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List Epiphany


Ethyl17

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So, I was talking to Mary Beth this week. We were lamenting the fact that there never seems to be any "down" time. You get to a place where you are stocked up, house is clean and laundry done, meals put up and bam, another road block. She had a car issue trying to get a child back to College and another starting a new job. For me, the lists just never end.

 

I kept a notebook with me when Bruce first stroked, wrote everything down. And I stayed with him most of the time at the hospital - don't forget Mary Beth was with us for two weeks. When Bruce was transferred to the SNF, I would come home at night and sort through the notebook. I keep three lists: Immediate, Weekly and Long Term. From the Immediate I would have two or three "Criticals" that went to yellow post its and as things needed to be added, they went to any other color post it. I have been doing this for 4 1/2 years and it works for me. There are pads and pens at every phone, pad in my work schlepp, one in each car. Just the way that I can function. Drives Mary Beth crazy - LOL. Sometimes she hides the pads!

 

But it was funny because I was organizing tonight, trying to figure out how to get Bruce out with the warmer weather due this weekend, but rainy.

 

There are always follow ups. All of us know this. My new Health Insurance was approved as of January 1st. I sent the premium and I have yet to get any paperwork - another phone call. I have to schedule Mammo and Bone Scan for me, can't do that until I get the Insurance. I have to place an order to Lowe's on-line, but being computer-stupid, I have to have Bruce taken care of for an hour or so and that takes planning. I am still looking for a new snow-removal team, etc.

 

But then I am reading: order book Mary Beth recommended for Bruce, order Dog Pads for Mary Beth, thank you note for an unexpected Christmas gift, send an arrangement for the death of a friend out of state, reservations for my birthday.

 

That is when it hit me. I have not been able to think about these kinds of things in a very long time. I thought about the things I had to deal with, all the major issues: finances, house management, stroke management, Doctors, Therapies. And yes, they are simple and mostly fun, but what a hoot. To finally realize we have a life back. A place where we can finally interact with the community, consider others.

 

My absolute favorite is "buy socks. Who knew? Debbie

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I feel the same way. Finally, my life is not one terror after another, but we have a life again. We have the luxury of planning an outing or just enjoying the back porch. Not just struggling to survive. Life is good.

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Debbie, you do have the insurance, most companies have a place on their on-line site that you can click for a temporary card and print it out. I just got my official card yesterday in the mail, but no list of approved doctors or dentists yet. Again, I can get that online if I have to. I had a GYN appt this week and I called the insurance's 800 number and they gave me my policy number, that's all you really need. I ended up postponing but only due to the weather and car issues. The insurance companies are probably just backed up, even when we'd get a new company at work back in the day, the card didn't usually arrive on time. You're still covered, go ahead and get those appointments made!

 

I am the queen of lists, always have been, had to be in my job, and as they they taught me when I was in management, everything is A, B or C. A has to be done today, B will be done today if I get to it or else definitely tomorrow, and C can be put off indefinitely but will always be hanging on the list for when I get time. Today my list is go check out the new ALDIs that is having a grand opening nearby, then across the street to doctor to get a note excusing me from jury duty, then to the courthouse to drop it off and then....we will cash in my Applebees gift certificate (found it! I had clipped it the the 2014 calender because I knew I wouldn't use it until now) get a few takeout apps and go home for our (in)famous Happy Hour! A normal day, yay!

 

As we come up on three years (and two for the seizures), I am feeling like such a regular person. We went to Ray's psychiatrist last month, I think I already said this but he said he doesn't have to see him again for three months, instead of one. Then we went to the neurologist this week, and he said he doesn't have to see him again for six months, rather than two. I also told him we might be taking a trip by plane, and he told us it was a great idea, go and enjoy, it's time. He said it several times, just to be sure I heard him. It will be so great not to be going to one doctor or another every single week anymore. There is a light at the end of the tunnel!

 

There is a GREAT post on Facebook by Ray's rehab place (famous right now for being involved with the "brain dead" girl in California) it is 11 minutes long so won't post directly here. Let me see if I can link, because it sort of summed up everything we all went through on our journey to get where we are today. https://www.facebook...&type=2 The last three or four minutes are especially great, if you don't have time for the whole thing.

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I think that must be the key. In the beginning you are sooooo on the move with doctor appts, you don't have time to think. When they finally begin to space their appts apart, you have time to have a real life. The first year we went to therapy 5x a week, and were always going to doctors. This year, 2ce a week therapy and the doctors all have longer call backs. We finally have some downtime to just be people!

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It's the same for me. I took Larry to his PCP appt. and we don't have to go back until May. He said he could do his swallowing exercises at home. We have not been to therapy for several months and I use to go every week plus take Larry to exercise. The doctor seemed also concerned about me and asked if I had help. He said I was doing a good job of taking care of Larry. Caregivers can make sure our loved ones follow doctor's orders and take their meds, take them to appointments, etc. but we are the ones who keep them healthly 24/7. It is a relief when you finally get in the routine and things level out. I can't believe 4 years have gone by since Larry stroked in February 2010. Only one hospitalization since and hope things get better.

 

Julie

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