Tuesday, May 02, 2006

So kick me when I'm down I suppose.......

So yesterday when I got my mail I was very disturbed. There was a letter from my MS specialist telling me that she was sorry but she will no longer be my doctor as she is moving to Boston. WTF!!!!!!I mean I understand her husband had a job offer that he would have been a fool to pass up. So I was very distraught at this fact....meaning I was in tears all day. With BTW NO ONE to talk to about it. I figured I could call my mom and she would at the very least console me...NOPE wrong. I understand she was busy and maybe to "normal" people losing a doctor is well no big deal...But she wasn't just my doctor she was my lifeline if you will. After going through bad neurologist after bad neurologist I felt as though I had found what I needed in her and now that is all GONE!!! I'm scared to death about the rate of progression I have and the fact that now I have no doctor doesn't make that any easier to deal with. Yeah okay there are 3 or 4 other terrific MS specialists at my dr's office..yada yada yada....but I don't know any of them and like I already said I have had a lot of bad luck with neurologists so I'm scared. So now I'm at a loss at what in the hell to do.

On top of all this I feel as though the chemo was a freakin waste of my time. First of all never but once have I been sick from it and I just happen to get the flu that time.Well this time a week later I'm still feelin like shit haven't been able to do much as a mother through the week. Thank God my kids LOVE sandwiches because that is pretty much what they have been eating for dinner for a week. To top this all off I should have known to trust my women's intuition about having the feeling that I just didn't need this chemo this time. Before chemo A much happier able to walk A LOT better Amanda...after the chemo a much more depressed difficulty in walking along with pain Amanda. I'm sure there are many other factors contributing to the depression. I just think that maybe I should not have taken this chemo........


Blogger Jaime said...

Didn't you mention that you recently started taking Avonex again? I was thinking at the beginning of the month you mentioned that. Anyway, I know that the Avonex (at least for me, and my doctor warned me it was a common reaction for the first little while) makes me really sick. The first couple of months (I started in Feb) I had the flu and chills really bad. That is better now. I don't seem to have the flu symptoms and the chills are only every once in a while. The pain has always been there & hopefully it will get better but it could be worse for me because I have recently found out that I have some bone problems, which would contribute to my level of pain. I have heard of all kinds of things with the Avonex, and I have not had it easy myself, but the one thing I have heard a lot is to stick with it. Also, I recently learned that when you stop it, even for just one dose (at least this is what happened to me) the side effects seem to be really bad when you resume taking the injection. This weekend when I did my injection (and I only missed the one) my side effects were as bad as they were, almost seemed worse than they did with the first injection. Stick with it and it will get better.

I am sorry to hear about your doctor. That SUCKS! I can understand how you feel. I just found out one of my doctors is leaving his practice (my PCP). It is such a pain to have to try and find a good doctor who takes the right insurance and can meet all your needs. I have asked mine to make sure that he refers me to someone he trusts and knows is good. I plan on securing an appointment with that doctor right away to make sure I get established. As much as it is a pain, I am sure your Neurologist can refer you to someone he/she trusts. He/she may even be willing to call the new neuro to make the referral and go over your case.

I hope things get better for you real soon. You will be in my thoughts and prayers. If there is anything I can do (I used to work in medicine, I can find some resources for you, get info on doc's if you would like) please let me know. Take care.

10:50 AM  
Blogger amanda said...

Oh thanks soooo much for the kind words lord knows I need as much as I can get right now. It seems to me (mind you I do KNOW that I am depressed)that everyone has just left me abandoned me if you will. My mother included and she is one if not THE biggest support system that I have.

As far as the Avonex thing I have never had any side effects from it and this is my 3rd time on it so I know that is not what this "sickness" is. I'm almost positive it is the Novantrone.

As far as my dr. situation goes I'm just trying to sit back and relax and give myself some time to calm down about the shitty situatuation that I find myself in. There are numerous other MS Specialists at this office 2 of them I would love to have them be my dr. as they are familiar with my case because my dr. has consulted with them numerous times about me. Even still it is scary and it will be 8-12 months before an appt. with either of them is available. So now I'm just going to continue to see her nurse practioner (whom I love) and see what happens from there..I need to stop stressing because my body is definetly taking the toll of this stress

10:18 PM  
Blogger Jaime said...

I am glad to hear that you don't get side effects from the Avonex, they really SUCK! but, it doesn't sound like the ones you get from the Novantrone are any fun either. I hope they let up really soon.

I was surprised to hear that it would take you almost a year to get in with one of the other neuros, that is nuts! The bonus of staying in that office is that they are familiar with your case, they are great docs, and you love your nurse practioner. If anything does come up she will always be able to get you in with one when you need them. :)

As always you are in my thoughts and prayers. Please take care and try and get some stress free time for yourself.


4:05 PM  

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