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How do you feel MS has affected your parenting?

Join this important online conversation in our free webinar, hosted by Michelle Walsh, blogger at “Moms with MS”, on issues facing parents with Multiple Sclerosis and learning creative ways to work around your symptoms! Register today at www.genefo.com/webinarms
MS Parenting Secrets
* If you can’t make the session, you are welcome to register and receive the recording!

 

Quality Over Quantity

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When you are diagnosed with a chronic illness like MS, a lot of things change after. If you think your life won’t change you are in denial because it does at some point.  Some friends you tell about your diagnosis are there for you no matter what and provide you unconditional support.  You know the kind of friend where it doesn’t matter how much time has gone by when you talk or get together it feels like you never were apart when you see each other again. Others unfortunately avoid you after you are diagnosed like the plaque or they slowly treat you different over time. Even people who were friends for awhile before you got diagnosed disappear or don’t want to keep in touch or return your phone calls anymore. At first I used to wonder why they would do this to me or beat myself up worrying if I did something wrong.  This has happened to me as I’m sure it has to many of my fellow MSkuteers but this has shown me that its more about the quality of my friends for me now than it is about the quantity.  I was once told you can always count your true friends on one hand. This is still true for me today. I have had friends come and go in my life but the closest ones to me in my life I can always count on.  I know these chosen few I can count on my one hand who are always there if I need to pick the phone up to talk. I have always taken it personally at first when a friend decides not to be a friend anymore.  Why do some friends leave us? It’s not like they can catch MS from us. Do they think for a second that we wanted to get diagnosed with such a nasty MonSter?  I might be physically different than I was before but I am still the same person inside. When this happens we wonder why we said anything at all to them about our MS.  If they knew us well enough and tried to understand our chronic illness they would know we have good days and bad days like anyone else. It is awful if I have made plans and I end up not well that day so then have to cancel but its not like I wanted to cancel its just that I knew my body wasn’t up to going out.  If I know I have something I am going out to coming up I have to prepare and get my rest many days in advance. I know the average person might not have to do this but we with this MonSter do.  I mean the energy it takes to get ready from having a warm shower, to doing your hair & make-up to getting dressed takes a lot out of us in terms of physical exertion. It’s like I am all dolled up ready to go out and I have no more energy left to actually go out sometimes.  My close friends that know me well know this and don’t even second guess if I can’t go or can’t stay out too long.

Going through some good times and hard times with many friends (even some friends who also have MS) has also taught me the ones worth having around don’t make things hard on you. They just love you for being you and you don’t ever need to worry about their caring or loyalty because they are always there if you need them.  These are the true friends you focus your time and energy on because lets face it life is too short and none of us know how long we have on this earth. Some friends may come in your life for a season and then go after awhile and that’s okay too. They came into our lives for a reason in the first place and were not meant to stick around for the long haul.  So take the time when you can to show these close friends in your life how much they mean to you. These are the friends I truly cherish.

“A true friend reaches for your hand and touches your heart. ~ Author Unknown”

Until next month,

Michelle

Colorado Moms!!

welcome_colorado_sign1Our next featured local group is for Colorado Moms!!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet! So if you are a mom with MS in Colorado we hope that you will join!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions! If we don’t have a site for your locality yet then you can either make or ask Kristin to do it.

Massachusetts Moms!!

MassachusettsDid you know that we have a lot of local groups on the site for different states and countries? We added another one! This one is for Massachusetts Moms with MS, I can only imagine with all the excitement going on in Boston it might be nice to be able to connect online!

So if you are a Mom with MS in Massachusetts the group is now here!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions!

Texas Moms!!

Did you know that we have a lot of local groups on the site for different states and countries? We added another one, for Texas Moms with MS yesterday and we’re aiming to promote one group a week or so, for the groups that already exist and also as we create the ones that are needed!

So if you are a Mom with MS in Texas the group is now here!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions!

Pregnancy and MS

Very Pregnant KristinMultiple 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.

Resources:
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