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Way with words
Aug 31st
I’ve been struggling to find my words for the last few months. There’s so much to say and, to be honest, I’ve had so little energy. I’m not sure that this year has been any rougher than any of the last 5, but lately it seems that way. Probably because we finally did find a combination of things that work so well for me, then I lost my health insurance. I now have new health insurance, but they won’t pay for all my meds. To be fair, this year has had it’s great points too.
Anyway, we’ll cover all that another time. Today, an excerpt from my grandmother’s diary. My hero and inspiration.
11/7/89 This morning during my time after breakfast with tea and “devotions” (Yearbook of Prayer and “These Days” booklet) the Nov. 7 comments in the latter are just what I needed. It speaks of ” the simpering self-depreciation that tries to pass as humility in the attempt to “puff up” by exaggerated deflation, to be famous for one’s worthlessness.”
“What have you that you did not receive?” I Cor 4:6-7
“Neither boasting nor backing away, may we use our gifts in your service, Lord Jesus, knowing that each one is cherished. Amen”
I know I’ve heard “As you receive freely give” – I know have I heard that in my 64 years – yet I never really heard it until today.
This really spoke to me, as many of her entries do. I can tell you, I never would have made it this far without her.
I nutoo, Grandma.
Help Wanted
Mar 30th
I’m desperately trying to figure out how I’m going to make it to the end of the month. It’s the first time I’ve had to pay for Nuvigil (my first month was free), Zomig (and am already running low) and Lunesta all in the same month. And not just that but instead of taking a med that’s a few dollars to try to sleep now I’m taking meds that are over $80 to stay asleep, and then another $80 to stay awake. Well, now I’ll be taking more Nuvigil, so that will be over $100. Which is money I don’t have. But I really need to be able to stay awake during the day. And I’m taking Fiorinal again, Dr. Wilkin hopes that will help with the daily migraines I’ve been having, most of which are triggered by my shoulder. Plus I have to pay the $60 left on my COBRA for this month. Nevermind that the changes in meds are because I went to see the doctor yesterday which was another $50. I don’t have that money either. Oh yeah, and I still need to pay my rent.
We’re again coming to the point where we’re grasping at straws. Trying to fix at least part of something because, to (poorly) paraphrase what my doctor said yesterday, “There isn’t anything I can tell you to do to help you that you’re not already doing.” Not that I could afford anything else anyway.
To put it mildly, I’m freaking out. My family can’t afford to help me any more than they already have this month. I’m desperately trying to get my nerve block next week, but was told they may not be able to give me a time. All patients are being moved back to Oak Park because the cryoprobe in Chicago is broken. My lung pain is back to the point where it gets so intense that it makes me cry.
After seeing how much pain I’m in my mom told me to try and get in. But it’s like $1000 just for MY part. I don’t know how we’re going to pay for it. And I don’t know how I’m going to get there. I really don’t know what I’m going to do.
Oh yeah, and my insurance runs out on the 10th, so my doctor wanted to schedule me for the 9th to see if the medications changes work. That’s another $50. And I have to try and get as many prescriptions filled before then.
I hate being stuck in this position. If there is any way you can help, please, please do. And if you can’t donate, please pass on the word. I appreciate anything you can do.
I can’t begin to tell you what a blow it is to hear that things may not get any better when I’m barely holding on.
Bad Luck O’ the non-Irish
Mar 18th
In case you forgot about my epically bad luck today I
- found out my “savings” account was overdrawn by a sizable amount as a result of an auto withdrawl (by my bank, which means there is nothing I can do about it)
- had a pen leak on my quilt
- managed to stab myself in the thumb with the serrated blade of a tape gun
- bled all over my work
- missed DLD ticket sales
- got my shoulders worked on only to have my migraine come back worse
- speaking of that, still dealing with weird/wrong tastes in my mouth… not sure if that’s a migraine thing or new med thing
- got pulled over driving home because I had forgotten about my (lost and thus not updated) car registration
- Oh, and why am not sleeping? Hiccups. THEY. WILL. NOT. END.
Though to be fair the guy was really nice and suggested that I go to the secretary of state and they could take care of it without needing my lost paperwork. Then I should take that to court and he said judges are usually pretty nice about it. Here’s hoping. I have to look up where an office is tomorrow. Thankfully I had my right insurance card. And on a funny note I did realize that the police were out because it’s St. Patrick’s Day. If they quotas the guy was probably grateful to deal the a pleasant girl who wasn’t drunk. He was like “I’m sure you’re going to take care of this so I won’t hold your license as bond.” But oh man, registration is like $99, right? Is there a late fee on that? Oh, $8/month. :/ Not so bad. I wish I would have just realized that it was the same as the drivers license place! I would have gotten it done when I first realized I lost it. People, do not let me forget this!
At least I didn’t lose my Lunesta, I may need to switch pill cases again. I love this one but it doesn’t latch closed so things on the end that open first have way of coming out. I ended up finding it in the pocket of my purse. They’re a few dollars each.
Ooh. I’ve gone on long enough the hiccups have FINALLY gone away, and the migraine is easing up a little. A little more and I might be able to finally sleep. At least I’m not like a lot of poor schumcks spending the night in the drunk tank! I’ve got my kitty and heating pad (which may have to be repaired with duct tape for now) and my nice soft bed. Hopefully I’ll actually be able to sleep now. (Forgive any spelling/grammar, etc. errors – exhausted + sleep meds + not wearing glasses + migraine = well, a deck stacked against me in terms of writing!)
Much love to:
- Eilene
- Tim
- Rob
- Patty
- Dawn
- Missa
The Cost of Normalcy pt.1
Mar 10th
The cost of my medications is high, despite the fact I have insurance. I’ll total it up for you later, but it’s a couple hundred dollars a month for the “essentials”. Occasionally a drug company will see me post something about the cost of a medication and will tell me to contact them for help. Then I’m told that because I currently have insurance there isn’t anything they can do. I’m starting to wonder if it would be better for me to NOT have insurance and sign up for assistance programs. (Unfortunately) It seems I’ll be finding out sooner, rather than later. My COBRA is about to run out.
If I cannot afford my medications I will be unable to work. No work means no money. No money means no medications and… well we’re back to the beginning of what becomes a vicious cycle.
And, as it turns out, I make too much money to receive food stamps in Illinois. They count only my car payment, rent and utilities as my necessary expenses. Great. Except it is necessary for me to have my medications. What am I supposed to do now? I did the math before, about how much of my income every year is considered …gone, for lack of a better word, by the government. It was over $5000. I even tried itemizing my taxes, but despite being more than the percentage needed to claim medical expenses it wasn’t more than the standard. It adds up to tens of thousands of dollars lost to medical expenses over the years and there’s nothing I can do about it. That’s money I would have if I were a “healthy” (again, for lack of a better word) person. Them’s the brakes, apparently. And I’m still in constant pain from my lung. I need a $10,000 procedure, and that only lasts 6 months. Even with insurance it would cost me over $1000, which I don’t have.
It’s just the cost of normalcy in my world.
Where is G.I. Joe when I need them?
Jan 30th
I know that G.I. Joe is a group but it seems like I should discuss it as a singular dude…. Anyway!
Not surprisingly I have been in a crazy amount of pain over the last week. My lung is killing me and there’s no end in sight, since I don’t know when I’m ever going to be able to get a nerve block again. At the suggestion of friend I’m going to try to find out if they perform the cryogenic nerve block at Mercy Medical Center in Cedar Rapids, IA. Though I would have to take more time to do it, I wouldn’t ever have to worry about a ride and they’d be okay with setting up a payment plan. Rush seems to think that (quality of) life is less important than cash. While I really like Dr. Amin if the hospital isn’t going to be okay with something less than $25/month (especially when I receive multiple bills for a visit) then I literally cannot afford to go there.
I had a dream the other night where I’d been in some sort of accident and was in an aftercare facility. I was sitting in a wheelchair with my right leg elevated and in a lot of pain. Of course, then I woke up and was in a ridiculous amount of pain. Like my lung it’s been horrible all week. Mostly my right side, the hip and my shoulder up through my neck. The right always is worse than the left, save for my lungs. I notice that when I have lung pain I often am not aware of the pain on that side unless it’s really bad. I probably should have asked Dr. Wilkin to write the Rx for extra for when the pain is worse. I didn’t expect that I’d still regularly be hitting 9 on the pain scale though. I’m guessing the times that I don’t think to take a pill when I wake in the middle of the night will make up for it eventually. I wish I’d remembered to pick it up on the 10th! Then I’d have extra.
Of course all this pain means that my sleep has been terrible. I’m getting an hour to an hour and a half at best in any given stretch. When it gets to be 15-30 minutes I tend to just get up, even if end up going back to sleep 10 minutes later. It somehow seems less frustrating then. Normally I don’t look at the clock when I get up, but since the wake ups have been so frequent I wanted to see. And it’s not like knowing the time has ever made it more difficult for me to go back to sleep anyway. As usual I’m asleep within a couple minutes… only to wake up a few minutes after that!
So the G.I. Joe comment was based on what my friend Ed said the other day. I had mentioned that my COBRA administrator sent me a note asking for this month’s payment. However, I am receiving the COBRA subsidy and because I paid in full for December they technically owe me money, which in the past was just rolled over for future payments. Though that was a different administrator. Anyway, so I had said something about it and Ed’s response was, “Call in G.I. Joe… they hate COBRA administrators and use heavy explosives.” If only it were that easy! Obviously I don’t have an extra $200 to plunk down until they figure out what’s going on with the money, plus I’m just going to send it right back to them anyway. Thankfully, my friends have again proved that they are the most awesome, loving, caring people in the world.
Finally got my appointment rescheduled with DHS. Totally confused about it though. It doesn’t say anything about an appeal. I think maybe they realized the mistake. I’ll be counting down the days! I did finally do some grocery shopping, since we stopped being fed at work every day. But it wasn’t a huge budget drain because I’ve been asked to work extra quite a bit recently. Of course working means I can’t cook, so it’s both a pro and a con. I got a magical Starbucks card in the mail the other day, so I’d been eating there and working my way through the easy fix things in the house (oatmeal, pasta, popcorn). Anyway the point is… regular grocery shopping, here I come! (hopefully)
I want to thank a few people for all the help and support they’ve given me recently:
- Adam
- Blair
- Dan
- Eilene
- Eli & Rachael
- Lana
- Meg
- Rich
An Arm and a Leg
Jan 22nd
I wonder how much an arm and a leg is really worth. I’m going to guess that since I’m not a pro-athlete or model that they’re not worth very much. I suppose I could sell a kidney or part of my liver.
I wasn’t able to get all the information together for DHS in time, so I spent hours (literally) calling the office. Sometimes it would just repeatedly ring, other times the system would pick up (I would have saved a lot of time if I’d known there was a system that was supposed to pick up) so I navigated to get to an operator… ring, ring, ring, etc. So then I had to go through all of the different choices in order to figure out where I was supposed to go to get someone to tell that I needed to reschedule. I FINALLY found it and was eventually able to leave a message requesting to reschedule. What happens? A few days later they send me an application! What?! Obviously I’d already filled one out, otherwise I wouldn’t have had an appointment. So I’m guessing they didn’t listen to what I asked for in my message. Then a couple days ago I get a letter that says my application is denied because of my failure to appear at my appointment. I called right away to file an appeal. I guess we’ll see if that actually worked. I noted the time and date that I called in, now I’m wishing I’d gotten the woman’s name. I seriously would like to be able to buy groceries. I haven’t gone grocery shopping since December 4th.
Then there’s the credit card/bills situation. I got a notice from a collection agency about a debt that was SUPPOSED to have been recalled by Rush SurgiCenter. So irritating. I did get a donation the other day, so I will be able to pay a couple things. Just the small ones. Thankfully my dentist is super understanding, it’s the rest of the bills that are really a pain. Bank of America apparently didn’t take notes on the situation and keep calling me, same with Target. I’d made a deal with Discover early in 2009, so that payment isn’t too bad. But there’s also Chase, Torrid and US Bank. I’d really like to be able to pay Chase and US Bank. I guess we’ll see how the money works out. What’s sad is I don’t even have enough money for bankruptcy (even though I’m desperately trying to avoid it). How depressing is that? I’m just trying to get the companies to work with me. It’s just so… embarrassing. Here I was just trying to stay afloat. But with all the medical bills? Paying for COBRA? Loosing my unemployment because I was “foolish” enough to take a part-time job? Ugh.
I’m going to try applying with Census. It pays pretty well. The “perfect” job offer I found the other day turns out to have been a scam. Seriously, if you are in the Chicago area and hiring, contact me! I have extensive experience in the administrative field, particularly related to office management. I’d really like to keep my arms and legs (and internal organs, though I’d be willing to trade the lungs not that anyone would want them).
Sleep Interrupted
Jan 18th
In good news, I’m dealing with significantly less pain than I was a couple weeks ago. In bad news, my sleep is just as bad as ever. Friday night I literally didn’t sleep at all. Typically I am wide awake sometime early morning, 3 am-5:30 am. I take a vicodin because I’m almost always hurting when I wake and my doctor thinks that even if I don’t realize I’m hurting my body is still feeling it (which is also what the doctors at Rush thought when I had my sleep study). Then I try to sleep or if the pain is too much do something until it kicks in and then try sleeping. My lung pain has seemed especially bad lately. Which might be part of why I’m waking up. I’m still dealing with payments from the LAST time, so I have no idea how I’m ever going to afford another nerve block. I also can’t imagine how tough life is going to be without it. Ugh.
I’m working on getting things settled with Bank of America. They want to see what my paycheck looks like once they start taking out federal taxes before we decide on repayment. I’ll probably lose the account, which is unfortunate, but better than bankruptcy.
So I got a collection letter today from Lake Forest Hospital, for a bill I’ve already paid. A check they’ve already cashed. So I’ll have to call tomorrow morning and tell them they need to call off the collection company.
Still owed:
- $99.00 – Illinois Secretary of State – Car registration
- $22.08 – Lake Forest Hospital – x-ray
- $10.66 – Lake Forest Hospital – labs
- $114.87 – Mercy Medical Center – ER visit – pneumonia and H1N1 (more bills from this are expected)
- $355.80 – Dr. Albers, DDS – repairs to old work, crown, etc. (a wonderful dentist!)
- $100.40 – Rush Surgicenter – my last nerve block
Of course that doesn’t even begin to deal with the issue of my credit cards. I’m STILL waiting on DHS. They were supposed to reschedule me and instead sent me an application, so that’s another call I have to make. And I also have to call All-State to schedule an estimate for the repair of my car from when that woman hit me in December.
Who knew that working part-time while “unemployed” was actually a BAD idea?
Doubling up
Jan 8th
So I had an appointment with Dr. Wilkin Wednesday. We’re going to try upping most of my medication. I’m also supposed to try to find a job with less repetitive action. His explanation makes sense, and it would be why my shoulder has been acting up for months. It’s sad to think about because although it can be tough, I do like my job. I really need health insurance though so the new job should be something mostly administrative but with the opportunity to move about.
So now my daily meds from him are:
- 300mg Lyrica – 2x/day
- 500-5mg Vicodin – 6x/day
- 150mg Doxepin – 1x/day
- 350mg Soma – 4x/day (this is the only one of the meds he prescribes that’s staying the same)
I haven’t had much in the way of side effects from this grouping of meds, so let’s hope it stays that way. I’m supposed to beware of feeling like I’m going stupid. That’s his biggest worry with this dosage of Lyrica. He believes that I’ve been in too much pain and that it’s probably effecting my sleep and thus adding to my pain… a vicious cycle.
I’m also trying to get my things together for my interview with the Illinois Department of Human Services on Monday. I was really starting to worry about it. Well, I’m still worried, but at least I know I have an interview.
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