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.
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.
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.
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)
Dd: Conceived when I was 42 after 2 years ttc. Conceived on 6th IVF cycle after 2 bfn's and 3 m/cs.
...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.
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.
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.
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
Konni, if you ever want to talk about your sister, I for one would be interested in how you're handling that. I have an older adult sister with developmental disabilities. Having a sibling--an adult sibling especially-- is a whole different thing from having a child with those issues. So it's not really a topic for this board. But if you want to talk, you can feel free to email me. Maybe we can share both feelings and information.
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)
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!
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.
My husband's cousin and my best friend boyfriend both have MS and received diagnoses a long time ago (maybe 15-20 years). Both are doing very well. I had a client years ago who was in her 60's and she would get a flare up once a year and the disease hadn't progressed in decades. If you want to e-mail the cousin or friend, please let me know. It's a strange disease in that it presents very differently in different people. Hang in there and stay strong. We're here for you.
and she functions really well. She's probably 60 or so, and the most annoying symptom she has is that her thumb will go numb (which makes it hard to write). I know MS is very scary (my DH may have it, but not diagnosed yet) and that nothing but NOT having it will make you feel better. But know that there are people who have it who manage to live their lives DESPITE it. Hang in there, and I'm so sorry you're having to deal with this. And NEVER apologize for your down moments - it is to be expected, and part of the acceptance process, to be a bitter betty once in a while. I would be a LOT! xoxoxo
I was so saddened to hear of the MS diagnosis (or the probability of this) I cannot imagine how scary and overwhelming it must be.
I did want to tell you that I volunteer at a hospital which is known for their MS research (also for treatment of TBI and spinal cord injuries) I know John's Hopkins is an amazing place but this may be worth checking out as well.
I would be happy to help you in any way possible...just post and we can figure out a way to talk.
if anyone here only had positive things to say I wouldn't think they were very honest...... or interesting for that matter LOL!
Allow yourself to feel bad when you feel bad so you get rid of the negative energy. If you stuff it down or deny it you will make things worse.... and feel stress which is bad for the immune system. Let it out and you will feel better--- trust me, I learned the hard way.
Just want to give you big fat hugs and tell you to lean on us. This sucks for you, but more, this is going to be OK!!!!! You will learn and experience and grow.... yeah, I know IF gave you plenty of inner growth, but we don't get to choose these things.
I admire your attitude and your ability to communicate (m)
January 19 2012, 6:28 AM
such difficult issues and emotional items to process. Sending you warm hugs and hopes that this year improves as time goes on. Please keep us posted as you feel appropriate. You've always been such a positive source of energy for the group. Many of us are gratified to be part of your support group.
Honestly Michelle, I can only think of upbeat words to describe the attitude which you share here - both as a poster/supporter and also in regards to this health situation. The unknown, especially in situations such as this where you mind could go wild, is ofen frightening and it NATURAL to be concerned and yes, scared.
As others wrote, I hope you do allow the board to support you. We are a group from all over the world, with all sorts of different life experiences, with good ideas and connections and you just never know the result if you reach out.
I hate that you are facing this health concern but you will be OK and thrive, no matter what the outcome.
I'm not wagging my finger at you, I'm trying to be strong and firm and assuring!