Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

Sunday, March 30, 2014

Want to Update everyone here.... things are not very well right now

I am going to just "post" a few of my Facebook posts so everyone will know WHY I have not said much here about the Arthritis Summit....

I will say it was AWESOME! I would go back again in a heart beat! it was one of the best experiences of my life. When I get some pictures out of the camera etc. I will definitely tell you more about all of it.


But, just about the time the Summit finished up, my family suffered HORRIBLE, almost NIGHTMARE NEWS!!! My husband Jim, has only a "Step-Mom" other than me in his family. He had not seen her in over 12 years and I had not met her even though we have been married almost 10 years. So, Jim is originally from Washington DC. This was a perfect time for him to meet me after the Summit on Wednesday, we could stay with his Mom, and get to visit with her. And he could show me the "rest" of DC!!! Well, she was coming to pick me up, His plane was not due in until after 5:00pm due to me thinking we may not get back from the House of Representatives until 5pm or so from the schedule. But, we were back by noon. So, she was going to pick up me, and take me to her home, and he was going to come into Falls Church via the Train or whatever... anyway he would be very close once he got his luggage & came to that station. Well, she misunderstood and went to the "other" Hilton in DC, thinking I was there, rather than at the Capitol Hilton. So, she was late. I was outside enjoying the sun, since the day before we were in sleet and HUGE snow flakes, and COLD all day long. The wind was still cold, but the sun kind of warmed it up a bit. Anyway, due to the buses, etc. my cell phone was ringing, but I could not hear or feel it. I happened to go back in and see if I had missed her somehow and then I saw my daughter had called like 7 times!!! I knew SOMETHING was very wrong....So, I find out that my husband Jim, while on his way in Dallas to the airport to come to DC, was in an extremely bad car accident. As best as we know at the moment, an 18 wheeler rear ended him, and then shoved him up under a car or truck in front of him. We also were told the car may have spun him into other traffic. Needless to say, he is in one heck of a mess. Just about every RIB on BOTH sides are broken. They did massive 8 LEVEL back surgery Thursday that took 7 hours... from C-7 DOWN to T-7.... He has a "shattered" shoulder, a broken leg, a tiny "tear" on the outside of his main Aorta, a mild concussion, and he cannot "feel" himself move his legs right now. They first stablized his spine, then are going onto work on other things. I have some updates on my Facebook page. and I will just put a link to it here... that way if you want to know changes, and how he is doing you can....

I am also in not great shape. I fell that early morning he had the accident and cut through my bottom lip, bruised the heck out of my chin, skinned up both artificial knees ... I am barely able to walk, I am SO SORE from all of it and my hips are just hurting so badly... I DO have a Rituxan infusion FINALLY  SCHEDULED for Wednesday... but I have an appointment with the dentist. I have cracked off several teeth due to this Sjogren's and I have one that really needs to be pulled... it is hurting badly... I also think I maybe coming down with bronchitis... so I may have to make a trip to the urgent care center today, so it does not mess me up worse with everything. I cannot help him, if I am sick... thus I have to try and get the care I need also.

Here is the "Facebook" URL:

https://www.facebook.com/ifaarhia 


I am updating that page above so everyone can know what is going on. I realized it is just easier to do all of it in one spot and that way everyone knows the same information.... I appreciate everything that so far you are all saying... and wishing for us... Please keep Jim and I, and my family, his Mom and so forth in your thoughts and prayers. This is a very BAD situation, and sounds like as I hope IF things ar as they say, someone, (not m husband) was very in the wrong... but as you will read, I cannot even get the police report for another about 7 days or so... see the page above for updates and as soon as I have things from the Arthritis Summit I will post them :):) What an incredible experience! I am definitely going through to become an Ambassador.. and all they did to help me get back to Texas after Jim was hurt so badly was just totally amazing... along with another gentleman that helped me so much. He got hold of the proper people, helped me get on the plane, and back to Dallas very quickly... I will never be able to thank Chris Nieto and Laura Keival (Arthritis Foundation)..... along with Serena, Kerri, Pam .... everyone was totally amazing!!!!!

Thursday, February 13, 2014

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?



Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.


Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Wednesday, January 8, 2014

Another Huge JUMP ahead for IFAA thanks to Janssen Global!




And we're off!

The International Foundation for Autoimmune Arthritis received a large grant from Janssen Global, Inc. to begin a study that, when finished, will combat the delay in diagnosis that is often associated with these diseases. Current AVERAGE time for diagnosis is 1-3 PLUS years, but the "plus years" is often 5, 7, even 10 or more. Given 50% of all patients can experience complete disability 10 years after ONSET if not treated properly, this means if a delay in diagnosis is 3 years the patient is almost 1/3 of the way to disability before ever starting treatment...and any damage accrued in that time is PERMANENT and IRREVERSIBLE, regardless if clinical remission can be achieved.

We will begin developing a survey that will analyze the early symptoms- as recorded by patients- then take the findings and cross-reference what is currently used as a model for detection, referral, and diagnosis. With these results we will then be able develop wellness education for primary care physicians and other "first responders", as well as rheumatologists, that can broaden the understanding of early symptoms, thus promoting an accelerated process towards diagnosis. In addition, we will be able to review the crossover in symptoms that occur in all Autoimmune Arthritis diseases, regardless of the outcome of final diagnosis, which should narrow the mystery of what it could be and push towards more firm treatment plans associated with the 'undifferentiated' genre.

We'll be coming for YOU to participate in this two part study, first analyzing patients in the US and the second phase will expand to a global level. YOU can be part of the change, matter-in-fact, we insist...because we are all about making the patient first in research!

Survey will be ready for distribution in March 2013. Results will be revealed LIVE during World Autoimmune Arthritis Day in May.

Thank you also to the Spondylitis Association of America & the @International Stills Disease Foundation for already signing on to help us recruit patients and distribute the survey. "Together we will move mountains, bulldozers are so overrated." -Tiffany Westrich, CEO of IFAA

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.

Tuesday, November 19, 2013

(Edited AAI & Decisions of Life) "Murphy's Law... or more like Rhia tumbles once again down the hill..

Dammit!!! I am so Miffed and Ticked off! Something happened and an electrical transformer blew and shut everyone's electricity off!!!!So, when that happened EVEN with a surge protector! So, I am trying to use an very OLD laptop that sucks!!! We are in the process of ordering me a new one, so I am stuck with this for now. I wanted to let everyone know. PLEASE BARE/BEAR or (maybe I sound like a "grouchy old bear)...  with ME a couple of days. I have some of my files on this one, but I have lots on my external hard drive that this old lap top won't work with!!!!It takes what seems like hours to even post here!!!! I am just feeling like hell just opened up and swallowed me today!! Everything that could happen I think happened, I dropped all of some of my pills in the floor and on the cabinet. I went to the market, and dropped a few of my plastics (card) in the floor. You name it, it has happened. Then as I said all of a sudden the lights were gone, and I heard the "bang". And I was the one that called it in. We had no lights for about an hour. lights came in, everything great EXCEPT ME!!! I am not sure I will make another blog post until I get the new one. And I will post this there so anyone coming to my blog will understand. I sat in the floor and literally cried my yes out under my desk, I was SO UPSET!!! This is the LAST thing we needed, We are already strapped for the green stuff, and now I face this. And this is no "loaf of bread" to buy...


UPDATE to the DAY from Hades : 


I did get the new IMac ordered earlier this week. :) I also did get to finance it for UP TO 6 months and no interest charges. That is awesome! I hope to pay it off the first of January, but at least I have an option and do not have to fork over money to them for interest. I got the message this morning that it is on it's way via Fed Ex. It's coming from California. They say "estimated" to arrive by next Tuesday! Let's freaking hope it makes better times than that since Fed Ex has it now. I pray for tomorrow... LOL.. but I have a feeling it will not be delivered tomorrow even if it does arrive in Dallas by tonight or early morning. Although if I would have not stood around trying to decide which one I wanted it may have arrived today. Yes, I know, patience is a virtue... and all things that are good, are worth waiting for... and the days go by quickly, it is a weekend before a holiday, relax... you can do a few things on this "dinosaur" of a laptop. Actually I could do most of my stuff on my I-Pad, which is faster. Yet, the I-Pads' keyboard and myself do not see eye to eye. I have a difficult time doing a huge amount of keying in on it. I do recall that I could use  my wireless (and by the way solar powered) keyboard with it. Although by the time I go through all of that, my new IMac will arrive and it will be a mute point. Besides I have PLENTY I can FIND to do at home. From moving Winter clothes to the front of my "walk-in" (might as well say go in inside ways if your lucky) closet (we have to "invent" closets in this house when we bought it, there were NONE) and putting the Summer stuff at the back, if possible. PLus I can look around and see that as MUCH as I love "knick-knacks" , keepsakes from trips, and just in general vases, glassware and so forth that have some kind of sentimental value to them for me, I have TOO MUCH STUFF now! Our home is very small. And believe me, I've had to get in the "extreme" parts of decorating when we moved in. LOL, and in some ways not just "extreme" more like miraculous ways to make space for everything. I still love it, don't get me wrong, but with all of the problems with my hands these days not wanting to cooperate due to the RA, and the advanced damage in my thumbs especially, I just can't keep all of it washed frequently and/or dusted, and I am beginning to look around, feeling like I "pack rat" as we call those who save everything. 
I know my husband Jim, would say that my type of "rat packing" is more or less a great thing of sorts.  If I save it, then i have some way in the back of my mind I will re-use it. If not then it goes straight to the recycle bin. If it can't be recycled in this silly small town, then I take it either where it can, or give it to a place here in town called "Souls Harbor"... sounds like the name of a place to be "harbored" from being out in the cold or something! LOL! Actually that name has been with it ever since it opened I guess. I recall as a child my parents taking things there. Everyone in town says first thing if you are talking about getting rid of something, take it to Souls Harbor. Actually as crazy as it may sound... many things for instance like my "precious" old computer chairs, old vacuum cleaner, along with several items that either "need" a slight fix, or we decide we don't need that are larger items such as that, we put them in the front lawn out by the street, with a "free" sign. By the time you go inside and come back out in less than an hour it will all be gone!   There are a couple of men that collect scrap metal, old washers, dryers, and furniture... and take it where it can be recycled. As far as anything else, these new light bulbs, plastic bags (if I even have any, I use only reusable ones for the most part), in cartridges, old glasses and anything that can be recycled that I know about, I do so. 

Needless to say, part of this post is definitely about autoimmune illnesses and how they effect our daily lives. Things such as clothes now days with the closet so small, must be arranged as much as possible so I can reach them, or even get to them. I have two racks on one side, and the top one is almost impossible for me to reach up to now, thus my "current" season clothing is put on the lower racks so I can reach them. About the dusting all of "memorabilia" I have. That is another nightmare now days. I was able to do so fairly frequently. Now I do well to get the floor vacuumed, dusting around just where I need to, baking or cooking, doing laundry, and just the daily chores we have in life, much less making more work for myself by having to clean and dust intricate items, or just finding a spot t store them in.  It is about time for me to have a "throw out" party. Everything that I feel is in the way, is not in 6 to 9 months, has been not read (although I find it very hard to get rid of any books)... but magazines go to our local library, good clothing either to our local place that take clothes to help others, or again our Souls Harbor takes good used clothing in and sells it for pennies. 

I know many of you are thinking this post rings a bell with you. Women especially tend to be more sentimental about items such as that. We want to save them for a good memory, or to hand down to our kids, or thinking we just can't throw out something that could be useful for something someday! Then you are ran over by a Mack Truck of Autoimmune Arthritic illness/(es) ; only to discover we may have the "mindset" to keep those things, but our bodies have a totally different opinion!

        

Tuesday, November 5, 2013

The Mysterious "Lump" in my lower left Abdomen…

I have probably mentioned in posting that I've been dealing with a "lump" on the lower portion of my left abdomen. It was there about 2 months, and it seemed to be a bit larger and kind of "puffy". No pain, and I kind of blew it off at the time. But, not only did it remain, it was definitely getting larger. So, I showed my husband, and make an appointment, with PCP. Well, I saw one of his PA's. She did not seem like she could even find it at all. Even after I told her it "goes away" when I lie down, and it shows when I stand up… well she sent me for a sonogram in that area. The tech that morning I told him about the standing up, and that it I lie down, it may be difficult to find or even see. He aid me down anyway, mashed the hell out of my lower abdomen, and made me sore the next day. Yet they found "nothing"… well no way, it had to be SOMETHING!!! So, I went to my new Gynecologist last week. I asked her about it. She was kind of puzzled but she tried to see if there seemed to be anything that she may feel causing it. She did mention I had a lump, but she bought it could be an ovary that they left when I had the hysterectomy . Well, my understand was back then, they took the LEFT one OUT, and allowed the RIGHT one to remain… but that is 20 years ago and aback at that time I was not keeping my own personal medical records like I do now, thus I can't find anyone that can even remotely tell me where they are and how I would get that operative report. Anyway, still not being satisfied, I asked my heart doctor yesterday. She said she would definitely getting either back to my PCP or for another opinion. So, I called my PCP office, and I got in this morning… and as below… I was RIGHT!!! I said all along for one something is wrong and for number 2, I thought it was a hernia! Anyway, I am exhausted and my back is killing me. So, I will post more on this tomorrow a.m. :)



But, that is for ALL OF US! certainly not just myself… of course as I said partially but at least I am NOT CRAZY! A

after seeing 3 doctors that said they didn't have a clue about this lump on my left lower abdomen, I finally am RIGHT!!! There is something there. I have a damned hernia. Well, I am relieved to find out I'm not insane. But, I am not thrilled that surgery is the only thing to repair this. And get theism I have one of the right side starting. I told my doctor I though I felt a tiny one in the same place in the right, and she told me yes I have a small one that also should be fixed at the same time… so now I am waiting for a call from the surgeon's office, to set up an appt with him for consultation. Damned does it ever get BETTER???!!!!

Friday, August 21, 2009

A Quack Doctor, I still have no answers for my horrible health siutation

This is a letter I wrote to one of the places I am a member of in regards to health care reform. I have been so totally torn up about what happened to me this past Wednesday when I went to a referred Rheumatologist. Not only was I treated like crap, he basically told me I was either causing the horrible bruising (petechiea & purpura), or he insinuated Jim was causing it. Here is the letter and you will see why I am totally wiped, weary, and ready to just say to hell with it all!

The people of this nation have made it quiet clear, we speak as a majority to vote this health care reform bill into action. It is more than time that Congress puts the bipartisan back stabbing, acting like toddlers mess away, and get down to the brass tacks. Our present health care system is non-existent, old and antiquated, feeds on the insurance companies thriving, while the patients are being bled dry by the sky rocketing costs of medications, doctors visits, tests, and health insurance. NOW is the time for that to change! No MORE "pre-existing" bull, no more running not needed tests such as blood work, MRI's, CT's, and the entire gamut of what doctors do to get paid properly, as the insurance company slaughters the doctors by not paying what they truly owe them. I am totally shocked when I get one of my bills from a doctor. I am an established patient, not a new one, I see the doctor for a quick follow up, he is in there with me no longer than 3 to 5 minutes, yet the bill is over 250.00! And gosh knows from the nightmare of yesterday how much of a charge there will be by a total jerk of a physician I went to. I go to a new rheumatologist, he "blew off" the very reason I went to see him for. After I have had an entire battery of every blood test in the world by my hematologist in the last 3 weeks, this so called want to be a doctor, rheumatologist wanted to RUN THOSE TESTS AGAIN!! Why??? Well for one thing, the lab was OWNED BY THE RHEUMATOLOGISTS! Makes send huh... they also get the lab payments... so they can run up thousands of dollars worth of blood work that patients have already had done, so they can collect MORE MONEY from the consumers and our insurance companies. I would bet when I "see" the bill, he charges 500.00 plus in his fee, when HE NEVER ONCE TOUCHED ME, OR EXAMINED ME IN ANY FORM OR FASHION!! He has his "assistant" briefly ask a few questions, half way look at me, and I had provided A LARGE AMOUNT of brand new blood test results that I gave her... along with the reasons I was there. She left, was gone about 5 minutes, brought the doctor in, he said basically my other doctors were "idiots", that nothing was wrong EVEN THOUGH I AM COVERED HEAD TO TOE WITH EXTREMELY SEVERE BRUISING. I am constantly bleeding under my skin, and it has been going on now for almost a year!!! Yet this idiot said "he was NOT concerned about the bruising" and insinuated there was NOTHING to worry over, they are just “garden variety” bruises is what he told me...This is after 4 other doctors, along with lab technicians, and nurses, that this type of petechiae and purpura was NOT regular bruising. The other physicians seem to think it could be a type of vasculitis, due to the autoimmune illnesses that I have, which as Lupus, Sjogren’s and Raynaud’s. Everyone that knows me and sees me including my doctors are EXTREMELY CONCERNED about my health situation, and honestly every one including the nurses, lab technicians, and my doctors told me they are praying for me. That tells you this what ever it is that I am totally covered with is something potentially extremely serious. Now I am left at a cross roads once again, not even knowing where to turn, especially since my PCP and the hematologist told me, if I were to fall, or be in an accident, I could bleed to death internally!!! That if I fall, I go straight to the ER, or if I have any symptoms of internal bleeding. My story is a nightmare, just like so many. The doctors, insurance companies, and medical personnel care about MONEY! Not all of them, but many of us encounter this type of greed, not caring, non sympathetic physician, that wants to rerun tests, run up our bills, and make a fortune while like myself, I may NOT live if I don't find out what is causing this horrendous petechiae and purpura (special bruising other than a normal bruising caused by an autoimmune disorder. My own body and antibodies are attacking my blood veins, arteries and capillaries and basically destroying them)...

I am depressed, mad, hurt, shocked and most of all myself and my family and spouse are terrified I could bleed to death.


So something needs to be done... AND DONE NOW TO FIX THIS MESS we call Health care!



Tuesday, April 28, 2009

New Strain of Swine Flu concern here in TX/Around the globe

It sounds like we are really in a spot of the unknown when it comes to this new strain of swine flu. It looks like it began in Mexico, but now has spread in TX, CA, NY, and around the globe to other foreign nations. I realize the CDC does not want panic, but they have raised the level to "4", which 6 is the highest alert as far as a pandemic.

I know I am certainly concerned. I live not far from Dallas, and there are many people living here that commute and work in Dallas. So, between people that have relatives in Mexico and have visited... even our neighbors were there not too long ago, to those who could carry it here from their work place or from shopping in the Dallas area... it does worry me. Due to the fact that it is actually killing "healthy" people, and those in the age range of about from 25 to 45... what does that mean for the elderly, the small children, and those like myself with compromised immune systems? Since I have several autoimmune illnesses, including Lupus, Sjogren's and Mixed Connective Tissue disorder... anyone with a less than healthy immune situation certainly I would think could be at higher risk of contracting this new strain, as well as having a more difficult time trying to get over it.

Lots of links and updated information coming in... take care... try and stay out of public places, away from those that are coughing and sneezing... wash hands frequently, try and not put your hands around your eyes, mouth and nose, especially when out and about in town... if symptoms arise that you feel could be flu in nature, contact your doctor or ER immediately, let them know they symptoms, so they can be more prepared to be extra cautious when someone who is possibly infected comes into the office or hospital.

http://www.cnn.com/2009/HEALTH/04/28/swine.flu/index.html?eref=rss_topstories


http://news.yahoo.com/s/ap/20090428/ap_on_he_me/us_med_swine_flu_us_cases


http://www.dallasnews.com/sharedcontent/dws/news/city/dallas/stories/042809dnmetflulocal.3fde1ea.html


Take care and be extra cautious....

Saturday, April 18, 2009

These incidences are beginning to be Epidemic it seems.

This issue of contaminated medical equipment and reusing equipment that is supposed to be thrown completely away has become an all out epidemic lately. From the latest, which is this one in South Dakota, which potentially put over 5,000 people in possible jeopardy of contracting HIV, Hepatitis and any other blood borne diseases, to VA hospitals, clinics in Vegas, just to name a few. Our nation is NOT some "3rd world" country, that is so poor that hospitals and clinics need to save instruments. Further more, even if it is a piece that is re-used, what ever happened to complete and thorough sanitation and the autoclave of them?

After personally undergoing more than 10 surgeries and procedures over the past two years, this terrifies me, and I am sure it terrifies others also. We go in with confidence that the hospital or clinic we visit, along with our doctors, nurses, and other staff that care for us should be using sterilized EVERYTHING! What are we going to do? Go into the operating room before surgery and check to see if all of the equipment is either disposable or clean? We have enough worry on our plates anytime we go in for a procedure or visit the doctor when some type of invasive tests will go on, about the risks, and our health, without having to add more stress on patients and their families that equipment is contaminated. Between this, and all of the hundreds of food, toys, animal food, and other things that continue to pile up with diseases, or possibly deadly additives, and now this every day announcement of yet another large group of people exposed to blood borne diseases, it makes me wonder what the heck the FDA is doing? What is going on with the board that certifies these health care places? I also in the back of my mind wonder if all of this is not just a coincidence, or is it possibly some type of "attack" on us as citizens of the US? I realize that may sound far fetched, but with these happenings being almost epidemic in proportion, I really wonder about a link to terrorism on our own soil again.

Here is a link to the latest :

http://www.cnn.com/2009/HEALTH/04/17/south.dakota.urology.infection/index.html?eref=rss_health