Sitting on the Fence

The last few weeks have been rough. Many have asked how they can help or specific prayer requests. Sometimes it is hard for me to figure out how to have others help. Not that I do not need it, or want it. I guess I have always done it, and so now trying to figure it out is really hard. We try to manage. Our family has become good at adjusting to this new life situation we are in. The Hubby keeps learning new ways to help me around the house. The kiddos are figuring out my "I can't move my body" look. Thankfully Brooke has been feeling good. She gets a few headaches here and there, but manageable. She is Chan's second mom and my comfort(she rubs my back and brushes my hair). Aidan has been struggling quite a bit. He has a headache most of the time, and his EDS is causing him pain. Lately he does not do well in stressful situations, and we are trying to help him cope with his pain. Chandler tries to be helpful by being my cuddle buddy. Sometimes I have to quietly remind him mama needs the bed to be very still. I then hear his sweet voice say, "Sorry mama, I sorry you don't feel well." He loves to stroke my face with his little hands. I try to treasure that but honestly sometimes I wish he would not touch me. I know terrible to wish your child would not touch you! But when every fiber is screaming, a little touch can be so harsh. Today my little man lit a candle for me at church. He saw his big sis do it for my friend who is sick. He said "I can't tell you who I light it for. It is a secret. I want to pray for you cause you hurt." Love all of them and their sweet hearts of kindness.

This post is going to be a here is where I am at post. Nothing fun or revealing. Just places I need prayer, and hopefully a bit of a testament on how people with my illnesses need more people in their corner. So I understand if you want to duck out now. Some illnesses you go to the doc, they find it, they treat it, and life goes on. Some illnesses need more aggressive treatments and of course you cling to the hope that in the end the treatment will work. With 4 of the conditions I have, there are few options. I had the c1-c2 fusion over a year ago. I am having severe pain in my neck from it. When Dr D did this surgery he told me the one screw is laying on my major artery in my spine. But he assured me he could remove it after the fusion took. So I thought this pain was temporary. A few months ago Dr D was brought up on federal charges. I have to be honest, at first I was a little annoyed he was not allowed to do his job! I mean he was the ONLY orthopedic surgeon who knew about EDS and helped EDS patients. A few weeks ago, Dr D decided to flee the country. Sadly he left many patients just hanging. There are many reasons why he had his licensed taken away, and I am not going into all these details here. The main thing for me...I am in pain and have no one to remove my screws. You may think I am exaggerating when I say no one...I am not. Possibly there is a neurosurgeon who can help...I will get to him in a minute. As for Ortho docs, most will not touch EDS patients and the ones who will have very little knowledge of what EDS is. This is a problem because they can do more damage than good. A good friend who had the same surgery as me needs her hardware out too. She saw a very good doc at a very well respected hospital. She was treated very poorly, and he gave her few options. These "other docs" just do not exist.

Moving on to my severe headaches. So my neck hurts every time I move my head. Some movements are not to bad, but some will literally make me feel faint. I get a searing hot pain throughout the back of my neck. It goes up behind my right ear and I feel like my ear drum is exploding. The headache that follows is a very intense pain from neck to back of skull to ear to forehead. There is nothing I can take to relieve this pain. If I get this headache, I must lay very still and wait. It becomes some of the worst hours of my life. I believe this is caused by the chiari and high pressure in my head. This is what Brooke's Neurosurgeon Dr B feels too. He recommends a decompression of my cerebellum. I agree to a point. My fear is the instability in my neck due to the EDS. I worry the decompression will cause more instability. I asked for a fusion of c1 to cranium at the same time. He recommends the decompression, then we can go back in and fuse. HHMMM well that would be 3 surgeries to that area. I would rather get it all done in 2. So this leads me to my other neurosurgeon option, Dr Henderson. He really is the last hope for most patients in my position. He is very good, but very busy and expensive. He is in Maryland so that means more travel. But after him...there is no one. Please hear me when I say this. I do not mean I will not go to anyone else, I truly mean no one else will see me, or has said they can't help me. My appointment with him is in March. I am holding my breath that he will combine removing my screws, doing a decompression, and a c1-cranium fusion all in one sweep. Or he will look at me and have another amazing solution.

I said earlier Aidan is having pain from his EDS. Poor guy I completely understand! I am not sure if it is all the weather systems this winter, but my EDS is flared up. It is quite odd for me to lay in bed, take a deep breath, and have my spine crack all the way down. I woke up this morning with my arm hanging out of socket, my poor shoulder. Aidan and I both see our geneticist in February, yes another trip to Cincy. I know he will be disappointed we have not started PT. Sigh. I will just have to inform him the money tree I planted has not grown yet. I do hope he will have some ideas on how to help Aidan manage his pain. Seeing your child suffer is horrible. But the big blessing here is our doc! I am so thankful to have Dr Neilson and his great knowledge on EDS.

Right now I am managing my POTS. I have had a few little episodes but as long as I keep my fluids up, salt up, and take my medication I do ok. On the other end though my Mast Cell is causing breathing issues and major flare ups. I believe this is due to the mold we have in our basement. We are in the process of figuring out how to move. The constant mold entering my system leaves me wide open for more attacks from smaller triggers like food and smells. I learned to be more in tune to my body this year. I found several triggers. One is the soap aisles in stores. I have to avoid them. Another is the Dollar Tree. Funny I know. But I have had 2 severe reactions while shopping in the store. I try to make all our own cleaning supplies but this becomes exhausting. In order to help keep these attacks low I really have to do this. Now enter in the doc who can help with POTS and Mast Cell. Dr Grubbs is in Toledo. He has done extensive research in both of these. He also works closely with my geneticist. But just to see him there is a year long waiting list to get a call to make an appointment which might take another 6m to a year. I am currently on the waiting list. I hear you say, "Oh come on Melinda...there must be another doc!" Umm no there is not. There is a local doc who works with POTS patients. I have heard he is good. But when I called his office they told me the first thing is a tilt table test. This is a torturous test for someone with POTS, but someone with Chiari and EDS too...live threatening. Thankfully I know this because the doc did not. My Neurosurgeon immediately said, no way! So I wait for Grubbs to call.

Honestly most days I see myself sitting on the fence. In front of me the beautiful field with open spaces and freedom. My children running and playing. On the other side I dare not to even look. I sit perched on the hard fence praying to fall into the meadow. The fence hurts so much, and I want off. Reality has showed me that I need to bring the blanket up on the fence though. I need to invite others to sit with me so I do not become lonely. I need to find ways to make the fence as comfortable as possible. Even if one of these docs has one answer that will make one little thing feel better it is HOPE. But may leave me still perched on the fence needing more help. Thank you for praying. I know reading this is possibly a turn-off. I know most may not want to hear about the complaints, "Just get up girl and move on!" Believe me I would if I could. That is why those who sit on the fence with me are so very dear!

When a Gift is More Than You Ever Expected....

Growing up, my mom and dad always reminded us Christmas is more. It is more than the gifts, food, and festivities. And I always looked forward to the moment on Christmas morning when Mom would find the little baby Jesus and place it in the Manger. As a kid it just meant there was now a baby in the manger and it was not weird that all the other statues were staring at nothing. But as I grew, it meant a completion. A completion of another year, a special time of celebration, and a plan starting. I could see the hope and expectation of what was ahead, around the corner. And this realization made Christmas more than the gifts under the tree.

Honestly the past few Christmas' have been really hard. Three years ago Brooke had her surgery and was waiting for her next one. Two years ago we were far from family and Tim lost his job. And last year, I had surgery and was in horrible pain. Financially all these years were hard too. We understood what the "true" meaning was. Our kids learned to be excited with golden books and little toys. They figured out it was more important to be together. Yet every Christmas I laid out plans in my mind for the next year. It would be better. I mean it had to be better, right? I even remember saying,"Well it can't get worse!" But it can, and normally it did. For 3 years, I kept begging God for this next year to be easier. And for 3 years my answer was no. Something in me kept asking though....holding out hope. Smiling through the heartache.

I do not always write or share the hardships we have faced. Part of it is probably pride. But part of it is my inner voice saying, "Suck it up you poor American girl! You have got it good compared to most of the world!" And I know this is true!! But that does not make the $5 bank account balance any less scary. It does not make deciding to have your daughter's cavity filled or groceries for the week easier. The reality is you either have or you do not. And most weeks I have to make crazy decisions and then live with that. It means when I go get my hair cut twice a year, I have guilt for days. It means when I buy healthy food I contemplate who is watching me and scolding me for over indulgence. Or if my Dr Pepper addiction costs our family more than it should. We kind of have a family joke about the revolving door in our home. We hold very loosely to possessions because when groceries, gas, or doctor bills need attention...I start selling off our stuff. The kids now think it is a game.

This Christmas approached like the last few. The added issue this year....I can barely grocery shop and have any strength leftover. How could I possibly deal with crowds and all that shopping? Just as it always does it all fell into place. Friends stepped in and shopped for me. Others gave us generous gift cards. One friend continues to show up with groceries for us. I received encouragement in notes and phone conversations. Aidan received his amazing Wishes Can Happen Wish that spilled over into Christmas gifts. An amazing church in the area adopted our fam and provided special things for the kiddos and our family. I was able to do a little online shopping and never leave the house for gift shopping! Thankfully I had enough strength to enjoy Christmas Eve at my parents. Christmas Day I was not feeling well, but I stayed home and was able to enjoy just being US. I was reminded over and over it is not the amount of gifts but the love.

I am continuing to pray for a more gentle year. I am continuing to hope for a small amount of peace and healing. One thing I do know is whatever the answer, we will figure it out. I am continually amazed by my husband and children...the way they adapt and take it all in stride. I am overwhelmed by the love of my parents, never stopping the care for their daughter. I am blessed by so many friends...friends I have known almost my whole life, and those I barely know outside of the internet. Some financially support us, some care for my babies, and many just send me so much love and encouragement. I wish I had the ability to thank everyone, one by one, with real words of gratitude. I am in awe at how many care for us year after year and continue to pray for us. A gift is so much more for us.....we have seen it in so many forms. Each form the gift takes in our life makes us realize how much we are loved, and it really does not matter if the answer is "yes" or "no".

A Girl and a Piano

Since I was little I have always loved music. I love the feeling music rises inside me. I have never been very particular. I like so many kinds of music. If you were to look through my very limited CD collection, you would probably think it belonged to several people. You can skip through to see classical, jazz, 80's rock, 90's rock, even some 70's in there, show tunes, christian, country, folk, and of course some hair bands. I always dreamed of playing music. As a young child, I tried several times. I first tried claranet in 4th grade. Sadly the band instructor asked me to stop. I then tried guitar, but struggled to even learn one song. In college, I again tried my hand at music. I took an Intro to Music class. My professor was a lovely lady who was so kind in telling me I had no rhythm. But she helped me to get through the class because she saw the love I had for the music. She even recommended I take World Music the following semester. I devoured this course, as it not only spoke to me through the music but the history and culture. If you have ever heard me sing, you know American Idol was never in my future. But that has never kept me from singing! I was a dancer, though, and some how I managed to excel at this. I never counted the beats as it did not make sense to me. So I came up with ways to memorize where the steps went to the sound of the music.

I always hoped one of my children would want to play an instrument. When Brooke asked to play piano, I might have squealed and jumped up and down a bit. I love to sit in her room and listen to her practice. She is so determined about it, and even the simplest songs make me smile. I am so proud of her and thankful I have music gracing the insides of our home. It gives warmth even from little 7 year old fingers. I was over the moon about her piano recital. See I am not a sports fan. I have learned to find joy in watching Aidan play. I am also amazed by what athletes can do, but long games have never been exciting to me. When Aidan gave up Irish dance and we found out Brooke could not dance, my heart sank a little. I grew up dancing and doing gymnastics. For me it was a part of daily life. Dance gave me joy and I so wanted Brooke to find something that would do the same for her.

Today I woke up in awful pain. These weather changes cause huge issues in my body. I try to put on the "I am fine face" but time is showing I am not. I can barely walk most days, and Hubby has picked up almost all of the household chores. Even the simplest things like lifting a cup, or writing a note is very painful. The pain meds do not work well, and I am not able to see the pain specialist until March. A trip out means at least one or two days down in bed. And when I say a trip out I mean the grocery. So I knew this morning even getting out of bed would be a struggle. I laid there trying to figure out what to do. I called Brooke in and told her I could not make it to the recital. Before I could even tell her I was proud of her big crocodile tears streamed down her face. My heart broke. I wiped those tears and pulled her into the bed next to me. We laid for a minute crying. Then I prayed....prayed for strength to just get to this recital. I knew going would mean I would have to be completely humbled. My hair had not been washed in days. I could not risk a shower or bath because they exhaust me. I had to pull the hair up and pray no one noticed. My clothes looked like I slept in them, and I knew I would have to use the cane. And once again my mama and papa would have to come to my rescue and drive us.

I try to be ok with my illness, to make light of a very bad situation. I try most days to find the silver lining. But sometimes I just get angry. Angry at all these illnesses taking time from my kids. Angry my kids suffer. Angry my hubby can't have hobbies and a life. Angry we will always be in medical debt. Angry that I am 36 and have to use a cane, and even with it walk very slow. Then someone prays for us...someone loves on us...someone reminds me life is still full of hope. I pushed aside pride and anger to be blessed by my daughter. She played beautiful...and no one cared her mama had ugly hair and a cane. To blessed even more her teacher's family showered us with love, and tells me I look beautiful. May seem silly but to quote a friend of mine...I was a "hot mess". Sitting there listening to all those kids play beautiful Christmas music was wonderful. To hear a 14 year old sing music which literally made me cry was a little Christmas gift. For me music is beauty and life. Many crave words, or art. For me music can make me feel closer to heaven than anything else. Once again my sweet bug helped me be hopeful. She held my hand, smiled, kissed me, and shared her heart.

Another Wish Come True

This is a long overdue post! I have not been doing so great health wise. Typing, reading, and writing are pretty painful these days. But something pretty awesome happened for Aidan and I need to share! Our sweet boy had Christmas come early this year. I was asked by a friend if Aidan could be nominated for a wish through Wishes can Happen. At first I was very hesitant. Although he does have Chiari and EDS I felt strange having 2 wishes for our family.(even if for different kiddos) Then I was contacted by the amazing Madelyn Sweeney. She assured me Aidan would be getting a wish no matter how I felt about it. :) She of course thought big as all wish dreamers do. Sadly though I needed to stay close to home. I just could not travel right now. Our awesome friend Lisa, who planned Brooke's wish, took the lead for Aidan's wish. She was so kind and knew I could not do much in helping her. Lisa just asked for a few ideas. Of course my little wish list for Aidan was blown up times 100! Wishes can Happen can't do anything small! A few weeks ago, Aidan began to receive special packages. It was a fun week of opening boxes not sure what would be inside. He loved every moment! Now me being the mama wanted to make sure he got something he truly needed. :) So I asked for a nice comfy mattress and pillow. I knew this would help with his sleeping and EDS. He was actually looked forward to the comfy bed. Tim and I also decided to pull a few things out for Christmas. He was receiving so many awesome things, and did not figure it would hurt to hold back a few. I will post pictures of what he has received. After Christmas I will post some updates! Aidan has not only been a trooper through his sister's illness and surgeries, but mine too. He is in pain sometimes and does not even complain. Aidan is a gentle heart wrapped up in a responsible little man. I love watching him grow, and am sad when his pain gets in the way of regular boy activities. He does not complain, just takes it all in stride. God has blessed us with him and I am so thankful that he was granted this Wish! Thank you so much Wishes Can Happen!!! We love you guys so much! You have provided endless smiles. Here are just a few of the awesome things he received: Mattress and pillow, Alienware Laptop, 2 basketballs and a hoop, Jabba Lego set (He opened this and I did not see him until it was complete!), 2 Minecraft Lego sets, Bow and Arrow set,

Pushing through the Storm

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.

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!

Aidan's Story

Here you go....Aidan's story from the CSF Dinner Dance for a Cure.  I am so proud of my little man!  He really does amaze me with his compassion and love for the world around him.  In Aidan's words, "I reckon this outta be a good post!"

Aidan has had headaches most of his life.  We always blamed them on sinus issues.  Then as he was a little older his doc suggested he had migraines.  We treated him for migraines but his headaches still came.  He was having headaches almost every day.  He was irritable, had trouble sleeping, and just felt yucky most of the time.  Since his sister had been diagnosed with Chiari, we had him tested.  Right away the doc said no Chiari just low-lying tonsils.

I sent his MRI to my daughter's neurosurgeon.  He wanted to see Aidan.  We made the trip to see this doc.  He felt that Aidan had a Chiari Variant.  Basically that meant he had Chiari just at a smaller herniation than a typical chiari.  But Aidan also had a retroflexed odontoid, and very tight space where the herniation and brain stem met.  The doc could see why Aidan was having
the headaches.  He also felt surgery was not a good idea at this time.  Aidan has very bad instability.  So when he has surgery, he will not only require a decompression of the cerebellar tonsils but also a fusion.  It is better to wait for a fusion until a child is older.  This helps with healing.

Aidan was also diagnosed with Ehlers Danlos Syndrome.  This is a connective tissue disorder making the tissue around joints very stretchy.  Aidan deals with pain and dislocations in his joints. EDS also contributes to Aidan needing a fusion with his decompression. He needs PT and OT to help him deal with the EDS.  Simple tasks like writing and holding a fork are very hard for him.

Aidan is a nine year old growing boy.  To see him you would think his body functioned normal.  Sadly Aidan spends many days in pain. He battles frequent headaches, joint pain, subluxations, and dislocations. A simple rough and tumble boy time can leave Aidan in pain.  He is careful with how he plays, and what activities he participates in. Aidan is dreaming of a time when there is a cure for Chiari and EDS!

** A special thanks to Colleen Shawk at {we love your love} photography