Showing posts with label Raynaud's. Show all posts
Showing posts with label Raynaud's. Show all posts

Monday, November 7, 2016

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.

#HAWMC

Thursday, March 3, 2016

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...

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Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"


Tuesday, March 10, 2015

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....


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...











Saturday, November 29, 2014

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!



 
http://www.sjogrens.org/




I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.