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.

Click to Donate to Research!

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.

 

Friday's Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia

For All of you that may not know that I also have a Daily Newspaper that contain all types of articles about Chronic Pain, Dementia, RA, other Autoimmune Diseases, Lupus, and everything that pertains to these types of Systemic Illnesses, Chronic Illnesses, Dementia and Chronic Pain Issues.

From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.

There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.

Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.


http://news.autoimmunearthriticsystemiclife.com/#

The name of the Newspaper is:

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®