November 27th, 2013

I was diagnosed with MS in 2002  although my symptoms date back to when I was 16. I had a severe bout of fatigue that the doctors wrote off as mono, although my boyfriend at the time who is now my husband never contracted the disease. After a month or so the fatigue got better, but my energy has never returned to what it was before I had “mono.” Then in 2000 I had severe dizziness for an entire month. I had an MRI that was clear, and was told I had everything from vertigo, an inner ear infection to panic attacks. That last one was a tough pill to swallow. Being told it was all in my head, that I was responsible for my dizziness. That too went away and I was fine until 2002 when I got optic neuritis and was diagnosed with MS. I was honestly relieved. I was worried I had a brain tumor. I could feel something in my brain. Finally they knew what was wrong with me. That it wasn’t all in my head. Well, it is in my head, but you know what I mean. I hadn’t felt right in a long time and I now knew that it was very real and I had a name to go with what I was fighting.

 As far as MS therapies go, well, I kind of got around. I started an injection therapy right after I was diagnosed (I’m not allowed to say names, those pesky FDA rules). I viewed my therapy as a punishment. First I was diagnosed with MS now I have to take a shot all the time? So my doctor switched me, then switched me again because of intolerable side effects. I was on my third therapy for seven years, did an infusion therapy there in the middle, and that brings us to March of this year. I’d been on injection therapies for 11 years and I was done. My skin couldn’t take it anymore. Tecfidera fit the 4 main criteria for my next therapy. It was safe, the side effects were tolerable, it worked, and it wasn’t poky. And I did get side effects. I had flushing and flu like symptoms for 2 months, then they went away pretty quickly. I still get flushing every once in a while, but it’s nothing major. My conversation with my doctor concerning Tecfidera went something like this, “put me on it.”  He finally did in April (my doctor’s one of those research everything fully talk to the reps make sure it’s safe blah blah blah) and I’ve been on it ever since. I take it first thing when I wake up in the morning and last thing before I go to bed. My MS has been stable and I had an  MRI in October that was unchanged so I’m confident that it’s working for me.

 When I was first diagnosed, everyone would ask me, “how are you?” “This must be so hard for you.” “You must be so scared.” I had the same answer for everybody “I’m fine!” “I’m fine I’m fine I’m fine.” I wasn’t fine. The truth is I didn’t want people to know how scared I was, how angry I was because I thought it would scare them. Scare them away. Why would they want to be around me when I was going to be so sick all the time? Why would my husband want to be married to me knowing what my future would be? Of course I saw my future in the bleakest way possible. I remember reading when I was first diagnosed how people with MS have 20 good years. Great. I was dx when I was 21, so I have until I’m 41? (Well guess what I’m 33 now and still going strong!) How could I share that with someone? It would make them run for the hills, which is what I was doing. Running from everything. I finally couldn’t take it anymore and opened up to my husband. We had been married 8 months when I was diagnosed. I told him I was afraid he’d leave me, that he didn’t sign up for this. I even gave him permission to go. Told him that I understood if he didn’t want to stick it out. Who knew what our future would be? What my future would be? He of course told me how much he loved me and that he would stick by me no matter what. 12 years later he’s still here, so we must be doing something right. It is vital that you allow yourself to feel emotions. Whatever they may be, allow yourself to be scared, mad, depressed, uncertain. Get them out so you can get on with your life. I journal and write my own music. That is my outlet. Some things I don’t let anyone else read or listen to. I don’t want them to know. They’re my darkest thoughts, but I get them out so I can again look around me and see what I do have.

 And it’s so important that you are able to have a positive attitude and be grateful for what you do have. It’s a balancing act because like I was just saying, it’s vital to get those negative emotions out so that the positivity can come through. If you need further motivation, your health needs you to have a positive attitude. Being depressed can magnify MS symptoms. Pain, fatigue, and cognitive issues can be worsened as your mood declines. My personal motto is I live for today and today’s a good day. Tomorrow may not be but that’s not something I need to worry about. I live for today. I’ve found that MS has come with some positives. I am so grateful for everything that I have. I’m grateful that I’m standing here before you today. I’m grateful to be able to share my story with you. I’m grateful for the lessons MS has taught my kids. They’re not scared of seeing someone in a wheelchair, pushing a walker, or using a cane because mommy has used those things before. I did a presentation at their school when my son was in K and my daughter in 2nd grade. The most fascinating part of it was when I took a child and stood them behind my walker, then stood them beside it. I asked if they had changed “yes” they said. So I took out a tape measure and measured them in both places. “Are they the same?” “yes” they replied and they were puzzled by this. I asked if this was still their friend. If they were still nice. If their hair was the same. They all nodded with more and more understanding. That is the gift my children have. They know that a person is a person whether sitting in a wheelchair or standing behind a walker. And I am grateful for that lesson they have learned. I don’t worry about the little things. They don’t matter. What matters is living for today, being with my family, and enjoying every moment I have with them.

 I used to be very self conscious. I got over that real quick having MS. I’ve learned instead to have a great sense of humor. MS can be funny. It can be laugh out loud, tears in your eyes funny. But you have to allow it to be. You have to see the humor in the situation. I used to babysit a little boy. He was 4 at the time. I was walking down the stairs and missed, I mean missed, the last step. Flying down the stairs landing on my face, I looked up to see him standing over me with a huge smile on his face, screaming “that was awesome!! Can you do it again!” Learn to laugh at yourself. When I was really sick I would use my wheelchair to save energy. On one such occasion I had forgotten the whatever they’re called that you put your feet on so my legs were curled up on the seat. I was pushing myself along in a department store, and if you’ve ever used a walker or wheelchair in a department store, they are not made for us. The clothes were so close together, and I got stuck. My wheelchair wouldn’t move. I had to get up, walk around, unstick the wheelchair, then go and sit back down and scoot around again. I got so many dirty looks. But I just kept on going. Learn to laugh at yourself. Being a married couple I sometimes have disagreements whith my husband when he does something wrong. He’s always wrong of course. When I get overly emotional, my legs tend to get a little jellyish. There’s been occasions when I’ve gotten extra mad, wanted to storm out of the room, but couldn’t because my legs weren’t working. Instead I find myself laying on the floor glaring at him while asking for help. Learn to laugh at yourself. I had a pretty severe exacerbation the beginning of last year. I couldn’t walk and I mean couldn’t walk, couldn’t even stand. I was in good spirits in the beginning, knew being upset or sad wouldn’t make me walk. When I was in the ER waiting to be admitted, one of the nurses even came to me and said “you can freak out now.” Well day two I started to freak out. I still wasn’t doing well and was given a walker. I had to call a nurse to help me go to the bathroom. I’m a very stubborn person and gave a polite “yes ma’am, I’ll do that every time.” They threatened to turn on the bed alarm so they would know when I got up so I complied. I was finally discharged on day 3, after learning to use my walker. I was given the rainbow belt to wear so if I was going to fall, Brad could catch me and was sent on my way. I was depressed, degraded, emotionally and physically exhausted. I wondered if this was it. The end of my independence, if I would be using a walker or a wheelchair for the rest of my life. In the middle of my pity party and depression a friend came to see me. She handed me a little brown bag “I brought you something” she said. Oh great. A pity gift. Sorry you’re decrepit here’s some foot cream, maybe a card. I stuck my hand in and felt something soft, round, with a bow. Pulling it out I beheld a pair of knitted balls. And I mean balls, with a little bow on top. “They’re for your walker,” she says. And I lost it, I mean laughed so hard and for so long and it felt so good. I immediately put them on my walker and pushed that sucker around with my balls going to and fro to and fro. She had worked a miracle. My walker was funny. And it was mine. Those balls made the walker mine, not just something I pushed. Later I put a bell on it, and my kids decorated it with stickers. When I pushed that sucker I got so many looks. The self conscious side of me had come again in using a walker, thinking everybody would be staring at me, but now I knew they were staring at my balls. And boy were they. I got smiles, nods and outright laughs. I was leaving the hospital after my infusion and a woman bowed her head to me saying, “God bless you.” Then she stopped. She stared at me, stared at my balls, stared at me. Then she broke into the biggest grin and exclaimed “Oh my god your balls! I love them!” My friend had made that walker funny. And for that I am eternally grateful.

Whether a tale is full of sorrow, remorse, happiness or tragedy does not in and of itself depend on the actual events. It depends on the telling of those events. My walker, wheelchair, forearm crutches and cane are gathering dust in my crawl space. For that I am grateful. I may need them again, and when I do I’ll strap on my balls and push them with pride, knowing that everything passes. I live for today and today’s a good day. Thank you for sharing your day with me and allowing me to share my story with you

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Tags: | Posted in Speeches |
November 17th, 2013

I’m a MS drug whore. I’ve been on 5 of them in 11 years. The drug to which I lost my virginity was Avonex. It was a difficult pairing. Too long, to thick, just not the right fit. The needle scared me. My husband gave me my weekly injection and I cried before every one. So I started taking it every 8 days, then 10, then not at all. Looking back I see now that I viewed that injection as a punishment. The universe was punishing me with this brute of a shot because I was sick. As if being diagnosed with MS wasn’t enough, I had to have this monster in me once a week. My doctor thought I would do better with the smaller needle so I was switched to Betaseron. Betaseron soon came to be synonymous with depression. I was already depressed, but now it was much much worse. Running out of options and sticking with the AB…alphabet theme I was put on Copaxone. The daily injection didn’t sit well with me at first, but low and behold the damn thing worked. Knowing that it was pretty easy shooting up every day. I did that for 7 years. About 5  years in I had a severe relapse. I couldn’t walk…at all. It got better. I could scoot around with my walker or cane, but that wasn’t acceptable to me as a 32 year old. So I had a 4 month stint on Tysabri, then went back on Copaxone. After 7 years the daily injection thing started to ware on me. My skin couldn’t take it anymore, and neither could I. I was beginning to have the nervousness again before each injection. Around this time Tecfidera came on the market and I pretty much told my doctor to put me on it. Now. Soon. Pronto. So shortly after it came on the market I started the magical pill. I’ve been on that for 7 months now and holding strong. There is no miracle drug. I wish I could tell you there was. Nothing I’ve been on in 11 years has cured me. Some have made me feel better. But MS always creeps in in one form or another. Who knows what is on the horizon. Hopefully there will be a therapy soon that not only stops MS in its tracks but reverses the damage done. Until then I’ll stick with my little pill. Yes I’m a pill popper, and proud of it. Once in the morning, once in the evening, and hopefully I’ll be holding strong.

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Tags: | Posted in Thoughts |
November 15th, 2013

My kids (6 and 8)  run in and tell us we must come see their snowman. They are most excited about the fact that it has 3 legs. When asked if the snowman is a girl or a boy my daughter says girl and my son says both. After thinking about it, my daughter agrees.
“What makes it both?” I asked
My son sticks his arms up over his head and says “because girls are always doing this, and boys are crazy because they usually want 3 legs!”

True story

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Tags: , , | Posted in Thoughts |
November 15th, 2013
just because you say it louder
doesn’t mean it gets in deeper
in my skull in my sould
in one ear never near
 
let me be
let me see
who i am
with out your scams
with out your insults making me small
making me feel I am nothing at all
 
but I am strong I don’t need
you to tell me what I can be
you to tell me who I should see
in my reflection
I see me
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November 14th, 2013

In February of 2012 I was admitted to the hospital for 3 days because I couldn’t walk. And I mean couldn’t walk, couldn’t even stand. I had a pretty good attitude in the beginning. The nurse in the ER thought I was a little too perky and told me it was OK to freak out.  At the time I didn’t see the point in freaking out. It wasn’t going to make me walk again.

That positivity ended after day 2. I was pissed, and I mean PISSED, spouting the “it’s not fair! why me!” and every other whiny sentiment there is. Let’s be clear, I’m no newbie to MS. I was diagnosed in 2002 and have had walking issues before. Somehow this one seemed different. It wasn’t just weakness in my legs, they simply weren’t there. I may not have had my legs but my stubbornness persisted. I was on strict orders to have a nurse help me to the bathroom. Seeing my “Yes, ma’am I sure will…” smirk on my face, they threatened to turn on the alarm on my bed. Reluctantly I complied and allowed a nurse to help me take a shit. Seeing how I needed more fun in my life, the walker came. I practiced dragging myself up and down the hallway, pushing the tennis balls at a snails pace. I even had the rainbow belt tied around me so if I started to fall the PTs could stop me from face planting. Day 3 we worked on stairs as I lived in a tri-level. Only then was I allowed to go home….with my walker…..and my tennis balls.

So I got home and cried. And cried. And cried. The world was so cruel. So unfair. A walker? What the FUCK! How would I suffer the humiliation of using it in public? I vowed to stay in the house until my legs got their shit together. There was no way in hell I would show my face at my kid’s school, or any other public place, with tennis balls at my feet. Not going to happen!  With this mindset firmly in place, a friend came to see me. She handed me a little brown bag and smiled. A present. A pity present. Nice. Let’s give the cripple some foot lotion or a “I’m sorry you’re decrepit” card. I stuck my hand in and felt something soft. Round. With a bow. Pulling it out I almost peed myself. It was balls. Knitted balls. And I mean knitted testicles balls. “They’re for your walker,” she said. I laughed. I hollered. I forgot about my walker. All that mattered at this moment were these beautiful brown knitted balls I was holding in my hand, with a cute as a button bow on the top. I immediately stumbled (almost said ran, but alas no,) over to my walker and tied them on. They swung to and fro, to and fro as I pushed my “ballsy walker” around the room. I hugged her, holding back tears. She had worked an absolute miracle. My walker was funny. My walker had a sense of humor. And once again, so did I. I pushed that sucker with pride, knowing that if people were staring at me, they were really staring at my balls….and they were. I got many devlish grins, outright smiles, and pleasant nods. One woman who was walking past me bowed her head and said “God bless you.” Then her expression changed. She looked at me. She looked at my balls. She looked at me again. Then she busted out laughing screaming “OH MY GOD YOUR BALLS!!! I LOVE IT I LOVE IT!!!” They made everyone’s day. Gave everyone a reason to laugh at a walker. Now if I have a friend who is having a hard time walking, I give them some balls. They always get a laugh and that is the miracle my friend has created. She has made disability and walking difficulties funny. Hilarious. A laugh out loud, shit giggle fest riot. And for that I am eternally grateful. Plus I get to tell people, “stop staring at my balls.”

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