thank you for all the kind replies from my post earlier this week.  thank you so much.

today is a better day.

i was diagnosed with disabling conditions in 1997.  i continued working until 2010.  at that point i was a shell......my doctor ordered me onto the bench.  she said enough......stop work or you will die.  ohhhhhhh.........myyyyyyy.  i finally heard her.  i stopped, i was so ill at that point that i was only able to get out of my house every 6 to 8 weeks to run an hour or two of errands.  the rest of the time i was housebound......too ill to mind.

i found DS in the fall of 2010, that was a real Godsend.......I found people like me, I found hope........I was able to fight through the brain fog and begin to formulate a plan to adjust, to figure out how to live as the person I am, not the person I was.  I worked really hard to find joy, to rediscover my smile........I worked in every area I could think of, I even went so far as to create a mission statement.  I changed doctors, medicines, the way I do housework......the way I shop, the way I do so many things.  I changed what I watched, read, wear......I changed and changed and changed.  And through these changes I found my smile again, I found joy..........I found a new appreciation for the simplest of things.  I found a self that got to do things.......I had gratitude and faith.  I still do.........

So there I've been moving through the challenges of life changing health issues.  Finding ways to deal with the obstacles of flares, that leave you alone for weeks sometimes months at a time.  I've had to deal with a lot.  There are many of you out there who have also faced very serious challenges and my heart is with you and for you!  To encourage you, to pray for you.........to be compassionate for all you are dealing with.  It is hard........through all that is hard, you are worth it.  Working though stuff, finding a life......finding purpose, peace, contentment and joy. 

Worth it!

My pain levels began to climb, but since I'm always in pain I thought it was just worse than usual but more of the same.  Then it got to the point where the pain was handling me and not the other way around.  My son brought something to my attention on a day when I was trying to hide my pain, obviously not well.......and he wanted to know what was going on.  It is not like me/my character to be a snotty talker......to snap at or snipe at others.  I'm usually the calm patient type.....so for me to be a butthead was NOTICEABLE.  sigh......trying to inject some humor into all this......

This heightened pain led me back to my rheumatologist.  She suspected that I had another disease.  How could I have another disease? I already have my own pretty impressive list.  No others need apply........but on Monday of this week it was confirmed that I have not one but two more autoimmune conditions.......

I've been taking prednisone for the past few months and it's knocking the stuffing outta me.  I've gained weight, I'm having problems breathing, healing from a cut or bruise, I'm dehydrated despite drinking lots of fluids, I can't lie down to sleep......my pain is through the roof, and I am at even higher risk to catch anything........I don't need to be around anyone to catch bad stuff.......I got scared.  sooooo scared, so overwhelmed.........and freaked out.  i had a meltdown on the phone with my son......which made me feel like a crudmonkey.  i don't like to cry ever.....but especially now, i can't afford to spend my limited energy on tears.......and i feel extra bad putting this on my son's shoulders.  i feel like i should be telling anyone else that is not my children.......but i don't have that.  i mean yes i can and have shared it with my ds pals, but it's not the same as realtime hugs and understanding.

i hope y'all can understand what i mean.  i have CFS/ME, Fibromyalgia, Sjogren's Syndrome, Osteoarthritis, Stenosis, GERDS, High Blood Pressure, Thyroid Disease, Barretts Esophagus, and more......diseases that all impact my autoimmune system.

But as of Monday it's official I also have Polymyalgia Rheumatica (PMR) and Hypogammaglobulinemia......it felt like the roof came down on my head.  I saw my rheumy on Friday but she said I had to come back to give even more blood for additional tests asap.......so I came in on Monday feeling like the crap on the bottom of pondscum's cousin's shoe of death. 

yeah, a bad day........they couldn't get any blood outta my arms so they went for my hands.  every vein they stuck blew up.......then i found out i had a balance of unpaid visits i didn't know i had......so i had to pay them an unanticipated amount that day.  that didn't ease my worries at all......and I don't understand why they had not sent me a bill.......they agreed that they need to do a better job.  duh.......

a limited disability budget doesn't do well on big balances, i try to keep that even too, by paying things each and every month so there are no surprises as much as that is possible to manage......

then i went to my regular doctor cause the difficulty breathing scared me, yes i had gained weight taking prednisone, and gotten the moon face people talk about.....but my sleep apnea had not been an issue for me in YEARS.......so this really scared me.  see i've also had DVTS in my left  leg and life threatening pulmonary embolisms in both lungs, so the breathing thing could be sleep apnea or it could mean a clot.  which is very scary to me......gotta pop the scary balloons and find out what is going on.

meanwhile i am supposed to schedule a mammogram and then after seeing my regular doc he had somebody call me about going to see a pulmonologist, which i have zero memory of him suggesting that this was needed.  so i am scared, frustrated, worried and forgetful .....

my reg doc told me that the prednisone had caused the new weight gain, the moon face, the bruising, the slow to heal cuts, the breakouts on my face (i never even had acne as a teen, but now........oh my).  the difficulty sleeping, breathing, my blood sugars are off.....suggesting that i am prediabetic all because of the PREDNISONE........there is more bad stuff than this but you get the idea.......I need to be off prednisone asap cause my body is going crazy setting off health alarms. 

they are testing me for TB/Hepatitis.....not that they think i have those diseases, somehow its to make sure my body is strong enough, healthy enough to be on methotrexate, which is how they want to treat the PMR.  there will also be a treatment for the hypogammaglobulinanemia but i don't remember what that is........

after my regular doc i had to go to the hospital and have a chest x-ray.....and still get myself safely home.  my left leg and foot were so swollen that i couldn't get regular shoes on.........i stopped to buy some soft slippers on the way home cause it hurt too much to drive barefooted......i cried putting my left tennis shoe back on and limped into the store........but thankfully found some soft dearfoams at ross.....velvety navy blue no hurt slippers. 

i also have pain from diverticulitis at present........and while writing this i had an accident on the way to the bathroom.  (i know this is a tmi moment, but i am in the all alone mode of a flare with too many symptoms and too many diseases trying to be all fake brave today..............

even a better day like today is a rough day.  i have to find the good in the smallest of things......they matter, i matter. i am trying with all my might to have a good day. to be in a calm place in order to handle this.  i wrote a note today to the pastor of the church asking if he could send me some visitors........i need to bring the outside in, know that life is happening. that there is something good out there making it worth it to get back even in the smallest of parts.

when i feel good i try to be a part of the community, volunteer time at the local museum, the festivals, the blood bank, help children in need, help the food bank......get out of my head and see the world as a good place, a joyous place where we GET to help......where we GET to do......Monday was a last straw kind of day and I lost it.......I was on the edge of WHYMEVILLE in the STATE of ENOUGH IS ENOUGH......but apparently I was wrong about that.  There is worse, but hopefully I will find a way through this newest challenge.....I will find heart and hope and light and a measure of peace. 

My glands are so swollen...my spine is in rough shape, I'm dizzy and hit the door way a few times, but thankfully I didn't fall in the shower today.  Any little bit of good is good.  I did the dishes, put the trash in the garage, have laundry going on........I fed my kitties.  I am alive.  I have to keep managing no matter what cause I'm worth fighting for. 

Behind every good cry is a lot of MAD......maybe the mad will help me fight this.  I may have to fight gently and carefully and quietly but don't discount the quiet fights........I've come along way since I got permanently benched in 2010 and I will do it again.  The reality is that I'm gonna have sadness, fears and worries......the reality is that I've got to push to bring people into my life.......since I have flares/crashes I get life going and then withdraw to heal......and when that happens my life stops, my new tentative friendships and links to the community stop too.  And that's when the alone hits --- that's when I am at my most vulnerable.  This awareness will help me sort things out past this new big bad storm......I have to believe that I can.  That I will, that I am worth it.