A new year filled with all new possibilities

I haven’t posted in awhile. I don’t post that often anyways because I am a slacker, but it has been about 6 months since my last post. Maybe it was from pure laziness, lack of energy, or just not wanting to communicate with the outside world. Who knows. Our family has had a jam packed last 6 months, to say the least…

2015 was a year of many challenges, including 4 ICU stays for me. Even though the hospital stays and doctor visits seemed never ending, we did manage to get some things done in between. For example: we sold our old home that I bought in 2004 and moved into a new home that is ADA compliant and works well with my medical needs. It is 2x the size of the last home, so that has been an adjustment. More to clean, more walking to get where I need (which is good for me, but difficult at the same time), and just overall getting used to a new home. I have never lived in a place like this. All nice and fancy like. My hillbilly roots are like, “WHOA”! I love our new house and am glad we made the decision that we did to move here. It has benefited us in multiple ways, and even has given Phoebe a new lease on life it seems. She is more active and has lost weight. We attribute this to her not having to use steps anymore. This house is completely flat, not a step to be found. Which is wonderful for the both of us!

Another challenge has been my health. For some reason my body thinks that it needs to latch on to infections and virus’ and not let go. I have been sick since November, and cant seem to shake it. On top of being sick, my central line is wanting to come out. I am not ready for a replacement, as that will mean another hospital stay. I will do it when I have to, but not before. These lines aren’t meant to last a lifetime, but I haven’t even had mine 2 years yet. The “cuff” which holds it in place under my skin in my chest, seems to be defective and the balloon behind it has started to deflate. At one point right before Christmas, the cuff had actually come out and you could see it when I changed my dressing. As aggravating as it was, my nurse Julie (my angel), has let me manage it on my own since I don’t seem to be systemic and the line still has some “tug” on it. It will need replaced, and I will probably find out tomorrow at my doctor appointment, when that is going to happen. I am also in the process of getting the bariatric sleeve procedure done, once I finish the paperwork and get with insurance and start my initial meetings with the docs at Ohio State. I have to go out of state to get this done due to the fact that no one has ever performed this surgery on a PAH patient, in the network of the hospital I go to. So, I did my research and asked around. It was either Ohio or Boston, and since Ohio is closer and their reputation is pretty decent, I decided to go with them. My team is close and can be there if needed. It is a risky surgery for anyone, but even a higher risk for me. However, it is necessary. I need to be at a certain weight to get on the heart/double lung transplant list, and I am never going to get there be sedentary like I am because of my PAH. I try to exercise, but my body decides what my limit is – not me. If I overdo it, I’m asking for it. That brings me to where I am at with it. I have to get this surgery, not only to possibly prolong the progression of my disease (losing weight will take the added pressure of being “obese” off of my heart which in turn could help my PAH), but to be able to have my name on that list – if and when the time comes for me that I need a transplant. I don’t want to hear that there is nothing left for me because I am too heavy in their eyes for transplant. I am going to do what I have to do to stick around for as long as I can! Hopefully, within the next few months that process will start moving and I can get this stage over with and move on to the next!

A number of emotionally draining events have taken place in 2015 as well, especially in December. I made the decision to put one of our dogs, the oldest Blaze, down. He was getting to the age where it was coming and needed to be done. It was hard and I honestly hated doing it. I miss him, as does the rest of the household. Especially my mother. He was her granddog. He really was her dog, he had attached himself to her in the last few years; followed her around, slept with her and everything in between. We were having issues with him using the potty in the house, and it just became overwhelming. His ashes are now on the mantel and soon I will have a picture printed to put on his memory box with his name tag.

December, like I said, was an emotional month. Not only was it our first Christmas in our new home, it was the first Christmas in 12 years without Blaze. It was bittersweet. Then trying to bring the New Year in happily, only to be thwarted by my husbands former job. Notice I say former. He was let go on December 29th. We both believe it was due to his use of FMLA time, but they cited it as “not performing job duties as assigned within the 165 probation period” of a new position. Not only was he doing his job, but also another position that wasn’t filled and was at the beck and call of the many people who were over him in position. At first it was a shock, but I worked for this company and know how they work. They like to fire the good people who actually know what they are doing and can fix things and make the place run correctly, and keep the ones who are willing to bend their values and morals for a corrupt company. It’s only a matter of time before all the good people are either fired or leave of their own volition. Instead of being bitter about it, we are trying to look at it like it was a blessing in disguise. All will work itself out in Gods time and in His plan. Have to have faith in that! He will provide!

Entering in January, I’m still holding my breath wondering what’s going to happen next? So far so good. Today I found out that I have officially been made a Support Group Leader for PHA in Columbus, Indiana. I’m so excited to take on this role. I’m a natural leader and feel that it is my own personal mission to bring as much awareness to patients, caregivers and the public – as possible! If my story, my advice, my friendship…can change just one life, or if my awareness raising skills help fund a cure – then I have totally served my purpose! I owe a lot to the Pulmonary Hypertension Association. Giving back to them through leadership, is only a small bit of a thank you. I hope to make them, and those who believed in me to do this, proud. I will definitely be blogging about my experiences as a SGL (nothing private will be shared).

I also decided that starting in January we were going back to church. First Sunday of January, that is exactly what we did! It felt so wonderful to be back in our church, our home. The Ridge speaks to me directly every time we are there. The topic was “worry” and basically not to do it. It couldn’t have been more appropriate for what I was doing at the very moment I read the pamphlet. David pointed out to me that there was a new women’s bible study starting that coming Thursday, so I signed up for it. I want to meet more people at the church and have that fellowship with the women of the church. Thursday came and I went to bible study. We are doing an 8 week study on “One in a Million” by Priscilla Shirer. She is a powerful speaker and loves the Lord. It was nice to hear a woman’s perspective on learning to have a closer relationship with God. I have been doing my study this week and am looking for to Thursday morning.

Wrapping up, I feel like I need to ask for prayers for all of the families who have lost someone recently, or ever. The pain they are feeling is real, and they need prayer warriors to lift them up into Gods healing grace. We have lost so many in our PH community lately, those families also need lifted up in prayer. My heart breaks for them. Breathe easy is always what we say. Breathe easy, sweet angels…

Here’s to a New Year that seems hopeful. Hopefully my blog wont stay as dormant this year! 😉

-Nichole

Looking into the future

I have been sitting here staring at this blank white page for a while. I have a lot to say, but I do not even know where to start. I usually have a very easy time formulating a blog post, but not today. How about we just go with what is on my mind? Maybe that will be brilliant and I will not have to edit so much!

The last few weeks have not gone as planned. To be honest and blunt, they were a complete f*cking train wreck. I started feeling bad, and it just got worse and worse. I contacted my nurse, Julie, and let her know what was going on. Of course I immediately needed to be seen and through an echocardiogram they determined that I was in fluid overload and needed a right heart catheterization procedure in the following days, and then an ICU stay to get the fluid off and to readjust my medication. I was not excited about this; however, I had known it was coming. After almost 2 years with this disease, I have learned how to read my body and can tell when something is not right, and I am usually correct on what is wrong. When one is diagnosed with a terminal illness, you become medically well versed and knowledgeable rather quickly. Which can be good and bad. During my appointment with my doctor to go over the echo, I told him my fear that we were getting close to the “there is nothing else we can do for you talk”. He agreed, and stated that he and my other doctor were becoming afraid of that as well.

Therefore, due to that conversation I arranged to go to the funeral home before I went into ICU and get my wishes down on paper. I had already planned it, just never actually wrote it down. So, David and I went one night after work and made the arrangements as best we could. It was hard, so very hard. I was focused on what everyone else would need. I have concluded that my funeral will not be about me, it will be about the people who are there. I wanted them to see my face, but not in a casket. So we decided on having a picture board and a slide show running with music. Pictures of family, friends, good times, bad times, the babies, and the kids, everything…will be in the slide show. I document my life through photos and I want people to remember those times. Not me laying doll like in a casket. Cremation was always what I wanted, so that was stated as well. My urn will be in the memorial service, and then taken to Willow Springs, Missouri – where I will be buried next to my father and the rest of my family. There will be memorial urns for family to keep as well. I had to pick out a poem to put in the announcement cards and I found myself gravitating towards words I would say, so I think the one I chose will fit my service perfectly. I am also including a poem I wrote on the back of it, just so my actual words are forever memorialized. David cried as we read these, I think it became all that more real for him in that moment. We held hands, wiped our tears and got through it. There are other things that were done, but I will leave that for my husband and mother to show and my services will show them as well. In addition, the obituary will mention PHA and my commitment to raising awareness.

We spent the weekend as a family, just taking the time to be together and not worry about anything (except birthing Hopes kittens). David took me on several cruises around the country, just so I could see the sunsets, the wildlife and the sky that I love. We went to Walmart and bought some socks for my ICU stay. It is the small things with me, and with him. Those are the lasting memories, the cherished moments. Singing along to a tune in the car on our cruise, holding hands and just enjoying the time together.

Wednesday came and we left for Indy early in the morning to get to my appointment by nine. As we rode in the car, I looked out the window and reflected on everything that had happened in the prior week and just went silent. I had to process it and let it all soak in. Watching the scenery of farmland pass by was very hypnotic as usual, but for some reason I found it beautiful that morning, which I never have before. I am sure that was God telling me it was going to be ok.

When we got to the hospital, I was taken back into the cath lab and prepped for my procedure. Afterwards, mom and David were allowed to come back and we prayed over the bed for me, and for the doctors to have the skills and knowledge to get me through the procedure safely, as well as get a diagnosis that could be dealt with. I said my “see you later” to mom and David and was rolled away. Those are the coldest moments. When you are rolled away into a hallway, away from your loved ones and all you hear is the wheels spinning and feel the cold of the AC in the halls. It freezes you to the bone, and not just because of the cold hallway and the fast ride to the lab, but because it is a feeling of loss and dread at the same time. Fear.

I laid on the operating table as I was draped with a surgical tent of protection, as I like to call it. I started to tear up and told myself not to do it. I knew that a panic attack was starting (always happens) and I was trying to talk myself out of it. Soon, I felt pressure on my neck and heard a voice I recognized. The voice of one of my doctors, Caccamo. He was reassuring me that it was going to be ok, and they were starting. Caccamo and all my other docs like to use me as a guinea pig, so his fellow did my procedure while Caccamo talked him through it. This causes added discomfort and pain. It brings my anxiety to peak, and caused me to de sat a bit from holding my breath. I understand they have to learn, but Caccamo has a tender touch and does not shove the cath into my neck, this fellow did. It really did hurt and I cried. Thankfully they got what they needed, stitched my cath in place and finally let me breathe. I also received a shot of something to calm me down, which was nice. I hate panic attacks and always end up puking and panicking shortly after this procedure.

I was rolled upstairs to the ICU and put in my room. Had the normal meeting with the nurse who would be with me and did all the ICU things you have to do. Which consist of, cleansing your whole body with these special wipes, being hooked up to all their machines, being re-gowned, and meds gone over. Then the doctor comes in and tells you what is up, which in my case was that my PAH is worsening, I am in right ventricle failure, and I was in fluid overload. I asked him bluntly how much time he thought I had left if this treatment try, did not work. He said that was a hard question to answer but that if we could not get this turned around, he did not think it would be weeks, but within the year. Meaning that if we cannot slow down the progression of my PAH, slow down the symptoms, or at least make them bearable, then I will not win. I do not accept that, and never will. Neither do my docs, thank God. They fight with me.

Over the next 3 days, I was cathed due to IV diuretics, which actually worked out better since I released over 6 liters of water in 36 hours…I would have been up and down to the bathroom every 5 minutes. I was put on and still am on fluid restriction of 50 ounces a day. Also, 2000mg of sodium a day. This is a huge adjustment to make. The sodium watching I am used to, the fluid restriction – not so much. I love to drink my flavored water and whatever else I want. Being limited…well it sucks. While I was in ICU, it was easier, because they controlled what I could have. Those days were long, sitting there with nothing but my thoughts. David had to work and I wanted my mom to get some sleep, so I asked them to please only come in the evenings before mom had to work. I realized on the first day how hard that actually was. To be alone, completely. It was not something I enjoyed, and I had a panic attack the first day because I could not stop crying. Again, I had to be drugged. It did help calm me down and stopped the waterworks. I am such a baby sometimes. Even though we may not talk the whole time they are there, just having people there is a comfort. A cold sterile hospital room is not comforting. I did finally start watching TV shows on my Kindle, and that distracted me. I was released on Friday with three new medications and instructions to titrate my Remodulin up 2ng, 2 times a week – until we hit 80ng. I am currently at 52ng.

I go to the doctor tomorrow; I have a lot to tell him. It seems like things work so well when I am in ICU and then when I come home, I tank. I do not understand why home is bad for me. I have already gained 3lbs back and I cannot walk more than 3 minutes on my treadmill without de-sating into the 80’s. It really aggravates me and I do not get it. I brought this up in the hospital and was told it was because of the IV diuretics that they worked better; well…I cannot stay in the ICU forever, so something has to give. I am already getting depressed and beat down again. It is almost like a failure each time this happens. You are knocking on deaths door one minute, climbing mountains the next and then crawling under a rock. Positive is something I pride myself on these days, and it is getting hard. I feel like I am slamming myself into a cement wall each day and it is not even cracking. I hate this disease and the havoc it has wreaked on my body, my emotions, my strength and especially my loved ones.

I will continue to PHigt, that will never change. I will continue to put my faith in God, and know that He has my back and that I am living for a purpose He has given me. I can face this, I can do this, I can and I will. I struggle, we all do. I falter, we all do. However, I will pick myself back up, get my sh*t together and kick PAH ASS!!!!

Thank you as always to my prayer warriors, my good vibers, and my up lifters. I love you all and would not be able to PHight this without you. God listens, and He listens well.

Changes and other things.

Every ending, is also a beginning. I would like to believe that is true, as we embark on many changes in our lives. Even though David and I have been married a year and a half and we are both definitely not on our first marriage, nor are we in our younger years. However, buying a car together and now selling our house and buying a new one together…whoa. Those are big changes and huge decisions. I almost feel like an adult, even though I have done this before on my own. Doing it together though, that is a big deal. We are one equal unit as a couple, so it only makes sense to blend everything and make it our own. Together. That is truly, what it is all about, being together, being happy and being a family. Our beginning is continuing. The endings however, some are bittersweet. Like selling this house for example. There are some wonderful memories here; there are some not so wonderful memories here. This was my first home, my first “big girl” purchase aside from a vehicle. I have mixed emotions about it. Realistically this home is not going to be good enough in the long run for our family. We are combing families and moving Aunt Mary in with us. It also is older and not as accessible as I need it to be for my health issues, nor is it up to date in any way and I honestly do not have the energy to put into updating it. I would rather just sell it and buy up, then go through all of that mess and stress. I am sad to think about packing up and moving out of here though. I have always loved this area and have for the most part, loved living here. It will be strange to drive to a new home and not come home here. Home is where we make it though, so wherever we all are is going to be home. I am excited yet nervous about all of it. It will all work out as it is supposed to and when the time is right. I have faith in that.

The last few months have been hectic, as always. My grandmother came to visit in April for my birthday. That was wonderful having her here for two weeks. She was able to see all the babies and get to visit with mom, meet Aunt Mary and hang out with me. We had a very nice time and I am so glad she was able to make the trip. I always love spending time with her since it is not often, as we live so far away. I spent a lot of time with her as a child. I spent summers here in Indiana with her and my other grandma (I lived in Arizona until I was 20), and then she always flew out for Christmas every year. We always took special trips when I would come to visit and she would make sure I got to see family. She is amazing and I am proud to be her granddaughter.

After grandma left, it was time to get the house ready and we decided to put it on the market. In the month leading up to grandma’s visit, we had been cleaning out the house of junk and whatnot that had collected over the years. Took several weeks to get it all done, but we did it and it made painting much easier! Friends came over to help paint and it looks great! We put the house on the market on a Friday and by the next Friday had done nine showings. No bites yet, but I have faith the right person will come along who sees the potential in this place and wants to put the work into it to update it. We have found several homes we are looking at, one in particular I really like because it is ADA Handicapped accessible. It is an awesome house and is perfect for our needs. All of us. I am hopeful everything works out with that and trying not to stress too much.

David took me on a much-needed getaway, which was also an item on my bucket list. A trip to Gatlinburg and Pigeon Forge! It was so much fun. We stayed in a little resort in Townsend, TN with a beautiful view of the mountains. We went to most of the tourist attractions, but I have to say my favorite was Parrot Island and Garden of Eden, a bird sanctuary. They had gorgeous rescued birds of all shapes, sizes and colors. It was amazing to be able to interact with all of these gorgeous animals. I love birds and sadly Seven had passed away the week before. So, going there was like a nod to him in a way. I miss him terribly and am still very sad about his death. It should not have happened that day. He was supposed to live to be old with us. He now flies free over The Rainbow Bridge with all our other lost babies. Getting back to the subject…the trip was wonderful. It was 3 days jammed packed with riding in the car and checking out cool places like The Ripley’s Believe it or Not Museum and Aquarium. I can now check those off my bucket list! It was very sweet of David to surprise me with that, I needed it. I was having a hard time with some emotions, and he could sense that. He knows me so well.

As of late, my emotions have been getting the best of me. I think it is my decline in health again. My chest pains are returning and my breathing is getting worse again. I am more fatigued day by day…and have less and less energy. I hate to think that my IPAH may be progressing again, I was doing so well. I am hoping it is just all the businesses and not the latter. It is scary though, every minute. I do not talk about it much, I hate scaring my family. Plus, they immediately think I need to go to the hospital. I think I am ok. I could be wrong though. This disease is a bunch of crap to be completely honest. I have seen more PHriends die this year than last, and it’s not even June. Lives that have so much left, taken so soon. Moreover, after so much suffering. Some may not see it because we do not “look sick”, but we suffer. Trust me. When just taking a shower is almost pure agony because you can barely breathe and your legs and arms feel like concrete because you are obviously not getting enough oxygen throughout your body…that is not normal, that is pain and suffering. Getting dressed takes as much energy as working a full 8 hour day. Going on a simple trip leaves you so exhausted you feel like you are dying and you have a husband who feels guilty over it. That is suffering people. My husband should not feel guilty for taking me to a place I have always wanted to go, for going on an adventure with me. I am alive and I can do it now. I do not want to have not done it and regretted it. I will take a week of feeling like death for those few precious days. Nevertheless, thanks to this disease, he feels bad. None of us should ever feel guilty for living, but this stupid disease makes your body feel that way. You feel like everything you do is taking minutes off your life. Is it not? That is life, correct? Why is it so hard for us terminals? I am really trying to understand this. It is totally a damned if you do, damned if you don’t situation. If I do not live, I will regret it, if I do, I pay dearly for it. That is not fair, and is causes suffering. I am tired of fighting off the “suffering” demon and tired of watching people I care about going through it. How much fight are we expected to have? How much are we truly expected to put up with?

People tell me I am the strongest person they know… but I feel so weak. I am not strong. I have to ask help with everything anymore. I have to almost be babysat at all times. How is that strong? Because I chose to live with it? I guess. I do not know why I am being so negative on this post; I guess I just have to get it all out there. These feelings are real and they are very hard to keep bottled up. You feel like you are going to explode at any minute. My heart already feels that way constantly…I do not need the emotions to do the same!!

 

Today I woke up,

I am thankful my feet hit the floor.

Yesterdays behind me now,

Today opens a new door.

To where I am not sure,

However, I know it is the right way.

How do I know?

Because I believe in what you say.

You say I will get through this,

So I continue to fight.

Even though I do not feel strong enough,

Nothing is taking my light.

I will never give up,

I will never go down.

I have this cross to bear

I will wear it like a crown.

Someday my beginning will end,

And my eyes will peacefully close.

Remember on that day,

That my life was lived, how I chose.

It does not matter if my illness took me,

Or I passed from old age.

“She never gave up”,

Is written at the end of my page.

N.B. 2015

Sometimes, isolation can get the best of you

I have not blogged for months. I have been meaning to; just have not done it. Between being in the ICU in January after visiting my grandmother in Missouri for the holidays, and David’s mother passing away. I just have not felt like it, nor had the time honestly. Then months pass, and it becomes more than not blogging, it becomes isolating myself. Which is what I have done. I got sick again, with a cold in February, which has hung on still to today. Being sick and already being “sick”, is no fun. PAH comes with a plethora of wonderful life altering effects, one of those being constant exhaustion. I can brush my teeth and become tired. So, having a cold on top of that, I am really run down. Add to that seasonal depression and trying to clean our house out to paint – I have ZERO energy to do anything, including blog.

Communication is not something I have always been particularly good at, especially as of late. It seems that I “forget” a lot, and it is not an excuse, it is the truth. Days pass and I have not contacted a friend back who has called me, or text. It is a sad thing, but it is my reality these days. I do not intentionally try to shut people out, but it appears that it what some may think. I do apologize for that, but at the same time, I do not feel that I need to.

I am not normally one to put things out there, not my business. Unless it is to educate or benefit someone in some way. This time I think that my own personal feelings on how I have been feeling lately, are an issue that I should address, and publically. Not to call out names of people, nor to get a pity plea, but for people to understand more of what I am going through in my life, in my mind and in my heart and because I know that people who share my illness, and even those who do not – they can relate to this.

When I was diagnosed back in November 2013, it did not take long for some, if not the majority of my “friends” to stop talking to me. They either did not know how to deal with my illness, or did not want to. I completely understood, although I was hurt. I still have my true friends, who have stood by my side and put up with my mood swings, my “iffy” ability to hang out and actually see them, to my lack of being the first to call or text. They also keep in touch, even when I slack off on it. I have always been one to isolate when I do not feel good or am going through personal issues. I have been in a slump since before the holidays and have not been able to get myself out of it. My disease continues to control me, and even after a year, I am still having a hard time giving up the control of my life that I once had. Which in turn causes me to be very emotional and want to hide away. I do not want to be the “sick” friend that slows everyone down; I do not want to be the “sick” friend who cannot hang out. I want to be the old Nichole who did whatever she wanted, but I realize that was not how my life was supposed to go. I embraced that at first, and kept a very positive attitude, regardless of this crappy hand I have and many others have been dealt with life. To be honest, I am losing my positivity and I feel like I am losing my will to fight. I know it is me who has to deal with this and no one can fix what I am going through, but what I do not need is guilt. I have enough of that. I carry guilt with me every day for not being the person I used to be, not being the friend I could be, and no being able to live the life I miss dearly every day. Am I blessed? I sure am. Should I be grateful? I am. Do I have hatred toward PAH and this diagnosis? You are damn right I do. Things have been stolen from me because of this that can never be replaced. Life literally has been taken from me due to the incompetence of doctors. I lay in bed and cry myself to sleep because I am so exhausted or feeling fearful of not waking up, but having to sleep because my body requires it to go on. I sleep a lot. I do not sleep well at night and I am busy as I can be during the day, so I nap. I miss phone calls, texts, visits. I try to return them, but I also realize others have their own lives and I do not want to bother them. I also sometimes just do not feel like talking, and I know everyone can relate to that. Some days you just want to be left alone.

It is a daily struggle to live. I have lifesaving medication pumped into my body daily. Moreover, even though it is lifesaving, it causes major side effects. I have to deal with those. No one else does. These side effects are daily and can cause problems that last weeks. My disease alone causes problems that can last for weeks or months. When was the last time you went shopping and had to stay in bed for 2 days afterwards? It is not fun. It is no way to live. I deal with this slap in the face daily. I try not to pity party cry to everyone about it, so sometimes I have nothing to say because I do not want people to constantly think I am complaining. Now I know what people will say to that. If they are your true friends, then you have nothing to worry about. I had a friend tell me today that I was crazy to think that our relationship was shallow to even ask if he was mad at me because of my lack of contact. And I know this, it is just hard to contact your friends to tell them yet again you do not feel good. It is repetitive and I feel that will push people away even more. I am sure I am wrong. I do though; feel like because of what has happened in my life up to this point, with friendships, that sometimes, even though you should not with certain people (because you know better) that you guard yourself from hurt. I have had to prepare my own funeral. I know people are going to hurt, and I know it hurts now to have to think about that. Nevertheless, I am not dead yet, and it hurts my feelings just as much that I am treated as if I was. So yes, I guard myself. Even from those I should not. You never know who is going to walk away.

I do not know when I am going to die, and I know; we are all dying. Most however, do not have to deal with knowing it could come at any second. They do not think about it like that. I do not know many normal people who sit around and ponder when their last moment will be, except for the terminally ill. I bend over to pick something up off the floor and I feel a rush to my head that takes my eyesight, my hearing, and my balance away – immediately. This happens at least 50 times a day. My heart races and my BP drops. Those are scary moments. The chest pain is unreal and it is truly terrifying. I roll over in bed at night and lose my breath, to the point where I have to sit myself up to catch my breath. Putting my clothes on almost garners a nap, as well as taking a shower. These are things many take for granted and do not realize how people like myself feel and have to deal with it. If someone calls and asks if I want to run and grab an ice cream, it is not easy for me to say sure and just run out and do it. I have to make sure I have oxygen, that my medicine is good, that it is not too cold or windy, that the place I am going is handicapped accessible and then I have to get dressed, which let’s face it – when you are home all day every day, you stay in your jammies. So, that takes time. By then the ice cream is melted and there is nowhere to go. It is easier to say no than to exhaust myself. I miss out on a lot. I hate it. I hate having this disease and I hate to have to let it control me, sometimes. It does not all the time, but right now and for the last few months, it has. There is nothing I can do about it. I do what I can and I rest the rest of the time.

There are days I wish I was gone, and the mourning period was over, and my family and friends could move on with their lives. I would no longer need a caretaker; I would no longer be a bother or a worry. I would be a memory, and those are the best. I see people with PH/PAH pass away who have children and I think, why couldn’t it have been me? Their kids do not deserve to grow up without their parent. It is selfish to want to take yourself out of the equation, but at the same time, it would solve so much. I remember laying in the hospital bed in the ICU back in January; my BP was 82/35. I prayed for God to take me. He did not. All I could think about were my family and friends I would leave behind. The tears flowed and I cried myself to sleep even through the alarm of my machines going off. It was not easy, it still is not.

Even as I type these words, I know I will never give up. I am not the type to lose. PAH may take me, but not because I let it. My apologies to those who feel like I am pushing them away or have abandoned them. I am still here and I will try harder, but I might need help. First step is admitting, right?

Attempting to embrace the season

Christmastime is a time when you are supposed to be happy and festive. This year, I am having a hard time getting into the holiday spirit. Do not get me wrong, I want to be happy and chipper and glad that it’s Christmas and I am getting to spend it with the ones I love. I have a ton of blessings in my life, too many to count actually. Yet, I still feel melancholy and just want to cry. Why is that? Tis’ the Season to be Jolly….right? It is very difficult to be “jolly” when you see friends and loved ones going through pain and misery. The loss of a child, the first Christmas without your beloved daughter/son, Christmas missing your parents, a pet lost…I could go on and on. I feel these peoples pain, and my heart wrenches for each one of them.
Then I realize I am one of them. One day my family will have to go through that. The first holiday without me. I feel like I am being selfish even thinking of myself, but I am not really. I am thinking of my family and the pain and anguish they will go through. I can see this in others who are going through it right now. I do not want to see my family and loved ones go through that. It is extremely hard to process that that day will come and there is nothing anyone can do about it. I worry so much about this. It actually never leaves my mind. I worry how my mom will go about her days without me. How my husband will have to sleep alone at night. My doggies will not wiggle butt for mommy anymore. They will be sad, and wondering where mommy is. My phone will not get texts from friends anymore, because they will have no one to answer them. </3
I tease my mom and David when we are doing things that annoy them or things they know I am OCD about. I am like, “you will miss this when I’m gone” and we laugh about it. Mom will say, “not really” and David will say, “nope, cause you’re not going anywhere.” I just shrug and tell them they will all do my little rituals because they will miss me doing them, and being so demanding that they are done. It makes it a little bit easier to make light of the subject of my impending death, but it does not make it any less real. It will happen, we just do not know when.
Our goal is for me to a long-term survivor. I have passed one year, so only seven more to go to be considered long-term. The only major problem right now is that my doctor wants me at 200lbs to be eligible to be put on the transplant list. He says he will not comfortably do my transplant until I am at a safer weight. Well, I am trying to get there, but how I am supposed to lose weight when all I can do is sit on the couch and do nothing. Because, when I do something, like go to the bathroom, my heart rate shoots up to 125 and my O2 drops into the 80’s. I cannot exercise…I can barely walk. And do not even get me started on the continuous chest pains. :/
All of this going through my mind 24/7 makes it rather difficult to be cheery. I try to show a positive outlook, and a smiling face. I do a pretty good job of it. Seriously, do not get me wrong, my thought process on many things has changed over the past year. I have learned to cherish the little things, be appreciative of what I have and who cares for me, learned to laugh off what I would use to consider catastrophic…like bulldogs chewing the coffee table. Big deal. A coffee table can be replaced. They are puppies and part of the reason I smile every single day. I laugh at my husband’s silly antics. I would not trade him for the world. I just do not want to leave this happiness. My happiness. Their happiness. Your happiness. Our memories.
My crazy best friend Aleisha gave me another memory today. She called just to sing me the Jeff Foxworthy version of the Twelve Days of Christmas. Haha We used to sing this every year at work when we were stuck working near the holiday. She made me smile and laugh. Definitely needed that again today. The last few days have been “crying” days. That is what I call them. It is where I start to cry in the morning and just cannot stop all day. Tears just periodically flow out of my eyes and down my cheeks. Thinking about random things, or having something happen much like not being able to do the laundry, or the dishes. Yesterday was also one of those days. Thankfully, just like Aleisha, I have another best friend, Ashley who knows how to cheer me up. I text her complaining about my day, and telling her my sorrows…she sends me goofy pictures from work and puts a smile on my face. I am reminded daily, that I am blessed with caring, loving, supporting people all around me. I should let go of my troubles and remember this, tattoo it on my forehead…bang it into my head. There is no reason to be sad and upset when you have this type of support system, when you have some people who will take time out of their days just to put a smile on your face.
I have my reasons to be sad, and have my “crying” days. Even though those reasons are huge, I am sorry but “terminal illness” falls into that category. I have so many things to be thankful for that it actually outweighs the bad in my opinion. Moreover, even if it does not, I say it does. I would rather spend my time happy and cherishing the memories that my family, friends, pets and I make daily…than sitting here feeling sorry for myself.
So, on to making the best out the holiday season. Praying for the people who are going through heartache, and realizing that my life is much better than it could be and I am truly blessed. The people around me are a true blessing. I have a home, loved ones, great friends, an amazing family, and loving pets. I have a huge community of PHriends that continue to remind me that I am one of them and that I do in fact matter. We will PHight this together, and hopefully, some of us if not all…will live to see a cure.
Merry Christmas everyone. Embrace your loved ones this year. Be present for them. It is not about material things, it is about being there and I mean really being there. Let your hearts be filled with love and laugher this season, as well as the peace of Jesus Christ. Always remember the true meaning of the season, I sure have. I would not be here without Him.

A month of firsts!

November started out just like any other month; except for it was PH Awareness month! I set a goal to post either a fact or a picture with information, regarding PH Awareness, every single day of the month. I succeeded! It was actually fun to find a picture that related to PH in some way; whether it be the color of the photo (periwinkle), the words written within, or maybe a photo that another PHer had created and I shared. I enjoyed seeing all my family and friends, repost daily to help spread awareness. phhistory

November was also a month of “firsts”. It was David and I’s first anniversary on November 9. I surprised him with a weekend trip to Noblesville, which is where his sons live. He has not seen his sons for reasons that are a much longer story, and definitely for another time, in 12 almost 13 years. Therefore, as part of the surprise, the boy’s grandmother and I set up for us to spend the weekend visiting, reconnecting, and hopefully rebuilding this long lost relationship. I was worried at first that it would not go as planned, but I should have never worried. Patty and Scotty are great people, and have taken wonderful care of the boys since January of 2014 and for their whole lives if we are being perfectly honest (part of that longer story for another time). We arrived at the house and were greeted with hugs and warm hellos from Patty and Scotty. After a few minutes of chitchatting outside, it was time to go in and see the boys. The look on my husband’s face…was priceless. He was smiling from ear to ear and jittery like a kid on Christmas morning. The excitement just continued to build, until he saw their faces. He was elated to see his children after all these years! They smiled and said hello. That was the greatest reaction. It may seem small, but for us, it was huge! Just to have them smile in our presence and know that this was the start of something wonderful was a blessing to witness. We sat in their living room and talked about our lives, their lives, and what the future may hold. After going out to dinner, it was decided we would come back the following day to be able to spend a little more time with them before our trip home. It turned out better than I had expected and ended with pictures, hugs, swapped cell phone numbers and lots of I love you’s! Since then, we have been texting with the boys and just letting them feel comfortable with our interactions. I can only imagine what it must be like for them to finally get contact with their father after all these years, and to learn that he actually is a good man and wants to be part of their lives…and has wanted to be part of their lives all along. The future holds great things for my husband and his son’s relationship. I am so happy to have been able to give him that first step to reconnecting!family

As I said, it was David and I’s first anniversary, so after we left Noblesville we went to dinner in Indy at Fogo de Chao, which is a Brazilian steakhouse. It was wonderful and truly a neat experience. These men in almost what looks like pirate outfits, run around with swords with meat on them. If you have your card flipped over to green, they give you the cut of the meat you want of whatever they have on their sword, like prime rib for example. If you turn your card over to red, that means you are fine with what you have now and they pass you by. All the time though, there are other servers who are checking your drinks, and the side dishes that you share with whomever you are sitting with. It was cool, however, I totally felt out of my element since I had no clue what was going on at first. We laughed and enjoyed checking out the place and experiencing all that they had to offer. At the end of our meal, they brought us a piece of Key Lime Pie with “Happy Anniversary” written on the plate. It was a night to remember, for sure. I am so grateful to have actually made it to our first anniversary, that the night was truly one that touched my heart, but was bittersweet as well…I can’t help but have the fear I may not see our second, but I will keep PHighting, and hopefully we make it to 50! For my husband; thank you for always being there for me, for being my rock, my shoulder to cry on, my sanity when my brain is being crazy, my clarity when I need it, my strength when I have none, and for loving me – with everything that you are. I love you more than I can express. You have given me life, happiness and love.1stanniversary

Three days after our anniversary was another “first”. My one-year diagnosis anniversary. 11/12/13 was the day I was officially diagnosed and told that I had a terminal illness of IPAH. I was devastated at the time, and gave David a “get out of jail free” card, but he would not take it. This year has been difficult to say the least, and hitting that one-year marker….well it, just as everything else is bittersweet. Will I see 2 years? 5 years? Who knows? What I do know is that we continue to PHight, and will do so until my last breath. I spent my one-year diagnosis anniversary at the doctor. Which was somewhat ironic. It was just a follow up appointment to see where I was with my Remodulin dosing, and how I was reacting to titrating up as I had been doing for several weeks prior. I had been to the doctor back in October and was put back on oxygen and told I had to titrate my Remodulin up to 40ng over the course of the next month. Therefore, twice a week I upped my dosage 2ng. I paid for that “up”, every single time. The side effects of dosing up can be horrendous, and they were. I have spent the last month or so, either in bed or sitting on the couch in pain. My legs and feet feel like concrete, and have a tingling sensation. Walking is a task, as is anything that I try to do. I PHight through it every day and try to get things done around the house, but it does and has gotten the best of me the majority of the time. I deal with a massive headache that causes my vision to be blurry, my thought process is slurred, and I just do not feel good. My chest pains have increased in intensity and frequency, and at times are almost intolerable. But again, I PHight. I may just sit on the couch all day, but at least I am up and interacting with my family. I try anyways. A need for sleep, due to exhaustion, always seems to get the better of me and I end up in bed for several hours. The hope is that titrating my Remodulin dose up, will eventually get me back to where I was when I was released from ICU. Off of oxygen and feeling as if I can climb mountains. My doctor is not sure what happened, or what caused me to slide backwards, but he is committed to figuring it out and helping me as best he can. In his own words, I “piss him off” because I defy what he knows about my condition. Nothing with me is normal, and I truly am one in a million. I told him I could not possibly be anything else, or I would not be me! He just laughed and walked out of the room. I managed to complete my 6MW (6 minute walk), but I had to be on oxygen the whole time. I was hoping that titrating up would get me off it, but I do not think I am there yet. I still get SOB (short of breath) with the smallest of tasks. I am up to 40ng, but I know they are going to have me go higher when I go back on the 10th of this month for my follow up. Whatever it takes to prolong my life I am willing to do, it just sucks that the side effects leave me almost incapacitated. If this med increase does not work, my next step is to be put on the transplant list. However, right now I am not eligible. I need to get my weight down, which I had done before diagnosis sent it skyrocketing back up. Now, it is a fight to get it off when I can barely walk to the bathroom without feeling as if I am going to pass out. Not sure how I am going to do it, but I have to. It is all I have left to hang on to if the meds do not work. It is hard to lose weight when all you can do is sit on the couch and do small tasks around the house. I do some small workouts that my body can handle, but it is still not enough. It is a double-edged sword. I will get there though. I am scared, but I have a great support system and great doctors.purplezebra

I was not sure I was going to make this public or not, however, I think it best to do so. I was laying down for a nap one day a few weeks ago, and I was praying, as I always do. You know that point where you are almost asleep but still somewhat awake. Well, I was there, and all of a sudden I heard in my head a kind voice speaking to me….”You will die soon”. It snapped me awake and scared me to death. Soon? What is soon? How soon is soon? WHAT?! I truly feel like I was being spoken to, but at the same time felt a bit crazy. I decided to talk to someone from our church about it, and she said I was not crazy, and that I should make sure I am comfortable with my eternity. Which, I am. I know I am going to Heaven, and I honestly am not scared for that. I will see my dad again; I will see all my loved ones again. I will be in the loving arms of our God. Nevertheless, what I leave here is what scares me. What about my husband, my mom, my family, my friends, my babies?  I can feel my body wearing down. My heart is tired, overworked and in pain. I am not giving up, and I refuse to let this disease take me down without a PHight! Wipe your tears and keeping praying for me, and keep on reading…

Happier thoughts!

Another first this month was Roxy’s first birthday! She turned the big ONE on November 17. We are so blessed to have found her and been able to adopt her. She has been a wonderful addition to our family, and she and Phoebe have bonded as we had hoped. They play constantly, sleep next to each other, check on one another and wreak havoc all around the house. It is wonderful to see all of Phoebes pent up puppy energy finally released, since she has a playmate – a sister. Happy first birthday to our sweet baby Roxy Sue! We will be having a “Pup Party” to celebrate, however, we are waiting until Phoebes first birthday, which is December 6, and then we will do a double “Happy First Birthday” party! I already bought decorations for it, so stay tuned!roxybday

Ending November having Thanksgiving with my family was wonderful. Cousin Paula is here (for 3 weeks!!!) and Aunt Mary was here for a few days to celebrate. We cooked, ate, and laughed together. I thought a lot that day of what I am thankful for. I cannot even begin to list everything, because that is just it. I am so thankful for EVERYTHING and EVERYBODY in my life. My thought process on things have changed in the last year. What used to be important is just trivial stuff now, the small piddly things I used to worry about, are no longer. I cherish the time, the smiles, and the love of my family and friends. That is what is important to me now. I do not care about material things; I do not care about the latest shows on TV, keeping up appearances, or even about the weather outside. Those things used to run my days. Now, I base my days on how much time I get with the people and things I love in my life. I am thankful for that.tdayrp

One day at a time!

Color the World Periwinkle!

November is PH Awareness month, so what better to do than Color the World Periwinkle that day! I say not only that day, but all month long!! Rock the periwinkle (purples) all month long to show your support for Pulmonary Hypertension and Pulmonary Arterial Hypertension, as well as our desperate need for a cure!

colortheworld1

I for one have some of the most amazing supporters a patient could ask for. I have friends who are getting manicures (with me!) with periwinkle as the color choice, maybe a ribbon or zebra print added, to wear all month long. Others who ordered t-shirts, friends and family who are supporting me and showing others as they venture out into society with their shirts on, what PH is and that we need a cure! My old work, and where my husband currently works, is supporting PH Awareness month, ALL month long in November and are wearing purple ribbons along with sending out awareness information via email throughout the whole company (Atterbury Job Corps Center)! I can’t tell you how blessed I feel, that even after almost a year of not working there anymore – they still support and believe in me! I am getting pictures everyday from former co-workers who are wearing their periwinkle lapel pins! I LOVE it! Thank you to one of my best friends Aleisha, for making that happen. Another friend is hosting a Jamberry online party to raise proceeds for PHA and another is using her Beachbody Coach business to raise awareness and proceeds as well! I am so thankful to have these people in my life!! It makes going through this medicine transition that much more bearable, because I know I have all of them at my side.

Everyone who helps out, please post everything you do on your social networking sites and use the hashtag, #PHAware when posting. If you want to send me things and I will post on your behalf, please feel free!

Awareness is spreading and it is because of people like YOU!