This is a question that comes up a lot. It is also a question that many moms diagnosed with Multiple Sclerosis either have made or never had the opportunity to decide because diagnosis may have come after becoming a mother.
I think that we can all relate though, and have our own experiences to get any suggestions from. Advice sometimes that we get from doctors isn’t quite complete, which is why it makes sense for us, as women who have chosen motherhood, to help each other through these difficult decisions. We often have differing experiences and advice, so if you are making this decision be sure to make your decision for yourself and take any information you see as a suggestion, and do research with your medical team and support.
How did you decide? What would you have decided if you had the choice?
You can respond to this question in the comments. If you are a mom with ms and/or would prefer your name is not published, mention that and I will add your answer (without your name) onto this post. Please keep it friendly, this is a sensitive topic.
My hopes for this post, are that it can be found by women who are asking themselves these questions to help them through the process over the years. If you have a question that you would like to see asked in a post like this you can ask at Share Your Story.
I had an awkward experience this summer that felt like a good one to share. It’s isn’t really about the MS part of my life as a mom, (though my legs were partially numb!), but I think it is still relevant because sometimes we have a choice, if the situation/our bodies aren’t working/looking quite right, but good enough we can choose to just go for it, or sit out. Of course if we can’t we can’t, I’m not telling anyone to do what they can’t, but if we have a choice, go for it!!
“I was at a family camp, we go for a week every summer and my oldest daughter (on the right) absolutely LOVES to swim in the lagoon that they have there off of the sound. I knew this ahead of time and made a point to be sure to bring everyone’s swimming suit, including mine, particularly since I had recently…read more”
This post originally appeared on KristinBennett.com under “Just Do It!!” and both post and picture are shared/linked here with permission.
Thank you for sharing with us Lovey! You are making a difference in lots of lives and setting such a great example.
For any of you who don’t know, this is an MRI machine…it is basically a giant loud box that we slide into after we lay on that padded part and our head is gently (but firmly) clamped down so that we can’t move it. Sometimes we get an IV attached too for various reasons involving contrast and probably other reasons I don’t know off the top of my head. Once all that has happened, the whole part we are laying on slides into that hole, a kind of dark cave withing the machine, where we stay for as long as they require to get the images they need. We spend anywhere from about 20 minutes to more than an hour in there holding as still as we possibly can.
My kids, are finally at an age I have times that they are in school, and so I can schedule MRI’s to happen at those times. It was not always like that though, for example when I was a single mom and my daughter was a baby, I did not have time like that. Except for the times when I was working and she was in daycare, of course I couldn’t really go get an MRI then because I had to be at work!
I am curious to know what everyone else has figured out. For me, I mostly didn’t get MRI’s when I had young kids, sometimes I did but I recall it being pretty stressful to get someone to watch my little one(s) while I spent time in the tube. I am very fortunate to have supportive family via marriage, though I know that is never a guarantee.
Do you have family support? Daycare? Babysitters? Has it worked for you? Did you try to get help from any MS related organizations?
Thank you for taking the time to let me know!! You can also send me a message if you want to share privately, you can comment and ask that it not be published and I will reach out to you. If you are member on the private site you can also login and comment there if you prefer as well.
Lydia Emily, a mom with MS who has helped so many people with her artwork has a story that we all want to hear about. Fundraising for this project is going on now and has 21 days to go…they are just over 1/6 of the way to their funding goal and of course there are some awesome perks for this one as well:
Some of her artwork includes…
Lydia was diagnosed with primary-progressive MS three years ago, which means that her condition will only worsen. But this doesn’t dampen her rebellious spirit. Lydia rebels against the idea that because she’s been hit with hardship, she should give up.
You are much more that your Multiple Sclerosis diagnosis. I like to candidly say that MS is merely 2 letters that are in my medical record. Sometimes those two letters impact me directly, but sometimes it is something else. When I was newly diagnosed (dx 2001) it seemed like I had way more “symptoms” because it seemed that nearly anything under the sun qualified as an “MS” symptom. It took me a few years to realize that on top of having this diagnosis…I am still a human being.
That sounds wrong, I knew that I was a person of course, I still had my college classes, homework, jobs and more to keep me from focusing too much on the diagnosis. It wasn’t til later that I realized how easily I was impacted by things that seemingly have nothing to do with MS though. For example it was a HUGE aha to learn that one of the most MS-ish symptoms I’d had could also be caused by a deficiency in B12. The symptom I am speaking of is called L’Hermittes, it is a totally weird symptom to experience that I can only describe as feeling like my spine felt like it was transformed into a guitar string that was being plucked every time I looked down. I was kind of excited the next time I felt the symptom because I had a new tool, I didn’t just have to wait and hope that the symptom went away, I could just try taking a vitamin, and it might work! I have been luck to learn about lots of random tips and tricks like this and because I have lots of little things to try it keeps me from going to the doctor so much. I’ve read a few Tim Ferris books (like 4-hour workweek) and I use myself as my own test subject. I am not as good about keeping notes and reporting back on them but for the things that affect me I tend to remember, or at least find myself checking the same sources to find the same answer.
Being a Mom is of course a huge part of who I am. I am also a graduate of a prestigious design school where I managed to earn my Bachelors of Fine Arts. I moved a lot as a kid from Alaska and went to more than 10 schools though still graduated HS on time. All of this was unfortunately before Facebook and so I’m not connected to as many childhood friends as I would like to be. Some people don’t realize that I was a single mom, before I created the Moms with MS sites but well after being diagnosed and becoming a mom I successfully worked at a software company full time for a few years! It wasn’t until after I got married and during my second pregnancy (and recession) that I was laid off and created the online peer support communities with my nervous energy between looking for jobs and nursing my baby. I’ve considered a huge amount of other career paths ranging from “Art Therapy” to learning some code and more. I’m still exploring and still learning every day! I love gardening too and have the idea in the back of my head that I should perfect the home vegetable garden and help people get their own started! I just need to neaten up my process…
There is of course even more to me but I’m really interested in hearing about you, and who you are other than being an “MS Patient”. I bet we all have our own unique stories and a lot more to talk about than just that one diagnosis. It definitely helps to get that story told but there is always more. Do you agree with this?