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Archive for October 2011

Final Day of the Auction

Today is the last day of the fundraiser auction.

There several amazing items still available for bid, and if you don’t want any of the items, you can donate directly instead.

There is something for everyone, from eye pillows to Mary Kay to web hosting and UX consulting, including a $50 Amazon Gift Certificate – for the person who truly has everything!

It was also be super awesome if you shared this on Twitter, Facebook, Google+, and any other way you share awesome things!

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Tomorrow’s Two Pain’s in a Podcast will be at 12 Pacific time/ 3 Eastern due to the fact that my plane is landing shortly after our normal starting time. I’ll be visiting Jules for two weeks, thanks to her, my brother & my friend’s buying me a plane ticket so I can escape the clutches of the doctors for a couple weeks before the serious stress of the holidays and another round of specialist appointments. (I have two scheduled within 24 hours of my return to Charlotte!)

How I Got Here

It’s not obvious to others how I ended up in this place where I’m not working, uninsured and asking for help. It’s easy to understand if you just see me now that you don’t know the whole story. Even if you met me last year, before this got really bad, you wouldn’t know. So, for the many of you who don’t know me, and just read my words, let me tell you how I ended up where I am now.

I’ve been chronically ill, in some way or another, my whole life. I had a crazy immune response to my MMR vaccine as a baby, and then chronic ear infections, UTI’s & asthma. I got crazy things on my feet, and had to worry about sugar levels. Around 7 or 8, I started getting intense inflammation. I then got ulcers from all the advil I took to control that.

I spent a whole lot of my childhood in doctors offices, either for me, my brother or my mother. My genetics? Not so awesome on the inside.

We didn’t test me for lupus as a kid, in the hopes I would be able to get health insurance as an adult. My mother, having SLE, knew a bit about how these things worked. The whole pre-existing condition clause has been a *long* running issue in my life.

In my teens I had additional complication due to puberty. Migraines, periods so bad I was in intense full body pain so bad it would make me vomit. My asthma changed some, and my allergies got worse. In fact, I was home schooled for over much of two years of middle school because I was allergic to the building.

In high school, I missed out on hikes, camping trips and marching band because of my health. In college, I had to take a medical leave. I tried to go back later, and had to leave again. Even massage school, which was much less time & energy intensive, I had to take a break from hand on work during and finished six months after everyone else.

I have had health insurance, but once I received those migraine, fibromyalgia, costocondritis, mixed-connective tissue disease diagnosis (to name the top ones) almost everything short of the common cold became unconverable when I lost insurance when my ex-husband lost his job and we had a 30+ day lapse in coverage because we couldn’t afford the COBRA. I’ve been without ever since.

I have left jobs on disability, and had to shut down my business earlier this year. Working for myself was a pretty ideal situation because I got to control my hours, limit the strain on my body and rest when I needed to.

This past year, however, my health started spiraling badly. Last summer I went through a lot of personal stress, plus I was taking my anti-inflammatories to keep my health in check. Then I developed ulcers and had to come off some of my meds. Which led to my other stuff flaring. What started as small stomach pains, ended up being a lot of my hands, exhaustion, fatigue, pain and a very real inability to take care of myself, let alone work.

Medicaid has turned me down, but I am appealing. I am consulting with Allsup about disability. I am pursuing all possible avenues of financial and medical assistance. But still, we don’t know what’s wrong or what’s really happening.

I’m currently doing an elimination diet, which does seem to be helping my energy levels and reducing my pain a little. We discovered I’m allergic to a bunch of stuff I was consuming and had no idea. We’re also testing on Monday to see if my asthma is still an issue, and then we’ll treat that as well if it is.

I have an appointment with a pediatric geneticist in March at Wake Forest, who will, hopefully, be able to make the determination of whether I have MSUD or not, a genetic condition effecting my ability to process proteins. I’m nervous about how far away it is, cause at that kind of distance from today, there’s room for things get worse. An idea I really don’t like.

I can’t go to Mayo because I can’t afford them. I can’t really afford my meds either, so I’ve been taking them & filling them on a cost/effectiveness/necessity basis – which my docs know and don’t like but there’s not much we can do about it.

So that’s where we’re at. I’m broke, I can’t work, and I need help to figure out what’s wrong so I can either file for disability or get Medicaid approval or go back to work one day.

It’s a pretty sucky place, and some of the stark realities of the situation are a bit more then I really want to put down in writing, but let’s just say, I’m not everyone’s sunshine these days, and I used to be. It’s hard to be though. I’m trying, with everything I have, but when your health comes down to the dollars and cents… it gets tricky.

I’ve been very lucky, with the support of friends and family, and have a roof over my head, an occasional pet sitting gig, and food to eat. Hopefully that’ll improve soon. The strange part is I need my health to get worse or my illness to go away to make that happen, or money to pay doctors to figure it out in the hopes that someone, somewhere will be able to help me more.

And that’s where I am. Waiting, hoping, and honestly, not sure what I’m hoping for. Anything that’ll make it better, frankly.

At The GI Again

In your head, that should be read to the tune of “On The Road Again” though, I really could wait to go to the GI again. Also, I’m feeling very parenthetical today. 

After a month of elimination diet, and a check in the allergist in the morning, there I was in the GI’s office again.

By the way, the sign that you’re at particular office too often? The check-in ladies recognize you, remember your insurance situation and only ask your last name and date of birth to double check they’re correct. They’re very nice ladies, but I think I see them more often then any of us would really like. I want to leave one day, like I did the oncologists office, and hear, “I hope we don’t see you again.” That will probably never happen. Anyway…

So, I was called back, and I weighed in around 130. (This distresses me slightly, as it means I’ve lost a few pounds while on the elimination diet. I was happy with my previous weight.) I met with the NP, and we talked about the fact my GI issue aren’t really changing despite the elimination diet, that I’ll try gluten free next month, and that I’m having nightmares about vomiting due to my reflux.

She says that my Prilosec isn’t working anymore, since even when I switched from 20mg at night and 20mg in the morning I was still having pain. I need to switch to a different med. Of course, this is when I mention that there’s sulfur something or other in the inactive ingredients on Prevacid. (I learned this while waiting on another prescription to be filled. I spend entirely too much time in the pharmacy at Target.) She suggest Zegrid, and if that doesn’t work… eventually, after some back and forth, she writes me a list of all of the current acid reducers. I was then sent to the pharmacy to figure out which drug I could take, and possibly afford, with the pharmacist.

(We also had a weird conversation about the number of people who express regular concern/curiosity about my bowels. Just imagine that, will you? I don’t think you really want details. But, we laughed. Because, really, poop is funny.)

Off to Target I went, and looked at Zegrid. Also allergic. So, I asked for a pharmacist, and she grabbed me the packaging for Protonix, and there’s nothing in there I should be allergic to. Unless you count “shelac glaze” – who knows what’s in that, it probably needs it’s own ingredient list. We’re going to presume that small amount of shelac isn’t going to kill me, so we’ll go with it. Bringing my new acid reducer price to $81 a month, because I needed to pay more for medications. </sarcasm> I’ll be using up the rest of my Prilosec first, and avoid anything acidic for a while.

I go back in 6 weeks. If there’s persistant issues, then it’s either an appointment with the doctor or another endoscopy, though she was insistent that it was clear in February, and it was. But I also had two active ulcers this time last year, so I’m not holding my breath either way.

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Like funny songs? Would you like funny songs about being sick? Yeah, you would. Check out Carla Ulbrich & her comical musical stylings below. And then you can go bid on a signed copy of her CD Sick Humor.

“That actually tests for caffeine.”

The auction to raise funds to help with medical costs is live. You should check it out.

This morning I awoke early and caught a bus, to check on the dogs I’m sitting for and grab the truck, and then head to the doctors. It was a seemingly simple exercise. Bus, transfer, let dogs out, get dogs in, drive truck to doctor’s office. However, there were a zillion little things that went sideways, and I made it to the doctor office five minutes after my appointment time, but I got to see what happens when a SUV “taps” a Mini Cooper. *ouch*

I made my way into the office, had a lovely chat with the nurse, and awaited the Allergist. We discussed how the last month has been going with the elimination diet, which, on the balance, has been good. My energy levels are up, my fatigue is down, my hand use is up, my swelling & inflammation are down. I am having some weird reaction to things and my belly is still angry, and I think I had an asthma attack last night.

So, we discuss options, consider what else to add in, take out, and she gives me a firm directive regarding making sure I have my Epipen handy when I start adding food back in. (I am excitedly looking forward to sushi next week when I add soy back in. I miss sushi, even if I will be without tuna or crab.) I tell her I’m wondering if the mouth sores are from a possible gluten sensitivity, that I am consuming gluten almost daily, but could work on cutting it in a couple weeks. Same deal with palm oil, since it’s so closely related to coconut, but I need to add soy back in first.

She agrees, and suggests I stay off gluten for a couple weeks, once I’ve started adding things back in, but to be careful because most gluten-free foods have potato flour. That I need to stay close to the elimination diet for two months to allow my body to fully heal. I can then know if the responses in my body, such as sores & GI issues, are allergen related or something else. Which will give me good info to have at hand when I see my other specialists in the coming months.

Then we talk about the reflux. For those of you not playing the extensive home game, listening to me whinge on twitter & Google+ or in person, I’ll fill you in on the reflux. I’m having nightmares where I am throwing up, and then awake to acidic burning reflux. Night mares about vomiting. This is what my life has come to… and a small cup of coffee causes pain like one should not be able to imagine. Then we enter into dialoge:

Doc: We tested you for coffee, right? And it came back sensitive?

Me: Yes, I’ve cut down to one or two cups a week.

Doc: Are you still drinking tea? Caffeinated tea?

Me: Yes, every day, it hurts less, but still hurts, but a cup or two…

Doc: The coffee test… That actually tests for caffeine. You’re probably sensitive to all caffeine.

I blended tea for a living. Tea is the awesomeness that made me a happy for years. And I am sensitive to caffeine. The doctor suggested I try decaf. I’m going to try to find a reason to keep on living. (Okay, that’s dramatic, but seriously? Caffeine. It was one thing to take my hands, but now my tea? I am going to need some time to come to terms with this. Decaf teas are out – the chemicals used are not safe for my bodyand, unlike coffee, there’s no water-decaf process that’s safe. I’ll simply have to experiment with teas and caffeine levels.)

Then, in a return to the days of old, she wrote me a script for Albuterol. I’ve had a couple mini-asthma attacks lately, and last night while on a walk with Ben, I thought, for the first time in at least 8 years, I could really use a rescue inhaler right about now, as I huffed and puffed along. It’s entirely possible that for some time now the chest tightness I have been passing off as costocondritis has been asthma attacks. So, I’m to use the inhaler, just in case, and if I use it frequently, we’ll add back in a daily asthma regimen. I go, just in case, for a pulmonary function test on Monday. My first in ten or so years.

I, of course, promptly went and got a half-caf latte with goat milk at Central Coffee because the appropriate response to being told not to drink something is to go have some. Hey, sometimes you need to give in to your childish impulses, just once, so you can move on after that. This was one of those times. And I’ll tell you what. It was tasty. Also, my body completely freaked out – I got all red and splotchy all through my limbs and chest, something I’d noticed but not been able to attirubte to a specific thing before. So coffee is seriously out. I’ll do a test run with tea tomorrow.

Then, after that, I went to the see the gastroenterologist. But that’s another blog post all together.

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Want something cool for breast cancer awareness? Check out these auction items: a gorgeous limited edition pink ecocuff from Green Market Girl & signed copies Tamela Rich’s soon-to-be-published book Live Full Throttle: Life Lessons From Friends Who Faced Cancer.

Medical Cost Fundraising

Hospital bill for spinal tap, which doesn't include labs.

Ah, medical bills: the bane of my existence.

My medical debt? Over $70,000. My monthly meds? Over $700 if I bought them all.

And always doctors appointments, costing anywhere from $60-$350. Plus labs, scans, etc.

It’s not surprising that over 60% of bankruptcy occurs because of medical debt.

Mayo Clinic is happy to see me, assuming I can pay upfront, since I don’t have a diagosis. Each doctor appointment? $689. Plus tests. I am estimating the minimum need for costs (just for Mayo, does not include travel or food): $10,000.

Wake Forest geneticist appointment is in March still, though my poor dermatologists office is probably getting sick of the sound of my voice. I’m calling them twice a week, Tuesdays and Thursday’s, in the hope they can move it up. No one knows how much his tests will cost. He’s my back up, in case I can’t get to Mayo sooner.

I don’t even want to really think about how much following my elimination diet costs me. My $198 of food assistance doesn’t really cover it. Let’s just say the world is a safer place because of Annie’s Chocolate Graham Bunnies.

To help me cover these continuing crazy costs, an online auction is happening today through the 31st of October. There’s an awesome collection of donations, with something for everyone. From web design & consulting services; to foods, fibers and jewelery; to yoga & energy therapy; there is something for a wide range of needs and price ranges.

You can help out by sharing, donating, bidding or passing along the info to anyone you think might be interested! My deep gratitude to everyone participating & helping out! <3

If we raise $10,000, I’m going to make that Mayo Clinic appointment in Jacksonville. All money will go to covering my medical costs, medications and doctors appointments.

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If you’d like to donate to the online auction, you can still do so. Just email me at summer@painydays.com and I’ll send you details.

Tuesday on Two Pains in a Podcast we’ll be discussing the upcoming holidays and the extra planning required for them if you are chronically awesome. Come join us at 1pm EST.

Disclaimer

I am a patient and a massage therapist. I am not a doctor. Even if I was, you'd be silly to change your wellness plan based solely on my blog.

This information is for information only, not diagnosis, treatment or assessment of your health. Before you make any changes to your treatment or medications, speak to the appropriate doctor in charge of your care.

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