Sunday, October 21, 2018

That hole opened up again

First of all, BIG shout out to my loving husband for buying me a mega-light laptop computer so I can continue writing without it hurting my leg! I am now the new owner of an Asus VivoBook S14.
Yay Robert! Thanks SO much!

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Having already mentioned leg pain...lets launch right into that.

The bone scan and blood tests were all clear, no Osteomyelitis, thank the Good Lord. Because that disease is Very Bad News. I am entirely grateful it's not that.

But what is it?

My left thigh bone (femur) and hip are *killing me*. Oddly enough I can keep working out though. I can do my 5km on the exercise bike, lift weights with upper and lower body machines, and swim. But the swimming the other day left me barely able to walk...not from pain as much as weakness. I've been very weak of late, and I don't understand what is happening. It's the bones themselves that hurt, not the muscles.

My right hip joint is going, too. It hurts while swimming even more than the left sometimes. They've both had their share of surgeries, and have no cartilage, and will both need replacing at some point. I'm not sure which one is more desperate, although day-to-day my left one is hurting more. My femur- it's so crazy- but the femur bone is so painful.

In other news, that hole that took four months last year to close up? The one on my skin graft that kept oozing stuff constantly? Yeah, that's open again, and oozing sticky stuff. You can imagine how excited I am about *that*. Last year it took four months of draining, was completely antibiotic resistant, and only closed up when I used Manuka honey on it.

My infectious disease doctor swabbed it a few days ago, we'll see what bug it is, but I don't think it matters so much. Last year it was totally antibiotic resistant.

I am reticent to use the honey now again, though. Why, you ask? Because last time, one week, to the day, after that hole closed up after using the honey on it (took two weeks of treatment with the honey), one week later was when my belly pain started. I see it as connected. I somehow feel that whatever infection there was dripping out of that hole, it got internalized and inflamed possibly my mesh/clips or whatever else (not seen on CT scan), and maybe it needed that outlet of the little hole? I don't know. I haven't used the honey on it yet, I am traumatized by what happened last year, and don't want a repeat. I don't even know who's opinion to ask about that because it's not empirical data, like 1+1=2. It's just my gut feelings and fears.

So this week I have lined up a visit with my orthopedic oncologist. They are in Ichilov hospital (same place I went a week ago and met that pain doctor). They deal with my left hip/thigh, with the PVNS issues. It's my next stop on this journey to see what is wrong with my leg. It could be that the PVNS tumors have returned. This pain could be from that. PVNS does have a 50% return rate, *but* usually only within the first five years. I had the disease in 2008, and had the tumors surgically removed, and have had no recurrence, so my probability goes way down after that. But not impossible. Just this past year's visit- last June, they changed me from twice-yearly MRI's to once yearly. But I now need another one to rule it out. I am in so much thigh pain, this is the bottom of the totem pole to rule out, because I have a history of it.

I have to do so many MRI's in the coming months, I think I'll likely be sticking to the refrigerator by the end of them. The pain doctor ordered a bunch, the NY surgeon ordered one that I still haven't had done, but do finally have scheduled, and now I'm sure my orthopedic oncologist will be ordering one. I really hate having to fight for close dates for the tests, and then to have the insurance give me a payment voucher for wherever I am having it done. It's a whole process that often takes many calls and waiting periods. And faxes, yes faxes! In 2018 in Israel, we are still faxing, believe it or not.

I need answers though. I have more pain than answers. The abdominal pain is still for the most part behaving itself, thank G-d, but what would happen if I used the Manuka honey and closed up the skin graft hole again? I shudder to think. For now I'm not doing anything. Just swabbing the gook out of the skin graft hole periodically throughout the day.

The fact that I can still work out in the gym is good, but weird, right? Let's pray that stays that way.

OK, on to a new week, and with G-d's help I will be able to give my kids what they need! It hasn't been easy to do that...giving them what they need. Another of my children has now asked for counseling, and I'm working on getting that set up for them. It hurts my heart to see how hard life can be for them, and I do the best I can with the situations.

The migraine situation is a little better since I'm off gluten (Celiac), but I still get them, just not as strong as they used to be. I haven't needed steroids for a migraine at the hospital in a long time. Now when I get them (still once or twice a week), I can take a select handful of pills, smoke some Cannabis, and it goes away by morning usually. But often the next day I am tired...spent...from dealing with the migraine and sleeping problems from it.
And the Cannabis doesn't really take away the leg pain, which intensifies at night. I use Percocet semi-frequently for that.

I PRAY I get an answer about what the heck is up with my leg...it's just so far from normal. There is something hugely wrong in there. And is it connected to the hole in the graft (same leg, inches away) oozing stuff again? More questions than answers.

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