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sharpiessave
09-29-2011, 08:44 AM
Advanced warning: This most likely will not make much sense. : )

Around my house we call it a "bad head space." It's when all the symptoms of The Mess just really get to me, my soul or something, and I kind of mentally shut down. I start to focus way too much on myself, in negative ways. And when that happens I feel that anything I have to say about anything else but me will be negative too, so I just stay quiet. So that's where I've been these last few. . .well, it feels like forever. I've still been watching you guys (creepy or not); just checking in every once in awhile for that boost of "you're not in this alone." I even started to respond to some posts, but I stopped myself in order to not spread any of my bad mojo.

So that's reason #1, I think. Reason #2 is that when I'm in that head space, my computer is primarily used as a distraction from myself. So instead of maintaining my relationship with you, my cyber family, I watched every single episode of Scrubs. But I'm going to try to be back now, in the mix, that is. Because I know that even though we all need a little time away sometimes, my life (and head space) is much improved by my relationships with all of you.

So here's the shortish rundown of what's been going on with The Mess:

I've officially stopped working. 911 dispatch and brain fog just don't mix. I'm gathering all the paperwork to apply for Medicaid and maybe disability. I'm daunted by the disability though. I've heard such horror stories. . . We'll see.

I'm still undifferentiated. That's frustrating. But I'm bolstered by my family and friends' recent realizations of just exactly how sick I am. That would sound silly to anybody but us, right? But it's so validating when people acknowledge that there really is something wrong.

I just switched around some meds, and I really think they'll help that head space thing. I started Cymbalta, which my SuperRhuemy gave me free samples of. I'm pretty sure I remember some of you guys have had great success with it.

Mostly I just want to say that I'm back in the land of us, and that I missed all of you while my head was traveling. I know there's no pressure here, but I really feel better when I'm involved in the sharing that takes place here, so I'm gunna try to keep up with that. You're all awesome!

tgal
09-29-2011, 09:31 AM
I am so glad that you are back! I think most of us understand the bad head space (we say that at my house too). Don't let the disease swallow you. Although we have to deal with it daily make sure that, for the most part, you have it by the handles and not the other way around.

Welcome back. You were very missed!

debbie-b
09-29-2011, 02:41 PM
I know, how you feel. When my brain fog is really bad, I don't want to talk to anyone, not even my syber family, because I can't make myself understood. Sometimes I will write something and then read it and it doesn't make any sense. So I will just sit here and read and my thoughts are with everybody.
My husband knows too, when I am quiet, that my brain fog has taken over.

Debbie

sharpiessave
09-30-2011, 08:24 PM
I've been trying really hard not to let the disease get the best of me, but as of right now I'm failing hardcore. The brainfog is outrageous, and the fatigue has gotten worse than ever. But the thing I'm dealing with the most now is pain. Apparently in the midst of my most current flare I jacked up my back. I have a buldging disk (L5-S1) and a weird extra vertebrae that, on good days, are mostly just annoying. But I had a crazy fun weekend, then a stressfull few days following that, and on Tuesday I woke up a mess. The pain was shooting from my lower back/hip down my right leg like nobody's business. And since then it's just been getting worse.

I've tried taking it easy. I got permission from my Rhuemy to double my prednisone during this episode. I'm on a really high dose of vicodin, and alternating that with ultram and ibuprofen. But nothing is taking the pain away. When I'm laying down it's a 3. Sitting is a 5. Standing up is 7 and walking, or any other movenment at all, is a 10. So much so that I've fallen down a few times. I've gone back to Ambien to get some sleep, but I keep waking up turning myself over in pain, so I'm extra exhausted.

I don't know what else to do guys. Tomorrow I'm going to stay in bed all day long, with the exceptions of potty breaks. I'm keeping up my my meds and alternating hot and cold on my lower back. I really don't want to end up admitted to the hellspital for pain control, so I'm wondering if there are any other narcotics that I can take at home that will take this stupid, stupid, stupid pain away. I can't believe it's outlasting the vicodin.

I've had bad times before with The Mess, but this is by far the worst. I'm unable to do anything, any part of my normal life, without crying in pain. And that's just ridiculous, and I'm sick of it. So does anybody know what options I have? What should I ask my magic NP and my SuperRhuemy for? Does such a thing even exist?

I seriously don't know how much more of this pain I can take. Sorry to be such a bummer, but I'm struggling pretty hardcore right now, and can't seem to get my head out of this fog.

Thanks for any ideas or suggestions, and I hope you're all doing much, much better than me!

Sharpie

Nonna
10-01-2011, 04:52 AM
O my I want to cry. I thought I had it bad at the moment. Hugs and more hugs.

You are not alone with this mess. I'm in a bit of one myself at the moment and my job is questionable. I may be losing it due to brain fog.

Hugs for both of us

tgal
10-01-2011, 09:41 AM
I just hate this disease

Bonita
10-01-2011, 09:50 AM
Glad to see you are back and this diease is crappy in the least but we are here for each other Bonita

sharpiessave
10-01-2011, 05:06 PM
I just hate this disease

Man, me too! I hope to someday be one of those awesome people who's life has been changed for the better because of the struggle and over-coming of the disease. But these days it just licks dirt. Bonita, you're right; it's so theraputic to get on WHL and know that you guys know exactly how I feel, and have probably made it past this feeling before. I'm bolstered!

Gizmo
10-02-2011, 07:53 PM
First of all, I am sorry you are so sick and in so much pain. I've had some flares, but nothing like you describe. My daughter is "undifferentiated" also and it is a frustrating place to be - especially since there are new lupus drugs available and in testing. She's had good luck with long acting narcotics, like Exalgo and ... oh damn, can't think of the other one. Anyway, you probably would have to get it from a pain management doctor, but they are supposed to last 24 hours. It's made a big difference in her sleep. The brain stuff just sucks. I love your posts because they go right to the heart of the matter. I hope you can find the mental and physical energy to hang out with us while you are home.

sharpiessave
10-02-2011, 10:08 PM
Disappointing update time:

I finally got sick enough of the pain to go to the ER. 3 1/2 hours later, and I'm right back where I was, in bed, in pain. They tried really hard, but nothing would work. I used to work at that ER, and my mama's the education coordinator there, so I know all the nurses and docs really well. We started with two shots in the butt; Toradol and Norflex. That did nothing, so I got an IV, Solumedrol, and Dilaudid. I got a little head rush from that, so I got my hopes up a little, but when I moved my right leg, pain still shot everywhere. We waited a little while to give the steroids some extra time to kick in, then I got another round of Dilaudid, which capped me off, pain med-wise. They gave me everything they could, and it just didn't work at all.

There was talk of admitting me for pain control, but since they couldn't even get my pain down in the ER, I decided to come on home. It's a small hospital, and they don't have radiology on call over the weekends. So tomorrow I'll go to my magic NP for an MRI to compare to the one I had 7 months ago. I'm wondering what the earth to do now. An epidural, maybe? I'll absolutely ask about that Exalgo stuff (thanks Gizmo!). It's definitely time for me to be in pain management.

Know what's kinda weird? This whole thing has given me a totally different outlook when it comes to pain. A pain paradigm shift, if you will. Before this, I had no idea that there was pain that couldn't be treated with pain medicine. Why didn't I know that? Let's see if I can complete this next thought coherently (doubtful). . . Ok, so, even though this pain is huge, and occupies my every freaking thought, it's not the kind that'll kill me. I mean, I know it's dangerous, and it's putting extra stress on my body that'll probably throw me into another flare, but it's not immediately life threatening. So even though I still don't think I should have to (nobody should HAVE TO), I'm learning to live with it. I'm starting to accept a pain level of, say, 6, as the norm. I know that at times, like when I have to reach around to wipe (sorry bout the TMI) it'll skyrocket to a 10, but it has to be done, and it makes the 6 easier to bear. So I take a deep breath, do my business, and get back into the 6 groove.

I guess what I'm trying to say is that the longer I deal with The Mess, the more hardcore I feel. I think we all should. We live with this ridiculousness every single day, and we keep calm and carry on. For the most part. ; ) We're sorta like super heroes. Seriously. Seriously, you guys! We handle this stuff. We deal. We're pretty spectacular.

tgal
10-03-2011, 06:30 AM
Hello my dear friend.

I have to agree with Gizmo when she commented about how you go "right to the heart of the matter". I LOVE how you get right to the point.

I am so very sorry that you are going through all of this. It sucks so badly! I am sorry that they couldn't get it under control in the ER! Hopefully you can get to a doctor and get it all under control soon. PLEASE keep us posted!

sharpiessave
10-03-2011, 09:11 AM
I'm going in for the MRI in an hour. I had to pull every string in that hospital to get it done today. I'm pretty sure at least 3 people hate me now. That used to really bother me (cuz I'm so gosh-darned lovable for Pete's sake), but this situation has gone on long enough. So before each phone call I channelled Rob. WWRD? I made like those people worked for ME! I'm done feeling silly, or like an inconvenience.

Actually, I've claimed my inconvenience, and no longer give a toot if my massive pain causes a glitch in somebody else's work day. What's the matter with these people? I never rolled my eyes directly at a patient when I worked there. Yeah, frustrating things happen. That's what breakrooms are for.

Ok, calm down me. That's the pain talking. Pain has a big ugly mouth. It also curses up a storm, but that's what the delete key is for. The good news is that thanks to my stellar connections I get to have the proccedure done today. That's so lucky. I know that many, if not most of you guys have no choice but to wait on the big hospitals to fit you in. Man, if I could, I would hook you all up so fast. I'm right now picturing a utopian society made up of us AIers and our best advocates. There are steroids pumped into the air, and swimming pools filled with cherry jello, and a thousand MRI machines. Every bed is made by NASA, puppies are light as a feather so you can carry them around all day, and sweats are considered formal wear.

Sigh. . . you can bet that's where my head will really be when that machine is banging all around me in an hour.

I'm feeling tons of love for you guys today.

tgal
10-03-2011, 09:18 AM
I'm going in for the MRI in an hour. I had to pull every string in that hospital to get it done today. I'm pretty sure at least 3 people hate me now. That used to really bother me (cuz I'm so gosh-darned lovable for Pete's sake), but this situation has gone on long enough. So before each phone call I channelled Rob. WWRD? I made like those people worked for ME! I'm done feeling silly, or like an inconvenience.

Actually, I've claimed my inconvenience, and no longer give a toot if my massive pain causes a glitch in somebody else's work day. What's the matter with these people? I never rolled my eyes directly at a patient when I worked there. Yeah, frustrating things happen. That's what breakrooms are for.

Ok, calm down me. That's the pain talking. Pain has a big ugly mouth. It also curses up a storm, but that's what the delete key is for. The good news is that thanks to my stellar connections I get to have the proccedure done today. That's so lucky. I know that many, if not most of you guys have no choice but to wait on the big hospitals to fit you in. Man, if I could, I would hook you all up so fast. I'm right now picturing a utopian society made up of us AIers and our best advocates. There are steroids pumped into the air, and swimming pools filled with cherry jello, and a thousand MRI machines. Every bed is made by NASA, puppies are light as a feather so you can carry them around all day, and sweats are considered formal wear.

Sigh. . . you can bet that's where my head will really be when that machine is banging all around me in an hour.

I'm feeling tons of love for you guys today.

LOL You are cute even when being mean! Keep us posted!

sharpiessave
10-03-2011, 01:50 PM
Argh. I so wanted to have amazing news. Instead it's more of the same indecisiveness. This MRI didn't show any change from the previous one. Same stuff exactly, apparently. My NP thinks the problem must be inflammation from my immune system trying to kill itself. She thinks the steroid shot they gave me in the ER will help eventually. She hooked me up with a pain management clinic on the 20th, which is awesome, but that's as far as she can go. My Rhuemy hasn't received the results yet. At this point I don't even know what to ask him for next. I think maybe the only thing I can say is, "Hey, I've got this uncontrollable pain, and an appointment in 3 weeks. Is there ANYTHING I can do to survive until then?"

Thanks everybody, for all your thoughts and good vibes today. Knowing that I had you guys to come whine to is the only thing that kept me from crying in frustration on the phone with the NP. I thanked her for all her amazing help today. She said, "I wish I could fix you." I said, "Aw, man, I wish I could be fixed."

What a bummer. Here's hoping a nap will help.

Gizmo
10-03-2011, 04:46 PM
Sharpie, you are hysterical and I think you should write a book about all of this. You have a very unique voice and point of view. It is empowering to read your posts, even when you are in misery. I wish so much that there were easy answers for you and all the rest of us. My daughter struggles much more than I do, and I am continually amazed by her strength - even when it seems that we have exhausted all the avenues. What I have learned through all of this is that you need to maintain hope that someone can help you, that there is an answer out there and somehow you will find it. We've learned to get excited over tiny victories, and add the negative test results to the pile of "single socks." You know, that basket of socks that don't seem to have any purpose because the mate is gone. Every once in a while, someone will find the other sock and a piece of the puzzle will fall into place. Jeez, that didn't make any sense. Anyway, please keep posting and I hope you find some relief. Oh - have you tried soaking in Epsom Salts? That helps my daughter when she is really hurting - the magnesium gets absorbed and helps relax muscle spasms.