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.
Wednesday, February 16, 2011
Friday, February 11, 2011
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?
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?
Wednesday, February 9, 2011
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.
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.
Thursday, February 3, 2011
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).
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).
Monday, January 31, 2011
Go away Mr. Monday
I'm still trying to recover from last Monday's adventures and we have things to do today.
Saturday night, I managed to force myself to go out to Buffalo Wild Wings with some great friends. A much smaller group than last Monday. I decided to have a couple beers to help drown the pain and to help me sleep. Well, I ended up sleeping until 6pm yesterday. It still didn't make up for all the fatigue unfortunately. But it was nice to spend another day in bed - instead of being awake and miserable with the chronic pain.
Today I'm going to pick up the books I reserved at the local public library. We're expecting a 30 inch + snow storm on Wednesday, so I want to be prepared just in case the cable and internet go out. I hate this weather and how much it's doing to my poor little body. I just keep waking up with less and less spoons each day, no matter what I do or don't do. It's disheartening to say the very least. Lately I've been waking up with sporks and slotted spoons, and they are completely useless.
This morning I had cereal for breakfast (I haven't had an actual breakfast in a long time) and it was too good to be true. Not long after, I ended up heaving it all into the trash can. I just cannot stand all this nausea and vomiting. Plus, the glands in my neck are swollen again and my throat is sore. Also have been really dizzy and extra tired. I'm worried that mono has come back to visit yet again. I am so sick of mono. And without medical insurance, I can't go check to be sure whether it is or not. :-(
I'll check back in later after we've finished our errands and such. Here's hoping I find extra spoons along the way today.
Saturday night, I managed to force myself to go out to Buffalo Wild Wings with some great friends. A much smaller group than last Monday. I decided to have a couple beers to help drown the pain and to help me sleep. Well, I ended up sleeping until 6pm yesterday. It still didn't make up for all the fatigue unfortunately. But it was nice to spend another day in bed - instead of being awake and miserable with the chronic pain.
Today I'm going to pick up the books I reserved at the local public library. We're expecting a 30 inch + snow storm on Wednesday, so I want to be prepared just in case the cable and internet go out. I hate this weather and how much it's doing to my poor little body. I just keep waking up with less and less spoons each day, no matter what I do or don't do. It's disheartening to say the very least. Lately I've been waking up with sporks and slotted spoons, and they are completely useless.
This morning I had cereal for breakfast (I haven't had an actual breakfast in a long time) and it was too good to be true. Not long after, I ended up heaving it all into the trash can. I just cannot stand all this nausea and vomiting. Plus, the glands in my neck are swollen again and my throat is sore. Also have been really dizzy and extra tired. I'm worried that mono has come back to visit yet again. I am so sick of mono. And without medical insurance, I can't go check to be sure whether it is or not. :-(
I'll check back in later after we've finished our errands and such. Here's hoping I find extra spoons along the way today.
Saturday, January 29, 2011
Really?
Yesterday was a day full of horrible adventures.
10:00am Sonny's mom slipped on some water on the basement floor and landed on her right side, injuring her shoulder and ankle pretty bad. We were at the ER with her from 11am-2pm. Thank God nothing was broken or fractured!! She's bruised up and she sprained her shoulder and ankle. She'll be wearing a wrap and air cast on her ankle, and will be sporting a sling for her shoulder. She's very lucky that she didn't hit her head on the concrete floor.
So, with having yesterday start off low on spoons, I ventured through the ER fiasco and did 3 loads of laundry and tried to tidy up a bit. Went to bed at 10pm since Sonny had to work late.
And, today - well, today started at 2am when Sonny got home from work. I love that he kisses me when he gets home from work! I also love that he hung up a load of laundry for me and put the last load into the dryer for me since I fell asleep while it was running. But, alas sleep eluded me after he got home and I'm not sure why. I'm so dog-ass tired and just need some rest. I laid in bed until 7am hoping and praying to fall back asleep. At least my body got an extra 5 hours of rest (which isn't really resting when you're rolling, tossing and rocking the pain away).
So, I've made myself a pot of coffee and am praying for a miracle to happen. Luckily Sonny's mom is ok this morning and doesn't need any help with anything yet. She didn't sleep well either, but she did get rested so that's good.
Lately, I've been trying to put into words what I'm going through physically, and although I still can't quite explain it I've managed to write some of the feelings down as best I could:
Scattered thoughts and shattered dreams
Throughout my body the pain just screams
Raking razors along the bends
Sticking knives in with no end
Burning aches that last for days
Walking around in such a haze
Griping pain stealing breaths away
11:38am update:
Well, I've mostly finished all the laundry (I have one load left to hang/fold). I made breakfast, did all the dishes, made the bed, got dressed and I'm totally running on empty again. I may have to vegetate for a few hours in the recliner watching tv and praying to catch a nap.
I've got a really cool idea brewing for some necklaces. I'll have to wait and see if it will pan out before I spoil the surprise though. I'm enjoying the idea of small hobbies that I can handle and that people can help with if they are able. I'm blessed with some pretty outstanding friends! ;-)
10:00am Sonny's mom slipped on some water on the basement floor and landed on her right side, injuring her shoulder and ankle pretty bad. We were at the ER with her from 11am-2pm. Thank God nothing was broken or fractured!! She's bruised up and she sprained her shoulder and ankle. She'll be wearing a wrap and air cast on her ankle, and will be sporting a sling for her shoulder. She's very lucky that she didn't hit her head on the concrete floor.
So, with having yesterday start off low on spoons, I ventured through the ER fiasco and did 3 loads of laundry and tried to tidy up a bit. Went to bed at 10pm since Sonny had to work late.
And, today - well, today started at 2am when Sonny got home from work. I love that he kisses me when he gets home from work! I also love that he hung up a load of laundry for me and put the last load into the dryer for me since I fell asleep while it was running. But, alas sleep eluded me after he got home and I'm not sure why. I'm so dog-ass tired and just need some rest. I laid in bed until 7am hoping and praying to fall back asleep. At least my body got an extra 5 hours of rest (which isn't really resting when you're rolling, tossing and rocking the pain away).
So, I've made myself a pot of coffee and am praying for a miracle to happen. Luckily Sonny's mom is ok this morning and doesn't need any help with anything yet. She didn't sleep well either, but she did get rested so that's good.
Lately, I've been trying to put into words what I'm going through physically, and although I still can't quite explain it I've managed to write some of the feelings down as best I could:
Scattered thoughts and shattered dreams
Throughout my body the pain just screams
Raking razors along the bends
Sticking knives in with no end
Burning aches that last for days
Walking around in such a haze
Griping pain stealing breaths away
11:38am update:
Well, I've mostly finished all the laundry (I have one load left to hang/fold). I made breakfast, did all the dishes, made the bed, got dressed and I'm totally running on empty again. I may have to vegetate for a few hours in the recliner watching tv and praying to catch a nap.
I've got a really cool idea brewing for some necklaces. I'll have to wait and see if it will pan out before I spoil the surprise though. I'm enjoying the idea of small hobbies that I can handle and that people can help with if they are able. I'm blessed with some pretty outstanding friends! ;-)
Friday, January 28, 2011
Sucks trying to recover
Still trying to recover from my Monday. I slept all day Tuesday, some Wednesday, all day Thursday and I'm thinking that today will be another day stuck in bed. I have no energy and everything hurts so bad. I just wanna scream. I've forced myself to get up at least a couple times a day to drink and attempt to eat. But, my nausea is getting way worse. I just ate some pretzels. I hadn't eaten anything since a couple pretzels on Wednesday night. I'm hoping that this pain and nausea go away. There's like 10 inches of snow outside though, so chances are slim to none that I'll get any relief soon.
Clay has been off school for the third day in a row today. I'm sure he's loving it more than words can say. I just wish I were feeling good enough to play with him. I hate seeing that sad little face of his when I'm feeling worse than usual.
Clay has been off school for the third day in a row today. I'm sure he's loving it more than words can say. I just wish I were feeling good enough to play with him. I hate seeing that sad little face of his when I'm feeling worse than usual.
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