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.

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.

Thursday, August 14, 2014

New exercises in thrifting

I an hoping to buy a new home for my son and myself quite soon.

Going from a 2 bedroom 1000 sq ft apartment to a 3 bedroom, family room, living room townhome and around 1900 sq feet of living space means I will probably be a bit short of furniture.

So, I've started thrifting.

I've always loved Craigslist and it's my primary source. But after flipping through it a few days... I started wondering if there were other options.

I did searches with my location and freecycle or shopper in Yahoo groups and in Facebook. And started to have access to more used items.

Some of my recent buys seem good... some I already regret, but think I can fix.

1) small antique wooden desk - $40 (I probably spent too much) - I wish I had waited a bit and found one that was light wooden color instead of as dark as it is.  There's one drawer that sags a bit and needs a spot of wood on the underside to keep it in place properly AND a spot of glue on the top bit holding it to the frame. AND I probably need to refinish it as almost all my furniture is a light oak finish. (sigh)

2) 9 square cube shelving unit for $10. Needs a fresh coat of paint - and I'm thinking gray for my son's bedroom or white for a crafting space.

3) Small 2 drawer wooden filing cabinet - which is the right wood color and the perfect small size - exactly what I need and what I've been looking for for ages. And only $35

4) Two small ladder-type small shelving units - perfect for a's small bedroom - just needs a touch of paint on one leg and a spot of glue on a couple of shelves that were recently damaged. $10 for the pair. Trying to decide if I leave them black or if I'll redo in gray.

I've got two pieces of furniture I'd like to redo for a's bedroom... his current dresser I bought six years ago and still love. But it was damaged when I bought it and I still haven't fixed it (bad mom). A spot of wood filler on the top, a little sanding and a fresh coat of paint will make it perfect for his room.

AND I've got a small wooden computer desk. Simple lines and perfect for a's bedroom. But with a black & gray bed. Black and gray dresser. Black or gray shelves (TBD). He's going to need a black or gray desk... so the plan will be to sand and paint it.

SO yeah. Plans and plotting.... and more projects than I can probably manage. I'd try bribing 'A' to tackle them for me, but with the baby coming tomorrow - he's not going to have any time either.

Sunday, August 10, 2014

Debating allowing a small amount of gluten back into my diet

I never truly believed I was gluten intolerant. After my third doctor suggested I consider going gluten free... I started trying (and failing) a gluten-free diet.  After I had my teeth pulled, I ended up going about six weeks on a liquid diet and it was fairly easy after that to try to go gluten free.

I had to test it though. I went almost six weeks with 0 gluten. And then I ate a King's Hawaiian Roll (because, lord did I miss them). And within 20 minutes I had severe cramping in my always-painful left calf.

... hmmmm....

Another six weeks gluten free, and I had to try it again.

Within 20 minutes I was asking myself what I did to my leg because it was hurting soooo bad... and I remembered, I had tried another roll but had forgotten about it.

.... sigh.....

I guess I need to be gluten free, right?

Or not?

I've been regularly doing epsom salt baths because they are the ONLY THING that consistently helps with the chronic pain in my calf.

The day before yesterday I snuck one of a's snacks - a graham cracker with chocolate and marshmallow creme filling. YUM... and when I was taking my bath later that night I thought to myself that I didn't remember any additional cramping earlier.

So, being out of all my gluten-free snacks - yesterday - I gave into temptation and ate two more graham cracker snacks. No bath last night, mildly cramped today... a little more than yesterday - but not severe cramping.

... hmmmm....

I got some groceries and couldn't resist an old favorite frozen dinner meal from Marie Calendar's - with pasta.... and yet, no new cramping.

I think that this means that if I use moderation AND keep doing my epsom salt baths - that I might be able to add a little gluten back into my unbelievably restrictive diet.   ... Oh, gosh, I hope so!

Friday, August 01, 2014

Back on coumadin

Ok. I do get it.

Coumadin (or brand name warfarin) that I'm on is hard to 'manage' the dosage. The dose for one person has NOTHING to do with the dose needed for another person. There are a million and one things that can impact the dosage that works for an individual... and none of it can be pre-measured (unlike something based on weight or body mass). The only way to know if the dosage is right is to measure the impacts on the time it takes for the blood to clot.

But seriously.

I've been on the medicine for four weeks.

Week one - they started me off low. After a week they tested me. What were my results? They were low.

Week two - they bumped the dosage up. Not by a little. By a lot.

Test me again and what happens? The results were high. Way high. Dangerously high. So what do they do? Instead of telling me to take less. I have to stop taking it altogether and get tested again before restarting.

What happens? I'm too low. (by the way, this is knicknamed the blood thinner roller coaster).

Week three - what do they want me to do? Instead of having me take a dose between the too low dose and the too high does... they have me take even more (? wtf ?)

What happens? I'm way too high... dangerously too high. Stop everything don't take anything... and then come back in.

I'm now too low (see the roller coaster effect?).

Week four - let's start over again, lets' go back to what is now the medium dose.

Now I'm too high again (go figure). Have to stop again. (seriously?)

Maybe the next time we start up again, we might chose to take LESS than the medium dose, but more than the too low dose.

I totally get that this dosage thing is trial and error. I do. But I'm getting blood drawn twice a week right now to measure all of this and it's getting a little silly to keep repeating the EXACT same steps every week. We're never going to get a good dosage at the rate we're going.