Ah…the RED TAPE……Catch 22…..

I had probably been having seizure activity since birth, but had gone undiagnosed until after my cancer treatments. After the final treatment the seizures kicked into overdrive. At first it was somewhat manageable. Soon, I was found wandering campus with no idea where I was, and being asked to step down for fear of having a seizure in front of the kids. He was right, of course. I would not have wanted them to see me like that. I hated the idea of leaving work. From there. it became unmanageable. Before long I was having every day, several times a day. My roommate knew the signs and would have me lie down and handed me medicines. This went on for a number of years.

I saw three neurologists that came to the same conclusion, they had tried every known treatment, conventional and unconventional. They each released me from their care to have my family doctor maintain my medications. That was nine years ago.

I waited for year for the medical cannabis program to come to Illinois. I patiently waited for months for news that the registration was open. I talked to my doctor. He agreed it was the last option. I read everything I could get my hands on. I started to have some hope. The more I researched, the more I believed this could be a good choice. weeks passed. I filled out the application online with great difficulty. I reached out to disability advocates for help with the process. I collected the forms and papers that the state needed. I brought the forms to my doctor to fill out. It said on the form “DO NOT HAND TO PATIENT.” He sealed it in an envelope and gave it to me to mail, which I did the next morning.

Two months passed with no word. I started to get worried. I tried to log-in to the state website with no luck. Two weeks ago I got a letter that said the state needed my fingerprints scanned again within 10 days as they are only good for 30 days. I thought that was odd. Even though I could not afford it, I came up with the $62 fee to have them scanned again. At this point I had spent a total of $180 in fees. I had a five hour window to get them scanned when the only person that does them in the area would be in town that week. I I get it done and into them by email and ‘snail male’ with three days to spare. The very next day the caseworker contacted me that they only needed the Physician’s Certification Form. (This was the form my doctor sealed in the envelope and I mailed. )

I immediately contacted my doctor to inform him that the state had misplaced the form and I needed him to fill it out AGAIN.  Within 24 hours I had four emails from the clinic stating that the had a new policy that would not allow any affiliated physician to fill out the forms for the Medical Cannabis Program. All but one of my doctors were through the network.  I contacted the neurologist that originally diagnosed me and referred me to my family doctor. He would be willing to fill out the form in question but he would have to see me as a new patient since it has been more than three years since he has seen me. He also had no opening for three months. (The Medical Cannabis Program only gives you 30 days to get the forms into them.) I spent hour after hour making phone calls to clinics and hospitals within a hundred mile radius. No one wants to touch the program. Doctors do not want to discuss it. I did find a clinic in Chicago, but they do not take insurance (questionable!!) and charge $200/ visit and requires two visits minimum.

I am not sure where this leaves me.



UPDATE: 9/10/2016

I decided on taking the chance and driving all the way to Chicago to see the doctor that specializes in medical Marijuana patients. I had to pay out of pocket for one of the two visits needed to satisfy the state of Illinois.  Within a few weeks I had my card in hand and was legal to go into the dispensary, which is an hour from where I live, and obtain the eighth of an ounce of the bud that we think was best suited to my needs. Of course, this is also out of pocket. No insurance will cover this. Now, I have been taking a small capsule of the bud infused coconut oil I make myself here at home which is approximately 4 mg. of THC  and 6 mg. of CBD.

I have been functioning better since I have been using it. I still have seizures a few times a week and I still am unconscious for long periods of time; however, I am able to get more out of life in the times between seizures.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s