Thank you so much for your responses, and I’m so sorry that I’m just getting around to acknowledging them. Work was very busy last week and I don’t get on the computer at home because I always have someone looking over my shoulder, mostly my two kiddos. We had a great weekend. My kids spent the night with friends so we had date night. We were out until midnight and then up with friends until 1:30. We haven’t done that in months.
Hjilindley, I hear you; fear of being alone. While your fears are somewhat different than mine, that is something I have struggled with as well. My husband had to work out of town for most of two weeks recently so it was just the girls and I. One of those nights I wasn’t sleeping well and the dogs started to bark. I could have sworn I saw someone going down the stairs of my back deck at about two in the morning. I even called the cops to check things out. I don’t admit this to anyone, but now I’m thinking it may have been a dog. It was frightening at the time but now I feel silly.
David (victor jara), we feel very fortunate that so far whatever this is seems to be progressing very slowly. He really has no limitations thank God. He has fallen a few times which we make excuses for and he drops things more than usual. Clearing his throat he calls allergies most of the time. We tried to clean fish last weekend. That was a fiasco! Catch and release from now on! We try to rationalize as much as we can, but in the back of our minds we fear these types of things are part of a disease process. We are now three weeks away from the muscle biopsy so we could get a call any day with the results.
Vzandt, we haven’t been home in long time and haven’t told his parents yet. We have been holding off until we know more. We feel bad about that but because we know his mom would want us to tell her. We just don’t want to worry her until we have more answers. Her cousin died of ALS. Her husband has mild dementia and she has her hands full with him. I don’t know if they would be able to tell just by looking. We usually go home in the fall and I’m sure we will talk to them then. The kids know something is wrong because of the Dr.’s visits and the biopsy but they are young and we just say that the Dr. doesn’t know what’s wrong yet. That seems to be enough for them now.
Casey (CGARS), I appreciate that you said “my wife and kids are living it”. In the beginning of whatever this is. My husband had a hard time accepting that he wasn’t the only one that this is affecting. Not so much our kids but I am living it too. It took some time for him to really get that. It took me completely loosing it after a little too much tequila for him to recognize that I am hurting too. After that he told several of our friends what was going on and ask them to be on call for me. I do try to be strong and tend to hold things in during a crisis.
Edward 5256, Good luck to you. Waiting sucks.
Thank you ottawa girl and WellsRuby. Some days all I need to know is that I’m not alone and I have support when I need it.
Jen (panquinjen), Thanks. We try to do some fun things but are somewhat limited by our budget. We bought a house just before we started realizing that something was really wrong. So we are still in a financial recovery period. We are looking at some bigger plans within the next year if the medical bills don’t eat us up. For now we are really enjoying the new house. We have a pool for the first time and it has been great this summer. We also love watching movies together at night in the basement. There is a pond nearby where we can fish and we have a new dog that is entertaining. I think my husband’s favorite thing about the house is the basket ball goal. I have been worried about the layout of our house. To get to the main level you must go up a flight of stairs. The garage leads to the basement and only has one small step. The basement is a good set up. It is finished, we have our entertainment center there, computer is there, it has a bedroom and a room set up for his music equipment. It even has a set of French glass doors so that it doesn’t feel like a cave. I worry that if this progress to the point that he can’t manipulate the stairs that he will feel confined and left out when we need to be upstairs. You can’t even get to the pool without going up stairs. Anyway that’s a worry that can wait for many tomorrows.
Again thanks your all of your kind words and support. This is going to be a great week!
