What to do next?

Today is a beautiful day outside. I am hoping to be able to force myself on a walk. My muscles are weak and barely there, so I am going to have to make and effort. I wanted to go to church today, but still haven't gotten up the strength to go. I really miss being there, the singing, just being surrounded by others hearing a message of hope and redemption. Maybe next week will be better. I am doing a quick fill in since I seem to have some new symptoms. Yesterday, I had a rather painful day, not sure why, didn't really eat anything different. Then late last night I felt the middle part of my throat start to feel kind of fat and numb, almost like I had gotten a shot of Novocaine in throat. This is not a good feeling for my already anxious tendencies. I thought maybe it was just a big burp that was stuck, but it wasn't. I have also had some other things that are cause for concern, so we finally called on call. I hate doing that. I feel so bad. I have some friends of ours who are on call and I see how much those calls can mess up their day. But, we had to. After discussing the other issue, we brought up the throat thing. He is wondering if it might be the Domperidone. I guess it can be a side effect. Yay (stating very flatly). I am at a crossroads with this stuff. I don't even know if it is really working do to how low of a dose I am on, but I do know I am having more interactions than we had anticipated. I don't know if I want to continue with this stuff anymore. This stuff is bringing me anything but peace. I am frustrated to say the least. When talking with the office I have asked them if all this is normal for my moderate diagnosis. They just said I have a really hard diagnosis. Seth said the doctor actually said he felt so bad for me. I just don't understand why things are getting worse? Now with my tongue thing, I am finding it hard to speak. I know what I want to say, it's just that it's almost to hard to coordinate my tongue to speak. It happens at the most unexpected times. I can be talking just fine and then, it just goes out. I am trying hard to get health at least up and going, so I can be with people, but the symptoms keep on getting more and more difficult to deal with. Most get togethers revolve around food. I have started to make a list of things I can eat. Cream of mushroom soup in the blender, plain baked potato, yogurt (plain or vanilla, no fruit), reduced fat cottage cheese, water crackers, rice crispy treats, rotisserie chicken breast only, some luncheon meat, and pureed spinach quiche with everything reduced down and little pie crust. Today, I am actually going to go on the suggestion of baby food and try some of the stage one's and see how they do. That's about it right now. I used to be able to eat several other things, but lately haven't. Bread and I really don't get along and I still can't figure out why. On the positive side we are saving a ton of money by not going out to eat anymore. Most places don't reveal their fiber content and when they do, the fat and fiber are pretty high. I miss to ambiance, but I can't justify spending $10 for a piece of chicken and a baked potato when I can make it at home and not have to worry there is extra spices or something that might backfire. We have been doing the book of Esther for bible study this summer. The whole things seems to revolve around parties. Each party is accompanied with wine and of course, food. Beth even spoke about that G-d has given us the joy of being able to eat food. Alright, so I bring my own, no biggie, better than through a tube. Other issues, well, my friends are understanding enough that if I need to dismiss myself, it'll be okay. But not being able to speak? Okay, the two things I think of that I love to do is eat and speak. I keep on trying to tell myself, maybe it's like the bible times where G-d is making me be on hold to learn something, but what if it doesn't get better? I feel like I am in a drawing where I am slowly getting rubbed out. I am trying hard to grasp at any good learning tools like, I need to be quiet and listen more. I need to not be a glutton and not eat so much. I am finding myself still praising the Lord while crying out to Him for His mercy. I need mercy! I finally quit weighing myself because it just caused more anxiety. I know that I am still losing, but I just had to decided that seeing the numbers dwindle just aggravated things. I look out my window and see everyone going on by and I can't help but wonder, where do I fit in in all of this? How can I help anyone if I can barely leave the house for an appt? I watching my neighbor work in their yard and all I can think is, I want to too! Yesterday, we took a short walk halfway down our block, when I had to turn around. The kids started to get upset since they wanted to go around the whole block, I could barely do a tenth. Today I feel defeated. I am trying to focus on what I wrote a few days back, since I know it still rings true. For now though, I don't know what else to really do. I know everyone feels bad and they don't know what to do, I don't know what to do either. I want to get together with people, but then my system is so darn unpredictable which either leads me to cancel or to feel embarrassed. I have to get better, I just have to! My kids need me, I need to get out of here!! This is just has to get better, right? I need some hope, I need prayers, I need healing. I still believe. I still believe. I am down, but not out. I have many, many more years to live and this is just a bump in the road, it's just got to be. Anyways, I really need some prayers that I would get better and that healing and good days would start, today. I have so much to live for and I still believe that G-d is good. I really need some miracles. I am just not sure what to do next. If the Domperidone is done, I have the idea of an antibiotic to take, which I don't feel any peace with. Then there is botox which can be injected into the stomach but insurance does not cover it and you need to do it every 3 months and then eventually you max out and it won't work anymore. The only other alternatives are surgery for the pacemaker or the feeding tube. I don't want either. I am praying so hard for G-d to intervene and make this all go away. I know compared to cancer, ALS, tumors, so many other things, this all probably doesn't seem like anything to really complain about. The hard part is, how little options there are and what little resources there are to fix this. We asked about going to U of M and the doctor said he'd gladly give us a referral but that they wouldn't have any new things to suggest. So back to G-d for healing, even if the symptoms could just get better and I could gain some good healthy weight. Sure I'll miss the yummy food and still have cravings but at least I'd be alive and able to enjoy doing regular old things. With child like faith, all I can say is "Lord I need you, please help me get better. I want to live." Love, Kelly