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!!!

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.

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.

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!

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.

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.

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!