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.

Thursday, July 31, 2014

Next steps?

I've been to the rheumatologist. We're still waiting on test results, but the doc didn't think it would be likely we would find anything.

Nuerology appointment in November.

In the meantime, I'm feeling a bit fed up with seeking answers - again... and still without any hope for an effective treatment.  Funny thing. Even with conditions with no cure - they usually at least have some ideas of treatments to help manage symptoms. I can have the same symptoms - but because I'm undiagnosed - then I'm not eligible for the same treatments.

They did suggest getting a lump biopsied to see if we can figure out what the lumps are.  Not the end of the world if we do that. It's just that my issues are bigger than the lumps themselves.

sigh.

So, my current plan is to restart the MTHFR treatments... slowly and surely. See if I can figure out if things worsen or improve.

Thursday, July 24, 2014

Another health crash - trying to tough it out

About six weeks ago, my right bicep started cramping.... I had a superficial (very minor) blood clot in that arm after my gall bladder surgery a few years ago - which never went away. I figured I should double-check to see if the bump is still there and still the same size. It was. BUT about a quarter of an inch away was a second bump.

My first thought that struck me was that I might have developed a second blood clot. If I had thought it was a DVT - I would have gone straight to the ER. But it felt just like the other bump I had... which being a minor superficial blood clot and I could literally feel the lump right under my skin.... I decided to take some aspirin, use some warm compresses and take a wait and see approach.

WIthin three days, I suddenly had a couple more bumps under the skin on my left bicep. Hmmmm... if these really are blood clots, that would be a sign of something quite wrong. But, they are highly unlikely to be blood clots in two different arms spontaneously showing up. So, I called the doctor. A couple of trips to get ultrasounds and the US doc claims they are unlikely to be blood clots, nor cysts... nor anything that they can recognize as abnormal tissue.

Next step was dermatology. At this point I was up to 14 lumps - all in my upper arms. But now I'm getting pain in my legs, torso, neck, etc, even though the bumps are localized primarily in my arms.  Dermatologist went with angiolipomas... which are painful (angio)  benign lumps (lipomas). If I was lucky, they would hurt for about six to ten months, not respond to anything, or I could have surgery to remove them.  Per him, since there would have to be about eight incisions, he wanted me to go to a general surgeon for the surgery. Per the General Surgeon I saw next, they were NOT even remotely possibly angiolipomas and part of the reason the dermatologist didn't offer to do the surgery is that he wouldn't want to get blamed for operating and not resolving the problem.

Went back to my regular doctor and now we are waiting on rheumatology appointment. The lumps are showing up now in my arms, legs, trunk, and underarms. The pain though can appear anywhere. There's a general whole-body ache that preceeded finding bumps in each area as it spread, so did the bumps, only now it's whole body - the bumps aren't quite whole-body yet... close, but not lower legs, nothing in my feet or hands... sigh. But, even worse... there's a shooting pain that will hit in a variety of spots. It flares hard and fast and almost strong enough to cry out, within 20 minutes it tends to fade back to the aching. Suggestion has been made that this is nuerological pain. I don't know, I just know that it's hard to cope with it. None of the recommended pain killers have provided any relief.

In the meantime, I've learned the following.

1. The lumps don't stay. I can count 14 at one point, the next morning there might be 8, eight hours later there might be 24, the following morning 6. Sometimes they stay.... there's almost always about 6-10 lumps in my arms consistently... but if I mark them with permanent marker - some of them will be in the same place the next day, others will have gone, but new ones (or they moved) will appear a quarter inch or so away from the mark.

2. The more I try to do physically, the worst the pain gets. Even knitting (sob) triggers more pain in my arms.

3. The ONLY thing that seems to help is application of heat. - So I'm spending my days and nights in bed with a heating pad being moved to the next spot that has the worst pain... with a few breaks to take long baths (and I hate baths) but the heat application makes it easier for me to sleep.

The doctor did put me back on coumadin, although honestly it's highly unlikely that these are truly blood clots. 1) they didn't show up on US 2) they move/dissolve way too quickly 3) if they are truly moving - then I would have more serious issues with breathing by this point.

But blood thinners will at least protect me from my blood clotting disorder while I remain bedridden to deal.

I'm on medical leave from work right now, but all I can hope for is that the rheumatologist might have a treatment suggestion and/or my condition goes through another change and I can experience some remission. I find that it makes me feel very defeated.

I stopped ALL methylation treatments as well as temporarily stopping the thyroid treatments. I stopped adding a ton of salt to all my dishes. I've checked with the MTHFR specialist to see if there's anything obviously outstanding that might explain my new symptoms based on what I'm doing... but nothing came to mind. All the doctors I've spoken to, with the exception of the one who I no longer trust who suggested angiolipomas... have repeatedly told me that my symptoms are exceptionally uncommon and make no sense.

I question whether or not my 'ramping' up my methylation process after it having been in such bad shape my whole life has caused an influx of something I'm having a systematic reaction to. If so, backing off of the methylation support should allow my symptoms to improve (nothing yet, but not quite ready to give up on the experiement). If the symptoms do back off and restarting the process makes it worse - then I know to dig deeper into that process.

So, in the meantime, I'm mostly doing a wait and see approach.

Monday, June 16, 2014

Father's day

My stepfather and I have never been close. He had married an older woman who had three teenagers and a younger daughter. They took a little while to become a 'family', but we did. And even more so, when he had a son (my youngest brother) with her. But he wasn't quite ready to be 'dad' when I was little. Less so, once I became a teenage girl with authority issues. Even less ready to become a grandfather when my eldest was born.

We get along. We're just not 'close'.

Since my own birth father had died when I was quite young... I had been super close to him, but I never had that connection again with anyone after that. It was all about my mom when I was growing up.

And since my eldest son's father hasn't been a part of his life (well, ever), he never really experienced having a dad around either.

Admittedly, I was married for several years in the hopes of obtaining a father for my son. But come to find out he didn't really want to be a dad to my son. And it wasn't too much longer after I realized that before I realized that I didn't need him in my life after all.

And my other son's father and I were only dating when I conceived and we had split up before I'd known we'd conceived.

Well... father's day has always been a bit 'odd'. It doesn't quite fit our family. My youngest son usually gets to spend Father's day weekend with his dad... which at least gives me a little break. But, it's been hard to call it a family event or holiday.

I did start teasing my eldest son about father's day when he was a teenager. It's not like he had anyone in his life besides myself and my mother. And, I figured I deserved some due for being the one to toss a softball or kick the soccer ball with him. I was the one who took him to baseball games. I was the one who taught him to mow the lawn and grill out on the grill. I taught him how to hike, camp and fish- though I never could quite bring myself to clean them (catch & release works better when you aren't a big fish eater - lol). I was the one helping him with his cub scout activities.

He pretty much ignored all my attempts at getting some recognition on father's day... until he became a father himself.

Now, I get flowers and dinner for Mother's day. And father's day? Comes with a huge thank you and a conversation about how much he appreciates what I have done and continue to do to support him.

He's turning into a pretty great father on his own. And I think it's pretty cool that once a boy becomes a man and understands what it really takes to be a man? He realizes that some of that came from his mother... and that it is ok.


Sunday, June 08, 2014

Need to vent about doctors

I have a history of blood clots.

I have a genetic condition that makes me have a high risk of future clots.

I have had one PE and one superficial clot. A superficial clot is generally considered no worse than a bruise. It's minor, usually caused by iv's or injury or otherwise... and they are not usually considered dangerous, nor are they treated with any type of medication.

However, sometimes, if left untreated (about 10% of the time, they can lead to DVTs.

If I get a DVT, it will be considered my second clotting event and I'll be stuck on blood thinners the rest of my life.  (superficial clots don't count as a true clotting event).

My first superficial clot came along after surgery in the arm about an inch away from my iv site. It's pretty common to get them after an IV... and as it was I was being put on blood thinners for two weeks as a preventative treatment after surgery - so within three to four days, the clot started to feel better and to shrink. It shrunk down to about the size of a pea... and all was right in my world.

However, last Tuesday, my arm got sore again - in the same place as my previous superficial clot. A small patch of the area on my bicep was red, swollen and warm to the touch. When I poked and prodded I found a little pea sized lump... only it wasn't in the original location. Sure enough, when I poked some more, I found two pea sized lumps - the old one and a new one. Since I knew they were low risk and didn't necessitate immediate medical treatment - and that the treatment (warm compresses and aspirin) is low risk if I'm wrong... I just started the treatment on my own.

Two days later, I had some pain in my left upper arm... found another itty bitty lump. Hmmm.... that's not good. But I'd only just started taking the aspirin a day or so before... so I figured it might not have had a chance to take effect yet.

Third day... and the lumps in my right arm were both larger than they used to be. Which means that my old clot has gotten bigger as had the second, newer clot. They went from pea sized to marble sized.

I broke down and did something I didn't want to do - but I called the doctor to ask if they could see me. Only they wanted me to go straight to the emergency room. I got a little pissy and grumpy and stubborn. I didn't want to waste the time to go to the ER... I knew that these are not life threatening, in and of themselves... and that if I could get treatment (true blood thinners) that they wouldn't get any worse and therefor couldn't reach the point of being life threatening. So, I didn't go to the ER on Friday.

I went home and pouted instead.

Saturday morning I woke up and it was hard to feel the lumps in my right bicep because the whole area is much more inflamed. I think I need a new doctor, but on Satuday I realized that I wasn't going to get diagnosed and treated any time soon if I didn't go anywhere.

I can't find a new doctor over the weekend. And a walk in clinic that doesn't know me isn't going to do anything except send me to the emergency room ... sigh.

So, I broke down and went to the emergency room on Saturday. TOTAL WASTE OF TIME. They concurred that I do not have dvt's (deep vein thrombosis) and that my life is not in danger at this time. And they recommended I talk to my doctor. Which is all I wanted to do in the first place.

Grrrr.

The two lumps in my right arm are now around 2" long... the bump in my left arm is about the size of a marble... and now I have a new pea-sized lump in my lower left arm.

I may not be a doctor.

I may not be thoroughly familiar with everything about how the body works.

But I know a LOT more about my blood clotting disorder than a lot of doctors.

Basically, the body needs the clotting mechanism to deal with injuries. And when you are hurt or cut, you need blood clotting to stop the bleeding.

But sometimes, the trigger that initiates the blood clotting 'process' isn't obvious. And with my disorder, once it's turned on... the body has a hard time stopping it from building clots even where they aren't needed.

When you develop multiple superficial clots in different locations without any preceding injury, it's evidence that the clotting mechanism has been turned on.

I've taken aspirin, which is the recommended treatment... and it hasn't phased the process.

Per the studies I've read, aspirin is very effective in helping folks with heart conditions and with arterial clotting risk in preventing platelets from sticking together. Veinous clotting disorders, on the other hand... are created by fibrin sticking together.  Aspirin has not been successfully proven to be effective with veinous clotting disorders. I have a veinous clotting disorder.

And aspirin has not been an effective treatment.

This isn't rocket science. It only makes sense that unless I start taking medicine proven to be effective in preventing veinous clots from forming... it will only be a matter of time before I'll start having dvt's or another PE which would be life threatening.

I am fully aware that the ER did their job. They made sure that I'm not on my death bed. But now I've been laying in bed for two days and getting worse. I HATE the idea of waiting to get worse instead of attempting to do something to get a handle on my condition. While it wouldn't be in the ER doctor's job description... it would have taken ONE prescription of a drug that can't be abused to have put me into a safer situation. It would have taken thinking outside the box and connecting the dots that a person with a clotting condition actively building clots (no matter whether they form outside the deep veins or inside of them) is probably going to need treatment to stop the process.

SIGH. I am really sick and tired of trying to get common sense medical treatment and getting brushed off. It's my life they are putting at risk because they don't know enough to connect the dots and see where this is heading.