Here I am not able to sleep. I can hear the slight sound of rain on my window. I know the weather is why I hurt so much today. Aidan and Chan joined me today with headaches and body aches. I wish desperately for their sake we could find a cure...a better way to survive this. Over the past few weeks we have made some pretty big changes again. It seems like the more we try to live a "normal" life, the more we realize it is just not possible. That does not mean I quit fighting for it. I wake up every morning praying and clinging to the idea of health and feeling ok. I have steered clear of writing because most days I really struggle with what to even say. But I do find writing it out, seeing it in print helps me to work through it. Maybe it seems strange to some to have it all out there, but there is a part of me who believes I am supposed to be transparent. Those who know me know how awful I am at this. I love to hide behind the "Oh I am doing great" face. This is my place of honesty. I do not have to feel the guilt of not having it all together.
I am not really sure about the path we are on right now. I will say it has been difficult. Brooke thankfully is thriving in many ways. School, although a challenge, is going good. She has dealt with a few health issues. So far they seem to be related to diet. We cut gluten out and she is doing much better. She is seeing the allergy specialist I am seeing in February. For now she is swimming to continue to strengthen her neck. I am amazed every day by her fighting spirit and willingness to push through. Chandler has been struggling. He has been complaining of headaches even when he is in fun environments. He has an MRI scheduled for the end of December. He also is seeing a geneticist in December. When Brooke was diagnosed all those years ago, I never dreamed my whole family may one day share Chiari and have another Chronic illness like EDS. If I am being honest, dealing with one chronically ill child is difficult...dealing with 3 plus myself seems impossible. I know it is not but the scheduling of appointments alone is staggering. Add into that the learning challenges we also face and my days are full before I even blink.
Aidan is my kid I am most worried about. His headaches have become much worse. He tries to be a typical boy but pays for it later. A 2 hour play date with a friend one afternoon, lands him in bed the following day. School was not working as he was consistently missing. We are now home schooling. This adds a whole new layer of crazy to our life. With me working part time and also needing to be his teacher, plus staying on top of medical issues....I am beat. Many days I just tell the kids I need them to play quietly so I can rest. I push and push until my body just crashes. Sometimes in the midst of the crash I wonder how much longer. How much longer will my body allow me to treat it this way. Aidan has been adapting well to being home. Many days we just lay on the bed and read. He understands my pain and I understand his. He and I will both be seeing a new geneticist in December. We are hoping to be able to travel to NY in the spring to see our neurosurgeon. I worry about surgery for Aidan. His surgery will be more complicated than Brooke's was because of the EDS. I keep praying that swimming will strengthen his neck and head, letting us wait a little longer for surgery.
About 4 1/2 weeks ago I started on a pretty strict diet. I am doing all of this because of my severe reactions to medications, smells, and foods. My body has become so reactive to things in my environment it was becoming difficult to go places. There are certain stores I can't even go in because of smells. It is horrible torture to be around people who wear heavy cologne. And I so hate being rude and saying anything. My reactions though can be anywhere from a skin rash to headache to nausea and vomiting. Yes just from a smell. I am not a hypochondriac and it really is not helpful to be called that. Although the reactions to smells was annoying, my real concern was the reactions I was having to medication. I broke out in a rash from Zyrtec. Did you know you could have an allergy to allergy meds? Several of the meds I was taking on a regular basis caused reactions. My one doc office did not believe me. The nurse swore there was no way I was having a reaction to the med. I asked her if I could please send her a pic of my face. She called and apologized, telling me she had never heard of someone reacting to that med. Thankfully I found the brilliant allergy doc in Akron. He has been a huge blessing. At this point I must be very careful what meds I consume. There are only a couple of antibiotics I have not reacted to. So I researched and my brother researched. We came up with an elimination diet for me. It started with 2 weeks of only chicken, leafy greens, herbs, chicken broth, water, and a small bit of tea and coffee. Those 2 weeks were a bit nuts. I felt like I was hit by a bus. It was like 2 weeks of the flu. Slowly now I am adding in foods. But honestly if I slip up or get something I should not have...I know it. The one thing I know my body reacts crazy to is sugar. And yes I am sure many of you are wondering....no Dr Pepper. After not having it for over a month, I am really not missing it. The main thing that is so difficult is all my food must be made from scratch. I have to plan ahead if I am out. It is just one more thing I must be committed to. Even with this food change, I am still reacting to things. I still need to take one benadryl every morning and night. I also found out my Vitamin D was super low. It should be around 40 mine was 8. My one doc said it was the 2nd lowest he had ever seen. I am on pretty high dose of Vitamin D now. Just hoping my body will absorb it like it should.
I have no idea if any of this makes sense. I used to be able to put thoughts together. Now I feel like I ramble. Probably because in my brain that is exactly how it is....a rambling mess. I have been trying to give myself permission to just not do certain things. I try not to live by a list anymore. Because honestly the lists become so long and overwhelming they make me crazy. I try not to worry about cupboards being in a disarray or toilet paper not on the roll. I try not to be angry about our circumstances, or regret not being able to do certain things. I try not to be sad when I just can't do whatever. I desperately try to find joy where ever I can. But let me just say I am so thankful for those people in my life I can be completely real with. The ones who hear my heart of sorrow. The ones who do not judge me for decisions I make. And the ones who will listen even if they have no answers. Having people like that in your life make days like today bearable.