Talking about our own Advocacy work, activism, the GOOD you TRULY DO, & What makes "us tick" - all of us differ one to the other... and Chronic Illnesses and pain can create and reek havoc on us, as well as age....

I have a "surprise" for everyone, but I wanted to wait until our newspaper publishes it here locally, then I will post it on Facebook, in my personal newspaper and on my blog. I have a "Press Release" from a project, that is really a vital program for research in many different realms of chronic illnesses and/or pain. I've participated two times so far, after they "found" me. 

The 1st time, I guess we did not do a news release, but they have this time. I was so thrilled about it, because I always have to sign a NDA (non-disclosure affidavit) each year they ask me to do my part. I want to share it, not just because if it being "me" but MORE to show ALL OF YOU, HOW YOUR INPUT, YOUR ADVOCACY, WHETHER ONLINE, emails, a blog, Facebook, Twitter, or however you may help out when it comes to activism DOES MAKE A DIFFERENCE! I've done advocacy and activist items now for about 5 years, for different organizations and in different realms. Some of them, really in depth, like getting to go to Congress in Washington DC with the Arthritis Foundation, or posting blog articles, or my Facebook things that I read, post, and try to help provide viable and possible solutions for so many of us, that truly need to be helped, whether through knowledge (which believe me KNOWLEDGE IS POWER, ESPECIALLY WHEN IT COMES TO YOUR OWN HEALTH, ILLNESSES, PHYSICIANS, SURGERIES, and all types of medical needs we step into during life.) I found out that although "some doctors do not like "educated" patients' MANY OF THEM are extremely happy to see patients taking an initiative to reach out, look for answers, make lists, ask questions, and not sit back and just rely on what our physicians tell us. 

LIFE and PATIENTS are too many and too busy, and our medical people NEED us to know all we can... so it saves lives, even our own. If you KNOW your medications, what you take, what you are allergic to, or have an idea about all of your medical issues, your surgeries and symptoms that are due to either a chronic medical illness such as RA or Lupus. Or if you are diabetic, you KNOW your own body, what you CAN eat, how to keep your blood sugar evened out, or other medications, know the side effects, understand when you NEED to call your doctor, OR when that side effect may not HURT you or even after a few days go away, rather than trying to call a doctor's office, and either stop the medication or go on taking it when something may not be right about it. I can almost go in when one of my joints, or my spine, or my muscles, or tendons (since MUSCLES CAN BE TIGHTENED BY EXERCISE) and TENDONS HAVE TO BE SURGICALLY REPAIRED OFTEN TIMES BECAUSE THEY DO NOT GET TIGHT AGAIN, LIKE A MUSCLE MIGHT...

That is why when you have a "torn rotator cuff" in a shoulder, you "may" strengthen the muscles, but if those "tendons" that make up the rotator cuff are too lax, or torn completely away from the bone itself, surgery may be the only option to get back mobility, strength, get rid of pain or much of it, and then strengthen the muscles after the tendons are repaired. You would be shocked and I know even ...

I recently began to totally "understand" the true difference between tendons and muscles. I "asked" the question, and my foot specialist explained it to me... like a rubber band may "stretch" like a muscle... but if it is attached to a board, and you actually tear it away from that board, no amount of exercise will give you back the loss from a tear. I now also realize WHY when someone TEARS TENDONS in their foot, or leg, it takes MONTHS AND MONTHS EVEN WITH SURGERY, to get that tendon "healed". It has to "attach" back to that bone. So, like my shoulders, or my left elbow the "severe tennis elbow" I had was "torn" away from the bone. My orthopedic surgeon attached the tendons back to my bones, with screws, nuts etc... BUT it took a long time for that tendon to actually "grow itself" back to the elbow, and often times, they don't attach back themselves, that is why, so often you never can do some of what you did with that shoulder, elbow, ankle, and so forth as you could at one time.

Before I broke the hip, I had just about made up my mind to try and snow ski one more time in my life. That used to be my "birthday present" the week of my birthday for many years.... but after the replaced knees, and the shoulder replacement, I felt maybe I should not chance "wrecking" one of them again. But, I had decided I would give it a try once more... and thought about making a trip to Santa Fe NM, I've skied there as well as Wolf Creek Pass that I LOVED! 

But Santa Fe has lots of new courses, and much more to offer than they once did, and it is about 7 hours closer than Pagosa Springs, CO where you stay to ski Wolf Creek. But, once the hip was fractured, I then knew there would be no way I would try to ski... not really because of the break of the hip BUT a fear now since my bones are so severely taken away with osteoporosis, my fear would be to "break" more bones, or another hip, or injure my back worse, thus my days of skiing are over with. I have great memories... and in fact yesterday when I was going through looking for the photo's with the fish, deer etc... I started to scan a pic of me, when the "big hair" craze was in... Gosh I wished I still looked that young.... ;) Alas time has become somewhat of an enemy when it comes to skin, aging, and how our lines, wrinkles and so forth seem to develop out of nowhere.....

Monday's seem to "hit" everyone in some type of lousy way, no matter who, where, when or why it is what it is.... & throwing our Circadian Clocks OFF

Well, between Monday's usual errands etc, I think I finally got caught up on my WEGO Health Bloggers Month Long Challenge! I am still NOT feeling all that well. I know part of my problems with feeling lousy is because I have "overdone" it and probably WAY overdone than I care to admit. I've thrown out old furniture, moved furniture, cleaned, dusted, been trying to get a couple more of my "inside" windows not stuck anymore. I have "storm windows", but before they put them on, I did not get a chance to really make sure the inside old windows were not painted shut, or just plain stuck because of the age of the home. So, it has taken me several months in all to get about 11 or 12 that I can open up the inside windows and then get to the storm windows and open them when the weather is nice, and get inside, in between those also... I have one very, very STUBBORN ONE over my kitchen sink. I finally was hurting so badly I sprayed it down with WD-40 and left it last night. I've not tried it yet today. 

We have really wet, dreary, weather so the wood is also swollen which makes it harder to work with. Then I spent an hour or more yesterday trying to get the small "cracks" sealed up on my front storm door. I had some of the rubber put on the bottom, but it was not really long enough, so I put a new strip on that has the longer rubber on it. Then I had to put one on the outside, plus put a piece on the side where the screen latches. This house has settled so badly, that it also why I have issues with these windows. It needs to be leveled, BUT THE COST OF HAVING THIS HOUSE LEVELED NOW PROBABLY RUNS ABOUT $15,000.00! It was about $10M when we checked on it years ago. They have to get under it, pour concrete posts, then take out the old creosote posts that are under there then try and shim and level it up. It sucks also because this house happens to be on ground that has room to get under it on one side, and then the other is very, very low to the ground. It would be a nightmare.... it was not a true "peer and beam" but just more like the "beams" under it. 

There is SO much that needs to be done to the house, that it makes my head hurt and spin just thinking about the cost of some of those things, like the foundation, and a new fence in the back, that requires cutting down trees MY NEIGHBOR NEVER CUT DOWN WHEN HE PROMISED HE WOULD AFTER TAKING A BUILDING DOWN THAT WAS ON THE PROPERTY LINE, TO BUILD A BIG HONKIN' GARAGE THAT IS LARGER THAN MY OR THEIR HOUSE, AND LEFT THE TREES, ONE HUGE AND ROTTEN. Half of it is laying in my back yard.... and that expense is astronomical to have someone cut down those trees. Some of them are small enough I can get rid of most of them, but about 3 or 4 someone would have to come in with a chainsaw to get them down. As MANY things as I STILL DO, ANYTHING TO DO WITH A CHAINSAW is where I DRAW THE LINE! I do okay with my "pole trimmer/cutter" and most everything else, but the "saw zsaw" and any kind of chain saw I know I would never be able to handle. I've lost so much strength in my arms, hands, wrists, especially my right one, and my fingers, thumb and hand is so swollen it almost kills me to sit and type. BUT, I make myself, so I hope that they don't get even worse, which I need to go back to my Rheumy. 

The MTX is NOT WORKING. and in fact I stopped taking it as of today. I was taking it once weekly on Monday, but I decided it was not worth it, since it's not doing a thing for the RA. It is much worse in my hands, fingers, thumbs, and now my neck, and lumbar spine and hips are just "on fire" they hurt so badly. So, I hope we will try Xeljanz next, but I am not liking my Rheumy's NP at all. She is wishy washy and said that was what she would do last time I was there, and then went back to the MTX after my Rheumy had stopped it a year or more ago, at that time due to me having so many infections.  I NEED the cervical neck and lumbar spine surgery..

A great deal of my pain I feel is due to my spinal issues. But, there are times just like when Mom became so ill, I had to put off having those surgeries, because she needed me during those months. I could not have helped her, had I went ahead with cervical neck surgery, and/or lumbar sacral surgery. So, we do what we can do in life, and at times that means putting up with some unpleasant times, and things. Hopefully making the "sweeter" pieces all that much better!