attempting to keep my chin up

So the latest is that I went to the Rheum dr in Boston, and she yelled at me, saying that it was MY fault that none of my doctors were checking my liver enzymes whilst I've been on methotrexate. She also decided not to take me off of it. She instead said that I'm not longer to take any OTC pain meds (which eliminates my daily excedrin) and she also took me off of another anti-inflammatory drug that she had put me on that was helping minimize pain by minimizing my internal inflammation. As of Tuesday she had upped the prednisone to 20 a day to help, until she saw my bloodwork and then we would reassess on Friday.

 Thursday I had an upper endoscopy, which went pretty well, except that the poor anesthesiologist couldn't get my pulse oxygen because my circulation blows. So that took a bit of creative work. Then they did, and they did the procedure, and it was only a few minutes so like a half an hour later I woke up, wondering why I can't take anesthesia every night because it is SUCH a lovely sleep, and the GI dr came in and told me they took a small bowel biopsy to check on the celiacs stuff, and she also noticed some redness and inflammation in the upper left portion of my stomach, so they biopsied from there also, and also to check for H. Pylori. My esophagus looked good though, and the rest of the lower part of my stomach seemed good. Results in 4 weeks-ish. She asked if my Rheum took me of the methotrexate, and I told her what the plan was. She said, well, we don't have all the hep bloodwork back to see if it is caused by the methotrexate, but we'll test your blood in a few more weeks and if the enzymes are still up, then you need to be taken off of it. 

Then, after getting home from the endoscopy, finally took my meds, and because I took them later AND because of the removal of all anti-inflammatory drugs, my body freaked out. Not only did I have a massive headache, but the skin on my head felt (and still feels) horrifically bruised. Like I can't touch it. The skin around my eyes feels this way also, very very tender.

Friday I couldn't go to work the pain was so bad. So I called the Rheum, and she said based on the blood work we would go up to 40mg of prednisone a day, and I could divide it how I want to, knowing that sometimes I need a boost at night just to make it through the night. So I immediately took some more (right now I'm at 30 in the am and 10 at night, though I might go to 25 and 15 because the night was still a bit rough). I then had to follow with a call to my endocrinologist, so that we could adjust my insulin pump levels to accomodate the hike in prednisone, which as we know, raises those blood sugars like eating an easter basket in one sitting. A big one. So that got fixed, and now I'm just trying to hang in.

It is very hard not to be discouraged. I'm in less pain today, but not pain free by any means. And I can't even take comfort where I normally would-food. Basically the GI dr said no lactose. So no milk. Yogurt yes, lactose free-dairy, but the regular milk stuff is a no. Which means no chocolate. I had some vegan dark chocolate last night, but it isn't the same. And the real issue for me is baked goods. Look. I'm committed to being good about my diabetes. I really am. If I was going to eat baked goods, I would have like a slice of pie or cake, or just two cookies, and I would check the blood and bolus and all that. But the fact of the matter is, most baked goods have dairy. So today I'm going to try to go to the organic food store in Old Saybrook and hunt down some GF, LF (lactose free) options, and find out which things don't taste like garbage. I might have to nap before I go though. Because we took the dogs to the park this morning, and I'm already a bit tired. The only problem with a nap is that I'll probably have to shower before I go then, because now with the higher pred dose, any time I fall asleep, even if only for like 10 minutes, I sweat like craaaaazy. So we'll have to do that. 

I just keep trying to sing that song from the old Charlotte's Web "chin up chin up....up with your chinny chin, chin up!" I'm hoping that this liver nonsense gets figured out fast, and then we can readjust my meds. Right now though, with the Rheum stuff, the problem seems to be that there are no other feasible options. I've exhausted the FDA approved lupus approaches, and even some non-FDA approved things, so if my insurance company keeps refusing to do anything, I'm pretty limited on what treatments I can do. And I don't want to be on high-dose steroids for a long time. Moon-face, hunger, fatness, glumness, not to mention the internal damage. Boo.

Chin up.

livah

I spent a good deal of today being sore, and worrying. I went to the new GI dr. Thus far, changes we have implemented include:

-a new heartburn medication

-NO DAIRY

-an upcoming upper endoscopy with celiac-identifying biopsy

-less fats

-lean protein (supposedly easy to digest)

That and the normal no gluten thing. No dairy is mad hard yo. For several reasons. One, I LOVE creamy things. Two, it is actually in a lot of food. I had to buy semisweet baker's chocolate to have chocolate sans dairy. That combined with the GF is making me think I might be losing more weight soon, because I'm too lazy to make the effort to find GF and DF food options, I'd rather not eat at all.

GI lady also did blood work, and found some elevated liver enzymes. Perhaps because of methotrexate. Perhaps autoimmune hepatitis. Perhaps my daily excedrin regimen. Who knows. She is doing an abdominal ultrasound, and informed Lupus Lady. 

That is the news. Boo. No ice cream. Boo.

Saturdays = evil

So one of the things that I have come to realize (after however many years) is that Saturdays are my worst day of the week. Some people may be going out for picnics, or walking the dog, or shopping, but I usually am curled up in a ball of pain for at least half of the day Saturday. I think it works like such: All week long, I get up early (4:30) and work and sometimes hit the gym, or sometimes do other things (come home and read or blog-I have another blog that posts to my college friends & such) and I just keep on truckin. Oh and Tuesdays are therapy days (yes I go to therapy. because my little head is not able to function well with all the body stuff being as it is). But basically I just chug along through the week, same routine. Right around 7-8pm Friday night, my chest starts to get kinda tight, and painful, like I maybe have heartburn. I take my night time meds, and go to bed. Usually pretty early. I'm no night owl. Saturday, I wake up at the regular time, 4:30, just so I can take my medications at around the same time each day, and then go back to sleep for as long as my cutiepie dog will let me (8ish). When I do get up, there is a world of pain. Mostly located in the shoulders and neck, and my chest. Breathing is a nasty endeavor. Some days my hands get The CLAW looking going, all stiff and creepy and swollen, and sometimes my knees will be finicky too. But usually it is the breathing, and the constant nausea. I think this happens because my body knows it is a day off. It knows I don't have to go to work. It knows I can sleep in, and be lazy all day, and not have to be presentable or functional. But the thing is, I've been trying to not be so lazy lately. I want to be productive on weekends. I want to not waste Saturdays. So, unless it is really unreasonable, I'm now forcing things to happen on Saturdays. Like today, today I got up at 8 (per the pup) and we had breakfast (eggs, toast, and some plain nasty yogurt with mashed banana because I hate plain yogurt) and had some tea. My older sister came over, and at 10:30 she, my mom, and I went to the Humane Society to pick up her new dog (a 30yr old pitbull/sharpei mix named Levi). We collected him, then later I took my own dog to the puppy park and we stayed out in the lovely 50's weather for an hour (I tried not to get too much sun....but I love the warmth!) and then came home, and napped. We took in a show at the local high school, and now will have some water, and then to bed. Not AS productive as some people on Saturday, but considering I just plodded through the pain of the day, I think it went well. I think it means that even if my body doesn't want to work on Saturday, I can still get things done. Another little goal sort of reached. woot.

Day One (Like, Step One- We can have lots of fun. NKOTB)

Alright. Here we go. First day of the new blog supposed to be focusing on health-related stuff. I guess I'll do a rundown of what is actually going on with me. 

- Type 1 Insulin Dependent Diabetes Mellitus (IDDM). I have had this for about 7 years, at least to the degree that I take insulin. I had a long honeymoon period before that time, during which I know that I would someday lose the ability to produce my own insulin, and was thus, eased into the disease. This somehow led to me thinking that I didn't really have it, and so despite having been Insulin dependent for 7ish years, I've only recently begun actually taking care of myself. As in, I never checked blood sugars, and when I bolused (I have an insulin pump) I just "guessed" frequently just doing a bolus of 25 units. Dangerous. So now, as in really recently, like the past three days only, I am trying really hard to manage it. Better late than never, and better now then in a few years when I lose my vision or toes because I'm a tool.

- Systemic Lupus Erythmatosus (SLE). My greatest foe. I have had lupus for 5 and a half years now. Early symptoms were joint pain and fatigue, and now we have progressed further to severe inflammation in the chest cavity (including pleurisy and slight periocarditis) which causes a lot of trouble when I breathe. I can't carry my own weight too well up stairs, or running or anything. Because of this, my exercise/cardio of choice is stationary biking. I can go real far, about 6 miles in 30 minutes, and it helps my heart pump and my muscles work, without the pesky trouble of my chest freaking out thinking I can't breathe. I've been on all the regular things, many of which my overzealous immune system has surpassed. The CellCept, and all those other things were long gone. I now am on 20 of methotrexate per week (injected ick), 10 prednisone a day, 200 Plaquenil, twice a day, Procardia (calcium channel blocker to help with my 2ndary Raynaud's phenomenon), Nexium (chronic heartburn as a child, along with other digestive woes- see Celiacs), folic acid, Colchicine about 1mg a day- teeny tiny things. I also take 2 excedrin extra strength every morning, and two excedrin pm at night. I don't use narcotics for pain anymore, but used to. Now I just kind of suck it up, and if I get horribly bad, I have a secret secret stash (not unlike House- only since I know that sometimes it IS Lupus, I don't keep it in my lupus book).

Sjogren's Syndrome- Gotta love dry mouth, not being able to cry when you want, your eyes being stickier than fly paper so you get crap in them all the time, and of course, unmentionable area dryness. Or not. That is the basic gist of it for sjogren's. I have to watch out for my teeth, as of course I am more susceptible to cavities and decay, and I already have had two surgeries for receding gumline issues, semi-related to it. boo. 

Celiac's disease- Wheat and gluten allergy. This and the diabetes combine to make me have insane willpower battles. As a child, baked goods were my absolute favorite foods. EVER. So it blows that I have to only eat wheat-and-gluten alternative foods. To be fair, the market has gotten significantly better lately, some things even taste BETTER than regular foods. It sometimes seems like even when I eat food I am allowed to, (or not allergic to) I still have horrible digestive issues. I had my gall bladder removed a year or so ago, due to some lupus-related evil inflammation, and now have a ton of trouble digesting. I have to drink diet soda or seltzer with almost every meal, so that I can burp and release uncomfortable gas after I have eater. Otherwise it is very painful. Going to the bathroom is a nightmare on a daily basis, which again, leads to pain and difficulty in unmentionable areas. I am nauseous every single morning, some days to the point that I have to sit while styling my hair or makeup, just so I don't keel over with dizziness and vom. And, I recently discovered that I might not be properly digesting my medication, as one day, I took my pills at 7am, and then when I threw up later that day (around noon- I caught an actual stomach bug) there were still completely whole, not even a scratch, you can still read the ETCHING on them pills amongst the green bile. So we are going to see a real GI dr next week. So that I can actually get the meds that are supposed to be helping me.

That is the lowdown on the health issues. Some things I do that I find helpful lately are exercising, and getting massages. I know that a lot of people with diabetes are hesitant about the massages, but as long as you discuss it with your massage therapist, you should be fine. I am someone who works at a desk job, and my neck and shoulders retain all my stress. They become rock hard and combined with the chest pain from the SLE, it is pretty awful. A nice massage really really helps. There are a lot of places that don't charge too much, so I try to go every few weeks, to keep the muscles from tightening up too much. The exercising is really important too. I know with all these things it is really really easy to be lazy and too tired to drag yourself to the gym, but it helps a TON. Not only do I get the endorphin rush after biking my 5-6 miles, but I do some weight lifting (I am, of course, at major risk for osteoporosis, which I already have a bit, from the drugs, and the fact that I am whitey white girl. irish. pale skin. blond hair. blue eyes. DEATH for bones) and the weights help me out too. Plus the whole gym thing tires me out so that even if I am in pain, I sleep through it at night (sort of). And there are cute guys at the gym. Just blast your iPod and watch some ripped hottie lifting, it will keep you motivated! Other useful things: green tea. good for digestion, good for a little lift when you start to snooze at your desk (which happens a lot to me) and good for appetite curbing. Plus everyone is always touting its wonders. Can't hurt! One of the most therapeutic things in my life is my dog. She is a 22 pound cockapoo named Vivienne Tallulah, I got her just prior to most of my diagnoses (because my whole family thought I was dying so they bought me a puppy). She is the best. Petting her and playing with her just makes me calm down and not stress about bull. Even when I was away at school for my under graduate work, 4 years, she was something that really helped, every time I came home, she greeted me and loved on me without abandon. Everyone needs something like that. I also find that being distracted helps. Find a goal. Obviously, not something that is going to tax your health, or your energy resources (already a bit low!) but something you can feel devoted to that will make you feel good, even if you aren't feeling hot. I'm working on studying for my GRE's, in the hopes of getting into a PhD program (I was a summa cum laude BA in history- now I want more). My intention is to become a Dr., but not the kind that pokes prods and gives you awful meds and tells you that this is as good as it gets (yes I'm bitter). I looooooove history, and can't wait to get into grad school and be studying again. Right now, I'm working on my semi-deficient math skills, so that I don't bomb that portion. Other than that, working in an office, living at home (boo recession) and just trying (bit by bit and day by day) to take care of myself. As I said, the diabetes realization may have been late to hit, but I am trying. I hope I can share my stories, and read some others, and connect over this nonsense that is my life. 

Feel free to ask or comment, or suggest anything!