Latest update

So here I am once again. Again I am sorry for the space of time between posts but it has been quite a busy few months. I am currently struggling with my vision very much, so bear with me as the font here is just so tiny that it is hard to see.
I had my appointment with my neurologist a few days ago. I have learned that I have a demyelinating disease of the brain. As usual, I learned this by reading my report, not from the mouth of my doctor (which really is no surprise believe it or not) I Googled it to see exactly what it was. I will copy and paste my finding below....

A demyelinating disease is any condition that results in damage to the protective covering (myelin sheath) that surrounds nerve fibers in your brain and spinal cord. When the myelin sheath is damaged, nerve impulses slow or even stop, causing neurological problems.

Multiple sclerosisMultiple sclerosis (MS) is the most common demyelinating disease. In this disorder, your immune system attacks the myelin sheath or the cells that produce and maintain it. This causes inflammation and injury to the sheath and ultimately to the nerve fibers that it surrounds, and may result in multiple areas of scarring (sclerosis).

Other causesOther types of demyelinating disease and their causes include:

• Optic neuritis — inflammation of the optic nerve in one or both eyes
• Devic disease (neuromyelitis optica) — inflammation of the optic nerve and spinal cord
• Transverse myelitis — inflammation of the spinal cord
• Acute disseminated encephalomyelitis — inflammation of the brain and spinal cord
• Adrenoleukodystrophy and adrenomyeloneuropathy — rare, inherited metabolic disorders

MS and other demyelinating diseases may result in vision or hearing loss, headache, seizures, muscle spasms and weakness, loss of coordination, paralysis, and loss of sensation.
TreatmentNo cures exist for demyelinating diseases and their progression, and symptoms are different for everyone. Getting treatment early is important. Treatment focuses on:

• Minimizing the effects of the attacks
• Modifying the course of the disease
• Managing the symptoms

A variety of drug therapies are recommended depending on your specific disorder. These may include medications that decrease the frequency of new lesion formation. Strategies to treat symptoms include physical therapy, muscle relaxing drugs, and medications to reduce pain and fatigue. Talk with your doctor about the best course of treatment for your specific disorder.

Quite honestly....these things actually make sense to me.

I had my appointment today with my general practitioner and will be receiving the following referrals
-Opthamologist
-Pulmonologist
-Podiatrist
-Physical Therapist
_Ear Nose Throat

I have FINALLY agreed to a prescription for pain to help me sleep at night.

My appointment with my rheumatologist is next month.

Anyway....that's all I've got. I hope you are enjoying your holiday season.
PEACE :)
~Heidi

DJ's rheumatology appt.

I almost forgot, my little guy had his rheumatology appt. recently. I was a little shocked to hear the doctor say that since he does not have an elevated ANA then he doesn't have Lupus. I thought we were beyond that myth. My mother did not have an elevated ANA in the early years, nor did I. To this day, my ANA has jumped less than a handful of times but there is no doubt about my diagnosis. I told her this, she said our family is a (strange soup) of autoimmune activity and that with that in mind, she wasn't completely ruling it out. She said she just wasn't concerned at this time. But she did say she felt he should definately continue his follow up with his GI doctor. We will continue our photo journal of his symptoms as well, because it always seems to be that (like with the auto mechanic) his body is not doing what we made the appt for by the time we get to the appt. LOL. He seems a bit better lately with not throwing up at the smell of food etc. We eliminated artificial sweeteners from his diet, and fast food. (At least I did.) He's eating healthy at the Mama's house :) I am hating this (salmonella) issue with the chicken of the world lately!! I have had to turn to turkey lately because I am not willing to take the chance with the chicken! Ugh! It's hard to be healthy sometimes. Anyway....have a great day and we will talk at you again soon.

Peace, love and gentle hugs,
~Heidi & DJ

Seems run of the mill lately....

Good afternoon friends. I have been quite busy lately trying to prepare for the Lupus Walk and raise money for the cause, so I apologize for not posting in a while. Things are for the most part, the same. I live everyday with chronic pain in my right shoulder and right hip. The recent issue that has started up again is the back pain and this morning, I woke up with painful blisters all over the roof of my mouth again. It's been quite a while since I've had that symptom. I have had some stress lately which I know for a fact has a lot to do with the severity of my symptoms, so I've been trying to turn off the TV for hours a day and just soak in the peace and quiet (while the kids are a school.) Minimizing the stimuli in the room seems to help a little. It doesn't do anything for the shoulder and hip pain though. I have plantar fasciitis also and that causes even more difficulty walking. I can bear weight for maybe 20-25 minutes at a time without severe pain. But when the pain starts, there's no working up to it, it's bad from the get go! My shoulder pain seems to stretch down to my inner elbow bend now, and it also seems to radiate through my collar bone. Not cool....that's just all I need. I am a bit worried that I may not make the the entire walk this year. I am considering renting a wheelchair for that day. I will push it until I cannot walk anymore and then I will be pushed in it from there. These problems have dictated my activities for a while. I have missed out on the Halloween Haunts and the ghost houses and such with the kids this year. I don't believe I will be Trick-or-Treating this year either :(  It sucks because I still have a young child (7 yrs) who's life revolves around these activities. I have not been able to be a part of his life more often than not. I guess that's all for now, I will try and keep up the posting more often.

Gentle hugs,
~Heidi

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