Wednesday, June 6, 2012
June 7. Tomorrow. I will have a panel of bloodwork drawn for my allergy specialist. I will have a lumbar/sacral MRI to take with me to my Dr. Henderson appointment Monday morning. I will have special Spectracell micronutrient bloodtesting done to explore my nutritional deficiencies and poor absorbtion in addition to other issues. I will attend a special event at Glenmoor Country Club hosted by The Canton Chapter of The Foundation for Community Betterment to say a few words about this amazing organization and all they have done to help our family and many other individuals and organizations and announce details for their annual fall fundraiser, Rocktoberfest.
June 10. Sunday. I will fly from Cleveland to Baltimore for my Monday appointment with my neurosurgeon to review my scan from tomorrow and also go over continuing pain and neurological issues. (Thank you to my dear brother-in-law and sister-in-law who are willing to pick me up and drive me around while there and host me in their home. Believe it or not even asking for this help from people who love me very much is so hard for me. Thank you to Dan for taking vacation days to be with our girls while I am gone.)
June 11. Monday. I will see Dr. Henderson in Lanham, MD at 9 am.
June 12. Tuesday. I will fly from Baltimore to Cleveland to come home.
June 14. Thursday. I will have an endoscopy under anesthesia.
June 21. Thursday. Danica will have some very uncomfortable and traumatic urological testing done in Cincinnati.
June 22. Friday. I will see Dr. Tinkle, my geneticist, for a follow-up in Cincinnati. We will discuss my joint pain and subluxing, need for some kind of splinting, beginning PT with the therapist he suggested in Cincy who would make a plan for a local PT who could really hurt me without knowledge of my disorder, conitnued waiting for cardiologist appointment with Dr. Grubbs in Toledo for my POTS and medications.
June 24. Monday. I will have a colonoscopy under anesthesia. My gastro symptoms are severe. I had a horrible attack tonight after eating. I become so sick and weak. I am still bleeding.
I don't have the energy to give all the information behind these many appointments. I can only tell you the month looms before me like a mountain I could never even dream to climb.
How can you help? I can't answer that. We have needs. Our family is hurting. Our marriage is barely alive. I am breaking. There is a toxicity here, like a hidden mold, growing and making it hard to breath. It doesn't have to be true to anyone else. It is my truth. My chest constricts and my face is bright red, and I run to the bathroom.
I try to make a list. I try to email or message you back and say, "Yes, I need you to come get my girls. I need you to get me groceries or make a meal or just pray with me." I can't. I am letting paperwork slip. I am not returning phone calls. I just can't manage all this anymore. I don't want my husband to sleep on the couch because it's more comfortable than our mattress, and it's not HERE, looking at me, his wife who is consumed by this ugliness. I don't want Delaney to have to beg to have a big sleepover and then take it back because she's still embarrassed she lives in her grandparent's basement and knows I will be too tired to make it fun or be the cool mom. I don't want to change another diaper on a girl who is going to be five and wants more than anything to just be able to make a poop in the potty and simply cannot. I want to be planning something . . . anything besides more trips to doctors and hospitals and no trips ever for relaxing or reconnecting.
Please pray for us. God has an amazing way of always meeting our needs in perfect timing and to bring Himself the glory. I'm expecting this. God has provided a second vehicle for us through far away friends. We have not been able to make it to Virginia to get this car since we found out about this gift before my last surgery. Please pray we would be able to accomplish this. Although many days I do not feel I should even be driving, having a vehicle to make it to appointments and pick up prescriptions, etc. would be so helpful. We literally did not have the money for me to visit my neurosurgeon this coming week, and God brought this money in the perfect time to get one of the last remaining seats on flights that worked and it also brought me assurance I need to have continued care for the pain I am experiencing. I didn't come this far to quit.
Making needs known is like a tight wire for me. I've seen God bless this, but it makes Dan and I very uncomfortable. We do believe we need a break from living here. Even a month in a suitable short-term rental with very few of our things but just our family and a different environment is something we are praying for. Because of our love, Twixie, this becomes even more of a challenge and seeming impossibility. Also, we have rarely left our girls with anyone besides my parents. For many reasons we feel what is probably an unecessary anxiety about leaving them. Dan and I have got to find some way to heal the hurt between us caused by the inevitable damage of so much stress for so long. I cannot imagine if this marriage became a casualty after fighting for our family and for one another for so long. We need to exhale and be with one another without my parents over us and my grandma and Anna Mae popping up and Danica's door leading right into ours. I know Dan feels like he has lost almost everything he loved about me. I am grieving this very same loss. We need prayer, and we need a vacation.
I'm crying now. This is a good thing. It means I'm alive. It means my heart is not as hard as it was a week ago.
What are you doing this June?
We will be Rejoicing in Hope. Patient in Tribulation. Constant in Prayer.
Posted by Monica Kaye at 11:17 PM