Showing posts with label rheumatic diseases. Show all posts
Showing posts with label rheumatic diseases. Show all posts

Tuesday, October 23, 2018

My Latest Addition of my Newspaper! For Tuesday!

Tuesdays Addition of my Newspaper containing some great articles and information from the Arthritis Foundation and the College of Rheumatology and the Annual "CARRA" Conference!




http://news.autoimmunearthriticsystemiclife.com/#/
College of Rheumatology



Annual Meeting of "CARRA"

http://blog.arthritis.org/news/american-college-rheumatology-2018/

Friday, June 9, 2017

Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life



I've been basically "drowning" in my own sea of dispare over the past several months. TODAY being the 1 year anniversary of my Mom passing away, of course makes things even a bit more "difficult" to hold my head up and move forward.

I have a close relative that talks often about "being lonely" and is alone. In other words right now there is no "one significant" other, and I totally relate. My situation is much the same. The only "significant" other for me, is Peanut, my "Holi-Terrier"... as I call him! :)

So, I get the times that you wished there was someone there to talk to, to go to the market with, to go out and grab a bite to eat with, someone to be with you when you go through tough surgeries, or doctor's appointments... and just basically someone to "share" life's up's and down's come what may.

After my last "breakup" I told myself, I would NEVER "commit" again. I feel as if there are basically "3 strikes" against me as far as very long-term relationships, and for me, that means I am just not cut out for the "relationship" thing anymore. Possibly I was NEVER cut out for it, but I was damned and hell, that I would NOT give up! Thus my 3rd one, I thought was for "infinity". Well, NOTHING here on this Earth is for Infinity! One way or the other ALL whatever it be shall come to an end.

I've given much thought to either venturing out on my own, to a club, and I tried the church situation for awhile, and I need to get back to going. After I had all of the problems with Mom, then me and my own surgeries and so forth, I just had to stop going for awhile, until I was well. Furthermore, I really feel badly stating this, but although I was a "new member".... not ONE PERSON ever even bothered to check on me, or see why I suddenly stopped coming. This is after I had "joined" the church. Frankly, since I was actually ill, and had surgery etc. it really hurt my feelings that not one soul bothered to check on me. Besides, I (and maybe it was just my own stuff) but felt like my "tidings" were not "enough" weekly. Yet, I was giving what I felt the Lord asked me to, and also being with only my income which is very low, it was as much as I could give at that time.

Anyway, not to get too deep into religion, but it left a bad taste in my mouth. Yet, I will go back, it maybe that I go to another church, and not back to that one.


I have long been a follower of "Creaky Joints" a Non-Profit started by Seth Ginsberg who himself developed a Rheumatic Illness in his 20's. Like many of us, he found there was just not enough information out there for patients and caretakers. Actually in many ways there was not a great deal of information back just a few years ago for the medical profession. I was shocked to find out how many nurses, and even Physicians knew little about some of the autoimmune illnesses, and many tied into RA, Lupus... things like Sjogren's, Raynaud's, and MANY other AI illnesses that are "joint related" yet also effect other parts of the body.

At times I felt as if I was "educating" my own doctor. So, Seth opened his mind, his heart, and his talents to begin "Creaky Joints", which recently began a new program and app actually called "Arthritis Power". I just recently got it to download on my phone, and I have it open on my computer.

As I begin the "journey" through it, I hope not only does it help me, but it gives me the
"heart" to once again write on my book, and get myself advocacy back on tract. After the ordeal with my Mom in 2016, and then her passing away only 6 months after showing signs of "Lewy Body Dementia", it was quite a shock for me, and my family, friends of the family and other family members.

So, rather than ponder this "lonely" phase in my life, after talking with a wonderful woman on the phone earlier this week, that is a part of "Arthritis Power" I was inspired to try and give myself a break, and find that "voice" that can take me wherever I want to go, whether writing, blogging, being more involved in the advocacy, activism, and Ambassadorship roles that I so love being a part of.

So, here below are a couple of links. You can go to these and find out more information about "Arthritis Power" and "Creaky Joints".....

https://creakyjoints.org/
https://arthritispower.creakyjoints.org/
http://www.pcori.org/

Patient-Centered Outcomes Research Institute

https://www.uabmedicine.org/

University of Alabama At Birmingham



"PCORI" and "UAB" both sponsors of "Arthritis Power"




Tuesday, November 18, 2014

The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE

I've just about had it with everything. I cannot stand when someone wants ME to be at their beckon call. But, when I do not hear a word and am suddenly "cut off" it seems, I cannot just hop up and fly off for 3 or 4 days for an event. I am really upset, hurt and pissed that I am "used" when they want me. Then they get me all hyped up to make another trip that is supposed to be the first part of December. Now I cannot get a response by email at all. It is like I am a "stranger" and Don't Exist... but if they need me in the future it will be expected for me to "jump" up and do exactly what they want and when, and fore go the thought that I am chronically ill, and I can't just take off at a moment's notice. And if I find out ANY of my "SO-CALLED" friends have had a thing to do with it, I will really be peeved.... but I can see a couple of them "climbing" the ladder of "fame"... by running over others to do so... anyway, I am just about finished with it all. I am going to take all of next year, or ever how much it takes, which maybe a year, less or a bit more, and write my book. I am sick of putting it off for "trivial" pursuits that now seem like it does not matter much what the hell I bent over backwards to do and help out with. I am no more than someone that is taken advantage of due to the fact of my passion about helping others. Then I am scooped up and heaved in a corner when they are "through" using me. I have been having horrid, night terrors, now for about 2 months or more... and last night really told it all. It was so bad, I was screaming and crying so much, I woke Jim up and he had to come out of the bedroom to check on me. Then it took me almost a half hour to truly settle down and figure out it was a night terror and not real. Yet, it did finally get through to me, when in my nights sleep, I am being put down, picked on, cast away to the sides, and everyone ignoring me, treating me like dirt, so badly that I could not even breathe... which woke me up, because I felt I was literally suffocating... and could not breathe... I am being "drowned" by the very thing I loved to do the most... well 2nd to my writing and blog... and that is my volunteer work... so I am bowing out for the most part, to allow those who choose to cram their "high heels" in my back as they walk all over me... (I saw this when I worked for a woman boss)... petty jealousy, wanting to take over and get credit for everything, taking someone's else hard work and saying it is theirs, and the subject matter goes on and on... well, I am pulling those damned "heels" out of my back, I am going back to write my 3rd book, keep up my blog, and keep to myself... so I may not show up or say as much here especially after the holidays are over. I feel I've been "used and abused" enough, and I am freaking sick of being tortured during my waking hours and it causing me to having horrid night terrors... it is time to get out of that "ladder climbing" crap....

Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.

I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen... 

I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.

Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago. 

I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump.  I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...   

TO BE CONTINUED


Friday, October 24, 2014

Lupus?RA?Sjogrens?FM?CFS? Early Onset Parkinson's or Bartonella??? Here are some links and ideas to consider....

I am sharing this with all of you, especially those of us with Lupus, RA, MS, FM, ME/CFS.... ALL of us have had years before a diagnosis, then it seems we go through more than one most of the time... and then wonder if "the doctors have it right" or if they are also grasping at straws, and giving us a "diagnosis" to just calm out fears. I know for myself that is true. About a month ago, I saw a dear friend from high school, and am very happy she is back in our hometown. She had mentioned some information about a particular illness that usually comes from being around cats, or other animals, or things like fleas, ticks, than can be carriers of the illness Bartonella .... she was telling me about a doctor who of course more of them on the side of the "animal type" cat scratch fever... that just about all of us have heard of. The "symptoms" can be almost to the "Tee" of Lupus, RA, FM, CFS and so forth... severe fatigue, low grade fevers, flu like body aches and pains, joint pain, headaches... many of the exact same issues we have, brain fog, that are associated with all of these illnesses. Well, I took what she said to heart, about the doctor now believe that this illness, can very well be, the great imitator of some of these illnesses.... and later people have found out, they may not be "ill" with things like Lupus, or RA, or be manic depressive, or even one woman was diagnosed as schizophrenic... but they were infected with the Bartonella bacteria. Thus, it also goes right along with being very close to Lyme disease, and also I just has mentioned, after hearing from a friend that has "early onset Parkinsons'" that Lyme disease can be the great imitator of early onset Parkinsons.... so all of this kind of hit me like a ton of bricks... it could be that there are "many" or at least some of us that don't have any of these chronic illnesses, BUT have gotten Bartonella one way or the other (by the way I've been bitten badly by one of my cats in 2005 while in CA) and I've also had two dog bites in my life... so I have to wonder if in fact there is a possibility that all of this is some how related... I also know if you walked into one of your doctors offices and mentioned it, they may look at you like you are crazy and call the nut house to come and carry you away... but I have one link I am putting here and will put this along with more links on my blog....
http://www.galaxydx.com/web/human-health/ if you are also interested take a look... it sure does ring bells with many of my symptoms.




http://www.cvm.ncsu.edu/news/2012-05-04-Uncovering-Bartonella-the-Stealth-Pathogen.html 

http://www.lymedisease.org/lyme101/coinfections/bartonella.html 


http://www.cdc.gov/bartonella/





Wednesday, July 30, 2014

Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Sunday, March 9, 2014

(Part 3) My "intuition" was right... it just never ends... I feel as if all my life will be one big ball of a foggy brained, Autoimmune RA/Lupus/Sjögren's and who knows what else of a disaster...

Part3 - How many Opinions does it take from who many "Physicians" before you feel at ease? Peering into the Looking Glass of Autoimmune Illnesses, and deciding where to begin.... and where to END? 

Can you put your "health" in the hands of those that are supposed to be "educated", who have been through testing, who have taken a "vow" to  - "Do No Harm?" - and these days what does that small sentence truly mean.... "Do NO Harm"?

Trust... Trust who? Well from what I've experienced over the past 3 to 4 weeks, I am not sure who is the real insane person around? The doctors, the insurance company, me... or whom... but I do know NOTHING is getting better at all.

I called my pain physician's office yesterday. The pain that has decided to plague my body for a 3rd time in about 18 months has reared its ugly head again. I tried to tell him last week, when my medication for the pain pump to be refilled was NOT THERE! It was sitting in some office in Phoenix AZ! So, I go without my "extra boluses" so I do NOT run out over the weekend and the pump start "beeping"... and run out before Monday. I had already been "hurting" worse for days before that. Given the fact that I was NOT given my biologic when it should have been given, then surgery, then not being able to do anything for 6 weeks because of the surgery, then I got sick and was ill for weeks, turned around and low and behold the beginnings of not just ONE flare but TWO! RA and Lupus! Then another 14 days to try to get SOME KIND of BIOLOGIC the insurance WOULD pay for, and then waited for the prior authorization that went to the wrong pharmacy. So, that all had to be redone and sent to the proper place. All the while I knew my body was in the stages of rebelling. I felt it each day getting worse. Worse to the place, that once again I could sit in this floor, scream, cry, and beg... but that would not do a thing, but cause me to hurt worse.

So, after NO call back from my pain doctors office yesterday, I knew something was "wrong"... where his head is, and why after going through ALL he has watched me go through. Knowing my extreme health issues, or supposed to be knowing them, I get a call from his "nurse" who is a jackass anyway. I already had issues with her a couple of months ago over NOT getting my medication called in, before I ran out. Well, today was the day for me to call it in. When she called, I knew something was up. She goes on to tell me, that my doctor is calling me in some.... and he thought it would help with the "inflammation"... Well red flags went up everywhere... so out of my mouth came is it an NSAID? She paused, said wait a moment, and of course came back to say yes, Well, right back at you NO! Now this doctor has been seeing me since 2008, knowing ALL of my issues, and he knows I've had not just ONE heart attack but TWO! That is NOT including the GERD and all of my stomach issues. So, why the hell he became so "weird" about all of a sudden NOT upping my pain meds for a month is beyond my capacity to understand at this moment. After ALL he has watched me go through, and also portions of this beyond my control, their own crap with my medication not being there, thus I had to cut my meds "way back" for like 5 days... I already was in severe pain due to the entire biologic stuff... and now all of a sudden, for no reason, he decided to try to give me an NSAID? Hell, I would BE ON THEM, IF I could! I just looked at the phone as she said, well, I will call your other meds in Monday? What the hell? I am supposed to run out Monday, and they MAIL THEM FROM DALLAS! She knows that she cannot wait until the last moment to do that. OMG, I was ready to explode! Conveniently, he is out of the office "today". mmmmmm, he always is when you "need" something. I am still just blown away by his attitude, and I had even picked up on it, when I was at the office both times. Something at his office seems "off" now too.

What the hell is up with doctors all of a sudden? I've never seen so many weird changes of attitude, of how they treat their long term patients,  and the plethora of "lack of caring"... that I've witnessed in just three weeks.

Honestly, I trust my OWN judgement at this moment. more than I do several of my own physicians. I get the impression that their "realms" of health care have just about flown out the window when it comes to any patients who are on Medicare, Medicaid or a Medicare Advantage Plan. I've said it once, twice, and three times, plus... the government has their fingers so tied into all of it, that doctors cannot possibly do their jobs taking care of patients, all the while either the DEA, FDA, Medical Board, Medicare, Medicaid, other insurance companies, the government as a whole as ALL breathing down their necks.

I believe at last count, I've seen and heard at least 5 or 6 articles about "bad pain medication" in just the past week. Everyday over the course of this week there is yet another "gripe", whine and bitch about "pain medications" and addictions. Let me tell you right now, unless you have walked for ONE DAY, hell ONE HOUR in the severe amount of ever growing pain that myself along with so many of us deal with, you cannot imagine what that feels like, You cannot imagine in any way shape or form, how your entire body feels like it is a hot burning coal of fire.... from the tip top of your head, all the way down into the bottoms of your feet.

Then let's see. You have a job, you need to go to work. You need to take care of your home, your kids, your LIFE! HOW can anyone stand up and "deny" something for someone that they know will IMPROVE their quality of life?

The saddest thing about all of this.... it is just getting worse day by day... you have no where to turn anymore... family gives up, spouses leave, you are in nothing but a place of despair. Where do you go, which direction will lead you to an answer?

NO ONE, and I mean NO ONE should have to SUFFER THIS TYPE OF PAIN! Not one soul, should have to endure the kind of brain rattling, aching, like someone took a baseball bat and beat you from your toes to your head type of pain.

Our bodies are marvelous machines... when they are well oiled, taken care of , don't get knocked out of alignment, they can do some magnificent things. Yet, you allow your body to  get run down, draw upon some strange illness, whether it be a bacteria, a virus, some kind of chain reaction in our nervous systems, or just decides it is just going to run on 4 cylinders instead of 6 or 8, you are in one screwed up mess.

Just as I took a break for a few minutes, I saw an email come in from MedPage. I had been taking their newsletters for a long time, then stopped for awhile. About 2 months ago, as the latest and greatest news kept breaking about this, that and the other, when it comes to the health care industry (should say profession)... industry... yes, just another "brickness" in the wall I fear...

I come across this article. Much of it sums up exactly what I have been trying to portrait through my own words in these (parts... up to 3 now) posts about all of the crap that flies around throughout the entire medical world.

I will post the URL in this when I get my own "fogged" wisdom out of a brain that feels as if it has been drug through the mud... and not much med for sure... Why is it that Medicare in itself had doctors spend BILLIONS of dollars on "electronic systems" that now cause MORE red tape, MORE work, MORE PAPER, more time... and MORE Of everything BUT the ONE thing doctors are to do. spend TIME with their PATIENTS! In the "age of technology", when "phone" messages fly through the air, and not over a wire... when you can connect your computer to the internet and never plug in a wire, does it NOW take more papers than ever to see a doctor? I've been seeing my same pain specialist now for at least 6 years, for all of the exact things... yet I had to "fill out" an entire new set of paperwork that was about 10 pages of crap, they already knew and had on me. It was a waste of time, money, and they probably never looked at it what so ever. I would be willing to bet it went right into the recycle bin. Now my husband is a first time patient, and he sees the doctor for the first time, I can see "filling out" forms. But, my gosh, about 10 pages of that was just "stuff" to either initial or sign. And it is just exactly what the article I read talks about. MORE of a doctors and the professionals time spent screwing around SIGNING CRAP that means nothing to a patients level of care! When your physician has to spend more time looking down at a "whatever kind of lap tablet" that thing is they carry around now typing on, rather than examining you the patient, listening to you the patient, checking your heart, lungs, looking over your skin, everything else on you.... but honestly, I have watched my doctors lately squirm when they see me coming with my yellow or hot pink piece of paper they know is "my list", I can see them wanting to jump out of the window and run. Mine know I am GOING to have questions that I fully intend on getting answered before they leave that room. No more of going "unprepared". When I am off to the doctor, especially for a follow up that I've had the appointment for now for months, or I am seeing a new specialist for new symptoms, I will have them in that office until I feel I am satisfied with the answers. Yet, I've watched my own PCP one time set there and talk for an hour with me, then the next he stands with his hand on the door knob just waiting to catch a moment, that he can quickly escape. I realize he has other patients. I also know he does, thus I will not "over step" my grounds. But, I feel I deserve my "allotted" time. What they do though, is "allot" that same amount of time to about 6 patients, then that is there fault. If they overbook, just like the airlines do, then someone is going to have to either wait, or be hurried through. Normally, I find I am either the one being hurried through, OR I am the very LAST one called in for that "time slot" for sure. And what about this new thing of bringing you back to spend another 2 hours in that damned ice box cold exam room, when you could be sitting at least out in waiting area, catching everyone's germs as they come in! Nothing burns me up than for me to walk in, and 3 or 4 people come in behind me, all stating their appointments are scheduled the same time as mine! Hell, mine can't even see me and make a decent diagnosis and treatment plan alone with just me, much less 4 or 5 other "sick" people in the mix. Then of course here comes the nurse, asks all the questions, half way gets down what you say, takes your vitals, and says "okay" I will get all of this logged in and he/she will be in within a bit.... yeah right.... a bit my butt... more like 2 plus hours later, you have worn the seat completely out of your pants,  you have stretched, walked, watched the same pictures of their kids go by in a digital frame that have been there for years, looked out the window, listened to their elevator music/radio and all of the whispering, crying, hollering, and just about the time you are ready to explode, here they are "cordially" explaining about the emergency, and being "sorry" for being late... yeah right where the hell is my $25.00 you would charge me for being late? Some how that shoe never quite fits over on your foot, but it certainly does theirs.

I am so totally, utterly, completely, within, without, absolutely SICK AND TIRED... OF THE ENTIRE MEDICAL SCENE, that I could literally jump off this house, land on my two damned hurting legs... and I probably would feel better than I do right now!
What makes this even worse for me, is that this time the "brain fog", is more like a brain super mud... no transparency, no light, no even haze, just a thick mass of, I am not sure what I am saying or meaning from one moment to the next. I am catching myself repeating things in my postings, emails, even to what I say to Jim and Mom. Honestly, I cannot remember that I did just "write that" in the last post. Or that I told Mom that on the phone yesterday. I can't remember I saw this movie a month ago, or there would be no way for me to ever get home without a list. Whether I need 5 things or 50, nothing seems to "stick". All just seems to be sucked in a black, muddy sludge... along with all of the intense physical pain that surrounds me, and engulfs me.

I know people must be just thinking "oh, she is just having a bad few days", I am not one to "repeat" myself or forget what I just said. I do at times, but this is so much different...

continuing now on Sunday the 9th of March

I've tried to decide exactly how I want to handle the several glaring issues staring me down this next couple of weeks. I've  thought about everything from getting my teeth fixed, and how the heck I was going to get into that specialist in Dallas BEFORE they all fall completely out! This is NO LIE! I put the coffee on at 2:00 am this morning... yes the clocks rolled back and rather sleep you would think, but nope not me, I am wide awake. I happen to hear some of the neighbors coming home, opening car doors and slamming them, and their music just a blaring... yet my household, other than myself knew nothing. Jim has been "ill" again with flu like symptoms, so I decided or we decided I did not need to be exposed anymore than I had to. So I've been disinfecting everything. So, I went to take yet another BC powder, and I always have to have a small bite of something after I take one. they are quite unpleasant especially if any of it does not go down with the first drink. So, I grabbed a tiny piece of dark chocolate that was sitting there in the fridge. Now of course it is cold so it is a bit harder than not being out for awhile. But, just as I put it in my mouth and began to chew down on it, I felt something hard in my mouth. Well, it was not that bite of chocolate, because nothing was in it. So, I go "digging" around and find an entire back piece of one of my top back jaw teeth out. About the time the coffee is ready, I pour a cup and still something felt "odd" about that time I feel another piece of something hard, like a little sliver of some kind. Yes, sir it was another piece of tooth, BUT it came from a different tooth on the other  side of my mouth. Then I got to my computer, went to take one of my medications, and again I feel something "hard" in my mouth (not the pill) ... and again for a 3rd time off of another tooth, a chunk fell out! 
So, here I am at 2:30 am standing in my kitchen, literally watching my teeth fall apart. That was NOT the way I intended on spending my Early Sunday Morning. In fact, I had the intention last evening of possibly going to a new church this morning, depending on how I felt. This severe pain in my legs has just about sent me to the nut house, honestly. My head is not on straight, the brain fog is just beyond belief, and I am so utterly disappointed with the entire world right now, I am not sure where to even begin, 
My story sounds like child's play compared to some I realize. But, I tell you when you have been through what I've dealt with in the past 8 weeks or so, and don't forget it is just now a bit over 6 weeks since I had double hernia surgery. In fact this is really the 1st weekend I've been able to feel like I can do some things I had not been able to yet. I did vacuum the house, and I've done some bending over and picking things up out of the yard, trimming back some of my bushes that will hopefully come out soon... I still have not been on the exercise bike yet but that is due to the leg pain. I fear that my legs may hurt worse. With the entire situation with my pain doctor and his witch of a nurse, I assuredly do not want to get to hurting any worse if I can help it. 
I have SO MUCH I NEED  & MUST get done, or I won't be able to make the trip to DC. That will just break my heart. I've even thought about shortening the trip for myself, and coming home Friday. then let Jim stay until Sunday. That way the dogs only have to be watched after on Thursday and Friday until I get home whenever, and then Jim would fly in on Sunday and I'd have to go and pick him up. I am just not sure I can go yet at all, not in the shape I am in at this moment. But, it could be I would be able to at least make the Fly In... get to meet his Mom, and then they could have a really good visit, and catch up. It's been over 10 years since they have seen each other in person. So, it is totally important for him to try and go. Of course he also has so many issues with health, mainly severe arm, neck and back pain, I am not sure he will go and can withstand the trip either. 
His idea is "well I hurt if I am at home or in DC... well that is true but when you are at home... you can have your own "nervous breakdowns" without someone else knowing it. 

There is a great deal more I want to say here; so this post may have a 4th portion to it. 


I am not sure if I will do it that way, or just call this one "finished".... and begin anew ... probably begin new. Due to "perspectives" I realize that not everyone will "agree" or "disagree" with me on some things I've said, and believe.... 


But, I do believe that "WE" all of us .... talking now about the Chronically Ill Patients,  with illnesses that take away all that is good in our lives, and turn us inside out and upside down... Autoimmune Arthritis... and all of the other Autoimmune Illnesses... along with Chronic Pain, people suffering from FM (which I still believe is an autoimmune illness)... Chronic Fatigue Syndrome... and the other things like my friend just discovered... she has "Chiari"... where a portion of her brain stem is literally gone down into her spinal canal and is being "crushed"! It has taken all of her life of fussing, crying begging, screaming, tests after tests, and in a "test" for something else, they "found" this syndrome she was born with. 

due to the nature of this malformation... and the unbelievable story that it has taken over (I think she is about 50 years old, but she looks like she is 35) :):) for them to find this... she also has Lupus...  of which she is being treated for... Here is a link that explains this malformation... she does not know yet if she faces surgery or what... but by gosh anyone would be totally freaked out if they got this diagnosis after all these years.

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm


Please comment.... I want to hear from YOU!!!!


Thursday, March 6, 2014

PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)

Thus... this is a continuation of my prior post....  (PART 2!) -



Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...


Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...


First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....

I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients. 
I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at. 
Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!
Here is the article link and if you do a search you also will be able to find information on this and why it took place:


I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company! 
I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up.  But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit. 

Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund! 
If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!

Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.

I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say! 

So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was  even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????

*********** NOW. there is MORE to the STORY!!!!!!

After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning... 

This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore! 

And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.

AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.

She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.

Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!

Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course,  I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!

My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.

I also believe that after Mom's inquest while she was there, did some shaking and moving.  I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!

Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.

Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.

So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.

I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning...  and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.

ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from  a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!

I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.

I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.

I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!

There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....

 Patients’ Access to Treatments Act (H.R. 460)

http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/


H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/


"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015 


http://www.arthritis.org/advocacy/advocacy-priorities/dod-research


Part 3 to follow!



Saturday, November 23, 2013

Living Life In An AutoImmune Illness "Zone"....

Life as we have lived it... and now Life as WE that deal with AutoImmune illnesses Live it Differently  - Yet Happily!



As some of you know, I live in TX, just below the Dallas area. WE are having our first blast of very COLD weather today and over the next few days. We are now under a Winter Storm Advisory, with possibly sleet, ice, and some snow. Usually we get more ice than the fun stuff, snow. As I was talking about on FB, how I can "predict" the weather almost better than the forecasters can, the memories came pouring back to me of when I was able to go snow skiing. For years, before I had all of the illnesses happen, we went snow skiing, every year the week of my birthday. It was our annual vacation, that I saved up for as soon as I got home from the one we were on. I put money back in a "Christmas savings" fund every week for the entire year. Part we used for Santa and Christmas and the other was for our trip. Those are still some incredible memories for me. That was a time when I was on those skis, I felt completely "FREE". All of the snow and the forests, and just a quiet feeling of peace always came over me as I started down the mountain. Don't get me wrong... I took some hellacious spills. We always made videos so we could laugh about each other and our "Oh Crap" falls. You knew when one of us was going to take a very funny fall, because "Oh Crap" was all you heard! ;) Anyway, below is the post from Face Book that I wanted to share with everyone here. 


This may not sound like a "post" about autoimmune arthritic illnesses, yet it has all to do with then for me. Now I can no longer snow ski. In fact there are many things that have been crossed off my list, because I no longer do them. Mowing my lawn, and tilling the garden. Going to the lake and being in the sun. Making plans like a trip for something to do months away. I never know even a week before something is planned if I am going to be able to go or not. There are times I feel so bad that I cancel doctors appointments. I am just too fatigued to go, especially if the appointment are in Dallas. 


This comes to the place of why I can't do things any longer. It is certainly not age. There are MANY people I saw on those slopes as Wolf Creek Pass that were in their 70's. I am sure some of them lived close, so they have much more practice. But it is just the point "age" does not necessarily cause someone to stop doing things they enjoy doing. As you are reading this, I am sure you are thinking back to the times that are special to you also. Vacations, visiting family or friends, gardening, riding a bike, just a number of things that so many love to do, and do it. Age is not the factor at all. 


But, having an illness that can even strike when you are very young, in your teens, can stop you from doing many things that you loved to do, or would love to do. Is it a difficult thing to handle? You bet it is. I know I speak for not just myself but ALL of us with an Autoimmune Arthritic Illness, or any type of Autoimmune illness and/or Chronic Pain/Chronic Illnesses such as FM and CFS that also take away so many things in life that either we once took for granted; or at least never gave a thought that we would not be able to do them "the next time". Yet, it can strike anyone. Even though "women" are probably 80 more times or more to come down with one of these illnesses, men are also victims of these diseases. So, they do not discriminate when it comes to gender, age, or race. I have read articles and I am sure to do those studies that African-American people are more prone to these illnesses such as Lupus than other genders. I am sure researchers have been studying that one a great deal to find out why a nationality would make a difference. Also, why so many more women are much more likely to get the disease than men. 


My point to this is one, I did have some great memories flow through my mind when it comes to snowy weather. I also have these "blasting" memories of how much these horrid diseases take away from our lives. From changing relationships, families, jobs, and everything about your life basically, all of us can't help but be angry at times about it. Even though like myself, we come to accept it for the most part, I still feel at times like a piece of me has died... has left me... and changed me forevermore.


WE do learn to deal with it. I have in most ways. You find ways to compensate for what an autoimmune illness takes away. You learn new hobbies, or a different way to do them. You discover another way in a relationship to be close, and educate your spouse, and your family so they will truly understand the "why" of the things you can't do. 


As I often talk about my life, a flowing river, where there are bends, turns, white rushing waters, and then the bridges I flow under. The climb to the top of life's mountain. I scratch, crawl, and inch my way up, and sometimes I slide back down, as the rocks and stones may scar me, I still look up and know that is where I am supposed to be. 


For the rest of the year, and into the next year, I hope each of you who suffer and are inflicted with these still misunderstood life altering illnesses, such as RA, :Lupus, Sjogren's, MS, Still's disease, MCTD, UCTD, JA, pernicious anemia and the 100 other AI diseases out there, can look UP and reach up to see that you also can stand atop your own "life"s mountain".... and reach up to the stars... and feel whole again... even if that means you must "change" how you enjoy life in a new way!!!!



This below is a Face Book post from this morning... I wanted to say it also along with the above writing.... 


 I imagine you are probably getting it up there worse than we are. they have changed the forecast so many times the past week, I was not sure what it was going to do.  But my "bones" always let me know... My thumbs and fingers have been extremely bad this past week or so. Not just pain... now it is more of them not wanting to bend, I have like almost "zero" flexibility. I can't hold onto things That has been going on for a while now. That is partially why I suspected MS along with all of the other ailments. I have just lost so much grip and strength in my hands, arms, fingers, and I notice it lately even in my legs. IF I am up for a long while at the house doing things, or I go to "Wally World" and walk for a long while in there, my legs feel like "rubber bands" of jello ... I feel as if I am going to just collapse. I guess partially illnesses, partially all of the surgeries, and then I guess I have to account for getter older!!! Even though that is NT one I really want to ADMIT!  Kind of like my memory... if I forget, or can't remember, I blame it on the brain fog...  better than saying maybe I have dementia... You stay warm up there and out of this weather... and of course avoid all of the "no driving fools" that try to drive in ice. No way most Texans from in this part can drive on ice. HAHAH Many of them can't drive on dry pavement, much less wet or icy!!! Speaking about "black ice" on the roads. One year we were coming home from snow skiing in Pagosa Springs, CO... at Wolf Creek Pass (some great memories of snow skiing for me)... we left Santa Fe... and already knew it was a possibility the roads could be bad. We got to the main highway from Santa Fe (I-40) to head to Amarillo state and all of a sudden we felt the van just slip a little... it was a solid sheet of thin ice on the roads and of course you can't see it. Anyway, we slowed down to a crawl. In fact we happened to have borrowed a friends van so we sure as heck did not want to be in a wreck, much less a friend's vehicle.. suddenly here comes an 18 wheeler SIDEWAYS beside us just flying past. He jackknifed it into the medium and then here comes several cars, and they were not expecting it. Each one that went around us were in the ditch when we got up ahead. In fact, we drove on to Amarillo, but it took us something like 12 HOURS to get there. We called 911 and reported the accidents, but the entire way there were cars and 18-wheeler in the ditches. It was nuts. Believe me I felt that the Lord was helping to drive that van for sure.

Friday, November 22, 2013

Technology - In Every Way & the Miraculous Way the Medical World Uses It

Man Kind, Medicine, and Technology...



To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.