Thanksgiving
I am blessed and have much to be thankful for, but lately, I think I could fall under cranksgiving. Why am I not so nice sometimes and take this disease as it comes. I am trying.
The kids cancelled Grayson's pediatric opthalmologist appointment because insurance wouldn't cover it, so I don't know why his eye droops sometimes. Will learn to live with it. I gave it to God.
I have a PFT and then see the neuro following the pulmonary test (Tuesday afternoon,) and I am anticipating an admission for another 3 rounds of Plex. Means I will be in the hospital on T-day if that happens. This time I am well armed and will bring a packed bag and my bipap machine so I don't have to use hospitals antiquated one.
I made plans for kids to come on Sunday, December 1, for T-dinner. Just the kids and Bo's parents and Leo's parents. I'm not even certain that if I am in hospital that I will be home if they decide on 5 treatments. Meals being catered so no one should have to do too much. Last night, my brother-in-law called and his wife was all bent out of shape that we didn't invite them! We purposefully didn't invite people, because we don't know what will be going on or how I will be feeling. I just didn't need any more kids running around our little house besides my grands. Needless to say, we had to invite them. Now I need to adjust my attitude. So I'm venting a bit. EXCUSE ME! Couldn't you folks take care of my husband on the holiday instead of worrying about your "being ignored" days after the holiday? I am a little busy battling a stupid illness right now with weekly IV treatments and occasional hospitalizations 2.5 hours away from home, not to mention increased immune suppression.
Okay, now I have to turn back to Pollyanna. Sorry for the grumpies guys. I think its the weekly IV solumederol. Yeah, that's it. Couldn't be that sometimes I'm just a needy PITA, could it?
The kids cancelled Grayson's pediatric opthalmologist appointment because insurance wouldn't cover it, so I don't know why his eye droops sometimes. Will learn to live with it. I gave it to God.
I have a PFT and then see the neuro following the pulmonary test (Tuesday afternoon,) and I am anticipating an admission for another 3 rounds of Plex. Means I will be in the hospital on T-day if that happens. This time I am well armed and will bring a packed bag and my bipap machine so I don't have to use hospitals antiquated one.
I made plans for kids to come on Sunday, December 1, for T-dinner. Just the kids and Bo's parents and Leo's parents. I'm not even certain that if I am in hospital that I will be home if they decide on 5 treatments. Meals being catered so no one should have to do too much. Last night, my brother-in-law called and his wife was all bent out of shape that we didn't invite them! We purposefully didn't invite people, because we don't know what will be going on or how I will be feeling. I just didn't need any more kids running around our little house besides my grands. Needless to say, we had to invite them. Now I need to adjust my attitude. So I'm venting a bit. EXCUSE ME! Couldn't you folks take care of my husband on the holiday instead of worrying about your "being ignored" days after the holiday? I am a little busy battling a stupid illness right now with weekly IV treatments and occasional hospitalizations 2.5 hours away from home, not to mention increased immune suppression.
Okay, now I have to turn back to Pollyanna. Sorry for the grumpies guys. I think its the weekly IV solumederol. Yeah, that's it. Couldn't be that sometimes I'm just a needy PITA, could it?
Replies
I get it.
I REALLY get it!
I\'ve given my attitude over to itself. I can be explosive, loving, and tearful all in a single day. So be it. Those who understand, stand by us no matter what.
Be kind to yourself Debbie first and foremost.
Many hugs,
Larissa
Debbie, I\'m reading and saying oh yes, yes, yes.... that\'s totally true... stupid disease that leaves you wondering from one day to the next. It\'s so amazaing that people don\'t get it. I\'m not sure what they don\'t get, but maybe they just are too into themselves.
anywhoo... i hope that if you have to be in the hospital on T-Day, it will becasue you are getting the wonderful Plasma nutrition you need :) I\'ve had to juggle my IVIG too... I\'m with you and thinking of you, my friend... be well :)
Sorry Debbie, about the canceled appointment. Of course there was disappointment as you hoped for some resolution with Grayson. I am glad you could give it to God as he/she will carry the burden. Faith is an awesome thing.
Then Thanksgiving got rearranged with a certain amount of unpredictability thrown in. You have laid the best plans possible for the circumstances and I applaud your ability to adapt. Planning a hospital visit and company for a holiday dinner isn\'t all that easy and I have been there and done that and know that to be true. I had a cousin call to say she was coming for a week-end between my coming back from Arizona surgery and going into the hospital for another. I felt like people must think I am wonder woman. I asked my husband what my cousin could be thinking and he said in fact she was not thinking at all! We actually had a good visit but for us it was the one week-end at home with my preparing for company and then rushing to prepare for surgery in another state.
Then someone calls you and whines. Good grief. Hugs to you for your grace under fire. I hope at some point they realize this was more about stamina and good sense then anything.
Take a deep breath and give yourself time to process it all and take care of you. Maybe letting your husband explain to brother-in-law what that was about might help. He should be the one to handle his relatives and their feelings and stick up for yours but I know these family problems can get kind of touchy. I too would hope that if all knew the circumstances someone else might be offering to host and let you rest and recover. What are they thinking? OH that right, they are not! Hugs, Marie