Showing posts with label RA meds. Show all posts
Showing posts with label RA meds. Show all posts

Saturday, June 15, 2019

Happy Father's Day TO Each if you - Dad's, Grandad's, step-dad's those who raise you like they are your Dad & More!

TO ALL of the INCREDIBLE DAD'S, FATHER'S, SONS WHO WILL SOMEDAY BE DAD'S, GRANDFATHERS, & the list goes on.. no matter how old we are "Our Dad will always be"  Our Dad and "Bestest Fishin' Friend!" Happy FAther's Day! And Dad even after this much time has gone by, I STILL miss you! I seem to "still use some of your sayings" almost everyday of my life! LOL!

Okay, here it is in a "short version"... I was scheduled for the pacemaker this coming Monday morning in Dallas. The week before Memorial Day my left hand around my knuckles "started in my thumb" began to "look odd, kind of swollen, and reddish"..I thought I just over used it doing something. By the next morning, the knuckles next to it did the same, and so on, so forth. I STILL felt it was a Lupus/RA flare BUT I HAD NEVER HAD THIS TYPE OF ISSUE WITH MY LEFT HAND AND KNUCKLES..I researched, asked 2 pharmacists, and decided it maybe "gout arthritis", and I would need a special med called "Colchicine" (it helps to dissolve the uric acid crystals in the fluid around the joints).

So finally I went to Urgent Care, I believe it was about a week ago LAST Wednesday, so almost 2 weeks ago. They felt the same either gout, OR possibly some type of "infection arthritis" in the knuckles. Well, I went into panic mode. I KNEW NO PACEMAKER IF I SHOW ANY TYPE OF INFECTION! I was now on one antibiotic, higher dose of prednisone, & they did lab work to find out if they could see what was causing the problem. I DID NOT GET to even know until Thursday (so over a week or more)








Thursday, January 21, 2016

Glenn Frey of the Eagles & His Suffering from RA & The Medications and Treatments that can be almost as bad as the diseases....

Gosh How many of us discuss this daily! With RA, Lupus, and any type of autoimmune diseases, the medications themselves can cause as much havoc with our bodies as the diseases themselves. Do I ever know this one, after the double set of cellulitis on each thigh, that then turned into abscesses, that took over 7 MONTHS to finally get to the place that I am not on antibiotics, they are not debriding them weekly, and then I have had double pneumonia at least twice... I know for a fact that one of my RA biologic medications caused the cellulitis that turned into the nightmare of abscesses. After having those incised, and for weeks they were still not healing, finally I was sent to a wound care specialist at Charleton Methodist in Dallas. I have no doubt had I not went to them, I would have been in the hospital with IV antibiotics and no telling how bad of shape I could have been in... I was so terrified of the MERSA virus being a part of it, I kept seeing that those two huge holes in my thighs were turning almost a dark brown/blue in color and I feared the worst each day...although the left one finally sealed over, the abscessed again, had to be incised again, it healed just before I went to the Wound Care Place... but the right one was 7 trips for 7 weeks and it just finally sealed over about 2 weeks ago... yet the doctor released me, and said it is still healing some on the inside... each day I have to check it though to make sure it is not abscessing again. SO FAR I have been fortunate... even with the double pneumonia, Ive had it at least 3 times, once before being diagnosed with the autoimmune illnesses... and even though I probably should have went to the hospital, I stayed at home, done everything the doctors told me to do, and made it without having a hospital visit... BUT, that does not mean that it will not happen... I know now what to watch for... I had no signs of having pneumonia the last two times other than a severe headache, then I began to hallucinate, and finally figured out I was running a high fever... over 103 degrees... which sent me to Urgent Care immediately! Again, I was one of the lucky ones... but it meant no more biologics for now, they took me off the MTX, which I had been on for 5 or more years... and FINALLY after having my stalled pain pump replaced, my Rheumatologist started me on Minocyline... an antibiotic they use for RA.. BUT, I figure I will be going on Xeljanz, within 3 months... yet, the RA and Lupus are continuing to take their toll on my joints... I have an 80% compressed disc in my neck, and need surgery very soon....and I still need the lower lumbar/sacral surgery... both I know are getting worse because of the Lupus and RA... so are my hands, fingers, thumbs and wrists, that are showing signs of looking crooked...especially my thumbs which hurt so badly.... I have lost a great deal of strength and grip in my right hand, and I am right handed.... I just yesterday threw out 3 MONTHS worth of that one biologic... and it almost made me sick to pitch out medication, that probably cost thousands of dollars... but I cannot return it, I cannot do anything with it, and I do not wish to ever try that one again... not after what I have suffered through... so to see others, and then see that these diseases do not show any mercy... they effect the famous, the folks like myself, the young, the middle aged, the elderly... and can take a life so much, much earlier than should be taken... it is a crime, that until research finds a cure, a reason, a way to stop these hideous illnesses in their tracks... none of us are immune for sure... 


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!

Wednesday, August 12, 2015

RA, Lupus, Chronic Pain - the Complexities of Living With an Autoimmune Illness and/or Chronic Illness - How Do you Live with the all too often feelings of "guilt" of not fulfilling your destinies...

As you can see the very "title" of this post is complicated, to say the least. As I've had to succumb over the past almost 3 weeks of cellulitis, strong antibiotics that totally messed my entire digestive tract up, to the addition of a "stomach bug" that is going around here locally, I find myself full again of guilt, of shame, of feeling as if I am letting my obligations down as an advocate, a "voice" for others, of my own writing, my blog, my Mom, and everything else that I've had to "put on hold" due to once again the "arrows" of dealing being chronically ill.

There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.

I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.

No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...

I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.

I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small  - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...

I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.

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