Dear Colin,
Are you glad you got back north in time for the cold front and snow? Right!!!I I don't have endo but do have great pain from not only the rare,fatal (and dreaded by me) lung disease lymphangioleiomyomatosis (LAM) but from old assorted injuries to neck, back, spine, surgeries and having arthritis and severe asthma and no cartilage in my knees. Yes, I'm a mess but God's mess and He's got to help me take care of it. I'm hoping to attend the world wide LAM conference next week. The few scientists studying LAM hold a concurrent conference and then we get to meet with them (or them with us) so they can "put a face" on the disease.
I just finished reading the abstracts for the scientific presentations and am scared to death (or nearly) about the conference. If you want to look at general info is
http://www.thelamfoundation.org/LAM_Conferences.htm#professionals
Please pray for me and my family as we go to the conference. My attending will require me to
completely face that I do have this disease, that it is fatal and that I HAVE to deal with those issues. Sometimes I can tell myself I just need to worry about the daily pain I am in (and aren't there those times you feel you can't take the pain anymore and would/should be dead?) from all the other injuries and illnesses and then I realize something else is killing me and I should fight to stay alive. It's just another quandary God has presented to me and I sure can't handle it alone. I feel like the snake in the "having car trouble" pictures I sent you -- out of place and with my guts hanging everywhere! I have to remember God put me here in this place so I can't really be "out of place" and that He will help me get home in His own time. meanwhile I need Him just to handle the physical and emotional pain.
If you go to the conference site and click on abstracts and look on page 19 (out of 33 abstracts) it talks about the phsychosocial condition of lymphangioleiomyomatosis. it says essentially declining respiratory functions leading to respiratory failure and death leads to everyone with LAM changing their role sand expectations in life and leads to depression and anxiety. No kidding? Almost everyone I have communicated with who has LAM is on at least one or two anti-depressants and one or more anti-anxiety drugs - except for me. Why God has protected me so far (even though I fear sometimes I am loosing my grip) I don't know. However, I am very thankful and aware it is because of Him not because of something (other than Him acting) in me. Please pray I can hold out. Being in pain leads to enough depression just by virtue of the changes it causes in my life (as you certainly understand.) Knowing I am living with and may die from this gruesome disease is more than I can handle right now.
I hope this finds you and your family well and rested. It was a terrific idea to get away. The LAM conference is not going to be a fun "away" for Bob and I but may lead to additional closeness if we can both open ourselves to the learning opportunities present at the conference. (It will be one of the few times we even make it to the edge of town. We don't ravel at all.) Pray for Colyn too that she can deal with her health and anxieties until we return. I'm not sure what God has planned but I am open to the possibilities. Or rather, I'm trying to be open to the possibilities. Please pray I have some success.
I've got several other things to send you that you might enjoy. Take care and God bless. Breathe In Peace Kathy
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