what a crazy ride
I don’t know what to say. My mind is finally present enough for me to post, but boy howdy, what do I say?
I have been on a roller coaster for the past several days and while it seems the ride is slowing down, I am definitely still on it.
My Prolozone injections went really well on Tuesday. There was less pain than ever before and I was able to get off the table and actually help Kat get me dressed. I walked, quite normally, out to the front desk with a smile on my face, which is a completely foreign occurance. Usually I am in so much pain that I am holding on to someone and inching gingerly along and I am doing anything but smiling. I started to pay my bill and Kat says I put my head down and started looking really strange. They immediately called Kim, my nurse, and she came rushing to my side. I could hear her talking to me about opening my mouth, but I couldn’t open my eyes or respond in any way to her. Then I collapsed to the floor. Kat and Kim caught me and fixed my legs so my hip joint wasn’t all wonky. They tell me I was out for quite a while and people were monitoring my blood pressure, pulse, and other vitals. I finally came to and was pretty shocked to be on the floor surrounded by people.
Then I passed out again.
And again.
And again.
A long while later I was able to be lifted into a wheelchair and taken to an exam room. After resting for about an hour I was able to walk out of the office, get in the van, and start heading home. I was doing really well. I was able to talk and gesticulate and think. When I got home, Kat situated me on the couch with my ice packs and I was able to say hello to my children and tell the girls to make dinner. My hip was sore, but I was doing better than I ever had done before after injections.
The girls left for mutual and then the trouble started all over again, except this time there was a new symptom, shaking. My whole body would start shaking and then everything would go limp and I would pass out. This happened over and over and over all night long.
The next day I felt really well. My friend Jen came over to get my children registered for their iFamily classes and to take care of me. I had about 1.5 good hours where I was able to communicate, then I got up to the bathroom and passed out. As I laid on the floor with Jen, the shaking episodes started again and didn’t stop. Around this time we determined they were really seizures. Poor Jen, she had this seizing, unconscious woman on her hands and nothing she could do to fix it.
When Jen and Blythe got me back in bed we were able to make a plan to get a massive infusion of iron, magnesium, potassium, B-vitamins and a gob of other yummy nutrients. Jen made some phone calls, got it all worked out and then I rested and passed out and rested and passed out. When it was time to go, I hobbled with Jen out to the front room and was feeling super proud of myself. Then I crashed to the floor again and seized and passed out. Eric and Jess walked in right then and Eric scooped me up in his manly arms and carried me out to the car like a little baby.
On the way to the doctor I had many more passing out episodes, but somehow they got me in the office and on the exam table. I had another seizure right after we arrived and I was scared to death they were going to give up on me all together and send me across the street to the emergency room. I am not a huge fan of modern medicine and REALLY not a fan of emergency room care unless you are bleeding profusely or your heart is stopped.
The doctor came in and I fell in love with him. He was funny, personable, knowledgeable, and not freaked out by the seizures or passing out. He listened to my little voice tell him the whole story, checked out my body, declared I have Ehlers Danlos syndrome (more on that later, but here is some reading you can do now that basically sums up my entire life) which I have long suspected might be at the root of my problems.
He figured out the cocktail for my IV and started it right up. Let me tell you, my needle phobia is gone. I didn’t freak out at all about the IV. In my pre-injection life, I would have gone into a full-blown freak out over an IV needle, now it was not a deal in the slightest.
Then I laid there and let the vitamins and minerals drip into my vein. About half-way through (or sooner? What say ye Jess and Jen?) I stopped having seizures and passing out episodes. Jen was able to feed me and I was feeling much better. On the drive home I was able to talk and I called my mom and talked to her for the first time since the whole situation began. She was quite relieved to hear my voice and I was thrilled to be functioning enough to talk on the phone. The whole way home I did really well. I was able to talk and understand everything my friends were saying.
When we got home I started to get out of the car and lost all the color in my face so they got me back in and let me rest while we waited for Richard to get home and get me in the house. Fifteen minutes later he arrived and commented on how good I looked. As I got out of the car for the second time I immediately passed out and collapsed into the snow. They tell me it took five of them to carry me in the house and get me into bed. Then I had another seizure and passed out again. I don’t think I had anymore seizures after that, but I did pass out a few times that night.
Thursday morning I felt totally different. SO MUCH BETTER. I was able to walk to the bathroom by myself with Richard right next to me and after much pleading he let me take a bath while he knelt right by me. I was able to stay coherent for pretty much the whole day and the best part of all is I didn’t shake OR pass out. BANNER DAY!
Friday I continued to improve and didn’t have any more episodes although I still feel really weak whenever I have to get up to use the bathroom and it takes me awhile to recover from the exertion of walking the fifteen or so steps. Friends have been here around the clock to babysit me and walk me to the bathroom, give me all my supplements, and be all around super heroes. I have no idea how we would have survived the past many days without my amazing friends. Not only have I been given top-notch care, my children have been taken care of, meals brought in, yummy treats dropped off, and piles of love have been poured out on all of us.
It looks like I am severely depleted in iron and magnesium so we are doing everything we can to raise those levels. It seems to be working as I am no longer collapsing to the floor on a regular basis. I will get another IV infusion in a few days and am looking forward to improving even more.
In the meantime I keep swinging from being completely full of gratitude for all the amazing events of this week and really of my whole life, to falling apart and letting the fear in and getting discouraged under the weight of it all.
What a journey. Thank you to everyone who has prayed, loved, served, caught, cried, cooked, or cleaned for me this week. You are all amazing.
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
Tracy, you had a couple of shaking fits/seizures in the lobby. I don’t expect you to remember them, you were trying to catch your head and pull it back to your body. I am so so so glad that things are improving and you are finding answers. I love you to the moon and back and am so proud of you for accepting help!
Tracy, is there a test for Ehlers Danlos syndrome or is diagnosed on symptoms? I am sorry you have had these issues. I hope having a diagnosis helps in the long run.
You have been through the wringer. I pray for you that you have relief! Hugs!!
The wringer! Ain’t that the truth. Prayers are being accepted here twenty-four hours a day.
Love you Mindy!
Oh sweets, I’m so very sorry for the trouble. I hope things improve fast!
Tracy, my dad had Ehler’s Danlos, he was in his 30s when it got diagnosed and it was such a relief to know what caused all of his body’s wonkiness, although they mostly treat it by treating the symptoms. It would certainly explain how you injured so easily and why it is having such a hard time healing.
Have you considered going to the acupuncturist to see if she can help you get the seizures stopped? I’ve heard of that helping people with seizure disorders, so I would think in a case like yours where they are sudden onset and temporary, they might be a huge help, along with all the vitamins and minerals.
Oh Charlene! Tell me more! What type did he have?
He was never formally diagnosed with a specific type and the types used to be different, but I’m pretty sure he’d fall under what they now call Classical. Velvety stretchy skin that tears easily, hypermobility and hyperextensibility in the joints and tendons. His case would probably have been considered moderate for that type, although that type is not nearly as severe as some of the others. They used to say that it would remain at the same level when passed down, but I see now that they say it can get worse each generation, which would be more in line with our experience. Once he was diagnosed we were able to see that it was likely that my grandfather had a really mild case.
Along with the skin one of the ways it can be easily seen is the shape of the knees and elbows, so it’s not surprising that looking at your joints and skin the doctor would be able to diagnose it. Are you double jointed? Do you have the easy tearing skin?
Tell me more! How did it effect his life? I don’t think my skin tears easily, but I have had multiple scars rip open repeatedly. Also, my labia tear frequently. I don’t know anything about my knee and elbow shape…have you ever thought they look odd?
It’s most noticeable in the knee and it’s very subtle unless you are specifically looking for it you wouldn’t notice (I’ve never seen your knees nor noticed if they have the Ehler’s shape). If I remember right the upper part of the knee overhangs the lower when the leg is straight (especially when it is weight baring) rather than it being straight.
As far as effect on life it was pretty minimal as an adult. He spent a lot of time in the emergency room as a child because everytime he fell he needed stitches. What would have been a skinned knee on most kids was a huge tear on him. As an adult he had issues with his eyes because the ligaments that help them focus in place were weak and so he would end up with a wandering eye and thus double vision. At different times it happened in different eyes. He was able to get it fixed, and that was actually when he found out he had Ehlers. It lasted a little while and then they had to fix it again (he would have been early 30s during that time), but then it lasted until he was late 40s and I noticed one was starting to wander just ever so slightly.
He had more of a tendency to get injuries in his ankles and legs than a lot of people and developed arthritis as he hit his late 40s, probably a little worse than most people, but not nearly as bad as many people do, so it’s hard to say how much of that was the ehlers and how much was just his genetic make up.
My mom had several miscarriages and my parents both believed very strongly that it was because the babies had Ehlers and it was significant enough that it caused a problem in the pregnancy, but there is no way to know that for sure. It can cause issues during pregnancy though. It can cause problems during pregnancy and an increased risk for miscarriage though, especially if both the mother and child have it, so if you don’t know what has caused your miscarriages, that might play a part.
I’m not sure what else to tell you :) In our family it was just one of those mystery things for a long time. Everyone knew there was something wrong with my dad but no one knew what. His mother used to say she was lucky she had him when she did because now they’d think he was abused he was in the ER so much. His was severe enough, especially in the skin, to make it obvious to anyone who knew him well that there was a problem, but no one who just saw him would have guessed. After my dad it became routine that one of the first things done to a new baby was to feel their skin and see if it felt soft and velvety. My nana (his mom) always said that as a baby he had the softest skin she’d ever seen.
I once saw a video of a guy with it who was a master contortionist because he was so bendable :)
Hmmm, I had lazy eye as a small child and had the ginormous patch thing and glasses to fix it. I don’t think my knees look abnormal, but they do have folds of skin on them. Now I will start looking at other people’s knees!
I mentioned your Ehlers to my mom, she was wondering if your skin heals faster than most people when a wound is held together?
I have no idea if it heals faster or slower than others. I only know what is normal for me and, of course, I have extrapolated that out to the world as what IS normal. I do have a scar on my knee from skinning it and it reopened over and over and over throughout my childhood.
My dad didn’t have so much of a problem with healed scars reopening once they’d healed but they had to tape him up carefully to hold the skin together until it had completely healed or else it would re-rip. He would heal faster than most people though, but I don’t know if that’s part of the Ehler’s or just him. That’s the thing there are so few people who have it that it’s hard to know what is “normal” for Ehlers.
Oh, Tracy! My love and hugs are being sent your way. I wish I had something wise or useful to say.
I love you!
Ugh, what a saga. I hope you’re able to heal up quickly.
I was going to suggest a supplement called Blood Builder that a friend and midwife of mine swears by, but I’m betting your IV stuff is quite a bit stronger to get the job done. :)
I am taking a gob of stuff, but am always open to learning more. What company makes Blood Builder?