The Latest In Clinical Trials

"A Way To Provide Help and Hope for you and for others with AAI illnesses and other AI diseases also "

I received a new "Clinical Trial" email yesterday with the current list of Clinical trials you can search through to find that some may be a fit for your illnesses, along with where those are located, what they involve, and to see if you may qualify for one.

These can lead to helping not only the patients who get involved but sometimes leads to helping many others because someone stepped up to the "plate" and decided to do one of these.

You can either "join" for free, or just do a "search" with key words, and then the closeness to your location in miles or zip code.

Here is the URL:

http://www.clinicalconnection.com/SearchStudies.aspx


I recently spoke with a gentleman that happened to have Lupus. We met at a meeting, and when I was telling someone about my own experiences with "prednisone" he asked "Do you have Lupus?" Of course I said yes, along with several other autoimmune arthritic illnesses. We got to speak that evening for a long while and it is amazing the people that seem to be put right into your life just when you least expect it. He had been originally from the Houston TX area. He had participated in a clinical trial and talked with me about it.

He said he had a good experience with the one he participated in. I had wished that someone could have pointed me in the direction of these trials when I was first diagnosed, or barely diagnosed with one of several AI illnesses I have, so I may have been able to STOP or slow down some of the damage that is now too late as far as medication wise now. So, my own experience led me to surgery on several joints, and replacements on three large joints, and a 4 level cervical fusion, discectomy & two artificial discs replaced two of the severely damaged ones.

My own Rheumatologist in fact does research, and also teaches, plus still sees some of his patients. He had talked about a project "one of the clinical trials" that were putting together, and then I found out the place he teaches and does research at in Dallas, is also very well known for all of their clinical trials.

As for myself, before I had found a "great" Rheumatologist (who I thought I might lose in fact to his research and teaching), fortunately I didn't, by the time I really got to know about all of these "trials" I was in a good spot with medications, doctors, tests, labs and so on.

So, rather than let other people get under the radar and not be able to possibly enroll in a clinical trial, I try to make sure and put the URL up when they send me a current list via email. There are absolutely so MANY of them going on, and if you are fairly near a big city, I almost guarantee you can find something that may be of help to you.

Of course there are "trials" on ALL types of illnesses, but when you search for RA, Lupus, Sjogren's, MCTD. UCTD, JA, Still's Disease, Ankylosing Spondylitis, Psoriatic Arthritis, you certainly will find an entire host of trials for those illnesses.

Of course there are so many other Autoimmune Illnesses such as Multiple Sclerosis, and that list is into the hundred's that I am sure there are plenty of trials to go around for many.

It can be a way as I said of helping your own situation, possibly others also, and make way for hopefully a quicker and accurate diagnosis, more medications, possibly more ways to put these illnesses into remission, stop them before they begin, or possibly CURE those that are now suffering from them.

(Off The Cuff) well sort of, Talk About Having the Heck Scared out of me this morning!

Morning All! I had been checking email this morning and reviewing the weather, latest news, FB posts and so forth. Then I come here to see what is happening, and I could get into the "backend" of my blog. But I could not SEE the actual BLOG itself!!! I just about had a heart attack! I thought something had happened!

I could not get it to come up in either browser. I kept trying and trying, was just about ready to cry. Then I went into another area of the backend where I can make changes etc. From there I can also view the blog, and FINALLY, it came up. I guess I happened to be in here while Google was updating blogger or something. It is NOT a great way to start out your day for sure.

I hope that my "off the Cuff" post to the blog, will kind of give an "introspect" to "life" as someone who has "autoimmune arthritic illnesses" yet still does want to live life as "normal" as they can. That is IF there is a normal to any life these days.

Bear with me this morning. I think Blogger is updating something and I am trying to figure out the proper key commands to get the "emoticons" to work on my blog. I used to be able to "code" them with the ASII coding. Of course then they make them easier for FB, Myspace, and other places like the Messengers. But, I am still thinking I should be able to use them here on my blog without having to use HTML code to do it.

I am up to my eyeballs in "overload". After only being gone overnight, I came in yesterday and just was "aggravated" all day long. For one thing the "brain fog" was terrible. I could not type, think, I was dropping everything, spilling everything, and everywhere I look even this morning seems to be a pile of junk I need to either throw away, do something with, dust, clean, vacuum, check on, fix, make, wash, clean or whatever!!!!

Then having to think about going to the surgeon with this hernia is not making it any better. Especially when Jim's shoulder and neck are NO better! We maybe facing him having an MRI and no insurance. Even though we found that the "Hope clinic" will get it done for a very reduced rate, it still means over $300.00! PLus on top of all of that, I have a few teeth that are not "right"…. I fear I have another cavity at the gum line on a top front tooth… and then several they pulled, seem to have the teeth next to them either have chipped off or something, they are cutting into my tongue and cheeks when I eat or talk! LOL!!! Well heck, good way to lose weight and not have to have people listen to me griping and whining. I know several that would probably be overjoyed at the idea that I couldn't talk for a few days.

Then the dogs are not really well. They are getting a bit older and the younger one, Bubba Gump, is ALWAYS COLD! Bless their hearts they are not happy campers about this sudden change in weather. I am having to give them Claritin and Benadryl for allergies. Then all of my plants (and I mean over 50)  had to come in due to it getting cold. Well, they aren't happy either! They are all pissed, and their leaves are turning brown, yellow and I am pulling so many leaves off of them, I fear I will lose them!!! My house is just a wreck. I got to looking around yesterday, and I need to have a major (throw away) session! Our home is tiny. About a 1,000 square feet! We have to "make shift" closets, because there really were not any when we first bought it. Don't get me wrong, we are still thrilled with it. But, I seem to have become a pack rat I guess. I look around and it seems I have just too much "stuff"! The older I get the more I want to "reuse", "recycle" etc. And that is a good thing! There are MANY things I do that really help the environment, conserve waster, and save money that is for sure. But, I think I have also almost gone overboard and I catch myself "saving" this, that or the other, thinking "Oh, I'll find something to use "this" for?" Then 3 months later it is STILL SITTING HERE, piled up and NOT used! Thus, I am going to get a HUGE box and begin recycling right to the recycle, or to Good Will, or we have a place here called "Soul's Harbor". It is kind of like Good Will. They take all kinds of "stuff" and resell it, for a tiny amount. In fact many people go there for "odd" things such as old china, and things you probably might find at a "thrift" store that has been in the community for decades like this one has. It was here when I was little, thus it has accumulated LOTS of "stuff"… as they say one person's trash is another person's gold mine!

In fact, we laugh at my Mom. She tends to go through these phases of getting "bored" I think more than anything. So, she goes through every closet, every drawer, and starts "boxing" stuff up. Then 2 months later, she unboxes it all, and then puts it all back in another box! In fact she has really "thrown" so much away, or given it to Soul's Harbor, that I don't know where she even finds anything to box or get rid of anymore! Heck, I've taken so many things for her and gotten rid of them, I am surprised her house is not completely barren. But, as I said, I think for her, it is something "to do" to keep her busy, especially if she can't get out due to weather, etc. So, I just smile and let her talk about how she is getting rid of this, that and the other. Then fuss because she doesn't have any new clothes etc. Bless that woman's heart, she happens to be one of the most DIFFICULT people in the entire world to BUY FOR! OMG, my Dad bought all kinds of stuff for her, and she always took it back, or gives it away. No telling how many things I've gotten for her, thinking it would make her life easier, or it was something she could "really" use, and guess what? She either gives it away, gripes about it, or gives it back to me rather than use it.

I can recall after I was grown and married, Dad calling me a couple of weeks before Christmas telling me to "go by Mom" something from me for Christmas! And as I always told him, she will not be happy with it if the President gave it to her. She can't even buy anything for herself she likes. She winds up never wearing it, or taking it back, or again just giving it away. Clothes and shoes are the worst. No lie, I spent a YEAR, or more trying to find a PAIR OF SHOES, that woman could wear and LIKE! We have been shoe shopping more times than I can count on both hands. And every time she would buy some, go home, leave them in the box, and gripe about them for some reason. She wore the same pair of worn out "sandal" like shoes through "ALL" seasons, and I could NOT find any shoe especially closed in for the Winter should would wear. So, about a year ago, we were in Belk, over in Waxahachie. Well, the lady in the shoe department over heard our discussion. Again Mom took back yet another pair of shoes, to exchange. Well, the woman said she had the perfect shoes as far as "comfort" that Mom could ever put on her feet, BUT they are not PRETTY! And they aren't. They are the "clog" type of shoe, and are a black suede leather enclosed of course in the front. But believe me, they are not made for "dress wear". They ARE made strictly for comfort!

But, low and behold, the lady brought a pair out in Mom's size. She put those shoes on, and never took them off!!! She put her old worn out shoes in the box, and wore those out of the store! I almost fainted!!! I thanked that lady about 10 times!!! OMG, talk about a relief! And believe me she wears those suckers everywhere with everything.

NOW! If I could ONLY FIND her some pants, tops and dresses she liked that well, half of my life's problems would be SOLVED!!!

So, even though this is kind of "Off the Cuff"… it is also about how we, each and every one of us with these Chronic Daily Autoimmune Arthritic Illnesses, STILL DEAL WITH DAILY LIFE! We have ALL of the daily "stuff" to do, along with trying to KEEP OUR OWN BODIES, from DESTROYING US! It is a difficult battle, and not one for the weak at heart…..

A "New" place called "Off the Cuff" on my Blog and the First Official Post on It!

I hope all of you have a had good past few days. If you have "missed" me, as I said on Facebook, then I am happy to know you did! LOL! If you didn't then that hurts my feelings a bit. ;)
                                                 

"Off The Cuff" 

As I wrote on FB, Mom and I were gone overnight to the Winstar in OK! By the way, if you have not been there, or have no idea about the place, well, it makes some of the casino's even in Vegas look tiny!!! It is supposed to be the Biggest Casino in the WORLD!!! And if it isn't they are trying their damn hard get there. It is well over 2 MILES to walk through it from one end to the other! You ca n imagine when you walk through the slots for hours and hours how much exercise you get! AND IF IT IS NOT big enough, they are adding yet ANOTHER hotel (They have 2 and a smaller motel), plus adding about another 100 or more slots. I just cannot fathom to tell you how large it is. I've been to Vegas and as far as the "casino" itself, I don't think any of them are as large.

Now, for one. I had an idea this morning (through all of the fog that is in my brain) that I would do something called "Off the Cuff" in my blog. Mainly I write about Autoimmune Arthritis, Sjogren's, Lupus, Chronic pain, illnesses and other AI diseases. I post all kinds of things from the latest information about treatments, articles from some of the foundations, and so forth. But, I also like to throw in some of the more "personal" pieces of me. I talk about my own illnesses, and treatments, plus all of the things that go along with them in life. I have always wanted to "help" others "see" that through my own experiences, they also can have a "good life", but NOT FEEL GUILTY about being "chronically ill". It is very difficult to go through life, with a daily illness and not have it "consume" you. I know, because I have to work everyday NOT to allow it to do so!

So, I wanted to say first of all, I am thrilled for everyone that makes an effort to come here. I hope that since I have given the blog a whole new look, and the way you can see it, that it will be much easier to read, and use. So, that is my first step. Bear with me, because I know I will be making more changes as I go. For one, I will be adding more URL's that pertain to the Autoimmune Arthritic Illnesses. Along with treatments, non-profits, places for you to get information on them and so forth. I am also adding other "blogs" that I enjoy. They are also about these illnesses, how they effect their lives, and they can help you understand some of the things in your own life that happens.

Okay, on this first "Off the Cuff" post….

Mom and I went to Winstar in OK, as I mentioned above. We left early Sunday morning, and drove arriving about 10 a.m. It is about a 2 and a half hour trip. So, at about an hour and 15 minutes of it, we have "our morning" stop every time we go. There is a "McDonald's" at the half way point we always stop and get our "breakfast"…. LOL!!! Usually it is the same. Biscuit and sausage or an English Muffin and sausage, plus coffee! We are "big spenders" as you can tell! It also gives me a moment to get out of the car, rest my legs etc, especially if I am doing all the driving.

From there of course as I said above the place is "Gianormous"… if that was a word! So, we have our particular door we park at, and as always that is our first stop. We were spending the night on "their dime" this time. Winstar had sent us free rooms for 2 nights, thus that is when we stay overnight. Which is better for me if Mom and I go alone. I don't get so tired out from driving both there and back the same day. Well, we played for hours and hours. In fact, I pulled out a $20.00 bill when we arrived. At 4:30 that afternoon, I STILL had my 20.00 plus some on a ticket! LOL! So, I was in good shape in that respect. It is just hard to believe how many people are there, and how huge the place is. Around 2:30 pm earlier I had went around to the hotel that is "attached" to the Casino. (They have a brand new 500 ROOM one behind it!), checked in so we didn't have to worry about that later. We didn't even go up to the room at that time. We went back to play, then ate around 7pm, and by 7:30, (I had pulled a stupid stunt and wore the "wrong" shoes this time), my feet were hurting so badly, I thought I was going to have to go barefooted to get the car, take it behind the casino to park at the hotel entrance, then let Mom out with the bags, parked it and then finally got back in.


  Anyway, needless to say, by the time I got up to the room, my feet were in such bad shape, my little toes were almost bleeding, and I had two "stone bruises" (like blood blisters) under my big toes. I had worn a pair of black dress heels that are a bit "platform". I have a brand new black and grey striped very long skirt I wore and needed those heels really to wear it. But fortunately I always take another pair of shoes, which I took my sandals so that way, I can wear those when I have my feet worn out! I know stupid, but I know you "girls" understand what I am saying. I so rarely "go out" like that, so when I do get to go, I want to be "dressed to the nine's"… So, for me it was a huge ordeal to get to dress up and wear those heels too. Of course I am paying the price for it, but still it was "partially" worth it… :)

Anyway, a couple of "odd" things that happened. First of all, we had already gotten to the room, had talked, changed clothes, and was watching television. Mom was already asleep, and I heard this "KNOCK!!" at our door. Well, I knew there should be no one knocking, and I looked out the peep hole, and saw no one. I just figured someone was at the wrong door by mistake, and went back to bed. Well, it happened 4 MORE times that night! Each time not a soul was there, that "I could see". There was no way I was going to open that door at all, and it was dead bolted and locked down, so I was not really worried. I guess I should have called the front desk, but it was wee hours of the morning and I just said to heck with it and went back to bed. The one thing I did realize is that our room was the first room out of the elevator as you began down that hallway. So, someone could knock, then just step around the corner so you could not see them, and maybe they thought if they knocked long enough someone would be stupid enough to answer. Plus even though the place is huge, I also know at times, Mom will even say, that sometimes a "guy" will be looking at me, and of course I don't see it. I DO watch my surroundings of course when we go alone, but as far as noticing someone "watching" me while we gamble I am not aware really, but she is. So, when we checked out yesterday morning I told them, and mentioned where we were as far as the elevator. I kind of got to thinking about it on the drive home, and felt like possibly someone noticed we were "alone", not had anyone with us, like Jim in other words. Maybe someone did happen to be watching and followed us. Then thought maybe I would be stupid enough to open the door if they knocked enough times. I thought about it because when we got in the elevator that night on the way up, a guy got in right behind us. He saw what floor I pushed, and when I asked him what floor, he say the same as we were on, the 11th. Well, at first it did not really bother me, but the guy just kind of acted "odd". Plus I don't recall seeing him go down "either" hallway… you could go left or right after you got off the elevators. Our room was just off to the right, by them. So, it dawned on me, he may have followed us from the Casino to the elevators. I was so tired and my feet hurt so badly, that I probably didn't think about it. I had left Mom in the lobby with our bags, and went to park the car. Stupid me, didn't think about just letting the valet park it. I was thinking I would get in the handicapped place and it would be close. Well, hell they were all taken of course, and I had to park a good ways off. But, I thought he may have seen me let Mom out and then followed us as we went up. Maybe not and maybe it was someone just being as ass. But, usually in a Hotel at a Casino, there aren't kids, and at that time of the night, people are either asleep or down stairs gambling, and why our room???
Needless to say, I did not get much sleep. Between the damned knocking, and my feet itching and burning… by 4:30 (my usual wake up time) I was up and trying to get a bit of coffee down me (which their coffee thing in the room sucks)… so we could go down to find breakfast. That was another thing. The Casino built another HUGE buffet. BUT, they actually closed the other one, which they need both. And the new one does NOT serve breakfast at all. Yet, not one soul in the casino could tell me where they serve breakfast! It was nuts. So, we went down and decided to just check out, get the car, put our bags in it, and then drive around to play. Well, low and behold, right across from the registration desk is a brand new restaurant, and a very nice one, with linen napkins and the whole nine yards. In fact I think one of the glass pieces they had was a "Chihuly" piece, and it was totally amazing! Anyway, we had a wonderful breakfast, I got the car, and we drove back around to the front of the casino where it was closer for us to get into it, and then leave when we got ready. The Hotel is SO FAR away from the front entrances of the casino, it takes something like 15 minutes just to walk back to it. Thus moving the car is definitely a must.
The other "odd" thing that happened was just terribly weird. Mom and I were playing and I turned around to see where the nearest place was to get a drink. I noticed two or three of the main casino guys that are on the floor to help with machines etc if something goes wrong. They were standing around this man, who had been playing on a machine to the right of me, across the way. They were really having one "serious" conversation it appeared, so I figured maybe the machine grabbed his ticket, or something like that. In fact, after I got up, got us some tea and came back, my machine "fouled" out and took my ticket and would not play either. I waited almost 45 minutes for someone to come fix it and that was after asking 4 times. Anyway, after these men talked to the guy playing for awhile, I noticed a "security guard" standing right there by this guy. He kept on playing and appeared to be the same machine, but that security guard did not leave his side. I even asked him if he could get someone to come help me, and the entire time the guy kept playing, but that guard stayed there. That was very strange. I never did figure it out. Anyway, just odd for sure.

We had again got over to the Casino EARLY by about 7:30 or a little after, so by 1:00 pm, I knew I had a drive ahead of me to come home, so I was about ready to leave. LOL, I think Mom would have stayed if I had said let's stay, but she does when she is NOT losing, and she is winning a little …:)

So, we walked past the "high rollers" room, one of several they have. This one is mainly $5.00 and $1.00 slots, and of course they have others with the $10.00 and up. Anyway, she wanted to go in and look around, so we did. She decided she wanted us to put a hundred dollar bill in one of the dollar ones and play it! So, we did. We played on several of the slots in that bank of dollar ones. She had so much fun doing that. LOL, of course we were not fortunate to win, but it was cool to watch her have a great time.

We left after that, and traffic was a bit heavy through Dallas, but we made it home without a scratch. I was glad to be home, and my two dogs were just so happy! They just would not leave my side. I was glad to see them and Jim. I had missed him and hated he did not get to go with us this time. He usually does, but he still has the neck and shoulder ordeal bothering him, plus he is trying to catch up on work also, so he decided to stay home this time.

Anyway, that was my Sunday and Monday, and it was good to get away; although when I get home, then I feel like I've been gone a month! It seems I am SO FAR BEHIND… with online stuff, my volunteer stuff, my blog, email, doing laundry, cleaning house and it never ends… and then I have not been to the market for my "monthly huge" bill of groceries, so I have got to get coupons in order to do that. I am so far behind on my "stockpile"! It sucks!!!!!

Also, one other thing. I may have mentioned my "lump" on my left lower abdomen several times. But, as I said, my brain fog is bad today. My brain is trying to swirl and take in about a million things I need to do, and I just can't get it all straight. I went of course to the PA, a sonogram, a Gynecologist, then back to the other PA in my PCP's office. She, the last PA, FINALLY found out I do have two hernia's… yes not just ONE, but TWO of them!!! The left one of course is what sent me to be looked at. Honestly, I really thought it might be a tumor. I have "stomach cancer and colon cancer" in the family, so I was kind of concerned. Then when the sonogram showed nothing, honestly it concerned me more! I have to see a surgeon and was supposed to go tomorrow. But, I am postponing it until next week. I've got so much to catch up with, and I can see him here in town on a Monday or FRiday, rather than having to travel out of town, which takes more of a day up. So, as I find out what the deal it I will let you know…

Okay, other than I am SORE, TIRED, and BRAIN DEAD… I am happy Mom and I spent the time together…

I'll get my head back on straight in a day or two…:)

Rhia


If you care to see how huge this place is:  

http://winstarworldcasino.com













     

A Flare, The FLU - I PRAY NEITHER!!!!!

I HOPE I am NOT in a FLARE!!! 

I have had to cancel me going to our High School's last football game with our big rivals over in Waxahachie, our county seat. We had planned to go several weeks ago and I bought tickets yesterday. BUT, it was NOT supposed to RAIN darned it! So, I have felt a bit "off" today for some reason. Just had a headache, my stomach not all that great.. and NOW it appears we will have rain about time for the game. Well if it were something extremely important, then I would "push" aside the warning signs of either a flare or my worst fear the flu. I have not gotten my flu shot yet and I've in the doctors office twice in the past 10 days. They were out of the vaccine this last time I was there, thus I have not went onto Wal-Greens and gotten it. Now I almost feel feverish, cold yet kind of clammy, and my legs and lower back are achey. So, bless his heart I guess he will have to go alone. He has called everyone we can think of, and of course the one time he tries no one is available In fact, one of the guys from his meetings has Lupus. He is in a flare right now actually. My husband called him earlier in the day to see if he was going. We had talked about catching up at the game and all sitting together. I met him Halloween night at the "birthday" meeting, and happened to mention the BAD "P" word! Prednisone… and something else was said and he happened to say he knew that P word well, he has Lupus!!! Wow, it is amazing how to "meet" other "birds of the feather"  Anyway, I DON"T want EITHER!!! And sure as HELL not the flu. Last time I had the flu, I got double pneumonia AND WHOOPING COUGH with it! I was on the sofa for about 8 days and could not barely crawl to the bathroom and back. It is a nightmare…. so at that time I had not been diagnosed with any type of AI diseases, but a PCP there already suspected it and was going to send me to a Rheumatologist there in Seattle. We came to Ennis before I went thus found out probably a great deal "too much" later about the MCTD, Lupus, Sjogren's, Raynauds, and the RA. Anyway, keep me in your minds over the next 2 days. I and my Mom are supposed to be going to a Girls overnight trip out on Sunday/Monday to OK, to Winstar! I am going to be extremely miffed if I am too sick to go! :);) Autoimmune Arthritis Illnesses??? "Ain't they grand?!"

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

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:

      http://www.ifautoimmunearthritis.org

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!!!!

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???!!!!

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...