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.

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.

• 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

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.

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

If you’ve ever wondered what those barium drinks are like… well they’re not so great.  My boyfriend at the time, Greg, was kind enough to take a sip to prove it wasn’t so bad.  The point was not well proved.  Honestly it wasn’t the taste, berry, that was bad so much as the texture.  My memory of it is that it’s like a yogurt smoothie in thickness but very slimy.  I managed to get it all down and headed off to High Tech Medical Imaging in Fox River Grove.  I checked in and was asked a few questions, “Are you allergic to shellfish?” To which I said no, and then waited to be seen.

I was taken into the CT room and given one last glass of barium to drink.  I’m pretty sure I took it like a shot to get it over with.  The tech put in an IV.  We did a CT with just the barium and then they injected Isovue into the IV so they could see my blood vessels on another CT.  I was told I might feel warm, may even feel like I wet myself, but that I would be fine.  The tech was right, that was exactly what it felt like.  I also felt itchy, especially on my face but was told not to move.  The tech came in and said the one thing you never want to hear a medical professional say, “OH MY GOD!”  Apparently I was covered in giant hives.  Turns out I’m allergic to contrast.  They gave me some Benedryl and wanted me to take in a certain amount of fluids to help flush the drug out of my system through IV.  The worst part?  They didn’t want me to drive home.

What was I going to do?  I thought I was going to be able to go to work, but now that I had to take the Benedryl, I knew there was no way.  I stepped on a bee when I was 19 and found out I was allergic.  The nurse gave me Benedryl and I was passed out for the rest of the day.  I didn’t want to call my boyfriend at work to drive out to come take me home, because then I would have to have him take me back out to get my car later.  I ended up calling my work to tell them about the situation and ask for help.  They called me a cab, which ended up never showing up.  Plus then I was going to have to call the cab company the next day to take me back to my car.  I ended up just driving myself home, I wasn’t  going to wait anymore anymore.  I passed out on the bed as soon as I got home and slept for hours.

I worked a late shifter shift, so by the time I woke up, I could still get a few hours in at work.  I headed out, and was working the reception desk when Dr. Segal, the head of Lake Zurich Family Practice, called me.  He didn’t say why, and I didn’t think to ask for some reason, but they wanted me to go back the next day for another CT.  I assumed there was something wrong, but was told I wouldn’t have to do barium again, thank goodness!  He had heard about my reaction to the IV contrast and called in a prescription for prednisone, which would help suppress the allergic reaction.  I had to take some that night to prepare and some the next day.

Little did I know what he had seen.

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).

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?

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.

I need to ask if they think this is because of the meds used in the last one.  I was in a study that used different meds to put me “out”.  I use the quotes since the block is intercostal (around my lungs) so I have to be awake, though I generally don’t remember much of it.   There is the possibility I am just better off getting it done at Rush in Oak Park, rather than Rush in Chicago as Oak Park supposedly has better equipment.   A year ago I had a block done in Chicago and that was fine, so who knows.

Most importantly I have to see if I can get Dr. Amin or a resident on the phone to discuss this.  At least it’s not necessary for me to go to the office before scheduling the block.  Specialist visits are costing me $50 each this year. Considering I almost ONLY see specialists that puts even more of a strain on my already strained pocketbook.

Then comes the trouble of finding someone to take me.  I still have to wait at least a month, so I guess we’ll see how this shapes up.