Rheumatologist visit went well, start Enbrel when insurance approves it, still pissed at Congress, dealing with severe pain in many joints & trying to get the word out for everyone to write Congress & let them know about the business of insurance, cutting "entitlements" and more...

I had a very "good" visit with my PA yesterday at my Rheumatologist office. She FINALLY BELIEVED AND SAW JUST HOW SEVERE my RA has gotten since September last year. She immediately saw the severe swelling and inflammation in 16 of my JOINTS! 

 

I also have "synovitis" in between several of my finger joints on my right hand, swelling in my ankle is somewhat from the RA, and the stiffness, weakness in both hands, my ankles, hips, feet all related in some way to the RA and Lupus. She has put me on Enbrel. She felt the Xeljanz would not "touch" the severity of the RA now. She said if the Enbrel worked somewhat in about 8 weeks or so, she may consider putting me also on the Xeljanz also, to help the Enbrel. She said we would "try" to get me off the daily Prednisone, due to my osteoporosis being so bad, and she agreed it probably has something to do with my fractures of my hip. My Orthopedic surgeon said the same and so did my PCP. They felt although the fall was very hard on that hip that I may not have had a fracture if I had not had the severe osteoporosis that I do. 

 

I see my Cardiologist next week, and if she says it is okay for me to be put back on one of the pills for osteoporosis, although mine is already severe, it "may" help to protect me from just having a joint "break first" then me fall. That happens at times with severe osteoporosis. It happened to my Grandmother. She did not fall 1st then her hip break. It broke and then she fell. My parents next door neighbor also had that happen. She was just walking down the hallway in her home, and her hip broke. So, thus the reason for trying to get me off the Prednisone and hopefully on one of the pills, like Fosamax. I cannot have the injections again. 

 

Once you have those for a few years, due to the other issues that can cause, with a particular type of complicated femur break, I would have to just go on the pills instead. I see my orthopedic surgeon next Monday to hopefully begin getting me prepared and okayed by my insurance for my neck surgery. I am in so much pain, honestly all over, I can barely stand to move, yet if I sit for just a bit, then I am so stiff, I can barely get up and try to walk. So, it's damned if I do and damned if I don't. Plus now not only am I fighting those damned red "paper wasps" already, but the yellow jackets, and last night those damned "salamanders" showed their asses on my porch. I happened to have my fly swatter and knocked the hell out of him. Hopefully that is one less, it was a grown one so those are the ones that can breed the little devils that can breed in dozens very quickly. Then the gnats are nuts, the "May flies" are crazy, fire ants... dammit without any "winter weather" all of the "bugs" are just everywhere. We still don't know what this "bite looking rash" is... she thinks maybe some type of dermatitis, but I still think it is shingles... just not as strong of a case of them due to the Valtrex, which she said they do use for the shingles. I hope the insurance approves the Enbrel quickly and gets it out to me... I am in such severe pain, it is horrible....

These are the very issues, like insurance and the Enbrel, and "cutting things like Medicaid and other entitlements to those who need the insurance so badly due to severe and chronic illnesses, many that need expensive medications and continued medical care that means "Specialists". We also NEED the NIH to be able to have funds to continue research on so many illnesses... things are just a damned mess with our government and only us, the PEOPLE can do something about it!

Rheumatologist appt today, hoping for Xeljanz, severe finger, thumbs, wrists pain, stiffness, swelling & needing relief - Also thinking that I have "shingles" and not something biting me

Today is the day! To the Rheumy I go. So far, my hand fingers, thumbs and wrists are hurting and swollen I hate when I go to a doctor and by the time I get there whatever is going on seems to be "better" that particular day! Since this has been going on now for a good while, they have been really bad on my right hand where i do well to type here, cannot open jars, cannot carry much of any weight with that hand and arm to the point it is really affecting my left arm and hand. My left elbow is now a mess I think. I know some of it is coming from my neck, but I knew the elbow has been bad for a long while. I've spoken about it before, after surgery on it in about 1998, now it is getting bad again, and I know it is due to me having to use my left hand, arm, wrist and shoulder much more than my right one. I could barely get my tea holder open this morning, because it hurts so badly to pull the lid off of it. I dread the drive up there though. His office means going on I-45 but then I have to make this horrid couple of miles that is a nightmare in order to get over to I-35 where the offices are for the SW Med Center. 

So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity. 

I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx. 

That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes. 


I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication... 

#RABlog WEGO RA Blog Week - 1st Post September 21st,2015 - A Morning or Day in the Life of Ra and Me, Rhia

 Just as anyone on a "normal" Sunday morning, that goes to a worship service, or attends some type of Church, Sunday School Class, and Fellowships with those there, I begin at the moment my eyes pop open.

At times, even just before really being wide awake, the pain begins; along with the stiffness in my fingers, wrists, hands, ankles, toes, and now my lower lumbar/sacral spine. My first "event" is to get my green tea that is in the refrigerator out, and take my pain medications, along with a muscle relaxer, Meclazine to settle my stomach from some of the "dizziness" I often have, due to double vision, (doctors think from the RA/Lupus), and the feelings as if "I" am moving. Some may call it a form of dystonia. It gives me vertigo, and without my daily medication, I would look and feel as if I had not "control" over my body moving, swaying, and sometimes if I am sitting, I almost "gyrate" from the waist up.

I have a couple of other medications I also take with those, and those are just a few of the many prescriptions and over the counter medications I take daily. My mouth is just as dry as the "Sahara Desert" as the saying goes, from the Sjogren's, which usually can come in tandem with RA, Lupus and so forth. So, I try to drink some iced green tea, and get myself awake enough to decide what to wear and so on.

I used to be able to get dressed to go just about anywhere in an hour or less. Unless it was something extremely dressy and formal, an hour was more than plenty of time to get ready.

Now I must plan to take at the very least over an hour and that is not counting the shower I had the night before. I used to take a shower the morning of what I was doing. Now, I usually have to shower that night before, or by the time I take a shower, dry my hair, do my makeup, get my clothes on, jewelry on, and have everything done, I would be too exhausted to go! Kind of like the "spoon theory". I have so many I use for a day, and just showering, dressing, doing makeup. hair, and jewelry/accessories, would use up over half the spoons for the day. I have had to learn to get as much ready the evening before as possible, so I am not completely worn out by the time I am prepared to go.

I usually take a short walk outside and around my home after I get up. It is usually quiet time, and I just take in the sounds of "nature" all around. Then it is in to take ALL of the medications (not counting the ones I take almost before my feet hit the floor). Then I have my two pups, and I give them their medication at the same time. From there, depending on the day of the week, it may mean collecting all of the trash cans, getting them emptied and out to the curb for the trash truck to pick up. Or laundry to do, depending on how much I have, may need to be done. There maybe errands to run for myself or my Mom, picking up medications, going to the market, or any number of things that may come up in a day that I need to take care of.

I feel like I spend more time either making doctor appointments, going to doctor appointments, getting prescriptions refilled, picking up medications... and life some days seems to evolve around something "medical" in nature.

Even down to what I may decide to have for my meals that day. Cereal usually follows my morning medications, especially during the hot months of the year, and usually warm cereals, oatmeal, or cream of wheat are my breakfast picks in the winter. I on occasion on the weekends will prepare a "big breakfast"... like eggs, biscuits, turkey sausage or bacon, and even grits, hash brown potatoes, or cream gravy and at times I make pancakes. But, since for the most part my stomach does not "hold" very much food at a time, I stick with breakfast less filling.

When I stop to truly think about a moment of time in my life, whether a few hours, a day, week, month and so forth, honestly something about an illness or disease is never left out of the equation. I have to always consider how I "may feel" physically before making any definite plans. Even then, it could be I wake up on that day, and must either postpone or cancel something, because I am not feeling well. I feel as if my "body" dictates what I can or can't do any moment of my life. Everything seems to evolve around how I am "feeling".

Chronic pain and/or chronic Illnesses, all too often "rule over" and "take over" your life. They challenge you, they can come on and knock you to your knees when you least expect it. 

Each day, each moment, each breath that passes can mean a fine line between feeling "well" and being very critically ill.

#RABlog

#RABlog

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