I am 49 years old. I am an R.N. who worked for years as Director of Nursing in a local nursing home here in Texas. I was diagnosed with PH secondary to sleep apnea with R CHF in June 2001 I am married (31 years) with 4 "grown" children, 4 grandchildren and a little black long-haired chihuahua named "BooBoo." Started working part-time in December 2000. "Retired" in March 2002.

Today is a Wonderfully peaceful and calm day.  I feel relieved and reassured after talking to my husband in depth about my concerns for him, my kids, my grandkids, my BooBoo whenever I'm no longer able to worry about them.  It's been really hard to talk to him, because he likes to change the subject on me.  My youngest son really listens.  He has Asperger's and takes every single word I say literally, and so I have to explain to him in more depth some of my more emotional phrases.  I really enjoy talking to my youngest two boys.  They are really interesting people.   I guess what brought all these feelings up is Stress about my April 15 deadline for my taxes (which I didn't make) but now it's past so I'm not feeling any more stress about that and it's coming closer to the "average person lives about 3 years after diagnosis of your stage of PH with RCHF" which will be this June for me.  I know I'm nowhere near that point and feel my symptoms are much more controlled now than they were 3 years ago.  I realize I'm now on continuous oxygen and don't get out nearly as often as I did, but I feel better most of the time than I did then and I never was an "average person" afterall.  My husband is finishing the balconey outside my bedroom (which he started about 10 years ago).  He's making a lot of progress and thinks I can start using it in within this next week.  BooBoo is really excited as he seldom gets to go outside either. 

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I feel so pleased with myself this week.  I've had two visits from one of my sisters, two from my daughter and still managed to clean up part of my room.  I went to Wal-mart and have plans to go again tomorrow with my youngest son.  My sister brought me all her pictures (to scan and put on a CD for her) and promises to buy me some ink and photo paper to make her some copies.  She said she wants me to help her learn to do scrapbooking.  She is planning her youngest daughter's wedding and helping raise her other daughter's 3 year old daughter so she's feeling a little overwhelmed right now, but still cheerful.  I have had incredibly good spirits all week.  Have plans  for all weekend.  More motivated to stick with my diet and extra support from PH diet group has been wonderful.  BooBoo hates to see me put my shoes on, he knows I'm taking off somewhere without him.  His Daddy takes him for rides sometimes when he's not going to be going into a store, but I can't risk leaving him in the car for fear he'll get too hot or stolen.  Must get some sleep now, I've been up since 7:15am today.

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Have been really exhausted today.  Was super hyper yesterday and couldn't figure out why. Couldn't sleep.  Felt nervous.  Found out this morning I had taken an extra days worth of my AM medication.  This is the 2nd time I've done that. Kind of scary.  I fill up all the little boxes once a week, usually Saturday night or Sunday morning.  Then one day last week I missed my am dose and didn't realize it until the next day, so moved it to Sunday AM's spot thinking I would take them Sunday.  Ended up taking it twice yesterday, not remembering my plan and so I had 3 tabs of 80mg of Lasix Saturday and 3 doses of potassium and an extra dose of altace and synthroid, vitamin C, gout medicine, diabeta and whatever else it is I usually take every am.  Constantly in the bathroom, lots of muscle cramps and didn't have enough sense to realize what I had done until this morning when I was setting up my meds for the week.  Have got to be more carefull.  Have tried to diet this week and hope I have done well, will find out in the am.  Plan to start being more consistent in an exercise program, starting tomorrow. 

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It was another beautiful Spring day.  My balcony is almost finished.  I can sit outside now, although it's not screened in yet.  I'm so excited.  It really helps my depression when I get sunlight.  BooBoo is excited, too.  He's looking forward to playing out there everyday.  I'm sure the grandkids will have a blast this summer, I know I'll be keeping them for awhile anyway.  I'm trying to decrease watching the news, too many bad things going on everywhere now.  I have plenty of projects I need to work on.  Made it to church this past Sunday.  Didn't feel real well, so came home early.  O2 sats running mid-80's at rest, hadn't checked them in some time.  Increased O2 to 2.5 and went back up to 90-93 so will try that rate for a few days.  Felt better after I turned it up.  Got some new parts for my bipap machine, should work better.  Slept good Saturday and Sunday night.  Layed down tonight for awhile, but couldn't sleep so got back up.  Husband snoring in his recliner.  BooBoo sound asleep in my bed.  Feel at peace lately.  Not going to worry about things I cannot change or help anymore.  Going to keep trying to lose weight. Know it has already helped me feel better.  Need to work on my advance directives, have looked at them several times over past years, but never completed them.  Have collected everything I need to figure my taxes out, so must quit procrastinating there and get it over with.  Could use the refund, I know. 

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I have completed my advance directives, need to get them signed and witnessed and my will notorized. Now I have quit putting it off I feel satisfaction.  I am trying to stick with my diet, feel weak the past few days, but have had an infected big toe, due to ingrown and am on antibiotics.  Will probably get my lab results tomorrow.  It's my first glycohemoglobin since I got started on insulin in January.  Doctor wants me to start going to podiatrist regularly so must see if the one he referred me to is on my insurance.  Shortness of breath better since my oxygen was upped to 2.5 l/m.  Hadn't checked my oxygen sats in months, don't know why I don't use that expensive machine more regularly.  The batteries had run down and I kept forgetting to replace it. My sats were running 79-83 on 2 liters, but 93-94 when upped to 2.5.  Remarkable difference in shortness of breath, energy and general feeling of well-being.  Haven't scrapbooked in awhile.  Got burned out at Christmas making memory albums for so many siblings, nieces, nephews and mom.  Have done a little genealogy work this past week.  That's about it.  Have missed church last week, hurt to walk.  Will make it Sunday I know.  Really helps me to take the sacrament and see my friends and study the gospel.  The more I read my scriptures, the more I see that seems new to me or like it is meant for me.  It's amazing.  Due to poor concentration, I can't read or study too long, but if  I just try I know I can improve my good habits. These are my new goals, exercise every day, even if only 5 minutes and record on phdiet at least one week.  Read my scriptures every day, even if only 5 minutes.  Keep track of my diet and record on phdiet at least one week.  My husband says the grandkids are going to visit tomorrow. My daughter wanted me to watch the 3 year old Monday and I said no, due to I absolutely cannot chase after him, but if my 9 & 10 and almost 7 year old ones are with him, they help me chase them. They can even go out on my balcony now. It's finished except for the screens so I know they will enjoy it.  Onward onward to better habits and behaviors.

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Haven't written in some time. Have been babysitting 4 grandkids most of summer with much help from oldest two grandaughters (nearly 10 and nearly 11). School will start the 16th and I'm getting as excited as the kids about that rapidly approaching date.  Health has varied during summer months.  Pretty sick past 10 days or so, but feel much better today.  Have been in the PH Diet "club" and have lost around 30# since February (348# yesterday).  Really has improved my mobility and hygiene problems.  Hope to continue to get inspired and with their help and Heavenly Father's will lose more and more.  Have made it to church about 50% of time this summer which is much better than last summer.  Have completed some projects and continue working on others.  Emotional status has much variation. Some days very up and some days very down.  Seem to cycle (menopause?) or normal part of disease process.  Will be on medicare in September, which may be better as far as medical expenses, but worse as far as Prescription benefits.  Will have to wait and see if any better off financially.  Plan to go to Florida mid August, if all goes well.  Boo Boo is fine, easily exhausted after playing with little ones all day.  Has nipped at 3 year old several times this week.  His pediatrician has referred him to neurologist for evaluation of possible autism.  Hopefully can get in to see one soon. 

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Hope

Past three days I have been able to read in some of my books and in my scriptures, too. This is really great as I have had difficulty most of the past 4 years.  I have also been researching for the right "medicare drug card" for me with my 13 medications I take daily.  What a project that is turning out to be.  I start on Medicare on September 1, hopefully will help some in the financial area of my life.  Want to continue to be able to read, especially my scriptures to help in the spiritual area of my life.  Have made an effort to increase my prayers to at least daily as have not been consistent in that area and I know my ability to concentrate while reading is a direct result of that.  What a wonderful gift.  I was an avid reader since age 5 and always read a book or at least a half a book daily all my life until 2000 when I found I was unable to concentrate and had to reread every page over and over just to understand what was going on.  I have actually been able to read 5 chapters a day in my scriptures and 1 chapter in another book every day the past three days.  I am going to start a novel my sister brought me today.  Haven't read one in years.  Couldn't do it yesterday as kids were rowdy.  Went to bed at 7:30 last night and slept until 4:00 this morning.  The sleep pattern is improving too.  How great is the power of prayer! My Heavenly Father does love us all and will and does help.  My Dearest friend has put me on a prayer list and I have specifically been asking for help in certain areas instead of a general prayer for help.  I have been much happier past few days.  Better able to tolerate the 4 grandkids and their antics, too.  Want them to remember me as something more than a grouchie old grandmother.  They are really precious gifts to me and I don't mean to get onto them for every little thing.  They have been as good as can be expected locked up in my room with me most of every day this summer.  The grandaughter that is soon to be 11 loves to play dolls (her two little brothers love to try to get her things and run off with them).  The grandaughter that is nearly 10 loves to play on the computer and turn flips and stand on her head (her two brothers love to aggravate her when they can, too).  The oldest grandson is 7 and he has been practicing lifting my 2# weights so he can get strong enough to defend himself against his sisters when they gang up on him (for aggravating them). He loves to stand on his head and turn flips too.  He also likes to climp on the edge of my balcony (which has severely decreased his permission to be out on it).  The 3 1/2  year old is possibly autistic (doesn't talk, isn't potty trained).  He loves to push his cars around the floor, aggravate his sisters and my little BooBoo (chihuahua).  He loves to get into my little refrigerator and bring me the coolade to pour for him.  He loves to eat and wants something frequently.  Will say cookie in order to get one and actually said "she took my drink" today (first 4 word sentence he's made for me this summer.  What a pleasure they've been most of the time this summer.  All will be in school this fall except 3 year old.  Will keep him 2 days a week and another sitter will watch him on the 2 days he has to go to speech class as I live 10 miles from the school and am no longer able to drive.  My daughter only has school 4 days a week this fall, though I may need to keep them when she works some.  Am anxious to see if I can handle the 3 year old without the help his older sisters have given me this summer.  I have been trying to do more with him this past week to see how it will be.  It truly exhausts me and I have went to bed at 6 or 7 each night I tried so far.  I know I won't be able to take a nap with him here as he doesn't take one anymore.  My youngest son will be at college every day and the next to the youngest will work with his Dad most of the time, so will not have much help there, except on the days they don't work.  Will see how it works out.  May have to just pay for daycare or something.

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Catch-up?

Can't believe it has been so long since my last entry.  I am feeling well.  Had surgery January 30th.  Two masses on ovaries, suspected cancer, but turned out to be a 6cm cyst on Right side and benign 4cm tumor on L side.  Spent 11 days in hospital (5 in ICU, 2 on ventilator). Home Health had to continue wound care, due to wound vacuum and just discharged me last Friday.  Feel like a new woman.  Follow-up appointment with surgeon on April 6th, hopefully last one. 

Still having little crying spells about 1-3x week.  Went off the Zoloft in the fall. 

Blood sugars have been unstable for past 2-3 months.  Have increased Lantus to 60units a day now and is improving some. Think I'll sign up for diabetes education class.  Been 25 years since I took it in nursing school and know things have changed.  .Can't read much as cataracts and poor concentration interfere with that. 

Tried to maintain weight loss of 15# from my surgery, but gained it all back.  Tried to start a new diet, but gained on it, too.  Must do better.  

My little dog Booboo is still doing well.  I have a cat now, Katy.  She's 1 1/2 years old.  She was only a week old when my son found her covered in fleas.  He washed her fleas off and I raised her on goat milk.  Have raised other cats and always put them back outside when they were older, but kept this one.  She's so spoiled.  Will jump in my lap, throw her legs straight up in the air and want me to rock her.  Sleeps all night on my right arm.  BooBoo has to sleep by my right hip.  She's actually bigger than BooBoo.  He only weighs 5# and Katy weighs about 8 1/2#.  Katy is walking back and forth in front of me.  She wants to eat as is her habit this early in the morning.  BooBoo is sleeping on my feet as is also his habit.

My daughter Amber turned 32 yesterday.  Kept her 4 kids last night so she could go out.  Only do that on her birthday.  She is a nurse now and works night shift.  The kids spend the nights she works with me and then she gets off and takes them to school. 

No church for me today as annual General Conference will be on my TV.  Hope the kids will sit still and let me watch it.  Amber is to pick them up by noon.  So many blessings, DVR being one, if the kids are rowdy, it will be recorded for my later viewing pleasure.

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