Friday, February 27, 2015

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. 

Wednesday, February 25, 2015

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!

Tuesday, February 24, 2015

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.

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.

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

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.

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

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.

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".

Sunday, February 22, 2015

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!

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.

Sunday, February 15, 2015

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

Friday, February 13, 2015

The Ever Spinning World of Lupus, RA, Sjogren's and All of the Hectic Life Things to be Done

Today, like many others I have so many decisions to make, things to do or not do and put off, things I want to do, albeit before our weather goes to heck in a hand basket as the saying goes, and so forth.

I feel here it is another Friday, the weekend almost here... by the way
Hope you and your sweetheart have a wonderful day! Even if at the moment you may not have someone special to share the day with, share it with yourself and do something nice for YOU!

I have just found out that I have an opportunity to meet several of the ladies of the IFAA that I am also an Active Volunteer!They are going to DC also the same time I am for another non-profit. So, we are thinking rather than me fly out on Tuesday, which was going to be hard on me anyway by the time I land back in Dallas, then drive 70 miles home, and it will be around 10 pm ... and my night vision is not all that great. So, I could be more rested, plus come back earlier in the daytime, just after rush hour, so that would be awesome also!!! So, that is one of my decisions and I really need to make the change TODAY as far as my flight. We were thinking about going to the Casino on Sunday and maybe even spend the night. But, the weather is supposed to be just hideous. 100% chance of rain all the way there, and then even if we spent the night, the same on Monday. So, we may postpone that and go the following weekend, although it does not look much better right now.

I wanted to stay here at home today, and in fact gave up a chance to go ahead and have my hair trimmed, but I was a bit worn out, plus have my head spinning in about 30 directions. I NEED to begin getting more and more writing on my book completed. It seems there is something everyday that takes my mind away, so I am either gone physically doing something or I am mentally too tired by the time I can even get to the computer.

So, life goes on and on...  here is a post from Facebook I wrote talking about time, and just how quickly it passes you by....

Before things get to hectic! I have about 25 "irons in the fire" right now!:) I wanted to wish everyone a very nice Valentine's Day tomorrow! I happened to have "almost" been a Valentine's Baby. My birthday is Sunday on the 15th! Not really loving the fact I am "half-way" to 60... yuck that sounds old! Yet, I feel my "work" here is not completed thus I must accept the fact, the only way to be "here" on Earth and do what I love is to try my best to accept that each year will make me a bit older. I also hope that in with that age, I continue to "learn something new" every day, and my hopes are that I will be able to somewhat have a bit relief with the right medications from the Lupus, RA, Sjogren's and so forth. Even if it means surgery down the road on a couple of joints, if it keeps me up and on my feet, then I will be a happy camper. These years seem to have just flown by too quickly. Jim & I celebrate 10 years of marriage in April! It seems like yesterday we met on Alki across from Seattle, overlooking the "Sound" and all of the beauty that is there. I still miss it and always will. I seemed to be "healthier" there than any other place I've been to. Not sure if that was due to the weather and climate, or if I just had not gotten into the horrid symptoms of the autoimmune illnesses. Unfortunately, I had lost my job, right after Jim and I met. Actually I resigned. And that was really due to ongoing health problems, mainly Migraines and severe conjunctivitis. I could not get rid of the eye problems. Each time I would heal up, in a couple of days it would re-appear, and since it is so contagious, plus I would not have been able to do the type of work I was doing at the bank there, I began to miss lots of work due to health. Honestly, it was the STRESS of that job, and the two "supervisors" who were "witches" and that is putting it mildly. The stress each day of dealing with those two, along with the tedious realms of dealing with Real Estate Files, and all of the paperwork in them, the job was very, very stressful without having to deal with two backstabbing, back biting, lying women. They had been "friends" for many years, and had both worked there many years, thus they spent their time covering one another's butts... But that is past, I am back in TX now, in my hometown... and I've let go of the anger and bitterness that I first had right after having to resign. Later, in fact, I've become online friends with one of them. She was my direct supervisor, and since then she had a very bad car accident and bless her heart, dealing with lots of pain from the accident.... and the bank actually closed since I left I found out. Anyway, time has gone by much too quickly. My 1st Grandson was only about 5 weeks old when we arrived back here. He and now his younger brother are both in school. When I think about just how quickly life passes us by, it makes me want to make sure those I love, and I care for dearly, whether family, spouse, and friends... that I let them know. So, if you have a "special someone" then I wish you a very beautiful Valentine's Day together. If you are alone right now, then do something very special for yourself tomorrow!!! You can "love" yourself and show how much you do. Whether that means a special cup of coffee, a walk if it is pretty, buying that "something" that you've wanted and so forth... Enjoy! Don't let life pass you by.... as one of the songs in the country songs lists.... "No Time to Kill" by Clint Black... and then another one is about how quickly your child grows up, becomes a parent themselves, and goes on to have their own family, all within a breath's space... in the blink of a eye... time can pass you by... and as my favorite saying out of a song in fact goes... (the chorus that reads "When They Carve My Stone All They Need to Write on it... Living in A Moment You Would Die For" that is what I want on my Head Stone someday - the chorus of this song....
sung by

Ty Herndon

Living in A Moment

Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for

Tuesday, February 10, 2015

Always Looking for the Sunny Days even though the Cloudiness and Fog hang Around... dealing with symptoms...

Okay, well I've missed out a couple of days dammit with this stomach mess. Not sure what is gong on. But, I do KNOW I am SICK of it! I am a bit better today so far. I've tried to not drink or eat anything I think might be causing it so badly. The vertigo just has to run its course usually then gets better. What I am concerned about, is why this time it is so bad, and why the meds I take for it are not calming it down as usual. I am still doing some research myself and I am sure since I am honestly WAY OVER DUE for A scope to check out my esophagus and stomach, that will probably be where I am headed. I know I have Barrett's Esophagus. I really should have had it scoped again over a year or more ago. But, with everything else, I keep having to postpone it. Now with all of the problems I have, I am concerned if the dysplasia, where my actual stomach lining grows out of the stomach and into the bottom part of the esophagus, and can cause cancer. But, I just dread any other "surgeries" etc> I am so literally sick of doctors, medications, insurance, pharmacies, no one can get their crap together. I've had an ulcer before thus one of the reasons I am on Nexium, plus of course GERD. but even the Meclazine I take for nausea and the motion vertigo. It just seems what ever is going on, still to me is totally separate from the Lupus, Sjogrens and RA. One good piece of news! MY ORENCIA FINALLY CAME IN today! After being off of it for at least three weeks, I feel may have some to do with how I've felt this past couple of weeks. When you begin to research Lupus, Sjogren's, RA, FM, ME CFS. and any and all of the other AI illnesses from MS to Diabetes 1, there can be a million symptoms, all of them similar, and they may or may not have to do with the autoimmune illnesses. Of course the problem I can already tell from that is patients (meaning us) and our doctors, whether PCP, Rheumatologists, or other specialists, tend to get "lackadaisy" and "automatically" no pun intended blame it on Lupus, RA, and so forth. So, each time a new "symptom" arises, all too often I feel it is kind of "'blown off" as to whether there is something "new" causing the new symptoms, or is it indeed the AI's. I realize that is is very difficult, and in some cases probably almost impossible to defer one from the other. Even with many types of tests, lab work, studies, and so on, still there may not be an "answer" other than due to one of the AI. That is scary though. What if, and I am just "saying" what if myself, or anyone with stomach issues and the nausea, vertigo and so forth left it unchecked, and went on either with the doctor knowing or just figuring on our own, it was "just the AI" and more symptoms, and it was something worse? What if it were stomach cancer, or some type of other cancer such as leukemia, or the GERD had really done a number on my esophagus and that dysplasia is much worse than it was. Or what if it is yet another autoimmune illness, or any number of other chronic diseases that can start out with the exact same types of symptoms. So, even though none of us want to jump the gun per se', running off to our doctors each time one little thing pops up or changes, plus we are all in the place that, oh well, they will blame it on the Lupus anyway, yet something else that may need other treatment, surgery etc done. A great for instance was my double hernia's early last year. I was told by three different doctors those "lumps" were nothing to be concerned about, and they more than likely were not hernia's. Then I still feel uneasy, so I go to a surgeon, who sure enough says right off it is not just one hernia, but I had two... one on each side...So, had I listened to those first 2 or 3 medical doctors who just seemed to not want to really find out for sure, they blew me off. Then I do find out I have hernia's just as I had suspected all along. We for the most part, have a "gut" feeling, again no pun intended, about our bodies. For those of us with chronic illnesses, we especially tend to watch out like a hawk for any type of new symptom, or something that seems to be "off" and not quite right. Yet, often times I know for myself, I go into the physician's office, and I just feel like if I am going to get the same old answer, it is the "Lupus", "RA" etc... then why... and if it isn't or they feel it may not be, then here goes the 50 "shades of Testing" that runs up expenses, and takes away our precious time. Even with many new tests, there still may not be any "one" answer, if one at all. I have found that even with the double vision, that started so suddenly out of no where, and has gotten to where I have it all the time, unless I wear my corrective glasses with the prisms in them, I have constant double vision. Some of you may recall the entire ordeal I went through for at least 6 to 9 months or more. I saw 2 or 3 different eye specialists, a couple of different neurologists, my Rheumy, my PCP, and in between I am sure probably someone else. I also went through exam after exam, test after test, loads of blood work and even a "biopsy" on my temporal artery. The specialist felt I had temporal arteritis, and it did make sense. But, the very treatment for it was something I was already taking, just not in as high of a dose as they use on that illness. So, I also found out the biopsy comes back all too often "inconclusive" thus I may have had it, but they didn't really get the exact YES, but it was not "negative" either. It took months and months, a couple of different pair of glasses, and just all kinds of neurological testing. One of the Neurologists said he felt I had Myasthenia Gravis which is another autoimmune disorder, and that will cause the symptoms I had and also explain where and why they were showing up at that time. Yet, still there is no one exact science about Myasthenia Gravis either. Just like MS, which I could have also, still there is one test that they can do, and again it is not always "exact"... It might be negative, and I still have MS, or I may show up positive, and be negative in reality. So, as we hold hands, together one next to the other, remember for one, you are never alone... there is someone out here, that can empathize with you, and totally understands because they are also experiencing some of the same things, whether it be illnesses, or any other number of other explanations. You can bet money on that there are one or usually many more of us with the same situation. Gosh, I can count on my hands, toes, 50 times over at the number of people who have been down almost the same road as I and the rest of us have. I've managed to feel "well enough" today to get some cleaning done, baked a lemon pound cake, did some other cleaning here there and yonder, vacuumed, and even colored my hair (of which I am not thrilled, it is way much darker than the last time I did it with the red).... but I also know it will fade out pretty quickly, and then won't be so very deep red... the color I used before came from Avon, and they quit making the product line! Plus I didn't keep the number or part of the box so I could try and match it up and I picked what I thought would be close, but it is still much deeper reddish/almost maroon than I expected.... so I hope maybe, my stomach is settling down, along with the stupid headache. I need to run errands and get to the market tomorrow, so I need all of the "wellness" I can get hold of for tomorrow. It will be one of those busy days. Anytime I head to the market and have a "list"... a long list, and then coupons, that means a longer trip that runs into hours if I have lots to stock up on and to use coupons on....

Monday, February 9, 2015

Lupus, RA, Sjogren's and Vertigo, Nausea, Odd smell and/or Taste

I've been "under the weather" for some reason the past several days. I've had a bad bout with my "Vertigo" and this one seems to be worse than some others. I've been so nauseated, I can barely get off the sofa. Everything smells "odd" to me, and even things I usually enjoy eating, now just taste off... sometimes so bad I almost am sick just smelling it cooking. I've also had a headache off and on with it, and my head just swims even to the place this time my "body" in itself does the movement ordeal again. I've researched just about everything I can, and in any way I can to try and find out some way to pin point whether this is a "stomach virus" or is it due to the RA and Lupus. along with that fact is also I've been going on three weeks without my Orencia. So, I wonder if that lapse since the pharmacy and the insurance could not get their stuff together. Hopefully tomorrow it is supposed to come in... yet as I said, I'll believe it, when it is here and I see it! It has been one red tape mess, after another trying to get all of them to get their heads out of their butts, and get things rolling. Even after they got EVERYTHING that they needed, I STILL had to CALL THEM MYSELF this morning to ensure they DO mail it out!!! It has just been a nightmare, and what is worse is I feel maybe the Orencia has not been doing such a great job.

I also have to question whether this is totally something else, and not actually Lupus/RA related. Since so many things can happen, and especially after having a compromised immune system, I never know what the heck will happen and when it won't. I just hope to find myself much better tomorrow. I've been so bad I haven't really been able to sit much here on my computer and post much. I hate leaving everyone without a fresh post daily or more than one!!! Bear with me, for I hope tomorrow shall be a better day....

Friday, February 6, 2015

"Go Red For Women's Heart Association" Today is the National Wear Red Day!



Tuesday, February 3, 2015

RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...

Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.

It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.

I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.

Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.

Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.

For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.

I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.

There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.

Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.

I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.

We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.

So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?

I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?

Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.

I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.

I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.

You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.

So, today... I dedicate each page of the book I am writing to YOU!!!!