I am not a village

I get frustrated when people use cliches to try and connect with me on some level. I know I make people uncomfortable but honestly, the cliches accomplish that for both of us. When someone is confronted by me while I am having an obvious MS flare(limping, useless dangling arm, scooting along behind a walker, wearing an eyepatch, wearing depends) I often hear one of the following cliches from obviously uncomfortable people thinking of something comforting to say to the gimpy, lame, half blind, girl who really just needs to go pee;
"you are more than your disease" I am? Oh what a relief, I was about to have a slow moving vehicle sign permanently tattooed you know where.
"You will beat this, you are so strong" I feel so sorry for the not so strong MS patient over there, she will never have a chance to cure this incurable disease like me.
" God knew you could handle this, that is why he gave it to you" I have seriously got to stop volunteering for incurable chronic illnesses. "

Now, I am not so cynical to actually respond the way I am thinking but I would like to use a few cliches of my own. I am not more than my disease, sometimes I am swimming upstream in a creek without paddle. Sometimes, my disease is more than me, sometimes I need a lot of help from people who are smarter than me like doctors and people, who at the time are stronger than me, like my family and friends. It takes an army of people at times to be stronger than my diseases.

I will not beat this(emphasis on the I). My diseases are incurable. That is a huge horrible word but one that I must nonetheless accept and understand. I am not weak by accepting this word, I know that saying MS or diabetes is anything but incurable is like putting lipstick on a pig. I can live with it gracefully but the bottom line is, graceful or not, I have to live with it.

I don't think God gave me two diseases because I am special. I am special because I know him and know how to find comfort in the midst of my trials. I can make lemonade whith my lemons, but I am not special because I have so many and I would much rather have watermelon, or grapes, or even a nice apple.

Too many times we want people who are struggling to become superhuman and defy nature by overcoming the impossible all by themselves. You need friends and family and doctors and God to be strong. You are not more than this, you will not beat this by yourself and you most certainly did not earn this. I am not the village,but I thank God every day that I have one beside me.

Bad veins

I am going in for my Tysabri infusion today. I hate Tysabri days. For as long as I can remember, I have had"bad veins" or in other words,it's a pain in the ass to get an IV started on me. I have had hundreds of IVs and I can't tell you the number of times I have heard a nurse say, "wow your veins are small and deep, I'm going to have to go diving for them." Just what you want to hear as they shove the harpoon into your hand. My dear husband has veins that resemble garden hoses and has only had one, ONE IV in his entire life. You know, it was unfair enough to get two diseases that require a lot of vein poking but it is undeniably unfair that I have "bad veins" to go along with it, and I have warts on my hand. Tysabri makes it almost impossible for your immune system to fight the wart virus. AND, I have to take a steriod before the infusion because I am prone to experience the rare side effects and steriods elevate blood sugar levels which cause dehydration which in turn make finding those damn small deep veins all the more difficult. So today I am a small veined, dehydrated,warty, diabetic, with MS. Yea for me. I am really short too. Who designed me? Do I have a warranty, can I be refurbished?

I am chronic

chronic(kronic)
–adjective

1.	constant; habitual; inveterate: a chronic liar.

2.	continuing a long time or recurring frequently: a chronic state of civil war.

3.	having long had a disease, habit, weakness, or the like: a chronic invalid.

4. a long duration (opposed to acute)

I was diagnosed at age eight with type 1 diabetes. This is not your grandmother's diabetes. Type one is an auto immune disease that destroys the insulin producing cells of the pancreas. It is also called juvenile diabetes because it usually affects otherwise healthy juveniles. It has no cure, it is chronic. It cannot be cured, only controlled with diet and exercise, and daily insulin injections.

Fast forward 18 years. I was a new mother. My baby was eight months old. I was diagnosed with Multiple Sclerosis. Another chronic auto immune disease.

So many people use the cliche, " you are more than your diseases". I am, but a lot of what I am is because of my diseases. I have spent a lot of my life masking the fact that I live and have lived almost every day of my life with a chronic illness. It is exhausting to do that and has caused me a lot of worry and pain. So today I say, "I am chronic ". There is absolutely nothing wrong with that no matter how uncomfortable it makes someone else feel.