More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

Osteoporosis - It Seems to be a misunderstood Disease (Not Just An Elderly Person's Disease)

A typical scene. You are pushing your cart through the market. You round the corner, and there stands  a sweet little elderly lady, humped over, frail, and appears to be so fragile she might break. Your first thought, wow, osteoporosis.

You go a few more isles over, and round the corner, to see a woman, maybe in her late 40's, possibly very early 50's at the most, standing straight, possibly "small-boned", never giving a thought to wow that woman must have "osteoporosis".

Well,  if you guess yes to both, then you are a winner. If you guessed the first one, you were only 50 percent right.

You make walk 4 more isles, pass another elderly lady, a tad bit frail, but holding her own at around 80, and you may wonder, wow, she could also have "brittle bone disease", but no, not at all, her bones  may be quite well for her age.

Osteoporosis, used to be a disease, that I also would have considered an "elderly" illness. One of those that yes, after many years of age on the bones, we become less active, lose muscle mass, then bone mass, and as we get older our bones are more prone to "break".

Well, if you look at my picture, would you think I have not only "osteoporosis" but, in fact mine is considered as "severe" as it gets. My bones are about the age of an 80 year old or more.

The look on my face is one of longing. Longing to be able to pick that guitar up again and carry on with the "lessons" I had been taking, the music I had been playing, on it, as well as my drums and keyboard before this horrid chronic illnesses, such as Lupus, RA. Sjogren's, Raynaud's, Osteoporosis, and others took away my abilities by making my body either too weak in places, too stiff, too swollen, or just from the fatigue of them all, causing me to not be able to do so many of the things I loved to do.

I have a great deal more to talk about as far as osteoporosis, how it affects women, especially when you begin to lose bone mass during the beginnings of menopause, how you can help your own "bones" by some preventative measures, eating properly, not smoking, daily exercise, and an active lifestyle are ways to possibly "defer" from the "bone breaking" disease.

Yet, other things cannot be helped, such as having to take medications such as corticosteroids that reduce bone mass, chronic illnesses such as Lupus, Rheumatoid Arthritis, and many of the other Autoimmune Arthritic Diseases that contribute to this illness.

For more information you can do your own research at :

National Osteoporosis Foundation - http://www.nof.org

National Resource Center for Osteoporosis and Related Bone Diseases - www.niams.nih.gov.bone

International Osteoporosis Foundation - http://www.iofbonehealth.org

And of course always check with your physicians for more information on osteoporosis and any other of the bone related, or autoimmune arthritis diseases.

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 

I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....

Fibromyalgia new theory on Adrenal/ Thyroid glands & certain chemical levels could be a cause...

http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/nov/11/fibromyalgia-indisputable-proof-claims-uk-research/



One of the largest mysteries I believe in the last decade has been(  FM) Fibromyalgia  and Chronic Fatigue Syndrome. There has been a tale to tell on every piece of the wide spectrum of these "illnesses", from it is that women are "nut" cases, it does not exist, to it comes from some type of tests on rats that was supposed to have been answer, & then it was finally and formally called FM, an illness.

Most of us that have an autoimmune arthritic disease (es), have probably had this be a "diagnosis" somewhere during your hunt for the "real and definite answer"... may not be "red" but truth is what we seek.

Then there is the huge dilemma that has been the talk of any and everyone that has FM and/or CFS(they seem to run hand in hand) from the Whittemore - Peterson clinic I believe right at the state lines of Nevada and Colorado. For several decades the talk about how almost every "well" person in town came down with this "yuppie" flu, I believe was one of the many names it was called over the years. Yet, as I think about the "glands" in our bodies and how much they control everything, it would make perfect sense that at least as far as the symptoms, "they fit the bill." Our Adrenal glands, including the pituitary gland, the thyroid gland, the adrenal glands, I think Just lately I found out there are like 400 glands in our bodies. Those two adrenal glands are vital for us to live. They control weight, appetite, have lots to do with hormones and how they are regulated in the body. They control your temperature, and without them would would quickly perish. But due to fatigue, lack of being able to withstand temperature changes,  and many other things that keep our bodies running.

If you are interested in more information as to not only adrenal glands but the endocrine gland system, you maybe quite surprised at what some of them are. Ovaries for one are an "endocrine" gland.

Onto this new article and FM. I've always in my own thoughts (I am NOT a doctor and do not perceive to be) just IMOHO, they are some type of an autoimmune disease.  AFter all think about HOW MANY OF US at one time or the other, or even now have, have had that diagnosis. Then how many of us felt we were given that as a "junk" or "Trash Can" illness, so we would shut up. Then they fill us full of antidepressants and tell us it is "stress" and "anxiety"... we need to just "chill" . As I sometimes say "just another brick in the wall"... now they are trying to convince you it is ALL in your HEAD! And the very sad thing is, there are doctors out there today, that have heard all of the reports, yet they still throw out FM, when they can't seem to find something to "stick". I thought the portion about "lab work" and those quote "normal" ranges that come from the labs frequently. And as I said on a post of FB, I've had it happen twice to me as of lately. I called them on it after I did some research, and U was correct. That "so-called normal" range was NOT normal for me at all. Both cases caused me to have to stop one medication and the other I had to take a new medication for. Had I not pointed those out to the doctors, it may have been looked at later, or possibly not until I had further symptoms. So, it is just another reminder to WATCH OUT FOR YOU! It is a critical thing each of us with these types of chronic illnesses MUST do, to have a better quality of life....

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.

8 Complications From Lupus...

http://health-tools.health.msn.com/lupus-health-center/8-complications-of-lupus?did=t2_mod2

The sad part of this is many of these "complications" are what cause severe illness, and decline of health almost more so than the Autoimmune Illnesses themselves.

Take a look at how many vital organs can be a part of this… the heart, the lungs, the kidneys, the bones, blood vessel (which I believe are considered an "organ")… and more… all of which those things can be not only life altering, but deadly!

I've had complications with osteoporosis (by the way which is considered SEVERE). I've had the skin issues, petechia, severe bruising, the "wolf Mask" the Mylar mask. I have have the horrible looking very purple rash type skin issue on my neck, and it runs up one side behind my ear of my upper neck, and then on the other side it runs up onto my jawbone, and all the way here lately around my mouth!!! I just noticed it around my mouth about a month ago. I already use sunblock, creams to fade out this mess and so forth. I found another Avon product and decided to try it. I'll be damned if I have not already noticed it fading out some. Thank goodness.

Then of course I've had not one but TWO heart attacks. Which may or not be related to the Lupus. I have a tendency to think somehow they are. I have "Lupus migraines". When I have a Lupus flare usually it begins with that damned horrible Lupus migraine… the ONLY thing to relieve it is a large dose of Solu-Medrol, a corticosteroid. Nothing else will touch it! As much pain medication as my internal pain pump delivers, no pain medication does anything. Only the steroid will take it away. It goes to proves it is an "inflammatory" type of headache. I have to wonder year ago (I had my first migraine at 17) if they had given me steroids then when I had the headaches (migraines) if they would have went away. I spent years fighting doctors for medication, ER visits over the years, losing jobs due to having them so badly, I would miss too much work)…. and so forth. I still believe my "autoimmune illnesses" began back then. I believe by the age of 20, I had many of the signs of them. But, at that time, doctors barely even knew what RA or Lupus was. Much less how to treat it. Anyway…. this is a great article… and should give many of us something to contemplate as we shop at our markets, and eat in the fast food, and also regular restaurants also. They also LOAD the salt up in their foods to make them "taste better"...

Rising to the Occasion for My Readers (that are to come)

I realize that not one person has been "invited" or actually became a reader of my blog as of yet. There are many reasons for that, most of which although it has been "up" online for a rather long while, I have not been about physically for the most part of this past couple of years to think about sitting long enough at my computer to be able to write a blog. I may have been able to write some, here, there and yonder, but I know that readers, just like myself, want to read the latest and greatest. As a reader, you want to know the entire "agenda", not just a few pieces here and there. Thus, my goal was to find out what exactly all was wrong with me, (or so I hoped), then do what I needed to do, to get out of pain, as much as possible, and get as well as much as humanly possible. Although, anyone suffering with chronic pain and/or illness(es), realize that trying to get all of the facts together, then correlate those with all of the specialists, tests, medications, and research on the patients part if they really want to know exactly what is happening with their own bodies, that can take an extremely long time. The good news is we have recently made so many leaps and bounds as far as diagnostic tests, blood work, scans, more information and research to help doctors as well as patients understand the workings of these life altering, often life draining, and definitely life challenging illnesses or syndromes. As you have probably gained from this already, my "medical" issues are many. That includes Lupus, RA, plus degenerative joint and disc disease, as well as a couple of other Autoimmune Illnesses, Sjogren's, Raynaud's, along with other health issues including two heart attacks. The first was at the age of 40, yes you read that right, I did type 40 years old. The 2nd one, that probably could have been avoided if things would have been done differently, was actually 10 years later, at the age of 50. I was already in the hospital, and had been seriously ill with another health issue, and had the second heart attack mainly due to the severe amount of stress put on me with the other very serious ill condition I had been in for about 6 weeks prior.
If what knowledge I have now, I would have had back when I was 35, I may have avoided some of the issues with illness I have been dealt. There are times, and I must say fairly often times, that I get very angry about all of the years I spent at doctor's, countless scans, X-rays, blood work, even hospital visits throughout my life, from the time I was about 21 until I was 47, not one physician had ever indicated that all of the joint issues, the chronic pain issues, the severe migraines that plagued my life enough to cause me to be fired from a job I had been on for over 6 years, and I was terminated lying in my bed at home, ill, with a note from the Emergency Room doctor that I could NOT work for 3 days or so. There were many things in my life that either happened, and others that did not happen, or I did not get to participate in due to illness. But, what exactly was happening to me, no one could say for sure.
Being a woman that was having these types of health issues during the 1990's caused me even more grief when it came to the majority of doctors during those years. Even now, women continue to get things said to them like "Oh, you are just stressed", or "I think it is depression", or maybe you should change jobs, get a new husband, move out of town, do anything differently, BECAUSE YOU are the problem. It is just "all in your head". Oddly, men very rarely hear those words, "Oh, it is all in your head!" For the most part, men can walk into a brand new doctors office, with just about any type of symptom known to man, and I would bet on the average, those men are taken very seriously 98% of the time. You just do not hear a "man" or "woman" doctor for that matter, telling a male patient, they are stressed, depressed, and making up how they feel!!! Now, I am not putting down the notion that STRESS is a huge part of our health problems especially in the United States. With the "large picture" to "do more, be more, give more, work more, make more, have more.... more, more, more... both men and women, as well as many of our kids are very stressed out! The rapidly fast paced society we live in is enough to make even the most passive person be ready to pull their hair out by the end of some of our busy days, that seem to be 58 hours long, and still not enough time to do it all. So, both depression and anxiety are two health issues that do need to be taken very seriously. BUT, those two illnesses cannot be used as "scapegoats" for laziness on our health care professionals part to do the tests that are needed, no MORE but NO LESS! A 5 minute conversation, that is usually one sided on the doctors part, does not usually mean a very accurate diagnosis for a chronic long term life altering disease. These are not easy to diagnose, and they all have symptoms that can be similar to other illnesses. But, with the right doctor, that truly hears and listens to his patients, that does take time to make the right decisions as far as blood work, any scans or X-rays that may need to be done, or even a biopsy or certain type of surgery maybe needed in ordered to find out the entire issue. It also may take several physicians that specialize in different fields to discover, determine, decide, and come to conclusions together as to what is going on with a patient, especially when it comes to these chronic illnesses, that are often rare, and for the most part, not a great deal known about them... It also takes a patient that is willing to get right into the middle of the whole thing, look up all of the information they can, online, in books, at the library, through magazine articles, and then also willing to ask all of the questions that need to in order to get their own answers to suit them. For me, more often than not, no matter what is going on with me, let's just say as of lately, I began about 7 months ago having sudden "double vision". At first I did not give it much thought. I do not sleep very well with all of my health problems, so I thought it could be from lack of sleep. I went along about a month, and it was not resolving itself, so I did some of my own research as to the possibilities, finding out it could be a number of things. So, I went to my regular opthamologist, who does a vision check on me annually due to the Plaquenil I take for the Lupus. The medication can cause retinal detachment, and even though rarely, I still must have an annual check to make sure all is well on that side. I realized several years back my vision was beginning to get much worse, as far as reading and close up vision, but with my age getting around 50, that is not all that unusual. I had a thorough exam, and was put in a different type of glasses with "prisms" in them. All of their tests did not reveal anything wrong, but the prisms are used to help with those that have double vision issues. It took me literally weeks to get used to those glasses! I would get sick to my stomach if I went it to a large store, with lots of open space, before I got used to them. They just caused everything to be thrown off, from how it looked when I looked at the ground, bent over, read, or even watched television. It was totally crazy, but I did get the glasses, and they did help me to see better. At that time, my regular eye specialist wanted to refer me to yet another specialist, and in fact one I had never heard of up until now. They wanted me to see a "Neuro-Opthamalogist". I knew when I heard that title, first of all it was a highly specialized field. Secondly I just knew the possibility of finding one close that also took my insurance was going to be like pulling teeth! So, at that time, I was already facing some type of surgery (we just did not know exactly what kind yet) so I put the "double vision" in the back of my mind, wore the new glasses, then went on to have a 4 level cervical spinal disc replacement and fusion, which was done this past June. I had been living in a living hell with severe shoulder blade pain, pain radiating from the top of my arm, down and around to my thumb. I was not able to have much use of my right hand, and of course that is my dominant one, and it made life miserable. I had already undergone a had already had a complete "reverse shoulder replacement" in June of 2011, that was supposed to correct all of the weakness, pain, and give me back the use of my right arm. Yet, I was not able to even lift my right arm enough to put deodorant on under it, or shave under it. There was no way I could reach behind my back.The worst was when I had to stop the rehab therapy I had been doing because the pain was just too bad.  Then it was another several months of trying to figure out what was causing the right shoulder blade pain, the a pain running down my arm to my thumb, the weakness, and basically giving me an arm that was totally useless to anyone. Once again, I was dealing with a doctor, (and folks this is 2012) that absolutely despises any of his patients trying to "self educate" themselves on what is happening with their own bodies. He just hated the fact I went online, knew a great deal about that special type of shoulder replacement, he hated the fact that I knew about anything.Then when the shoulder implant did NOT in fact "fix" of all my shoulder pain. After 6 months of doing very well after that surgery, suddenly I began to have pain again down into my shoulder blade. It was a severe "burning sensation" that later ran down my right outer arm down and around to my inner wrist and into my thumb. Before that the majority of the shoulder pain and weakness had improved dramatically, and it had been coming along very well with me rehabing it at home on my own. One day 6 months after the surgery, I had went to put gas in my Mom's car (yes she cannot put gas in her own car - never learned how to) I went to twist the cap on to make sure it was locked, and I felt something like a "snap" in my right arm, in between my elbow and shoulder. It almost gave the impressions of a rubber band when you stretch it and let go. I even almost "heard" the noise. At first, of course I was very upset that I had done something to that surgical implant, like pull it away from the bone etc. But, at that time the pain I felt was more like a tight squeezing feeling just in my arm where that "pop" had taken place. I was definitely concerned about it, but I knew I was going back soon for another check up on it, so I thought I would talk to my doctor about it then. Well, within 2 days, my shoulder began to hurt. All of that burning in the blade itself was there, but my entire arm felt sore, it hurt almost like "bone pain" in the shoulder, and that sensation of burning ran down to my thumb. We went through X-rays that showed that everything was in place as it should be, as far as the shoulder implant and hardware in there appeared to be normal. Due to my "pain pump" (which I will talk about in another post) I am not allowed to have any MRI's... ever... thus I went and had a CT scan along with a myelogram of my neck. I have had neck issues for the majority of my life, due to a 4 wheeler accident that I had when I was about 26. But, in the past 4 years or so I have had a great deal of degeneration of several of my discs. The scan did show some of the damage, but the doctor was still not really satisfied with just those scans and X-rays. So, I went through a nerve conduction study (NCS) and an electromyogram (EMG) which revealed that there was significant nerve damage. Yet, even with that evidence and what the CT had shown, it still was not exactly apparent if my CERVICAL SPINE was the cause of my latest shoulder issues. I knew I had neck problems. I had 2 other MIR's from 2006 and 2007 that showed the degeneration of several discs at C 3,4,5... then in 2007 it was those along with C-6 that also was in with the entire bunch. Even though there had been no bone spurs and so forth showing, the evidence of the specifics of symptoms and pain I had was sufficient enough for my Orthopedic Surgeon to feel like the problem was definitely nerve impingement coming from the herniations from C3 through C7 actually, with evidence of two discs entirely needing to be "replaced" (more "foreign" parts to add to in my body), and probably fusion of all 4 of them together. So, after feeling just a year before like I was "through" with surgeries for hopefully a long while, I was not only facing yet another major surgery, but one I had NOT wanted to ever even have to think about, and that was any type of spinal surgery. We have so many horror stories, and all of us have heard them about "failed back surgery", (they even have a diagnosis of "failed back surgery", just like a diagnosis of arthritis, or a torn knee cartilage), that I had always said I would NEVER no matter WHAT EVER have any type of surgery on my neck or lower back. Even though I do know several people that have had lumbar or cervical surgery and came out just fine, we usually have many more just the opposite. From just talking to someone in the local market to what we hear on television, and all of the massive amounts of information on the internet, we are inudated with more negative than positive results. So, this one was extremely difficult for me. I argued with myself over the subject for a couple of weeks. Yet, when I weighed all of the facts together, which #1 was I could no longer live with the pain, #2 the spine issues were only going to get worse, never better. Without going through with the procedure now, would mean I still would face it shortly. So, the option of putting it off, was kind of took off the table. Thank goodness I did listen to my doctor, to Jim, and moreover to myself. Now I am happy that I made the decision to go ahead and have the cervical disc replacement and fusion done, or honestly I would not be here typing this out. I got to the point I was not able to stand the pain in my shoulder blade as I tried to type. I would not be here 5 minutes even just checking email, and that intense burning began. then it may last hours or even a day or more, when it got started. Everything seemed to aggravate it, whether I just had the arm by my side walking or I was trying to use it to clean or stir something in the kitchen. so, even though it was a great deal to go through, not being able to drive for 6 weeks, well actually 8 for me due to having the "soft" bone where the screws were that hold the "hardware" in my cervical spine. I also have osteoporosis, which is extremely bad, due to y "genetic" background for the first part, and for the second due to having to be on Prednisone, even a small dose, has also caused the issues of this illness to be even worse. I was totally shocked when I had a bone density test about 3 years ago. Never did it dawn on me I would have any issues with that kind of problem. But the test came back actually "severe" as it can. So, I went on medication for it right away that I take weekly in a pill form. "Fosamax" is the brand name for the medication. they have just came up with a generic brand, which saves my insurance and myself some money for sure. But, it does not even really "repair" the brittle bones, but it does make some of it harder so that a fall, or something like that may save me from a horrible break in my pelvis, hip, wrist etc, But, of course NOT falling at all is the best. Yet, with all of the issues from RA to Lupus, to just have all of the implants can cause you to be more apt to taking a fall without being extremely careful. Anyway, I endured the 8 weeks of that hard collar, not being able to drive or bend over, and other things that I was so used to doing I could not do. One thing that was a positive light from the surgery well before I began to see results from it, was the fact I REALLY needed to WALK and QUIT SMOKING. I had already basically quit smoking anyway. I am what they call a "weekend smoker". I am able to take a puff or two a day, and nit have to smoke anymore than that. the walking, well, I already have been an avid exerciser, and ride my inside exercise bike for 45 minutes to an hour daily, without miss for the most part. But, walking was something highly suggested on all of the sites that talked about healing from the cervical surgery. Since I could not drive to my regular walking park,  one morning I started walking up and down our long driveway. I am fortunate enough that we do have a fairly long driveway, that with about 35 to 45 minutes gives me quite a workout. I started doing that just after the surgery and have never stopped. I religiously walk, no matter weather, unless it is extremely cold or rainy, I walk, which is in addition to continuing the daily bike ride also. So, I get my exercise in daily, which I am quite proud of. I look forward to the sounds of "Matchbox 20" in my ear, and that "trip to anywhere" I want to go for a little while. I maybe silent and absorbed into thoughts or I could be singing, or more than that talking to myself about one think or the other going on at that time. I realize often that even though I feel so weak, and fearful, I am forever more strong especially mentally and emotionally with every medical thing that comes into my life that I have to endure...I close this one and a new subject comes soon... I will begin to publish "daily" pieces even though I may not finish them at that moment also... but complete them in a day and then begin another. I want to keep this interesting for YOU the reader, as well as try to enlighten you on the aspects of life with a Chronic Illness.