Advocacy Summit: Virtual Summit | Arthritis Foundation

Advocacy Summit: Virtual Summit | Arthritis Foundation

Chronic Pain, Illness, Medicare, Disability, Medicare Advantage Plans and the Government Telling Our doctors how to treat us as Patients! WE MUST stand up and make things CHANGE!!!

I didn't get to mention this yesterday due to all of the "drama" surrounding my pain pump ordeal, so I will mention it today. While my pain doctor was working to refill my pump, we began discussing Medicare, medications, insurance, etc. Come to find out there were some people that switched over to a different Medicare Advantage Plan offered by United Healthcare, which AARP endorses. Well, I did my homework for months before switching. I had the Humana Medicare Advantage Plan for several years, well in fact ever since I was put on Medicare. Here in Texas, someone who is put on Medicare "disability" before the age for retirement, has an extremely difficult time getting a regular "supplement" to Medicare. About the only way you can get your "Part B" and drugs covered is by taking a "Medicare Advantage Plan".... so that means you "give up" your regular Medicare benefits, and you take one of these... there are not that many, Humana and United Healthcare are the two main ones. So, that means your choices are very narrow. I worked for months checking out the United Healthcare plan before I switched on January 1st. I got online, added all of my doctors, added all of my medications... to see if they were covered. I also called United and spoke to a gentleman there, that stayed on the phone with me about an hour. We again, went through my doctors that I presently see, through all of my medications, including the Orencia. At the time last year, Humana did NOT cover Orencia. So, I had to get it through the pharmaceutical company, which we know is time consuming and full of red tape paperwork, for the patient and the doctors. I had finally gotten on it, but then at the first of the year, they wanted to redo all the paperwork. Well, after I jumped through hoops for weeks, calling them, finding out what they needed, faxing paperwork to my doctors office, faxing paperwork to the Pharmaceutical company, I come to find out that United Healthcare DOES COVER the Orencia. So, then I had to get the "prior authorization" again from the doctor, but after about 4 weeks of being without my medication, it was finally approved and in fact they sent me 3 months of Orencia. So, I don't have to jump through hoops, and should be good until next year as far as that goes. BUT, now we have an issue, that it seems the Orencia is not working. In fact Rheumatologist called me a week or so ago, and I had told him in an email that I was not better, so he doubled my Prednisone to 10 mg daily, which I really hated to do, but it sounded like it maybe a way to see if that would help the inflammation. Anyway, onto the subject at hand. As my doctor was refilling my pump, he asked me about my United Healthcare Plan. I told him it was one that that had told me they would take, so it was the one I chose. I was very worried about them paying for the pump refill. but, I guess it got approved. BUT, HE told me, that some of his patients that took out a "Unitedhealthcare" Medicare Advantage Plan policy, got a "new card" at the first of February, and that their pump refills among other things were NOT COVERED!!! He said about 20% of the patients on these plans somehow got screwed over, and now they can't get their pumps refilled by him!!!! So, when I told him about going to the Summit in March at the end of the month, he told me to tell it like it is, and tell them how badly they are ruining things for patients, doctors, and putting patients lives in the throws of jeopardy. It seems somehow they automatically "switched" some patients from the plan they thought they got, and then got new cards, and it was NOT the plan they thought they were getting!!! This absolutely has to do with Medicare, the Government, and also not just Federal Government but our State governments also. I should be able to get a "Medicare Supplement" just like anyone on Medicare, but here in TX, they "make you" almost take the Advantage Plan instead. Even though there are about 8 or 9 different types of supplement plans, all in letters like Plans, F, G, O, etc... and they are some more expensive because they cover more and some don't cover as much, so those plans are cheaper. None of them are "cheap" but then you are not dealing with many doctors who are refusing to take these (MAP) due to them not getting paid!!! He told me before there were a couple of patients he did very expensive surgeries on, like an implanted pump, and it took him over 2 years to get paid and then he had to go in front of a judge to get them to pay the bills. No doctors can continue to see patients and keep afloat financially if they are having to wait, 3, 6, 9 months or more to get paid for services!!!! It is crazy! So, he looked at my Insurance Card, and said I was okay. But, he said again almost 20% of the patients he sees are on these plans, and this one in particular they won't pay for the pump refills. Also, I asked well can't they just pay cash and have you refill them! He said as far as he knew and he does NOT know why, but NO, if those types of plans do NOT cover something, a patient cannot "pay" out of pocket to have it done!!! NOW HOW STUPID IS THAT???? What difference does it make, if the insurance won't pay, then they patient should be allowed to pay for it!!!! Things are going to get much worse before they get better. I fear I maybe facing either hip surgery(ies) or finding out I have compressed discs in my back from the osteoporosis or something is going on. My pain levels have just shot up immensely, and it seems we cannot get it back under control for some reason. Something is causing my problems, and I am sure it means X-Rays and CT Scans to try and see if something is going on... I cannot have an MRI at all, so that makes it a bit harder. Anyway, he always keeps up with what is going on especially with Medicare, the Advantage Plans and the government..... many doctors don't really keep up so they have no clue what goes on with patients and trying to get things covered!!!

I am totally fed up with it all. It seems every day I battle with these ridiculous headaches. There for a good while, I went for months and months and the only "headache" I would have is a Lupus Migraine, as I called it. I could go in and see my PCP (and in fact I see him tomorrow) have an injection of a corticosteroid and within about 24 to 36 hours the headache would be gone. I've had almost a none stop headache now for at least 3 weeks. As long as I don't move around a great deal, and are not up doing things, it settles down. Yet, as soon as I am up and moving around, or even setting here trying to type my head is just pounding. I've yet to understand why the very sudden change in the headaches honestly. I've tried to research it out, and of course since I've had migraines off and on all my life, there maybe times I go through this process of having them and the they go away for awhile. 

New News on the "News" Page of My Blog!

I added something kind of cool to my "News" page. You can go to the URL listed there and see how the weather maybe effecting your Arthritis and Joints, Pain!

Life In A "Goldie Locks" Kind of Cinderella Fashion - Then realizing what was back then was a "view" from a childs eyes...

I've done quite a bit of posting, writing, blogging, and more posting today. More than I've done in quite a while for a change. It just seemed like since the weather is making its turn here in my neck of the woods for what sounds like worse for wear, the dreary, rainy, cloudy, soon to be falling sleet and freezing rain shall cometh as the day gets into the late afternoon and evening.

I've put some things up here, on my blog, along with some posts on Facebook, several "Tweets", and some Pinterest postings along with the entire thing also have kind of brightened up my pages on those places that were beginning to feel more staggered, than normal. Of course I go through sometimes even a week or possible almost two weeks, that living daily life, tends to be erratic, errand filled, running hereth, thereth, and yonder... and feeling too worn for wear, when it comes to being online, or even on the computer to write in my book. It comes with the territory of having some of the chronic illnesses I live with. They at times seems to inhabit more of my body, mind and spirit, than just "my own self".

That may sound a bit crazy, and with the amount of issues lately with brain fog, pain, forgetfulness, and sometimes feeling just beyond the point of lazy thus I see at a breaths space, that without my watchful eye, Lupus, RA, Sjogren's, Raynaud's and the rest can slip up behind you when you least expect it and take over your body, heart, and mind much like some alien force that presented itself from a foreign planet.

As I was taking a shower earlier this afternoon, and thinking about my life, it dawned on me how things are so very different now. When I say that I mean more of my own perspective about my life in a very personal sense. When I was growing up in the 60's and 70's... little did I know how much influence my younger years would have on me, when I was 50 and over.

Back then I never gave thought to "money". Of course I knew my family were not "rich" or even very affluent. I always lived on the "other side of town". The North part of my hometown is where the larger homes were built, mostly brick, and were a great deal much more expensive than the small little 2 bedroom, 1 bath room wooden home I lived in. In fact, I was born, raised there, and my Mom after all these years still resides in that exact house. So, it is truly "home" for me.

Mom was about 25 years old when I was born. I get the impression she never really "dated" all that much before her and Dad met. He happened to be almost 13 years OLDER than her. I guess back then, age like that was not all that huge of a factor. Most women in the 50's and 60's were home makers. They took care of the kids, house, cleaning, cooking and so forth. The Dads, Husbands were the "bread winners". They went out into the world and make a living for the family. We always had two vehicles. We usually had a "good" used car for Mom to drive me to school, to the market and errands. Or if we went on vacation we usually went in the car. Dad just about always had a truck. He began with a Chevrolet and the last one Mom traded in after he passed away was also a Chevrolet. Dad bought a brand new pickup about every 5 to 7 years. Mom had worked until I started school. When I began 1st grade she stayed home and Dad as I said was the provider. Dad and Mom were both born and somewhat remember the very "harsh" times of the Depression. Dad of course, much more than Mom. He was born in 1923. He remembered outhouses, no indoor plumbing, wells, hoeing cotton, having a farm, garden, chickens, cows you milked, flour in huge cotton sacks (Mom remembers that also. Her Mom made them underwear out of the flour sack material)!

As the years went by, of course my entire "adult" life was somewhat different than my parents. I worked almost the entire time, from the day I graduated early from High School, until the day I resigned my last job in Seattle due to health issues, I always worked. If I had relied on money coming in from either of my first two husbands, I would have never financially survived. So, things that my Mom never taught me much of, working outside the home, clothes, makeup, and all of the "girlie-girl" things... having your nails done, having your hair cut differently, even having a bit larger home, a new car, 2 kids, rather than like myself an only child, and then allowing my kids to kind of "learn their own way" around the world. I taught them how to take care of themselves. I wanted my daughter to be able to be "her own woman". Never did I want her to have to rely on some guy to take care of her. I never wanted to feel she had to "stay" in an abusive relationship, or put up with someone not treating her like a woman should be treated, due to thinking she "had to" stay. Of course I wanted both of my kids to learn how to stand up on their own two feet. But, all the time I worked and was out of the house, I also needed them to be responsible enough to come home after school (when they were old enough), do their homework and chores, and be there when I came home from work, college or both.

My Dad never wanted me to "play in the band", or try out for any type of extra things in school. He was so strict, he never allowed me to go to football games like the other kids did on Friday night. And by the time he finally DID allow me to do a few things, he would either have to drive me there, pick me up, and was just so very overprotective of me. How I ever learned anything as far as taking care of myself... was either through an innate nature I was born with, or because I had the dearest next door neighbor who took me under her wing, and taught me so much, from crocheting to being a candy striper at the hospital...  all of the things I learned were from her, or from my own trial and error.

I guess I thought life was kind of the way Mom and Dad lived it. He came home from work for dinner (he worked nights for the most part when I was a teenager), and unless he "okayed" me going to my cousins house for the weekend, or her coming over, I was alone with no siblings anywhere near close to my age. I have a half-brother who is 18 years or more older than me. My Dad was 37 when I was born, and my Mom 25 years old. So, I guess they decided that after Mom had a couple of miscarriages after me, that having one child was in their cards.

As I had said in the beginning of this, being "affluent" or having money was something as children we don't think much about. Or back then all of that type of thing was not talked about around me. I raised my kids so much differently. They knew the "value of a dollar" at an early age. I wanted them to be ready when the time came to face the world head on. Not like myself, who was hit right in the face by the time I was 19, had my son, and was paying all the bills myself.

I don't resent that my parents did or did not do things a bit differently. But, I do often wish, they would have given me "eyes" and a "mind" earlier in life to accept so many of the things that life hands us, and if we don't have the understanding, we are not able to deal with it so well.

Dad hated doctors, and hated medications. He just refused with the exception of when he was extremely ill, to see his doctors, and just would not take the medications they gave him. He thought it was all a bunch of bull, and any medication you got on was almost like a sign of weakness. So, when I began to have severe migraines at 17, little did I know just how horrid the next 15 to 20 years of my life would be. From doctor to doctor, from time lost from work, medications that did not work, and Dad never really suffered a "headache" of any kind. So, he could not "get" what a "migraine" was, and why I needed medications for them. He would get almost mad if he knew I was on medication. His Mom back when he was very young, had been ill probably with cancer back then. The only thing they could do in those years was keep someone comfortable, and that usually meant morphine. I those times no one knew that "morphine" was habit forming etc. They knew it helped with pain relief for bad pain, and the doctors gave it out to those that were in bad pain such as cancer. Well, I guess probably my Dad watched his Mom go downhill, and then between the medication and the cancer she was not "lucid" at times. So, he thought that "any" medication could cause you to "lose your mind"... and he definitely did not believe in taking any type of pain medication. So, there were times I just could not even tell him about me being home sick with a severe headache, or the many times I was in the ER with one so bad they had to give me IV medications just to get rid of it.

Even back then, as young as I was, I had joint issues. It began with an accident playing baseball with some of my cousins, and I got used for "2nd base"... and the torn meniscus had to be repaired in that knee. I spent 7 days in the hospital in traction after that surgery at 15. By the time I was 21, I had a 2nd surgery on that knee, and even then I was showing signs of arthritis. Yet, the doctors just didn't put two and two together... to see there was probably much more going on that just a knee injury. After that I began to have various joint problems. Pain, stiffness, severe pain, freezing up, until I had a shoulder, an elbow operated on, and after that, I underwent several more scopes on both shoulders, knees, and then of course replacements of my knees and my right shoulder.

Life for me as a child was days of playing alone outside in the good months, with my dolls, my table and chairs, and as I said, not knowing what really was going on through those years. Even in my teens, I just knew I had an overly strict Dad, that never allowed me to "spread my wings"... he didn't even "encourage" me to go to college... yet I did go and finally got my Associates Degree after years of going at night after work, to get my degree. I am told I am an incredible oil painter, and loved taking those lessons. I took piano for years, and loved that. Even the vacations that my parents took me on, they were nice, and I am glad they took me, but after I was grown I got to go snow skiing, go to Vegas, went to concerts, to Hot Springs, and did many things that my parents never would have tried or done.

We always want to love and "shelter" our kids from the harms of this world. But, if we "shelter them" too much, then they are not prepared for what the world holds later... and all of us know now it just gets worse with each passing year.

My Dad never understood cable TV or Dish, he never understood a cordless phone, or a CD player or DVD player. He certainly did not get a cell phone, computer, or much of anything that was "electronic" in nature at the time all of the digital, cell, and those types of things came out.

I will end this for now, on a note, that I am not upset, nor do I blame my Dad or Mom for where I feel I may have not gotten as far in life as I wanted, when it comes to things I wanted to do, places I wanted to go... and thank goodness I didn't raise my two like that. They "get" the world... but I just hope that people give their kids what they need, that will help them grow into caring, loving, and knowledgeable adults, that can "conquer" anything, and not be scared to do things in life. I felt kind of "shut off" from the real world back then...

Reminders of How you, A loved One, Or Someone Else you Know maybe able to get assistance with medications & other needs for Arthritis

The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.

These are but a few of the pages from their site that can help in so many ways. Be sure to check out all of the different pages, information, how you can help yourself, a caretaker, family, friends, ... from medications, to healthy eating, exercising, doctors, tests, and more... this site really has a huge amount of great information for everyone. 

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/drug-specific-patient-assistance-programs.php

Drug Specific Medical Care above - like help from Pharmaceutical companies.

Above can be actually getting the medications needed from the Pharmaceutical companies, or help with a high co-pay and so forth.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-your-medications.php

Above is another list of places that you may find financial aid for medications, or possibly to see doctors, and other types of assistance.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-medicare-and-prescriptions.php

Above you will find some state agencies and/or local & even possibly Federal assistance for paying for your Medicare Part B and/or a reduction in the cost you pay for co-pays on prescriptions.


http://www.arthritistoday.org/arthritis-treatment/medications/drug-guide/

Above you can go to this URL and find the names and information on the medications themselves for arthritis and arthritis related illnesses.

http://www.arthritistoday.org/tools-and-resources/tools/lab-test-guide.php

Above is where you can find out about lab work you may have done, and what some of those tests are for, and what some of them might be in order to understand more about what the physicians are looking for when they do lab work.


http://www.arthritistoday.org/about-arthritis/arthritis-and-your-health/

Above this link takes you to where you can find out more on arthritis, symptoms, how it effects your other body parts, other illnesses that can often be related to arthritis, and how you can help to keep your own body more healthy. Lots of tips on the site for everything, from eating well, to the proper types of exercise, and how to do what you can to help yourself maintain a "quality of life".

http://www.arthritis.org/

Medicare Reform - NOT for Just the "Elderly"!

I join in this for several reasons. One of which is that even though many of us at the time when we are much younger in life, never think about needing your Medicare and Social Security benefits. You are working, raising a family, and everyone seems "healthy"... so needing something such as Medicare does not even probably come up unless you are talking with your parents, the elderly people, on TV or in the news. BUT, I can also attest, you NEVER KNOW WHEN YOU will be the one that needs Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift??? Life can turn on a dime, and all of a sudden you are saddled with a chronic illness that no longer allows you to work. So, where do you go? Eventually you may lose out on your insurance as far as health wise, and possibly not be able to even make a living, much less pay for high medications, doctors, tests, hospital stays... and you are in a place of living hell!!! It can happen and IT DOES HAPPEN!! I am walking (sometimes crawling, Living PROOF) that life is not always what it "should be".. or what you thought it would be... withing a breath's space, things can change... and when you are needing Medicare the very MOST in order to just have the vital doctors and medications to sustain you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or more medications some of which are 300.00 or more a MONTH!!! There is NO WAY most anyone can afford to pay out of pocket... so we need change.... change for the ones growing up and working now... in order that when they retire, Medicare and Social Security is still there for them. OR in a month, or year, or a few years down the road when all hell breaks loose, and you find yourself too ill to work, too broke to afford health insurance, and you need "those Medicare benefits"... that is when it will dawn on you... Gosh I wished I would have stood up for CHANGE!!!!!

These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!

WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!

http://fixmedicarenow.org/patients/

Sjogren's, Dentures and the Ordeal of the nightmare money wise and pain wise to get "new teeth"...

Some Photo's of Me Recently after getting my dentures - I had never been one to smile in any photo's. I always hated my front teeth. I had "genetically" inherited my top two front teeth being "large". My Dad, my half-brother, I, and my son... and I am sure some of the other family on Dad's side all had the same. Plus my bottom teeth were not straight, and I had a 4 wheeler accident at 25 yrs old, that snapped the bottom half of one of those top front teeth off. I had it "built onto" and it stayed like that until earlier last years 2014, when Sjogren's took my teeth, quickly and quietly. It seemed it quietly came into my mouth, and within 4 months literally rotted about 8 of my teeth from the inside out, just leaving a "shell" that then broke off at the gum line. After having that happen about 4 times within 2 months, I went to see another dentist, who did a "surround" type of X-ray that showed just about every tooth I still had were also going to do the same thing. It was just a matter of a brief few months, and all of them would be falling out at the gum line, leaving me to have to have them pulled. So, I began to "weigh" my options that honestly, were slim to none. Even though it is an "illness" that literally rotted my teeth, and had nothing to do with my own dental hygiene etc... I could not get my insurance to pay one red cent on any of the massively expensive and time consuming work it would take to get me over the "Sjogren's rotting teeth" out of my mouth.

You are talking about somewhere in the neighborhood of 10,000.00 to actually more like 15 to 2o THOUSAND DOLLARS of dental work. I had to have ALL of the rest of my teeth pulled. Then due to my bone structure , the Sjogren's, the medications I have to take for the RA, Lupus and so forth, had also had its finger in the loss of every tooth in my mouth. That began about February 2014, and I still am not completely finished with the entire ordeal. After pulling sets of 5 to 7 teeth at one sitting, then they made my dentures, and pulled every last one in the top and bottom that had been left up front and visible. So, that was 11 TEETH in ONE sitting, and then they put the DENTURES RIGHT IN OVER THE TOP OF ALL OF THOSE STITCHES AND PULLED TEETH!! Surprisingly, it was not as painful as I thought, but for weeks and weeks and weeks, and even now I struggle about eating. There are certain things that in no way can I bite into or eat. Most everything has to be finely chopped up, even tomato and lettuce. I have to tear most things apart  in extremely tiny pieces. With the dentures I also don't have as much room in my mouth as I used to. Plus, I still lack going back and having "mini implanted little screw like devices" put into my lower jaw in four places, so that my bottom dentures will fit securely on those and not be moving around all the time. There is no way, I can keep them in place, without having those put in. So, that is another at least 3,500.00 for the four little pins and then adjusting the bottom dentures to fit down over those pins when all is finished. It is pure insanity, money wise, time wise, pain wise and the amount and length of time it takes to complete the entire ordeal. So, now after so many years of wishing for "beautiful teeth" so I can smile, I have them. I just never figured it would be because of some disease that ruined my own, and I would have to deal with a full set of "false teeth" or dentures. So, when you "ask" for something, you may get that "wish" fulfilled someday. BUT, remember it may NOT BE the WAY YOU HOPED for IT TO BE! So, here are a few new pics since my dentures have been put in.   

LOL!!!! Notice I STILL have a difficult time "smiling"... so many years of not because I hated my teeth... so breaking the habit is hard to do.  Rhia













                                                  

WEGO Health Awards Judging, Chronic Illnesses, Pain & The Brave People That Find the Strength and Courage to Talk, Blog & Write about it

As I worked on my WEGO Judging over the past couple of weeks, I've found that there are some incredibly strong women (and men) out there living their lives everyday, with one, two, three and more chronic illnesses, syndrome, and pain. They have also been through the HELL of hospitalizations that lasted for months, endless surgeries, transfusions, being not even able to eat and being fed through an IV (as I did in 2010), and some of them like myself, at that time the doctors really DID NOT KNOW what was wrong with me. My own PCP has made the statement since then on several occasions that he was extremely concerned back then I was going to die. Endless numbers of specialists came to see me... most of them were of a foreign decent, and frankly I could not understand what they were saying to me. Many of them at the time, didn't really know what the hell "Lupus" was. They blamed some of my illness on the Lupus, yet, they also were treating me for what they told us later was a "collapsed" bile duct. It was literally leaking poison into my abdominal cavity, rather than it going out of my system and being filtered out by my intestines, and out as it should. I had several "tubes" running outside of my right side. Later I had to even come home with them still in place, and we had to watch the fluid that came out into the bag, to make sure it was becoming more "clear" and not bloody etc. I went through that for several weeks. For at least 6 weeks I never put a drop of food or anything to drink in my mouth. There was a huge bag of "nutrients" that was white, and I was told it was a certain concoction mixed up by the pharmacy for me. I went through nights that I barely knew where I was. In fact, I spent mt 50th birthday having yet another surgery. Jim, my son, and my Mom were there because they had told me to "call my family" in, "just in case".... "Just in Case"???? I had at least 8 or 9 other IV bags hanging and pouring into me, pain medications that I watched the clock for and begged each moment I knew I could have more.... I really have never "told" this entire story, from start to finish, here or on my blog. I have put bits and pieces about it over the years on both, as well as it will be in my book. It took my system weeks to even be able to withstand a regular sip of "Coca-Cola in it. It would put my entire stomach and intestines into a "tailspin" and the next thing I knew nurses had to come in and change my entire bed, put me into the shower (dammit they never warmed it up enough and this was the middle of February and one of the coldest Winters in TX since I had been back).... any thing that was "food" "stunk" to me. Jim would go and try to find something I could stand to even remotely put into my stomach, and even certain kinds of bread smelled so bad to me there was no way I could take even a bite. Why I am telling this now here, I am not sure. Probably due to one of the blogs I read over the past few days, and her own battle with what later was diagnosed properly as Crohn's. But, more than that, it seems each year that February rolls around, which my Dad's birthday was on the 2nd, Ground hogs day, and mine of course just passed on the 15th, almost a Valentine Baby.. and it brings all of those weeks and weeks, and honestly months back into my memory. How ill I really was, and how it truly it is a miracle I am here today to type about this.... so ALL of you... everyone of you that have the stamina, bravery, the "guts" (no pun intended), the wear with all, strength... and many more descriptive words to say how incredible you are to tell "your" story. Whether it be autoimmune in nature, arthritic, FM, MS, and all of the other Chronic Illness and Pain so many of us endure... so WE can go out and tell others "it is okay"... you are still you.... you are not "less than", that life can be full, and fun... you just have to sometimes decide upon a "new kind of normal"... that is what I have to do, and even now... "normal" can change at any given time... I am THANKFUL, to be here this morning and able to tell a portion of my story... and I am thankful for my family, my spouse, kids and Mom, that support and love me, even though I feel like I disappoint them at times... and my true friends here that also love me for me... sick, well, mad, depressed, happy, or whatever I maybe at that moment, those out there know I mean you... that support and love me unconditionally, with Lupus, with Sjogren's, now with dentures and not my teeth, with the joints replaced, and the pain pump hanging from my right side... I am still "me"... and I feel blessed.... thank all of you for accepting me no matter whether brain fog hits, or I find myself on the sofa for the day, or I am up cleaning and doing "normal" things.... I am blessed.

How to find "Center" - Deal with "Disappointment" - and Feel Like You are "contributing" to Life, when AI illnesses try and take over...

Not overly thrilled this morning. My Pug woke us up about 4:00am sneezing! I bet she sneezed 25 times. I got her over to me, and pinched her nose really softly, covered her up and started rubbing her head and neck. She finally stopped sneezing for a bit, then began again. I decided to just wrap her up and put her out on the sofa, and I would stay out there with her. Then of course my other one Bubba, was crying, he wanted out there with us. So, I got him, and wrapped him up in the bends of my knees like he sleeps all the time, and FINALLY they both went back to sleep. I tried to, but then I thought it appeared to be getting light outside, so I went to get up. Then headache and nausea hit me all over again. So, I went and got the last little drink of "coke' (the original full Coke will most of the time help my headache and also settle my stomach some). I didn't have much left, so then I poured me a glass of green tea, and debated about getting back on the sofa. I had been on the run yesterday part of the day, and it was also my Orencia day. Not sure if some of that made me fatigued and not feeling well or what. Anyway, I went in the afternoon around 3:30 om and had my hair trimmed back up so it would style correctly. And she sprayed a bit of some kind of hair spray on it. I don't use much hairspray and the one I have I use mostly because I love the way it smells. But, whatever she used, really got to me. Even though she didn't put much on, right away I began to feel the headache and of course then the nausea coming. There are certain smells, even in really good perfumes and so forth, that just don't settle well with me. I guess due to having migraines all my life, and now that my stomach really acts up so much, the combination of the two just put me in a fluster last night. Then the dogs, didn't help.... having to tend to them... just like kids at times, I was up a couple of hours getting them settled back down. Now today I feel like I am paying for it. For some reason, and I am not really sure exactly why, I am just having a heck of a time "dealing" with life in general. Not feeling well makes it worse of course, but I am not really depressed, but I am just not really thrilled over anything at this moment. I think I got bummed a bit about the weather being so crappy and we didn't get to go to the Casino last Sunday, may be part of it. Plus I just feel as if everything I attempt to do, either takes me forever, or like a shower, sometimes by the time I take one, get out, dry my hair and get dressed, I feel worn out and it seemed to take 8 times longer than it used to. I think I was hoping for 2015 to be so much better than the past year. And for sure, it is nothing like 2014 at this moment. But, I believe I thought I would have MORE GOOD days, and less bad ones. I think I was wishing for the entire ordeal with the wreck to be over and done with. The thought of having to drag out this "lawsuit" crap another almost year, really is not settling well either. Even though it does not actually in many ways effect our "daily" lives, it does in others. I feel we are in a "holding pattern" not knowing what will happen if anything, wanting to get the mess over with and not have to even remotely think about dealing with a trial... that could drag things out even longer, and the longer that drags out, the less our lives feel any type of "normal" to me. Even though it has probably been more of the "economic state" of our nation that has effected Jim's clients, in many ways, I know we are losing a couple of clients more than likely due to some ways all of this effected how Jim tries to work. With all of his own pain, and dealing with his balance, he can't drive, and who knows when he might, if ever, along with all that faces us both, it just feels like we are totally unsettled every day that dawns. I REALLY wanted us to go to Vegas for our wedding anniversary. That will be in April on the 6th. It will also be 10 years of Dad's passing away on March 27th. Time flying by also really is getting to me. Each day that I don't feel well, means another day I don't get to live my life to the fullest I want to... (wow, I just have this eerie feeling of deja-vue) like I've written those exact lines before, in the exact place... wow that is a strange feeling for sure... each and every element of our lives have been ripped, torn, mangled, and we try every day to find some kind of "normal" again. Yet, there is not one thing normal about life for us really whatsoever. I am truly pissed at myself, because of all the things I've wanted to do in 2015 the number one was to finish writing my 3rd book. I find myself, either not having the time, getting interrupted with other stuff, then it takes me forever to get to where I left off, and when I finally do get to write, either I feel what I am saying is boring as hell, it's not how I want it to come out, or I am all over the place, rather than focused, or I am either too tired and fatigued, or I have a bad headache, or a flare going on... the list is endless. What makes that worse, it ALL of it sounds like an "excuse" for not getting the book written. But, when I look around at our home, all the things we need to finish, that we have not been able to, from painting the outside to finishing the floors in the bath and kitchen, to completely doing the laundry room walls, to remodeling the music room... a billion and one things we want to do, yet one or both of us physically are no longer able to do.

Just as we find ourselves in a rut, in the same old place we have tried NOT to be in, to break old habits, like for me, POSTING HERE, and just putting a link from here to Facebook. Not writing it all in Facebook. That is not how I want to do things, yet old habits just don't go away overnight. Plus "this" also is something I need to put in my book. It is how every aspect of daily life is totally surrounding, or surrounded by something to do with autoimmune illnesses. Either physically, mentally, emotionally, somehow, someway, I feel these diseases rule over my way of living. People can say, "just put that aside", do some Yoga, don't worry as much, blah, blah blah... you can bet that is all wonderful advice, but not easily followed when you have chronic illnesses and chronic pain. They are like a "plague"... they just don't "shoo" away like flies off of a pie. They mix you up in a blender, or roll you around like dice, then spill you out all over the floor and you are trying to pick up the pieces and put them back together again. Believe me, Humpty-Dumpty has an easier shot at it, than the majority of us with any type of autoimmune disorder.

I can go from feeling like a thousand bucks, to feeling like a penny in the middle of a busy road. Ran over time and time again. Worse? Not even knowing why? The illnesses, medications, new symptoms, your mind playing tricks on you? Maybe you are finally just going crazy, and insanity will be the "new black" (or possibly going to the "nuts house" in your little black dress!)

Often times I want to act as if certain things in life don't really upset me, or make me feel disappointed. Yet, inside I realize that is not true at all. I am totally disappointed with so many small things in life, that I would feel as if all I did was whine, mope, fuss, gripe and bitch if I was show to how I truly feel in regard to our daily living.

I find myself disgusted with our world in general. I am also very sure I am NOT THE ONLY one either! All over this nation, and our globe something horrible is happening. People are more disgusting everyday. When you turn on the nightly news, and 90% of it is "bad", how can you not be effected by those things? I know that as population grows, of course it seems that we have more bad than good in life. The needless shootings, looting, those taking advantage of our elderly, poor, and people that may lack the education... war, let's face it, whether (and I am to the point of being sick of hearing "boots on the ground") but if they are or not, we are still very much in a constant state of "war". Hell, we are at war all too often with our very own nation. Rather than work together for the common decency of everyone, the greed, the power hungry, non caring, lack of any morals, and horrid attitude many have for their own kind, humans, is purely disgusting. We wage war right here in our streets... What makes that even worse, is often times it is family members that take their own flesh and blood, then kill themselves. I have heard suicide defined as being a very "selfish act". I didn't understand that until over the past twenty years or so of my life. Or course it is a very selfish thing to do. If you have parent's, spouses, friends, brothers, sisters, and other family members that love you; then you decide not to deal with life anymore, and you "leave" this world in a manner of taking your own life, you have now cheated all of those that love you. No longer can they see you, talk to you, be around you... you have taken away something that was so precious to them, YOU! So, it is a very horrible way to do those that love you. I know with suicide victims, often times those people are not considering that they are being selfish, they just want to end what pain they are in.

Dealing with Aging, Chronic Illness and Another Birthday today!

All of us have to deal with aging. It is just a fact of life. If we are here on this Earth, we naturally are a tad bit older each day.

I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.

When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.

So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.

I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.

This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny​ and a bit later from my son Jason Harber​ which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia