that appeared like it could have been appendicitis. For me, this was a strange happening. I was in seeing my "mood" doc and checking in on meds and I expressed that I was feeling extremely nauseous and that it had been going on for several weeks on and off. I was using home remedies of meclizine and Coca Tea to fight it but was seeking something a little stronger. This started an entire hullabaloo that led to an exam that caused alarm in my doctor. She thought I was suffering a potential ruptured appendix and I felt like I was dealing with endometrial pain .... but why the nausea and the rebound pain? Who knows?

After 7 good hours in the ER getting x-rays and a very uncomfortable ultrasound, I was diagnosed with "pelvic pain due to endometriosis". The ER doc said that I needed my ovary removed and my pelvis cleaned out "really good". A call was made to see if the surgery could be moved slightly closer ... impossible. Dr. Angell has one day and I have it: 28 Oct 2009.

The ER's job: Keep me comfortable until my surgery date. That meant Phenargan and stronger Lortab (10/500). I took Lortab tonight and it STILL doesn't kill the pain. It takes an edge off but MAN, that pain is there like a monkey on my back. A monkey that doesn't want to let go. Hey, I like monkeys ... but I want my life back dammit!

Everything lined up and it all worked out. I am going to continue to ride my bicycle little by little (worked up to 5 miles around our relatively flat neighborhood loop) and work my lungs. I need to be in the best physical shape I can be for this surgery and anesthesia--that's my job. Good things ... only good things will come out of this. I am also set to meet my new neurologist before the surgery so that I can get on her radar and we can be prepared for any exacerbation that might come from the stress of a surgery.

For all who have read and prayed and continue to pray .... I thank you with all my heart, really. I know just how tough this surgery is going to be. But I also know that the ONLY way to really make it through surgery and a recuperation successfully is to feel good about the process, think good things about the outcome, and be in the best shape possible. 2010 is going to bring good things for me and I embrace them!

Amen to that!

Surgery Date - 28 Oct 2009

I am looking forward to being on the other side of this whole thing. Lupron really gave me a feeling of what life is like without pelvic pain. It is unfortunate that it did not last into menopause. So now, menopause will happen surgically and since this surgery is going to be a bit of a bear it is logical to be prepared for an MS exacerbation. Since I am getting a new MS doctor, I will try to see if I can get scheduled with her before my surgery date in late October.

I am just looking forward to the other side.

Ovarian Surgery Coming Up ...

When I had my hysterectomy in 2003 I was told that I might have to have my ovary out in the future. Well, the future is now and I have the specialist that will excise it from my abdomen. It's going to be a complicated surgery but it's worth getting my quality of life back and being able to get more active.

Oopherectomy for what is most likely 99% sure endometriosis. One thing is for sure, my waist is getting bigger and my pants don't fit. My Dad's pajamas are the most comfortable thing I have.

I have no date yet ... but I would much rather get this done with and get my life underway. The average age of menopause is 51 and family history is not a predictor. I'm too young to not get active now and get moving with my life.

Lupron was not an option because of the bone loss. Dr. Norman F. Angell will be the surgeon. We are both aware that MS could exacerbate. I think I want to talk to my Primary care doc and see how best to handle all of this.

One step at a time.

Severe pelvic pain -- makes me empathic again.

I thought ideally (but I knew otherwise from actual knowledge) that a hysterectomy would take care of endometrial growths around the pelvic cul-de-sac, on the bowel and bladder, etc. Well, I know that since they left an ovary in for me that I was opening my life up to endometriosis again at some point in the future ... but I always hoped I would be able to ride it out.

Six years post-hysterectomy and getting ready to hit my 44th birthday this month, I am stuck in the quandary of wondering what my best options available to me are. My wish would be to see a Pelvic Pain Specialist as well as an Endometriosis Specialist, but there are not any in the area that I have been able to find. Why is it that it is so difficult to pinpoint a GYN that can handle this situation with the type of knowledge that is necessary? The presence of pelvic pain that has confined me to my home for the past week and is being managed with narcotics should be cared for by a specialist. Thank God I have a GYN appointment on Thursday and am going to request an ultrasound where I think they will find a large "endometrioma" or "Chocolate cyst" and also talk seriously about doing Lupron again and requesting Calcium supplementation with that (if that can be prescribed) as well as multiple Dexa Scans through treatment (before, during, after). I know I am dealing with an ovarian cyst because of the way it is pressing on my back structures and my bowel and feel like I know my body better than any doctor does -- especially in this area. If the cyst could be drained in some way, I would be open to that depending on it's size. But the Lupron would stop estrogen production totally and the edometrioma(s) and endometrial lesions just die. My wish is that it could carry me to menopause.

I feel I am close enough to menopause to try to avoid surgery. If I had a crystal ball though and thought that magic time was coming at 50 (late for my family tree), I think I would say ... find me a scalpel.

Send prayers. Thanks!

Endometriosis rears it's Ugly Head

I know that this blog deals about my journey with MS, but truthfully .... MS'ers deal with other ailments just as much as the general population, maybe even moreso if that ailment has to do with the autoimmune system.

From what I have read, I still think the jury is still out on what causes endometriosis. The reason I am bringing it up is because it has crept into my life in a BIG way and is causing me a tremendous amount of pelvic and back pain (on the right side only). When I had a hysterectomy in 2003, they left an ovary in because I was only 38 years old and was not a candidate for hormone replacement therapy because I had had blood clots in the past. Good enough reason then .... truly. Now though, I am dealing with that decision through an endometrioma on my left ovary that is causing hellish pain that I am trying to control with a combo of Lyrica and Lortab (and muscle relaxers which I take too that really don't assist with this). In the morning I take an anti-inflammatory and that has done nothing to remedy the pain.,

I am getting the the point where I DO NOT want to get back on Depo Provera because of the huge weight gain and the fact that it has not provided perfect relief. I am going to ask the doctor if I can take another round of Lupron safely and hope that it will push me into menopause or get me near it.

I discussed surgery with my sister Pilar today who totally understands and empathizes more than anyone. She still thinks that Lupron is the best for me. I think at this point I would have to agress. Right now I feel downright crappy and in a heck of a lot of pain.

No fun at all. GYN appointment is on the 10th and CC will be accompanying me.

Endometriosis after Hysterectomy

Endocrinologist Visit - TSH Up. Higher Synthroid Dose

I was at the VA for my 6 month endocrinologist appointment and had lipids drawn in the morning for a second time because they were high the last time I had blood drawn. Not sure why, but the number jumped WAY high to 228!!!!! I have always been a 170-180 type of gal! The TSH can do that too as I have learned from my Endocrinologist. He upped my Synthroid to 175 from 150. Hopefully that will help.

I am doing pretty well ... just bladder and some crazy numbness in the limbs (I sound like a tree).

I tried my new medication for bladder called "Gelnique" and I really like it. No dry mouth or skin stuff (like the patch). It's really easy and it seems to be calming my bladder down a little bit.

I had a pretty good exam and just a little INO in my right eye that made me see double when I was following his finger from left to right. A slight lag which I think has been there and comes and goes. Part of MS.

That's all she wrote ....

Feels Like MS ...

It certainly feels like MS today. I wish it didn't ...

I woke up and everything seemed pretty good except that my bladder has just been acting up like it's no one's business. I catheterize, and I am used to that. No biggie for me. I just got 3 months of catheters delivered to my home yesterday (thank you Medicare for a clean catheter every time). The cathing is not the problem ... I struggle with the urgency and the incontinence that comes between caths. It's a bummer, and I am wearing an oxytrol patch waiting for my
brand new medication called Gelnique which is a gel I can rub on my arm or leg once a day. Just released the second quarter of 2009 and marketed towards women with their lotions and potions (uber smart marketing). It will be a great option for me since the patch causes it's own issues.

The bladder is one thing, but the heat affecting my memory is really frustrating me (which just adds to it). It affects my mood, I get crabby and things are just difficult to accomplish. I have various neurogenic pain in my hands and feet and other sensory things and my right eye needs some help.

I look pretty normal, no one can typically tell that I have anything wrong except I am carrying a few extra pounds that bother me. Between Lyrica and Depo-Provera .... I am kind of in a bad place where weight gain is concerned. I am trying to be "ok" with that. Actually, my 3 month Depo shot is starting to wear off and my Endometriosis is kicking in in the right pelvic area. Another thing .... I am stuck between wanting menopause so I can get the Endometriosis part over with and wanting to avoid that. Honestly, I am concerned with bone loss because my sister and Mom both have that. To take or not to take Depo ... I have to have a good, honest discussion with my GYN doctor about it.

I'm sorry if I sound like I am complaining, I have everything in the world to be thankful for. I have a wonderful partner who understands these various aspects of my MS: bladder, memory, mood, pain, fatigue, eyes, muscles .... the whole package. She understands that my immune system is a little wacked and tends to attack itself (thus Hashimoto's Thyroiditis that literally destroyed my thyroid), allergies and asthma. I am thankful to CC and my family for their support.

I had my last visit with my current interim neurologist (she specializes more in Memory and Dementia issues) as Albany Medical Center finally found someone who is a real MS specialist (like Dr. Lava -- but no one can replace Dr. Lava). The new neurologist is Krupa Pandey, MD and she just completed an MS fellowship at Mt. Sinai. I will be seeing her in September or October. I am also getting my GYN and Urologists lined up and communicating. For me, the bladder stuff has gotten a bit worse. My short-term memory is pretty bad in my eyes too - "mild dementia" (it could certainly be worse). I have strategies to work with that and will continue to do that with the help of my partner Celia and technology wherever I can.

A day like today really makes MS stand out and makes me so thankful that I retired. I did not retire easily. I struggled a lot. But now, I am retired and I find my meaning in different things. I have to accept living life one day at a time. That's just the way it is.

Hands and Feet Calming Down - Bladder Acting Up!

MS, true to it's form is calming down in my hands and feet. I am feeling a lot of fatigue lately (and I cannot blame it on the heat because the weather has been beautiful). Things are calming down and the carpal tunnel stuff is, I think, beginning to wane. That is such a good thing!

Bladder is acting up and I have had to resort back to using my Oxytrol Patch for urgency. Along with my cathing program ... seems to be working like a charm. Before I put on the patch I was running to the restroom every 20 minutes or so. One of the biggest hassles of my life is that urgency and any leaking this brings. It can be an embarrassing topic to talk about but someone has to do it and it might as well be me. Why not me?

One a much more fun topic and one that borders on a hobby--hobbies are good, MS as hobby or career is not so good. It's nice to fill a life with other stuff. With that in mind, I'll share some of the latest fun! :)

I did something normal today ... I washed my car by hand. I have not done that in years. Needless to say, I am exhausted from the activity but it was fun. Cecilia and I bought a 2004 Jeep Liberty over a month ago and it has been fun. It was my idea since we had an older mini-van with 105K miles. Got a great deal on "Janis Jeeplin" (CC's great creativity) and to me, it is like my grown up "Big Wheel" :) I LOVED my Big Wheel as a kid. That little machine was my pride and joy and I would zoom all over the neighborhood in Damascus, Maryland where I remember living at the time. Well, I've always WANTED a jeep. Although cool, a Jeep Wrangler is anything but practical for CC and I. Next best thing, a hybrid between the Wrangler and the Cherokee - a Jeep Liberty. It's like a toy! I have the service manuals on CD (all nearly 2,800 pages of them) and have been having fun getting to know "Janis Jeeplin" inside and out. It has been FUN. I would definitely call it a hobby and something I picked up from my Dad.

Thanks Dad! I love you!

New Urologist - More Tests

I have been doing intermittent catheterization since 2002 after a bunch of urinary tract infections that I had no idea about. After multiple tests including ultrasounbds, urodynamics and cystoscopy--I was discovered to have "neurogenic bladder". It seems like the nerves and muscles were working against themselves and I actually discovered at that point that my MS had taken such a toll that I had to catheterize due to "failure to empty".

Glamorous isn't it? Actually, it is one of those things that can keep MS'ers locked inside a shell and keep them from moving out and about. Cathing for me is a freeing activity (it gets the job done more quickly) versus something that prevents me from living life and always having to worry.

Well, I have not seen a urologist since 2004 (whoa) and I saw one today and it is almost like being at square one. She called me "an educated consumer" (I definitely am) and cath 6X per day. Anyway, three doctors did various anatomical tests on me and discovered I have muscle spasms in the pelvic area that definitely affect my bladder issues. I need to do a new Urodynamics test (not the most fun but will be much easier this time around since I know what to expect) and they did a renal ultrasound to check out my kidneys as well as a urinalysis. Very thorough ....

The doctor also talked to me about going to a special rehabilitation clinic to see if that could help with some of the muscle spasms and other issues that effect leakage. I really liked this female doctor - Dr. Elise De (pronounced "Day"). She was a real cracker jack and will work in concert with my gynecologist.

New pathways but one's that cannot be ignored. I know that I progressed a bit over the past few years and have a very difficult time going unassisted. I need to keep an eye on my kidneys and make sure that they stay in the shape they are supposed to be in.

As a person with MS: it's like one disease, many parts to tend to.

Just another day ...

MS Pain That Feels Like Carpal Tunnel

Hands and Feet - Ultra Painful. Is it MS? It's gotta be ...

I have been playing Flamenco guitar since January and have been dealing with some tendinitis type of pain in my thumb. It would be easy to target the guitar and my thumb except that this pain goes into both wrists and my feet too. Oh yay.

It is reminiscent of the time before I was OFFICIALLY diagnosed with MS in 2001 when I was beginning a Ph.D and working with GE (doing some major stuff at the time--and my Aunt was dying) and was hit hard with something that felt like carpal tunnel syndrome. It came on out of the blue, was treated like carpal tunnel with braces, EMG tests (ouch) and almost hand surgery which was thankfully determined not to be needed after a cortisone shot had no affect whatsoever. That "carpal tunnel" stuff went away like it started .... out of the blue one day in October 2001. I think I remember the day and the hour. Talk about a head game! MS is a big head game and it can strike the way it wants when it wants and rob a hobby or a dream. That's the part that can suck the most.

At first I thought my thumb could be something called de Quervain's tenosynovitis. It really fits the bill for location and pain. There is only one problem: it is in the other hand too and my feet. That made me think maybe my TSH is low. I am going for full blood panels on the 27th of July and know it will all work out.

I have been taking it easy on my guitar playing because sometimes the hand is SOOOO painful. I have cancelled the last 3 weeks of lessons with Maria Z. because it's just a little too much to handle.

I am hoping that this will go away as quickly as it came and am very, very close to having a chat with my neurologist. My pain team told me I could increase my Lyrica to 100 mgs TID and I am sure that this would probably help a lot. I am taking an anti-inflammatory too called Mobic as well as muscle relaxers which thankfully don't knock me out in the least and give some nice relief.

I think the hands (mainly hands and more in my right hand) and feet are most likely neurologically triggered. That's one of the joys of MS. It sprouts wings and goes wherever it wants whenever it wants. It's just important to have the tools to deal with it.

I think a call to my neurologist is in order.

MS Exacerbation and Grieving

A video about grieving and MS and the passing of my Father.

Dealing with Changes - Anxiety Spiking a Bit

I have been having so much muscle tightness and pain in my hip area that using my walker ("Jimmy Walker as CC calls it) is imperative for any amount of walking past a half mile.

I finally got my DepoProvera shot and that has actually been a lifesaver. I was going through some pretty rough days with depression and anxiety. I really missed my Dad but know that not having the Depo in my system was causing a lot of endometrial pain AND messing with my hormones and moods. Very, very nasty stuff. I am feeling better now and think I have a little more control over that part of my life. I know that the grieving process is going to take time and will take going through several stages. I know that I miss my Dad and it is difficult to imagine that he is really gone. It's very, very strange.

I am doing my best to normalize and try to get back to being "me" and staying well and keeping stress as far away as I can. I am going to talk to Jamie (my psychiatric nurse) and look at my medicine choices: Lexapro 10 mgs., Klonopin at night for sleeping. I want to explore anxiety and what can be done about it. I feel butterflies just thinking about it. Sometimes daily choices become more difficult to make and wanting to do stuff and socialize is more difficult.

Each guitar class and Jujitsu class is a real victory for me. Every time I can socialize with a neighbor or have someone over is a victory that takes me one step away from anxiety. Anxiety really sucks big time. BIG TIME.

I am glad I have an appointment this week to address it.

Endometriosis Acting Up in Remaining Ovary and Bowel -- Just Shoot me!

To shoot or not to shoot -- that is the question. I was on Lupron for a year and then went to Depo Provera (as an add-back kind of therapy to help with the pain). I am past my 3 months for my shot,

Of all of the crazy things, Endometriosis has decided to pop it's head into the mix of my life and make things kind of miserable. I have just popped a Lortab 7.5 and should be feeling some relief soon (this stops some of the bad bowel issues too because it seems to quiet the bowel to a point where I can deal with it). I am stuck between a rock and a hard place because the endometriosis and bowel symptoms on the right side are just sometimes really tough to bear. I do know the pain of Grade IV Endometriosis and the quality of life is takes with it --worse than MS in my mind at this point ... but it's hard to take the female issues seriously. At least it is for other people. The woman going through it knows EXACTLY what it feels like. Pain so bad you want to die. I hate to be the drama queen, but that is how it was. And although I have only one ovary left (I sometimes question why I made that choice to keep it and not just go through menopause at the age of 38, there is no turning back now). The surgeon has already told me that the surgery to extract the right remaining ovary is far too risky given all of the adhesions that WERE present in 2003 when I had my hysterectomy and that the scarring that is present now would make it really risky: especially for me as an MS'er. It would be a tough surgery and who knows what it looks like in there. A mess I am sure. My first hysterectomy took 5 hours and I lost enough blood to require transfusions. That gives you an idea.

I am headed towards 44, the closest to 200 lbs. I have ever been in my darn life and feeling self-loathing. There is no way to rule out hormones and the fact that I still have Endometriosis despite the surgery to remove almost all of my girlie parts. I was left with one, pumping dysfunctional ovary that has so many endometrial cycsts (affectionately called "Chocolate cysts" - yuck) that it's a wonder that the thing can functon at all. I have little endometrial tissue deposits all over my body. Legs, abdomen--they can even make it to the sinuses and brain. Cruel disease if you ask me!!!

Endometriosis runs in the family on my Dad's side and was inherited by my sister Pilar and I. I think it broke my Dad's heart to see me after my hysterectomy ...l but I was thankful for the surgery. I really was. To me, it did not hurt as much as the actual monthly burden.

So this posting is less about MS and more about my body being stressed by Endometriosis at this time. Pain killer is kicking in and I am going to pull up my bootstraps (while CC drives the car) and make my way to our family function.

CC just re-iterated to me that she would recommend I take the Depo-Provera again (a 3-month shot) so that I can do the things I want to do like play Flamenco, do martial arts, etc. I am kind of stuck with this until real menopause comes my way. I know I am probably only a couple years out given my Mom's history. So, I orderered my Depo shot from the VA mail pharmacy and it should be here in a few days. I'll either give it to myself or have my neighborly nurse shoot me in the arm. We are also going to try to consult with CC's sister Steph to help us with some dietary things. Depo makes you HUNGRY (X 10) and it's hard to curb that appetite. I am on a pillbox of weight gaining drugs. But this one certainly does not help and probably leads the parade. It's so much easier to self-loathe and feel moody. But truthfully, I have many things to be so thankful for.

I am thankful for CC and my family and those supportive friends. Blessings all around.

A week without Dad ... He is Around

I have to say that I feel the spirit of my Dad and that he is helping us accomplish a lot of the stuff that has to be done and precedes a funeral Mass. Mom has seemed somewhat at peace and so strong through the past week but I think that she has her moments. I feel that Dad is in a much better place now and happy to have a few reminders that will always stay with me and keep us close in spirit.

Thankfully, the steroid side-effects seem to be waning more and I have my vision back. I can't ask for more than that, really. Solumedrol is amazing for that. It kicks things in the butt and puts the body back on track. I was thankful for the taper which really helped alleviate the symptoms. I have a walker now but I don't know how much I will have to use it barring trying to walk more than a mile. Something I may try to do with my neighbor.

Mobility aids are something that are always good to have around EVEN when they are not being used. I have crutches, a cane and a walker .... sometimes these are really just the best option. There is no shame is using any of them. When they are needed, they are available.

I am heading back home today after having spent a few days with my Mom and helping her to take care of things. I think we have gotten a lot done.

Striving for normalcy. A little at a time.

My Dad's Obituary -- Working Through It

Rolando de Avila, 74, passed away on Wednesday, May 13, 2009 at Memorial Sloan Kettering Hospital in New York City surrounded by his loving family. Born on January 1, 1935 in Cochabamba, Bolivia he was the son of the late Eduardo and Emma (Canedo) de Avila.

Raised and educated in Bolivia, he came to the United States in 1956 to pursue further education as Communications Director of the Bolivian Oil Pipelines. It was at this time the he met his future wife Patricia Ann Bruce whom he married in 1958. The couple celebrated their 50th Anniversary in 2008. After returning to Bolivia for 5 years to fulfill a contractual agreement with the Bolivian government, they returned to the United States in 1964 where Rolando opened his own business in Wheaton MD called Electronics International Service Corporation. He was a major East coast sale and service center for Collins Amateur Radio equipment as well as many other amateur radio lines of equipment. He closed the business in 1984 and moved with his family to Glens Falls, NY. He continued in private sales and service of the amateur radio equipment, which he loved. The family owned and operated Blenheim on the Lake for several years and also the 200 Glen Antique Marketplace in downtown Glens Falls. Rolando was also well known as an avid Washington Redskins fan and loved nothing better then watching the games surrounded by his family and friends.

Rolando was predeceased by his parents Eduardo and Emma (Canedo) de Avila and his three sisters; Maria Laura, Miriam and husband Fernando, and Irma and husband Marcelo.

He is survived by his wife Patricia Ann (Bruce) de Avila, his children; Ana Maria Cronin, Arthur and wife Barbra de Avila, Robert de Avila, Pilar and husband Howard Pinsley, Diana Teresa de Avila and partner Cecilia Ferradino, Michael and Stacey de Avila, son-in-law Robert J. Cronin, grandchildren Christopher Cronin, James and Elizabeth de Avila and Lauren and Stefanie Pinsley, his sister- in-law Joan Winchell of Hawaii, brother-in-law John Bruce and wife Dolores of Rochester NY along with many nieces and nephews. In Bolivia three half-brothers and a half-sister, his two special nieces Ximena and Cecilia, and many cousins survive him.

He will be missed by many close friends who were like brothers and sisters to him and with whom he maintained constant contact through Skype and electronic means.

At Rolando’s request there will be no calling hours. Funeral Arrangements are under the direction of Sullivan-Minahan & Potter Funeral Home, 407 Bay Road, Queensbury N.Y. 12804. A funeral mass will be held at Annunciation Parish in Queensbury, N.Y. on Friday May 29, 2009 at 10:00 am. A small reception will follow after the mass in the church social hall. Online condolences may be made by visiting our website www.scott-barbieri.com

In lieu of flowers, donations may be made in memory of Rolando to The Cornerstone Soup Kitchen, 293 ½ Main Street, Hudson Falls, N.Y. 12839.

Prednisone Taper - having Mobility Problems

I understand now why a Prednisone taper is so important after such a high dose round of Solumedrol. If I could try to convey the lower body joint pains, I would .... it's just one of those rebound effects I guess and I am trying to get my hands on a walker.

Cecilia and I have had a trip planned to Vegas for about 6-8 months and I am not sure if I am going to be able to make it or not. I am concerned about my mobility but also concerned about a downed or compromised immune system because of the stress. I think I just need some time of rest and time to figure out what I am feeling and how to grieve. It's a first Sunday without Dad and it is strange because I am so accustomed to Skyping with him or hearing him on the phone.

It's going to take some time to get used to. I am not sure how I can help my physical body to not take things so hard ... I have not figured that out yet. I wish I had the "stuff" that made me a little more stress-hearty these days. But MS can make the body weaker and more susceptible it seems.

I'll put it all in God's hands.

3:50 p.m - doped up and feeling out of sorts a bit. I have decided to skip the trip to Vegas this time around and am actually going to lay low and avoid catching something and having to gimp around Vegas. I will spend time with my Mom, see if I can offer Mike a little respite, and try to get a walker from the VA over the week if I can. That should be relatively easy--provided I have the energy for it. Just feeling like a slug on pain meds (and running out of them) but they are the only relief at this point. I feel very at peace with my decision and I know that CC and Steph (CC's sister) can have a good time in Vegas and relax. I'll enjoy a little more vacation after we get some things behind us. It's all good and it is the best choice.

Day 3- Solumedrol - Pain decreasing and Vision Getting Better

I did my own Solumedrol IV this morning and it went along fine without any issues. I just have the yucky metallic taste in my mouth that will last awhile along with the potential crash. The doctor did prescribe a taper this time for me because the IV crash last time put me on crutches for a couple of weeks ... the pain was horrible!! A solumedrol crash after such a high dose can be tough (atleast it was by IV for me). The eye still hurts somewhat but the pain is down by 70% and I will take that.

I feel like I am dealing well with Dad and that we as a family are dealing with his passing as a good working unit. I'm tired and stressed (so my body told me so) and I need to take it as easy as I can without getting too crazy. I hope the taper helps with some of the crazy symptoms too. Fortunately, with my sleep drug (Klonopin) I slept like a rock and woke up a little sleepy actually. Usually the steriods can keep you up. I did have some energy to accomplish some little errands with CC this morning which was good.

She has been a rock. This weekend I will plan to go up North and spend some time with my Mom and take CC along too. I just don't want to overwhelm her at this point. Lots of stuff to do but no big rush to do it in. That's the key.

I've gotten a lot of support through Facebook and have been so appreciative. No one is ever really prepared to have a parent pass away ... I am just thankful not to have to do it alone.

Solumedrol Day 2 - Incredible Ocular Pain & Crappy Vision

I so wanted to try to keep my Flamenco guitar lesson today because it really feels like an out-of-body experience for me and I need (we all need) those type of outlets. Music is the ultimate outlet for expressing the soul. I have always felt that.

I had to cancel the lesson because of increased ocular pain and low vision (that doesn't help). I'm hooked up to my second IV as I type this keeping a good sense of humor with a great nurse. I learned that the high dose (1 gram a day) can cause a big crash which explains my crutches in 2002 for about 1 week after the steroid crash. I have called my neurologist to request a Medrol Taper Pack. This should make the crash not so crashy and I should be feeling a lot better. That's good.

My vision is crappy but I expect to get some relief soon. Looking for that vision and almost moreso, the pain relief. Two 7.5 Lortabs aren't touching it. What's up with that?

Dad passed Today - Solumedrol day 1 - optic neuritis

I started my Solumedrol today. Perfect timing after having spent Dad's last day on earth with him in a strange hospital in NYC (albeit one of the best, it still stung because we wanted him home). He was at Sloan-Kettering Cancer Center and by the time he arrived there for his second opinion the Doctor said he would never make the trip from NYC to Glens Falls (3.5 hours or so) home alive and that they would have to try to stabilize his vitals.

Yesterday, all of his children located in Upstate NY that were not with him in NYC (5 of us with in-laws) hauled our butts down by train to be with my Mom and by his side and say our "good-bye's". I knew when Cecilia and I visited Dad and said our "thank you's" and "good-bye's" that it was going to be the last. I sensed that there were only hours left to his life given some of the physical signs (and an understanding of the death process from being a chaplain). Knowing helps ... but it doesn't stop the body from imploding with stress and numbness. Dad was 74 years old and died from an infection of some type and Stage IV Colorectal Cancer. The infection seemed to expedite his decline very quickly. He passed peacefully and without pain.

My body imploded into an MS attack a few weeks ago through optic neuritis. If you are an MS'er, I am sure you know that nasty thing can hurt. A tremendous amount of ocular pain along with blurry vision in one eye (my right). I started my solumedrol by IV today and I already have that nasty taste in my mouth (came within 10 minutes of the IV starting and I cannot seem to get it to go away). I am already feeling a bit agitated and goofy -- but I think that is the stress and all of the feelings that go along with the situation and the overwhelming feeling of wondering how to help my Mom out and work through the natural process. I want to be stronger .... but I am just not that strong. At least my MS is telling my body that I am not that strong.

My Dad taught me another very valuable lesson about dying (and I have seen some very peaceful deaths in my family) that is does not have to be dramatic and that you should live your life with no regrets. That is something I have always learned from him and I can say even with a disease like MS that might limit me is some ways, I have NO REGRETS. I've lived a full life and am blessed to the hilt.

Now, day to day and seeing how to help Mom out and move through the natural grieving process. I am trying to keep things as normal as I can--I think Dad would want that. He's in Heaven now and I can rest peacefully with the thought that we don't have to try to transport Dad in critical condition up to the Cancer Center in Glens Falls, NY (something we were planning on doing to bring him home). Instead, we released him and told him it was "ok to go" and that we will all be "ok". I think he heard the message and God answered our prayers for a speedy and peaceful passing. CC and I could ask for absolutely nothing more. A day to say goodbye and thank you and a speedy passing. He's no longer suffering and so fatigued.

Me, I am confident the steriods will do their thing and I will try to keep things normalized and lean when I need to, cry when I need to and ask for help if I need it. The latter is the toughest because sometimes it is difficult to know the help you might need. That's why CC is my "angel"--she really just seems to know.

Dad is Dying & MS Hates Stress

We learned today that Dad's days are very few. The goal is to move him from Sloan-Kettering back to Glens Falls, NY where most of us are and where he will be most comfortable. He went to Sloan for a second opinion and was in such bad shape that they knew there was nothing that could be done and that more chemotherapy would no longer help him. His hepatic duct is being blocked by a liver tumor and bile is pouring into his blood stream. He is nauseous and just feels really, really sick. He is sick .... Dad is dying.

It's been a very stressful few months and more specifically couple of weeks. His decline has happened SO quickly that it has taken the entire family by surprise.

The stress must have gotten to me so I have to take a round of IV steroids for optic neuritis in my right eye. The nurse is going to come tomorrow and set the IV up. Hopefully I can administer them myself without an issue. That is the way I did it in the past.

Right now though, my thoughts are on my Dad.

The focus is on Dad

I guess we can never really prepare when a parent gets cancer and really starts to decline. It's the type of thing that a person wants to push out of their mind for as long as possible. In that arena, I am absolutely no different.

My father is struggling and fighting with Stage IV Colorectal cancer with mets to the liver. It seems like the liver is becoming more toxic and making him jaundiced and EXTREMELY tired. He is so tired that he can't keep his eyes open and he's slept through some normal bodily functions. That's scary stuff. Over the past week I have been the conduit between my parents and other sibs and am doing the best that I possibly can to communicate information as clearly as possible. Over the past week my father and I have had some real heart to heart talks and he has asked questions that seem to have burned in his mind for years. I am glad he is bringing some closure to that. That tells me he is trying to prepare himself to leave .... it is one of the natural steps in the process.

His spirit is remarkable ... absolutely positive and remarkable. He and Mom are headed to Sloan-Kettering where Dad is looking forward to a second opinion. There are targeted chemotherapies that can get to this liver issue and toxicity. That's what I think he needs.

It's been tough to watch my Mom go through all of this (Dad appears peaceful and comfortable). What child can ever prepare for a parent's passing? As philosophical as I can be in life, it's just impossible.

I am working on finding things for me that help to rejuvinate me. Right now Flamenco guitar is such a wonderful and challenging outlet. There is nothing that can permeate that lesson--it's a time that is all my own and is creative and challenging. I have something besides martial arts which has been such a challenge (I keep hurting my shoulders) and this presents another hobby and outlet that is wonderful.

Exercise is sorely lacking in my life but I will give myself the excuse that there is "so much going on". Excuses aside, it is something I need to do to help work off some of the extra stress that is inherent to this entire situation.

Tough times.

Invisible MS and the Handicapped Parking Saga

I'm one of those MS'ers who doesn't use a cane or wheelie-walker or a wheelchair. I've used a wheelie-walker when I had a post-surgical MS exacerbation involving vertigo and was struggling with motion sickness and balance. THEN, I looked disabled with my head bent low ready to vomit in a bucket. There was no doubt because of my wayward swagger that things weren't right--I actually looked really drunk. My legs and balance were off and I rightfully "fit the image" of a disabled or handicapped person. Boy, it's a heck of a lot easier when we can fit into a tight little handicapped box.

Today I was grocery shopping with my partner and got the really tough stare and nod of an elderly man who thought that we took a handicapped parking space without having a disability of any kind. We were loading up our van trunk and he was not able to notice the handicapped license plate that stated "Disabled Veteran". To get a Disabled VET license plate in NY, you need to be "permanently and totally disabled". But this guy couldn't see that in me. It becomes a teaching moment if a person is opened to it.

I saw the nod and disgust on his face and asked him: "Sir, is there something wrong?". I wanted to chance to explain--there always seems to be so much explaining that needs to be done sometimes with invisible MS symptoms. This man could have been in his late 70's early 80's and had a limp--he was struggling and that was clear. What he wasn't aware of is the fact that I have MS, am affected highly by heat, fatigue EASILY (muscles and mentally), lose visual acuity, can pee my pants if too fatigued or hot. Bladder, fatigue and vision are the biggies. Add heat to that and you've got a bad combo.

Having MS is one challenge, dealing with people's reactions to it is an entirely different type of challenge. I am often asked what my career is. I either choose to tell people I am retired (and am open about "how" I became retired: no lottery win) or I selectively choose to tell them I still work in IT. Sometimes it is easier that way.

Living with more invisible MS sometimes feels like living with a lie.

"Shouldn't I LOOK more disabled?"
"It's not fair to those who are more disabled?"
"Do I really deserve a handicapped parking plate?"
"Wouldn't walking with a cane LOOK more disabled?"
"Maybe I should try to LOOK more disabled?"

Fallacy of fallacies. The disease is what it is. Degenerative, life-long, neurological, a mind-fu$% at times, chronic, relapsing-remitting for me. I am thankful for the remitting. So thankful. I am thankful for the neurologist - Dr. Neil Lava - who encouraged me to leave the corporate rat race and enjoy life while I totally can. I am 43 and on my way to 44 in September. I am NOW really learning the lesson to enjoy life. I am thankful to Dr. Lava for encouraging me to take the hard leap. I was a work-a-holic.

I said a prayer for that man and will continue to say prayers and try to educate anyone who will listen about invisible multiple sclerosis. MS hits all of us so differently--none the same (really). As long as I can educate, I will. For all of you who stumble upon this and have to deal with the lack of understanding sometimes displayed by others, be patient with them and try to hold back the anger and resentment. Anger isn't good for you or them. Say a silent prayer and move on. Thank God for the ability to move on.

Blessings.

Having fun and taking a mental break

Today I decided to escape some of my chronic pain and work on some relaxation. I did this through playing my guitar, listening to a Maria Zemantauski album (I start lessons with her tomorrow), reading and sitting with my cats. I took care of the "had to do" items like paying some of my bills earlier this morning. Now I am taking the time to make a special day of relaxing.

I am finally, really beginning to let go of that "career woman" thing and go for the creator, artist and just having fun. I am working on "un-careering" myself which has been such a challenge.

Maybe I am beginning to turn a corner. One day at a time.

ENT (Ears, Nose, Throat Visit): Vocal cord atrophy

I had a visit with my ENT on Friday to follow up for the Septoplasty and turbinate reduction surgery and for my current sinus/throat infection. It's been about 10 days and the infection started and it is still hanging on.

The ENT did that lovely "tube through the nose and down the throat" to look at the vocal cords and sinuses. She told me that my right vocal cord is atrophied and weaker but that they are closing properly. The latter is a good thing but I think the fact that my right vocal cord is weaker, I will have to be careful with it and think twice about singing a ton (not that I have since I consider my voice a little raspy and weak at this point and not in my control).

I am glad I have guitar to express my "voice" at this point. Flamenco takes so much concentration that it will be my voice and drumming. I am excited for it but will see if there is something that can be done to strengthen my voice. I thought it was an interesting but not surprising find (the atrophy on the right).

The ENT also thought that one of my turbinates looked like it could be trapping fluid on the right side so I am headed for a CT Scan on June 10 and a visit with ENT on June 12th. It could mean another small procedure, nothing I am too concerned about.

Right now, Physical therapy and getting my stuff in order.

Starting Flamenco Guitar this week, getting warmer. Staying Cool.

We have had a couple of very warm days and I am still fighting my sinus infection. I missed a concert I wanted to attend last night (Flamenco with Maria Zemantuaski) because of a nasty. residual and unpredictable cough.

I had intended to go to the concert because I am beginning Flamenco guitar lessons this Thursday with Maria Z. I feel honored and a little nervous to get the opportunity to learn from such a great player. I have been doing some self-study since February and it has been fun. The last thing to come is the nails and I have been working on those. I've been playing guitar since 1983 but am self-taught, this is a great and once-in-a-lifetime opportunity to run across a such a Maestra. This will be a great hobby and something to challenge me along with martial arts (which has been more sparse since November).

Go Flamenco!!!!

Back Spasms - for 3 weeks out of the Blue

I've been taking Robaxin now for about a month for muscle spasms. I've somehow developed back spasms out of the blue (lower back) and have not had them since the 1990's when they would hit the same way. Very, very painful. I don't know the cause for sure.

When they hit the last time, it was the same way .... out of the blue and often when I am seated. What's that about??

I am headed to the Physical therapist next week sometime and will ask about this. At this moment, I am getting over a head cold that has been nasty and I am sure that does not help things.

The fact that I have about 30 lbs that I would like to lose at this point does not help anything. But I have not gained anything in about a year. Just part of MS I suppose (even back in the 1990's). I thought these back things were done and look forward to them leaving. Bye, Bye.

Sometimes I forget who I am ...

Sometimes I forget who I am and I think that I should be able to get A,B,C done on a normal Saturday when Spring coolness is in the air. So I grab some garden tools and venture to clear some pine needles from our pool area (which is not very aesthetic because I don't have the energy, talent or desire to do that type of stuff).

I don't know how long I actually spent outside but it felt like an eternity to me and I worked to the point of my muscles shaking like little leaves. I made sure to get on my inversion table to stretch out my lower back and that helped. But I don't have stamina like I used to.

I get the mail today and finally receive something that I have been waiting for for awhile. It's all wrong and I have to return it. Well, what should have been an easy task (prepping it to mail) turned into a more difficult task trying to pull all the pieces together. Also with the mail came a MetLife envelope (I never like to see those, that's long-term disability) and they want all my medical records from January 2008 to present. Well my goodness ... that's a task in and of itself and I will have to coordinate that.

I get overwhelmed easily ... and sometimes it's easy for me to forget that life cannot move for me at the old pace. I have to slow stuff the heck down and take my time if I want to do things right.

Balance has been a little bit of an issue lately ... tipping over a little bit which is kind of funny. Not funny when in an elevator of people at a VA Hospital but funny most other places. Oh well. Onward ho. Get through a day at a time and try to have fun and not feel too old too soon. Keeping a young spirit is critical for me. If that goes ... I will probably go along with it. Always young.

Go Red Sox!

Mouth, teeth, gum pain and burning. Thanks MS!!!

About 3 weeks ago, out of the blue, I got a new MS symptom. A new symptom is always a little strange at first ....

The right side of my mouth (teeth, gums ... mouth and tongue at times) burn and just outright hurt. It's the same kind of stuff I have felt in my feet and around my trunk/mid-section. It's downright annoying and very, very strange. I was at the dentist about 3 months ago with no problems except sensitive teeth (which I am always treated for). This is totally different and involves my entire mouth on one side.

MS can be so strange. This is something that I think Lyrica could probably alleviate. I take 150 mgs. of Lyrica towards the evening but may have to increase that a little bit (the pain docs even mentioned that). I have good mouth hygiene and had my first cavity (a tiny one) in about 15 years last year. By the type of pain and burning, I can tell it is neuropathic. I've learned how to distinguish this.

One thing, it stinks! But I can be pretty sure it will have a sudden end point like every other relapse has. The good thing about Copaxone--every relapse seems very minor compared to before Copaxone.

I love that stuff--needle and all. It is working for me.

Dysphagia and Gastroparesis - My MS

I've been doing relatively well with MS and handling it well. Distractions like playing my guitar (and also hoping to hop back into Modern Jujitsu--Martial Arts--come April) make it just another thing.

I have been experiencing more dysphagia and gastroparesis than usual. This has to do with swallowing. When I had a swallowing study, they found I had an esophogeal motility disorder and paralysis of one of the cranial nerves (cannot remember which one). Over the past few weeks, I have been dealing with more motility problems where my stomach is not emptying quickly enough and food or moreso liquid that has been sitting there too long .... is coming back up the shoot. It's a nasty feeling and makes me feel full a lot of the time. I know this was a huge problem for me when I had my colonoscopy two years ago (or so) and had to do the cleanout. It was too much liquid over too short a period and I just vomited it all up. That stunk! A GI doc explained to me that slower motility/digestion is common in MS and that next time, I will do my cleanout over two days. Fun for me, right? Given the fact that my Father has Stage IV colorectal cancer, colonoscopies are no longer a question for me. I had a polyp removed in 2007 and my next one will be in 2010.

The full feeling is just kind of strange and annoying. I think I am just going to have to eat and drink smaller quantities more often. I love drinking Seltzer water and I know this is not helping me out (I chug it).

Dysphagia and the motility problem is just a part of my life ... but I feel like it has been extra active recently and will mention it to my neurologist and my regular doc.

Fatigue and having Fun Despite it

I am trying not to be so hard on myself because of fatigue. It's just a fact of life and I am learning that once I know the way my body works (that it is mostly predictable), I can plan things around that and take advantage of 6 good hours a day when taking Provigil. Sometimes there is more, sometimes less. But I am getting the hang of the rhythm -- and that is my life lesson recently. I'm learning to embrace it better instead of being self effacing. That does not help the situation at all.

Recently I have been noodling with my new classical guitar (noodling AND studying). I have decided that I want to branch out into the area of Flamenco because it is SOOOO beautiful. I will be happy to learn some of the basic strumming patterns like rasgueado (one of the most recognizable patterns). I don't have a teacher and will be attempting to learn some of it through DVD/multi-media instruction. It's what I have at the moment, so I will use it. IF I happen to run across a teacher--I will cross that road when I come to it. But mainly for me, it is for relaxation and fun with no stress involved.

MS has been very reasonable lately besides fatigue and foot pain. Just part of it's strange way.

John Borter's Modern Self-Defense Academy - starting in April SLOWLY

I love staying in touch with doing some coding in a non-stressful way. I have been working with my Sensei (Sensei John Borter) to help him build a website that will truly advertise his martial arts system and share a lot about who he is and what he does (which is amazing).

http://modernselfdefenseacademy.com/

I am actually very proud of the work and how it has turned out. Lots of different coding, installs, widget and plugin hunting and hosting (I do my own hosting). I've built a plethora of web skills throughout the past 12+ years. It's been fun.

I am looking forward to getting back into training and am going to start in April nice and slow. I intend to watch some video before that time, work with Celia on some of the drills needed to get back in the swing of things. My pain and rehab doctors told me I should just go and see what my body tells me. I think that is a good tactic instead of playing scared. Pain is a fact of life for me, although I do not want to exacerbate things like my neck (OUCH), I think I can work with my shoulder which is beginning to calm down with daily Votaren rubs and care. The next two weeks will be preparation weeks for me to get back in touch with the martial arts side of me. I also want to dig my heels into the classical guitar as well -- both disciplines require an excessive amount of relaxation and I think will really complement one another.

So that is good -- getting back on track. I'll also continue to try to work through my wicked fatigue and deal with it as it comes without feeling guilty or whatever. It is a fact of my life.

Feeling Good - But Fatigue Hitting Hard

Fatigue has been hitting me kind of hard lately whether I take my 100 mg. of Provigil or not. This just seems like something I have to learn to be patient about. Yesterday I slept 4-5 hours in the afternoon even after taking my med. It is just the way it is without rhyme or reason??

I did go to a rehab medicine doctor yesterday and I have some PT planned so that I can learn a home strengthening program and learn how to use my TENS unit for my neck. That will be very helpful.

My doctor told me that I could start martial arts as soon as I wanted and that my body will have to be the pain indicator. I think the shoulder is beginning to calm down a bit and I have lost some range of motion in my injured shoulder--but she also mentioned that there is no use bracing it up as I will probably end up with a frozen shoulder that way (makes a lot of sense). So, I decided that I am going to begin Modern Jujitsu with Sensei Borter in April and will work on some strengthening ahead of time along with some flexibility. I think it will be good to give things a try and see how I do. That is the best way to approach it.

Otherwise, doing fine and going with the flow ;) Fatigue is tough, but it is one of the things in life that I just have to learn to deal with and work around. A nap is not harmful (it's beneficial for me) and my schedule is flexible because I do not work. I am going to try to be more patient with myself and let the days evolve the way they want to. If I need rest, I will nap.

That's just the way of my world. I have been having some fun with my new classical guitar. Perhaps today I will take some time to move into the curriculum (even though I would like to change the strings and have the action adjusted at a shop). It's a beautiful little Guild that I am extremely proud of. :) Hobbies are good medicine.

Pain Clinic MS Pain and Septoplasty Update

A Vlog update that rambles around the issues of MS pain and Fibromyalgia pain and a Septoplasty Update. I talk about depression and pain.

It feels like Spring -- in many ways ...

I don't always want to do it -- but it is a part of who I am. "I am an MS'er -- a woman with MS". It doesn't identify who I am totally, but it cannot help but creep into just about everything I do an everything I am. Case in point: I am retired. People often ask: "Well, what do you do?" (meaning career-wise) and I tell them I am retired most times. Some people say: "You lucky duck!" It get's a little more awkward when I carry the topic to the next level ... why I am retired. I assure them that life is better this way but it wasn't always thus. I am such a work-a-holic that it is difficult to keep up with my own desires to work. But I am re-inventing, and for me--there is Spring.

I am no longer ashamed of being retired on disability and I no longer feel the incessant need to work my fingers to the bone and cause stress within myself because I have a perfectionist mentality that wants to contribute to society in the best way I can--and my mentality was always a bit traditional. Now, I feel I can contribute in many ways. It's ok to be "retired", not work, and maintain quality of life. In a large way, I earned it by serving my country and signing up for Long-term Disability. I'm beginning to feel more comfortable in my new skin. It isn't new, but it is beginning to feel new and I am approaching it that way.

My new venture will involve taking my guitar playing to a classical level and really learning some of the theory and style behind it. It will be challenging and completely new and should be a lot of fun. I am looking forward to the challenge.

Channeling and Re-Inventing

I am in the process of channeling and trying to release different creative energies in me and recreate parts of me that have been dormant for so long.

I have mentioned on this blog many times that I have wanted to bring music back into my life. I've had a million excuses within myself that have kept me from doing "something" with any substance in the world of music. I've been critical of my voice and my aptitudes--things I used to develop with a lot of vigor back in the 70's, 80's and some of the 90's. I've had some mental blocks that still are with me. But I am approaching life differently now. I feel like I have to. I am thankful to my Father for helping me to see some new things.

Life is finite, our time here is limited and with MS, we never know what way life is going to turn. For me NOT to take advantage of my abilities and leverage them now, while they are intact, is kind of foolish. If I think about things this way .... I will live with no regrets. I don't want to live life with regrets.

I am blessed to have my CC and to have my family that is so supportive. I will share more on my plan as things develop. No letting the cat out of the bag yet. For the moment, I am sidelined from martial arts because of my shoulder injury. Instead of being completely bummed, I need to take it for what it is and find other hobbies and interests.

I'm doing that now :)

Getting a grip on the pain of MS and Fibro

Recently, more often than not I am finding myself more depressed and anxious for reasons that I really cannot easily identify. Is it the natural course of the disease, is it hormones--situational???

Sometimes this disease can wear you thin. Fatigue, bladder, mood issues and constant pain. The pain I deal with is driving me nuts sometimes. I was diagnosed with Fibromyalgia back in 1990 because I reacted to most of those 18 specific and diagnostic pressure points. It seemed like the disease was new or just getting noticed back then. I had NO idea what it meant ... but I do know I deal with a boatload of pain and that when I went to my pain clinic orientation at the VA Hospital in Albany, they said an MS/Fibro dual-diagnosis was not uncommon. I just need to take care of this blessed pain and get a smile back on my face. It friggin' hurts and the Lortab I take doesn't do enough. Not near enough.

On March 5th I FINALLY get to see the pain team and go over a huge bit of paperwork I filled out to identify my pain. I'm just looking for some relief. I think it's depressing me a lot. I don't find myself crying ... but I do sleep in the afternoons more and don't want to do a lot of things. I find I am socially anxious more than I ever have been.

Once I can decrease my overall pain to a level I can stand--I may be able to be more myself and do more things. Right now, I am just a little agitated and depressed. Cecilia has been the best with dealing with my "crab-cakes"--we do it through humor and she loves me for who I am and supports me like a strong foundation. I am blessed by her.

March 5th cannot come soon enough.

Working through Fatigue - Doing a little Web Work

I have been hit with a lot of fatigue lately and feeling productive at all has been a challenge. Even though I don't work, I still need to feel like I am doing something ... but it needs to be on my time and that is sometimes the difficult thing to work out in my own psyche and with others. Pushing hard is just not an option--especially when cognition is involved.

I have been working on Sensei John Borter's Modern Self Defense Academy's website

It's been fun and I have been working on it in small spurts almost every day. I used a Wordpress content system so that we can have the flexibility and ease for content addition. It has it's limits--but the pros outweigh the cons ... especially if the website needs to be handed off to someone.

There have been moments over the past week where I just have to nap, rest or whatever and need to leave it alone because of fatigue.

While my shoulder is healing (which is about 4-6 months out I hope) I need to keep my nose in this stuff (not the web necessarily but martial arts). It is difficult being limited physically with a really torqued shoulder. I hope that it heals to the point where I can do some of the gentle stuff with care.

Learning to be Retired - Dealing with it Gracefully

I think that most people would think that being retired by the "age of 40" would be a dream come true. We always hear about young executives of dot-com millionaires who managed to ride the wave and retire at a young age and enjoy their yachts and big houses, etc. In these economic times, I am sure that is more difficult.

I am talking about a different kind of retirement here. I received a comment from a sister-MS'er who is newly retired (2 years) and I wanted to share it:

"Hi Diana! I, too, am "retired" due to fatigue. I went on disability about 14 months ago, and the first year of my retirement was spent in doctors' offices, PT, OT, and filling out volumes of disability paperwork. But now I'm on Year 2 of this sabbatical and I'm struggling with conflicting emotional issues of happy to be out of the rat race but unhappy that I don't have major career goals to motivate me. I'm still trying to define myself in this new role; I'll be sorting this all out this year, I hope! I'm at shortinthecord.blogspot.com"

It is difficult to think of retiring because of disability and that something like fatigue and cognitive deficits could be so grave that they require an exodus from the workplace. I can empathize with Joan. I tried, with CC, to run a home-based business that failed and cost me my 401K from GE. It was a gamble that I was willing to take because I did not want to believe that I was incapable of sustaining employment that I was enjoying. The problem began to be "predictability". Predictability with MS is a word that contradicts the disease. I cannot predict the levels of fatigue I feel, the pain I feel or my vision or bladder issues. These are the invisible things that make being "permanent and totally disabled" according to the Veteran's Administration difficult to swallow at times. But I am getting beyond myself and my desire to "produce" and try to make money. I can sell an eBay item here or there, but I don't need this money to live and I am blessed. So what am I going to do with my time to foster meaning for me? Here are some of the things I do and get joy from:

-- Videos on MS and other Medical Issues -- YouTube
-- Podcasting (???)
-- Blogging
-- Contributions on forums
-- Music (voice, guitar, drumming)
-- More reading (along with my Amazon Vine Reviewer obligation which is fun).
-- Researching CC's and my future -- possibly Florida.

There are always things to do. The main thing is, keep the stress low and enjoy life. Some days are going to be "blah" days where fatigue colors everything and it is difficult to do anything.

I am blessed that my MS is stable and I want to keep it that way. Even after my Septoplasty, I do not recall having any exacerbations and that is a step up.

Right now, I have to take a short sabbatical from martial arts while my shoulder (AC joint) tries to heal. I will be wearing a brace for months that will help keep me from raising me arm from above my elbow. This is irritating the AC joint and it will never heal if I don't give it the chance.

Little by little and the fostering of different hobbies.

Relieving some stress - learning to live ...

I've kept some things close to the chest over the past couple of years in regards to running little web businesses. I've been doing this for chump change since about 2004--but it has given me a lot of purpose and the challenge to build a small clientele has been a lot of fun. Today, I dumped one of the last remaining remnants of my cottage industry which has been a lot of fun, kept me busy and has provided an opportunity to share something I really believe in.

As of today though, given a strange climate, I have decided to close shop and relieve myself of the stress. I am going to dig my heels deeper into martial arts and try to find the inspiration that I once had that helped me to produce music. Music was such a big part of me. Somewhere along the way I lost a lot of inspiration and have not done anything with it ... despite having the tools I would have DREAMED of having 25 years ago.

A new chapter in my retirement that equals more fun .... I'll "work" on it. :) I promise.

Foot pain and leg spams ... say it ain't so!

I am feeling some of that familiar pre-Lyrica foot pain, spasm that makes very little sense except to an MS'er. Fatigue has been the name of the game but now, miserable "foot feelings" and pain and a spasm in my calf that is twitchy and painful. Not sure where it is coming from ... but there needn't be a reason ... remember? This is MS, that nasty MonSter that will do what it wants, when it wants without any rhyme or reason.

Since I have been on Lyrica, this has abated a lot of that sometimes horrible foot pain and nueropathy.

I decided to add a muscle relaxer to my Lyrica to see if that will ease things up.

I am happy about my sinuses though--great stuff and breathing a bit better every day. Cool stuff!

Grade 10 Fatigue!

I forgot to take my Provigil today and it showed. The fatigue I have been trying to push through is one of the primary reasons that I am permanently and totally disabled through the VA. The fatigue in MS is unpredictable and non-discriminating.

I ran one errand with CC--to get groceries and thought I had a leg up on the day. While I was driving home it began to hit and I was wiped out completely.

Completely.

I need to remember that I have to take my Provigil and it is there for a reason.

Centering and Discovering What Really Matters

Quality of life is one of my main missions right now and will be forever as a woman with MS. I have spent the past 2 years doing a LOT of affiliate marketing and working at earning a bit of extra money on the Internet. This was a huge challenge for me. Over the past couple of years, I've earned up to $2000 in a month at my best.

I've decided to give it all up to pursue better passions that money can't buy (well mostly). I have been blessed financially and know that God will continue to take care of CC and I. I have no need to worry about that. I am extremely blessed. That is the way it is.

Instead of focusing on the time consuming drivel of Internet marketing, I will spend my time researching a new life for CC and I as well as developing some of my favorite passions like music, podcasting and YouTube -- harboring that service side of me. The fun will follow.

Bye, bye affiliate marketing, SEO, Google, eBay Partner Network and Commission Junction. Hello to the hobbies and things I love and will nurture. No stress and permanent vacation.

My goal: maintain quality of life and enjoy every minute of it along the way.

Life is good.

Getting Back on Track

Fatigue has finally hit me and kicked me in the butt. I took a first dose of Provigil this morning after not having took it since January 14th. It's been awhile and I need to wake up.

I am continuing to recover from my Septoplasty and if I had to do it again--I would in an instant. really no big deal and I can already feel more air getting up the right side (which is nice).

Cecilia and I have been having a lot of fun over the past several days doing some dreambuilding and looking at houses and life around Tampa, Florida. It looks like one of the perfect spots for us and to me, this is extremely exciting. We are seriously exploring it.

Excited for sunshine and beach ... you bet! This gray day, snow stuff has really gotten to me.

Septoplasty - 9 Days Post-op

This is a simple update to my Septoplasty surgery. I am keeping my body temp under control with lots of water and ice packs--this keeps MS at bay.

Septoplasty Post-Op

This video was made 1 day post-op after septoplasty surgery.

No Provigil the Past Few Days - a Wet Noodle

Life not taking Provigil is VERY hard. I have no reason to NOT take it except that I remember when it's too late. I turn very tired and it's difficult to function. The middle of my day is shot and I end up napping for 3-4 hours and being very groggy.

I am getting ready for my Septoplasty surgery which is supposed to be on Thursday. This is a reschedule. All for a reason.

I am ready for it and taking a hiatus from martial arts resting my shoulders and neck. I hope to be able to hop back into it without a lot of trouble. It will definitely be modified.

Follow me on Facebook

I have been finding old friends and a nice connection on Facebook, please follow me there and become my buddy.

Things are going well and just prepping for a Septoplasty surgery (I am finally having it). No big deals.

No news is good news.

Busy Schedule - No Energy to Commit

One of the toughest things about having MS is the desire to want to commit to activities around the holidays. Parties, New Year's toasts, birthdays .... etc. It's tough--try as I might, there is a bit more slippage as each year passes.

Today, despite my efforts with Provigil and coffee, it's been difficult to lift my body ioff the couch and I've been dozing all day. Cecilia and I had plans for the evening but have had to cancel. Pain and fatigue have been heavy duty today.

I still feel guilty sometimes, and that is more counter-productive than ever. My life right now should be and is crafted to be as stress-free as it will ever be. Finances are taken care of (thank God), I have the most loving and supportive partner and family, and I have my health needs taken care of from A to Z. I am blessed in every way. But I'm still tired and deal with pain most days. Some days the medications don't work--especially for the fatigue. Cecilia said it right: "Some days you are just going to be too tired to do anything, Peanut ... it's ok".

She's right. She understands the situation.

The holidays are tough for everyone. Although I would like to do more activities than ever, I cannot and that's just the way it has to be. Tonight, I am a home body.

Wishing, from a distance, good health and happiness to my readers.

Happy Christmas Eve

I guess the best wish for all the MS'ers who check out my blog is to wish that your MS stays stable for 2009.

Enjoy a fulfilling New Year and live your dreams (whatever they may be). :)

Happy Holidays - Keep the Stress Low

I don't know about you, but the holidays are always a little stressful for me. This year I have kept things quite simple thus far avoiding the malls, the parking lot jams and the snowy streets by doing my shopping online. This makes life so much easier for me.

I have enjoyed some nice time with my Dad in person and on Skype (which is like being together). Skype is great. Dad is really sick, but you wouldn't know it. His chemo seems to be working but he is scheduled for a CT Scan that will examine if the Avastin that he is taking to shrink tumors is actually working. The Avastin is part of the chemo that causes a boatload of side-effects. But with Dad, you would never be able to tell. He is fighting his cancer with fortitude and grace.

I think he is a winner already--he is finding the faith he has been looking for and living life right now at a newer heightened spiritual level. It's a joy to watch. I hate to see his body fail him (although he looks great), but love seeing his spirit begin to soar.

It's pretty cool and I am learning some lessons about life.

It adds to stress, sure--but I pray that things stay stable with my MS and I can just enjoy life as it is now.

Happy Holidays all!

Buzzing Legs and feet .... pain.

Just having some of the annoying buzzing in my left leg and pain on my left side, shoulder and neck.

Annoyances. I feel like my Blackberry is buzzing underneath the skin of my left ankle, foot, calf. Time for Lyrica and my evening meds.

Snowbound here in Malta, NY.

Going nowhere

Some Swallowing and Slower Esophageal Motility

I know that header is a little wordy and probably strange--but I deal with motility problems in my esophagus that make swallowing difficult at times. It's strange, but if I swallow a bite that is a little larger than I should (something like a peanut butter sandwich which has been a comforting staple of late) it just gets stuck right in the middle of my esophagus (right between the breasts). I don't mean just a little stuck, I mean REALLY REALLY stuck for over a minute. And believe it or not it is extremely painful.

I do not have reflux or heartburn or anything like that (thank God), I just have slower motility and a dysphagia. The VA calls it "10th Cranial Nerve Paralysis"--that sounds really sucky doesn't it? Anyway, I need to be careful with that and try not to eat too quickly. Things to keep in mind!

Life has been going well and I am having fun on my inversion table. It feels good but is not really providing relief for my neck--I find it wonderful for the lumbar and sacral spine and really feels that it decompresses and stretches me out. Really relaxing actually. I am still using my little traction device for my neck. At some point, I might need something a little more robust than my Trac-collar, but for the moment it is working.

Happy Holidays to all! :)

Taking care of my Spine ....

I've been doing neck traction using my Trac-collar which has been helpful in relieving the pain in my thumb and the numbness that was traveling down my shoulder, bicep, forearm and thumb. It's been remarkable.

I decided to carry it one further and buy an inversion table. It arrived today and I put it together and have been on it 3 times already and inverted to 40 degrees so far. It really is a nice release, relaxing and I know helps with decompression of the vertebrae. Cool.

Right now I am taking a break from Combat Hapkido because of another recent shoulder injury (the mats are a little too hard and the movements are rough and less gentle). I will continue on a limited basis with Modern Jujitsu/Integrated Self-Defense Systems with Sensei Borter come January. I won't have two systems fighting against each other so hard and I can learn one at a slower pace and take time to perfect it.

I also think that the inversion table will help me with my flexibility and strength over time. I think I am really going to like it.

Happy Thanksgiving - Sharing with the Community

Happy Thanksgiving. It is wonderful to have things to be thankful for.

Last weekend, Cecilia, Chris Guiry and myself under the direction of Sensei John Borter had the chance to teach a brand new curriculum geared towards young girls aged 6-12 about safety and awareness. The curriculum was called ABC Child and Safety Awareness Program and it was developed by Sensei John Borter. The main precepts for the class are the following:



Awareness
In this segment we discuss the difference between GOOD GUYS/BAD GUYS and STRANGERS,
an important distinctions that many children do not completely understand. We also discuss the
importance of self-esteem, posture, and attitude and how this can be a deterrent to strangers looking to approach then or engage them in conversation.

Boundaries
This segment deals with a child’s ability to set up and keep a safe distance from strangers, avoiding a stranger’s approach, initial reactions if approached by a stranger, and tactic they can use if chased by a stranger.

Contact
This segment is typically considered the “self-defense” portion of our training program. Your children learn simple, and effective “last resort” escape techniques and tactics in the event of a physical hands-on situation such as a grab, bear hug, or an attempted abduction.

Cecilia and I are going to work toward becoming a certified instructor (will be certified Assistant Instructors first). We would really like to bring a curriculum to college campuses though for women to assist them. I love that side of martial arts and the service side.

It's pretty cool. Celia and I just tested for our Green Belt in Combat Hapkido which went a lot better than I expected (no injuries). I look forward to moving deeper into Modern Jujitsu that might get a system rename to something similar to "Integrated Self-Defense Systems" which I think goes right to the point.

Why all this talk in my MS blog? Because life for me now is growing larger than MS--and that is the way that I think it should be.

Sending prayers to any reader who seeks them.

Easing back into Martial Arts - Some Limitations

I have spent the last week easing back into my Combat Hapkido and Modern Jujitsu (to be renamed to something incorporating self-defense in the name). Very cool stuff.

My neck is doing pretty well with things, especially avoiding forward rolls/tumbles. I was able to handle the rest of class (including falls) without any harsh pain. I think my rest has paid off.

I am glad to be back doing some stuff. On Monday, CC and I take our Green Belt test in Combat Hapkido. That will be a nice accomplishment. As for MS, life is stable. As for Dad, he is really hanging in there and doing the best he can--but he sure sounds WEAK.

I'm going to try to get up to see him and watch the Redskin game with him on Sunday.

Neurologist - Moving my Care to the VA

I had a wonderful MS Specialist by the name of Dr. Neil Lava. Dr. Lava was brought into my life to help me navigate the initial phases of diagnosis with MS. He has since moved his practice to Emory University in Atlanta to be closer to family.

At this point though, he has been irreplaceable and all of Doc Lava's patients were farmed off to the other Albany Medical Center Neurologists.

I have made the decision recently that without Dr. Lava's care, I have no reason NOT to move my neuro care to the VA where they are focusing on becoming Centers of Excellence for Multiple Sclerosis since the VA has seen a rise of cases.

I guess it is worth centralizing my care--even my spine care. I have discovered that I have degenerative disc disease from my motorcycle accident (what a bad whiplash). I am dealing with the pain and will be going to a pain management doctor at the VA. I may be able to get some injections to help with some of the neck pain--the rule is, I want to be able to do my martial arts.

On another issue that has been stressful but could be a LOT worse is my Dad and his cancer. I accompanied him to his chemo treatment today (about 5-6 hours worth of cocktails) and he is such a trooper. He is feeling great and the nurses and staff at the hospital really love him.

He is lovable and he is a survivor--I see him living longer than the norm. Dad's a fighter.

Attitude of Gratitude with MS

Fight to live the best life you can as an MS'er.

Herniated Disc - Dealing with it

My mood has been a little off because of my lack of being able to get in my martial arts activities. I have a herniated disc at C5-C6 and it's causing a bunch of symptoms which are turning more towards pain in my thumb and hand.

I have to wait until 11/17 to have my appointment with a spine specialist. In the meantime, I do have a neurologist appointment and will bring medical records on the issue of my neck. I really don't know how the two will play into each other--but I need to make sure that there is communication between the doctors.

Currently, I am doing the conservative therapy that is recommended for herniated discs:

- Ice directly on the neck and nerve
- Traction using something called the TracCollar
- NSAIDs (Ibuprofen) and Lortab towards the evening to help sleep along with Klonopin

These are helping for the meantime and I hope will be the cure--I know I have some degeneration at the c5-C6 level (showed on the X-rays) which probably comes from my motorcycle accident in 1984 when I was in the Army. The only martial arts activity that could have contributed to some exacerbation were a few forward rolls as I was learning. But I had no neck pain at the time. The ONLY incident was the shoulder hyper-extension back in August. But I don't see that effecting the cervical discs in my neck. In fact, the Sports Doctor Ortho-guy (Dr. George Silver) mentions that my radicular symptoms are neck related and have nothing to do with the labrum injury and impingement shown on the MRI arthrogram. I think the shoulder pain and hand pain I am experiencing at times (along with numbness) is neck related. Ok ... so how do I fix it so I can get back to martial arts?

Someone please tell me???

MS and stress seem to be under control. My Father had his first treatment of chemotherapy and is dealing with that as expected. We talk every day and I know I need to spend more time with him.

Talk soon!

Sinus Day ...

Sounds like some kind of strange holiday--but it isn't.

I'm waking up with coffee and my Provigil and am going to get ready for my ENT (Ear, Nose, Throat) appointment where we discuss surgery.

November might be a good time--maybe sooner. Depends on my belt test in Combat Hapkido (although I know I can make this up when I need to).

Priorities. One of them being making it through the Winter without getting horrible sinus infections (or colds/allergies) that turn into sinus infections because the gunk cannot drain. The surgery is very mechanical and should open me up. It will also make my voice less nasally which personally I will have a lot of fun with.

I might even actually start singing again--the thing I have threatened and wanted to do for over a year. My Dad enjoys my singing and it would be nice to do something for him.

Pain in the Neck - MS or a Herniated Disc

Along with a labral tear, some fraying of my rotator cuff and something they called tendinosis along with a supra-something kind of cyst ... the Orthopod also things I have a herniated disc in my neck. It makes a ton of sense given the numbness and pain in my shoulder, arm and thumb.

I went this morning and had my MRI ... I even got a DVD of all the pictures and it looks like I DO have a herniated disc bulging a bit in the C5 region. Looks kind of textbook-like except that it does not look as extreme as some of the pictures I see. We'll see what the report says. But symptomatically, it makes a ton of sense.

Good news is that the doctor thinks that all of my shoulder stuff is not from one trauma but from several traumas. He is not anxious to jump into any surgery (more conservative) as he thinks that we need to take care of the neck first and then deal with some impingement issues probably through rehab and PT.

Onto another body part -- I have a sinus (ENT) appt. tomorrow and they want to discuss sinus surgery with me to open up some of the blockages that cause a boatload of problems with me and my asthma and chronic sinusitus. I live off of Z-Packs (Zithromax) and even have two of them in my medicine chest because I know what works when stuff in my sinuses just does not drain and causes a nasty infection.

What the hell .... what is a little sinus surgery. Get it the heck out of the way and help some of my snoring (poor Cecilia now really notices snoring and I hate that so much). I feel one of the best gifts I can give her is a good night's sleep without snoring. I'll go under the knife any day if it will help that among keeping me clearer from sinus infections which really are disabling at times.

Ok ... so tomorow we go to consult with the ENT.

I think I already mentioned the stresses around my Dad and his Colorectal cancer (Stage IV). This is rough stuff but I am proud of my parents for taking it so bravely and in stride. I think that chemotherapy should be a good option for him and we are praying it works and really takes. The stress of this cannot be understated with MS. I just need to be aware of symptoms and try to understand if what I am experiencing is MS-related.

It can get confusing.

One thing is for sure. The pain really stinks and can be unrelenting.

Catheters -- Just a Part of Life ...

THIS POST IS ABOUT CATHETERIZING & BLADDER ISSUES--READ AT YOUR OWN RISK :)

I reached the point today where I was down to my last half-dozen catheters. That doesn't happen often because I tend to order 3+ boxes at a time to save on shipping and have a hefty supply. I've been using them now since 2003 probably and they really are just a part of my routine and life. The problem arises when I DON'T have one on me (my whole little kit with alcohol wipes and hand cleanser) and I am forced to throw it out with one use. That stinks--but it's my own issue I guess because who wants to go to a public bathroom and rinse off a catheter with the thought that someone might actually see you? Not me I assure you.

I may be brave enough to self-cath but I am barely brave enough to show that side of me to the public eye. I don't think that I have to either--so I know my catheters are quite disposable (an expensive habit indeed) when I am out in public or traveling. I account for this, no biggie but just something that came to mind so I thought I would write about it.

I just ordered 3 boxes of my favorite catheters (and I have tried many, believe you me).

Rochester Medical 6" 10 FR - Ref 61310

I like the 10Fr (even though these are pediatric) because it's just an easier fit and I don't need lube. Lube is just messy stuff. I tried the small packets but it was messy and wasteful. And I am not into carrying around a large tube in my purse. The Rochester caths are kind of smooth and can work with a little water or even without it (my uro-gyn would yell at me for that). Find your own way of doing things and you'll do just fine.

Not sure why this is such a urological post--but peeing is just a part of life and unfortunately for me and many other MS'ers, without our mechanical aids, it becomes an all-too-long bathroom break. For me, cathing is second nature. My partner has seen me do it, my sister was at one time curious (mind you, I am very modest but not afraid to educate). It's easy and most of the time completely, utterly painless. The urethral tissue is sensitive, so the pain I feel on occasion is because I did not take the time to wet the catheter first. I'll take the blame.

In the summer I tried to move these posts away from medical issues and focus on life. I'd be one of the first ones to not want to make a "career out of MS" but it does pervade just about everything I do. I mean, right now I am dealing with a shoulder injury and a darn impending surgery that requires repair. I am dealing with numbness that is going to both hands and it is difficult to know what is MS and what is not??

Just have to be patient and wait to see the ortho doc.

Just a part of life--like peeing is.

MS Symptoms - Numbness and Stress

Take a nice dose of stress and some numbness and add a dash of fatigue and you have the recipe for a tough day--or one where it's really difficult to get moving.

I've been sleep better with the help of Klonopin but neither coffee nor Provigil is really waking me up to the level that I would like to experience. It almost feels like old times being hypothyroid--I am hoping those TSH numbers are better this time around. I just had fasting bloodwork this morning.

I think I will just settle down for a little nap and enjoy it. I've done my errands and my shoulder is bothering me. I will look forward to taking care of that before anything with my sinuses.

Talk soon and VERY EXCITED the Red Sox could hold on last night and rally from a 7-0 deficit. That's just crazy and magical.

I love those Sox!!!

Torn Labrum, Tendinosis and Messed Up Shoulder

My left shoulder needs to be repaired and my arthrogram MRI showed several injuries and I will meet the shoulder doctor (specialist thank goodness) to discuss surgery. In my case, surgery seems to be the only option to keep the shoulder in shape and prevent further dislocations.

There was a Hills-Sachs lesion and I now have a posterior labral tear and will have to deal with that.

The most depressing part of the issue is not the surgery but it is missing martial arts classes. I love MA and know I will have to take things slow.

My father right now is in good spirits and we are awaiting a new plan that involves a PET scan and Chemo versus surgery right off the bat. I like that--it makes more sense.

I'll keep you updated on stuff. Lots going on and just trying to keep a cool head and control my shoulder pain.

Dealing with Stresses ... Trying to Stay Positive

We all have our own problems to deal with in the health arena--and you've learned about my shoulder which I will deal with tomorrow with my MRI arthrogram. No biggie.

Today I also learned that my father has Stage IV Colorectal Cancer with metastases to the liver. Hearing that is not good news ... but Dad's a fighter and so are his family. I went with my Mom and Dad to their surgeon's appointment and the surgeon was straight up with the diagnosis and what it means. No pussy footing around. This whole thing causes a lot of stress but I also have a lot of faith and a positive attitude. This is how people survive and beat the odds. I need to also beat the odds for myself and not let stress throw me into some funky relapse. Not needed ... period.

We are about beating the odds. Dad will be having surgery within the next week or two to have the cancer in his upper rectum removed. Before surgery, they are working on getting a fine needle biopsy of the liver tumors to see what they are (as well as a PET scan). This doctor--Garner Johnson--seems like a very capable and good GI doc.

If you are reading this, please offer a prayer.

I'll be in touch.

More Numbness -- Shoulder Sore

I am lightening up a little on the martial arts until I can work out the shoulder issues. After the arthrogram MRI, I should be able to get a Cortisone shot which I am pretty sure will provide some relief. With that, I will work extra hard on a strengthening program.

Right now I know I am dealing with the extra stresses of my father and this can cause exacerbations ... I will do everything I can to try to stay positive and relaxed.

I am enjoying watching the Boston Red Sox in the post-season and hope they can make it to the World Series, that would be extremely exciting!

Pain is the Name of the Game

I called my Sports Ortho Doc this morning since the VA never got back in touch with me about my left shoulder. I was hoping that I could push everything through the VA but this is SERIOUSLY bothering me and the pain is getting more difficult to deal with (2 Percocets don't even quiet it at the moment). The Doctor did quite a bit of manipulation and also determined that my C-spine (neck) is involved with causing some of the electric shock feelings that go down the bicep to the hand. They took some x-rays of my neck and said there is some arthritis there but nothing overtly bad. They said they would work on my neck after they figure out my shoulder. One thing at a time -- and actually, MS could be throwing it's flames into the fire too.

Anyway, they suspect that I have something called a "Labral Tear" in the shoulder and have scheduled me for a special MRI called an "arthrogram MR". Like my normal MS MRI's, they will inject a special dye into the shoulder joint and see if there is any leakage. If there is leakage, this shows that there is a labral tear. There are two common ones called a Bankart lesion and a SLAP tear -- they differ based on location of the tear. Both of them are a BUMMER in the largest sense for someone like me who wants to do martial arts. The good thing is is that I am working with a sports medicine doctor (group of docs) who understand the importance of this in my life. It is important -- but the truth is, I am in a tremendous amount of pain and I need to get that under control. Period.

I'll be getting my MRI on Wednesday 10/8 and should know results pretty quickly. I get the sense I am in line for some type of surgery. Will I let it stop me? Nope, I can't.

Never give up your dreams and keep going even when you fall down (or are thrown there).

Modern Jujitsu & Combat Hapkido -- Some Shoulder Issues

As you may have read in the past, I've had some various shoulder issues and I am not sure what is martial arts related and what might be MS.

When I played ice hockey in 2003 (not long after my MS diagnosis), I had a left shoulder dislocation and something called a Hills-Sachs Fracture which resembles a divot. Well, during an Orange Belt test in August for Combat Hapkido I was working with a partner and grabbed him zealously with 2 hands (tres bad on my part -- what was I thinking??). He just as zealously took me down and my left shoulder hyper-extended backwards (as I remember it) and the triple pops and pain brought immediate tears to my eyes. I felt like I was going to puke (sorry for the graphic) ... but I made it through the rest of the belt test in a tremendous amount of pain. The belt test lasted about 2 hours and was very physically demanding for me (especially given those loud pops).

I know I have a somewhat compromised left shoulder given the fact of that silly hockey injury. Right now, I feel like I am dealing with a shoulder impingement of some sort and although I have been resting it and stuff, I have a new sensation of electric shocks (feels like TENS unit) going down the bicep, the forearm and into the thumb and forefinger. It's strange .... is it shoulder or is it MS???

I need to relay that this feeling is new. I also need to relay that my Dad was just diagnosed with Colorectal cancer last week and has cancerous tumors on his liver. This is tough news and it's tough to see parents grow older. He has a tough fight ahead of him (as does my Mom) and the family. We are dealing with it the best way that we can and Dad is trying to do the best he can ... but I know that he is anxious and afraid. We are trying to stay strong with him and find him the best doctors to give him the best opportunity for life.

This kind of stress brings on exacerbations and that is why the shoulder is kind of fooling me and playing with my head. I will treat it with an orthpedic doctor (as I have been) just to make sure there are no pinched nerves or anything. They can shoot me up with Cortisone and that is always a good diagnostic indicator. I would truthfully welcome the pain relief.

CC and I are back from a quick junket to Vegas and I had two good (no, great) Craps sessions that made up for my losses. I came out a little ahead. It was fun ... but I was popping Ibuprofen like M&M's. Hey, I am not going to be stupid. But I am not going to stop what I am doing either. I love martial arts and the distraction and physical push are everything I need. Truly!

Tonight we have Modern Jujitsu training with Sensei John Borter who really rocks. Tonight, dynamic finger locks so I better warm up my hands :) The man kicks butt!!!!

Optic Neuritis and Neuro-Opthal Doc Appt. Yesterday

I went to see my neuro eye doc yesterday and got a good clean bill o' health in the area of the eyes. I have a little bout of optic neuritis that is still healing but is no big deal.

It's all good. A new eyeglass RX, visual fields which looked good and something called a CTS which looked at optic nerve fibers which looked good too.

My eyes are in good shape and Copaxone is doing it's stuff.

Yahoo!!!

MS Fatigue, Provigil, Klonopin and My latest YouTube

Shoulder Status ... It is Going to Be OK

I went to go see a shoulder specialist after a couple weeks past my belt test. The story is summed up that I have laxity in my joints: both shoulders included and that I dislocated the shoulder and it is back in place. I need to work on strengthening it and keep doing what I am doing.

I got the "green light" to do Modern Jujitsu along with my Combat Hapkido and I am very excited. I am really looking forward to it. I am going to have to work on some of my forward rolls since I've always been somewhat afraid of these and now that I AM learning them, I am getting a little dizzy. Kind of funny.

It's a good challenge for me.

Well, CC and I made it through and received our Orange belts a couple weeks ago. It was a very nice accomplishment and felt really good!

Pain and MS

I am dealing with hypothyroid symptoms and cannot wait for my new Synthroid dose to come in the mail. Geez!

I've been dealing with a lot of joint pain (pinky, hands, elbows, shoulders and knee) that are depressing and making me depressed. I recognize how labile my mood can be under these circumstances and really am thankful for the love of my partner CC. My sense of humor is kind of non-existent and anxiety kicks up it's heels too as I face my own demons of guilt for whatever ....

Mood issues are very common with hypothyroidism as is joint pain. So I am going to blame it on my thyroid and some on MS. Double-whammy.

I take Hydrocodone once a day for pain and to help sleep and will be starting a trial of Klonopin (and stopping the Buspar). It's difficult to juggle MS-related mood issues and issues caused by thyroid.

Just a part of life and I am dealing. Taking it easy and staying cool. I am looking forward to throwing myself into Modern Jujitsu (MJJ) along with Combat Hapkido but know that I need to get the skinny on my left shoulder and make sure things are ok. CC and I know that MJJ will complement our Hapkido and vice-versa.

It should be a blast! I need to get the doctor green light. Thoughts of this (even though I am in pain right now) actually help. I'll push myself and try to do it safely as much as I can. I like and need to really have those things in my life that move me outside of myself and challenge me.

Lortab is taking effect now (5/500) and I am beginning to feel better and more energized. My doctor told me that the "energized" is not from the medicine as much as it is from the pain relief.

Ain't that the truth!

Shoulder Issues - More Martial Arts

I am loving my time in martial arts--and I know I am pushing and challenging myself in great ways. Cecilia and I are also looking at adding a Small Circle Jujitsu class to our repertoire.

Right now I am dealing with a shoulder injury from my orange belt test (a hyperextension that happened from an overzealous take-down). I have been resting it and it's still pretty sore.

I need to find a way to strenghten the muscles around the shoulder capsule so that I can avoid these types of injuries. I really love doing martial arts--and need to keep it in my life.

I'll do what I need to get things up and running.

I have just been staying cool and keeping the stress low. Same stuff that helps a lot.

Update on Life ....

I have not spent as much time on this blog as I would want to. Things have been busy in a good way and I have been working on other ventures -- including writing an eBook on "Attracting Abundance" (if you recall "The Secret" ... it takes that line of thought).

The latest news on the health front:

• The Sjogren's tests were negative (yeah ... one less thing to deal with).

• I am STILL hypothyroid and have been given an increase Synthroid --> from .125 to .137. This should help me a lot. I was told I was within range by a nurse ... my doctor clarified differently to me. No wonder I can't seem to drop weight AND I am fatigued as heck.

• I injured my shoulder doing my Orange Belt test with a higher belt who got a little zealous in a takedown. Possible "impingement syndrome" but no fracture. Wait and see if the inflammation will go down.
  

Things are getting better. BUT, I think I still have a bit of distance to go to get my thyroid at the right level.

On the sleep front, I will be taking Buspar out of my pillbox and replacing it with a "right before bed" dosage of Klonopin of .5 and increasing to 1.0 or 1.5 as needed. This is supposed to relax my muscles, cause some analgesic affect, help anxiety somewhat and help me to sleep. The Alpha Wave Sleep Disorder appears to be caused by pain.

Good news, as mentioned -- I have been writing an eBook on the Power of Attraction - http://www.AttractingAbundanceNow.net

I actually put the principles to the test this past Saturday and won a $5,000 jackpot. VERY COOL. The stuff works. :)

Lupron Shots and Endometriosis

Sjogren's Syndrome Screening

I have been doing well and have not been very good at visiting this blog. I find myself writing entries on other blogs that don't have to do with my health. Sometimes, my health is the last thing that I want to think about. I am sure you know what I mean ...

I went to see my allergist and asthma doc the other day and we were discussing dry eyes and dry mouth. These are things that I have been plagued with for the past few years. Last summer my mouth got so sore and my gums were irritated and painful .... it was strange, but I did not know what to make of it. I have also dealt with dry eyes over the past several years and even had a punctal plug placed in the tear duct of my right eye. This has helped to keep the teas in the eye versus running down my face. I think I will have the left one done as well.

The reason I bring all of this up is because they are classic signs of Sjogren's Syndrome (sounds like Show-grens). This is an autoimmune inflammatory disease much like Lupus is. It also happens more commonly to people who have Hashimoto's Thyroiditis (the thing I have).

I am waiting for blood screening and will make sure that this gets taken care of. The weird thing is is that Sjogren's can mimic symptoms like MS. This is something that will need to be explored.

That's all for now ... just wanted to update.

Muggy and hazy ...

It's a muggy day and I am really waiting for Provigil to work a little better. It isn't bad .... it helps a ton ... but on these muggy days it is difficult to get on top of things.

I am just contemplating going out for a swim. CC and I have martial arts tonight. We have not been for a week. It should be fun :)

Out to the pool, I am not going to think anymore about it. I am just going to DO IT!

As my martial arts instructor says: "you think, you stink" (this is in relation to reacting to different grabs and holds -- it's better to do something than to spend time thinking).

Ciao!

MS Fatigue and Crackberries

Doing what I do, and having fun ....

I have been in the process of moving away from this blog a little bit. I am sure you can see that by the less frequent postings. I have been posting in other places and on other blogs -- I'm a blogger by heart and really enjoy it. Maybe I'll even take the time to discover how to make a few bucks by blogging -- there are ways to do it but it needs to be done right.

Today is a gorgeous day and I am not going to waste it. My pool is a sparkling blue and I have been taking good care to keep the water chemistry balanced. This is the 3rd season (I think) of us owning this house and pool and I believe that I have finally learned how to take care of it and balance it. It's such a wonderful and useful commodity as an MS'er -- I am trying to use it as much as I can to supplement my martial arts work.

I am also keeping a sleep log on the advice of Dr. Herb Scherzer who is my sleep doctor at the Albany NY VA Hospital. With the alpha-wave intrusions, we are going to see if we can track any patterns. He mentioned that Lyrica and Lortab are the types of medications (headed in the right direction) to minimize those. Pain or something is triggering my brain towards this wakefulness. That's no good ....

Anyway, I have also been having fun selling a couple iPhone's on eBay and migrating back to the Blackberry (got CC and I Blackberry Curve's). What a FUN platform -- I am in the midst of playing with them and looking at hacks. Playing with gadgets is a definite favorite pastime of mine :)

Sleep Study - Doctor Just Called Me

I have been remiss with visiting this blog. Life is going well ...

I just spoke with my sleep doctor and he stated that I do not have sleep apnea or restless leg syndrome -- I have something called Alpha Wave Sleep Disorder -- I have a lot Alpha Wave disruptions and these keep me from getting restorative sleep.

I go to see him on the 22nd of this month and we will discuss more strategies.

I need to do some research on the topic, and try to understand what it is about.

Doing Ok ... Focusing on other things

I have been spending my time focusing on other things and trying to work on my affiliate programs and earning more.

I'll be back soon.

Sleep Study Tonight

A touch of Optic Neuritis -- my nemesis

I am not sure what brought optic neuritis back on my plate but I just went to the VA eye clinic and my eyes were quite poor (20/200 in the left) and they can't seem to correct them past 20/50 (which really stinks). They are in the process of getting all of my medical records from my normal neuro-ophthalmologist to look at visual fields and what not.

Are you an MS'er who has been through ON? Me, way more than I care to explain here. It is one of my main nemesis.

In the area of fatigue, I have been having some decent luck with Provigil. Now tomorrow I have to go for my sleep study (that should be about as much fun as a root canal) and I am not allowed to take Provigil today or tomorrow.

God help us!

Happy Fourth of July!!!

Out of touch ...

I have just been trying to fight the sinus thing and really haven't had the energy to sit down and blog much.

I have wanted to sit by my pool but the weather has been lousy. I am praying that we will enjoy some nice sunny days this summer and get the chance to swim.

I realized HUGELY that the cause of my sinus infection this time was irritant second hand smoke which really played havoc with me this time. CC and I went to a local Indian Reservation Casino called Turningstone (I wanted to play some craps and she video poker) and although we came out winners ... the smoke exposure was just TOO much for me and really caused the formation of bacteria in my sinuses. I was able to recognize the situation and start antibiotics right away.

I always have an extra stash of Zithromax for that. I have to put a stop to the thing before it turns into pneumonia which is my MO.

Just an easy day planned, or not planned. Will watch the Red Sox this afternoon and just chill out. The same thing that I have been doing for the entire week.

Sinus Infection - On Antibiotics

I have to put Hapkido on the backburner for a few sessions as I get through my antibiotics and my sinus infection.

It makes the septoplasty a very real possibility once I am cleared with my thyroid levels (and anesthesia). It seems like it would help me have less of these sinus infections since that is one of the complications of a deviated septum.

My goal now, get through this initial infection, keep it out of my chest (asthma) and get back on track!

Feeling a little lagged ...

It's been a fun few days .... but something is catching up with me and I have a wicked sore throat, ear ache and headache.

I'll take it a day at a time.

I was reading an article on Time.com that caught my eye. It is called

"What the Gay Brain Looks Like"

I am gay and married my partner Cecilia in Massachusetts in 2005. We married in North Hampton and although we were residents of New York, we had a timeshare in MA and a wish to move out to MA. some day. I lived in Boston for 4 years and loved Beantown. It's probably where my soul is. Anyway, I thought that the Time.com article was interesting -- it talked about the symmetry of the two halves of the brain and that in homosexual women it tends to be asymmetrical like straight men. Go figure?!

This made me pull out the DVD that was created for me recently with my MRI images on them wanting to measure the halves. It isn't very clear to me but perhaps there is a little asymmetry. I believe wholeheartedly in a biological basis for being gay. It isn't something I really chose for myself -- it's just where my heart is and where the emotions are. God knows I have been engaged enough to know I wanted it to work ... but the click was NEVER EVER there.

Anywho, I was looking at my MRI images again and caught another gander at my deviated septum (WOW). CC woke me up last night because of snoring (sleep apnea most likely). I think my TSH is getting evened out so that I can again contemplate a septoplasty & turbinate reduction to fix that along with my sleep study.

I'll need to evaluate how much that little apnea machine will do for me once that kind of thing is figured out. I am vacillating between wanting to have that correction done and putting myself under the knife for another time. Perhaps if the machine helps me to sleep better and I can keep on my medications and stay away from sinus infections, I'll have less reason to have to do it.

Anyway, nothing I have to decide today ... just something that I thought I would mention.

The deviated septum is interesting, it looks like the Amazon river to me.

Feeling good but prone to fatigue

I've been dealing with a lot of fatigue lately (especially when I don't take Provigil). It's amazing what this can do for me and how it can totally wake me up and make me feel like I am a part of the world.

Fatigue affects me in really bad ways and makes me withdrawn, shy and reclusive. The exact opposite of what I really want to be. I WANT to be sociable and get out and socialize ... but if I am struck down with fatigue that kind of stuff really doesn't matter all that much.

I forgot my Provigil the other day (it was too late in the day to take it) and I really pooped right out by the afternoon and ended up with a big migraine and a dropping left eye which is still drooping and one of those MS nuisances.

My neurologist told me that I need to go see the eye doctor (Dr. Natalie Lopasic who is a neuro-ophthalmologist). I just need to clear the insurance path about seeing her or at very least getting into the VA to see the eye guy there although he is not the same type of doc. I still would like to have everything documented by the VA which is a good thing since I am service-connected for optic neuritis.

I'm rambling and yawning at the same time.

Back to waking up. :)

Beautiful Day -- New Ink "Indomitable Spirit"

I decided to get the new ink that I have been contemplating for the past 7 months or so -- the one that says "Indomitable Spirit" which really means "having the spark to persevere."

I decided to get it on my foot to symbolize the "journey" and allow visibility by me. It's part of the walk and will help remind me to dig deep within and outside to find the strength to "keep on keeping".

It's been a good day and I am just chilling out this evening. I was able to walk around Lake George (it wasn't to hot) because I had Provigil and my MBT shoes which are really giving me a new lease on walking about.

Remarkable stuff and really amazing.

Provigil Helping Me to Live Better

I really believe that Provigil (I am taking 100 mgs now) is helping me to function much better throughout the day. I take it almost every day now as I have different things that I need to do that involve attention, socializing, etc. It's even amazing that I am able to really focus on reading books now much better. My short term memory really suffers under the weight of fatigue.

On another note, I think my thyroid (TSH) is moving within the normal range. I'll see my endocrinologist in July along with my sleep study (I can't wait for that).

Achoo!!!

I can't think of a better title for my blog post today than that. I woke up sneezing like crazy with allergies in high gear (and I am already on a lot of allergy and asthma medication). Today we are having a get-together with CC's family (about 10 of us) and we have been getting the house in order. The rest of the weekend is going to be busy with family gatherings which should be nice ... I just need to work through the fatigue factors and figure out how to get things done in a reasonable way.

One day at a time.

Allergies and sleep are the main thing right about now. Yesterday I was extremely fatigued and I have been waiting for the results of my TSH (thyroid) bloodwork so that I can get hustling with an increase of Synthroid (since I still think that I need this).

One day at a time.

Fatigued Lately -- Trying to Regulate my Provigil and Thyroid

I have stayed away from the blog just because I feel like I am juggling various health issues between MS fatigue and hypothyroid fatigue. Let's just say a bunch of fatigue and bowel issues over the past few days. I think that jumping up to 200 mg of Provigil caused some unpleasant bowel symptoms (but I am not sure). I have downgraded my dose to 100 mg. but it really does not give me enough to make it through the day at a normal pace.

I can't wait for my sleep study ... I am betting this is adding to my daytime fatigue.