World Lupus Day/Month May 2017!

 

Lupus Awareness Month 2017

Lupus is more pervasive and severe than people think, and has a devastating impact that the public doesn't realize. In fact, research shows that a staggering two-thirds of the public knows little or nothing about lupus. You can help change that.
Join the nationwide effort to pump up the purple this May to raise awareness and funds for lupus research and education programs. Rally support from your
friends and family and get started today!

http://www.lupusawarenessmonth.org/index.html

Take Action on the American Health Care Act, More Work Needs to be Done!

 

 

WE MUST TAKE ACTION FOR ALL OF US IN REGARD TO THE GOVERNMENT AND THE HEALTHCARE ACT!!!

Update on my Cervical Neck Surgery..... news is frightening honestly!

My visit went "okay" on my follow up 11 days after the neck surgery. What I found out though this HAD TO WORK AND IT NEEDS TO HEAL AND STAY WORKING! I don't have much bone to even work with anymore... he took out all of the hardware, and one of my other surgery levels had completely fused and was awesome. It was "between" the two the were new and then one that never quite healed right from the 2012 surgery. It is amazing to look at the X-rays and wonder how the heck they get all of that in there, and make it work. I am in the HARD COLLAR THOUGH another 5 WEEKS! 

Then i go to a soft collar, but he told me frankly we needed to take every precaution we could to make sure this does get the job done... my lumbar spine he said, and he was upset I did not tell him months back about how bad it had gotten, but my neck after seeing NO SPACE LITERALLY between two of the discs, and how he managed to put almost 2 1/2 inches of space and then remove a huge bone spur that was also in that area... but lumbar surgery could be done in about 9 weeks if it stays bad or gets worse. He said I could have lower surgery even a bit earlier as long as my neck progresses .... anyway, I then I think put myself in a "tension" after hearing him and then I think I am having muscle spasms on the left side where it is so bad, plus just stressed myself out so 

I didn't sleep again as well as I should have and was up "early" but at least not at 2AM and was actually asleep until about 3:30AM before I finally got up. I don't want to sit and type much. Right now although the pain and burning etc has really gone down so much so quickly, I don't want to chance i and I don't want to run into messing something up.... so that is my report... once I get the operative report, I will have to post some of that so you can hear just how much he had to do in orde to have enough to work with this time...

LUPUS Awareness MONTH May 2017!!!! LOTS you can do to get message through to Congress, to Walk, Advocacy from Home and Much More!

bit.ly/WalkwithUs #WalkwithUs

http://www.lupusresearch.org/advocacy/legislative-action-center.html#/takeaction

Use the Lupus Research Alliance Legislative Action Center to tell legislators why we need greater funding for scientific research at the National Institutes for Health and allocations to continue a dedicated lupus research program at the Department of Defense. Equally important is to convey why we must make sure that any new healthcare policy allows all people with this challenging disease to get the critical medical care they need. And to be most effective, share your own story – share how lupus affects you! bit.ly/LupusLAC

 

 

Cervical Neck surgery OVER BUT COMPLICATED, PAINFUL AND HARD COLLAR DRIVING ME NUTS!!!

I am home, thank goodness. Got home yesterday afternoon about 4:00PM... I thought I was staying another night... the surgery was COMPLICATED AND TOOK 3 HOURS!! Things were MUCH WORSE than even my surgeon thought. Was should have been a 1 or 2 level surgery, turned into a full 3 level surgery, plus talk about PAIN!!! MY entire chest, arms, head, neck, even my left ear HURT SO BADLY, they really could not give me enough meds to get it calmed down. 

My throat was so sore I could not even swallow a popcicle, so of course I stayed Thursday night. I found out yesterday morning we had waited WAY too LONG doing the surgery, thus the complications. My neck was over 21/2 INCHES SHORTER than it should have been, so he had to literally STRETCH MY CERVICAL SPINE ENOUGH to get those over 2 inches BACK AND put in the discs, and get the cage in, and then I had a BONE SPUR THE SIZE OF 2 INCHES, that he removed, and used it in the cage for my bone to hopefully regenerate itself. Needless to say I am miserable. This very HARD COLLAR, ALONG WITH THE STRETCHING, feels like someone put my head in a vise and literally PULLED MY HEAD AND NECK UP ALMOST 3 INCHES. Jason even said he could tell by looking how much straighter and longer my neck was yesterday. 

Anyway, I pray this all heals well, and never will I WAIT AGAIN, to have something like that done... of course my situation was crazy last year between Mom being so ill, then passing away so quickly, then between after the funeral and paperwork, my twisting both ankles, and then falling and fracturing my hip in December none of which was "my fault" for not having surgery much sooner... honestly the surgery should have been done December a year ago, but that is when my pain pump went out, and I had to have it replaced on the 29th of December 2015, thus about January 10th is when Mom then was in such a fast moving Dementia, I could not have surgery due to that, and the her passing away in June, I severely sprained both ankles the right one horribly worse, which my doctors feel contributed to me tripping and breaking my hip.... 

my lower back honestly has been getting worse now and really had been bad before the neck issues came up... so I feel I may face lower back surgery later in the year, especially if we see that things are worse, as I fear they maybe.... anyway, I am home, and now they have adjusted my pain meds, where I am not in so much pain, just MISERABLE FROM THIS DAMNED HARD ITCHING COLLAR!!!! I hope this does the trick, and now I get better as far as the cervical spine.... more later, I can't sit here for long and type at my desk, but I may be able to use my laptop soon on the sofa.... Hugs to all, Rhia