I'm Back

Sorry it has been a while since I did any updates. Miss negative has been hanging around lately. Finally starting to feel a little  more upbeat. My last update was applying for assistance. Well long story short.. So far we do not qualify. Now I am focusing on getting the house clean, so that if I do end up going back to work then at least the daily will be just pick up. Then deep clean once a week and detail once a month. However, I have a feeling that I will not be going back to work, by my own accord. I have enjoyed being home with the family and being a MOMMY!!!! and WIFE!!!!!
The last three months have shown me that dividing yourself into thirds does not work.
1/3 Home: means cooking, cleaning, raising three kids, getting the oldest to karate, being a friend, allowing my kiddos to have friends and social lives, and most importantly BEING A WIFE!
1/3 Work: means working scheduled shifts on my feet 6-8 hours at a time (after already devoting the other 1/3 to home), lifting items that weigh 50  pounds (sometimes more) for people that expect  to be treated as if they are the first person I have seen all day, smiling through the pain and stiffness because there is the possibility that I could get written up for not smiling, and doing much more then my body wants so that others do not feel that they have to pull my weight as well as their own.
And last but not least, 1/3 to PAIN..... that third tends to take over after a day that can last 20 hours.
In the end I have become one with this condition. My day at home with the kids and doggy and hubby and friends, has been adjusted so that the pain and stiffness is just part of daily life.

How to cope when....

How do you deal with money, health insurance when you are the one with the desease, and the carrier of health insurance. Well, not very easy I can say. First, anger: the condition has already taken so much away. Time with the family, patience,self worth, and so much more. Now it has taken all financial reserves. To top all off lose health insurance. Second fight: fight with spouse without them even understanding why you feel like a failure...hence making them feel the same way. They have failed you in some way. Third cry: finally let it out. Fourth: reality hits and now you know that you cannot go back to the job/career that you had, and you need assistance. Three kids a dibiltating condition and you have already put the time and money into system that is supposed to be there for this situation. Fifth: humble yourself and find out what assistance you qualify for. Wish me luck. Tomorrow I apply for food and health care assistance.
The only good thing that has come of this desease is: I AM NO LONGER DEVIDING MY TIME AND ENERGY BETWEEN A JOB AND MY FAMILY!!!!!

Just thinking

On my own I stopped meloxicam and folic acid, per doc stopped oral methotrexate. Still on Cymbalta (anti-deppresant) and Prednisone (steroid for inflamation) daily multi-vitamin and just added Tumeric to help detox and protect kidneys, liver and stomach.  Started to look into more natural pain relief. It has been a full week off these drugs and I have noticed: my IBS is calming down, my stomach is my friend again AND my hands AND my feet are not so painful! Okat so my back is still stiff, it hurts to stand for more then half hour, but without the other side effects I feel better. Really starting to lose faith in "MODERN" medicine.... I really do not understand the theory of make me feel worse (with nasty side effects) to HOPE to slow down this condition. There has to be another way to balance the immune system.

Finding others like me.

Between the AS websites, You Tube and now Twitter, I have been looking for others that live and cope with the stress of AS AND FM.... So far the count is 1. Most people I have come across are male ages 19-56. They only have AS. And I use ONLY loosely. I have finally found one other female with both. And that amazes me.... Other women (I think maybe 4 in total) with AS most in late 50s. One site says that AS in women goes undiagnosed until the fusing begins. Otherwise they are diagnosed with RA or Ostioarthritis. Or just given muscle relaxers or other types of anti-anxiety meds. However, when talking with my OB, he stated women need to be studied, because pregnancy plays a big role. Also, he has looked into it, now that we know why I always hurt, and found a conection to hormones and flares. I am now keeping a jpurnal for two weeks at a time to see if the flares get worse with pms or the actual cycle. So far pms and the first day!

Heat!

Today is going to be a day of heat! Using heating bed duddy step by step... Hopefully hitting the spa later today.

Annoying and aggrivating

Every month for three to four days before my period hits, I want a new spine and hips! To all the men living with AS all I can say is: just be happy you don't menstrate! Or have to wear a bra around your already tight rib cage and putting pressure on already painful shoulders!

The start of finding it out

Okay so the tweet and facebook limitations of how much you can say doesn't work for me. Most days I have a lot more to get out of my head. Just about a year ago I really got ill. Vertigo, nausea, fatigue, extreme pain in my back and even no mobility in my neck. Even my hands were bad. When I finally went into urgent care (December of 2010) I had a faint pulse extremely low blood pressure, to the point of the doctor hooking me up for an EcG. After three hours there and coming up with only vertigo, blood work was clean for any current scary "bugs" going around and thyroid issues and anemia and well you name it it was checked.
 I was sent to an Ear Nose Throat doctor to have the sinus cavity and cerebellum checked for fluid. All, that MRI showed was extreme sinus congestion with no major infection. One antibiotic after another mixed with steroids mixed with nasal spray...
I ended up at work, four months later still on meds that were not working other than the steroids, and felt this searing pain in both arms. Went in to another urgent care doctor, he suggested that I see an orthopedic and RA. Following up on that, the xrays came back clean. Then into the RA- she did her physical exam asked if I had ever been told I have Fibro Myalgia? Nope. "Well then I will tell you. You have the most extreme case of FM that I have seen in a long time." Then she asked about the scoliosis and went to take measurements of the spine. Didn't get too far she took one measurement of my lumbar. Had me touch my toes (hmmmmm right touch them?!!!) Then I got the news of spondylopathy.
 Now start the blood tests and even more xrays.... Six days later I had the diagnosis. Ankylosing Spondilitis. Even tho I do not carry the HBLN-7 gene. Now to absorb that news. Research time.
I found much information on the net that scared, confused and relieved me. IT IS NOT TERMINAL.