Sunday, October 16, 2011

::Sigh:: (information heavy post)

I promise I am not going to give up on blogging. But I haven't posted in awhile, I know that. :(

So my most recent update (in regards to the last post): Probably not going to dress up for Halloween. Would love to(?) but since my hubby and I don't really have anywhere to go.... and we can't seem to decide what we'd want to dress up as... I'm skipping this year. I'm disappointed, but I've got other things to worry about.

On a side note: Costumes run RID-FREAKING-DICULOUSLY small!!!! Talk about a kick to the ego! I have tried on several costumes.... and besides the SuperGirl costume pictured below.... pretty much every one that I tried on... XL was TOO small. So ironically.... I go and lose over 100 pounds.... yet I'd still need to buy a plus-sized costume (which, in one outfit.... the XL was too small, but the 1x available in plus was too big.... go figure).

Anyway.... I want to add a TON of pictures as soon as I get a few minutes. I feel like I can never get a grasp on time.

And on a more serious note.... I am beginning to wonder if this is related to other issues I have been having.

To make a long story short, after I had my daughter, I didn't feel quite right. One of the most notable things I dealt with was an extremely flushed face. It was hot to the touch and it bothered me. Here's a pic of me when it was close to being at its worst (this was taken Dec. 11, 2010 - a month into my diet, but the face flushing had started before I ever started the diet). Not sure it looks as bad as it felt (and this is a HORRIBLE picture, makeup smearing and all lol) but it was very uncomfortable all of the time!

My doctor ordered blood work about a month after I had my daughter since I was complaining of these symptoms. Turns out my LIVER enzymes were elevated (AST & ALT levels). Strange, right? Especially strange considering my blood taken just days before I delivered showed my AST & ALT levels were completely normal.

So that was clue #1 that something was off. Doctor did some other tests, including tests for certain antibodies... and my "Smith" antibody came back high, as well as my cardiac C-reactive protein. GREAT. 

My doctor's first guess was lupus. Sjogrens was thrown around too. By this time I had started going to my diet doctor, and she thought it could just be some weird post-partum hormonal thing. My body was attacking itself. The antibodies showed that my immune system was attacking itself.

Anyway, the readers digest version (I'm trying here lol): After a while the face flushing wasn't *as* bad. Liver enzymes inexplicably returned to normal. I've been seeing a rheumatologist ever since the doc though I had lupus. Although I showed *some* markers for lupus, I was missing a lot of them, especially key ones, apparently (in terms of blood tests, etc). So she ordered more tests.

In the meantime.... this whole time I have been losing weight, I have been waiting to feel better physically. And I do... overall I feel great! But some of my lingering issues (that have been present since BEFORE I gained all the weight... and actually have been there for as far back as I can remember) never went away.

One thing that has plagued me since  I was a child is what I had once referred to as "growing pains." I would get these horrendous pains in my arms and legs. I suppose the pains were coming from joints? But the pain radiated to such a degree that I couldn't tell you exactly where the pain started from... just that the whole leg or arm would hurt. When I was little my parents chalked it up to growing pains. The ONLY - and I mean ONLY - thing that ever relieved it was ibuprofen, and sometimes tylenol. My parents tried everything before resorting to meds. I began to believe this wasn't just a "growing pains" issue when I was in my late teens/early 20's and still had them. No rhyme or reason to them really. At that point, I started looking for answers, and my doctor at the time said it sounds like fibromyalgia. But the only place I ever had the pains really was my arms and legs. Sometimes my hips, but very rarely.

So for  about 10 years, I thought I had fibromyalgia. Well it turns out it's not fibromyalgia.

My rheumatologist diagnosed me with rheumatoid arthritis.

I guess my rheumatoid factor numbers came back high, so she believes this is what I have.

The name can be misleading (at least, to me it was!) because rheumatoid arthritis doesn't just affect your joints. That's typically it's signature, so to speak, but it doesn't just affect your joints. It (as in, your own immune system) can attack your organs. Wonder-effing-ful!

So to make a long story short.... I am beginning to wonder if time flying the way it is - (flying by moreso for me than even my friends who also have 3+ kids and crazy busy lives) - could be something neurological. Something going on in my brain. Perhaps my immune system is beating up my brain. I'm not entirely off-the-wall for thinking this, and here's why:

My memory continues to decline. It has gone from the occasional embarrassing moment because I forget a detail here or there.... to me forgetting lots of details, forgetting important events and dates, forgetting a LOT. I cannot begin to tell you the AMOUNT of times I have been on the phone with a friend, telling them the same story as if I had never told them before, only for them to remind me that I have told them at LEAST 4-5 times before, each time forgetting about the previous times. More than 1 of my friends has flat out stated they are worried about me because my memory issues have gotten redonkulous. It goes beyond just repeated conversations, or forgotten memories of events (most especially short-term).... I also feel like I have lost my ability to speak without sounding like an idiot! I am constantly at a loss for words, for remembering certain words or forming sentences properly. I will use words in the wrong context or jumble them. It happens a LOT. And it keep happening more and more often. For someone who was/is a total grammar nazi... for someone who used to read the dictionary to expand my vocabulary... this has been upsetting to say the least.

If I don't write something down, it is forgotten. Sometimes even if it is written down it is STILL forgotten about. For instance, yesterday there was an open-house at my son's ABA school (my son J receives ABA therapy twice a week.) They "highly encouraged" all parents to come check out the new classroom, meet the new teachers, etc (basically we NEEDED to go there). Guess who forgot? And it was written down in my planner. Good going, mom. :(

It's been an ongoing joke that I am scatterbrained or have pre-alzheimers (not something to joke about, but it's been suggested lightly by friends/family). It's gotten to a point that none of this is funny anymore. The level of frustration I feel is so high I can't even put it into words.

The other possible-neurological thing that has been going on: My sense of taste and smell has changed in a very drastic way. I don't believe it was gradual. It started pretty suddenly, at least that's how I remember it. My husband and I had Applebees for dinner. It had been awhile since I had Applebees. We ordered the 2 for $20 meal deal.

Earlier that same day (in late July of this year), I remarked that there was an overwhelming "smoke" smell throughout the house. It is one of my most hated odors - I hate the smell of cigarette smoke something fierce. My parents are both heavy smokers so I remarked to my hubby: "Did my parents move in or something!? Where is that god awful smell coming from!?" He thought I was crazy. Then that night, having Applebees - it didn't taste right. I remarked that they must have changed their ingredients. Doug said "tastes the same to me."

I tried ignoring these changes. Figured maybe it was sinuses, or maybe it was something I had recently done or changed. Was it the new volumizing shampoo/conditioner I started using? Was it the multivitamin I started taking a few months prior?

Anyway the smell/taste thing is still a big issue. When I mentioned it to my rheumatologist, and asked if that could just be sjogrens related (because yay, I have that too along with rheumatoid arthritis) - she had a split second look of concern, then went back to doctor mode and said she didn't think the changes were sjogrens related - not the way I was describing them. She then said she wants me to see a neurologist, and when I call, tell them she's sending me over there (even though my insurance company doesn't require referrals to see specialists).

SO... I have a neurologist appointment on the 19th.

Scared. Just hoping that there isn't something even more serious than RA going on! :(

As far as treatments for the RA, the doc wants me to take methotrexate. This drug is extremely heavy duty. So much so, that it is essentially a toxic poison. I don't like having the choice of "pick your poison" - either let the RA do what it's going to do, or take the methotrexate and deal with the host of problems that represents.

I have decided that methotrexate simply isn't an option for me right now. It's not an option I am willing to take. I told the rheumatologist this. She said I could try plaquenil, which is usually something she prescribes in conjunction with methotrexate when methotrexate isn't enough.

When I see her in 2 weeks, I think I may go ahead and try the plaquenil, which is generally well tolerated and not many side effects. It is not as aggressive at treating the RA, but my thought is let's take the most conservative method possible and see how that goes.

So to sum up:
  •  It's been a hell of a few weeks
  • I have been diagnosed with an autoimmune disorder called Rheumatoid Arthritis
  • It could be attacking my brain, causing various symptoms
  • Appointments are upcoming.
There are probably a lot of lacking details, so feel free to ask me any questions if you have even read this much! Sorry there aren't more pictures - they usually help break up a post and make it more appealing to read.... at least for me, lol.