Long Overdue Update

I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well.

Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping.

She also is still in two ankle braces due to ankle instability. We had to stop physical therapy a few months ago because she ran out of visits, and insurance said "she does not show enough improvement" to allow her additional visits. I want to scream at them that how can you say that about a 9 year old, but I haven't... yet! Anyway, PT at home is not anything close to the same as PT at the Dr...

This week she started having problems with her right hip. Both times she insisted on going to school. I don't know that letting her was the right thing to do, but she has missed a full 15 days so far and hates missing any school. We have an IEP meeting coming up soon and I suppose this is something to address. She will be starting back to physical therapy right after Christmas. That was the soonest they could get her in for a new evaluation. At that point we'll find out how often to treat her, but what stinks is that our insurance reduced approved visits down to 20 this year (from 24 last year). Which unfortunately means we have to take that into account as to how to treat her, instead of doing what the Dr. says which is constant treatment. (she also still has posture issues, and ankle problems)

On top of that, we're not even through two full quarters of school. I am feeling guilt because she is missing so much and I also am missing a lot of work. (I work at a different school) I love my job, but I feel bad for the kids I work with because I've missed a lot, and I feel bad for Bug because there are times that I would have insisted that she stay home longer if I was more available. But I can't stop living for this, and neither can she. I just wish I knew if this was a rough patch or if we are going to continue along this way. With both the EDS and migraines they say she will likely get worse during puberty. Hopefully we can hold off on that as long as possible!

In addition, I spent two months in physical therapy after seeing the orthopedist (same one as Bug) for my own ankle and knee pain. As it turns out I have OA in both knees, Achilles tendinitis, a heel spur, five bone spurs in one knee, three bone spurs in the other knee, plus most of the cartilage gone in that knee. I knew I had a lot of pain, and a high pain tolerance, but it wasn't until taking 1000 mg of Tylenol a day plus two alieve and getting ultrasounds for pain that I realized how much pain and how much it was effecting me. WOW. I was told by the orthopedist to come see him again when I need him. I was also sent along to cardiology and genetics. Its been long suspected that I passed the EDS on to my daughter, and with the OA and severe spurring at 33 it's time to find out. I also have been having issues with going from kneeling or squatting to standing with getting really dizzy like I'm going to pass out. He wants me checked for POTS. So - I guess maybe I'll start getting some answers soon too.

So like I said, it's not a good thing I haven't written. At the same time, I felt that I owed some kind of update to let you all know Bug and I are still around, I just haven't felt like writing about it lately.

I hope you all have a wonderful holiday!


Gumby / Mommy Zebra said...

Sorry to hear you guys have hit a rough patch. Please know you guys are in our thoughts!! Bug is such a hard worker, I'm very impressed by her determination. Best Wishes for the Holidays and A Happy New Year.


Victoria said...

Hope you are both feeling better soon. I remember the days of missing school due to migraines and pain and wouldn't wish it on another. Thinking of you both.

elise said...

Hi B,

I'm thinking of you and hope you are able to find some kind of balance for a while amongst the chaos. At least there is winter break from school? You are such an amazing woman and I always wish you strength.

I'm glad to hear that you are working for your own health as well. Yes, that is a LOT of pain med and a very high tolerance, but having a little one in pain to take care of can set our own pain on the back burner, eh? I've always said that I just gotta get through "it" somehow. Pain is disabling so getting it under control will hopefully help you do what you need/want to do.

Be good to yourself and hang in there. Hugs to Bug and her mom.

Rachelle said...

Hi! I just recently was diagnosed with EDS and I have an appt with a geneticist coming up. But I went to a cardiologist and had a 3D echo done and they found a hole in the ventricular septum and possibly the atrial one. But they had to look really hard and specifically for that so when you go make sure they check for it. Maybe mention something about how people with EDS have a higher chance for Ventricular and Atrial Septal Defect than most people. =) Just wanted to give you a heads up! It's nice to know I'm not alone out there.