Wednesday, October 9, 2013


I've had a busy few days. Quite busy in fact. I'm trying to get involved in the local LGBT community and have been going to a couple support groups as well. I don't want to feel the way I did Saturday ever again so I'm trying to ease the sense of isolation. I miss the LGBT community a lot. I used to be quite involved in the SF and East Bay communities.

I started Imunovir after a kind, generous person sent some in the mail thankfully. There's no way I could afford that expense right now. It's working though! After being on it for about 10 days I can report definite improvement. This is a keeper so I'll order some from a Canadian pharmacy in January. It's about $120 a month.

I also started a low dose of liquid Doxepin Sunday night and was able to sleep the entire night for the first time in over a week. I'm hoping it will also increase my appetite. Based on past experience I know the Doxepin will stop working but I have Trazodone and will take that. The only problem with Trazodone is I feel depressed the next day. But sleep is critical. Especially right now.

I'm almost up to the full dose of Prazosin. It has helped me with the early morning (3-5 a.m.) awakening that I dislike so much. Because it increases my heart rate I'm also taking Ivabradine twice a day. It's taking awhile to find the correct dosage. My goal is to get my heart rate down to 90 consistantly. It tends to hover around 100 beats per minute which isn't good for the heart.

This government shut down/debt ceiling stalemate is infuriating. I can't watch the news because I get so frustrated. If Congress doesn't agree on the debt ceiling by October 17 they'll stop sending out social security checks and stop Medicare payments. I'd like for all the Tea Partiers to get serious case of M.E. I'd be more than happy to donate my blood to them.

Medication Issue-I dont' remember if I updated or not. Medicare Part D covers up to $2700 per year. After than you fall into the coverage gap where the next $4000 comes out of your own pocket.

I called the company I signed up with and found out I have less than $800 left for the remainder of the year. I was hoping I was wrong about how much I had left to spend. In the next week I'll make decisions about which meds to keep and which to stop until January. It's a little scary.

My brain has been absolutely nonfunctional at times. Monday morning I was trying to redo my budget. I couldn't figure out how to use the calculator. I couldn't figure out how to multiply. I finally got it but it was a little unnerving to have it happen. It's never happened to me before.

Last night I met someone for dinner. While driving to the restaurant I got turned around and lost. I became flustered because I hate being late. My brain stopped working. I didn't realize I had stopped right in the middle of an intersection until I heard the car horns honking. At first I couldn't figure out why then realized. Oops!

Yesterday late morning a woman was giving me her phone number. I was trying to add her into my contacts on my Iphone but could not figure out how. I just looked at it and couldn't figure it out for the life of me so I had her write it on a piece of paper. I was a little embarrassed but joked it off.

Because of the kindness of people in the M.E. community as well as my sister I was able to fill up the gas tank on my car. And, I don't have to worry about not having to buy food the last week to 10 days of the month. Not only that but I was able to pay off the rest of the dental bill and paid a little extra to the colon surgeon.

Each month I run out of money about 7-10 days before the next SSDI check so I stopped buying Ensure and Boost as a way to take in extra calories. That will help a little.

Somebody sent me a care package and a card. I've never met this person but she too suffers from M.E. What she wrote on the card and what she sent me were perfect. Here was someone I'd never met but who picked the most perfect things (she had contacted me at the email address on this blog) and wrote a wonderful card. It moved me to tears.

She also gave me hope. She is now in a relationship with someone who can see past her M.E.

I still feel a little shaky emotionally but am getting good support. My goal is to get through Winter. My housemate said it gets really gray and foggy here during that time. Fog and rain don't mix well with me so I'm setting up plans to get through it. I'm hoping to take a couple trips here and there to get a break from the grayness. If I can tolerate it I'd love to take Amtrak and go see my Dad. I'd also love to go to the Palm Springs area to see how it feels. He's still retaining fluid even though he's on diuretics. He sees the nephrologist Friday to get more test results.

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