am i going to die in my sleep

Anyone else out there get the unexplained shortness of breath that may oy not be asthma? It seems my body somewhat responds to the inhaler but it doesn't go away completely. Then for some reason it gets worse when I lay dowm

rejection???

I saw my regular Dr today. She informed me that the request she made to the RA Dr to see me was denied by the Dr. Really? WTF! The RA Dr looked at my bloodwork up and charts and decided that even though my life is at an unmanageable state, that my auto immune # is not high enough for her to see me. How nice. So as I am saddled with intense fatigue, confusion from being so tired all the time, and an over whelming set of allergic reactions (all traced back to RA), I am not worth her time. Here is what IS happening. More blood work has been ordered to check my adrenal glad production, as well as my vitamin D uptake, and to check for some potassium/salt problem. This will either point to or rule out quite a few possibilities. I am also anxiously awaiting a sleep study. There is some research that shows sleep apnea combined with RA (or any type of autoimmune disorder) can bring on crazy allergic reactions, particularly skin reactions. SO, fingers crossed, we might have a simple solution that does not involve drugs to help this situation. I'll keep you posted.

RA and infertility

Before you ask, Yes, I do have a child. It took all of heaven, earth, God, doctors, and modern medical science to achieve BABY. She was worth every single bit of the effort. I wanted to bring this up in my blog because I know that I am by far not the only women to suffer from infertility due to side effects of RA. What I HAVE learned, is that many many many women suffer from this, and they DON'T know that their infertility is linked to it. After we were able to conceive at last, we kept miscarrying. After the second consecutive miscarriage in a short time, my OB decided that it was not a random coincidence and that, more than likely, their was a larger underlying reason for it. He took the time to comb through my medical records and search for more clues. On some random medical info form I mentioned that I had juvenile rheumatoid arthritis as a child. Since I was not currently on any medications for RA (*as the joint pain itself was minimal at the time), this bit o history kept flying under every one's radar. Here is what I learned. Many women have RA and don't know it. They may have minimal joint pain, all of which is manageable by over the counter meds. And our busy every day lives tend to provide reasons for that pain. Now it's wonderful to NOT suffer from painful RA, but here's the sneaky unfortunate part. A large percentage of these same women will continuously miscarry with out ever knowing the reason why. What happens is inflammation from the RA attacks the embryo. My Dr said he has had a lot of patients that miscarried all the time and were never able to have a baby, and then had RA at an early age (in their 40s). By the time the women knew they had RA, they were often just past menopause, and it was most often too late for them to seek treatment to have a baby. It is something my OB Dr has come to look for in all his patients who have more than 2 or 3 unexplained miscarriages, particularly when the miscarriages are grouped together in shorter time frames and/or the women has never carried a full term baby. My OB finds this info in my records, and makes a medical plan for us. He knows we can now get ourselves pregnant (another long story for another day). He now had to come up w a plan for Keeping us pregnant. With my particular case, (in other words, other than miscarrying I was otherwise very healthy at the time, although no spring chicken when it came to having a baby), he advised me to #1. go on prenatal vitamins. #2. the moment I even thought I my eggo was preggo - positive test or not - to start taking one low dose aspirin per day and to call his office at once to set up blood tests and such. #3. Once we had a positive pregnancy blood test, he started me on the progesterone cream daily through the first trimester. #4. He recommended a lot of bed rest. Friends, it was a long, scary, taxing pregnancy that was touch and go until the very day we delivered her 3 weeks early. But by God it was so incredibly worth it that I can not even put it into words how happy I am that we gave it all we had one more time. Everyone finds themselves on their own island of problems/challenges/concerns when they can't get pregnant and deliver that earnestly sought after holy grail of baby joy at the drop of their panties like every crack whore in the world can. (once again, feel free to insert your rant here). I hope that someone reading this who has gone through unexplained infertility might just find the last piece of their puzzle, and find a solution for them-self. For the record, my autoimmune blood work still comes back (to this day) as "extremely low but there." Yet it was enough to prevent us from having a baby. *as mentioned before, my history of RA has thus far included more odd side effects related to RA than joint pain itself. As a result, I have not been on RA medications most of my life. I was treated with aspirin (20 per day for 3 years as a child), and with ibuprofen as an adult.

Feel free to unload your guns here.... I know I tend to rant and rave about my problems here on the blogosphere, and I apologise in advance. I just needed a place to express myself and, most importantly, a place to unload that isn't in my family. So if you are looking for a soft fuzzy blog sprinkled with laughter and rainbows, keep looking my friend. I have nothing against happiness, in fact, I strongly encourage it when ever and where ever you can find it, and in copious amounts. While I plan on sharing with you my triumphs as well as my pain, right now I have a lot of pain and worry and I have created this space to let it out. Because quite frankly, I am tired of having my three year old see me cry and be scared. I have try to keep it from her, to insulate her from this problem, but my bubble has burst and the crap storm is pouring out everywhere. As you are obviously reading this, I invite you to go ahead and express whatever you need to express. Get it out. Type in all caps so we can hear you loud and clear. This place is open to you to express your good parts and your bad. Drop whatever bombshells you want. We all need a safe spot to land at night, and a safe place to diffuse during the day. Go ahead and scream how you want to stab cancer in the eye, or kick Lyme disease in the nuts - whateve. We are here for you. I am right there with you. p.s. Stories and encouragement, sunshine, happiness, and the like are all also welcome at any time as well.

I'm making my list and checking it twice. I might have the flu. On top of not being able to breath normally for 7 weeks, I ache all over and have to cough up a lung like a cat stuck on a fur ball every few hours. I can't wait to crawl back into bed. Before I get the pleasure of soft and almost fresh sheets; I first am making my list of possible suspects to bring to my Dr tomorrow. Let's face it... they have yet to figure this out... so it's time to push for answers. And I plan on pushing in specific directions. My Dr has 8 years of records blood test results to compare symptoms and evidence with possible diagnosis. I am hopingq to at least difine what it "could" be and rule out some scarey possibilities. Here's the line up...... Sarcoidosis MS ADEM Systemic Lupus Erthrmatosus Sjogren Syndrome Lyme MD Schnitzler Syndrome Hodgkin's Lymphoma Addison's Disease

Today I can hardly haul myself around the house to take care of the minimal tasks. I feel like I got hit by a truck. Headache nausea short of breath. My usual companions. And today I was greeted w a new byproduct of illness t- my fingertips on one hand are going numb. This is Re-DICK. I want to be a good mom to my baby and at least a decent wife for my husband. I am so angry at the illness today. It is the worst theif I have ever encountered. I know their is more to this medical mishap that just RA and allergies. I have pursued every option given to me thus far. I have been an obedient patient. Now I am DONE waiting for the Drs to figure out this puzzle. My health is declining fast... I have to make a chioce to continue this night train to nowhere or become my own conductor. I have SO MUCH TO LOSE. Today I am picking my battle and mapping out a plan of attack.

I was diagnosed w Juvenile Rheumatiod Arthritus (RA) when I was 2.

My parents moved our family from Ohio to FL soon after to give me the best chance at a 'normal' childhood w the RA. And for the most part- it worked. I had a few flare ups and some odd sideffects. But overall pretty good and far better than average for a person w RA. Then a year and a half ago the Shit hit the fan.