Welcome to our new diarist!

Welcome Kathryn Levitt, our new diarist at PHCentral.

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Introduction

This is the first entry in my online PH diary.  I am 36, married, one beautiful child (Emily), and I am a teacher.  I have had PPH for fourteen years...been on Flolan for ten this May.  There have been a few ups and downs in my journey with PPH, but overall, I am doing very well and I have a lot to be thankful for.  I have a wonderful family, friends, and I am able to live a relatively "normal" life.  I work-just got a new job-I paint, quilt, travel once in awhile-although it is my dream to travel more than I do.  I get around pretty good.  I do have issues with anxiety and fear...which I will get into later.

Today, I was offered a job at a private school-it pays more than the public schools, so I am excited about that.  This was my second interview at the school and I had to give a lesson in front of the student council and then they interviewed me...it is funny...after dealing with this illness and coming so close to death, things like interviews do not frighten me...whenever I start to get nervous, I just think about all I have been through in the last 14 years and I become more brave. I wish I could be that brave when it came to PPH...that makes me nervous.  I try not to think about it too much...to tell you the truth, I was very reluctant to start a PPH diary because I thought it would focus my attention too much on the disease...but, I realized there is no running away from this disease.  I can deal with it and still live a "normal" life...I can talk about it with others without focusing on it too much.  I think writing about what I go through may actually be therapeutic for me- and perhaps others.  I will write more in a day or so...thanks for reading :) 

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Very tired today

I woke up this morning feeling so bad.  I slept okay...but not as long as I should have.  I felt bad for about two hours and then started to come around...but, I did take a nap in the afternoon and woke up feeling so fatigued I cried.  Again...I got better within an hour...but lately it seems I am more tired.  I was taken off tracleer 6 weeks ago...I am on Flolan and the tracleer was not making a difference...so my doctor and I decided I no longer needed it...maybe my body is going through some withdraws...I also went off Prozac three months ago.  It was causing mood swings, nightmares, and weight gain.  Maybe that is effecting me as well.  I had a cath two months ago and everything was fine...so that is at least good news.  The truth is, if I am home and resting...I feel worse.  When I get up and start doing things I feel better...I am always tired, but I feel better if I am busy...is this common?  I start my new job on Monday, so I need to be on a schedule by then. I am going to have to start getting ready at 6:00 in the morning...I get up at 6:30 to take Emily to school...so it is not much of a stretch.  I just hate this feeling of pure exhaustion that I get...I feel as if someone has stuck pins in me and all my energy has been drained out...know what I mean?  My husband tells me everyone gets tired...but I try to explain to him that PH tiredness is not the same as regular tiredness...he says he knows what I am going through because he is with me all the time and has been since I started Flolan 10 years ago...I was dx two months after we were married....but can someone who does not have PH really understand what it is like?  You know how they make those fake pregnancy bellies for husbands to wear..so they can sympathize with their pregnant wives...I wish they had something like that for us...a safe way for our caretakers to really understand what we feel.

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family fight...cannot sleep at night.

I actually felt okay today...but had a fight with my father around dinner time.  It is long story...here is the condensed version...he has a wife...they have been married for almost 30 years...since I was eight.  I do not like her...at all!  I do not like her two kids...they treated me and my brother bad our entire lives..my father is always trying to get me to talk to them or socialize with them...his birthday is Sunday and he wanted me, Brian, and Emily to come over with all of them for dinner...I relunctantly agreed...but when I told him I was not coming over four hours early to visit, he became very irate....he told me not to bother to come and that i ruined his birthday...he knows how I feel...yet, he continues to use guilt to try and make me see these people that I cannot stand. Not really having to with PH, but just had to vent...he hung up on me...he is 68 mind you...but hangs up on my often.  I told him I would never be friends with his other family and he had to let it go...as usual, I am the bad guy and they are perfect.  I do not need this stress.

I have to learn calming techniques.  I am not sleeping well at all...is this common in people with PH?  I wake up a lot and am very restless at night.  It is hard to get in a comfortable position with a catheter in my chest... I have been on Flolan for ten years and I still cannot get used to that thing!  Any advice?  I have so much on my mind at night and it is so hard to wind down and clear my head.  I worry a lot and I know I need to stop...if I wasn't so phobic of medications I would try a sleeping pill...but I am afraid it will make me groggy the next day. I  hate that feeling. 

talk to you all later :)

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losing weight, finally!

Isn't it nice when you have a day just for you?  I start my new job on Monday...so I am hitting the spa today.  I am getting nails and toes done...and a new hairdo.  I need a makeover!  I have lost 13 pounds...I have 55 more to go!  I gained over 50 pounds the three years I was on Prozac...I went off it two months ago and feel much better and I have lost weight...which is always great.  After I gained the weight...for so long I convinced myself that I no longer cared what I look like.  Meanwhile, I was letting myself go and hurting my health.  I had the attitude, "I am probably going to die from PH sooner than later...so why not eat what I want?"  Bad and dangerous way to think. I had a wake up call in December when my new PH doc said I was morbidly obese (215)-yikes it hurts to write that number.  I had not weighed myself on a docs scale in awhile...he said I had to lose at least 25 pounds...I know this sounds so stupid, but he described to me how all the extra fat I had on my body had blood vessels in it...more areas for my heart to have to pump blood to...common sense I know...but I guess I never thought of it like that...so now I am 202-cannot wait to break the 200 mark and never see that again.  My ultimate goal, is to be 145 by Christmas. That is what I weighed when I got married...of course, if I was stuck at 165-175, it would be a massive improvement. But, I am taking it one day at a time...since going off the prozac, I do not have mood swings...my husband says it is such a nice change:) and I no longer eat and eat and eat...it really can cause increased appetite...now, I am rarely hungry...and when I do eat, it is much smaller amounts.  I think if I could go and fast walk 3 miles per day, the weight would come off faster...but since I cannot, it will take longer...that is okay with me...as long as it is going down and not up!  So, with this weight loss, I came to the realization that yes, I am somewhat shallow and do care what I look like.  My husband does too...which is not a bad thing.  He loves me just as much thin or fat...but I can see he is starting to look at me the way he used to...which is nice.  And I am also looking at myself the way I used to as well...which is also nice!  Illness changes your looks...and can make you hate to look at yourself in the mirror...I have the Flolan rash...need I say more...but, I can look in my eyes and still see the same person is in there...and the more weight I lose, the more recognizable I will be.

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Epiphany/the secret

What a weekend this has been...has anyone ever watched "The Secret" video?  It is a self help movement...about thinking more positively and how it affects what you attract...anyway, my husband and I watched it and my hhusband's personality has made a complete transformation...for the better...it has been difficult for me to adjust to.  He and I have gotten into a habit of being negative and critical of others...he was the one like this when we got married and I was not...I took on his habits at the marriage went on...now, all of a sudden...he is a different person...he is more relaxed, more positive, and more patient...it is weird...I am happy for him, but just not used to the new him...now, I am modeling him once again...where along the way did I lose myself?  I do not blame him...I blame PH and past hurt and anger I never got over...I am angry still because I am sick...when I feel bad,  I can be a real bitch...as you may have read on my previous entry...I have anger issues with my father and step family...well, yesterday, I had my epiphany...I ended up going to my father's house for dinner with my step family...I did not want to go and I was anxious all weekend and pissed off all day yesterday because I just did not want to go...there is a long history there...anyway, I had to go because my father has helped us out a lot financially in the last two months and in the past...my mom said I had to go...it was the right thing to do...I was so worried and upset...I cried and carried on...as I usually do...I have become quite the drama queen...we get to the house...and it was such not a big deal....everyone was very nice and I got to see my niece and nephew for the first time...it was nice to see my step brother and sister...I have not seen them in five years...I have been alienating myself from the family for things that happened long ago...I realized at that moment how immature I was acting...carrying on and on...making life unfun for Brian  and others all the time...I make a big deal out of so many things and get mad and anxious so easily...I worry way too much about my health...even though I am doing okay...I worry all the time and I am anxious most of the time. All this week, my husband has been telling me that we need to relax more...and be happier more positive people...he said this so much this week I wanted to punch his lights out...but, yesterday I realized he was so right.  I think there is a lot to the "Secret."  If anyone has watched it, I would be interested to hear your opinion...I am a Christian...but I still think there is alot to the "secret's" message.  So, I am starting my new job today and I am going to really try to be more positive and not worry as much...can I do this?  I may need professional help!  Any input is invited...are others with PH dealing with these emotions...?  Before I was sick, in college, I am a very happy-go-lucky gal...at least that is how I remember it...maybe I was never happy...take care-Kathy

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TGIF!

Here it is the end of my first week at my new job and already I am so glad it is Friday. I started teaching at a school that is for "troubled girls."  The blatant disrespect I have experienced this week has been pretty bad.  I am on the verge of tears. It is very discouraging.  This school has a very high turn-over rate for teachers and now I see why.  The students are so rude and mean, it is incredible.  I am between a rock and a hard place.  I have to work...we are behind on our bills and I have borrowed my limit from my parents.  The only other option is to sell my house for a much cheaper price than it is worth and find something else to do...the thing is, this job pays well.  If I stick it out through the fall...I can probably get into a regular school- I know it would be rough here, but not this bad!  I was at a great school last year for three years.  I quit last December because I missed a lot of work due to my health and the administration did not hanlde it well.  They were very nasty about it and one day I just quit.  I regret it so much now.  I miss my friends and students.  I was mad and when I am mad I make rash decisions...I have always been that way and I know I need to change that.  So, here I am at this new school.  There are no openings for me in the regular public schools right now.  Everyone that works here is very nice, but it is structured so differently, I am not sure if I like it.  Plus, it is dawning on me that I will not have my summer off either...this is a year-round school. I am venting...sorry.   I wish we never bought this house...another one of my brilliant decisions...I pushed for it and now it is eating up all of our money.  We are fixing it up, so we can sell it...but that is about a year away...if we want to make any money...does anyone else have financial issues due to being sick?  I am assuming since many are very sick and cannot work, it is an issue.  Take care all and I will write more this weekend.

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Bad day

Well, can life get any worse.  I tried to work...I have been trying...I cannot.  I had to quit yet another job today.  I am too tired and too SOB...a little dizzy.  Looks as if we are going to lose our house...my husband cannot stop blaming me for buying it...we are fighting all the time and I am at my wits end.  We were in this situation before last fall and I left him twice because of it.  I cannot work any longer and he just cannot deal with it.  I told him, that if he cannot accept living with a sick wife...he can move on.  I love him and he loves me, but the stress is beyond anything we can handle. I am crying right now because it makes me so sad.  If I was not sick, everything would be fine.  I worked for three years...had to take some sick leave here and there, we have always been struggling financially and have had to borrow so much money from my parents...we are behind on our mortgage and bills...now, Brian is mad once again because I cannot work...neither of us knows what to do.  We can sell the house fast and make maybe 10K-although there is almost 75K in equity.  He cannot take losing all that money.  But, I cannot take the stress any longer.  Am I making sense here?  I feel as if I am babbling.  I am so tired all the time and so stressed out, I cannot tell you.  I love my husband and do not want a divorce...but at this point it would be so much easier on me if Emily and I just moved in with my mom...she does not think I should work at all.  Brian says he loves me very much, but he is not willing to do what it takes to see that I am as healthy as I need to be.  He does not mean me harm, I think he is just too immature to deal with all this...I think I am too.  I am praying for God to help me, but no answers or help are coming.  I have been praying for months...things are just as bad if not worse.  Any ideas?  Can anyone relate?

Take care-Kathy

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Better today

Well, it was a rough last few days...if you have been reading the saga of my life you know what I am talking about.  Even this morning my husband was asking me if I can still save the job I quit yesterday...he thinks that if I can rest for a week, all will be better.  He just does not get it sometimes.  I wish it was that easy...he did finally accept the fact that we are selling the house for much less than it is worth and that he is going to have to step up to the plate and earn an extra income...he only works 30 hours a week now...he has a radio show.  He told me today that he realizes my health is more important and that as long as the family is together we will be okay.  I told him yesterday...there are parents that lose their children to cancer and other bad things and how blessed we are to have Emily and each other...I think it is finally sinking in.  I want to work someday...I hope I can go back to teaching...but for now, I cannot.  I have been trying to get my disability reinstated...hopefully God can move that along.  Today I am seeing an ENT.  I have been getting very dizzy at night while sleeping and I am having other episodes of vertigo as well.  I am going to see if there is something that can help me with this...take care all and I will write again real soon :)

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