A sneak peek in one week of my life with MS

Day one:
Today has been a good day. I forgot a few words as I spoke to people from work and as I went to local businesses asking them to put up flyers for my vendor fair on Saturday. I am hoping they didn’t notice. The itching is still occurring on the back of my thighs. I try not to think about it and then it isn’t that bad, but today it got the best of me. I scratched it so hard in the shower that it is now burning. I will have to put some steroid cream on it before it gets any worse. Monday I give myself the shot in my left butt cheek. This isn’t such a sensitive spot, but I find myself pulling a muscle in my shoulder trying to reach with both arms every once in a while. It’s a subcutaneous shot so you have to pinch the skin with one hand and then do the injection with the other.
I love that the weather is warming up, but with that comes the flare up’s. I would love for it to stay 70 degrees year round, but that is a bit unrealistic. I think back to the days of the hotter the better, not having air conditioning and being fine with it, warm sandy beach vacations and soaking up the sun all summer long. That is one thing that I miss the most since I have been diagnosed with Multiple Sclerosis.
I am excited, but yet anxious for an interview that I have with a reporter tomorrow at 11 AM from channel 4. Stacie from work went over some questions with me to help prepare me for the interview. I was so nervous when the woman from Princeton interviewed me I thought I needed the practice, but Stacie thought I did a good job even with my tears so that boosted my confidence. 

Day Two:
I didn’t sleep the best last night and then I had built up so much excitement and anxiety for the interview with Jamie from WCCO (Channel 4) this morning, but now I feel like my body is crashing. It was fun talking to her and the camera man and I really should not have been as nervous as I was. I hope it turns out well when it airs on Saturday morning.
I keep replaying a question she asked me in my head, “How does MS effect your body now?” My response was. . . . The unknown. You never know what tomorrow will bring you when it comes to this disease. Reuben leaves for work very early in the morning which means I am here by myself with the kids when we all wake up. What happens if I wake up and I can’t see? What happens if I go to stand and my legs give out on me and I can’t walk? This terrifies me and I try not to think about it, but it is part of my realty now that I have MS.
The injection tonight is in my right arm. Reuben has to help me with this spot. It goes in on the back side of my arm and I can’t reach it on my own. This spot can be sensitive on the right side, but it usually stings and then itches after a few minutes. Tomorrow when I wake up my arm will feel a little heavy as well.

Day Three:
UGH!! Wednesday. . . This is the most dreaded day of the week for me because I know it is my left arm tonight. Reuben helps me with this arm as well since I can’t reach it myself. This is the worst spot to give my injections. It hurts so badly at times I am tempted to double up on another injection site, but you have to rotate your sites so you don’t damage your skin or the tissue that is just underneath it. I can feel the pain already as soon as he rubs the alcohol swabs on the back of my arm. I brace myself and then he puts the needle in my arm. The pain runs down my entire arm and then I feel him squeeze the medicine into it, then it begins to sting. He pulls the needle out and I feel the pain once again. It immediately starts throbbing and then itching. Oh man, how I hate this spot!!
I am so excited for the event that my 2 sisters organized to help raise money for our team. They are both so supportive and I realize what a great group of people I have backing me. My husband, my children, my family and great friends. I think of all of you when I have to do my injections and I know it is all worth it.

Day Four:
What happens to you when you get stressed? For me it brings me back to December 2008. This was when my face started itching for two months before I was officially diagnosed with Multiple Sclerosis. I came home today and found my husband with bad news for us. There is something wrong with the cobalt. This isn’t the end of the world I know, but it defiantly puts stress on us. After he told me I could feel it coming on right away. I rub my face to try and make it go away, but that just makes it itch more. This feeling of tiny bugs crawling all over begins to overtake my body and I know I have to do something to take my mind off of it. There is no amount of scratching or lotions that will make this sensation go away so I have to not think about it. I busy myself with the chores of the evening and finally the tiny bugs go away until the next time I feel stressed.
Today’s injection site is in my stomach. Every week I rotate the right and left sides. This one stings like a bee sting when the medicine goes in, but it won’t hurt until tomorrow. Once I put my pants on I can feel it rub against where I gave my shot and it gets a little irritated.

Day Five:
Post-it notes have become my new best friend at work. When I am at home I have a pad on the refrigerator as well as my phone I can put reminders in. Another thing that has been affected since my diagnosis is my memory. I need to write things down or I am bound to forget them. If someone stops me at work and I don’t have a pen and paper by me I, am upfront with them and tell them they need to write it down or I will forget. Conversations with people can be difficult when the words don’t come to me fast enough. I have to think about what I am going to say before I speak, but even then it might not come out the way I wanted it to. There has been a few times where I have heard, “Susie, I told you this already.” I apologize and people seem to be understanding.
It is onto the front part of my thighs for the next 2 days for my shot. Tonight it will be my right leg. The hard thing with this site is it bruises pretty easy and you have to stay away from the spot for 2 weeks. Good thing I have big thighs though so I just find another part to do it on. It depends on where I do the shot if it stings or not and then an hour later it will itch like crazy. Tomorrow I will have a big red mark where I did the shot and then it usually turns into a bruise. A few days later it will get very hard and feel like there is a ball under my skin and it will be tender to touch. Needless to say my legs look pretty beat up and I won’t be wearing shorts above my knees anytime soon.

Day Six:
What a great day today was. It started out with watching myself on the news segment this morning. 

Here is the link for the story http://minnesota.cbslocal.com/video/?autoStart=true&topVideoCatNo=default&clipId=6851436#.T2S1aX2eZrs.facebook

The kids really got a kick out of seeing us on TV. Then lots of people were in and out of the Vendor Fair that we have as a fundraising event for “Susie’s Stars”. Got home and I was exhausted though. It really doesn’t take much to wear me out especially with it being humid like it was and then warm at the end. Another symptom that creeps up on me every once in a while is tingling and numbness in my extremities. I am sure a lot of you have felt your foot fall asleep then you move it around and it seems to ‘wake’ itself up again. My hands will go numb every so often and nothing ‘wakes’ them back up. I drop things a lot. I am not sure who drops things more, my kids spilling their milk at the dinner table is a common occurrence, but I seem to be even clumsier when my hands won’t cooperate with me. You will often see me carry things with both hands whereas someone else would be able to do it with one. I like having the security of both my hands working with me so I won’t drop things.
I moved over to my left leg tonight for my injection. I get the same itchiness and then the hard ball where the medicine went in. Each and every time I do my shot I wonder how much longer I can do these for. They are small needles, but they hurt and I wish I didn’t have to do them.

Day Seven:
Today is the end of MS Awareness Week. I hope you enjoyed reading what it is like to have MS and what a typical week is like for me. I think this was therapeutic for me as well. Some nights were harder to write then others and it got very emotional for me.
I keep replaying in my head what a woman told me at my Vendor Fair on Saturday, “You know you won’t be able to walk eventually with MS and you will have to be in a wheelchair.” I was not upset with her because she too had MS and some other type of mental disability that she was coping with. I replied to her by saying “That is why we are having this event is so we can raise money to find a cure!” She got the biggest smile on her face and so did I. Last night after writing day six, I realized this is my main concern about what my MS can lead to. I can’t imagine not being able to use my legs and being confined to a wheelchair. Needless to say I cried and Reuben assured me that everything was going to be OK. I am still worried though. I want my son to be able to walk me down the aisle to escort me to my seat on my children’s wedding day. I want to be able to run around with my grandchildren; God willing, great grandchildren. I want to be able to dance with Reuben at my 75th wedding anniversary.
Today’s injection site is my right butt cheek. This spot doesn’t hurt much when the needle goes in, but it itches a lot after the medicine settles in. Just like in my leg and other butt cheek it will leave what feels like a hard ball where I did the injection and it will be tender for the next day.