Getting better...

Rough morning waiting for it to get better. IT WILL! Just the waiting is quite the *pain*...hmmm...apparently brain fog has not affected my dismal punning abilities...

When I started this blog (again, lol) I wanted to chronicle my life, my life with my cocktail of chronic illnesses and the stresses, to keep a record. An honest one, not to honey coat or overly demonize it, just that there can and is a good life in between these layers of gunk. Sticky and spicy and sweet. A beautiful life.

I hate talking about pain, I hate talking about body functions I hate admitting I'm in pain. There is nothing anyone (including me) can do to change it, it is there and will be there for as long as it is and then it will be gone for as long as it will be. I don't like it, when I was growing up to admit pain was to be weak (still is). But I'm not weak. I know this. I would have taken a powder, stepped out, pulled the plug, turned out the lights a long time ago if I was. I'm not weak. But I'm not a super-hero either. I didn't want this blog to be a constant whine of how shitty I feel or am doing, or both. I wanted it to be an honest look of how one person copes with a myriad of illnesses disability and the ridiculously low pay that goes with it.

Hmmm...do you see the conundrum? I talk about my pain or nausea I feel like I'm whining. Can't help it. Refer to my statement about growing up and weakness. And weakness was nothing you wanted to show in my childhood home. Ah, and those of you who know me probably knew I didn't grow up with Ward & June Cleaver or Ozzie & Harriet. But what many of you didn't know is was how skewed it was. If anything it was something akin to Christopher Titus and his fractured family. The stuff they don't show on TV, even HBOhhhh...

According to the new (idiot) doc I should be happy the metformin kicks itself through my intestinal tract like an epileptic on poprocks & crack, it keeps the weight I *should* be gaining from the glipizide off. The diabetes meds are keeping my blood sugars "on target" never mind the pummeling my kidneys are taking and the violence to my back, stomach, intestinal tract and colon...speaking of...oh my...BRB.

Never mind being unable to walk from the back pain and spasm equals "crippling". Whadaya mean your back muscles are so exhausted you can't sit up? Whadaya mean crippling diarrhea? "There is NO SUCH THING. YOU READ TOO MUCH and believe too much of it, not everything you read on the internet is true." So, not only curt dismissal but added injury, insult and extra salt to pack the cuts with...

Listen, this is me, my body, I'm telling truth and my immediate family can vouch. Lots of pain and things that cause exhaustion. But oh the ignorance from supposed trained medical professionals. I would think if maybe they weren't "trained" in the area of chronic pain and autoimmune diseases they were at least trained to remedy their ignorance but oh how they cling to it! Ignorance! Fighting with that mindset is so exhausting!

Thinking on the matter more I guess I really should be happy about the glipizide placing me in holding pattern concerning the weight loss...because if it had kept going the way it was, at a low calculated average monthly rate, well, I'd be 20-30 lbs down (in less than six months) and actually 10-20 lbs under my "target" weight. It works almost like a tape worm anyway, I can eat whatever I want (whatever I can "stomach") and STILL lose weight. All you perpetual dieters out there, don't get envious though, remember HOW I drop this weight, perpetual crippling back spasm inducing violent projectile diarrhea is nothing I would wish on anyone. Not even my ex...well, maybe...er.. ok...moving on...

South Sound Family & Sports Medicine...BOO!!!

Just started here after the clinic in Elma closed. Reception staff is great, no problems there. Had two visits in two months, my diabetes prescriptions were screwed up from the get-go...and the guy had the bottles with the amounts/directions in front of him while writing the new prescriptions. Always writes EVERYTHING for no-refills (my diabetes medication is not going to change from month to month).  This means I have to call in to the pharmacy for refills at least 7 days before they are due because they have to send a request to the doctor's office to be refilled. This can take up to a week. I am diabetic and this is like playing Russian Roulette with my meds if there is any kind hold up on the refills. This isn't the only issue but it is a big one. General care is poor, medical professional (not a doctor) seems uninformed not only concerning my health history but about general health conditions that have bearing on possible treatments and solutions. I was told when I asked about possible alternatives to metformin as my digestive tract is hypersensitive to the metformin which results in severe stomach discomfort, bloating, pain and severe violent diarrhea (for which I have been hospitalized for in the past and which is in my records but the guy seems clueless). "Well...it's working on keeping your blood sugar down, so we don't want to change it, just eat more celery and carrots." Seriously. Looking for a new Doctor ASAP.

Forever and a day huh?

Seems like it's been that long since I've posted here anyway, lol. Been busy, wish I could tell you I've been busy making tons of Art (with a capital "A" mind you) and making tons O'Cash. Nope.

But I wish I could, lol.

I've been pretty sick, the weather has FINALLY started to change for the better and since that affects me severely anymore, that has been a big factor in me doing ANYTHING.

So, the weather has gotten a little better and so have I. Then I feel pretty good on the nice days and do crazy stuff like I'm my old self. Crazy stuff: take the girls out in the boat and row around the lake and the island. Two hours later: OUCH my lower back had a fit and spazzed all the way out. Then I threw up from the nausea from the pain. Then I passed out from exhaustion---not from going out in the boat mind you but from the back spasms that came afterwards.

Some days are diamonds, yes, and some days are just shit.

The diamond days are few but they make up for the poo days but it takes a lot of work to stay upbeat. Some days I don't make it either but frankly, everyday I don't give up is a positive day. And when I say "give up" I don't mean acknowledge that I am unable to do what I wanted to do for the day and I must take to my bed to rest and take it easy. I mean give up and take to my bed from depression due to the fact that I can't do a damn thing due to pain and exhaustion from pain or whatever illness, nausea BS my body is going through at the given time. Giving up. Not wanting to go on with life. Conceding defeat and that this bullshit condition wins and is great than my will. NOT! I have this illness, it doesn't have me. As long as I can choose my attitude I choose to go on. And it's hard but the alternative wait...what alternative you ask? Well, *THAT* alternative that I refuse to discuss, because I don't have time for it. The leading cause of death of people with Fibromyalgia (FMS) is suicide. I would be lying if I said I had never ever thought about it. There have been some episodes in the past where I was so sick I thought I was dying and then got even sicker and was actually afraid I wasn't dying fast enough. Dark, dark days. I ended up in the hospital (more than once) due to the fact that I was actually so physically sick I was very close to dying. Uh duh, right? Not so, it's like having the worst flu EVER and being run over by a truck, you are pretty much out of it. Or want to be if you are coherent enough to think.

Fibromyalgia and/or CFS (I do have both) by themselves rarely fatal. In my case, I have Chronic Epstein Barre Virus (CEBVS) also known as Severe Chronic Active Epstein-Barr Virus (SCAEBV)  in addition to having FMS, CFS, Diabetes and a super long list of problems/conditions that (now I know) were mostly stress induced, which helps me by me minding my stress level now but the major damage is done.

CEBVS makes everything else more serious if I go out of "remission" for lack of a better word, so in my case, FMS can become fatal if paired with a CEBVS episode if I'm not very careful. CEBVS is basically like a severe case of Mononucleosis (EBV is commonly known as mono or the kissing disease) but the difference with CEBVS is that you've got "Mono for LIFE" . Oh Mono, lots of people think, the kissing disease...not serious...

But...in SCAEBV which is a rare Epstein-Barr virus associated disorder (which of course, my luck you know, rare=weird with doctors in general, lol) this disorder can cause chronic tiredness and fevers and sometimes be complicated by life threatening problems such as multi-organ failure, chronic (ongoing) pneumonia, and lymphoproliferative diseases (diseases involving the lymph nodes which could eventually show up as leukemia or a tumor). The reasons for the body's inability to control the EBV infection are still unknown and no effective treatment is currently available.

So...at the first signs of a possible CEBVS episode, I clear my calendar and concentrate on doing everything within my power to avert it. I also always keep in mind not to over-do, not to skimp sleep, eat regularly, take it easy and plan relaxing and self care measures and follow through.

That said, I really went off here, I see that now, lol, but it's rest time again and for now, I'm outta here...just another "day in the life"...Hope y'all have a great one! :)