Well that didn’t work

Well after the tough summer I’ve had with my symptoms from MS, my doctors in Connecticut and Boston want me to try a new form of treatment. I have been on Tecfidera, an oral medication for MS, for about 6-8 months and since my symptoms are getting worse, the doctors believe this isn’t the right medicine for me. That for some reason, it’s not working for me. So here we go again. I have been on so many different treatments during my fun filled span with MS, including injections from once a week to 3 times a week, to infusions and then the oral meds. I liked the oral meds the best because it was the least intrusive form of medication but The Gilenya I took had bad side effects with (my asthma was starting to be uncontrollable and my eyesight was changing too much) and now the Tecfidera doesn’t seem to be working.

So, here we go again. I knew when I went to see both of my MS doctors this summer that the discussion of chemotherapy would be brought up again. They have been talking about this option for a while now and I have always found a way to skirt around it but unfortunately not this time. My luck has run out.

I’m not going to sit here and tell you that I’m not scared to death, because I am. I’m not sure what’s scaring me the most. Is it the side effects or how sick I probably will get from this? Or is it that this may be my last option for treatment to slow down the progression of this disease? Probably all three but the last one seems to be the big one. I can handle a lot of things. My friends and family tell me all the time how strong I am and how well I deal with my MS but I don’t know. This may take me down. The thought of possibly losing my hair doesn’t bother me, by gosh, my hair is so thick, it might be a nice change! Getting sick after the treatment, yeah, not looking forward to that but I can handle it. It will be hard and I’m going to hate looking at my family’s faces as they see me getting sick but I know that will only be a temporary side effect. But the thought that this may be my last chance to slow this down, yeah, that scares me big time.

Now I know what you are thinking, the pharmaceutical companies are coming out with new drugs all the time and are constantly working towards a “cure” and you need to stay positive, Tabetha. I’m sorry but the pharmaceutical companies aren’t giving me a sense of reassurance, I am losing my faith in these companies, it’s a business and it’s all about the all mighty dollar. When I was diagnosed back in 1995, I was told “in 10 years, we will have a cure.” Well, it’s almost 20 years now, and um, hello, where is this cure? What I get instead from my doctors is, “what’s really a cure? If we can minimize the symptoms and slow the progression than that’s a cure, right?” Um. NO, that’s not a cure. A cure is when it all of it goes away, the symptoms, the damage it has caused, all of it. That’s a cure in my eyes. I guess we have different definitions of a cure. So, I guess, I don’t have a choice any more. My time has run out. I am starting this therapy this week and I hope I’m making the correct decision to go this route and unfortunately, I think this is the last route I have. God, I hope I’m making the right decision.

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Ice Bucket Challenge

I’m sure you have heard about the Ice bucket challenge by now. It’s an incredible way to get the word out about ALS, a degenerative autoimmune disease. My family, along with countless others, was effected by this disease so I have some understanding and frustration that there seems to be the same treatments as there was when my great aunt died of it back in the 90’s. I’m in awe that this challenge has taken on and spread so quickly through social media but does anyone understand where it all began? My husband was watching ESPN last weekend and saw a piece on Pete Frates, the man who started it all. It was so emotional and touching. It was a great piece on how ALS has overcome his body but how he insists on fighting. His wife is pregnant with their first child and the excitement he feels was so touching, even though he can’t say it or show it, you could feel it.

 

I was so inspired watching that piece until his wife talked about how hard it was to watch her husband struggle everyday with the disease. OMG, I thought. It hit me like a freight train. Sitting there watching my son and husband watch this with tears rolling down their cheeks. Is this how they feel with my MS, I never really thought about it that way before. I mean I worry all the time about how my MS impacts my family. I have felt bad in the past when I couldn’t volunteer to go on my children’s field trips because of my MS, I try so hard not to make my MS or my inability to be able to do things, like walk far distances, affect other people so I tend to shy away from those circumstances. Does it stink, yes, it sucks but I have to do what I have to do to live with this disease. I try so hard not to make my MS a burden on my family or friends that I tend to forget that it is still a burden on them.

 

When I heard her talking about how hard it is to sit there and watch her husband lose his battle with ALS and that there is nothing she can do about it, I was horrified. Watching my son and husband with tears rolling down their cheeks was so hard. I felt horrible. I don’t want them to feel this way. I have been living with all the pains and discomfort for so long and I try so hard to hide some of the new symptoms I experience or situations I encounter with this disease because I don’t want them to worry that I forget that even though I’m trying hard to hide all of this, that they worry anyway. I am getting ready to start a new treatment for my MS. It’s a chemotherapy treatment that I will be starting in the next few weeks. Am I scared, yes, horribly so but I have to keep reminding myself that I need to keep fighting, I need to do whatever it takes to keep fighting so that I don’t lose my battle with this lovely disease.

Starting all over again…

It’s been quite a while since I wrote my last blog. A lot of things have happened during that time, my MS has been rearing it’s ugly head. Back in November after my last blog, I was feeling fantastic. My workouts were even more intense than before, I felt great, I was eating healthy and my weight loss hit it’s peak of over 95 pounds! I was unstoppable, or atleast I thought. Then the holidays rolled around, still feeling good but with the holidays, come stress and as you know, stress isn’t good for anyone, esp a person with multiple sclerosis and on top of it I had some personal issues that not only added to my stress levels but also made me take a good look at myself. You know it’s interesting, when you start a weight loss/eating healthy journey, you hope to lose weight and feel better but what actually ends up happening is something you aren’t prepared for or expect.

95 pounds is a lot of weight to lose not only did I feel different physically, I felt different emotionally. I started to look at myself more, I liked how I looked in clothes, that has been a battle for years, but I also didn’t like the person I was. I found that I had lost myself to not only my weight but to my disease. I let my MS overwhelm me and take over all of my fears. Through therapy I discovered that since I couldn’t control the MS I I was controlling everything else around me, especially my relationships. I didn’t like the person who I had become before the weight loss. I was very controlling, didn’t realize it at the time but looking back, I now realize I owe some people an apology, and I have started this process. It’s such a rude awakening and humbling experience to look at your self through some one else’s eyes and that’s what therapy helped me do.

So here I am, after a tough summer of treatments for my MS and possibilities of starting new meds, I’m up 20 pounds and my energy levels have dropped so my workouts have not been great. I either haven’t gone to the Y or when I do go, it’s at a minimal. But you know what, I’m still trying. I’m not giving up. So I go and only do a few weights or just a little time on the elliptical, so what, I have to realize that I’m still going. I’m still fighting. I’m not giving up. I’m not happy about the weight gain, but I know a lot of it has to do with all the steroids I have been on, I get that, and as my husband said to me the other day, 20 pounds will be easier to lose than 95! Boy. Isn’t that the truth! So here I am, pretty much starting all over again with my journey, a journey that has taken a lot of turns, some good and some bad but none the less, I’m still trudging along!

Stuck in my routine

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I have been feeling stuck in my work out routine lately, actually, quite some time now.  I’ve been doing the same exercises now for probably a good 2 years.  It’s time to mix it up a bit.  I watch other people at the Y do their routines and some times I think there is no way I will be able to do that but the other morning, my husband helped prove me wrong.  I asked him to help me with my workout routine. This summer he reached another one of his goals by becoming a personal trainer so who better to help me than him.  I was excited and hesitant all in one.  I wasn’t sure what to expect but I knew I was in good hands.  Who else would know what I am capable of besides my partner.  He was funny the first time I asked him a few months ago, he wasn’t sure if I should be the first person he would work with because I am a person with “issues.”  I thought that was funny.  Issues.  Yeah, that’s a way to put it!  So we went to the Y early Saturday morning.  I was excited, looking forward to a change in my workout routine and looking forward to working out with him again.  That’s how we started this journey, together.  As he mentioned in his last blog, it is very helpful to start a new journey of eating and working out with a partner.  A partner who will help you through good times and bad, the times that you don’t think you can do it, they are there to help push you along.

He exposed me to new exercises that I couldn’t picture myself doing a few years ago, to  be honest, a few days ago.  I wanted to focus more on my hamstrings and boy did we do that!  A few years ago, after a workout like that, I wouldn’t be able to walk for days but this time I felt great!  Yes my legs were tired but a good tired.  They felt like they did when I was in high school playing sports. I haven’t felt that pulsing in my muscles from exercise in a long time.  It is such a good feeling.  It brings me back to before the MS, a time when I was very active.  I like that feeling and I want it to last.  It’s different than the tired feeling I get with my legs sometimes with the MS but that’s a good thing.  Before the MS reared it’s ugly head, I enjoyed playing sports.  I lettered in softball and volleyball in high school and also won the State Championship in golf in my freshmen year.  I miss the feeling you get after a good game or good round of golf.  The other day  helped me get a piece of that back. A piece I didn’t realize I was missing so much until I felt it and I have him to thank for it.  He was bossy but gentle.  He knew my limitations but didn’t let that stop me.  He would ask if I wanted to stop or take a break but I was enjoying it so much I didn’t want it to stop, the adrenaline I was feeling, I haven’t felt in a long time.

As I sit here typing all of this and spilling my guts, I’m pondering on how to keep that feeling going.  How do I sustain this great feeling?  The only way I can think of is to go back to the gym and do it again.  Am I nervous that the next time I go I won’t have him with me to make sure I am doing the exercises correct, yes.  Am I nervous that this maybe a one time feeling and I won’t feel it again, yes. I can’t let the thoughts of my MS stopping me get in the way.  That is such a hard thing to do when I’ve been doing it for so long.  I know I’ve said it before that you really can’t understand another person’s struggles until you walk in their shoes, well that’s really true.  I don’t know what it is like to have another disease, but that doesn’t matter.  I know what it is like to have MS and I have it.  I didn’t ask for it, I am just one of the lucky ones I guess.  It chose me so now how do I keep going with these great feelings that I am starting to experience again without letting the MS stop me?  The only answer I can come up with is keep plugging along.  Keep doing what I am doing.  Keep fighting even though I have days when I want to give up, but I can’t. I have a family.  I can’t give up on me because that is giving up on them and thats not fair to them.

Feeling lost

“Life has many different chapters for us. One bad chapter doesn’t mean it’s the end of the book.” author unknown

I’ve been feeling really lost lately. I feel great in terms of my MS and my weight but there is still something missing. I feel like I have lost myself. What does that mean? Well, I’ve been thinking a lot lately about that question, for months now to be honest. My husband has been encouraging me to look for a job for quite sometime now. I’m not going to lie, it’s both scary and exciting at the same time. I’m excited because I think it would help me get myself back to my “old” self before the diagnosis and all of what the MS has done to me emotionally but I’m scared because of the MS. I’m not really scared that I won’t be able to do anything that I think is a good fit for me but finding that fit is a challenge. I’ve been going back and forth lately on some different ideas in terms of work. I’m enjoying writing these blogs to not only help me, because it is very cathartic, but also I’m helping others. I have been lucky to receive some emails from people I know and some that I have never met, telling me how much my blogs are resonating with them. Total strangers are writing me telling me how I’m not alone in some of the feelings I have been expressing and that’s a great feeling. That I’m inspiring them by being so honest and the transformations that my husband and I have made in each other by losing over 230 lbs combined is inspiring.

I’ve been going through a tough time the past few days and I’ve been trying to reflect on my life and doing what I want to do. Not what other people think I should do, but what I want! Frankly, I don’t know. It’s like that old saying, “I don’t know what I want to do when I grow up” well that’s me lately. I don’t know. I was laying in bed the other morning thinking about stuff. It was cloudy out and unseasonably warm so I was trying to think of something to do with the kids or on my own. I was talking to a friend of mine and then it hit me, I’m going to go to Church. Now, I hate to bring up religion because it can be such a hot topic with people but that’s what I felt I needed to do. I felt like something was pulling me there. I got up, dressed and went off to church alone. I sat in a pew by myself, and as crazy as this sounds, tried to talk to God in my thoughts. I kept asking over and over again for guidance. Please help guide me to the place you want me to be. The place He knows where I need to be. I’m sure this sounds crazy to some people but I feel like when I get lost in life or get off “track” that going to church helps ground me. I know not everyone believes in this and that’s ok, I’m not asking you too, I’m just telling you how I feel and what I need to do.

After Mass ended, I was still sitting in the pew, with my head down, trying to muster up the energy to get up and walk out and then I heard a familiar voice. A friend of mine who I have come to admire and adore. I just looked up at him as he sat there with me, and I started to tear up and said, “I’m lost. I feel so lost lately.” He was so comforting. He sat there with me for quite some time listening to me talk, he held my hand which is what I needed from a friend at that moment. There has always been a special connection, I feel with this friend. We have been through similar situations in life. When we first met, he was going through a tough time and I would listen to him. He had injured himself at work and couldn’t work anymore. He had and still does, constant pain and some depression. Of course, with MS, I could totally relate. He told me that there is a reason people come into our lives at the moments God knows we need help or guidance. He happened to come to church today alone, without his wonderful family and he didn’t see me until the end and he felt like I needed a friend and boy was he correct. He was great. We sat there and talked. He helped me muster up the energy to get up and get out of there. We talked about so many different things. That all the suffering we go through is worth it. That something great will come out of all this suffering but getting there is the challenge, the strength, the fight that you need to keep going.

As we were leaving, we ran into another person who I would call a friend. Every time I see her, she always says kind spiritual words, gives me hugs and blesses me. She looked at me and right away gave me a hug and could tell I was suffering from something. So we all started talking. She is from the Philippines and, although her family is safe, she is saddened by how much her country is suffering. She is determined to find a way to help. She is an amazingly strong woman. She is organizing a food drive to send over food and supplies to her country and is looking for volunteers to help her get this done. As we were all talking, my other friend was very excited to hear this and told her he would be there with his family to help. I sat there and listened and started thinking to myself, what an inspiration she is. She is going through some of her own struggles and yet finds time to reach out and help others, strangers. As she was sharing some of her story with us it dawned on me, we all have our own struggles, it’s just a matter of how we handle them. Do we give up, throw in the towel and move on or do we pick our head up and keep trying, keep working through our own struggles. That’s a tough question to ask yourself. I’ve been told that I am a strong person, and through the weight loss and working out again, I agree. I am a strong person but I’m a strong person that has let her MS sometimes stop her. That is a hard thing for me to admit, actually it was a hard thing for me to write. MS does stop me, as strong as I am, I have let it get in the way of so many opportunities or even chances that have come my way.

She is someone who I would say is a true inspiration, and I have been told lately, that I am an inspiration. I have a hard time trying to come to terms with that for me. I mean, what have I really accomplished? Along with the help and encouragement of my husband, I have lost over 90 lbs and have been working out on a weekly basis. I know that I have heard the words before that Chris and I are an inspiration from all that we have accomplished and it finally hit me, like a frying pan to the face, we are a true inspiration. We have helped encourage others to take this healthy journey with us. My aunt and cousin are good examples. They have both changed their eating and exercise habits for the better. Our blogs that we share with everyone are an inspiration. I used to think that if I can help only 1 person with either their MS or their weight struggles, then it will be worth it opening up like this but now I’m greedy. I want to help people change their lives like Chris and I did. He has already taken the steps to do this but now I need to take them. I know that I already am with my blogs but maybe what I need to do is look into a way that I can reach out and help people in a different capacity along with the blogs. Maybe that is what I’m supposed to do when I grow up.

Today is a special day for me!

Well, I am at my goal that I set out for me to hit! I’m very excited and proud of myself for sticking with my new life in terms of eating and exercise habits! It feels great! The best part is I didn’t let my MS stop me! 

Now, with the weight loss, I need to work on me, mentally. I feel and look marvelous but with the weight loss comes a new perspective on life, I want to LIVE my life not watch it pass me by anymore! If I can work hard and lose over 90 lbs, well then what can’t I tackle!

— feeling proud.

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Before 2006

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after 2013

My MS Anniversary!

Photo on 11-11-13 at 11.46 AM

Wow!  I can’t believe it.  On November 10th, it has been 18 years since my MS diagnosis!  Wow.  Just sitting here typing this brings a whole bunch of mixed emotions.  One, I can’t believe 18 years have passed by and it seems like just the other day I was sitting in my neurologists office with anticipation that there is finally a reason to why I feel the way I do.  Looking back, it was a long journey to get to the point where we had an answer to why my body was acting the way it was.  We didn’t realize it then, but I was exhibiting signs of MS back in high school.  I went through a period of time when I was in quite a bit of car accidents, some when I was driving and then some bizarre where I was the passenger.  I went to a private school in West Hartford, CT and had a long commute each day on the highway.  I still am in awe of the trust my parents had in me to allow me to drive back and forth to school each day starting when I got my drivers license at 16 on such a busy highway.  Now that I am a parent, they must of had mixed emotions as well.  Relief that they didn’t have to make that commute each day and fear of watching me make the commute.

Back then, my car accidents always involved my right side, by either side swiping another car on the right side or taking off my right side mirror.  Obviously my parents were worried so they took me to see my neurologist for the first time.  Back in the 80’s, doctors didn’t have tools like MRIs to check for lesions on the brain, a sign of MS.  The only way to diagnose MS was to have a spinal tap and since I wasn’t exhibiting any MS symptoms, there was no reason to test for MS.  So after a battery of tests, my doctor concluded that I was either a bad teenage driver or had a neurological disorder that may manifest itself at a later time.  Little did he know back then, it was the latter.

The second wave of emotions I have is relief and excitement.  It has been 18 years!!  I’m still walking!  I’m not in a wheelchair full time or walking with a cane or walker!  I’m walking around unassisted and back 18 years ago, I didn’t know what to expect.  The only people I knew that had MS were Annette Funicello (Mickey Mouse club) and Richard Pryor, both not great examples of what this disease can do to a person. It was a very scary time.  I thought, maybe I have a few good years in me but even back then, I was a fighter.  I wanted children and I had always heard that a person with MS feels fantastic during pregnancy so I was looking forward to it!  Boy, was that the right advice!  Being pregnant and nursing made me feel like I didn’t have the disease.  As if it had vanished!  I loved that feeling.  It still had a way of reminding me that it was there, but the every day pain, spasms and stiffness were tolerable.  Maybe it was the excitement of the baby, not sure but what ever it was, it felt great!

When I was diagnosed, there were only 3 drugs available for treating MS, known as the ABC drugs, Avonex, Betaseron, and Copaxone.  The first drug I tried was Avonex, a once a week shot.  I, of course because nothing seems to come easy for me, had a bad reaction to the medication, I was actually worse on it then I was before I started, meaning I had a lot of flare ups while on the Avonex.  Now, it was around the time of my wedding so I did have a lot of stress too at the time but the doctor wasn’t happy with the results so he took me off of it.  It was a while before I started another form of drug therapy because I was pregnant and or nursing for about 4 years.  After I had both of my children, my doctor started me on Rebif.  It was the new drug from Europe that they were seeing good results.  I was on Rebif for a long time, about 5 years.  I didn’t mind this drug.  The side effects were tolerable.  I would take my Advil, give my self a shot of Rebif, then off to bed.  The nice thing about this drug was it is a shot 3 times a week.  So I would administer the medication on Sunday, Tues and Thursday nights, giving my self the weekend off.  Eventually, my body stopped reacting to Rebif so after that we tried a few other drug therapies.

I still can’t believe how well I am doing after 18 years!  Wow.  That’s really all I can say.  I’m in awe of myself and this disease.  Yes, I have had bad times and I still have my days but I never thought 18 years ago that I would be feeling this good.  The real turning point, I think for me, was losing over 90 lbs and finding a way to exercise that didn’t put my MS in a tail spin.  I just feel so good about my self and how I look and how my MS has responded to all the changes I have made in my life.  I had an MRI recently, and while I was in that machine for over 2 1/2 hours, I had time to think.  First, I was hoping after losing all this weight that there would be a lot of room in that machine, well no there wasn’t.  Second, I just wanted to hear the doctor say that it was gone, that there were no more lesions and miraculously, it disappeared.  Now, I know the second part was just a dream but I still had some hope.  Well, when I got the results I was very happy.  My MRI didn’t show any new lesions and it was status quo from my last MRI which was over 2 years ago!  That is huge for a person with MS.  There was a time where my doctors were ready to take my off of the Relapsing Remitting form of MS category and put me in the Progressive form of MS category, so this is very exciting!

Well, here I sit on November 10th writing this after spending my morning watching my husband teach one of his cooking classes at Williams Sonoma where I stood the whole time!  Yep.  I stood for over an 1 hour!  Actually it was more like 1 1/2 hours that I stood!  I never would have imagined that I can do that 18 years ago.  After the class, I came home full of energy, made a pot of chicken and rice soup (GF by the way), washed over 3 loads of laundry, folded and put away and typed my blog.  That is a full day for me and it feels great!  18 years ago if you had asked me where I thought I would be with this disease, I would have said either using a cane or a walker or wheelchair bound because that was the mentality 18 years ago.  Well, guess what, that’s not the mentality anymore, at least not for me!  Bring it on I say, let’s see how I am in another 18 years!

I have MS but MS doesn’t have me. What does this mean?

I have been included in a special community on Twitter these days, the MS community.  It’s funny how we all tend to gravitate towards each other. There is definitely some comfort in it, knowing that I’m not alone. I was asked a question on twitter, a few weeks back, by a young female, newly diagnosed and she is going through a tough time with her diagnosis and symptoms. She asked me what that meant, “I have MS but it doesn’t have me.”  She didn’t understand how I and others could be upbeat about this disease and it started me thinking, what does it mean?  Now, it could mean different things to different people but what does it mean to me. So I’ve been thinking a lot lately about her question and I’m kind of at a loss.  That’s why I haven’t blogged in a while trying to answer her question is harder than I thought.

I remember the first time someone said it to me. I was going to PT to help my balance and my therapist asked me to give a talk about MS to some of his students.  It was me and another patient of his. She was definitely struggling more with this disease than I was at the time.  If I remember correctly she had progressive MS while I was and am still in the RRMS (relapsing remitting MS), phew.  He asked me to go first.  He asked that we just say a few words about what it’s like to have MS and what our daily struggles are. Now, if you know me at all, I didn’t prepare anything, just winged it. I wrote down some key points I wanted to talk about but that was it. The other woman, on the other hand, wrote a dissertation. So needless to say, I felt like I was unprepared but I talked about the points of MS I wanted to discuss. The students kept asking me questions and asked me to be their “dummy” in trying out some of the therapy techniques they were learning. I had a blast!  I loved it and the students enjoyed it as well.

When I went to PT the next day, my therapist and I were discussing the differences between me and his other patient and that’s when he said it to me.  Looking back now, I understand what he meant, her life revolved around her MS, mine didn’t. I’m married, have 2 healthy kids, worked full time and had fun on the weekends with friends and family. She, on the other hand, was alone. Her husband had left her because he couldn’t “deal” with all the obstacles MS throws at us. Nice. Really, he couldn’t deal?  Try being the person who gets all the “fun parts” of MS thrown at them.  He at least had a choice, she doesn’t. I remember listening to her talk and feeling sympathy for her, everyone felt that way in the room but when I spoke, I had them laughing and enjoying listening to me, I had them captivated. I was having fun, discussing the highs and lows of this disease but tried to make it more informational than personal.  My MS was in the back ground, like back ground noise, instead of being the focus of my life.  The MS was there and it would remind me of that fact but I worked hard to not let it over take me, not let it stop me from being me.

Now, I’m not saying I don’t have my moments.  Of course I do.  How could I not, if you are familiar with MS and know some of the fun stuff it can throw at us, you would understand.  There were opportunities that I passed on because I was afraid that I may have an MS moment or worry about how much walking or standing would be involved.  I do regret passing on things, sitting on the sidelines again watching my friends or family have a good time without me but unless you have experienced any of this, you truly can’t understand the embarrassment, humiliation and loss of self worth you experience.  That to me, at times, can make it worth passing up on opportunities.  It still stings and hurts, feel left out at times, but what  can I do, I have MS and as well as I can control this disease, it has a way of reminding me that it’s still here.  I still can’t walk long distances, so every Halloween, I hand out the candy.  I try to find ways that I can participate in things without getting too tired.

So, I soldier on.  I still work out 3-4 times a week, I’m not letting it stop me from taking care of my self, because since I was diagnosed over 17 almost 18 years now (my anniversary is fast approaching, Nov 10th), I have lost a piece of my self.  Since the weight loss and most importantly the exercise, I feel I’m gaining a part of me back, the part that used to enjoy being very active and social. The part of me that didn’t get left out or pass on fun opportunities with my friends.

So yes, I now can tell her that I do know what it means to say “I have MS but it doesn’t have me” because I fight, I fight hard to not let it overtake my life, my family’s life.  That’s why I worked hard to lose over 85 lbs with the help of my husband and continue to work out on a regular basis.  If I can’t have my old self back before the diagnosis, then I’m going to work hard to get pieces of it back, the pieces that I miss the most.  The pieces that don’t have me always sitting on the sidelines watching everyone else but instead being a part of it.  The part that likes to have a good time without being afraid of what might happen.  I’ve learned through all of this that everyone has some obstacle that they are fighting.  It’s just a matter of how you handle it, and I choose to fight.  At least with the MS I have some idea of what I’m dealing with on a daily basis.  It may throw some curve balls at me time to time and it can be depressing, but I do the best I can to pick my self up, dust my self off and battle on because that’s what I choose to do.  I choose to fight.  I DO HAVE MS BUT IT DOESN’T HAVE ME!

Watching my friends and husband at the Rugged Maniac in Sept 2013

Watching my friends and husband at the Rugged Maniac in Sept 2013

My brief hiatus from my MS and the journey of losing weight begins, sort of…

It’s hard to remember being 265+ lbs. It was 1999, I was happily married, or so I thought, moved into a new house and just found out I was pregnant! What was a happy time quickly became a scary time. I’m 265 lbs and pregnant. Wow. The average person can put on 20-30 lbs I’m already big. I don’t want to get any bigger. The thought of gaining 20-30 lbs more frightens me. What the heck am I supposed to do?

So that’s when my journey of losing weight kind of began.

My OBGYN was concerned as well.  We talked and agreed that I would eat healthy and not starve myself but put on as little weight as I can. Her theory was if I’m eating healthy, the baby will get enough nutrients and vitamins to grow.  Ok, I thought with some trepidation, but I’ll try it.  So I did try it and in the end I only put on 5-10 lbs during my first pregnancy, a feat I didn’t think I could achieve. After my daughter, Sydney, was born, I lost over 20 lbs! The doctor said if I wasn’t pregnant I would have the lost 20 lbs.  So I kept thinking, if I could accomplish this while I was pregnant, why can’t I eat healthy all the time and get more weight off?

I was down to about 240 lbs! Now I’m on my way! Well at least that’s what I thought. Down 10 lbs up 15. It was a constant battle. Then my MS doctor in Boston wanted me to get pregnant again, right away, otherwise he was putting me on new meds. So I was very lucky to quickly get pregnant again.  Now it’s June of 2001, and I weigh approx. 240 lbs. Ok I thought. I’ve been careful before with my weight during my first pregnancy, I can do it again I told myself! This time it was more of a struggle for some reason to eat healthy but I was still able to only put on about 10 lbs. Ok, not as good as before but still trying to eat healthy and enjoying being pregnant! My son, Hunter, was born, healthy and happy and I lost another 20 lbs! Now I’m down to 230 lbs! I can do this, I told myself! Yeah and the roller coaster ride began.

Now, when I was pregnant and nursing (nursed both kids for a year), both times, I felt fantastic.  As if I didn’t have MS. I had about a 2 year break from this disease.  It was great.  I don’t know what it was, some doctors say it’s all the hormones.  I don’t know what it was nor did I care at the time but I felt great.  I could walk better, my legs weren’t stiff, although I did still have the muscle spasms at night and that was tough because I couldn’t take my meds.  I remember I used to walk my neighborhood a lot.  At that time, there were 2 other families that had babies all around the same age and we were known in our hood as the “stroller patrol.”  It was fun.  They would walk the entire neighborhood (about a good mile) with the strollers and I would only be able to make it about 1/2 way before I needed to sit and rest and wait for them to get back to the halfway point.  Before I was pregnant, I couldn’t walk nearly as far. That was always tough sitting there waiting.  I never would say anything, just put on my “plastic smile” and say go ahead.  I’ll be here when you get back.

Well, after Hunter turned 1, the ugly head of MS reappeared.  I remember it well.  I was at Hunter’s 1st birthday party at Gymboree and I fell.  Not only did I fall but I had trouble getting up.  I looked up at my husband with fear in my eyes and I think in his.  We both knew at the time what this meant.  The MS and all of it’s lovely symptoms were back. Now, I have the full effects of the disease back but this time I now have 2 children to take care of, a 1 year old and an almost 3 year old.  It wasn’t just me and my husband anymore that I had to take care of, we are a family of 4.  That was scary as hell.

This disease, at times can be such a lonely one.  I’m sure MS isn’t the only disease that can make you feel isolated, but I was always such a social person.  Loved being around my friends and a part of all the action.  For example, sitting on the side of the road waiting for everyone, including my family, to get back from a walk was very lonely.  Being at a party where everyone is standing around talking and I have to sit because my legs get tired, is so isolating.  I’ve never told anyone these feelings but they sting,  It’s just another reminder of the things that this dreaded disease took away from me.  Trying to get up at the birthday party was just another reminder that although I had my husband, there will be times when I am on my own trying to not only take care of the kids, but also take care of me.  This is where, I think, my goal of losing weight got lost and the fear of the MS took over.

The year around my wedding was a tough year.  With all of the stress that planning a wedding brings on, my MS was in sort of a tailspin.  I would have about 2 1/2 weeks of each month in a wheelchair and then go on a very strong IV solumedrol therapy, then about a week later I could walk again, but then the cycle would start all over.  I was so determined to walk down the aisle to my husband and dance my first dance with him along with 2 other dances, one with my father and the other with my new father-in-law.  I was working hard at trying to achieve this goal.  I was very overweight, from all the Friendly sundaes, and went on a diet.  I lost about 50 lbs for my wedding.  I looked good but my legs still weren’t cooperating.  The Wednesday before my wedding day, was a very depressing day.  I was trying on my wedding gown in a wheelchair, but I refused to give up on my dream.  I was proud of myself for losing the weight but I still couldn’t walk.  At this time in my life I was not giving in to the disease.  I was going to walk down that aisle and by some miracle or just all the steroids pumped into me, I accomplished my goal.  I didn’t have the energy to do much else but I spent my wedding day wheelchair free, I didn’t let the MS get to me or my weight loss so why did I give in after having my two children?

This disease can be so humiliating at times and maybe I finally succumbed to all of the humiliation or just the disappointments that can come along with it as well.  I’m not sure.  But I do know now, that after all I have gone through and what I have accomplished in these last two years, I don’t want to go back to that time.  Sure, I still have my “woe is me” moments, but I think I deserve them.  I put up a brave front all the time and it’s OK to give in once in a while, but lately, my giving in moments are few and far between!

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Remember, we may look disabled, but we are capable of so much more!

I was 25 years old when I finally heard the words, “you have MS.” I remember it well. November 10, 1995, I was in my neurologist’s office with my father and my boyfriend at the time, who soon became my husband, when those words were said to me. It was a sense of relief for me. I had been having strange symptoms since July of that year and deep down I knew it was bad. In grade school I remember being told about MS and MD. I knew Muscular dystrophy was worse but didn’t know much about this multiple sclerosis disease and now I have it. I think one of the hardest things about this diagnosis was seeing everyone’s face when I told them. See, there was a sense of relief for the person who is diagnosed with a disease, almost jubilant because there is a reason you are not feeling well but it’s a different feeling for the people that love us. I finally knew what was happening to my body, why it was acting weird. I was experiencing muscle spasms, numbness and tingling in my legs and now I knew why but now what?

Even though I was relieved that we finally had an explanation, the people around me were not as relieved.  They were worried, scared.  I could see it in their faces and hear it in their voices. I knew at that time I needed to lose weight, I was very heavy and it probably would help me with my gait, but for some reason that diagnosis didn’t become my reason for starting my weight loss journey instead I was more focused on trying to figure out how to stay out of a wheelchair or lose my eye sight,  That’s pretty much what I was facing so losing weight at the time wasn’t a priority.

When I was diagnosed, it’s hard to believe this, but there wasn’t the Internet like there is today. I had to go to the bookstore and library for any information on MS. I remember taking a trip to Italy to visit family and it was on the flight to Milano that I was reading a book about MS. I had a lot of the symptoms and feelings the book was describing about MS, it was as if I was reading a story about myself.  The book did talk about changing your eating habits and exercising but I wasn’t ready to change, not yet.  So when the doctor diagnosed me, I wasn’t all that surprised but my family on the other hand was devastated.  Hearing that horrible sentence, “you have MS” meant different things to me than it did to the people I loved.

Looking back at November 10, 1995, was a tough day for my boyfriend, Chris. He had just heard the news that the woman he loved had a debilitating disease and that his mother had breast cancer, stage 3, which back then was a horrible diagnosis. I knew at the time that he was a strong person but how does one person handle this?  I remember thinking, how the heck am I supposed to process all of this never mind him.    When you are the person who has a disease, you know how strong you are and how you can handle it, it’s the people around us that we worry about.  How could he continue to love me and want to be with me not knowing what our future holds, will he be pushing me in a wheelchair for the rest of my life?  Is this something he is capable of handling?  I just didn’t know and that frightened me.  Until Christmas Eve 1995, he took me up to visit his family for the holiday and took me down to see the Boston Commons all decorated.  As we were walking around, he suddenly got down on one knee and asked me the most beautiful question I have ever heard, “What are you doing for the rest of your life?”  Any insecurity or doubt I had went away.  He wanted to commit himself to taking this journey with me, this unknown.  That takes a lot of strength and to that I will always love him.  Now, there were some freak out moments, still are but less of them, but even though he may have had his doubts at times, he was waiting for me at the end of the aisle on our wedding day, June 14, 1997.

My mother, on the other hand from what my sister and brother told me, couldn’t stop crying. I had moved out of my family home and into an apartment with Chris back in June of the same year. I laugh to myself looking back because my mother kept asking my doctor if this strange new situation I was in, living with Chris, could be a factor.  She wouldn’t let it go and then I had my father who kept asking the doctor if he can run a Lyme test on me, again.  They obviously had a difficult time coming to terms with the fact that I was sick, not just sick and they can make it better but sick with a disease that they can’t fix.  I came from a very sheltered, privileged family.  My father is an attorney who likes to develop land and build houses on the side, a true entrepreneur.   We had money, not extremely wealthy, but my father worked hard.  I was spoiled; I admit it and I loved it.  I’m not saying all of this to brag but you need to understand how easy life was up until this point.  Looking back, it was a lot of fun, but at the time; I don’t think we truly appreciated what we had until I got sick.   It was this diagnosis that forever not only changed my life but my family’s life.  All of a sudden nothing else mattered but our health and our family.

Although it has been almost 18 years since my diagnosis, I can still see that look in people’s eyes when I tell them I have MS. Some people have a look of surprise.  I remember a good friend recently telling me that if I hadn’t told her I have MS she never would have guessed because I just keep going like the Energizer Bunny.  Now that may be a stretch because I still have the drunken sailor walk, as my husband likes to call it, but that comment felt really good.  I know that all of my hard work at the gym has helped with my balance, stamina, weight loss but to have someone tell you that they never would have guessed that you have a debilitating disease, is AWESOME.  I may have “special legs” that I call them to my kids and nieces and nephews, but I can still take care of my family. I may never be able to run again, or walk the whole grocery store or mall but it’s the little things.  I get on a scooter and scooter around those places!  The one thing I want to leave you with is please try to not rush by the people you see in a wheelchair or on a scooter as if they are non existent or don’t matter because we do!  I will never forget the time I was at Mohegan Sun with friends and a good friend of mine offered to ride the scooter back for me.  As soon as he came back the next morning, he gave me the biggest hug and said what an eye opening experience it was for him.  He felt as if he was in the way and people were rude to him.  That’s the life of a person who may need a little help at times, be it in a wheelchair or in a scooter.  Remember, we may look disabled, but we are capable of so much more!

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MS Walk 2012 with the people that make me want to get up every day and walk!