What I See

I've struggled for almost 6 years trying to explain to doctors, family and friends that whatever caused my dizziness, tinnitus, muscle spasms, intolerance to cold and other miscellaneous symptoms also did damage to my vision.

The doctors tell me they can see a nystagmus, that is a problem with the right eye not tracking with the left eye. But they assure me that it's slight and they can only tell when I'm looking up to the right. Dr. Hain has done tests that show how my right eye "dances back and forth" when my head moves too suddenly. I knew that from the beginning and therefore work hard at no sudden movements.

But they don't seem to understand exactly what it is that I am seeing. Especially when I say that the vision in my right eye alone is doubled and can be made worse with movement. Apparently my eyes look like they are working fine when I'm reading for them or looking at those letters on the wall.  And they also tell me that my optical nerves look good and although I have "Acute Disseminated Encephalomyelitis" -- severe brain damage in many parts of my brain -- none of it appears to be in areas that would affect my eyesight. Or almost any of my other symptoms for that matter. And that brain damage doesn't look like MS -- or anything else for that matter.

BUT MY VISION IS NOT FINE!

So I've put together a short video to illustrate how I see things. Here it is. Let me know if you understand. Thanks. Maybe some doctor will understand too and have an idea how it can be fixed.

My Life is Perfect!

I heard or read the other day that nobody's life could be as perfect as their Facebook posts make it appear to be. I immediately thought -- "Mine IS!"

Just then I turned and looked over at my walker.

Well, maybe my life isn't perfect after all. But in so many ways and at so many times it really does seem to be - at least to me.

Yes, I have an unnamed illness that seems quite a lot like MS but many neurologists insist that it isn't MS. Except for some neurologists who think that it might be some type of MS. But whatever it is, there doesn't seem to be any treatment any of them are willing to try that may work. Yeah, I guess that's not exactly perfect.

And this unknown illness makes me dizzy all of the time so I don't dare drive and requires me to use this walker. It doubles my vision so I have to concentrate extra hard just to read anything. And it makes parts of my body spasm up then hurt like crazy, while other parts of my body can never get warmed up. OK, that's kind of crummy.

But instead of worrying about all of that, I choose to think about all of the wonderful and perfect things in my life.

Joe has to be one of the best husbands in the world. He's handsome, funny, caring and loving. He worked so hard to provide a wonderful life for Phil and I. And now that he's retired he's become cook, housekeeper, chauffeur, caregiver and more because I can't do those things anymore. He'll do anything for his family. And he'll go a long way to help out his friends.

My son, Phil, has grown to be an incredible man. I am so proud to see him with his wife and son. He's learned a lot from his Dad. He works hard at his job, but his family is the most important thing in his life.

I have good friends even if I do now have to use Facebook to connect with many of them. And I've gotten to meet more new friends through my MS Aqua that Joe takes me to three days a week.

Speaking of MS Aqua and Yoga, it's been so wonderful to have found a way to move and exercise this body. I've built up more strength rather than just losing it.

I've found or gotten back to some great hobbies. My family tree is growing huge and I love finding out more and more about my past relations. Our photos are getting preserved electronically (well, I have to get back to that a little more). Crocheting actually helps to warm up my hands besides allowing me to make the cutest things for our grandson, Max.

And then there is Max. Just looking at him or photos of him make be feel so good. Hugging and playing with him is more wonderful than I even imagined.

Those perfect things are what I choose to think about all day. So yes, I have the perfect life. The rest is just static that I can usually keep in the background.

Doc-ologist Revisited

In 2012 I wrote a post about a new specialty of mine - being a docologist. That is someone who specializes in seeing doctors. But after making an appointment for yet another new specialist I realized how my specialty has grown, and grown.

Most of my I saw only my PCP. I even tried to always find one that also handled my yearly gynecological exams.

When my symptoms started in 2009 I added a few new specialists. But as the search to find out exactly what Smolinski Syndome really is the number and kinds of ologists have increased almost humorously.

The list just since 2009:

PCP - 2
Neurologist - 5
Nephrologist
Otolaryngologist - 2
Endocrinologist
Surgeon
Cardiologist
Pulmonologist
Psychologist - 2
Ophthalmologist - 5
Rheumatologist
Neuro-Otologist - 2
Audiologist
Gastroenterologist
Anesthesiologist - 4

and the new doctor is a Neuro-Opthalmologist.

Of course there are also the ologists I haven't actually seen but have worked behind the scenes-

Radiologists
Pathologists
even Neuro-Radiologists

I know that I am so lucky to have had the opportunities to have been able to be seen by many of these specialists. Because of good insurance but especially because Joe has been able and enthusiastic about taking me since I cannot drive. 

I'm also lucky in that I still find this journey interesting. Yes, I wish one of these would have the key to fixing my problems. But I've enjoyed listening and talking to these specialists. Even if I end up walking out of their office without a solution. 

I guess it's just one more addition to my resume of being a doc-ologist!

MS or not - part 2 - NOT a new hope

It's now been 4 months since one of the Rush Hospital's MS specialists declared "You may not have MS". And I still find it hard to understand why not.

Like after my visit to the regular neurology department at Rush yesterday

Dr - The damages in your brain could be from other causes than MS. Possibly even your diabetes.

ME - I can understand the diabetes causing my neuropathy. But what about the vestibular (hearing and balance) loss? Or the muscle spasms?

Dr - Those wouldn't be caused by diabetes. Those are still puzzling.

ME - But MS would explain them.

Dr - Yes, but  it may not be MS. So we're just going to treat the symptoms.

I left with an order for Vestibular Physical Therapy, a plan to see if I can sleep for more than 2 hours at a time and wondering why I want a label for my disease.

Today I know why.

At least with MS, while there was no cure but there is at least plenty of research going on. There are new drugs and new clinical trials. Without a diagnosis of MS I wouldn't be eligible.

Even when discussing why I was taken off of the MS drug I had been on, Rebif, I was told that the side effects outweighed the suspected benefit. I didn't ask at the time, but would the same be said for trying other, newer drugs that work differently? Would my insurance even pay for it since I was no longer confirmed to have MS?

Another reason I want that MS label - I now feel like an MS imposter. Should I stop going to my MS Aquatics and Yoga classes? I won't stop because I know they are helping me so much. But still I have thought about it.

Should I stop reading and responding to MS forums and pages? I get so much new information and I identify so well with everyone in them. I understand what they are going through. I'm going through it too.

Only now, apparently what I'm going through is not MS. Just an unknown condition that is affecting parts of my body without displaying signs in the appropriate parts of my brain.

When I left the doctor yesterday, it felt like I had left all avenues of hope back in his office.

MS or not MS?

I went to a new neurologist at Rush Multiple Sclerosis Clinic a couple of weeks ago. I went for a few reasons -- my current neurologist seemed satisfied that I wasn't having actual relapses (the sudden loss of a function) and felt that the progression of my symptoms was just to be expected. He felt that my progression was actually slower than most and that was also a good thing.

Rush has a well respected MS program and although it was in Chicago I felt it was too far away to ask my friends to drive me to appointments. Now that Joe is retired he was more than willing to take me.

And I was hoping to find a trial treatment that had a potential to at least retard further or faster progression.

Currently the only approved treatments for MS are targeting Relapsing Remitting MS. That's where an MS patient will be suddenly hit with a new symptom. Which many times will go into partial or full remission. I don't have that. I have progressive MS. My symptoms remain approximately the same - constant dizziness, severe muscle cramping and "tics" in my legs and hands, tinnitus, and problems with double vision and focusing. In the four years since this started the muscle problems have increased from just my right leg to now include both of my hands and sometimes my left leg. My dizziness has not gotten better but my eyes have gotten worse.

So I had an appointment with a neurologist at the Rush MS Clinic. It was a long appointment. He listened carefully to my history and symptoms. He performed and at times re-performed a series of tests on my hearing, strength, balance and double vision. He checked my latest brain MRI.

And at the end he said that he questions whether I have MS or not. And he patiently explained why.

My mind went reeling. I went back to the terrible feeling before my MS diagnosis when I KNEW something was very wrong but the doctors I saw couldn't tell me what. For me this was NOT good to here.

Joe and I talked about it later. He was taking the news as a good thing. MS was a sentence of life imprisonment in a non-responsive body. Couldn't this mean that there might be something that could fix all of this?

I felt I was back in limbo. MS was a monster. But at least it was a monster I knew and was trying to prepare to live with. This monster could be anything. To me the chance that this monster could be defeated was very remote. This may be a monster without a name. And yes, I am very afraid that this may be a worse monter than my MS monster.

So far I've only mentioned this to friends in my MS internet group. I feel strainge explaining to friends and relative that I may not have MS. But then again, I may. I just don't want to go into the whole discusson until I know more.

The new neurologist is taking a cervical spine MRI and has asked for some of my old MRI's and test results. We see him again at the end of this month. I guess all I can do is wait and see.

Fix it or Forget It

I have the progressive form of MS. That means I just keep rolling down the hill as far as my symptoms go. But I still often wonder... can I fix it? Or should I just realize that what's gone is gone, forget trying to fix it, and just concentrate on living with what I have left?

Take my legs for example. They have been feeling weaker and much more clumsy in the past several months. My doctors, Joe and I were hoping that the weight loss from the lap band surgery and diet would alleviate some of the problems. But it didn't. 

Quite a bit of the time I feel like my legs are getting weaker than ever. My spasms are definitely getting worse. So does that mean the MS is doing a pretty good job of robbing me of my legs? Or do I need to work more on strength exercises for my legs?

Any exercising makes me tired, sore, and even weaker right afterward. But I would put more effort into it if I knew it would make a positive difference. I just wish there was someway to know right now whether I can fix it or just forget it.

Oh the Things I No Longer Need

The other day Joe ruined my nice 9 X 13" cake pan. He certainly didn't mean to and tried his best to get it clean. But it was done.

My reaction? A sigh and "Do you want to pick up a new one or do you just want me to order one?"

His answer took me by surprise, but I guess it shouldn't have.

So much of what I just wrote shows one of the ways I often can't seem to realize how MS has changed my -- well really OUR -- lives.

Joe used to cook. When we were first married I worked downtown but Joe worked in the suburbs much closer to home. Joe would get home first and make dinner. Then I'd cook on the weekends. Then Joe also got a job downtown, we had Phil, etc., etc. and I did all of the cooking. But now I can't use two hands to do anything so my cooking has really been thrown out the window. And Joe has wonderfully taken over.

Then I said that he was using MY pan. Although I may not cook or drive, I still seem to lay claim to all of the things I used. It's MY car. Everything in the kitchen is MINE.  Even though Joe drives the car all of the time and I've already explained about the cooking.

And finally, asking Joe to pick one up? Me offering to order one? Since I don't drive, Joe does all of the usual shopping. And Amazon Prime delivers almost everything else. No more browsing through stores for me. Comparison shopping means reading the online reviews.

So what was Joe's reply? "What did you use it for and will I really use it myself?" When I said "cakes and lasagna". He said nope, don't plan on making them. End of conversation.

But for me it was actually one more small loss. I look at ads for things I had always wanted but never had like a KitchenAid Mixer. But now I think how nice that WOULD have been.

It probably sounds stupid or weird. But it's just one of those little things that make me just sigh.

New Year - New ME??

We're over a week into 2013. Just like a lot of other MS patients' blogs that I read the change of the year seems to provide a good time to assess my MS.

I have progressive MS. That means that my abilities will continue to decrease without improvement. So as far as the MS is concerned I can't really have any goals. Just hopes and prayers that the progression is slow.

But there has definitely been progression. I feel like there was more in 2012 than in the past. And maybe I should have been writing this same blog for past years like other bloggers to give ME something to look back upon and compare.

I feel generally weaker now. Standing, walking with my walker, even lifting with my arms seem to tire me out much more quickly. And now, instead of just wanting to rest, I feel like my knees and elbows are about to give out. When I first start walking I can move pretty fast and decently. But in a shorter time my feet seem to drag.

I've had neuropathy in my feet and hands before. But now the numbness or tingling comes on much sooner. And it is much more widespread. Now instead of just my foot going to sleep, it sometimes feels like half my leg has joined the nap.

And now my hands have started shaking.Most often my right hand but my left hand is not always much better. Just yesterday Joe and I spent about an hour at our attorney signing updated documents. I was pleasantly surprised that my right hand lasted throughout the session with only the last few signatures looking a bit more cramped (as least to me). But then we went to renew my Drivers License. Signing that was back to feeling like a 4 year old learning how to write by having a death grip on the pen. And my signature showed the difference.

Then of course there is my vision. It is becoming harder and harder to get and stay focused. I'm not sure if it's detectible from watching my eyes but I'm well aware that my eyes want to drift separately of each other. Watching action movies is still fun, but now I simply let my eyes relax and see only blurs during the action scenes. Trying to focus on the action gives me a quick headache.

Finally, my mental cognition is definitely slipping more. I find I'm failing to produce more and more words. And I will say the wrong word without even realizing it.

All of this is not saying that I'm not just taking all of the setbacks in stride. I did make a HUGE step in December 2012. I had lap-band surgery. I knew that I MUST ease the burden on my body. I'm already amazed at how much weight I've lost and plan on following strictly to the incredibly tight diet plan to continue this progress.

Along with that I will be doing more exercising. Since walking with my walker uses up so much energy in the legs, back and arms, I've started using a recumbent cycle. For strength I'll be using pull cords.

Preparing for the surgery gave me a good look into how my muscle spasms have progressed. The surgeon wanted me to discontinue both the pain med (Tramadol) and muscle relaxer (Baclofen) I take for my MS. Going down to a half dose of each for only one evening woke me up only two hours later in severe pain with all of my arms and legs jerking.

So I am now well aware of how I rely on the Baclofen. My dose was increased this year and of course I wonder if that my be contributing to the weakness I feel. But at least it's without the screamingly tight muscle spasms.

But other than the physical problems I have been experiencing, I have been feeling very good. I've felt happier and calmer than any time in the past three years that I've known I had this disease. Even during the holiday season that has  always seemed to put me in a tizzy,  I was happy and relaxed throughout. I'm sure a big part is knowing that Joe will be retiring soon. But this year I didn't seem to regret what I could no longer do. I guess I finally accepted it.

Doc-ologist

ol·o·gy

noun, plural ol·o·gies. Informal or Facetious .

any science or branch of knowledge.

-ist

a suffix of nouns, often corresponding to verbs ending in -ize  or nouns ending in -ism,  that denote a person who practices or is concerned with something, or holds certain principles, doctrines, etc.: 

This year especially I seem to be working hard on a new specialty in my life. It's not really something I planned but is something I've put a lot of hours into.

Like most people I have a PCP. That is a Primary Care Physician. Since I seem to be suffering from many conditions I see my PCP at least twice a year. But this year because of some additional testing she's added a few additional visits to our schedules.

Due to my Multiple Sclerosis my Neurologist has been a big part of my life for several years now and he usually likes to see me twice a year as well.

But in addition to my usual doctors this year I have been required to visit more specialists.

At least one of those tests that my PCP decided to run led me to see a Nephrologist. That is a Kidney Specialist. Apparently I had some kidney disease. It's just something to monitor for now. But I now get to see this doctor every four months.

This year I decided to have lap-band surgery. I went to see the surgeon. I guess surgery is too wide of a field for him to be an -ologist. Either that or he's not an expert in his field. I hope it's the former. Anyway, before the surgery can happen I needed to get approvals from other doctors.

I saw a Pulmonologist and passed a breathing test. He also had me go through a sleep test. I ended up with no apneas. 

Then I saw a Psychologist and took several tests to check whether I was mentally ready to handle the changes and routines that would come after the surgery. His definitely approved me for surgery. 


Next in line was a visit to a Cardiologist. For him I passed both the EKG and the stress test.

And along with those visits, my PCP sent me to an Otolaryngologist, otherwise known as an ENT (Ear, Nose and Throat) because I apparently have an enlarged thyroid. Results so far show that yes, it's enlarged but not enough to require surgery. But he's also checking out my parathyroids, which I didn't know existed.

Finally, well at least finally for now, my PCP is sending me to an Endocrinologist. Apparently some of my other blood work showed some strange numbers. I really have no idea what news that visit will bring.

After seeing all of these experts I feel that I too have gained some new expertise. I truly feel I now qualify as a DOCologist!

 

An Idea for a Great New Business

The day before yesterday I had idea for a great new business focus. It would have been a great fit for Smolinski Consulting (my independent computer consulting in my former life). Yesterday I was getting more excited about the idea and started formulating a business plan.

I know what it will take, who the target customers would be, the types of roles that the business would require and even some people that would fit well into those roles. I'm not quite sure if the idea would take off, but I even know a potential customer I could approach to get more information and offer a deal to work with that company to make sure my idea was right on and would fly. I'm even sure that customer would be able to recommend my new venture to other potential customers.

It is exciting thinking about how this could be helpful to new customers and could grow. And I know I don't have the whole plan ready yet but it would be fun to put it all together.

Of course there is one problem...

My MS ---  @#*@&#!

Yes, I know that I retired Smolinski Consulting 5 years ago although it's hard to believe it's been that long. But since then my new companion, MS, has introduced itself to me and insists on being with me constantly.

With my MS, I was realizing that even though I found the idea exciting and compelling I was still spacing out in the middle of writing things down. Heck, I even space out in the middle writing anything, even emails.

And then there is the fatigue. I truly believe that the more concentration I need to use for something - anything and everything - directly relates to the speed and intensity of the fatigue that MS sends my way. I'm at the point while typing this that when I closed my eyes to think of a word my eyes just wanted to stay closed for a bit longer.

So even though I practically know it would be a successful venture, it will only gather the digital equivalent of dust while the plan sits on my hard drive. But I'm still not going to say what it's about. It would be nice if I could convince someone else to pursue it.

My Asterisk

Especially in sports certain significant events are listed with an asterisk. The explanation is always at the bottom of the page but most of the sports talk I hear simply now says "and that was with an asterisk".

Having an asterisk usually denotes something questionable. Suspected steroids in a lot of sports. Even my favorite swimming now seems to have asterisks for records set in 2008 - the year of THE suit. (See the suits worn at the 2008 Olympics compared to 2012)

So I guess I could say that MS is my asterisk. Being able to simply show an asterisk, even if it were like cartoons where it would appear in a bubble over my head, would help.

"How are you feeling? " most of the time gets a response of "Okay" from me now.

But it should be "Okay*" I don't want to go into detail about what's hurting more or working less today. But no, I'm not good.

And if I say that it's a bad day of course I'm asked why. How do I explain that my muscles seem to be cramping all over my body and that it had been going on all night? Or that my hands are starting to shake almost every day? Do I tell them that I've been so depressed all day because my feeling bad has me really worrying about my definitely uncertain future?

I know how they feel if I say such things. Everyone is concerned and wants to help. Beloved family and friends want to whisk away my pain and depression. I know telling them how I feel just makes them feel badly themselves.

Others like to tell me about people they know or have heard of with MS who have bad spells but usually they manage pretty well. Since it took me a while to learn about the different types of MS i know that trying to explain to them that my problems won't really be going away is almost futile.

So instead I just say "Okay". I just wish they could see the asterisk and there would be a comment below that explains what it means.

What's Next?

I know and have been eternally grateful that I have a very optimistic attitude. When pain and tragedy has come my way I can usually mourn, deal with it and move forward fairly easily. And equally amazing to me is that most of those pains have turned around and produced incredible joys.

Two that I think about constantly - my mother disowned me mostly because I married a man of Polish descent and our son was born with a hidden but what turned out to be a life threatening condition.

For the first, I was forced to give up ties to me entire existing family

For the second, I will always remember two specific days after our son was born. The evening we were called by his pediatrician telling us we needed to get to the hospital immediately to have our 2 month old admitted I thought could be no worse.  But the day eight months later where we waited in a surgical waiting room for 2 hours past the original surgery time indicated and then brought back to see my baby with 4 and soon to be 5 tubes attached to various parts of him is even more vivid in my memory.

BUT

As soon as I think of these things I actually smile. The memories of the pains are so quickly swept aside by the warm memories and love from a husband of almost 40 years or marriage and the very healthy lifetime of our over 30 year old son.

Even very soon after the horrible shock and sorrow when those actually occurred I switched to believing and knowing that things were going to be fine. "What next?" was always an optimistic look to a future of putting the darkness behind and enjoying a warm glow of the future yet to come.

BUT

Not now.

Now I have to tap into my optimistic side to get me through the next day, sometimes the next hour. My MS has finally made the question of "What Next?" something scary.

I have progressive MS. That means that unlike 85% of the others with this disease my symptoms will most probably not go away. Instead they will get worse.

I have seen it already. Things I thought I had worked through and gotten used to are actually worse than ever. I fight to keep my eyes focused while I read or type. The pain that would wake me up in a scream at night is not being helped by the current medication doses.

And now there are other things. My right leg tingles almost all of the time. And now my left leg is "going to sleep" just as easily. And now my hands have begun shaking. My right more than my left. But I didn't have that symptom even 6 months ago.

"What next?" is no longer the optimistic "OK, that's over. Now what's next?!!!"

If is now the "Oh, no. NOW what NEXT?????"

Celebrating is not only OK, it's Required!

Once my mom told me "Don't be too happy about good things. That will only give you further to fall when something bad happens."

OK, it was not exactly a good environment in which to grow up. But I'll cover that in a different blog.

But after reading Nicole Lemelle's blog today (http://www.mynewnormals.com/should-be-enough/) it reminded me of my mother's philosophy. And I thank God that I didn't share her belief then or especially now.

I have generally taken the opposite approach - Celebrate even the small stuff because it will help get you through the hard stuff.

That has never served me better than now with my MS. I can have some really bad times. Days even. When I know I'm getting worse from both my further lack of abilities to the increasing pain. And yes, that does depress me.

But to get out of it I try to find something to smile and be happy about. I told you about them in my blog I titled My Blessings (http://mesmolinski.blogspot.com/2011/08/my-blessings.html ). I guess this blog is just another reminder of the good things I have.

But I think finding something - anything - to think and smile about is so important to everyone. I'd love to have one of those little poppers to shoot off when I needed to. But when I think of all of the mess it would make I'll just have to keep a mental video of one in my head.

I Don't Know All About Your Problems - But if You'd Like a Contest I Bet I Win

I was at a weight loss meeting at the hospital today. We were told to arrive a half hour early for weigh-ins. Since this was everyone's first meeting there were a few nervous smiles and not much talk.

Then a man walks in 5 minutes before the program is to start. He huffs his way to a chair without signing or weighing in. Then huffs again after he learns that he has to get up to do those things. He makes sure that everyone in the room knows how hard this whole procedure is for him to go through. And not because he was overweight. HE had to come straight from work and HE didn't realize how long the paperwork was until just before he left work, etc.etc.

During the Q & A session he was told that he should wait to ask his personal questions until it was over to which his response was -- yep -- another HuFF!!

We all know the type. The person who believes that the world should revolve around them. They they're problems are the worst and therefore demand instant responses.

When he was complaining about having to race from work I so wanted to tell him that I would have loved to have been working or even driving. When having to get up from his chair TWICE seemed to be such a nuisance I wished he had been there early enough to watch me maneuver through doing and holding everything while using my walker.

Sometimes I just want to scream "Let's compare problems OK?" I'm sure it wouldn't take too long for mine to trump his.

But I don't. Instead I make sure to shake my head in disgust when he looks my way. But I also make sure to smile and greatly thank some of the others who opened a door for me, or made room for me to walk with my walker.

In one way he's right - I certainly don't want to have HIS troubles. I've got plenty of my own to quietly handle.

Touring the New Hospital

We have a brand new hospital. My doctors all practice out of Silver Cross Hospital. In February they closed the old hospital in Joliet and opened a brand new on in New Lenox just down the road from the old one. It's even a little closer for us.

Quite a few of my friends wondered if I had seen the new hospital yet. We didn't go to the open house and I had only been for a doctor's visit at the clinic that opened two years ago. It was a nice building with very nice offices. And the Women's Health Center is exceptionally nice.

But honestly I really didn't have a huge urge to see the new hospital.

But, in an effort that I'm sure was just to satisfy my inquiring friends, I did pay a visit this past week.

I began my tour in the Emergency Room. Staff was very nice as usual and service was very fast. I do have a little to complain about one of the doctors who didn't seem to listen very well when I told him of symptoms of short blackouts and a feeling of light headiness. Apparently he called my neuro and told him I was dizzy. Duh!  I told him I'm ALWAY DIZZY from the MS. This was definitely not the same.

My next stop was one of the new patient rooms. This was very very nice. Nice colors. Cabinets and a "headboard" type wall area of oak. With cherry wood look flooring. And the bathroom finally had a shower!

Then I got to tour some of the testing facilities. The new MRI is larger and according to the staff is more powerful. From what I could tell, more power equals much louder. I "tested" the machine twice actually. And both times the provided ear plugs seemed almost non-existent.

I was also able to test out the new ultra-sound rooms and staff. Again, it was felt that I should go back a second time. I'm sure that was only so I could meet another one of their lovely staff. Their staff is so nice that one complemented me on my "beautiful carotids". I replied "Gee, no one has ever told me that before."

Another testing section that I had the pleasure to tour was the Neurological Testing area. Again, to make sure I appreciated the experience of the staff, I submitted myself to one of their tests. This one was my first EEG. Although the application and removal of twenty-six sticky nodes all over my head was a little strange. It was easy even for me to simply lie there for what seemed like a while in a dark room with my eyes closed. Oh sure, there was a few "open your eyes now close them" commands. The flashing light they used at the end was only slightly annoying and almost interesting to view the patterns it seemed to make behind my eyelids. The congenial staff member thanked me when I was done. I'm sure she was simply showing appreciation to being able to glimpse into what I'm sure is a rather intriguing brain.

Of course, while I was there I let other staff show me how the new hospital works. Everyone was very nice. Even the ones who seemed to take their training from vampires. These would come into my dark room at an hour that they insisted was morning to torture me with needles and finally suck the blood right out of my veins. They did perform their tasks with speed and efficiency so I admit I even have to give this department a good score.

Alas, not all of the new hospital is exactly new and improved. I was able to sample several creations from the culinary department. Certain adjectives definitely CANNOT describe the food - changed, tasty or variably textured are some of them. In other words - YUCH!

Over all I liked the new hospital. They were even kind enough to point out a few new ways my body has chosen to disappoint me. But now that I am aware of new challenges I can add and change my daily arsenal of attack pills and even add a nice new doctor to my contacts list.

While I don't recommend a trip to the new hospital, it is not a bad place to visit as an emergency destination.

On the Subject of Sleep

Here I am awake - again. I know.  I shouldn't be doing an activity like this - writing a blog post. I should be clearing my mind. Relaxing. SLEEPING!

But there are now so many reasons that make sleeping almost impossible now.  In this life. 

I used to have a very occasional episode of insomnia where I couldn't seem to stop the thoughts running through my head.  But most of the time I could lie down and seem to just melt into sleep. 

When my alarm went off in the morning I may have been perturbed at it rousing me from a good deep sleep.  But getting up was fairly easy and I usually had a good start to the day.

And of course there were the nights when I was going through menopause when a hot flash would wake me up. But even then, if I threw off the covers I'd fall back to sleep quickly.

But along comes MS and I have nights like this.

One of the biggest changes is my inability to sleep in a bed. There is absolutely no comfortable position.  After only a few minutes some part of my body is screaming from the cramping that develops. And if I don't wake up when it first starts, I literally scream out when I do.

I now sleep in a recliner chair. It seems that fewer body parts are pressed against the chair and so there is less cramping. My legs may still suffer but most of the time that can be relieved by putting the leg rest up or down. Then up again. Then down again. Unless it's my arm or back then I have to shift to one side or another. 
But even in the recliner I spend a good amount of time getting in a position which my body deems as comfortable to begin to sleep.

Getting to sleep also means making sure I am warm. I've worn socks to sleep for a long while but now I have to wear slipper socks on top. And now I need to wear gloves to bed to keep my hands warm enough to not cramp.

Once the socks, slipper socks and gloves are on I put on my Snuggie and tuck it closely around my shoulders, body and legs. Then comes the blanket. Again, tucked closely.

My nighttime ritual includes reading a chapter or so on my Kindle. This I need so I can enlarge the print but in something lighter than holding a book.  Reading usually helps to clear my mind and make me sleepy.

Finally I pull my hands into the sleeves of my Snuggie and put my arms underneath the blanket. Whew! If it took you this long to read all of this, imagine how long it takes me.

And then hopefully, I'll fall asleep.

Until I need to wake up to adjust my body or the recliner. Or I have to use the bathroom.

And there are often nights like last night. Yes, I finally did stop writing this, fell asleep and finished it in the morning. And yes, I do take something to help me sleep.

I am lucky in one big way. Being unable to work at least means that I can usually sleep a little later in the morning. And tonight I will probably sleep better. Even after my usual afternoon nap, I can bet that I'll be so tired when I lay down tonight that I fall asleep faster. Until I get a leg cramp...

Walker and Scooter Usage 101

I've been using a walker and a mobility scooter for a while now. So I thought I'd share things you MUST know if you are ever (and hopefully never) in need of these mobility aids.

First, watch carefully where you are going... because usually the only people watching out for you are only plotting the quickest way to get in front of you.

Running into someone is always your fault. OK, so they ran into you. Or jumped directly in front of you. Or tried to get between you and the wall in only 6 inches of space. They will blame you so you might as well just accept it. Otherwise you'll be known as the crazy person who can't watch where they are going. Oh wait, that was the first rule wasn't it.

I need to write an entire section on curb cuts. First thing to know with any kind of mobility aid is that every perfectly able person believes that it is so much easier to use a curb cut than actually stepping up and down the curb. This entitles them to wait to cross at only those curb cuts.

This may also mean that you have been slowed into crossing the street. Of course the cars will beep at you just as the light turns green because you have obviously blocked their path on purpose. And remember, the people who previously blocked your use of the curb cut to start across the street are also standing in line to walk up the curb cut on the opposite side of the street.

And I'm sure whoever decided that curb cuts need those raised dots was worrying about the blind. While my scooter can roll over them easily the same can definitely not be said of my walker.

Those are just as bad as trying to control my walker over those beautiful brick paver walkways and driveways. Don't clench your teeth as you chatter and clatter across. And although you have to hold on tightly, be aware that at any moment your walker may be stuck sending you almost over the bar. I guess you could view all of that as replacing the need to use a shake weight to strengthen your arms.

I could go on and on about problems you'll find even in places that are considered to be accessible. But I really think the only way to get through is to see the absurdities of the situations and smile instead of dwelling on the problem.
And if you're like me accepting your situation may be helped by doing things like "tricking out your new wheels". Here's a photo of mine. That reflector on the front is actually a folding cup holder with a reflective White Sox sticker I added on the front. I've found a great saddle bag. And when I needed new wheels, well, you can see that I went for the fancy pink rims... I mean legs.

I know I have MS when ...

I am thankful to God and cherish every moment my body feels good.

Leaning that little way extra triggers a bigger dose of dizziness.

I wonder why it's so light outside at 4:00. Until almost 10 minutes later I realize that I was waking up from a nap at 4:00 in the afternoon.

I am so cold that I wear gloves almost all of the time. And although I had two gloves on when I went to bed, I woke up this morning wearing only one... and I can't find the other one anywhere!

A day starts by dropping one of my many pills on the floor. A worse day starts when I knock over the entire cup of pills.

I cannot get the hooks lined up correctly on the back of my bra. So I give up because no one will see me today anyway and leave it crooked. But then I order a couple of new front hook bras anyway.

I have to bend over to pass the collection basket at church and it upsets my vertigo so badly I'm still in that position after that person passes it on.

I am now saying "Is that what I said? Sorry, that's not what I meant to say."

I've learned that some idiots would rather jump in front of my scooter and risk getting hit rather than waiting 2 seconds for me to pass by.

I've learned that Some people need brake lights while walking.

On hot humid days my body feels the heat index INSIDE my air conditioned house.

I put on the dog's walking leash. Then let her go outside in the back yard by herself.

I'm having so much trouble getting up. Only to realize after several tries that I haven't put the footrest on the recliner I've slept in down all of the way.

I wake up with a hangover. But haven't had the fun of drinking the night before.

My to-do list in my head is gone. I now know for the first time in my life what "Out of sight, out of mind" really means.

There is a whole range of tones that I can barely hear at all and my right ear rings all of the time. And yet, there is an intermittent clicking sound somewhere in my kitchen that I can't find and is driving me nuts.

I can't sleep all night but I can't stay awake at all during the day.

My 8 hour Tylenol seems to have stopped working after only 5 hours.

My eye is already twitching by 11 AM.

I've found the cure for menopause hot flashes. Now I wear gloves and long underwear even in the house during the winter.

I look all over for the socks that I know I took out of the drawer. Only to realize at least a minute later that they are already on my feet.

The missing socks are a perfect example of my mis-remembering things. I'm not sure which is worse. Forgetting to do something or believing you've already done it.

I said "I WISH I HAD SOME PEACE AND QUIET!"

I'm sorry if I was shouting. It's just hard to hear above the siren. What siren?  Oh, that's right. You can't hear it.

I started this blog to record stories I wanted to be sure were remembered. But also to let off steam about my MS. Today is one of those MS days.

I am dead tired. While that's not unusual with MS. It is right now because I just got up from my nap. Not only does the MS make me fatigued enough to need a daily nap. But it often messes with it because of my tinnitus.

One symptom of my MS is a sometimes terrible ringing in my ears. When it started it was just in my right ear. A few months ago my left ear joined in the party. I don't think the level of the ringing changes really, only my ability to ignore or hide it.

When it is really bothersome... well painful really ... are times like today when I really wanted some sleep. I have my own fire alarm going off in my head. But at a slightly higher pitch. It's one of those kind of sounds that makes me wince.

I'd love to turn it off or at least turn it down. Even though I know it's caused by nerve damage and that I'm not actually hearing it, I do try to plug my ears. I will turn on a sleep sound app on my phone and try to concentrate on that. Of course, when I'm the most tired is when it seems to be at its loudest. Like today.

We're going to a church dinner tonight. And I very much want to go and have a good time. But I'm already afraid that I won't catch a lot of the conversation because I'll feel like saying "Can you please speak up so I can hear you over the siren?"

But Oh, that's right. They won't be able to hear the siren.

Uh... Umm. It looks like... ARGGGH!

I've always been OK with names. Not good. But only people that I either rarely saw or saw only in a large group would be tucked back in the memory and not readily where or when I needed it.

Then about the time I turned 50 I started missing a few other nouns. A beautiful picture of the person or item would pop into my brain but the actual name would be missed for a second or two. It was frustrating but then I saw an episode of Oprah about menopause that explained that missing nouns was a common symptom. Knowing that didn't help me remember any better, but at least I had an explanation other than early senility.

But beginning with my huge leap into the MS world my memory now frustrates me regularly.

Now any word at all can be missing in action when I am about to rely on it. Usually in the middle of a conversation. Nouns are the worst of all but at least for them I simply give a description of the item. Remember the old Password game?  Missing verbs are more of a charades game as I demonstrate with fingers, hands and sometimes arms and body.

Adverbs and adjectives are the easiest for me to simply skip but are my most regrettable loss. Google has been a great friend while I'm here on the computer. Open another tab or window, type in the word that is coming to my mind. Which is usually the exact opposite of the word I really want to use. And Google graciously returns words that are close if not the exact word I want. For example, "comforting opposite" lead me to the word regrettable above.

I have learned that in MS land cognitive fog is quite common. Cog fog rears it's head in other ways as well. When I used to wonder where I'd put something I could flash to when I had it last and quickly follow the item it its location. Now I'm more like "You gave it to me?  Really?". Mentally reminding myself to do something would put it on the to-do list that was always there when I needed it. Now those mental reminders are many times remembered - only now my brain seems to have converted it to already having been done.

Time is another victim. 36 years of my marriage seemed to go by like lightening. The episode that brought on my MS diagnosis started just after our anniversary two years ago. These past two years have moved at a snail's pace. Instead of "that seemed like yesterday" has become "it was only two years ago? It seems so much longer".

There is a good part to all of this. All of the days in the past two years seemed to floated to a new strange and almost inaccessible area of my brain. Even the bad ones.