Diagnosis is Not all of Who You Are

IMG_1360You 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…

Seeds Sprouting

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?

Sometimes I Feel Like a “Normal” Mom (Impostor Syndrome?)

What is normal?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.

MRI from November 2014

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!

 

Knowing our limitations

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Once we learn to deal with what our new “normal” is and we have grieved for our old self this can be such an important tool we use daily in managing our MS.  I think it’s important for us to grieve the person we used to be because lets face it no matter if we have changed physically (inside or outside) we aren’t the same anymore.  How could I go from enjoying running one week and then to the next where my fatigue was so bad it took every once of my being to get out of bed? We learn to adapt and over come and get used to the “new normal” for us no matter what that may be now.

I think one of the hardest things about dealing with this MonSter is to know your limitations.  When I was first diagnosed as a young adult I pushed my limitations to the maximum all the time.  This was probably because I was still in denial about even having multiple sclerosis. I would go out with friends my age to do what young college kids do in enjoy the nightlife and then pay for it ten fold for days after because my body couldn’t bounce back the same as everybody else’s.  It took me many years of what you call “pushing the envelope” before I truly realized that I needed to know what my limitations were so I could manage my MS better.

This became a very apparent life skill after I became a mother for the first time.  I like to think of my energy levels as a battery.  Some days I wake up with a full powered battery of energy and feel ok.  But then I have to remember every thing I have to do in this day will take away from my battery charge.  When I wake up some mornings and I already feel like I am only dealing with half a battery of energy then I prioritize what I really need to do this day and what can wait for another day.  Being a type A personality was a challenge with this as this was a tough one for me at first because I wanted to get it all done.  I felt guilty if I couldn’t keep up to what other mom’s do but then I learnt that I needed to stop trying to compare myself to others and the world wouldn’t end if my laundry waited another day.

Learning to say the word “no” is also very empowering and liberating when you need to say it.  You know what I mean when there are other moms who ask you to help with some school function in the evening that your children attend and you know darn well that it’s too much for you to handle a task like that.  Part of you really wants to help because you feel as a school mom it’s your token “duty” to help out as much as you can but the other side of you knows darn well the physical part of handling this task and especially in the evening will wipe you out for days. I have learned how to say no to tasks that I know are too much for me to handle now and not feel guilty after.

A smart person once told me this quote a long time ago that I want to share with my fellow MS Moms.

Be yourself, everyone else is already taken ~ Oscar Wilde

So be kind to yourselves and remember we all go through similar experiences so talking to other moms with MS can really help you feel like you are not alone. If you are on Facebook come join us https://www.facebook.com/groups/momswithms/

Until next month take care of yourselves,

Michelle

Happy New Year to my fellow MS Moms

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The New Year gives us a chance to reflect on the past year and be thankful for what we do have in my lives.  When you have a chronic illness like we do everyday we wake up and feel well enough to get through the day is a blessing isn’t it? We often might find ourselves making goals for the new year that are unattainable thus disappointing ourselves if they don’t turn out. I like to be realistic and set one goal because I found this is more doable. This year I am sticking to my goal of being more active as I can (or that my MS will let me of course) but I am a big believer that “if you don’t use it you will loose it”. So for one with mobility issues such as myself this means I am walking with my aids as much as I can to keep my legs moving. Others might only have the option of using their arms more now and that’s ok as long as you do something right? One of my  Dr’s who is practiced in Functional Medicine once told me avoid being sedentary. You could grab a water bottle and do some curls for about a minute every hour.  Some other activities may include walking, stretching, or trying a mindful workout. This means 10 minutes of quiet time to your self without distractions. I know this is a challenge in my house because with young children when do we actually get quiet time?  But really trying to make quiet time for even for 10-15 minutes a day for you can do wonders.

No matter what stage of illness we are in, whether we’ve just been diagnosed or we have lived with Monster for decades, there are adjustments we can make to increase the joy in our lives and to live more fully:)

 

Until next month take care of yourselves,

Michelle

Helpful Tips for MS and Cold Weather (Cold Sensitivity!)

We get a lot of information about how many of us that are diagnosed with MS have heat sensitivity issues. During the summer especially we hear about where to get cooling vests and what different methods those of us who do experience heat sensitivity use to cool off. Less attention is paid to the other end of the spectrum…which is the sensitivity to COLD. Personally I am a lot more comfortable in warm climates than cold. I often have very cold hands and feet and feel like I really tense up all over when the weather gets colder. Here are some of the things I do to try and keep warm this time of year, no guarantees or anything but these things help me!:

Layers:
Mom was right! Layers absolutely help. Recently I’ve been making sure I have a pair of long underwear or leggings on under my pants, just about always. To make sure they don’t get awkwardly pulled up when putting on my jeans or boots I pull my socks over the leggings too.

Drink Hot Stuff!:
I love my coffee in the morning, personally though I try and stop drinking caffeine by noon. I switch my drink of choice to tea or what I call my “ginger water” which is just a few slices of ginger either put into my teapot with hot water or boiling the water on the stove with some ginger in it. Sometimes I add a little bit of turmeric as well but that is to help with inflammation more than temperature.

Heating Pads:
I absolutely love heating pads…I don’t currently have one but in the past I have used an actual electric blanket at times and at other times a heating pad. They help a ton for me when I’m really cold, especially when I am trying to go to sleep and the coldness is keeping me from relaxing. I’m also a fan of the hand warmers that are little packets of warmth that can be used on occasion.

My Family:
As a mother of three that participates in our version of “Attachment Parenting” I very much appreciate the little warm bodies that tend to surround me. I co-sleep with my kids and most nights have anywhere from 1-3 little people surrounding me. It definitely affects the quality of sleep (they seem to have a hard time holding still!) but they also improve it since they are like little furnaces temperature-wise. My husband of course is also wonderful when it comes to warming me up but at night the kids are usually occupying the both of us.

Hot Shower/Bath:
Might be obvious but sometimes I am very happy to remember that we do have hot water in the house. If I take a warm enough shower I definitely feel warm to the core and if I can dry my self fast enough and put some lotion on (I use coconut oil) I am super warm. It helps if I start the shower warm and slowly ease the temperature higher since with my cold feet the warm water can feel almost scalding!

What do you do? I’m always looking for more tips to add to my toolbox…I’d consider adding a treadmill to this list but since I have to go to a gym to do that it is less than convenient…anything you recommend?

My adapted version of “SuperMom”

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Have you heard the saying it takes a village to raise a child.  This is so true and if you have a chronic illness then this manifests that concept tenfold I think.  It’s frustrating at times when we aren’t sure how we are going to feel from day to day so sometimes we might be a bit reluctant to make plans too far in advance.  I find this a challenge when it comes to my children’s fieldtrips at school.  When they are all day field trips I do not volunteer for them as they can physically be too much for me. I try to help with any that are shorter or closer to home because my children really want their mom at their field trips sometimes and I don’t want to disappoint them.  So in preparation for these days I have to really manage my energy days before in advance to ensure I am not doing too much physically.  I kind of think of my energy as a gas tank. Some days you wake up and you only have “half a tank” of energy so you have to prioritize what really needs to be done that day and choose what can wait for another day. I found using this terminology with my kids now helps them to understand better how I am feeling.

When hockey season rolls around like it will be soon I get pretty anxious as it takes a lot out of me to take my son to his practices and games etc.  Not to mention a lot of the arenas around here were built many years ago and are not accessible if you have mobility issues.  I am so fortunate to have an amazing friend who has a child on the same team and a lot of times last year my son caught rides with them that were away games because the driving just plain wears me out. I truly appreciate her kindness for helping me. Its friends like this I treasure in my heart because they really care and want to help.

I think this is where I carry some guilt when it comes to not being able to do more when it comes to my children’s activities.  I try to remind myself that I do what I can when my body allows me to and I need to let that guilt go for the times that I can’t help. I used to take it to heart what others thought or judged me for but not anymore because I truly feel worrying about such non sense is a wasted emotion.  I think we can be so hard on ourselves when we are a Mom with MS aren’t we?  It’s only human that we want to do more for our children but knowing that we just can’t keep up like some other supermom’s out there and that’s ok.  It does not make us any less of a mom.                      

Be Kind to Yourself

There will always be times when it’s hard to remember your strengths.

These are the times when you need to give yourself special attention.

Be kind to yourself… Kindness nurtures and gives hope to growing dreams.

Respect yourself… Listen to your needs, and treat yourself as you would to a friend.

Encourage yourself… Remember what you truly want, and fight for it as you would for your life.

Appreciate yourself… Don’t take for granted the qualities that make you unique.

Focus yourself… It is with discipline and motivation that you will move towards your goals.

Be giving towards yourself… In that way, your strength will thrive, and you’ll be realizing your goals a day at a time

                                               ~ Angelfire

Kind regards,

Michelle