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.                                                                                                                                                   

Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life

I've been basically "drowning" in my own sea of dispare over the past several months. TODAY being the 1 year anniversary of my Mom passing away, of course makes things even a bit more "difficult" to hold my head up and move forward.

I have a close relative that talks often about "being lonely" and is alone. In other words right now there is no "one significant" other, and I totally relate. My situation is much the same. The only "significant" other for me, is Peanut, my "Holi-Terrier"... as I call him! :)

So, I get the times that you wished there was someone there to talk to, to go to the market with, to go out and grab a bite to eat with, someone to be with you when you go through tough surgeries, or doctor's appointments... and just basically someone to "share" life's up's and down's come what may.

After my last "breakup" I told myself, I would NEVER "commit" again. I feel as if there are basically "3 strikes" against me as far as very long-term relationships, and for me, that means I am just not cut out for the "relationship" thing anymore. Possibly I was NEVER cut out for it, but I was damned and hell, that I would NOT give up! Thus my 3rd one, I thought was for "infinity". Well, NOTHING here on this Earth is for Infinity! One way or the other ALL whatever it be shall come to an end.

I've given much thought to either venturing out on my own, to a club, and I tried the church situation for awhile, and I need to get back to going. After I had all of the problems with Mom, then me and my own surgeries and so forth, I just had to stop going for awhile, until I was well. Furthermore, I really feel badly stating this, but although I was a "new member".... not ONE PERSON ever even bothered to check on me, or see why I suddenly stopped coming. This is after I had "joined" the church. Frankly, since I was actually ill, and had surgery etc. it really hurt my feelings that not one soul bothered to check on me. Besides, I (and maybe it was just my own stuff) but felt like my "tidings" were not "enough" weekly. Yet, I was giving what I felt the Lord asked me to, and also being with only my income which is very low, it was as much as I could give at that time.

Anyway, not to get too deep into religion, but it left a bad taste in my mouth. Yet, I will go back, it maybe that I go to another church, and not back to that one.


I have long been a follower of "Creaky Joints" a Non-Profit started by Seth Ginsberg who himself developed a Rheumatic Illness in his 20's. Like many of us, he found there was just not enough information out there for patients and caretakers. Actually in many ways there was not a great deal of information back just a few years ago for the medical profession. I was shocked to find out how many nurses, and even Physicians knew little about some of the autoimmune illnesses, and many tied into RA, Lupus... things like Sjogren's, Raynaud's, and MANY other AI illnesses that are "joint related" yet also effect other parts of the body.

At times I felt as if I was "educating" my own doctor. So, Seth opened his mind, his heart, and his talents to begin "Creaky Joints", which recently began a new program and app actually called "Arthritis Power". I just recently got it to download on my phone, and I have it open on my computer.

As I begin the "journey" through it, I hope not only does it help me, but it gives me the
"heart" to once again write on my book, and get myself advocacy back on tract. After the ordeal with my Mom in 2016, and then her passing away only 6 months after showing signs of "Lewy Body Dementia", it was quite a shock for me, and my family, friends of the family and other family members.

So, rather than ponder this "lonely" phase in my life, after talking with a wonderful woman on the phone earlier this week, that is a part of "Arthritis Power" I was inspired to try and give myself a break, and find that "voice" that can take me wherever I want to go, whether writing, blogging, being more involved in the advocacy, activism, and Ambassadorship roles that I so love being a part of.

So, here below are a couple of links. You can go to these and find out more information about "Arthritis Power" and "Creaky Joints".....

https://creakyjoints.org/

https://arthritispower.creakyjoints.org/

http://www.pcori.org/

Patient-Centered Outcomes Research Institute

https://www.uabmedicine.org/

University of Alabama At Birmingham

"PCORI" and "UAB" both sponsors of "Arthritis Power"