My Past and My Diagnosis
I have spent the first half of my life fighting anyone and anything that told me I couldn’t do something, and the last half trying to convince anyone and everyone that something was wrong...
The first half of my life: the fighting
I had a stroke as a baby, a brain clot to be exact and it came with a world that has never looked the same as it had to others.. Little did I know that that stroke was just the beginning. I was a shy child and was extremely bullied I was constantly made fun of, made to feel less than I was, and abused at school and you may think -dang kids are cruel- but nope it was the teachers who usually started the charge. The kids just followed their lead. Kids aren’t born with hate they are taught and in my case they were taught in school.
From the start, I realized life would be harder for me
I’ve been smacked in front of the whole class, I’ve been humiliated in unquantifiable ways. Then there were the teachers who thought they were trying to help who never failed to make my life so much worse. Because of their shortcomings as humans I always paid the price of friends. I had a teacher bribe kids with candy bars to play with me, and only when I said no did I find that out. I simply said tell her you hung out with me to get your candy and I’ll back it up. I was 9 and the first time I truly realized my life was going to become very hard as I got older. I just had no idea how hard.
See I’ve been to 22 different elementary schools In almost just as many states. Most people would think that would be a bad thing but never to me. I just couldn’t wait until we left for the next school (at that age you hope the grass is greener on a different play ground).
It wasn’t until I got older that I realized my mom was bipolar and could rarely sit still but also that she actually had a reason to feel the need to constantly flee. If I was a military brat it’d be understandable but because I wasn’t it was always “so sad” to people. We may not have been in “the war” but we were always fighting our own.
I grew older and was able to stand up for myself
I went all the way up to 8th grade (I went to a high school so small it was 6th-12th grade and my graduating class was 28) I just said screw this I will just make fun of myself first and everyone will laugh with me and not at me. From that point one I was the 1 and a half handed (1/2 because I can only use my left hand as a helper hand) chic that didn’t take any crap and I just used humor for everything. People started to gravitate to me and I was able to choose my friends. It was life changing. I finally stood up for myself and dictated how my life at the time was going to be.
I did have a child very young but everything happens for a reason and if I would have waited I’d never be able to have the pregnancy or birth the way that I did. I was told I couldn’t do it. Yet I was the best one handed diaper changer ever. I started nursing school and by this point I was very determined to prove the world wrong that I was just a kid in special ed for absolutely no reason. (I might have gotten my revenge on an ignorant teacher in 3rd grade) I was fighting and had enough fight in me for every underdog out there!
I became the only one handed person who figured out how to do CPR on a child without holding them in my hands I then realized that the instructor was watching me like a hawk and was shocked at how quick I came up with a plan given my disadvantages. She said I could be anything I could ever dream of. I was on top of the world.
And then I turned 22yrs old and my life has gone down hill. Then 30 my body started to roll faster then I could comprehend so I thought. Ha!
The second half of my life: the convincing
The last 7 years were the hellish years I knew were coming since I was 9. Physically speaking that is. (My emotions and things that happened in between is another story.) I have never had to fight so hard in my entire life for a grim future. Not just my health but also the damage my health was on my relationships.
My experience with doctors in the past
I went to doctor after doctor and each had a new dX but everything always came back to that stoke. I was offended every time because I’ve lived with that all my life. I’m not seeing so many doctors for something I know everything about (physically speaking) or our of the blue for something I’ve figured out long ago.
I would beg doctors to believe me, I would come completely prepared with pages of symptoms (omg the random symptoms I’ve had is insane) just to get constant conflicting information. One doc will say I have one thing and another would say there’s no way. Shoot I still don’t know who to believe!
I went through heartbreak with blind hope for every appointment I’ve ever had and without fail I’d leave either more confused or ready to turn the rude doctor in. I was so mistreated by so many doctors in this country I can only really remember 50 doctors but I know there’s more I just need a map of America to remember them all.
After all these years I started to give up hope and not just because of the horrible doctors but I couldn’t keep insurance in my life for anything. I won the lottery back in April and now by October it all changed overnight. Not for the good.
What I've realized from my journey
With all that said let me tell you the good side of life as I see it now!
I’ve been to enough pain doctors to realize they are usually only in it for the money and don’t care to much about truly helping people in need. Then I went to see a spasticity doctor and she gave me the referral of a life time. At first I was hesitant because I’ve been there so many times before. I asked if he was going to “be nice” to me. She said absolutely he’s extremely understanding and will truly listen to you.
The impact of one doctor
I saw him and wow! What a difference 1 doctor can make. He didn’t just listen he put his words into action and I had surgery 2 weeks later. I realize this solution is not for everyone because it absolutely comes with its share of risk. He wasn’t aware that I was that person that was going to be the risk. My body as I’m sure you can all relate has a mind of it’s own and I swear it’s just to give doctors grief. I was the exception to every rule.
I had an intrathecal pump inserted on July 30th and we all knew this was my last hope to have any relief at all. The pump is a baseball sized titanium pump that holds medication and then pumps through catheters that have been inserted into my spinal column and directly pumps morphine and baclofen into my cerebral spinal fluid.. It has completely changed my life. I don’t need scripts, I don’t need doctors other then him and this doctor and I text on a regular basis. He’s so extremely attentive that he always has time for me even though he’s a surgeon.
He will still text me on a Sunday to see how I feel and if I’ve gotten enough sleep. He will always let me decide when I want to come in not the other way around. We do have to be together for as long as we possibly can because once you get the pump you are sorta bound to stay close unless planned ahead of you must never ever miss a refill. (If anyone wants to know all of the worst case scenarios let me know since I had them all but I’m obviously on the other side of it now the good, the bad, the ugly). It just dawned on me that we’re stuck together no matter what. Lol.
He has said every time I see him which is every week to 2 weeks that he will always take care of me and I actually believe it. It’s the first time I’ve ever trusted a doctor with my life and my future. It’s also the first time I’ve had hope that I’d even have a future. With over 30 DXs I know we have just started and I have a lot of work to do but it’s worth it. I won’t have to be a shut in anymore. I’m still healing and still increasing my meds slowly but I’m ok. I know I have to work really hard but for the first time in my life I have something to fight for.
Take it from me - don't give up
To anyone out there who feels at the end of their ropes. Don’t ever give up because when you think your life has completely fallen apart sometimes something amazing happens and usually when you least expect it... I now use Advil or Aleve for my residual pain that will be worked out in time. It’s also the first time I can pinpoint my pain and not say “all over” I used to constantly feel like I was hit by truck (I an uniquely qualified to use that analogy since I was hit head on by a car as a kid) and now it’s just my neck, low back, my hips and knees. The pump is not magic but a miracle to me! I can use ice and heat for my pain and it actually helps. Prior to the pump. I used kratom (that you can get at a vape store) medical marijuana just to get off narcotics. So many doctors would say I was only in pain because of my 15 years of usage of opiates I disagreed since that medication help me get to that appointment and I was able work now I’m permanently disabled. Big I never wanted anyone to ever question my pain or symptoms ever again. Not to mention I also have bipolar that my stroke gave me along with Central Pain Syndrome. So you can see the doctors recoil and treat me like a loon or a drug addict.
I had a stroke because of a random blood blood disorder. Factor 2 gene mutation and my genes are mutated so badly. I have MS and RA and narcolepsy, and too many pinched nerves to count. I have sleep apnea from my throat being “too small” I have lung issues, liver inflammation for no apparent reason, daily fevers of 100-101.9 and that’s the only time I know I don’t have an infection because when I don’t have a fever I have an infection somewhere, (I know, I know I’m opposite and no one knows what to do with me including infectious disease).
I have dystonia, I have insomnia and also days I can’t stay awake to save my life. I’m cockeyed so I have balance issues, intense pain because it’s like one foot is walking in a high heal and the other flats. I can’t walk far but I sure as heck try. I have others but my carpal tunnel is killing me right now LOL!
There can be help and hope for you
I just wanted to give someone any amount of hope you can possibly muster because forever isn’t that long! Find your person who will fight for you and if they don’t then move on to another doctor Do not pay a doctor that doesn’t do anything for you! Doctors work for you and you have to step up and advocate for your health because no one else will.. Never settle when it comes to quality of life.
Pain is officially part of my life but I’m all about livable levels. And I am still convinced that if you take all of my DXs and put them all together they might come to a much smaller list of DXs and one day I won’t need so many “ologists” There’s help out there! Do NOT give up and live in an unbearable life. If you have any questions please ask.
I do sleep a ton hence the narcolepsy and the ability to deal with my pain until I finish my goals.
That’s my whole point.. I’m still in pain but I have been in pain for 37 years I’ve only had true hope for 3 months and it’s changed my whole idea about life. You will see me complaining and getting fussy but it’s always temporary. Statistically there’s always a chance!
Does your RA impact you financially?