Tuesday, March 29, 2011

Making my lists...checking them twice

Well after waiting so long for insurance, it has arrived...along with renewed anxiety over doctor appointments and diagnoses.
My Lupus was merely a pseudo-diagnosis because my Rheumatologist refused to do all the diagnostic blood work properly. She confirmed that I do indeed have an auto-immune disease that seemed to be well on the path of becoming SLE. the other doctor I saw in Pennsylvania said that based on my labs and symptoms, it was definitely SLE, and maybe some other things as well. After so many other problems already uncovered, how much else could there be?
Chronic fatigue - check
Fibromyalgia - check
Auto-immune disease - check
Epstein Barr - check
Systemic Candida - check
Vitamin deficiencies -check
Anemia -check
Depression -check
Anxiety disorder - check

So, since I'll be seeing a new primary care physician, I've been working hard making lists of health problems, symptoms, medications I should still be on (but haven't been due to lack of insurance), etc... I find myself going over these lists time and time again trying to remember what else I really need to add. I remembered that I should make a list of all my surgeries and procedures so that my new dr knows what organs I'm missing, what past procedures have revealed. So now I'm looking at yet another list, because I should give my new dr a list of all the specialists I've seen, and let him know the ones I'll need to see again; such as my gastroenterologist. My GI dr is amazing. I hope he accepts my new insurance as well. I can't imagine finding a whole new team of professionals for my health care. But, I will do what's necessary in order to make progress with my health problems.

My anxiety over doctor appointments is unreal. I hate the feeling of not knowing what's going to happen, or how many vials of blood the doctor will make me give up for lab work each visit. I hate the look I get each time my weight drops and my doctor lectures me on gaining weight back. I know that my old doctor did those things because she genuinely cared about my health. I wonder if my new doctor will just think I'm anorexic or bulimic or something.

Well, it's time for me to get back to my lists. And it's time for me to rally some motivation to get some real food into my stomach. After sleeping most of the day, I've worked up one helluva appetite...and the pretzels just aren't cutting it! They do however help when I'm as nauseated as I always am.

I will be back eventually with more random ramblings about things that are traveling through my mind at the speed of sound.

Hugs and spoons to all of you!

Friday, March 25, 2011

Frustrated and Annoyed

Being at the end of your rope doesn't mean you have to hang...
So what do you do when you find yourself there?
It feels like I'm on the verge of snapping at any random person on a constant basis recently. It takes a lot for me to keep my attitude in check. I try so hard to return to being my carefree, patient, sweet and healthy self, but it's not so easy with everything that is going on in my life. It's not like I'm no longer sweet... That's not the issue. I just get irritated so easily at the silliest things lately.
Whenever I apologize to Sonny for being whiney or complaining too much, he always reminds me of the fact that I'm actually not as whiney as most people would be in my situation. He tells me all the time that I'm handling everything with admirable (I think that's the word he used) strength. I love how encouraging and supportive he has been throughout my illness; since I started getting sick at the same time he and I started hanging out.
I try to remind myself every day of how far I've come, and how much I've overcome on this rough path of 31 years. I've seen and endured some very bad and painful things in my life thus far, and it's not even close to being over.
But I've figured out what happens when the rubber band finally gets stretched too far and "SNAPS". You just tie the ends into a knot and let life repeat the cycle of stretching it. Sure, it won't stretch as far before snapping next time...but it does give you hope that things come full circle and all will eventually work out.

Thursday, March 24, 2011

Sick Puppies rescheduled due to artist illness - LMFAO

We had planned on getting a bunch of things done today, but as usual we were both tired beyond belief. Upon waking up, we found out that the concert we were to attend tonight was rescheduled (to see Sick Puppies at Rams Head), due to - GET THIS - Artist Illness. How ironic is that?

So, we decided to have a well deserved date night instead. We went to Chipotle for dinner, then to Maggie Moo's for ice cream and to the movies to see Unknown. It was a wonderful date night...ending with coffee from Dunkin Donuts.

In a way, I'm so relieved that the concert got rescheduled. I'm limping pretty bad right now. My left hip is all jacked up, and so is my left knee. Plus, I think I may have re-broken the big toe on my right foot. It's been a torturous pain-filled day. But, I got to spend it with my prince and that's always a bonus.

We've been talking a lot lately about our future together. He asked me a few days ago if I'd mind picking out my engagement ring when it comes time for that. I was awe-struck and my heart jumped into my throat. It takes a lot to leave me speechless, but this did it. I had jokingly told Sonny a few months back that I didn't care if he proposed with a ring pop, so long as he would one day be my husband. He was fine with that idea because it's the much cheaper option lol.

So even if my body is against me in this journey, I have all the strength and love I'll ever need - right next to me...holding me up (literally and figuratively) and encouraging me along this little path. I love him so much. I can't thank God enough for sending me this angel into my life when I needed it the most. And one day I'll be his wife, and the step-mother to his wonderful son.

My health problems may have taken away a great deal from me...but the part of me that's still in here is so totally amazing. I'm blessed and I'm so happy that things will be getting better and better...and soon!

Tuesday, March 22, 2011

Forcing a Good Day to happen

Woke up at 8:00am with no spoons..par for the course on a Monday. What's the cure for this?? As always, I push myself far past my limit because that's my m.o. But it was a beautiful and sunny Monday!! A light breeze with a high of 63 degrees expected. I wanted to have a good day!! It's long overdue!
**I'm leaving out a lot of grumpy, snide remarks that I made throughout the day...

I have promised myself a haircut since October, and I was bound and determined to see it through. Hey, I'm on Percocet, so I must be invincible...right!? Wrong!!

How my bad day turned good:

Called the salon and scheduled an appointment with my stylist Patty (who is also a very close family friend). I hadn't seen her in over a year and a half. She lost her husband last month to cancer, and I couldn't make it to the funeral because of the weather and my heightened pain.

Dragged my tired and sore self up the stairs to the bathroom so I could shower and get dressed. I skipped doing my hair and make-up because I knew I was in for a very grueling day; and I'd be exhausted enough without doing these things.

Went to lunch at Lintini's with Sonny before my hair appointment. It was a nice quiet lunch. Lunch completely screwed up my stomach since I was still nauseated (as per the usual).

Got to the salon and surprised Patty. She knows me as "Bear" (my nickname), so seeing Amanda on her schedule wasn't any indicator for her lol. She waxed my brows and trimmed away all the dead ends from my mop of hair; and evened it all up since I had attempted a slight trim by myself a few months back. We chatted and got caught up on the family "goings-on". It was so wonderful to see her again. I felt emotionally better after going to the salon. I felt prettier than I have for quite some time. It was a wonderful feeling.

We stopped by Dunkin Donuts for my daily cup of joe. The Dunkin Donuts in Frederick (both of them) seem to have better tasting coffee than the one in Westminster does. So, it's always an extra special treat to get a cup in Frederick.

After we got home and since it was such a beautiful day outside, Sonny wanted to clean out the inside of his truck. I wanted so desperately to be able to help him. Despite the pain and exhaustion, I decided that simply sitting in the truck talking to him would be help enough. Then we drove to the car wash place to utilize the industrial vacuum to get all the crud off the floors and seats. I sat idly watching him work. It actually made me more tired just watching him.

Then he wanted to armor-all the interior, so I just sat in a chair (in the shade of course) and watched him.The birds were singing, clouds were floating by... It was so perfect outside. And after Sonny was done with the truck, I made sure I pointed out how perfect the day seemed to be. His response melted my heart, "Every day with you is a perfect day." I love that man so much.

Up to the bus stop to get Clay off the bus after school. It was a rough walk for me, but I wasn't going to let anything get in my way today no matter how bad it hurt. It didn't matter that it was only 3:20pm and my whole body was screaming, "UNCLE". I had to do this.

As promised - after homework, the three of us drove up to the basketball court for the guys to shoot some hoops. I sat on the sideline shouting encouragement as my guys laughed and played "Around the World." I took some pics of them while they were playing. This wasn't the first time that I was literally AND figuratively watching my life from the sideline. At least this time my "sideline" was in the sunshine!

Then Sonny wanted to take his first Harley ride of the year, and I desperately wanted to go. I had just gotten my new helmet in the mail the other week, and wanted to feel the breeze on my face. So, I sucked in the pain and trudged forward. It was a nice ride despite all the pain that ensued. I really am anxious for the sissy bar to be done so I don't have to rely on my legs and arms to keep me on that big beast of a machine. We only went about 6 miles, but it was so relaxing in so many ways. I could barely walk when we returned home, but it was worth it. I can't wait to feel better so that I can enjoy these rides more. I miss out on so much because I'm sick.

Then back home for my guys to play some video games and for me to try to relax a little bit. Got changed and put on my make-up since I was losing that "pretty" feeling. Living with dark marks on your cheeks and jawline isn't exactly the sexiest thing in the world (plus the dark circles and bags under my eyes from being sick).

Left the house at 6:30pm to head to bowling league (Sonny's on a league every Monday). I was in a world of hurt, but blazed a trail through the pain to accomplish my "Forced Good Day." Sonny had a 609 set for the night. Mondays at bowling are usually my only "probable guarantee" on getting out of the house once per week. (Up until last week, I had gone every Monday night for a few months despite the pain - just to get out of the house). I always enjoy the company of his bowling team. They are so nice and easy to talk to.

Back home by 9:30pm to start winding down for the night. Clay played some video games until it was bedtime. I settled in here at the desk to try and collect my thoughts for this blog. Also, I wanted to catch up on facebook statuses since I haven't been as good lately about reading the goings-on of my friends.

I put away two week's worth of clothes that had to be hung up in my closet...wincing in pain the whole time.

Organized the clutter a little bit, and tried to get the soda cans under control once again. *Soda cans are my arch-enemy...especially when they sit around half full and multiply as the days pass by while I watch them.

I managed to strip the bed linens and get them into the washing machine. Then, into the dryer. Sonny helped me make the bed (which is the first time in my life I've actually asked someone to help me make my bed). Yes, I'm in a hellish torturous pain at this point. I'm wishing it were time to take another Percocet. I know I've pushed myself into another "Uber flare-up", but I don't care.

So, it's a little past midnight right now. I have survived my "Good Day"; just barely.

Although today wasn't perfect, it still kinda was. I mean, I realize how brave I really am. I realize how strong I really am. Making it through a self-inflicted day of hell gives me hope for life with lupus. I truly do believe that things will be easier once I'm fully diagnosed and on treatments from the doctors.

Spring time: The part of the year where my pain is supposed to decrease (yet has greatly increased). Spring time: a fresh beginning full of hope (and oh how I need this fresh beginning). Spring time: a bird singing praise for a beautiful day (and that's why I'm here trying to encourage myself through simple daily activities).

I wish all of my fellow "Spoonies" a Spring time for a lifetime. Wish you pain-free days, hope for a fresh start, and encouragement to "make" a good tomorrow.

Monday, March 21, 2011

Not as bad as they thought

Friday night, I pushed myself passed my limits (as always). I went to the RockBand party, and spent some time with friends. Right after returning home, I started vomiting...then dry heaving. Within a half hour my chest was tight and burning and my side was killing me. At 730am Saturday I went to the ER to see wtf was going on.
When you have chest pains, they treat you a lot different at the ER. Barely any wait, bring the xray machine to the room, etc... I wasn't concerned about waiting. I was worried about what could be going on. I'm used to nausea and vomiting; just not to having blood specks in my vomit. That was a new twist for me. So, the nurses hooked me up to a heart monitor, gave me oxygen, took a lot of blood, made me pee on a bed pan for them to test my urine. Ugh, it was a three ring circus in that room. Then they brought in the mobile x-ray machine to get an x-ray of my lungs. The doctor said my heart seemed fine, but he was concerned that I may have a blood clot in my lung, or I could have pneumonia. Or, it could just be something simpler. The nurses brought in the mobile x-ray machine and took a chest xray to see what was going on. They gave me Phenergan and Delaudid to keep me cozy while they were waiting for the lab and xray results. After a long day, it was helpful to relax me some and to off-set the majority of the pain.
After all was said and done, I found out that I've had bronchitis for a while and now had a UTI. So the doctor gave me prescriptions for Percocet, Phenergan and Bactrim.
Even without having my insurance card in hand, the ER and the pharmacy were able to use my medical insurance number to process everything. I'm so happy that things are finally starting to come together a little at a time.

And since today was an extra special kind of weird, I'll post today's adventure tomorrow (if I'm recuperated by then). TTFN...

Friday, March 18, 2011

It's Kicking My Ass

So, as the pain and symptoms are worsening instead of improving I'm finding myself trying harder to accept the reality of my situation. I have horrible diseases/illnesses that are wreaking havoc on my body and there's not a thing I can do to stop it. My hands are tied at this point. My right arm and hand are getting harder to move (feels very very heavy), and my left knee is giving me problems now. I feel like I'm going to fall apart.
How does one go about accepting all this? How can I look at myself and still see me in here somewhere? Amidst the scars, the pain, the tears and the frown...
My request to my body is simple. Please just behave until the medical insurance card gets here and I get to the doctor for some medication. That's a simple request. But my body isn't allowing it. Not in the least. If anything it has amped up the pain and fatigue to new levels of hell I never thought existed. Every breath is a chore. I can't lay down, I can't sit up...I'm just screwed. So I'll just sit here at the computer and wait for my body to  give in or give up to the pain and the fatigue.
All I hope to accomplish today is getting my bath, shaving my legs, taking a long nap and going out tonight to enjoy time with friends at the Rock Band party DM is having at his house.
I can't keep pushing myself this hard forever though. And I do get tons of rest. So why do I not feel any better ever? I can barely see through the fog around me in my sick lupie life. I can't think straight through it either. I'm just lost in here. It's horrible.
If I can't see me anymore, does that mean that other people can't see me in here anymore also? I hope that's not the case. I'm going to fight this with all I've got. I have to find my way out of here. I just have to!

Wednesday, March 16, 2011

Leaning towards progress

I want progress in my life. I want to set some goals, make the plans to get me to them, and then to make them happen. I don't want to be stuck in the same abyss forever. This disease has held me back from progress for over a year...and I'm sick of it. I'm sick of watching life pass me by as I'm laying on the sidelines.
So, my goal today? Start making a list of things to accomplish and piecing together the plan to make them happen. It will be an on-going process, but at least I'm finally starting it. I can go at my own slow pace and never have to worry about anyone questioning me on it; because after all this is MY life and God is the only one I'll have to answer to in the end anyway.
I want to feel free from the burdens of being sick, tired and in chronic pain. I want to be relieved of the stress and worry that have entered my life because of my health problems. I just want to figure out who I am, and love myself no matter what. I haven't loved myself for a while now. How can I possibly love a broken down shell of the former me? It's not easy. I don't even like me anymore; so to heck with being able to love myself.
But, once I figure out who the New Me is, I'll be sure to introduce her to all of you (well, the couple of you that read this).

Sunday, March 13, 2011

Kidnapped Myself...

In a way my body truly has taken itself hostage. It has pulled itself away from those who love me, and those who I love. I'm chained to the bed or the couch for the most part. Hidden away from the world, with infrequent cameos as proof of life to everyone. Yes, I'm still here, but I'm not the same person as before the "kidnapping". There is no ransom demand. My health issues want to see me holed-up and in misery for LIFE, and not a moment less.

So, how do I negotiate with an invading terrorist; when that terrorist is my immune system? Oh, go to the doctor? Sure, without insurance that's so easy! I'll get right on that! I don't want to hear the random suggestions anymore from those who have absolutely no idea what I'm going through.
"Drink a hot cup of tea and take a walk" - If a walk were all it took, I would've been cured last Spring when I was on painkillers and could still walk properly! But, apparently walking isn't going to cure my health. Thanks anyway.
"I heard about a couple amazing herbal supplements that would help with (xyz) problem" - First, I have about 26-35 bottles of supplements that I have tried on faith. My stomach doesn't like supplements at all because I don't have a gallbladder, and I've only had worse problems from attempting to listen to random research advice from people who are not licensed medical doctors. So, why don't you take those supplements and tell me how you feel after loading up with the suggested dosage on a daily basis for just a week? Yup, that is going to be somewhere between 30-60 tablets + per day. Have fun!! Enjoy the nausea and vomiting that it will cause you.
"Isn't there anything your doctor can do to help you out?" - Yes, there is...but I wouldn't know since I haven't been to a doctor since last June before my insurance lapsed after I lost my job. If I had a loaded savings account and didn't need insurance, I'd be at the doctor's in a heartbeat. Or are you offering to pay my doctor's visit and medications cost? Because that would effing rock!! Thank you. ;-)

This hasn't been the easiest week for me. Instead of getting better as Spring time neared, I've actually felt worse. More pain, more fatigue...but so much pain that I cannot sleep well or regularly. I'm so worn down physically, mentally and emotionally.

Saturday, March 12, 2011

What a Friday

So, yes as expected I received the Disapproved Claim letter from the Disability Board on March 3rd. I spoke with a very nice lady (Eva) at Joan Birmingham's office today. Joan's a disability attorney who used to be a nurse. I was very pleased with the nice experience I had with them over the phone. And Eva was very professional and courteous. Way better experience than I have been having with phone calls lately. She's mailing me paperwork to sign and return to their office. Apparently, that's all I have to do! How easy is that? It's a relief in this lupie mixed up life of mine lately. I won't have to worry about filing out the health information online for the appeals request. And, I just have to send them any new medical information that comes up once I get my insurance and start going to appointments. I'm pleased so far, let's see if it continues to go well for me.

On another front, I left a message today for the Collections Manager at the Credit Union. I'm not sure if I have talked about this issue before. I received a letter today from court pushing my court date back from April 15th to May 9th. The credit union that held my auto loan is taking me to court over the balance left on my accounts after the repossession and auction of my Ford Escape. I was fired from my job June 8th of last year due to excessive absences. I haven't had a single job since then. My auto loan had the disability clause on it, but the representative that I often spoke with refused to send me the information for it in July or August, claiming that the disability clause would not work since my loan payment was now past due. My sister contacted CUNA (Credit Union National Assoc - I think that's what it is anyway) and they informed her that any mention on my part of a disability should have immediately prompted them to mail the information to me to get it all settled out...and that they could past date any disability claim to bring my loan up to date.

Lupus, quit taking away my sanity. I'm in financial, emotional, physical and mental ruins here. Just leave me alone and let me get back to a decent life (That's right, I did NOT say normal). I just want to live without the constant anxiety over all the collection calls, impending doom and world of the unknown in this horrible disease.

Friday, March 11, 2011

The skinny on my medical coverage

So, yes I received my approval letter from the state of Maryland on the 8th for medical assistance.
To quote the approval letter:
'Based on your application dated XXX, you are eligible for Medical Assistance effective 10/01/10. Your period of eligibility is from 10/10 through 09/11.
You will receive a Medical Assistance card for each person listed.
Most people eligible for Medical Assistance must be enrolled in HealthChoice, a managed care program. If you must enroll, you will receive information by mail which will help you select the best Managed Care Organization (MCO) for you and your family. If you would like to receive information about HealthChoice right away, you may call 1(800) XXX-XXXX.'
So, ladies and gents - would you want to wait to get the information, or call to get it "right away"? I wanted it right away!! I've been without health insurance since the end of June last year. I've been a mess of pain, health problems and depression rolled up in anxiety attacks the size of Lake Anna.
So I called them to get the provider's list, information on prescription coverage and to see when I'd get my insurance card. The lady I spoke with was very polite and friendly (I was shocked to get someone courteous - this should've been a clue). I am NOT in their computer system. She was very empathetic and gave me information to pass along to my DSS case manager so as to expedite my being put into their system. "I'm not in the XXXX System, and my case manager needs to do Form XYZ and fax it directly to XXX-XXX-XXXX".
I immediately called my case manager and left her a voice message (as per the usual) stating everything the lady told me; and I asked her to kindly give me a call back (I have questions over how much longer this is going to take). That was 810am... I heard nothing back from her today.
I asked a friend who is on the medical assistance program if she remembered how long it took her to receive her information and insurance cards after getting the approval letter. She said it took 3 weeks, and then an extra 10 days to get the selected providers approved for visits. So, I'm now looking at another month of waiting. How much patience can they possibly expect from someone with chronic pain? This is just beyond ridiculous. I'm stressed out and ready to just fall apart and break down.

Run your fingers through my hair?

I miss being able to run my fingers through my hair. I now have to worry about how much hair is going to fall out just from trying to smooth out my hair. The curls don't make it any easier since they cause tangles that need to be tugged on at times. Funny thing is; I already had a bad nervous habit of pulling out random strands of hair when I was bored or completely stressed out. I've stopped that for the most part now.
I take a bath and have to clear the drain two to three times while the water is draining out. It's a good thing that I started out with thick hair. I shouldn't be experiencing any major "thinning" for quite some time. I just have to keep avoiding the hair brush, and stop running my fingers through my hair.
It's crazy that for years I never brushed my hair. I'd just wash it, throw in some product and rock the curls all day. And, I never thought twice about doing that every single day for years (unless I straightened my hair).
Hell, I miss being able to shower every day. I miss showering at all. It's mostly just baths now. And that's not too often anymore. It's like two to three times a week, and it exhausts the hell out of me. I shave my legs every couple weeks....how lovely that will be come summer time.

Wednesday, March 9, 2011

So tired

I can't think straight. I am just to tired to function. I have a crap ton of things to do, but no energy or motivation to get them done during "business hours" because I sleep during the day. This stinks!!
Well, tired or not; my pain is too intense to sleep right now. I tried for 2 hours to fall asleep, but I didn't want to risk waking up Sonny with all the rolling & tossing.
I've been doing some research on tablet pc's and have found that I really, really, really want the original Apple iPad...not the new one that's coming out soon. I'm sure the price will come down from $399 once the iPad2 hits the shelves in a couple days.
Gosh, I didn't realize how exhausted I really am. I'm sitting here attempting to type (constantly having to use the backspace for major errors) and my screen is slipping sideways and going funny on me. Well, not the screen really; but my eye sight is definitely going goofy right now. Blah. I don't know how many more weird symptoms are going to pop up, but I'm through with them!! Hell, the pain is enough...add in that I smell sulfur on a constant basis now...and it's all just too much to handle!
Okay, I think I've given myself a headache from staring at the screen trying to type properly.

Tuesday, March 8, 2011

Medical Coverage...for real this time!

Well, the state of Maryland finally approved me for medical assistance. I got my approval letter in the mail today. I still have to contact them about getting a list of approved doctors, and find out about the prescription coverages, get my insurance card, etc... But this is such great news. I have been without insurance/medical coverage since the end of June last year. I am swimming in a world of pain, lost to myself.
So, now I can make plans to see my doctor and get back on all the meds I should be on. Mainly pain management and anti-depressants. I need to see when I can get to the rheumatologist's office and get on track with helping me through this auto-immune hell. I don't want to go to the rheumatologist I had before though. She was a nightmare. She had no empathy for what I was going through...and just wanted to run the same test (an ANA) over and over again; rather than doing the other tests to confirm my lupus. She only once tested my RNP count to see where it was. She never once wanted to do the Anti-Smith antibodies testing, or any of the urine testing to confirm other issues (kidney problems that I've had for a few years now). It's like she just didn't care. She talked in circles and made me feel stupid and a waste of her time. If she thought my symptoms weren't real, why did she send me through physical therapy and pain management? I wish I had gotten the chance before to start the pain management that the pain doctor wanted to start...but insurance lapsed and I spent the next 8 months in writhing pain.
This is no way to live! I don't want to live my life based on how my body is attacking itself. I want to live my life for me. I want to enjoy doing things again; even if it's not the same things I used to do. Sure, it would be awesome to be able to go hiking and canoeing again; but I doubt I'll ever be able to do those things again. Never again will I be able to go skating for hours on end, or play ball.
But, this wonderful news of approved health care is a big plus in my book! I thank God for giving me the strength to make it through this intact. And, I can only hope that things will continue to improve in my life and my health. I'm thankful for my family and the numerous friends who stood by me through all this and always gave their support and encouragement.

Monday, March 7, 2011

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.

Sunday, March 6, 2011

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.

Tuesday, March 1, 2011

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?