Monday, August 10, 2009
An accurate account
He says:
The Social Security Administration (SSA) has a pretty wicked sense of humor it seems, but we’ll get back to that, it’s story time.
My mother (whose own blog can be found at http://fmslife.blogspot.com/ ) is a sufferer of many painful conditions; fibromyalgia, scoliosis, and spondylolisthesis up until she had her lumbar spine fused because of it; and is what people (read: doctors) call a “chronic pain sufferer”. It’s been 6 months since she’s been able to work and life is rather hard on both of us, I stay at home and take care of her, and she does all she can to get the help she so desperately needs while keeping us afloat on a myriad of government checks being thrown our way.
Her being jobless means a lack of health benefits for her, which in turn means that the medication she needs just to function is now rather expensive, costing roughly 2 cows, a chicken, and the rights to my own first born child… err, more like $80-120 per monthly prescription (note: it's actually $80 to $120 per prescription/per month - about $300 to $400 a month total), and seeing as we don’t have much of an income, that’s alot. So her recent endeavor has been to find some sort of government program to help her get her medication and easy inexpensive access to her primary care physician. Much to our delight, she was recently approved for medicaid.. for the month, until she goes on Social Security Income (SSI) next month. Medicaid meant that she would be able to get her quickly diminishing medicine supply replenished for nothing out of her pockets, or so we thought.
Upon being approved, she called around incessantly in order to get the information she needed; primarily her medicaid number; in a much quicker fashion than is usually expected, with only a month of medicaid available to us, we had little time to waste. With only a couple of hours spent on the phone, numerous transfered calls, and quite a bit of frustration on her part, we finally got a straight answer out of them: Head to the local Department of Health and Human Services (DHHS) office and your medicaid letter will be available to pick up. So I go up there myself to pick up the letter, only to be told that no, my mother does not have medicaid. Startled and a little angry having stood in line for an hour and a half for this bullshit, I call my mother and explain to her what the woman at the counter said. I go home, and my mother procedes to spend the next 2 hours on the phone calling around and looking for more supposed “straight answers” about as to where the fuck her medicaid was, because she has a prescription that is in dire need of filling, and we lack the funds to do so.
Again, an answer was received: head to the local SSA office and get an emergency medicaid certification. We went, reluctantly, and was greeted to a much faster reception, but yet again a depressing answer. They told us “Your medicaid was canceled because you’re going on SSI next month.” to which we replied “Well what the fuck about this month?” and it went on and on, until they realized the folly of their ways. Their sick twisted sense of humor comes into play when they told us “Well, it takes about 30-60 days for your medicaid information to be mailed to you.” Hold the fucking phone, what the shit did he just say?
Let’s recap:
1) We were approved for Medicaid for this month and ONLY this month, the month of August, in the year two-thousand and fucking nine.
2) We have to wait 30-60 days for our information to come in, so we can use the medicaid
Still not following?
We would have to wait until, at the latest and god forbid, the month of Oc-fucking-tober in order to get the information we need for her medicaid in order to be able to pay for the medication she needs now, in August. Perfectly logical? Fuck no. Does it not dawn on a person when we explain that we “were only approved for this month” that waiting 30-60 days for the information needed to come to us is un-fucking-acceptable?
After receiving a mental ass-kicking, the teller and his co-workers who were standing over the shoulder, dumbfounded and too stupid to realize the problem my mother and I faced, we finally got them to agree to set in motion the actions that would get us the emergency medicaid certification on Monday.
Back to me:
It's now 2:00 Mountain Time on said Monday and nothing has been done. Again, I've spent too much time on the phone trying to get someone at SSA to give me information on whether or not the emergency certification process has been started. I've left messages for two agents, as well as two supervisors. So far, nothing. I've called Austin, nothing. I've called the local DHHS, nothing. Nothing, nothing, nothing. The process is: SSA faxes Austin an "ok for Medicaid- please rush" letter, then Austin faxes the local DHHS the emergency certification letter, then DHHS lets me know to pick it up, then I pick it up and all is well for the next 20 days. Austin offices close in an hour. If this isn't done today, I can't get my medication today. If not tomorrow, same thing. And it goes on and on and on and on...until the month is over.
Sunday, June 21, 2009
Dream interrupted
Tuesday, June 9, 2009
A Fantasy
Sunday, June 7, 2009
Savella
May 29: Started taking Savella this morning and was unusually tired all day. Not sure if there is a connection.
May 30: 2nd day on Savella. Can't stop crying for even 5 minutes. Had to stop other anti-depressant to take this, according to pharmacist.
Since the pain management “specialist” couldn’t be bothered to discuss the interactions between my then-current (oxymoron alert!) medication regiment and the addition of the Savella, and my PCP didn’t know enough about Savella, I asked the pharmacist at Walgreens. It’s a good idea to get your medications from the same pharmacy so they can look up exactly what you’re taking and talk to you about interactions. Anyway, she advised me not to take the anti-depressant I was on when I started Savella.
I normally talk to myself anyway, because I am alone most of the time. However, I would think something then start arguing aloud with what I just thought. I repeat – I was arguing and talking to my thoughts. This is not the normal, “Where are my keys?” type of conversations. It still happens. And to make myself perfectly clear, it’s like my thoughts and my voice are two totally different entities having a debate, conversation, or argument. I’m about to give my thoughts their own name so I can refer to them properly. This is nothing like I’ve experienced before. Very curious indeed.
May 31 (PM): Day 3 on Savella. No appetite; no change in pain or depression so far. Crying stopped for now. Head feels heavy.
I don’t even think “heavy” is the right word to describe how my head felt and feels. I try to describe the “buzzing” to my BFF, my son, and my momma – but it’s not really a buzzing. It’s like I can feel every neuron firing inside my brain. Sometimes I feel a “shift” but I can’t even describe what I mean by that or how it feels. My entire brain chemistry is changing and I think I can physically feel it.
In addition, I completely lost my appetite on day 3. It wasn’t that I couldn’t eat, I was (and am) just never hungry anymore. And, of course, if one is not hungry one does not eat. That is not good! By the end of the day I wonder why I feel weaker, worse, dizzy, actually leaning against the wall while walking (or gimping, in my case) to another area of the house. I then realize I hadn’t eaten all day. While I am constantly thirsty and keep myself hydrated, I just never think about food anymore because my brain is not telling me I need it.
June 1: Day 4 on Savella (AM). Still not doing well. Had to take other anti-depressant last night to stop crying uncontrollably. Dr appt today.
I was back in
June 1 (PM): Day 4 on Savella. Dr ok'd taking additional AD to control depression. No change in pain level.
So my doctor said it was ok if I took another anti-depressant while taking Savella, even though Savella is supposed to work like an anti-depressant. If anything, it was working like a depressant with me. Savella is also supposed to control chronic pain, but it wasn’t working for that either.
June 3: Day 6 on Savella. I'm never hungry anymore so I forget to eat. Noticing an increase in anxiety attacks.
I have had anxiety attacks since I was 8 years old. Some severe, some debilitating, and some that weren’t so bad. These anxiety attacks, for the most part, do not have a trigger. Before there was always a trigger. I can just be laying in bed reading, watching TV, playing solitaire on my DS, then all of a sudden I feel anxious, terrified, the crying starts again, I’m mumbling to myself about something, my thoughts are feeding my attack (I swear my thoughts are out to get me). When it’s over, I could not tell you what I was mumbling about or thinking. They are just untriggered episodes and I have little to no recollection of what I was thinking about during the attacks.
These actually started happening before my doctor appointment and I told him about them. My doctor if I wanted to go back into the hospital, but I think he had a different ward in mind. I talked him out of it stating, “I just want to be at home!!”
So now we are on June 7, day 10 on Savella. I am feeling a slight reduction in pain in my lower back. That could just be the new muscle relaxer, though. However, I can honestly tell you that I would rather be in constant pain than experience the psychotropic effects of this drug. At least with the pain I still had some clarity of thought. It wouldn’t take me several hours and several revisions to write a blog. I would be able to go back and read it and it would still make sense to me. With this drug, nothing makes sense.
The fact is, I have a bonafide reason for being in pain. I have had back problems since I was 23, had a double-level spinal fusion at L4-L5-S1 in 2003, and was rear-ended (HARD) while at a dead stop in April 2007. I now have scoliosis in my neck that effects my shoulders, arms, upper back, and neck (of course); and my previous lumbar spine condition was aggravated. Well, not just aggravated, it was downright pissed! These issues were never addressed at the pain clinic in Lubbock, which I had hoped they would be. I wanted someone to look past the FMS diagnosis I was handed and look at the underlying cause of my constant pain. But they didn't. They tortured me to the point of screaming in their examination and told me I had muscle pain. No shit! I also have a lot of nerve pain but nobody seemed to even mention THAT! Then they put me on this drug and it's changing my brain chemistry. It's obviously not working and I think I'm going to make an appointment with my doctor this week to get off it.
If you have FMS and are taking or will be taking this medication, remember that my experiences may not be the same as your experiences. It is important, however, to document all the side effects you experience to discuss with your doctor. If you don't experience any side effects and the drug works for you, I will be happy for you.
As for me, I don't know what my next step is in finding relief from this constant and debilitating pain. I'm going to be trying some water aerobics, some beginner's yoga, some sitting and stretching thingy I can't pronounce (I was given a DVD as a gift). I am trying to remind myself that I can't just lay down and wait to die in order for this pain to stop. I need to do something to take my life back and regain my senses.
Gentle hugs and keep on truckin'!
Jessica
Tuesday, June 2, 2009
Music therapy
My life as an onion
Wednesday, May 13, 2009
Sleepless
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