The past few weeks have been good. My lumps/bumps are almost gone! The swelling has definitely let up and the pain is totally gone. I am still taking some Benadryl and making sure I “massage” the lumps. I also called the neuro today to see what the next course of action that needs to be done, but no word yet. Hopefully I will start a different medication and not stay on this one. I am just a little afraid of staying on it because of the reaction I had.
I started my volunteer work at the clinic last Wednesday! It just felt so good to get out and help people. I am now officially a volunteer nutritionist for diabetic patients. I only got to meet with 2 patients so far but it was very rewarding. We set up goals and expectations. I am dying to see what progress we have made so far. I say “we” because I am a firm believer of a team effort. Right now I am just trying to make a schedule so that my patients know I am always there at least once a week.
Today I went to my first MS self help group. What a great group of people! It feels good knowing when I talk about what I am going through at least one of them totally understands the pain/frustration.
The group was held at the local YMCA. When I first walked in I had to go to the front desk because I had not a clue where to go. I talked to the lady at the front desk and told her I was here for the MS group. She looked puzzled. So I went into detail of what the group was about. She then made her own judgment that I was there to “help” people with MS and then thanked me. I quote “those people need a lot of help, thank you for doing this.” Inside I was laughing, but I let her think whatever. She was trying to find the room and finally asked another woman where the meeting was. She introduced me as a nurse once and than a helper and finally I corrected her and said I have MS. God, if you could see the look on her face. Her mouth opened so wide and her eyes were about to bug out. The other lady said she would show me where the meeting was but she had to grab something real quick. The front desk lady said nothing, only stared. This is when I felt like I was on display at an exhibit or something. I am just used to people knowing so I never really had this reaction before but let me tell you it was very comical.
Of course the lady never stopped staring at me. I took a seat on the bench waiting for the other lady to come back. Finally front desk lady started with the questions. And it went a little like this:
Front Desk: “Are you really diagnosed with MS?”
Me: “Yes, two years ago I was.”
Front Desk: “Wow, I know a lady at my church that has that, she’s in a wheel chair. She says her muscles hurt her.”
Me: “Are you sure that you are not confusing this with MD, Muscular Dystrophy?”
Front Desk: “Pretty sure, anyways what medications are you on?”
Me: “I’ve been on a couple I am just trying to figure out what one works for me.”
And here it comes, the dreaded back handed complement that you take with a grain of salt:
Front Desk: “Well you look fantastic! Keep up the good work!”
Good work? Huh? I of course just thanked her and walked to the room. The reason I say back handed compliment is because on the outside we look “normal” but on the inside we feel like crap. Some of us don’t have canes, walkers, wheel chairs, or a sign that reads I HAVE MS. Some of us have silent fights that can only be felt and not seen. It would take a while to explain what it feels like but I don’t think you would get the full affect. I try not to think about the incurable part and focus on my daily activities. But I also have to keep in mind how would I handle being told someone has MS, who in my eyes looks like a very young and active woman. If I had no knowledge of the disease what would I say? What is politically correct? I can’t answer that question, but I can promise to keep educating people and being patient.
Thank god the other lady came back and took me to the group who accepted me with open arms and open hearts. We went through the normal, how were you diagnosed? and blah blah blah. Just skimming the surface of who we are and what we have. I have never met a group of people that just opened up so quickly. So I am thankful for them. I now have been invited to luncheons and dinners. I also was invited as a guest for free to try out their water aerobics class lol. It specializes in MS. I say what the hell! What do I have to lose? Try it and see if I like it. I know it sounds weird and funny but I am going to give it a try. I need to break down some barriers and really get to know myself. If this water thing works hell I will try it.lol
So what I would like to tell everyone is you never know what people are hiding. You never know what people go through on a day to day basis. Sometimes you can run into the store and walk by someone who has an incurable disease and NEVER know it (like me). It’s not until you let people in on your secret do they understand a little more. I am not too sure how people with MS look. I mean we don’t walk around with signs on. But one thing I know is that we need to educate more and judge less. Stop worrying so much on the daily struggle and really be thankful for what we have. I want to laugh more, and worry less. Stop at least once a day and actually see how incredibly lucky I am. Open your heart and stop worrying. Also, don’t be concerned with what people think and everything will soon fall into place.
With Love,
Amber
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