Coping
Patient and Caregiver Diaries
Patient Diary -- Bailey Rains
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Time
Time. What does one do with time? Especially one whose time may be limited? I know that all adages say make use of the time you have left, make sure that every minute counts, etc. But what do you do when you know you should be cleaning house, it's too hot to go outside, your family is busy, or you're on your own? I will not get addicted to the TV. I don't want to sleep all the time, although naps are wonderful. I guess I'm in a funk. I am so limited as to what I can do that I begin to lose sight of all the things that I can still do. I just have a case of the 'don't wanna's. I hope that I wake up tomorrow with an idea of something truly terrific that I can do. I mean, there's only so much internet shopping one can do!
Bitterness
Bitterness. I know that the purpose of this diary is to have a forum to say the things that you feel you have to in order to deal with this disease. Well, today it is just for venting. I'm hurt, angry, scared, vengeful, and apathetic. After watching me suffer for less than a year after diagnosis and 5 months on Flolan, my husband left me last spring. He 'couldn't handle it'. He had no interest in helping to learn to mix my Flolan, he wouldn't cook or clean, but the killer was that he wouldn't help take care of my kids. No, they are not his kids, but we'd been a family for 8 years. We separated with the hope that we would reconcile. I thought that once he learned what all it took to take care of a household he would change his ways. No such luck. Since he moved out, he's been living with his mother. She cooks for him, cleans up after him, washes his clothes, etc. Whenever I have to have a test or a procedure done and I tell him about it, he changes the subject. When I have something that needs doing around he house, he says he'll come over and do it but he never does. When I have an appt. with my PH doc, he doesn't want to know what was said. So yesterday I took the big step and filed for divorce. It's hard enough to fight this disease as it is, and I know it will be harder to fight alone. My main problem, of course, is who will take care of my kids if I have a crisis? I have a supportive family, but my Mom is not healthy enough to do it, and my sisters live very far away. Right now I'm just keeping my optimism that this will not happen, but I know that eventually plans will have to be made. On the emotional side, I miss having someone to care about me. To be concerned with how I'm feeling. To hold me when I hurt, am scared, or just for support. My on-line support group is dwindling slowly - 3 deaths lately. Damn, this shouldn't be happening.
Fall is coming!
Fall is coming! Fall is my favorite season. I love to watch the leaves turn, I love the cooler temps, I love the smell of fireplaces. I will be remodeling my home and have thought about putting in a fireplace, but I don't think that's advisable with PH. I will give it a week, until true October, then out will go my Halloween and Fall decorations. I have spiderweb lights and fall leaf arrangements for my front porch, and of course I will get some pumpkins! My son and I might do the 'haunted house' on the porch that we've been wanting to do for the last couple of years. At 11, he still does the trick-or-treating, but only on our street. Last year I couldn't go with him, this year I can!
I love the whole time period from October through December. I have always loved it, but now since I have PH, I plan to celebrate them to the most extreme. Last year I was fighting congestive heart failure during the fall, and in Nov. I had to go on Flolan, so the whole holiday season was 'off'. This year I plan to make up for it. I'm really excited about it. I guess I am different from most PHers in that they usually breathe the best in warm temps. I live on the Gulf Coast and the hot humid conditions really make it a struggle for me to breathe. When fall comes, I breathe better, can be outside more, and just generally feel better, more alive. Never will I take the changing of the season lightly! This is a cause for celebration!
It's four o'clock in the morning
It's four o'clock in the morning and I haven't been able to sleep all night. I'm having some problems with my psychiatrist re: sleeping medication, and until she decides what to do about it, I will probably remain sleepless. I lay there thinking of a million things I still need to do, should do, should have done, letters I should write, etc. I remember reading another's diary entry where she said something about the night being the darkest time. That is when all the thoughts you don't think during the daylight hours come out to haunt you. I worry. I plan. Then I get up in the morning exhausted. Well, tonight I decided that I wasn't going to just lay there. At least I would get something accomplished. I got caught up on email, and now am putting my thoughts down for posterity. I've tried warm milk and a cookie, and sitting here with a kitty wrapped around my feet, I am getting drowsy. Guess I'll take another stab at sleep. Nighty night.
what a wonderful week
Wow, what a wonderful week it's been! I love the 'up' times! The weather has been terrific, I'm fixing to quit work and file for disability, my health has been great, so I'm one very happy lady! My family is doing well and all are happy, so all is right in my little corner of the world. It's times like these that I really feel that normal life can be achieved. Yes, I have a catheter in my chest and carry a pump, but it's all so part of my routine that a 'normal' life is still there. I took my son to a birthday party yesterday, and I sat around and talked with the other mothers and it was all so perfectly 'everyday' that I had to smile. Who would ever think someone would wish for a 'normal life'? And what is normal? Just a state of being where life is do-able and some sort of routine can be established, I guess. In my younger days I tried everything to keep from being normal. Normal was boring and predictable. Now it's the goal. An amazing shift in perspective. Anyway, it's good and it's real, and I will take every day like this that I can get, and live it to the fullest. I'm just so happy and grateful for this 'up' time!
I've missed writing in my diary
I've missed writing in my diary. It's been a really busy week, tying up lose ends at work, before my last day Friday. Now I'm among the ranks of the unemployed. It sure feels great, too. I feel like the weight of the world has been lifted from my shoulders. Next week will come the disability application process, which I'm not looking forward to, but is the next step in my journey. My son and I went to Houston yesterday to see the "Cow Parade". That is where around 200 life-sized fiberglass cows are painted up in hilarious fashion and placed in random positions around the city. We came armed with map and camera, and ended up having a great time. The weather was cool and damp, and we had a great dinner, took in a horse-drawn buggy ride, and as the last cow we found was at the Houston zoo, we had to take a zoo train ride. I want to go back to see the Zoo, but that will have to wait until I get a scooter. All in all it was a great trip to the big city. I try so hard to make everything I do with my kids memorable, and when my son came to me before bedtime last night and thanked me for a wonderful day, I knew that we had another page in our memory book. That might be a wrong way to live a life, as if there were no tomorrow, but if there are lots of tomorrows, won't it be great to have so many special memories to look back on? I am happy and satisfied with that.
I have entered a new stage in my life
I have entered a new stage in my life. Not only am I newly single, but I'm 165 lbs. thinner, am among the ranks of the newly unemployed disabled, and today I cut all my long blonde hair off. I also returned my hair to it's natural color, a medium brown. Think Catherine Bell on JAG. (I only wish I had her body!) I look so different from the way I've looked for the last 15 years. But I also feel different. I feel more ready to face the challenges ahead. My life has changed, there is no reason why I can't adapt to that change and move on with my life. Yes, it's different than I had planned but oh well...
I find it hard to make plans for the future. Yes, I'm making Christmas plans, but when it comes down to next summer, the next fall foliage tour, etc. I just can't seem to grasp that far ahead. My sister and I want to do the Fall tour through New England next fall, since we missed it this year, and I'm all for it, but I can't help but wonder if I'll still be here then. I don't mean to be morbid. I can't talk to any one else about it. I pray about it, and I know that God has a plan for me that I will follow. Of course, even healthy people will not be here a year from now. I guess the main difference is that we PHers know that death could happen at any time, while healthy people think it will never happen. Personally I'm glad that I've had a wake-up call, as my life and my affairs were really in a mess. Now I've had time to straighten them both out. And I know to cherish every moment. This is a wonderful life that we've been given and too often people go through life without appreciating the beauty around us.
Hi Diary!
Hi Diary! This is my third try in two weeks at posting a diary entry. I really have been trying to update, and I have made some long entries, but for some reason, they are not showing up here. I don't think it's this diary, though. My computer is old and cranky, and I think it knows it's about to be replaced, so it's retaliating. :o)
Not really much new. I'm still feeling wonderful, enjoying being off of work, and still trying to do errands. I have volunteered to work at my church office one day a week, as they need someone with computer skills to help out and I don't want to lose mine. I got my test results from my last echo and they showed that my PAP has gone up from 85 to 103. I don't know why, as I increase my Flolan every two weeks, and I feel so good. I hope that at my next doctor visit in two weeks I am put on Bosentan. I've not been worrying about things. I don't think I'm being Pollyann-ish about it, it's just that I feel great and I'm going to take that good feeling and run with it for as long as I can. The monster is pushed very far back in the darkest corner of my mind, and I want it to stay there. I love my life, and I am truly happy.
Hi Diary...
Hi Diary... Yes, I know it's been a while. I've just been so busy. I'm still trying to take care of details, and paperwork, and I'm hoping that the light at the end of the tunnel is not a train. I went for my quarterly doctor visit last Thursday, and it kind of bummed me out a little. I've been feeling so good, I guess I thought I'd hear "Hey, you're getting better!" But the reality is that my pressure is up, I'm still having to increase my Flolan every two weeks, and I'm over the cusp of halfway of the journey. I've crossed the 50 ng line, and I'm still having to increase frequently, so evidently the Flolan is not going to be a long-term fix for me. However, I am still hoping to get on Bosentan when it's on the open market (January?), and that is my goal. Plus I've finally lost enough weight to go ahead with the transplant evaluation. {{{Shudders}}}
The good news: my divorce is final, and I escaped with my self intact! Talk about a LOAD off your shoulders.... I bought a new car. I bought a five year extended warranty on it. I plan to still be here for that five years! Ha!
Today was one of the kind of days
Today was one of the kind of days that you live for. After reading Amy's diary tonight, I think she hit the nail on the head when she gave thanks for a 'normal' day. Today I went to the beach. It was warm, but very breezy, and the people were scarce. It's been so long since I've been to the beach that I guess I forgot the power of the sea. The waves were thundering, the gulls were crying, the sun was warm, and all together it was a perfect package. I tried to eat a taco on the seawall, but the gulls wouldn't leave me alone. The beach looked so strange being so empty. I wanted to go down to it and look for seashells, but I was afraid if I did I wouldn't be able to make it back up the stairs. I went to a souvenir shop and got some stocking stuffers for family that are not lucky enough to live by the sea. It was a very energizing experience, and I plan to go back a lot more often. I had to thank God for getting my attention. It was a wonderful present, this day.
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