Down and out

I am getting to the point where I feel I am just subscribing to the fact that I will never be well again. That's a crappy place to be, but I haven't seen anything to really help me believe there is any relief in sight.
 I know (as we all know) there is NO CURE for Lupus. However, do you know that many times, the benefit of the treatments for the symptoms just don't outweigh the risk? I am on so many medications right now, that I feel like I should at least be able to walk. Nope.
I am in so much pain in so many places on my body.....my hips are screaming! My right hip is gone, There "I know" is no cartilege left in it at all and I need a hip replacement.
My right shoulder hurts so bad I can't even move my right arm or lift it whatsoever. Scans of my shoulder show only mild degeneration of the joint. So why all the pain???? 
My back hurts so bad I can't stand up straight, sit for more than 10 minutes without pain or stand for longer than 20. Add to that, the fact that I have numbness from my left hip, halfway down my thigh to my knee. My arches of both my feet hurt so bad I can't stand on them for more than a few minutes at a time. Now, the bones in the top of my right foot are starting to swell up on me and they hurt.
I have temporal headaches that may or may not be caused by the lesions in my brain.
My throat burns constantly from the breakthrough acid reflux I have that is not being controlled by either of the TWO PPI's I'm taking.
My teeth hurt and are rotting due to lack of saliva, my eyes hurt from lack of tears and I cannot read well at all anymore without my glasses thanks to the Plaquenil.
 I have sores in my nose, in my mouth and in my ears. Not to mention the sores all over my scalp that you cannot see thanks to my hair.
My skin flakes on my face and head, but it's not dry flakes, it's sticky, plaque like scales that seep when they are scratched off. They itch and burn!
I'm sure that much of this is realative to the medications I am taking, but I don't know what else to do.
I am only 39 years old and I need to live for my kids because I am all they have left in the world.
I cannot walk around with my kids anymore, I had myself all psyched up to go to Halloween Haunt with my boys and guess what!? I had to go lay in the van while they went through the ghost houses. There were no wheelchairs close to where I was and I didn't want to be the "party pooper" so I walked back to the car alone and laid there and cried silently. Seems I do that a lot lately. I just don't know how much more of this I can take. I have had to take pain meds lately and I cannot wake up in the morning when I do. There has got to be a better way. It's dangerous for me to sit for long but I can't walk! What am I supposed to do?
It hurts so bad.
~H
2163

Can I please get a break?!

Today was my rheumatology appt. My doctor increased my Imuran and then sent me off to the hospital for an Xray of my hips. This was because of the excruciating pain I've had in my hips and shoulder lately. Unfortunately, through this I learned that I have Osteoarthritis in my hips and my right hip took the brunt of the damage. I have no cartilege left between the ball joint and the socket. I am grinding bone on bone. Now...I will need a hip replacement. Not cool for a 39 year old mom of young children. Boy.....someone really wants to take me out!

So boned.........

SHORT AND SWEET

Couldn't take it anymore. Those who know me, know that I don't take steroids. I gave in on Thursday. I have never in my life experienced this kind of pain. RIGHT ARM COMPLETELY USELESS, dragging my right leg because my hip won't allow me to lift it. The weight of my arm and leg is just too much for the joints to even support. I was in hysterics! I was crying uncontrollably and begged Joe to drive me to my rheumatologist's office. When we got there we learned that no doctors were in that day and I just broke down crying to where the office lady took me in the back and gave me a steroid injection. (She gave me double the normal dose because she said I was in such bad shape!) Anyway....took the edge off but i'm still destroyed. If I wear a sling to support my right arm, then it has to drape across the other arm/shoulder which will annoy the nerves and muscles in that shoulder and then I will have issues with both arms! I can't use crutches or a walker to help with my hip cause I can't bear any weight with my right arm. I am so screwed! Why with all the meds am I getting worse????? God help me!

~Heidi

Unbelievable response from my G.P.

It's bad enough having to go through this horrible pain day in and day out. But to have a Doctor who acts like he doesn't really believe that what's happening to you is real, and then not return calls and constantly push out and reschedule my appts. it's just wearing on my spirit and draining my heart of any fight that's left in me.
I scheduled this appt. with him months ago, and his office has called and rescheduled it four times! This last time, they had no dates available for a reschedule! Now what right? So I call and leave a voicemail specifically for him (on his personal voicemail) explaining that I had been in the hospital and that the ER doctor told me that my clot potential was high and that I needed to get in to see him right away. I explained that it's extremely troublesome to try to schedule an emergency appt with him and not get to see him for months. I could be dead by the time I get in to see him for crying out loud!!
I don't hear from him for weeks! Then, when he does call me back, it's at 10:45 pm and he goes into a rant about how I need to stop or "slow down" on all the sports and "athletic teams" I have been involved with all summer. WTH??? I said WHAT ARE YOU TALKING ABOUT!? DO YOU EVEN KNOW WHO YOU ARE TALKING TO? He continued that I had told him I was very athletic yada yada yada. Oh my gosh! Really? I would NEVER have told you that because that would be a LIE! He asked me what did I go to the hospital for and I told him I was having trouble breathing and that the pain in my right arm was excruciating so they thought I had another P.E. which thank God I didn't HOWEVER, my D-dimer test was high. He then said "Oh, so we should do an X-ray of your shoulder then since you're having numbness and tingling. HUH??? I never said I had numbness and tingling! I told him, I am NOT having numbness and tingling, just sheer unrelenting pain! Sharp deep pain that's completely debilitating. I asked him (Does an X-ray show muscles and tendons?) He said no. So I said "Then what's the point of the X-ray? Obviously I don't have broken bones. I didn't injure myself.....so we should probably consider an MRI or ultrasound to look at the tissue and muscle etc. right?" He said "Oh yeah...that's what I meant, we should do an MRI to check the muscles and tendons because this seems like an orthopedic thing you've got going on here." UGH! Why does it seem like he got his MD from a cereal box???? I just wish that I had a Doctor who actually gave a crap about me! One who was concerned and wanted to help me to get better. Partner with me and my other specialists to HELP ME! I can't do this all by myself! Why can I not get an appointment with my doctor when I have an emergency? This is rediculous! I guarantee you that he is the sole reason I am having issue with Social Security too! He's probably told them that I compete in triathalons and decathalons and stuff! It's like he has NO IDEA who I am! I told him I need a referral for the pulmonologist and the MRI for my shoulder. He said I'd have it to pick up on Tuesday. We shall see huh? I will be calling the site manager of the clinic Mrs. Clark and arranging an appt. to meet with her because she was supposed to have changed my G.P. way back when I had my P.E. and he screwed up on my blood thinners and results of my PT INR. I need answers!
~Heidi

Basic "forget about it's"

I am now at the point where regular, run of the mill activities such as folding laundry, pushing a grocery cart, combing or washing my hair or cooking is almost impossible. THE PAIN IN MY SHOULDER IS SO HORRIFIC I LITERALLY WOULDN'T MIND HACKING IT OFF! I wish I knew why it was so bad. I have been on immunosupressants and anti-inflammatories far too long to allow for this kind of breakthrough pain. I've iced it for two days now and NOTHING!!! Not to mention the added 40mg a day in prednisone for 5 days after my release from the hospital just over a week ago. That alone should have at least taken the proverbial "edge off" of the pain. But no. I can't do AYTHING! I am right handed...this is completely debilitating! What else is there? Now, I'm noticing that deep right hip pain is returning and causing problems with my ability to sit, stand and walk. God just let them find the cure for this please!!!

A whole new level of activity.

I went to the E.R. a few days ago because as I walked into Walmart to buy some thread, I became short of breath and had an almost panicked feeling that each breath would be the last. The air was thick, my chest heavy and I began to get dizzy. I left Walmart and sat in my car for a few before taking myself to the E.R. when I felt it was safe to do so. When being evaluated by the ER dept triage nurse, he asked if  had any other pain at which point I realized YES...yes I do. I had pain in the left side of my chest a few days earlier and had been having severe pain in my right shoulder for three days straight which was now unbearable. Well, this being the Hospital that admitted me with my P.E. a year ago June, they were taking no chances and he said "I'm really concerned that you may have another clot my dear." So they took me straight back, inserted a slurpee straw sized I.V. into my arm and took my blood for a D-dimer test. Then it was off to the CT machine for me. In a nutshell, they found no clots in my lungs (Thank you God!) but, my D-dimer came back elevated .

D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low. In addition, it is used in the diagnosis of the blood disorder disseminated intravascular coagulation.^[1]

D-dimers are not normally present in human blood plasma, except when the coagulation system has been activated, for instance because of the presence of thrombosis or disseminated intravascular coagulation. The D-dimer assay depends on the binding of a monoclonal antibody to a particular epitope on the D-dimer fragment.

In short, the ER doc said that he'd almost put money on me having "that clotting condition" that Lupus Patients often develope. GREAT! My rheumy tested me for APS and I was negative! But is that th same thing?

They gave me a horses dose of steroid injection, a breathing treatment, a shot of dilaudid for my shoulder pain and that was that. They sent me home with a prescription of 5 days taper of prednisone and Oxycodone so I may sleep. Yeah right!  Well, if my shoulder pain had been related to my inflammatory condition whatsoever, the steroids or the many anti-inflammatory drugs I am on (Imuran, Plaquenil etc) would have knocked out the pain and helped me function. BUT...I have no use of my arm at all. It hurts so bad you can't even touch it! Now, here I sit at 1:00 am unable to sleep with a fever of 99.4 degrees. My breathing is still not good though my oxygen sat showed normal (which I totally don't understand) and now I'm running a fever? Hmmm....Autoimmune fever should've been knocked out by the prednisone as well. IDK. But I've got a real bad feeling about this. I'm at the mercy of the doctors and that terrifies me!

Imuran is not working but damaging my liver I guess.....

So, I guess soon enough it will be back to the drawing board. I received my lab results today from my July 5th draw and once again (Just like with the Methotrexate,) my ALT (SGPT) or "liver enzymes" are HIGH, Billirubin is lowest side of range and SGOT is highest side of range. When discussing the next step with my rheumy last, he said the next would be Cytoxin infusions. Nice :(  So, I have to call him tomorrow morning to get a stat lab for re-check and discuss future plans I guess. I was already increased due to ineffectiveness, and now i'm in excrutiating pain all over...(back, hips, tail bone, collar bone, shoulders, neck, head, hands, feet) and I can't sleep! In short, I feel like i've been hit by a Mac truck.  Not happy. Tired of trial and error all the time. Oh...and today is my birthday......yippeee :'(

~Heidi