MS BYTES - My new MS iPhone Application.

For all of my MS friends and fighters. I have created a small iPhone, iPod and iPad application that is now available in the Apple App Store for free.

It's meant to share the latest updates on medications, treatments and news. There is some basic information at the beginning of the application as well. I'll update as I discover.

Enjoy!

Help me to keep this App free. (I pay Apple $99 a year + tax to keep my Apple developer account alive). Here's an option to donate. Please do not feel obligated in any way. But if your heart moves you, share.

Caught between a hot flash and a nightsweat ....

Oh the joys of menopause. As I try to get some normal sleep (even with the help of medication which assists with sleep), I am stuck with one of those nights where sleep is evasive, hot flashes are rampant and yesterday morning was interrupted by my inability to sleep. Kind of a vicious cycle that is difficult to get on top of. I think I know several of the causes and just thought I would take a little time to update my blog. Regarding the picture ... I don't know if the device is real but I loved this night sweat alarm ... true or false?? It cracked me up!

I am in full-blown menopause having been off my HRT patch since about March or April. I also bottomed out on my Lexapro (an SSRI which can help with menopausal symptoms but was primarily prescribed to help with anxiety and depression which have been part of my disease process). I've been through a few different types of SSRIs and I have had the best results with Lexapro - until the past 5-6 months. Sometimes medications lose their effectiveness and that's just the way it is. I started on 10 mgs. Dad passed away in 2009 and that put me into a full-blown MS exacerbation (optic neuritis) and I was increased slowly to 20 mgs. This worked for about a year and a half and then I was brought back down to 10 mgs to "clean out the receptors". This seemed effective for a short while but just not enough to take away some of the negative affect and lack of motivation. I was noticing (as was CC) that it was taking me longer to get around to things and I seemed to carry the weight of the world on my shoulders without taking the time I needed for me to put up those boundaries that are a necessary evil when dealing with limited energy resources ... and of course throw in a dash of good ole guilt without good reasoning and you have a mountain that becomes harder and harder to climb and looks taller and taller. It's just the way it is ... I do what I can naturally to cope (prayer, meditation, etc) but the body can only do so much and sometimes those chemicals need to be regulated. I carry NO shame whatsoever in the fact that I take an anti-depressant. Like other medications I take (such as synthroid), I need them to function to the best of my ability. So, since the Lexapro has lost it's effectiveness with me we decided AGAINST adding something to it (like Wellbutrin) and going with a new SSRI altogether. The next choice is Zoloft. I will start on 50 mgs and titrate up to 100 mgs after 2 weeks. I am looking forward to feeling like my old self.

Mood is not necessarily bad (at least what I am told by people who see me) but I know where I am and the gift of insomnia is just one of those things that shows me that things are not in harmony as they should be. Chronic pain doesn't make it any easier and I am dealing with some pretty significant health issues. Nothing to belittle ... they are there. My goal is typically now never to really show them to the world (those face to face interactions). But they are there, and this blog is my forum to talk about them. I know I am not alone by a LONG shot and I am sure a reader or two can fully empathize.

A couple of updates:

• It seems like the Bladder denervation through Botox is really beginning to work and I have less of those nasty bladder things that happen in between self-cathing. That is very very good.
  

• I went through my cognitive testing at the end of August and just went through the first of two sessions that involved sharing results. I had baseline testing in 2003 and there were things that did not change and things that did change and moved me into either a "borderline impaired" or "impaired" category. I do have a lot of cognitive reserves through eduction and the fact that I am always trying to learn new things and stay fresh. This makes ALL the difference. My main areas of impairment are the ones that I expected: executive functions (thought organization, mental tracking, etc) and memory. The psychologist was able to distinguish that depression or other life factors are not truly contributory to them -- it's disease process. I am the resourceful type and use technology to help me adapt to some of these deficits. My ultimate wish, develop an iPhone application that will help MS'ers who deal with these types of cognitive challenges to stay organized and keep track of things. We'll see how that goes :)

• A next meeting with the psychologist will involve both Cecilia and I making a visit and discovering perhaps other strategies for adapting that we might not be addressing. CC will also get a "Cliffs Notes" version of the breakdown which will be good. We are a team and she needs to be involved and understand. That's the way we roll. Not that she doesn't already get it -- she's amazing. But a little of the clinical background will help affirm some of the things we have been seeing for awhile. So I really am NOT going crazy. Just part of the natural changes with some mild dementia. Ever so mild.

• My doctors suggest that I consider finding a clinical trial that might deal with a cognitive enhancing medication (most of these are used with Alzheimer's patients). I have not seen any in my area but will discuss with my neurologist given the situation. I don't want to mix medications inappropriately and have actually weaned off several medications in the past year. THIS IS A GOOD THING.

There is a great website called MSIF.org and they have a copy of their magazine that deals specifically with "Emotions and Cognition in MS" .... they put out great stuff. You can grab a copy in several languages.

I could probably go on about other stuff (like the latest on my Keratoconus) but I will save that for a later post. I will try to read and get some rest.

Dernervation of my Bladder via Botox

Today I went for a special kind of cutting edge procedure that should help my neurogenic bladder. After failing on some of the major bladder medications we decided that it was time to take things one step further: using Botox injections via a non-flexible cystoscopy.

It was a bit more of a procedure than I had anticipated given the fact that I had had a FLEXIBLE cystoscopy before and I did not know there was any 0ther kind of scope. When I was told about the sizing (done in "French" or FR) I was going from a 16 to a 23. That's quite a difference and I am glad that I was not aware of it. I did not expect it to be such a procedure at all -- but it was. I don't know how long it lasted, but to me I was out of it, then groggy and trying to wake up. Waking up was tough ... but I did it and now I am home for a day or two of recovery. I'm still under the anesthesia but feeling ok except for the "sting" of a UTI. If you have had one, you know what I am talking about.

This procedure is going to totally denervate my bladder for 4-9 months and will require me to catheterize by the clock 6-7 times a day. The first few days are not going to be the most comfortable (I can already feel that) but within 1-5 weeks I should be feeling some relief without any issues caused by urgency or other embarrassing effects of neurogenic bladder. There is not a LOT of research on this method, but it is out there and I think that I will be happy with the results, albeit temporary.

Just sharing from this side of the table. You may wonder why I had to go to this extreme? The medicines were not effective enough for me to stop problems. This should stop spasms and should help a lot.

That's all. Got questions, feel free to ask them.

VA Comp & Pen Exams - Enlightening

There is nothing more than a major, thorough exam from head to toe that involves Government money (well, in my case not really) that makes you see your disease processes in a new and more intense light. That happened to me today on a couple of fronts.

Firstly, my "Comp and Pen" (Compensation & Pension exam) which are the most coveted exams in the VA system and your pretty lucky if you can get one. It's the thing that an entire VA claim is hinged on. Even though I am paid at "100%" and deemed unemployable ... I am still not "Permanent and Total" and not entitled to caregiver benefits. That's what I am really after given the fact that CC really is my caregiver in so many ways and it just seems to be so more and more.

At the C&P, they pretty much checked me for "bladder" and "Spinal Cord/Nervous System" stuff related to MS ... I was also sent to a specialist for my eyes and optic neuritis and other eye issues (Keratoconus) which have caused my eyeglass prescription to totally flip-flop in less than 6 months. My right eye is 20/400 and left eye 20/300. We were able to correct the right eye to 20/25 with a new RX. But the thing is. the glasses change SOOOO quickly with me. The "axis" is moving around. This seems to have been going on for years with me. No problem though, looks like I am going to be moving to contact lenses (the gas permeable type). I haven't worn contacts since the 80's and I understand that these hard lenses take a bit to get used to. I'll deal with it as it comes. I have decided to move all of my care within the VA so I don't have to deal with outside providers and records and all of that, I can deal with this ... it makes it easier.

There were some MS and sensory issues that were quite surprising and it seems like I have lost quite a bit of sensation in my extremities (light touch and pain sensation as well). That I found quite a bit surprising. The doctor spent a good amount of time poking and prodding with a light thready object and then a sharp object. I felt pressure at some points but not a pain sensation. When I did feel pain it was in two very distinct places. My thumb and the bottom of my left foot closer to the heel. Feet, legs ... nothing. It was strange, very strange.

Somehow through all this stuff I am making it and will continue to do that. I will take my altered sensations and consider them just part of living.

So tomorrow, off to the pain clinic for an anesthesia follow-up and then a long overdue mammo. I have to keep everything in check and make sure I can stay healthy within my parameters. That's the goal.

TTFN

More doctor's appointments than a girl could ever wish for ...

I don't think anyone really wishes for doctor's appointments but it seems that through August and September the Albany VAMC is going to become my second home. I need to just be content and deal with things as they come. No use worrying, just enjoy the day.

Today it's my asthma doc and a Dexa scan. On the 11th I am going through cognitive testing to see where things are at this point. I need to compare things to baseline. I'm dealing with some real memory issues (compound my normal stuff with menopause and you've got the makings of confusion). Lots of cognitive interference and tracking difficulties. If I don't have my iPhone (serves as a PDA) I really am lost. My other, best organizational system is CC who knows me, knows my weaknesses and helps me to stay on track and organized. I could not ask for a better person in my life. An angel in disguise.

Off to the docs ... again ... I try to make my rides (about 50 minutes) enjoyable with good music on my iPod or iPhone or just a good empowering song I will play over and over. Something to put my mood in order (which seems to be doing better the past couple of days somehow) and get rightly motivated to hit the VA with a smile on my face and strength in my spirit. I can never believe I am suffering too much ... especially when I see the faces of young and old Veterans who have given everything. Best to put on a smile and don't let the world know too much.

Update: Post-doctor's appointments. Some really good and some cautious news. For the really good news! My lungs are clear as a whistle and I have to attribute it to the bronchodilating effect of "420". Since using it in a Volcano Vaporizor (it uses a bag and fills with herb vapors), I noticed that while it was killing my nerve pain and sending different nerve signals down my arms and legs to replace the pain ... I was also breathing really well. I mean REALLY well. Deep and clear. I tapered off of my Advair 250/50 which I have been taking for at least 8 years or so and now I have been off of Advair for 3 months. My asthma doctor (a big researcher) was so surprised he thought that maybe it would be worth studying. YES IT WOULD BE WORTH STUDYING and rescheduling and legalizing. I can breathe. I mean really breathe. It acts like Ventolin causing that one, big hack and then the airways are opened up. It's amazing. My Doctor told me that he feels some doctors are so arrogant that they would never consider an alternative therapy -- he is not like that. I've been his patient for over a decade and he has watched me through my ups and downs with asthma. This for me is a huge step. The dilemma is dosing. It is a shame the dosing is left up to me. Please ... medical community, study this medication and it's benefits.

On the other hand, I had a bone density scan (DEXA scan) and it showed a lower bone density in the right hip (but not in the spine). So my doctor called me today (same day as the scan, so I knew there was something going on) and told me I have to take Calcium and be religious about it. Calcium 1500/Vitamin D 800 mgs and do my Omegas and Flax for Cholesterol. I've been using the Barlean's brand which have been just outright yummy.

My bladder and me ... just moving along

I can tell you honestly that the Sacro-Iliac joint injection (nerve block) thingee that I was given about 4 weeks ago to the day has officially worn off. What does this mean? One pretty darn, angry right lower back, hip, SI joint. The moment it is screaming at me and natural remedies "sweet, sweet or laughing herbs" as I have heard called by friends gave me about 2-3 hours of some respite. I've amped up the Lortab over the last 2 hours and have taken one 7.5/500 and one 10/500 and am just looking for some relief here. Can't a girl get some relief. I do not want to vape all night and day given NYS and their silly laws. But I use it as an adjunct to other pain medications and most of the time instead of them. Today I had a migraine caused directly from my neck. My herbal remedy fixed that but can't quite kill the right lower back to the degree where I can sleep. Oh well, if the Lortab is not doing the trick. I NEED to work that out with my Pain Management people. I just can't continue with the neck and back along with neuropathies. It's a bit much.

Today I had Urodynamics testing (it's been since 2002 since my last one) and as I kind of suspected, my bladder really does not have much function at all. They pumped me up with 1300CC's (and the pressures were safe according to them) and I voided with a catheter. I had no ability to "go" without a catheter. You know, it's really, really strange not to be able to control that normal bodily function. That's outright crazy! But what can we do. It's the way it is.

On September 8th, I am scheduled for a procedure (I never like that word) that will involve a cystoscopy (no biggie -- look in the bladder for foreign objects such as pencils, paperclips and even a printer cartridge or two) and then botox injections into my bladder. How strange that will be. The benefit is that it will stop leakage. That's the reason I am getting it. It actually relaxes the bladder and stops those nerve impulses that cause the problem. SWEET. I may be able to stop taking "Gelnique" too. But I will still have to cath and probably be on a schedule.

I should really cath on schedule better and trust my body to just take a schedule instead of running to the loo everytime I FEEL like I have to "go". It's a waste of catheters for one and it's a bunch of false alarms which can be discouraging. What to do.

Looks like the VA approved me for the Botox injections and it should all bode well for my request for an increase regarding the bladder.

I met a nice woman at the VA today whose name was Chanel. She is a young woman with MS who is also service-connected. She is 24 and was diagnosed when she was just 20. She was overseas and feels that SOMETHING ... meaning some kind of toxin triggered her immune system. I could not agree more with her. I also saw one of the fellas - Andy - from the Adaptive Sports program. Three MS'ers in one Urology clinic at the same time. That tells you bladders are a huge deal in MS.

Nothing to ignore. No way. Take care of them and take care of the kidneys.

I have a slew of appointments this and next week from a Dexa scan, allergy and cognitive testing. A barrel of monkeys.

Slump, mood, fatigue, pain .... be gone!

I just got finished reading another blog post from an MS caregiver and she talked about her "slump". I can't think of a better word to define things.

After several years of believing that I was "permanent and total" with the VA, I discovered that I have a check-up exam scheduled for 2015. No big deal, I just put in new paperwork for P&T and increasing severity. I just need it on the record books for the future.

I am so affected by my mood, fatigue and pain and sometimes I have those days of feeling useless. Early surgical menopause DOES NOT help things I am sure, but still ... I'm losing my marbles. I'm probably close to or have clinical adult ADD at this point. My ability to focus and stay on task is compromised almost every hour of every day with distraction and interference. If I could focus long enough to do something tangible (at least that is how it feels to me) I feel like I could get a lot more done. I do read ... but sometimes I am so unorganized I don't even get around to it. I'm pulled away by this and that. CC calls them "clouds" ... I call them interference and distractions. Anything can distract me. A sound, an object, a thought ... whatever. It comes and invades. I'm a "doer" when it comes to intellectual pursuits ... I find it disturbing to NOT have a good handle on that when I want it.

The good part is is that I am going for cognitive testing on 11 August 2010. August 2010 is a month of docs appointments and exams. I also have a Urodynamics test coming up on the 4th because my bladder just SUCKS. If you know what PGAD (PSAS) is -- I've had a bout of that too on top of things. If you don't know, I am not going to go into it here. It's a bit embarrassing and completely misunderstood (even new to my gyn doc but not to his resident). My doctors and neurologist know about it and Clonazapam seems to be one of the only potential helps to it. Thank God it has quieted down. Pretty darn HORRIBLE. PGAD stay away!

I have everything to be thankful for, and somewhere deep inside I am very thankful ... I really am. It's just a mood that has been persistent for about 2 weeks now and I'm working on trying to shake it. The pool is a blessing. Some of it could be attributed to less painkillers (more pain but agitation too). In moderation, I am trying an herbal route. I am working on supplements to lower cholesterol which has jumped despite weight loss and a good change of diet. We are pushing the Omega, Flaxseed route.

Ok, so I vented ... I can almost say I feel better now. There are good days and bad ones. Days where fatigue body slams me or other days where I feel useless or in pain. The ups and downs are a part of living and I know that this too shall pass.

Thanks for stopping by, just saying hello!

The Summer means heat and all that goes with it ...

I am finding myself having to use my pool a lot more in order to take control of my spine and muscles. I need to strengthen my muscles and work on that to improve mood and pain. The water is my best friend at this point and I have found a lot of good benefits from both my pool exercising and my pool floating and relaxation. Even though New York only affords about a 3-4 month pool season, I am going to treasure it nonetheless.

But with Summer come other issues that I have to deal with as a result of the heat ... good for all MS'ers to remember in case it affects you in the same way it affects me. I can be tough:

1. Blurred vision - any raise in body temperature really gives my eyes a kick in the wrong direction. Forget what RX glasses can do. Heat takes visual acuity and throws it out the window.
2. Fatigue - yeah, lots of fatigue that goes right down to the bones. Sometimes nothing helps, not even Provigil.
3. Muscle Spasms - I am definitely more prone to muscles tightening up, especially in my neck and legs and feet. The neck could be due to the disc issues there and kind of a protective spasm ... but the heat bugs all those muscles.
4. Numbness and strange sensations - anywhere from head to toe these can hit me. From a numb lip to burning feet and anything in-between.
   

and by far my WORST and most embarrassing issue is what I deal with regarding bladder. I currently use an Oxytrol gel called "Gelnique". That the VA approved this medication for me has been a Godsend. I have failed so many other lines of medication and this one (albeit expensive) really helps with no side-effects. I've tried the pills, patches and I self-catheterize too (7 times a day) and still have bladder leakage. I am set to have Urodynamics testing in early August. I think that the last one was Summer of 2002. I would say 8 years is a long while, aye?

I can't believe it's been 8 years since my official diagnosis? I went to the VA Adaptive Sports office to talk to the two gals that run the program (all on a volunteer basis God Bless Michelle and Nell) and they encouraged me and all Veterans to have their service-connected ratings revisited on a regular basis. I have not had thing evaluated since 2004-2006 or so and there are a couple of things that have worsened. The main thing is to get a "permanent and total" designation so that I don't have to worry about any check-ups. There was one scheduled for 2015. Isn't that crazy? I know that the VA is backlogged, but I need to have some things documented that are not.

My vision in my right eye has taken some turn for the worse, but I'm doing what I can. No RX glasses seem to last me for long at all. I go to see the corneal doctor in September. Nothing I can do about that.

I am off of the Vivelle-Dot (estradiol. 05) because I started to have endometriosis pain (that lovely, all-to-specific pelvic pain). I am off the HRT until December and just dealing with the hot flashes (30-40 a day ... but am losing count). I walk around with an ice pack despite A/C running. The pool really comes in handy for that.

Going to do all I can to beat the heat.

No Pain, No Gain ... Learning to live with it

I've found one of my old Army buddies (my best Army buddy) FalCOner and she has recently reminded me of our Charlie 10 Basic Training moto: "No Pain, No Gain". After spending time in my anesthesiologists office today
and reviewing cervical spine and lumbar/sacral spine he told me that I have degenerative issues that cannot be fixed and that I need to learn to live with them.

I have a "military neck" or kyphosis in the cervical spine along with some bulging and dessication (the discs are losing water and drying). Military neck means that it does not have the normal "C" curve. Although the doctor states that my lower spine looks worse than my upper spine, I don't know which one to choose. They both hurt. Just part of living and taking a spill or two. My pain Doctor is from Hungary and quite stoic. He pulls no punches (which I actually appreciate). My neck and lumbar / sacral spine is what it is and it will always yield pain due to the condition of degeneration. Ok, so now what?

His best advice was to "not let the world know I am in pain". Think positive. If I look glum, people will ostracize me. While I definitely get what he is saying, sometimes it isn't as easy as it sounds. But it was a good pep talk and he is a good doctor specializing in pain medicine. He also told me to: "Take all the pain medications I need in order to exercise properly and get on with life". Ok, I like that. I can accept that. Can I do more damage? Probably ... if I do foolish things. But I will focus on riding my bicycle, some yoga, and swimming. These will be the best for me now.

I visited the VA Albany Adaptive Sports program and am joining that. I want to skydive with them, ski with them, play hockey with them ... whatever I can do. Many of the members have MS and they do a lot of things. I need to push myself the extra step and get moving to do that. No one is going to push myself but myself. I think an adaptive sports program would be great for me. In life we have many choices, I'm taking the road of knowledge, relief and better health to the best of my ability. Maybe time to look at the potential of a recumbent bicycle if that is better for my back situation??

I've been with the VA MOVE (weight management program) and have lost about 10 lbs. since joining and just making some different food changes and getting off some medications that were weight busters. Time to take life and "dance with it" ... an old phrase I used in another lifetime.

SI (sacral iliac) joint shot scheduled for July. I think that will bring some nice relief. Moving onward and will keep doing what I am doing and not get down, upset or too melancholy. My choice is to keep living, smiling and going to my happy places.

To Kim (if you read this) it's nice to see you back in my life after 25+ years. :)

and P.S. -- that is my neck MRI at the top. Isn't it lovely? Straight as a rod!

P.P.S - this is the normal curvature of the spine. Should be like a "C"

Living Life and Keeping the Faith

I can say that a lot has gone on since the last post ... and yes, it has. Finding meaning has always been a large part of who I am and contributing to society through personal God-given gifts has also been very important to me. I'm not out to change the world, but if I can make it a little better I feel good about that and feel as if I have done my part and made a difference.

If you've read my blog over the years, you know that I deal with a lot of pain, vertigo, fatigue, bladder control, and optic neuritis. That sums up my MS in a nutshell. There is always the sensory thing, but actually the pain and fatigue seem to take top shelf to bladder or anything else. When in pain and fatigued, the world just stops and moves a minute at a time. Minutes turn into hours, hours into days and sometimes it feels as if I am living wasted days. It's difficult NOT to feel that way as a disabled person with no more 9 to 5 traditional work day. As much as people would like to think that NOT working would be great, you quickly learn that work is a part of identity in our culture and it's one of the first questions people tend to ask about. I've quit fighting the work thing. I am happy and content to be retired now and deemed "unemployable", It took a long time to say that ... but it's true.

Pain has been the "elephant in the room" for me over the past year or more. I've tried everything from Lortab (Vicodin) to Hydromorphone and Methadone. All pretty heavy opiates. I was told by an MS'er overseas that Cannabis (pot, weed, marijuana, etc) worked wonders for her pain. After getting the "ok" from several of my doctors I decided to try it in vaporized form. It has worked wonders. So in true fashion, I am lobbying for it's legalization in New York State so that this medicine does not have to be so veiled in mystery and people using it for medicinal purposes do not have to feel like outlaws.

It's a learning process for me. Today I DID get the chance to lobby for it's legalization at the NY State Capitol. We (NYPatientsFirst) visited three GOP Senators offices today and spoke with staffers (the Senators were in session). I lent my voice as a woman with MS and hope that my story as a veteran and a woman with MS and other pain syndromes will strike a chord somewhere.

Pass the damn bill. That's about all I have to say about it at this point. I don't want to feel like a criminal for using medicine that is less harmful and non-addictive.

Spine issues - neuropathic pain - Updates

I am dealing with a load of neuropathic pain from my spine (top to bottom). I have a lot of radiculopathy most likely stemming from C-5 and C-6 in my neck. I also have some stenosis and disc bulging in my L5-S1 area (found on MRI). In light of all of my pain, I have requested to have my thoracic spine added to an MRI on May 20th because I am not sure if I am dealing with referred pain or I actually have a disc issue there between my shoulder blades as well.

I was scheduled for a lung CT scan this week and decided in collaboration with my doctor to hold off until December 2010. She recommends following the small nodule because of exposures and my weird autoimmune issues. We also talked about it and decided to bring neurology care inside the VA to a doctor who is familiar with MS and has a bit more experience than the one I am seeing now (who is wonderful, great bedside manner and accommodating but it using a "shotgun approach" in search for other diagnoses like Sarcoidosis). I saw my Primary Care doctor at the VA on Friday and she did a LOT of bloodwork on me.

I'll be meeting with a nutritionist and the VA MOVE program (equivalent to some kind of weight loss, weight-watchers group). My glucose was a little abnormally high along with cholesterol (but she thinks that was thyroid related). I have to be careful and take care of myself -- the catch22 is the chronic, intense pain. Once I can get a handle on that, I will feel pretty darn good.

I am set for a facet joint injection in my L5-S1 on May 3rd. I will see if that "takes". If it does not, the doc will give me a "epidural injection". Little by little. I want to get on my bike though and find ways to exercise. Soon.

On a side note. I will be doing everything to lobby and speak out for the legalization of medical marihuana (their spelling, not mine) in New York. It's senseless and crazy not to allow it. It really works. As someone who takes heavy, prescribed narcotic medication -- mj works better in vaporized form. Let medical patients like me have safe access to it without having to feel guilty. Compassion please.

At the beach - relaxing

Cecilia and I are in Florida and at the beach and enjoying our time. We slept a lot, relaxing and just trying to get the feel of things.

Apparently we have run into a bit of Spring Break so it's a little bit more to navigate and get around. The weather today was beautiful and sunny and we did some beach time. The water on the Gulf is so pretty. The water was a bit too cold for my taste to go swim and I wouldn't want to take a choice being a little unsteady on my feet.

Enjoying it and trying to make it a more restful time than we originally planned. Rest is the best.

Trying to get a feel for the area. Not a big fan of the Clearwater area but think that parts of Tampa would be a little nicer. We are going to head towards Ft. Myers in a couple of days to watch the Rays and the Sox. Looking forward to it!

Muscle Spasms from head to toe ... almost

I can't even begin to explain or try to quantify the amount of pain that my body is in right now. The pain management team have prescribed Methadone for me (the drug that Heroin addicts use to become un-addicted). I feel as if someone has broken my neck and I can't imagine the pain being much worse than it is. I also have hamstring spasms that are causing a tremendous amount of pain behind my knees (left worse than the right)

Methodone works in part ... but I am still in a good amount of pain while on it. The thing is, it is causing me to retain water and I have gained 10 lbs. in about 5 days. I have to call the Pain clinic back on Monday to report that AND thank God I am going to my neurologist on Monday. My body is one big spasm. I think Baclofen is the next medication for me. I am tied in tight knots and the pain is excruciating. Along with a left droopy eye lid and muscle spasms in my neck, shoulders and hamstrings ... I am feeling pretty crappy. The rest of me is feeling pretty good.

On the upside. I got half of my eyeglass order (sun glasses which will be great for Florida) and it is amazing to be able to see with such clarity. Amazing actually. I hope that these prescriptions last longer than most.

I am in a quandry as what to do about my medicine: continue taking methadone and dealing with the fluid retention or get off of it and try to go to the Lortab to see if that will give any relief? I have Robaxin for the muscles but it is only working very minimally. I may call the VA 800 line for a little advice.

Nah, I opted for taking my Methadone as prescribed 5 mgs. 3 times a day until I can get a hold of them. The pain is too searing not to take advantage of some relief

Moving on to the next thing ...

It is difficult to live life a day at a time in the unknown. It's impossible to predict mood, physical state and everything else. Sometimes I think that it's only me stuck in that place and then I realize it's everyone. We all have to live day by day and try to make sense of things - our physical world - especially if it seems physical maladies tend to happen one after the other.

My cough has quieted down as the doctor predicted and my chest is feeling pretty good at this point. I did all the necessary lab work but don't expect anything to come back too crazy. Why the elevated ACE test? Who knows? As my Dad would always say "Only the Shadow knows ...". I miss my Dad. It's been almost a year since he has been gone ... not quite a year, but almost.

My health is like a roller coaster and the roller coaster is mental as much as it is physical. The physical part is difficult enough but the mental part is just as difficult at times, if not more so. There is depression that comes with being in pain and feeling never, quite on top of your game. I deal with such chronic pain that I can't imagine a day without it. Really ... what's a day without pain?

Tomorrow I am headed back to the pain clinic and I feel defeated in a way. Almost as if I would like my body to be able to take care of itself and why can't it? I try meditation and stretching. I pray, I take prescribed opiates ... and still nothing works all the way. I guess I need to be content with having pain dealt with part way. That's what they taught me in the pain clinic -- partial pain relief. But even sleeping is difficult. How can sleep be difficult??

I was headed for a writing workshop today and I just couldn't do it. I feel raw and broken and it just didn't feel right for me. There was something that was off, so I turned my car around and came home and took a bike ride. I can ride a bike but I can't stand for long and sleeping on my back is difficult (even with a topper). I don't know what to do?

I have clicking in my SI joint and it's tremendously painful and unsettling. Somehow, I thought this pain was related to my Endometrial pain and it isn't. It's back in full force and I am unsure what to do. I am doing all the home remedies I can and want to see what the pain clinic will do for me.

The pain is getting a little rough for me. Sleep is evasive. I want to sleep.

Doesn't look like Sarcoid :)

I am definitely a happy camper today because the Sarcoid Pulmonary specialist is pretty certain that I don't have Sarcoidosis. I am extremely happy about that :-) He is going to do a pulmonary function on me in September when I go back to see him. He also took a bunch of blood and is repeating the ACE test, will look at Calcium and will look at Vitamin D (among other things). He reviewed my images and felt that the nodule on my lung was very, very minimal and that I should just leave it alone for about a year and then look at a CT scan again.

I like it, I'll take on.

Onward ho ...

Sarcoid Clinic Tomorrow

Tomorrow I head to the Sarcoid clinic and it seems like it could be a new chapter for me and my journey towards trying to understand all the strange things that happen to me. Autoimmune disorders are weird and they seem to run in groups.

Yesterday I was at a Corneal Specialist (Dr. Robinson) who diagnosed me as a Keratoconus "suspect" (highly probable). He did a special test that looked at the topography of the cornea and after 4 repeats on the right eye, it showed a pattern typical of Keratoconus where the cornea starts to bulge and get a dome shape. The doctor said that he will check it in 6 months. I was sent to the cornea doctor because my neuro-ophthalmologist has seen my eyeglass prescription change so often. I don't think she expected anything to really come up but it did. To my chagrin, one more thing ... but it does explain things about my vision. Watchful waiting. The doctor would not change my eyeglass RX because he believed they would probably be useless to me in 3-4 weeks. I don't have any glasses that get my right eye past 20/50 and it does get a bit frustrating. But really, it's the least of my issues. How much is a person supposed to go through?

Anyway, that all takes a second place to my chest and the cough that keeps persisting and persisting.

I'll know more tomorrow ....

Going to a Sarcoid Clinic at Albany Med.

I think that God is dropping things in my lap very providentially and that after a long time, I will be able to rule in or rule out Sarcoidosis (which is autoimmune in nature). After talking with the Pulmonology clinic at Albany Medical Center and requesting Dr. Napier for a sarc workup, I was told they have a sarcoid clinic run by a pulmonary doc (Dr. Beegle) and a cardiologist. I am sure that they will do the tests that need to be done to rule things in or out.

I feel like I am in good hands and will finally get to the bottom of things. That appointment is on March 4th in the a.m. It is going to be lengthy so that they can do what they need to. I am going to make sure to be as prepared as I can for it.

Knowledge is power.

Whooping Cough .... Anything is possible with me ....

I have been fighting what I thought was bronchitis since before the New Year and was just diagnosed with whooping cough. How strange is that!

I saw my fantastic asthma doctor today (he was the one who diagnosed it) and his name is Dr. Jocelyn Celestin. I have been seeing him since the mid to late 1990's and he's followed me through thick and thin. I have seen him outside and inside the VA hospital. he diagnosed me with whooping cough by the sound of the cough, the symptoms and the fact that my lungs and sinuses are clear. The cough threw me across the room once and I thought I busted a rib or was going to blow my brain out of my skull. Extremely painful. Luckily, the Lortab that I take on a regular basis as part of my pain regimen is a cough suppressant (yes, believe it or not--that is a great side effect). That has assisted me. The doctor also prescribed a couple other things to help me with my cope. He told me that the Chinese call whooping cough the "120 Day Cough". It should be done with by March before CC and I head to Tampa. The 2 Z-packs I took for my mysterious bronchial infections will work for whooping cough to make it less contagious. Won't do much for me but will help others.

The second issue was that Dr. Celestin is referring me to a special pulmonologist at Albany Medical Center - Dr. Mark Napier who knows sarcoid and specializes in certain types of biopsies and scanning. I am asking Dr. Pandey to make the referral and send notes as appropriate. Continuity of care is one of the biggest challenges when using two different institutions (the VA Medical Center & Albany Medical Center). It's up to me to try to make sure the left hand is talking to the right.

Anyway, I will try to limit my exposure to people until I am pretty confident things are not contagious.

Still chasing the Sarcoid train ...

My neurologist is still believing I should continue down the Sarcoidosis path given the recent lung lesion, bronchial infections, eye stuff (is it uveitis or optic neuritis) and joint pain and neuro symptoms which can totally go along with sarcoid.

My next step is a pulmonologist and a GAD-enhanced PET scan to look for granulomas and or a biopsy. It's the next step to look at and potentially rule-in or rule-out Sarcoidosis. If that all comes back negative, I am being sent to a rheumatologist (it's been since 1990 since I saw one).

SI joint is really bothering me and my eye is busted .... but I'm alright (LOL)

On the agenda: make appointment with my neuro-ophthalmologist and get into a pulmonologist. The neuro told me she couldn't put me on steroids for my eye because of my recent pulmonary infections and the risk of getting a bigger infection. Can't do it, so I will deal with it. Doing a lot of chasing different diagnoses. Dr. Pandey has been wonderful and patient but persistent in getting to the bottom of things.

Next steps and a lot of prayers ....

Traveling with a walker - my new companion

This is the first trip ever that I have traveled as a disabled person. I have usually been able to keep things under wraps and mobility has been manageable with rest and pain medication. I am reaching the point where my mobility is really being affected because of pain, clicking and stiffness in my sacroiliac joint. It has been affecting both sides lately but is more prominent on my right with my reconstructed knee. Also, I am having constant muscle twitching in my legs (various muscles on both legs) that is quite bothersome and actually keeps me awake. I am dealing with very specific pain in my neck, thumb, shoulders, feet and pinky. The most disabling is my SI joint pain. It isn't a classic lower back pain (the kind you can spasm and get from overwork or whatever) this is distinctive and the only real way to get around was using my "Jimmy Walker". For once I had to use handicapped facilities in restrooms and get the feel of what having an extra "thing" (whether wheelchair or walker) felt like. People and most places were very accomodating with handicapped ramps, handicapped bathroom stalls big enough to fit a walker into and cabbies willing to stowe the walker in their trunks without much grumbling. The airports were very accomodating and stowed my walker at the gate and had it waiting for me as soon as I deplaned. We had very tight airport connections going from Albany -- Clevaland -- Las Vegas and amazingly, we were able to get to our proper connecting flights in Cleveland with the help of those speedy motorized carts. We came awful close to missing a flight home but the cart guy got us to our gate in time.

I learned a lot about disabled traveling this time--a lot. I learned that there is nothing to be ashamed of in using a walker. It's a tool much like my intermittent catheters are. Just one of those things that makes life a lot more normal for me. I am not ashamed ... I am proud that I have the guts to get out there and just do what has to be done ... and that is comprised of enjoying life and being thankful.

I feel though that I have to get this SI joint thingee checked out by my MS doctor who might recommend a rheumatologist for a check up. I used to see one a long time ago while stationed in Philadelphia as a Franciscan. I just want to make sure that I am not on a more progressive MS path and if I am, what are the best choices for me at this point?

One thing is for sure, I want to really try to start exercising and loosening up and using my inversion table to stretch out my spine (which feels SOOOOOO good). Once the weather gets better, I will get back on my bicycle and make a better commitment to it. Yee-haw.

My lungs are on hold until April when we look at another CT scan and my MS neuro appointment is in the beginning of February. I have some talking to do with Dr. Pandey to see what I can do to keep things as stable as possible.

Roger that!

Time for some R & R

One would believe that being "retired" means every day is filled with "R & R". Believe it or not though it's easy to get stuck in your head and entrenched in chronic pain and chronic illnesses--this is anything but relaxing! I am taking a vacation from all of that and headed to Las Vegas for a short respite to forget about the world around me for a little bit. I am going to forget about doctor's appointments, CT scans, MRI scans, MS, surgeries, and hopefully control the amount of chronic pain that I am dealing with. This is the first trip that I have ever traveled with "Jimmy" -- "Jimmy" is my walker (named affectionately after the "Good Times" actor by Celia). Bringing humor and creativity to the tools in life is what makes things bearable. That's one of the wonderful things CC does for me and I am blessed.

If you've been following the lung nodule, that will be checked in April (in about 4 months). I am ok with that and will put that on the back burner. I am losing a little bit of mobility of late and my right leg is in a twitching contest. It's been twitching hard and soft for about 14 days now and it's kept me awake at times. My lower back and hips are so painful that it has become increasingly difficult to get up and going in the mornings and keep going throughout the day. The walker is one of the tools I need at this point to really make it from point "A" to point "B" that covers any amount of distance. It doesn't bother me ... it really helps actually.

This is one of the first vacations is a long, long time that I can really remember looking forward to and being excited about. My endometrial pain (all-consuming) is behind me now and I just have MS pain to deal with now.

I see my neurologist Dr. Krupa Pandey (props to Dr. Pandey) in early February and will definitely discuss my legs and the infamous twitching. Bothersome. Can't say much for my eyesight at this point either and know I need to get back to Dr. Lopasic for a visual fields. Things are much dimmer in my right eye and hard to hone in on. All part of the disease.

Anyway, the disease stays at home and I am going out of my body and brain to relax and have a good time.

See you on Facebook! :)

Watchful waiting ...

I spoke with my primary care doctor who is sending my CT scan results to my neurologist Dr. Krupa Pandey to evaluate. I need to get the actual images from the Albany VA if I want to carry them.

Right now, the plan is to re-scan the lungs in 4 months and "follow the nodule". If it does not change, we will be in good shape. If it does, then next steps will follow.

I feel good about all this. In the meantime, I am going to the doc tomorrow to see if there is something that can be done about my chest cold situation. I want to be in good shape for Las Vegas.

So, in April another scan. Until then, I am just going to keep it on the back burner and not worry about it. God has a handle on it.

The Unknown .....

Curve balls are what life is all about. Enjoying each day is a MUST and MS or any other ailment or pain really does not have to rob us of our sanity, our happiness, our meaning and our fun. I feel like the past couple of years have been filled with nothing but curve balls as they relate to health issues. I'm dealing with them the way I dealt with my Drill Sgt. back in Basic Training -- let 'em roll off my back and get back up to go through the next day.

I had a CT scan of my lungs this past Friday on the 18th of December. I received a call yesterday from a doctor at the VA (my Primary Care doc is out) and he mentioned that they found a 1 cm spot on the upper lobe of my left lung. I got to see the CT scan when they did it and the only thing that showed were some small lymph nodes (about 5-6 of them). They did not use any contrast because the X-ray tech told me that is not the way they normally do lung CT's. Whatever ....

Ok, so now I am stuck in an unknown before the holidays.

The pros:

• - it's a small spot (lesion) - 1 cm
• - it's solitary
• - could be scar tissue???

The cons:

• - could be sarcoid??
• - could be cancerous??
• - need to get the work-up and wait for those results
• - it's the holiday season
• - I feel like I have a chest cold

I have to tell my Mom and family ... but it is an odd time. It's at a time when we are mourning the loss of my Dad (CP1BH/W3) who passed away in May 09. It's our first Christmas without him. Tough times.

CC's is understandably a little bit scared and I guess I am not a big fan of the unknown. This is where faith comes in in a BIG way and you just look for a miracle. I believe in miracles and a day after that phone call we are making game plans on how we will treat any outcome as a couple. We have a plan and will follow it.

Miracles happen every day ... looking for one now. I want to enjoy the holidays and look forward to a great time in Las Vegas. A vacation ... something I haven't done in quite a while.

On the advice of the doctor who called me, I will be talking to my Primary Care doc and see what the next step is. My question too: why the elevated ACE and my elevated liver enzymes? I have to get that bloodwork back on track and just live life normally. Let things get back on track ... or guide me in the way to handle them.

I won't be beaten ... nope. Today I got my left-hand nails put back on (took them off before surgery) and am going to get back to my Flamenco guitar playing and lessons in a big way. Music speaks to the soul, warms it and heals it. I have the prayer train going and am on it myself. I offer up the uncertainty and the unknown. I'll take things step-by-step and deal with them one moment at a time knowing that all will work out the way it is divinely planned.

I am at peace ...

Working through the kinks ...

My Oopherectomy and Appendectomy went well and I was healing really well ... but I noticed that part of the incision didn't look right and was hot to the touch, swollen and red. A couple signs that can signal a local infection.

Yesterday Cecilia and I spent most of the day hustling between the Albany VA Medical Center and Albany Medical Center to get my surgical wound tended to. What I needed: drainage and antibiotics. We had to go through the VA Emergency Room in order to be seen quickly. We were then shuffled to AMC where the chief surgeon and one of the residents did an "I&D" (incision and drainage). Without any local anesthetic, they cut the wound open, swabbed the infection and cleaned it out. I wouldn't have minded a little lidocaine (but that hurts too). Right now I am on Keflex to try to heal the infection and it is dressed and ready for a party.

I go back to the doctor's office on Monday so they can check out the wound and see how it is healing.

Thanksgiving was nice with my family -- I wasn't the most comfortable with that "boo-boo" but we made it. I can't believe that Dad wasn't there this time around. There was a void. He wouldn't have enjoyed our Thanksgiving this year as much since we decided to do it away from home and he always liked events in the house and being catered to. He was always a "Lord of the Manor" and thought that family functions were best done in the house. I liked being away and leaving the work to someone else ... that was very nice and the event was nice. It was really nice to be with family.

So begin the holidays ... the first without our Dad. It will be strange but I have a feeling we will all make it through.

The circle of life and the natural path of gains and losses. I feel we all win if we share and express our love, kindness and compassion. Now is the time to share that more than ever.

Feeling Good, Recovering Well

It seems that a lot of prayers have paid off and that I am moving through this chapter in my life in a positive way and each day is a little better than the last. Some of the pains that I have lived with for so long (pelvic pain) are gone and I happily bid them farewell. My abdominal core is very, very weak and within a month or so, I have the doctor's permission to try to start strengthening that. I look forward to that and getting back to martial arts.

I have been able to get out on short, short walking jaunts without my walker but having it handy makes for less painful walks that require more endurance. I have it as a "tool" when I need it. A shopping cart to lean on does the trick too :) I guess a couple more reasons for shop therapy every now and then.

I am beginning to feel a bit more emotionally stable (thank you hormones and Lexapro) and have not had a hot flash once! Things seem to be working for me and I feel a greater desire to socialize and enjoy the holidays more. This is something I have not felt in many years ... in fact I really cannot remember when the last time was??? Chronic pain can take a lot out of a person. I still have chronic pain, but the scale is entirely different and the pain is much more isolated and not pelvic in origin. Hooray for that!!!

The next chapter in the journey involves a CT scan of my lungs with contrast to GOD WILLING rule out Sarcoidosis. The ACE (Angiotensin-converting enzyme) blood test was positive and elevated and ACE is a test of inflammation that measures the "junk" that granulomas release. From the way I understand it, granulomas are like clumps of cells that can form on any organ. They have a special predilection for the lungs and heart it seems. There is also something called "Neurosarcoidosis" ... this can mimic MS A LOT. I have a lot to learn but the first part of the journey is getting that scan done and working along with my great neurologist Dr. Krupa Pandey at Albany Medical Center. She is trying to rule out "Hilar Adenopathy" (so the script says) which is enlargement of the lymph glands at the root of the lung. This seems to be specific to sarcoid I guess.

I like the Cleveland Clinic for their information and wanted to pass on a link:

Sarcoidois - The Cleveland Clinic

I feel really good and am just going to take things a day at a time. Life is good and I am always ready for whatever it throws my way. Personally though, I want to stay away from the operating table for a LONG LONG (like forever) time. I've given up every spare part I have. Everything else I need. I hope God is listening to that.

Anyway, no VA surgeries in January (as they have been for the past 3 years), instead ... VIVA LAS VEGAS BABY!!!! Really, I am so looking forward to getting back to some semblance of a regular life where I can enjoy socializing, doing martial arts, playing Flamenco or other guitar ventures and doing exercise. Being retired does not have to mean being boring. I intend to do everything I can to preserve a good quality of life. No amount of money, wealth or material possessions can buy that good quality of living. I enjoy what money can buy ... but without quality of life it is all just very, very lackluster.

Thanks for the prayers all ... they continue to work and strengthen me.

I am learning a lot about this auto-immune condition and how they are connected or if there is some causal relationship to my time at Ft. McClellan and my numerous auto-immune conditions. Just odd, very very odd!

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.