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!