I have dropped off the radar again. Not intentionally; the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me. I haven’t talked to my best friend in at least a month. Again, not intentionally. I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore. I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop. I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit. I actually missed my last one. I couldn’t get out of bed so C went and picked up my prescriptions. This is no way to live, I feel powerless to change it.
Between non-stop flaring and being a momma, I have no time for anything anymore. Facebook, my Christian groups, Flickr, television, nada. For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill. It’s my ticket out into civilization, lol. …
I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression. No exaggeration there. And yet, I feel optimistic. Why? Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!! I asked him if he’d be mine, and he said yes! My new rheumy I mean. Big C approves 🙂 I’ve never had such instant access to a doc before. In my experience, you call the office and they have a system of blockers. The front desk, then the assistant. You don’t get to speak to the doc him/or herself unless you make an appointment. I might get some flack for that, but I was an assistant and we were taught that in school. It is your job to keep the patients away from the doc so he can get through his day. And I mean patients calling in, not the ones in the office, lol. Docs are busy and they always have a full schedule. So medical assistants are crazy-busy and work especially hard. Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees. Stepping down from the soapbox. Anyway-the hospital has an e-chart system. I always said I would never want my medical info online and now I love e-chart. You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY! Wee hoooo! OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.
New Doc told us to email him as soon as my rash came back. On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red. He already told us that it’s really hard to diagnose retroactively. After seeing the pics you could see the wheels turning. He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s. He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step. I didn’t ask which med for the RA, I was overwhelmed with his efficiency. I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis. Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results. So I’m scheduled for an MRI of my femur. That should show disease. I’ve gotten set up with an ophthalmologist because of the double vision that I have. Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed. My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh. So I’m getting checked for toxicity in my eyeballs. I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis. I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out. I feel like I struck gold in the healthcare hills. Bout time and I deserve it!
The hospital has a tram that takes patients from the top of the hill to the bottom. And vice-versa. It reminds me of the ride at Great America that takes you from one end of the park to the other. Boring, but you take it anyway. It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it. So we got out and I started snapping away with my soon-to-be-broken camera. yes, broken. and this was my point and shoot. my Nikon D60 is laying in it’s bag, broken too…
I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me. It looks kind of ghostly actually, spoooooookyyyyyy.
This next shot is one of the tram but with many, many trees in the way. Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!” Good times.
Everything in our backyard is either blooming, budding or just screaming to be photographed. It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos. I have a couple thousand on this computer but it only goes back a few years. I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor. But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!! I almost started screaming, my kids! my kids! Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’ He didn’t have his hearing aids in and I startled him, lol.
Alright, my eyes are blurring. I’m on the 3rd day of a migraine. This is a first for me. I’ve had a weird head pain that lasted for months, but this is a true blue migraine. I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair. I’m coming back tomorrow. I need to keep writing or I’m just going to isolate again, and I just can’t have that.
I am bed-bound at the moment and pretty darn low. I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me. I’m just going to post this awesome video about Erica.
The Arthritis Foundation has a campaign called the Power of 10. You watch the video, forward it to 10 people, and give a gift of 10 dollars. Let’s spread the word. Just click on the Power of 10 link and check it out. What a really great simple way we can all make a difference. God Bless.
I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!! I went 3 years with no insurance after I lost my job. The amount of money I owe for medical bills is astronomical. I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha! Good thing I have The Big C. I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.
Anyway, back to the Medicare. My primary care doc has given me a referral to be seen at the big state teaching hospital. Yeeeee hoooooooo!!!!! I finally have some kind of coverage that gets me in the door. I am so happy. For the past 3 1/2 years I’ve had doctors scratching their collective academic heads and going hmmm. Then I get a diagnosis, and I get it taken away. Peek-a-boo! It’s here and then it’s gone… The only one that hasn’t been taken away is the small fiber neuropathy. That’s because I had a biopsy and they could actually see it and diagnose it. It sucks that so many autoimmune diseases don’t have one clear test. It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame. As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis. Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork. I just can’t wait to be seen at this hospital, I’ve been too sick for too long. I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode. It wouldn’t be pretty that’s for sure. I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees. As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts. It means, shut up, you sound like one of those people that like to tell you all about all of their aches and pains when you say hello. If you could feel your pancreas hurting, your pretty much hurting everywhere.
Change of subject: Here’s kind of a happy thing, for me anyway- I finally got Photoshop elements 8!!!! I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend. And, I bought My Memories Suite. Yeah!!! That’s where I’ve been spending my free time lately. I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements. But-I don’t have much free time, or not as much as I would like that is.
The other day I was searching for the video camera. Our house is a little ‘cluttered’ now that I’m on a break from housework, ha! I was going through stacks of stuff in the corners of our family room and I found my bag of knitting. I just stared at it and was like, oh wow. When is the last time I’ve seen that bag and how did I ever have the time to knit?? I remember sitting on the loveseat upstairs at night and going through new patterns. What life was this in? I swear there aren’t enough hours in the day now. And I’m home all day so I don’t get it. It seems like I had more time when I was working full-time, but how can that be? Maybe it’s like money. The more you make the more you spend. The more time you have the more you need. I don’t know but I felt a little sad just thinking about it.
I’m off to check on some websites and figure out which ones I’m going to drop. I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard. I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook. The rest is going to be hard to choose. I’m leaving you with a few shots from this time last year. Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice. Enjoy and until next time
no copy or use of photos allowed without express written consent from genius, uh I mean blog author 🙂
I used to work in a drug and alcohol inpatient rehab facility. That’s a mouthful. Each night I would come in and meet with the swing shift nurses and get caught up on who just came in, what their drug of choice is (that would determine their detox protocol) and who was the troublemaker of the day, there always was at least one, and so on. These people who came in to detox, they were in for probably one of the hardest things that they’d ever had to do, emotionally and physically.
After report I would go and check everyone’s vitals, see if they qualified for any medications. Some of the patients wanted to talk, others wanted me to just get the hell out of their rooms as fast as possible. None of the patients wanted anyone to be a part of their nightmare, as they called the withdrawal process, to see them at their worst. Most were embarrassed and wanted to make sure that I understood that they weren’t bad people. I loved my job, I felt that I had found my calling, but I was so soft. I couldn’t get that hard-ass attitude that was needed when they would try to trick you into letting them break the rules. Drug addicts are the best manipulators in the world. I know, I was with one for 10 years. All of this is coming back to me today. Today I am in withdrawal. But I am home-not in a facility, I’m not an addict but a chronic pain patient, and no healthcare team is seeing me at my worst- my family is. I am dosing down off of a narcotic pain medicine that does not lower my pain levels. Withdrawal is part of the package, you can’t tell your body to mellow out, I wish you could. Am I an addict because I take pain medications? I say no. I am trying to survive, and have a quality of life that is livable.
I have been through so many different ‘things’, the only word I can come up with, with this disease. It has ripped me apart. I have found strength in myself that I have never known. I have come face-to-face with prejudice. Hatred almost. For taking narcotic pain meds. Some people think that I shouldn’t. I’m not a cancer patient! To that I say, no I’m not. A cancer patient has foreign cells attacking their body, I have my own cells attacking my body. Why would the pain be different? Because everyone knows what cancer is. and autoimmunity is not that well known. A cancer patient has a chance for therapy to eradicate the foreign cells with chemotherapy and radiation. It doesn’t always work, but there is a chance for recovery. I don’t have that chance. They can’t kill my own cells to stop them, they are mine- not foreign. There is no cure for me. I am in the process of finding the right mix of medications to stop or slow down my system from attacking me. Some days I wish I had cancer.
Wow, what a rant!! Like I said, I’m in withdrawal. Self-induced to get off of one medication so I can try another that hopefully will bring my pain level down enough so I can live my life without constant pain. An article showed up in my email and it is about chronic pain patients with depression. After reading it I was so pissed, until I remembered-people just don’t get it. If you are CHRONIC PAIN patient, your pain is there ALL THE TIME. Acute pain, probably get a scrip for pain meds and then none because the pain goes away. Chronic pain=always. sigh. The first paragraph of the article states that ‘they are more likely to stay on them long-term’, duh!! If you find something that works, you stay on it!! Your chronic pain isn’t going anywhere. Also, ‘they are likely to become dependent on them’. another duh. Where are the statistics in this article that states that people with legitimate chronic pain are less likely to abuse narcotic pain meds than ‘regular’ people. I’m going to have to find that now. I am a chronic pain patient. I am on one of the biggies for narcotic pain medication. It’s not working for me. I am dosing down off of it so I can stop taking it. I will try something else. I’m not stuffing more and more into me. I’m doing the logical thing. I think most chronic pain patients would do the same. All we want is to be pain-free, or at least a tolerable pain so that we can go about living our lives as we used to be able to! Story below that got me on this rant. Until next time
Depressed pain patients more likely to get opioids: study
Reuters Health UPDATED 2009-11-18According to a new study, chronic pain patients who suffer from depression are more likely to be prescribed narcotic painkillers such as morphine and codeine. Researchers also found that depressed patients were more often given higher doses of these opioid medications, and they were more likely to remain on them long-term. Researchers say their finding suggest that more study is needed on narcotic prescribing practices for depressed patients, especially given that they are more likely to become dependent on these drugs. Read full story >
I’m still pulling myself out of the hole….here are some happy pics!
Today was pretty rough. I slept more than I was awake. On Easter. Very depressing.
Tomorrow will be a better day, that has always been my mantra. AND, Spring is here~that means I get to get out when I can and take more pictures. Finding a good shot of something in nature is better than a pain pill 🙂
I can’t believe I caught the bug. My granddaughter got sick 2 days ago and her fever finally spiked and fell last night. I woke up this morning and whammo. Body aches, head ache, uggghhhhh!!!! I vow to stay in bed today and take care of myself…with my laptop. I’m such a nerd.
When we arrive they call my name shortly after we find a seat that doesn’t have something sticky and wet on it. I am called into a cubicle where an overworked and sweatty, although nice, woman questions me about my insurance or lack thereof. I mumble that I have applied for Charity Care and that it’s in the works. Two years ago I was a contributing member of society with 2 jobs and insurance and was never looked down the nose at by pencil pushers.
We get up to locate seats again and have to squat in the corner of the room and wait for someone to get called so we can steal their warm seats. I pass the time by people watching and notice that other people are watching me. This disease has taken it’s toll on my looks. My skin is gray, splotchy, and I have deep set lines where there were none before. My hair is falling out. At first from the disease, then from the meds, then from the months of methotrexate injections. It is now limp and light and blow away hair. The kind of hair in my old life I would have noticed on someone and thought ‘ I can’t believe she went out of the house looking like that’.
There is an old woman who is very large in a wheelchair planted a few feet from us. Her son (?) pushed her there and then got as far away from her as possible. He looked so angry and I wondered if he was her sole caretaker. If so he needed a vacation, I could only hope he didn’t treat her badly at home. Two young girls sat to the left of us giggling and I figured they were there for a pregnancy test. They did not look sick. Every one else was in their 70’s and above. One man was talking loudly about all of his previous surgeries and his money issues, no one was listening but he had a captive audience so he just kept on talking.
A woman opened the door to the lab and called my name, loudly. We got up and when I smiled to say hello she cut me off and told me to sit in chair number 3. I usually just keep on being pleasant no matter what, it’s in my nature but I decided~ screw it. I’m tired of being nice to all the cogs in the wheels of the healthcare industry that could care less about me and more about when their smoke break is coming up.
I sat in the chair and my husband held me coat. I didn’t say a word. No small talk, this woman was getting no niceness from me. I didn’t even want to be here in the first place. Then she read the labs that I was to get drawn. Her demeanor changed and she smiled and explained to me that one of the tests she was very familiar with because she had it when she had problems with her kidneys. She then limped over and got the largest pee container I’ve ever seen and told me I had to catch 24 hours worth of pee. I almost started giggling, thinking of trying to catch this runaway pee. She took 8 vials of blood and talked to me about the snow and how everyone in this state is an idiot when it comes to driving in inclement weather. She kept smiling at me and now I was wondering what changed this cranky old woman into my best friend. What did she know about those tests that made her feel the need to be nice to me?
I haven’t blogged for a few weeks, been pretty sick. I’ve got a lot to say, but haven’t blogged it because I didn’t want it to be depressing and whiney, LOL. I’ve got a few things to do to fix this blog, first one being the blogroll. I have links there instead on other blogs, ooops. 🙂