Genetic testing! Zebra results soon

Well, I’m finally getting tested for ehlers-danlos! Excited to know if that’s the cause of my Zebra self. My genetic counselor is also running another type of panel on me. He said my symptoms remind him of….Dystonia.  F*ck. (scuse my language). I had run into that word before and felt it was reminiscent but wasn’t fully on board due to the literature not quite matching up with my symptoms. So I joined a Facebook group for patient experiences and sure as shit, it fits. My son is also showing those same signs. (disgruntled angry mom about this).

Those crazy vibrations? Well, it seems common in this group. My muscles are also pretty tight for being on bed rest most of the day. I should have atrophy, I don’t. Guess those vibrations are keeping my muscles from completely relaxing so I’m exercising without intent, so it seems. I’m really nervous about this one as reading about it sucks. I don’t think there is any family history of this. It also might not show in my genes so if it doesn’t, off to a movement disorder specialist to get checked out. Knowing that my son is exhibiting the same signs, I feel strongly, it’s in my genes.

I got my periodic paralysis panel back and they found a VUS. Variant of Unknown significance. Typically they don’t allow free family testing for a VUS but they are studying this condition and since the frequency was non-existent, they are testing my family. My genetic counselor said the lower the frequency, the higher the odds for a pathogenic mutation. Makes sense.

So maybe soon, I’ll have answers as to why my body has fallen apart and why I am not so normal. Maybe the physical aspect of the military along with the exposures caused it to express? I never had signs of anything during my childhood. Then maybe the constant physical therapy kept triggering it? I guess that part doesn’t make sense as obviously it was triggered to cause physical therapy. Still learning. Still wanting to know WHY I was so healthy before I joined the military and yet so ill upon leaving it. Why!? No one else in my family seems to suffer like I do. They’re all healthy in my direct family line. Vaccine reactions to the onslaught of toxic goo given to me all at once? My body doesn’t process things normally. Anthrax vaccine? Some mystery experiment done on me?

I have so many medical conditions it makes my head spin. It’s also extremely embarrassing to list them all.  ME/CFS, Fibro, Migraines, tension headaches, IC, UC, IBS, POTS, autonomic issues, mild emphysema, possible HKPP (I’m almost certain I have this), and others…

The wait sucks. I’m waiting. Will update…. soon(?).

My Letter About Opioids

I was once physically active. I was in the military ready to fight for our country and give my life if need be. But I got sick. I’ve been sick since service and getting steadily worse over the last 19 years. The last 5 years have been brutal on me. My life was taken too young. I’m too young to have a handicap plate, says one doctor. I’m too young to have a wheelchair, I’m too young!! Well, disease doesn’t discriminate. Here I am watching my children lose their mother. All the activities I did for my son, I can not do for my daughter. “I want my momma back” says my daughter. She misses our play time, my attention, my cuddles. Don’t touch me, it hurts. I can’t go, I have a migraine. I’m sorry I didn’t cook dinner…again… I have lassitude and standing hurts. I’m sorry we can’t go, I can’t walk and it’s not wheelchair accessible. I’m sorry I can’t play that game with you, I have sensory issues right now and am in a flare up. I’m sorry I can’t take my son to all his special needs appointments, my driving is being hindered and my body is in too much pain to leave the house. I lay here, my upper body not wanting to support me being upright. My frame is a skeleton as my muscles atrophy and my weight is gone. I get partial paralysis when the temperatures drop so I can’t move real well. I live for every few hours when I can take that little pill to allow me to move for two more hours. I have come to rely upon that pill to get on my feet. I still can’t walk far or stand long, but I can do a little bit with that little pill. Imagine what I can do if I had a dose strong enough to knock back most of my pain. Imagine having a bit of my life back again so I can be there for my children and keep them out of trouble, giving them the attention they need as a parent. I don’t know what my future holds or how long I will live to see my kids grow up, but I would like to. I would like to without the pain that cripples me because I’m undermedicated. I have a high metabolism and a high starting tolerance. It’s just how my body was made. I’ve exhausted other resources and opioids work and work well for me. I don’t get high. I don’t get euphoric or even sleepy. I don’t understand how others can abuse them as they do nothing to my mind, only relieve the pain either a little or a lot depending on how much I’m given. I’m tired of being treated like a criminal or druggy for needing a med to survive just like a diabetic who is dependent upon insulin. I need my benzo to sleep as I’ve tried all the others and a safe alternative made me stop breathing. My body is different than others. My benzo stops the muscles that tighten and spasm and cause dystonia like symptoms. It’s the only thing that works as muscle relaxers have no effect on me. I don’t know why. It’s just how I’m made. I’ve taken them safely for years. I don’t take them at the same time and I’m smart with my meds. It’s my body and my right, right? When did others acquire the right to make medical decisions about MY body?
Here it is in a nut shell, I would be more than happy to sign whatever form giving consent to increase my meds to a dosage high enough to combat the pain and give me a quality of living risking death any day. I would rather have some semblance of a life and risk dying from my meds than to live here in agony and risk dying from being unable to tolerate the pain anymore. Where does that leave my kids? My family? I’m the glue that holds them together. I’m in palliate care though see a typical pain management center and yet I still don’t get enough meds to function. I’m not going to ever get better and I’m now watching my own child deal with my pain as it passed down to him as well. He’s a teenager. He’s tried tylenol and NSAIDS (He’s lucky he doesn’t have my mutation that doesn’t process NSAIDS), but they don’t work for his pain. I’m so scared for him. Will he ever get the opportunity to use what has worked so well for me at the right dose? He already doesn’t want to live. He lives for me right now. I can’t imagine what will happen to him when I’m gone. He has no hope for his future and I’m losing hope for mine.
Do you want a productive society? Truly? Like any meds there are risks. Like any med there are benefits. I should have the right to chose what I put into my body and stick with what works and use the appropriate amount for MY body to be productive, to give back, to help society rather than lay here crippled and watch my family fall apart because someone without chronic pain decided they wanted to make my medical decisions for me. I’ll take death and pain relief over this hell my life has become. I’m a veteran and I’m suffering and now my child is is suffering as well. Cannabis might be an option for some, but it is not an option for me. It should be legal for those it does help, but I chose my current med as I don’t get high and it really truly works when at the right dosage. I chose life. For now.

Fighting To Be Believed

One of the hardest things a person can go through, is having to fight to be believed by the medical community for whatever it is you suffer. It’s absolutely shocking how many stories I’ve read where Doctors or nurses yell at their patients, telling them to get up when they can’t walk, or flat out disbelieve the plea being made. It’s even worse when you have family or friends who do the same. I can not, for the life of me, figure out why anyone would ever fake an illness. Who WANTS to be sick? Who WANTS to give up their lives and lay there staring at the walls and be completely unproductive? I sure an hell don’t. In fact, it’s one of my biggest frustrations. I WANT to….. do so many things…. but my body betrays me.

The family and medical communities betrayal is absolutely the worst thing to experience during a time when your plate is full enough with all the disabilities your body is going through. There is absolutely NO justification for it. None at all. Zilch. It is NOT ok. Having invisible illnesses suck on the highest level since we look so normal but we’re far from it. Should I cut my arms in neat little slices to give a visible sign as to the pain I suffer? Learning to let go of it is easier said than done.  And with doctors working FOR US, they really aught to remember that and start taking us seriously. I’m glad I have some doctors that do, but they still think along the lines of ‘we’re all horses’ even though a Zebra stands before them.

I think that’s why some of us jump with glee when we finally have physical proof, such as genetic testing, or some other kind of sign that SHOWS we truly are ill. It also makes some of us want to go back and hit them all upside the head with the paperwork. I know I want to, to smack them in the face with what they failed to consider, or believe, or treat. With many more of us having those rare or uncommon illnesses and diseases, we need to retrain our medical community to start looking into them.  We also need an overhaul of the medical community from the top down. They’re failing their patients.

We should also have more attention brought to the public about how invisible illnesses work and affect us. Awareness of how normal we can look but how badly we can suffer. Maybe then, family will start opening their eyes to the truth and stop looking down their noses and gossiping about how ‘well we look’ and how we must be faking or looking for some kind of attention. It’s simply insulting.

And while I’m at it, please don’t cry to me about your fatigue or your painful hangnail. Most don’t know what true fatigue or chronic pain feels like. And yes, chronic pain patients handle pain differently. Our bodies become use to high levels of pain and learn to function as best as we can. So if we tell you our pain is an 8 while using our phones to read or get on Facebook, yup, we can do that and still be telling the truth. We handle our pain with grace as we suffer it daily and learn our own accommodations to survive.  Some days we might simply be done with it all and just lay there, resting our bodies and recuperating. No, that doesn’t mean we’re lazy. Far from it. Our batteries are drained and we’re recharging them.

I’ve had completely normal vital signs while suffering severe pain. I feel like my body betrays me when this happens as doctors and nurses seemed trained to believe that you have to have abnormal stats in order to be in pain. They need to go through classes on chronic pain and what that looks like. Apparently to doctors and nurses, it simply looks like drug seeking and yet, that is very far from the truth..  Believe your patients peoples! I’d rather give a drug seeker care and attention than to treat a chronic pain patient with suspicion and bias. It’s just not fair or just to those who truly suffer.