Welcome to our new diarist!

Welcome to Marcia Beverly, our newest PHCentral diarist.

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Where to begin???

     Where to begin?   I've now been diagnosed for a year and a half.  There have been many milestones in which I wanted to document how I was feeling at the time, but I had trouble getting this diary started.  I've never been one to take the time to keep a diary, but it gives me comfort to read others and so I want to join in.

     I was an elementary teacher for 25 years and I feel adrift since taking disability retirement.  I did some volunteering last year until I started feeling bad again and I haven't even called anyone this school year.  That was a big part of my social life, so it's quite a change spending my days alone.  I don't mind, though.  It's nice not to have to rush anywhere and deadlines are mostly a thing of the past.

     My immediate crisis is getting my 22 year old daughter and her two babies (6 months and 18 months) moved back home to Dallas from Nashville.  She fell in love and transferred schools and moved there.  Then ended up pregnant, not once, but twice.  (I had hoped she was smarter than that!) They are beautiful and I love them, but her living situation is a nightmare.  She's still going to cosmetology school (will she EVER finish?), but the daddy of the babies is verbally abusive and threatens to throw her out every time he gets mad. Not to mention they live in a pigsty.  She has no support and is 700 miles away from a large and loving family.  Soooo, she finally has had enough and we are going to get them tomorrow and bring them home for her to finish school. 

    All this has been terrible stressful for her and myself.  Having them in the house is daunting.  We have a two story house and I can barely get myself up the stairs, much less the boys.  But it is for a short time and we'll get through.  I promise to take care of myself.

   I have been more SOB since June and after messing around  with my lasix and switching to bumex ,it was decided to do another RHC last week.  I was relieved because I thought it might finally show something is amiss.  I was right.  My cardiac output is down.  I don't know how much because I haven't seen the report yet, but it was enough for Dr. Torres to look concerned and up my PH med.  I'm on ambrisentan, the study drug, and since we don't know my dosage, I'm watching to see if there is a change.  If I don't improve, he's going to add another med.  I'm kinda worried about that because I don't know what it will be.  He said he's not inclined toward viagra because studies are showing no improvement after 6 months.  He'd love to put me on the Remodulin pill, but you can't be on two study drugs at once.  But I'll cross that bridge when I come to it.

   So, it's 5 in the morning and I can't sleep for the second time this week and we have a long drive ahead of us today.  I just hope all goes smoothly with no fighting, because I'm not up for that.  It sure helps to be able to write all this down.

  Oh, I wrote last week about ending up passing out and going to the hospital after my RHC.  It was terribly frightening for all concerned.  My BP was low all night in the ER and they couldn't send me to a room until I was stable.  I asked if anyone had a similar episode and only one person answered.  I know it was New Year's weekend, but I feel kinda scared and lonely and needed support.  I guess everyone was too busy to read all the posts. But I'm getting a little depressed here and need the support.

  This is a long post and I'm going to go lay down and try to get some more sleep before we hit the road.  Thanks for listening.

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From Tennessee to Texas

    Well, my daughter and babies are home safe and sound.  Yes, baby drool is good for what ails you!

     The trip was as ridiculous as one could get.  It was sad to take the kids from their father and my husband and daughter had to load the car and truck by themselves, because I couldn't help.  The tarp kept coming loose due to the wind and we got a late start.  After stopping many times at Lowe's or WalMart to get more bungie cords and a new tarp, the tail gate started falling down every two miles.  We left a trail of bungie cords across TN and after 7 hours we had made it to Jackson, which is a two hour trip.  I told my husband that I had had all the fun I could stand for one day and we got a motel room.  He had wanted to drive straight through because he thought someone would steal all those toys in the back of the truck.  The next day we rented a U-Haul and at noon we were on our way.  So we pulled into Dallas about 9:30 just as this cold front hit with rain and cold.  But we're here safe and sound and trying to keep warm.

     Yesterday and today we've taken care of all the things that go with three people moving into your house.  My back started killing me again.  It had started hurting after that great hospital visit two weeks ago and I need to visit the chiropractor.  I can hardly stand upright and it sure doesn't let me do much as far as getting eveything squared away.  BUT I have called it a day at 4:30 and I plan to do nothing more than read or watch TV.  We need to find a babysitter during the day because I know I can't take care of the babies by myself.  It is just too much.

     I'm hoping the medicine is kicking in, but I've been too busy to tell if it's helping.  Tuesday will be two weeks.  I must say I've been blowing and going since Wed and I haven't collapsed yet, so maybe it's working.  I got my RHC report in the mail and my cardiac output is down, my mean went from 60 to 65 and my pulmonary resistance is up.  So none of that can be a good thing.  Bummer.  I hate this disease.

     That's all I can write for now.  I must go lay down and take a load off my back.  Thank you Nancy, Cheryl, and Sue for the kind words of encouragement.  Nancy, the baby stuff is precious.

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Cabin fever too

I've got cabin fever too!! This weather is ridiculous.  Now it's raining and up to 40 degrees.  A real heat wave.  Well, with all the baby toys and laundry around my house it sure doesn't seem like home.  Erin's having to wash everything because her boyfriend smoked and everything stinks.  She says it's so nice to have everything clean.

Everything may be clean to her, but my house is a wreck.  Every time we go to put something away or work on a closet the boys are taking a nap, so it's very slow going.  It doesn't help to not be able to get out of the house.  I think I'll escape anyway today for a while.  I got a GC for a massage and I think that may be just the ticket for some quality, relaxation.  I might slip off to a movie, hehe.   Sue, I know how you feel!

I'm feeling kind of down because of the non-tranquil house thing, but also I don't think the meds are doing the trick.  It is still such an effort to go up the stairs and do anything.  I can feel my heart pounding most of the time.  It is a nuisance but also troubling.  Last night I had trouble breathing when I laid down.  That's the first time that's happened.  I actually had to sit back up. It helped when I put on my O2, but I wasn't happy about that either.  I know many of you sit propped up to sleep, but that is uncomfortable on my back.  Oh, well.  Enough crying in my beer!

We're invited to a surprise birthday party in Austin tomorrow.  The weather has really done a number down there and I just don't think I have the energy for it.  It would be fun, though.  I'll think about it.

That's all for today.  Hope I snap out of this funk. Marcia

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Keep on keepin on . . .

Dear Diary,

   I just got an e-mail from my sister-in-law and she fell Thursday nite and broke her wrist and sprained her ankle.  She's in a cast up past her elbow and facing surgery next week.  I just can't believe it.  She's had such a traumatic few months that I can't believe one more thing has happened.  You see, my husband has six sisters.  Yes, six.  And I had four brothers, so they are the sisters I never had until the past 27 years.  Linda is the oldest and totally capable of running things smoothly.  Her husband is about 12 years older than her,  they are retired and he was diagnosed with kidney cancer a couple of years ago.  They removed it and he was fine for about a year and then three single cells were found last spring.  He went on chemo, but the drug has terrible side effects.  So about the time he opted to not do the chemo, they found some cancer in his brain.  They have done two surgeries and radiated.  It was easy to get to and they hoped there were no lasting cells.  This was barely a month ago and now Linda has broken her wrist.  The message also said that they found some spots on Ron's bones and he's back on chemo.  It is all so shocking because this is a family that is blessed with great people and health.  Almost every time something has come up it seems that we could lick it.  

    I feel so helpless to help them except to pray.  Ron and I compare notes about therapy because his drug is fairly new and they don't have a support group.  He and I have a lot of the same problems living with a chronic illness.   I feel that he is facing a much more unknown foe than I am.  And it seems to be gaining on him.   That is so scary.  I'm afraid for myself, but there is some denial mechanism in me that makes me think I'll live a good while longer.  I'm not so sure about Ron.   He was so tired at Thanksgiving.  Both of us had absolutely no energy whatsoever.  I don't even remember eating.  I know I didn't get dessert.  He jus sat.  When he's not on the chemo he feels fine.  I wish they could find one without the side effects.

    I've supposedly had the higher dosage of ambrisentan now for about 6 weeks.  I don't think I have the higher dosage and that's scary because I don't know what is next. Fear of the unknown is a bitch.  I guess I need to call the doctor next week.  I was waiting until my appt on the 20th, but I need to make sure I'll see the doctor this time. 

    I've really tried hard not to get too tired with the babies here.  But Erin found out that it may take another 6 weeks to get the paper work from the state and she's looking for a job in the mean time.  We found a babysitter for Caleb and I'll watch Ben (7 months).  He not too much work and I'll put the pack n play downstairs so I don't have to take him up and down.  It is still scary, though, because I get so tired in the afternoon.  I'll have to pick Caleb up by 4:30 when she goes back to school and there's no one to help get them inside and feed them.  He is walking now and maybe he can walk into the house and I can have food ready when he gets here.  I know it will all work out.  It's just so stressful and it scares me that this disease is already getting worse.  I don't want to jeopardize my health, but I want to be a loving grandma too.  I hate having restrictions on what I want to do.  But it could be so much worse, so I shouldn't complain.  So many have it SO much worse than me. 

  Oh, well.  Enough of the pity party.  I'll call the doc next week and we'll work on the next step.  9

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Jenni

OMG!  I just can't believe that Jenni is gone.  I remember her from her trip to Germany last summer and I looked forward to reading about her trip.  We had been to Germany a few years ago and it was fun to compare notes.  I couldn't believe she had enough energy to do all the things she did. 

I remember her visit to the ER when they tried to take away her pump because they thought it was a cell phone!  I went back and re reread her whole diary to get to know her better.  She was a very special young woman.  I just can't believe she's gone.  Her last entry was September.  She had just been to the doctor and had the fluid around her heart, but Bailey and Cheryl said they had had that and it was fixed.  She usually kept up her diary fairly regularly.  Has she been that sick since Sept? 

I wasn't close to her and don't know any details, but this disease is fightening when you keep hearing of people dieing.  I know the prognosis, but so many have lived with this for so long that I consider myself one of the lucky ones who will live with this for a good many years.  I was only diagnosed in 2005, so I don't know what makes seemingly stable people die with this disease.  I know Marcia in Maine had been sick for a while, but then there was Marcine and now Jenni.  These are all people I got to know here at PHC.  Does anyone have any answers?  There are so many new people on the board that I don't want to scare them with my questions.  How do you go from fairly steady and holding on to death?  I know the disease is progressive, but doesn't the medicine keep it in check for a good while?  Maybe if I was closer to these people, I would know the answer.  When poor Tim died I knew what a battle he had fought so it wasn't such a shock.  I'm rambling here... sorry.

I want to go get out and live my life to the fullest, but I'm afraid of overdoing it and getting sicker.  There are just so many questions. . .

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Old Friends and Good Times

This past weekend was SUCH a shot in the arm!!  I'm energized and ready to go.

I was invited to attend the first Galveston PH Support Group Meeting and said yes because I was born down there in Texas City and went to Univ. of Houston and lived in Houston for 20 years.  A year ago my college roommate had called and told me they had moved from SugarLand back down to Galveston and wanted me to come visit.  She also told me that when they had lived in SugarLand they had had a beach cabin and had gotten to be good friends with a couple named Lynn and Vernon.  It turns out that Lynn was one of my best friends in high school in Beaumont!!! What a small world!  So Lynn and I started e-mailing thru classmates.com and they ALL wanted me to come down.  I also had kept in touch for the last 5 years with my childhood best friend in Texas City and knew she would enjoy a visit too. SOOO, this was an excellent opportunity to see old friends and have a good time. (I also needed a break from the precious babies.)

Well Joanne (the childhood friend) is a nurse and teaches in Galveston, so I invited her to come join me for the PH Support Meeting.  She loved learning all about PH and we enjoyed a great meal too.  We visited the old neighborhood, visited her parents (her mom and mine had been great friends), went down Girl Scout Lane, where we had planted oak trees when we were 10 and now they are mature and gorgeous and just had a blast catching up.  We could still joke with each other about who talks the most and had laughs at the silly things we remembered.  Her mom is convinced we cheated our way through most of our Girl Scout badges, but my mom is toooo honest for that!

Then, after 24 hours I hugged her goodbye and headed for Galveston to my college roommates home.  Jean and Bill bought a bungalow in a neighborhood built in the thirties.  It is a cute two bedroom with wood floors and a garage apt in the back.  She has gone back to teaching at a private school, but her hobby is quilting.  She inspired me to get back to my crafty day of the past. They closed on the house a week before Rita hit and it has taken this long to get the insurance money and get things fixed up just so.  Then we headed out to west beach to my high school friend's home.  They live in a beautiful canal house and she has a craft room downstairs that has everything a crafter could want.  (More inspiration!).  Lynn was SO excited to see me.  We hadn't seen each other since our 20th reunion in 1992.  The three of us just talked, talked, talked.

It is so funny how, when seeing an old friend, you can just pick up where you left off, share intimate details and try to solve all the problems of the world.  We had only time to talk about them, but I'll go back and maybe we can solve some of them too. It was nice to know that others have difficulties with their children too.

I just know that this morning I was showered, dressed and had make up on before I even came downstairs and I've already made a list of things to do soon.  I needed that shot in the arm to get back to enjoying life more..  This day is beautiful and my front flower bed needs trimming.  I have a craft closet to clean out and a lot of baggage to throw out. (symbolism intended)

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Another Beautiful Day

Here in Dallas it is another beautiful day.  We've had gorgeous spring weather all week.  My energy from earlier in the week resulted in three garbage sacks and a nice, clean misc closet in the guest room.  It contains many shelves of craft material, costumes, decorations and old pictures.  I even found two pictures of my mom that I thought she had taken back. One was when she was about 22 with longer hair and one when  was a baby of about 8 months.  She looked so young and beautiful. 

Caleb (almost 20 months) has discovered the joy of outdoors.  He loves it out there.  He'll go get his shoes and hand them to me and go to the back door and try to open the handle.  Except for trying that after dark, we go outside.  Yesterday was a little chilly, but the back porch blocks some of the wind and the sun is warm.  Little brother, Ben, at 8 months just sits contentedly in the sun.  Erin is at orientation for her new job at Sears, so Bompa (that's what Caleb calls Grandpa) and I are babysitting. They are both asleep now, but Caleb is cutting a new tooth, a molar, so he might be Mr. Crankypants later on.  I'm glad it's a pretty day so we can go out.

Dr. Torres ordered another cardiac MRI, which turned out fine and my BNP went from 179 down to 169, so that is good.  He upped my Coreg in the am and I find myself with more energy and don't notice that annoying heart beat all the time.  My energy from last weekend finally faded on Thursday and Friday.  I didn't have any energy and rested, read and slept most of the day.  I feel better today and have already accomplished cleaning out Erin's file folders.  Unfortunately, we didn't find her SS card that we were looking for.  It could be anywhere in that pigsty of a house she used to live in in TN.  I wish she had filed it in the box.  We would have it now.  We'd have Caleb's too. 

Erin starts her new job Wed.  The only hitch is the babysitter we have selected for Caleb.  (I'll be taking care of Ben myself)  She keeps teacher's kids so she can have the same breaks.  And the second week of March is Spring Break. So no baby sitter.  And my husband will be out of town.  Susie, my 20 year old is fairly worthless before noon and she has school Monday and Wed.  She'll have to rally for the cause if I need her.  I'm just concerned about doing too much.  I won't do it on purpose, but who knows?  I don't know Erin's hours yet, so it might not be such a big deal.  At least Caleb can climb the stairs with me by his side and that helps a lot.  We'll see.

I'm going to go enjoy this nice weather and work on getting some more closets cleaned out.  It feels so GOOD to have some more space to work with.  I even found a quilting project already started and waiting for me to continue.

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Babysitting Duties

Today my daughter finally started work.  She's having to wait on paperwork from Austin before she can get back into cosmetology school, so she got a job in the mean time.  Yippee! 

The only problem is that the babysitter is in the hospital with chest pains.  Yikes!  I know how that feels.  She keeps 5 kids and her 20 year old daughter had to come home from college to take care of them yesterday.  She obviously can't take one more, so my little Caleb is home with Mimi today along with little brother.  This was what I feared when they came home.  Fortunately, I am feeling so much better since upping my Coreg that I think I can make it.  Tomorrow my other daughter can be here to help, but she had school today.  Next week is spring break and the challenge of keeping them again.  But after that it should be easier IF the babysitter is back in business and feeling good.  I hope they figure it out soon and can do something easy, like a stent, to fix her up.

Thank goodness the weather is holding.  It is 66 degrees and sunny.  The boys LOVE it outside.  If anyone fusses we just go outside.  Maybe I can even get the back porch cleaned of leaves.  I just don't want to overdo it.  I have to go the cardiologist at 3.  Fortunately, Susie gets home with my car and can take care of Caleb.  I'll take Ben with me.  With such a full day, we should all sleep good tonight!  I thought I would last night, but I awoke at 3 and had to read for an hour to get back to sleep.

I'm going to go throw some shepherd pie together for supper because I know I'll be too tired to do it after the doc appt.  I pray my energy level stays up.

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Another Lovely Day

Well, I made it through yesterday.  I slept well, too.  The doctor was still amazed at how well my left side heart has improved.  He said I looked good and even joked that he didn't hear my heart beating from a foot away.  I have more energy and stamina.  I'm sure it's from staying busy and active.

No word on the babysitter's condition yet.  I hope she's doing well.  She's a personal friend besides being the babysitter.  The boys are taking naps at different times today.  Ben went early.  He's probably good for two naps.  I kept Caleb up and we took a bath and watch a little Sesame Street.  This will help when they get up to stagger eating times.

After they eat we'll take a walk in the park.  It's 70 degrees and sunny.  The double stroller is on the back porch ready to go.  It's too heavy to transport anywhere, but it sure works for walking across the street to the park.  We're so lucky to live where we do.  People actually drive and park in front of my house to go to the park. I just walk out the door!

I'm going to try again to send pics of the boys. Still doesn't work. Help!  How do I do that?  I clicked on browse and then the pic, but it didn't show the image.

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New Toys

The time had come for new toys.  After babysitting full time last Wed, Thur, Fri and Sat and then again on Monday and Tuesday, I realized the poor kid needed some new toys.  Tuesday he was in to everything and Mimi was exhausted!!!    Soooo, a few new toys and some balls to kick around and we are all happy campers again.  Yesterday my daughter was off and we set out for Target.  She wanted to try on more clothes.  We did that last week and it was torture.  I don't like to shop anyway and when I go I want to look at stuff that interests ME!  But being the good, supportive Mom, I went along with it.  Thank goodness the boys are so good.  By the time we got home with the new toys and clothes, I was worn out.  And she still needed to go open a checking account.  (This was at 5 pm)  So I sent her on her way and played with boys until night-night time.  They go to bed early too, which is a blessing.

Today has been great.  This afternoon we'll go outside.  And my other daughter is home to help (sorta).  I may make it until the babysitter starts next Monday.  I hope the afternoon goes as smoothly.  I still have some tricks up my sleeve! hehe

Ben is wanting to play with big brother.

Caleb needs a haircut, but he loves his Mimi!

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A New Lease on Life

The babysitter is back in business!!!  I was sweating it out when I found out she wouldn't be back from Massachusetts until late Monday night.  I had a doctor appt on Tues and truly I was TIRED!!!   Erin was off Monday, so that helped.  Well, the babysitter called at 7 am Tuesday and said she was ready for Caleb to come join them.  Halleluia!!!  Erin took Caleb and I had Ben to myself.  We went to the doctor with no problems and he came home and took a 3 hour nap.  Today, I've been able to start my quilting project and he got a bath and is taking a nap now.  I feel like a new woman!!  I can  relax again.  I can go places again!

We called Austin Monday and found out Erin's cosmetology hours were approved and mailed Feb 7!  They (of course) sent it back to Tenn instead of here, even though she wrote a lette with it telling them her address here.  So much time wasted.  Anyway, now to get her back in school.  We hope she can start Monday.

I'm just so excited to get some of my life back.  Now we need to find Susie a car.  She FINALLY got a job and started yesterday. So she goes to school Monday and Wednesday and then works the other days.  Her car got totaled when some unknown person hit her car in the middle of the night.  We wouldn't get another one until she got a job.  We could share for the time being.  Now that everyone is out working or going to school I need a car too. So I want mine back.

I'm glad spring has sprung but it is already a little too warm for me in March.  I think it's an omen of another long, hot summer.  We'll see. It's supposed to rain and we sure could use it.

I'm going to go work on my quilt.  This is so much fun!

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A Full Weekend

It' been awhile.  I've been busy babysitting.  I don't have a car since my daughter's got wrecked and we wouldn't help get another until she got a job.  That happened last week, thank goodness.  So now we are actively searching.

Easter was fun at Grammy's.  We had 13 little ones looking for eggs.  It was Caleb's first that he could actually find eggs.  His were stuffed with goldfish, but all the others sure wolfed down that candy in a hurry.  It was cute.  Erin got off work so she could help him and that gave me a break.

Steve and I went on a retreat this past weekend with my ChristCare group.  It like a Sunday School class that meets on Tuesdays.  We stay at this ranch that is A-one, first class. We play games, drink, laugh, fish, read and eat.  Emphasis on the eating part.  The bluebonnets were out in full force and I have never smelled their lovely aroma like that.  There were herds of goats with lots and lots of kids everwhere.  They were so cute.  It was so relaxing, although a wee too cold on Saturday, so I stayed in and read and played games. 

 Friday night we had terrible weather in North Texas and just as we got to Cleburne my daughter called and was all upset because the sirens had just gone off and they needed to get my car into the garage before th hail hit.  Just in the nick of time.  Our cells kept breaking up and when she called back the electricity was off and the sirens were going.  They had gotten the babies from upstairs and had the two babies, the two dogs and two adults in the downstairs bathroom with no radio.  The cat refused to join them.  I can't much blame him.  All turned out fine except the power was off for and hour and a half and they didn't know how to get the car out of the garage.

The weekend was so relaxing and we were supposed to leave at 2 on Sunday.  Steve and I took the golf cart out for a little mosey and to look at the bluebonnets. The ranch is huge and we went a little too far.  We were going to be late back to the house and then the steering broke on the cart.  Thank God Steve had brought his cell along, but we didn't have any numbers for the people at the retreat.  So we called home, and got the babysitter to phone the list at home and leave messages.  Someone finally got it and called us.  There were enough landmarks to give them an idea of where we were and they came and rescued us.  It was a lovely spot.  Hills, trees, bluebonnets and you could hear a herd of cattle just over the hill mooing away.  I wasn't in any hurry to leave!

Erin wanted to go to the Edgefest concert for her birthday.  This is an all day concert and she wanted her sister to go with her.  They aren't very close and she thought that would be something fun for them to do together.  She arranged babysitting since we had that retreat.  She called yesterday at about 11 an said Susie never came home last night.  She does this periodically much to my distress.  So she said, "You know what?  I' m meeting some friends there, and it's a beautiful day and I'm going to have fun anyway!"  I was proud of her and she stayed until the bitter end at midnight.  The problem now is Susie STILL isn't home and didn't go to school today.  She has MY car and I'm pissed!  Not to mention disappointing her sister and wasting a $60 ticket.  This child used to be sooo giving and sweet and now all she can think about is herself.  I'm sick of it!  She's almost finished with school or I'd kick her out on her ear.  I just don't know what to do.  We have MORE than loving and understanding and this happens.  Well, she won't have my car anymore.  It will be a pain, but I will drive her to school and work and pick her up.  She'll have to be the one that's inconvenienced from now on.  Maybe she'll get off her rear and find a car.

That's all for today.  What an exciting few days.  I think I'll grab a quick shower before Bitty Bit wakes up.

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Stress

I have run out of potassium.  It's my fault for ordering from the online pharmacy too late.  Then I couldn't get it at the regular pharmacy because insurance had already paid for the mail order.  I hope it comes today.  I'm not taking my bumex except once a day and eating lots of bananas.

Tuesday I got a weird pain in my left shoulder and the last time I had that I ended up in the hospital, so I called he doctor and they wanted a chest x-ray.  So Ben (9 months) and I went and did that.  It was clear and I got some potassium from the doctor, but not enough for this week.  I keep thinking it will come in the mail today. They gave me some vicodin for the pain and later that night I started feeling badly like I did with the heart cath fiasco.  So I got on my oxygen and put my feet up and took a nap.  That helped.  I've never had a reaction to vicodin before and wonder why I seem to be having a negative reaction. All this after a wonderful 6mw last week where I walked farther than ever since being diagnosed.  I hope I don't go backward.

I'm feeling like STRESS is the issue here.  I would very much like to do something about it, but feel helpless to do so.  There are just many things that are beyond my control and I must learn to let go, but that is so hard.  We still haven't found a car for my 20 year old and she doesn't take any action to look for one.  That may be well and good, but it's MY car she has to use to get to school and work (or I have to take her).  She resents that and takes it out on us.  Which, of course, is totally unacceptable.  She pitched a fit last night, slamming doors (with sleeping babies) and threw her phone against the wall.  My husband told her to pack a bag and thankfully she found someone to come get her and she can stay there and get her to work for a couple of days. She is so full of anger and she is so not the beautiful child she was when she was younger.  She breaks my heart every day and doesn't think she needs any counseling.  So my hands are tied.  I try to say as little as possible and stay out of her way.  That's no way to live with someone you love.

Our wonderful brother in law is dying of cancer.  They called hospice today and are moving in with his son and daughter in law.   I want to call Linda so much but don't want to get in the way.  She has plenty of other sisters who are calling daily.  I'm married to the one brother and I feel I haven't done enough to support her and let her know. This is a huge cloud hanging over everything.

My sweet dog of 17 1/2 years is still here.  He's blind and deaf and pees on the floor by the back door every morning.  The baby runs over him with the walker and he  really struggles to walk.  When he sneezes his legs go out from under him and he falls quite a bit outside. He still eats and goes outside, but when do you make the decision to let him go in peace?  I tried yesterday, but the regular vet was out sick and the two vets that were there did not do euthenasia (sp?).  So he got a reprieve.  Then my 23 year old daughter started in on giving me a guilt trip that I can do without.  It's stressful to think about and stressful to see him this way and clean up after him.

Then as if that isn't enough, Erin's ex (the daddy of the babies) let her know he's planning on coming to Dallas next week some time to see the boys.  We don't have any problem with that as long as he doesn't have another agenda. That whole mess is another stressor.

If I had the day to myself I would go get a manicure and pedicure.  I would go look at flowers to put in my garden.  I would pamper myself and relieve some of this stress, but Ben is here and I don't know how long he would last at the nail shop.

On brighter note, tomorrow is the PH picnic and I'm looking forward to that.  My husband has agreed to go to help with the boys.  THey will  have a moon bounce that Caleb might just get a real kick out of.  Then we will need to go see our sister and brother in law maybe for the last time.  It's so sad.

I think Ben and I will get out of the house today since I have a car and it's not raining.  The outing will do me good. 

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My last entry got lost.  Just as I hit submit, the internet went out and I couldn't get it back.  It was long and I didn't have the energy to go back and do it again.  In my mind I dumped it all out and so I'll go on as if it were here.

We found a car for Susie.  Hallelujah@!!!!! We pick it up tonight.  She came dancing into the house on Sat nite and ran to hug my husband and me, telling us how much she loves us and how happy she is.  She finally realized she has a job she loves, she's almost finished with school and now she has the car.  Life is good.  She had my Mother's Day gift and was happy with EVERYTHING AND EVERYBODY.  We thought she was a little manic,  LOL, but I hope it lasts.

I took Beau to the vet today so he could take the train to heaven.  I'm crying a lot, but it was time.  Last night he went to the back door and didn't even wait for my husband to let him out.  He just let loose and peed on the floor.  Then the cat threw up (again!) and Maggie just runs around like a chicken with her head cut off.  Beau was  wonderful border collie/spitz mix  that we've had for 17 and a half years.  Fortunately I have Mr. Smiles (Ben) here to help keep my mind from dwelling on it.  We also get to go to Dr Torres' office at noon, so that will take up the day.

I realized as I tossed and turned last night that the word to describe how I feel is anxious.  Is it the ambien?? Do I have toooo many things to think about??? The past two weeks have been stressfull and I feel anxious a lot of the time.   I 'm not one to worry about things.  I usually do what I can to fix or delete the problem and move on, but I seem to be dwelling on things I have no power to control.  The only difference is the ambien.  I'll ask about it today, and go back to my restoril if need be.  All I want is a good night's sleep.  Is that too much to ask??? It got so bad last week that I thought it was my heart and called the cardiologist.  He ran an EKG and did bloodwork that turned out to be nothing.

There are a few  more loose ends to tell, but I have to go get ready for the doctor.  Maybe I'll get some answers.  I don't get to see Dr T, because I saw him last time.  THis is just for the bloodwork for the drug study.  We have a new nurse, Tammie, who is very capable and efficient.  It seems there's someone new every time I go, so it's always interesting to meet new people.

I'm thinking about all my PH friends out there with fires and bad weather.  We've had our share here in Dallas, but we live on a hill so the water can't reach our house.  Now, the backyard is another story!

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Feeling Good Again

Not much going on here.  It's supposed to rain every day, which we sure can use.  The drought is officially over and the lakes are up to their good level.

The weather has been so nice and sorta cool.  For May to be 76 degrees at 1:30 is extremely nice.  I actually got up and mowed the back yard yesterday!  We have a power mower and it was just sitting there on the back porch and I wanted the grass mowed.  I'm tired of waiting on other people and not having it look nice.  What I didn't know was that the power was a little toooo fast and I went racing across the yard and had to stop and pant.  Then turning it around was a chore.  Plus we live on a hill.  So I was really zooming down the hill with the power full throttle.  Later my husband said you can adjust the speed by not holding it completely down.  Now he tells me! LOL!  Oh, well.  It's done. 

 I had wondered if I would ever be able to do the grass again and now I have my answer.  Now if someone would just go get the edger from the barn I would  clean up the sidewalk area.  Then someone else could blow all the mess away and then I could plant flowers.  This cooler weather really motivates me because I know it may be my last chance to get anything into the ground before the summer heat hits.  At least the college kid next door is home and can help.  He mowed the front, but his knee is bothering him and he went for an MRI on it yesterday.  That's why the back yard didn't get done.  Maybe he'll get the edger out for me.

Oh well, I hear Ben waking up and we need to trek to WalMart.  That will probably be all I'm good for today.  The jaunt will do us good.  I'm thanking my lucky stars that I'm feeling so good again.  Sleeping well sure helps.  I'm taking the xanax and two ambien.  It makes all the difference in the world.

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Still Feeling Good

Well, with summer and school out, the babysitter had an opening for Ben for Friday.  I took advantage of it yesterday and enjoyed myself.  I couldn't decide whether to go to Canton (giant flea market), go to the pool at the club or work in the yard.  I decided on the yard because I'm jealous of the flowers my neighbor planted last week.  With all the rain they are growing beautifully.  I also was frustrated with the trimming (or not) that my husband does around the lawn.  He edged it, but it had been so long it didn't look like it and some of the runners were still there.  And then there was the edge around the flower bed.  I couldn't manage the weed eater, so I remembered the hand clippers my daddy use to have.  He was crippled and did the edge sitting down with those clippers.  So I went and bought a pair and my yard looks so good.  I was dripping wet and had had enough, so I came in and took a shower and cleaned up. 

Then I wanted some flowers, so I went and got some orange for the front to go with the yellow day lilies. and I bought pink for the backyard for my purple/pink bed.  There was a huge thunderstorm on the way so after Erin got home I went back out and planted the flowers (a whole flat).  They look great, but I was sopping wet again and had to shower and clean up again.  It wasn't that hot but I guess the PH or the meds made me sweat like a sauna. 

It's nice again today (80 degrees), so I took the boys to the park.  Caleb loved it.  Of course, being a boy, he found every puddle to splash and stomp in.  The little duck to sit on and ride was cute.  I really must remember to take the camera next time.  It's a long block to get there, but it felt like three, so I called my husband to come get us.  I just couldn't walk back and the sun is finally out warming things up.  Then they got baths and now are napping.  Everything would be great if I didn't have to do anything else for the rest of the day! I'm pooped!  But it feels good to have a little energy to do some of the things I want.

Our brother in law is still hanging on, bless his heart and I feel so badly for our sister.  This is the hardest thing for anyone to have to do, see your loved one dying and just wait. I understand totally how Nancy feels.  It is such a helpless feeling.  Maybe I can get off the xanax once this is all over.  I just get overwhelmed by all that is going on without it.  The strangest thoughts enter my head and won't go away.  It's so weird. I think those Fridays off are going to be a real help.

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Another loss

My sweet brother in law passed yesterday morning after a valiant battle with kidney cancer.  This is probably the hardest thing our family has ever had to go through.  I sure will miss him. I'm so glad we have such a huge and loving family to help deal with this loss.

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Busy Week

This has been a busy life for the last week.  Our brother in law passed Sat a week ago and the memorial service was last Sat in East Texas.  The service was nice and he wanted a party afterward, so we drove to this little wooden cabin in the middle of the country that has a bar, two pool tables, a front porch and screened back porch. Oh, and a loft.  We had so much food and they had a DVD picture show and we all cried a lot and drank Schlitz (yuk!) beer in his honor.  We'll sure miss him.  Our family alone took up a fourth of the church.  They have lived at their lake house for five years and had a LOT of friends there, plus those that drove in from Dallas.  so we had a great turnout.

This has also been a busy week for doctor visits.  My husband had a colonoscopy Tues, I had the cardio Wed, the babies finally got a check up and shots through Medicaid Thurs, and I saw my eye doc on Friday.  Then the memorial on Sat and Sunday Erin graduated (yoohoo!) from cosmetology school.  She actually finishes in July but we can see light at the end of the tunnel!!  Today I had my study visit to Dr Torres' office for bloodwork.  My head hurts and I'm going to go take one of those nice afternoon naps.  The baby is down and I have until he gets up or 4:15 to go get Caleb, which ever comes first!

The stress is slowly easing but thank God for Xanax and Ambien CR.  This, too, shall pass....

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I need a Road Trip!

Yes, I'm getting cabin fever and need a road trip.  We usually go to an East Texas lakehouse with friends, but since we have the babies, there would be no quiet room for napping.  When we go it's like Big Chill weekend and its a blast.  It's also weird having the 4th on a Wed.  Kinda wrecks the long weekend. 

Will it ever stop raining????  Personally we just have a flooded back yard and a huge limb snapped off the tree last night, landing on the patio cover.  Too bad it didn't do more damage, we might have gotten a new cover out of it. 

Yesterday 21 members of the family helped our sister-in-law move back to town from their great lake house.  It's sad to have to leave there, but her support system is here.  She tried it for a week and decided to move back.  Fortunately, we only had to help on this end and that saved driving two hours there, packing, loading and coming back here to do the same.  We just helped on this end.  Bless their hearts, thry had a big U Haul, an 18 ft trailer with a tarp and the only trailer without a tarp got here first and just as they started unloading, the bottom dropped out of the sky.  We have had TORRENTIAL RAIN  for days and this was an isolated deluge right over her house.  The bed is history and the couch is drying.  As I couldn't do much, my job was to dry boxes and open them to make sure stuff was dry or needed to come out of the box.  And they were all stacked in the dining room, needing to be moved since the table would be coming later.  Somehow it all got moved.  There is no order to anything so Ben and I will go help her unpack this week.  They did get the living room somewhat orderly so we could all eat pizza and drink beer.  There are some things one must do when helping people move.  It was nice to see so many of the family there. 21 people is a lot.  I think we have a total of around 57, but many had to work, or had babies to take care of.

Erin quit her job last week and it has been nice have some time off from babysitting, but when they live in your house, you never really get away.  And facing next week, the babysitter is taking off july 6 - the next week.  I'm really nervous about having them for so long by myself.  Ben is getting heavy and is not as easy to care for these days.  A college friend of Susie's needs a job and I think I'll call her and get her to come help.

But what I really need is a road trip!!! I found out my brother's family is down at the beach and I would be there  in a heartbeat if I didn't have the boys.  The cabin is VERY rustic (built in the 40s) and hasn't been updated except to patch the roof damage from hurricane Rita. It's not conducive to babies.  And we only have one set of friends in Houston that I would feel comfortable bringing the boys and they've said "come on!", so why are we hesitating? Beats me!

Erin has applied at a salon and may be working soon on the weekends again, so now's the chance.  I think I'll call and arrange it.  Next weekend we could slip off and leave everyone else here. And if she does get the job we'll take the boys.  That's a plan.  Maybe it's not raining as much in Houston.  Rain, rain, go away!

Another thing, my eyes are going badly.  Since it's raining and I can't do much, reading is a pleasure I really enjoy.  But lately my bad eye is getting worse and I have an appt for a cataract doc, but couldn't get in until July 18.  The more I read, I get headaches and it's really annoying.  But there's nothing I can do.  It would be silly to get my glasses adjusted and then have cataract surgery.  I did find one that is compatable with my cardiologist if needed.

The other thing bugging me is losing my friends.  Staying home, whether it be with PH or babies or both doesn't give me time to work on my relationships with others.  I am a people person and I feel more isolated every week.  I don't even get to see my next door neighbors much and they have been our best friends for years.  They even got to go off to their lakehouse, but didn't invite us.  I think I am getting very dull and it's scary to have a day off and no one to "play with."  It's my own fault, but I miss the friendship I had at school and elsewhere.  I must get on the phone and get reconnected somehow.  That's a goal I can aspire to. At least the phone is better than nothing. 

This is long and rambling, but that's how my brain works these days.  I just needed to get some thoughts down and get a plan of action. Thanks, I needed that.  someone to talk to even if it's myself! lol

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PH Life Lesson

Well, I finally got that road trip weekend before last.  We went down to San Antonio for Steve's youngest sister's birthday.  She was 40.  Our neice arranged it and we had three other sisters and husbands.  She was totally surprised and all went well.  Except for the trip down there.  EVERYBODY and their cousin was on the road between Dallas and SA.  It didn't help that we were getting pounded by torrential rain in Waco and Austin.  I heard it rained 9 inches in New Braunfels and places west of SA were flooded.  What should have been a 4.5 hour trip lasted an incredible 7 hours.  We ended up on surface streets after we got there becaused the freeways were totally stopped.  We finally made it and the rain held off everytime we were outside.

After dinner the first night Melissa wanted to go dancing. Hah! I went along to be pleasant.  They actually found a place on the riverwalk with 70's and 80's music.  Animal House was playing on the big screen with captions so I was intertained.  It really turned out to be fun and we stayed quite late.  As I was "seat dancing" standing up, (not moving my feet), a girl came up to me and said she was inspired and wanted to still be dancing when she was my age!  LOL!  That made my night!

The next night wasn't so good.  They picked a restaurant "about 4 blocks" away and we didn't get good directions.  Although it wasn't raining it was about 88 with 150% humidity.  We started off early so I could take it slow.  I'll never do that again.  We ended up backtracking and not knowing where the place was and we were too far from the hotel to walk back.  We finally, agonizingly made it.  Sweat was dripping, the music was deafening, it was too dark to see the menu and I was PISSED!  so I dried off and just sat.  Even the margarita was awful and I sent it back! The whole time I was walking it felt like a sword had been driven through my back to my front.  Of course, we took a taxi back.  My sweet brother-in-law had even gone looking for us in a taxi.  I learned my lesson about trying to keep up and walking too far in terrible humidity.

Things like that just bring home the reality of this crummy disease.  I want to get along and go along, but I just can't sometimes and it's a bummer.  No one would have thought a thing about it if we had gotten a taxi in the first place.  I just thought I could make it.  My fault.  I hope I didn't ruin it for anyone.  They seemed fine and understanding about the whole thing.  I'm so lucky to have such a great family. Lesson learned.

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Letairis approval

I'm real excited about the Letairis approval.  I've been on the drug almost two years and I am so thankful that a pill once a day maintains my way of life.  I'm grateful that I don't have any of the other diseases often associated with PH and my age.  I'm also relieved to find out yesterday that my insurance will approve and my co-pay is only $35 a month.  It could be so much worse.  I'm happy that there is another option for my PH friends out there and I hope it works for them.  Of course we all still pray for a cure or even better medicines to aleve our symptoms. But I tell ya, this Texas summer heat seems to have spread all over the country and I'm so grateful we've had a mild summer.  This heat and humidity literally takes your breath away!  Errands must be run before noon and I still get cabin fever.

Erin finally finished school last Friday and today she just left to take the written part of the state board.  Then she can take the practical.  She went job hunting yesterday and was pleased to find at least three salons that need apprentices.  She was called in at 3 for an interview as soon as she got home from hunting.  I'm relieved that it seems like it will be easy for her to get hired fairly quickly. It will mean more hours gone, but I think she can make enough to pay for both babies to go to the babysitter and that will help me.

I'm just taking it a day at a time and trying to keep stress at bay.  I'm also trying to wean myself off the Xanax since much of my stress has disappeared.  I've heard that is difficult. We'll see.  I also am going back on Prem Pro to try to alleviate the body temp thing.  There are about 2 days a week where I simply can't regulate my body temperature.  I stay freezing cold for 2 hours and then have hot flashes.  It's miserable.  i hate taking so much medicine, so I'm trying to cut down as much as possible.  That leaves only 9 pills twice a day!  That's just ridiculous, but it's where I find myself and one must do what one must do! Ah, the joys of being chronically ill. 

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Dr Visit

Hi there, orange print for a hot day in August.

Had my last study visit yesterday at Dr Torres' office.  Tammie was my nurse and I'm officially released from the study.  I took Ben and by the time I had to do my 6mw test he was fussy.  Tammie is such a trouper.  She pushed him in the stroller while I did my walk. I walked 450 meters, which is almost as good as last time.  the thing that gets me is how easy it is to walk in air conditioning and how absolutely horrible it is with heat and humidity.  The office walk makes me look like the peak of health.  Everyone thinks Ben is mine and I must not be on O2 or be really sick.  I guess that's a compliment at 53.  But the day to day grind is what is reality.

I discussed my inability to adjust my body temperature sometimes and even had a hot flash while talking to Dr. T.  He's so funny, he grabbed a clipboard and stood up and started fanning me!  The nurses thought it was a hoot!  And he kept it up until it passed.  So sweet.  He also looked at my swollen lymph node and said it had to come out, but would NOT tell me what it could possible be.  He did say it may account for the temp changes.  SOOO, they're scheduling my 6 month cardiac MRI and a biopsy the same day.  Won't that be fun!  At least he held off on another RHC, thank goodness.  Other than that I got my standing order to get bloodwork done monthly at a location nearer to me and three hours later Ben and I were out of there.  I'll sure miss seeing them every month.  They've become my new social club. 

Erin takes her practical portion of her cosmetology state board on Friday.  She had a great interview yesterday and the woman offered a full time position.  But Erin wants to continue with school so she can become a teacher and work part time.  We need money to cover babysitting.  What a dilemma.  In the long run what she wants to do is better for her career, but another 6 months of school and little money is a challenge.  The boys' daddy said he'd start (finally) paying some support, but I'm not holding my breath.  I think I'll take Corey's advice and go take a nap.  Things always have a way of working out and my worrying about it won't change a thing.;-)

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Update

I just got back from my echo.  Dr Torres had ordered it and didn't discuss it with me, so I don't know if he heard something amiss or it's just time to do another one.  I had my CMRI last week along with a CT scan of my lymph nodes to see why one is enlarged.  I'll get all the results back next Wed.  I'm thinking of taking my husband or someone with me.  I usually go by myself.

My hot flashes and body temp thing is much better.  So I don't know how long it takes to start working and my gyno visit got postponed until next Monday.

It's always something, as Gilda Radner would say.  Now I'm really having trouble seeing.  My eyes are crap anyway, especially my right one.  I got new glasses, but when I drive I can't see! That's NOT good.  I went back yesterday to recheck them and they were off about 3 mm.  Today I still can't see and I was even having trouble reading.  I'll really get depressed if I can't read.  Also, every day after 3 my heart makes its presence known.  It starts pounding and I feel like there's a vise on my chest.  Sometimes there's stabbing pain in my shoulder blades, sometimes my sternum.  I can't wear a bra for long because it begins to feel like vise grips.  The echo tech wouldn't tell me anything, but I took it as a good sign that she didn't go running out of the room to get someone to come look at it!  Both babies are at the sitter and I still have two hours to myself.  I can't think of anything I want to do, mainly because my eyes are bothering me and I don't want to spend any money.  So I just came home and wrote in my diary.  I'm frightening myself at my dull exsistence.

On a positive note, I am covering library books with plastic and getting them ready to shelve for my next door neighbor, who is a school librarian.  But of all times, she fell on a tree root Monday morning and broke a bone in her foot.  This, the week before school starts and she was just named Library Director for her district and had to give an in-service today.  Bless her heart, she doesn't know how to say no and she's supposed to be in some skit tomorrow for the convocation.  I told her to tell them she's OUT, she broke her foot!  She's also a clutz at the crutches.  The babies and I went out and picked her up yesterday.  She hadn't had any pain meds all day and was lugging two heavy bags.  I took them from her and got her home, but my chest was hurting so bad and I still had to get the babies out of the car and up the stairs and ready for bed.  She said were the blind leading the blind.  Of course NO ONE, NO HUSBANDS or children were around to help! I survived and figured if I was dying, the echo would show that today.  No such luck.  I'll just have to wait it out.

I DID run into my cardiologist in the elevator and told him I had had the CMRI and today the echo.  He said he'd  watch out for them and take a look.  I also told him I was suffering after 3 o'clock, so maybe something good will come from that.  I hope so.  I just don't like not being active when I don't really feel or look sick.  Is this is good as it gets?  Can things improve?  Am I just whining?  I know others are much sicker.  I'm just sick enough to keep trying to live my normal life and then feel crappy. Also, the only time I haven't worked is during a well deserved summer break.  I think after two years and with school starting it gives me a feeling of uselessness.  I know I've been looking after the boys, but Ben is gaining weight and still not walking, so it's getting harder to do.

I still haven't done anything about contacting friends that have disappeared.  Neither has my husband, so our social life is nil.  I just don't have the energy to deal with it.  All of this feels like depression.   I took depression meds for YEARS and got off them about the time I got PH.  I have felt so upbeat for two years and now this comes along.  It must have something to do with energy level and seeing, oh, and feeling tied down.  Anybody would be depressed.  I just don't want to take any more medicine if I can help it.  And if I recognized the problem I should be able to do something about it.

As usual, I'm rambling and having a pity party.  I'm outta here.

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Bummer

I feel like crying.  I STILL can't see, even after going back to the eye doctor.   I can't see road signs and I can't read the menu on the TV screen and it's VERY difficult to even read my book.

The hospital called today and Dr Torres ordered a stupid biopsy of that stupid lymph node. (Can you tell I'm upset?)  She starts with "it's a 9 am procedure, so be there at 7 (with rush hour traffic in Dallas), don't eat or drink anything after midnight, stop my warfarin on the 26th, have someone to bring me home and I'll be there 2-4 hours after." I said, "Wait a minute!!! What's involved?"  And she said I'd be put to sleep!  I asked if they knew I had PH and she said be sure and tell my nurse that morning!!!!!  Boy, Dr Torres is in hot water this time!!!

He won't tell my what this could mean.  The last time I had a RHC my neck hurt so much I ended up fainting.  This biopsy, of all things, is the most upsetting of all the things I've gone through.  I was already feeling down about being chronically ill and this is just icing on the cake. It makes me want to cry.  I'm tired of putting up a stiff upper lip.  I'm going to throw this out to my web friends and see if anyone else has had this little hitch in the road.

On another note, I'm going to order a couple of books off the recommended list.  I'll let you know how they are.

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