My illnesses began in 2005 with a diagnosis of scleritis which is an autoimmune disease of the eye. The disease attacks the white layer of the eye and eats away at it. I have been on three different medications for the scleritis. My first medication was an oral form of chemotherapy that made me extremely sick. Next they tried an IV medication that I couldn't take due to the fact that it made my heart race. Now, I am Cellcept and it has kept the disease at bay since 2006. My doctor for this disease is at Johns Hopkins Wilmer Eye Institute where they have a total department dedicated to autoimmune diseases of the eye.
Shortly after the diagnosis of scleritis, I began hurting in my shoulders, neck, hips, and legs. That is when I was diagnosed with fibromyalgia. It has been a long battle with this disease. It took three rheumatologists before I found the BEST doctor in the world at Vanderbilt Medical Center. I battle this disease daily with pain, fatigue, fibro fog, and many other symptoms.
My third diagnosis, migraines, had been occurring for over ten years but when the scleritis and fibromyalgia began the migraines began full steam ahead. Currently, I average 2-4 migraines a week and they can last anywhere from 2-14 days. You could say I am considered a frequent flyer at the emergency room. In the past two years, I have been over twenty times and was hospitalized for three days in 2008.
2008 brought another autoimmune disease into my life, Hoshimoto's disease. Hoshimoto's is a thyroid disease. My body is again attacking itself. I am on medication to keep my thyroid levels at a normal range but so far, it is too early to tell. This is a fairly new diagnosis for me and I am dealing with the symptoms as best I can.
Last year I turned thirty-three. My son is ten almost eleven and my daughter is nine. My children have suffered so much from my diseases. I am not the mommy I used to be. We can't make plans days in advance because I never know what the future may bring. The kids try to understand but it is difficult for them to truly understand how sick mommy is. They want the mommy who used to take them to the movies, Chuck-E-Cheese, the park, just about anywhere and acted as young as they did. That mommy could do anything. She was invincible. Now my children come home from school and usually the first words out of their mouths are "Mommy, are you sick today?" They know the signs of feeling well and feeling bad. If my hair is fixed and makeup on, they want to know where we are going because it is rare I am able to do this. I can't go to the grocery store, the pharmacy, school, anywhere I suppose.
For almost ten years, I worked at a bank. For seven of those years, I was a loan officer. When I began getting sick, my bosses were behind me 100%. As the years went on, I was accused of lying about being sick, accused of being sick but actually being at the mall just because my car was in the garage and a drive-by was done by bank officials and the house looked empty. It was in my favor that I was covered by the Family Medical Leave Act. Then in 2007, I missed one day over the allowance in the law and was put on thirty days suspension for my attendance record. By putting me on suspension, it guaranteed them I would not be eligible for FMLA in 2008. On December 17, 2007, one month after my suspension, I met with my bosses. My doctors' reports could not tell them I was better because of the one month suspension (which the bosses said was to help me get better, yeah right) so I was let go. I received disability from a private insurance company but that has just run out. Currently, I am appealing this decision and waiting to hear from my social security disability application. Things are getting very tough and the added stress of finances just causes all the illnesses to go full steam ahead.
I am very fortunate to have wonderful friends and family. Some go to the grocery store for me, hold my hand at the ER, even become Santa for my kids. My family worries about me and does not understand the full extent of my diseases and how debilitating they are. As I said in an earlier post, when you look good everyone thinks you are fine. Most of you know that is not the case.
Please pray for my family and my many diseases. Pray that the Lord will give me the strength to be a good mother, handle my diseases, and all that life has to throw at me.
Sorry the post is so long but I wanted to give a quick recap for my new readers.
Subscribe to:
Post Comments (Atom)
4 comments:
Michelle, I'm glad you posted this. What a crappy way to treat an employee! I don't know anything about SS benefits except that my cousin and my uncle finally had to get attorneys to deal with all that. They did get benefits (and the attorneys didn't charge anything upfront but took some percentage of back benefits I believe). My uncle ended up getting two years of benefits from when he first filed and was denied. It might be something to look into.
I know it's hard for the kids -- perhaps they could talk to a counselor at school? Sometimes it helps kids (and adults too) to talk to an objective third party. It's also good for mom :-)
You are so fortunate to have lots of family and friends to help out. We have just a few family near us and I've lost touch with friends I used to hang out with years ago because I don't go out and "hang out" anymore. All my really good friends are all online now :-) which is fine with me!!
Ok, Michelle, I think your post just gave me a good reason to get off my pity pot, LOL! My daughter is raised and recently married, so I don't have the stress of worrying that my illnesses are screwing up my kids' lives. My boss isn't what I'd call "user friendly," but being an employee of the State of California has saved my fanny more than once when I had to have surgeries to try and fix some of the problems. I'll retire at the end of this semester so that I can hang onto the health benefits.
My sister applied for and eventually received SSDI, but you need to know ahead of time that it is a long and drawn out process. My understanding that nearly everyone is turned down the first time they apply and that it can take one or two more tries before it finally goes through. My sister fought twice over the course of three years before receiving benefits. She doesn't get much in the way of money, but she does have government sponsored health care coverage. When you're sick and in need of treatment, tests, and medications, this is often as if not more important than the monetary benefit of SSDI.
Don't give up on it, just prepare yourself for a fight.
Hi Michelle, Just read your question to Prof S about having kids and using cane. I have three kids that were young when my illness started and around the ages of your kiddos when I started using a cane. If you think it might be helpful, I'd like to share my experience with you...you can email me. Sincerly, Kerry
My heart goes out to you Michelle, i just posted on my blog about the toll my fibromyalgia takes on my son and husband. it's hard not to feel guilty, but as my husband says it's a family disease...it's not anyone's fault it just is. Your kids will love you for who you are...even though they miss who you were, it will make them more sympathetic to those around them.
They too will learn a way to cope with your illnesses just as you do. Life isn't fair, but it sounds like you have a wonderful support system around to help the 3 of you.
Always remember the support system that is also here on the net for you. We have been where you are and understand your struggles...take good care of you!
Post a Comment