Ok so I come from a huge family. My mom has 2 brothers (who have passed on) and 4 sisters. My dad has 1 brother (who has passed on) and 3 sisters. Between my mom and my dads family I have 18 first cousins. All but 3 of my cousins live within an hour if not 1 mile from me. Almost 1/2 of my cousins (both sides) have gotten married and have had kids. In my daughters generation we have 22 kids (10 is the oldest), only 4 live out of state.
Just a little side note: We had 230 people at our wedding. 200 was family. Again only a handful had to fly in from out of state. The number of family members between my husband and I was split down the middle. Most live in CT and I love it.
The point in all that was I pretty much see at the least 1 family member everyday. Birthday parties, sacraments, nothing can be a small affair because there are so many of us.
I remember my uncle always toughening us up. If we cried because we slammed our hand he'd say "let me stomp on your foot. It'll take your mind off it." Or "shake it off" Being from a mother that (I really do love you mom!) coddled me, I needed that. When I got older I learned no matter how painful things got it was nothing because hey you are alive. People have it worse off than you.
That mentality came back to bite me in the ass after I was diagnosed with RA. I remember 2 years ago my husband had sat me down. Only a few people had known I was sick. I had made
immediate family members swear to secrecy. He told me I had to tell people. He said he loved me but the pain was making me a bitch. Members of my family had been approaching him asking him what was wrong. I was moody, snapping, just overall not happy and they could tell.
I was upset. I couldn't tell them. We were tough! My aunt survived breast cancer and never complained, my cousin survived brain aneurisms. My aunt, brain tumors. You get the picture. All of that is way worse than RA. I took me admitting I was sick as me complaining. Which is not looked highly upon in my family. I was wrong.
Even after I let the cat out of the bag I still acted tough to everyone except a select few. With everyone else...my disease never came up. Everyone has their own struggles why should mine stand out over theirs?
My IV meds are administered at the cancer center. I remember the first time I went there I looked around and thought "I don't belong here, these people are sick". A few weeks later I was sitting there with the needle in my arm and a newbie came in. I didn't stand out to her. To her I looked sick like everyone else. Then I realized I was, I was sick. Still that only brought me down for about 10 minutes because I thought "these people have cancer and are dying. I'm not dying. Compared to them I am fine." I never forgot that.
A few months ago I was going through a rough patch. And here is where people not understanding this disease can make them say stupid things. I had someone close to me taking their grief out on me. They said to me "you think your life is so bad well next time you are at the cancer center look around. Everyone has it worse than you!" I snapped! Sooooo not true! That cancer center SUCKS to go to. You either are sitting next to death (someone that is knocking on heavens door) or life (someone that has RA just like me and their medicine is working!) You know how hard it is to sit there and talk to someone for a few hours knowing they might not live until your next treatment. Or the other extreme. You sit next to someone and you get to hear for a few hours how they are able to run marathons, play tennis, walk up stairs.
A few weeks ago we had a first communion, my lovely goddaughter, and a baptism in one weekend. My knee swelled up twice the size and I couldn't put weight on it without stabbing pain. For the first time, in front of my family, I used my cane. I was embarrassed. I was not being "tough". Every chance I got I would put it behind me. I remember sitting in church dreading communion because I would have to walk up in front of everyone. It was a horrible feeling.
Last summer I stayed in doors most of the summer.
I was only able to stand 10-15 minutes, walk 20-30 before I had to sit. I would get so exhausted from the medicine and fighting the pain. If I was a little bit tired forget it. I had to stay home because by the time we got anywhere I was ready to come home.
Now to explain the title of this entry. This summer I decided to live. My cane. It comes everywhere. I use it all the time to lean on and I can last longer in a store. Still...what to do about all day fun trips. I mean I can hold my own in a mall with my cane for an hour but that's my limit. My doctor got me a wheelchair. I used it after I walked 1/2 mile at the RA walk. My sister pushed me so I could keep up and have a good time with my friends and family that came. I used it last weekend and was able to spend 6 hours at six flags. We had so much fun we bought season passes.
So here I am. I am no longer ashamed of my cane. I am going to sit tall in my wheelchair. By the way props to my friend Jaime for helping glue pink rhinestones to the spokes and glam it up diva style!
In 2 days I am going to Walt Disney World. You will see my cane, you will see the chair. They will not be cropped out of pictures any longer. I am willing to take any means necessary to enjoy life, have more energy, and do all those things to see a smile on my daughters face. World.....I'm comin out!! :-)
Monday, June 13, 2011
I'm comin out!
I have been married to my husband 13 years and we have a beautiful 11 year old daughter. I was diagnosed with RA 5 years ago. I am a Nationally Licensed Massage Therapist and a Nationally Certified Pharmacy Technician. My mission is to raise awareness and understanding of the general public and those suffering from RA by telling my story and sharing what I've learned in school. The information on this site should not be used in place of, but rather to compliment directives from your healthcare professional. ~last modified 10/25/2014