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... 

NIH CUTS IN SPENDING??? TAKING MONEY OUT OF RESEARCH FOR US WITH SO MANY ILLNESSES, My own priorities and doctors, Rheumy visit coning & Neck Surgeon, and updates for all

Been a very BUSY and beautiful weekend for me! I FINALLY got that OLD A/C OUT of the window and cleaned that mess up. In fact, I went out this morning to take the trash to the road and someone had already picked it up and taken it thank goodness! I mowed my front lawn, knocked down about 5 BIG old WASPS nests from last year! BUT, those darned things showed up this weekend! I've been waiting, and are already trying to build nests! I had one can of wasp spray but went and bought 2 MORE, which will probably NOT even be enough. The honey bees are also about to drive me nuts.... I am having to watch them, because they may try and rebuild the hive in that old bus. The guy that came and got them last year told me to watch out this time of the year. If I saw many, then let him know and he would bring a box so they would go in there rather than building in the bus again. It took him about almost a month all in all last year to remove all of the hive he could get out, get the QUEEN then all of the workers etc. He came back over like 3 weeks time, and kept getting more and more that he waited to come into the hive, and he got LOTS of bees. He said he felt like that may have been 50,000 or MORE when he finished up. It was scary but amazing! 

But, the damned thing "follow" me around. Yesterday I was working on my porch (I ALSO GOT OUT ALL OF MY HOUSEPLANTS ON THE FRONT PORCH) OMG, TWO OF THE HUGE ONES were difficult, but I have that dolly I can put them on and take them out on it... so I did that, weed eating more in the back lawn, sprayed for weeds again... put out more moth balls around the house and the storage building,did laundry, went to the market, I never made to washing the car, or getting to the cemetery yet... I HAVE THE FLOWERS, for Mom and Dad and my Grandparents all, but the weather was terrible at first, then the wind has been so bad, and that is fine for my parents... but my Grandparents are located where the wind is terrible so I have to actually tie down and anchor the flowers around the bottom of those "vases" on theirs so they will stay in... the flowers have been in the back of my car now for weeks... maybe I will get to that either today or sometimes this week. I have my doctors appt tomorrow FINALLY with my RHEUMATOLOGIST!! When they see how TERRIBLY MY THUMBS AND FINGERS, KNUCKLES ARE SWOLLEN ESPECIALLY ON MY RIGHT HAND I HOPE THEY DO SOMETHING. 

I am getting to where I lose more and more use of that hand daily. My grip is terrible. I barely can carry anything with that hand, and it stays so stiff, sore and swollen... if I get out and do anything, that involves my hands and fingers/wrists, they will swell and just almost not bend they are so stiff. BUT then next week I see my neck surgeon and my Cardiologist, and hopefully I can get the neck surgery done very SOON! The ONLY thing that SUCKS, IS that I MADE A RESERVATION TO GO TO WINSTAR on SUNDAY, NEXT SUNDAY, and my DAMNED APPT WHICH I DIDN'T THINK ABOUT WHEN I WAS MAKING IT IS ON MONDAY! So, I am not sure if I will change one or just "time" the drive back from Winstar to my doctors office, and drive back from there and see him. He is in Dallas, but I will have to really watch my time due to Dallas Traffic.

 It will be kind of mid-morning, my appt with him is at 1:15, so the drive usually takes around 2 hours from my home... so back to that Dallas area, would probably be about the time I would leave the Casino anyway. ALTHOUGH, NOW they are showing we MIGHT HAVE LOUSY WEATHER!!! OF course, always happens when I have something to do that means Dallas driving or if I make plans to run up to Winstar!!! GGGRRR... but that is TX weather this time of year. Anyway, I have got to look some stuff up and have 50 things, on my list... of course I maybe lucky to get 2 or 3 of them done today LOL... but hope all is well with everyone!!! BY THE WAY, DID EVERYONE HEAR ABOUT THE PRESIDENT WANTING TO CUT SPENDING WITH THE NIH???? THAT MEANS LESS MONEY TO HELP WITH RESEARCH TO CURE MAJOR LIFE THREATENING ILLNESSES! HE WILL build a damned wall, BUT does not CARE ABOUT OUR LIVES... WHAT A DAMNED JOKE! It makes me sick to even hear his name, what an ass... I SAID THAT IF HE WAS ELECTED WE WOULD BE IN A WAR IN LESS THAN 3 MONTHS, AND HE WOULD SCREW UP MEDICAL ISSUES FOR US... AND IT APPEARS MY PREDICTIONS COULD BE HEAD ON STRAIGHT!

Thursday’s Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia

http://news.autoimmunearthriticsystemiclife.com/#

For those of you who may not be aware of my daily Newspaper I have and put out everyday here is a link to today's latest addition for today's paper! LOTS of great information here on Chronic Pain, Lupus, RA, other Autoimmune Illnesses, Dementia, and more. There are usually pics, along with articles, and video's daily. 

Please stop by and see the daily additions. I usually update it at least once daily in the mornings, and sometimes twice daily if I feel there is more I should let you know. There is also a link that has that information on the side of my blog pages if you can't find it one day. I've been getting quote a good deal of positive feedback, even from Twitter, IN, FB on several of my pages, and more.... 

Come by, visit and give me your feedback!

Getting tired of yet another Acute Severe Pain from my Elbow to my hand for two nights - joints, nerves sick and tired of pain, surgery, and it taking over my life!

Well dammit it happened again this morning about 4AM!

 This searing, burning, tingling, pain from my elbow down into my hand and my hand seemed to be "swollen".... of course that is the elbow I had "tennis elbow" in in the late 90's about 1998 or so and had surgery. You can feel the screws etc where it was repaired. I know before it gave me problems about 8 years ago, and the diagnosis was it needed surgery again. BUT, so happened, it began to not hurt as badly, thus I avoided surgery. NOW, though I found out this has to be a "nerve" issue just as I thought. For some reason the nerve "ulnar" nerve that runs down into the elbow and then down into the wrist and hand has have a narrowing of that space it is in, or the nerve is impinged at the elbow... and it happening at night is the primary time this happens.

We usually bend our elbows at night, so that is when it entraps the nerve, causes the pain that is so severe, and the numbness and tingling... like my arm is asleep but rather than just "tingle" it burns like it is on fire and no amount of rubbing it, moving it etc helps. I got up, took everything I could take including my bolus this morning, and caught it before it was as bad as the morning before, and finally it eased enough I could sleep for a bit.

But, I know some of this has to do with the "old surgery" and that elbow beginning to wear and tear for one. due to my right shoulder, and arm after the complete reverse shoulder replacement on the right side, I use my left arm, and hand because up until now it was stronger, and I could do more with it... my right one I do well to hold a plate without me helping to hold it with my left hand etc.... so either that nerve entrapped is due to wear and tear of me having to almost overuse my left arm, or that elbow is definitely wearing down from the surgery before, and it could be a splint keeping it straight at night "might" help but as bad as it got and so quickly... dammit why could it not have happened on Sunday night?

Then I could have talked to my Orthopedic Surgeon who did my hip and actually he did the surgery on that elbow in the 1990's... so he would be familiar or have documentation about that issue. Now i don't know what to do. Do I just "wait and see" what happens? Or do I go ahead and be seen for it and what is happening? Now I was just going to be "set" to have the neck surgery, which will help with MUCH of my ongoing shoulder, arm and hand pain on both sides BUT it won't help that nerve in my elbow...

Plus I go to different doctors for the neck and shoulder replacement, than I did for the elbow issue years ago and then he repaired my hip. I thought yesterday, it was just a "fluke" thing because I've been doing so much with both arms, between yard stuff, and cleaning out that back room, putting that cabinet together, but I did use my cordless drill to screw those screws in etc... not a regular screwdriver that would definitely contribute to what is going on with this "new damned mess"... my joints SUCK, SUCK SUCK... and I am SO SICK AND TIRED OF surgeries, but I cannot live with the pain, the atrophy, the weakness, the loss of being able to type, to do MANY OF the things I love to do so much.... I am just at a loss now what to do.... and to top it off the past three days I CANNOT SEEM TO GET WARM! I know the weather is nuts and it is cold, especially with the wind, but dammit I just cannot seem to get warm, not unless I get on the sofa, sit on my butt in there with the heater going and watch TV! Well hell, I cannot waste my life away watching the television and sitting on my butt all the time.... this just sucks!



 Here is the UR: is to exactly what is going on:

http://handtoelbow.com/ulnar-nerve-compression/

Chronic Pain, Weather changes, how they effect us, spinal neck surgery, cardiologist, orthopedic surgery and more....

It was such an awesome day yesterday! Shorts on outside, even did some "mowing" in the back yard with my weed eater! LOL! Yes, the darned WEEDS are so tall, there was no way to get a mower through them, so I had my cordless weed eater out there trying to get them down enough, so I can mow them, plus see how many fire ants are there. I had a bed a discovered in and around one of my front trees and it was "hidden". The other day I found it and it was almost knee high within that tree!!! So since I've been trying to take Peanut out to walk him, and getting things ready for the new puppy (who will be grown by the time I get over doctors appts and be able to pick him up)... after the battle with either shingles or something "biting" me... I have yet to figure out the welts on my arm, on the left arm and a few down my left side... just weird. I had windows open and it was amazing! Then I go out late last night, it was thundering really closely, close enough I even shut down my computer, and it was almost "cold"... we had a front come through and I did not realize it was going to get the chilly outside. So, I am closing windows, and this morning wrapped up in my robe again, and Peanut and I were on the sofa all wrapped up and too cool to even get up -

 I finally got up and warmed up some coffee, and it is just cloudy, damp, almost misting rain and darned cold outside. I just put out one of my huge plants, my fern yesterday because it was hating being inside, and I am in fear the darned thing was going to die, if I didn't get it outside on the porch. So, I heave it outside, but it will be fine. It looks like this is just a "fluke" as far as "cold" and we are going to warm back up... but it sucks... I HATE THE TIME CHANGE! I wished they WOULD LEAVE IT ONE WAY OR THE OTHER!!! It always messes my entire "internal" clock up and takes me two weeks to really get adjusted to the change. I know for some it does not bother them, but it really messes with me. I thought it was Sunday at 1st yesterday as I had posted LOL.. so then I did change my clocks last night, but I didn't sleep at all. I woke up every half hour it seemed, from having nightmares and stupid dreams... I hate nights like that. I had been doing so much yesterday inside and outside, I think I was almost too tired.... so that probably contributed to my not being able to sleep very well. 

I am so tickled at Peanut, he would not even eat "breakfast" with me... he went and got back on the sofa under the blanket and went back to sleep. He is getting pretty good about walking on the leash outside, if I can keep him from "eating" every weed or rock he sees! He is so bad like a toddler about everything on the floor or ground he thinks he should put in his mouth. It worries the heck out of me, especially since I've been putting out weed killer in places and putting out the granules for ticks, fleas, and other creepy, crawly things that shall be coming soon.... anyway, I go back to my Orthopedic surgeon tomorrow for my recheck on my hip. My pain pump is refilled and he upped my meds,


 I think I told all of you, and hopefully I will be able to get my neck surgery scheduled soon. I have an appt with my heart doctor in a couple of weeks, so she will have to sign off on the surgery also. My Orthopedic surgeon who does my spinal surgery is PICKY AND A STICKLER for me having all of my doctors say it is OKAY, and I have to have a chest Xray, a current EKG and such, before he will do the surgery, which is a good thing, just a pain in the butt to get all of it done, right at the time before surgery.... anyway, hope all is well with you in your corner of the world. I am probably going to be back on the sofa with Peanut covered up part of the day LOL! cold for me also and I am tired I guess from everything I've done over the past few days....

A LESSON FOR ALL - NEVER BE AFRAID TO SPEAK UP TO YOUR DOCTORS, PHARMACISTS, NURSES, & MEDICAL PROFESSIONALS!

Taking your own medical knowledge about yourself in your own hands can save you money, time, hassle, and maybe even your LIFE!

Here is my own story:

I think we should FIRE all of the "meteorologists" when it comes to their weather "forecasts"! For two days, the forecast was thunderstorms both yesterday and today... 70 to 80% chance! I had a doctors appt in Dallas yesterday afternoon, and I was concerned since I HAD to go to this one, that I would be in bad weather with BAD drivers, when it comes to Dallas traffic... well, then they forecast that the "thunderstorms" would hold off till "early Friday morning" thus although it looked horrible in the skies over Dallas yesterday, no rain etc really happened. Then I get up this morning to NO thunderstorms in the night, but HIGH HUMIDITY THAT FEELS LIKE A SAUNA OUTSIDE ALREADY! My lawn looks as if we had 4 inches of rain everything is so wet from the humidity! Now today the chances of thunderstorms is just about gone, and a small % of rain maybe. Well, I could have told them days ago, we would NOT have thunderstorms, but we WOULD HAVE HORRIBLE HUMIDITY, along with the Barometric pressure being nuts! MANY of us with "joint problems, back problems, neck, have had joint replacements, have arthritis, and RA, or any type of chronic pain problem, could have gave a better forecast from the way our bodies "feel" than they can watching their radars! LOL!

 I spoke with 3 ladies at my doctors office yesterday, and all 3 said the same thing just about I did about the weather, and how it effects them. Then, I was in for my pain pump to be refilled. So, I go in and he was running about on time, which I was happy about, because my appt was at 2:30PM, and I wanted out of Dallas hopefully BEFORE rush hour... so he finishes up, and he upped my pump and upped me to 5 boluses a day rather than 4 since the hip issues, have caused me to have to delay my neck surgery, back surgery etc... plus now with the hip being repaired and not replaced, (which I wonder why he did not just replace it. Due to me having severe osteoporosis, the "normal" would be to replace it. Now I have a very high chance of having to have it replaced down the road simply because of the RA, Lupus and Osteoporosis) but anyway, now I have more pain up and down that leg, mostly related to my lower lumbar and sacral spine issues that were tweaked, along with my ankle, and my neck when I fell. I did not have that much problem with my back and neck, and the ankle until after the hip was better, then the others began to show themselves. Because I was in so much horrid pain with the fractures of my hip, the others were not as "painful" at the time. Now with the hip repaired, the ankle, my neck and lower back pain have become worse. 

Anyway, he finishes refilling it, and does his thing with the wireless device that "talks" to the pump, but he told me my next "refill date was like in October"! I said that cannot be right! With upping my meds there is no way I would go that many months before needing a refill. So, as he was walking out of the room, I used my own device that "reads" the pump, gives me the information and also allows me to give myself the boluses when they are due... and he had done my "bolus" amount wrong again. It should be 1.15 now for 5 times a day... but he put in .1150 which is a HUGE DIFFERENCE FROM 1.115! Thus the difference... So, I stepped in the hallway and was asking the nurse to have him come back, that I thought there was a problem, and sure enough... he put the decimal in the wrong position. Now my next refill is on June 20th or something like that in June! Which MAKES SENSE! LOL! So, just another NOTE for each of you/. DO NOT BE FRIGHTENED TO QUESTION YOUR DOCTORS OR PHARMACISTS, NURSES ETC... if you FEEL THEIR IS A MISTAKE OR SOMETHING WRONG, SAY SO! It can save you lots of hassle, or may even save your life! Don't feel those like doctors are "God" because they are humans, they do make mistakes... especially with a high number of patients they see now, and all they have to contend with, STOP and speak UP if you feel something is NOT RIGHT!!!!!

Dementia linked to Autoimmune Illnesses? This is both interesting and frightening....

Dementia Risk Up with Autoimmunity

http://www.medpagetoday.com/rheumatology/generalrheumatology/63498?xid=nl_mpt_special_reports_2017-03-09%20&uun=g773630d0r5952786u


Here are a few excerpts from the article on Medpage Today...

Among the 25 autoimmune diseases, 18 had significant positive associations for dementia (P for all <0 .001="" p="">

• Addison's disease, RR 1.48 (95% CI 1.34-1.64)
• Multiple sclerosis, RR 1.97 (95% CI 1.88-2.07)
• Psoriasis, RR 1.29 (95% CI 1.25-1.34)
• Systemic lupus erythematosus, RR 1.46 (95% CI 1.32-1.61)
• Thyrotoxicosis, RR 1.31 (95% CI 1.27-1.34)

Of the 81,502 patients with autoimmune disease who also developed dementia, the subtype of dementia was identified in 42,568 -- 20,032 with Alzheimer's and 22,536 with vascular dementia.


Risks for vascular dementia but not Alzheimer's disease were increased for idiopathic thrombocytopenia purpura, pemphigus, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and most notably, for polyarteritis nodosa, with a rate ratio of 2.12 (95% CI 1.42-3.05, P<0 .001="" p="">
I have a "genetic" factor for autoimmune illnesses on my Mom's side... and also Dementia and Alzheimer's on my maternal side... Cause to really be upsetting and hope they do much more research into this....

SHINGLES??? What NOW! Always some thing to deal with medically it feels like.

I began to put the cabinet together yesterday. Looks like the actual "corners" that are "damaged" will be on the bottom of the cabinet in the back portion I think. Anyway, I still have about 30% to finish. I was actually putting it together in my hallway, but I am thinking about taking what I have put together now, into the back bedroom. 

 

If I put much more of it together, then it will be too large and probably too heavy to move into that room. I had to take some things out of that room, and make a space large enough to work in. But, I have an "odd" thing going on. For one, although the weather is kind of dreary, cloudy, and rainy looking, it is not all that cold outside, more just a very damp coolness. 

 

But, I've been COLD now for 2 days, upset stomach off and on, and I "thought" something had bitten me, or stung me on my left arm. It began feeling like it has "fiberglass" on it, that tingling, stinging, very itchy feeling. I've not felt all that great now for several days, and I figured it is just the weather causing me to feel lousy. 

 

But, this now severe itching is driving me nuts. I found what looked like one small "blood blister, about half way up on my upper arm, up from my elbow. It almost reminded me of the severe wasp sting I had last year, but as far as I know, of course I have not been stung by any type of wasp. Plus, I don't think mosquito's are out and even if they were this is not from a mosquito, I don't think either. 

 

*By what I know about "shingles" and what I have looked up, and with my Lupus and RA, that makes me a higher risk to get them, it "might be" shingles dammit. If anything touches my skin from just below my elbow, in the bend of my elbow and then about up to this "green spot" it makes me want to scratch the heck of out it, but it burns, stings and tingles. I did not know that you can have shingles and not have an eruption of the blisters/rash that usually appear. My guess since I read that the rash actually may not appear for several days after the pain and itching has happened, it kind of looks like I may have some "rash-like" places especially in the bed of the elbow. Good gosh, what else... I also have doctors appts. Monday for my hip f/u, Tuesday to Dallas to see my Rheumatologist, and Thursday back to Dallas to have my pain pump refilled. I also have been fighting a bad headache along with my upset stomach. Anyway, I guess I will just wait and see what this looks and feels like tomorrow. I thought I would be putting that cabinet together the rest of the way today, but with my stomach so nauseated, right now I think heading for the sofa is best for while at least until my tummy feels better. Take care everyone, there are all kinds of "bugs", the Flu and other illnesses around right now... Rhia Steele "All things Autoimmune"

 

Here are a couple of websites with information on Shingles:

 

http://www.healthline.com/health-slideshow/early-symptoms-shingles 

 

http://www.mayoclinic.org/diseases-conditions/shingles/basics/symptoms/con-20019574 

 

 

 

 

Stressing Out, Trying to Cope, with surgeries,health,family,doctors, and trying to "get over" all that I cannot "fix".... Weather,Chronic Pain,RA,Doctors,Hip surgery & Life

For some reason (and I know partially some of the reasons) I am just in such an odd, feeling like I am just totally forgotten about, crappy mood that I've been trying to "shake" now for a week or more. I know the weather does not help, this HOT one moment, and in a few hours, COLD, dreary, and you need a coat on, and then that makes my entire body almost have this deep ache, especially in my joints. Even the entire leg from the hip all the way to my foot, has an ache to it... and it was not like that right after the surgeries. In fact after it was repaired, I did not have a HUGE amount of pain, but enough I had to take medication to do my PT, etc... 

But now, even again this morning, I woke up to a horrid headache, that then made me sick to my stomach, and I knew better than to drink any coffee if my stomach is nauseated... that just makes it worse. So, I made a cup of hot tea instead and that seemed to help calm my stomach and I took my nausea meds also. then of course although it was sunny yesterday, with the wind it was still really to COOL to do much outside.. So, wake up this morning to not rain yet, but now it has clouded over, and we have a pretty good have of rain or even thunderstorms later this evening, in to tomorrow and maybe rain on Tuesday also. Plus the ordeal with my Surgeons' office Friday left me pissed... I wanted to make sure I had seen him BEFORE going to my Rheumatologist, so I would have the latest X=ray and know how the hip is healing etc. Plus I have a bit of a purple spot, and have had some what I figure is "nerve pain" down that entire leg, but more than likely that is from my back. 

It is still annoying because I get home to find out they rescheduled my appt for the SAME DAY AS MY RHEUMATOLOGIST IN DALLAS!!!! Well, of course that won't work, so now I have to get them to hopefully schedule it BEFORE I go to my Rheumy. because we want to try new medication the RA is getting so much worse, especially in my thumbs, fingers and wrists. My right hand has swollen spots on it almost all the time now or especially if I do lots of things using my hands... from cutting small branches, to washing my car, even driving makes my thumbs and fingers (the 2 next to my thumb) "go to sleep" or be numb. It is annoying plus that tells me the RA is progressing, which is the last thing I need to happen. I've been trying to keep as busy as possible doing cleaning, throwing away stuff that needs to go, taking care of all of my plants, ready to put them outside as soon as I can... a couple of them HATE being inside during the winter and will look like they are going to die while inside.

 I even put my cool mist humidifier in the room and run it several hours a day. Anyway, I have PLENTY to do that can keep me busy, just going through, and as I said throwing away old things, or getting rid of stuff I know I will never use. I keep lots of things (a few certain things not like a hoarder) LOL that I feel may come in handy later. Sure enough there are many times, something comes up and I need a certain thing, then I recall, I put something away,, that may work, and I don't have to buy anything, or run out to the store, etc. But, there are also things I hang onto knowing fully well, they just need to be trashed. I even do that with coupons now. I cut out what I need and throw away the rest. I had been taking them to the girls at Wal-greens, but so many of them are gone, or they may not have small babies that need certain items that I have coupons for etc. I also pitched a couple pair of old sandals. I had been just using them around in the yard during the hot months, but I had basically "glued" them one or twice, the stone kept falling out of another pair, that we worn out, and stuff like "half-slips" OMG I cannot recall the last time I needed any type of "slip" under clothing - Women's clothes are different or they have a liner in them thus no need for a slip etc. And I had a billion samples of all kinds of shampoo, and those types of things, that I had accumulated over 5 or 6 years, and some of it, was just too old, and needed to be trashed. I also have been going through all of my "hand tools"... like for my plants, hand tools for my yard, spades, things like paint brushes, items to work on my windows with, screws, nuts, bolts, nails, sheet rock things, my screwdrivers, cordless drill, and just an entire "collection" of things such as screws, nuts, bolts, I never throw away, I can guarantee I will need one that size later, so I have been putting those in empty pill bottles, I take off the labels and save some to put those types of things in them. I have several bins, many need nose pliers, vice grips, small saws, hammers, and as I said you name it, I have kept them... so they are going to finally be organized and I went ahead and ordered the "cabinet" with doors - so many, of those types of things can be put away, organized, rather than sitting in a couple of boxes on table tops taking up space, and causing me to have to dig through things when i need something. 

BUT, EVEN WITH ALL OF THAT, I GUESS I AM SICK OF FEELING OR BRING ILL, OR NOT FEELING WELL, or "not doing some stuff" until I get another "review" about my hip and foot. I am just frustrated, with myself, with all of the catching up, with stuff I "am not sure" whether I should do or not... which is really stupid. My surgeon told me last time I was there, I could basically "DO" What I FELT I COULD DO... LOL! not things such as sky-diving, or up on a ten-foot ladder painting right now, or trying to pick up things that are too heavy, and that is more for my neck and back, than it is my hip. I do know I've got some pain from the hip that runs down the inside of my thigh, and they say that can be very present, and is likely after a hip fracture and repair.

 I am also using muscles that were not used for 6 weeks or more... while I was in the hospital and them Rehab Inpatient PT. But, they really were giving me a workout in PT honestly. So, I am avidly doing my ankle and foot exercises, and I make sure I do them with both legs, so both feel strong. I had sprained the left ankle a couple of times also, and due to the flat feet, that tendency to "re--sprain" or for those muscles and tendons to be loose is probably there in that foot too. Right now, I am just having to MAKE MYSELF SIT HERE AND TYPE!!!! It makes my neck and shoulders hurt if I type for very long, a well as my thumbs,fingers and wrists. I guess in "wrapping" up this ongoing FB post, I will close with I know MANY of us are going through the same thing. But, I think I expected "more out of myself" than where I am.

I also felt I would be more "settled" with all of the medical things, so I could get my neck fixed... I know I probably face lower back surgery, especially since we found out I had that "missing lamina" that they feel I was that way, without it there in that area, and I know my discs there are not good either... and even though it's been 8 months or so since Mom passed away, I am still dealing with her, paperwork and stuff, but also that I still in ways grieve for her, and find myself almost "LOST" with her no longer around. I catch myself thinking "I should call Mom and tell her, this, that or the other"... then it dawns on me, that she is not "reachable" from here anymore... so LOTS of "stuff" even more than I've poured out here is causing me to really have a great deal of "stress" that some is really useless... if I can't "fix" it then I should not stress over it....

Rare Disease Day Upcoming - Share Your Stories or Learn More about how MANY Rare Diseases there are..

National Organization for Rare Disorders (NORD) Rare Disease Day

 

February 28, 2017

 

Rare Disease Day® - NORD (National Organization for Rare Disorders): NORD is the official US sponsor of Rare Disease Day. Share your stories and promote awareness with millions of patients and their families around the world.

 

Did you know?  Rare diseases are not so rare:  there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.
People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.

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Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. You can make a difference: sign up to receive news and updates, start planning your event, and share feedback and ideas for next year.