Saturday, July 23, 2011

Setbacks aren't always a bad thing

So, I just keep trying to keep positive about all the crap I've had to deal with since getting sick. All the "two steps forward, ten steps back" shit is really getting old though. But, in getting setback my doctors can better help me move forward eventually. I just have to keep optimistic about all this.
It's not easy to be my old optimistic self lately though. Through the constant vomiting, and then the vomiting blood; the chronic aches and pains; and especially the fatigue that is far worse than it ever was before.
I've been pushing myself harder and harder to accomplish things throughout my day, instead of staying in bed like my body wants me to. I may end up paying for it in the end, but at least I have something to show for it!!

So, I bathe even when I really don't have the energy for it; I do laundry once a week; I attempt to make the bed every day; I stay on the couch instead of in bed most days; and I'm crocheting a new blanket for the bed. All this plus spending time with an energetic nine year old!! I'm trying to do all I can, and although it's killing me; its also very worthwhile in the end. It helps boost my self esteem back up almost to where it was before. I don't feel like such a worthless schlub every day.

Thursday, July 14, 2011

It's been a while

It's been quite some time since I've been on here to let you know how things are going. It's been a busy and crazy summer so far.
Clay had a trip to the ER and we found out he had mono. This was literally days before he left for a 3 week camping adventure in upstate New I was frantic and worried.
And joy of joys, Sonny proposed to me on the 22nd at 12:15am. I was caught completely off-guard (which is hard to do to me). I'm so blessed to have such a wonderful fiancee!!!! He's the best! I love him ever so muchly!!!
I finally found out that I do not have Lupus (yet). That's right, yet. It's an Undifferentiated Connective Tissue Disease. My rheumy is so nice!! My pain management doctor is a jackass at times though. He ended up putting me on morphine sulfate, and the dosage he prescribed was actually enough to land me in the ER for an overdose. Yup, had to miss Sonny and my Harley riding & camping weekend to stay home sick. But, we figured out what dose I can safely take and not end up sick or o/d again.
Oh, and that weekend I stayed home sick and went to the ER??!! Well, that's the weekend I spent babying our 16yr old cat after the $400 vet visit from her episode of constipation.
Then the nightmare of all nightmares - cleaning Clay's disaster area that is actually his bedroom. Man, this was seriously the worst project to undertake while I'm going through so much physically and emotionally. But, we're making head-way and we actually found the floor in his room last evening!! How pathetic is that??!!
Tonight we get Clay back. I'm so excited to see him!!

Like I said, it's been a busy and crazy summer.

Thursday, June 2, 2011

Vanity or Sanity

Ahhh, the little things that make us feel a little more human. You know what I'm talking about... The manicure you get at the salon because you can no longer do your own fingernails, or putting on make-up on the first day you've felt half-way decent in weeks. That cute shirt you bought on impulse at the clearance rack, but you know that it will cheer you up and make you feel special (and pretty) every time you wear it.

I truly have always treasured the little things in life, but I appreciate them so much more now than I ever did before. The love I see in Sonny's eyes when he looks at me....ahhhhhhh, it melts me and makes my heart skip a beat. And, I try my best to remember that beauty is in the eye of the beholder. The scars on the outside, those are just inconvenient at best. Remembering to love myself with my illness and flaws is a daily struggle. Would I rather be healthy and pretty? Sure, who wouldn't want to be both of those! But, being the most amazing ME is way better.

I'm sitting here typing, deleting, re-typing and deleting more and more... I can't believe that my brain fog has gotten so much worse that I find myself unable to complete thoughts without difficulty. I struggle to make the words come together and make sense, but they're often jumbled or stuck on the tip of my tongue. I had an amazing rant going on for this piece on Vanity v Sanity; and now none of it is readily available.

Well, maybe I'll be able to post more later if the fog is lifted a little (or hopefully a lot).

*hugs and spoons to you all*

Sunday, May 29, 2011

Prednisone sucks

Ok, so I started my 10mg morning Prednisone regimen on Tuesday. It's not keeping me awake or alert, and is just barely keeping my joints comfortable. My muscles are so tight and achy that it's near impossible to manage at this point. I keep (foolishly) pushing myself to do more and more; and I suffer the consequences horribly.
But, there have also been a few nights that my Lunesta hasn't worked to put me asleep, and I toss and turn for 4-6 hours...only to give up and watch Netflix. I'm just getting so tired of everything. I'm losing the little bit of patience that I had held onto thus far.
My insurance company has denied 4 out of the 6 prescriptions that my doctors have written for me. I just can't believe that the stuff that's going to make me feel better is apparently forbidden. So, how in the world am I to get any relief at all??? This is just getting out of control. I just want to feel better.

Tuesday on the boat was the first day in 8 months that I was not nauseous at all. Go figure!! That is just so inanely jacked up! I can't even wrap my head around that one.

Well, my hands are cramping up pretty bad, so once again I must cut my blog short. I'll try to post an update later on with more details on how things have been going.

Love and spoons to all!!!

Friday, May 20, 2011

Stupid New Medications

New medications and feeling better are not synonymous unfortunately.

So, I started Cymbalta for its analgesic properties, and to hopefully alleviate some symptoms of my depression. I also started Savella for the Fibromyalgia. I'm on the loading dosages right now, and it's just not making me feel any better. My muscle relaxant needs approval, so I'm screwed there. And, my Lunesta prescription is not covered without my doctor trying other meds first. I did acquire a 'tens' machine though, and am finding it harder to use unless Sonny is here to hook me up to it.

So, the dry heaving is worse than ever, and I'm not getting any better with sleeping regularly. My pain has not let up, and has somehow gotten worse with the fierce rainy weather we've had lately. Plus, the two trips to the ER I had last week were just way too much for my poor body to handle. All that chest pain was just really scary. Worst thing is, they aren't sure what's causing it. My heart and lungs are fine thank God.

But, I'm seeing Sonny less and less these days since he's busier and busier. He has a life outside of this house, and I just wish I did as well. I'd love to go see my friends and visit with them...or to go out with the girls for a night of fun and chatter. I just feel like I'm slipping further into the shadows with each passing day. I'm not me anymore, and I can't figure out what I can do to hold onto any aspect of who I used to be. It's so hard to describe and explain to my friends that aren't Spoonies like me. I don't think they'd ever understand.

Wednesday, May 4, 2011

My life is falling apart more and more

So, next Monday is my court date for the bank. I owe them loads of money since they repossessed my truck and the auction didn't cover the full amount of the loan. And, I'm between a rock and a hard place. I mean, had they just sent me the disability paperwork I requested numerous times before things got bad last summer, I wouldn't be in this mess. Then, their attorney is denying my defense because I didn't fill out the appropriate paperwork for it. Well, I haven't exactly got the energy or motivation for paperwork. MD Legal Aid won't help me without information for income on all people living in this house. Sonny's family lets me stay here bc I have no where else to go. So, why is their generosity a negative for this? It's stupid. I have zero income from work, because I can't physically work. I have faulty mental capabilities, and major memory problems. I'm just stunned at how much this illness keeps taking away from me. At this point, I'm ready to just NOT go to the court date. So what if they say they'll take my possessions? I do not own a vehicle, house, bank account, etc... So, they are more than welcome to take those things. I'm just frustrated beyond belief at how bad things have gotten. How can being sick be anything but stressing, depressing, and frustrating?

Oh well. I've got a man who loves me the way that I love him - which is beyond words. He's the only thing that gets me through each and every aggravating day.

Monday, April 25, 2011

Silly Mondays

Well, I spent Friday through Sunday sick out of my mind. The ER was a huge consideration, but I didn't want to put Sonny through that again. The vomiting and griping pain in my lower abdomen has subsided slightly. I'd love to say it is gone, but it will never be gone. I'm just so tired of being ill.
And I've all but given up on make up. Nothing covers the scars on my face very well any way, and I can't see the use in wasting any more money on foundations that won't work. I may still occasionally wear eye make up, but it doesn't seem to be worth the effort any at all lately. Especially since I don't leave the house much any more. I'm sleeping a lot more, which is good and bad. I'm not eating very much, nor well.
We have lunch reservations with friends today down at the Inner Harbor at a Brazilian restaurant, and I'm kinda looking forward to it. I love spending time with our friends; it cheers me up and takes my mind off all the pain for a short while. I just wish I felt up to par for it. I'm sitting here dreading getting my bath and getting dolled up.
I never thought I'd see the day where I don't want to do fun things. My life used to be all fun and laughter. It isn't much of either here lately. Don't get me wrong, Sonny and I have plenty of laughs and such while hanging out here at home...but it's not the same as getting out all the time and having those huge belly laughs that force you to shoot soda from your nose, etc...
Well, I need to quit doddling and get on with getting ready. I'm wishing you all buckets of spoons and a cheery week!!
Love to all!

Friday, April 15, 2011

My new dr thinks I'm crazy

My doctor appointment was on Wednesday...and my new doctor must think i'm a hypochondriac. Well, I can't blame him really. He doesn't know me, or the struggles I've been through in the last year and a half. He said he can't start me on the anti-depressants, etc bc he's not a therapist. He can't send me to a rheumatologist bc he has no proof that I'm sick. He drew blood work and I see him again in a month. I really just want to yell and scream at him that waiting another month s not the answer, but he's the one with a medical degree.and he is very smart...he just needs a better bedside manner. He explained what he was doing and why he was doing it. He started me on Tramadol every 8 hours with two extra strength Tylenol to help with the chronic pain. It hasn't helped thus far, but I have to remain hopeful.

Tuesday, April 5, 2011

My new Pillow Top Mattress

Last week we ordered our new mattress. I was anxious and excited for a whole week waiting for it to arrive. We went and picked it up yesterday. A queen sized pillow top that is comparable to laying on clouds. Oh it felt so nice not having coils poking my hips and ribs last night. SOOOOO NICE!!!!
This is one of the small blessings that really do mean so much in my life.

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 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 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?

Wednesday, February 16, 2011

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.

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?

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 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.

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).

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, January 29, 2011


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! ;-)

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.

Wednesday, January 26, 2011

Another rough day

Well, the winters in Maryland are not nice. It's snowing and it's so painful to live through. The aches get worse, the fatigue is horrendous, and I just want to get better. A lot of people love the snow...I used to be one of them. It is very pretty, but the changes in temperature and air pressure are too much for my poor little body to deal with.
I don't have medical coverage, so I'm living with Lupus, Fibromyalgia and a handful of other problems because of my auto-immune problems. There are so many medications that I should be taking, but I can't afford them. I have been unemployed since June 8, 2010, and I am waiting on a determination for Disability. I started getting sick in December 2009 and it's been a downhill battle since then. Everything has gotten more painful, more tiring and easy tasks are frustratingly hard to do most days.
I have to use cups with lids because I never know if I'll be able to hold onto my cup. I spend my days cooped up in the house in my warm pajamas. On the days that I go out to see people, I'm miserable and try not to show it. I love getting out of the house, but I know that I will inevitably spend the next few days in bed because of it.
Thank God I have a loving, understanding and supportive boyfriend. The littlest things mean so much to me. I've learned to cherish simple things so much more since I've gotten sick. My boyfriend has shown me that there are caring people out there in this crazy "me driven" world.
It's 5:30 in the morning and I really should be sleeping. But, my sleep schedule isn't always a set one. There are times where I am up for three days, deliriously tired and cannot sleep. Other times I can sleep for two days straight and still be tired. Either way, I'm tired all the time and I don't think I'll ever get used to that.
Here's hoping that I can get some rest this week. I honestly thought I'd be able to sleep a lot more than I have since I used more than my alloted "spoons" on Monday to get a ton of errands done, and to go out for a friend's birthday celebration. Monday started at 8:00am for me and didn't end until 2:00am on Tuesday. It was a horribly excruciating day.
1:52pm addition
I slept almost all day yesterday, and thought I'd be in bed til tomorrow sometime, but here I am still awake and aching horribly with a pounding headache and major chest pains. I can't tell how much of this is/could be from the possible sinus cold I have right now. I just know that nothing is working, and that if I sneeze or cough one more time my chest and face will explode. Owwww.