Saturday, June 23, 2012

Telling the scary truth (finally) about why I can't get well

"Nothing heals us like letting people know our scariest parts: When people listen to you cry and lament, and look at you with love, it's like they are holding the baby of you." Anne Lamott

I've had two big medical trips since I've posted about anything health related. I know the details of these trips help you understand how challending our life is, and also the things I learn from the specialists prove helpful to those of you on a similar journey at different stages or without the access to the care I have received. It's difficult for me to explain, even after all these years of doing this, how much these trips and appointments take from me physically and emotionally and spiritually. They are just plain hard. Today I'm just going to write about what three specialists have not just recommended but prescribed for me or they believe I will continue to get sicker and sicker. (I will post about Danica's Cincinnati appointments in the next day or so with pictures, because I know you never tire of watching this amazing girl's brave journey.)

I've known for awhile now this basement where we live, in the lower level of my parent's home, is making me sick. I've really only been able to deal with one big health problem at a time and so I've pushed this to the back burner for two major surgeries and recoveries. Last summer when we moved in I was feeling okay. Yes, I had joint pain and fatigue and was completely worn out from nine months of full time care of Danica with her immobility and constant needs, but I rapidly went downhill over the first two months here. I was just finding out about EDS and Chiari and my instability. My symptoms snowballed to the point I could barely get out of bed. I associated these with my brain stem and spinal cord compression and connective tissue disorder. I did not consider that living here was adding layers of symptoms making it impossible for my body to heal.

I was diagnosed with a severe mold allergy in addition to other environmental allergies for the first time when Delaney was a baby. Dan and I lived in a new construction home in Rittman, Ohio. It was built on farm land and faced a gorgeous horse farm. I got sicker than I had ever been. One day I went out front to plant some bulbs. The wind was blowing the "right" way, and I was digging dirt and touching bulbs, and it became harder and harder to breathe. I fell down on the sidewalk just as I was slipping into blackness. This episode prompted the testing, allergy medication, an inhaler and realization that most likely it was not just the outdoor triggers but the new construction making me so ill. When we went to sell the house we also found very high radon levels there. (New construction homes are not required to have radon inspection paid for by the builder upon closing. If you ever buy one I highly suggest you ask for this in your contract or pay yourself to have it done, particularly if there is not a mitigation system in the basement or crawlspace.)

When you trace our history with homes you can see how I always felt better in the "older" houses we lived in and also those with hard wood floors. These were the periods when I was able to work, ramp back up my career and live the most pain free. These homes were also in established neighborhoods in more urban settings so my body was not dealing with the outdoor triggers of just developed farm land or the indoor triggers of new drywall, carpet, floor stain, etc. This is one of the things a good allergist will help you do. Before they get out a prescription pad they will ask the right questions and listen. I was lucky enough to see such a doctor in May. He confirmed what I knew in my heart to be true. Living in this beautiful lower level of a new construction home built on what was farm land could be perfectly healthy for some but for me it is a recipe for continuous sickness and decline. Add to this my other serious conditions, and it offers little hope for true healing.

When you say the word "mold" to people they think of Extreme Home Makeover kind of mold visibly growing on walls and ceilings. Truly, three quarters of this space we live in is like a cave. It is a recipe for mold spores to grow. I have such a severe sensitivity I can "smell" it all the time. Somedays it makes me feel bipolar. I smell it in ice cubes and water from my parent's fridge. I became so sick in the bathroom I reduced showering to once or twice a week. Dan keeps his clothes in an unfinished room in the house, and when he was near me I felt like he had mold on his clothes. Delaney's room has no window either and does not even have airconditioning or heating vents. It is so humid in there and always smells strange to me. Danica has the one bedroom with a half window. For some reason I felt the sickest in this room. Over the last weeks I have gotten so crazy about getting people to believe me I had Dan take the pipes in the bathroom and kitchen apart. They were caked with black mold. I also realized the downstairs plumbing is venting through a return air vent near the ceiling into Danica's room. Every night when I would go into her room and shut the doors to tuck her in my face would get burning hit and red and my POTS would flare. I had been telling Dan for months there was something in her room in particular making me sick. It doesn't matter that it's allowed by code or really only suppose to open and suck air in not leak stuff out. I know it's making me sick.

We have used an enzyme to try to get the black stuff in the pipes. My parents have offered their upstairs bedroom to Dan and I which would leave our girls and the dog down here with them. Quite frankly, Our family cannot be separated again. We just won't survive it. We have a routine. We have a joy that comes only when we are hiding away together. The stress of living with two other families here is already great anough without shuffling the cards. We've talked about getting a sleeper sofa and Dan and I sleeping out here in the room with two windows. We've talked about if we could somehow get rid of the carpet and put down hardwood. Every possible scenario seems to only be a stop gap that may not even work at all. Bottom line from all my doctors. YOU CANNOT LIVE IN A BASEMENT. If you remain there you WILL suffer permanent pulmonary and gastrointestinal damage. PERMANENT.

When we made the very painful decision to move here last June we had no idea about my Chiari, Ehlers Danlos, instability, etc. We thought this was a one year plan. I thought I would be working again, Danica would be in school, and we would be back in our own home. If you are a regular reader you know I have wrestled with God about living here more than even my own health issues. Dan and I feel completely defeated. Why would God put us in this impossible situation after providing for us and leading us like He has? We literally do not see a way to move out. Even if we found a one bedroom apartment we could eek to afford the environment would likely be as bad if not worse than here. I cannot live next to a smoker. I cannot have old carpet with mold and dust mites in it. We have to have Twixie. She is the only thing somedays that keeps Laney believing in life. She is like our child now. We could not suffer to lose her.

This is the truth about why I cannot get well. Friends, if you have ever prayed for us. If you have ever pleaded with God to show His faithfulness and mercy and undeserved merit to Dan and I and our sweet girls, would you please get on your knees and beg Him for a way of escape for us now?

I am broken. I am full of grief. I feel far from the God who I know without a doubt loves me and already has provided an answer. I should be praising Him today. Instead I am crying and praying and singing this . . . over and over and over.


Jesus looked at them and said, "With man this is impossible, but with God all things are possible." Matthew 19:26

1 comment:

  1. Monica, You and your family have been suffering and on high alert with big stuff, for so so long. I am so sorry and can only imagine how frightening this all must be for you all. I wish I was a millionaire/billionare aand I could help get you what you need for a good living environment. Maybe, sharing your life story and circulating it and someone being the chief coordinator of a long term fundraising effort, backed by some corporations, could help, and help you and Dan find a rental in an established development would help. Life is almost more tban you can bear alone right now. If you got some publicity about the major points of your ordeal first with Danica, with pictures illustrating what she's been thru, and how you faithfully cared for her as sick as you were, then discovered you had a milder form of the same brain malformation, the surgery you went thru, the separation from your family, and now this environmental reaction disorder that must feel like the most wicked slap across the face, so so much. I think counseling would be helpful, and maybe even get you some connectjons where you might find financial help somehow. DON'T give up hope. Pray even if you feel God is a million miles away. And meditate on the truths you have planted in your heart. Your family's life could make a motion picture movie! I feel certain, id a campaign were run for you, you all could get some extra help.....maybe enough for new living arrangements to get you out of the basement. God bless your parents for their willingness to help, and for offering you and Dan your bedroom. Maybe that could work, just for bedtime, for a short while, to you can make other arrangements? If the doctor said the basement and molds are seriously harmful to you, you have ro find a way out. Maybe a new website, dedicated toward fundrising? I should have sent this privately, but, now that I've written it I'm gonna send. If you prefer not to put it on your blog, I totally understand, but at least you have the note. Feel free to keep it private if you dont want all this rambling on your blog! I so badly want to help. Much love and care and orayers, Carol ps excuse typos!