Holidays and Autoimmune Arthritic Illnesses

After bringing up the subject of "holidays and Christmas" when I posted about sending card to the troops, it also again this year made me stop and try to figure out how we "do" the holidays this year. It seems to of course be an annual question now. Used to we always did the exact same thing. My husband and I cooked the entire gamut of a holiday meal. From sweet potatoes, to turkey with home made cornbread stuffing, we did it all "A to Z". So, our first several years together, even though it was just the two of us, our one pup back then Tazzy, and our two cats (who have now passed away, D-Link and Lightening) it was a spread of food, fit for any King! :)

As we moved to California, the day before Thanksgiving there, I had an accidental run in with one of our cats - Lightening. Actually not a "bad" something he did, but our landlady had some guys working on the windows. We were in a upstairs, 2nd story tiny apartment. My husband had just left for work and I heard one of the cats "crying". So, I went to see what was wrong and he was barely hanging on outside the bedroom window. He had gotten on the ledge and it had the screen off of it, so he slipped. Well of course instinct to me said help him, but what did not dawn on me, as that he was totally flipped out. So, as soon as I went to grab him, he bit down into my hand so hard that it pierced all the way through the skin under my thumb. I had several very deep wounds. He had seen it was me and he let go. Bless his heart he was scared about almost falling, and he realized he had hurt me. I was screaming to the top of my lungs, and crying, and calling his name…. so of course he knew I was hurt also. Blood was going everywhere. I grabbed a small towel and wrapped it around my hand. Then called my husband, who of course had a brand new job, that he had just began only about 3 weeks before that… it was a nightmare. He did turn around and come back home. We did not even know where the nearest hospital was there in San Pedro. We have just not been there long enough to know where anything was other than the market, and a few stores on the main road. I knew I needed a tetanus shot, and possibly antibiotics, plus the pain was so intense, I cannot explain how badly it hurt. Any kind of animal bite is extremely painful and since these were very deep gashes it was a nightmare.
Anyway, we already had most of what we needed to cook with and our neighbors had gotten to know us a bit. They were not going anywhere and we had asked them to come over, but since that happened we went to tell them it was off.  So, they came over and helped my husband cook!! It was so nice!!

Now just a few years later, neither of us "feel" physically like cooking that huge of meal in the about past three years. After promising not to succumb to "old" age, or getting "too lazy" to cook for the holidays. But, I guess I have had to "admit" to myself and to everyone there is just no way I can take all of that on… We have to freeze most of it, which is fine depending on what it is, or make my Mom keep some, or give it to the neighbors.

These illnesses change each of our lives in so many ways, in each and every day. Even the smallest of tasks that we used to be able to do without blinking an eye, now become some kind of monumental feat… including dinner for a large family. Just another one of the many, many ways Autoimmune Arthritis "hits" us in the gut with a hard punch at times. It was a horrid reminder over the weekend before when  i took Mom to the Casino. I never gave a 2nd thought to wearing my black patent platform pumps with this very long skirt (maxi-skirt) as I guess they still call them. Yet, as the day wore on, I knew that would be my last time wearing those heels for any length of time. Just to go to church, or something for an hour or so, or if I am going to be sitting down a lot, will be only time I'm ever able to walk in them. Those hours and hours and hours…. and probably about 8 to 10 MILES by the time you walk from one side around to the other and then back and forth again… you definitely get a work-out!

Even that…I was able before to have no problem getting to be checked in, bags to the room, parked and all done. Not anymore, just doing the Huge Hotel walk in itself, and getting around to the elevators that are several turns around from the check in/reservation desk. Then I was the one that did all of the parking, and walking, and then walking and picking Mom up at the door… I am now trying to resolve myself to the fact that some things I will still be able to do, but I must make a very "detailed"plan so I will not wear myself out before I can even have fun.

So, with every turn, around every corner… from the mountain top you trip and side down, only to crawl back up scraping your knees… still to shout Victory when again you reach the top… to when the oceans tides seem to want to blow you into the vastness or when the soft sands of hope caress your feet…. all can just "never" be… So, Accept and Rejoice in what you CAN do, and allow those things you CANNOT do, to be swept into the oceans of where you never have to worry over them again….

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!!!!

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...

8 Complications From Lupus...

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

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

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

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

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

AAI(Autoimmune Arthritic Illnesses & Our sense of smell (Odd or Phantom Smells), Sight, Hearing, Tasting, & Feeling?

I've noticed that often my sense of smell is either "off", strange, or my home, along with the outside around my home smells putrid!

I can walk around my home, as I did just this morning, and everything smells horrible! I was thinking to myself and mumbling that I really needed to "clean" because my house plain STINKS like my dogs left a "puddle" in every room! Now I know that sounds funny, and it is kind of funny, BUT in all honesty, I can walk into a room, or walk outside on my front porch and feel like my entire world is smelly. I smell smoke often outside. Which at times there are those that are grilling, or it is the emissions from vehicles. At this time of the year, people also are beginning to burn their fireplaces also. So, the smell of smoke can be truly justifiable at times in those instances. Yet, I can walk out the door, and smell everything from something "dead" like a mouse, to a "moldy" smell, to the smell of what I consider "bug spray" and the list goes on.

I have also smelled many perfumes that absolutely smell like "Raid" when I just smell them out of the bottle. Yet, they may smell wonderful once they are on someone. Now, I have this crazy smelling as I said as if my entire home smells like "the dog pee". I am a bit paranoid because I have two full grown "puppies", dogs, yet they will always seem like puppy's to me. They are totally house broken, but as they have grown a little older they tend to decide to get mad when we go out and leave them. I at times come in to a puddle of pee on my hardwood floor, which does NOT make me a happy camper. They both have anxiety separation issues, always have. Even if one of us is at home with them, they get upset because we are not both here.

Anyway, I began to do a little bit of research to see if those of us with these various form of Autoimmune Illnesses have issues with their sense of smell. And by "gosh" I am correct! There is definitely many of us that do suffer from various type of "smell" disorders. We do either have a "lack" of the ability to smell (Sjogren's is certainly one that can cause that), or you have a phantom smell disorder where it is not there but we smell it.

I've also seen people say that there sense of smell is actually "more keen" with some of this AAI's. They can smell things that are much further off than other people.

When it comes to all of our senses, smell, taste, feel, vision, hearing… they can all be effected in one way or the other by the diseases, syndromes and illnesses. I have double vision that came up almost a year ago. I've been through 3 eye specialists. Two of them highly specialized, being "Neuro -Opthamologists". After months and months of tests, lab work, and a temporal artery biopsy, they NEVER did truly FIND THE REASON for my DOUBLE VISION!! Thus they blame it on the Lupus!

I developed "Tinnitus"… of which the ENT doctor said " you'll get used to it"… there is really nothing they can do for it… you learn to "drown out" the ringing, whirling, buzzing noises…

Of course then there is the "Vertigo" - that also is not just my mind thinking I am spinning and moving… I DO spin, move and gyrate, at times without the medication, Meclazine… now I just learned a very interesting fact! There is a newer medication that came out called "VertiCalm". I saw it was for "dizziness" motion sickness etc… so I was of course once again "My wondering and wandering mind wanted to know what it was?" I look it up and it is exactly what I take that does not require a script BUT you have to ask them for it at the pharmacy, Meclazine. I've been using it for a very long time… for the vertigo, dizziness, and movement disorder. I take two every morning of my life, and sometimes when I have a bout with it, I have to take a couple more during the day. Now here it is over the counter, out from the back of the counter, and I bet it's going to be MORE EXPENSIVE, than the one I buy from behind the counter. I get like 90 or 100 tablets for usually between 4 to 6 dollars. Since I happen to find this due to a coupon for it, I will bet it is much higher than that for a lot less tablets. It will be interesting to see next time I'm out what the difference is.

So, I've touched on hearing, smelling, and tasting somewhat; along with vision.

The sense of touch I am not so sure about. I don't know that our sense of touching is really effected by any of these illnesses. I have problems with extremely "tender" skin. Sun is a huge "no-no". It can bring on a flare, or certainly make your "wolves mask" much worse, or both. Predisone, along with the other corticosteroids also makes my skin very thin. I bruise extremely easy, or just a small "knock" again furniture when I vacuum leaves terrible bruises. Some of those take months to fade. I have some that are just a "permanent" part of me.

Just to add a bit of humor to this really terrible issue as times with the senses. As far as "touch or feel" I know I have this "urge" when I go anywhere to look at new clothes, that I have to "feel" the material of everything. I am sure as a whole women do that when they shop. But, texture in fabric is a big thing when I am shopping for clothing. I believe that is just one factor of being the "female" gender.


I would love to hear from all of you in regards to these 5 senses. How if you are effected with your particular illness(es)?