I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone.
(I added these in the upper left hand corner of the blog, right next to About Me.)
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 can’t believe we are halfway through the year and I’m still pretty much holding down my bed. There are SO many things that; have happened/are happening/are going to happen, it is overwhelming at times. I can’t post about them specifically as they are family issues, but the stress has all but immobilized me.
I have been putting off going back to the new rheumy to start treatment because there is too much going on and I’m needed here to help. At the same time, the longer I wait and the more I do, the sicker I become. It’s so cyclic. Yesterday I told Big C, just go ahead and call. Try and squeeze it in on any day that we have free and I’ll be there. I just can’t wait any longer. Oh, the guilt of it all is unbearable. I feel guilty now when I’m really sick because so many people need me. I’ve been pushing myself and I’m not new enough to think this will have no consequence. sigh. I need a shower people!!! Yes, that is my goal is to make it into the shower today. Taking it minute by minute.
Recently I posted my first ‘post’ Cushings picture on FB. I don’t look as bad as I think I do.(‘they’ say) I still got it! LOL No, I just got more of it. 🙂 I’m finally coming to terms with the ‘cosmetic’ side of the disease. I am huge compared to my natural weight, but you know what? C still thinks I’m hot. And really, that’s all that matters. woot! I think he’s nuts but I’ll take it. Seriously though, we have seen more lows than highs in our 11 years together. They are usually not our lows, but lows we have had to deal with nonetheless. And we are still together. We are still desperately in love with each other. We are still our favorite people to be around, we make each other happy. He is an amazing man, and I thank God everyday that I was blessed to find my soulmate. OK, enough sappy shmappy.
But in the same vein as vain, ha ha ooohh k, I have found myself scouring the wig catalog that keeps finding it’s way into my mailbox. I’m convinced C’s ex had it mailed to me to begin with, but now I love’em! There are so many rad wigs out there. I WANT ONE. Is that crazy? Are wigs just for grammas anymore? I mean older grammas. I know I’m a gramma. Just not old yet. I’ll be 43 tomorrow, so I’m young to my daddy who’d 80, but ancient to my daughter who’s 20. whatever. So, I find myself picking them up and looking through and actually pining over 2 of them. Wigs. Pining over wigs. Who am I???? 🙂 I’m losing my hair, that’s who I am. So anyway, I decide to look up the company online, and just Google the name and the first couple are always a couple of ads. One of them says, why buy from company x when you can get quality for the same price? And I decided to click on there. Well, I must have been in need of a laugh, because I could not stop laughing. Belly buster laughs. I’m sure it’s-you had to be there-kind of a thing. But each model, down each row was just HILARIOUS!! And I’m not knocking wigs, or wig models for that matter, per say, just these particular ones. There was 3 faces they had while modeling the wigs. 1. faux sexy tigress 2. scared 3. incredibly embarrased
I just couldn’t stop laughing. And who did the final go ahead with the website after seeing these shots?? I’m not talking about Paula Young’s site btw, I put a link up to her site. That’s the catalogue I keep receiving. I really, really want the Renni, in that exact color… OK, I’m done yackin about wigs.
I’m really missing being here. I’ll be here more often. Promise.
until next time,
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?
Kinda. The past couple of weeks have kicked my ever-growing butt (thanks Lyrica!). I’d like to apologize to my readers for being gone and not checking in even. hrmmph. I’m being optimistic about the readers thing, I have no clue if I have a following or not. So if not, I’m sorry me, for totally neglecting this blog.
I’ll be back on track real soon
I haven’t posted in a while, again. I have been flaring really hard, and I don’t want to whine about it. Yes, I realize that this is my blog and I can whine if I want to. I’ve just been very un-bloggy lately. More on this half-hearted update after my meds kick in…