Saturday night a dear friend of mine had a baby shower and I, as usually, couldn’t eat a thing served. Which was just fine by me, and I brought some of my coffee cake stashed in the freezer to … Continue reading
I have so much I want to write here, and so very little energy to do so.
Ignite Charlotte was, mostly, wonderful. Hopscotch was very cool. I want to tell you about them.
But right now, my focus remains on my health.
I am sitting here, shaking with frustration and rage.
Earlier, I was in tears, sobbing into Ben’s shoulder, wanting nothing more then to melt into a puddle that doesn’t have to deal with this fucking disaster that is my health. He couldn’t tell me it would be okay, or that we’d figure this out. Because, you know, maybe it won’t and maybe we can’t.
I feel so many emotions: anger, frustration, despair, hope, gratitude, love, faith, terror… and those are the ones I can name.
Howdy friends, I know it’s been quiet here.
What have I been up to? Going to doctors, getting a zillion tests, racking up more medical debt then bankruptcy court is gonna believe, and taking pills that have damn near tried to kill me. It’s been fun times.
Other then that?
I’ve been getting out as much as possible. Thankfully Charlotte lacks not at all in free, awesome things to do. We went to Shakespeare on The Green with Sarah Shumway and her lovely fellow. We’ve been off to the White Water Center, and are heading back tonight with friends. I have learned how to manage in the heat, in spite of my health.
I’ve spent time with my friends as much as possible, but everyone’s schedule are super busy. Ben took me with him to Durham for a week, so I got to get out of town and go to a game, a show and hang out with some awesome folks up there.
I taught a workshop at Be Yoga on Yoga & Meditation for Chronic Pain. I’m officially writing my book. Progress is being made.
I filed for Foodstamps, Medicaid and am working on my SSDI (disability) application. I have preciously $3.96 to my name, and I plan to spend it on one Lyrica pill. My life looks fucking miserable on paper. So I try really hard not to look at it there, doing say would depress me beyond measure.
My doctors have basically called “Uncle” on my body and we’re doing one last round of tests with the Neurologist. Details on that particular joyride are here.
I submitted a talk to this fall’s Ignite Talks, so hopefully, you’ll see me there.
It’s been a rough few months.
I remain beyond broke.
I am, yes, finally, forcing myself to go visit social services next week. My Fibromyalgia specialist says it’s extremely uncommon for patients with only this diagnosis to get disability. I continue to hope, and have found an organization that may be able to help me. We’ll see.
(meanwhile, should you wish to help, the donation box on the sidebar still works. I need meds and my phone bill is due. I would be deeply grateful. /begging)
I’ve changed medicines a lot, and currently am adjusting to a new one. It helps me sleep, but the pain the previous med was helping with has returned, and I am in a lot of pain – not intense pain, but constant low-grade pain. I find it to be primarily annoying. Also, the new med has been providing me with deeply strange dreams, and I am hoping those fade with time.
For more updates on my health situation and my work on my book, I recommend you check out painydays.com and take a peek at things there.
I have actively started on the book. I have a solid outline, a couple pages of intro written and a lot of research to do. I am going to, hopefully, get my surveys up this week, so people can start filling them out.
I have four workshops coming up. Three at Levine’s Children Hospital at CMC for staff about how to use massage, yoga & meditation to help support families. The fourth will be open to the public at Be Yoga about Mediation & Yoga for Chronic Pain & Illness. That will be on June, 18, 2011 and I’ll post more about that as it gets finalized and I have exact time & cost.
I am seeking, less desperately then before, for a new meaning and purpose. I need to do something with my days, and it is often difficult to do so. However, I know that I do not have to produce to be a valuable person. I can, you know, be of value just in and of myself.
I remind myself of this daily. It is hard though.
I hope that this book offers me the meaning I need. I have found a wonderful group of fellow Spoonie on twitter, and I am happy to be supported and supportive there. I am excited about the chance I have of connecting with others, and finding ways to improve not only my life, but those of others, even if it is no longer in a hands on way.
Anyway, that’s what’s going on here. I hope you are well, happy, and blessed.
I didn’t know how to write this post. I’m not sure I even know where to start.
You haven’t heard much from me these last few months for one main reason: my health, or lack of it, has been slowly stealing my life away.
It’s not just my Fibromyalgia, though that’s part of it. I’ve also had some intense gastrointestinal issues, which were causing a scary bit of weight loss there for a while.
At first, I was flaring, then I had stomach pain, and then I went to doctors and specialists, and then I had a few outpatient procedures. Then they found ulcers. So we treated those, and pain persists, in fact, it worsened. So they repeated the scopes and this time everything came back “normal.”
How I hate that phone call, “This is the doctor’s office. We’re calling with your results from (name the procedure or test). Everything came back normal. If you’re still having pain, he wants you to come back in.”
So back I go.
everybody is laughing out loud / to hide all this fear, all we feel / everybody has made up their minds / on what to believe is real
I want to tell you I’m optimistic. Most of the time I am.
I am also absolutely terrified.
I keep getting worse. It’s the pain. It’s the neurological issues: the nerve pain, the dropping things, the mental lapses that are sometimes a mile wide. It’s waking up feeling like I’m 80, creaking in every joint.
What I am fighting now? More then Fibromyalgia. More then GI distress. More then my mixed-connective tissue disease acting up. But what more?
We, simply put, do not know.
you say your heart is unchangeable / but your words mean nothing to me / can you show yourself in this life / can you show yourself in this life
Not that we’re not trying. My primary care physician, two specialists, two physician’s assistant’s and a nurse practitioner are trying everything they know.
Meanwhile, I’m taking expensive medications, rapidly lost my ability to work, and while I am working to file paperwork for financial help for medications, test and doctors, there is a time gap where I am am coming up financially short.
I make daily decisions between food and medication. This is what my life has come to: I have $5, do I buy a day’s worth of pain pills or food?
Meanwhile, I desperately cling to optimism & hope.
everybody wants to dream about dreams / but dreams take a lot to hold / everybody bets on a sure thing / but it takes guts not to fold
I have $0.40 in my bank account. I am past the point of pride on this, and it is an awful feeling. I have asked too much already of those closest to me. I have accepted that my dream, my business will not survive in its current form. I am grieving for the life I used to, and could, have.
My roommate, who awesomely charges me, basically, no rent, and my boyfriend, who supports me financially in many ways, already carry the brunt of my care & support, though I have a network of close & relied on friends who get me places and makes sure I have whatever I have the nerve to ask for.
I can not express fully my deep and abiding gratitude for them.
cause there is a person inside of a name / but that’s hard to face / oh you wanna pray for conversion / but you don’t know what for / so it’s a tug of war
But the burden has gotten too large. I can not, and do not, expect them to support me entirely. Many of my medical costs are covered by a charity through CMC.
Many are not.
I have a neurologist appointment on Thursday that I have to pay $220 when I arrive if I even want to see the doctor. Then the rest must be paid in full before any tests are scheduled. They do not accept my charity plan or Medicaid.
I have a rheumatologist appointment on March 11th, that is similar in it’s financial requirements. I am out of several medications come Thursday. The cost to refill them just to get through two weeks will be over $200. And that’s if the specialists don’t add or change medications.
and everybody wants to talk about love / it takes a lot to love
So I am asking, please, pretty please, help me.
I am begging of you, if you have anything to spare, anything you’d be willing to share, 62 spare cents sitting in your PayPal account, that you help me.
If each of my twitter followers donated a mere $1 I would have enough to pay for both doctors and some medicine: a dollar.
That’s what I’m asking you for a dollar or two. I do this humbly. I do it fearfully. It is hard. I am asking you, straight up, for money, knowing I will likely be unable to repay.
But I am more afraid of not seeing the doctors I need to see. I am more afraid of days without my pain meds, of the panic attacks that missing just 36 hours worth of meds caused me for nearly a week.
I am abashedly begging you for help. I have never needed it more.
If you donate, I ask one thing, include your name & address, so I can at least send you a thank you. However, if you wish to be anonymous, I will respect that.
Every penny will go to medical costs. Doctors, testing and medicines. You will be contributing directly to my health improving.
You can donate here or directly inside of PayPal using my email (firstname.lastname@example.org).
I will never be able to thank you enough.
UPDATE: I am blown away by everyone’s generosity. Thank you!!
* * * * *
The lyrics quoted are from Garrison Starr’s “Unchangeable”. That and “Sit With Me Tonight” are keeping me a float.
Note: Apparently the link isn’t working for everyone to PayPal. I couldn’t get the proper button to stay. WordPress kept eating the code. Any ideas are welcome, and I’ll fix it. UPDATE: Ben fixed it. Because he is awesome. ❤