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And they go unanswered, for now…

And they go unanswered, for now…

I had a feeling that this would happen.  I’ve experienced it far too many times these past couple of years.  When a doc doesn’t know what to do, they throw in the towel.  My husband called the rheumy’s office for the blood test results and was told by the nurse that the lab missed running the sed rate but all the other numbers looked OK.  So my doc didn’t think it was autoimmune related.  That’s it. period.  I feel very abandoned, I don’t know where to turn now.  They didn’t even want to run the sed rate again, I felt very much like he thinks I’m being a whiner, or worse than that a malingerer.  I don’t know what’s happening to my body, and before getting sick I didn’t have any problems so of course I think it’s autoimmune related.  Suffice it to say, yesterday I had the blues big time.

I find out today the lab results from the neuro’s office.  sigh.  Maybe he can help me, I just don’t know.  I’m still waiting for the referral to go through for the punch biopsy he wanted to have done at the hospital up north…maybe my muscles are related to the small fiber neuropathy.

When I started this blog, I wanted it to be a forum for other people who were going though some of the same issues I am and to share some knowledge that I’ve acquired.  I need to focus on that for now, I certainly didn’t want this site to be a TOTAL whinefest from me, I’m just really scared right now.  I can’t control my muscles, and not only is it painful, it is very scary.

I need to start thinking positively and try and figure out my next step in this.  We learned very early on that we have to be our own champions, I need to figure out where to turn for help now.

If anyone has had any similar episodes with their muscles, I would love to hear from you!

Now, I am going to focus on flipping this back into the blog that I wanted it to be 🙂  I’d like to do a review on one site a week of the places that I’ve found to be very helpful, supportive, and informative.  So that’s my mission for today!!  Positivity and some research.

Until next time…

Flaring, Friendship, and Flatulence

Flaring, Friendship, and Flatulence

It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.

OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.

Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him

Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.

That’s our girl. Through all the pain, she made my day.

Pardon our dust

Pardon our dust

As you can tell, this site is under construction…. Today is the day that I finally go back to my rheumatologist and talk to him about the methotrexate. I can’t tell if it’s doing any good at all as the side effects seem to outweigh any potential benefits. It’s been almost 2 months now and I don’t see any difference in my ‘well being’. The metho actually hurts me and makes my bones feel like they are frozen. Let me know how it affects you. Has it helped you at all? How long did it take?

T minus 1 hour and 45 minutes until the pharmacy opens and I get my refill of pain meds and anti-malarials and cancer medicines. I find that so freakin alarming that my life revolves around pharmacy store hours, and yet, how do I survive without any of these medicines? You notice I say anti-malarials and cancer meds. I don’t have malaria or cancer. No one has found a cure, or even a medication that is specifically for autoimmunity. No new drug has even been on the market for 40 years, I don’t get it. If I decide not to take the meds, well then, my body just attacks the shit out of itself and eventually I die. But while I’m waiting it’s pain city as my cells attacks all of my good cells and it really, really hurts. OK, after the pharmacy opens my posts won’t be so darn melodramatic, lol.

If anyone is out there with some methotrexate experiences, drop me a comment. I’d love to hear about how it affects you.

the high cost of bullshit

the high cost of bullshit

I went to see my new doctor today and did as I was told by my rheumy to let her know about these new symptoms. She ignored them. She gave me a pap and pelvic, wrote me a referral for a mammogram and a referral to get an x-ray on my right leg because that’s the one that hurts the worst. I was worried about a blood clot, she is looking for an injury. How could I have injured it in bed? I’m practically bed-bound from all the pain lately. I then found out the radiology department is the one that sued me when I couldn’t pay my bill in full in their time frame and they locked down my checking account. I almost laughed, it just capped off a totally wasted trip of time and money. Going over to the window to pay the bill I see that it’s $200 and I questioned it. “oh” she said “we gave you the discount it was 361.” WTF?

She told me she would not take on my chronic pain management or my depression and anxiety. Which these things all stem from my autoimmunity so what the hell is she good for? I guess just a pap where I could have gone to the county and paid a lot less. sigh.

So here I am at almost 3 in the morning whining about my day. I took my Ambien at midnight, but it hasn’t worked these past three nights because of the intensity of the pain. I give up.

Tomorrow will be a better day. Amen.

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