Monday, June 15, 2015

I am here still with the Flares, and more... Lupus. RA, Xeljanz, insurance, and Chronic Illnesses and Pain

 I 've added 3 photo's of what the side on my right knee looks like now.

I thought I should post, so everyone would not think I had up and disappeared! LOL!!! I would imagine "some" people could care less if I disappeared forever and to eternity! ;)  But, that is another very LONG story for another TIME when I feel I can "blog" a bit more as far as my own situation goes. For now, first of all, I am thrilled to be helping WEGO on several projects. I also am of course continuing my Platinum Ambassador activism. I also of course also post, blog, and so on about other chronic illnesses, and chronic pain. My pain level has been out the roof! Yet, I realize that others are either as bad as I am, OR possibly worse. I have been just as busy as a bee with things here at home. From taking down old desks, cleaning closets and dresser drawers, sanding on the inside windows in the spare room... to getting rid of LOADS of things that either have not been used in eons, never will be, are probably to old to use, and things that are generally worn out. I HATE a home full of "stuff" that is just that, stuff. So, I am pairing down a great deal of everything in each and every nook and cranny of this house. I am also in the process of finding my Mom an Orthopedic doctor. She has got to have her hip seen about. It is to the point that even Mobic, and it is a strong NSAID is not helping her. She is "still limping that leg and hip. So, it is more than time to have it X-rayed and get a specialist to either give her an injection into that hip, or something needs to be done. Of course my own issues with my hips, both, and lower back are also nuts. I had to POSTPONE the discograph again due to these flares and the "immune" situation for now, especially with prednisone... thus I am GOING to have that done a week from today on the 22nd... and I hope this time I can get there, and get it over with. I am ready (well no one is ever ready) to discuss "what" needs to be done, not done, and how to deal with the ordeal. I have to get a huge amount of blood work done, especially the "TB Gold" test, before my insurance will think about covering Xeljanz. So, I will go in later in the week to get that done. Then if the insurance will okay it, I will be trying the Xeljanz for the RA etc. I know I had a couple other things to "say" but now I cannot remember them... alas brain fog... ;)

Saturday, June 13, 2015

Paul Gileno speaks out for ALL of us with Disabilities!!!! Now it is OUR Turn to tell Rand Paul how we feel about his comments!

 

 

U.S. Pain Foundation President Speaks Out Against Senator Rand Paul's Disability Comments
 





http://myemail.constantcontact.com/Founder---President-Paul-Gileno-Defends-those-with-Disabilities.html?soid=1103157487426&aid=A6wnyF06XsU

Now it is OUR Turn! Open Your mind and mouth, and/or email hands and type how you feel about these remarks. 



We must stand up not just for ourselves but ALL that suffer disabilities.


#USPain


Friday, June 12, 2015

RA News, Vets and Chronic Pain, & more headlines of the Medical Issues of Autoimmune, Chronic Pain and Chronic Illnesses

http://www.medpagetoday.com/Washington-Watch/Washington-Watch/52086?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Vets and Chronic Pain above...




http://www.medpagetoday.com/MeetingCoverage/EULAR/52084?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Phase III in New RA Medication sees great results...

Baricitinib Shines in Phase III for RA above...



http://www.medpagetoday.com/Rheumatology/Arthritis/52082?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Pain Sensitivity Spikes in OA Patients With Sleep Problems - link above...



Round Two of Bad Weather (I can tell from my severe pain), Lupus, RA, Flares, MORE unbearable pain, Discographs, Ankylosing Spondylitis & More

Looks like Round 2 of the BAD Weather days for my area around the DFW Metroplex, including Ellis County. It is supposed to start out as rain possibly today, but then turn back into Thunderstorms for several days through the weekend and more... so we shall see. I am supposed to go for that discograph on Monday, But, due to having this corticosteroid injection and having both I think a Lupus and RA flare at the same time, and now I am on a step down large dose of Prednisone for about 7 days or so. I am not sure they will even consider doing the procedure. Since they have to inject dye into my spine, and we run the risk of infection even with antibiotics they will give me IV during the procedure, my immune system is not probably really ready to handle it. I am calling them today and talking to them about it before I even try to go up to Dallas early Monday morning. No use in my son nor I making that trip only to have them tell me I can't have it done right now. Also I did find out my PCP will do all of the blood work my Rheumy wants me to have. I'll go in next week and have it and what my PCP wants done all at the same time. I am sure the lab tech will be thrilled! He cringes when he sees me coming. I am such a horrible stick, due to rolling veins, tiny veins, the "blow" on them, they have to "chase them down, anyway... he just looks like he wants to cry as I walk in the door. But, it all has to be done, thus he will have to stick as much as it takes to get the blood needed for the tests. They are also checking for that "marker" for AS (ankylosing spondylitis) HLA-B27... a "genetic marker" that sometimes shows with this autoimmune disorder. From what I read, lots of people can have the "marker" yet never get the AI. Then many can have AS, yet the marker does not show. Yet, my latest symptoms, with the very severe lower lumbar and sacral L-5/S-1 back pain, down into my hips, that almost keeps me from being able to sit at my computer for very long at a time... I just have all of the hallmark symptoms of the disease. Now it may show I have a compression fracture due to the osteoporosis, the reason for this discograph... I don't care what it is, fix it so I can go back to somewhat of whatever "normal" in my life is anymore. Now, that I am basically here with me and the pups, I have LOTS of stuff I want to do at the house.... but in the pain I've been in, I just am almost in tears by the time I sit here for 10 minutes... So, I do need the discograph done, but even my pain doctor, thinks it is a waste of time and money.. it appears I have something that needs to be fixed in that area, so even if we find the AS is present, then I still will probably be having lower surgery on those places on my very lower spine... My hips hurt so badly, even this morning by 3 am I was awake from pain so severe I wanted to scream.... so let's hope they find something and can do something about it....

As you can see again I'm going through hell with the AI issues. Some days just trying to ignore the pain, the inflammation, stiffness, and go ahead with all of my house projects work... and then others the Rheumatoid Arthritis, the Lupus, and now possibly Ankylosing Spondylitis, and more just about get the best of me. I am attaching a couple of links about AS, for those who want to know more, as well as about the discograph... and so forth. 

I need to try and get to work on my 3rd book on my own history and river of "fun" with Autoimmune Illnesses, and I intend to soon, if I can get to where I can sit long enough to do so. I have almost finished reading Stephen King's book "On Writing". He has some incredible ideas, and of course many I already know. I need a complete "block of time" even if that means weeks, to just write! Nothing else, if I can help it, but quiet time, where I can "bust out" the rest of the writing, then I can begin editing, proofing and so forth. I have no change but to do it all myself. I cannot afford to have a professional help with it, and I did a pretty darn good job with my 1st two books.

This 3rd on of course is so much different. It will be a compilation of my blog posts, my writing about these AI illnesses, and all of the other complications that go along with them... and my personal story, both glory and Lord awful times when I thought not being on this Earth would be better than all I've endured over this past many years... especially since 2005 forward. 

I know I need to get it out there for others to read, and hopefully show that they too can share their problems... people out there do care, even when you think they don't. 

So, as the days go by, keep me in your thoughts... lots of stuff going on with me right now. Some I cannot speak about much until later when things are more settled. 

As time goes on, I will be able to give more details about my life, and what is, is not, and what will go on, for my future. Of course, as I've found out through personal experience, as well as through the experiences of some of my friends especially on Facebook, we are never "guaranteed", what the future will hold. I was thinking about that just a bit ago while I was in the kitchen. In 2010, on Feb. 2nd, which would have been my Dad's birthday, I went to the ER via ambulance, sicker than I can remember... they thought it was my Gallbladder. Well, it came out, and I appeared to be getting better. Yet, within 10 hours or so, I was so ill, they feared I may not pull through. They rushed me via ambulance to Methodist in Dallas, where I stayed 6 weeks. They told us I had a "collapsed" bile duct, that my liver had a nick on it, from the surgery and it was pouring "poison" into my abdomen. I had tubes of stuff coming out of me for weeks and weeks. I didn't even get them out until much later after I came home. Honestly, I don't think they really ever knew what was wrong exactly. I was told by all of my physicians, including my PCP, they thought I would frankly, die... although I am still here, but it was a scary, very long 4 months or even more before I felt like I truly may live. I could not eat nor drink for something like 6 weeks. They fed me via IV the entire time... so we never know... a guy I know that was the "picture of health" in his mid 40's, was found by his wife on the floor when she got home from errands. He had a massive brain bleed. Turned out after having to remove a part of his skull to relieve the pressure, he had had a stroke... and maybe unable to move on his entire right side the rest of his life.

I just read where a friend on Facebook who has "RSD", and I don't know a lot about it, although I do know some... she is very young, and facing having her arm amputated today! It appears where blood may not get to certain areas due to nerve issues, thus it appears like she has the massive sores like an infection on her lower arm. So, they are taking her arm off partially it appears down below the elbow.

Another friend here I went to school with is battling cancer. She had it when we were still in high school! And she kicked its butt. Now, after over 30 plus years, it is back, and she is fighting daily with pain, from a tumor that is pressing on her sciatic nerve. 

That is just a few I can think of... My Dad basically went like of like that... had a knee replacement, and something just went terribly wrong... and he passed away in the hospital.... so we never know, from moment to moment what may happen...


The accident Jim had last year March 2014, who would have known an 18 wheel tractor trailer would have ran him over and now he is partially paralized from about his mid-chest down. 

Those again are just a few that I can think of now, and there are so many more of us that either have suffered like that, or know of dear family or friends, that within a breaths space... have gone through horrid and almost unbelievable health experiences. 


RSD - http://rsds.org/



Ankylosing Spondylitis -   (AS)
http://www.spondylitis.org/about/as.aspx




 

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Sunday, June 7, 2015

Osteoporosis And My "Severe" Range Numbers...

I haven't been able to sit and write much. I was gone for a couple of days for a "girls get away" trip with my Mom. We went to OK, to the Winstar and just had an incredible time!

But, with the issues I've had with my very lower spine and hips, the sitting really did me in. I've spent the last two days trying to recuperate, and I am already having massive issues with severe pain, burning, even all the way down into my heels at times. A CT scan shows some issues at L-5/S-1 & 2. But, it is really not able to tell us just how badly it is. I suspect a probable compression fracture or maybe 2 due to the severity of my osteoporosis. It was something I never really thought much about until I had my first bone scan about 3 years ago. I was totally blown away by finding out I had not just the disease, but SEVERE osteoporosis.

I began doing research to find out, due to the RA, Lupus, Prednisone for the illnesses, my tiny bone structure, and several other things all contribute to my having this disease. My hips are totally with it, as well as my "femoral neck" and my lower lumber spine. Thus I feel that is where the compression fracture or fractures could be. Due to having a internal pain pump I can't have an MRI. But, we already know, I have had more than one time of having a "scan", then going on with surgery only to find out the surgery really showed the severity of my problems. My joints are just being destroyed.

Anyway, I had not wrote but a bit about it, so I decided to at least post this, along with this URL:

http://en.wikipedia.org/wiki/Osteoporosis

And I will continue later... ;)