update regarding MS (cancer mentioned, not me)

update regarding MS (cancer mentioned, not me)

Joined: January 27th, 2003, 11:09 pm

January 17th, 2012, 1:41 pm #1

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
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Joined: February 22nd, 2006, 4:05 am

January 17th, 2012, 3:41 pm #2

whether IRL or online and if I lived close by you, we would be visiting and talking about our health and other issues so while I understand where you're coming from, there are so many of us on here who are your friends and we want to know and to be there for you.

Your friend may have given you good advice but in the end, you have a support group here so pls feel free to post, vent and give updates here. I for one want to know and give support. Heck there are times when I need support or will need it too.

So glad that your mom is visiting and that you're doing much better. Hugs to you.

Z.
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Joined: January 27th, 2003, 11:09 pm

January 17th, 2012, 5:04 pm #3

Oh Z...when I said I wasn't going online, I meant I wasn't going to be seeking out new information or support specifically for MS patients. I didn't meant I wouldn't lean on you guys here. Gosh, what would I do without you all? These boards have been such a help to me for over a decade now, and that won't change. I'm not really going anywhere, just trying to find some more reserves of strength inside. I will continue to post about it here sometimes, if people don't mind. I will make use of the subject line, so folks can avoid it if they want or need to. Thanks, my friend. I wish we could get together in real life.

Love,
MM
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Joined: June 24th, 2005, 12:12 am

January 17th, 2012, 5:43 pm #4

Oh good, I was hoping that's what you meant! We are here for support around the medical and MS stuff, and we are also here for the whole rest of the craziness of your life, family, kids, and latest fashion do's and don'ts, too!



me:smc (single mom by choice)
FSH: 16
Dd: Conceived when I was 42 after 2 years ttc. Conceived on 6th IVF cycle after 2 bfn's and 3 m/cs.

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me:smc (single mom by choice)
FSH: 16
Dd: Conceived when I was 42 after 2 years ttc. Conceived on 6th IVF cycle after 2 bfn's and 3 m/cs.

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Joined: March 12th, 2008, 1:22 pm

January 17th, 2012, 7:02 pm #5

...we are always here for you, MM. And many's the time I've wished we could all be there for each other IRL too...what a wonderful neighborhood that would be.

xoxox,
k.
P.S. Just to remind you that my aunt has MS...has had it since her 30s, is now mid-60s...served as a lieutenant with police force, and victims' rights advocate (busy, active, stressful)....skiis, does yoga, swims, travels...has three kids, 10 grandkids...and no, she doesn't blog.
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Joined: February 20th, 2006, 11:35 pm

January 17th, 2012, 8:18 pm #6

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
And don't worry about being cheerful. I get slightly annoyed sometimes by the attitude that people who manage long-term physical issues are expected to be upbeat and somehow set an example, or be an inspiration....when in reality, sometimes these things really s*ck, there's no beating around the bush. The main thing is you have some good medical resources near you, you have a good support system, and you have us!! Always here to hear you out, whether you feel like venting or are seeing the sunshine and want to share.

xoxox
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Joined: January 1st, 1970, 12:00 am

January 17th, 2012, 9:05 pm #7

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
I guess it's smart to be stingy with the down times, though. I know that if I only focus on what gets me down, it's hard to pull myself out of that funk.

Laughter -- lots of laughter! (Wonder if there is a laughing club near you?)

(Some of the darkest humor I've heard comes out of disabilities and chronic illness.)

Ever since a f/t colleague decided to share all the departmental gossip with me about 1.5 years ago, I've noticed that my attitude about my job and my co-workers has soured tremendously, so there's something to be said for taking breaks and limiting the negativity.

OTOH, I'm not saying you need to be an inspiration to us or anybody else. YOu might remember that I have an older sister with DS. IN fact, there are lots of disabilities and chronic illnesses in my family and it just sucks.

I guess I'm saying it's best not to go to either extreme.

But please keep us updated as you are willing!




Keiki's Makuahine (Keiki's Mom) 51, dh 52
Keiki: b. 2002 after 3 months bedrest
Natural conception following ZIFT/chem. pg

Olivia: b. 1999 d. 1999
28-week preemie, ptl cause unknown
Natural conception after 1 mc

ttc since 1998
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Joined: December 29th, 2006, 10:07 am

January 17th, 2012, 9:35 pm #8

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
us when you are miserable and not worry about the effect on us. This is what I love about this board is that you can be down in the dump and it is nice to just vent and maybe even hear stuff back that cheers us up, however small.

I totally agreed with your friend that you do have to be very careful about what you research online - I have made myself ill with worry, doing my own research because although there is lots of positive stuff out there, there is an awful lot of scary stuff and you can't help but think "oh, it this going to happen to me". Your doctors will be the best at giving you the most accurate information about your particular case and put your trust in them (obviously if you feel you are not being cared for adequately, of course, question and seek out better care).

and don't feel you need to put on a brave face if you don't feel like it as that is an extra pressure you don't need. Do take every chance to do stuff that you know makes you feel better and feel entitled to that luxury without guilt - things like avoiding the people that make you feel rubbish and enjoying the company of those that lift you, the movies that cheer you up or the books, of the coffee shop you like etc etc. This is the time to feed your soul (when you are dealing with an uncertain medical prognosis)

finishing with a big cyber hug.
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Joined: February 5th, 2009, 2:45 am

January 18th, 2012, 4:01 am #9

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
I hope you start to get some answers and positive news very soon. I may be moving back to the great little state and if so, would be happy to help you out however I can, although you obviously would kick my butt in the exercise dept. Good for you to be moving forward with such resolve!
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Joined: February 10th, 2009, 9:24 pm

January 18th, 2012, 5:42 am #10

Hi friends. Thanks again for your understanding and kind words after my last downer post that I ended up removing. I was pretty blue, because after looking around online for some positive stories, trying to find people who are doing well, you know, I realized that the people who are managing MS well (and I know there are many of them) are not the ones who tend to blog about it. What a downer. I don't mean to be disrespectful of the people who are disabled by the disease, as they certainly have plenty to complain about, but it's soooooo not a club I want to be a member of, you know what I mean? I felt the same way about infertility. The difference is that there are happy endings to those IF stories; whereas, MS doesn't really ever seem to end up well. Anyway, I wanted to explain myself a bit after my somewhat abrupt exit there.

A friend of mine who has pancreatic cancer (the Steve Jobs type...dire, but slow growing, he will be able to see his kids grow up) advised me not to go online at all about any of this. Just to trust in my doctors, which is the course I'm taking for the time being. I really can't do much research at all without being overwhelmed and I am trying so hard to stay positive. I am exercising hard every day. I want to be in really good shape if I end up getting back surgery soon.

The neurologist I saw at Johns Hopkins ordered repeat MRIs to see if more lesions have developed. He was thinking that if so, I might be able to avoid having a spinal tap. The MRI is unchanged, though, so I will have to have a spinal tap after all. Not exactly looking forward to that. I'm still not officially diagnosed as having MS, so no treatment plan as yet. I see my local neuro on Thursday, and I'm hoping he will let me jump ahead and at least discuss what drug he will put me on, assuming the diagnosis becomes official, and I can't imagine that it won't. I know I don't sound very cheerful, but I am actually doing pretty well, working at being mindful. My mom is here visiting, which has been nice.

xoxox
MM
Feel free to write downer posts if you feel like it. I know what you mean about researching things on the internetit seems that there is alot of misinformation and horror stories about all sorts of topics! Your friend is very wise, and so are you, trying to stay mindful and present and trusting your doctors. Not easy to do, but very wise to try.

Im glad your mom is in for a visit. Will she go with you to your neuro visit on Thursday?

Big hugs coming your way. Ill be watching for your updates MM.

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