MS AWARENESS MONTH PART 2
CONTINUATION OF MS AWARENESS MONTH
that can be found here..
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
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.
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.
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)
(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?
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:
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...
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.
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