Hello everyone! How's it?

Thanks for the update and hello. As far as I'm concerned, details are not a bore.

hi DT:)

A.S. Ankylosing Spondylitis...is the latest culprit added to the Lupus, Rheumatoid Syndrome, and Fibro. Yep, it's just a never ending slew of Auto-immunity...EEK

It is a disease that takes the neck and spine and protracts it into a hump or lump, thus you have this horrid pain in the neck and back. I feel like i have to hold up my head with my hands most days. It will not move fast, but it has begun and so far is part of an old injury that flared up with the RA. I had a very bad head on collision when I was 16 and hurt my neck badly...over the years learning to compensate being so young, not wanting my throat cut from ear to ear for surgery....Now I regret that decision a little but still think it was better that way.

These auto-immune diseases require a lot of medication that is so expensive you would need 20 jobs to cover it...So, because of that I have not had the necessary meds, still waiting on approval of help from the drug companies isn't helping, and to boot the threats from the FDA on specific pain killers that I would be wanting death soon than to be without, and the ever changing scape of our health care reform problems, my doctors are not making very wise choices at the moment...I think they are really afraid to do anything right now...

HOWEVER.........I do have some good news about that!

My Rheumatologist announced to me yesterday that his uninsured, and self-pay patients will now be able to see him on every Monday at the Charity hospital that I HATE, but will love him being there, as this means my extremely expensive overdo blood work will get done, and the MRI will get done and quite possibly a rush on the 23,000 an infusion Remicade that would put me into Remission with them all...
So that's the RUB sweetie! But, ya'll know me! I am mysteriously able in some way to endure these things and I guess is just my faith and grounding about knowing that GOD loves me and is good to me even in the face of adversity!

:)

How are you D thraco? Things going well for you and your lovely lady? Still thinking about all your beautiful photo's from the islands...Yummy stuff! :)

Yikes...

Don't really know what else to say:o

Glad you're still around.

yikes! get better Thorn!!!!

I can relate. I've got Fibromyalgia, two herniated discs in my neck, and a protruding disc in my low back, causing sciatica. I had chronic fatigue immune deficiency syndrome (CFIDS) for over 15 years, but beat that with Ampligen treatments. I'm currently on Hydromorphone for the pain. It's stong and effective, and seems to be less addictive than some of the stuff I've been on. It's a lot more effective than Vicodin and Darvocet, which are the strongest meds that my primary doctor would give me. I had to get a good pain management doctor. He's not afraid to prescribe the stuff that the FDA requires triplicate prescriptions, and other reporting for. If you don't have a pain management doc, you should find one. Also, with as much as you have going on, you might want to consider making just one doctor your prescriber/point-man. In my case, it's my pain doc. It's safer that way, because it prevents being prescribed drugs with interaction problems.

Hang in there. I hope some of this helps. I'll pray for you. hrb

I tried to PM you Thorn but your inbox is full. Time to clean house, girl. So I'll post it here.

It's good to see you pop in here on the board. I'm sorry to hear about your new addition.

I recently found a friend from way back and it turns out that she experienced a great deal of health issues not completely unlike yours. She's probably not totally in the clear, so to speak, but to see her you'd never know. She's is extremely active and very energetic.

Western medicine was able to do nothing for her so she sought out alternatives. I'm wondering if you have tried any of this type of thing?

I could probably put you in touch with her to bounce some ideas if you'd like. She's very knowledgeable in dietary, herbal and other forms of treatment.

Couldn't hurt right? Let me know and take care in the meantime.

Hey Matt...:) It's cool! It's hard to say anything about such things sometimes..I just know you are my real friend and that is all I need from you dear!..You ROCK!

Hey MOC....Thank you and you too, I know are a true friend and I am grateful for you all here!..:)

Hey there HRB and thank you for that Information...I had pain management for Fibro about 5 years ago and was on Methadose and Mepergan for about 10 months and then it started to build up in my system and caused me to be in ICU for about five days with breathing difficulties..Not an uncommon thing in some people with strong narcotics..I have had Hydromorphone before too. They are truly worried I will forever be on short-acting pain meds because I can't seem to handle long-acting ones for long without breathing or heart disturbances...It's my past full of allergies and reactions to all manner of medications...Also I have no health insurance anymore..Another reason I can't go see PM docs...They won't take me! SIGH....I'll have you also in my prayers....Thanks again!

J RUG....Hey sweet thing! I know what you mean about naturopathic stuff...I was going to a naturopath when all this hit me and his suggestion for me was to get my first year of RA/Fibro/LUPUS drugs to stabilize the disease..They are called DMARDS. Disease Modifying drugs....Then I can slowly begin the journey to add more and more supplementation to my world...I currently take milk thistle for liver rejunvination and Omega (fish oil) complex for inflammation and heart function...But, you are more than welcomed to give her my email address..We may stumble on to new things together and I love that idea!..bekahmorgan@gmail.com

Any of you that want to, that is my new email addy and I'm happy for you to have it and send what You'd like..

I am going to clean out that mail box now..LOL..Thanks for putting that into my view JR!..:)

Same here so I left a comment on your myspace page. Wanted to thank you for introducing me to the Texas Hippie Coalition! I ordered their CD a couple weeks ago. You can guess my favorite tune off of it!

Girl, it's just one thing and then something else, ain't it? :(

What are we gonna do with ya'???

HEY...It's my favorite FENDER....FM...:)

Sorry about the full inbox..I finally cleaned it out a little..I am gonna get it good and done today...

Yep, THC is the BOMB! I know you love POandMad about it...Dude that is the best song to come out in years in the tradition of a Pantera type band...Very cool guys..Randy Cooper the Lead Guitarist is an awesome human being..He does all this great metal and on the side has prayer with people....I love his style!

I can't wait to see how well they do nationwide......Really been promoting them from my end!

okay FM, what are we gonna do with me?...Hum! Well that is a great question...I just lie in wait of answers, they are slow in coming, but I have every ounce of faith that I will get better after the ONE year mark on this...It takes a long time to find the combination of meds that work on Auto-immune disorders and once we do, I'll be in remission...Many are after a year or two...Let's pray that happens for me as well!..

HUGS..
BEKAH

We are great, thanks for asking. We are sticking to our plan...save save save. Because this time in 2011, we'll be movoing to Oahu. That's the plan anyway, we'll see if life agrees to that. haha.

Musically, the band called it a day a couple months ago. I put out a solo Acoustic CD and got a great review. And at this point I am looking for a band as a screamer. Have a couple irons in the fire, but no actual auditions yet.

If you want to hear the acosutic stuff, it's on myspace: http://www.myspace.com/brianfanninbrian . Do add me as a friend. I'm happy to mail you a copy of the printed CD if you are interested. Just pm me your addy.

Again, great to see you on the board again. We can never have too many good people.

Awesome .....I'm heading over to myspace in a bit then..Can't wait to hear! You have a great voice and talent! Good to know you have a good plan for your future too...That's what you younguns need to remember....This is the one life and you get that shot..doing it right, or well makes all the difference..Proud of you both!..HUGS:)

LOL...I'll be 37 next week. The 'younguns' comment made me smile.:D

Hey Thorn,

so good to hear from you. I can elate to some of what you are going through. Being let go from work, since my MS put me as a liability to the company, they no longer needed me. Pain is 24/7......Aleve is like eating candy....really doesn't do naything cept make me bleed...oh well....'
nufff bout me....

Glad your still checking in.....
I pop on every now and then...hard to do when you can't hardly feel your fingers....

take care, your in my prayers....

sws

HEY SW,,,,,,,,,,,,,,I have been wondering how you were as well! I know you have to get sick of that just like I do. It's never ending, but we still manage to kick around a little...:)

Aleve is just not good enough for that kind of pain...I am on oxycodone at this point, and without it NIGHTMARE to live, however, I am out of any pain meds and my scripts are well over thirty days and for some reason the doctor is lagging on help...I've been a week or more without and I am about to bite my fingers off and cut off my head from my spinal pain...I always tell them, step on a few rusty nails up to the bone and tell me what you'd like me to give you for the pain...Point was taken!..LOL

Hang in there my friend...We will overcome and if not, we will get to that place where things are easier and not quite so hard......

Glad to see you posted! Take care SWS!...

BEKAH:)