I have been thinking about writing for awhile but have not been sure how to put into words where we are as a family. I mean I probably could but it would be a novel and it would be listed under horror stories. Ok had to throw in my flare for the dramatic. Honestly most days it is just too hard to type. I fill my moments with schooling the kids, feeding the fam, and getting kids to their activities. This is it! I know...nuts. I barely get dishes or laundry done, and a shower, well I try. By the time Tim gets home I am ready for bed. If the kids do not have an activity, bed is where you will find me.
I am desperate to have some sort of life back. I want to have the energy to comb my hair after I get dressed. Or be able to find a shoe that will go on my very swollen feet. I would love to fix a real dinner for my fam, or have a family game night. We are trying to find some kind of normal in this yucky state. I look forward to laying with Aidan and reading together. I love to watch design shows with Brooke, and cooking shows with Aidan. Snuggling up with Chan and listening to him play on PBS Kids is comforting. Hearing my hubby do the dishes or feeding the kiddos makes me happy I chose him.
Right now there is not much that can be done for the pain I am in. I have a few things going on and nothing is an easy fix. We believe my Ehlers Danlos is acting up. All of my joints and surrounding areas have a horrible burning pain. The only thing I can relate it to is when your leg falls asleep and not the numb part but the burning part right before it wakes up. This is how my joints feel all the time. And my feet and hands are swollen and tight. It makes using them difficult. PT would probably help but right now we just can't afford it. My pain med helps a little. I also am dealing with a very weird headache. I am having an MRI next week to see what is going on. I have a terrible stabbing pain in the back of my neck that sometimes radiates up behind my ear. It is truly maddening to walk around with this pain all the time. You begin to forget things, and just the very job of holding your head up becomes too much. There is a pain med that I can get 10 times per month. Again the extra money is just not there, and I have to drive to the doc to get it. I know this might sound silly, but getting out of PJ's and driving across town would take a ton of extra energy. Beyond that the shot only helps for 12-24 hours.
I am going to see a pain specialist at the Cleveland Clinic after the new year. I also have an appointment with a Doc in Virginia in March. The Doc in NY is still advising for the brain surgery. I just am not sure if I should go this route. I worry the outcome when the outcome from my last surgery was not the greatest. Right now, little steps. It is hard when your body constantly fights against everything you are trying to do. It is also hard to find a balance when you are not sure if you should stay in your home. Our home is also fighting against me with endless stairs, mold, and never knowing what will need patched up next.
It is true you can find the up to every down. You can push through the storms and make it to the sunshine. I have learned though each storm makes our family a little more tired. It takes a few more pep talks to set us straight. And we need to hold to each other a little tighter. We are so blessed by friends who drop off dinner, friends who clean for us, friends who love on our kiddos, friends who keep our heat on, friends who help fill the cupboards, friends who buy us a special lunch, friends who let me take a nap, and friends who pray continually for us. When these blessings happen I am reminded that the next storm will come, and we are not alone as we push through it.
A blog dedicated to my daughter Brooke who has Chiari I Malformation
Wednesday, November 13, 2013
Sunday, November 3, 2013
My Story
Here is my story that was used at the CSF Dinner Dance for a Cure.
My name is Melinda and every day I fight to end Chiari. Not only for myself but for my 2 children. As a family we know how devastating Chiari is. There is not one day in my life that I do not feel the effects of it, and detest the very word. My story started a long time ago, but I was only recently diagnosed.
As a child I was always sick. I never felt good and my head always hurt. I can remember going to school and praying for the day to end. I hated school. The classrooms were hot and made me feel icky. My head ached, and I wanted to play but most days watched as my friends played. Learning to read was a challenge. I tried to explain how the words danced about on the page and made me sick, but everyone said my eyes were fine. I struggled but pushed onward. I remember many nights laying in our living room, the scratchy couch under my cheek, the cool darkness of the room, my mom chatting in the kitchen while washing dishes. I wanted desperately to get up, but I could not. I hated riding in the car. Some days were so bad when my mom even moved the car my eyes would shut and the tears would run down my cheeks.
As a teen I struggled with not being able to keep up with my friends. Getting sick at the worst moments like on trips with friends. I begged the doctors to help me. My mom took me to one specialist after another. I was finally diagnosed with Endometriosis and Migraines. None of the treatments really helped. I was still in pain. In college, my symptoms were awful! I was taking a full load at school and working 3 jobs. I never stopped. And my body felt it. I pushed through pain and kept going. At this point, I was done with docs. I figured I would just drink lots of caffeine, not sleep, and keep myself so busy that I would not dwell on how bad I hurt.
This worked for awhile until my body would just crash. Then I would take a week to recuperate and go right back to the craziness.
Then in my late 20's I felt pretty good. I had several years of health. I married and was pregnant with my first child. During the pregnancy I developed horrible headaches again, and kidney stones. After a 26 hour labor, my son was born. I felt ok for a few years, until I was pregnant again. While pregnant with my daughter the sickness and pain was horrible. I had kidney stones that blocked the exit of my kidney. I had to have a stent placed while pregnant. I was terrified. The stent helped and I made it through the last 2 months. After my daughter was born I had surgery to remove stones. My last pregnancy several years later also took a toll. I lost feeling in m right leg and dragged it for the last few months. Only 6 months after my son was born, my daughter underwent brain surgery. She needed to be lifted and carried. Then 6 months later she had spinal
surgery. Six months after this we moved, and this is when my body spiraled out of control. I could no longer ignore how much pain I was in. I needed answers. I had 3 kids who needed their mom.
I started researching my symptoms. I had many of the same symptoms my daughter had. I found a few docs I thought could help me. One was a spine surgeon and one was a geneticist. They both confirmed I had a Connective Tissue disorder called Ehlers Danlos Syndrome. The geneticist also diagnosed me with Postural Orthostatic Tachychardia Syndrome. I underwent surgery last September to fuse my c1-c2 vertebra. But the pain has not stopped. I saw my daughter's neurosurgeon in June of this year. He confirmed that I had Chiari I Malformation. He also felt I had flow issues because the base of my brain is so large at the opening of my skull. He recommended a decompression surgery on my brain. I am also on a waiting list to see a heart specialist about my POTS and possible Mast Cell diagnosis.
Every day is an uphill climb. I try to do the climb with grace and love. Even though I hurt every moment the pain varies. Some days I can push onward, others it is hard to even get out of bed. But as a mama and wife my job is never over. So for their sake I do not give up. I will keep looking for answers and a way to make it!
My name is Melinda and every day I fight to end Chiari. Not only for myself but for my 2 children. As a family we know how devastating Chiari is. There is not one day in my life that I do not feel the effects of it, and detest the very word. My story started a long time ago, but I was only recently diagnosed.
As a child I was always sick. I never felt good and my head always hurt. I can remember going to school and praying for the day to end. I hated school. The classrooms were hot and made me feel icky. My head ached, and I wanted to play but most days watched as my friends played. Learning to read was a challenge. I tried to explain how the words danced about on the page and made me sick, but everyone said my eyes were fine. I struggled but pushed onward. I remember many nights laying in our living room, the scratchy couch under my cheek, the cool darkness of the room, my mom chatting in the kitchen while washing dishes. I wanted desperately to get up, but I could not. I hated riding in the car. Some days were so bad when my mom even moved the car my eyes would shut and the tears would run down my cheeks.
As a teen I struggled with not being able to keep up with my friends. Getting sick at the worst moments like on trips with friends. I begged the doctors to help me. My mom took me to one specialist after another. I was finally diagnosed with Endometriosis and Migraines. None of the treatments really helped. I was still in pain. In college, my symptoms were awful! I was taking a full load at school and working 3 jobs. I never stopped. And my body felt it. I pushed through pain and kept going. At this point, I was done with docs. I figured I would just drink lots of caffeine, not sleep, and keep myself so busy that I would not dwell on how bad I hurt.
This worked for awhile until my body would just crash. Then I would take a week to recuperate and go right back to the craziness.
Then in my late 20's I felt pretty good. I had several years of health. I married and was pregnant with my first child. During the pregnancy I developed horrible headaches again, and kidney stones. After a 26 hour labor, my son was born. I felt ok for a few years, until I was pregnant again. While pregnant with my daughter the sickness and pain was horrible. I had kidney stones that blocked the exit of my kidney. I had to have a stent placed while pregnant. I was terrified. The stent helped and I made it through the last 2 months. After my daughter was born I had surgery to remove stones. My last pregnancy several years later also took a toll. I lost feeling in m right leg and dragged it for the last few months. Only 6 months after my son was born, my daughter underwent brain surgery. She needed to be lifted and carried. Then 6 months later she had spinal
surgery. Six months after this we moved, and this is when my body spiraled out of control. I could no longer ignore how much pain I was in. I needed answers. I had 3 kids who needed their mom.
I started researching my symptoms. I had many of the same symptoms my daughter had. I found a few docs I thought could help me. One was a spine surgeon and one was a geneticist. They both confirmed I had a Connective Tissue disorder called Ehlers Danlos Syndrome. The geneticist also diagnosed me with Postural Orthostatic Tachychardia Syndrome. I underwent surgery last September to fuse my c1-c2 vertebra. But the pain has not stopped. I saw my daughter's neurosurgeon in June of this year. He confirmed that I had Chiari I Malformation. He also felt I had flow issues because the base of my brain is so large at the opening of my skull. He recommended a decompression surgery on my brain. I am also on a waiting list to see a heart specialist about my POTS and possible Mast Cell diagnosis.
Every day is an uphill climb. I try to do the climb with grace and love. Even though I hurt every moment the pain varies. Some days I can push onward, others it is hard to even get out of bed. But as a mama and wife my job is never over. So for their sake I do not give up. I will keep looking for answers and a way to make it!
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