Well, I guess I'm really doing this! Bear with me at first as all of this is still a bit new to me. My name is Michelle, but as many of you know I prefer "Mickey". I am 29 years old soon to turn 30...Praise GOD!!! I wont write too much tonight as my life would either scare you away, totally confuse you, or simply bore you to pieces. For tonight the bottom line is I am very scared, confused, and slightly angry. My medical problems probably began 11 years ago when my son was born and I developed a slight thyroid problem. Then 5 years later I developed really severe problems with depression and anxiety. (Will get into that at a later date) About 2 years ago I began having chest pain and sob. My family doctor immediatly sent me to a cardiologist who diagnosed Right Ventricular Hypertrophy. He said it was a common problem and the pain was probably due to the size of my "breast". This past December the pain and the passing out got to the point that I could not bear it anymore. My ankles had swollen to the size of my hips, and I have been miserable. Now after 3 months of testing and testing and more testing I have been diagnosed with PPH. Today I learned that the "condition" is worse than they originally thought and they are admitting me to the hospital tomarrow. Also they are pushing for me to make a decission about Flolan. Although I like the doctors who are treating me I don't know if I am ready to make any decisions like this. My pressures from the heart cath were 125 and I guess that is pretty high. I just dont understand much of this. Four months ago I had a semi-normal life. Now I crawl to the bathroom and have to have people wait on me pretty much 24/7. How did this "THING" take over my life? And why my life? I guess I'm not as opptomistic as most of you, and I have a real hard time "keeping the faith". I'm hoping writing this will help me in some way. Well, 4 hours till we head to the hospital I should lay down. I hope they can find the cause for the passing out, but I really hate being away from home...... "MICKEY"

We got back from the hospital yesterday. There is no place like home! My stay in the hospital was very uneventful. Too many doctors with too many uninformed opinions and none of them wanting or willing to make a decision. It was all one big disappointing mess. I doubt if I'll be going back to them. The only thing they agree on is that I do have PPH and need to be on flolan. That is another decision I have not made yet, but if I were to decide I would not be going to UIHC for it. Back at home life is CRAZY but semi-managable. Kerry (my husband) is struggling to keep things together. That is kind of funny, 4 months ago we had decided to split up and just be friends, now we are closer than we have been through our 12 year marriage. God has really taught us a lot through this disease. My 21 year old step-son is having a hard time dealing with all of this too. A few weeks before I got the diagnosis he had screamed at me that he wished I would just die, now he feels terrible! He knows that I still love him and in time I pray he will stop blamming himself. Like I said he's 21 now and can purchase alcohol and is using that I think to deal with a lot and I am worried about him. My 11 year old Zachary seems to be doing okay with this most of the time. He has a wonderful support system through his school and we have allowed him to be involved with almost all of the discussions and preperations. Most of the doctors are real good about taking time to talk to him on a level he can understand. Today Kerry and I are going to discuss with my family doctor the fact that I am NOT comfortable with UIHC at all. Hopefully together we will come up with a better plan. Thanks for listening to me mumble...

Okay, so I think I might have made a decision about Flolan. I know that I deffinietly need it but am still nervous about the doctors here. However, being the realist that I am living on the income we have there is not much hope in going anywhere else. I am already relying on the help I get from my 11 year olds paper route money to provide gas just to get to Iowa City. I can't take more from him or from the rest of the family. They all already make to many sacrifices for me. The 512 dollars I get from my SSI just doesn't go far when supporting four people. The car is falling apart as it goes down the street and the bottom line is it's time for me to suck it in and find my way back to giving it all to the Lord and letting him handle it because I just can't anymore! Ok enough negativity that is not what I want to concentrait on today. Like I said before this disease has done some good for me. Kerry is being so good to me. He gets my breathing treatments ready and he is always willing to help me in any way he can. He cries with me he prays with me and he even makes everyone leave me alone when he thinks I need it. The other BIG change is my relationship with my parents. First you need to understand that I am adopted. I was a year and a half when they adopted us (my sister was 3). For years we have had a very strained relationship. Partly because at 17 I married Kerry who was 33, and I was extremly out of control. At any rate the past several years I have felt as if I didn't matter to them anymore. Especially since I have completed my search for my biological parents. Anyway, in the past few weeks the Lord has given me my Mom and Dad back. They are being very supportive of me and are trying to help in any way that they can. I regret all the lost time with them, as well as with my biological Dad and siblings. I am so greatful to finally know that my adoptive parents do still love me though because I love them more than anything! Another positive that is comming out of this is my relationships with my siblings, most of whom I have not met yet,I have been communicating with them via telephone and letters for over a year now and now I might actually get to meet at least one of them-PRAISE THE LORD!! So in a VERY small way I am almost thankful for all of this. I can also say now for absolutely sure that I am going to heaven when my time does come. This assurance I owe mainly to Ron who posts the daily devotionals with PHInspire...Thank you.....goodbye for now

The depression is past (for now), I am done feeling sorry for myself and am ready to face the world with a new outlook. Kerry is still trying his best to help me as best he can, God bless him I know this is terribly hard on him. In a lot of ways though I think it is making him stronger. A few years ago he couldn't have faced any of this without the assistance of alcohol, now he claims he doesn't even want it. Justin (my step-son) has stayed sober all week, which is good for him. I'm praying that he gets a job soon and becomes the decent young man we all know he is capable of being. I wish he could have the confidence in himself and in his talents that I have in him. The boy is gifted, he is such an artist, I wish he could put those talents to work. Zack is doing GREAT as always. He has begun sticking up for some of the younger kids at the bus stop after school so he is getting home a few minutes later, but that is okay I guess. He still gets his papers delivered, does his homework, takes care of me, and practices for band, so I can't complain about him. He also still finds time to help others who are in need.. Now him I expect great things from someday! Tonight Kerry and I are gtoing to a meeting at my Aunts house on magnetic therapies. I hope I am up to it and don't pass out. I haven't been to her house in 12 years. Zack is going to go visit one of his sick friends while we are gone, so we all have plans for tonight. Tomarrow we head back to Iowa City for more appointments, and to tell Dr. Cadaret that I will go on Flolan. Then on Saturday, if I'm up to it we will do something to celebrate my birthday. I can not believe how happy I am that on Monday I will be turning 30. Lord give me another 30 years.....

Happy Birthday to ME! Turning 30 wasn't as awful as I had once thought that it would be. In fact it was actually a relief. I made it! The way I have felt since the first of the year I didn't know if I was going to or not. Kerry took me and Zack out for dinner and then to Wall-Mart to spend some of my "Mommy" money. Of course, I ended up spending it on Zack but isn't that what Moms do? Kerry has been a sweetheart all day today. I've been try6ing hard not to ask to much of him but sometimes I find I have to depend on him pretty heavily. With him being diabetic and having all of his other problems I feel so guilty for putting all of this pressure on him as well as the rest of the family. I'm praying that the flolan will help and they will be able to go back to leaning on me again. I do not like being a burden to anyone and I am so afraid he will get frusterated and leave. Zack is in denial (I think) he has been awfully mean lately and that is not my Zachary! I still fear for Justin, I know the Lord has big plans for him but he really scares me. He needs a job or something. He is on a self-destructive path and I dont like it.

Tomarrow Kerry and I head back to Iowa City AGAIN. This time to see a social worker and to see the hemotology department. I really get tired of going back and forth. So I know Kerry has to be hating it too, but he would never complain about it of course.

Well, It's late and I am really worn out, but before I say goodnight there is one other thing that has been going on lately. Ker and I have both had a huge outpouring of support from people who have read these. The friends we have made in such a short period of time mean more to us than words could ever express. Goodnight all..MICKEY

What good does it do????

Man, have I been cranky lately. Fighting with everyone about nothing. What good does it do? Now, I feel bad, Kerry feels bad, everyone is on edge. Just hasn't been such a good few days. I get so irritable lately. I feel like I've lost control of who I am. I'm not the Mickey of years past that could do anything, go anywhere, and handle all the worlds problems. Now I am this crippled up shell of the self I use to be. I hate being a burden to everyone. I hate asking for help, but they can not read my mind when I need things either. If only I could get over this stupid pride thing and learn to reach out more than maybe we could all get along better. I know that if I am missing the old me this much they must miss her terrible. However, she is gone and we all must grieve the loss. As for the new me.... Well, I guess we will all have to get to know her together and make the best of what she has to offer. I guess, I should stop rambling and complaining. Oh and family, I'm sorry. No, Zack this does not mean that I hyave forgotten that your math grade is down so low.

bye 4 now MICKEY

Hello diary, Where do I begin??? Life has been so full of uncertainities and confusion lately. Things have finally began to settle down a little. Not that I have any one thing to credit that to, other than maybe simple acceptance. I am learning to accept that I am sick, and not just lazy and out of shape. For a long time I have felt guilty for not being able to do the things a wife and mother should do. I think I had allowed myself to believe that If only I could get myself back in shape all would be well again. Then the harder I pushed to get "back in shape" the more pain I was in and the less I could actually do. So here I am, I am sick, I've accepted it and now I am learning to live with it. As a family we have accepted that I do need the flolan and are schedualed to go in the hospital next Monday (the 19th of March), I will NOT change my mind again. I have accepted it pretty well, so has Kerry. We know now that pressures of 125 really are not normal. He (Kerry) still has a lot of questions about the whole thing but I've decided just to let it go and accept it. Although I agree that the doctors and the nurse cordinator should have explained things better, my theory is that we will find out soon enough. Everything we know about flolan we have learned from PHCentral. Okay once again I got off the subject. ACCEPTANCE I am learning to accept things such as the step-sons bad habbits. I pray for change in him, but I know now that he will not change until HE is ready. It still breaks my heart to see him heading down the road he is traveling on, but I accept it and put it in the Lords hands. I have even learned to accept the snow and ice that I get so tired of. The only problem tonight in my little world is accepting that it is time to turn this computer off, wish you all well and put this tired body to bed......

Hello world, Today is a very good day. My 11 year old Zachary is actually, doing as he has been told.(Not real big news he is a great kid) The step-son is away with his friends, as he always is on weekends. It is unusually peaceful around the house today. I have learned that comfort, support, and advice are out there if only one is not afraid to ask for it. The anxieties I had allowed myself to build up about this disease have almost totally demished. The fear of the dreaded flolan is gone as I have been told it's not the life deminishing monster I was afraid that it would be. Compaired to the life I have right now anything would have to be an improvement. Kerry is being especially cautious with his words and actions today. This can only mean one of two things #1 He really loves me and knows I need to have a good day. Or #2 He is up to something! LOL (In his case those who know him know it's probably a bit of both) I go into the hospital Monday morning. The plan is to do another RHC to check the pressures and how they are being effected by the water retension. If the water retension is to great they will admit me to decrease it. If not they will go ahead and begin the flolan. Either way I will have a new perminant accessory by the time I come home in a week. I'm thinking this probably isn't what my Home Economics teacher meant when she said not to be afraid to accessorise an outfit. Anyway, while I am in the hospital, I am hopeing Kerry will contact my brothers again and see if there is any way they can make plans to come meet me. I have done MOST of the things I have set out to do in my life. That's just the way I am. I try my hardest to make the impossible - possible. NO ONE thought I would ever find my biological mother. I found her, met her and her other 5 kids, and moved to New York to get to know her. Then everyone said it would be IMPOSSIBLE to find my Dad. Guess what? I did that too. Found him, met him, and love him very, very much. Now all that is left is to meet the rest of his kids. I won't hope for too much right now, but the two brothers of mine that I have come to love, respect, and admire over the phone and through snail mail, mean so much to me I just HAVE to meet them! I will too..... in time. For now I am tired but it is still a great day. I love the world! G'day....... "MICKEY"

Diary, Now dont you start crying on me just because I open my mouth to speak. I swear you could open a fish hatchery around here with the river of tears that have been flying our way. Kerry and I are leaving today to go to Iowa City for the Flolan stuff. Last night the step-son was confronted by a drunk down town and ended up getting beat up pretty good. He was the bigger man though he decided at the last minute not to fight back. Being on parole he knew they would throw him back in prison and he knows "Momma" needs him to be here to help out. So maybe my prayers are being answered he seems to be using his head a little bit more. Zack finally stepped through the door of denial into reality this morning. He finally broke down and now I fear his tears and emotions are more than I can handle. I was reminded of how when I had my gallbladder out we all told him it was a minor surgery with nothing to worry about. Unfortuniatly, following surgery I decided that it was too simple and quit breathing as they tried to wake me up. So that is the part we are really afraid of, me not waking up. We have lined up plenty of support for Zack and he knows that if he starts feeling really down he is to get on here and look up some fellow PPH'ers. Now, Kerry is another story. For years I really wondered why we stayed together. Abuse was the name of the game for a while, especially in the early years when he was drinking. We got past all that thank God! Then it was cheating... again we got past it. Then for the past few years we have just kind of co-existed. Along the way we became best of friends. Then -BOOM- the PH thing entered our lives. It's funny the effect the words uncurable, terminal, fatal ect have on people. In 12 years of being married I dont think we were ever as in love as we are right now. However these new found feelings do come with a price. The man I have always thought of as being Mr. Tough and independant is weakening and needing someone to lean on. So now I must be strong for all of them. I can do this I am a fighter and I know that they all need me. So as we head out I must suck it in and be prepaired to fight this thing. Knowing there are those of you out there to support and encourage me and my family helps a lot. The knowledge that so many of you have so successfully traveled this road already is comforting. I send my best to all of you, and will keep you in my thoughts and prayers......... "MICKEY"

I am alive!!! I got started on Flolan this week. I am REALLY glad I went through with it. It was only half as scary as I had expected. Kerry, was there to hold my hand and support me the whole time.... Or was it me supporting him? I forget sometimes. Kerry is handeling it much better now though. All the fears and concerns he had prior seem to have faded a little bit. The procedure went fairly well. I had a few minor problems with the hospital nursing staff, but I got through it. Unfortuniatly, I still have not learned to bite my tongue and I did get one VERY incompetent nurse in a lot of trouble. I am doing pretty good. No SOB at all yet!!!! I am worried about the line, but am being extremly cautious with it. Well, we are taking the weekend off as family time so I should get going. Just wanted to document that I am alive and all is going well so far. my best to all... "Mickey"

Hello Diary, TWO SIDES TO EVERYTHING... Okay on the one hand I have PPH. It is a fatal disease, I am going to die! I do have this perminant pump attached to me. People do stare! Poor me life has dealt me such an awful hand!

NOT!!!!!!

On the other hand, yes I am going to die. Everything that is to be born must someday die. I have been given the chance to make the most of the time I have left and my eyes have been opened up as to how precious life really is. I wonder how many people go through life saying someday they are going to do this or that and never do any of it because they figure there will always be time? I am no longer one of those people because of this gift of enlightenment that I have been given. Yes there is the pump.. honestly it scares the **** out of me. God must have known this too, as he left Kerry with me. Kerry has such a good grasp on this whole pump thing. Not me I look down and get sick to my stomache from the sight of it. For now, until I am ready Kerry will handle it. I must admit even though it scares me I know that without it I would never be able to do any of the things the old me use to do and I REALLY want at least part of the old me back.

Okay I have babbled enough... Goodnight all "MICKEY"

Okay Diary lets try this again, this time my long nails will try to only hit the submit button once!

Life is going so well. We went to the er yesterday to see my family doctor about an infected rash around the hickman. I guess I am allergic to the tape. Ouch - It REALLY hurts. For me that is saying a lot. Iv's, ABG's, shots, none of that bothers me, - tape - now thats another story!!!

The family is getting really excited I am closer to being myself than I have been in a while. I am up walking, even skipping occasionally. I still haven't gotten up the nerve to attempt steps yet but that day is comming. I feel semi-human again!!!

I might be off-line for a few days but I am okay. We are having minor internet difficulties and are trying to resolve them so dont worry I will write again soon. LIFE IS GOOD AND GETTING BETTER WITH EACH BREATH. "MICKEY"

My computer finally got over its illness this morning, so I am excited to be back in touch with all my friends. I have been keeping myself pretty busy lately. I feel like I have totally slept through the last 6 months of my life. It is so good to be up and doing things again. It isn't exactly the way things used to be but that might be good in a way too. As far as the PPH goes I LOVE the Flolan but HATE the pump the tubes and all the tape that is used to dress the hickman site! I'm adjusting I think.... Enough about that, I don't like to think about it too much. I am doing GREAT! Kerry is handeling things pretty well too. He just smiles and agrees with me most of the time. He laughs a lot more now than he has for a long time, so I figure he is doing okay. Zachary began selling candy for school today. Last year he was the top sales person for the whole school so hopefully he will live up to his reputation once again. I have faith in him and in the fact that our neighborhood supports him pretty well. He is also going to take it to the hospital in Iowa City when he goes with me on the 10th. Justin is doing pretty well also. He is growing up right in front of our eyes FINALLY! He has decided to check into medical assisting classes- I am so proud of him!!! So as you see all is well and I love life once again.

Hello Diary, Well we are still riding the PH roller-coaster. We have our ups and downs, gee maybe that's just life. My Flolan was increased today, still having minor problems breathing but have faith that it will go away.

I have learned so much lately, been given so much to think about, yet my mind still goes blank! A friend told me today that PPH may run her life but she doesn't want it to BE her life. Huh? Is that possible? Maybe I am just a lot weaker than others with this disease, I don't think that I am as strong as the others that I talk to on here. I don't deal as well with this "PH thang". At Christmas, just a few months ago, I was just a fat, lazy mom with an asthma problem. Now a few months later I sit here with a tube comming out of my chest and an incurable disease. A few months ago everyone yelled at me for not being up doing more. Now everyone gets upset if they think I am doing too much. PH has, for now, become my life, or at least a major part of it.

Several other friends have told me lately to just be honest with myself and my family about all of this. How? See, I am their piller. Poor little Zack, he is strong and deals so well because Mommy does. If it's no big deal to "mom" than it's no big deal to him. Justin is the same way, only worse. If Justin knows things are bad he wants to go out looking for someone to take his frusterations out on. Plus Justin has that awful guilt factor. He is the one who had wished that I would die. I know it is not his fault but how do I tell him that? Kerry is the same way, so many regrets. If he knows things are not well he is not well, he feels what I feel or what he thinks I feel. So I portray to everyone, as best I can, that I am fine with all of this. I am not okay with it though, not all the time I'm not. I get sad, sometime I want to cry, scream,and break things. Until I know how to do otherwise I will continue to wear this mask of happiness and hope noone sees the tears trickling down onto my keyboard. goodnight.....MICKEY

Hello Diary... Night time is upon us once again. It is once again 2 in the morning and I am scared to death of falling asleep. Okay I finally admitted it I fear going to sleep! Don't ask why for I have had this problem for some time now. I do not understand it but I am learning to deal with it. I fall asleep easily as the sun comes up, but in the dark of the night I just can't! It's not so bad, sure I'm tired a lot, but think of all the quiet time I get to myself. Sometimes I just enjoy the silence.

I feel like talking tonight. I feel like remembering. Do you feel like listening? If not, don't I will type anyway.

My life has been funny.. not ha ha funny but wierd, unusual type funny.

I grew up knowing that my sister and I were both adopted. I knew she was my sister, born of the same mother with different fathers. I also knew the city and state I had been born in. Lea was 3 and I was not quite 2 when the adoption took place. We were fortuniate we got to stay together. We were given to whom I now believe to be two of the most wonderful parents in the world. Growing up however, things weren't so clear to me. In Florida where we lived till I was 10 things were ok. Everyone knew we were adopted and it was no big deal.... just a part of life. Once we moved to Iowa all of that changed. The small town curosity and everything, kids that age can be so cruel when they don't understand things. Anyway that is when my curosity began. I decided I just had to know who I was and where I came from. As the years passed my determination grew into an obsession. Meanwhile I became slightly hard to handle. With all I had put everyone through I think my parents were almost relieved when I asked if I could get married at 17. Deep down I didn't really think that they would go along with it, Kerry was 33 that is a 16 year age difference. Now, looking back I am so glad things worked out the way that they did. About a year and a half i8nto the marriage Kerry and I sat down and decided that we would, together, resume the search for my biological family. My sister fought me every step of the way insisting that she not want to have anything to do with the search or with whatever or whoever I found. The state that handled the adoption fought me even harder. Refusing to give up any decent information and what I could get out of them contradicted itself. Yet, we continued to search and to hope. At times I'd get frusterated and pack all of my information up and put it away for a while, yet somehow the folders always made their way out again. By the time I was 22 I had uncovered my birth mothers maiden name and at least one of her married names. Through a lot of prayers and a little deception I had picked up on a generalized area that I thought she might have come from. I called information for that area and once again, as I had done so many times, I got the numbers of everyone sharing the last name that I believed to be her maiden name. I called the first one and got a machine, called the second and the lady thought that I was insane. Then before I could do anything else the state of Florida called me to warn me of the fact that searching as I was doing was illegal. Frusterated, upset, and angry I threw the folder onto the floor. I was ready to pack it up once again. As the papers flew to the ground out slipped the paper with only one number left uncalled. That darn curosity gets me every time, I just had to make that one last call. As I told the lady I was looking for a Velma Dibble, I could feel the coldness of her response. "I don't associate with that part of my family" she replied. Knowing she was going to hang up on me and my chance would be gone forever, I feel to my knees begging her to stay on the phone, crying to her that she was my only link to my mother. I was hysterical at this point, Kerry (being the cool headed one) took the phone from me and explained to her the situation I was in. The woman on the phone turned out to be my first cousin, Anne. She did put me in touch with my mother, and Grandmother ect. I decided I had to meet her right away. "MOM" it turned out had 5 other kids all younger than me. I got to meet them too. Visiting wasn't enough for me I decided I had to live near her. There is a lesson to be learned here #1 Don't always trust first impressions, and #2 Don't make snap emotional decisions. My three years with my mother were the worst of my life! I love her for giving me life and I love her even more for not makeing me grow up with her. Finally, I escaped back to Iowa, to my family. The family who had known me all my life and loved me inspite of that fact. Yet somehow I was still alone. I still felt empty, something wasn't right. That's right, I had only found half of the puzzle pieces. So I began the search for my father. I never really expected to find him. I knew that like me, my mother had chosen a much older man to be her husband so many years ago. My luck he was probably dead. Then again I figured at least there would be a tombstone I could place my flowers on. I was also armed with the knowledge that he had had several children from marriages prior to my birth. Once I FINALLY found him I got the one response every adoptee dreads hearing. He said he remembered me, and would love for me to write him but he was sorry there was no way he could be my father. I knew that he was the facts were all right there. So I wrote to him...... and I waited.... and waited. In the meantime I began getting sick. Shortly after seeing my first cardiologist, I wrote to him again. I explained to him that I understood him not wanting me to be a part of his life. However, in my heart I knew he was my father and I knew that his other children were my siblinga and shouldn't it be up to them weither or not I be a part of their lives. Four days later my phone rang.... "This is your Daddy" followed by a lot of tears on both ends is what I remember the most. He explained to me that his hesitation was due to the fact that he had given up on ever finding me and he figured that it was just my "mother" trying to play more tricks on him. He sent me money for a bus ticket and Kerry and I went out to see him immediatly. I left Zack behind partly for school and partly because I didn't want to subject him to the same nightmare we had encountered with "HER". During the 5 days that I got to spend with him I learned that my mother had taken me from him. He had never forgotten me or stopped loving me. You know what? I LOVE HIM TOO!!!

My goals now are to meet my two older brothers and my two older sisters, whom I am in regular contact with via the telephone and the postal service, and for my son to finally meet his Grandfather.

Thanks for listening Diary.... I still miss him but I feel better now. "MICKEY"

Hello again, Well it's not as late tonight. It's only 10 something, maybe I'll sleep earlier tonight. Nah-probably not!

Funny thing happened today. I've been pretty down lately, missin my Dad and stuff. Well, he called me today!!! I so love hearing his voice. He told me that my uncle is back at home (out of the hospital). He is suffering many of the same symptoms I use to have. I also recently found out that these heart problems run in my fathers family. Gee, another GOOD arguement for adoption reforms.... a need for medical information! Okay, I will try to avoid the adoption talk for now. Dad also told me that his best friend passed away last Friday. He was almost 89 years old and had lived a very good, happy life, but, Dad still misses him a lot! My Dad is 75 and he is raising my 12 year old niece. I think that says a lot for him at his age, heck I'm only 30 and at times I think my 11 year old is more than I can handle. Dad also had to tell me all about the seafood he has, the fishing he is going to do, and the meal he would be cooking for me if I was there. It's funny listening to him makes me feel like I'm a kid again. It kinda gives me a chance to relive, in my mind, the childhood I would have had if we hadn't been torn apart. I love my Dad so much.... I wonder if I tell him that enough?

I'm such a lucky person. I have the three most wonderful fathers in the world. My birth father, whom I'm growing closer to every day. My father-in-law whom has been a major part of my life and my heart for the last 12 and a half years. And of course, my adopted father whom has been my life and my heart for almost my entire life. I love them all so very much.

Dad calling was of major importance today, it got me through a rough period. This morning Kerry had to go to his Dads house. Zack and I were here alone. I had come out here to the computer and out of the blue my ears started ringing, I started sweating really bad, my chest was pounding, and the world kept going black. Zack and I didn't know what to do. We called Justin, I begged him to come home, but he said he was too tired. Zack had to go help out at an Easter egg hunt for the younger kids so I was left here all alone. I slept a big part of the day. Finally Kerry came home and then my Dad called. I felt better! MICKEY

Monday, April 9 2001

Hello Diary, This is my place, here I feel at home. This is my place to vent, to unwind, to just be me. For that I thank you diary for being such a good friend to me. You always listen and never criticize. You are always here waiting for me even when everyone else is asleep. And to the few others that find themselves reading this, thank you too for your continued support and encouragement. You are the ones who know me now, you understand the things I'm going through and the feelings I'm having. My family and friends, I'm sure they try, but they just don't get it they don't truely understand. So again THANK YOU.

A harsh word said in anger may only take a second to spout out, but they effects can last a lifetime. Once an angry word is spoken it can never totally be taken back. "I'm sorry" and "I love you" is nice but it can never cover up the hateful words we have said. We all make mistakes and say things we regret, but maybe we could all learn to use a little more self-control over our tongues. Just a thought.... MICKEY

Here I am once again. I have been feeling pretty rotten lately. We had a pump failure the other night and that made it even worse. My headaches have been so bad I dont want to open my eyes at all, and the headaches make me sick to my stomache. My feet hurt so bad I can barely walk the 15 feet to the computer. Plus, now my left side goes numb perodically like it use to. I am due for a Flolan increase tomarrow so hopefully that will help if not I don't know what I'm going to do.... This is terrible!

I want so badly to be normal, to do normal people things, yet I can't. Every time I try I seem to get worse. I'm getting depressed again, and thats not a good thing for me. I really need a good cry... so I shall sit here and cry with you. I want the cath out of my chest so bad, it hurts really bad. The dog pulled on it and it is really hurting. Everything just seems really super terrible.

To make everything worse it seems like everyone is always mad at me. Kerry and I argue a lot. A part of me thought he had purposely messed up the pump. I have even accused him of mixing my Flolan wrong to try to kill me. It's been many years since he was actually like that but I have just been really miserable. It just seems like he would rather talk to ANYONE but me. I know I am just being paranoid but I cant help it.

Ok I just read part of this..... I am going to end this now soI dont upset anyone else. Goodnight my friends MICKEY

Hello again my dear diary,

I had decided that I wasn't going to write in here again until I could be a little more positive. Then my e-mail problems began.... So here I am. I can recieve e-mail no problem but am having problems sending to certain people. So I decided to go ahead and write in here again.

My doctor in Ia City when I asked him what to do for pain he said get a script from my doctor... But he never gave me one, so my family doctor did Tylenol with codine. I'm not taking it yet, a little scared, but will have to do something soon.

The Kerry situation is still rocky but getting better. We've been through so much the past 13 years we get through just about anything. We are a pretty good team most of the time. I just need to let go of a lot of stuff and look to the future instead of the past. However, with life beeing what it is right now I dont like looking at the future either.

I'm still fighting the depression all the time. A year ago my solution to being this depressed would have been to burn or cut myself, that is why I was on SSI to begin with. Now I know I must fight those urges. It's a daily battle sometimes but I can always count on God sending someone along to help me through it. I promised my little Zack a year ago that I would not burn myself again and I am keeping my promise to him!!

Ok I'm going to go now, I might be back later... Thanks to everyone for the support...... "MICKEY"

I'm back!!!

Not that I actually went anywhere, but I am back to my old self once again. Sometimes I let things really build up on me and I just dont know how to let go of things.

I never realized so many people read these things until you all started writing. I will forever cherish each and every letter and card that I have recieved over the past few weeks. You support, encouragement and prayers mean so much to me.

Physically I am hanging in there. I have had 2 pump failures, which makes Kerry very MAD. I figure it's just part of this whole thing. I get more mad about the fact that it is harder to breathe than it was before Flolan. And YES I am still refusing to use the O2. I just cant bring myself to use it. I'm not against oxygen just not ready to deal with the nose bleeds that I get from it. The headaches still come every night, no relief in sight for that I guess. However, the foot pain is totally gone the "mag-steps" really work. In fact, Kerry wears them too. He is a diabetic and has suffered diabetic neuropathy for years leaving him with no feeling in his feet. His feeling is back and his feet seem to be comming back to life more and more. I know it sounds crazy and I wouldnt have believed it myself, but if it works.... let it work!!!

The candy sales at Zacks school will end this Wednesday. It looks like he will be the top sales person once again. I am so proud of him. He handles everything so well most of the time. Once in a while things will get to him and he'll have a small cry then he's over it and ready to conqure the world again.

Kerry is still my knight in leather armor. He gets really angry but he is working on not directing it at me so much anymore. We both needed some time to vent. I just keep reminding myself what all of this must be doing to him. Not necissarily because he has to run the house now, he's been doing all the manual stuff for a LONG time now. I'm more concerned about the other part of it. Handeling both of our boys emotionally has to be a scary thought to him. The way it is if Justin is having real problems emotionally "momma" (that's me) talks him out of his stupidity. Kerry's reaction is a much more hostile approach. Like last night, Shad brought Justin home. When they woke me up Justin was in the kitchen curled up in a ball on the floor crying. Kerrys reaction was one of hostility so he stayed in the living room. Now granted, in the end, to me, it was all over silly stuff. You know girls, rejection, rumors, Kid stuff. But to someone Justins age who wants so badly to be loved and accepted it was just devistating in his eyes. Well, of course I was patient and listened to him and then when he was ready I hit him with some cold harsh facts and he got over it. When I am gone how will Kerry handle these situations? Zack isn't even to the heartbreak stage yet. Facing that alone has to be scaring Kerry too.

Wow didnt mean to go on like that. I keep trying to think of incrediably witty things to say but I'm just not that good at it. So until next time, breathe easy and get some sleep for me... MICKEY

Hello again my dear freind,

I am doing much better tody than I have been recently. I'll tell you when you think you've got things bad you sure dont need to look too far to find someone who has things worse.

Today has been a pretty good day for me. I've spent the whole day working on my computer. I got letters written to my brothers and to my father which I had been putting off for a long time. Beings I haven't really met my brothers yet and I've only spent five days with my Daddy, I wasn't sure how I was going to explain all of this PH "stuff" to them. Once I sat down and began writing it was pretty easy. And I am feeling much better now that it is finally done.

Kerry is having what should be for him a roten day. He is holding up with an incrediably strong emotional front for my sake. He got a decision back on his Social Security again. He's been fighting it for over six years now. They've denied him again! At his trial that he just had in January, Social Securities own experts testified that he can NOT do any type of work, but the administrative law judge has the right to ignore their own witnesses. Doesn't make a whole lot of since to me. Kerry tried to call his lawyere as soon as we got the letter but of course he was gone for the day. He was really upset at first and he started to blow, but he got his anger under control. I am so proud of him. He goes through a lot, dealing with me and the boys and the rest of our families, but he always pulls it together. I'm glad we decided to stay together in January instead of giving up.

So today was a good day. I have my rock to lean on (Kerry), and the water that covers my feet in comfort (my boys)

Goodnight...... MICKEY

Hello again, I'm not having the best of days today. I know, for me whats new? I'm actually in a pretty good mood just gettin a little bit frusterated with things. I was going to come on and read my e-mail and just chill for a while but of course, today the server decided to not let me in!!!

Oh well, I could use the time to vent a little bit. Today I'm gonna talk about "Grace". About a year ago (little more than that) I met this woman and her two children. The kids were filthy, outspoken, and in general just too much for one person to handle. Now, I love kids and people in general. I felt so sorry for this single mother, I didn't know what to do. Well as time went on I donated my babysitting services to her. At the time I was also babysitting for 2 of my sister kids totally free, as well as another family of 4 VERY hyperactive children for one dollar an hour. The house was pure chaos! Being slapped by children all under the age of 8 and being called names I still would never say in front of my mother, became daily life for us. Now, keep two things in mind #1 we live in a teeny tiny 1 and a half bedroom house, #2 I was incrediably sick and NOONE could explain to us why. Life was, well lets say, interesting.

Ok back to Grace and her 2 problems.....ooops did I say problems? You know I meant children. Anyway, she came over one day all in tears, again my heart is just tooo big sometimes. She was being evicted from their home. "Move in here for a while," was my suggestion. And they did! Oh at the same time Kerry and I had become wildlife rehabilators for sick or injured baby animals. As time went on 2 absolutely adorable baby squirls came into the home. The rest of their family had been killed including their much needed mother. We loved them squirls, when we got them they were totally hairless. They were thriving quite wonderfully. Time went on and all the babysitting and kids and dealing with the parents was more than taking it's toll on me. So about this time a year ago we got a call from Justin, his parole had been approved. I sat Grace down and explained to her that she had been here over 3 months and it was time they find their own place. The day we went to pick Justin up she was moving their stuff out. When we finally got home with Justin we knew immediatly that something was wrong. One of our squirls was dead and the cage was open. After finding out that Dominic had done it, I told Grace to take the kids and leave. The next day they were back, so while babysitting I asked him why he had killed my squirl. His answere really scared me, he said "the noise it makes when i step on it I like that" this response was followed by undescribable laughter. Keep in mind this is a six year old. He later told me he could take things from under my sink and kill ME like he did the baby squirl. Things changed dramatically after that, I got even sicker, and totally stopped babysitting. Grace had disappeared from our lives. Until a few months ago..... She started commin around again. Only this time she was staying outside talking to Kerry leaving me alone. Finally one day she came in and we really talked. Now, it's not that I dont like Grace she is a person in need of guidance and assistance I'm just not sure we are the people to hold her hand anymore. Deep down I know she means well, but.. UGH. Let me continue. So she started comming around a LOT. This change took place mostly in the time period of me being diagnosed and going on Flolan, so I don't think I was aware of how things were changing. Thiungs like her kids hanging all over Kerry, and her sitting next to him practically on his lap I somehow missed right at first. Then while I was taking my very first post Flolan bath by myself I heard her talking to Ker. I dont remember the exact conversation but I do remember her refering to him as "Ker Bear", NOONE but me has called him that in the 13 years that we've been together! I screamed for Kerry to come in the bathroom and quite frankly i was pissed.(excuse my language) He promised to talk to her about it, I'm assuming that he did. Anyway in the past month she has been here more and more, even spending the night every Saturday. She does help Kerry with some small chores around here. But then I have to listen to "didn't I do good helping Kerry?" like 50 times a day!!! Nothing like throwing it in my face that I'm not capeable of doing these things myself! I am however painfully able to cook for her children whenever she wants me to, even when my family has already eaten! I am also capeable of sitting with her children while she goes on her paper routes. Now this requires me being alone with them, what if I were to need to call an ambulance for myself what would I do with her kids? My bed is now in the living room so she also insists that that is where I am to sit while she sits next to Kerry on the sofa. In addition to all of this, she also has some issues with my Zack. Grace's youngest Blossom is a 5 year old little girl. Grace is constantly telling this child to try to beat Zack up, telling her to hit or kick him constantly. Yet when Zack tries to defend himself Grace then threatens to get Zack herself. Plus if Zack don't fight back then for weeks we listen to how Blossom beat up our 11 year old. Like I said I think this woman means well, but God give me strenght cause she has struck my very last nerve!

Okay I feel better haveing told someone how I feel thanks for being here to listen. Now my fingers hurt and I'm getting tired. Maybe my e-mail will work now, you think? MICKEY

Hello my friends, All is going fairl well here in rainy flooded Iowa. We had our HUD inspection yesterday, she will be back at the end of the month... I figure if we pray for a miracle we just might pass. Oh well, not going to stress about it now, wont do no good anyway! Zachary has been home from school sick the last two days, poor kid when he gets sick, he REALLY gets it bad. No 24 hour bug for him! You know, growing up I really think I had it good. Granted I was adopted and back then I thought that was a death sentence of it's own. But looking back things were good. My parents tought me so much that I never realized before. I think I need to make it more of a hibit to tell them just how great they are. It's amazing, now that I do have to use the wheelchair occasionally, the things I notice. The attitudes people have are just totally unreal. Some are overly sympathetic, others are down right rude. Does being sick change a person that much? I'm so tired of people, even those close to me, telling me that they dont know what to say to me. I am me the same MICKEY that I was 2 years ago sheesh! Makes me wonder the typ of upbringing that some of these people had.

I'm gonna go for now more to come real soon. MICKEY

Hello my friends, I'm not sure where to begin or if I should be writing in here at all tonight. I think I just need to talk and I'm not sure who to talk to. What do you do when you've been hurt by someone very important to you? How are you suppose to react when those close to you refuse to talk to you? Okay so I dont make a lot of since tonight I'm allowed. I just so desperately need to talk. I NEED to know that SOMEONE cares. OK no I dont want a pity party. I do not feel sorry for myself and I'm not getting deeply depressed because of the whole PH thing. So much I want to say but to write about it would hurt so much. I want to go back in time. Yes preferably to my youth and live my life over again. More specifically to just prior to my diagnosis. Things were really going well. Kerry and I were friends. I had someone special in my life who would talk to me and listen to me. I never doubted this persons feelings for me, or his faithfullness to me. Unfortuniatly I didn't force myself to feel as deeply for him as he did for me. But like I said Kerry and I were friends, real friends. We didn't have to hide anything from each other, or try to be things we really weren't. I know that I owe Kerry a lot, but if he stopped loving me why won't he just set us both free??? Sorry, like I said I should probably keep my big mouth shut. Goodnight MICKEY

Hello again,

First of all there is a God! Sher is breathing!!! That is an answere to many many many prayers. I now believe all things are possible. I read her post on the message board and I thought the tears would never stop flowing.

Then this morning God answered another one of my prayers. During the night last night I wrote to Rush heart clinic, Dr V McLaughlin. They had responded by first thing this morning. They said they'd be more than happy to see me. I am schedualed for an appointment on May 25th. Together the nurse and Kerry found a few things that could/should have been differently. We are working with my family doctor to get all the info needed for the trip. Chicago is a ways from here and I'm not sure how we are going to pull off transportation and motel and stuff but we are praying for a marical to happen. I have faith that God would not bring me this far just to let me down again.

So all is well and I have learned that there is always hope. MICKEY

Hello again my friends, Well, another mothers day has come and gone. So many days like today have gone in the past. So many wasted oppertunities. Today was different, partially because I am different. In the past this day was a day of dread for me. A reminder of how my own mother found me so unlovable that she had to toss me aside to strangers, whom I also never felt loved me. This year is different. I am older, wiser, and looking at life in a differnt way. I know (or will humor myseld into believing) that my biological mother does love me. Unfortuniatly people must be taught to love and to be parents. How can I expect her to show something to her children that was never shown to her? So in my heart I must believe she does care. This year has done a lot of good for me. Along with shedding new perspectives on hurtful situations God has given me so many new people to be thankful for. Among these I must share with you is a lady named Dottie. Dottie also has PH. She is both an inspiration, and a friend to me. She has become my "PH" mom. And I love her as any child would love their mother. I cry for her, I pray for her, and mostly I love her. She provides me with the one thing my other mothers can not. SHE UNDERSTANDS! Nothing, against my adoptive mom, but my PH mom goes through what I go through she really knows how I feel that means so much to me. So since I can not talk to her today, THANK YOU GOD FOR DOTTIE. (and someday I hope we meet in person) Now, mothers day is ending.... How did I spend my day?? If someone had told me a year ago that me Kerry and Zack would be spending 8 hours at my parents house and enjoying ourselves I wouldve laughed and called them a liar. But that's what we did. I felt closer to both of my parents than ever before in my life. They adopted me when I was so young, but I always knew I wasn't exactly what they wanted. Dad and I discussed that today as we worked on his computer. He said that although I wasn't what they has originally asked for, God knew what they really wanted and he wouldn't trade me or my sister for anything. It was by far the best time I've had with him since I was 10 years old. My mom opened up to me in a way that she never has before. We talked for what I think was the first time ever. She didn't talk down to me and I didn't dismiss everything that she was saying to me it was awesome!!! Thank you God for giving me all my moms, and for allowing their strenghths and weaknesses to make me the mother that I am. MICKEY

Hi.... I know two enteries in one day is totally unlike me. Forgetfulness, however, is not unlike me at all. I just wanted to share with you what happened yesterday. Noone around here can seem to find the humor in it that I do. Anyway, while cutting open the package of ribs, not paying attention, I apparently sliced the line to my pump. Silly me was just humming along.... I looked in the sink and saw the line laying there. I thought to myself that stupid thing always gets in the way, then when I went to move it and realized it was hooked to me but not the pump I clamped it and screamed for Kerry. Once again, my hero came in and very calmly fixed it all up. Zack panicked a little but I think we handled it VERY well. So then today as soon as we got to my parents house, mom grabbed her scisors and my shirt, like she was going to snip a loose string or something. Ha! what she thought was a string was the line. We stopped her in time but she felt just terrible! Okay maybe it's not funny to you but it is to me... MICKEY

Hello again, This will not be a long entry. We got REALLY bad news today. My state medical will not cover me to got to Chicago, so I will not be going. Iowa City is not doing me any good. Now there's some problem with my kidneys. I'm sick to my stomache all the time. It hurts so bad it feels like there is a fire inside of me. I can barely breathe at all. Just raising my head takes my breath away. My hickman site is incrediably sore but noone will even look at it for me. And as if that's not enough the terrible, disabling headaches are back again. I really thought going to Chicago was my one shot at survival. I need more Flolan, The people in Chicago described that to me already but Iowa City will not increase it yet. I'm ready to give up. I told Kerry that once Zack goes to sleep tonight I want to rip my hickman out. I'd rather kill myself than let some student doctors do it for me. I probably won't do it but God I am so FRUSTERATED! Ok I'll shut up for now thanks for listening. MICKEY

Hello again and I am sooooooo sorry,

The entry I made earlier today was made out of frusteration, pain and depression. I know that I have a great God and great friends and family. Something will work out somehow. Thank you so much for helping me put my head together and reminding me of how desperatly we need each other. Do not get worried if I do not post again for a few days, I am going to work on my atitude before scaring anyone like that again.

Dottie, I will continue to fight this thing for as long as it takes.... I PROMISE!

MICKEY

Hello again, I am back once again. Now come on you didnt think me and my bad attitude would stay away forever did you? Please my big mouth needs somewhere to run to, I'm afraid if I keep running it around this nit house they'll figure out I'm really fruity and throw me out!

Well, we are still fighting with the state to help me get to someone who actually knows something about this disease. We have decided that state approval or night I am just going to go to Chicago. However, now we must reschedual the appointment and blah, blah, blah! I'm just a little sick of being upset about it so we wont waste anymore time discussing it!

Physically I'm doing better than mentally. My breathing is slowly improving. I did say slowly right? The headaches are still here and they get really really really bad. When they get like that I just lay down. I'm sleeping an awful lot lately, this bothers me. I spend so much time sleeping I'm missing out on things that I dont want to miss but what can I do? I've been awfully sick to my stomache too. Kerry keeps fixing me my chicken soup though and that seems to help a little.

Kerry is frusterated with things.... I know what else is new? He is surprizing me though. He is getting on the computer more and more and he's actually learning a thing or two!

Zack is almost out of the 5th grade!!! He got a star student award again this year and is looking forward to going to the middle school next year. Him and I sat down and did his homework together tonight. He really is a bright little boy.

Justin is back to his old self once again. I tell you with that kid for every one step forward he takes ten steps backwards. He is bond and determined to end up back in prison. He has all the answeres and he aint going to listen to anyone. There's nothing more Kerry and I can do. However, if and when he does go back to prison, this 'momma' and going to be there crying for him, writing to him, and making sure he's got money. He has to learn right from wron sometime and he's going to have to do it the hard way, on his own.

So as you see life is more or less the same. We are still fighting this thing every step of the way. 'night MICKEY

Hello all, Not a whole lot of news around here lately. I've decided not to let myself get worked up about the Dr. situation. Kerry seems to have it under control and we are going to see the specialist even without insurance, and you know what? That's okay! I just have to trust that in the end I'm am doing the right thing and it will work out!!!

Zack has two school days left, then I fear we'll be in for a VERY long summer. He is such a good kid most of the time but when he decided to let those little horns show through he does it in a big way. I fear everyday thet he is going to follow the same path as his older brother and trust me that is every mothers worst nightmare. Hopefully with the paper route and us keeping close tabs on his friends we'll make it through the summer.

Justin, on the other hand I fear is beyond our reach. I am partially blamming myself and Kerry now. We both need to learn to say no to that child. Yes, even at 21, and me only being 30 he is still a child! When a 21 year old man who has a job has to come beg peanut butter from "momma" and "pops" he is a child! He has no rent or utilities to pay and no real bills as you and I know them. But, he has his cravings you know for Beer and ciggarettes and whatever else the hoods are doing with their money these days. I pray to God every night that if my death is going to be the only thing to streighten him out than let me die now.

Kerry of course is the same saint he normally is! Okay maybe not a saint but he is still my hero. He is working so hard to get this house ready for the re-inspection on the 31st, and I feel so bad for just laying there watching him. It hurts me that he has to work so hard, I wish there was some way I could help him. I've begged Justin to help even just a little bit, but obviously my pleas fall on deaf ears.

Well, it's late and as usual, I'm exhausted. Goodnight and God Bless each and every one of you. MICKEY

Here I am again, I guess that is a good thing, that I am here I mean. I'm struggling with myself about wether or not I should be writing in here right now. I don't want to sound angry or depressing, but man do I need to let off some steam!

I'm wondering am I being punished for something? I have made more than my share of mistakes, but have I really done anything bad enough to deserve all that is being thrown my way right now? I've never broken any major laws, not even a speeding ticket. As a child, I guess I was a bit of a handful. I stayed out late a few times, twice I stayed out all night, occasionally I'd lie to my parents about where I'd been. But even still, I never drank or did any type of drugs that my friends were doing. I got married at seventeen but even that was with my parents approval. I dressed a little outrageously, but nothing compared to the kids today. Granted, I dropped out of school, but does that warrant all that is comming my way now?

When I was first diagnosed with PPH, I figured ok it's not fair but I'll find a way to cope. I try, you gotta know I try and I fight. With each new pain, and as I feel my life slipping away, I think of my friends and my family and I fight. With each new day we can all see that it's a fight I am quickly loseing, but I fight with a new determination, and a strength I draw from the ones I love. I had almost convinced myself that I could handle anything else that God decided to throw my way.

Last night my oldest came over. He's been promising forever that he'd get his "car" out of our garage. It needs to be gone by Thursday for us to pass our inspection. It has no keys, no windows,no title, the inside is all torn up, the hood isnt on it ect. Well, the car still sits there. Anyway, while he was here he was complaining that he needs a way to get some money to buy new clothes because one of his thug friends stole all the clothes he had. So, I told him if he'd come back today and help get the carpets cleaned I'd help him get some clothes. Needless to say I spent the whole day on my hands and knees doing tha carpet. He finall showed up at 6:30 tonight claiming he had just woke up. I did real good for about an hour I kept my mouth shut. He got out my hair clippers and gave himself a new haircut, then proceded to throw a fit. You know the kind of fit a two year old child would throw when they don't get the toy they want? He was crying, I mean really crying and swearing at us because he didn't like the way he had cut his hair. Now I don't know if it was because of the pain of working so hard today, or the fact that he is 21 and I'm only 30, but I blew up! I just wanted him to stop and think about how petty he is being. I'm not that much older than him and my life is ending, he takes way to much for granted. So that's how the war began. Poor little Justin, no one has ever loved him, no one cares, and he don't care about anyone or anything. I honestly just wanted him to listen to me. He tried to push past me and I pushed him back instead, Kerry saw Justin start to raise his arm to me and Kerry jumped right in. Finally after a lot of yelling and screaming, and Kerry getting his legs tangled in my tubing, Justin stormed out. He left swearing he don't care about no one or nothing and he's just gonna go downtown and get in a fight so he can end up in jail again anyway. You know all the stuff we always have to listen to.

So now, Kerry's upset, I'm upset, and Justin's upset. We are all hurting in our own way. And poor Zack he is so scared and upset he just don't know what to do.

So, I ask again, What did I do that was so terrible that all this is happening to me?

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