So in 2012 Things changed for me because I went on disability permanently. That was hard to accept. It did help with the stress on my body but it was really hard on my emotional self. My OCD really started to act up. I lived with other people at the time and it was too much when Others left their things in spots that I thought there should be nothing in. I would obsess over order and have complete anxiety in every social situation.. where people staring at me? judging me? It was terrible.
It felt like I couldn't breathe. I started having heart palpitations and would become so moody I was impossible to be around. So at the end of 2012 I was put into a Mental health facility to change around my mood stabilizers again. I was not suicidal but I was for sure in a state of distress. I asked to be put back on a Drug I had been on previously but that they had removed thinking I needed something stronger. So I went back on Trazodone. I have been on this since. It helps me sleep and keeps the edge of depression off. It is REALLY hard to sleep with M-D. I think for me this drug has been a miracle in that aspect. In 2013 at some point I went into a point of remission.
Sometimes this happens for unknown reasons for patients with dystonia. It didn't for me mean that my symptoms were gone.. but they had gotten better... more manageable. 2013-and the beginning of 2014 were pretty good. I have very few intolerable episodes and I was doing more I was being more social I met new friends. Things were pretty good. By the end of 2014 though things had begun to change again, this time not for the better. I started getting the migraines back. I started getting more of the muscle spasms and muscle pulling. Most of the time people cant see it happening but every now again it will be severe enough it will start showing. On this day I was able to show you in my legs what was happening. While the video was of my legs that morning I woke up with this happening in my legs shoulder, neck and behind my ear:
The myclonus began to become so severe that my movements also caused me to tear my rotator cuff in my right shoulder. This was causing me a substantial amount of pain. I saw a surgeon for it and he had told me it wasn't torn all the way through so that was good, he also said surgically repairing it would be pointless because with my movements being what they were it would be probable to happen again. So I started physical therapy instead. That was a little helpful, but that would be short lived. My Physical therapist was great she really did everything in her power to help and some days it did. She was always amazed when she saw me when they started working on my muscles she told me she wasn't sure how I was still functioning.
She said she had seen people in there with much less going on who could barely move. I just laughed. Simple truth is... I have never known anything other than this. So you keep going. You suck it up, you try not to complain and you keep living. I was seeing a pain doctor also at the time and on narcotics that I would soon after stop. They made pain better short term but they were tearing down my body, it wasn't worth it. I would still go in for trigger point injections where they would inject a particularly twisted or spasm muscle with lidocaine and muscle relaxant. I could usually get about 8 injections at a time. That cant be done as often because it breaks down the muscle, but it would give me short term relief of the pain and migraines.
*side note this also reminds me that for a few years I did Botox injections. This would kill over active nerves and slow things down. (or that's what its supposed to do) But because There was so much of my body effected that even with the max of 41 injection points I was only getting relief for maybe a week and not much relief to boot. They could only do botox every 3 months though. So I stopped that also.
This year.. 2015 - all hell has broken loose in my body. I had a hysterectomy at the beginning of the year that triggered some extremely bad storms that my partner and nurses got on tape. These are personal in nature as I am trying to sit down to go pee, you cant see anything though. So.. here is that:
This year has been VERY rough for me. After they sent me home from the hospital I was unable to walk on my own for a few days. I could barely move without a storm starting again. I decided at this point I was going to try Medical Marijuana. So I started using Cannibus oil and THC gummy bears. I tried a few other oils as well. They made me tired relieved a little bit of pain but they were making me depressed. So I stopped that as well. I have been having a lot of chest pain this year that landed me into the cardiologist. They said the electrical part of my heart isn't working properly but that it was nothing life threatening. They started me on some medications to slow my heart and that was working but then the chest pain came back 10x worse. I was also having lower back pain and burning in my legs. I was in the shower one day and noticed I had loss of sensation in my feet and legs. Not completely numb but There was definitely a difference. I landed back in the ER. While in the ER I started having storms again. They ran a lot of tests and Pumped me full of Valium. That was a god send.
The spasming stopped imminently. The burning stopped and so did my chest pain. Neuro came down and told me what I already knew that I was having a severe flare up. What I didn't know was how bad it was. My trunk muscles had been compressing my bowels for so long it had caused me to have severe constipation. It was also causing angina. Basically my muscles are squeezing my chest plate so it's putting too much pressure on my heart and lungs. Makes me feel like I am having a heart attack. I went home with Valium pills and saw my regular Neuro the next week. There was bad news and good. the Bad being that I still have a decline in stimulation in my feet, they don't think it is permanent they just think its due to my body being so constricted. Bad news also being that they really don't have an idea on how to long term solve the constriction and with my Bowel not working as properly I am having a hard time actually keeping enough Valium in my body. They thought they would have me do valium injections at home but they determined that filling the vile would be too difficult.
So they started on a rectal gel. Yes that is as awful as it sounds LOL. In the mean time I am going to see another allergist. They are testing me again for allergies.. they want to try to put the DBS back in. So I will be doing that. They are also submitting to my insurance to try a trail of Sodium Oxybate. (basically known as the street drug GHB) Because in other studies it has shown to calm Myoclonus. The downfall is it also can cause seizures. As of today the Valium works some days.. some days it doesn't. I am considering trying to get into the Mayo Clinic although I do the the best Neurologists in the country for movement disorders at Barrow's. I have even considered trying to reach out to doctors in England seeing is someone will take on my case, they have more research there about my disease. Some days I am too tired to fight honestly. Some days I feel like doctors are a waste of time. Those days pass and I keep going. It is really hard to explain to people how much of your life is affected by this. Its hard to tell people the amount of pain you are in. Even those closest to you. You don't want to be the downer you don't want to have people look at you differently. Its hard to make then understand that just because you aren't crying on the outside doesn't mean you aren't on the inside.
I smile... I carry on. Honestly there are days I DON'T WANT TO. But I do. Because there are people that love me.. because my presence on this earth is to learn about things. Even through suffering I still see good. I grieve. I grieve for the loss of a day that I couldn't do much but sit around. All the wasted time I grieve for. I grieve for what I want to be and what I am not. Please don't mistake this for feeling sorry for myself. I certainly don't. I am not on deaths door, I get to breathe another day I get to still find happiness I get to try to brighten other peoples lives with happiness.. I volunteer for A place called Crops of Luv. (https://www.facebook.com/Crops-of-Luv-112138497486/) Because I want to fill this world with Love and learning. Thats why I took this step out to make my life public. I know I am not alone.. And I want others out there to know you are not alone. Fight your fight. It is not gods curse.. or the devils infection. Whatever you are fighting its just your path.. It is a path that will teach someone something and we are always meant for far greater things than what we can even comprehend.
I ask for the people in my life just to understand. Understand that though I may smile some days I feel like I am at a breaking point, understand that though I may not ask for help I may need you to offer it because I am too proud to ask. I am stubborn.. I will almost never tell you I cannot do something. My parents did not raise a quitter. Be sympathetic but never feel sorry for me. I don't need pity...sometimes I just need understanding. My best friend Kenneth he is amazing. Sometimes us hanging out is just me laying on his couch and chatting about stuff because doing more than that is too much. He often picks me up because he understands that driving may be too much. Let me vent if I need to.. And when I cry.. let me. Don't try to tell me that its not a big deal or that it will be fine. Because at that moment it is not fine. Just understand. Understand there will be days when I wont smile.. when I cant force the happiness. Understand that you don't understand this battle at all. Though a lot of you understand a lot of it, you just cannot until you live with this monster inside you. Don't assume I am not disabled because I still laugh.. because I still walk, because I will push myself and do things. EVERY SINGLE DAY is a battle. There is NEVER a day that my pain level is below a 6- and that is the best of the best. Most days I sit between an 8-10. I Say these things for the people I know.. But I say them also for the people I don't for the people on the outside of watching someone else struggle. Love more folks... and Love harder. Inspire healing, help and give.
Tell your story, tell my story, teach people, just don't give up.
This ends my entry for today.
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