Saturday, August 29, 2015
Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...
A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.
ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)
Friday, August 28, 2015
Chest Xrays, Cellulitis, RA, Swollen Joints, Fingers, Hands, Unable to take my RA meds, Lawns, Neighbors, and Dealing with all of the daily stuff of Life
Well once again we face another Friday! This week has been anything BUT GOOD... in about 4 billion ways, I thought I may just lose my mind, or the tiny bit of it I thought I had left.... FINALLY and who knows for sure but Urgent Care called yesterday afternoon and after over 2 WEEKS of back and forth from them to the Rheumy, I think they have the correct Order for the Chest Xray!!!! Sometimes miracles "can happen"... although lately NOT for me! I believe I mentioned I DID FINALLY FIND a Surgeon who is thankfully just over in Waxahachie to probably remove this lump on my left thigh. But, what I have NOT told the doctors at all, is that I have this other one that formed several weeks back on my right thigh, in just about the same spot. But, since I am seeing the surgeon a week From today, I felt I would bring it up then. BUT< once again I ran into another issue... now that lump that never really was "red" or what they call "agitated" on the outside, or really was never sore, now in the past few days, had become more red on the outside of the skin and it is extremely sore... and so it the one on my right thigh... not really red but very sore to the touch. Since I still have a week before i see the surgeon I called my PCP this morning and told them to let him know, and that I felt I needed another round of antibiotics until I can get in to see the surgeon. I fear now that the infection could be growing outward, and that is the very last thing I need right now... so I am waiting on a call back to see what they say. I hope he does not want me to come in... there is really nothing more to do, but get back on the antibiotics, and wait to see the surgeon,... and then I have to run over across town and get that chest Xray I hope done today. PLUS I DO have to take Mom's care to be inspected today, since they have made the changes in how we register and inspect our vehicles in TX, as of March 2015.So, we can't get the registration sticker until I get it inspected.... but not a big ordeal, I just have to go get her car, and take it to be inspected... I DID get the "bug granules" finally yesterday and I broadcasted them from front, back and sides all over my lawn. I HOPE that curbs the fire ants, which I have already put stuff on all of the mounds, but this other stuff also gets rid of other ants, fleas and so forth, which I can tell what I put out in the Spring has stopped working... thus I needed to do it again... ONE GOOD NOTE FINALLY... OR I HOPE SO... MY ECHOCARDIOGRAM CAME BACK THAT MY HEART FUNCTION IS "BETTER" A BIT, THAN WHEN I HAD ONE DONE IN 2011!!!!! NOW THAT DID MAKE ME HAPPY! But, as I told Mom, I "hope" the heck it is "mine" and is accurate!!! Knowing my luck, hell it could be read wrong or someone else's - anything is possible with me and my stuff.... nothing is usually ever that easy..... but if so, that means I should be good to go for the lumbar surgery dammit if I ever get RID of this damned whatever is going on with the lumps on both thighs... there is no way, no how they will do surgery on me until I am all clear of that, along with now I will NOT be able to get back on the Orencia or the Xeljanz UNTIL I am all CLEAR of infection!!! WHICH MY RA IS so MUCH worse! Both of my hands, wrists and fingers, I can barely use... I have hell from opening a jar, a lid, or anything, along with I can't carry stuff as well... my hands are just so swollen, even this morning worse than ever... my ankles, my shoulders, neck everything to do with my "joints" seem to be so much worse that ever... and I am extremely concerned... not only am I so stiff and swollen, the pain is bad again in my hands, fingers and wrists... PLUS I GUESS since my neighbor had chosen to all of a sudden ignore my existence... O am going to have to fix my lawn mower (the rope broke that pulls it to crank) fix that, and mow the lawn myself... I am sick and tired of seeing it like this, and I will be damned if I ask him... he has a "bee" in his bonnet over something, I have NO CLUE what the problem is... but my yard looks like hell and I intend on getting it mowed dammit... well I have to get dressed and get going... or I will never get all of this crap done... more later, and happy Friday to All!
Friday, July 3, 2015
Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...
This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.
Wednesday, July 30, 2014
Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...
Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia
Tuesday, July 22, 2014
It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.
I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs.
I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia
I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!
I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something... If this is still not making sense, send me an email at firstname.lastname@example.org or email@example.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!
Tuesday, June 3, 2014
Information for Rheumatoid Arthritis Patients & Caregivers
(Great Results with Less Side Effects)
If you’re looking for information on Rheumatoid Arthritis, head over to the RA Patient Resources Sharing Hub, sponsored by Pfizer.
There you'll find information about the role inflammation plays in your body, as well as educational videos about RA. You'll also find digital resources that can help you manage your RA. These tips and tools from Pfizer can help support you on your RA journey. Additionally, you will find information about a savings card for a prescription treatment option for RA.
Check out this link to WEGOHEALTH and the latest from Pfizer on Xeljanz: