Patient Diary -- Ruby Lewis

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 Thanks Ruth

I am a little scared about doing this.  Putting you life out for everyone to read about is kind of a scary thought.  My caregiver, Becki, is the one who has really been encouraging me to do this.  It's easy to isolate yourself when you have this disease.  It's easier than having to explain all the "why's" everyone has. 

I am 37 years old and live in Los Angeles, CA.  I've lived here since I was 9.  I am divorced and have 2 beautiful children.  Thomas who has just turned 14 and Dana who has just turned 12.  They are truly the wind in my sail.  They keep me motivated to fight.   They live with their dad.  I see them every other weekend and whenever I can.  Giving them up is the most difficult choice I've made in my entire life.  But I reached a point where caring for them full time was impossible and just didn't seem fair.  They are adjusting well.  I do love them deeply.

I was diagnose in with PPH in March of 2002 at Torrance Memorial Hospital via an Echo with bubble study, followed shortly after by a RHC.  I had never heard of PH before.  And soon after found out that several family members had the disease and had passed from it.  I was pretty scared.  I had a PCP that was on the ball and his persistance led to a quick diagnosis.  My first noticable symptoms were in Nov. of 2001 although I really thought I was just out of shape.  After all I did weigh 260 pounds.  I kept exercising and things progressively got worse.   I had started a new job in Nov. of 2001 with a Worker's Compensation/General Liability Claims Department for a large department stores and had started running the steps on a daily basis.  On February 14, 2002 I almost passed out at work.  Went to see my PCP and the tests began.

In April of 2003 I was referred to Dr. Shelley Shapiro at USC University.  What a blessing she has been.  Well she and Glenna Traiger the queen bee nurse.  I love them both.  Between the two of them I left the office that day feeling like I at least new what was wrong with me.  Not only that I new I wasn't alone anymore.  

I'll write more later.  Getting tired. 

I don't like days like this.  Days where breathing is a chore.  Exhaustion seems to set in so easily.  I did find out that the cultures they drew from the Hickman are negative after 4 days.  Keflex is working well.  I feel sick to my stomach.  I'm not sure what's worse the nausea or the SOB.  Anyway it is good news.  Thank God I don't have to go through the oredeal of having the Hickman removed.

I knew that this would be difficult but not like this.  Yesterday was an emotional day.  With as little as I wrote.  It's a good thing though.  I think I'm long overdue for some emotional healing.  It's hard trying to hold everything together so you don't upset everyone.  Holy cow if they only knew. 

Needless to say last year was not a year I would have ever expected to have to live.  PPH. Found out about all sorts of drugs.  Coumadin, Digoxin, Prevacid, Ameloride, Norco, Zaroxolyn, and my most favorite Potassium.  The lack of control with the Potassium.  Who would have thought.  I've been in the hospital so many times that each visit ended up marking some holiday or celebration.  The most difficult was missing Dana's 11th birthday.  I found out what depression was.  Everything seems so jumbled together.

I remeber going through a phase where I questioned God as to why. Why me?  The response, why not me?  He has preapred me.  I've been through a lot of things in my life.  Things that would prepare me for this time in my life.  But I still wonder what His purpose is.  I know there is one.  Jer. 29:11 tells me that.  I've been a Christain since I was 9.  Haven't always made the right choices.  As a matter of fact I've messed up quite a bit.  Hurt plenty of people along the way.  But that's life.  You live and you learn.  I've learned plenty.  How to treat people and how not to.  But then again Christianity isn't about being perfect.  If I were capable of perfection I wouldn't need a Savior.  I love when people ask me why I look so peaceful.  I know then that they are seeing Christ in me.  Cause I'll tell you a lot of the time I don't feel so peaceful. 

I struggle with the urge of just stopping the stupid meds just like everyone else does I'm sure.  I wonder if the pain is worth it.  I wonder what's gonna happen when the kids aren't reason enough to keep pushing on.  But I do push on.  For now anyway.  Don't freak out, I'm ok.

I have to say that I've met a lot of wonderful people through PHCentral.  Alma, Alex, Mr. Dr. John, Jackie and Sue just to name a few.  You guys are great at lifting my spirits.  It makes me sad that this disease is affecting our lives one way or the other.  But I'm glad I'm not alone.  I'm glad that there are people that understand.  People that I don't have to explain everything to.  Love you guys.  So thankful for you.

And then there is Becki.  I'll have plenty to say about her later.  But what a God send she has been.  I love her dearly.  I live with Becki and her hubby Tim.  At least for now.  There home is close to Dr. S.  Becki is my caregiver.  Hard to say that cause she has been my friend for so much longer.  We've been friends since just before Dana was born.  We've had our ups and our downs.  But here we stand.  Strong and together.  She's with me at the hospital whenever I need her whatever the cost is to her.  She is a wonderful encourager. 

I love the rain.  It rained here last night.  Even got a little thunder storm.  I do mean little.  Nothing like the storms in Chicago when I was little.  It was enough to bring back a lot of good memories.  Like when we use to go out and play in the rain and I remembered a few times when the fire hydrants would mysteriously break on the hottest days of the summer and we'd play in them.  I loved living there.  Things weren't always good but boy do I miss it.

I talk to the kids a few times a week on the phone.  But I have noticed lateley that Tommy has been making it a point to call every night.  He just wants to make sure I'm feeling ok.  I think he is scared.  Sometimes I wonder if kids know things we don't??  I wish I could explain the relationship I have with them.  It's special.  We talk a lot about everything.  Literally everything.  It kinda puzzles some people.   A few diffiult things have come along.  We've handled them pretty well.

This disease really does effect everyone.  The kids and I have had a lot of discussions about it.  They've asked questions that I haven't enjoyed answering.  Mom are you dieing?  Mom am I gonna get PH?  What are we gonnna do without you? It isn't fair mom why is this happening?   They want to know why I can't play with them like we use to.  They aren't easy questions to answer.  But I answered.  Each one as they came.  We had a lady at our church die several years ago of cancer.  She never told her kids how ill she was.  Her kids are still angry with her.  I think it's important to be honest with them. They know the answers anyway.  It gives them a chance to learn to live without regret.  They don't leave without saying "goodbye", "I love you mom".  It also makes it possible for me to say things to them and they understand why I'm telling them now.

I remebered back when I was diagnosed thinking "how do you tell people something like this"?  There was no easy way. You just kinda blurt it out.  It was awful.  I have one person in my life who to this day doesn't believe "I'm that sick".  I'm sure we all have "those people".  Kinda makes you wanna shake em.  What do they think, we enjoy o2 tubing coming out of our nose or a tube coming out of our chest?  Sounds like a party to me.  I enjoy taking 47 pills a day. I do it for kicks.  YIPEE!!  I really like the looks I get when I put my Handicapped persons placard in the window and park and you get the "what's wrong with you" look.  Then the 02 tank comes out and they drive on.  I actually kinda giggle now.  It use to embarass me.

I'll be going down to see Dr. Chanick in San Diego soon.  Dr. S  is hoping I'll get onto a nitric oxide study.  My appointment is the 29th of August. It's a cosultation appointment.  I guess to see if I meet protocol for the study.  I'm a little scared.  I guess more afraid that the nitric oxide won't help then anything.  Nothing seems to be helping much.  Breathing is better today than it was yesterday.  I'm happy about tha

I really dislike the roller coaster ride.  The back and forth feeling good and not feeling good.   I know I should be greatful for the good days but when it's one day where I actually feel decent and the next day I feel horrible it's just to much to handle sometimes.  Yesterday I had a wonderful day.  I went out to dinner with about 6 woman from Becki's church.  They are saying goodbye to their friend who happens to be their pastor's wife.  It was a great time just to kick back and be social.  I love talking to people.

Today however is another day.  The ever present nausea is in full swing today.  Along with a raging headache.  I get sick of taking all the medications that come along with this.  Having to throw in extras on days like this doesn't really help the stomach either.  But I do what I must to "just get through" .  I look for distractions.  Worship music helps a lot.  Sometimes I jump into one of the PH chat rooms to see if any one is there. 

Usually it turns into a time of "prayer".  I put that in quotes cause it's more like a fighting match.  I go through all the usual why's, how much longer do I have to do this, are You listening, do You see me crying,  and the ever desperate plea for Him to reveal His purpose because maybe then I'd understand. I really am like a kid throwing some kind of temper tantrum cause I'm not getting what I want when I want it.  Then of course the sense that He gives,  Yes my child I am here, just as I always am.  Trust Me.  Then the Peace comes in the middle of the entire "not feeling good" moment.  I still fell yucky but the desperation of the whole things settles.

Glenna emailed me yesterday to tell me that after 5 days the cultures they drew are still negative.  I have to finish the Keflex.  Then one week after I finish if the nausea is still there I have to back to have more cultures drawn from the Hickman. 

One of my babies birthdays are coming up.  Little Deziree's.  My moglie girl.  I named her that because when I was babysitting her she use to cling to me like a little monkey.  I didn't really have to hold on to her she just kinda hung there.  She reminded me of the little boy in the Jungle Book.  She is the sweetest little thing.  She is turning 3 years old.  I started watching her when she was only 8 weeks old.  I had my little day care that happened to be ALL girls.  I loved them very much.  It was hard when I had to walk away from them.  The disease had really started by then, before I really knew anything was wrong.  I was just to tired.

I started my job at Robinsons-May in the claims department in November.  I'll save that for next time.  What a blessing that job was.

I guess I need to back up just a little.  In July or August of 2001 is when I started seeing some things that began to concern me.  At that time I had a small daycare running at home.  I had 4 little girls all under 2 at the time.  Kids have always been a part of my life.  Started babysitting when I was 11.  I was a professional nanny for several years after high school.  Babysat for friends after I got married.  After the divorce I picked up the child care stuff again.  You can say it was a passion.  I absoloutely loved it, and I was really good at it.  Anyways, back to August.  I obviously have a lot of patience.  It wa disappearing.  My energy was being zapped.  I was falling asleep if I sat for any length of time.  The girls were in danger and that bothered me even more.  I did everything I could.  Started going to bed earlier and since I was overweight started watching what I was eating.  Nothing changed.  Instead of loosing weight I was gaining it.

I went to see my PCP in August.  He told me not to give up on trying to loose weight.  I had a complete physical at that time and of course nothing seemed to be wrong.  By October, physically, I was just not doing well.  The SOB had started up.  I mean to the point I noticed it.  Once again I attributed it to being overweight and out of shape.  But I started contemplating doing something else but didn't know what.  Deziree's mom had left on maternity leave and when she cae back in October told me they were moving.  So I went to Robinson's-May Company and applied for her job.  I got the job.  A claims assistant for their Worker's Comp./and General Liabily Claims office.  I starte my new job on Nov. 26.  I had a friend who was already working there.  We decided to start walking the steps.  I'd get to the top of the steps and would feel SOB and my heart was pounding.  We'd joke with each other about stuff.  "Get your big but up those steps girl".  We were both overweight.  So the teasing went both ways.  At least we laughed while we tried.  By Jan. she could take the steps without a problem but it was just getting more difficult for me.

On Feb. 14, 2002 I walked into the office and almost fainted.  I immediately went to see my PCP who had me do a short walk the checked my o2 SAT and it had dropeed to 87.  He started running tests.  An echo was ordered by The 21st of Feb.  I remember going to the ER for SOB and chest pain in March (before I was diagnosed or had ever heard of PH) and some doctor came in and told me I could have a lung transplant.  I thought "what the heck for".  Didn't think about it.  I was admited that day for CHF.  Stayed for 3 days.  I was released taking Lasix, Digoxin, and a Potassium supplement.  I think I new something was wrong cause I didn't ask why.  Within a week of that.  I new I had PPH.  Still wasn't sure what it was.  I remember having an echo with bubble study but still nothing was said.  I had a RHC in March.  I was half asleep.  But I remember the doctor who did it (not Dr. Shapiro) seeing my pressures and flapping around the Cath Lab like someon had just shot him in the leg or something.  I heard him tell the to call Dr. Shapiro at USC University.  I think I conked out after that.  But I remember being very frightened after seeing his reaction.  As he wheeled me out of the cath lab, his comment was you have PH, if you loose weight it will go away.  What a crock. 

Saw Dr. S in April started on Tracleer.  I've already written the rest of the story.  So here I am today.  Not feeling any differently then I did a year and few months ago.  Praying and hoping that something will work.  So we'll see about the Nitric.  Then Viagra I suppose.  I'll keep hoping and pushing forward. 

As I sit here today, the CHF is kicking in.  I have gained several pounds over night.  I'll do what I am suppose to.  Take the extra dieuretic and pop a few more potassium.  Use the stuff they have given me for nausea so it doesn't get out of hand.  And if all that doesn't work, it'll mean another trip to the hospital for a few more days of IV Lasix.  But I'll cross that bridge when I come to it.  I wonder if what I do is denial or just trying to stay positive?  I guess it doesn't matter as long as it works. LOL

Well, it's off to get the kids for the weekend.  I look forward to our visits.   They are wonderful to be around.  It's wonderful.  I think a little bragging is in order.  I love it that other people truly enjoy my kids.  There are a few people in our lives that have children that are grown.  They "borrow" my kids to go to Universal Studios, the movies, just to hang out.  It's not something that has just begun since my diagnosis.  It been this way for years.  They are both very well behaved, affectionate, respectful (of course they have their moments), and love being around other people.  I think it some kind of "success" measurement.  We all enjoy our own children but when others are blessed by them it's awesome.

I'm feeling a bit better than I was yesterday.  Some of the edema is gone and I lost about 8 pounds yesterday.  It came on quick this time.  But at least I'm able to control it a bit this time.  Hopefully by Monday all will be back to normal.  Now it's just getting through the weekend.

I just got home.  I am exhausted, but the kids and I had a wonderful weekend.  We stayed with friends that we haven't seen in quite some time.  We watched some movies, shared a meal and just talked.  Like I said, I love talking to people.  I did get to go to my church this weekend.  I miss my extended family very much.  But we have fun when we do see each other.

The kids hate going back to their dad's.  It's hard feeling like I'm rejecting them over and over again.  That isn't how they feel.  It's just how I feel.  Dana was more clingy than normal.  Tommy a little more protective than usual.  They can tell when I'm not feeling well.  My breathing gives it away every time.  It's the one thing I just can't hide from people.  The edema isn't going away like it's suppose to.  Denial is setting in.  I'm suppose to go to have blood drawn which means the possibility of running into Glenna.  She'll take one look at me and the big question "do you need to be in the hospital" will be asked.  So rather than go through that I'll put it off for a couple of days until I can get my mind around another hospital trip.

I don't know why I procrastonate but I do.  I hate being in the hospital.  It seems like such a waste of time.  I go in, I get better, I come home, and the whole thing starts all over.  I guess I do it hoping that maybe the next time I go in I'll come out and won't have to go back for a really long time.  It just doesn't seem to work that way.  I'm so frustrated with the whole thing.

It's just life.  I do the best that I can to cope.  We all cope differently.  Poor Becki just gets on the roller coaster with me.  She sits and holds my hand as we both scream down the hill.  We have as much fun as we can while were going down that hill though.  Gotta have fun!  Gotta laugh!  It's the way I cope.  The smarty pants comments.  It's just me.  A new coping skill that I inherited when I started down this road.  It helps.

Time to go lay down. It's been a busy weekend.  I am completely and totally exhausted.  But, I had a great time getting there.

Went with my mom to the cardiologist today.  They are checking her for PH.  It takes me back a little.  She goes for an echo tomorrow as well as a chest X-Ray.  Then she will go see a Pulmonologist for the usual breathing tests.  Hopefully everything will be ok.  She is 74 years old so it could all just be her age.  At least that is what I am hoping.  She's already says if she has PH she won't do anything about it.  She says she is to old.  I guess I understand her logic.

Since PH is familal in my family, I wish all my brothers and sisters would get checked for it.  But the docs don't seem to agree with me.  I guess they have to justify the tests.  Mom is having symptoms.  The last 3 months she has been having SOB and chest pain.  She's a pretty active 74 year old and that's come to a screaming halt.  She's scared.  I just want to know what's happening.  I concerned about her.

I've been thinking a lot the last few days about my life.  There have been bad times and really bad times but I choose to remember the good times.  Fortunately I'm able to block things out that I don't want to remember.  I have the most fun remembering the silly things. Things that other wouldn't understand why I thought they were fun.  I think it has more to do with who I was with rather than what was actually happening.  For instance,  I have a friend named Ruth.  She's an incredible woman.  A great role model. I want to be her when I grow up.  LOL  Every time she and I go anywhere we get lost.  Her husband prepares the best directions.  They are door to door directions.  Pretty specific.  But we still manage to get lost.  I loved getting lost with her because it didn't freak her out like most people.  As far as I was concerned it was more time I got to spend with her.  She's walked through a lot of stuff with me.  But those times when we were lost were the funest.  It's good to laugh.  Especially when the person with you laughs along.  I love her very much and truly treasure our friendship.

Talked to the kids.  They are having a wonderful summer.  They went swimming today and ran into one of "my babies".  She recognized Tommy and Dana.  Dana played with her in the kiddie pool for quite a while.  Sandra asked, "where's wooby".  I love that she remembers me.  It makes me feel good.  I loved watching them.  It's hard investing so much time in someone elses kids with you whole heart and then having to say goodbye.  It makes it all worth it when they remember you. 

It'll be another busy weekend.  Going to a birthday party on Saturday then out on a friends boat Sunday evening.  Also going back to church on Satruday evening.  I'm sure I'll be exhausted but it'll be worth it.  One of my friends, Cathy, and her family leave to go on vacation Monday.  They'll be gone for 2 weeks.  I'll get to see them at church.  It'll be nice to be able to see them off.  I don't get to see to much of them.

God has blessed me with some really great friends.  The kind that stick by you no matter what.  When you find out you have a terminal disease, you really gain some perspective on quite a few things.  You realize what really is important and what isn't.  I can't remember the last time I was really angry about anything.  It just isn't worth it.  You remember to say I love you to the people you love.  You value and treasure every moment you have with them.  You concern yourself with the things you can change and the ones you can't you learn to let go of immediately.  I'm glad that I serve a God that takes the time to be concerned for me. 

Well, unfortunately, I will be admited tomorrow morning.  I'm in CHF.  Again.  I hate it.  But I'll push forward for now.  I can't tell you how badly I want to quit.  It's hard.  No one ever said it would be easy.  I think I've done a fine job of aggrivating the living daylights out of my doctor.  It's ok.  I keep her life interesting. LOL

Today, I'm going to Long Beach with Beck and Tim.  One of their friends has a boat.  We're bbq'ing and taking a ride in their boat around Long Beach Harbor.  I'm looking forward to one more adventure before tomorrow.  Hopefully I do ok.  I just plan on going and enjoying myself the best that I can. 

So, I'll be in the hospital at least til the end of the week.  I plan on taking the laptop with me. Whether it ever gets turned on or not, that is another story.  I just want to get in and get out.  I'm suppose to have the kids next weekend.  I hate missing a weekend with them.  It aggrivates me that this effects them.  It aggrivates me that it effects everyone that cares about me. 

Went to church last night.  A lot of people there.  It's difficult to watch the concern in their faces.  I realized last night how much I miss my pastor.  They aren't far away.  But I miss being able to run and cry and their shoulder.  I do still cry on their shoulder's just not in person.  It isn't quite the same.  Anyway, there are so many people at this church that care about me and the kids.  It's funny to watch something like this change relaitonships.  Some people avoid you cause they don't know what to say.  Then there are people that come and do the pat on the back thing and say they are praying for you.  Then there are the people that have always been there for me.  They sit sometimes and stare while I'm talking and laughing with someone.  They are amazed that I keep laughing.  I don't know what else they expect.  I suppose I could have chosen to let this destroy me.  But I figure, all of this should be of some value.  Why go through this and not allow God to use it.  After all He is the only one capable of making anything good coming out of this.  So, I'll keep letting them hug, kiss, and love me.  Even though everything in me wants to pull away so that they don't get hurt.  I want to protect them but what I want to do would hurt them more than my death would ever hurt them.   I am a very blessed person.  I have 2 families.  They both love me unconditionally.  On family chooses to the other one has to.  Amazing isn't it?

I spent last week in the hospital.  They took 7 liters of fluid off the first 24 hours I was there.  I think a total of 9 for the week.  YIKES!!  I am feeling a little less short of breath.  Not breathing as well as I'd like to be.  Nausea is still there.  I wish Dr. S could make it all just go away.  I know she can't.  But I can dream.  lol

Spent the weekend with the kids.  They went to Rodeo Night at church Friday.  Saturday we just watched dvd's.  Sunday we went to a friends birthday party.  It's been a busy weekend, but I'm enjoying every moment with them.  They both have such a great sense of humor.  We stayed up until 3 this morning just talking.  It was great.  They ask a lot of questions.  Dana is only 12 and is wondering if it would be better for her to adopt.  Holy cow!!!  I told her that she really didn't need to concern herself about that yet.  She reminds me of me at her age.  All I ever wanted was kids.  I alway thought I'd like 12 or so.  After Tommy, I changed my mind and decided 2 would be enough. 

I go to see Dr. Channick in about a week.  Hopefully the Nitric Oxide will do something dramatic.  It's only a consult visit to see if I meet the protocol.  Hopefully it won't be long before I can try the Nitric Oxide. 

Yesterday was a really good day.  I felt better than I have in a while.  I still deal with the nausea everyday.  Somedays it's manageable some days it sticks me in bed. 

I get to meet 2 more pher's next week.  I'm really looking forward to it.  It's difficult getting close to people in chat and never getting to meet.  So I am glad when I find that someone is close by or are coming in for a visit.  It'll be nice to meet them.

The Doc left the picc line in my arm this time.  It's really itching.  Saw her about it yesterday.  It's not infected so it'll stay put for now.  It is hard for them to draw my blood.  My veins are so small now. 

Tomorrow is another day.  I sleep in a bit trying to recover from having the kids.  Mom is here, so I'm looking forward to having some time with her.  Should be fun.

Here it is Wenesday.  I have had such a great morning.  Got together with a few PH friends this morning for an online chat.  It was great.  We had a lot of fun.  It's great getting to know each other.  Being able to share concerns and then to be able to laugh with them.  What a gift they are to me.

The last 2 day have actually been good.  I love it.  I like the repreve from feeling absoloutely horrible.  I still have the nausea and stuff.  But it is manageable.  I won't let it drag me down every day.  If I do.  The disease wins.  I feel like that is the fight I am in.  It's betwen me and the disease.  Fortunately I have the Lord in my corner.  So I'll win no matter what.  That's just the way it is. If the diesease takes my life I still win.  It's great to know that.

As the days draw close to my San Diego trip I get a little more anxious wondering what will happen and how Iwill handle what I'm told.  I'll just have to try no to think that far ahead.

So many of my ph family are passing away.  I feel badly for their famlies.  I hope that they shared the hope that I have.  It seems like there has been a lot of death lately.  I wonder sometimes if the heat has anything to do with it.  Just curious.

The weather is gorgeous today.  It's hot but there is a beautiful breeze.  I look out my window at a beautiful church and park.  There are definately a lot of "interesting" people to watch.  It's nice to see life moving a long. 

My neice will be having her baby in September.  It's a boy.  I am excited to meet him.  To see if he looks like my sister, his grandmother.  Jackie (his grandma) passed away just a couple of weeks after Rhonda was born.  So I wonder if he will resemble her at all.  Life is truly miraculous.  A baby reminds me of that.

Delays

They have pushed the start date for the Nitric Oxide up into November.  Just found out yesterday.  I'm not quite sure how to feel about it.  I'm a bit frustrated.  But there really is nothing I can do about it.  There are more papers to be filed with the FDA is what they said. 

The other struggle is trying to prevent to much water weight gain.  We're messing with my dosage of Lasix again which means we're messing with the Potassium dosage.  And of course the Potassium causes problems with nausea.  The domino effect is in action.  They sent me home from the hospital last week with the PICC line in.  It fell out yesterday.  I had a bunch of blisters on my arm from the tubing and they ended up popping getting the guaze just wet enough to allow the tubing to ease out of my arm.  So when I went to flush it yesterday all the saline just oozed out on me.  Kinda freaked me out at first because it's never happened before and I wasn't sure exactly what was happening.  Glenna says it happens often. So it was no big deal.

Dr. S is ordering a RHC so we can see exactly where we stand.  I'll be interested in what is happening myself.  Last RHC was in March of 2002 when I was diagnosed.  My pressures were in the 70's and cardiac output was 3 something.  I don't remember exactly.  

Looking forward to a relaxing weekend.  Planning on going to see my friend Vinny this weekend.  He hasn't been doing well himself.  I've become close to his family.  We've kind of adopted each other.  We make the most that we can of being sick.  Constantly joking about the Norco that we so fondly refer to as our little yellow pills.  We don't avoid talking about being sick.  We have fun while we do it though.  I'll look forward to that. 

I think it's funny the things I think sometimes.  I was thinking about how God made our bodies.  One little thing goes out of whack and it sets us in a tail spin.  Who would have thought that your potassium being a little low could make you feel so sick.  Or that having some little germ in your body could cause such turmoil.  It amazes me to think about it.  I think about how two people join together and another human being is formed down to the last little cell and gene.  I stand in awe of such an amazing God.

I do get frustrated on days like today when I feel pretty crummy.  I wonder why such a powerful God lets people suffer this way?  If he loves me so much why does He contiue to drag life out day after day?  And then something incredible happens.  Something that wouldn't have happened if I hadn't gotten sick. 

I have several brothers and sisters.  I get along with them all well.  There was something between one of my brothers and I.  Something happened when we were younger and he offended me greatly.  I forgave him sometime ago.  We never spoke of it.  But it has been there looming over us like a black cloud.  A month or so ago we finally talked about it.  I told him that I forgave him and he apologized.  I didn't notice to much of a difference, but he did start calling me once or twice a week.  Before we had spoken maybe once a year.  Well, last night I called him.  We spoke for a while and at the end of our conversation he told me that he loved me.  He hasn't said that to me ever.  I can't tell you how much it meant.  I have always known that he loves me, but to hear him say it meant everything.  If I hadn't gotten to this point where I know things shouldn't go unsaid or taken for granted I don't think this would have happened.  So there has been healing in a very important relationship.

Another thing happend.  I had a friend call me out of the blue.  She bluntly began the conversation by saying, "Ruby, I want you to know that your suffering isn't for nothing".  Well, I know that.  I believe that God has a purpose but I asked her what she meant.  She said that she wanted me to know that people are praying like they would never have prayed if I weren't sick, she said that people are watching me and getting their priorities straight as they watch my life change.  She said they are watching me laugh in the middle of this and finding joy themselves.   Her husband is my friend Vinny.  We are both suffering.  Vinny has a heart condition.  I can't remember what it is exactly but he wasn't expected to live this long.  I think they expected him to die 7 years or more ago.  He has just recently been experiencing a rapid decline.  I love them so much.  They've become an important part of my life. 

What better legacy to leave my kids than a legacy of Joy.  I can't think of anything better than that.  Can you?

I have the kids this weekend.  They've been asking me go give them a keepsake.  I actually found Demdaco figures to give them.  One is a mother and son and the other a mother and daughter.  I'm sure they'll like them.  It's something kinda grown-up and special.  Don't have any big plans.  Becki found me a Yahtzee which is one of my favorite games.  So we'll have fun playing with that.

I enjoyed a day out today and yesterday.  It's definately caught up with me.  I'm exhausted.  Yesterday went to Kaiser Sunset and met Evan and Sean.  They are people I met at PHCentral chat.  It's fun meeting new people.  Alma went as well.  She and her hubby gave me a ride home.  It was a nice day.  Then today Becki and I drove around and talked a lot.  She had to go by work.  We went and saw a friend in the hospital.  Then went to Red Lobster.  They have bottomless crab right now.  I love it.  Unfortunately one of the first bites I got was bad.  It smelled like Amonia.  Not good.  Ruined my appetite.  I was pretty bummed.  I got over it quick though.

I'm looking forward to a good night's sleep. Which I'm sure I'll get.  Should get the TAR back from MediCal for the RHC within the next few weeks.  I'm curious to know where things stand.  I guess MediCal takes forever getting approval for stuff.  But I'm a patient person. 

We'll be going to the boat again in a couple of weeks.  We're actually gonna sail this time.  It should be fun.  The kids will be with me.  We'll be spending the night on the boat.  I'm looking forward to Sleeping on deck with Tommy and Dana.  Should be a lot of fun.  Everything is a lot of fun when they are around. 

Time flies.  I don't particularly like it.  I had the kids last weekend for 3 days.  Took them home on Monday.  We did quite a bit.  We went paddle boating.  I let them do the paddeling.  We walked over to the park.  I had to call Tim to come pick me up.  Just making the effort to balance myself while I was getting off and on the little thing they called a "boat" was exhausting.  We went to Sam's Club on Sunday.  We went out to dinner on Friday.  And spent Sunday and Monday watching the DVD's over and over and over again.  It was nice just sitting with them.  They are both very affectionate kids.  They liked their Demdaco.  Dana took hers home.  Tommy is afraid his will get broken so he left it here.  Next weekend we're going to spend the night on the boat.  Should be fun.

It's funny the way people realate to you when you are ill.  I have a friend who was in the hospital to have his galbladder (sp) removed.  He's doing better now.  But the things he says.  He always say "but you know that, don't you".  And usually I do.   We all do.  Being tired all the time, the inconsistances in our day to day lives because of how we feel, the moments where "hey I feel pretty good today" and then the afternoon blasts you.  It all makes sense to me.  His body is recovering from surgery, from being sick.  My body is the same way.  It's trying to recover.  Fighting to recover is more like it.  It just can't.  They give me medication to mask the symptoms of the disease.  Flolan, digoxin, lasix, potassium, zaroxolyn, ameloride, norco, ativan, and they've added magnesium.  There isn't one of them that can cure what I have.  For the most part they are all there just to help my body work better.  I love it when I here that someone's pressures have dropped because of whatever treatment they are on.  It makes me happy.  And a little jealous because it isn't working for me.  Just a little though.  I'll walk the path God has set out before me, whatever it is.  And there is peace.  And a lot of Joy.  And appreciation for what I have been given.

Got some new symptoms hanging around.  Fatigue is really bad.  Twice this week I've slept til 3:00 p.m., stayed awake til 7 then back to bed til 11 the next day.  And this chest pain that travels down my left arm when I go upstairs.  That's not fun at all.  I don't like pain.  I don't really know anyone who does.  But I do know people who handle it a whole lot better than I do.  LOL 

It's finally starting to cool off enough in the evenings for me to get out and walk a little bit.  It's difficult.  And I do it cause I can.  That's my favorite thing to tell Becki.  I feel awful and I'll cook dinner.  She'll ask why the heck I'm up doing it, that I should be resting.  I just tell her "cause I can".  Now she'll ask me something like that and she'll say "never mind, I know, cause you can."  Sometimes I have to do it no matter what just cause I can.  Somethimes it's the only drive I have.  So it's just something we get to laugh about.  Gotta laugh.  Otherwise I just cry.  I choose to be happy, and thankful, and positive.  Sometimes I'm happy at someones elses expense.....Sorry Jackie and Alma....that's what friends are for. lol  Love ya both.

I guess I have some kind of virus.  Becki isn't feeling well either.  Had blood drawn yesterday.  My Potassium along with all my other electrolytes are fine.  I was happy to hear that for a change.  I have a headache and an upset tummy.  Not like I haven't dealt with that before.  After I thought about it, Dana wasn't feeling well when they were here last.

I'm still having problems with more SOB but I guess that's to be expected.  The thing that is still really getting to me is the darned fatigue.  I don't think there is a pill that can help that.  I don't remeber another time in my life when I have been this tired.  Earlier in the week someone in support group chat made a comment that she felt lazy.  I knew what she meant.  It does leave you feeling like a lazy person.  I know I'm not but I just can't do much of anything.

I'm suppose to be going down to El Cajon next Tuesday.  My friend Julie is driving.  We are going to see friends who live down there.   I'm looking forward to that.  And I have the kiddos again this weekend.  Dear God, please give me the strenght to get through the weekend with the kids.  Let it be a good visit.  Boost my energy just a little and please take away the nausea.  Amen.

I feel like it's all I can do sometimes.  Like my life is about getting through this weekend with them and then making sure I do all that I can do to make it through to the next weekend that I have them.  I get so frustrated.  What kind of a life is this for anyone to have?  It's getting more and more difficult to find purpose.  I feel badly for feeling that way but I do.  And I said when I started this diary that I'd be real.  That I'd be open.  So, I am.  And I have to say that life is sucking pretty bad.  I try to focus on the good but sometimes it's nearly impossible.  I know I'm not alone.  It's difficult to go on when EVERYTHING hurts.  I've been feeling like I have the flu that just won't go away for about 3 days now.  It shocks me how much my tolerance level has gone down.  Not my pain tolerance, that's gone up, but at how it gets to me emotionally so much more quickly now.  Then I feel like a wimp cause so many have endured so much more than I have.  But I do the best that I can. 

I am looking forward to my weekend with the kids though.  We are spending Friday night on a friends boat.  Plans have chaged a little and we won't be sailing.  We'll do that soon though.  I think it's a good thing that we aren't sailing.  I think it would be to much for me this weekend.

Tim's birthday is this weekend. (Time is Becki's hubby).  She's throwing a party for him on Sunday night.  My neices' baby shower is Sunday afternoon.  Needless to say.  I won't be going to her shower.  Something else kinda cool happened this last week too.  My sister Jackie's (Jackie is the one who died of PPH 23 years ago) friend Renee' got in touch with me.  I haven't spoken to her since I was 17 years old.  We've been emailing each other.  It's been nice.  I loved my sister very much.  It's been a long time since I've laughed with someone about her.  It's still to painful for my mom.  You know the saying "we shouldn't have to bury our children"?  My mom is a good example of why.  She hasn't ever gotten past it.  So, when I finally got to laugh with someone and remeber her that way it felt good.  It's the way I want people to remember me.  LAUGHING!!!!

Went to the doctor with Becki.  We have a partial diagnosis.  I'm not even sure how to spell it.  Fibro Mialga and severe migrains.  They've ordered an echo, a treadmill test, and she's going to see a cardiologist.  They're pretty sure something is going on with her heart.  She has a really bad headache today.  Doing everything she can to finish her day at work. 

As for me, I feel like everything is falling apart.  I feel awful physically.  Emotionally, I'm doing the best that I can.  It's a wonderful to have people around me who love and support me.  Dana is suppose to sing for the first time at youth group.  She's suppose to call me and let me know for sure so that I can be there.  It sounds horrible but I'm hoping that she isn't this week and the it's next week that she starts.  I feel like a horrible mother when I say that.  But I think it'll put me over the edge tonight.  Meaning it'll exhaust me.  Although at this point I don't know how I could possibly be any more tired. LOL

I realized today just how much I hate taking the kids back home.  I always hate it but this time it was exceptionally noticable.  I fought tears driving all the way.  It's difficult for them as well.  The last 10 minutes of the drive is usually when the 2 of them grab my hand or lay their head on my shoulder.  Of course today the minute they touched me I lost my fight to maintain composure.  Fortunately, neither saw.  I figure it'd just make leaving more difficult for them. 

They are both enjoying their new school.  Both are in Junior High.  And both have made plenty of new friends.  I was extremely happy to hear that.  I was a little concerned.  It's difficult to switch schools but I think especially during Jr. High or High School.

Despite my not feeling well, we still made it to the boat.  Spent the night on Friday night.  I didn't sleep well.  And I've decided that birds at 6:00 a.m. are not a good thing.  Saturday morning they rowed around the harbor in a canoe (or a Kiyak not sure which is which).  They enjoyed that.  Then we went over to the beach.  It's the first time I've been to the beach since about 2 months after I was diagnosed.  I get SOB enough when I walk on hard surface, it's much harder on the sand. 

I took my CD walkman with me along with my favorite praise and worship CD and just sat and watched the kids playing.  I sat listening to the CD til it got to one of my more favorite songs called "On My Knees".  It starts out with the words "there are days when I feel the best of me is ready to begin, then there are days when I feel I'm letting go and soaring on the wind".  I mentioned the "roller coaster ride" that I feel like I'm on.  The first part of the verse pretty much describes my life since my divorce 5 years ago.  As horrible as it was, and as much pain as it caused so many people, I allowed God to begin to work in me and I began my life.  And the 2nd part of the verse is my life now....letting go and soaring on the wind that God Himself is carrying me on now.   And although I hate the roller coaster ride of not feeling well and then REALLY not feeling well He is carrying me.

So I sat on the beach, and I watched my babies play in the water.  And I'll admit I sat and cried my eyes out.  I remembered times when I could jump in and play with them.  I remembered wrestling with them, walking with them, riding bikes with them, and the million other things I can't do anymore.  And I realize as much as I miss that time, that we are in a "different" time.  Now our time together is more intimate.  We cuddle more, we talk more and believe it or not we laugh more.  I think because we realize that the time we have is precious.  And as much as alot of other people haven't realized yet, that time matters, we have.  And we have learned to treasure it. 

Someone posted to PHCentral I think it was at PHInspire, how God had used her illness to reach other people.  I believe that.  I don't completely understand why I'm ill, but I do know that God has used it.  I know that some people think that illness is God's way of "punishing" them for something they did or didn't do.  It frustrates me when I hear that.  All I know is that that isn't the God that I know.  Stuff just happens.  And I think I have a choice, let God use it for me or let Satan use it against me.  So, I choose to let God use it for me.

My neice Rhonda went to the hospital on Saturday thinking the baby was on the way.  Unfortunately it just wasn't her time yet.  So she is still waiting for the arrival of her son.  Her shower was today.  So, I guess it's a good thing that he decided to wait a little longer.  A shower with no mom would be kinda weird.  My sister Jackie, is in my thoughts a lot lately.  I know it's being prompted by the fact that her baby is getting ready to give birth to her Grandson.  Rhonda was only 2 weeks old when Jackie passed away.  My prayer is that Rhonda will be fine as well as her son and that she will live to see him grown.  I'm concerned because I don't think she is taking the whole PH thing serious enough.  And I wish that she would insist on being monitored while she is in labor. 

Another of my neice's, Missy, is getting married on November 1st.  I'm hoping to go out to Chicago for a visit for Thanksgiving. 

It's been a busy weekend.  I'm very tired.  But it was good.

The Hospital

I was just discharged from the hospital on Tuesday.  11 days is a long time to be in the hospital.  I was admited for severe nausea, vomiting, SOB, severe leg pain and severe headache.  My Hickman was infected.  The catheter itself was infected, thank God it didn't reach my blood stream.  There were 3 different types of bacteria.  Of course they couldn't all respond to the same anitbiotic.  I was on 3 different antibiotics. 2 IV and one oral.  My last day taking them was on Friday. 

I also had a RHC.  My pressures haven't changed enough.  Well not enough for me.  I know I should be grateful but it's just not good enough for everything that I've gone through.  They started me on Viagra.  I take 100mg 3 times a day.  I'm hoping for the best.  It isn't easy though.  It's difficult to have hope after the Tracleer and Remodulin failing and the Flolan not working well enough.  I'm afraid of being disappointed.  I guess my way of dealing with the fear is to not get excited until there is proof that it is working.  I'm still in stage 4 still.  That hasn't changed.  My cardiac output has improved.  Which is good of course.

For whatever reason my emotions totally hit the wall this visit.  The social worker at the hospital came in many times to talk.  I'm thankful she was there.  I finally got angry about all of this.  Had a 2 day pity party.  Did the why me and not someone else thing.  Mourned the life I had and the dreams that I won't be able to achieve.  It was really difficult.  I got mad at everyone.  Not that they did anything.  I was just mad.

It's kind of scary when all the nurses know you by name.  They remember me.  They said they remember me cause I'm an easy patient.  If they only new.  I realized how easy it would be to isolate myself.  And I really realized how much being a part of PHCentral means to me.  We really are a family. I'm thankful to have so many people that understadn EXACTLY what I'm going through.  And that it's good to feel "normal" somewhere.  I really really miss work.

My neice had her baby. September 24.  His name is Tyler Wayne.  He weighed in at 9 and half pounds.  and was 20 inches long.  I can't believe my sister would have been a grandma.  She ended up having a c-section.  She dialated to 9cm and then her labor just stopped.  So far she seems to be doing ok.  I'm a little concerned.  I just want her to be careful and pay attention to her body.  My sister died so unexpectedly.  I just don't want Tyler to have to grow up without a mom.  I haven't seen him yet.  I'll go on Friday.

I've been visiting with my brother for the last 5 days.  He just moved back to California about 6 weeks ago.  I haven't been able to really spend anytime with him since his return.  He has  3 year old daughter.  She's a sweetie.  She has her parents wrapped around her finger though. 

I'm still tired and trying to recover from the whole infection ordeal.  And of course there is the Hickman placement on Wednesday.  I've been able to spend some time with a few of my friends.  I have to say that thankfully, after 18 months my realtionships are turning back into normal friendships.  They don't seem to be so afraid.  And I think I FINALLY got them to understand that the things that are happening in their lives are important to me.  I know so many of them felt that I was going through something so huge that they shouldn't have a "hard" time with anything they might be going through.  It left me feeling pretty alienated.  It's difficult especially when you are trying so desperately to not be identified by this diesease.  PPH isn't who I am it's just what I'm living through.  It was difficult getting them to understand that.  I'm still me.  Yes, there have been a few changes and yes my priorities have definately changed but I am still me. 

I'm thinking about going to Chicago for Thanksgiving.  One of my sister lives there and a brother.  I haven't seen my brother in years.  I hate flying.  I never have liked it.  Last year I went to Texas.  It's hard to believe that another year is coming to a close. 

I haven't spent anytime with the kids in about a month.  They don't like coming to the hospital.  It freaks them out to see the IV's sticking out of me.  I just think in general they don't like that I'm sick and have to be there.  We have spoken on the phone nearly every night.  Tommy initiated a visit with the school counselor.  She was pretty amazed that he found her.  He really needed to talk.  I'm happy that he knows his limits and isn't afraid to ask for help when he needs it.  I will see them this weekend.  Thank God.  I'll plan on staying with my brother.  He has a pool.  That will give them something to do.  Last time I had a Hickman place I was in pain for about 2 weeks.  So I don't think I'll be able to do much but at least we will be together.  That's all they care about anyway.  But I'd still like to give them something to do.

I'm not getting so sick from the Viagra this time.  It's funny the questions that people ask about it.  At least they ask.  The big myth that Viagra is some kind of sexual turn on pill makes me laugh.  So I had to explain what exactly what it does and that since I am not a male that the effects aren't the same.  Although  I do wonder how the guys are fairing with it.  They have me taking 100 mg 3 times a day.  I can't imagine a guy with a normal sex drive having to deal with the effects.  Then I wonder if any of us even know what normal is anymore.  I do find myself afraid to hope that this may actually work.  Everything else seems to be failing me.  I'm afraid that it will be the same old thing.  It'll work for a short period of time then stop like everything else we've tried.  I guess time will tell.  In the mean time I'm trying to be optomistic. 

I am tired and haven't been able to fall asleep tonight.  I slept form 8 to 1 this morning but haven't been able to go back to sleep.  Here it is 4 a.m. and I'm wide awake.  Hopefully I'll be able to fall asleep soon.  I don't do well when I'm tired. 

Well, the date for the Hickman placement was postponed until Friday.  It's ok.  It will effect my weekend with the kids a lot more than it would have if they had done it Wednesday.  I'll just rent a lot of movies and we'll spend the weekend watching them and talking.  Just have to play it by ear. 

It's really difficult trying to live and not let PH run your life.  But so much of what I do everyday depends on how I am feeling.  I was reading through some of the Feature Articles.  I read one that I think was called "Living Life While You Have It".  It was something like that anyway.  I realize that I do.  I'm often hard on myself.  I think that I should be doing better.  After all I am a Christian.  And by golly that means that I should be doing better than I am.  At least that's what a lot of other people think.  It's frustrating hearing from people who have had nothing more than a cold or the flu in their entire life, and they think they need to tell me how I should handle being ill.  They don't understand the concept of doing what you can when you can.  I think they are the same people that take life for granted.  They don't think that Christian's should get depressed, have anxiety, or have doubt.  I'm glad it isn't their expectations I have to live up to.

I feel like my entire family is falling apart.  My sister may have Hepatitis C, my brother is having a battery of tests done, (they found a bunch of masses in his chest), my oldest sister is going through a divorce, and then there is me.  All this is just to much for one family to have to go through.  Believe me there is plenty that I am grateful for.  My kids are doing well, they are both happy, and both are adjusting to everything life is throwing at them.  I have a family that loves me and appreciates my life.  I have friends that love and support me.  It's frustrating though when so many things start popping up in your face in such a short period of time.  It gets overwhelming sometimes.

I walked into SavOn drug store yesterday.  Right next to the Halloween isle was the Christmas isle.  I remember when Christmas decorations weren't put out until the Saturday after Thanksgiving.  People are is such a hurry to rush through life.  It seems as though everything around me is speeding up.  Not very many people stop to enjoy life anymore.  And here most of us are grateful to make it through another day, week, or month.  I guess that depends on where you are with the disease.  Why does it take having something go wrong before we stop to look at what we have and to see what is going on around us? 

I want so badly to go back to work.  More lately than ever before.  I know that I can't.  I sit and think about the limitations that I have.  I think it's more because I want my life back than anything.  I had mentioned that this last hospital visit was really emotional.  I came home and the emotions really haven't been resolved.  I did figure out for certain that I'm not afraid to die.  But I am afraid of how it will happen.  And of course there is no answer.  I know that I can't think to far into the future or I get upset.  A lot of women sit when they are young and dream about their wedding day, about their children and their children's lives.  What it will be like when you hold them for the first time.  What it will be like to hear them say mama for the first time.  What it will be like to see them take their first steps.  What it will be like when they graduate, get married, and then watch the whole process of their life.  And I never once thought that something would happen to make me question whether or not I would see those things happen.  I never thought of an uncertain future.  I mean you never know everything but there are somethings that you just don't question.  And now....I question.  Of course I see where people are living longer now with PH.  But when the treatments aren't working well, you're left with doubt. 

So, here I am.  I've made it through another month.  My weekend with my babies is staring me in the face.  And this will be another weekend overshadowed by something that is related to PH.  The kids don't mind but I do.  All they care about is that they get to spend another weekend with their mom.  They don't care what we do, all that matters to them is that we are together.  They don't seem real sometimes.  I wonder if they are just making sure that I don't feel bad.  But I know better.  So I figure if that's all that matters to them then I can do that.  I can sit and hold them.  I can talk to them.  And answer all the questions that they'll have for me this time.  I can just BE with them.  So that's what we'll do.  BE!!

The Kids

I had the Hickman placed on Friday.  It hurt the last time bad enough.  This time it was awful.  I don't know if it has something to do with where they placed it or what.  But I'll tell you this...It HURTS.  I thought being poked and prodded all the time would make my pain tolerance go up not down.  I'm not bruised as badly but it definately hurts worse.  The procedure was done on Friday morning around 9.  I was home by 12:30 and asleep by 12:40.  From what I understand they gave me lots of drugs.  Thank God for that.  My brother picked me up at 2 and then a friend took me from his place to pick up my kiddos. 

It had been a month since I had seen them.  I unfortunately slept all night Friday night and all day and night Saturday with the exception of about an hour.  I woke up today realizing they had to go home and I hadn't spent any time with them.  I sat down to talk to both of them, starting off with the apology.  They both just looked at me.  Said they new I wouldn't be myself.  Tommy looked at me and said "you might have been asleep but we spent time with you".  Apparently they had taken turns climbing onto the sofa with me and just laid there.  Dana said she slept with me for about 2 hours Saturday.  They both told me that it didn't matter that I wasn't awake talking to them that at least we were together.  I just cried.  How many of us have adults in our lives that unerstand that much?  And here my 12 and 14 year old show more compassion and understanding than most of the adults in my life.  Tommy hugged me and said "mom you gotta stop looking at the glass as being half empty and see it as half full".  I asked him what he meant cause it didn't make sense to me.  At least not in the way I had been exposed to it.  He said, "mom you didn't have anything bad happen during the procedure, you didn't have to cancel taking us, I know it hurts worse this time cause you look awful and I know it's harder this time but it's cause you aren't doing as well as you were the last time, but you're here still, that's all that matters."  Of course my simple crying turned into sobs.  They just appreciate ever day they have with me.  It floors me.  And in part makes me feel bad. I wish they'd do what I think is normal and get pissed off cause they're being jipped.  They shouldn't have to be so "grown up".  I can just see them sitting around trying to find the reason that the glass is half full every day. 

My doctor and nurse had told me to tell the kids hello for them so I passed along the greeting.  Tommy told me to tell them "hello" and "that he misses them".  And then he asked me "if it was ok to tell them that he loves them."  I of course said it was ok.  But I had to ask him why he wanted to know if it it was "ok" to feel that.  He just said "because they are doctors, I never heard anyone tell the doctor or the nurse that they love them".  So I asked him why he loved them, not that I was questioning his love for them but trying to figure out what he was basing it on.  He said I love them because they are helping to keep you alive.  He's only 14 for pete's sake.  And as proud as I am that he isn't afraid to say what he feels it still saddens me.  I had to ask him if he would be angry at them when I die. Like blame them or something.  He said, "oh no, I know they are doing the best that they can".  We spent some time today talking about the kind of man he wants to be.  And the kind of man that he doesn't want to be.  We talked about a special girl at school and how he finally has her number.  Where does the time go?  I wanna go beat up all the girls.  I guess all mom's feel that way.

Dana isn't quite as verbal as Tommy is.  She's pretty carefree at this point which I am happy about.  Stuff doesn't wear on her the same way that it wear's on Tommy.  I know that she thinks about it.  I know that it bothers her.  But not to the same depth it does Tommy.  She makes certain that I know that she loves me. That she misses me and that she worries about me.  But it isn't on her mind constantly like it is on Tommy's.  I just want them both to be kids. Dana is better at that then Tommy is.  I am so amazed that they are so different.  I love them and I like them.  I'm proud of who they are as individuals.  I love they way they look out for each other.  They can fight with each other and be mean and nasty to each other but let someone else try and watch out.  They are wonderfully amazing children.  I know I go on about them all the time but they are my everything.  I always wanted to be a mom.  But I never ever thought that it would be this amazing.  Sometimes I wonder if they are real.  Their attitudes and the things they say don't seem real sometimes.  I guess when you put the best of who you are into someone this is the result you get. 

My brother will find out on Thursday what exactly is going on with him.  I offered to go with him but he said he wanted to go alone.  I know that feeling.  He told me that he knows it's not going to be good.  And that if they confirm their suspicions (SP) he will need to be alone.  Mom goes to get the results of her test on Thursday as well.  They were ruling out PH with her.  She had some test run last month.  Mom is 74.  Her side of the family is the one that the PH gene comes from.  My sister who lives in Texas is waiting for test to come back this week as well.  I've tried not to worry to much about any of it.  I've learned that worrying doesn't change anything it just makes me tired.  Besides why worry when you don't really know what's going on.  I'll worry when there is something to worry about.  It just doesn't seem real.  How can one family have so many things go so wrong all at the same time? 

I go see the PH doc on Wednesday.   I've been on Viagra for about 2 and a half weeks now.  I'm a little more SOB but the nausea is gone.  I've been experiencing some dizziness.  Especially when I move.  They warned me that it could happen.  I guess it's one of the more prominent side effects.  The Viagra lowers your blood pressure.  I was told to move slowly when I was going from one position to another.  Not to turn my head to quickly.  I guess there is the possibility of fainting.  So, I'm wondering, how do they know what to blame fainting on?  Do they blame it on PH or on the Viagra?  I realize for as much as I have learned about PH I still have a lot more to learn.  I just found out last week that just cause you're mixing 2 red tops of Flolan and your rate is the same as someone elses it doesn't mean that the ammount of ng's you're getting is the same.  Who would've thought. 

One of my best friends daughters got engaged over the weekend.  She's 23 years old.  She's going to college majoring in nursing.  Her goal is to become a labor and delivery nurse.  She's a great girl and I couldn't be happier for her.  I'm looking forward to Thanksgiving hoping to be in Chicago.  I won't make it out there in time for my neice's wedding.  She'll be getting married November 1.  But it will be nice to be with them for the holiday. 

Had a visit with the PH doctor.  My neck veins are a little higher than she'd like and somehow I've managed to gain weight.  Overall she is pleased.  I hate this.  I try not to get discouraged but it seems that there is always good mixed with bad.  I'd like one visit where everything is good.  Although, this was a better visit than usual.  We dropped my Flolan rate down from 53 to 50, so we'll see how that goes.  I've only had a couple of days of nausea since being discharged from the hospital 2 weeks ago.  That is a huge improvement.  Before I was nauseated every day all day.  So going down on the Flolan seems to be an answer.  And the Viagra seems to be holding everything steady.  So, I guess the plan is to go down on the Flolan as much as is possible.  I get to wait a whole month to see her again, instead of my usual every 2 weeks. 

I'll continue to push forward as best I can.  I am still having a hard time getting my hopes up to high about the Viagra.  Everything else with the exception of the Flolan only worked for a couple of months before I had to switch to something else.  So if I make it on the Viagra for 3 months without my symptoms worsening, then I'll get excited.  Until then I'll remain optomisticaly skeptical!  Is there such a thing?  Sounds like a contridiction to me. 

I did pass the message along to Dr. S from the kids.  She had the same question I did, why does Tommy love her.  So I told her.  She's so funny.  She looks at it as a vote of confidence on their part.  I guess it's a good thing that she feels that way considering she isn't getting a whole lot of confidence from their mom.  Not that I don't have confidence in her.  But there is only so much she can do.  If I didn't have confidence in her ability I wouldn't continue to see her. 

The Hickman site pain is getting better with each day.  Just don't touch it!!! lol  But at least it isn't throbing anymore.  My neck is still sore.  And if I do to much with my arm it seems to aggrivate it.  I guess that would be normal.  I got a call from Accredo (the supply my Flolan).  They were calling to "assess" me.  It's been a year now that I've been on Flolan.  It's difficult when you are forced to look back and compare how you were and how you are now, and not be able to say "I'm feeling a lot better" when that's what I expected.  I pretty much feel the same way that I did.  I do believe, however, that if I weren't on anything it would be much much worse. 

So all the questions running through my mind now.  Will I be here another year?  Will I be the same or doing worse or maybe doing better?  Will life ever be the same?  I know it won't be.  You can't go through something like this and go back to being the same.  Not in any way.  They aren't questions I usually ask myself but when someone starts making you think about it, well what else do you do.  So here I am.  Exactly 18 months after being diagnosed, 12 months after starting Flolan.  And I'm not satisfied with where I am.  Don't get me wrong.  I am so greatful to still be alive, able to move around on my own, able to still spend some time with my family and friends.  I just feel like I'm being forced to settle for something less than what the least I expected was.  I guess the stick by which I measure what I expect will have to change.  I don't like feeling like I have no control over anything.  And that is how I feel.  Even though to some degree I do.  But every decision I seem to have to make is life or death.  So I feel like I'm rolling with the punches.  Complying to things the doctor wants me to do, even though I am scared to try them.  Like the Viagra.  I was really scared considering the last 2 times we tried I got so sick. But then we didn't go down on the Flolan.  I guess the 2 were just to much.  But I caved.  It pissed me off that I did.  I had stood my ground for quite sometime.  But you get into the hospital and they can hound you every day.  It's just not an easy thing to stand up to. 

We did a 6 minute walk today.  It was pretty bad.  I don't know exactly how far but it was a lot less than I did my last day in the hospital.  That sucked. 

One of the things I don't like about writing in a diary is that everything seems to be so negative.  It really isn't.  But a diary is where you are suppose to write down the things you wouldn't say out loud to anyone.  I look at it as a place to vent my frustrations.  It's harder here because there are people reading it.  But the way I look at it is like this.....sometimes I think I'm loosing it cause I think I'm the ONLY one feeling a certain way and it usually ends up that I find someone that feels exactly the same way.  Only sometimes it takes a while to get the courage up to ask, "does anyone else ever feel like this"?  This way, no one has to ask cause they read these diaries and find that there are other people feeling exactly the same way they do.  So please don't think that I don't count my blessings because I do.  I do every day.  But I also know that life isn't always pretty.  Especially not with PH.  Everyday has many many struggles.  Nothing is "normal".  And I don't go very long at a time without thinking about having PH.  How can I when I'm carrying a pump around all the time?  PH is there it is part of my life and it has become a part of what makes me who I am today.  It isn't who I am completely.  It isn't what I want to be identified as.  But I can't deny that it is part of me. 

My Brother

Well, my brother went to get the results of some preliminary test results today.  I had inteded on going with him just in case the news was bad, but he ended up needing me to stay with my 2 year old neice.  I was a little scared but everything went fine.  So far all of the blood work is normal.  He had a pulmonary function test which showed that he had some kind of blockage.  They aren't really sure what is going on.  Next Wednesday he has to go in for a lung biopsy.  My heart sank when he told me.  And of course my first thought was, holy crap, does he have PH?  I pray that he doesn't.  I wouldn't wish this on my worst enemy let alone my little brother.  (he's 33 by the way)  He has told the doctor about my family history of PH and I always wonder why they don't check that first.  Then I think I'm just over reacting.  The majority of growths or lumps or whatever they call them are in his lungs.  So naturally I'm thinking pulmonary emboli.  Then I thought, you know, I know way more than I want to know about this stuff.  So, I guess we'll do some more waiting.  Trying not to get anxious or upset about it. 

Mom also went to get the results of her tests.  Her doctor never showed up.  Didn't call.  They didn't know where he was.  So she ended up coming home.  She asked him to call me, but never received a call.  So I'll call her PCP in the morning myself and get the results. 

Spoke to the kids today. This week has flown by.  They are both doing ok.  I had missed Dana at home, but caught up with her at youth group.  Tommy was home reading. 

The Hickman site is improving every day.  As far as the Viagra, everything seems to be holding steady still.  I do feel a little fuzzy today.  Kind of like when you have a cold and take meds for it, you know, medicine head.  Like my head is a balloon and it's floating around.  I am having a bit of trouble concentrating and am getting confused easily.  I'm not sure what that's about.  I'm not bluish or anything so I don't think it's my sat's.  I did go down another 3 cc's on the Flolan Wednesday.  Of course per dr.'s request.  If it hasn't improved by Monday, I'll call Dr. S.

I did have several hours where I was really nauseated. But it subsided. My appetite is decreasing.  I only get hungry once a day.  Usually around 4 or so.  I'd say over all I'm feeling a bit better.  THANK GOD!!!

Another Battle

It seems as though life is just one difficult situation after another these days.  I'm doing my best to hang tough and be the strong one but it's getting to be more than I can handle. 

I now have the kids living with me again.  I wish I could say it is because I am doing better, but in reality it was unavoidable.  I missed seeing them every day but I have to say that it was far less stressful for me just dealing with me.  They are wonderful kids and are doing everything they can to be on their best behavior but for goodness sakes, they are children.  It is difficult.  But for now it is also necessary.  So, just like everyone else in the world I will do what I have to do.

I'm tired, worn down, not feeling well.  My everyday life is taking a toll.  I guess this has been a "reality checkpoint".  Not something I really wanted to see.  My health really hasn't gotten better.  It's gotten worse.  And as far as the Viagra, I don't think it's doing a darned thing.  Trying to stay encouraged is difficult.  Not giving up is difficult.  I just want to go to sleep for a week or two.  Maybe I'd feel better than. 

At least the kids are at peace now that they are with me again.  Even in the midst of all the uncertainity that surrounds us right now.  They trust me.  It's an amazing feeling to know that they trust me as much as they do.  And I wonder, "have a placed my trust in God the way I'm suppose to", the way the kids place their trust in me?  I know this feeling that I have is only human, something to be expected.  But it makes me feel as though I am failing in some way.  I want answers.  I want them now.  I don't want to wait anymore.  Everything will be ok.  I just have to be patient.  It's just difficult. 

I find myself looking depression in the face a bit today.  I don't like how it feels.   I don't like how I feel in my own skin.  I'm sure plenty of us feel this way.  Doesn't make me like it any more though.  It doesn't feel normal.  Not for me.  I just hope the answers come soon. 

A Time to Grow

I've decided that this is a growing time.  You know, one of those times that God uses to bring us into a deeper relationship with Him.  I've been brought to yet another time where I have no choices and no answers.  I know someone does.  And I know who He is.  It is frustrating waiting. 

I don't know what is happening tomorrow.  I don't know where we will be living 30 days from now.  I don't know if the kids will still be with me or if they will be with their dad.  I don't know much of anything really.  It isn't a fun place to be.  It's the place where I wish I could say I found peace but I can't.  I know that tomorrow is in God's hands and that He knows the answers to all of my questions.  I pray He'd let me in on it.  Things are to up in the air for me.  I like the way "knowing" makes me feel.  I don't like being in the dark. 

I don't feel well.  The stress is beginning to take it's toll.  My breathing is getting worse.  I stopped taking the Viagra last night.  We don't think it's doing anything.  So far that appears to be true.  The hot flashes are subsiding along with the headaches.  I'm tired and just want to go to sleep for like a week.  I wonder if that would make me feel rested finally?  It's difficult always being weary.  Always feeling like I've been going 150 miles an hour all day everyday.  And the reality is that I go about .5 mph about 2 hours a day and that's about all I can do. 

Tommy and I went for a walk last night.  We walked very slowly and I still turned blue.  My heart still pounded.  But he watched me carefully with the cell phone in his little hand just in case he needed to call for help.  We go to our favorite Mexican restaurant.  Ate, and then walked accross the street to Trader Joes, (it's one of those healthy stores) to get Tommy's favorite desert.  Something called Moochi.  It's a Japanese thing.  A small melon ball size scoop of ice cream surrounded by some type of dough.  Strawberry is his favorite.  As we walked back home he pulled close to me and asked if I was ok.  I told him not really but not to worry.  He said, "I miss this the most, walking with you".  It's been a long time since we've walked together.  I've tried to make sure that I don't do anything to make myself worse.  What's different?  I guess I just don't care anymore.  PH is a progressive disease and I'm progressing. So I through caution to the wind and went for a walk with my boy. 

We were only away from home about 1 hour but we had a GREAT time.  It was worth every pain in my chest, almost feeling like I was gonna faint, and even turning shades of blue that people actually noticed.  It's funny the way people respond.  "I'm sorry miss but you look a little, well, blue".  "Do you need us to call for help"?  Tommy and I both said thank you and no and went on our way. 

My thoughts are with Dana.  Hoping that she is having a good time with her dad.  That she isn't just sitting there or worse being grilled about what has been happening over the last 2 weeks.  She is her daddy's girl.  She loves him.  I'm glad of that. 

So here I sit.  Ready to begin another week.  Wondering if my strength will hold up or if I'll end up flat on my back.  Hoping that my strength will hold.  I'm thankful for all of my friends that have been helping me through the last 2 weeks.  Rides to and from school, a trip to the doc's office, rides to Youth Group and back, a place to sleep, food provided.  And most importantly unconditional love.  It's awesome.

It seems as though life is a never ending stress factory these days.  The kids are getting to the point where they are relaxed enough now that there feelings are starting to come out.  It isn't a pretty site.  I am so angry with my ex I can hardly stand it.  There is nothing worse than when someone intentionally cause your children harm.  And that it was their father makes it that much worse. 

I have never REALLY been depressed before.  I thought I had been, but now I know what that really means.  It isn't a good feeling.  I saw the Dr. today.  She started me back on the Viagra.  I went off of it on my own.  I guess the reason I did was the need to feel like I had control over something.  Everything seems to be so out of my control right now.  Not only that there is a part of me that just wants this all to be over.  It sounds awful.  All of this is just catching up with me.  I don't really know how to deal with it all.  I guess just one day at a time.  I'm not suicidal.  I don't have the desire to kill myself.  At least not to the point of taking an overdose or anything like that. 

So now Thanksgiving is approaching.  And I was sitting today thinking of all the things I have to be so extremely greatful for.  I have wonderful supportive friends.  My church is helping me rent an apartment.  I am thankful for them.  I am thankful that my children are physically healthy.  (although they are fighting colds)  But they don't have this dreaded disease.  I am thankful that they are with me.   I am thankful for both Dr. Shapiro and Glenna.  I am sure that they get frustrated with me when I do stuff like this.  But they haven't given up on me yet.  And for Ronna, the social worker at the hospital.  If it wasn't for her I think I would have literally gone crazy by now.  She is as tolerant and patient of my mood swings as Dr. S and Glenna are.  I am thankful for everyone at PHCentral.  I can say anything I need to and no one passes judgement.  They are so very encouraging to me.   I am thankful for  Becki.  She has stayed by my side through this entire ordeal.  I have a lot to be thankful for.  I think the thing that I am the most grateful for is that God loves me, that He is looking out for me.  And that He is looking out for the kids.

Last week a woman whose ministry it is to buy clothes for kids whose family are in a less than good financial state, took my kids out and got them some things that they needed.  New shoes, Jackets, shirts, pants, skirts, underwear.   She took them to dinner.  It was a huge load off of my mind.  I was especially concerned about the jackets.  But God did provide through her.  I think it's amazing that she let Him do that. 

I'm trying to remeber all of that in the middle of this entire mess.  It is difficult.  It seems as though I spent the last 5 days doing almost nothing but crying.  I really don't like feeling this way.  It isn't comfortable or familiar.  I feel the same way when I'm angry.  I guess it's really the fact that it isn't something that I've been able to control.  I won't allow myself to get really angry.  I don't know what would happen.  I wish I had the power to not allow myself to get depressed.  It seems like it kind of came up behind me and knocked me down before I knew it was even coming.  And I do wonder how many other people with PH go through this.  Does everyone want to give up sometimes?  Or are they just so greatful to be alive that it doesn't enter their mind?  I really didn't think things could get any worse, boy was I wrong.  And I'm sure they could get worse still. 

I've noticed that it has been more difficult to write lately.  Not because I don't have anything to say but because I don't want to discourage anyone.  There is a part of me still that knows that there is hope.  It just isn't a very big part.  And when I say that I don't mean that I don't have hope that God can do the miraculous.  I'm saying that I don't have hope of anything else helping but that. 

HAPPY THANKSGIVING EVERYONE!!!!!!  I do love you guys. 

It's been about six weeks since the kids have been back with me.  It seems like every week there is  a new challenge to face.  One more thing I have to decide, one more issue to deal with, it just always seems like something.  I miss the calmness that my life had settled into befor PH.  I got up, took the kids to school, went to work, picked the kids up, came home, fixed dinner, spent time with the kids doing their homework and went to bed.  Every other weekend they were with their dad.  I got that time to myself.  Now, it's a day to day thing.  Nothing is expected anymore.  I'm having a difficult time learning to "go with the flow".  Especially when "the flow" involves me not feeling well. 

Our ladies "Second Annual Christmas Luncheon" with my church was this weekend.  The theme this year, "Expect The Unexpected".  That's all life seems to be anymore is the unexpected.  They made a good point.  We expect the bad and not the good.  I expect them both.  It just seems like I've had a bit more of the bad than the good.  I miss the "known".  It funny the things way things change.  You hear people complain about their hum drum lives.  I want that back.  I miss the comfort of it. 

It's difficult to believe another year is almost at an end.  2004!  I remeber when we use to have to write essay's about 2001.  All the essay's were filled with flying cars and everything being robotically or computer controlled.  I haven't seen any flying cars or robots.  (lol)  But I remeber it seeming like such a far off time.  And now here it is 2004.  I'll be 38 years old in just a few months.  I'm not one of those people who gets freaked out about age, but boy.  I look back at where I thought I'd be by now and let me tell you it isn't looking like I thought it would.  I never ever considered the possibility that I'd have some stupid disease that would be such a huge part of my life.  That my life would be consumed by doctors visits, hospital admissions, drug mixing, etc.  I thought I'd be consumed by other activities.  Things that are a little more positive. 

I started taking Paxil about 2 weeks ago.  I know it takes time to work but I'm so ready to not feel like this anymore.  I'm back on Viagra.  I finally see that it's working.  I'm still not sure how much and there is still the possibility that I'll have to go up a bit on the Flolan.   I'm trying really hard to get in the Christmas spirit.  It just isn't happening.  I pray that it does for the kids sake. 

I actually spent a few hours by myself today.  It was a nice change.  The kids both went to a Christmas Parade with some friends from church.  I spent some time listening to my favorit praise and worship cd's.  It was nice to just be.  The kids go to school but a lot of that time is spent sleeping.  I just can't seem to sleep well at night.  I fall asleep around 3 a.m.  Wake up for them to go to school and then go back to sleep til around 2 or 3 p.m. and wake up just in time to get myself together for their arrival at home.  Waking up this morning to go to church was difficult.  I yawned through most of the service.  I don't like it when that happens.  I do what I can.  I've been taking short walks with the kids in the evening after dinner.  They aren't fast and they aren't long but they are walks never the less. 

I don't seem to make it to chats the way I use to.  I miss everyone a lot.  I get there when I NEED to be there.  And as usual everyone is there to listen to me gripe, and to encourage me.

Time certainly changes things.  I'm already starting to wonder what will happen in 2004.  Hopefully it will be a better year for all of us!!

It seems as though life is bringing me to many challenges lately.  I feel as though I get one thing settled and another issure pops up.  At least the depression is beginning to ease.  Now I'm getting another cold.  Hopefully it doesn't turn into the flu. 

I was reading another diary entry today.  It's something I try to keep up with.  There is a woman who sounds a lot like I feel.  It's funny though, how we all think we are alone with thoughts that we think no one else has.  I'm beginning to realize that there is always at least one other person who has the same thoughts and feelings that I do.  We really aren't alone here at PHCentral.  It's nice to know.

Tommy is fighting a bit of depression.  The kids have been through so much.  Much more than they could possibly be expected to handle.  For pete's sake I couldn't handle it.  Dana seems to be holding her own.  It still amazes how different kids are.  That they can be raised in the same household and yet turn out so completely different.  I'm proud of both of them.

Time flies. It seems as though everything is continuing to go up and down. You know the saying that refers to not kicking people when they're down, well that's how I feel, I'm being kicked everytime I'm down. Someone needs to tell God that rule. Tommy is struggeling more and more with everything that is going on. I though his PCP would admit him a Psychiatiric Hopsital today. He's feeling guilty about his feelings. It heartbreaking for a mom to hear there baby say that they think we'd all be better off without them. Or that they have been thinking about killing themselves for the last 6 weeks. Everything seems to be overwhelming him right now. I know exactly how he feels. Don't we all. He wouldn't let me touch him for the last 24 hours. It was horrible. And all I can do is pray. And get him the help that he needs right now.I finally got through my whole ordeal with the infection. 2 Hickman catheters and a PICC line later. I hope i never have to go through that again. So now I am on Remodulin and Viagra. I hate Remodulin. I experience a lot of site pain. I wish I was one of the fortunate people that don't experience a lot of site pain. I can deal with it for a couple of weeks. I start Tracleer in 2 weeks. I'm looking forward to not having anuthing protruding out of my body. I just hope and pray that it works this time. Maybe with the Viagra it will. Sometimes I think I'm crazy. I've discovered that I handle consistancy a whole lot better. Even if things are consistantly bad. That just doesn't seem right to me. I would love to be consistantly great. That would be wonderful. I just don't like the unknown. I feel great one day and the next completely the opposite. I want to be able to plan my life like everyone else. You know, the "five year plan, and the 10 year plan". I don't like not being able to plan a future. It seems like everytime I plan something for a week from now, I get sick or something. I don't like it. Then I tell myself to just be greatful to be alive. It just isn't good enough. I start seeing a licensed theraist on Monday. Wonder how that will be??? Hopefully it will help me to deal with my life as it is.

trials

Well, it's been an interesting.  I was admited to the hospital yet again on February 16 for about  8 days.  CHF.  I came home on Wenesday, February 25.  On Thursday I had quite a huge scare.  I was sitting at the kitchen table cutting up strawberries.  I started to feel a bit strange.  A lot of chest pressure which turned into pain that went up to my jaw and gave me one hell of a headache.  Then I started sweating a lot.  I couldn't see.   I told my friends that something was wrong call 911.  That's the last I remeber til I woke up on the gurney.  Then I started vomiting.  (Poor paramedics)  I apparently passed out 4 times.  We thought at first a heart attack, then thought maybe either a embolisim or blood clot.  I had a VQ scan to rule out the latter two.  And a blood test showed no heart attack.  So now the are thinking it was an arithmia (sp). 

I was transported by ambulance to USC University Hospital.  They put me on Nitric Oxide.  I guess it gets rid of air in your blood stream.  They did everything to treat all 3 possibilities.  So I came home on all the usual along with Coumadin, Folic Acid, and iron.  I go see the EP Cardiologist on Tuesday.  Hopefully, he'll have some suggestions as to what to do.  They said this could happen again.  I guess a lot of people with PH die from arithimas. 

I'm feeling like I'm in a constant battle with depression.  Not liking that too much.  Not fun.  I'm on Effexor and Seroquel.  So far it's working well. 

My night in the hospital

Well, I went back to the hospital last night. I had another arythmia. I passed out, threw up, all the same as before. I find it interesting that your body eliminates evrything. I don't really understand. All I know is that last time it surprised me since no one had told me about this before. Anyway, the paramedics were called. I still find it puzzeling that just because someone has been doing medical stuff for "15 years" they still refuse to listen to their patient. The paremedic that I was graced with didn't find it necessary to listen to me about MY veins. I speciffically told him not to use the back of my hand since the vein would end up blowing. Of course Mr. smarty pants didn't listen to me. I also told him to use a smaller needle since my veins were so small. Of course he used a 18 guage needles which is the same size needle used to mix Flolan. It hurt like hell. And then of course he went to flush it with saliene and low and behold it blew. I've never wanted to cuss someone out so bad in my life. Well, maybe my ex. But no one since then. So then he went for the wrist. And I'm sure most of you know how that feels. He did get the vein. I was very greatful for that. But boy, was he sarcastic and rude. I did tell him he needed to learn to listen and that's when his comment "I've been doing this for 15 years" was spoken. My immediate response was "not on me you haven't." Got to the hospital and they told me that I would probably have to be treansported up to USC University. Thank God Dr. Shapiro told them that if I didn't have any more events I could go home. So after the usual tests...Chest X-Ray, Blood tests, EKG's, and 4 hours later, they let me go home. They were able to catch the event on the monitor. So hopefully a resoloution is in store for me. I don't really care what they do at this point, I just don't want to keep going through this. It's scarry.I felt pretty strange yesterday. I thought something might happen. You just never know if your mind is playing tricks on you or not. I was hurting more than normal yesterday. I don't know how everyone deals with this passing out thing. I had near episodes of passing out before but now that it's actually happened I don't like it. And some people say they know when...I have no clue. And I don't want to experience them so much that I lear to know when.I haven't written in my journal in so long. The kids have changed schools. They are both really excited. And their experience in the new school has been really positive. It's great. At least one thing is going right for now. They've been excepted with open arms. I love that my kids get along with so many different types of children. There isn't that prejudice that a lot of adults have. I guess that's part of their purity. They are both growing a lot. Tommy is now towering above me now. He looks a lot like his dad. He's very handsome and the girls are calling in groves. Of course I've told him that he is to young to date. He has respected my postition on it and has asked them all to stop calling. He still talks about them but he doesn't ask to go out. He doesn't see the point either. I thought that was pretty mature of him. I'm still working on his not being such a mama's boy. I love that he is affectionate, he constantly tells me that he loves me. But he has this need to hug me every 15 seconds. Of course I'm exaggerating. But I do want him to be able to survive without me. He told his counselor in front of me that if I died right now he couldn't go on. I don't like that he is that attached. Dana is growing also. Not as fast as Tommy. But she is getting there. She is just a couple of inches shorter than I am. Dana has discovered boys. She's also been respectful of me as far as the too young to date thing goes. I don't see the point. They don't drive, I'm sure as heck not going to leave my 12 year old alone at a mall with some boy I don't know. So what is the point. I don't understand parents that let there kids date before they are 16. I don't mind the group dates at 15 but I think we're just asking for trouble. Dana did really well her first semester of school and then her grades slipped. I'm hoping this new school will give her the fresh start she needs. She is a wonderful girl and I'm enjoying both of my children as usual.I was so proud of them last night during all of the stuff that was going on. They called the paramedics, got my flolan ready to go, got the emergency envelope that I have on a shelf in my room together, waited for the paramedics and gave them all the information that they needed to help me, they turned up the O2 to 6 like they are suppose to. They both did great. I wish they didn't have to do it but they did great.My lungs hurt really bad today. And I'm pretty achy I think from tensing myself up. I got pretty scared. I want my life to return to normal. I've been seeing a counselor for the depression. I realized that I really haven't dealt with all I've had to give up. My life is nothing compared to what it was. I feel like I've given up myself to fight this disease. I feel unproductive. That's really important to me. I expect a lot from myself. And I can't give what I expect. It really frustrate