MS AWARENESS MONTH part1

THIS POST WILL BE LONG...IT WILL BE RELATED  DIRECTLY TO MY JOURNEY OF THE SYMPTOMS, TO THE DIAGNOSIS, AND NOW  LIFE WITH MS. 

NOT EVERYONE WILL CARE TO READ...BUT WILL BE WRITTEN FOR THOSE WHO WANT TO LEARN, WANT TO TRY TO UNDERSTAND, OR ARE JUST CURIOUS. 

MS IS OFTEN REFERRED TO AS A "SNOWFLAKE DISEASE" BECAUSE ALTHOUGH WE ARE ALL THE EXACT SAME AND LIVING WITH MS...THERE ARE NO TWO STORIES THAT MATCH EXACTLY. 

THIS IS MY SNOWFLAKE....

MULTIPLE SCLEROSIS...IT IS THE "NEW NORMAL"

I had a different thought process for my next post, but since this is MS awareness month...I thought I would expand on this fun disease that has brought me to this "new normal" I now exist in. This will also serve as a document for my children to refer back to if they ever need..lol, cause no telling what parts I will forget over time :o)

Where and when did this even start?? I can pinpoint only the most "noticeable" episode. I say noticeable because for years I had suffered from so many different things, that were explained by other diagnosis'. But in late Spring of 2010 I had my first attack of blindness,,,I was at work counting down the drawers as I did every night. At first I thought I just couldn't focus, and tried blinking my eyes and rubbing them to get the focus back.. .nothing worked... there was a grey cloud that had completely come over BOTH of my eyes. I could see, but it was like looking through the old school shower glass...so all I could see was shapes pretty much. I sat down, freaked out a bit...I know the management didn't believe it was real, just me trying to get out of work...but I was sincerely scared. It took only about 30 minutes for my vision to return to "normal", placed in parenthesis because quite honestly...it's NEVER been  normal since that night. I dismissed this oddity with blood pressure rising from stress, and really didn't give it a second thought....until it happened again.

 The visual issues consistently increased making a day without either an optical migraine(flashing prisms in my field of vision) or blurred to blinding episodes was considered a BLESSING. I  was having blurred vision in my left eye, the blinding spells were happening regularly, but always for only less than an hour. I was experiencing very nauseating  double vision, the blurry left eye, sea sick eyes (which is when I would read or write, things would bounce around and give me a very sea-sicky feel,

 I finally went to the eye Dr. in November 2010 and...was given glasses Eye Dr in 2011 a whole NEW prescription for my eyes (nothing even remote to the original RX), and 2012, again a totally different eyeglass prescription and the words from the optometrist....you are right on the border of being legally blind in your left eye.....hmmmm.....it didn't even seem to register in my brain these 3 years of glasses being all way off from one another is abnormal. I knew the glasses I was given never seemed to "work" right...some days they were a perfect fit and I could see so much better, and other days, made everything worse....I just thought I had "weird" eyes. My beautiful blue eyes were failing me.

Moving away from the eyes for a bit....

I was diagnosed Bipolar way back years before, and had dismissed many other "symptoms" or signs  to that illness. The fatigue....I spent years just thinking I was "lazy" and or in a depressed state. It would  be  no big shock for me to stay in my pajamas all day and lay around doing close to nothing for days on end. Let's put it clearly...if I showered AND got dressed in the same day...it would be "where are you going?" from a family member. If I decided to clean the house ....the question was automatically "who's coming over", if I actually cooked a meal and did all the other things mentioned above...."Oh she must be in her manic mode".....so you see, the fatigue I experienced ...I didn't even know was fatigue. I assumed I was just lazy. As a mother and a wife, that takes away so much of your value to the family, and I struggled with what I "looked" like to these people who depended on me. How depressing it must have been for them to have this "sloth" as their Mother and Wife. My kids nor my husband could not bring anyone home,,,I couldn't keep the house clean for anything...and it was NEVER company ready. My friends and family  knew very well...., I am NOT the friend you just pop in on. And, if you did pop in on me....I'd stand outside and visit with you, because NO ONE was invited in to see MY disaster.I was embarrassed, but it honestly was out of my control. I wonder how much of this "laziness" was fatigue associated with a disease that has been inside me for years, but hadn't been fully triggered until 2010.....I may never know the scientific answer, but I do know...that ...Multiple Sclerosis is often misdiagnosed in early years as... Bipolar Disorder. Something to ponder the rest of my life.....Bipolar....lazy...or beginning stages of my MS.
I do recall vividly a conversation with one of me best friends probably in 2012, she told me she truly felt there was more to my issues than Bipolar, and although at the time I got very defensive...because  I hated to have to "defend" my Bipolar diagnosis, it was much more of an emotional attachment I had with that diagnosis than anything. That label...the Bipolar label did NOT excuse my behaviors, but it DID explain them. If it wasn't for the "pretty box with a bow on it" called Bipolar, then I was just a lazy, depressed, raging bitch, emotionally unstable woman, with erratic behavior.....I honestly for the first time was ANGRY with her for that statement...what I didn't know then...was she saw something deeper than a quick fix labelled Bipolar. I see now the full picture of what SHE was was trying to get through to me, and I love her for it....but again, goes back to...was I misdiagnosed all those years???? Maybe she is the ONLY one who saw what we were so used to, that we couldn't see.

I began working at Kohl's in 2007...I NEVER missed work, and I was the dependable one they could call in when other flakes called out. I had NO time off from work for anything besides a hysterectomy, 2009, and a visit to watch our oldest daughter graduate from Army Basic Training in 2008. I had an impeccable attendance record....that was until 2010...my medical leaves began in Spring 2010.
By the end of 2010   I had exhausted all of my disability funds taking EDD paid time off due to my mental health and physical health, I wasn't working enough to replenish those funds, so the last 2 leave of absences I took from my job was unpaid. I just couldn't do it. I couldn't go to work without  SEVERE anxiety, complete exhaustion, and sensory overload that would cause havoc on my entire system. I finally quit after 5 years of service in the Spring of 2012, (I quit in April 2012...my year to date earnings that year was less than 400 dollars, that should put into prospective how much I WAS NOT working, while I was still employed.
 I have never regretted that decision to quit. Even though things only got worse as time went on. I thought Kohl's was the PROBLEM, I thought Kohl's drove me to being "sick", and once I quit....I figured life would go back to normal. It did...but to the "new normal"
 By 2012 I was having so many different issues I couldn't even imagine them being related. There were just so many things changing....could I be showing signs of "aging" already? For some reason many people in my circle of friends dismissed many of my little complaints and concerns as...well, you are getting older"...HUH??? .I wasn't even 40 yet...I thought the phrase"you're no longer a spring chicken" was for like 70 year olds....not pre-40 year olds. Why was that such an easy "excuse" for all things that ail us???

  I knew by this time , that I couldn't plan to do things 2 days in a row. No matter what I did, I needed what I called "recovery" time. I was slowing down to almost a crawl. Just the thought of something planned sent me into pure exhaustion. This whole too tired and unmotivated was far more severe than anything I had previously been use to. Things didn't happen over night, and there are only a few things like the first blinding spell, that I can pinpoint to a certain timeline. The rest of the "symptoms" gradually started happening, to where it took another year for me to realize....hmmm, something MORE could be wrong.
I had a painful tightness in my elbow joints that I found myself constantly "rolling" my arms to loosen them up. I would have sharp pains in my wrists, and these arms of mine just felt HEAVY....sometimes took everything in me to raise them up. To hold a curling iron or hair dryer.....nearly impossible. I decided after a few months of this sensation..I must have carpal tunnel.
 My legs were having the same issues...my left much worse than my right. The heaviness in them was hard to walk without KNOWING I had to move one foot in front of the other...in bed...oh that is where they felt like 200 pound weights were attached to them. David had always referred to me as a figgit....but this was way different. I would move them now, just to motivate blood flow. It felt as though the circulation was just plain cut off.
 My feet would be ICY..and there was NO relieving them once they got to the point of cold...that cold was DEEP in my bones. This is about the time I was using the heater in my car way into late spring....even at 75 degrees outside and  was warm enough NOT to have it on, but I enjoyed the heat, I needed that heat...I didn't even realize at the time I was doing it...but oh my kids knew...they HATED to drive with me anywhere saying you're gonna turn the heater on aren't you.....funny sometimes, how hindsight brings up moments like that. Or the times I would be in tears in the car because David would refuse to roll up his window...saying things like "why should I suffer just for you?? (this goes back to the was we treat one another in our relationship as brushed upon in BOY MEETS GIRL blog)  I would turn the car dial off of blue and put it on red....not ON but to have the incoming air that circulated would be warm...because I kid you not....the cold HURT everything inside of me...EVERYTHING! I would try to compromise and just place it in the middle....not red not blue....but the MIDDLE.....again, he refused to accommodate me, and I hated him for it...every time we had to drive somewhere. David had a sense of resentment towards me with my "complaints"...I doubt he ever sincerely believed anything I said about how I was feeling was valid, but rather just me doing everything I could to go against HIS happy life.  I had a NEW sense of resentment begin at that time that I had never experienced....why should I suffer for you???? Those words...oh how those words truly dug a hole in my heart that I doubt could ever be repaired. I had known for quite some time we were NEVER going to have a Country love song kind of relationship, but ... he just said,  for the first time out loud...your needs really are NOT important to me.

 I was also experiencing what all I could describe it as was....sensory overload...all at the same time...light, sound, and touch were so sensitive. If you touched my skin, I would flinch...as though it hurt. It didn't HURT per say..it just sent a sensation throughout me that was quite uncomfortable and borderline painful. The TV or car radio would be on so low that I could hear it just fine...but one more notch up would sound like I was in the middle of an Aerosmith concert, although no one else around me could hear anything. This caused more issues between David and I, because again...I was needing "special treatment". He would not compromise with me on this either. He said I just like to complain. I didn't enjoy it...I literally was miserable, and felt locked in a body that was now foreign to me with no escape from it. The sunlight, fluorescent lighting...oh...would hurt my eyes so bad and cause my vision to do things even now I can't even explain properly...it just "hurt" for lack of any other description.
 Going to restaurants or parties (anywhere really that is "active") would be and still is one of the hardest things for me to handle...the noise...the lighting...the many different conversations going  on in so many different areas....it's like my brain is about to explode trying to figure out how to TUNE out everything but who was talking to me.  My body will literally tighten up so tight I would love to find a fork and stab a holes all throughout my body to release the tightness...similar to when throwing something in the oven to cook that requires it to be covered...but requires VENT holes....that is what my body needs at those times....vent holes.

I went on for awhile longer just accepting that I'm getting older, and my low tolerance for people was just me being a "B" word. I really hadn't taken much thought to all these things that were happening to me over the last couple of years...I was just getting used to the "new me".

 By the end of 2012 I was having all the above problems, added by some new things. I was dropping things, there was a distinct weakness in my right hand. I was tripping from time to time, and my left leg was becoming weaker and weaker every day it seemed. I was having memory issues, and having difficulty finding words in a conversation. It was like my brain wasn't firing on all cylinders...just frustrating at first, but it got worse. I would ask Kristen I guess a few times a day...what time do you work today...she would get so annoyed because I guess I had just asked her 3 times already that day. I dunno...I don't remember asking...but she did. I started writing myself notes at this time..because I would forget everything.

  I had noticed driving was bringing on obstacles I had never experienced before. I was missing exits on the freeway, because I couldn't remember if I checked over my shoulder before merging over to get to the lane I needed....and did that same repeated check...did I check...check...did I check...so many times...I passed the exit I was trying to merge to. The first time this happened I just thought, you're dumb...lol...but it continued to happen over a period of time. It was REALLY noticeable and scary when I was driving David around. (stress trigger...but who knew that then, LOL)   I would have issues keeping the car in a straight line, maybe it was my vision, or weakened arms on the steering wheel...but there was a definite struggle to drive safely and in a straight line. I didn't know I was veering into other lanes...but my passengers did. I found myself not driving on days I KNEW were rough days, it just became easier to skip the grocery store trips.

 I remember waking up one morning with the weirdest sensation in my right foot...the toes felt swollen...like seriously SWOLLEN.....they felt like a water blister was on the ends of each of them. They had a sensation that was unlike the numbness tingling I had become used to...it was best described as when your hands are freezing cold like you were out playing in the snow...and you put them under hot water...THAT feeling...that is what my toes were feeling like.  I remember that is the day I had decided I must have diabetes...I mean Lord knows the amount of sugar I intake daily it was bound to happen...

 Those eye issues I had been having since 2010 were increasingly getting worse.  I noticed I could no longer play games on my phone. Now for some people, that wouldn't even be noticeable...but for me...it WAS. I can't describe it correctly, I know because I have tried....lol. But I could SEE the screen, but it just wasn't registering correctly what I was seeing. I also was having the brain function issues where my reactions were so delayed I could no longer complete a TIMED game. I knew at that point...something was wrong. YES it took a stupid game like Candy Crush to enlighten me something really could be wrong here.

 The cold...oh the cold. I know I mentioned it earlier, but it's worthy of another go around. I found when the weather turned cold...everything I complained about would increase..my body HATED the cold. I remember one time making meatloaf...the meat, the milk, the eggs...I put my hands in to mix it up as I had hundreds of times before....my right hand  reacted with violence...there was an excruciating pain the shot from my finger tip all the way up to my shoulder...it was shaking..it was in pain like 15,000 puppy sharp teeth were stabbing me. It literally took me to my knees crying in agony. Needless to say...that WAS my last meatloaf I ever touched. If a child asks for it...they know THEY will have to knead it. There was just something about COLD that I could no longer tolerate. I had hand warming devices, foot warming devices, and a heated mattress pad...I couldn't handle ANY cold weather or cold environment without it HURTING.

The final straw...and what FINALLY took me to call and make a Doctor appointment.. (yes up to this point hadn't seen even ONE Dr. besides the eye Dr.)
 I got in the car to go to the store. I sat down adjusted my seat... and couldn't turn the ignition over because I had NO idea which pedal was brake and which was gas. I just sat there staring down at the floorboard with a complete and absolute disconnect of what I was going to do. I knew I needed to step on the brake as I turned the key over....but could not for the life of me figure out which was which. At that moment I self diagnosed myself with a brain tumor.

 I made an appointment...FINALLY....wrote out a list of about 15 things that over the last couple of years were "off". I explained to the Dr. I knew none were related, however since I don't see a doctor regularly...may as well just throw it all in there. We discussed my vision, my balance, my weakness, my tingling, my very oily hair, my inability to use what I considered my full brain power, my tightness in the joints, my severe tiredness (ya the word fatigue wasn't even in my vocabulary then, lol) and a few more....I then told him...if I were to diagnose my problems, I have diabetes, carpal tunnel, and a brain tumor....I laugh now...but I really had dismissed everything else wrong but the brake pedal incident....weird, huh. The oily hair was a huge concern of mine by the way...you could fry a chicken on my head a few hours after it being washed...it was the ONE unrelated symptom, but hey...it was on my list hahaha.
 He did some exam stuff...talked to me in detail about everything, asked about depression...I avoided that conversation and lied (no Dr. I'm completely happy and content in my falling apart body) But I knew enough NOT to mention Biploar..because that statement makes even the best doctors turn off their listening ears. He made notes, ordered blood work..and said well let's start here, and rule out MS. I didn't react to those two letters because I had no idea what MS was.  Montel Williams has that, I think;  was my ONLY real reaction.

 That was until.....a few days later I got curious of course.... and went ONLINE... 

oh WebMD you big fat hypochondriac's nightmare and dream all in one.

 I read the symptoms...and I was reading with my mouth opened wide....OMG .. I could have skipped writing out MY list and just printed this page. It was literally text book symptoms. Here is one:

Multiple sclerosis (MS) affects the brain and spinal cord. Early MS symptoms include weakness, tingling, numbness, and blurred vision. Other signs are muscle stiffness, thinking problems, and urinary problems. 

I still hadn't fully grasped WHAT Multiple Sclerosis was...or what that meant for me...it was one of the most confusing research studies I had ever conducted. I learned as time went on...googling my specific symptoms and or sensations...better educated me rather than trying to take in all the scientific mumbo jumbo at once...what the hell is Myelin anyways?  (getting ahead of myself, because I had not yet been diagnosed, but researching this possible disease is what I do, I just like to educate myself)


He set me up with an ophthalmologist....did all those tests, he said well it;s NOT MS, because your blindness is always temporary, if it was MS it would have to last longer than 24 hours...okay...so what's wrong with my eyes? He sent me along my way with yet another EYE GLASS RX and a diagnosis of Pigment dispersion syndrome. My blue is flaking off of my iris. Hmmm, okay.

 I wasn't convinced I had MS at this point, but I had something going on. My "episodes" WERE too short according to all the data I had read. I didn't have issues in the heat like everything I had read people experienced...I had issues with the COLD..so maybe it wasn't MS, but...what was it. Certainly a neurologist would know. I can't be the ONLY person to complain of these things. I was hopeful, and still hadn't dismissed the possible tumor. The cognitive issues were only getting worse. (another new term I hadn't used ever until all this started.) I had to pull my car over one night...because I had no idea how to get home...out of nowhere...as I was driving, my mind went blank, I looked around and had NO idea where I was and how to get home from these strange surroundings. ( I in fact was just around the corner from my house...yes, I felt STUUUUPID...but it was things like that, that really scared me)

I went to the Neurologist...here's where I screwed up. I told THIS guy about all of my symptoms over the last few years....and threw in the I was diagnosed Bipolar at the age of 29. I swear I knew better...but at this point I was convinced something was wrong in my brain (the time elapse from initial Dr. to the neurologist was 2.5 weeks) I had almost crashed my car into the garage door a few times, my reflexes and respond time had gotten so bad. I wanted everything on the table and I wanted a full exam and hunt for what was wrong. He scheduled an MRI and told me I was having migraines. Hmmmm...I had never had a migraine in my life...that makes NO sense. He said, you said you have headaches...I said I HAVE headaches that are a RESULT of my vision issues. the blurry, the double, the seasick eyes....THAT gives me headaches. It's a reaction to something else. He asked if I had ever taken Depakote I said yes while being treated for Bipolar, he said you don't anymore?? I said I hadn't been on BP medication for about 4 years. (HINDSIGHT...KISS OF DEATH FOR ME)...He gave me a list of foods to avoid that trigger "migraines", an RX for Depakote to manage the "migraines", and see you after your MRI.

Long drawn out story...he told me my MRI was COMPLETELY normal, with nothing noted as concern....and I was having migraines, as he originally noted. I said I am NOT having migraines. His response was....as many times you tell me you aren't having migraines, I will tell you you are. Oh he pissed me off, but I was desperate...I pleaded with him...if what is going on is NOT neurological...what could it be...where can I go...I want to feel like ME again. You ready for his response..." I don't know what ME feels like, but if you want my honest opinion...you need psychiatric help and nothing else.;"

I was in complete and utter disbelief...and rather than show him just HOW CRAZY I AM (cause Lord knows I can show a man crazy) and validate his statement. I said thank you for your time, I would like all of  my medical records please.

Sure enough...in HIS notes after everything I had told him and his initial exam notes was this:

PATIENT HAS BEEN DIAGNOSED AND TREATED FOR BIPOLAR DISORDER, 

(NON COMPLIANT WITH TREATMENT PLAN)

There it was...and WHY I normally would have never said a word. The minute I said anything about a mental disorder...he checked out, and dismissed everything. Like I was BORED and wanted some excitement in my life, and multiple doctor appointments 100 miles away from my house was how I dealt with my boredom...as though I was needing attention...oh I was crushed. I was mad, and I was STILL not "normal".

Now, please understand I did NOT have to OR even want to have MS, but I did WANT an honest exploratory hunt into what was wrong with me. I didn't care WHAT was found, if anything at the end of it...maybe I was just crazy and imagining all these crazy things....but put forth some effort into discovery....I am a human after all. Yes, after reading everything I had read about this disease..it looked like a duck...and acted like a duck...but  I wasn't sure it WAS "that"  duck.. I wanted a definitive answer, a good attempt at helping solve the mystery.....not an egotistical overpaid Doctor to dismiss my concerns like I was unworthy of his time.

I left that office shattered...and before I could bring myself to make that 100 mile drive home I opened up my MRI report that he said was "normal".

DIAGNOSIS AND KEY FINDINGS:

(imagine my surprise when there are words underneath...because I was told NORMAL, shouldn't that area be blank???)

2 MM AREA OF INCREASED SIGNAL INTENSITY blah blah blah  CORPUS CALLOSUM WHITE MATTER  blah blah blah AN AREA OF DEMYELINATION/GLIOSIS. CLINICAL CORRELATION IS NECESSARY REGARDING THE ETIOLOGY AND CLINICAL SIGNIFICANCE.

(but hey....it wasn't a tumor!)

Well....that doesn't sound "normal". I didn't know what it meant...but I knew it wasn't as he claimed "normal". I went home, deflated, and no closer to answers as to why everything to do with my body seemed to be going out on me. I started to doubt myself...doubt everything I was feeling. Was I creating all these issues, making myself sick as some had told me...was it all the diet Pepsi I drank making me ill...heard that one more than a few times too.  My last visit was in April 2013 with the neurologist Dr. who diagnosed me "crazy and non compliant with migraines" I decided to just go back to ignoring all my problems...because he said I was crazy...maybe I was. Maybe if I just ignore it...it will go away. Maybe I had read too much, and all these things were just being created by my mentally disabled mind.


About this time, well....long before really....David was just "over it". He and the kids were done with the "drama". They didn't care if I was truly ill, truly was experiencing scary things within my body, nor did they care to engage in any REAL conversation about what was happening.  I heard "self diagnosis" more than I care to remember. There was nothing I could do that they didn't feel was an "act" or an overdramatized episode.  The eyerolls that came from every one in this house, was too much for one to bare.  You know when you ignore somebody or something in hopes that it will go away.... THAT was my family! Ignoring everything and believed nothing was real.  I was just using this as another excuse to "demand attention". I was tired of my body not working or cooperating with me...I was even more tired of my family treating me as though I was a lying, over dramatic burden, in essence without them ever saying it...my home, where I should have felt the safest and most secure....I was treated like I had Munchausen Syndrome.  It's still an MS if you think about it...lol

Dr. Migraine won. I was giving up.... 

Whatever I had going on....real or created...I couldn't battle my body and my family any longer. 

TO BE CONTINUED.....in a day or so

( it was becoming too long..so decided to cut it in 2 parts)
part 2 is here
http://jenlynde.blogspot.com/2015/03/ms-awareness-part-2.html