Thursday, July 16, 2009

I'm Being Infused with Energy...and Solumedrol

I'm at the MS Center for my monthly infusion of Solumedrol. I am actually a week late and I can really feel the difference with my fatigue. I have been literally falling asleep at my computer the last several days after inadvertently blowing off my appointment last week. More incentive to remember appointments. I'm thinking I need to win the lottery so I can hire a professional organizer to help me remember appointments...and pay bills.

The MS Center understands when you forget an appointment--after all, MS is a disease of the BRAIN. The gas company, however, is not quite so understanding. Although I had plenty of money in my bank account, apparently I am long overdue on paying my bill and received a shut-off notice today. I called up to pay the bill over the phone and learned that I had lost this privilege because it was SO overdue. Then, when I tried to pay online, I was told that I would have to wait 7-10 days until my checking account was validated. The customer service person I spoke with was no help whatsoever and could not guarantee that it would not be shut off this evening. My only option is to go to one of the in-person payment sites, which I guess I will have to do. I'm not sure when, though, and I'm thinking I can get by without natural gas coming into my house for a few days.

Uh-oh. I just remembered that I invited a friend over for dinner tonight and, you guessed it, I have a gas stove. Hmmmm. Maybe I can make chicken on the George Forman Grill and pay the bill tomorrow? I'm not TRYING to be a scofflaw but I will be hooked up to the IV until 4:30 and then I have to take the train home which takes about an hour.

When these kinds of things happen, I feel like a total LOSER. I am 45 years old, work a full-time job that pays a living wage, and my gas may be shut off.

I need a professional organizer to help me figure out how to do this stuff regularly, consistently, and on time. Maybe I can barter my marketing/PR writing skills in exchange for some sessions. Hmmmm. Ok. This is one of those "this is not the least bit inspirational it's just me bitching and moaning and updating my status" kind of posts. Forgive me.


  1. Hi Julie

    Hopefully the gas company didn't get it together to shut off the gas--how frustrating but I can relate. I've got a question for you re your monthly IV. How many days are you doing each month and for how long? Are you doing any other MS meds?

    I ask all of this becuz I have been doing monthy IV solumed for 6 months now. Initially I was doing the IV for 3 days, but becuz I disliked / worried about that much steroid that often it was moved to just once a month. I also am copaxone--yikes huh. It is hard to know how effective it is being. I would really apprecate talking w/ someone who is also doing a similar protocol

    Thanks GG

    You can reach me via my email

  2. Hi Julie,
    Egads! A turnoff notice! I've only forgotten to pay my credit card twice and got hit with a $29 late payment fee each time. If it happens again, my interest rate will shoot sky high! That's when I started setting up automatic payments of at least the minimum due. It really takes the worry out of it for me. I have it on utilities, phone, and cable, too; besides, it saves money on stamps! (Sorry Postal Service)

  3. Yes, auto- and ebill- pay and google calendar save my a$$ on a monthly basis.

  4. Thanks, everyone...those of you who could relate and make me feel better about the shut-off notic and those who could not and permanently shamed me into automatic bill pay. ;-)
    Re: Solumedrol. I get it one day every four weeks. I've had it for the last six months and my neuro and I decided to continue it because it is helping my fatigue. I also take Rebif three times a week...when I'm not rebelling. What a deliquent I am--pharmaceutically and financially.
    Lazy J

  5. Dear Ms. Julie,
    Thanks for your blog. I have been sick all my life and my doctors were unable to connect the dots. I used to think my symptoms were in my head; well I guess they are but in my brain.

    Finally, I was referred to Dr. Eubanks at MGH Chelsea who tested me for syphilis, Lupus, and Lyme Disease because I have been complaining of reduced vision; severe memory loss back pain, & pain, pain. Like you I felt very relieved that I don't have syphillis but was dispaointed to find out that I didn't have the other two.

    So smart Dr. Eubanks sent me for a brain MRI that revealed brain lesions and she quickly proceeded to refer me to Dr. Misha Pless.

    I will be meeting with Dr. Pless on August 6. The wait is escruciating. I wish August 6 was today. I don't know if I have MS or a brain tumor. I have a history of head and neck tumor and had radiation treament and so on for that. I am very active but find myself very tired at the end of the day.

    Please tell me how long did it take for you to get a definite diagnosis; what were your questions to Dr. Pless. Good Luck to you!