I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really
Hey all. It’s been a little while…I’ve been conducting an experiment that sounds ridiculous, and now I’m starting to think it is. My PC told me a while back when I wanted to go up on my pain meds that he thought that I would be in the same pain without them as I am with them. I thought he was nuts. So he referred me to a pain clinic and on my first visit after describing all of my pain
, the doc told me he thought that I was hypersensitive to the drugs. Whaaa?? I have never heard of this, and this guy must be a smooth talker because after a while I was nodding my head and going uh huh, uh huh. ( I just found an article that explains Opioid Hypersensitivity Syndrome or Hyperalgesia here. )
So, I am in the process of dosing down off ALL pain medicines to see if they are causing me pain and making me sick. Right about now I’m thinking, um no. I am close to being off of them (this is the last week) and man that was fast. He had me taking 30% less each week. I had to put a clonidine patch on to help with the withdrawal. These are the times that I question what the heck I am doing. I am in pain, and I’m in withdrawal, and I am barely functioning. As my kids say-this sucks.
But, I didn’t get on here to whine. Well, maybe a little… I wanted to write about my experience the other night. My jaw was killing me. Like a 9 on the pain scale. And my pain scale is completely different now. What was once a 9 is now like a 4, if that makes any sense. This pain is from a tooth gone completely wrong. A wisdom tooth too. Anyway, I’m holding my jaw, I’m crying and I’m thinking I can’t believe after everything I’ve been through I’m being taken down by a tooth! So, I’m hurting and there’s no amount of orajel that’s going to give me any relief and I start to pray. I’m asking God to please help me. I can’t even see the pain is so sharp. I have to be able to be there for the Bean. Please help me. And, my pain just diminishes. Just gradually easing up and poof. Gone. I praised Him and thanked God, thank you, thank you!!
Sometimes I forget to ask God for help. Sometimes I feel selfish when I do. He is showing me that He does love me. Unconditionally! I just wanted to tell everyone to ask God for help when you need it. And yes, there are times when we don’t get an answer, at least that’s the way we see it. But I think that is the answer. Some things we have to figure out on our own to learn something. Make sense? Maybe 🙂
I get the weirdest spam on this blog. There’s tons that are just gobbledy-gook like a cat ran down the keyboard and here in there in the mix are some smut words. Other times there is a paragraph of nonsense. Makes me laugh as I go through them. Here’s one
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It reminds me of grade school when the teachers gave you your first ‘real’ writing assignment and it has to be x amount of words. Lookout thesaurus! I’m gonna throw in as many descriptive words as I can get away with for describing the waters George Washington was crossing. A for effort to the spammer above, although it was probably just computer generated.
, except now it’s Fall. I’ve been battling depression and trying to fake it ’til I make it. It a motto Big C and I stand by and I try really hard. But lately, I’ve been mopey. I had my infusions last week. My ‘head pain’ came back and my rheumy threatened to pull the plug. I whipped on my shades and then proceeded to cry like a baby in front of all the other infusees. He said it was too dangerous, chance of me having a stroke. Huh? I sure didn’t read that anywhere. So C and I pretty much begged. The infusion nurses, who btw are saints, suggested I take an oral toradol added to my pre-meds, and then IV toradol at the end of the day. This being what stopped my head from exploding in the ER the month before. He agreed and put it the order and the next morning I showed up just praying, praying for no pressure that ultimately turns into the head pain. I took my pre-meds, tylenol, benadryl, and toradol along with my regular pain meds and sat back in the chair and prayed. The infusion nurse chatted as she hooked up my IV and I prayed silently some more. Well, before they hang the bag of immunoglobulins, they hang a bag of solu-medrol as part of my pre-med package. It’s like liquid prednisone (yuck) I feel fatter just thinking about it. Anyway, as soon as the drip started my head started to swell with incredible pressure. It’s the solu-medrol not the IVIG!! I was so happy!! I can continue with the infusions! And that’s when I found out my rheumy decreased my dose this time as a precaution. He told me it’s the least amount he could give me without stepping in to the non-therapeutic range. Well-it’s been over a week, and I’m not feeling better like I did last time. I was SO looking forward to that well-floating-in-a-cloud-back-to-healthy-feeling. It’s not coming and I’ve got the pity party blues.
I’ve got to get into the shower, pull up my bootstraps and fake it ’til I make it. Woot! Or, I could stay in bed and scrap. That sounds good too. I’ve got tons of new graphics just waiting to be pieced together around my beautiful family. I’m thinking I’m going to choose the latter. As a matter of face, I already chose =)
Until next time
Picture above: I got that shot on the way to the hospital’s infusion center in a moving car. It came out pretty good considering, but I tossed it into Picnik and did some heavy duty editing with all the goodies they have. =)
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 finally made it to see the rheumatologist at the hospital. I had to cancel my appointment a couple of weeks ago because my dad showed up at my door in a state of dementia. I didn’t give them the reason why I had to reschedule, and they set the appointment out a few months. I was so upset. The next day they called with an opening for the following week. It’s unheard of there so I figure God was listening.
It wasn’t easy getting ready to go. For the past month, maybe even two, I have been mostly horizontal. My body is failing me in so many ways it’s hard for me to even talk about it. I laid in bed until the last possible moment time-wise and then climbed the stairs to get in the shower. I hate to say this or even type it but showering is near impossible for me. I have to use a step stool to sit on
, ugh, I won’t even go there. So my and C finally get into the car and we are almost on time for the hour and fifteen minute ride. I’m out of breath, sweating like crazy (it was about 40 degrees) and shaking. All I wanted to do was go get back in bed and close my eyes and pray.
Minutes after meeting the doc I was hopeful. He LISTENED to me, very important in trying to diagnose. He asked so many relevant questions. I felt like I was being heard for the first time in a long time. He talked to us about the tests he was going to do and wants to see me back in 4 weeks. I was a little surprised as I thought it was a one shot deal. I want him as my rheumatologist and am going to ask when we go back.
Since my appointment was the last of the day, their labs and x-ray were closing down. He actually ran to his office to put the orders in and walked us to the lab. I have never ever seen a doc go out of his way like that. I actually cried. What a doofus, I know. It felt good to have some hope. I need answers just as much as I need some relief.
Have you ever had a doc go above and beyond? If so, is this the norm for your specialists?
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
It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.
OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.
Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something
, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him
Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.
That’s our girl. Through all the pain, she made my day.