The OCD, What If "Amber" Makes An Appearance

I found a wonderful support group on Facebook that battle with chronic migraines and other medical issues on a regular basis. For a long time, I thought I was the only person that had to suffer day in and day out with these debilitating migraines. I was really starting to think that I actually was crazy. I was told by so many people that it is all in my head, if I got rid of all my stress, I would feel better, etc. NO!!!! I know my body, and I know when something is not right. When it got to the point that I was calling in sick to work more than I was going to work, I knew that things had to change, but how? I applied for Short Term Disability with The Hartford, but they didn't think I would qualify because "migraines are not a disability", but once they reviewed my medical records, I was approved for 6 months of STD. No way, did I ever think that I would be out of work for 6 months because of migraines. Are you kidding me? Six months flew by pretty fast and I wasn't anywhere closer to returning to work than I was when I went on leave.

I was approved for Long Term Disability through The Hartford, which is valid for one year. In order to apply for LTD, I also had to submit a claim to Social Security for disability. I did all of the above. I received the denial letter from SS on Christmas Eve, but I didn't let it discourage me. I was told that nearly everybody is denied the first time they apply. I contacted the Hartford a couple weeks ago (I had kind of forgotten about the SS claim) to let them know I had been denied. They told me that they have The Advocates available to offer me assistance, so they got me in touch with The Advocates. When The Advocates called me, I learned I had 60 days to file an appeal, and since I took so long to notify The Hartford, we would have to work quick.

The Chronic Migraine Awareness (CMA) support group has been a godsend to me. They validate me and completely understand what I go through day in and day out, because they are in same boat as me. It is great to have people that understand you. Their words of encouragement have given me strength when I have felt that I can't possibly continue to live this way. I miss me. I miss the Amber that I used to be. I am not myself because I am in so much pain. I try to keep my brave face and smile on when I am out in public, because I don't want to appear as a complainer or anything else negative. It is hard talking to people about chronic migraine, if they have never even had one migraine. I have been accused of abusing drugs, which is understandable because I am not myself, but I am not abusing drugs. I am very cautious. I don't medicate for several of my migraines because you can get medication overuse headache (MOH), which is just as bad, if not worse than the original migraine itself. I keep track of all of the medications that I take. If I am home alone or wake up in the middle of the night and take anything rather it be phenegran, aleve, benadryl, valium, etc. I write down the date and the time that I took it, so if anything happens Rick, Jamie, or my Mom will be able to tell them specifically what I took, what time, what dose, etc. I also have a detailed medical record that has my name, birthday, height, weight, blood type, emergency contacts, list of all the medications I am taking and why, allergies, detailed list of all medical providers (name, phone number, address, and specialty), medical history, and surgical history. I keep a copy on fridge, in my purse, in my van, on my phone, and I e-mail copies to Rick and Jamie. I update it any time any changes are made. I might be a little neurotic, but I am so scared that if something happens, they won't know what to do. My girls know that if they have to call 911, they are to give the copy on the fridge to the paramedics so they can know quickly what they are dealing with (possibly).

The pages above are a small example of the detailed medical record that I keep updated. When I go to a new Dr, I just attach this to the paperwork instead of filling it all out. Yep, the doctors love it. 😊 Makes them smile!

Yesterday, The Advocates e-mailed me all the documents, already filled out. All I had to do was sign and date the pages that were highlighted. I quickly signed and dated everything that was needed and e-mailed it to them. I was then told that they handle everything, so I don't have to stress about it and focus on getting better. They only collect a fee if we are successful with the appeal. They told me that the money will be taken directly from the back pay that social security would pay me, if approved. So, everybody please pray, cross your fingers, do your voo-doo dance, whatever it is you do to help you.

I am going to Neurologist in a little while to get a nerve block. Hopefully it will work. He is going to inject lidocaine and steroids in different areas of my scalp. I will keep you posted. I am hoping for just a little reprieve so that I can go on a cleaning marathon tomorrow. My house is so atrocious. It is awful!!

I started a new tracking system to let medical team know how many good, moderate, and bad days I have a month. The red stickers indicate pain >9 was not able to function at all. Hibernated. The yellow stickers indicate I had a pain level between 4-8 and was able to function a little but, but wore out quickly, and had to stop for several breaks. The green stickers indicate a pain level <4, Had a productive day, felt great about all I got accomplished. The blue stickers indicate days that I was ultra depressed and consumed with guilt for not being able to do anything. I love this new system because I can quickly look and tell how great each day was. If anything significant happened, I will write it on the date in the weekly section. My PCP loved it. And yep, the OCD nerdy Amber found a way to color code something since I can't do it at work anymore (since I can't work). 

Until then... keep your fingers crossed and keep praying.

P.S. I have gone on the big girl potty twice today without having to cath!!