EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Apr 27, 2008 Posts: 66 Location: Los Angeles, CA
Posted: Sun May 18, 2008 12:01 am Post subject: Waiting for an appointment...
Well, JH has had my records since the first week of May. I hounded Carrie for quite a bit (phone calls and emails)...then she finally told me to contact Dr. Hammond directly. I spoke with him on Thursday(May 15), and he told me that I was a good candidate...but that right now there was a wait to get that initial appointment. I was VERY excited to hear that I was a good candidate, but totally bummed that they could not give me a firm appointment date. Well, he said he could give me a date, but it would be 6 months from now. He said they were trying to get people in faster. I told him, in no uncertain terms, that my bags were packed and they could call me anytime and I'd be on a plane and in their offices in 6 hours (well maybe 7! I'm in CA). I'm dead serious... I can't get to JH fast enough, as far as I'm concerned. I told Dr. H that ideally, I really want to have this done over the summer - by mid-August, as that is when I can definitely secure people to come stay with me (aka take care of me). I can probably manage to have someone with me if it happens later than that, but it will be much more difficult.
So, now I wait. I just read some of Chris' posts where he says to stay on top of them. I worry that I bugged Carrie too much. Hey, I'm an "aggressive New Yorker" (currently in CA...but still a New Yorker by heart). So - how much is "too much" when it comes to staying on top of them? How often can I call? I mean, I'm prepared to call someone/anyone every hour if it means I can get an appointment ASAP!!!!
Every day I feel a little worse in one way or another. I just had my second Tysabri infusion a week ago....but as far as I'm concerned, Ty is a bandaid and it isn't enough for me.
Hmmm, what would happen if I just showed up at JH??
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Sun May 18, 2008 9:08 am Post subject:
Part of me is anxious to get this done asap, another part is more than willing to wait. I guess I see it as, I am not dying of cancer. MS sucks sure! but I am doing fine everall, my legs seem to get getting funky which is a concern but I just had a baby.. yep the good ole post partum flair.
I guess because I had this disease for so long and only EDSS 1.5, I just dont think I will be drooling and in a wheelchair 6 months from now. I think people who are newly dx panic, which is understandable.I was there once too.
Calling dr. hammond tommorow, he was expecting a post partum flair so I might be able to get in sooner. If not, no big whoop.
Joined: Apr 27, 2008 Posts: 66 Location: Los Angeles, CA
Posted: Sun May 18, 2008 10:31 pm Post subject: Don't want to wait
Jamie - so glad to hear Melissa is doing well!! Been thinking about her a lot here.
I went away for the weekend. While I had a "good" time, I was mostly miserable b/c of this dang illness. I don't want to be sick. I don't want to have to ride around in a scooter because I can't walk thru Sea World and I don't want to have double vision and vertigo just b/c I get so hot being outside! This just sucks.
See, 777, that's the difference between us - I don't want to wait, I can't wait. I don't see myself enjoying a summer with this disease on my tail. Of course, if I had a new baby in my arms, I'm not sure if I'd be running off anywhere, either.
However, I don't have a new baby. I want a new baby. I need a newly rebooted immune system before I can or will go down that route. Thus, I need to be at JH NOW!!
Did I say NOW? Because I mean yesterday. Yeah, yesterday.
Probably going to call Dr. Hammond (he told me to call him Ed) tomorrow. Want to stress how I am going downhill and that I am not planning on waiting 6 months to see if the Tysabri kicks in. Even if it "kicks in" it isn't good enough.
My friends plan on sending letters to the doctors at JH stressing how my life has drastically been limited from this disease in such a short time and that I'm too dang young to have this be happening to me and they don't plan on sitting around and waiting for something to be done Don't know if it will help - but I think putting a "face" to my name, so to speak, might help....might make me more than just another case to the doctors.
I'm 32, my life is really just starting to take off and this shitty disease struck. I have worked too hard to get to where I am for this MS to steal away my life from me.
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Mon May 19, 2008 8:51 am Post subject:
too bad, you could go by the hysterical family.
I got a call back this morning, so I am going in June. My sister in law got a call back before mothers day, she said she is going sometime in august, I dont know the day.
You have to realize there seems to be a lot of people who want this treatment. if someone needs it before me I would glady give up my spot, but it's not my decison.. you have to trust them to make it. they have our records.. I certainly dont think I need to push myself to go in before others.
Red seems to think she is more important than others who suffer from MS. Sad
If she were on a sinking boat, I pity the children that would probably be pushed off so she could save herself.
Joined: Sep 11, 2007 Posts: 488 Location: southern California
Posted: Mon May 19, 2008 9:22 am Post subject:
Hey Keri...
I think there's a bit of trolling going on here. Just be careful.
I'm not sure I believe any of the above "statements" ...seems a bit coincidental and cruel.
I think it's amazing that your friends are looking out for you and writing letters. I know how quickly this disease is moving for you, and I hope you get in to JH soon.
The heat in socal is tough, and will surely make you feel worse. Keep cool and hydrated and crank the air con. We learned this the hard way last summer. The electric bill is higher, but it's worth it.
Thinking of you and keeping positive thoughts for your admission to JH-
the aging and protective cheerleader.
AC _________________ Husband diagnosed RRMS March 2007
20 lesions brain/spine
Copaxone, Swank, supplements, laughter
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Mon May 19, 2008 9:31 am Post subject:
nobody is trolling and nothing is coincidental and cruel. I talked to Dr.Hammond when I was pregnant in december, I had a 8 month attack. He is aware of my situation but I was pregnant at the time, I didnt get my MRI until 2 months ago I waited and waited and waited like everyone else, I even called 2 times still waited.
I am having another attack, post partum. My sister in law didnt even tell me she was conatcted until I told her I was. She cant even stand up sit down, she can only lay flat. she is so bad she needs to get there by angelflight
what do think is, her post is insenstive to others waiting politley to be contacted.
According to chris there are many people calling JH for treatment. Of course there will be a wait.
Absolutely not. Good for Keri. The good Lord helps those who help themselves.
777-
Maybe you need to get worse so you feel important enough. Me personally, I'm the most important person I got, there is no one more important than me, so I deserved to get better and no one else did until I was.
Now that I have the log out of my eye I can help get the speck out of my brothers.
Joined: Apr 27, 2008 Posts: 66 Location: Los Angeles, CA
Posted: Mon May 19, 2008 11:52 am Post subject: Wow...and ouch!
Well, I've never been flamed before. And I certainly never expected to be because I'm pushing for a treatment and advocating for myself! Yikes.
To clarify, though this isn't something that I thought needed clarified because I never said one thing in this realm to begin with, but for "argument's sake":
I never said I was better than anyone else or more deserving of getting an appointment or receiving this treatment.
I simply commented that I was going to do everything I could do get in as soon as I could. That is called advocating for myself - or sometimes you get lost in a sea of people, so to speak.
I also believe that it is up to me to advocate for myself. I didn't know my friends were going to want to step up like this (from willing to take off of work and travel to take care of me, to offering financial support to have the treatment, to now wanting to let the doctors know how important this is to all of us). It is up to each of us to advocate for ourselves.
My new favorite tagline is:
It's my life + It's my MS + It's my disease + It's my body = It's my choice!!
I was also responding to your comment, 777, that you could wait and weren't in a hurry. Well, I'm in a hurry! You were the one who yourself said that you were doing fine "everall". Well, I'm not doing fine overall.
I'm not sure how my posts were insensitive to anyone...and if they were, I am sorry to hear that - but it certainly does not change how I feel. I will get to JH. I will have this treatment. I will do everything I can to facilitate this happening, and as soon as possible. And I will not apologize for that.
As for your comment about being on a sinking boat - now that was uncalled for. You know nothing about me, other than that I struggle with MS and want this treatment. None of that makes me a bad or evil person. I'm actually someone who has dedicated her life to working with and helping children. Fortunately I am strong enough to take your comments and toss them where they belong (in the trash)....because I know that is not who I am....it's more a reflection of your bitterness (and/or whatever else going on with you).
Chris - thank you for your posts....and I will take that as a compliment....and shhhh, we won't tell Chenelle!
Jamie - I wish I had known more about HiCy as an option a few months ago. I spent a lot of energy getting onto Tysabri - that I could've used to go to JH instead....and probably would be having my treatment now. Oh well - like I said - this summer would be great for the treatment. I'm hoping it will happen.
AC - thank you for your positive thoughts! My electric bill is already out of control and always has been. It will probably be much scarier this summer...but I will deal. This weekend it was in the triple digits. And it's only mid-May. Ugg. It's gonna be a rough one for all with MS out here!!
Heck it's rough if you don't have MS!
Okay, that's about it...except I'm continuing on this road and doing my best to get to baltimore asap!
Again congrads on deciding you do not want this disease anymore and doing whatever it takes to stop it.
Your equation couldn't have hit the nail anymore on the head and I guess we will be killing woman and children together. I'm not a Captain so I will be damned if I'm going down with the ship.
All times are GMT - 6 Hours Goto page 1, 2, 3, 4Next
Page 1 of 4
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
He said they were trying to get people in faster. I told him, in no uncertain terms, that my bags were packed and they could call me anytime and I'd be on a plane and in their offices in 6 hours (well maybe 7! I'm in CA). I'm dead serious... I can't get to JH fast enough, as far as I'm concerned. I told Dr. H that ideally, I really want to have this done over the summer - by mid-August, as that is when I can definitely secure people to come stay with me (aka take care of me). I can probably manage to have someone with me if it happens later than that, but it will be much more difficult.
LOL
