Monday, November 4, 2013

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

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

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

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

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

Rhia

Sunday, November 3, 2013

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"...

Processed Foods, Sodium and Autoimmune Disease? YES! They may just be related!

Autoimmune Arthritic Illness affected by Sodium and Processed Foods?


Great Article!WOW! As much as I stay away from salt, salted foods, fast foods (it is a real treat to get to go to McDonald's once or twice a month) and try and not eat as many processed and refined foods… all of us know with life being as busy as it is, means we sometimes would not eat without some of this. Having a few thing at home, that are "quick" for dinner especially, are almost essential in many households. I am a label watcher. But, I have to admit as MUCH as I watch labels for fat, calories, and carbs… I am not as great about looking at the sodium content as I should be. I have had high blood pressure since the age of about 16! And it was not from my diet and so forth. Mom cooked well, and there were not many processed foods in our home. Back then processed foods were not as prevalent either. People really COOKED! Not frozen fish stick, corn dogs, and frozen fries, or the huge amount of pizzas and TV dinners like now! It always just boggles my mind when I go into the market. Here is an entire isle dedicated to frozen pizzas!!! I can't believe there are even that many. Then the next isle is an entire line of every kind of frozen "entree", dinner… etc… and I can only imagine how much sodium are in the "light" or low fat ones!!! As "we" at my house know, and we all should know, in order for the manufacturers to make "low fat", "fat free", "light" and so on frozen foods, canned foods, processed stuff like packaged bologna" the list just goes on and on… they USE SALT to make it "taste good"!! Chips, an isle full of chips, Ice Cream--- damned what happened to Vanilla, Chocolate, and the mixture of the two with strawberry in it??? My Lord, you can spend hours looking at the ice cream itself.  Of course then there is the cereal isle. Now I must admit I do buy a large amount of cereal. I eat it sometimes just dry as a snack. We try to stick to the ones that are also "more healthy"… yet I am sure the sodium levels are tremendous. Candy… another complete isle and at Wally World, it is two isles of candy! Okay where is the "healthy lower in SALT, fat, carbs and calorie foods in these places???? Good question! And people wonder why we have so much heart disease, diabetes. autoimmune illnesses are running amok in this nation, high blood pressure, strokes, blood clots…. damned our diets you think?  REALLY PEOPLE!!! WE are our own worst enemies and the coming of our own demise! IF we did NOT LIKE all of this junk, they would NOT sell it! So, m who's to blame here????



http://www.trueactivist.com/scientists-officially-link-processed-foods-to-autoimmune-disease/



Saturday, November 2, 2013

Donate Today & Get A beautiful Bracelet and Matching Earrings on Sale!

While supplies last, support IFAA's mission to create programs that will promote the equation we aim to solve: Early Detection=Early Referral=Early Diagnosis=Early Treatment=Better Chance of Remission by getting your Designer Awareness Bracelet for $10.

Help us help the patient of today and tomorrow. 100% of these sales will be used to create programs and initiatives to solve the equation. 


                                         Wear your support today! 



                               Purchase at www.IFAutoimmuneArthritis.org



lupus ra ifaa bracelet

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

Friday, November 1, 2013

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



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!

Thursday, October 31, 2013

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.

Wednesday, October 30, 2013

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