Tuesday, May 10, 2016

I've Moved! Well at least my blog has

I'm so excited. I have been selected to be a blogger on the Chicago Tribune sponsored blog site Chicago Now.

You can now read my stories, ideas and generally how I'm getting along with my life and supposed disabilities.

Please go to http://www.chicagonow.com/mostly-optimistic/ and please (please?!?!) subscribe there. I hope you won't be disappointed.

Friday, November 27, 2015

I Don't Have the Answers -- But I know it is not MORE HATE

Of course I watch and read the news -- terrorism, war, urban shootings and all kinds of violence. It makes me feel horrible. I really wish we could find wise people who would seriously consider solutions. I know I don't have solutions.

But I do know one very important thing -- the right solutions will not be based upon HATE!

I'm not naive. I know that bad and violent people have to be stopped. But apparently we haven't learned that hatred and violence are taught. And those that are hopeless and frightened are the most susceptible to those teachings.

Even here, in a land of supposed freedom and opportunity, those that espouse hatred and violence are the ones that view things around them as hopeless or frightening. And of course there are more than a few who know that kindling that hatred creates followers of those that are looking for ways to cure their hopelessness and fright.

What's the difference between a gang leader who builds his gang by claiming that violence to their enemies and suppressors will lead to riches and acceptance... and a politician who claims that hatred, war and  prejudice are the keys to our country's future? Both are building their egos and fortunes on the backs of those looking for easy solutions.

When does building walls and weapons actually really make us safer?  Instead of adding more anger and perseverance to those who have been kept outside?  This creates two kind of haters. Both then turn to leaders.

Some of those leaders will promise to build stronger walls and weapons. They tell the frightened people inside that they are safer and therefore superior to those outside.

But there are other leaders on the other side of those walls who whip up the fright, hopelessness and anger there to find ways to break down those walls. build even stronger weapons, and to use any subterfuge necessary to disrupt the lives of those who feel so blissfully safe and superior inside.

Hasn't history taught us that the truly intelligent share resources and education? Opening up minds and hearts to different ideas improves all and forms a much stronger base for the future.

Hate is never overcome by more hate. If people worked together on solutions that actually improve the lives of the hopeless, wouldn't that make it easier to overcome the evil and haters?

Tuesday, July 14, 2015

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.


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.

Thursday, June 18, 2015

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.

Monday, April 13, 2015

Our Court just isn't the same anymore

We built this house 26 years ago. We were the first house built on this court. There are only 8 houses on a cul-de-sac. Each house in our small subdivision is built on one acre of land. And the houses on our side of our court back up to undeveloped fields. It has been the perfect place to live and raise a family.

The families on this court remained the same for about 15 years. We were all friends and remain friends with several of them that have moved away. The new families that have moved in are all terrific people. There are new children who happily ride in strollers or ride bikes around our very safe court. It's been interesting to listen to the new owners talk to the old owners at some of our parties. And everyone still gets along very well.

Another house on our court was just put up for sale. And this one has me particularly melancholy. Roy and his wife Vi were the second family to move in. Their children were already grown but their daughter and son-in-law moved back with them for a while at the beginning and we all were happy to welcome the first grandchild born to neighbors on our little court.

Vi suffered from a brain tumor for many years and passed from us several years ago. After a few years Roy met and fell in love with Nancy who joined our group eagerly. And we were all so happy that Roy had found someone wonderful.

We live just outside of Chicago, and winters can and have been brutal. Summers get hot and sticky and an acre of land with a long steep driveway takes a lot of work. So it's very very understandable that Roy and Nancy want to move someplace warmer.

 But this is the fifth of the eight houses to sell. There will only be three of us originals left.

It could well have been us or Norm and Diane moving. Both Diane and I have problems walking. But we're both lucky that we built houses that have accommodated our life changes. Theirs is a ranch style home while ours has the master bedroom on the first floor.

And I guess you could say we've been some of "the old people" on the block for several years now. But Joe and I don't feel old. Well, at least not in our minds.

I'm sure after we say our goodbyes to Roy and Nancy, wish them happiness and good health and see them on their way, and welcome the new arrivals that I'll get over this funk. It's just so odd that I'm feeling this way and the reason that I'm writing this.

Thursday, March 26, 2015

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
Otolaryngologist - 2
Psychologist - 2
Ophthalmologist - 5
Neuro-Otologist - 2
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-

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!

Wednesday, September 11, 2013

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.

Tuesday, May 14, 2013

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.

Thursday, April 4, 2013

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.

Wednesday, February 27, 2013

Reasoning with a 3 year old

A posting on Facebook brought to mind another of my favorite stories.

When Phillip was three we were going to take a trip to Disney World. But a few days before we left he did something which resulted in earning him a Time Out.

At that time we owned the large orange couch you see to the right. Time Outs were served by him sitting on the middle cushion. It as far enough from the arms to prevent much playing and as you can see his feet didn't come near anything else. And since he was 3 his sentence would have been three minutes. During which the following conversation took place:

Me (mom): I am so mad at you now I'm almost thinking of not taking you to Disney World.

Phillip: But you have too.

Me: I do not have too.

P: Yes you do. You already have the tickets

M: That doesn't mean I have to take you. I don't really care if we take Motley (our dog) right now.

P: You can't take Motley

M: Why not?

P: She's a dog. They don't let dogs into Disney World.

M: What about Pluto? He's a dog and he's at Disney World.

P: Yes, but Pluto walks on only 2 feet in Disney World. Motley walks on 4 paws. They don't let dogs that have paws into Disney World.

The end. I couldn't think of a come back.

Friday, February 22, 2013

The Road Joe Traveled

My husband, Joe, is retiring on March 1st. In an age when employees and employers move from one to another fairly easily and quickly he managed to stay basically at one place for 33 years. And he stayed in the same profession for 43 years. I know he is being honored by his current co-workers this week but I wanted to provide a look at this wonderful man's career from my view since I've known him throughout almost his entire working life.

We met at a Mendel High School dance when Joe was 17. He was already pretty self-sufficient from working as a stock boy in a local liquor store. He even bought his first car on his own that year from his earnings.

But later that year he got a job at a small bank, Union Bank, a few blocks from Mendel. He became the evening computer operator. He would head over after school and run all of the computer processing for each day's end. For the many of you too young to know, thsee were the days when information was fed into a room size computer system by punched cards. And once in, the data was stored on large removable tapes. There were no screens and output was on huge usually green bar paper. It was all called "Data Processing" at the time.And although everyone knew of computers, how they worked was basically unknown and even a little scary.

But it was great work that paid well. Now he was moving around heavy boxes of paper instead of cases of vodka. He'd usually finish around 10 in the evening but would have to work longer for month end processing or when there were problems. He even bought himself a new car.

He was able to keep the same job while commuting to college. He soon learned that the really cool jobs belonged to the programmers. They were the ones who virtually controlled the computers and told them what to do with the data being processed. And Union Bank was interested enough in Joe to send him to programming school to learn the COBOL programming language.

Over the next several years he continued to program and even moved to a non-banking programming job for a short time. We even got married during this phase of his career. But bank data processing was something he really understood and he moved to the First National Bank of Harvey. That job meant steady working hours, a couple of new cars and two moves that eventually had us into our first house.

While working there he once told me that eventually he wanted to either become a president of a small bank OR work for one of the really big banks. So when he saw an ad in 1979 for a position at what was then The First National Bank of Chicago in computer customer services he applied and was hired. His was now a liaison between the departments in the bank and the computer programming and operations departments.

He was so proud to be working at the largest bank in the Midwest. The hours were even pretty regular. If problems arose with processing during the night he generally didn't find out until the next morning when he would have to contact the affected departments with status updates.

Then came the 80's. The First National Bank of Chicago started using it's corporation identity of First Chicago. Banking was deregulated under Reagan. So First Chicago began buying smaller banks. We had our son, Phillip. And we added a second car for the first time.

Joe's job grew. Now problems with computer jobs meant instant communication even during the night. First this meant the phone ringing at any hour. But it soon meant that Joe's pager seemed to be surgically attached and he was given a brand new portable phone by the bank.

ATM usage was growing exponentially and the bank wanted to give all of it's customers access to their accounts from any First Chicago branch or ATM. For customers this was great. For Joe, this meant moving to a unit in the bank whose job it was to analyze, plan for and finally convert all of the account data from each of the small bank's computer systems and integrate it into First Chicago's.

This also started another phase in his career. These conversions were usually done over a three day bank holiday weekend. Because the conversion schedule was so tight all of the conversion team members needed to stay downtown in Chicago so they could catch some sleep during long process runs but be back at the bank to review results or fix problems. This was done for each conversion and was preceded by at least one or more test runs.

During the 90's the reliance on instant account access now included customers being given access through the web and interactive phone banking. Fixing problems needed to happen just as quickly. The size of Joe's portable phone became smaller and his pager started including a keyboard and small screen to send text messages about the problems back and forth. But at least now when he was home it was in his beautiful new home in Mokena. Phil turned 16 in 1997 and was the new driver of Joe's 1986 Chevy Celebrity Eurosport. So that houses' three car garage was now full and included a new shiny red sports car for Joe.

In 1995, First Chicago merged with the National Bank of Detroit to form First Chicago NBD. First came trips to Detroit to evaulate and compare each bank's computer systems. Once it was decided to continue with First Chicago's systems Joe had to make trips to Detroit to plan and execute the largest import of data yet.

Then in 1998 came the merger with Bank One out of Columbus, Ohio. Once again there was the compare and evaluate phase. This time was a bit scarier. There were lots of duplication of jobs between the two banks when only one was needed after the merger. But Bank One had not completed it's own merger of data from its acquisitions so once again First Chicago NBD's systems were chosen to remain (whew!).

Joe was now had an office both in Chicago and Columbus, with weeks in Columbus happening more and more frequently. There was even an occasional trip to see his team in Phoenix. Thankfully, Joe was able to come home to Mokena most weekends. And Phil was away in college.

2004 brought another round of breath holding when a merger was announced with J.P. Morgan Chase. Once again Joe was on the team to champion what was now Bank One's systems as compared to those of Chase. This meant added trips to New York City. There were some weeks where Joe would fly from Chicago to Columbus on Monday, to NYC for meetings on Wednesday and Thursday, back to Columbus for Friday and finally home to Mokena on Friday evening. And yet again, the decision was made to keep the Bank One version. It was even decided to keep the I.T. teams in Columbus as well.

Of course I haven't even mentioned all of the changes to job titles and officer levels Joe achieved through all of this. Somewhere Data Processing became Information Technology. He worked through Y2K. The bank paid for a one bedroom apartment in Columbus but then decided he needed to cut back on travel and could stay in hotels. The travel cut back lasted for one month before he was back to being in Columbus almost every week.

Through all of this I was working as well. Most of it as a computer consultant whose office was in our home but whose time was spent mostly visiting various clients.Phil finished high school, college and got married in 2008. In 2009 I had to stop working due to what was soon diagnosed as MS. Thankfully for me he was able to spend quite a few weeks working from home after that. In 2010 we realized that I would no longer be driving so Joe sold his much beloved sporty car which by then was a black Pontiac Gran Prix GXP. My new mobility scooter would only fit in what had been my Honda Highlander.

Do to some foresight but a lot of luck, our beautiful Mokena house has it's master bedroom on the first floor. So  its three car garage now only holds one SUV. But it's on a wonderful one acre lot to which we purchased two additional empty acres in back in 2011. Joe can't wait to spend time working outside when the weather is nice. And then building a Lionel train room in what used to be my office upstairs above the garage.

I've watched, listened, been elated or been depressed through Joe's very long but enormously successful career. I've been home waiting through conversions, new installations, and disaster recovery tests. I've waited for late or cancelled flights. I waited to hear from him after he was flying when two planes hit the World Trade Center and one hit the Pentagon but the news didn't know from where they had originated.  But I've been so lucky that even with all of his travel for work he actually enjoys using his frequent travelor miles and points to go with me on many vacations.

I can't begin to say how much I love and admire Joe. He has never given anything but his very best to both his job and his family.

But I'm so happy that he's going to be retiring. And finally giving himself the time he so richly deserves.

Wednesday, January 30, 2013

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.

Tuesday, January 8, 2013

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.

Saturday, December 15, 2012

My View of the Soul

I'm really not sure if I read this somewhere or if the idea just came to me. I know I had read that the density of a black hole is infinite. I read it described as the density of the star that had become the black hole had been compressed into almost nothing.

If you really knew me you'd know that my brain constantly takes one idea and runs away with it. Well, somewhere along the path it took after reading about the black hole I came to this thought and the more I stayed and rattled this around my brain it made more and more sense.

What if the soul was just a piece of energy?
What if when we die this single bit of energy is release from our bodies? And .....

Does what?  Goes where?

My first thoughts were very dark and negative. I recalled the notion that when we die we become a new star in the sky. That idea just didn't seem right. But what if our piece of energy was trapped after our death. Even it became part of a star, if that star burst into the nothingness of a black hole could the soul's energy be trapped forever? That this could be the hell to which a soul could be damned seemed like it could be true.


What if the soul of a good and deserving person simply was free to do what it wanted and needed? Could it then be anywhere? Be aware of everything? How incredible and wondrous that would be! A real heaven!

And what if it could then pull other bits of this same energy together? Work together so to speak. To provide a type of presence. Would that be the warmth I know I feel when I ask for help and comfort from loved ones who have died?

Once this thought came to me I was immediately peaceful and yet almost elated at the idea. It seemed to answer so much, as least for me.

Although I still feel awkward speaking about and explaining this idea, I have been trying to convey it to people I know. Especially to those that have been through a great loss of a loved one. Or in times like today when many of us are mourning a great tragedy.

I am hoping that I can give the comfort to others that this idea now gives to me.

Monday, September 24, 2012



noun, plural ol·o·gies. Informal or Facetious .
any science or branch of knowledge.


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!


Friday, September 14, 2012

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.

Saturday, September 1, 2012

Why Life is Nice Here at Home

Thursday evening:
Joe is upstairs in his office but is done with his conference meetings so he's sharing a selection of tunes with the rest of the house (and the neighbors if the weather was right).

Friday morning:
Joe: Ever since last night I have Always Look on the Bright Side of Life running through my head.
Mary Ellen: Me too. Did you ever see the video or movie that song was in? I'll email the link to you (https://www.youtube.com/watch?v=jHPOzQzk9Qo if you haven't seen it)

Saturday morning having coffee watching outside:
J: There really haven't been a lot of squirrels around lately.
ME: Maybe that's because I've seen at least two hawks and heard a couple of owls.
J: But don't owls hunt at night?
ME: They're probably still out at dawn when the squirrels wake up.
J: So as the squirrel steps out to take his morning yawn down swoops the owl?
ME: Yep, and his wife is saying "Honey, the coffee is ready. Honey!  Honey?"
J: And as the squirrel is flying away in the owl's claws he's singing Always Look on the Bright Side of Life

Wednesday, August 22, 2012

Would you still for for an idiot if he/she ran for your party?

This looked like the voting machine I used to cast my first presidential election ballot in 1972. The voting age had been lowered to 18 and our polling place was in the next block in a neighbor's garage. My mother was a Republican election judge.

When I walked in and signed the roll she proudly introduced me to the other judges as her daughter who was about to cast her first presidential ballot. She took me to a machine and explained how to use it. I walked up to the booth and pulled that red handle to close the curtain behind me so I could cast my secret ballot.

Inside I read the names and carefully flipped the switches for the candidates I chose. I had been sure to read what I could about the major candidates which at that time meant that I watched the evening news and read the Chicago Tribune which was my parent's paper of choice.

When I was finished I moved the red handle back, my vote was locked in and the curtains reopened. I walked out of the garage / polling place.

But my mother quickly followed. "What took you so long?"
ME: "I was voting"
Mom: "That should have been fast. You should have just flipped the switch to vote all Republican"
ME: "But I didn't want to vote all Republican"

This was followed by an argument where we both used the obvious punches - You cancelled out mine or your father's vote. - Maybe 18 year olds are too young to vote - and others.

Somewhere in there I said "How can you possibly just vote for Republicans? Are there any other Democrats who would be better for the job?"

And after all of the introduction, that is the question for this blog. Would someone now really vote for everyone from one party on a ballot? And what if any one of those candidates was an idiot? Wouldn't that matter?

I liked to believe that my generation learned better than to follow anyone or anything blindly without question. We were the Vietnam generation. We learned that government could get it wrong. Even though that particular 1972 election re-elected a Republican as president we later learned that Nixon was a liar and a cheat.

And then my generation passed our desire to make informed decisions rather than blind loyalty down to our children. Our son, Phil, called me from his cell phone in 2000. "Mom, I had to call you. I just voted for President for the very first time. It was awesome." I know he was a history and politics buff but I honestly didn't think his feelings were that unusual for a first time voter. I mean we taught these kids well, didn't we?

We all had a good laugh at dinner that night when we finally revealed to each other how we had voted. I voted for Gore. Joe voted for Bush and Phil voted for Nader. Phil knew Nader couldn't win. But in his opinion Nader was the best candidate for president and Phil showed it with his vote. Joe gloated that Phil's vote was probably more of a negative for Gore than Bush which by the very next day and for months later the nation became acutely aware of. But for us it was just right. None of us voted exclusively Republican, Democrat or Green. We each had read what we could and voted for the candidates we felt would best fill the job.



Why does it seem now that people want you to vote for an entire party? Are ALL of the candidates from any particular party better that ANY of the candidates from the other? Does that mean that voters should no longer read all that they can about each candidate and individually decide who would perform best in that office?

Even if a candidate was an idiot?

Wednesday, June 27, 2012

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.

Saturday, June 16, 2012

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.


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.


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?????"