Doctor appointment
I see my GP today. Looking forward to it as she is very calming. My husband wants me to ask if "there is an orthotic" I can wear. He is worrying way too much about me. I have to learn to suffer a bit more silently, I believe. Apparently my fretting is contagious. Now that the fear has scaled down for me(although I live in fear of the breathing/chest problems happening again,) I can do better about not stressing him. He doesn't need to be aware of the daily struggles of this. Yesterday, he wanted me to start wearing an ID bracelet. I explained that since I do not think it will help as I do not have a treatment plan or a physician that will know how to treat me, he wants me to get an emergency treatment plan that he can give the doctors if I have to go to the emergency room. I tried explaining that my emergency plan is to avoid the hospital until seeing the specialist. Maybe I will type something up for him that he can have for comfort. He is not an "in your face worrier" but instead a silent stewer. When he says things, you know he has been stewing.
Replies
I have a med like thing I wear around my neck when I am out and not with my husband. There are too many complicating meds someone could give us and It isn\'t worth the risk. My husband was bit by a spider a couple weeks ago and I was scared to death. We thought he had that flesh eating disease.I was beginning to be thinking about which hospital should we go to incase I went into a crisis if he went into the hospital. I got a taste of how scary it can feel. After all the fear they have to go through the least we can do is meet any health request they have. Some days I begin to believe I would rather be me than him. Have a great day
Ann
Hi Debbie,
Boy do I understand. My husband goes from discussing camping on St. John\'s to worrying about having an ambu bag handy, each of which are equally ridiculous at this time. Like you I am waiting for a definitive treatment plan and unlike you, I haven\'t had any breathing difficulties as long as I don\'t do the kind of hiking we used to (and I want to) do. He didn\'t want me to drive an hour and a half down the road to get my glasses properly ordered and fit by a real optician, but wasn\'t distressed that I went to the ophthalmologist by myself and I ended up driving home with the worse double vision I have ever had (due to the drops they gave me to check my pressure). I had recently had dilation, so that was not the problem this time. So that will be the last time I do that alone. You might print out the ER portion of the Handbook for Professionals for him. That might give him something to have that would ease his mind, along with the name of your doctor and phone number. It is not a bad idea to have that and the medications to avoid part of that manual available for emergencies anyway. Then let him stew over the manual instead of orthotics and ambu bags. That might actually be helpful in the long run; although my plan like yours, is to stay OUT of the hospital. b.
Hi Debbie,
Boy do I understand. My husband goes from discussing camping on St. John\'s to worrying about having an ambu bag handy, each of which are equally ridiculous at this time. Like you I am waiting for a definitive treatment plan and unlike you, I haven\'t had any breathing difficulties as long as I don\'t do the kind of hiking we used to (and I want to) do. He didn\'t want me to drive an hour and a half down the road to get my glasses properly ordered and fit by a real optician, but wasn\'t distressed that I went to the ophthalmologist by myself and I ended up driving home with the worse double vision I have ever had (due to the drops they gave me to check my pressure). I had recently had dilation, so that was not the problem this time. So that will be the last time I do that alone. You might print out the ER portion of the Handbook for Professionals for him. That might give him something to have that would ease his mind, along with the name of your doctor and phone number. It is not a bad idea to have that and the medications to avoid part of that manual available for emergencies anyway. Then let him stew over the manual instead of orthotics and ambu bags. That might actually be helpful in the long run; although my plan like yours, is to stay OUT of the hospital. b.
Sorry about the \" each are\". Proofing, especially for grammar is hard on this thing. But was just going to add that the handbook is on the MGFA site, myasthenia.org. b.