Pretty and sick

Once in a while, my tired, Mommy/fibro brain allows a shaft of light inside my head long enough for me to form a few coherent and relevant thoughts. Spell-check helps too. I just read this article about feeling beautiful when you live with an autoimmune disease. Personally I have gone many days without a shower, without brushing my hair, without dressing in proper clothes, let alone not leaving the house. It's hard to have the energy to care about your looks. So I appreciated this article on that level alone.

But then I read through the comments and was surprised to see how many people bitched and griped, saying the article is superficial. Simply putting on lipstick doesn't transform your whole outlook or how you physically feel. Putting on a cute outfit doesn't mean diddly shit when you can't get out of bed, or take a shower, as I find myself going without on many occasions. I get that, I do. I go through waves of anger, acceptance, sloth and defiance. But I have to say that on days when I can't primp myself a little, putting on a little of my favorite perfume makes a difference in how I feel about myself in that moment. It's not perfect, but sometimes it's enough.

However, I do agree a lot of these articles make it sound like the deep psychological issues that accompany physical pain and limitations are easy to fix with just a quick swipe of lipstick or a snazzy sweater. Patients like us aren't looking to be coddled or pitied, but we don't want to be condescended either. Shit happens. My new normal is to always have pain or discomfort on any given day. Hell, I feel like shit at least a little bit all the time, so I didn't even realize I was running a fever from an infection this week. I just figured it was the changes from the rainy weather that so often wreak havoc on joints and sinuses. That's life. We either learn to make the efforts to look nice or we accept that yoga pants and tshirts are good enough for the day. Do your best, that's all you can do.

Tschus.

Sinus-palooza

The struggle continues. Maybe I am so focused on weight loss because I can't control any of the other things going on with my body. It's more challenging to keep up with little Miss Hyperdrive these days. The kid is crafty. Sometimes she will give me a little look, a sly grin...then launches off like a crazy, baby torpedo. I've noticed my body is trying to adapt to the new physical demands of parenthood. My biceps are the biggest I've ever seen them. But a few things are not 100%, like my knees. Oh wow, I tried standing up from a crouching position while holding EK today and I couldn't do it. It hurt so much! And she's the age now where she wants to be held; asking with her big, baby browns and her little hands, pulling on my pants. And twice now, I've blacked out momentarily when standing up too fast, once holding EK. We were about to fall over when my head cleared. Does any of this worry me? Hell yes it does. But what the hell can I do about it? I've told doctors about these things and they never seem concerned. If it doesn't show up on an xray or blood test, they don't seem to think there is a real problem. All in her head, they may say to themselves. When your medical audience is apathetic, you eventually assume the same attitude. Also known as "FUCK IT."

So I've had blood coming out of my nose whenever I try to blow it. This has been going on for about two weeks. I'm always congested but it's been worse lately and now with the constant bleeding from my head, my nasal passages are swollen and painful to touch. I've let this go because I figured I'd be told it's just allergies and I'd go home feeling like an idiot for rushing to the clinic to head off an infection. So now the nurse tells me over the phone I better come in because it's probably an infection. No shit? How about you save me the trip by looking at my chart and seeing I've been in twice this year for sinus issues. Then kindly call in a prescription for a Zpack. Nope, got to go to the walk-in clinic. No appointment for you! You go to the walk-in clinic, now! So I'm getting my happy ass up early in the AM to hopefully get in first at the fucking walk-in clinic. Yes, because people with a shitty immune system love to sit in a clinic's waiting room for an hour and a half. Sorry, I am just frustrated because I'll have to reschedule my neurology appointment for the fifth time. Can you tell I hate walk-in clinics?

Thanks for letting me vent. I think I hear a shot of Nyquil calling my name. And maybe a couple of tampons for my nose. Have a good'un. Tschus.

Lesson learned

Don't post anything deeply personal on Facebook. (And let me just preface this by saying yes, I understand the irony of revealing my inner demons on this blog. But I'm counting on the fact that not too many of you read this. Haha.)

Yesterday I posted, and later deleted, a comment about how I have started applying for disability benefits. Wow, talk about begging to be judged! Silly me, I thought people had been paying attention to the last 4 years worth of posts about endometriosis, autoimmune disease, chronic pain, surgeries, pain pills, physical therapy, etc. I believe that people in general use Facebook to gravitate towards the drama. It's like they zero in on the posts that will make them GASP! and make snap judgments about others. At the very least, that is the only content that they choose to remember.

I had some people post their questions and opinions about the process. In response to a question, I had posted that education is taken into consideration because the more you have, the government feels that you are more likely to be retrained for a different occupation. Therefore my master's degree level of learning could make it harder for me to be approved for benefits. Then again, my health history may eventually win out on that tid bit of information, but this thread was merely conversational and informational.

A well intentioned commenter then posted, asking hadn't I considered or researched ways to be retrained? Surely I would rather be able to do SOMETHING? It would make me feel so much better if I did something.

No. No I just decided one day that I hated my profession (I profession I dedicated myself to since my first museum job at 17) and rather then switch careers, I'd rather just pretend to be sick all the time, waste thousands of dollars on doctors (who I have all fooled with my blood tests, symptoms and x-rays) and then sit on my ass all day feeling sorry for myself while collecting a check from the government. That is SO much easier then changing jobs. And it is so easy to apply for benefits. Why, you just fill out a quick form and BAM! Instant money! Yeah, that's how it works. You don't have to subject every facet of your life to government scrutiny, going through several denials only to get a trial about two years from your filing date.

Sorry for the anger and sarcasm. I have been trying to figure out how to feel better since at least 2006. I mean, aggressively so. I have been going to doctors constantly, I have received diagnoses, and I am trying to find combinations of treatment to help myself. I spent two years at my last job working a modified schedule, removing myself from the really intense physical labor that we sometimes experienced when putting up and taking down exhibits and moving collections. And guess what? Sitting at a desk was painful for me too. I had intense pain in my muscles, from my neck to my rear end. I tried to make my work station more ergonomic, to lessen stress on myself. Nothing worked. I got up and moved every so often, which helped but it didn't stop the fact that I had about two days of 8 hour work and by the third day I could not get out of bed.

Here is another way to look at: I have multiple, chronic conditions. It's akin to a forest fire. A small fire starts, it gathers force and you have to fight it. You put all your resources into smothering the fire and trying to prevent it from coming back. By the time it's under control, you realize that two more small flames have started in other parts of your forest. But one of them is near a housing development so you race over to that one and work on putting that flame out first. Halfway through this new battle, you look over at the concurrent cluster-fuck of fire on the other side of the forest and realize that one is way out of control now so you give up on the yuppie housing complex and let it just go to shit. Now you've run over to the other fire and work to put that out, looking up occasionally to see the other two fires now raging out of control. And this is how life is. Constantly trying to put down a flare only to find that another one, or two, has erupted.

So tell me, what the fuck should I retrain to do? Don't answer that. Because chances are, I've thought of it. I've tried it. I've researched into it. I hope that one day, I can experience less pain, a lot more energy and I dunno, go back to work at least part time. Or feel confident that I am healthy enough to start a family and be able to give time, love and energy to a child. Wouldn't that be swell? As opposed to getting "free" money from the government, at 1/3 of my former salary, because that is such a better alternative.

However, since the disability process can take two years, because they will undoubtedly deny me at the first two levels of application and because I can't work a regular schedule, I need to start this application now. I need to at least try to find a way to bring in extra money to help us afford all my medications and medical appointments. I need to plan for the worst case scenario, which is that I won't return to work.

So my life lesson this week is to not put anything as serious and personal as this on FB. Unless I want ignorant comments and then be put in the position to tell someone to fuck off or to sit there and defend myself. I'll save this journey for my blog, where I can type out everything I'm experiencing and feeling. Because of the blog, art and my photos, I've been able to help others who also are struggling. That in itself is worth continuing my ranting/blathering/babbling.

My suggestion to all those who find themselves wanting to make a judgmental or ignorant comment to someone going through something you know nothing about: get educated. If you want to support your friend, then find out what he or she is going through. You are already on the internet, fingers posed on the "comment" field. So why not take a minute to google your friend's condition? Then after you read a few pages on what it's all about, then go ahead and see if your comment still applies. I will help you in regard to my own issues. Here is a pretty interesting and not too technical study about the link between endometriosis and autoimmune disease, as well as fibromyalgia, allergies and chronic fatigue (all things I experience).

If you've read this far, thank you. I feel better having vented that steam. Tschus.

Ouch!

[Click here to learn more about Rheumatoid Arthritis, or RA.]

Bad Bex! I took yesterday off from exercising and I probably should have just done it. I didn't do it today either but to give myself a little credit, I have been gimping around for the past two days. My knees and fingers are really painful lately, which can be attributed to working out at too high of an impact and lots of stitching.

I had my regular rheumatology appointment today with the physician's assistant. She was great and talked with me for about a half an hour. I told her what's been going on, we discussed my last lab results and discussed further treatment options. I was happy to hear my liver levels are back to normal. I'll keep having my blood checked every two months to check liver functions as well as my white cell count.

I also asked her what would happen if I cease taking my medication. What exactly happens if you do not treat RA? I didn't know that the constant inflammation in the body can attack the lungs and heart. Not only would I risk those wearing away my joints and cartilage, but it can cause heart disease. I also asked her if it was common for someone like me to show normal lab results while receiving treatment but still have pain and fatigue. She said absolutely. That's why it's important, she went on, to treat the person, not the lab result. Gotcha.

I also discussed with her concerns about medication and co-pay costs. I walked out of there with two samples of my biologic which made me so grateful. I was able to finally take my shot today and I started a new therapy along with it.

I've noticed that on days when I take my monthly shot, I should take it easy. No work outs, low stress, lots of water and good foods. So for the second day in a row, I'm on my ass. But tomorrow I will be back at it!! Related to this, I found a cool, free tool for people with RA. It's the RA Fit Kit which you can personalize a workout routine to fit your needs and fitness level. Just thought I'd pass that along!

I'm going to chill out today but tomorrow life goes back to 'normal.'

Tschus.