LUPUS AWARENESS MONTH MAY 2020!!!

LUPUS AWARENESS MONTH

During this time of health crisis, we invite you to shine a little brighter. Congress has proclaimed May as Lupus Awareness Month. We ask you to consider turning purple on May 15, 2020 in observance of Put on Purple Day — a day when the global lupus community rallies to bring greater attention to this terrible disease.

https://worldlupusday.org/

"2018!" HOPE for better health, less pain, yet it's not beginning very well, Lupus, RA flares possible & weather is literally I believe reeking havoc with me!

Praying for RELIEF, from Lupus, RA, Chronic Pain, and trying to remain hopeful that being in pain does NOT keep me from doing the things I want to do for 2018

The weather here like many places has been down right bitter cold! We were in the teens' night before and last night, at 17 this morning when I first got up. Fortunately, so far there has been no falling precipitation, or it may have been really bad here. I know I've heard the ambulances etc going out off and on now for days, I am sure many people ill, or get too cold etc. I am having a very difficult time "coping" with everything. I've so wanted 2018 to begin with new things to do, to accomplish, and pray that pain and illness don't plague me. Yet, I've been suffering with a severe headache off and on now for really 2 weeks, and when the weather got so cold, I believe every bone in my body hurts. I "may have a Lupus and/or RA" flare.

I feel like after they took me off the Methotrexate, that keeps the other medications from working as well. We did it due to me having infections so much back a good while ago, and now that seems to be somewhat "better" BUT the pain has been so horrible, almost unbearable, and for me to say that, and I am talking about over and above all of my medications, the pain pump and so forth. I FEAR going to the doctor's, one fear is that my neck could be messed up again. If I were to go to Urgent Care they could give me an injection of a corticosteroid along with a 14 day supply of a huge dose of prednisone, and if it is the Lupus and/or RA, then that would definitely help the pain, stiffness and inflammation.

Then I've had hell with my left elbow for a long while. In fact the Orthopedic Surgeon who did my knee replacements etc, told me several years ago that my left elbow really needed another surgery on it. Well, he injected it and it went a long while without giving me hell. But in the summer when I was doing all of the windows, getting them open (the old windows that someone painted shut inside) so I could open windows when the days were nice, plus I can clean them better, and be able to paint them etc... and it took a couple of weeks, but I got all but about 3 in the house that so far I've not been able to get open. One of them has a crack in it, so I didn't want to be messing with it, I JUST put in the one glass pane that the hail broke out, 2 or 3 years ago!

But, I have a couple more than NOW since I know I can actually do them myself, when the weather warms up I want to replace any that are cracked. Many of them have the initial glass that was put in them in 1950 when the house was built, so the glass is very brittle, after so many years... anyway, I had surgery on the left elbow in about 1998 or so. In fact, Dr. Roye who had just began practicing in Waxahachie, did the surgery. He fixed the elbow and had also done work on my left shoulder. But, the elbow has kind of like pins or screws in it, and they have always "poked" out so you can see them.

But, they had been right "above" the upper part of my elbow, and I accidentally was working on one of those windows and it was very loose, rather than so tight as most of them. I knew I had to prop it open in order to do what I needed to do, so it would not come crashing down on my fingers... I had placed a piece of board under it, but I was trying to get a screen in where that storm window had been used for an A/C unit. When it went out and I got the new one I moved it out of that window and wanted to put the screen back in it... but it is harder to do than you think, the way that screen has to go high up, then slide down into that window is difficult when you are having to go under the old inside window. Well, I started to put the screen in and try to get it up high enough to go into the window, but you also have to push on the outside of the storm window in order to get the screen to go in correctly. So, I knocked that darned board down and down went that heavy wooden window right down on that elbow where those screws are...

once that happened I was in so much pain, plus the screws actually MOVED down towards the bottom of my elbow than where they had been... well of course the hip fracture, then the neck surgery etc. and although the elbow pops now and then, it really has not hurt that much. Up until the past about 4 or 5 nights... it wakes me up every morning about 2AM from my elbow down to my fingers "numb" yet "on fire".... like it has fallen asleep so badly, and now as it "wakes" up that PAIN that comes with it! At first I thought it was my wrist because I have carpal tunnel, and I had the right hand fixed, but other things came up so I left the left one alone.... but I know it is not "just" my wrist down, and actually starts right above the elbow and radiates down into my thumbs and two sometimes 3 fingers on the thumb side. I believe I have Cubital tunnel syndrome which it what I think I had when it was repaired in the late 90's....

and after hitting those screws and it was already giving me problems, I feel that really did a number on it.... BUT, then for 2 nights beside HORRIBLE NIGHTMARES. I am woke up by my left LEG from my knee down with a very deep terrible ache! Bad enough it woke me up again last night. I got up took some meds and laid back down, but by 4AM I was up with the both of them hurting again.... What truly irks me about all of it, is that I've prayed and prayed to just have "time" to not be in so much pain, to not have horrible health issues, so I CAN BLOG, WRITE, AND DO SOME THINGS I WANT TO DO! IF between not sleeping due to severe pain, and then the weather really making it worse, and maybe some type of a flare, I hate to being griping but I pray the rest of 2018 is not like the 1st couple of days have been. I am almost embarrassed to "whine" about these things but damned it's just so hard to live with and not be able to talk to anyone about it....

A bit of catching up, been once again "ill" with "something" a Flare possiblly, but fever, severe body hurting all over, severe headache and NO energy!!!!!

Dropping in quickly to say I am still here! Been sick for two and a half days at least with yet again, fever, severe body pain all over, severe headache, and neck hurting, and my lower sides...plus NO energy...it was as if someone took a needle stuck it in e, and drained EVER BIT OF WHAT LITTLE BIT OF STAMINA I HAVE AND TOOK IT ALL AWAY! I could barely go from one room to the other at my house...so needless to say, I am BEHIND on painting, and everything. this house needs to be cleaned, including dogs bathed, and so forth... and I am way behind on getting the painting done... and I had been on a roll... not sure if it is just the heat that ha s zapped me, even though I have tried not to be in it a lot, or possibly just a continuing LUPUS and RA flare...


PLUS my ankles are "better" but that right one continues to swell if I get up and stand, walk on it a great deal, like painting, standing on the short ladder, or cleaning house... and I am sure the heat does not help it either... I felt as if someone had taken a ball bat to me and beat the hell out of me... honestly...So, I am headed to go and paint... and hope I can continue to "feel well enough" to get somewhat caught up o that, then tomorrow spend the day bathing the dogs, cleaning and and showering me! Anyway, keep my in your thoughts, and keep my kids in your thoughts and prayers...I know they have a an awesome trip to the river, for a week, but will be driving home I think tomorrow with their huge travel trailer in tow...so I wish them safety in getting home... 


This damned Lupus, RA, Sjogrnen's and the like all added up can really put a kink in your life, and you never know when it will hit you like a ton of bricks...