Friday, November 8, 2013

A Letter From the Founder if IFAA - Tiffany Westrich-Robertson

She has developed shingles due to this outstanding trip! You will understand as you read her letter below!!!

(Tiffany) As CEO of IFAA, and autoimmune arthritis patient, I understand these diseases and the toll they can take on the body. If you view a photo posted of me yesterday morning, right on this page, I'm smiling, happy, and looking "normal". I'm speaking with the Director of NIAMS- the arthritis division of the National Institutes of Health. A highlight, an honor, a moment I will always cherish not only due to the outstanding work performed by Dr. Katz, but because I'm humbled as a patient to have shaken the hand of a man who works day and night to better my life and those in our community.

Now the reality of how much I truly know about these diseases- how much I understand. I am you, you are me. I flew from Los Angeles to D.C. on Tuesday, prepared for the trip and potential flare for days prior, working from the sofa and resting as much as possible. I knew Wednesday would be a 13 hour day, filled with back to back meetings, in a different time zone, jetlagged and sore from travel. As the day winded down the fatigue was so powerful I sat alone in the restaurant barely able to put fork to mouth, yet still the blur of the days triumphs keep an internal smile inside me that kept til morning.

I took a long bath before bed, preparing for the long flight home in the morning, hoping my body wouldn't freeze in response to the extreme use the day prior. I anticipated a fever, fatigue, and general flu-like feelings, so I planned my outfit for travel accordingly, buttonless/zip-free pants with a pull over top and walking shoes that could be easily, yet discreetly, slipped off under the plane seat in front of me. I then traveled across country home, just 2 days after the original departure, and basked in the outstanding memories of the science heroes I had the honor to meet. I smiled at the thoughts of the CEO's and other advocates I sat next to, shared conversations with, and will continue to walk side by side together in our fight for the community. Then as I made my way back to my home and relaxed on the sofa, I realized all the preparation I planned to ensure a minimum flare was simply not enough. Within hours of landing, here I sit- or barely sit- with an outbreak of shingles that are placed such it makes it difficult to sit or lay comfortably. They will certainly trigger a full flare, joints-tissues-and flu like symptoms, and I may be laid up for a bit. But I want you to know it was all worth it. Every moment of the fatigue, every minute of pre-travel prep, and now every moment of discomfort. It's worth it, because I met scientists who listened, I talked with leaders who want to unite for change, and I was invited to sit side by side the scientists and doctors at the NIH to become the 2nd patient ever to help NIAMS review their grant applications in 2014


I could have posted more pics of me, smiling and cheering for this step towards victory. But as a patient myself, and the leader of this nonprofit, I choose to tell the truth. To let the world know that every single second of my trip was worth the journey. But that journey comes with a price. We may look 'normal' on the outside but when we push, even if we plan accordingly, our bodies' will respond with a vengeance.

I'm not posting this to complain or for sympathy. I am not looking for 'fans' or for praise. I am posting this to show that I am a real patient with real consequences for pushing my limits and doing my job. But this is the role I chose- the role of an advocate. I, and the rest of those with IFAA who also are patients, will continue to sacrifice as needed to ensure our community is heard and changes to research are made.

Did I get shingles and flare due to the trip? Yes. But I shook the hand of the director of NIAMS and sat next to some of the most amazing community heroes...and I'll do it again and again.

IFAA is the first and only nonprofit that focuses solely on clustering together these few diseases in order to solve the equation:
Early Detection=Early Referral=Early Diagnosis=Early Treatment=Earlier Possibility for Remission

We are changing the world the best we can. Every limping, flaring, and blistering step at a time.

Speaking of Prednisone - Autoimmune Arthritis… A "Necessary Evil"

Here is the site - "Creaky Joints"  and a Topic we all talk about quite often -- Corticosterioids!

Just about anyone  with any of these Autoimmune Arthritic Illnesses - Lupus, Rheumatoid Arthritis, Sjogrens, MCTD, UCTD just to name a few… has had the "pleasure" AND the "Pain" of these types of "steroids"… they are incredible & horrid also… read on….

http://www.creakyjoints.org/content/cj-hot-topic-prednisone

Wednesday, November 6, 2013

International Foundation for Autoimmune Arthritis Illnesses doing to Make AAI - diagnosed, treated, & hopefully cured!




I guess you can say I am a bit "prejudged" over this incredible lady! Tiffany Westrich  - and here is who she is with…


FAA CEO, Tiffany Westrich talking with Dr. Stephen Katz, Director of NIAMS at the National Institutes of Health (NIH). He was very thrilled there is now an organization representing the Autoimmune Arthritis Diseases!

PLasee take time to see what all this incredible Organization has done and is doing to treat, diagnose more quickly, give an understanding to all about the autoimmune arthritic diseases, find more researchers so we can hopefully put them into permanent remission!



URL:

I MUST Tell OFF On Myself! Talk About Some SERIOUS BRAIN FOG!! (Comical for sure)

RA, Lupus and Brain Fog!



Even though I am not thrilled at telling off on myself, I have to tell this one. The MAIN reason is because every single one of you, if you have any of the Autoimmune Illnesses have had DAYS, or maybe more that SERIOUSLY you wonder if you are losing your mind.
Well, yesterday was one for me. I began with my mind seeming quite foggy early yesterday morning. Just reading a few news articles, and feeling like I was not quite "getting the message", to my typing being just OFF in all respects. I was having issues like not remembering how to spell a simple word, and as I said.. I must tell this one, ladies will appreciate this…

Of course I was headed to the doctor at 11:00 yesterday morning.  Well, I went to lay out what I was to wear, brushed my teeth, and decided this time to "dress first" then do my makeup (like many of you probably I for the most part put my makeup on first in my robe, then put my clothes on). I was dressing and I thought something did not "feel" quite right, but I could not really tell what was wrong exactly, other than the "tights" or whatever you want to call them, have a seam that needs to be inside the leg portion comes all the way up like that, then goes down the other leg in the same place. With these tights, it's like putting on hose, you have to put them on correctly or they just feel off.

Anyway, I went onto the doctors office. I was a bit early, so I went in and decided to use the restroom before I went in. So, there was a man standing in the lobby, and I thought when I had first walked in and looked at the women's door, I saw is closing. So, I thought someone was in there. Well, I waited and waited; not wanting to be rude, I did not want to turn the knob, or knock on the door until I waited a bit longer. Well, he seen I must have been waiting, so he pointed to the door, and told me that no one was in there. I was sort of baffled, because I would swear when I came in that door was closing as if someone had went in. Anyway, I still decided to wait until minute, and along comes another woman, appearing that she was probably pregnant, and she was needing to use the restroom also. She asked me and I said I believe someone is in there, but I did finally walk over, turn the handle, and low and behold….a huge "DUH" for me, hell it was empty!!!! Talk about embarrassed! The man had already stood there and told me it was empty, yet brain fog ON, I did not even check!

I was then of course felling like an idiot, and wished I would have checked as I usually do, when I first walk into the front door. But, I would have sworn that door was just closing as I came in. Thus I felt someone was in there. So, I go in,  I am trying to get those tights down, just as you would hose, where they "line up" when you pull them up. Well, I look down and there low and behold is the tag on my underwear! I looked again, and talk about feeling like I had lost my mind, my  underwear were on backwards!!!! LMAO!!! Well, I was now in the midst of not knowing whether to laugh like a hyena at myself, or get out of there and cry, because my mind had officially left the "building". Now, I know some are asking how the hell did she put them on backwards and NOT realize it! Of course, normally you would, depending on how they are made. But, this particular pair were all lace for one thing, and they were designed kind of like that when you just looked at them at a glance it appears the back and the from are "cut" the same. But, yet I had thought something was "amiss" as I dressed.

Okay, then here I am within a time span of about 2 minutes trying to decided whether to turn them around or just leave them. My only issue with leaving them, because n a normal visit to this doctor, your clothes all remain intact, I was going in to let the PA(physician's assistant" take another look at the lump on my lower from abdomen. So, LOL, I was going to have to pull the FRONT of those down a little bit so she could see what I was talking about. LOL!!! Okay I made the decision first of all I did to have time to mess with it, and I would have to take my tights off, turn my underwear around and them get those tights "line" straight again. It was near my appointment by then, and this other lady was waiting. So I pulled them up, was my hands and decided that I DO have a couple of pair of underwear that have a tag in the front. Besides all I was going to do, was grab both my tights and underwear and hold them down about to my pelvic bone so she could examine this lump. She was never know the difference, thus I went in, and she pushed, mashed, squished, massages, and I don't know what all else this freaking lump on my left side! Standing up, laying down, she had me lay down, yet act like I was going to sit a sit-up (like I could hold that half way for very long), along with the OTHER side since I thought I had FELT one on the OPPOSITE side but in the same area over the past few days.


Nonetheless, I found out as I said in my other post I was at least not TOTALLY NUTS, because I kept saying SOMETHING WAS WRONG! I had even thought HERNIA and looked them up to find out all about the 4 or 5 types there are. Which I knew about a couple, but did not realize there were others, mainly named depending on where they are located. I had research everything I could find as I "Googled", and continued when I described this "lump" to be a hernia. At the time what I DID not see, that a "SONOGRAM" often will NOT HOW a hernia!!! Okay, so that is why last week the sonogram showed "nothing". Furthermore, I know that is probably what my Gynecologist "felt" last week. She just did not realize it was NOT an ovary, it was the hernia instead. So, that cleared that up. I was told I had an over left, but on the RIGHT side, the left one they took out. So, at least I did have some relief in the fact, I DID KNOW something was WRONG! And I continued to search for some doctor that could figure it out! Now I COMMEND my PA for finding it. She told me, had she not seen several like this before, she may not have figured it out. Undoubtably, for some reason, due to the place are located even doctors that have practiced for years may not find it right off the bat. So, I again was happy to know it WAS SOMETHING, but I of course am NOT THRILLED with the fact I am facing probable surgery, and from what she said, both sides, because there is also ONE beginning on my RIGHT side as well. I had felt it and yes that is what it is.

So, after the "good/bad" news, I head to the pharmacy to pick up a couple of things, then go home. After I ate, took my medications, changed clothes and settled in, I decided that I needed to find out WHERE in my BLOG were the "Meta tags". If you are not familiar with the term, they are certain "words", in a web site that are put in the coding, in a specific place that helps people to find our websites in searches and so forth. Also the more searches, and having those correct "keywords" gets your site further up the "food chair" in a "search" such as on Google. So, that means MORE people potentially coming to your site, blog, etc.

I have done web design, so I was familiar with these tags. I also have done what is called "SEO" in the design world (Search Engine Optimization), the term, which as I said above helps also even more to "push" your site further up so more find you. Now, don't get me wrong, being I am in
"blogger" and I am using one of their "templates" … "mucking" around in their "HTML" code (the actual code or one of the types of codes used to make a website), is not a really fun party. It depends on how "easy" or how difficult the owner of the site has made it. Most usually have a specific pre-designed spot in your backend of the blog, so you just plop those words in such as for my blog could be (autoimmune arthritis, rheumatoid arthritis, lupus, sjogrens, AAI, MCTD, UDCD) etc.  The goal is to "match" the words most people searching for something like your site will "find" because those keywords helps them to get to your site. Okay, so I go in and find out I have to put this type of coding into the "core" HTML code myself. As far as I can tell, Blogger, for now, (and you would think of ALL blogs they would because they are part of Google), does not have an already pre-designed place for this type of coding. So, I go into where I can do this, I had the code, and put it in where I was supposed to, and it tells me I have some type of an "error". Well, I was baffled, because I had done things correctly as far as I could see. So, I try and look at the couple of "errors", and find nothing. Well, I go to look at a "preview" of my blog, and damned, the very last post I made had messed up "coloring". It did not look at ALL, like I had done it! So, I panicked. I began going through what I had done. Then even "reverted" it as far back as I could to their original code. Still my very last post looked wrong. I was tired, I had been through hell all day, so I decided to stop, it was not make or break last night, and try with "fresh eyes" this morning. Even my husband who is the EXPERT in Web Design and has been doing it for 15 or more years could not figure out anything wrong. Nothing appeared out of place and so forth.

Okay, go forward to the morning. I get up, turn on the coffee pot, go out onto the porch to see what the weather was doing, get coffee, and look at the current FB posts to see what IFAA and Tiffany, plus the others had said last night. I decide okay I have to "tackle" this damned code issue. I will be in a short while using templates to move a site over to a new place. So even though you don't "have" to code the "HTML" coding, it really is a HUGE help due to you being able to find a mistaken or make a change, tweak the coding, etc. I come here to blogger, I pull up my "other older" first blog I began, and changed it to the exact template my current blog looks like. Then I go into that CODE to compare the two. I knew I could find anything that was missing, or different like that. A time saver for sure. I could find the issue just looking at the code on this one, but it make take more time, thus I preferred to do it with a short cut. I am comparing the two, and I am seeing everything just as it should be! Not one little comma, or other piece of code was out of place or missing. I was just baffled!!! All of a sudden my brain come into a "LIGHT" and I decided to put a "test" post in to my blog here and see what it looked like. Well HELL, the "test" post looked totally normal!!! Nothing wrong.

I got to thinking that my very last post yesterday, I copied a portion of it off of Facebook and pasted here. Well, that post had some coding of it's own where the font and so forth was of course more for Facebook! Well, after all of the sheer terror of thinking I was going to have to redo something etc. , it dawned on me about that "code" in that copied and pasted post, overrode the regular code on my blog. Thus it was the ONLY ONE, that had that look! I had nothing wrong at all… NOW is  where I wonder if I should kick my on butt, or pat myself on the back, for a job well done!!! LOL!!!!

So, you can see where my entire Tuesday, from early morning until late night was a total BRAIN FOG!!! I seem to have more and more of these days… and it is frightening.. I can only hope keeping myself on the computer, writing, staying active as far as my brain and thought process, I will not watch that foggy stuff get worse. I never think it will get much better for several reasons, illness, age to name two. Stress, too much to do, not enough time to do it, we get hurried, thus our brains cannot keep up with all we are trying to process all at once….

So, HOPEFULLY the "fog" has lifted, and the actually very cloudy and rainy thunder storming day outside, will NOT bring the "clouds" to my brain for at least one day!!! HAHAHAHA!!!!

















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???!!!!

Monday, November 4, 2013

New Website… Check It Out Lupus People...

Brand new website up for one for the Dallas Chapter of the Lupus Foundation of America!



Here is the url:

http://www.lupus.org/northtexas/home


It looks quite nice. I have not time to go through all of it, but I do like the front page and the "Theme" is cool also...

GREAT NEWS!!! A Monday with good news!!! (what an OXYMORON)

Mondays for many of us suck. There is always something that needs to be done, whether work calls upon you, "house work", errands, the market or whatever it is… For me today I have a visit with my Cardiologist this afternoon. It is just a "routine" follow up, but still it is a doctors visit. In fact I am a little nervous about it, because I need to ask her about a new medication that was suggested to me by my GYN. It is NOT "estrogen" at all, but it does mimic what estrogen does for us women around menopause and its ridiculous things it can cause to happen to our bodies.

Anyway, since I've had two heart attacks, I knew I should ask her about it before actually getting the script and filling it. So, I am anxious to find out what she says. There are other "ways" to handle this, but I am not good at things like creams, and the like. None of us like to mess with those kinds of things… they are messy, difficult to use, or are for me, and I just hope the pill will be okay for me.

Anyway, the GREAT news is that (and I won't give details) yet… but it appears I and my blog will get to be "on" an extremely important site! It is a dream I have wanted to fulfill and never knew quite how. But, patience is a virtue! It was just that I needed to wait until the right place for me and my blog happened. :) I am just so elated! :):) When all of the details are worked out, I will post more about it, and let everyone know where I and my blog will be etc!

I appreciate those who "follow" me…. you are the ones that keep on keeping me on!

Rhia