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.

My First Entry

Up again in the middle of the night.  Slept too much during the day again.  Seems like all my body wants to do this past week is sleep.  It's harder to breathe.  Such an effort to move or do anything.  I overdid it last Thursday and have had to pay for it ever since.  Even with my oxygen, I can't seem to get enough air.  So depressing, lot of tears lately.  Probably need the Zoloft increased.  So many projects left unfinished.  Have successfully solved three logic problems today.  This is a major accomplishment, before I started on my oxygen during the day back in May of this year it would take me a week or more to solve one.  Three is about where I was pre-PH.  Funny how that affects your brain.  I guess that has been the hardest for me to accept.  Difficulty reading, after loving to read since childhood.  Trouble concentrating.  Difficulty problem solving.  I am so thankful for my four children (daughter-29, sons-26, 22, 20) and sweet husband of 31 years.  Felt so guilty telling my daughter, I was too sick to keep the two year old this week.  Usually have help, but my 22 year old son's work schedule changed so he won't be available and a two and half year old forty pound very active two year old can no longer be captured by me.  She just doesn't realize her 6, 8 & 9 year old watched him for me this summer and now they are in school I just can't do it. 

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Today was a good day as days go.  I sorted through a stack of things by my recliner and put up what I sorted.  I feel better when I accomplish even the most smallest task now.  No depression, still a little guilt feelings.  Enjoy so much my little long haired chihuahua (BooBoo).  He looked so much like a little bear when we got him, we named him after Yogi's little friend.  He's brought so much to my life.  I was so depressed and felt isolated in my room alone all day, after leading an active working life, before PH.  He always listens intently to everything I say.  Breathing better today.  Still too sleepy.  Blood sugar high again today.  Wonder what's going on with that.  Want to keep track of my accomplishments even on bad days, there must surely be something to be grateful for.  I will find it.  I need to keep in touch with my friends and family.  Why have I been avoiding calling them?  Why am I so sensitive to what others say?  The least comment hits me the wrong way.  Maybe menopause?  Will try setting small goals each day. 

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Another day spent mostly sleeping.  Slept from 10pm Saturday until 8 am Sunday. Got dressed, went to church (first time this summer), came home at 1 pm, went to sleep at 2pm due to exhaustion.  Up at 7:30 pm, ate, went back to bed at 9 pm, up at 11:30, husband ready for bed.  Tried to sleep, of course I couldn't after sleeping all day, so here I am trying not to "bother" anyone.  My accomplishment today was going to church.  Couldn't stand the heat all summer, but it was nice and cloudy today.  Muscles are so weak from inactivity, need to exercise.  I can still do some chair exercises.  Used to love to read, but can't concentrate long enough anymore for the big historical romances I loved.  Loved to cross-stitch, but again concentration a big problem.  Doing genealogy a lot now, able to leave it anytime and come back to it later.  Also, trying to work on my scrapbooks,  got most of that moved upstairs already.  My daughter hasn't called all week, hope she's ok.  26 year old son wants to move back in for a few months, so we're moving my "office" into my bedroom.  It will be more convenient for me there, anyway.  I can hardly make it back upstairs after going down them, anyway.  So wasn't able to do much in my office and my 2 college boys had about took it over.  My puppy is so cute, he will be 1 in mid October.  He weighs about 4 pounds, so he's really tiny.  He "helps" me go upstairs, by barking and pulling the bottom of my caftan.  He was so happy to see me get back from church today.  He's really spoiled rotten.  He will only eat dog food if you roll it into little balls and drop them and then try to pick them up.  He will gobble it down, then.  Or if you make a line of little balls of it on the floor, he'll go down the line gobbling it up.  Otherwise, he only eats people food, oatmeal, eggs, meat, cheese, peanut butter, etc.

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Slept good last night from 10:30 until 4:30.  Hope this will get me back on a "normal" sleep schedule. To correspond with my husband's "normal" schedule.  I am so worried about him.  He's run a fever of 100-101 every evening since the end of June.  He finally went to the VA for evaluation last Thursday.  It was am and he had no fever then.  They told him to come back through ER when his fever was up for more tests, but I haven't been able to get him to do it.  It's about 50 miles from us and he doesn't feel like driving when it's up.  His blood tests were OK.  His white count is still low, but has been since 1996.  He did this one time before in 1996 and our family Dr found out he had CMV and Epstein Barr virus at the same time.  His bone marrow then was inconclusive.  He hates going to the VA for treatment, but we can no longer afford medical insurance for anyone but me, as mine is over $500 a month (with a $1000 deductible).  Spent yesterday doing nothing much, but playing with my dog, watching TV, worked a couple of math puzzles, sorted some buttons.  Did get a visit from my visiting teachers.  That program from church has been a wonderful blessing for me since I got down.  They visit me at least once a month to see if I need anything and just visit.  My youngest son brought my desk upstairs yesterday.  Hope I can get it setup and reorganized today.  It'll be nice to get started back on my scrapbooking.  My daughter stopped by yesterday, too.  Haven't seen her in about 2 weeks.  She said she had been sick and didn't want to expose me.  Seem to be worrying too much about "my little chicks" lately. 

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Another early morning.  Up at 3:30.  Worked hard yesterday, sorting out and organizing genealogy information.  It is so nice having my office moved upstairs into my bedroom.  It was so hard getting back upstairs, I seldom could used my "office" anymore.  Kind of exciting, not so boring.  I can scrapbook, do genealogy and watch TV and play with my little dog, Boo Boo.  I hope I can stay motivated, that seems to have been a problem this past year, probably the depression.  But my spirits are high this week.  I love my oldest son being here too.  I saw him only once in awhile before, maybe he'll come upstairs more often now.  Even my nephews have been to see me this past week. 

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Just exhausted all day yesterday.  Too tired to move.  Went to bed early.  Up at 4 am today.  Better than yesterday.  Ordered new bipap mask off e-bay.  Less than half-price of what I would have had to pay.  Was putting it off due to high price.  Hope it helps and hope it comes in soon.  Boo-Boo chewed on my current one so it was leaking.  Didn't associate that with "I need a new one ASAP"   Sometimes just can't think of those simple solutions.  Thanks to a new friend for helping me think.  Never watched TV for years and years and now know when every show comes on.  Still hard to concentrate for the length of a movie, but enjoy watching home & garden channel, CNN and discovery channel.  Still trying to organize my papers and so I can motivate myself to do "some work." on my scrapbooks and genealogy.  Just organizing a little every day has been of benefit to my self-esteem and depression.  Just too exhausted yesterday to do anything at all.  Have to go to town today, can't avoid it this time.  Hate to get dressed (live in caftans), Hate to think of walking back up the stairs (all 19 of them), Hate I can't avoid it this time.

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I got my computer in my room, all setup and ready to go.  I'm so excited.  I hope to accomplish many things.  If only I can stay motivated.  I won't feel so isolated any more.  I may be up late tonight since I took a nap earlier.  My husband is nearby, snoring already.  He's really been working hard lately. 

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Too tired to sleep.  Hope for better luck when my new bipap mask comes in.  Did too much today, rode into town with my husband and son.  Sat in the car while they ran errands, got out only for dinner and to pay house taxes.  Puppy was so glad to see me when I got home (he probably just wanted my chicken strip I had saved him).  But made me feel good nonetheless.  Barely made it back upstairs, too out of breath to do anything rest of the evening.  Layed down for awhile, mind racing thinking of all kinds of silly things.  Husband hurt his back this past Sunday and has been in the house most of the week.  Kind of glad he's some better for his sake, he hates being stuck in the house.  Will miss him though, he plans to work tomorrow.  Need to contact my cousins, never gave them my new e-mail address and it's probably been about a year now.  Maybe less.  Hope I can get something useful done tomorrow.  Feel like this week was not very successfull.  Have a lot of projects I want to do.  Need to get started on them.  I procrastinate so very much. 

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Up again, can't sleep, though exhausted.  Sleep schedule all messed up again.  Hope my new mask gets here tomorrow.  Husband sleeping downstairs, so I won't disturb him.  Feeling guilty, I hate to do this to him, but know he needs his sleep.  I can't go downstairs anymore at night since my oldest son moved back in.  My poor little puppy wants to go to bed at 8 pm every night, he doesn't understand what's going on either, but lies faithfully by my feet as I work on the computer or in my lap as I watch TV.  They just show commercials all night long, I think, seldom anything worth watching.  Well, I did accomplish my goals this week.  Talked to my mother, cleaned my desktop off. Talked to a friend and wrote in my diary.  I'm doing great.  Even went to church Sunday and went to town on another day last week.  This is great some months I don't go out at all.  Trying to open the curtains and get some sunlight to help with the depression.  Seems to be helping.  Now if I can fix the sleep problem all will be fine.

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my new mask in yesterday.  It's wonderful.  Slept better than I have in months.  Woke feeling so refreshed, a great feeling.  Know I'll feel more and more better in the next few days.  Thanks so much again my Ph friend for coming to my rescue and suggesting my mask might need replaced.  It truly did. 

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Well, I don't know where this week went.  It's been spent feeling somewhat depressed, I guess.  My need for sleep has been ever so much increased this week, enjoying my new mask, I expect, or making up for so many sleepless nights.  I expected a lot more energy than I've had this week, maybe better next week.  Still, time goes by too fast.  I Still didn't work on any of my half-started projects.  I Did make an effort to call my mom and a friend.  Tried to e-mail my cousins with no response there.  Really aggravated my poor spouse just now, getting up at 2:30 again, I guess he's off to sleep in the camper, poor dear.  When I used to go downstairs in the middle of the night, he couldn't sleep then either and would get up and wait for my return, so I really don't know how to fix that problem.  My oldest son (that moved back home recently) still seldom comes upstairs to see me, claiming much too busy with work, night college class and homework.  My daughter makes these 5-10 minute, I gotta run visits 2-3 times a week.  Wish they could stay and visit once in awhile.  I hate to feel clingy.  Where's my independence gone?  Why can't I get motivated?  What's wrong with me (my nature, my self, my being)? 

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Yesterday was a very good day.  Got a lot done.  Felt pretty good.  Sleep pattern was normal.  Still feel a little tired today, but up at 7 this morning have plans for working on scrapbooks today.  Typed a contract up for my husband early this morning.  This is really an interesting disease process.  The ups and downs, never know what to expect from day to day. 

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Dealing with "It"

I have decided to be gratefull I am learning patience, tolerance and forgiveness of myself for my shortcomings and keep trying to make sense of this whole thing.  I realize that I have declined significantly since this time last year.  I went to Florida for a month mid November.  Seemed to do well.  Was able to walk and enjoyed the trip.  Now I look with horror inside thinking about going again this year whenever my husband mentions it.  That's where all his siblings live and his father.  He's talking about going traveling like we always planned to do.  He wants to go to the mountains, but I don't think I can stand the higher altitude.  Sometimes, I don't have the energy or the desire to pick up the telephone when it rings.  I haven't left this room in over a week.  I can make it downstairs fine, but coming back up is just too much anymore.  It takes so long and so long to recover after the exertion.  All 19 steps, stopping on each one, trying to encourage myself to go one more.   I have opened the curtains to get some natural light in here.  I can't sit long on the computer without my back aching. 

It does make me feel less isolated to read about the challenges of my fellow ph-ers.  I hope I don't sound too negative, it's not intentional.  Since I don't want my 2 younger sons to worry, I haven't spent much time discussing my concerns.  Since my husband is still in denial to some extent, there's no help there.  My dearest best friend has her own problems.  There just seems to be no-one to unburden myself too.  I know everyone is experiencing their own progression at their own speed, so I feel I have support here.  Several people have e-mailed encouragement and suggestions that are so appreciated.  It's like having another family.  I loved reading the humor section tonight.  I read the poem to my husband.

I didn't even make my monthly trip to Wal-Mart to ride on their little cart when I got my check 2 weeks ago.  Funny, how disability checks have replaced pay checks and still cause the same kind of feeling.  It was the highlight of my entire month to go to Wal-Mart and pick up a few things.  I feel so happy when I make it to church on Sundays, but even that is down to a major effort.  I know it's been about a month since I made it.  I keep being so very tired, even when I sleep enough.  My legs keep swelling, despite the 80mg of Lasix 2x a day.  I've been avoiding the doctor, guess I'll have to go anyway.  Maybe he can change my diuretic to something else.  Well, I will try to get more positive next entry. 

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Felt really good yesterday and again today.  Went to church.  Enjoyed so much seeing old friends.  Breathing much easier today.  Wonder if the barimetric pressure affects this?  Have scheduled a checkup with my internist for later this month.  Called my mother several times this week.  Almost completed one scrapbook for my daughter of her baby pictures.  All in all feeling much better.  Even able to get back upstairs with only stopping 3 times instead of every single step like I had been lately. 

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Felt pretty good today.  Another worry.  My mom is 68 and went in for a colonoscopy.  They found a growth and did a biopsy.  Will let her know the results within 2 weeks.  She went back to work today as she still works as a payroll clerk in a large nursing home 30 miles from where she lives.  She's always been very healthy other than COPD from smoking.   So hopefully results will be good. 

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Beautiful Sunday morning.  Feel much better today, not quite well enough to make it to church this morning.  Had respiratory infection all last week.  Have been working some on my scrapbooks.  Boo Boo has been helping me.  He loves to sneak scrap paper out of the trash and toss it around the room.  He is such a precious little dog.  A very dear friend and companion.  Supposed to see the doctor Wednesday.  Need to schedule mammogram for me and mom.  Her colon biopsy came out ok, will repeat in 3 years.  Much relief there.  Lost my sweet Dad in April 2000 and still miss him very much.  Miss my grandkids, haven't seen much of them since school started back. 

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Feeling better today.  On antibiotics for ear infection.  Had eye infection, upper respiratory now ear, one thing right after another.  Glad I am feeling better, working on scrapbooks, playing on computer.  My dear friend sent me over some sweats, which I never wear as couldn't find any big enough to be comfortable.  Don't know about the pants yet, but the tops are warm and snuggly, so very soft and no band around the bottom.  Plenty of room for my large self.  Have another friend in the hospital.  Know she's lonely, but have felt too bad myself to call her.  Will do that today for sure.  My little dog learned a new word.  When my husband calls up on the intercom I say talk to daddy and he barks his little head off.  He is such a sweet little boy.  Doesn't mind too much better than my own sons did, though, he's just as entertaining. 

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Up early (4:30 am) Feeling better today.  Husband and BooBoo sleep on.  Have been concentrating on scrapbook lately, but must get to work on Christmas presents today as it fast approaches.  Plan to make copies of family history and photos for my siblings and nieces and nephews.  Have been ordering albums off ebay all year to have enough to go around.  Feeling much less depressed past few days.  

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Awake in the middle of the night again.  Hope it's not the start of another period of mixed up days and nights.  Weather cold, then hot, then cold again.  Rescheduled doctor appt for Dec 17th.  Thinking about changing to local doctor who is new in town and easier for me to get to.  Will try him next year I think.  Have completed another scrapbook and finished a project I was doing for my mother too.  So feel proud of my recent accomplishments.  Finances improving somewhat.  Got an $8 raise on my disability, seems they hadn't figured in my last quarter earnings.  Hope I can buy my meds once I lose this insurance and start on medicare next September.  Have had a lot of trouble with gout in my knees this past week or two.  Probably too much turkey and ham.  Really must go on a stricter diet.  Feel enormous lately.  Hope to feel like Christmas shopping soon.  Don't need much this year as I plan to finish scrapbooks/family trees for most everyone.  Just a few little things for my kids and grandkids and mother and hubby.  Think I'll get the little tree out for my room next week.  Will help inspire me I'm sure.

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What a busy month this has been.  But productive.  I accomplished 11 of the 12 projects I had to complete before Christmas, which is super good for me.  One brother will have to wait a little longer for his present, but he understands.  I feel better, CHF now under control.  Dr took me off the Actos, started on Insulin per sliding scale, so far haven't had to use it as the Diabeta and diet is controlling my sugar.  Blood tests good except for anemia, sed rate and RA so he's ordered me to a Rheumatologist and a few more tests, what fun.  Sleep pattern messed up some due to naps in day, but can't seem to make it without one.  Merry Christmas to all.  My spirits are great today.

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Feeling great today.  Have been sick with respiratory infection past two weeks.  Slowly, but surely accomplishing my goals, time to set new ones.  Hope to be up to going to Florida next month.  Not sure about how to transport my liquid oxygen tank, or if it can be safely carried in our van.  Was able to breath a lot easier last time I went to Florida than I can here, something about the lower altitude, I think. Would like to stay a month, if I can.  Have been sorting, organizing, throwing out, trying to give away, clear out excess, things not using and never will.  Feel major accomplishment at bottom of every box and bag of trash filled up.  Amazing at the amount of clutter that can accumulate over 50 years. (My 50th birthday will be in March).  Half a century, how amazing.  I remember as a child when my mother turned 30 (I was 12).  I thought that was so ancient.  Boo Boo is still doing well, but does need a checkup soon, due to his heart problem and time for his rabies shot this month, I think.  He was one years old in October.  Haven't seen my daughter or grandkids since they went back to school after Christmas Vacation.   Getting harder and harder to keep up with my personal hygiene.  Hard to take a shower, hard to stand up long enough to do it, after I get my hair washed and then have to get dressed, too.  Too hard to get back upstairs, to go down to use the tub.  Just exhausted after bathing, hard to get dressed and then make that trip back up the stairs.  Son installed a bidet onto my toilet yesterday, should help.  Well even though I feel better physically today, I am depressed, doesn't make sense does it.  Ever since my mom said she loved me this morning, I've felt like crying.  Mom is working every day, and she seldom visits, because she can't get upstairs easily and she smokes so she can't do that at my house.  Started on Insulin a few weeks ago, only had to use it at supper time, so far.  Dr took me off the Actos, since it was adversely affecting my CHF.  My edema is much less now, so that is good.  I feel like I'm losing weight, that should help a lot.  He wants me to get an occult stool due to anemia and go to a rheumatologist due to high sed rate and RA.  Haven't done either one yet, but do have a mammogram scheduled for next week.  Will get to go outside.  Weather has been really nice lately. Have had window open this week.  Fresh air is good.  Trying to let in some sunshine, too.  Will help with depression.

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Continue to be plagued with sinus, upper respiratory infections.  Seem to catch something any time I get around someone with something.  Immune system is nil.  Think I'm over the worst of it now.  Trying to convince myself to work at some project now.  Probably another scrapbook.  BooBoo needs to get a rabies shot so will have to get appointment for him soon.   

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Have had a great past two weeks.  Felt WONDERFUL!  Had 3 of 4 grandkids this week for their Spring Break.  Such a pleasure.  Have missed seeing them regularly since last summer.  BooBoo is so excited to have such energetic playmates.  Not too much work accomplished this week, but last week started listing things on ebay to sell.  A new skill for me.  Have talked to my mom and sister several times on the phone and my Aunt called me to wish me an early happy birthday.  I will be 50 Saturday and am so proud to have lived a half a century.  My husband's birthday is two days before mine, so we always celebrate together on the day in between our birthdays.  I continue to sort and try to get order or reduce clutter in my life to simplify things and get organized from years and years of neglect when I was working.  It continues to amaze me what I find.  I have been working on scrapbooks, sporadically and genealogy when the mood strikes.  Overall, feel like SPRING has sprung!  Since this is the South, it really has.  The trees are budding out, the birds sing daily. 

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It brings so much pleasure to me to watch my little grandchildren growing up.  Most everything they do reminds me of myself when I was young or one of my own children's antics.  It is worth the exhaustion I feel when they leave.  Hopefully I can keep it up this summer.  Tabitha is nearly 11 she is a big help (most of the time).  At least one of them helps to corral the busy 3 year old.  He is so big for his age, it's hard to remember he just turned 3 in February.  They were coughing all day with a respiratory infection.  Hope I don't catch it.  Tabitha is at the stage where she doesn't know if she wants to grow up or keep playing with her dolls.  I used to collect dolls, she loves to play with my trunk full of dolls that actually belonged to me and my sisters when we were little girls.  Many were handmade by my grandmother.  I told her that trunk of dolls will be hers one day.  Courtney is 9 and doesn't really care for dolls.  She loves the computer, cleaning house (I never had one like that) and gymnastics. Brandon is soon to be 7 and he's into the "I'm going to be a super hero when I grow up stage"  He changes from spiderman to hulk to who knows what from week to week.  Jonathan wants to be my puppy, he loves my little Boo Boo and mimics everything he does.  He wags his tail and chases him around on his hands and knees and whenever Boo Boo jumps in my lap for love, so does Jonathan.  It's such fun watching the different stages in their childhood. 

I had a great time healthwise for about 3 weeks.  I lost 11 pounds so far with my dieting.  The more I lose, I know will help me breath easier.   I have been not feeling so well this past week, but hopefully will get stronger again soon. 

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Feeling somewhat depressed today for no real reason.  It's a beautiful sunshiny day today.  Must try to get outside for awhile.  It may be because I am having a hard time figuring out the taxes this year.  Procrastinated much too long.  Thinking processes are slower than usual.  Had a hard time a couple of weeks ago trying to complete my CEU's to renew my RN license.  Know I may never use it again, but wanted to keep it.  I finally did it and was able to renew before the deadline.  Taxes are another problem.  If I could keep up with my husband's business receipts as they come in it would make it a lot less stressful and easier to complete.  I am just so disorganized.  Every year it seems to get worse and worse.

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