Showing posts with label flare. Show all posts
Showing posts with label flare. Show all posts

Thursday, December 18, 2014

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              



Tuesday, October 28, 2014

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

Saturday, August 16, 2014

New Post - My Letter to Congress in Regard to Arthritis, Autoimmune Illnesses, Medicare, Advantage Plans, Medicaid & Just How We Lack All We need to have a "Quality of Life"

I just completed this email below. I've been working on it for what seems like weeks. Due to ALL of the doctors visits, Jim going to Rehab twice weekly, my visits with my dentist to get my dentures (which I am already having "flare" issues I think with the Lupus, Sjogren's and RA) & numerous other things that have had to be taken care of, I've had to write this in between all of that. Finally, this morning around 1:30am I woke up needing a drink of water. Not realizing my foot was so "asleep" I got up and immediately went to the floor, with a very "twisted" left ankle, that left me in tears. I tried to go back to bed, but there was no use. So, at 4 am I got up, and decided to finish the email, and try and get some things done on the computer and on line that have had to be put on the back burner due to all else going on.

I am sharing the email with you. I am also sending it to my own House Representative, and to several others in the Federal Government that I feel can and may try to do something to help not just myself but ALL of us. Here is the email. My hopes are that YOU will write your own and also email it. The Arthritis Foundation sent out a newsletter about 10 days ago asking for us to all send in our stories to the email address that will be listed below this one I sent....

Good Afternoon to All In Congressional Representatives,

First of All, I want to thank, House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) recently who announced a bi-partisan initiative, called the “21st Century Cures: A Call to Action”. This will certainly help to shed some new light on chronic illnesses, and especially those new diseases and illnesses, that at this time, like many types of Arthritis, (Rheumatoid, Osteoarthritis & Juvenile to name a few), that have NO cure at the time, little known about “why” those who all of a sudden get the diseases, why others may not, what medications we need in the future to either put these illnesses into remission, OR CURE them…. even STOP them before they ever do the severe damage they do to all of us suffering daily dealing with ALL of this issues these horrid illnesses bring into our lives. I hope many of our other Congressional members will stand beside HECC Chairman Mr. Fred Upton and Representative Diana DeGette and help to make this “Call to Action” a huge success for the thousands and hundreds of thousands suffering from various forms of Arthritis and Autoimmune Illnesses.

I am an “Arthritis Patient", that suffers from several various forms of autoimmune arthritis, as well as osteoarthritis. My list of diseases, illnesses and syndromes; Lupus, Rheumatoid Arthritis (RA), Sjögren’s, Pernicious Anemia, along with many issues brought on by thee illnesses, such as a heart attack at 40, severe pain, swelling stiffness that all have consumed my quality of life at times so much, that I feel the diseases rule my daily living. At the age of 15 I had my 1st knee surgery. At that time, they knew little about Juvenile Arthritis (JA), and the experts really did not know much about RA, and all of the other arthritic and autoimmune illnesses here in our nation. So, I went for years from one physician to another, trying to find out why all of my joints were “falling apart”… by the time I was 40, I had already had a left elbow repaired, a left shoulder repaired both knees had surgery at least twice back them, plus all of the other “symptoms” that most doctors at the time “blew off” especially when it came to women. They for the most part thought if I woman complained about aches and pains, she was either nuts, a hypochondriac, was having “female” issues, or was depressed. That was the huge one. The answer from most doctors to a woman with “mysterious” health issues was to determine they are depressed and fill you full of anti-depressants that did nothing for the “physical issues” that overwhelmed you. Still I would hear, even with the severe migraine headaches I had, the weakness, & still other signs and symptoms that should have never been looked over, but taken seriously.

In 2009 I FINALLY began to get some “answers” that made sense. I was not nuts, depressed, making it up, had female issues etc…. I had an “autoimmune issues or issues” that were ruining not only my joints, but also causing he severe fatigue, all of the joints and surgeries I was having… including both knees completely replaced and my right shoulder had to be replaced, along with a 4 level cervical surgery, for degenerated disc disease, and now my thumbs, fingers, toes, and ankles are “eaten up” by RA.

I’ve jumped through hoops and hoops for a very long while over my medications for these diseases. When you have a serious illness, and medications come out that may “halt” or at least give you a huge percentage of reprieve, so your quality of life comes back & your doctor feels the medication is necessary, there should be NO ONE at an insurance company, or throughout Medicare to tell your doctor differently. These ridiculous amounts of forms, paperwork, having to be put through 4 or more medications that DO NOT work before the ONE that does can even be considered, makes for a patient becoming worse by the day, paperwork and red tape costing precious doctors time, insurance people who have no clue what the entire thing is all about, and it is a vicious cycle of “stuff” in order to finally either get the medication you NEED OR be turned down, which really is asinine. I have been through I cannot tell you how many “pre-authorizations”, sending medical records, my doctor having to fill out forms which they should not have to, talking for literally hours on the phone trying to get to ONE PERSON who can “fix” the problem… and on the computer sending emails, sending messages, and as I said, all the while suffering from these horrid diseases that each day wreck my joints and my body a bit more each day. Any type of “autoimmune arthritis” such as RA, effects NOT JUST the joints. They are “ systemic” in nature & can effect the heart, lungs, kidneys, your hearing, your eyesight, your memory, your blood, your stomach, intestines, and so on. Just about every part of the body can be effected by any type of autoimmune illness, and can reek havoc in just a short time without proper care.

One of my horrors with one of these “Autoimmune Arthritic” diseases is Sjögrens. This is just one that they do not know nearly enough about. The doctors know it effects the mucous  membranes, which we have all over our bodies. Our mouth, which is how saliva is formed. It keeps our eyes moist, our intestines, and many “linings” in our organs have these types of member in them. Without them, organs like the inside of the mouth, dries out so badly, you cannot even speak, swallow, and the worse cause horrendous “dental caries” and other issues! Yet, I was not informed of just how quickly and how badly my teeth might be effected. I brushed daily, tried my best to chew sugarless gum, sipped on green tea all day long, and used the special toothpastes and all of the “remedies” for dry mouth. Yet, about a year ago, all of a sudden one evening we were eating dinner, and an entire back of a molar just fell off in my mouth! Within the course of 3 weeks I had 3 more teeth with break off at the gum line, or a half of a tooth break off. Then suddenly almost every tooth had either a large cavity in it, OR would crumble off on the edges, and I knew I had to get assistance quickly because I was losing all of my teeth, and in a time frame that was not going to allow me to wait even a month or two.

So, I began trying to find an “Oral Surgeon” and/or an Oral Surgeon/Maxillary surgeon that would take my Medicare Advantage Plan “Humana Insurance”. Well, I have yet to find ONE dentist, oral surgeon, and so forth that will take my insurance, EVEN THOUGH this problem is caused from a physical ILLNESS, NOT just regular dental caries. This is a serious matter, that I spent weeks and weeks calling dental offices, and researching online, first of all, WHAT I truly needed done, and a Dental Doctor that could do the procedure, and try to help me get some of it paid for by my Medicare Advantage Plan. I literally spent days and days sending emails, making phone calls, sending messages to dentists offices, all to no avail. In other words, (unless you have had to price these types of dentures called “mini implants”) I was going to have to cough up anywhere from $8,000.00 to some the charge $16,000.00! Now these are the dentists that have been through enough “training” to do certain types of “oral surgeries”, not the Physician Dentists, the true Oral and Maxillary Surgeons MD. I am sure when you look at the fact they usually put you under complete anesthetic in an operating room, and have several nurses and so on assisting them, they charge I would say $25,000.00 and UP! By the time you pay his services, a anesthesia doctor, all of the charges for an “outpatient” stay at a day surgery or hospital setting, I know from the extensive surgeries I’ve had due to all of these horrid, life altering chronic illnesses, it certainly would be a great deal more than $8,000.00. And “they” MAY be able to get my Medicare Advantage Plan to “pay”… with some pushing, pulling, red tape, & lots of time before I could have anything done, BUT the insurance ONLY PAYS 60% of any type of “dental” procedure no matter if the problem has been caused by an Illness! So, that means by the time you added up all of those “extra’s” involved where I would have to travel back and forth from Dallas many times to get it all done (so far I have had about 5 appointments to do all of this, and still have another at least 3 to go)… thus you are looking at the cost of gas, parking, and what if something happened after hours or a weekend? Like a dry socket, of which I had one, and also the start of an infection. But, I am within 5 minutes of my dentist/oral surgeon, thus I can be in there and getting care within an hour or two. And I am sure if something happened over the weekend that called for attention, he would go to the office and see me. Now, as it is, after an almost “deadly” car accident that my husband (who more or less has been my “caretaker” now for almost 10 years) last March. An 18-wheel tractor trailer “ran over” him from the back. Aa of now he is barely able to walk, much less drive anywhere. So, I have only myself to depend upon. My 2 children live 8 or more hours away, and my Mom, who I am “watching after” and helping out at times, can barely drive to the grocery store and back home that is about 10 blocks or less, thus there is NO way I could have been going to Dallas, being “put under” and driving myself home.

This part of my story only touches the “iceberg” of what I’ve had to endure. Lupus, RA, Sjögren’s, Raynaud’s, Osteoarthritis, Migraines, two heart attacks, one at the age of 40 (now they think the Lupus may have caused them, but that was years ago before I was diagnosed), plus all of the complications that go along with these illnesses. They can “attack” just about any part of the body, from the brain, to kidneys, to your heart and lungs, blood vessels, skin, and that list just goes on and on. As I have come to find out also, once they “finally diagnose” you, more than likely you have “several AI’s, causing the problems. (AI- Autoimmune diseases). We NEED HELP! WE NEED more RESEARCH, TRAINED PHYSICIANS ON THESE ILLNESSES, including DENTISTS, MORE MEDICATIONS, TO BE DIAGNOSED EARLY BEFORE all of your body is falling apart from them. We need to find out what causes these chronic illnesses, whether heredity, or caused by something later in life. The number of people (WOMEN rank MUCH HIGHER in getting any of these than men), grows each day. Some of us, like myself, may have been ill for many years, 10 years, or more BEFORE they finally get a doctor who takes the time to sit down, and put together the pieces of the puzzle of someone with one or more of these illnesses. But, doctors are overwhelmed, underpaid, and just do not have the time, even as specialists, like Rheumatologists, to really EXAMINE a patient, and there past medical issues to find out their patient is ill with a disease that could have been there for a decade or more, By the time mine were found out, I had already had both knees replaced (after several arthroscopic surgeries), an elbow surgery, arthroscopic surgery on both shoulders, my right one now replaced completely. I have osteoporosis, and mine is “severe” in range. I have the bones of someone 80 plus years old.

This past 6 weeks have been especially an extremely fought time for me. Due to the Sjogren’s literally eating away from the inside out, and no one knowing it until it was too late, I have had to endure having two sets of 5 at a time teeth pulled, much of it difficult due to the teeth being so brittle, thus difficult to excise, then after going through a couple of times trying to make sure the complete regular dentures will fit right for now, I went through a couple of visits for that. I finally got my “new teeth” just this past week on August 12th, 2014. Yet, I still had 11 teeth that had to be pulled all at once, then my gums were sutured shut, after my dentist had to do some “filing” to my bone so the dentures will fit properly, and then my gums were sutured closed in the front, top and bottom. I did then immediately get my dentures put is, but of course with extremely swollen gums, suturing and a great deal of bruising due to all of the local anesthetic being put in the syringes, then the extracting in itself, my gums developed some very sore spots, and even several mouth ulcers. Those I get with Sjogren’s to my dismay. I HAVE to be able to wear these teeth, since I have none of my own now. And I cannot have them “modified” to be held in with the “mini implants” until the bone is completely healed from where all of the teeth were extracted first. This process could take 90 to maybe even 120 days. My problem is trying to have my own mouth accept them, due to the issues of ulcers, and other problems I develop in my mouth due to the Sjogren’s. Then even at that there is already over $4,000.00 paid all of my pocket to get this far with the dentures. Then in another 90-120 days, there will be another $1200.00 (what was “left off accidentally the original treatment plan to pull all of the 11 teeth left) that we were not expecting, then another over $3,000.00 just to have those four “mini-implant posts” put into place in my gums, then the dentures modified to fit properly on those posts. If I could wear the dentures as they are now, I may not have to incur the last $3,000.00 plus BUT I can already see since I am suffering from ulcers, (probably a bad flare of the Lupus, Sjogren’s, and RA) from all of the trauma to getting this far with the dentures, and all of the other very stressful things going on in my life at the present, it has brought a bad flaring up of the autoimmune illness. When this happens, I can have everything from those types of very painful mouth issues, severe Lupus Headaches, severe fatigue, swelling of my joints, the “mylar rash” on my face, & numerous other symptoms that are from these illnesses. It is shameful the amount of time, the loss of quality of life I have sufferer and continue to suffer, the lack of enough research, medication, doctors, and other medical items that may help to put these illnesses in permanent remission, or not get them at all, then I have to fight “tooth and nail” (no pun intended) to get my Medicare Advantage Plan to pay a dime, especially when it comes to anything to do with the huge burden of expense of all that I have endured with my mouth, and the Sjogren’s that causes it. I want to see this change, for myself, and also for many others, some I have met recently that are going through the same situation that I am. Most of them like myself, really taking on a very heavy financial burden because they cannot get Medicare or a Medicare Advantage Plan to cover any of this even though it is a “medical” problem, not dental per se. For some $9,880.00 plus (because I already had several teeth that rotted down to the gum and had to be pulled before the procedure of getting my mouth ready for the dentures) may not think that is a great sum some of money. BUT, someone living on Social Security Disability, and the spouse (my husband) that had been my “caretaker” for the most part, then he was in a severe, almost life taking vehicle accident on March 26th, 2014 and spent almost 4 months in the hospital, with many complicated injuries including his spinal cord. Thus now he had massive health needs, puts even more of a burden on my life and on his that I an barely begin to tell about. He was hit from behind by an 18 wheel tractor trailer that day, and rushed to Baylor Emergency in Dallas, where he was operated on for basically a “broken back”, 7 broken ribs, and the list of injuries goes on and on. So, us trying to take care of one another is a daily struggle. Again we begin all over to try and find proper physicians for him through the system, and much like I have come to find out, many doctors are refusing to take any Medicaid patient, and now even worse, are refusing to take Medicare patients, due to not getting paid properly, and in a reasonable time length.

I would like to see for one Medicare or these Medicare Advantage plans cover MORE on something such as Sjogren’s, that is not “dental” in nature, but caused by a physical illness. I would also ask that rather than put up a road block, where the patient cannot get through to anyone at Medicare to explain the problems, or be able to get our doctors and dentists to be able to help get these types of things paid for just as any other type of chronic illness. I cannot express enough the huge amount of emotional, physical, mental, and financial anguish I have been through, and still have more to go just to be able to eat. But, my teeth are what can sustain my life, and without them, I am at risk for all types of other physical and emotional issues.

I realize we have many people in our nation, and around the globe in need of all types of medical attention. Yet, in a great nation such as the United States, our people should not have to bear such a hardship, and not have anywhere to turn to get any type of financial assistance with something so critical as your teeth. I did NOT cause this, the disease did.

I ask you to see if there is a way to change this system, give help to get things like this paid for or at least a good portion paid for by Medicare and/or a Medicare Advantage Plan. I ask you to get the funds out there to get more specialists, so we have enough doctors to are qualified and trained, that have went through a major study of these life altering illnesses, and can give us back our quality of life, and find these illnesses and have the ability to treat them before 5, 10, of more years go by and the damage has already been done.

I feel I do my part by voting, by participating as a volunteer, activist, and Ambassador for several organizations that are trying to change the face of Arthritis, Autoimmune Diseases, and all of the other medical problems that come with them, I sign petitions, I send letters, make calls, and send emails. I am somewhat limited to do what I can medically and monetarily, but in the ways I can try to stand up and make a difference, I give it my all. Now, I ask you do to the same. Stand up for all of us that want our quality of life back, to be able to do the simple things in life like eat, do a hobby, work in a garden, or whatever you may want to do, by giving the way with funds, research and voting for bills that will reduce the terrible burden off of those like myself.

Thank you for your time and for listening. I hope my “one” voice can help to make a difference.

Friday, December 13, 2013

Autoimmune Arthritic Illnesses - Finding it not "Easy" ... To Be... Me.

An Autoimmune Space - Is it every Easy - to Be - "Your" own Me?



I heard this song last night on a movie we were watching... Oddly enough I found that David Grey's songs really hit home with me, when I was brand new in a huge city. I had never lived anywhere but a small town, & huge cities were something I "visited" to go shopping, to doctors and so forth. I got "introduced" to this man's music just after moving there, when my entire world had been completely transformed. I had gotten on a bus and road for almost 3 straight days and nights, to a job that I had never done, in the middle of Seattle that I knew nothing about, would have to "learn" how to go back and forth from Seattle to the islands around such as Bainbridge, drive in a city that had almost "mountains" in places in the main streets & to where every single thing in my whole life was going to be in the "background". I shall be "reborn" in a manner, you could call it. I was doing a job I never had done before, which was being an assistant manager at one of the apartment buildings in the "creative & quirky" part of Seattle known as Capitol Hill. Even the way of speaking was different there. Words we frequently used in Texas were not said much in Seattle. For instance, the "grocery store" as we called it most of the time in Texas, was the "market" in Seattle. Dinner was used, not "supper".  I slowly "self-learned" to try and "lose" my "Texas dialect" and try to sounds more like a I was "home grown" in Seattle. Of course you can take the girl out of TX, BUT you can never take the Texas Accent out of the girl! Just about everywhere I went the first question was after I said "Hello" was where are you from? I got asked if I were from "GA, MS, NC & several others that people tend to associate with a "southern accent". Yet, even though Texas is considered southern, they have their own unique accent. In fact we sound like a bunch of hicks from the hills. I couldn't completely take away the inflection from my born and bred accent, but what I could do is sound "less" like a southern dummy, and more educated. By the way, the FIRST thing just about every person, man or woman, said to me after I opened my mouth and they heard me speak was "Oh, that is so charming"! Man I almost hated to hear someone say that after while. I did NOT want to sound "charming". To me that just indicated I still sounded like some South Southern woman, who was about as dumb as a brick, drinking iced tea with a sprig of mint in it, wearing some frilly, flowery dress & ordering her many "staff" around all day long. Thus charming did not set well with me... LOL...
Of course being in Seattle for 5 years did "rub off" on me. I began to use "their" colloquialisms. In fact, I brought some of those back withe me to Texas. I never "wash clothes", I do laundry. I never to go the grocery store, I go to the market, the ending meal of the day is not Supper, it is Dinner. By the way I did learn another tidbit of information on "West" coast speaking from a dear friend in Lancaster CA.  One day I was talking about their local sheriff's department staff and I called them the "county boys". She about fell over laughing as she asked me to say that again. Never had she heard the term for the County Sheriff's Officers, called the County Boys. Another one she had not heard, and I noticed it in Seattle also. A "toliet" on this side of the USA is known as a toliet. In Texas it is also a commode. Along with several other "slang" terms. The "pot" is one my Mom says all the time. I think I've rubbed off on her a bit though. I notice now she may say restroom, rather than the pot etc. And when you went to “do laundry” on the western part of the country, in the south you were “washing clothes”. Now the funny thing about that one is due to my Texas accent, it sounds more like “warshing clothes, rather than washing. So of course that just made her laugh more. In fact, I have so many little “sayings” “comparisons”, things my Dad would say, and you hear from on television now or in a place that is quite southern in nature, or Texan, you will hear a few of the sayings my Dad said so often they just rubbed off on me. For instance if you are chronically late for an appointment, Dad would say “He would be late for his own funeral”. Let’s say some one happened to be a bit uneducated, or just say something “off” that may sound a bit stupid, he might say “He couldn’t pour “pee”, with instructions on the heel, or if someone may be a bit frugal with their money, then you might hear, “He is so tight he has to screw his britches on in the morning”. LOL!!!! Believe me, I could write an entire book, on just the sayings I heard all my life, and many of them come straight out of my mouth quite frequently. My husband told me I had so many of these “sayings” that came from my years of growing up with my Dad, and here in Texas, that I should write an entire book on them. I probably do have plenty for a short book honestly. When I sit here and begin to think about them, I can recall hundred’s if I made my mind up to get them all written down. 
The point of all of these things that I am talking about is to find out, even though all of us speak “English” and I guess technically, “American English”. Yet, if you traveled through most of the 50 states, you would find there are all types of sayings, dialects, or colloquialisms in just about every state. I also found out that in some states, they really do not have a quirking type of accent, such as someone from the Southern states, and so forth. They barely have an accent at all. Seattle was that way. There really was not any “accent” or particular dialect. That was what made them different, rather than having a great deal of inflection in their speech.

Onto, the beginning of all of this. Being an absolute music lover, of almost all types of music except Opera, I listened to music almost 24/7/365 when I could. I had probably heard a “David Gray” song in TX a time or two, but I never knew who he was. So, some of the people in the Seattle area really loved his music. Thus, I was introduced to his particular style and sound, of lyrics and music & I just loved it. His lyrics “spoke” to me, especially about how I had came through such a horrendous journey, allowing lots of water to flow under my own bridges, as I burned some, mended others, and built some new and stronger ones.  Another one of my favorite songs, and it is the chorus that I truly love is

(There’s so much time to make up, everywhere you turn, time we have wasted on the way, so much water moving underneath the bridge, let the waters come and carry you away.) Crosby, Stills, and Nash….

Then I hear these lyrics by David Grey, along with many of his songs, and lyrics. When I heard this one in particular, it summed up for me, all that at that time in space for me, I felt the same as the song says, “It’s not easy to be…. me”.

(Lyrics by David Gray - It’s not Easy To Be Me.

"I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me 

I’m more than a bird…I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

I wish that I could cry
Fall upon my knees
Find a way to lie
'bout a home I’ll never see 

It may sound absurd…but don’t be naive
Even Heroes have the right to bleed
I may be disturbed…but won’t you concede
Even Heroes have the right to dream
It’s not easy to be me 

Up, up and away…away from me
Well it’s all right…You can all sleep sound tonight
I’m not crazy…or anything… 

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees 

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me 
inside of me ...... inside of me ...(x2)

I’m only a man in a funny red sheet
I’m only a man looking for a dream


I’m only a man in a funny red sheet

It’s not easy ... wu.. hoo.. hoo..

___________________________________________________

I don’t mean this in a haughty, self-righteous way. I meant it in a way, that everyone expected me to be this “Super Human”, with the answers to it all. It seemed I was expected to be “perfect”, yet I was just a woman, and women have to bleed, and I was truly looking for a dream. Part of that dream coming true was found by me in Seattle. 

Every once in a while my Mom and I are talking, and some subject comes up about me and living in Seattle for so long. Honestly, if circumstances wee different, I am almost positive I would still be in Seattle. Where you did not need screens on your windows, no bugs and flies were. For the most part your windows could be open much of the year. Many places had no air conditioning, because you didn’t need it. The seasons there are so mild, Summer is rarely very hot, the Winters are somewhat cold, and you do need heat, much of which was baseboard heating, that I had never seen. Or many of the older apartments in down town still had the old fashioned, boiler type heaters. The ones that are usually sitting in rooms, all iron and they go in loops. A boiler keeps the water hot, and it flows through pipes up to these iron steam type heaters. I had never experienced anywhere that did not require screen on windows or A/C units. 

Mom sometimes brings up really silly questions that I’ve answered 20 plus times about my being there for those years. I healed in Seattle. I did NOT WANT to “come home” to Texas. When that bus hit the road from Ennis, and I got to the Dallas bus hub, and hopped on the one that would take me to Washington State, I never looked back. The healing of my heart, emotions, mind, and my body at that time began. I felt alive, and as if the weight of the world was lifted off my shoulders. As those years began to slowly heal me there, the last thing I wanted to do, is come back to the very place, that caused me so much grief. Sometimes it is difficult for other people, especially those closest to you to understand ideas about loved ones because they are too close to the situation. There is no way to look at something “objectively” if you have your own heart and spirit. 

The “waters” that carried me under those bridges, came full circle and brought me back to where I began the journey. Yet, this time I was much different than when I left. I had put my own self back together again. I did it by myself. I didn’t have anyone to “tell” me or express to me what “they” that I should do. I did exactly as I wanted to do. So, when I entered my “home town” after 5 plus years, I was very different. In a good way. I’m not sure my two kids and Mom, may not have seen it, but I knew it. That was what counted. One thing that I didn’t realize was that I had not fully grieved the loss of my Dad, earlier that year. I thought I had. I felt angry, bitter, mad, sad, and so many more emotions that I was not expecting to be here to slap me in right in the face and hit me in the gut so hard. 

After once again delivering a small novelette to my readers, I am sure some of you maybe wondering “does this have one thing to do with Autoimmune Arthritic Illnesses”?


To answer that question is “YES! Absolutely!” Although I had shown many “symptoms” of Autoimmune Arthritic Illnesses, for many years of my life, even when I came back to Texas, 2005, I had not been given a diagnosis of any type of autoimmune illness. I had heart Degenerative Disc and Joint Disease. I had heard that my joints were just “Falling apart”. I had 2 Arthroscopic knee surgeries in 2007, one on my right shoulder, my left wrist repaired, and was in chronically severe pain every day of my life. I was exhausted all the time, my brain seemed not to function, I began to “feel” sick frequently. Then came the “pain pump” surgery to put in internally. There has only been 1 doctor back in Seattle to mention he felt I needed to see a Rheumatologist. He was sitting that appointment up, but we moved from WA state a few weeks before the appointment. So, I am not quite sure what brought the entire symptom/subject around to my PCP and I. I believe it was just a mixture of symptoms, and possibly my own research over these same symptoms, pain, fatigue, my joints being so fragile, my fingers slightly bent, and so forth. So, between his thoughts on it, and my thoughts on what I had read, he ordered about 28 tubes of blood to send off to do the ANA and every other possible test for any type of autoimmune disease. It took them a couple of hours to even get all of that blood out of me. My veins roll, and are thin. So believe me when I say it took several sticks, and several lab techs to get enough blood in those many, many tubes. 

A week or more later, I got a call from his nurse saying he had the labs back and he wanted to discuss the results. Of course I knew something mush have shown up, or he would have just had her tell me all of the labs were normal. I “hoped” as horrible is this sounds, they all of those lab tests showed SOMETHING WRONG with me! Sure enough my ANA levels, inflammation blood labs were off, along with several issues the lead to him thinking first of all I had Lupus, along with Osteoarthritis. He immediately sent me to a Rheumatologist who was very intelligent. He was elderly, and probably needed to retire, but he still knew what was important as far as labs, and as he examined me, along with asking all the questions he needed answers on, he felt it “maybe” Lupus/RA, BUT due to the wide variety of symptoms that he seen, he first diagnosed with Mixed Connective Tissue Disorder. I did not know a great deal about this particular chronic illness honestly. I first thought maybe it was another one of those “trash can” diagnosis, used when doctors can’t put an exact finger on a real diagnosis. He had told me on the very first visit, after doing X-rays of my feet/toes and hand/fingers, that I showed quite a bit of damage in my toes, fingers and especially my thumbs. He also told me I had Raynauds. He mentioned that I suffered from “hyper-flexing” of my joints. We call some people “double jointed” when they seem to be so limber, but this meant my joints tended to bend backward rather than just straighten out when I was walking and so forth. In other words rather than my knees “stopping” in their proper position when I took a step, it was like my knee would continue to push out further, thus many of my joints did the same. It was also another symptom, of all of the autoimmune disorders that were to come. I went to him for about nine months. He did a great job with extensive blood work, and examining me with each visit. He also had the greatest bed side manner, plus he had to be pushing 75 or 80 possibly years old. Yet he would remember each and every detail about the patient and if a spouse came, the spouse also. He called Jim by his name every visit. He would ask him questions, and have Jim involved in the entire visit. He also rarely looked at my chart. When he came into that examination room, he had everything in mind. He has to have the the best memory I’ve ever seen. Once all of the blood work, X-rays and so on were complete, and he still decided he was not quite sure about the Lupus/RA yet, he put me on Plaquenil. The only ONE thing that both my husband and I really was disappointed with him was, that he did NOT believe in “aggressive” therapy. In fact he even showed on paperwork to still be doing “gold injections”. Which as far as I know have been not done in many years. He also was truly not versed on the newer medications, such as the biologics, that were really coming out strongly about that time. 

So, I began the hunt for a new Rheumatologist. That turned out to be a nightmare! Little did I know many of the “Rheumys” out there, specialize, in one way or the other. I met one that believed ONLY in labs. She was not going to budge on any medications, and she did not care how badly the pain was, stiffness was, and honestly almost took me off of what medications I was already on. At that time I was still on the Plaquenil, plus my regular MD had put me on Methotrexate by then. I went to about 3 visits, and ran. I went to another one that sounded promising. He was more of a “research” and clinical trial for Lupus Rheumy. I ran into one that supposedly was one of the top Rheumatologists in Dallas. It was this huge, fancy, entire group of doctors who had 3 floors in a office building in Dallas. It did not take me but around 20 seconds and I ran. He did not agree with anything any of the other physicians had said. He frankly told me he thought I was just another one of those with “Fibromyalgia”, and that UNLESS my blood work was extremely abnormal, I really was mostly wasting his time and mine. I guess he was a nonbeliever in sero-negative  Rheumatoid Arthritis. Besides, he was just another “click” up the ladder to the researchers, clinical trials bunch (don’t get me wrong I am all for clinical trials) but there was just something about him and another one I saw that gave me the creeps. I’ve never looked it up, but I know in some form or fashion, these physicians that do participate in clinical trials must get compensated for it. After I seen and heard what I did, I figure they must get a pretty heavy load of compensation in one way or the other for participating in them. 

FINALLY due to a dear friend, who in fact I met on Facebook, led me to the very BEST, venturing to say Rheumatologist in TX for sure. I bet he would rank very high up on the scales in the entire nation! He is an “aggressive” thinker. He also LIKES the fact patients educate themselves, research their symptoms, medications and illnesses. He appreciates those who help him, by helping themselves. In several occasions, I’ve went in to see him with a note about a different medication, or if we can try this, that or the other. And unless he has some really specific reason for NOT using it on me, which it fully explains his reasoning, “we (him and I) have followed some of the things I suggested. As I always say, I am NOT an expert, not a doctor, etc…. but when it comes to MY OWN BODY, I am ranking very high on the expert level of what I feel will help or not help me. Most of us are “experts” when it comes to our own bodies, illnesses, medications, and so on.

Now, to the final “summary” of why all of this long, drawn out detailed story comes about, after me hearing a song that is so “special” to me is, I found my very first deep understanding of myself, and my own life, that 5 years in Seattle. At times is was not a grand picnic. I was lonely some, there was no one there to help me with anything. In fact my car gave me some issues, just before I was leaving on a vacation, and I had to trust my instincts, along with trust people I had been working with, on a mechanic. So, as incredibly much of strength, determination, self-worth, feeling I was capable of taking care of me and all of those good things that so changed in me was only the first leg of that journey.


Alas, what transpired in Seattle to change me, and make me stronger, wiser, and more determined also helped me to be right here, right now, facing each and every hurdle that comes my (our) way.
Coming back “home”, facing the loss of my Dad, and finally facing my own extremely potentially “serious” and could be down right deadly diseases, 8 plus surgeries within 2 years, and all of the other million things here, I WAS able to first of all, be me. I found “me” in Seattle. And “she” came back with “me”. So, “no I can’t stand and fly, and I’m not that naive, I’m just out to find”, “the better part of me” - Even “super people” truly bleed, I’m more than a plane and more than some pretty face aboard a train… yet It’s Not Easy To Be…Me….


p.s. It’s not easy…. for anyone of us dealing with autoimmune illnesses, which rule our very existence so much… to be YOUR own “me”. 

Friday, November 8, 2013

A Flare, The FLU - I PRAY NEITHER!!!!!

I HOPE I am NOT in a FLARE!!! 

I have had to cancel me going to our High School's last football game with our big rivals over in Waxahachie, our county seat. We had planned to go several weeks ago and I bought tickets yesterday. BUT, it was NOT supposed to RAIN darned it! So, I have felt a bit "off" today for some reason. Just had a headache, my stomach not all that great.. and NOW it appears we will have rain about time for the game. Well if it were something extremely important, then I would "push" aside the warning signs of either a flare or my worst fear the flu. I have not gotten my flu shot yet and I've in the doctors office twice in the past 10 days. They were out of the vaccine this last time I was there, thus I have not went onto Wal-Greens and gotten it. Now I almost feel feverish, cold yet kind of clammy, and my legs and lower back are achey. So, bless his heart I guess he will have to go alone. He has called everyone we can think of, and of course the one time he tries no one is available In fact, one of the guys from his meetings has Lupus. He is in a flare right now actually. My husband called him earlier in the day to see if he was going. We had talked about catching up at the game and all sitting together. I met him Halloween night at the "birthday" meeting, and happened to mention the BAD "P" word! Prednisone… and something else was said and he happened to say he knew that P word well, he has Lupus!!! Wow, it is amazing how to "meet" other "birds of the feather"  Anyway, I DON"T want EITHER!!! And sure as HELL not the flu. Last time I had the flu, I got double pneumonia AND WHOOPING COUGH with it! I was on the sofa for about 8 days and could not barely crawl to the bathroom and back. It is a nightmare…. so at that time I had not been diagnosed with any type of AI diseases, but a PCP there already suspected it and was going to send me to a Rheumatologist there in Seattle. We came to Ennis before I went thus found out probably a great deal "too much" later about the MCTD, Lupus, Sjogren's, Raynauds, and the RA. Anyway, keep me in your minds over the next 2 days. I and my Mom are supposed to be going to a Girls overnight trip out on Sunday/Monday to OK, to Winstar! I am going to be extremely miffed if I am too sick to go! :);) Autoimmune Arthritis Illnesses??? "Ain't they grand?!"

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