14th March 2008
Hi Sadie'smom....Im sorry you are having such a hard time right now. In answer to your question- YES it is perfectly normal to be going thru a rollercoaster of emotions at this time...being sick, or hurting is bad enough...and its terribly frustrating to be told "its all in your head' or making you feel like a hyperchrondriac- but even when you find out its legit, and real, when it has a name- its a whole new set of emotions.
MS is scary, mostly because its probably the last thing you expected to hear.
And, because not so much is known about the disease, youve probably heard a ton of horror stories about MS...most of which are NOT true. Since you are already familiar with health boards, I hope that whatever boards you have been on in the past have given you as much support as you will get here. We are a great bunch, as far as being knowledgable and being able to answer questions- we are also very much like an extended family..welcome to our family, Sadiesmom.
To talk about the drug, Copaxone...isnt your neurologist setting this up for you? Normally, they do the leg work, getting the insurance issues straightened out and getting the information to Copaxone and whatever pharmacy is going to be sending you the drug....at that time, a rep from Copaxone should contact you to set up a home appt- at this time, they teach you how to inject, answer all your questions- actually help you with the first shot and stay with you long enough to make sure that you arent going to have a reaction to it....of course with Copaxone, reactions are incredibly rare. The other drugs, the interferons (avonex, betaseron and Rebif) tend to cause more reactions because they are much different. Im on Rebif.
So, anyway, have you gotten any feedback from your doctors office on whats going on with the Copaxone? You really should have them take over the responsiblity of getting you started....youre under enough stress right now.
You need to give yourself a break...the "acceptance" stage of learning you have MS is in your future...right now, its still the "oh my god' stage (shock). Its no wonder you dont feel like being social- Im married, work fulltime, travel for my job, have 3 stepkids and a needy husband- I have absolutely NO SUPPORT at all except for here...if you feel that you need more support then you get at home, stay tuned- you'll get all you want here!;) But its also a really good idea to look into a newly diagnosed support group...the MS society can help you find one in your area. Even if you only go a few times, being around others who are in the same boat can really help. I went for about 6 months, once a month- and it did help me thru some rough times, but due to my traveling schedule, i found it so much easier to log on from wherever, and look for "friends' and support here.
One day at a time..ok? I promise, it gets easier....
Hugs
Nikki
MS is scary, mostly because its probably the last thing you expected to hear.
And, because not so much is known about the disease, youve probably heard a ton of horror stories about MS...most of which are NOT true. Since you are already familiar with health boards, I hope that whatever boards you have been on in the past have given you as much support as you will get here. We are a great bunch, as far as being knowledgable and being able to answer questions- we are also very much like an extended family..welcome to our family, Sadiesmom.
To talk about the drug, Copaxone...isnt your neurologist setting this up for you? Normally, they do the leg work, getting the insurance issues straightened out and getting the information to Copaxone and whatever pharmacy is going to be sending you the drug....at that time, a rep from Copaxone should contact you to set up a home appt- at this time, they teach you how to inject, answer all your questions- actually help you with the first shot and stay with you long enough to make sure that you arent going to have a reaction to it....of course with Copaxone, reactions are incredibly rare. The other drugs, the interferons (avonex, betaseron and Rebif) tend to cause more reactions because they are much different. Im on Rebif.
So, anyway, have you gotten any feedback from your doctors office on whats going on with the Copaxone? You really should have them take over the responsiblity of getting you started....youre under enough stress right now.
You need to give yourself a break...the "acceptance" stage of learning you have MS is in your future...right now, its still the "oh my god' stage (shock). Its no wonder you dont feel like being social- Im married, work fulltime, travel for my job, have 3 stepkids and a needy husband- I have absolutely NO SUPPORT at all except for here...if you feel that you need more support then you get at home, stay tuned- you'll get all you want here!;) But its also a really good idea to look into a newly diagnosed support group...the MS society can help you find one in your area. Even if you only go a few times, being around others who are in the same boat can really help. I went for about 6 months, once a month- and it did help me thru some rough times, but due to my traveling schedule, i found it so much easier to log on from wherever, and look for "friends' and support here.
One day at a time..ok? I promise, it gets easier....
Hugs
Nikki