For months before and after diagnosis I was in survival mode, if you could even call it that. I had a few improvements in energy that I’ll get into in a later post, but joint wise I was absolutely hating life. My shoulder was so bad I couldn’t stir something on the stove without involuntary tears forming in my eyes. The motion of scramble frying meat and breaking it apart was torture. I had to always wear shoes because the bones in my feet were constantly shifting creating more instability. I could only stand in front of the sink and wash dishes for just over 5 minutes before I had to sit down and take a break to sit with my neck supported. Either my shoulder and knees couldn’t take it any longer or my head couldn’t. I always felt like there was never enough blood going to my brain, it just pooled in my legs. Later I learned that this is quite normal. The veins in an Ehlers Danlos person are so stretchy, they just accommodate extra blood rather than pushing it back to the heart. This results in lower oxygen levels adding to fatigue and pain. When I was moving I did better because my contracting muscles were helping send the blood back to the heart. But when I was standing in one spot? I felt horrendous. It also resulted in major brain fog. I had to consciously fight to stay engaged when people were around me. I was distracted from pain, and the lower oxygen levels dropped my cognitive capabilities even more. Saying that I was desperate for this to change doesn’t begin to cover it.
Excellent Advice
In my first blog post, I mentioned how my doctor was dumbfounded by the diagnosis of EDS for me. He courageously, (most doctors are not that honest!) and humbly admitted he had no idea how to treat me. I didn’t blame him. He had done dozens of tests over the years leading nowhere. But he gave me some advice that would change the course of my life with EDS.
“I don’t tell people to ‘google’ what they have. In fact I tell them not to. It usually does more harm than good. But you need to search. Somebody, somewhere in the world is doing something that helps. Maybe a university in another country has done some studies. Find what helps. Come back to me, I’ll do whatever I can.”
So I did. I googled for months. I joined some online support groups. I joined some not so supportive online support groups! I quickly exited those ones, all they did was scare me. But so far I had only found people in the same boat as me, or many an even worse one. I kept reading and learning with the doctor’s words ringing in my head, “somebody, somewhere is doing something that helps.”
Then I found that somebody. That somebody wasn’t doing research in a university. That someone was a mom named Deborah Cusack.
Someone mentioned this woman in one of those support groups. Her story sounded too good to be true. She had deteriorated so badly she was in a wheelchair and wearing a neck brace, she started taking some supplements and now she’s out of the wheelchair? Not just her, but her daughters as well? I needed to explore this!
I joined their support group and for a while I just read, watched what questions people asked and what their experiences were. One of the first items on her supplements list was a specific brand of aloe. It had a signaling molecule in it to produce better collagen that EDSers do not produce.
Specific Bran of Aloe
I was petrified to try it. It seemed like people got a fair bit worse before they got better. Sometimes for a few days or weeks, for some it was a few months. There was a “healing curve” as ligaments and other connective tissue tightened and regenerated. I couldn’t imagine willingly feeling worse right at that point. But like in any good movie, there’s that climactic moment that forces the main character to change.
Choosing my hurt
I love watching my sons play basketball. For my younger one, there is no off season! He plays whenever he can, one year he played on 3 different teams. It’s great though, I love watching him excel. But going to games and taking him to practice became increasingly difficult.
Months before I was diagnosed, I had partially dislocated my shoulder but I didn’t know it. And it was like that for 10 days. It HURT, let’s be clear. I could hardly use it. But I could still move it a tiny bit thanks to my super stretchy ligaments, so I didn’t know I probably should have gone to the hospital! I finally got in to see my chiropractor. It’s normal to hear some slight noises during chiropractic adjustment. But when he put my shoulder back in, that loud pop made even him jump back. It had been “out” beyond anything a normal person would have experienced.
You would think once back in place I’d be fine after a few days rest. Not even close. I only got worse. After that, that shoulder was always popping out. I’d wake up having slept with it popped out. Those were bad mornings. It clicked in and out of place every time I got dressed or tried to put on a coat. I couldn’t carry my purse. This obnoxious EDS shoulder was deciding what I cooked for supper – whatever was the least amount of stirring or chopping! But that Disney movie moment was approaching. The decision to make the tough change came at one of my son’s basketball games.
It didn’t seem to matter what I did, use it, not use it, the pain and subluxations only escalated. It had been one of those bad mornings when I had woken up having slept on my shoulder being out most of the night. But it was the semi finals so I was going to the game no matter what. I was nauseous and fought to keep the level of pain I was in the whole time to myself. I figured if I was careful of my movements and got someone else to carry things for me, I’d make it.
Being the semi final, both teams were playing their hardest. A high scoring game with both teams playing great defence. There was lots of opportunity for cheering. Only I couldn’t. The first time I tried to clap, searing hot pain vibrated through both my arms. I thought I was going to puke all over the person in front of me. I tried to clasp my hands together in my lap to remember not to cheer. But how weird was that when our team scored? Me just sitting there like a statue. Soon I’d be engrossed in the game again, there was a basket, I’d forget and naturally clap. Then my son scored an awesome 3 pointer. Our whole bench roared in excitement. Except me. Tears stung my eyes. I couldn’t tell what hurt more, my shoulder or my heart for not cheering for my son. That was it. I had reached my limit with this. My mind raced forward thinking of all the things I was never going to do if something didn’t change. I was already getting my sons and husband to open or carry things for me. I wasn’t cooking favorite meals because it was too painful. If I ever became a grandma, would I even be able to hold that precious child if I can’t even carry my own purse? I remember hearing a quote once that said, “pain is something you need to use, not let it use you.” I had let it use me long enough. I chose to try the aloe. I was in pain every moment anyways. Why not see if after the temporary increase in pain, it would decrease?
A little sign my kids left for me one day. I have a lot to LIVE for!
I started very slow with the aloe. With MCAS making me react to the most benign of things, I wanted to make sure I wasn’t allergic. I just started with a teaspoon daily for about a week. Nothing happened, good or bad. So I went to the full 2oz dose that the other EDSers were taking.
Oh my goodness. My shoulders felt tighter and subluxed less almost immediately! I was pleasantly astonished! But my knees swelled up and started subluxing with every step. Fantastic. At least with my shoulder more stable I’d be able to manoeuvre a walker, I laughed darkly to myself a few times. If it wasn’t for the results in my shoulder I honestly would have quit. My knees were visibly going in and out of joint, not to mention my usually boney knees were massive with swelling. Every day for a month was mental gymnastics to get myself to take the dose. If it could help your shoulders that much Dorothy, it can help your knees that much, just HOLD ON!!! Use the pain, don’t let it use YOU!
After 6 weeks of “holding on” I woke up one day and realized I had gone from the bed to the bathroom and my knee only subluxed once. It’s only a few steps but still. That day, it acted fairly decent! I went from hundreds of subluxations in a day to only dozens. My daily mental gymnastics had paid off.
The next few weeks were pleasant surprises of most things being around 50% easier. If I had to reach for something on a top shelf for example, I’d usually shrink back in stabbing pain. My body would immediately and viciously remind me that was a no go. Then one day I instinctively reached and I retrieved the dish without the stabbing! I was on a path of being able to do more, stand a little longer, and of course cheer again. Some nights when I went over the day in my mind, silent tears of joy and triumph soaked my pillow. I had felt so incredibly useless over the last few years. Things were starting to change. I couldn’t do everything, but I could do more.
And “more” gives me hope to keep going and searching.
Wherever you are Deborah Cusack, thank you and God bless you for all your research.