6/11/13

A couple weeks ago I was approved for disability benefits. I was (and still am) a bit hesitant to write about it because I'm not sure how to take the next step, or what the next step may be. Although, I'm very grateful and I'm in need of help, I can't get the skewed thought out of my head that I'm being paid to be sick. What I owe in medical bills far, far, far exceeds the amount I'm receiving, but it still doesn't erase the black eye on a proud man.

Right now we're working with Northwestern and Mayo Clinic to start a new round of treatments called IVIg (Intravenous immunoglobulin), which is a product extracted from donated blood plasma. Even after a thousand hours online and several days worth of explanation, I'm still a little bit hazy on how this will work for the treatment of my particular kind of Epilepsy. Although I'm a bit uneducated, this doesn't stop me from saying yes to even the slight possibility of seizure reduction.

I'll keep reiterating the fact that, although my seizures are still frequent and strong, what's most important to me is my state of mind. Everyday I have to look at the scar on my wrist and when I notice it, I try to put myself back to that moment and what was going through my mind the second that I decided that the only way for me to release the tension and quiet the voices in my head would be to open a vein. This is a dark subject, I know, but if I can't communicate these issues then they fester and then the scar may never go away.

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I've had two very brave people tell me that they've given blood in the last couple of weeks and I want to thank them and call on others to do the same. The treatments that I'm about to receive require blood from thousands of donors, so just imagine how many other people are going through similar treatments and, given the recent tragedies in our county, how many more people you can help. When I'm well again, I will make it a point to give blood, but for now I'm calling upon you. Thank you.

http://www.redcrossblood.org

Disability Approved

Yesterday I received confirmation that I was approved for Social Security Disability benefits. This means several things to my family and I, more than just money. Of course, we'll be able to live and pay some of my medical expenses, but it also means freedom. By freedom it means that I'm no longer just sick and unemployed; it means I'm a human being that has been recognized by the higher powers that needs help doing the everyday things that a lot of people take for granted.

After hearing the news, I had a very strong seizure... irony at it's best. This was the kind of seizure that lasts for hours; I'm comatose and generally slow to respond, staring at walls and such. I've noticed that it's not at the moment of stress where I have a problem, it's when I'm coming down from stress. Deep down I must've been very worried about the disability business because it happened almost immediately.

Now that I have this freedom, I have to make plans for what I'm going to do with my time. Of course I have a new IVIg (Intravenous Immunoglobulin) treatment coming up, but after that I'd like to insert myself into a small percentage of society. I see myself volunteering, using photography more to convey what my life is like, the list is short but growing. There's a lot to think about when it comes to this, so while I'm receiving the IVIg, I can hone the plan a bit.

Generally, I'm happy, despite the seizures. It's just nice to be accepted... in more ways than just a number.

I'll do some more research on this but I would like to, again, mention the donation blood or plasma.

http://www.redcrossblood.org

Thank you.

A Sprint

Last week Sara, my Mom and I made another trip to Mayo Clinic to see if the Methylprednisolone steroid treatments have improved the frequency of seizures (which we know it really hadn't), and if the abnormal antibody in my blood had been corrected in any way... again it hadn't. Our doctors used some very harsh words, like "failure" when describing the treatments which left us devastated.

At the very end of our meetings we reiterated that my mood and personality had greatly improved and if this was the case then it wasn't a failure at all. I explained to Sara that if I had to live the rest of my life with a seizure disorder, but as me, without the demons floating around in my head... then there would be some quality of life.

After we mentioned the personality change back to normal, the doctor ordered another neuo-pyschological test to see if that is the case. We couldn't get an appointment for that until June 3rd, but they said they'd call if anything opened... it did... this Thursday at 12:45pm. Now Sara and I are scrambling to pack and get up there tomorrow, so we both have time to settle before the test. These tests are very intense so I need to be in a good place mentally before they can begin and I can prove to them that there have been very noticeable changes.

After the test I will start a 12 week Intravenous Immunoglobulin (IVIg) trial. It's basically a blood plasma treatment from donor blood. Because this is from donor blood, I'd like to encourage those reading this to give blood or plasma in my behalf. Someday, I'll be able to give back, but for now I'm looking to people like you to get healthy. Thank you.

Right now it's so hot in our apartment and my mind is racing so I'm awake at 4:00am. I'm at the table in our dark kitchen writing and thinking, nervous and trying to find that peaceful place we all wish to find in our lives.

10 out of 12

So far I've received ten out of twelve methylprednisolone steroid treatments for, what the doctors at Mayo Clinic believe to be, autoimmune epilepsy.

On May 7th, the day after my last treatment, I'm scheduled to travel back to Mayo to see if there's been any improvement. There've been many set-backs, seizures and the like, but I'm feeling good about what we're going to hear. It could be because our trips to Mayo have been a nice break from our troubles at home in Illinois, and time spent with Sara and my Mom is precious. It may seem silly, but we've been calling our trips up there as our "Mayo vacation".

Both Sara and my Mom have been going through some tough times at work and I think they enjoy the opportunity to spend some quality time together. Now, because it's warmer maybe we'll actually be able to walk outside instead of always using the interconnected tunnels from the clinic to the hotel. Plus, we won't have to literally run from the car to our trips to Target! One thing that we all seem to unanimously despise about Rochester, Minn. is that they don't serve Diet Coke anywhere! I don't mind being poked and prodded, but no Diet Coke? No!

All joking aside, it will be nice to see what side-effects of the steroids will subside in the future. Insomnia has been a big one; it seems I'm always completely exhausted but unable to sleep and I've been pacing the apartment at 3 am. There have been some very scary moments, like last Saturday when I had three seizures in a row while visiting Milwaukee. We just wanted to take a couple days and relax but I guess that just wasn't in the cards. I'd like to say we learn a little more about what's going on with every new seizure but we've been left confused, disheartened and all around frustrated, even angry.

What I'm feeling right now, positive or negative, I'm not going to share because it's all the more frustrating when what I've been feeling turns out to be wrong.

About Last Saturday

Last Friday and Saturday I started a new medication with the hope that it would help my restlessness. Lately, I've had this inner feeling to always be moving, even though I'm totally exhausted.

I started the medication late last week; to be honest with you, I can't remember which day because as soon as I washed the pill down I started having seizures.

It's been almost five years since my first seizure. After the doctors got them under control I had lost a week; amnesia. On Friday and Saturday, the amnesia was back. I only remember things from last week in 30 second intervals, like waking up at 4:30pm, thinking it was 4:30am and asking why my family was here and why the sun was up so early. I don't remember eating, drinking, using the bathroom, showering, or any other normal routine. This is just a case of "over-medicating," but it's deeply disturbing that a little pill the size of my fingertip can color my world black.

Day Long Seizure

Last November, I had several very strong seizures while admitted to the Mayo Clinic video-monitoring unit. One of the seizures lasted 9 minutes; to put this in perspective, it takes 5 minutes to cause brain damage.

Today I had one, long, all-day partial seizure. With this one, my personality changed, I hallucinated, heard voices, I argued with my family about trivial things.

Based on today's seizure(s) and the one last Monday the 18th when I called Sara and stood by our window, explaining in gibberish what I was seeing, (I attached below is a link to the audio voice recording I sent Sara.) it's pretty obvious that there's something wrong; something different.

(I'm heavily into the postictal state, seizure hangover, right now).

I attached a link for you to hear the voice message I left for Sara while having a seizure (could be disturbing to some):

Click: Jeremy's Seizure Voice Message

The Wall

I took an inventory of the medications that I'm putting into my body and we're at nine; not including the steroid treatments on Mondays. With all of these chemicals floating around, I've obviously been experiencing a wide variety of side effects. On Monday I finally hit the "wall."

On Monday night, after I wrote my last post I had a very strong seizure. This one was especially unsetting because, while I was unconscious, I was walking around my bedroom, I approached our windows and called Sara who was in the next room with her aunt. I left a rambling message about the street and then my voice stuttered until I hung up.

I don't know what to say about this but I know I have to share because I'm genuinely afraid of where things seem to be going. Standing next to windows while having a seizure? How can this get any more disturbing?