Category: Health

Mentally Disabled?

It was at an informational luncheon for MS that I met the first person to tell me she didn’t work anymore because of the reduced mental capacity she had due to the disease. This was in the beginning of my MS Journey; before I had many symptoms. I remember being in wonder at how someone…

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Chapters

I have always felt that my life has happened in distinct chapters.  From gutting fish in Alaska, to backpacking through Europe – these chapters have molded me and made me who I am. Some are longer than others, and I certainly enjoy some a lot more than others, but all have imprinted on me. The…

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First World Problems

A while ago, my husband used the phrase, “first world problems.” I think it is related to a phrase often used by our neighbors, “problems of the rich.” They both mean the same thing. How can we feel bad that we don’t have enough money for the perfect (insert your want here), when we have…

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Was it Worth it?

A question that many people ask me after I’ve had the HSCT is ‘was it worth it?’ I always tell them that I cannot decide that for them. It depends on your personal situation, and when I did it I had no other choice. I was feeling like I was not living anyway, so if…

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Feeling Good

I am feeling good.  I have gone out to exercise three days in a row now. I am going to keep it up. I do not get so tired that I feel like I’m going to die afterward, but I get tired in the evening, and that is OK. I do not feel guilty. I…

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Balance

Balance is an important term for people with MS for many reasons. There is the physical balance that you lose which makes is hard to run, walk, and do yoga. For instance, I stopped running outside a while ago, when it got to the point that I fell every time. But luckily, because of the…

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Recovery Continues

I have been very unhappy with how my body performs lately. A lot of it is the recovery from the HSCT, and also the toll MS has taken on my body. But it is also that I have been having a hard time figuring out how to exercise in a way that works for me…

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Decision Revision

So maybe it’s time to make a new decision. Yesterday felt good for the first two hours of the day, and then I had to take a three-hour nap before I picked up my daughter from preschool. I then went to my son’s end of year party, my daughter’s pre-school graduation, and my three kids…

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Almost There

I am sick again, but it’s different this time. I am not knocked out of all my energy and it’s just a cold. This is really good news for me. I was really sad when I realized I had it, the snot, the sneezing, all the normal stuff. However after being awake for a couple…

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Is Recovery Taking Every Piece of Energy I Have?

It is a mixed question, or rather a mixed answer, about how much energy it really takes to recover from myeloablative HSTC. Sometimes the answer is no. Like today luckily. I’m picking up my parents to come visit the kids and me for four days and we are super excited. I was able to get…

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Recovery

I am very aware that I have not posted in a long time, and I apologize for that! This recovery from the HSCT is harder than it was initially. I am gettting knocked down by colds all the time, fatigue had moved in for good, and I even spent a full week in bed when…

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The Questions Don’t Stop

I am watching this show, Six Feet Under, which has an amazing story line and character development. One of the brothers has found out he has something wrong with his brain that can cause an embolism or stroke at any time and he doesn’t know what to do. I can so intimately relate to this…

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Everything Will Work Out and I Cannot Stress Out

This is a very busy time in my life. No matter how much I try to simplify things, they always get out of control. Recovering from a Stem Cell Transplant is apparently not enough for me! My body is not back to normal. I’m still on steroids, and will continue to be for some time….

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Accepting My Current State of Existance

Something I am getting better at, which is necessary for life in general and not just recovery, is accepting whatever my current state of existence is. Whether I feel like I’m in shape, excessively tired, or productive or not, I need to be able to accept where I am in life. Not just where I…

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Remembering to Appreciate the Little Things

Today I am happy. I was feeling really unhealthy, like my body couldn’t move easily. It is hard to explain, but after not doing any real workouts for a week, I felt like I was sick again, and I couldn’t handle it. I was happy to have my husband back, which is helpful for my…

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Recovery – Day # 97

I am very aware that I tend to sugar coat things and make it seem like everything is fine and I’m always doing great, so today I am going to talk about the other side of it. Then with that all out of the way, I’m going to relax and enjoy the gift of being…

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Unwanted Guests

With MS, it is not just how you feel day to day that is questionable, but it’s hour to hour that really gets me.  I can go from 1 to 10, in terms of pain, in less than an hour.  And Pain’s BFF, Fatigue, is never left behind.  As I can no longer predict my…

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4:00 AM and Spinning

I have always had a bit of insomnia.  I recall times in high school where I would stay up all night watching TV because I couldn’t sleep, then sneak back into my bedroom before my Dad got up so he wouldn’t make me stay home.  I hated missing school.  If I missed a class, I…

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Six Weeks Away, and Falling Apart

I am now just a six short weeks from leaving for Italy.  Up until now, I have been very brave about the whole treatment.  I know it’s going to be hard and I will go through a lot of pain and discomfort, but I know I have to do it.  I have to do it…

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Back with a plan. . .

I have been not posting for a few months now, per my lawyers advice, while we were waiting for a final rejection from the insurance company.   Well, we were trying to wait for them to cover it, but we ended up getting a final rejection.  Now that that’s over, I can freely write about whatever…

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The Gifts We Take for Granted

I’ve had this blog in my head for over a week now, and I’ve been putting it off because I’ve been doing exactly what I’m blogging about right now, enjoying the gift of time. I have quit the waiting game.  This is not to say I know when or where I’ll be treated, yet.  I’m…

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Hurry Up and Wait

With the help of my family, I have decided to get an HSCT, or stem cell transplant.  This is a process that has been practiced for many years for blood related cancers and for MS, but the FDA only approves it for the treatment of cancer.  What this means for MS patients is that insurance…

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The Beginning of the Next Chapter?

Something big is about to happen and I can feel it running through my body like a surge.  It is scary, exciting, exhilarating, and impossible to think about all at once.  I am driving home for the weekend after my first round of testing, and will be back on Monday for more.   And once it…

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Hybrid

I am learning that there are multiple levels of disability for those of us with relapsing remitting MS (RRMS.)  The first level is called ‘Think’; this level comes right after the diagnosis before you really have any disability.  You think about what might happen, what the future might or might not look like, and you…

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Follow Up

OK, I cannot go to bed knowing I just put a depressing blog out there.  The point is, I am in limbo right now.  I’m between a possible cure and giving in to disability.  But the truth is, I can’t think of a single time I’ve ever given up.  I am not going to start…

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The Waiting Game

When I first got diagnosed with MS 13 years ago, I remember meeting a woman who was in an electric wheelchair.  She told me something that was very hard for me to comprehend.   She said she did not need the wheelchair, but she used it because it allowed her to save some energy to do…

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Perspective is Everything

Last night, my mother told me she was proud of me.  She said she knows how hard it was for me to make the decisions I have in order to conserve some of my energy each day.  I have made the choice, and I emphasize the word, choice, to start using a handicapped sticker on…

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A Cure for MS?

I have not blogged about it yet because I am not exactly sure what is going to happen, but I  have made the decision, with my families help, to get a Stem Cell transplant.  I believe it to be a cure, and I’m not quite sure why it is not being reported about anywhere yet,…

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Don’t Over-Think it!

Something that has been keeping me very busy is that I have been asked by the National MS Society to give a speech on emotional wellness.  I am putting a lot of thought into how to say everything I want to while still keeping in mind that I want it to impact others so that…

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Stay Strong Until there is a Cure

I have been so busy lately I’ve had a really not been making time to blog.  The irony of this is that blogging has become one of the things that helps to ground me and keep me happy in the mist of all the uncontrollable chaos around me; so I decided to write a blog…

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Adaptability

Adaptability ~ the ability to change and adapt to new circumstances. This is a trait that I find very unnatural as a human, yet very important as someone living with MS.  I find that in order to keep moving forward and staying positive, two very important factors to staying happy, I need to adapt as…

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A New Way to Choose

I have been feeling sorry for myself the last two or three days because I am experiencing something my doctor thinks is a Pseudo relapse brought on by stress.  This means that my body is presenting all of past symptoms: pain, lack of coordination, my fingers not doing what I’m telling them to, and many…

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On the Other Side. . .

All too often, we have a tendency to fall into the trap of thinking that the grass is greener on the other side.  We tend to think that if we could just be like so-and-so life would be so much easier.  If we just had money, or fame or were healthier, life would be better….

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The Power of a Positive Attitude

My Dad asked me if I could send him a couple of my blogs that I think show how I keep my spirit up.  His friend had asked him how I could stay so positive all the time, so he wanted to send him some of my blogs that outline how I keep my thoughts positive.   I asked how…

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“My Awesomeness”

I think it is all too often that we forget to marvel in our own awesomeness.  As members of society, we are taught to have humility and not boast about our own strengths.  This does make you appear to be a more likeable and humble person to others if you do not act in a…

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Twirling in the Wind

Here’s my shout-out to you, Jackie, I know you’re reading this! I often try to figure out how to be the best me I can be.  Over analyzing myself can lead to negative thoughts where as noticing the traits in others I admire help me find out what I want to be better at. This…

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Because I Can

I have always been into running, but I have not always been able to do it.   As someone with relapsing remitting MS, it is not always possible to work out.  I go through periods of weeks or even months where I can hardly get across a room, much less get to the gym.  This last…

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The Benefit of an Off Day. . .

With my latest goal of being “good enough,” I have found the freedom to pursue my goals without the pressure.  Without having timelines or defined obligations to meet, I find that I still try to get everything done; I just don’t feel as stressed out about it. Perfect example: yesterday at the gym, I had…

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Good Enough

I am a type A person that also suffers from OCD, depression, anxiety, and a weird need (as if it’s possible) to be perfect.  Some of this is genetics, and a lot of it is just symptomatic of having MS. I feel that having these traits helped me a lot in my 20’s, because I…

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Name it. . .

Depression.  This is by far the scariest and most immobilizing symptom of MS I have had to deal with.  It is usually under my control, via by sheer will, tricks and tips I have learned, or medication.  But these things do not always work how they are supposed to.  And once you spiral all the…

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Balls in the Air

Some days just feel out of control.  I feel as if so many things in life are unsettled, unplanned and unknown.  The combination of chaos + the unknown + the unplanned make me feel helpless and depressed.  I don’t know what to do when I don’t have the answers for everything going on in life…

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The Power of Choice

People say all the time how you can choose to be happy.  There are even books written about this, with that very title.  It’s a choice; you choose your mood.  The problem with this is that it is not as simple as that.  Moods happen and things happen to make you feel bad. I propose…

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Forward Movement

Newton’s law of inertia states that a body will keep its velocity and direction as long as no force in its direction acts upon it. One of the main factors in living a happy life is forward movement.  People have an innate need to feel that they are going somewhere, achieving something, making a difference. …

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The Best Me

It’s a new year, and I am making the same resolution I make to myself every day.  I just want to be the best possible Me I can be.  I want to live more in line with my values, and worry less about what others think.  This means trying to always remember and believe that…

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