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.
I was diagnosed with Multiple Sclerosis almost 15 years ago. I don’t usually show any symptoms, very rarely any that someone would notice. Usually they are subtle and/or invisible enough that there isn’t attention drawn to them. I also don’t often talk about it. I bring up my diagnosis if there is someone who I am hoping to help with information I learned because of my relationship with MS, or if someone asks what I’ve been working on. This site when I mention it often leads the person I’m talking to, to ask if I have MS, and when I’m asked directly I don’t lie about it. I’ve even wondered myself if I “really” have MS, but I have not been able to get a doctor to consider this possibility because of those dang spots on my brain.
Many times when the “truth” does come out, a flurry of “Oh I’m so sorry!” and “How are you feeling?” type comments come spewing out of their mouth, I then calmly smile and let them know that I’m lucky, I haven’t personally been experiencing symptoms as of late, and also I often mention that I have my “toolbox” of ways to deal with symptoms when they do come up and they seem to be working for me. I sometimes feel almost guilty (and always grateful) that I feel so normal.
Here are some answers to questions I’ve seen/heard asked many times over the years:
How do you treat your MS?:
Mostly I take supplements (as recommended by my naturopath based on blood tests) and am careful about eating as much organic vegetables and fruit as possible along with smaller portions of meat and organic rice. I focus on keeping out the chemicals used in conventional farming and food processing. I avoid things like fast food, boxed food, and milk.
What have you tried that didn’t work and why?:
When I was first diagnosed in 2001 I was put on Avonex right away. This only lasted for about six months because it made such a horrible impact on life. I was a Junior in college and feeling like I had the flu once a week along with a super busy schedule did not work for me. After this I was switched to Copaxone for a few years, I eventually stopped when I was pregnant the second time. I hadn’t been good about taking it regularly anyway and the doctors I had at the time didn’t want me using it while pregnant. I haven’t felt tempted to go back.
What advice do you have for a mom recently diagnosed re choosing a treatment?:
I would recommend doing research and asking lots of questions. There are so many ways that people are treating their MS that is or isn’t well known at this point. This is a big part of why MomsWithMS.org exists is to give moms access to each other quickly so that you can meet women utilizing anything from the big ABC’s (Avonex, Betaseron, Copaxone) to things like CCSVI (Chronic CerebroSpinal Venous Insufficiency), MMJ (Medical Marijuana), HSCT (Hematopoietic Stem Cell Transplantation), LDN (Low-Dose Naltrexone), IVIG (Intravenous Immunoglobulin), Naturopathy, a variety of dietary methods and more for example, most of which recommend avoiding dairy for reasons discussed by Naturopath Fiona in videos on her page. Sometimes doctors don’t stay up to date on the current trends/treatments/nutrition and what is working for people in other parts of the world and so it is important that we advocate for ourselves. This advice is near opposite of what I was told in 2001 which was to not look online, but things are changing so fast I feel it is very important.
UPDATE: I just ate my lunch after publishing this post and realized I left something out. We are normal. We are all human beings and something I’ve realized in the last 15 years is that just about everyone thinks there is “something” wrong with them. 1 in 5 people have an autoimmune diagnosis of some kind and more are being diagnosed each day. Let’s all make the best of what we DO have and focus on that, in my experience it helps a lot to improve what works and sometimes forget about what doesn’t, because it just might start working again. Just being a mom will expose you to TONS of other moms and what I’ve noticed is that we’re all trying to do better…we really aren’t that different. In many ways we have a special perspective about things that might be more worrisome to someone else, because having experienced something as serious as MS and what we go through to get diagnosed gives us a kind of strength. I hope you all find the beauty and strength within yourself because you are normal in the most awesome way, we are alive. We have created little humans and we are raising them each day. Go MOMS!!
Please contact us with any questions by commenting on any post or through our contact page, we look forward to hearing from you!
Recovery after HSCT is a rocky road but well worth it. It is very scary to feel old symptoms when an infection or illness presents. It is a vivid reminder of what life could have been like. It is close to heart breaking to think that every MS patient isn’t given this as an option to consider.
It would be easier to list what has changed then type out a long paragraph for you all to read.
What still remains:
Hip flexor weakness in right leg
Hamstring weakness in right leg
Quad weakness in right leg
Trouble with a walking pattern
Trouble with balance (Low fall risk now)
Weakness in right hand grip
What has disappeared:
Numbness in right hand
Numbness in left hand
Numbness in face
Numbness in chest
Eye lid twitches
Hand eye coordination disturbance
Bladder retention and incontinence
In a nut shell almost all of my cognitive and sensory issues have completely gone away. My motor function issues still remain but gradually improve day by day (except my foot drop, that is about 95% improved). Dr Burt says two years is the magic number for a baseline of recovery. I am anxious to hit that milestone.
Recovery is not easy. It is a lot of ups and downs emotionally and physically. It seems like as symptoms start to improve they actually worsen first. Two steps back three steps forward. Sometimes to the point that the pain or loss of function is so much worse then before HSCT. This lasts about 2-4 weeks and then the symptoms starts to fade very quickly (within a week or two). The most painful reversal of symptoms so far has been the muscles controlling my foot that I no longer have foot drop in and my right hand which had motor and sensory symptoms. At times the pain seemed unbearable… But it was worth it.
I can now take my children to school, watch them play at the park, I can stand long enough to wash my own dishes and do my homes laundry. I can go to school events for my children, I can go grocery shopping. I can do things by myself! I no longer need someone with me 24-7. I am able to be a mom again… I can not run around or walk like an average person but I can do it in my own way.
Emotionally it is so hard for me to accept why didn’t any one tell me about this sooner? How could anyone of the many doctors I flew all over the states to be seen by not mention this? If I just would have had HSCT a few months sooner I would be an average regular person right now free of all of my past symptoms… That last flare left me with this severe damage that effects my leg. It’s hard to accept… However seeing the number of people that have found HSCT since I started sharing my story last year has helped make my recovery much easier. Knowing I have helped someone else rid their life of this horrible disease feels pretty awesome.
If I had to do it all over I would have had HSCT done after I failed rebif and after failing Copaxone. When it became more difficult to “fake” being normal.
I hope that message reaches at least one more person and saved their future also….
Don’t wait until it’s too late…
Until next time! Xoxox
This post originally appeared on Heathers HSCT Journey. We are sharing it here with Heather’s permission. Please take the time to visit and follow her page if you are interested in learning more about her experience of HSCT.
I spent some time on Twitter the other day and stumbled across this find, Rebecca Clary was inspired to write this book and to create a website to support Parents with MS because (as we know!!) there doesn’t seem to be enough of that.
It is exciting to see her books (there are four now I believe?) and I bet there is more to come! You can see her site at MyMommyHasMS.com as well as follow her on Twitter @MyMommyHasMS and /or Facebook and support her efforts to inform the kids in a way that they can understand that isn’t scary. I think the more we do things like this and talk about our experience the less scary it will be for all of us. You are an inspiration Rebecca!! We’ve been trying to find was to talk to the kids about MS and can absolutely see you are filling a need. Thank you!!
Multiple Sclerosis is an auto-immune disorder that is typically diagnosed between the ages of 20-40 and affects women much more often than it does men (ratios I found vary from a 2-3:1). Being the age that they are when diagnosed is during the fertile years of a woman’s life chances are that at least the heterosexual women are either having babies at the time, wanting to have babies or actively avoiding pregnancy. Despite the fact that these things are all happening at the same time it is amazing how difficult it is to find any sort of consistent recommendations when it comes to Multiple Sclerosis and in particular the treatment of it relating to both pregnancy and to breastfeeding.
Personally, I have two daughters, I was diagnosed well before even considering having children and am amazed to hear stories about what the moms I have met from all over the country are told when it comes to the ‘right’ thing to do for both themselves and their baby during this time. When I became pregnant it 2005, almost 4 years after being diagnosed, I was taking a drug called Copaxone which I had selected because the doctor who prescribed it told me that ‘if’ I got pregnant, basically it is the only drug not guaranteed to mess my baby up. This was a scary thing to hear and at this point I wonder how much stock he held in the company but needless to say I decided on this drug because I knew that if I did get pregnant I would want to keep it, and would prefer it not be medically damaged by my medicine (in regard to these drugs this is not current, it only represents what my doctors said to me many years ago).
Once I actually did become pregnant, I had a different neurologist who was clearly very nervous about me staying on any of the MS drugs, though my Obstetrician/Gynecologist told me that it was no big deal, that it was a “Class B” drug and that meant I had nothing to worry about. She also made a point to tell me that it was important to keep taking it so that I would stay strong and healthy to take care of the baby. Clearly this is when I began to see that I was getting a different story/opinion from just about every doctor that I spoke to. All of this was back in early 2005, and the one thing that they did agree on at this point in time was that the ‘other’ drugs were absolutely not safe, and that it was good I was not taking them.
I stayed on the medicine, and had a healthy pregnancy, delivery, and postpartum experience. I continued taking the medicine until my daughter was about 6 months old and other situations in life kept me from continuing.
I got back on the medication in 2007 after moving from New York to Seattle through the process of ‘rebuilding’ my medical team locally. I continued on the drug (same one as before) until I became pregnant in 2008 with my second baby. My reason for discontinuing the medicine was that my new neurologist didn’t see any reason to. I had been candid about my inability to take it on a very regular schedule and I appeared to be doing just fine plus MS usually goes into remission through pregnancy anyway, he told me that the risk of what could happen wasn’t worth it in his opinion.
Question his opinion I did, but though I knew my older daughter was turning out wonderfully I worried that there might be new research or some other variable that he wasn’t sharing. I stopped taking the medication at that time. My pregnancy was uneventful MS-wise and I was just fine until 2 months after having my second baby girl when I had the worst exacerbation to date in that it affected my mobility and use of one of my arms. I was prescribed steroids (IV) and the lack of clear information regarding the ‘safety’ of the steroids sent me on a frantic hunt to find other moms or other specialists who knew what they were talking about. My Neurologist had told me to talk to my Pediatrician, my Pediatrician said it was fine as long as it wasn’t long term, and the nurses administering kind of freaked out and recommended I ‘pump and dump’. It was very scary to be getting such varied information so soon after having a baby and while I was experiencing such awkward symptoms. I just wanted to get better and not hurt my baby and I did end up ‘trying’ to pump and dump but my daughter was exclusively breastfeeding and it was hard to keep her away long enough to get enough out. I could tell that it was still coming through because I could smell it and my daughter seemed to not like it as much but wanted it anyway.
It was at this point that I found some new doctors, a Naturopath as well as a Neurologist whose focus is MS. I learned about IVIG and started taking it because from the research about breastfeeding and the safety of IVIG I felt it made the most sense for me. Fortunately I recovered from this flare and at this point was motivated to look for other moms with MS. I created a community online and am constantly amazed by the variety of opinions being fed to us as a demographic.
Many moms are being told not to breastfeed, that it is more important to get back on their medications which aren’t safe for the babies.
To counter this, studies have come out as recently as last year that breastfeeding helps to protect a postpartem mom from exacerbation.
Many moms are being told that Interferons are safe, which completely contradicts what I was told in 2005.
Many moms are never even introduced to the idea of IVIG as a treatment option, surprising considering that I’ve been told that it is typically only covered by insurance when a woman with MS is pregnant.
Many moms are pressured to quit breastfeeding to avoid potential complications with medications.
Many moms are being told to just decide, without nearly as much information as you can see here in this article.
I ended up having another bad relapse (exacerbation) early this year and after much research and the fact that my munchkin is eating a lot more food than she is breastmilk these days I have decided to start taking medicine again. I don’t know if I will have another baby but surely the statistics will have changed by then and I will get to researching it much as possible, I have no idea what I will decide. I know many moms who have been either happy or unhappy with the pressures placed on them to make decisions they did or did not agree with, many successfully nursing with medication, taking no medication or weaning to take medication.
Following ones motherly instincts and doing what makes the most sense to any mom with MS seems to be the one thing most people can, pretty much, almost agree on.
1 – Who gets MS?: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/who-gets-ms/index.aspx
2 – Dr. Hale Breastfeeding + Medication Forums: http://www.breastfeedingonline.com/meds.shtml#sthash.zYQQEU1P.dpbs
3 – Pregnancy Links at and NMSS: http://www.nationalmssociety.org/Search?q=pregnancy&stype=0&chap=0
4 – IVIG: http://msj.sagepub.com/cgi/content/short/13/7/900
Article originally published by Kristin Bennett on Associated Content in 2010