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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)?

Testing the New Blog Name….

I've changed my blog name. So, I'm testing it to make sure the new name will be used on new posts… :) Rhia

Halloween. Fall, Holidays and Dealing with Chronic Autoimmune Arthritic Illness

http://www.ifautoimmunearthritis.org

I am quite proud of my poster! It has been awhile since I worked with graphics so I was thrilled to see that I still "get" it. I need to "brush" up a little but I feel much better about it after putting this together!

Smiles on the Outside Sometimes May Not Mean Smiles on the Inside!

YOU can make a Difference! Donate to http://www.ifautoimmunearthritis.org

today!

Moving Right Along Trying to Put Medications in Place for Lupus

http://lupusresearchinstitute.org/lupus-news/13/10/15/positive-results-clinical-trial-testing-lupuzor


This is incredible news! Once again great things are happening in the world of Lupus, why it occurs, how to possibly "kick" it with new medications, and research in such a huge dimension! It thrills me to see this, not just for myself, but for the thousands of others suffering needlessly from all of the symptoms and other "co-ailments" that go along with it.

More Incredible News in the Realms of RA and New Treatments

Many of you have already heard of Simponi. It is one of the latest "biologics" on the scene as far a Rheumatoid Arthritis, infusions, injections, and the like. We have several that you can now give your own self an injection at home weekly on the majority of them. That has made all of these much more appealing so you don't have to make trips back and forth frequently for infusions.

I recently went on Rituxan. My Rheumatologist and I had discussed it for over a year, before we took the plunge. But, I had already tried Humira for over a year, had tried Orencia for several months, and I still had severe pain, and what felt like my feet, ankles, heels, fingers and thumbs were just degrading daily. The pain had gotten so intense, I feared we would not be able to get it under control. Lord knows I take enough medication for various types of pain, plus I have my pain pump that is internal. That sucker still has to be refilled about every three months. Due to my insurance just jumping off the roof in pricing it almost would be cheaper for me to take pills. But more than likely I would never be able to get enough meds in my system to do enough good on my body to stop the pain. The pump alleviate's most of that. Since the medication in liquid form goes directly through a small catheter to my spinal fluid, the medication goes straight to the part of the brain that needs it to get relief. Thus it takes a very minute amount daily to get that relief, verses me having to try and keep up with, and take on a daily basis several pain pills at different intervals. So, for know i will say due to my situation, the pump was and is still the answer. Now don't get me wrong, it absolutely does NOT take away ALL the pain, nothing does. But, it sure resolves the fact that I am not "out of it" or groggy and so forth. I have no side effects as you would with it being orally taken.


Now as I said I got a notice this morning via email that Janssen Biotech, Inc has just came out with a "new" type of the medication called "Simponi Aria". If the Rituxan for some reason decided to not work, I would definitely look into this medication. The link is below:

http://www.simponiaria.com/?utm_source=3504&utm_medium=email&utm_content=simponiaria.com&utm_campaign=august_2013

More News on the Lupus Front

It is very exciting to see all of the ideas, research, advocacy, and funding for even more research that is coming out when it comes to Lupus! I have gotten at least 4 emails just this week alone about things that are just incredible when it comes to the realms of Lupus!

Here are a few URL's for you to read:

http://www.lupusresearchinstitute.org/our-research/advancing-lupus-care-through-research-and-advocacy-progress-and-promise-lupus-patients

this one above is about the Advancement of Care when it comes to Lupus through Research and Advocacy. Novel research through genetics that will come to target of drug development to help in the fight of two very serious complications that happen often with Lupus, which is kidney damage and damage to the heart. As of now there are 30 different clinical trials that are going on for these two particular complications in themselves. The more clinical research going on though means the need for more patients who meet the criteria and are willing to go through these clinical trials. Several other issues were addressed, along with these, and you can read about those also in the URL above...

As with all of our clinical trials for possible Lupus medications, as well as other Autoimmune Arthritic illnesses, we must have change in the factors of getting insurance companies to pay for the drugs once they are on the market and out there for patients.

I realized through my own illnesses, the medications are extremely expensive. If my insurance decides not to pay for any of them, I would not be able to afford them myself. So, we must continue to advocate in order to make sure that we have insurance companies who are willing to pay for these medications as they are approved by the FDA and out there for patients to use.


This next one is difficult for me to believe, simply because just about any time I "flare" with my Lupus, I begin with a headache, that I often refer to as a "Lupus Migraine". It will not stop with just "pain medications", no matter how much you throw to try and stop it. The ONLY thing I've found to halt the horrid pain of one of the headaches is corticosteroids. I can get an injection of Solu-Medrol, along with a 14 day step down packet of prednisone, and about 18 hours later the headaches begins to subside. So, to say the Headaches are "not" related to the Lupus Disease and its Activity seems wrong to me. But, that is myself, and not everyone as a whole out there. That would be a great poll to take, on the average how many of us have some form of a migraine, or headache when we have a flare coming on ? It would be interesting to see what statics we came up with as far as us and headaches.... Here is the URL:

        
http://www.eurekalert.org/pub_releases/2013-10/w-hil102413.php

Lots of New News After What Sounds Like An Extremely Successful Rheumatology Meeting/New Pain Medication Approved?

I've already heard great things from the weekend's meeting of the American Board of Rheumatology. There are already many articles coming out about medications, new research, and all types of things that will probably be coming out in news articles over the coming weeks.... There is also an article in the NYT's today about a new pain medication approved by the FDA. Due to all of the controversy over the "narcotic" pain meds lately, this of course was a mixed blessing depending on which angle you look at it. My understanding is that it will have a "security" type coating built into it, or something where the medication is not good if it is cut, smashed, or so forth. I am still looking into it, but I believe from what this article says, that will be the case.... for more information see this URL:


http://www.nytimes.com/2013/10/28/business/fda-shift-on-painkillers-was-years-in-the-making.html?partner=rss&emc=rss&_r=0

Lupus Patients and Low Income/Medicaid

http://healthyliving.msn.com/health-wellness/many-lupus-patients-forgo-needed-medication-study-finds


I can totally understand this.... Medicaid is different in different states... so there are many places medications may not be affordable to someone with a low income...