Showing posts with label mixed connective tissue disorder. Show all posts
Showing posts with label mixed connective tissue disorder. Show all posts

Wednesday, January 7, 2015

Anticipating the 2015 Arthritis Foundation Annual "Summit on the Hill"!

A dear friend of mine that I met in fact at last years Annual Summit on the Hill by the Arthritis Foundation had posted and asked me if I had filled out my "Travel Award". Well, yes I have, and as I told her, I had made "Platinum Ambassador" thus I believed it was my "obligation" to come to the Summit. Of course I would try to go whether I had made that or not. My entire world evolved around that Summit last year in March. I had in fact "won" a Travel Award, after putting my application in at the very last moment. I felt I had probably missed out since I was so late in even knowing about being able to go by getting a "Travel Award". So, by the time I filled out my paperwork and emailed it in, I feared I would be too late. But, within a few days, I received a "glowing email" that I had in fact been granted a Travel Award to D.C. for the Summit that took place and does take place each year around the 24th through about the 26th of March. I will never forget how much I got out of the Summit even being my very first time there, and just how much more I wanted to be a "better voice"... activist, advocate, blogger, writer, and then I wanted of course to be an Ambassador for the AF. I was not sure I would be able to get enough advocacy work in to make "Platinum" especially after my husbands accident, but I was SURE I would give it all I could in between everything that took place for those months following that fateful day in March. I've played it over and over in my mind. I have spoken about it numerous times online, and in person. I've written about it, blogged about it, and still to this day, at times it feels almost surreal.
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.

I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....

There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.

Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.

As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.

In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.

So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.

That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.

So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.

Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.

So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.

The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.

Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.

As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.

Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!

Working on a back ground graphic for the top of my Facebook page. I want to include the URL back to here. Often people may not bookmark a page, or like even though I post a "link" back to my blog in the posts, it may get moved down several slots, and then people may not be aware of how to get back to my blog...











Tuesday, October 14, 2014

Sharing the Excitement of the Coming Months! (Trying to Ignore the PAIN of these Illnesses - RA, Lupus, Sjogren's, MS, Myasthenia Gravis, Perniscious Anemia and the list grows)

I have been trying my best to "brave" the chill in the air, knowing that means several things. Shorter days, cooler weather, Fall colors and Autumn leaves coming down. Holidays here before we know it, cooking, baking, and the smell of Thanksgiving, pumpkin pies, rolls, wonderful home made quick breads, and spices like cinnamon, cloves, nutmeg, and those "pungent" aromatic hints that Winter is here, Christmas, and before we know it,  2014 will be a memory, and 2015 shall be in full swing.

My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.

I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.

Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.

It is also getting close to that time we make our "New Years Resolutions"  or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...

At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)

So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.

Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.

Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.

I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.

From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived.  I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.

So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.

I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days  the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.

Cherish those moments.... never let anyone or anything keep you from "your own dance".....

:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...

                                                                                                                                                                                                                                     










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”. 

Thursday, November 14, 2013

The Latest In Clinical Trials


"A Way To Provide Help and Hope for you and for others with AAI illnesses and other AI diseases also "



I received a new "Clinical Trial" email yesterday with the current list of Clinical trials you can search through to find that some may be a fit for your illnesses, along with where those are located, what they involve, and to see if you may qualify for one.

These can lead to helping not only the patients who get involved but sometimes leads to helping many others because someone stepped up to the "plate" and decided to do one of these.

You can either "join" for free, or just do a "search" with key words, and then the closeness to your location in miles or zip code.

Here is the URL:

http://www.clinicalconnection.com/SearchStudies.aspx


I recently spoke with a gentleman that happened to have Lupus. We met at a meeting, and when I was telling someone about my own experiences with "prednisone" he asked "Do you have Lupus?" Of course I said yes, along with several other autoimmune arthritic illnesses. We got to speak that evening for a long while and it is amazing the people that seem to be put right into your life just when you least expect it. He had been originally from the Houston TX area. He had participated in a clinical trial and talked with me about it.

He said he had a good experience with the one he participated in. I had wished that someone could have pointed me in the direction of these trials when I was first diagnosed, or barely diagnosed with one of several AI illnesses I have, so I may have been able to STOP or slow down some of the damage that is now too late as far as medication wise now. So, my own experience led me to surgery on several joints, and replacements on three large joints, and a 4 level cervical fusion, discectomy & two artificial discs replaced two of the severely damaged ones.

My own Rheumatologist in fact does research, and also teaches, plus still sees some of his patients. He had talked about a project "one of the clinical trials" that were putting together, and then I found out the place he teaches and does research at in Dallas, is also very well known for all of their clinical trials.

As for myself, before I had found a "great" Rheumatologist (who I thought I might lose in fact to his research and teaching), fortunately I didn't, by the time I really got to know about all of these "trials" I was in a good spot with medications, doctors, tests, labs and so on.

So, rather than let other people get under the radar and not be able to possibly enroll in a clinical trial, I try to make sure and put the URL up when they send me a current list via email. There are absolutely so MANY of them going on, and if you are fairly near a big city, I almost guarantee you can find something that may be of help to you.

Of course there are "trials" on ALL types of illnesses, but when you search for RA, Lupus, Sjogren's, MCTD. UCTD, JA, Still's Disease, Ankylosing Spondylitis, Psoriatic Arthritis, you certainly will find an entire host of trials for those illnesses.

Of course there are so many other Autoimmune Illnesses such as Multiple Sclerosis, and that list is into the hundred's that I am sure there are plenty of trials to go around for many.

It can be a way as I said of helping your own situation, possibly others also, and make way for hopefully a quicker and accurate diagnosis, more medications, possibly more ways to put these illnesses into remission, stop them before they begin, or possibly CURE those that are now suffering from them.


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?!"

Speaking of Prednisone - Autoimmune Arthritis… A "Necessary Evil"

Here is the site - "Creaky Joints"  and a Topic we all talk about quite often -- Corticosterioids!

Just about anyone  with any of these Autoimmune Arthritic Illnesses - Lupus, Rheumatoid Arthritis, Sjogrens, MCTD, UCTD just to name a few… has had the "pleasure" AND the "Pain" of these types of "steroids"… they are incredible & horrid also… read on….

http://www.creakyjoints.org/content/cj-hot-topic-prednisone

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