Saturday, August 23, 2014

On the road to remission

I'm back off of coumadin. Now I have no idea why I was on it if it wasn't because the surgeon had convinced my regular doctor that I should be on it for life.  I think they were just playing cover their you-know-whats-its. But it's a pain being on it, so I am not fighting them to keep me on it.

I'm still getting lumps all over my body, my arms and legs and torso... they come, sometimes they go... and they hurt. But the fact that they do sometimes go... well, that means that they shouldn't be anything cancer-related. And now that the worst of the pain is backing off and the pain I'm left with is mild enough... I'm going to be taking a wait and see approach with them.

I'm able to be active for a few hours every day now (whereas 10 minutes sitting in a chair was too much for me only a month ago). Still not 100%. BUT SO MUCH BETTER THAN BEFORE.

I'm going to try to go back to work (well, work from home) on Monday and see how it goes. My doc would prefer half days. But insurance doesn't want to work that way - either I'm too ill to work altogether or I'm well enough to go to work. Thankfully I can work from home so we'll do that for a few weeks and if I'm still in recovery mode, we'll start trying to do some time in the office.

The doctor finally did come back with an unofficial diagnosis - so I can put a label to things. He truly believes it's Chronic Fatigue Syndrome (ME/CFS). Only putting that in the paperwork can really screw me over with the insurance company and future doctors. It's a seriously misunderstood and underdiagnosed condition. And there are far too many doctors who either believe it doesn't exist OR who treat it like it's all in your head. Millions of people are getting poorly treated who have this. Millions of dollars in research have been fraudulently taken and applied to other conditions - which means that they still don't really know how to prove it exists. Unfortunately, until research is available - it can continue to be dismissed by doctors and left untreated.

BUT, the good news is that my doctor did FINALLY (it's been over 9 years) agree to start helping me manage my symptoms. I've started muscle relaxants to see if that will help with the lumps and pain from the lumps (in case it's just knotted up muscles - I don't think it is - but I'm tired of not trying anything because we don't know what they are). And shortly I'll be starting some potassium supplements for my low potassium levels which I am sure is a result of my long-term diahhrea.

After that, I'll start restarting my other supplements that I stopped because I couldn't be sure they didn't cause some of the issues.

I'm also going to start tracking my symptoms and supplement changes again in a spreadsheet... it's kind of a pain to do it... but I miss things if I don't try.

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And in the meantime, I'm back to get yet another diagnostic mammogram next week. Boy am I sick and tired of getting lumps in my breasts. They always end up being cysts (thank goodness). And I'm sure the four new lumps are just that, yet again. But it's better safe than sorry to check. It just gets really old (and expensive). As more often than not the mammo is followed by an u/s... and between the two it tends to run around $1k in expenses. I guess the good news is that I've hit the high deductible limit so I'll only have to pay around 20%. But geez... it would be nice to go two full years without going through this.

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