My Book

* * * Dealing with Chronic Illness While being a Mom Too

* * * "Do not love what you must endure, but do love the act of enduring these trials." St Augustine (Forward) September 6, 1998. I was diagnosed with Primary Pulmonary Hypertension (PPH). The weeks before diagnosis seemed like any other to me. That was the life I had before diagnosis, before I had even heard those words. For months before, I had chest pains, short of breath, so very very tired, and I was fainting. I couldn't bend down to pick up after my little ones, at the time ages 2 yrs, 4 yrs and 5 yrs. Raising my arms to reach or wash my hair left me dizzy. Brushing it off as out of shape or over weight was an easy way for me to deal with these problems. Fainting left me embarrassed, and I kept it hidden whenever I could. When a person passes out, (syncope) they loose all control of their bodily functions. Many times I would wake up from fainting soaked from loose of bladder control. Shortness of breath left me so weak and tired, climbing stairs would be a chore. Instead of climbing the stairs, I ended up crawling up the stairs just to make it up to the top, and most times that I did make it up to the top of the stairs, I would pass out from the sheer exhaustion. The very first time that someone watched me faint when was when I was playing outdoors with my daughter, sister and mother in law. My daughter, two yrs old, was away hiding, thank goodness, and I sat down. That is all that I recall. When I awoke, the paramedics were over me asking questions, and all I wanted to do was shrink away. My sister later told me that I said I'm tired, put my head down on a step, and they watched as my head and body bounced off a couple of steps. My first appointment to see my Primary Care Physician, he took one look at me and decided I was depressed. He said that is why I was so tired all the time. He said that sometimes people faint, and when I questioned him if I were going to faint again, he said, I just don't know. Each subsequent visit this doctor would increase my dosage of Prozac and send me on my way. One day, I fainted in front of my husband, who was extremely worried. He called the clinic and went with me to see the PCP, fortunately, the PCP I saw before was not there. We were scheduled to see a new doctor, Dr Mark Heard, whom I still see to this day. I explained to Dr Heard about my symptoms and told him what the other doc has said to me. Upon hearing this, he immediately said, this is not in your head this is your heart. My blood pressure was very high, my heart rate was faster than average, and my pulse oxygenation levels were in the 80's, were 100 is normal. (Pulse ox level measures the amount of o2 in your blood. 95-100 is normal. at 88 they prescribe oxygen.) Dr Heard immediately order echocardiograms for me, which were taken that afternoon. The next day, at work, I receive a phone call at my work place from a nurse at the clinic. This is how I remember that phone call.
Nurse, "Mrs Flipse, Dr heard needs to see you right away."
Me, "right away? Is everything ok?"
Nurse, "well, are you standing?"
Me, “yes"
Nurse," then you are ok. But the doctor needs to see you today. It’s about your echo"

I hung up the phone with the nurse and thought, am I standing? Am I standing? What does that mean? About the echo? It’s about my heart. Oh my gosh, it's about my heart. Taking to my employer, I stated that I would need the rest of the day off to see my doctor. That was the last day I went back to work. At the doctor's office, Dr Heard reviewed my echocardiogram with me. He said words I had never heard, nor understood. Pulmonary Arterial Pressures, Cardiac refractions, valve regurgitation. P1's, P2's. What was this? He said right away that the only way he recognized what this was because he had one other patient many years ago that had this same illness. He referred me to a Cardiologist who was at outpatient that day. The cardiologist was able to squeeze me in. There is much of that day that I do not remember, because I blocked out allot of what was said. He said I had a disease in my heart. , and that it was something very rare. He had never seen it and had no idea how to take care of me. He was sending me to Houston to see a specialist he had heard about. My mother in law was with me; she asked how long did they think I had, 2-5 years the cardiologist said. Before he left, the cardiologist took a hold of my hand and told me something, one word that I took a hold of and grasped on for dear life, Prostacyclin. It was a new medication that I had not heard of. I cried the entire way home. What would I do? What would I tell my husband? Would he understand? Would he still love a sick person? 2-5 yrs to live. Oh my God, 2-5 years to live. I had heard before that a child under 4 yrs old would forget most things if it is taken away. I didn't want my babies to forget me. When I got home, I dried my tears. I couldn't let my children see me like this. What would they say? What would I say? We went about our day as if nothing had happened, but those words stuck in my head over and over again, two to five years, Prostacyclin, terminal, heart. I couldn't even remember the name of the disease, but I kept a hold of Prostacyclin.

When the children were asleep in bed, I went to the Internet. Went to a search engine and looked up the word Prostacyclin. Everything was saved and book marked. I had pages upon pages of printed information for me to read later in bed. I delved, and devoted all my free time to researching PPH on the Internet. I found old information that told me I would die even with treatment, but how was I to know that that was old information? I went deeper and deeper into depression, crying every day in the shower so that my girls couldn't see me cry. Finally, I found a page of support, PH Association. Not much support was found there, mostly bickering, so I continued my search, but remained faithful to PHA for many months, until I found PHCentral.

But even with my newfound support group I still felt something was missing for me, something that would let me share my newfound knowledge on PPH and Chronic Illnesses. With the help of my sister Debbie, we built my web site, dedicated to information about pulmonary hypertension. While Debbie stayed with us on her vacation, we spent almost all our free time on the Internet. Even after she left, I continued to research and inform myself. The saying, Knowledge is Power, is so true. I know some say they would rather not know what is going on, but without information as your shield, how can you protect yourself from some that plan to do you harm?

My first impression of my pulmonary hypertension specialist, Dr Frost, was not so good. She was straightforward, didn't mix words, and very incredibly intelligent. She spoke to me of treatment plans which consisted of heart and double lung transplant, Flolan, aka Prostacyclin, and UT15, a new treatment still, at that time, in clinical trials. Ut15 was not, I decided, what I wanted to do; as she explained the way you injected the catheter subcutaneous (SP?) Flolan would be the only other option for me. She directed me to return in a month's time, unless I fainted again. When I got back from the clinic, I took my children to the town's birthday parade. While sitting on the curb watching the cheerleaders and antique cars go by, I started to get dizzy. "I recognize this feeling", I thought. But I still didn't want to leave; I needed to do this with my girls so they would remember this as a fun day. Being a little dizzy turned into Shortness of breath, just sitting there, and my heart began to pound in my ears. We stood up to walk to the car after the parade was over, and even though the crowds were following us, all I could hear was my breathing and my heart pounding. I made sure my daughters were buckled into their car seats, I closed their doors making positive they were securely fastened, sat down on the passenger’s seat, turned on the ignition, then the a/c, and felt my body melt away into the seat. I woke up to people calling to me, asking if I was ok. "Yes," I told them, I was fine. After several drinks of cold refreshing water, I drove my girls and I home, less than a minute away, turned on the TV for them, and fell asleep on the bed.

When I woke up, I had several phone calls on my machine, I returned the call to my mother -in-law, and retold my syncope episode earlier that morning. She made sure that my girls were ok, and made sure I was well on my way back to Houston. When I arrived to Houston, they rushed me into the ER. Terrified, I retold to them what had happened, and they put me into ICU.

Several hours later, Dr Frost and her team came in with my husband to let me know that they needed to do a Right Heart Catheterization (RHC) right away. I read about the RHC and heard how painful it was. How they had to lie in bed for up to 8 hours with a sack of sand on the groin to let the wound close and not continue to bleed. The RHC they wanted to do on me would be through the neck. They began wheeling in the instruments to do the RHC, and I began to cry. That was the last I remember of that day. Without me knowing, my husband told them how fearful of needles I was, and how I would kick and scream if they came close to me with the needles. The injected me with a sedative and I was asleep in a few seconds.

When I did wake up, my shoulder ached so bad, like someone had punched me over and over again on that one spot. I remember looking around trying to see why my shoulder hurt so much, and that's when I found the implanted catheter, a double lumen Hickman catheter, I would later learn. I stayed in the intensive care unit for about a week, going in and out of consciousness. The ICU left a very big impression on me, even though I don't recall very much of what happened there. I do remember people crying, asking for help. I recall one specific old woman asking for help. When I tried to respond to her, I found I couldn't speak. Perhaps I was unconscious, but still able to hear what was going on in my surroundings, I’m not certain about that at all.

When I was finally wheeled into a new room, on the floor, I remember depression setting in. I refused to get out of bed when I could, and I kept the TV and the lights off. I slept as much as I could. That was when I met Jan, a former PPH patient who had been transplanted and was in for rejection. Jan was so bubbly and full of life, and still is. She knew exactly what I was going through, she had done it herself so many years ago. Jan had gone on Flolan, learned how to mix, and had many tricks to teach me, which she did. She visited me daily, sometimes twice a day, while she was going thru her own set of problems. For this and for Jan's friendship, I am eternally grateful.

Learning to mix Flolan is very daunting and nerve racking. Everything had to be perfect, sterile; your life depended on it. The folks who deliver my medication and supplies came by my hospital room daily for 3 days teaching me how to mix, but if it wasn't for Jan's help, I would have been petrified of mixing. The hospital had a videotape of how to mix, how to wash and dry your hands, and wash off your mixing area and finally how to connect the completed medication to the pump. All of this had to be done exactly so. It all seemed so complicated and frightening, until Jan showed me how easy it was. I have been mixing Flolan for almost 4 yrs, since 1998, and it has become so every day, like brushing my teeth and hair.

When I was diagnosed with PPH, my youngest child was 2 yrs old. I was restricted to picking up 10lbs and could hardly breathe. We ate quick meals that could be put into the oven or microwave. Canned fruits and veggies gave my children the nutrition I knew they needed, ready-made salads were quick and easy, frozen, precooked meats were wonderful. But the hardest part was not being able to play outside with them. Not being able to sit on the ground, for fear I wouldn't be able to get back up again. Shortness of breath and chest pains made it difficult for me to chase them around. Even getting out of bed was rough for me on the hardest of days. I looked for support groups in my area, but the closest to me was 300 miles away. So I checked online. There I found such hope and support from other parents. PHCentral gave me inspiration. The email list PHfriends gave me people my own age with children of their own who were struggling not only for their lives but with children, both young and old.

This book is for the younger children. Written in part and with help from my children, now ages 6 yrs, 8 yrs and 9 yrs. It is my hope you find hope and inspiration from your family and friends. I also hope that this book helps you and your children deal with your chronic illness.

***

We normally associate the stages of grief with dealing with a person that has passed away. But for us, with chronic illnesses, we mourn our former life. There are things that we cannot do when we are sick. A person with chronic back pain needs to learn how to sit again, how to bend or reach again. A person with lung disease learns to breathe again. We mourn our old life and what we could do. We also mourn what we always wanted to do, and now will be almost impossible to do.

*** (1) My mommie is sick. Now what? We can't play together. But we can cuddle. We still read books together, but can't play tag or ring around the rosies. We pray every night or whenever I feel like we need to. Mommie being sick has made me grow up. I have to do allot of things mommie used to do for me. Make my bed and clean my room. Even make my breakfast. I like doing things for myself, and wish I could do more. What more can I do?

When my mommie gets real sick, she sometimes lies on the couch or bed. I like to bring her a washcloth to cover her eyes. Sometimes wet if she has a headache. I like to rub (massage) her back if she lets me. But I have to be real careful not to hurt her.

Today mommie had to go to the hospital. I don't know for how long. I will be staying with my grandma. It is hard to be away from mommie for so long, but I have her shirt she likes to wear and that keeps me close to mommie. Grandma said we could write notes and draw pictures that we can mail to her. That way, mommie can decorate the hospital room. We can visit mommie on the weekend when daddy can take me to see mommie.

The hospital room is real scary. There are lots of machines making funny noises. Mommie looks sick, but she was able to give me a big smile and even bigger hug. I miss my mommie but it's good to see her.

The nurses came in to take mommie's temperature. They put something on mommie's arm that blows up like a balloon. It looked funny all "blowed" up like that. The nurses gave me a lollipop before she left. After that someone else brought mommie her lunch. We shared it. It was ok. I miss my mommie's cooking. Mommie says when she feels better she will make my favorite foods.

(My Auntie called while I was in the room with mommie. she says she will come over and help out as soon as she can. Auntie is a lot of fun to play with, but she lives far away. Auntie has to take an airplane to come and visit. )

When we are diagnosed with a terminal or incurable chronic illness, it affects our entire lives, and those around us. Spouses, parents and our children are all affected. Even if we do not tell our children how ill we are, they will see our faces. They will hear our whispers. And of course, they will watch us taking pill after pill, sometimes infusing ourselves with medications. Having an incurable illness, and many chronic illnesses, I see my children's reaction when I go to the hospital, or am having a 'bad' day.

My husband says he deals with it, but on the inside, he is just as worried and afraid as I am. My children act out in many ways. At first it was with tears. Later with shouts and acts of meanness towards each other. The sicker I got the worse they became. We began taking our children to see a counselor. So far, we have been seeing her for 3 years. During this time, we found out that our second child has Attention Deficit Disorder. When I took her to the doctor, the doctor said it looks more like depression to him. Like my daughter, I also have depression, which is to be expected with someone with a chronic illness. We have to take care of ourselves as well as take care of our children.

Adding a special time-one where you have been able to rest before hand and set it aside just for the kids and a time (1 hour maybe) of anything special they want to do.

Also a special place to frank question and answers-a place where they know you understand this is serious time to pay strict attention to what they have to say or ask?

Your kids are much younger than mine; I can let them do without constant supervision.

I also like "what if" games, kind of pulls what they really think or feel without saying-how do you feel about Mommy being sick............... (From Cindy)

How about keeping a list of things you do everyday or every week posted on a message board or by a calendar with dates marked for doctor appointments.. etc ...So if you are hospitalize on short notice whoever is looking out for the family will know what needs to be done and when. (FROM BECKY)

Maybe play by exchanging roles. You are she and she is you. Or the dolls are she and you. I don't know. Maybe just having her sit on your lap and rocking her will open her up? See if she will maybe open up to her Sunday school teacher or someone she can relate to at church.

***

Stages of Grief (3) Someone who is diagnosed with a chronic illness that does not have children can mourn the loss of their former loss, without worrying how others see it. Someone with children is always worrying; I don't want my kids to see me cry. If they see me worry, they will be afraid of what is going on. They may think they made me sick. Or whatever. Having children as well as a chronic incurable illness brings an entire new set or worries for the patient. Is this familiar? Can it be passed on to my children? What if I got pregnant again while I am sick?

Mourning the loss of your former life is something most people who have dramatic life altering affects from the illness have to deal with. You mourn your life just as someone would mourn someone that has passed away. You go thru the same stages of grief.

Five Stages Of Grief

· 1. Denial and Isolation.

· 2. Anger.

· 3. Bargaining.

· 4. Depression.

· 5. Acceptance.

We'll talk little bit about each as it applies to the patient of a chronic illness.

· 1. Denial, incredulous. It couldn't be me! Why would this happen? How could this happen? What did I do wrong? Why would God let this happen? All questions that we ask ourselves. I know I did it. As soon as I heard the words Primary pulmonary hypertension, I was trying to deny it away. I did nothing wrong in my life. Never smoked, never drank, never did drugs. How could I have this horrible disease? The more in denial I became, the more I isolated myself. My children saw me less and less. My friends and family saw me less and less. I would make dinner or a meal, and rush off to bed to sleep. (Also part of depression) I asked others to go to the market for me, so I would not have to face the world, or have the world see me, for that matter. Little by little, as I researched about my illness, denial and isolation gave way to number anger.

· 2.I began to become angered. "How dare you, Lord, give me this illness? Don't you know I have my family to take care of? I have too much to do with my life to be sick!" Everyone I came across during daily life found my cranky, crabby, and very very angry. The worst part of the anger aspect was being angry with my children. Why should they get to run around and play laugh when I am in such agony? Why can my husband go to work each day, leaving me hear to raise these kids when I can't even raise myself out of bed to make them a meal? Soon, the anger began to melt away, and I was able to view things a little differently. Anger gave way to bargaining.

· 3.I promise, Lord, if you take this away, I will be good for now on. I will do all that I need to. Go to church every Sunday. Be a better person and mother. Bargaining is a very common stage that allot of people stay in for a short time. Anger and denial is the most common stage for people to stay in.

· 4.Depression is very common stage, however, for someone who has a chronic illness is not just a stage, it is expected. IF the depression lingers for more than a few weeks, ask your doctor for anti depressants, if they do not affect the other meds you are using. It may take a while to work, and if it doesn't work, go to the next and the next until you find the one that will work. There is no shame in taking anti depressants. When they work, you can find joy in your life again. The smallest things and simplest things in life can bring you so much joy!

· 5.Acceptance. It is very important to reach acceptance when you are mourning your former life. When you are able to accept your illness as part of your life, instead of running your life, you will be able to see the littlest things in your life as so beautiful and important. The sunset, a smile, the flowers that bloom. All these and more will be so wonderful! You will view each rainy day, each hot and humid day, each foggy day, as a gift from GOD. And instead of dreading birthdays, you will cherish them, for you know that with it, it brings the promise of another year filled with the blessings you will be receiving from your children, husband, friends and total strangers. Words of comfort will bring extra joy. And, when a small child stares at the oxygen tubing coming out of your nose, you will happily explain what it is and what it is for, instead of crying for days that you are ugly and that stupid thing is terrible.

Most people go thru these stages of grief. However, the order they go through the stages of grief or usually not in that identical order. It just so happens, that is how I went through it. Also, the amount of time one person is in any one of the stages may vary greatly from the next person. Someone may begin in Denial and go straight to acceptance. What matters is that they reach Acceptance. Seeing a counselor may be necessary before reaching acceptance, and I recommend anyone with a chronic illness seeks the guidance of a counselor, for themselves and their children. Revisiting the stages of grief occur more often when one begins to deteriorate, or has some kind of shock in their life, such as further illnesses, like it was in my case. When Acceptance is reached, it is ok to sometimes visit Denial or Anger on occasions. Just don't let it rule you or take over your life. All you have to do is go back to that happy place in your life when you were in acceptance. Reach back into your very being and accept your illness as your own.

There was a story that helped me get to accept my illness. A story that tells of our Lord going into a huge room. The room was filled with crosses of different sizes and heaviness. Our Lord picks up several crosses, one at a time, measuring them against us. Until He finally chooses one that fits us. Our Lord sands the cross down a little, taking away a little bit of our burden, and adds it to His own cross. He then takes His own cross, sands it down a little, and adds it to our cross, so that while we are bearing our burden, we also bear His. And with all the love of our blessed Lord, He hands us our cross, and says, Take up your cross daily. For I love you.

Ways of accepting your illness as your own.

You may have heard others talking about finding the happy place in their life. This works in dealing with stress as well as reaching Acceptance of your illness. We will talk about this for a little bit in this section.

In order to find the happy place in your life, you will need a quiet place with no one to interrupt you. Find a way to have peace, maybe quiet music playing in the background. It may help if you lie down. (Meditation) Close your eyes. Imagine the most beautiful image you can think of. This image can be from your imagination or from real life. The ocean waters perhaps, the crisp clean air of the mountains. Put as much description into your happy place as you can. Memorize every bit you can, the rocks, the clouds, the sand, perhaps.

Keep your happy place your own place. You can allow people into your happy place, if you choose, but I think it is best to keep people out of it. The reason for this is if you put your husband into your happy place, and if you divorce, then your happy place will no longer be happy if he is still there.

If you aren't one for imagery, using pictures or postcards can be of help for the details. Your favorite vacation place, the house where you grew up, the lake where you enjoyed picnicing, is all wonderful happy places. Keep all the love and joy you felt, when you were at these places, in mind.

After you have memorized these beautiful places to the last detail that you can, close your eyes. Keep your breathing regulated, if you can. Imagine all the stress leaving your body with each breath you take. First your toes, then your legs. With each exhale, feel the stress now leaving your torso, now your shoulders. Can you feel your heart beating? That is the stillness, the quiet. Exhaling again you can feel the stress leaving your arms and hands and fingertips. If it helps, you can shake your arms and legs to further enhance the feelings. Can you feel the tingling in your body? Continue to inhale and exhale, brings finally the stress up and out of your head. Now that you are totally stress free, take yourself to your happy place. Imagine the crispness of the air. Bask in the warmth sunlight.

You can stay there for as long as you want, or can. But always remember to bring yourself slowly back out of your happy place. Once again, shaking your arms and legs to further enhance the sensation of coming back into the real world. You can do this at any time or place, as long as you are safe. This sure has helped me when I am way passed the stressed level. But please, do not let yourself get way passed that level, like I tend to do.

Writing Writing a daily journal is very therapeutic. Writing down your emotions is very cathartic, it will help cleanse or purge emotional tension. I know as a mom of 3 children, I find it very hard to let out my feelings in front of them. I have cried in front of them, if I have hurt myself, if someone close to me has passed away, as many of my dearest friends have, who have shared this disease with me. I do have a lot of emotional tension inside. While writing this book, I have gone thru several mini breakdowns; I have, of course, brought myself out of them. If you are reading this book, I have survived all of these mini breakdowns. Soul searching, like one with a chronic incurable illness must do, is not an easy task. Try very hard not to go back thru your past errors. If you must, correct your mistakes, your faults. We all have them. We will all make more mistakes. Writing down your daily interactions, your emotions can help you immensely. I believe it was Oprah, the television personality, who told us to write down all the good you did and saw each day. That was a great way to see how much good we have in our lives.

It has been recommended to me that I write a page a day to each child so that they may have something of me for themselves. I haven't been able to that as of yet. It is too heart wrenching, but I know that when I am emotionally stable I will be able to do so. Another suggestion that I heard on television is video tapping yourself, addressing every mild stone on video so that your child can have you there with them during these mild stones.

Prayers There have been many studies that show how prayer helps those who are sick. The conclusions were, for many of these studies, that whether or not it was the prayers that helped, knowing that they were praying for helped ease the burden of the illness.

I have had my share of miracles. And I owe it all to my Lord. Prayers were said for us when we were on our way to the hospital one March evening, and at the precise moment, we were hit head on by a drunken driver. I had extensive internal injuries, collapsed lung, punctured spleen, fractured ribs, and the mere fact that my catheter was not turn in two by the flying glass, to me was a huge miracle. I was in the hospital for two weeks. The doctor's said it had to have been a miracle. All my injuries healed themselves. My spleen, they were afraid, would have to be removed, but later when examined by specialists, found that the spleen was healed. My lung also had healed itself.

When I went in for a Full Bone Scan, a normal test when being listed for transplant, the technician asked if I had any broken bones. "Yes", I said. I had several ribs fractured. The technician laughed at me and said, "If you had your ribs fractured, you would still be in great pain." I requested that he take a second look, this time he magnified the screen, and said,” Wow. There they are."

My husband was also injured, and out of work for 6 months, but is now walking normally and without a limp.

Prayers are very very powerful, even to the unbeliever. Prayer is a way for spiritual healing as well. St Augustine of Hippo is quoted as saying,

"Do not love what you must endure, but do love the act of enduring these trials."

Several verses in the Bible deal with praying over the sick person. Jesus healed many throughout His time here on earth.
In the New American Bible, John Chapter 14 says, "Do not let your hearts be troubled. You have faith in God."

Psalm 91 v3 tells us that God will rescue you from the fowler's snare, from the destroying plague.. God's faithfulness is a protecting shield.

Psalm 139 v5 tells us,” Behind and before you encircle me and rest your hand upon me."

Psalm 20, the Psalm of David, tells us, v8 "Some rely on chariots, others on horses, but we on the name of the Lord our God."

Mathew 12 vs. 28-30 Jesus says,” Come to me all who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for yourselves. For my yoke is easy, and my burden light." ***

Keeping your Faith This is the day that the Lord hath made! Let us rejoice and be glad in it!

Let Christ carry your cross with you
When you are diagnosed, and most of the time there after, you will hear over and over again to "keep your faith". It is so important to keep faith in whatever your core belief is. For me, it is Catholicism, which is the first form of Christianity. It is very important for me and my children to pray all the time, and keep the lines of communication open about prayer. We pray at the spur of the moment, about anything. At the time of our nightly prayers, they always ask God to "protect mommie and keep her safe". They also pray for all the sick people in the world, they know there are many. It helps them to pray. They have the sense of doing something to help. They know that God hears their prayers, and in time, God will answer their prayers.

But keeping the faith goes beyond your belief system. Keeping your faith includes the knowledge that you will get better, there will be better meds out, in time that can bring your quality of life up as well as time here on this Earth. I have the perfect poem that I found on the Internet; I have it on the main page of my Website. It is copied here, for it gives me faith and hope. The author is unknown at the time I am writing this.

This means so much to me. When I feel down, I read it. I keep a copy of it on my refrigerator door, next to the pictures from my children. It shows me a different meaning of hope that I didn't know before I was diagnosed. There are many many passages in the Bible that really shouts out to me, that never did, until I was diagnosed. I also have other favorite poems that help lift up sagging spirits.

We must also have faith and hope that tomorrow will bring a brighter day, even if you don't feel better. I have had many days where I am barely able to get out of bed and my children bring me books, for me to read to them. They hop into bed and I read to them. Or they read to me.

*** If you are too sick to play with your kids during the day, and are all alone, what can you do? There are many things to do with your kids in bed, sitting on the coach, or even outside. We always keep on hand coloring books and crayons. My older girls enjoy chalk colorings, I purchase inexpensive sidewalk chalk, colored pencils and markers. Stamps are also fun for the kids. Certain manufacturers carry stampers in markers that make it allot of easier for little fingers.

We enjoy telling stories under the covers, pretending to be camping out. Kids love to play make over, let them carefully brush your hair, maybe even putting in their little barrettes.

If you can, there are many children's online sites. I always sit with my kids while they play online, just in case. They love playing at their favorite doll sites, Polly Pocket, Barbie, etc.

Renting a movie and watching it together is good quality time for you and the kids. You can watch a Disney movie or something with a little more umph to it, later discussing what your child might have done later. Quick finger foods, which are microwave able, or even straight from the fridge foods, such as cubed cheese, baby carrots, with crackers are good to snack on. Kids love to watch musicals. They like to act out the dancing or songs, I always enjoy video taping them doing their little show.

At the dinner table, making easy crafts, playing with play doe, making watercolors. My colors love it when I print out a picture off the Internet for them to color. This has been our custom (?) for Christmas time. Saves on cards and everyone loves to see how they have advanced in their coloring skills. Adding sparkles makes it even more special. This year, we are including picture frames made from Popsicle sticks and craft foam cut outs. They will choose their favorite pictures to include in the frame.

Teaching your children to cook, although difficult at first, makes mealtime easier for everyone. The little ones really enjoy spending this time together with their mommie's and the mommie's get the help they need in the kitchen. Clean up is very important too, and when the little one's learn to do it well enough, the mommie can sit and relax while the kids clean up. If you are up to doing this, you can help adding to the quality time of cooking, by joining the children while they clear the table and wash the dishes.

Outside, pull up a chair and watch them riding their bikes, playing tag, coloring the sidewalk with chalk, or "painting the house" with water and paintbrushes.

If you have to walk, but cannot walk far, walking back and forth with the little ones tagging along is good exercise. (Talk to your doctor before starting this) I also try to go walking in the neighborhood drug store, super market or discount store, when it is too hot or humid to be outside.

If you have more than one child, like I do, you will probably need to set up a special time for each child, so that you can have one on one. Setting up a special place to talk or cuddle is nice for quiet time. Reading together tightens the bonds between mother and child. Going for a car ride, treating yourselves to an ice cream is nice. Spending time together to work on homework. Sitting out on the front or back porch to watch the stars or clouds. One of the things I really would love to do with my girls is go to the beach, build a little fire, and roast hot dogs and later marsh mellows. There are many outside things to do with your children, while you sit and watch, or join in.

If you have a child who is resistant to chat with you about your illness, giving them leads, such as, are there any questions you might have that you want to ask me? What about my illness scares you? Can we talk about this a little bit before we go for ice cream? Is a favorite for my girls because they know after a little pain, they have the release of the ice cream to cheer them up again.

*** (2)

Every day survival tips for mommies with a chronic illness · 1. Rest whenever possible.

· 2. Don't over due. Even if the children are begging you to.

· 3. Hire a baby sitter or maid to help around the house. Grandmas are even better!

· 4. Trade off with other neighborhood moms, driving kids to school, play -dates, etc.

· 5. Easy is the word for meals. Pre cooked ready to eat and canned items are all wonderful!

· 6. When too tired or stressed order in for meals. No Clean up and you can enjoy your time with your family.

· 7.If you can go out, all you can eats are family friendly places, and everyone gets what they want. They even have meals for those restricted diets, sugar free, low sodium, caffeine free. Call ahead for info to your favorite restaurant.

· 8. Early mornings are always hard for me, if you call ahead of time and pre arrange the school can pick up your kids. Talk to the principal and make sure it's ok. If not, talk to a parent of one of your child’s classmates. There are many wonderful people out there who really want to help.

· 9.Ask your church or place of worship if they can have others come and help you with cooking or light clean up. This works wonderfully, especially when you are in the hospital and dad is alone with the kids.

· 10.Be prepared for small emergencies as well as big ones.

· 11. Try to stay away from stress as much as possible. Stress can cause palpitations, difficulty in breathing, and other problems>(24 pages) * * * Dealing with Chronic Illness While being a Mom Too * * * "Do not love what you must endure, but do love the act of enduring these trials." St Augustine (Forward) ***New***September 6, 1998. I was diagnosed with Primary Pulmonary Hypertension (PPH). The weeks before diagnosis seemed like any other to me. That was the life I had before diagnosis, before I had even heard those words. For months before, I had chest pains, short of breath, so very very tired, and I was fainting. I couldn't bend down to pick up after my little ones, at the time ages 2 yrs, 4 yrs and 5 yrs. Raising my arms to reach or wash my hair left me dizzy. Brushing it off as out of shape or over weight was an easy way for me to deal with these problems. Fainting left me embarrassed, and I kept it hidden whenever I could. When a person passes out, (syncope) they loose all control of their bodily functions. Many times I would wake up from fainting soaked from loose of bladder control. Shortness of breath left me so weak and tired, climbing stairs would be a chore. Instead of climbing the stairs, I ended up crawling up the stairs just to make it up to the top, and most times that I did make it up to the top of the stairs, I would pass out from the sheer exhaustion. The very first time that someone watched me faint when was when I was playing outdoors with my daughter, sister and mother in law. My daughter, two yrs old, was away hiding, thank goodness, and I sat down. That is all that I recall. When I awoke, the paramedics were over me asking questions, and all I wanted to do was shrink away. My sister later told me that I said I'm tired, put my head down on a step, and they watched as my head and body bounced off a couple of steps. My first appointment to see my Primary Care Physician, he took one look at me and decided I was depressed. He said that is why I was so tired all the time. He said that sometimes people faint, and when I questioned him if I were going to faint again, he said, I just don't know. Each subsequent visit this doctor would increase my dosage of Prozac and send me on my way. One day, I fainted in front of my husband, who was extremely worried. He called the clinic and went with me to see the PCP, fortunately, the PCP I saw before was not there. We were scheduled to see a new doctor, Dr Mark Heard, whom I still see to this day. I explained to Dr Heard about my symptoms and told him what the other doc has said to me. Upon hearing this, he immediately said, this is not in your head this is your heart. My blood pressure was very high, my heart rate was faster than average, and my pulse oxygenation levels were in the 80's, were 100 is normal. (Pulse ox level measures the amount of o2 in your blood. 95-100 is normal. at 88 they prescribe oxygen.) Dr Heard immediately order echocardiograms for me, which were taken that afternoon. The next day, at work, I receive a phone call at my work place from a nurse at the clinic. This is how I remember that phone call. Nurse, "Mrs Flipse, Dr heard needs to see you right away." Me, "right away? Is everything ok?" Nurse, "well, are you standing?" Me, “yes" Nurse," then you are ok. But the doctor needs to see you today. It’s about your echo" I hung up the phone with the nurse and thought, am I standing? Am I standing? What does that mean? About the echo? It’s about my heart. Oh my gosh, it's about my heart. Taking to my employer, I stated that I would need the rest of the day off to see my doctor. That was the last day I went back to work. At the doctor's office, Dr Heard reviewed my echocardiogram with me. He said words I had never heard, nor understood. Pulmonary Arterial Pressures, Cardiac refractions, valve regurgitation. P1's, P2's. What was this? He said right away that the only way he recognized what this was because he had one other patient many years ago that had this same illness. He referred me to a Cardiologist who was at outpatient that day. The cardiologist was able to squeeze me in. There is much of that day that I do not remember, because I blocked out allot of what was said. He said I had a disease in my heart. , and that it was something very rare. He had never seen it and had no idea how to take care of me. He was sending me to Houston to see a specialist he had heard about. My mother in law was with me; she asked how long did they think I had, 2-5 years the cardiologist said. Before he left, the cardiologist took a hold of my hand and told me something, one word that I took a hold of and grasped on for dear life, Prostacyclin. It was a new medication that I had not heard of. I cried the entire way home. What would I do? What would I tell my husband? Would he understand? Would he still love a sick person? 2-5 yrs to live. Oh my God, 2-5 years to live. I had heard before that a child under 4 yrs old would forget most things if it is taken away. I didn't want my babies to forget me. When I got home, I dried my tears. I couldn't let my children see me like this. What would they say? What would I say? We went about our day as if nothing had happened, but those words stuck in my head over and over again, two to five years, Prostacyclin, terminal, heart. I couldn't even remember the name of the disease, but I kept a hold of Prostacyclin. When the children were asleep in bed, I went to the Internet. Went to a search engine and looked up the word Prostacyclin. Everything was saved and book marked. I had pages upon pages of printed information for me to read later in bed. I delved, and devoted all my free time to researching PPH on the Internet. I found old information that told me I would die even with treatment, but how was I to know that that was old information? I went deeper and deeper into depression, crying every day in the shower so that my girls couldn't see me cry. Finally, I found a page of support, PH Association. Not much support was found there, mostly bickering, so I continued my search, but remained faithful to PHA for many months, until I found PHCentral. But even with my newfound support group I still felt something was missing for me, something that would let me share my newfound knowledge on PPH and Chronic Illnesses. With the help of my sister Debbie, we built my web site, dedicated to information about pulmonary hypertension. While Debbie stayed with us on her vacation, we spent almost all our free time on the Internet. Even after she left, I continued to research and inform myself. The saying, Knowledge is Power, is so true. I know some say they would rather not know what is going on, but without information as your shield, how can you protect yourself from some that plan to do you harm? My first impression of my pulmonary hypertension specialist, Dr Frost, was not so good. She was straightforward, didn't mix words, and very incredibly intelligent. She spoke to me of treatment plans which consisted of heart and double lung transplant, Flolan, aka Prostacyclin, and UT15, a new treatment still, at that time, in clinical trials. Ut15 was not, I decided, what I wanted to do; as she explained the way you injected the catheter subcutaneous. Flolan would be the only other option for me. She directed me to return in a month's time, unless I fainted again. When I got back from the clinic, I took my children to the town's birthday parade. While sitting on the curb watching the cheerleaders and antique cars go by, I started to get dizzy. "I recognize this feeling", I thought. But I still didn't want to leave; I needed to do this with my girls so they would remember this as a fun day. Being a little dizzy turned into Shortness of breath, just sitting there, and my heart began to pound in my ears. We stood up to walk to the car after the parade was over, and even though the crowds were following us, all I could hear was my breathing and my heart pounding. I made sure my daughters were buckled into their car seats, I closed their doors making positive they were securely fastened, sat down on the passenger’s seat, turned on the ignition, then the a/c, and felt my body melt away into the seat. I woke up to people calling to me, asking if I was ok. "Yes," I told them, I was fine. After several drinks of cold refreshing water, I drove my girls and I home, less than a minute away, turned on the TV for them, and fell asleep on the bed. When I woke up, I had several phone calls on my machine, I returned the call to my mother -in-law, and retold my syncope episode earlier that morning. She made sure that my girls were ok, and made sure I was well on my way back to Houston. When I arrived to Houston, they rushed me into the ER. Terrified, I retold to them what had happened, and they put me into ICU. Several hours later, Dr Frost and her team came in with my husband to let me know that they needed to do a Right Heart Catheterization (RHC) right away. I read about the RHC and heard how painful it was. How they had to lie in bed for up to 8 hours with a sack of sand on the groin to let the wound close and not continue to bleed. The RHC they wanted to do on me would be through the neck. They began wheeling in the instruments to do the RHC, and I began to cry. That was the last I remember of that day. Without me knowing, my husband told them how fearful of needles I was, and how I would kick and scream if they came close to me with the needles. The injected me with a sedative and I was asleep in a few seconds. When I did wake up, my shoulder ached so bad, like someone had punched me over and over again on that one spot. I remember looking around trying to see why my shoulder hurt so much, and that's when I found the implanted catheter, a double lumen Hickman catheter, I would later learn. I stayed in the intensive care unit for about a week, going in and out of consciousness. The ICU left a very big impression on me, even though I don't recall very much of what happened there. I do remember people crying, asking for help. I recall one specific old woman asking for help. When I tried to respond to her, I found I couldn't speak. Perhaps I was unconscious, but still able to hear what was going on in my surroundings, I’m not certain about that at all. When I was finally wheeled into a new room, on the floor, I remember depression setting in. I refused to get out of bed when I could, and I kept the TV and the lights off. I slept as much as I could. That was when I met Jan, a former PPH patient who had been transplanted and was in for rejection. Jan was so bubbly and full of life, and still is. She knew exactly what I was going through, she had done it herself so many years ago. Jan had gone on Flolan, learned how to mix, and had many tricks to teach me, which she did. She visited me daily, sometimes twice a day, while she was going thru her own set of problems. For this and for Jan's friendship, I am eternally grateful. Learning to mix Flolan is very daunting and nerve racking. Everything had to be perfect, sterile; your life depended on it. The folks who deliver my medication and supplies came by my hospital room daily for 3 days teaching me how to mix, but if it wasn't for Jan's help, I would have been petrified of mixing. The hospital had a videotape of how to mix, how to wash and dry your hands, and wash off your mixing area and finally how to connect the completed medication to the pump. All of this had to be done exactly so. It all seemed so complicated and frightening, until Jan showed me how easy it was. I have been mixing Flolan for almost 4 yrs, since 1998, and it has become so every day, like brushing my teeth and hair. ***End new*** When I was diagnosed with PPH, my youngest child was 2 yrs old. I was restricted to picking up 10lbs and could hardly breathe. We ate quick meals that could be put into the oven or microwave. Canned fruits and veggies gave my children the nutrition I knew they needed, ready-made salads were quick and easy, frozen, precooked meats were wonderful. But the hardest part was not being able to play outside with them. Not being able to sit on the ground, for fear I wouldn't be able to get back up again. Shortness of breath and chest pains made it difficult for me to chase them around. Even getting out of bed was rough for me on the hardest of days. I looked for support groups in my area, but the closest to me was 300 miles away. So I checked online. There I found such hope and support from other parents. PHCentral gave me inspiration. The email list PHfriends gave me people my own age with children of their own who were struggling not only for their lives but with children, both young and old. This book is for the younger children. Written in part and with help from my children, now ages 6 yrs, 8 yrs and 9 yrs. It is my hope you find hope and inspiration from your family and friends. I also hope that this book helps you and your children deal with your chronic illness. *** We normally associate the stages of grief with dealing with a person that has passed away. But for us, with chronic illnesses, we mourn our former life. There are things that we cannot do when we are sick. A person with chronic back pain needs to learn how to sit again, how to bend or reach again. A person with lung disease learns to breathe again. We mourn our old life and what we could do. We also mourn what we always wanted to do, and now will be almost impossible to do. *** (1) My mommie is sick. Now what? We can't play together. But we can cuddle. We still read books together, but can't play tag or ring around the rosies. We pray every night or whenever I feel like we need to. Mommie being sick has made me grow up. I have to do allot of things mommie used to do for me. Make my bed and clean my room. Even make my breakfast. I like doing things for myself, and wish I could do more. What more can I do? When my mommie gets real sick, she sometimes lies on the couch or bed. I like to bring her a washcloth to cover her eyes. Sometimes wet if she has a headache. I like to rub (massage) her back if she lets me. But I have to be real careful not to hurt her. Today mommie had to go to the hospital. I don't know for how long. I will be staying with my grandma. It is hard to be away from mommie for so long, but I have her shirt she likes to wear and that keeps me close to mommie. Grandma said we could write notes and draw pictures that we can mail to her. That way, mommie can decorate the hospital room. We can visit mommie on the weekend when daddy can take me to see mommie. The hospital room is real scary. There are lots of machines making funny noises. Mommie looks sick, but she was able to give me a big smile and even bigger hug. I miss my mommie but it's good to see her. The nurses came in to take mommie's temperature. They put something on mommie's arm that blows up like a balloon. It looked funny all "blowed" up like that. The nurses gave me a lollipop before she left. After that someone else brought mommie her lunch. We shared it. It was ok. I miss my mommie's cooking. Mommie says when she feels better she will make my favorite foods. (My Auntie called while I was in the room with mommie. she says she will come over and help out as soon as she can. Auntie is a lot of fun to play with, but she lives far away. Auntie has to take an airplane to come and visit. ) When we are diagnosed with a terminal or incurable chronic illness, it affects our entire lives, and those around us. Spouses, parents and our children are all affected. Even if we do not tell our children how ill we are, they will see our faces. They will hear our whispers. And of course, they will watch us taking pill after pill, sometimes infusing ourselves with medications. Having an incurable illness, and many chronic illnesses, I see my children's reaction when I go to the hospital, or am having a 'bad' day. My husband says he deals with it, but on the inside, he is just as worried and afraid as I am. My children act out in many ways. At first it was with tears. Later with shouts and acts of meanness towards each other. The sicker I got the worse they became. We began taking our children to see a counselor. So far, we have been seeing her for 3 years. During this time, we found out that our second child has Attention Deficit Disorder. When I took her to the doctor, the doctor said it looks more like depression to him. Like my daughter, I also have depression, which is to be expected with someone with a chronic illness. We have to take care of ourselves as well as take care of our children. Adding a special time-one where you have been able to rest before hand and set it aside just for the kids and a time (1 hour maybe) of anything special they want to do Also a special place to frank question and answers-a place where they know you understand this is serious time to pay strict attention to what they have to say or ask? Your kids are much younger than mine; I can let them do without constant supervision. I also like "what if" games, kind of pulls what they really think or feel without saying-how do you feel about Mommy being sick............... (From Cindy) How about keeping a list of things you do everyday or every week posted on a message board or by a calendar with dates marked for doctor appointments.. etc ...So if you are hospitalize on short notice whoever is looking out for the family will know what needs to be done and when. (FROM BECKY) Maybe play by exchanging roles. You are she and she is you. Or the dolls are she and you. I don't know. Maybe just having her sit on your lap and rocking her will open her up? See if she will maybe open up to her Sunday school teacher or someone she can relate to at church. *** Stages of Grief (3) Someone who is diagnosed with a chronic illness that does not have children can mourn the loss of their former loss, without worrying how others see it. Someone with children is always worrying; I don't want my kids to see me cry. If they see me worry, they will be afraid of what is going on. They may think they made me sick. Or whatever. Having children as well as a chronic incurable illness brings an entire new set or worries for the patient. Is this familiar? Can it be passed on to my children? What if I got pregnant again while I am sick? Mourning the loss of your former life is something most people who have dramatic life altering affects from the illness have to deal with. You mourn your life just as someone would mourn someone that has passed away. You go thru the same stages of grief. Five Stages Of Grief · 1. Denial and Isolation. · 2. Anger. · 3. Bargaining. · 4. Depression. · 5. Acceptance. We'll talk little bit about each as it applies to the patient of a chronic illness. · 1. Denial, incredulous. It couldn't be me! Why would this happen? How could this happen? What did I do wrong? Why would God let this happen? All questions that we ask ourselves. I know I did it. As soon as I heard the words Primary pulmonary hypertension, I was trying to deny it away. I did nothing wrong in my life. Never smoked, never drank, never did drugs. How could I have this horrible disease? The more in denial I became, the more I isolated myself. My children saw me less and less. My friends and family saw me less and less. I would make dinner or a meal, and rush off to bed to sleep. (Also part of depression) I asked others to go to the market for me, so I would not have to face the world, or have the world see me, for that matter. Little by little, as I researched about my illness, denial and isolation gave way to number anger. · 2.I began to become angered. "How dare you, Lord, give me this illness? Don't you know I have my family to take care of? I have too much to do with my life to be sick!" Everyone I came across during daily life found my cranky, crabby, and very very angry. The worst part of the anger aspect was being angry with my children. Why should they get to run around and play laugh when I am in such agony? Why can my husband go to work each day, leaving me hear to raise these kids when I can't even raise myself out of bed to make them a meal? Soon, the anger began to melt away, and I was able to view things a little differently. Anger gave way to bargaining. · 3.I promise, Lord, if you take this away, I will be good for now on. I will do all that I need to. Go to church every Sunday. Be a better person and mother. Bargaining is a very common stage that allot of people stay in for a short time. Anger and denial is the most common stage for people to stay in. · 4.Depression is very common stage, however, for someone who has a chronic illness is not just a stage, it is expected. IF the depression lingers for more than a few weeks, ask your doctor for anti depressants, if they do not affect the other meds you are using. It may take a while to work, and if it doesn't work, go to the next and the next until you find the one that will work. There is no shame in taking anti depressants. When they work, you can find joy in your life again. The smallest things and simplest things in life can bring you so much joy! · 5.Acceptance. It is very important to reach acceptance when you are mourning your former life. When you are able to accept your illness as part of your life, instead of running your life, you will be able to see the littlest things in your life as so beautiful and important. The sunset, a smile, the flowers that bloom. All these and more will be so wonderful! You will view each rainy day, each hot and humid day, each foggy day, as a gift from GOD. And instead of dreading birthdays, you will cherish them, for you know that with it, it brings the promise of another year filled with the blessings you will be receiving from your children, husband, friends and total strangers. Words of comfort will bring extra joy. And, when a small child stares at the oxygen tubing coming out of your nose, you will happily explain what it is and what it is for, instead of crying for days that you are ugly and that stupid thing is terrible. Most people go thru these stages of grief. However, the order they go through the stages of grief or usually not in that identical order. It just so happens, that is how I went through it. Also, the amount of time one person is in any one of the stages may vary greatly from the next person. Someone may begin in Denial and go straight to acceptance. What matters is that they reach Acceptance. Seeing a counselor may be necessary before reaching acceptance, and I recommend anyone with a chronic illness seeks the guidance of a counselor, for themselves and their children. Revisiting the stages of grief occur more often when one begins to deteriorate, or has some kind of shock in their life, such as further illnesses, like it was in my case. When Acceptance is reached, it is ok to sometimes visit Denial or Anger on occasions. Just don't let it rule you or take over your life. All you have to do is go back to that happy place in your life when you were in acceptance. Reach back into your very being and accept your illness as your own. There was a story that helped me get to accept my illness. A story that tells of our Lord going into a huge room. The room was filled with crosses of different sizes and heaviness. (?) Our Lord picks up several crosses, one at a time, measuring them against us. Until He finally chooses one that fits us. Our Lord sands the cross down a little, taking away a little bit of our burden, and adds it to His own cross. He then takes His own cross, sands it down a little, and adds it to our cross, so that while we are bearing our burden, we also bear His. And with all the love of our blessed Lord, He hands us our cross, and says, Take up your cross daily. For I love you. Ways of accepting your illness as your own. You may have heard others talking about finding the happy place in their life. This works in dealing with stress as well as reaching Acceptance of your illness. We will talk about this for a little bit in this section. In order to find the happy place in your life, you will need a quiet place with no one to interrupt you. Find a way to have peace, maybe quiet music playing in the background. It may help if you lie down. (Meditation) Close your eyes. Imagine the most beautiful image you can think of. This image can be from your imagination or from real life. The ocean waters perhaps, the crisp clean air of the mountains. Put as much description into your happy place as you can. Memorize every bit you can, the rocks, the clouds, the sand, perhaps. Keep your happy place your own place. You can allow people into your happy place, if you choose, but I think it is best to keep people out of it. The reason for this is if you put your husband into your happy place, and if you divorce, then your happy place will no longer be happy if he is still there. If you aren't one for imagery, using pictures or postcards can be of help for the details. Your favorite vacation place, the house where you grew up, the lake where you enjoyed picnicing, is all wonderful happy places. Keep all the love and joy you felt, when you were at these places, in mind. After you have memorized these beautiful places to the last detail that you can, close your eyes. Keep your breathing regulated, if you can. Imagine all the stress leaving your body with each breath you take. First your toes, then your legs. With each exhale, feel the stress now leaving your torso, now your shoulders. Can you feel your heart beating? That is the stillness, the quiet. Exhaling again you can feel the stress leaving your arms and hands and fingertips. If it helps, you can shake your arms and legs to further enhance the feelings. Can you feel the tingling in your body? Continue to inhale and exhale, brings finally the stress up and out of your head. Now that you are totally stress free, take yourself to your happy place. Imagine the crispness of the air. Bask in the warmth sunlight. You can stay there for as long as you want, or can. But always remember to bring yourself slowly back out of your happy place. Once again, shaking your arms and legs to further enhance the sensation of coming back into the real world. You can do this at any time or place, as long as you are safe. This sure has helped me when I am way passed the stressed level. But please, do not let yourself get way passed that level, like I tend to do. Writing Writing a daily journal is very therapeutic. Writing down your emotions is very cathartic, it will help cleanse or purge emotional tension. I know as a mom of 3 children, I find it very hard to let out my feelings in front of them. I have cried in front of them, if I have hurt myself, if someone close to me has passed away, as many of my dearest friends have, who have shared this disease with me. I do have a lot of emotional tension inside. While writing this book, I have gone thru several mini breakdowns; I have, of course, brought myself out of them. If you are reading this book, I have survived all of these mini breakdowns. Soul searching, like one with a chronic incurable illness must do, is not an easy task. Try very hard not to go back thru your past errors. If you must, correct your mistakes, your faults. We all have them. We will all make more mistakes. Writing down your daily interactions, your emotions can help you immensely. I believe it was Oprah, the television personality, who told us to write down all the good you did and saw each day. That was a great way to see how much good we have in our lives. It has been recommended to me that I write a page a day to each child so that they may have something of me for themselves. I haven't been able to that as of yet. It is too heart wrenching, but I know that when I am emotionally stable I will be able to do so. Another suggestion that I heard on television is video tapping yourself, addressing every mild stone on video so that your child can have you there with them during these mild stones. Prayers There have been many studies that show how prayer helps those who are sick. The conclusions were, for many of these studies, that whether or not it was the prayers that helped, knowing that they were praying for helped ease the burden of the illness. I have had my share of miracles. And I owe it all to my Lord. Prayers were said for us when we were on our way to the hospital one March evening, and at the precise moment, we were hit head on by a drunken driver. I had extensive internal injuries, collapsed lung, punctured spleen, fractured ribs, and the mere fact that my catheter was not turn in two by the flying glass, to me was a huge miracle. I was in the hospital for two weeks. The doctor's said it had to have been a miracle. All my injuries healed themselves. My spleen, they were afraid, would have to be removed, but later when examined by specialists, found that the spleen was healed. My lung also had healed itself. When I went in for a Full Bone Scan, a normal test when being listed for transplant, the technician asked if I had any broken bones. "Yes", I said. I had several ribs fractured. The technician laughed at me and said, "If you had your ribs fractured, you would still be in great pain." I requested that he take a second look, this time he magnified the screen, and said,” Wow. There they are." My husband was also injured, and out of work for 6 months, but is now walking normally and without a limp. Prayers are very very powerful, even to the unbeliever. Prayer is a way for spiritual healing as well. St Augustine of Hippo is quoted as saying, "Do not love what you must endure, but do love the act of enduring these trials." Several verses in the Bible deal with praying over the sick person. Jesus healed many throughout His time here on earth. In the New American Bible, John Chapter 14 says, "Do not let your hearts be troubled. You have faith in God." Psalm 91 v3 tells us that God will rescue you from the fowler's snare, from the destroying plague.. God's faithfulness is a protecting shield. Psalm 139 v5 tells us,” Behind and before you encircle me and rest your hand upon me." Psalm 20, the Psalm of David, tells us, v8 "Some rely on chariots, others on horses, but we on the name of the Lord our God." Mathew 12 vs. 28-30 Jesus says,” Come to me all who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for yourselves. For my yoke is easy, and my burden light." *** Keeping your Faith This is the day that the Lord hath made! Let us rejoice and be glad in it! Let Christ carry your cross with you When you are diagnosed, and most of the time there after, you will hear over and over again to "keep your faith". It is so important to keep faith in whatever your core belief is. For me, it is Catholicism, which is the first form of Christianity. It is very important for me and my children to pray all the time, and keep the lines of communication open about prayer. We pray at the spur of the moment, about anything. At the time of our nightly prayers, they always ask God to "protect mommie and keep her safe". They also pray for all the sick people in the world, they know there are many. It helps them to pray. They have the sense of doing something to help. They know that God hears their prayers, and in time, God will answer their prayers. But keeping the faith goes beyond your belief system. Keeping your faith includes the knowledge that you will get better, there will be better meds out, in time that can bring your quality of life up as well as time here on this Earth. I have the perfect poem that I found on the Internet; I have it on the main page of my Website. It is copied here, for it gives me faith and hope. The author is unknown at the time I am writing this. (((HOPE ..Author unknown It's magic and it's free It's not in a prescription It's not in an IV. It punctuates out laughter, it sparkles in our tears, and it simmers under sorrows, and dissipates our fears. Do you know what Hope is? It's reaching past today, It's dreaming of tomorrow, It's trying a new way, It's pushing past impossible It's pounding on the door, It's questioning the Answers, It's always seeking more, It's rumors of a breakthrough; it's whispers of a cure, a roller coaster ride of remedies, unsure. Do you know what Hope is? It's candy for the soul, it's perfume for the spirit, to share it, makes you Whole. New Hope))) This means so much to me. When I feel down, I read it. I keep a copy of it on my refrigerator door, next to the pictures from my children. It shows me a different meaning of hope that I didn't know before I was diagnosed. There are many many passages in the Bible that really shouts out to me, that never did, until I was diagnosed. I also have other favorite poems that help lift up sagging spirits. (Enclose other poems, stories?) We must also have faith and hope that tomorrow will bring a brighter day, even if you don't feel better. I have had many days where I am barely able to get out of bed and my children bring me books, for me to read to them. They hop into bed and I read to them. Or they read to me. *** If you are too sick to play with your kids during the day, and are all alone, what can you do? There are many things to do with your kids in bed, sitting on the coach, or even outside. We always keep on hand coloring books and crayons. My older girls enjoy chalk colorings, I purchase inexpensive sidewalk chalk, colored pencils and markers. Stamps are also fun for the kids. Certain manufacturers carry stampers in markers that make it allot of easier for little fingers. We enjoy telling stories under the covers, pretending to be camping out. Kids love to play make over, let them carefully brush your hair, maybe even putting in their little barrettes. If you can, there are many children's online sites. I always sit with my kids while they play online, just in case. They love playing at their favorite doll sites, Polly Pocket, Barbie, etc. Renting a movie and watching it together is good quality time for you and the kids. You can watch a Disney movie or something with a little more umph to it, later discussing what your child might have done later. Quick finger foods, which are microwave able, or even straight from the fridge foods, such as cubed cheese, baby carrots, with crackers are good to snack on. Kids love to watch musicals. They like to act out the dancing or songs, I always enjoy video taping them doing their little show. At the dinner table, making easy crafts, playing with play doe, making watercolors. My colors love it when I print out a picture off the Internet for them to color. This has been our custom (?) for Christmas time. Saves on cards and everyone loves to see how they have advanced in their coloring skills. Adding sparkles makes it even more special. This year, we are including picture frames made from Popsicle sticks and craft foam cut outs. They will choose their favorite pictures to include in the frame. Teaching your children to cook, although difficult at first, makes mealtime easier for everyone. The little ones really enjoy spending this time together with their mommie's and the mommie's get the help they need in the kitchen. Clean up is very important too, and when the little one's learn to do it well enough, the mommie can sit and relax while the kids clean up. If you are up to doing this, you can help adding to the quality time of cooking, by joining the children while they clear the table and wash the dishes. Outside, pull up a chair and watch them riding their bikes, playing tag, coloring the sidewalk with chalk, or "painting the house" with water and paintbrushes. If you have to walk, but cannot walk far, walking back and forth with the little ones tagging along is good exercise. (Talk to your doctor before starting this) I also try to go walking in the neighborhood drug store, super market or discount store, when it is too hot or humid to be outside. If you have more than one child, like I do, you will probably need to set up a special time for each child, so that you can have one on one. Setting up a special place to talk or cuddle is nice for quiet time. Reading together tightens the bonds between mother and child. Going for a car ride, treating yourselves to an ice cream is nice. Spending time together to work on homework. Sitting out on the front or back porch to watch the stars or clouds. One of the things I really would love to do with my girls is go to the beach, build a little fire, and roast hot dogs and later marsh mellows. There are many outside things to do with your children, while you sit and watch, or join in. If you have a child who is resistant to chat with you about your illness, giving them leads, such as, are there any questions you might have that you want to ask me? What about my illness scares you? Can we talk about this a little bit before we go for ice cream? Is a favorite for my girls because they know after a little pain, they have the release of the ice cream to cheer them up again. *** (2) Every day survival tips for mommies with a chronic illness · 1. Rest whenever possible. · 2. Don't over due. Even if the children are begging you to. · 3. Hire a baby sitter or maid to help around the house. Grandmas are even better! · 4. Trade off with other neighborhood moms, driving kids to school, play -dates, etc. · 5. Easy is the word for meals. Pre cooked ready to eat and canned items are all wonderful! · 6. When too tired or stressed order in for meals. No Clean up and you can enjoy your time with your family. · 7.If you can go out, all you can eats are family friendly places, and everyone gets what they want. They even have meals for those restricted diets, sugar free, low sodium, caffeine free. Call ahead for info to your favorite restaurant. · 8. Early mornings are always hard for me, if you call ahead of time and pre arrange the school can pick up your kids. Talk to the principal and make sure it's ok. If not, talk to a parent of one of your child’s classmates. There are many wonderful people out there who really want to help. · 9.Ask your church or place of worship if they can have others come and help you with cooking or light clean up. This works wonderfully, especially when you are in the hospital and dad is alone with the kids. · 10.Be prepared for small emergencies as well as big ones. · 11. Try to stay away from stress as much as possible. Stress can cause palpitations, difficulty in breathing, and other problems · 12. For those early mornings when the kids wake up but you really want to sleep in, individually packaged drinks and breakfast items are real good! Keep them in little hands reach and you can rest in without having to get up! For the older kids, microwave able breakfast things are great! **** 12 STEPS TOWARD A MEDICAL "MIRACLE" If you or someone you love is diagnosed with a life-threatening illness, here are the positive steps you can take to insure the best outcome possible. They don't add up to a guarantee, of course. There are no guarantees in medicine. But that's actually good news for people with a serious illness: Maybe you can't be absolutely certain that the best will happen, but you also can't be certain -- no matter what your doctor says -- that the worst will happen. 1. Take Control of Your Illness. You may think you're helpless, but you're not. Take control of your life back with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor's hands. 2. Insist on Options. Forget about second opinions. Look instead for second options. There are no absolutes in medicine, no inevitabilities. There are multiple solutions to every problem. You just have to find them. Don't be afraid of choices; embrace them. 3. Find the Right Doctor. Not all doctors are created equal. When you're seriously ill, it's worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death. 4. Build A Partnership With Your Doctor. A true partnership means there are special responsibilities on both sides. Your part is to be informed about your illness so you can ask questions -- you can never ask too many questions. Your doctor's part is to answer them all, fully and patiently. 5. Recognise That All Medical Decisions Are Trade-offs. Again, there are no right answers. Every decision regarding medical treatments involves weighing costs against benefits. To strike the right balance for you (everybody's balance is different) get all the information you can, then look carefully inside yourself and decide what really matters. 6. Sustain A Claim to Life. A good attitude -- call it optimism or "fighting spirit" or whatever -- isn't enough, no matter how positive. You have to do something. A will to live has to be accompanied by a commitment to living: join a support group, make plans, set goals, "renew your membership in life." 7. Find An Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your doctor as well as your illness. If you haven't got enough fight to go around, enlist an advocate to do the fighting for you. 8. Subdue The Enemy Within. Sooner or later, you'll hear a voice question: "Why Me?" Learn to recognize self-pity and resist it. Questions that never bother you; don't let this one. Not now. Another feeling to resist: guilt. Yes, loved ones are going through hell, but it's not your fault. 9. Build A Support Network. You absolutely cannot get through this alone. You have to depend on people. Family, friends, caregivers, support groups, strangers, it doesn't matter, as long as it's somebody. But don't expect more of people than is reasonable. Don't expect family or friends to change just because you're sick. Don't expect yourself to change. 10. Don't Let The Disease -- Or The Treatment -- Change Who You Are. Don't let the "I'm Still Here!" syndrome get the better of you. Denial and surrender are bad, but survival at any cost is also dangerous, just in a different way. If the disease, or the treatment, changes who you are, then you've lost the battle anyway. 11. Know When To Draw The Line. There's a line beyond which the price of survival is just too high, a line between what is worth fighting for, and what is not. Thresholds of pain vary, as well as thresholds of fear and uncertainty. Doctors often draw this line for patients; draw it for yourself. 12. Never Say Never. Everybody reacts to disease differently. Every body reacts to drugs and treatment differently. Every doctor has had patients who defied all the medical textbooks and prognoses. They've all seen "hopeless" cases turn around. For all the advancements in medical knowledge, the human body remains wondrous strange-- and full of surprises. There is not one word I could add to the importance of this message. I would just add this, "read it often till it is a part of how you feel because how you feel is how you are." **** (3) Acronims those with lung diseases may use on a regular basis, such as those with pulmonary hypertension 1. PPH Primary Pulmonary Hypertension, soon to be changed to PAH Pulmonary Arterial Hypertension. Primary is used in place of Idiopathic, without known cause. 2. SPH Secondary Pulmonary Hypertension. When the Pulmonary Hypertension is caused by another disease or condition. Some examples of these are Lupus, Schlerderma, holes in the heart and heart valve disfunctions. 3. SOB Shortness of Breathe. When you can't breath and you can't catch your breathe. When you feel as if you are gasping and struggling to breath. 4. PCP Primary Care Physcian. Normally, the person that diagnosis you and then sends you to a specialist. Most health insurance companies need your PCP to refer you to the specialist in order to cover the costs incurred. 5. PH SPECIALIST A specialist who has studied extensively about pulmonary hypertension. They are able to administer meds especially for PH, and sometimes doing clinical trials. 6. RHC Right Heart Catheterization. The only true way of measuring Pulmonary Arterial Pressures (see Pap’s). In right-heart cardiac catheterization, the doctor places a thin, flexible tube, or catheter, through an arm, leg, or neck vein in the patient, and then threads the catheter into the right ventricle and pulmonary artery. Most important in terms of PPH is the ability of the doctor to get a precise measure of the blood pressure in the right side of the heart and the pulmonary artery with this procedure. It is the only way to get this measure, and must be performed in the hospital by a specialist. 7. PAP's Pulmonary Arterial Pressures. 8. PFT's Pulmonary Functions Test a variety of tests called pulmonary function tests (PFT’s) evaluate lung function, used in the diagnosis process. 9. O2 Oxygen. Most PH patients use Oxygen in their daily routine. Some use during day and night, others only nighttime. It is used when the pulse ox is lower than 88. Used to supply more air to the body, improving blood flow 10. Pulse Ox Pulse Oximeter. A small machine that, when placed on the tip of a finger, can read the amount of oxygen in the blood. When the pulse ox reads 88 or lower, it is time to use O2 more often, or maybe increase the amount of O2. 11. MRI Magnetic resonance scanning or imaging (MRI) is a method of looking inside the body without using surgery, harmful dyes or x-rays. The MR scanner uses magnetism and radio waves to produce remarkably clear pictures of the human anatomy. 12. CT Scan cat scan 13. CCB's Calcium Channel Blockers. Taken in pill form, CCB's are very effective for the treatment of pulmonary hypertension. The only problem is, not very many people respond to CCB's. There are many different types of CCB's. The most commonly used in PHFriends, an email list only for ph patients, caregivers and family are (in no particular order) Nifedipine ER , Tiazac, Diltazem, Procardia XL, Nadolol, Cardizem and Norvasc. NEW 14. C-PAP and Bi-PAP *** Tips for handling school aged children 1. Have your child eat breakfast and lunch at school. Most schools offer free or reduced meals if you are unable to work and you qualify. 2. Have your child prepare their outfits the day before, including socks, undergarments, shoes and any hair accessories. 3. Keep the hairstyles simple for the girls. Braids may look cute, but it is difficult for a mommie to keep her arms raised for so long, and for the delicate work of the braids, it may be too much on your fingers. 3. Keep all homework together in one spot. Making sure backpacks are fully supplied with all monies are included. 4. If possible, try to pay for all meals months in advance. For my three children, for 3 months of breakfast and lunch combined, it is just about one hundred dollars. 5. Most teachers now have Internet in the classroom. Keeping in touch through email has saved me a few trips to the classroom. 6. For class parties, always volunteer for products that can be store bought. Paper plates, cups, drinks, and chips with dip are my staples for class parties. 7. Get together with the parent of a friend of your child to trade of driving. Have numbers handy in case you are having a hard time in the morning. 8. Keep all dates of appointments handy for anyone to see, in case you have to leave for an emergency. That way, all appointments made in advance won't be lost. 9. Keep a list of phone numbers handy for such emergencies. 10. I always have baby sitters who can spend the night with my children, incase I have to go to the hospital over night. One quick call and they meet me in the Emergency room, and take the kids back to their or my house. *** Financial Aspects of Chronic Illnesses Along with the emotional and physical aspects to a chronic illness, you will have to deal with the financial aspect of it to. It is very very expensive to be sick. With or without insurance, you can find yourself sinking in bills from the hospitals, prescriptions, and any medical equipment you might need. Oxygen (o2) can become very expensive if you use it 24 hours a day 7 days a week. The C-Pap machine, used for people who have Sleep Apnea, (a condition in which a person, while sleeping, has episodes of not breathing) can also become a burden when needed continually. Fortunately for most, insurance covers a great deal of the expenses. But for many without insurance, or on Medicaid/Medicare, prescriptions are not covered. Right now, I am on a new drug that costs $100 a pill, taken twice a month and with delivery, costs $2,600 monthly. That is more than what we make as a family. My IV medication is even more than that monthly. Make sure that you get referrals when you need them and keep note of the authorization numbers they give you. Also, be sure to write down on a calendar when the referrals end. In an emergency, you won't be able to call for an authorization. Getting a referral for a specialist is very difficult if your insurance company does not classify the specialist as in network. Persistence is needed for getting your referral. Medications and Procedures that aren't deemed necessary by the insurance company, but are by your doctor, will also be difficult to get approved. What I found helpful is having your doctor write very strong and precise letters of why you need to see the specialist, or why you need the procedure. Keep copies of everything and make sure everything is written down for your personal records. Keep file folders for receipts and organization of your EOB (explanation of benefit.). Be sure you can read your EOB; if you have any questions make sure to call your insurance company or read the handbook most insurance copies mail when you signed up. You will receive an EOB for every single procedure that is done. This will show you what was billed to them, what they will pay, what is left over, and finally what portion of bill you will be responsible for. You might also receive a bill from the hospital or where ever you received treatment. Keep these for your records also. But do not pay anything until you receive your EOB. The insurance company has the final say of what you need to pay. It is also not inconceivable that you find mistakes on your EOB or your hospital bills. Keep close records and read your bills carefully. Many times we have had to call the hospital or clinic and ask them to resubmit the bill to our insurance company. Taking the extra time to read your EOB and bills can save you many hundreds of dollars. ***Be your own Advocate*** Being your own advocate is the best lesson I have learned through out my illness. By being your own advocate I mean, ask questions, take notes, learn about your illness, follow treatments prescribed no matter how hard they may be, and most of all take care of yourself, if not, who will take care of your children. Being your own advocate is a very difficult thing to do at first, but just like my mixing my medication daily, it became habit to ask questions, take notes, and learning about my illnesses. Chronic illnesses take so much out of us, not just our health, but our emotional welfare and that of our children, are affected by chronic illness. If our children watch us taking care of ourselves, they will learn by our actions, and later on, will take care of themselves. Taking care of you will become a habit, instead of a chore. Be your own advocate and your children will be your advocate as well as their own. My Mommie is Sick, Now what? *** Mommie and I are running and playing outside. We like to play hide and seek and ring around the Rosies. Mommie likes to chase me around and when she catches me, we fall the ground laughing! She loves to tickle me too! I love it when we play like that. Today, my mommie told me that she was sick. She probably won't be able to play with me very much, but she said she could still hug me and give me all the kisses I want. I told my mommie that I will always love her. My mommie visited the doctor today. The doctor said that mommie was very sick, but with medicines she can get better. I hope the medicine helps. Mommie is asleep in bed. Grandma is with me, and we are coloring together. Grandma said we need to play quiet games. Mommie is feeling better and we were able to go outside and play. I played and mommie watched. I think she is getting a little better. Mommie had to go to the hospital. Daddy says Mommie will be there for only a few days. The machines in the hospital are scary and make lots of noises, but mommie said she needed to be there. I think I’ll draw her some pictures to decorate the hospital room. Mommie was able to come home today! We made mommie a party, with a banner and a cake. I made a special welcome home card for mommie. She says she loved it! Grandma was here and made dinner for several days. We will have to take it out of the freezer and put into the oven. I like grandma's cooking! Mommie was able to sit outside and watch me play again! I think she is better now! I love my mommie! *** · 12. For those early mornings when the kids wake up but you really want to sleep in, individually packaged drinks and breakfast items are real good! Keep them in little hands reach and you can rest in without having to get up! For the older kids, microwave able breakfast things are great! **** 12 STEPS TOWARD A MEDICAL "MIRACLE" If you or someone you love is diagnosed with a life-threatening illness, here are the positive steps you can take to insure the best outcome possible. They don't add up to a guarantee, of course. There are no guarantees in medicine. But that's actually good news for people with a serious illness: Maybe you can't be absolutely certain that the best will happen, but you also can't be certain -- no matter what your doctor says -- that the worst will happen. 1. Take Control of Your Illness. You may think you're helpless, but you're not. Take control of your life back with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor's hands. 2. Insist on Options. Forget about second opinions. Look instead for second options. There are no absolutes in medicine, no inevitabilities. There are multiple solutions to every problem. You just have to find them. Don't be afraid of choices; embrace them. 3. Find the Right Doctor. Not all doctors are created equal. When you're seriously ill, it's worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death. 4. Build A Partnership With Your Doctor. A true partnership means there are special responsibilities on both sides. Your part is to be informed about your illness so you can ask questions -- you can never ask too many questions. Your doctor's part is to answer them all, fully and patiently. 5. Recognise That All Medical Decisions Are Trade-offs. Again, there are no right answers. Every decision regarding medical treatments involves weighing costs against benefits. To strike the right balance for you (everybody's balance is different) get all the information you can, then look carefully inside yourself and decide what really matters. 6. Sustain A Claim to Life. A good attitude -- call it optimism or "fighting spirit" or whatever -- isn't enough, no matter how positive. You have to do something. A will to live has to be accompanied by a commitment to living: join a support group, make plans, set goals, "renew your membership in life." 7. Find An Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your doctor as well as your illness. If you haven't got enough fight to go around, enlist an advocate to do the fighting for you. 8. Subdue The Enemy Within. Sooner or later, you'll hear a voice question: "Why Me?" Learn to recognize self-pity and resist it. Questions that never bother you; don't let this one. Not now. Another feeling to resist: guilt. Yes, loved ones are going through hell, but it's not your fault. 9. Build A Support Network. You absolutely cannot get through this alone. You have to depend on people. Family, friends, caregivers, support groups, strangers, it doesn't matter, as long as it's somebody. But don't expect more of people than is reasonable. Don't expect family or friends to change just because you're sick. Don't expect yourself to change. 10. Don't Let The Disease -- Or The Treatment -- Change Who You Are. Don't let the "I'm Still Here!" syndrome get the better of you. Denial and surrender are bad, but survival at any cost is also dangerous, just in a different way. If the disease, or the treatment, changes who you are, then you've lost the battle anyway. 11. Know When To Draw The Line. There's a line beyond which the price of survival is just too high, a line between what is worth fighting for, and what is not. Thresholds of pain vary, as well as thresholds of fear and uncertainty. Doctors often draw this line for patients; draw it for yourself. 12. Never Say Never. Everybody reacts to disease differently. Every body reacts to drugs and treatment differently. Every doctor has had patients who defied all the medical textbooks and prognoses. They've all seen "hopeless" cases turn around. For all the advancements in medical knowledge, the human body remains wondrous strange-- and full of surprises. There is not one word I could add to the importance of this message. I would just add this, "read it often till it is a part of how you feel because how you feel is how you are." **** (3) Acronims those with lung diseases may use on a regular basis, such as those with pulmonary hypertension 1. PPH Primary Pulmonary Hypertension, soon to be changed to PAH Pulmonary Arterial Hypertension. Primary is used in place of Idiopathic, without known cause. 2. SPH Secondary Pulmonary Hypertension. When the Pulmonary Hypertension is caused by another disease or condition. Some examples of these are Lupus, Schlerderma, holes in the heart and heart valve disfunctions. 3. SOB Shortness of Breathe. When you can't breath and you can't catch your breathe. When you feel as if you are gasping and struggling to breath. 4. PCP Primary Care Physcian. Normally, the person that diagnosis you and then sends you to a specialist. Most health insurance companies need your PCP to refer you to the specialist in order to cover the costs incurred. 5. PH SPECIALIST A specialist who has studied extensively about pulmonary hypertension. They are able to administer meds especially for PH, and sometimes doing clinical trials. 6. RHC Right Heart Catheterization. The only true way of measuring Pulmonary Arterial Pressures (see Pap’s). In right-heart cardiac catheterization, the doctor places a thin, flexible tube, or catheter, through an arm, leg, or neck vein in the patient, and then threads the catheter into the right ventricle and pulmonary artery. Most important in terms of PPH is the ability of the doctor to get a precise measure of the blood pressure in the right side of the heart and the pulmonary artery with this procedure. It is the only way to get this measure, and must be performed in the hospital by a specialist. 7. PAP's Pulmonary Arterial Pressures. 8. PFT's Pulmonary Functions Test a variety of tests called pulmonary function tests (PFT’s) evaluate lung function, used in the diagnosis process. 9. O2 Oxygen. Most PH patients use Oxygen in their daily routine. Some use during day and night, others only nighttime. It is used when the pulse ox is lower than 88. Used to supply more air to the body, improving blood flow 10. Pulse Ox Pulse Oximeter. A small machine that, when placed on the tip of a finger, can read the amount of oxygen in the blood. When the pulse ox reads 88 or lower, it is time to use O2 more often, or maybe increase the amount of O2. 11. MRI Magnetic resonance scanning or imaging (MRI) is a method of looking inside the body without using surgery, harmful dyes or x-rays. The MR scanner uses magnetism and radio waves to produce remarkably clear pictures of the human anatomy. 12. CT Scan cat scan 13. CCB's Calcium Channel Blockers. Taken in pill form, CCB's are very effective for the treatment of pulmonary hypertension. The only problem is, not very many people respond to CCB's. There are many different types of CCB's. The most commonly used in PHFriends, an email list only for ph patients, caregivers and family are (in no particular order) Nifedipine ER , Tiazac, Diltazem, Procardia XL, Nadolol, Cardizem and Norvasc. NEW 14. C-PAP and Bi-PAP *** Tips for handling school aged children 1. Have your child eat breakfast and lunch at school. Most schools offer free or reduced meals if you are unable to work and you qualify. 2. Have your child prepare their outfits the day before, including socks, undergarments, shoes and any hair accessories. 3. Keep the hairstyles simple for the girls. Braids may look cute, but it is difficult for a mommie to keep her arms raised for so long, and for the delicate work of the braids, it may be too much on your fingers. 3. Keep all homework together in one spot. Making sure backpacks are fully supplied with all monies are included. 4. If possible, try to pay for all meals months in advance. For my three children, for 3 months of breakfast and lunch combined, it is just about one hundred dollars. 5. Most teachers now have Internet in the classroom. Keeping in touch through email has saved me a few trips to the classroom. 6. For class parties, always volunteer for products that can be store bought. Paper plates, cups, drinks, and chips with dip are my staples for class parties. 7. Get together with the parent of a friend of your child to trade of driving. Have numbers handy in case you are having a hard time in the morning. 8. Keep all dates of appointments handy for anyone to see, in case you have to leave for an emergency. That way, all appointments made in advance won't be lost. 9. Keep a list of phone numbers handy for such emergencies. 10. I always have baby sitters who can spend the night with my children, incase I have to go to the hospital over night. One quick call and they meet me in the Emergency room, and take the kids back to their or my house. *** Financial Aspects of Chronic Illnesses Along with the emotional and physical aspects to a chronic illness, you will have to deal with the financial aspect of it to. It is very very expensive to be sick. With or without insurance, you can find yourself sinking in bills from the hospitals, prescriptions, and any medical equipment you might need. Oxygen (o2) can become very expensive if you use it 24 hours a day 7 days a week. The C-Pap machine, used for people who have Sleep Apnea, (a condition in which a person, while sleeping, has episodes of not breathing) can also become a burden when needed continually. Fortunately for most, insurance covers a great deal of the expenses. But for many without insurance, or on Medicaid/Medicare, prescriptions are not covered. Right now, I am on a new drug that costs $100 a pill, taken twice a month and with delivery, costs $2,600 monthly. That is more than what we make as a family. My IV medication is even more than that monthly. Make sure that you get referrals when you need them and keep note of the authorization numbers they give you. Also, be sure to write down on a calendar when the referrals end. In an emergency, you won't be able to call for an authorization. Getting a referral for a specialist is very difficult if your insurance company does not classify the specialist as in network. Persistence is needed for getting your referral. Medications and Procedures that aren't deemed necessary by the insurance company, but are by your doctor, will also be difficult to get approved. What I found helpful is having your doctor write very strong and precise letters of why you need to see the specialist, or why you need the procedure. Keep copies of everything and make sure everything is written down for your personal records. Keep file folders for receipts and organization of your EOB (explanation of benefit.). Be sure you can read your EOB; if you have any questions make sure to call your insurance company or read the handbook most insurance copies mail when you signed up. You will receive an EOB for every single procedure that is done. This will show you what was billed to them, what they will pay, what is left over, and finally what portion of bill you will be responsible for. You might also receive a bill from the hospital or where ever you received treatment. Keep these for your records also. But do not pay anything until you receive your EOB. The insurance company has the final say of what you need to pay. It is also not inconceivable that you find mistakes on your EOB or your hospital bills. Keep close records and read your bills carefully. Many times we have had to call the hospital or clinic and ask them to resubmit the bill to our insurance company. Taking the extra time to read your EOB and bills can save you many hundreds of dollars. ***Be your own Advocate*** Being your own advocate is the best lesson I have learned through out my illness. By being your own advocate I mean, ask questions, take notes, learn about your illness, follow treatments prescribed no matter how hard they may be, and most of all take care of yourself, if not, who will take care of your children. Being your own advocate is a very difficult thing to do at first, but just like my mixing my medication daily, it became habit to ask questions, take notes, and learning about my illnesses. Chronic illnesses take so much out of us, not just our health, but our emotional welfare and that of our children, are affected by chronic illness. If our children watch us taking care of ourselves, they will learn by our actions, and later on, will take care of themselves. Taking care of you will become a habit, instead of a chore. Be your own advocate and your children will be your advocate as well as their own.

continue to my book in thru the eyes of a child.