"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Lupus Flare, RA Flare, UTI's, Kidney Infections... All of the Severe Pain, Tiredness, Fatigue, Joint stiffness, Swelling and WHY Can't they stuff fIND SOMEWAY TO RID US OF THESE HORRIBLE CHRONIC AUTOIMMUNE ILLNESSES????
Of course I get "good news" over the whole endoscopy/Colo-Guard thing... THEN after suffering for WEEKS HONESTLY with what I knew was a Severe Lupus and RA flare(s).... The pain was so horrible I honestly thought my meds were "placebo's".... of course I knew better, but the stiffness, pain, in my hips, lower back, ankles, thumbs, wrists, shoulder, all were just about to drive me nuts. I had appts. already with my PCPC, last week, then I see my Pain Doctor this coming Monday and was supposed to also see my rheumatologist Monday so I only had to make ONE TRIP to Dallas, - My Heart Doctor and I have an appt at the end of April to discuss the possibility of the pacemaker, which I had been outside during the past couple of weeks, when we had "half decent" weather trying to catch up on killing a back yard FULL OF KNEE TALL WEEDS, from so MUCH rain and more still to come, and trying to do all of the "spring stuff"... but I was in so much pain, so tired, weak, dizzy at times... I just felt it was the Lupus and tried to move through it, until the flares were better. By now, usually I would have went to Urgent Care, got a shot of corticosteroids, the huge 14 dose of prednisone, to get over the flares, but as I said I already felt so lousy, wanted to get stuff done in between the sofa, TV and trying to stand the pain... and get groceries, etc... so when I noticed about 10 days ago or more now, I was having to pee so much, which hot weather, drinking lots of green tea and water, and the Lasix, does that to me... but I noticed it was "way worse" than the usual.. then I noticed I was burning, and the pain began to feel more like "kidney stones" as I had before, but it had been years ago from the last time. I had just moved back here, and this was before I had my Medicare, but I spent 4 times in one month, at the ER in a neighboring town, with 4 kidney stones,.. trying to get them to pass with lots of IV fluids, pain meds there, then they would sent me home with a few, and within about 5 or 6 days, the pain was back and I was back at the ER... repeating... finally I passed all of them, but it was a nightmare... after that, I have probably had a couple of small ones I passed... but I don't usually get UTI's and if I do - most of the time, I really don't have "symptoms"... or thought I didn't, but this time I KNEW this was more than Lupus and RA Flares... sure enough, a severe UTI, so shot of corticosteroids and a huge 14 day round of Prednisone, and Levaquin for the kidney infection... I got the meds on Wednesday last week, and even yesterday, I am still not getting over any of it as fast as I felt I would. SO yesterday, my Rheumy's office called late to tell me they are NOT in the OFFICE MONDAY! So that means TWO trips anyway to Dallas, because I have to see the Pain Doctor Monday, my pump has to be filled.... I have SO MUCH I "want" to get done and some I NEED to get done, but I also know I HAVE to get WELL!!!! I am thankful for the good news on all of the colon and endoscopy stuff... really, but I just wished these stupid other CHRONIC ILLNESSES and PAIN would just give me a few months break, I HATE to ask to "go up" on my daily Prednisone which now is 5 mg daily... BUT it looks like if all of the other meds, Plaquenil, MTX, Enbrel, Prednisone small dose, etc d not start working better after these flares I may face a higher dose of Prednisone for a at least while, then taper back down again,... I still have the appt also with the Endocrinologist at the end of the month ... to see if the Thyroid and/or Parathyroid is still too HIGH and what we do about that. From what I've read and researched, the Parathyroid often is cause from a small tumor (usually benign) and may take a small surgery to get rid of... and of course "thyroid: issues run in my family, and medication often fixes that, unless again you have a "goiter" that has to be removed.... so again lots of "stuff" (when it rains does it ever pour)! More Information Below on the Parathyroid gland and the Thyroid Glands, What they Do in the body, and all of the issues that can happen due to any diseases of these glands.... http://endocrinediseases.org/parathyroid/parathyroid_background.shtml
As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.
Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.
But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.
But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.
Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!
Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...
I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that
were scheduled one for early morning and the other mid afternoon in two
totally different locations, about got to me this morning. But, my son
and I did have a great time together. I was glad he went. We got to talk
about lots of things, as well as he got to see my Rheumatologist and my
Pain Dr. whom he had not met either. I wanted him to witness himself
what fantastic doctors I have, and he immediately saw that my
Rheumatologist was truly a "God-send" as well as my Pain Doctor also.
But, now my Rheumatologist wants me to see another "specialist" which I
did not even know existed, which is a Metabolic Mineral and Bone
Specialist, mainly due to the Osteoporosis, in which he was extremely
concerned due to those that have "fractures of the hip" especially due
to osteoporosis, have a 20% HIGHER mortality rate than those without one
and without osteoporosis, plus just having the RA and Lupus, already
leads me into a higher possibility of not "living as long" as others
without it. This doctor also may have other options to "treat" the
osteoporosis, and may provide answers about why I'm having the "chilled
totally drenching night sweats, since this could be related to an
"insulin" problem with my metabolic systems, which can be a
"parathyroid" which is NOT related to regular "Thyroid conditions" and
other issues that may lead us to find out more about chronic health
illnesses, that maybe what I could be having and don't know it. So, I
have to have another bone density scan next week on Tuesday, then
schedule an appt with the specialist at at SW Med Center in Dallas.
have to have the scan and results to take with me, so I am waiting
before I schedule the appt. Hopefully it will be soon, so we can find
out what could be going on, which as he also said, I am a very
"complicated" patient, which ALL of my doctors say, so we shall see.
Then I had my pain ump refilled, and I guess i should have "insisted" he
up my meds. I am in so much pain again today, I am about in tears.
he thinks my finger problems, are eczema, so he called in some oinment
for those increased my Sulfasalazine, by 500 mg more twice daily, and if
we don't see results in 2 months then we probably will move on to
Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more
months I am not much better. So, again a med change... probably....
anyway, lots going on, and I hurt like hell... but I've got to get out
briefly for a couple of things, then I hope to have myself on the sofa.
We have yet another horribly hot day with "heat warnings, again... for
about the 5th day.... I will probably not post much more today, just
wanted to let you know a bit about my appts yesterday...
I am not near any of the "walks". But, I wanted to show my support so I joined "virtually" the IFAA Team!
There are dozens of reasons why WE need as much support as possible when it comes to Autoimmune Arthritic Illnesses!
We need more research, more Rheumatologists, and Pediatric Rheumatologists also. We need better medications, hopefully someday with less side effects, and of course we desperately need to find a CURE! and/or STOP these horrid life altering, life stealing illnesses, diseases and syndromes well before they take over!
So, I invite you to walk, or walk virtually. Or give a donation, and you can "give" what you feel you can. Any amount is one more step for hope, help, research, medications, reasons why our immune systems go "haywire" and A cure.
I did not realize until this morning that the actress "Kelly Martin" whom I just happen to LOVE, is the National Autoimmune Walk Ambassador this year! Her sister who suffered symptoms for a long while and then was diagnosed with Lupus, that later took her at a young age gave Kelly a longing to try and stop these horrid illnesses.
I am an avid fan of Kelly's. In fact I record all of her movies on the "Hallmark Channels" and sometimes watch them more than once. I think she is a tremendous actress and an amazing woman.
Here is a link to the page where she has an open letter about her personal situation due to her sister's illness and why she supports AARDA and this walk:
Since this seems to be EXACTLY what I am personally going through, I wanted to post this article! Never, ever would I have ever imagines, I would have cellulitis! What is MOST TERRIFYING IS THAT NOW I have TWO lumps one on EACH Upper Front Thigh and they are almost exactly where I gave myself THE LAST TWO INJECTIONS OF ORENCIA!!!! We are always "reminded" and educated about the risks of these medications, yet some of them more rare than others.... just a "heads up" for all!
Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!
I realize that this is in Oregon and one of the dentists that is
trying to get ORAL HEALTH a priority in Oregon's Health Authority http://www.oregon.gov/OHA/Pages/index.aspx
I gather much like Texas and our (DHS) Medicaid and so on, this is
kind of the same thing. The HUGE ISSUE and of course I ran into this
right middle of the road like a brick wall - that even though ALL of my
DENTAL ISSUES were caused by an Illness SJOGREN'S - NOT ONE Dentist even
took my Medicare Advantage Plan or any
type of Medicare Coverage plus even if I could have went through
numerous appeals, Humana probably would have not covered but about 40%
of the 15,000.00 PLUS - (turns out to be over 15,000.00 due to the
dentist "leaving off" the charges for the LAST 11 TEETH pulled the day
my dentures went in... which was another $147.00 EACH for the 11 -
making it another about $1,517.00 or so OVER the ORIGINAL "treatment
plan" I agreed upon and signed before the work began. This is a total
outrage!!! There is NO WAY ANYONE, and most certainly MOST ON MEDICARE
OR DISABILITY can AFFORD OUT OF THEIR POCKETS $15,000.00 IN DENTAL
BILLS!!! But. I had NO CHOICE!! As I have posted over the last
year when all of the mess began with my teeth suddenly "rotted" off at
the gum line and then falling out! I had 4 of them within 4 months
happen... well after the "whole mouth X-ray" revealed ALL of my teeth
were doing the same.... So, here I am with all of these Autoimmune
diseases, already a HUGE chance of infections due to the illnesses and
the medications I am on... and by the way that $15,000.00 was much
higher when I went for 2 other opinions!!! That was the Lowest in the
have told myself and said it here also... WE MUST FIGHT FOR DENTAL
HELP!!! When a chronic illness brings on this kind of destruction, there
should be coverage through medical insurance... the proof of how the
teeth "rotted" showed it was definitely Sjogren's that caused it... so
there is NO question as to a medical issue causing the dental stuff...
Anyway, this article caught my eye from Oregon... and I wanted to share
this with you also... this is another HUGE PRIORITY (among ALL of the
others we have with Autoimmune and Autoimmune Arthritic Illnesses....
The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.
As new data comes out of the study that IFAA helped to get initiated and to get relevant information out to everyone that really is vital to our lives and how these illnesses have and will effect us, I wanted to post this from the IFAA
2014, IFAA led an Early Symptoms of Autoimmune Arthritis study to
determine all symptoms that could occur amongst six diseases within the
first 24 months after initial onset. From these symptoms we are
narrowing it down to 0 < 12 months per disease and 0 < 6 months
per disease. While we are currently analyzing everything from joint and
chest pain to eyes and canker sores, we are finding out
some very interesting things that will help us create new Early Symptom
Disease Models for the diseases individually and the group (so that
undifferentiated patients have a better chance of diagnosis with
treatment in the future).
So how many of YOU had 'brain fog' in
the first 24 months? Here's how many had it in the first SIX MONTHS.
It's not so abnormal, is it?
My dentist said it was NOT an invasive as a bone graft, and once that is done, then around the middle of November I go back for another set of X-rays to see how well the jaw bones are filling in and healing where the teeth once were. I pray they will be ready for the mini implanted pins and I will get over all of this dental mess once and for all. It has just been not only a pain in the mouth, the wallet and has been a massive pain in the butt. Anyone that ever has to go through the entire process of having all of what is left of your teeth pulled, to then go directly to dentures, and them NOT hold as well as they should... YET, you must wait patiently or for some impatiently... for the bones to "fill in" where the teeth were before you can have the "mini implanted" little bars to hold them secure... I HONESTLY FEEL YOUR PAIN AND SHARE YOUR NIGHTMARE!!! It was not really having the teeth that were left pulled 5 at a time... the "laughing gas" helped to get through that. Besides I am not afraid of needles, even though they are never pleasant in especially the roof of your mouth anywhere... or even the pulling of the teeth in itself. Other than mine being tough as hell to get out (you would think the Sjogren's would have had them degenerated enough that they would come out easier. That is not the case. Mine had a tendency to break, split, fly over the room, and give the dentist a run for his money, as my Dad would have said... But, that last go at the rest of the front teeth, which I had 11 left! Then to have that sewn up and put the dentures right in over the top of all of that where they were pulled... was not a great experience either... Honestly, I still have soreness around my lower part of my nose, and upper lip, even the "hinge" of my jawbones on one side wants to almost "pop" out of place at times. Many people say I am "LOUD" when I speak, but it is surely NOT from my mouth itself being big... in fact it is just the opposite... my mouth is so small, that is why my teeth were so crowded together, even after 2 or 3 molars being pulled thinking I would be getting braces years and years ago, and my 4 wisdom teeth laying cross wise down in my mouth having to be cut out because there was no place to go to pull them out.... I have always had to use a small fork and a small spoon to eat with... there is no way I could try to get a larger spoon in my mouth... like normal people do.... I got my "mouth" from Mom's side of the family as far as bone structure - a great deal like my Grandmothers on the maternal side... yet I got my Dad's side of the family - Teeth... which we all my son, my Dad, My half -Brother, the larger two top teeth in the front, and just a bit larger teeth that just did not fit very well into a smaller framed mouth such as mine. I went for eon's hating my teeth, and you would very rarely see me smile in front of a camera. So, I did get my wish of "beautiful teeth"... after I was 54 yrs old, and had to have mine gotten rid of and had "falsies" LOL.. put in... but hey, they are MINE and they are beautiful... sometimes we get what we want, but just not in the way we expect it to. Thus, I am trying to once again be patient, hope that tiny little hole that is driving me nuts on the top right hand, where there is that little oral-maxillary fistula or fissure... that just makes it sound HUGE, so I don't really like calling it that , but that is the medical term for what it is.... By the the while I am still trying to figure out the #hashtag business of #rhia or #lupus or #rheumatoidarthritis or hummm what about #drcampo wonder what that would bring up... I do have something else I am thinking about doing... and if you care to join in, I would love for you too... One of the bit online health sites had a "blog" kind of contest that everyone could participate in for 30 days during a certain month of the year. Well, somehow I got my wires crossed (what is new) so I had posted here and on my blog all about it. Then I got to seeing some of what I had actually found online was last year during a month, not new for this year... so of course after finding out for sure from someone there, I took all of it down from my FB page and from my blog. BUT... I had this idea since I sometimes have a difficult time trying to decide what "subject" to go with and write, I would use some of their ideas that I enjoyed thinking of writing about and doing for that the month of November on my own blog. I may mot be able to do it exactly ALL 30 DAYS... but it would be fun to just pick one & try and do one a day and write about an entirely different subject each day. NOW the FUN part is I would LOVE TO HAVE SOME OF YOU GET ON THE BANDWAGON and POST also on my blog... I could post the original idea, along with my "views" on the subject, then have each of you that wanted to - to put yours under it where you click to go and make a comment!!!! I may even make one post and just keep that one going all through the month, doing the same... so if you would like to joint me, feel free to take a look at my blog. I will post a few topics to get started with, and if you can think of something you might like to blog about or read about feel free to private message me here, or on Google since Blogger is part of Google... and we will see how much fun we can drum up :) I will decide whether to begin "here" on a blog post with the ones for November OR whether to put them on another page... I will let you know for sure this week sometimes....
Perfection we find in one rose... and perfection we seek always in ourselves and into what we feel inside is meek....
Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.
My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.
The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.
The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily. They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.
I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain.
I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!
Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.
It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.
All of these did come out of a "medical dictionary online"---
Definition of ILLNESS:an unhealthy condition of body or mind : sickness
Definition of DISEASE :
an impairment of the normal state of the living animal or plant body or
one of its parts that interrupts or modifies the performance of the
vital functions, is typically manifested by distinguishing signs and
symptoms, and is a response to environmental factors (as malnutrition,
industrial hazards, or climate), to specific infective agents (as worms,
bacteria, or viruses), to inherent defects of the organism (as genetic
anomalies), or to combinations of these factors :sickness, illness—called also morbus
Definition of SICKNESS
1: the condition of being ill : ill health
2: a specific disease
Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality
Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena
1: an observable fact or event
2: a: an object or aspect known through the senses rather than by thought or intuition b: a fact or event of scientific interest susceptible of scientific description and explanation ....
I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena, ...
Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.
Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.
Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.
At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.
I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...
But, I also needed to kind of update everyone about where things stand for myself ...
My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..
I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems, had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.
YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...
So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....
Sometimes this world is truly NOT fair....
Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning...
Keep watching because they will never get rid of me! :)
As just about anyone knows who follows my Facebook and blog site, you know about the accident that happened on March 26th 2014, to my husband Jim. Most of you knew I was in Washington D.C. at the time with the Arthritic Foundation, for the Annual Summit on Capitol Hill. It was my very first time to be in DC, as well as my first time to get the opportunity to voice my own personal struggles, along with all of our struggles, involving autoimmune illness, medications, lack of doctors, especially Pediatric Rheumatologists, and so forth. There has not been nearly enough done about these illnesses, ranging from not enough doctors, not enough research, not enough knowledge to those who have the illnesses or know someone that does, whether family, caretaker, friend and so on.
I felt my voice there and since then has been integral in helping to move forward and fight against illnesses such as RA, Lupus, Sjogren's, MS, FM, CFS, and the gamut of Autoimmune illnesses that we do not even realize exist. A new factor for me this year had been that I have "pernicious anemia", which is an autoimmune illness. Rather than being "anemic" my body does not absorb enough out of my food, and keep it going in my body as it should, thus I take B-12 supplements, which by the way, it is the B-12 it effects as far as the autoimmune part of this. Of course I am on a HUGE daily dose of Folic Acid" which is B-6, due to one of the medications I take. It depletes the body's Folic Acid, so I must supplement it daily with about 400 Times the amount a normal person would need. I found out that much of my horrible sores, thrush, and mouth ulcers were caused from a lack of Folic Acid. Once I began using it daily, at a high dose (it is water soluble so you can't get "too much") my mouth is not nearly as bad about having all types of sores, ulcers, sore throats, thrush and so on as I had before.
I had not given much thought that due to the "nature" of what all has transpired that I would not be able to "voice" the everyday thoughts I feel surrounding what all happened, has happened, and what may or may not happen over the next year. In a way, that makes me very sad. The very one outlet I have to things in life, from illness, to children, to Mom, marriage, and my own frustrations with illness, I always knew I could come here and "talk" about what was happening and not at the time had to "censor" what I spoke about when it came to life. Yet, now I feel this heavy burden, although never was my fault, and I never gave any idea to it, I am may not speak about all of what is happening as the time over the next few months go by, So, if I avoid that subject it is certainly not because it is forgotten, or it is not still a huge everyday part of my life, but because life is as it is, I have to "alter" my own voice, as far as my posts, and not speak, unless it is in a very general sense of what happened. Most everyone that comes to my blog, for the most part are people that are close to me, enough that they already know the ongoing saga from March 26th, 2014. So, there is really not a "need" for me to tell others, but more of a need for me to be able to "release" my ongoing revelations about that being what it seems life as it is right now evolves around. You tend to get up when the "rooster" crows with the thoughts of it spewing out of your brain, and then all day long it seems every thing, every where, all that you do is a reminder of the nightmare of having something so horrible happen in your life. Each time I close my eyes, that is a last thought, and each morning I awake with it as a first thought, and all through the days you tend to live out in thought of it. Then while you sleep the PTSD hits, and it can also happen during waking hours. All of you who have Post Traumatic Stress Disorder know exactly what I mean... you spend your days trying to knock it off your shoulders and in the night, you try to take it out of your dreams, so you can at least have some peace during your sleep. Good Luck. Many people and I have even had the thoughts that "things" would be better as time goes by. Memories fade, time helps to heal the damage physically, mentally and emotionally. I can tell you that this... time has NOT erased, nor has it made it any better. If anything, each passing day the building up of being totally in damnation by all that is occurring around you, only grows larger, nothing fades. From the very 1st phone call, till the last piece of daily mail, to the questions, and I mean just daily questions, how are you, how are you getting by, how are things??? Questions, that sometimes I wished I could just say things SUCK! Things are worse, no better... life has lost its luster filled wonder, my dismay of voice, of writing, of being so caught up in something that I did NOT even have anything to do with, is running rampantly through my life and through my very veins, like the blood my heart pumps with every beat. You DON'T heal, not that quickly... you DON'T stop feeling guilty over something YOU DID NOT DO! You don't find a quick fix... there is none... so I plunge myself into trying to write, I plunge myself when I feel like it, trying to throw out all of the stuff in this house that are reminders of what life used to be like. I DON'T want to even remember a "good" or bad moment... I don't want to have to fear the past, present, or the future. I am sick and tired, of hearing, feeling, and being sick and tired. I am sick of bitching, griping, moaning, groaning and crying. I am sick of listening to others try to tell me it will work out, it will get better, because right now nothing seems better, everything seems out of sorts, out of whack, and I have lost all patience with those who think they can "fix" it for me. There is NO FIXING what is permanently broken.
My mouth and teeth for example. Let's get on that band wagon and have a talk about those. Of course not one dentist could fully assure me that my mouth would be better when all of my teeth that Sjögren's destroyed, when pulled out and dentures put in would be 100% better. I knew that. I am far from a moron, or from a dreamer. My "dreamer" stage left me a long time ago, after my job, and my life almost fell apart in Seattle. He threw enough sand in my eyes, and did enough damage to my heart, that I no longer am the "dreamer" I had been. I truly feel that is why the poetry I used to be able to write, sometimes 7 or 8 daily, don't come anymore. When Steve, did what he did, after bringing me over 3,000 miles away from my "home" and family, with promises that I would have a wonderful life in Seattle, to only shoot all of those good feelings down within a year or a little over after me getting settled in, with his cheating, lying deceitfulness... dreaming ... as far as being a dreamer, left. That is when a "new voice" emerged and my writing became totally different. It will never be as it was when I was that creature of wonderment, of discovery, of believing people truly cared.... he literally took his hand, reached in and pulled all of that from my heart, and threw it into the Sound at Seattle... for there is where all of those wonderment of feeling lie... in the Sound of Seattle... I can still at times feel the winds blowing across as I looked at the beautiful city, when I walked daily on Alki, loving each day there, and breathing new life, wanting and knowing a new glory would emerge.
I don't want to sound like I am that unhappy being here around my Mom, kids, and Grand Kids... and I am not putting down our lives, or feel "cheated" in some way as far as why we are here, and why we will probably continue to be right here, probably in the same house till Gabriel's horns blow. Yet, "cheated" from living life as I felt we would I can say is a terrible disappointment. Kind of like FINALLY after years and years... of not being able to say I was a "published author".... I got that opportunity... not only once but TWICE I can say I have two published books, and even have a "check" from the seller for two of them that actually sold! I am so tickled about it, I am not going to "cash" it, but frame it and put it on my wall by my computer and desk. Even though it is a mere little over 6.00, it still means that it is priceless to me. It gave me a tiny glimmer of "normal" and that a minute bit of my "hope" and Faith could actually coming back to me. Which is far from where I've been in the past 8 months or so. I had given up on normal forever, and as far as the glimmer of hope and faith; believe me it has been fading fast in the background of all that has taken place since 2005 and actually a bit before then.
As I had titled this post "Two Days of Insanity"... there were reasons for the title. I thought about "re-titling" the post, but whatever it is "called" will not change the meaning of the post in itself. I have been trying to squeeze in lots of my own personal advocacy and activist work, over the months, but between being gone to so many different appointments, taking care of all that needs to be done here at home daily. from taking out the trash to running to the market, it seems my time either is gone, or the energy that I did have in my "spoons" for the day are used up.
That should "stick" with me more than it does. When others ask me how I am doing, feeling, whether they mean illness wise, emotional wise, from autoimmune illnesses, to his issues with spinal cord injury, I really should say well I began this day with 8 spoons, getting showered and dressed took at least 2, maybe 3. By the time I had coupons ready, a list done, and ads matched up there flew out at least one at the very, very least. THEN I am looking at having at the most 5 spoons left. Well, by the time I run errands, get through the market, which here seems to be a nightmare any day of the week, or have to go and do something at Mom's,or it is laundry day, or I have to find and fix something for dinner, if I had already used up the left overs.... so I can contest, by then there are OVER 5 spoons used up, and my day is not over yet.
I still have dishes to do, right now we are fighting "sugar ants", which I was raised here in TX, so here we called them "piss ants". Don't ask me why, but I always gathered it was because they were so extremely tiny... they will sniff out one crumb, and within an hour invade an entire bowl of dog food, if you are not watching. I decided to try something "harmless" to the dogs... so I read putting back soda around their bowls would stop the ants. They won't go into the baking soda. So, guess what? Both dog food bowls have baking soda surrounding them. Knowing my "Chi_Weenie".
Then I also read ants hate tea bags, like after you brew your tea, let the bag air dry and put it in the corner of a shelf where you have stuff it won't hurt and where you have seen ants. Hell I even bought the "good" any bait traps, and I am still finding ants in stupid places. I guess they are either hungry or thirsty. But, dammit I am sick of trying to keep from spraying Raid and getting the heck rid of them. Even though about a week ago, I bought "Raid" for ants mainly with a get this "Lemon scent". I hope the hell someone does not think it is furniture polish!!! And I sprayed it on a rag, and wiped down the splash boards window sills, everywhere and everything I could without getting it around food or anything else. And even after doing that, wiping, vacuuming, and spraying where I could. Plus I leave nothing "open". Anything from chips to bread, goes in the fridge. If it is something that possibly will attract an ant it goes in plastic or glass containers with lids on them. So, that the hellish little devils you would think would move on. I am NOT a fan of any kind of "bug".... from a spider, mosquito, I don't care what it is, if it is "creature" of any kind, it does NOT belong in my house. So, I am a real stickler for spraying the yard, all around the outside perimeter of the house, and then I keep the roach baits and ant baits out and update those about every 6 months. The ONE thing I cannot get rid of and that I despise so badly is those little freaky looking "newt" lizard looking things. They just make my skin crawl. Oddly enough all my life here in TX, before I went to Seattle in October of 2001, I had NEVER seen a "newt" or whatever at any of my homes... never... no kind of lizard thing. I had a mouse once, and actually had a possum climb up our pipe that came into the house to the water heater... and she actually took her scared butt down, got by the steps of our front porch and stayed there for weeks with babies clinging to her. It was weird. But no damned things like that. So, the first time I saw one in our home we live in now, I had no clue what the heck it was. Weird almost a pink iridecent looking thing that ran fast, looked like some kind of strange lizard, and I was hell bent to rid my house of those little bastards (excuse my French)... so here I go online to find out what to do to get rid of the damned things. We had gotten just about rid of the few mice in the attic, at the time they put that insulation down that is kind of like shredded looking newspaper. Other than that an occasional water bug, which won't last long here. or a spider that I also despise, thus I just knew I would find something to rid my house of those things. They certainly were not the cute little "GEIGO" Gecko... and even if they were I don't want them in my house....
Well, guess what ladies and gents! It is almost impossible to get rid of them. Undoubtably they are not effected by bug sprays, roach baits, spraying the outside all the way around the house, including the porches, and those damned things are just not subject to any of the poisons or baits. Well, I figured out they "hide" in the grooves of the siding and the frames of the windows and doors. They also hide behind out two front porch lights. Plus I would bet they are in the insulation of our walls. So, everything I read said leave them alone, they eat bugs and are harmless. They maybe harmless but they sure as hell don't look or move as if they harmless. They creep me out just about more than anything other than a snake.
Anyway, how I ever got off on that tangent I am not sure other than the one thing that came to mind, is one of our "storm windows" on the kitchen window has just "popped loose" and was hanging there by a couple of screws. I almost fainted! If that sucker falls out and breaks we are in deep crap. They are not cheap, and we still need to buy all the ones that go over the windows in our music room. There are I believe there are 5 of those at about $80.00 plus a piece, because they are made to specifically fit the windows. We were going to get the man who put up all of the rest of them to get us those for a bit cheaper rate, and then he would put them up ... of course something else always comes up thus we did not have the money or time now and again to finish them.. and they need to be done... those old windows back there do not even have any of the push pins and the stuff you put around the windows to seal the glass in.... the glaze is just about out of all of them, then we had hail knock a hole in one while Jim was in the hospital, so I have it all put together with cardboard and lots of duct tape... 9,999 uses for duct tape, a wire coat hanger, and WD-40!
More later.... got to get dressed to take my Mom to shop...
I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjögren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing by myself and by Jim and all of my family through this... you guys and gals are the greatest....
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.