Lupus Flare, RA Flares, UTI's, Kidney Infection Severe Pain Stiffness, Swelling and the list goes on...

Lupus Flare, RA Flare, UTI's, Kidney Infections... All of the Severe Pain, Tiredness, Fatigue, Joint stiffness, Swelling and WHY Can't they stuff fIND SOMEWAY TO RID US OF THESE HORRIBLE CHRONIC AUTOIMMUNE ILLNESSES????

Of course I get "good news" over the whole endoscopy/Colo-Guard thing... THEN after suffering for WEEKS HONESTLY with what I knew was a Severe Lupus and RA flare(s).... The pain was so horrible I honestly thought my meds were "placebo's".... 

of course I knew better, but the stiffness, pain, in my hips, lower back, ankles, thumbs, wrists, shoulder, all were just about to drive me nuts. I had appts. already with my PCPC, last week, then I see my Pain Doctor this coming Monday and was supposed to also see my rheumatologist Monday so I only had to make ONE TRIP to Dallas, - 

My Heart Doctor and I have an appt at the end of April to discuss the possibility of the pacemaker, which I had been outside during the past couple of weeks, when we had "half decent" weather trying to catch up on killing a back yard FULL OF KNEE TALL WEEDS, from so MUCH rain and more still to come, and trying to do all of the "spring stuff"... but I was in so much pain, so tired, weak, dizzy at times... I just felt it was the Lupus and tried to move through it, until the flares were better. By now, usually I would have went to Urgent Care, got a shot of corticosteroids, the huge 14 dose of prednisone, to get over the flares, but as I said I already felt so lousy, wanted to get stuff done in between the sofa, TV and trying to stand the pain... and get groceries,
etc... 

so when I noticed about 10 days ago or more now, I was having to pee so much, which hot weather, drinking lots of green tea and water, and the Lasix, does that to me... but I noticed it was "way worse" than the usual.. then I noticed I was burning, and the pain began to feel more like "kidney stones" as I had before, but it had been years ago from the last time.

I had just moved back here, and this was before I had my Medicare, but I spent 4 times in one month, at the ER in a neighboring town, with 4 kidney stones,.. trying to get them to pass with lots of IV fluids, pain meds there, then they would sent me home with a few, and within about 5 or 6 days, the pain was back and I was back at the ER... repeating... finally I passed all of them, but it was a nightmare... after that, I have probably had a couple of small ones I passed... but I don't usually get UTI's and if I do - most of the time,

I really don't have "symptoms"... or thought I didn't, but this time I KNEW this was more than Lupus and RA Flares... sure enough, a severe UTI, so shot of corticosteroids and a huge 14 day round of Prednisone, and Levaquin for the kidney infection... I got the meds on Wednesday last week, and even yesterday, I am still not getting over any of it as fast as I felt I would. SO yesterday, my Rheumy's office called late to tell me they are NOT in the OFFICE MONDAY! So that means TWO trips anyway to Dallas, because I have to see the Pain Doctor Monday, my pump has to be filled....

I have SO MUCH I "want" to get done and some I NEED to get done, but I also know I HAVE to get WELL!!!! I am thankful for the good news on all of the colon and endoscopy stuff... really, but I just wished these stupid other CHRONIC ILLNESSES and PAIN would just give me a few months break, I HATE to ask to "go up" on my daily Prednisone which now is 5 mg daily... BUT it looks like if all of the other meds, Plaquenil, MTX, Enbrel, Prednisone small dose, etc d not start working better after these flares I may face a higher dose of Prednisone for a at least while, then taper back down again,... I still have the appt also with the Endocrinologist at the end of the month ... to see if the Thyroid and/or Parathyroid is still too HIGH and what we do about that. From what I've read and researched, the Parathyroid often is cause from a small tumor (usually benign) and may take a small surgery to get rid of... and of course "thyroid: issues run in my family, and medication often fixes that, unless again you have a "goiter" that has to be removed.... so again lots of "stuff" (when it rains does it ever pour)!

More Information Below on the Parathyroid gland and the Thyroid Glands, What they Do in the body, and all of the issues that can happen due to any diseases of these glands....


http://endocrinediseases.org/parathyroid/parathyroid_background.shtml


http://endocrinediseases.org/thyroid/thyroid_background.shtml

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 

I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...

I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" :)