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!

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.

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!

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.

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...

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!

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).