Random thought-I'm not even Golden Yet

Okay. ..so last night as I grabbed my purse to go to bed it finally hit me why Sophia always carried her purse around with her. ...either Dorothy,  Phil, or Gloria must have been thieves as children.
For the last few weeks I've been carrying my purse everywhere with me. ..hmm.. I'm understanding sophia petrillo so much right now.  Am I destined to lug my purse everywhere with me. ...even in my 80s???
Just a random thought. .

MS part 2

MS AWARENESS MONTH  PART 2

CONTINUATION OF MS AWARENESS MONTH 

that can be found here..

http://jenlynde.blogspot.com/2015/03/ms-awareness-month.html

Let's recap real quick....I had weird symptoms, I had a few Dr. experiences that left me hopeless and with more questions...and a family who thought the MS I was hunting down was more appropriately named Munchausen Syndrome. I was beaten down, and feeling worse by the day.

  Nothing was getting better.  those same things were happening, the left visual issue was now venturing over to play in my right eye...my balance was increasingly getting worse. I could not keep my hands still to take a picture, they shook so bad. I started using a tripod on all photo shoots, but i still had to put my hand on the camera  to SNAP the picture. So, I went and got a remote shutter clicker...because I just couldn't control the shakes. My left leg was as weak as my right leg now...my body was itching like I had scabies....no seriously...it was an insane itch. Usually at night when I was cold.

I remember I LURKED a lot in MS forums ... looking for questions that I would ask...reading answers, trying to see again...could this be?  It still looked like a duck, but there was just one thing missing .... that do many people talked about.....I was missing a 

(trumpets playing)"TA-DA" moment (trumpets playing)

 a undeniable episode of complete blindness or totally paralyzed in any one of my limbs to assure myself it still could be MS, and continue on the hunt for answers. If it wasn't MS...what was it??? I wasn't convinced either way. but I was still aware, something wasn't right.
I recall reading answers to people's questions about their symptoms on those forums, and how many times I read in response

"THAT IS NOT AN MS SYMPTOM, NOT EVERYTHING YOU HAVE IS MS RELATED, GO SEE YOUR DOCTOR"

Those words...seemed to come up in EVERY topic. I was encouraged many times by people's experiences...thinking...nope...that's not my duck,...and in moments discouraged, because there were many posts that just about to a tee described my duck....I was no closer to answers...just coming up with more  and more questions.

I returned to the "hunt" as Spring was turning into Summer. Now if you recall earlier I made a statement that I have issues with the cold, nut not the heat as most MS warriors suffer. Well....the painful symptoms that come with the cold are NOT a problem in the heat...but this summer I had an AH HA moment. I have always been very inactive and "depressed" in the summer month's. Dave always would ask "what's wrong"...I always just say "I don't feel good". It wasn't the flu...but it was like my body was going through the flu. deep aches...tired...worn down..ran over by a truck feeling. It literally was the lightbulb moment...well....hmmm..maybe I do have reactions to the heat...just not as noticeable and painful as the reactions to the cold....

I found a Dr. closer to home. I went with NO self diagnostic words. I just sat there, told him my story, told him the time it started, and how it has progressed over time. I went for a FRESH start with a fresh doctor. I sat there uninterrupted,  him asking questions that were relevant to what I said. I purposefully did NOT mention headaches...lol...but he asked. I had been having a great experience with him, so offered my thoughts on the headaches. I shared with him that the only headaches I get are from the eye issues I have, but more often now from noise that seems to really bother me at times. I just can't escape the "nails on a chalkboard" noise of just a TV on and someone trying to talk over it. The restaurant noises that were crippling me. I was honest and he was listening to everything I had to say.

He preformed his exam...I walked, he poked, he pulled out his little light...it was thorough. (mind you I had NOT yet mentioned I had seen any other Doctor..I was leaving that behind me.) After he did everything he did, he sits down with me in his office. He starts talking about Multiple Sclerosis and would like to schedule an MRI and nerve tests. I just so happened to have the MRI report and disc.  He goes over it, reads the report from Dr. Migraine (cause I had that too, even though I never thought I'd share it, lol) He compares his physical exam numbers and conclusions with the previous report...and finds "decline" in certain areas. 
 I decide to bring up the reasons I had for it to NOT be MS....no major singular or multiple attack, nothing major like my blinding spells was longer than 24 hours...things like that. Those factors were the ONE area I had difficulty with the possibility of MS, those 2 things seemed to point to NEGATIVE for MS.
 He took his time with me and explained the snowflake disease. 

"Jennifer, this disease, it is NEVER the same for any two people. Like a snowflake. The same disease, but a totally different look than the one that falls next to it. You may have what some would say "annoying" but not "truly" significant symptoms...but for you they are not minor, and they are many. Multiple symptoms all at the same time, can be just as exhausting and frustrating as someone who has lost all feeling in one or both of their legs.Someone who has had that paralyzing episode..may only have that and with a few other "annoyances" of the disease.Jennifer, do NOT compare yourself to others who have this  disease.. because there is no rhyme and no reason as to why and how this disease will affect each individual person. We can not as Medical professionals truly dismiss what our patients feel is a symptom, because who are we to say THAT is NOT a Multiple Sclerosis symptom.  If it comes from the CNS...we have to assume it IN FACT is directly or indirectly connected to the MS in the individuals body. The length and intensity is different for all patients. If nothing else has been learned, the difference in every patient is that.

I was given a diagnosis of 

PROBABLE MULTIPLE SCLEROSIS

What does probable mean??????? It means because I only had the ONE lesion on the MRI...but everything else was looking like that silly duck...we had to wait for something else...for a definite or clinical diagnosis. I was just thrilled someone FINALLY validated everything I was saying, feeling, and experiencing. He did offer his final words to me as I was getting ready to leave...WHEN, not if...your next new symptom and or flare up happens...call me...and we will reevaluate. It may be next week, next month, or even years from now...but when it does happen...we will get you right in.

We ran nerve tests, and blood tests..more eye exams after that appointment..and I just waited. Satisfied that I was finally on a path with someone that took me seriously, and put forth every effort to get me answers that were needed to continue on with life without the 'WHAT IS WRONG WITH ME" looming over my head. What remarkable thing happened after this visit? I started to feel better. I wasn't as tight, I wasn't as weak...slowly I started to find energy to enjoy life again. I wasn't 100% better, but I was feeling so much better it was clearly noticed. All my tests that were preformed came back negative for anything else, the only thing noted was my CRP was very high, showing inflammation IN the body, just not the specific place, or why. But that was another indication for him to seek deeper with more tests. Also a diagnosis of ON (optic neurosis) (yes feeling like a guinea pig comes with the territory).

I continued reading and educating myself on this disease. I had the time many others are not lucky enough to have. I had the time to "accept" what COULD be. I now was not reading about symptoms and people's personal stories, I was now reading long term aspects of this disease. learning what my future could be like, trying to get the information in me to better prepare myself. 
 Don't be fooled...there is no real PREPARING for this..lol, but I was determined to get a grasp of things I could be facing. I wanted to know how this disease progresses, and what to expect. The snowflake theory...ya that kind of screwed that up, because yes...you can read 10 people's stories...and although they LOOK similar on the surface...they were all completely different. One could have fatigue that kept them in bed all day, someone else was tired..but still working an 8 hour day. My research was for nothing...I realized...my "control" of everything was lost, there was no way I could prepare or plan for the next 50 years. because I would have NO control over this disease...this disease has a mind of its own..and will do as she pleases with no regard to me.

The bitter cold...it returned in late September of 2013. All those amazing days I had had, the energy boost I was being blessed with...was ZAPPED away over night. It came with a vengeance too..like because I had a few weeks of pretty good days...I was going to have to pay for it now!!!!!!

I again was feeling all these pins and needles, numbness, tightness, agonizing bone chills...oh this was gonna be a fun winter. I didn't call the Dr. because these were all the same things I had already gone through. I just figured I was going to endure another painful winter. By the beginning of October I started dragging my left foot. I didn't even realize I was doing it. Someone mentioned it. I started paying attention, and I was absolutely "dragging" my foot behind me as I walked. I could not STEP..even when I tried..my leg just couldn't make that movement. I then had to start lifting it up by my arms if i had my legs crossed..it wasn't numb...I could put weight on it.it held me up at least. ..but I then noticed I had been compensating and was using the right leg in a manner in which until I paid attention, didn't even realize. How does that even happen? How can you not even be aware of your walking pattern being altered??   I called...I was seen within a week, but true to the way it always works....I was walking "fine" the day of my appointment. Well at least to my standards ...lol.

He ran more tests with his reflex hammer, and poking needles..I didn't feel his needle on my left leg til he got up past my calf. ...he compared notes,,,and he noted significant changes. My "walking fine" was in fact not walking fine at all..it was staggered and off balance. I was put on one foot to check balance..the left food holding up my weight...NOT A CHANCE..the leg began to shake and tremor...and poof I was down, well I would have been had he not caught me. We talked, we got into depth how the last few months had gone. He kept making notes in my chart, and requesting more information.  He sent me out for a few more tests and return in 2 weeks for another follow up. 

My next appointment was similar to the last 2 with him. .poking, proding, comparing to previous visits notes. .and he takes me to his office.  Brings up Gait ...first time I heard those words..but once he explained it...it made sense...as you recall..I was dragging my foot, and I was concentrating on NOT doing that after it was brought to my attention...my unconscious solution was I guess ... my left foot was now swinging outward in a half circle to make the next step... (now that I know about this...I do realize when it is happening, usually after a work out...or a very long or hard day....hmmm, funny how Dr's see things we may have never even noticed) 

October 23, 2013

 Multiple Sclerosis 
(1 lesion, demyelintaion, 2+ separate attacks of different areas, (eyes and legs being the 2 main issues)
and all other possibilities ruled out via tests)

 I left the Doctor's office that day...not HAPPY...not SAD...not CONFUSED.... and certainly not THE SAME as I was when I got there. Did I have a good idea that I was dealing with Multiple Sclerosis, yes, was I fully aware what that this disease was slowly but aggressively taking control of my body...absolutely. I was educated, well read on the subject, and thought to be ready for the words going on my file...DX-MS...but you're just not...no matter what. I knew for a good 6 months 95% sure I would eventually have the diagnosis..but...even then...it hit my gut like a ton of bricks. It is one thing to know...ANOTHER  to KNOW.  Was this feeling...shock? Was it disbelief??? What was this feeling, I still can't describe it, because there are no words to do it justice...it was just numbing, sobering, and not at all what I expected. But I had it.....I had "the duck".

 There are people in my life, that I personally think, believe I WANTED this illness...like it was what all the cool kids were doing these days....

you know those people..heck, .maybe you ARE that people...I dunno, I'm not judging, I'm just saying...the people who in their heart of hearts believe that a parent or doctor dealing with an active and or unruly child are quick to pull out the ADHD label,  well...the new cool thing for lazy Mom's, I guess we get the MS card. I was uneasy about the response I was to get from others who had treated me like I was "self-diagnosing" myself months ago.

 Like really..does that really sound even remotely fair? How sad that is how I viewed my family and some friends. I found myself defending things I was going through far more than I should have had to.  When being doubted whether by intent or not, is NOT helpful, it is NOT wanted, and sure as heck is NOT appropriate. 

I found my drive home that day to be filled with depressing anxiety of telling my family. I wasn't 17 and knocked up, I wasn't the one who threw wet toilet paper on the girls bathroom ceiling...WHY was I feeling this absolute fear and uneasiness to face MY family? Did I worry they would think I paid a Doctor to give me the diagnosis I wanted...would they think I was just lying about it...surely you can understand...the support wasn't being given at my home. Remember I have Munchhausen Syndrome according to them.....OMG I just realized BOTH are MS..lol...hmmm coinky dink? 

I stopped at a gym that day before arriving home. The one thing I had really focused on in all the reading I had done..is you CAN'T predict with this disease. There is NO guarantee of  what body part will be affected tomorrow. I was already so lazy, so used to being on the couch. I could very easily roll over and play dead and let the disease have it's way with me....I never for a second thought any differently...until the diagnosis came...that diagnosis gave me some fierce FIGHT within. I wanted to be active, I wanted to appreciate my limbs with a passion..because God forbid one day I no longer can use them...and I am left with just regret. I was going to FIGHT..I don't know where it came from, I didn't anticipate anything to get me off the couch EVER to be honest...but while I still wasn't sure what emotion was inside of me about the actual diagnosis...I knew I was going to need a ready and able body..to fight!
 How in the last year of research did I NOT know that injections were in my near future? How did I miss that? When given my options, I went with a daily injection called Copaxone. I hate hate hate needles, and I still to this day...wonder...HOW DID I MISS THAT?

 So...I tell the husband and the kids. Nothing changes. It's like I said..."I spilled the milk". I don't know exactly what any one specific response was. No one made any attempt to educate themselves, they took my word for everything. I realized early on; I could have said this is a terminal disease and I will be dead in 6-9 months...and those idiots would have known NO different. It was hurtful and disappointing to me that there seemed to be no real interest in what was happening to me, or how they could help me by just learning things on their own.  I wanted them to recognize the symptoms and understand them...and not roll their eyes at me when something I did could  so absurdly be related to MS. They felt as though I made excuses for myself, hiding behind a diagnosis...yet they had absolute NO knowledge of even a smidgen of what I was dealing with. Even 10 minutes of research would have enlightened these fools.
A few jokes at my expense was how they dealt with it. Example of the jokes would be this:

one of the kids dropped an item, like a pen or anything...someone else would say

 "Oh....it's the MS...he's got it too."

 None of it  really SET in until the Copaxone Lady showed up. (I mean she must REALLY have it if they are giving her medicine for it...right?) The "lessons in injections". Have I mentioned my fear of needles? I was to give myself an injection before she could leave the house. We all sat there, poking the water balloon thingy, laughing, making jokes...until the time came for no more water balloon...it was now time to inject my actual body. I took the needle...and...after about 45 minutes of.....OK, I'M READY..and then tears and I CAN'T...it was NOT my finest hour, but in the end I in fact COULD NOT self inject. David had to. That's when reality may have started to show in my house...because I certainly would NOT go to these drastic measures of daily injections, unless I truly was in need of them. Finally a little hope for me, David continued the injections for about 5 months, and I finally started to self inject. 
 I had printed out some articles and informative papers to share with David. The sad truth to that was I actually felt I needed the VALIDATION from these papers to prove to him, I wasn't just "faking" it, or using MS as an excuse of why I had little to no energy etc. I still felt like a "problem" in the household. One day I seemed fine, the next I was completely laid up in bed. They didn't understand it, and therefore were unsympathetic and rather rude about it all. 

The one thing that changed for me the MOST post diagnosis was my overall "feeling". I wasn't feeling SICK all the time, I was feeling nothing like the old me...but way better than the "new me" from the previous year. What changed? The stress of the "UNKNOWN" was gone. It is absolutely CRAZY how much stress can create so much chaos in a body. I was able to live weeks at a time in relatively little to no visible signs of a disease. I was enjoying life for the most part again. The stress of the unknown....has GOT to be the  most debilitating time of the disease to this point. I know what these little oddities are from, so I no longer "worry" about it. I have adjusted to the "new normal" quite nicely.
 My family is more supportive, although they still have no clue really what is going on inside of me. All except for my oldest daughter who recently had to read an essay for her  college English class. It was called....On being a cripple, by Nancy Mairs.
 (she chose this out of many options, because she likes to call me "crippple")
 She actually said to me..."I think that was the best thing for me...because honestly Mom, I just thought you were "putting it on", and exaggerating things. This really validated everything you have been saying." The smile that was put on my face at that moment, still hasn't been wiped away. I know she didn't read it FOR me, but the fact she read it and thought of me..and made her open her eyes to something I could never explain to her with her listening without judgement....is priceless. If I have just one person in my family of 6 who can to a degree "vouch" for me...I no longer am alone.
 I don't need validation...I know what I am going through. What do I need? I need the LOVE and SUPPORT from my family. I need an honest to God interest in what "my duck" is. I want them to not roll eyes, make fun, and dismiss my obvious struggles that I have here and there, as just an attention getting calculated move. I want them to be warriors WITH ME...not against me. I sometimes do feel selfish, for wanting them more involved. Just educated is as involved as I need or want...but why should I want that from them? Shouldn't that be something from within themselves? However this all ends...I do know this....no matter what...they love ME and they support ME...they just haven't included the MS in that love and support yet. :o} None of them are as bad now as they were in the beginning, they have all come to terms in their own way. Education just has never been a part of it...lol.

 I hopefully stay right here and the disease progresses no further...or, I may decline as years go by...there is no road map..because we all endure differently..all of us little snowflakes...but at this point in my life, I am enjoying when I can and what I can. I try to maintain a healthy lifestyle sticking with the gym every day and keeping my muscles moving and strong. I am fighting. I have no other option. I smile, I sing, I dance, I truly live life...with limitations... yes, but I still LIVE. 
 I take the opportunities I am given, I take the consideration of recovery time needed for after, and I DO everything I can...

I choose to live. I choose to LIVE with MS...

I have been diagnosed over a year now...the "new normal" has become routine.

I know the triggers...and do what I can to steer clear of them.

STRESS, FATIGUE, TEMPERATURE

those are my triggers...those are my KNOWN enemies.

6 months after my diagnosis, we decided to celebrate our 22nd Anniversary with our 25th Anniversary plans of a cruise.

 We didn't want my disease to take away an experience we had been anticipating for years. 

Taking it early...was NOT out of fear or conceding that I would be unable to in years to come..

we just knew...we couldn't foresee nor control the future...so

 We took CONTROL of a situation we could have control over..and have not once regretted it. 

Maybe in 2017 we'll do it again for our REAL 25th....who knows!

my final words...DO NOT ignore and dismiss things that your gut tells you may be wrong. Age is the easiest excuse to ignore things. I know for a fact, had my brain function not decline in the manner it did, I still would be completely unaware of a disease brewing inside. Only WE know our bodies...and only WE can advocate for our health. Our closest friends and even our families don't always  know what's best. If you question something...seek answers. If you run into Dr. Migraine....tell him to go fly a kite. 

It could be something, it could be nothing...

but NEVER leave it unattended. 

I was fortunate and didn't live in "limbo" as long as so many others. It's absolutely unfortunate and dreadful how hard it is to find a diagnosis for so many people. Whether it be the Doctors or the Insurance Companies that create that problem ...that number is horribly high, and they should be ashamed!

NOBODY wants MS....we just want answers...and we deserve answers.

 I had a bad experience or 2, but found a Doctor who listened, and acted on HIS instinct and experiences. I then was sent to an MS specialist, who has given me great care, great guidance, and wonderful support. 

I don't have carpal tunnel, I don't have diabetes, and I don't have a brain tumor.

             I have MS.

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