While I can’t say I have been doing great, I have gotten some good news about my health that i want to share. I’ve also gotten some bad news, so I’ll share it all.
I saw my Neurologist a few weeks ago at Northwestern. He specializes in stroke and neurocritical care. He is a really great doctor and has agreed to take over my care for my vascular and neurological problems. This eases a lot of my stress, because for me, the less doctors involved, the better. He does want to do some more testing in the future. He thinks there could be a genetic factor going on that keeps causing all of my injuries. If I do have a genetic condition there is nothing more they can really do, as there wouldn’t be a cure, but we might be able to look at treatment options and preventative care from a different angle.
I saw a Cardiologist at Northwestern a few months ago also. I was diagnosed with tachycardia, a PFO (small hole in the heart) and a heart murmur. After wearing a monitor for a few days the doctor told me I am in no danger for my heart, and that I will just stay on my beta blocker to control my heart rate/ help with my migraines. My blood pressure is back to normal also!!!!
My pain is better.
It’s not good in any way, but it’s better.
When I started the pain management program, I was at a constant 8/10. My new constant is a 6/10. I still have days where I am at 9/10 and don’t leave my bed, but the days I am lower, I am able to do more.
I went for my follow-up at the AbilityLab (the pain program) and it didn’t go well. Not because my doctors are not amazing, but I was a big mess that day, and could barely talk through the tears.
I was 3 weeks late for my 4 week follow-up appointment, and I wasn’t even able to see all of my health care providers. I could barely move my arm that day, so doing my testing to see where I am at with strength didn’t seem like a great idea.
I’m not sure if I’m getting better or worse at this point. I didn’t really want to know that day. I go back in two weeks to check my actual progress. I saw my doc and psychologist and they helped get me back where I need to be. Staying positive. Keeping an open mind. Knowing it’s ok if I am getting worse, because my quality of life is getting better.
When I say getting worse, I mean my mobility and strength.
Those are my biggest issues right now.
With all the surgeries I have had, and all the stents and bypasses near my neck, and that darn ATV landing on my chest, there is a lot of damage that can’t be undone.
I still can’t sit comfortably for more than five minutes. I can’t stand for more than a few minutes. I barely use my computer because I can’t type most days (yay iPhone) , my thumbs are way better than my actual arms/hands. Some days I can barely talk.
My muscles are a mess, my bones are a mess, my vascular system is rebuilt, but I don’t look sick.
That’s the issue.
Most people cannot understand what they cannot see. The comments I get from family and friends sometimes are downright offensive.
If you wouldn’t say it to someone with a mobility aid (wheelchair, walker, etc.) please do not say it to me.
I don’t use a mobility aid because I am lucky enough right now not to need one. I might in the future though.
I walk as much as I can. I workout at much as I can. I’ve lost over 60 lbs in the last year. I have not been trying for the last 40 though. That’s scary. I have been force feeding myself and I gained 4lbs this week. When my pain gets so bad I can’t think, I also can’t eat. I will just throw up so I don’t try anymore. On my ‘good’ days, I still have no appetite, but I make myself eat. Soup, bread, fruit and vegetables have been my main foods. I have trouble chewing when my pain is bad too, so it’s just a lot of factors.
I’m getting there… it’s just a long journey to healing, and to accepting the things that will not heal.