A life sentence

I never asked for an auto-immune disease. I never wanted to live my life as a sick person who can barely move or function. I really just want to be me again.
Last night Sonny and I drove for an hour just so I could have my first Sonic experience. And it was delicious!! We had the discussion over times we've had bad restaurant experiences. I relived some of the times where I was completely dissatisfied with the meal and the waiter/waitress argued with me, causing me to make a scene over the under cooked meal, etc. Things like that don't matter to me any more. Even if my food experience at Sonic had been awful, I wouldn't have said a thing. Why?? do you ask... Well, it's simple actually. I got out of the house. I spent an hour (two counting the return trip) on an adventure with my boyfriend talking and laughing. I did something. No matter the temperature of the food or how it tasted, it was a wonderful evening. I was not going to let my pain interfere, so why should an attitude ruin it?
I'm a lot more mellow than I used to be. I was always easy-going, but I was very out going too! Now I'm just stuck in this hell called Lupus for the rest of my life. Fibromyalgia alone would've been far more than enough, but nope...I got that and then some.
I just keep counting the spoons and the days until I get some medical coverage and am able to get myself on track with feeling half-way normal again. No, I'll never be the person I once was. But, building a new life isn't something I can do while I'm still going through so much. So, I just keep pushing myself way beyond my spoon rations and paying for it. I'm still not ready to give up my old life because I never wanted this new one.

Happy Birthday Sonny March 5th

Wishing a very happy 35th birthday to my prince sonnyshine skipper!!

After a very long night of not being able to sleep (on the 4th-5th) I finally got a 3 hour nap and tried my hardest to put on a brave face to go out to celebrate his birthday with some of his friends and old co-workers...one of which has the same birthday. I am currently running on negative spoons, so this was such a feat for me to overcome and brave the day. I showered bc it took less time, but it uses more spoons than taking a bath; so I had to skip shaving my legs and spending much time getting ready. I didn't really have the energy to do my hair, so I rocked the curls tonight.
I really overdid it though. We went to Buffalo Wild Wings, and were only there for 2 hours. But, to my body it felt like two eternities. My pain level tripled and my negative quantity of spoons quadrupled. I hate having to force a smile and act like I'm fine. Especially when I'm dying inside. But, after being so down and out for my own birthday last month...there was no way I was going to let Lupus deprive Sonny of a good 35th birthday.
But the night is winding down. I'm surfing facebook and playing those dang addictive games while he's playing on his xbox. Soon it will be snuggle time on the couch with my boyfriend and the heating pad to search for something on tv to help us finish unwinding and then we'll get some sleep. We're supposed to take Clay to the movies tomorrow/today to see Gnomeo and Juliet. I'm hoping I can find enough strength to do that. I miss out on so much because I'm sick. I'm tired of missing out on MY life. This just effing blows.

So, here's wishing that Lupus will take a long walk off a short pier and leave me the hell alone for a little while. I can't stand feeling this helpless and exhausted (not to mention the non-stop excruciating pain) any more. I just can't keep going like this. I need insurance so that I can get my health under control.

Wanted: Spoons; lots of spoons

Ever tried to force yourself past the pain and fatigue? I do every day. I know I shouldn't, but still I do it. And the consequences are fierce enough to scare any wild animal away...not Lupus though. That's a whole different breed of wild and crazy.
My lupus and fibromyalgia are untreated since I don't have any insurance. My pain gets so bad that my body trembles and I vomit. Not a pretty sight, trust me. I cannot get comfortable on the couch or in bed. I lay awake for hours on end waiting for my body to give up and go to sleep. It's hard to stay strong when the beast within (lupus) is just so much stronger than I can even try to be.
I know that I have no control over where my life path leads me; but I cannot imagine ever being mad or angry with God for my having lupus. I'm wondering though, Should I thank Him for it? I mean, I'm not thankful for being this sick, or being in this much constant pain, or even in this much financial demise from being disabled...but I'm thankful for being alive. It's no wonder I have so much mis-guided anger...I cannot blame God for this, but who do I yell at for it? Where can I lay the fault of this horrid disease? Lupus is: my body attacking itself...plain and simple. Can I be mad at myself? It's not like I wanted this; because I most certainly never wanted to have any health problems, let alone one that I can't even comprehend the magnitudes of pain and suffering it has reached in me.
My left jaw joint has been killing me for over 2 weeks. My neck glands are swollen. My shoulders are beyond pained. My hips are in such burning hellish pain that I can't begin to describe it. My chest feels like there's an elephant sitting on me, and it's making it so hard to breathe regularly. My neck is so tired and sore. My shoulder blades feel like they are being sliced. My thighs have hot irons running through them. I can barely feel my fingers. My biceps have vice grips on them. My calves are being drilled into the bones. When does it stop? Where does it end?

Winter blues

I'm tired of the pain. I'm tired of the fatigue. I'm tired of the worsening depression. I'm tired of just about everything. I'm so ready to get better and not be "the shell of the former me". I know that I have to re-invent myself since I'll never be the "old me" again. So, it's been quite a long resigning process for that. I still don't want to concede to the fact that I'll never be me again. I miss the lively healthy person I once was. Lupus has changed my life forever; and the only say I have in any of it is how I react to all of it. It's been so easy to just let Lupus defeat me, beat me down and take my body prisoner. Once I get on medicine for the Lupus and other issues, it won't be so easy for Lupus to do all those things. I am stronger than I think I am. I am a fighter and survivor. I may not have wanted Lupus, but now that I have to deal with it the rest of my life; I'm sure as hell going to show it whose really the boss in this body of mine.
I'm through with not knowing which way to turn. I'll just turn around and around until I find right way to go. It may be dizzying, but I will not let this get me down. With brain fog so thick, thinking is not always the easiest. I'll have to let instinct take over. My body still has a "self-preservation mode" in here somewhere. My body will fight to survive no matter how many wrong steps I take to get to a good destination. And yeah, I know this is a lot of random babble, but that's just the way it all feels right now. My brain is a locomotive; 5 miles long and chock full of randomness that will not cease. It's all jumbled up and floating out at infrequent intervals that cannot be controlled. As I like to call it "ADOB - Attention Deficit, Oooooh Butterfly".
Last Thursday Sonny took me out to dinner at Red Lobster for a combo celebration of sorts. Our anniversary was the 3rd, my birthday was the 4th, and then Valentine's Day was yesterday. We had both wanted desperately to go to this little Seafood Restaurant near our house, but we didn't realize they had changed their hours and were now closed every Thursday (despite the blinking sign on their lot saying 'Thursdays 2-10pm'. But, it was a great relaxing evening with my wonderful boyfriend.
Yesterday we ended up going to The Buttersburg Inn here in town to have an early dinner because neither of us could decide what we wanted from the pizza place for delivery. It was my first trip to the Inn, and I have to say that it was absolutely amazing. The food was great, the staff was awesome...and we had a great time all around.

Medical Coverage at Last

Well, I've been without medical coverage since June 30th, 2010. The third option for me was the MD PAC program, and I just got my approval notice today. I am so happy. This is some of the best news I could've gotten right now. Despite the problems with disability and with social services, I'm going to be getting better now. Just need to wait until I get my insurance card in the mail, and my MCO information packet. If I had the energy and ability to move properly, I'd be dancing all over the place right now. Time for me to kick Lupus' ass for once; instead of always being the one that Lupus is kicking around.
Ok. so a friend who has coverage through PAC program just informed me that the insurance covers prescriptions, but doesn't cover specialists or hospital visits. So, I guess I won't be getting my Lupus under control anytime soon. But, at least I can hopefully get back on my depression and anxiety medications. That will help a great deal. I'm just hoping my primary care doctor gives me the meds without making me see the psychiatrist again. Especially since specialists aren't covered. I didn't like the psychiatrist she sent me to anyway. He was kinda weird. I guess you have to be in that line of work though, right?

Sleep, read, sleep, read

I'm trying my best to recover from my horrible "massively worse flareup" last week. All I've been doing is sleeping, reading, sleeping, reading. I'm so tired and so sore. The pain killers didn't work. I've been snuggled up with my heating pad for days. I'm starting to think the relationship is getting too intimate for me. It's almost like I'm cheating on Sonny...lol. I'm not!! Don't worry. I'm keeping sane; well as sane as I can be considering how much I've gone through.
Well, I kept waiting to see if SSA would make a determination after they received the dr report on the 1st. Nope, got a letter in the mail notifying me of my next exam/evaluation for the 21st at 2pm in Westminster. I cannot believe this is happening. The 21st marks the 7th month since my date of application. What the hell am I to do? I'm suffering and only getting worse. I can't take much more. I'm losing strength to fight against all the pain. I just don't know how much longer I can do this before I snap. This is the hardest and worst encounter to survive thus far in my 31 years.
I'm going back to bed. I don't even feel like blogging. I was just trying to get out of bed for a little while. It's useless though. I hurt too bad to type.

ER trip

It has been a rough and very painful week. And today is Sonny & my one year anniversary. So of course I ended up needing to go to the ER for some pain management after a slight slip (not fall) on some ice getting out of his truck. It was horribly painful, and I tried for hours to simply ignore it and hope that it would go away, but it was a major spike of my flare-up. Today was the first time I had allowed Lupus to completely defeat me. It finally beat me down hard enough to land me in the ER for drugs. Any other Lupie I've talked to is on medications for controlling their symptoms and flare-ups. I find it hard to believe that I am strong enough to have kept myself mentally separated from the pain as long as I have. Its been 14 months since I first started experiencing unbelievable pains from my health problems. I had always thought that I have a high tolerance for pain...but this is a whole new level of chronic pain I never thought would get thrown my way. Growing up, I witnessed chronic pain tear apart my second mom Ina. She popped pain pills like tic tacs at times. I comforted her often when the pain was so severe that all she could do was cry and rock back and forth praying for death. I never thought I'd have to experience that kind of pain. I'd been through a lot of very bad pains bc of various other health issues, but nothing; absolutely nothing compares to what Lupus has brought into my life. Last night I was fighting back tears, had dry heaves, was rocking back and forth; my whole body shaking from pain....and yes, I was praying for death.
The morphine and Torb helped minutely, and the anti-emetic helped calm my stomach. I was sent home with an RX for percocet and Skelaxin (bc Flexeril doesn't work near as well for relaxing my muscles). Sonny has helped me realize that I can't keep digging at the bottom of the drawer and borrowing future spoons; it will only lead to my body inevitably hurting itself worse. Looks like I'll be spending most of the next 3-4 weeks in bed and only doing as much as my body will allow me to. It warms my heart to know that I have someone so loving, caring, supportive and understanding in my life when its truly needed. I couldn't imagine my life without him in it. And, he said he'll have to do the housechores that I can't handle while my body catches up on the resting that it so dearly needs.
I'm certain that I am going to get extremely bored in the next few weeks. But I also know that I really do need to start listening to my body more. I cannot keep thinking that I'll ever return to being the person I once was. This is me...and like it or not, I have to live this way now. It took him saying it for me to realize that he loves me despite the Lupus. He knows most (if not all) of my limitations. He understands that I'll have more spoons on certain days, and way less on others. He knows there will be times that I will just have to lay in bed for a few days to rest so my body can rejuvenate itself.
I couldn't have dreamed up a more perfect soulmate and partner than what I've found in Sonny. He is absolutely wonderful to say the very least. Haha....inside joke here, but I have to add: What's the very most? The most; well, he's is everything and more, he is by far the most stand-up man I've ever met. He's a wonderful single dad (who has custody) who would do anything in the world for me. He's my imperfectly perfect other half. And I love him so very much for getting me through the toughest year (and also the best year thus far) of my life. God may have given me Lupus, but he also gave me Sonny at the same time. He knew what he was doing. And I'm so glad that I have Sonny in my life. There are so many wonderful reasons for me to be in his life also. Not only for him, but for his awesome 9yr old son. Clay is such a great kid. I've grown to love him as though he were my own. I feel very protective over him, and I couldn't bear to see him hurt. And it makes me happy to know that although I cannot have children; I still do in a way have a son (in the near future).