A few weeks ago an ex-boyfriend from high school messaged me on Facebook. We’ve been Facebook friends for a while, but not really. He sees my posts. I see his. That is about as far as it goes. I was in love with him in high school. Stupid puppy love, innocent love you think is forever because he’s cute and sweet and makes you feel special, but neither of us really knew anything about each other. Not really. It didn’t matter though he broke my heart. Yada yada yada. I moved on and we’ve both grown up since then and have both had worse broken hearts since.
Then he messaged me about his wife or rather his ex-wife. They are recently divorced according to Facebook posting and it sucked. Not too long after she ends up in the hospital critically ill. Weeks after being sick and loosing ability to walk and other things she is finally diagnosed. She has MS he messaged.
He knows I am in the occupational therapy or something like that. I tell him I am in school for it. He wanted to know if I knew of any locations where he can take her for therapy. They have no insurance. It’s out-of-pocket and he jokes about luck and charm.
A man I use to hate for breaking my heart is now choosing to stick it out and help a woman, the mother of his children, through a life long disease, despite their divorce. I can it isn’t as fairy tale and as easy as it sounds, but his heart is in the right place…I don’t know it made me think how people can grow up. Back then he cared about himself and only himself and now….I don’t know. I guess I’m proud of him. Maybe becoming a parent did that for him. Maybe he saw the bigger picture.
I offered to send any information his way and chose not to tell him my story. What for? I don’t want to tell anyone, not even myself. I blog about it in hopes that it helps someone. I blog about it in hopes that a doctor will see that I am one of the many people they have turned into numbers and sent us away with pills but no cure. I blog about this to get it off my chest, maybe get a message from someone who can relate to me. In fact i did the other day. A person reached out to me and sent me an email asking if I took a certain medication. She noticed our symptoms were similar. I planned to email her back and tell her I never took that medication, but I didn’t email her. I couldn’t get myself to do it.
Those of who still don’t know, who are still trying to figure it out, who have been misdiagnosed, or ignored or have run out of insurance or…it hurts to keep hitting that brick wall, at least it hurts me. I don’t want to know anymore what this isn’t. I…
Last night we, my boyfriend, children and I went to a friend’s house. We had tacos, buffet style. We had movies, kid friendly. We had good talk, a little of everything. After the movie Trolls the dogs came up to me again and I pet them, something I’ve done my whole life when ever a pet is around. I am not very pet friendly but I know where there is soft when I see it.
So, there I am petting this beautiful white dog rescued from the pound, with clear blue eyes and he’s loving it when I notice my left arm begins to freeze. I could no longer use my left arm. I begin to spasm in my stomach. My left leg stiffens and as my son comes to give me a hug I kindly whisper not to hug me just yet. My boyfriend and my daughter see me and they tell my son I’m in spasm. But the spasms calm a bit after a few minutes. We all get up to eat left over birthday cake. I try my best to hide my limp and stiff arm. I sit down to eat cake. Its good cake. It has a little too much frosting but not terribly sweet. I hate super sweet cakes. I think about how my healthy eating for the week was just ruined by this cake.
I begin to feel a little light-headed but no big deal. I feel a lot like this these past few years. I slowly walk to the bar to sit on the stool and watch the grown ups in the kitchen, stiff arm, stiff leg. I sit down. I love how strong my upper body is. It makes getting up onto things much easier when my leg is stiff. I sit down and I’m dizzy. I’m tired. I feel….not all together there like I’m there but far away. My oldest sees me and asks if I’m okay. I tell her I’m ok just a little dizzy. She keeps watching me. I can’t look at her because I’m now just spaced out, but I’m aware of it all I just can’t do anything about it. I manage to get her to not take another goodie bag, like a normal parent trying to teach their child not to be greedy would, but I barely manage that.
My boyfriend comes over and asks me how I’m doing. I manage to say something like I’m okay, but I can’t remember what I said. he keeps watching me. I notice he creeps closer and then before I know it I hear my call her husband’s name, I’ve slid out of my chair and I’m spasming, my legs caught in my boyfriends arms. Someone has my head. he says something about like a seizure and they try to carry me up the stairs to lie me down and away from the kids, but we end up on the bottom steps and for a long period of time my boyfriend is holding me up keeping me from hitting my head and our friend is untwisting my foot from staying twisted and rolling over because I am whimpering over my ankle and hating on how difficult it is to breathe.
Our friend keeps telling me to relax and I want to say YOU FUCKEN RELAX when you can’t breathe, but the other part of me says he’s your friend he’s trying to help you. My boyfriend is telling him about dystonia and the stupid doctors saying its stress related and our friend says “Bullshit”. I talk when I can and try to make jokes or talk or soemtimes I mumble. I am completely embarrassed.
Finally, when my body relaxed enough for them to take me upstairs they did, but then upstairs it began again. So, after just a few minutes on the bed and after several spasm I went from laying down on my left side to sitting up and then falling forward off the bed. They kept me from hitting my head as I fell to the floor and then I continued to spasm. I think the whole thing lasted at least an hour, if we don’t count the stuff before the fainting or the locking of limbs after I was finally at least able to breath normally again.
The whole time I was on the floor our friend asked questions after question and suggested Chinese medicine and acupuncture because western medicine is nothing, but a pill popping culture. We couldn’t agree more. We understand medicine helps save lives, but it’s out of control how easily we are just told here take this, we don’t know if it will work or what you have, but take it or don’t bother me. I get sometimes some disease are about trail and error, but…I just know this isn’t stress related and I’m not taking an anti-depressant for it, because I’m not depressed.
As we left his house, my left arm still locked and curled, our friend realized and asked why I couldn’t just turn my wrist to unlock the stiffness in my locked arm. He has friends with MS and dystonia. I said to him, “because when I look at my hand (as I looked at my hand to show him) and tell it to turn at the wrist nothing happens. My arm doesn’t listen. My brain is not connecting to my arm or any of my left side. Someone else has to move my limbs to help them relax or I have to wait it out until they fianlly unlock. That is painful. Our friend then asked me, “why they haven’t checked you for chemical imbalances? Or,” he thinks for the word. “Neurotransmitters problems,” I interrupt. “Yeah,” he says. I looked at him and said, “EXACTLY!!!!”