January 17th, 2012

(no subject)

This is a very private entry. I'm not offering up for viewing to everyone for that very reason. I just feel that I have to write, I find it cathartic and very therapeutic. I haven't written for so long because I've had a few life changing events happen. I know that many of my cysters and fibros will understand most of what has happened to me and the emotions that come with it.

On December 2nd, I had my pre-transplant listing care conference. This is where we discuss what needs to be done in order for me to be listed for transplant. There were a lot of criteria that I didn't quite meet yet, which was what we had intended to address at the meeting.

Mark and I got there for the 10:30a meeting. We met with the team and also called my aunt Trisha in North Carolina so that she could be in on the planning. She has agreed to be a post-op caregiver for me for six weeks following transplant. We attempted to call my mother but were unable to get through.

My familial inconsistency is a point of contention with me. My immediate family is very small and VERY disjointed. I have three older siblings. My oldest brother no longer speaks to my mother or my sister. My mother has disowned my sister and no longer speaks to her. My other brother and his wife are usually playing the role of Switzerland and trying to remain neutral in any family situations involving everyone.

I have never felt any form of REAL support from them since I moved to Minneapolis in 2000. I can count on ONE HAND the amount of times ANY of my family had come to visit me during the TEN YEARS I lived there. I lived 240 miles away (about a four hour drive) from them, yet not once did anyone come to visit me while I was in the hospital, even when I was detrimentally ill. The team at the U of M NEVER saw not ONE family member and believed me to truly be an orphan. I even offered to pay for gas for them to come see me and even that couldn't lure them to see me. They have even been in the same city for some other reason and not even bothered to call me.

So, my feelings of being alone in this battle are not unwarranted. This is why it came as such a shock to me when my Aunt stepped up and offered to help me, and when my brother and his wife tell me that they are planning to move here in order to help me as well. The latter of which I will believe when I see, because talk is only talk until action is taken. I can't afford to rest my laurels on broken promises.

At the meeting, we determined what needed to be done and the financial aspects of it as well. We are going to focus on fundraising when the time comes, as well as donations from family members and friends.

My living situation has been precarious since I moved here last December, but that is about to change, mostly in part to my wonderful boyfriend Mark. He has decided to step up and be my "primary", offering to move in with me and get a stable living arrangement in order to meet that requirement. Not to mention that we are in love and actually WANT to live with each other. :-) We are set to move into our own place in March, so we will be shopping around for places in February.

After the meeting, we went to CF support group. Mark had never been to Stanford with me and I wanted him to see what I did when I go there each month to clinic. Group is about an hour long and can vary is size. Some people are there in person, others via telephone or internet.

After group, I had clinic. I had been feeling extremely tired and just generally worn out for a couple weeks, but I didn't feel like I was fighting a lung infection and didn't have increased cough or sputum. I did PFTs and my numbers weren't as horrible as they had been for previous hospitalizations, they were at 34%. Dr. Mohabir was seeing me that day, and I had had a feeling that I would be admitted, so I came prepared with suitcase in tow.

There is usually a battery of tests that are done upon admitting, just to see where your health is at and to determine which medications will be beneficial and set up a plan of discourse. For females with my condition, it is standard practice to do a pregnancy test via urinalysis. This is because we generally have to undergo some form of radiation, usually in the form of chest x-rays.

I was admitted on a Friday. The next afternoon, I had been lapsing in and out of sleep when Dr. Mohabir and my nurse practitioner, Cammy, came in. He was very serious and stern when he said to me "Eyva, I need you to wake up and sit up, I need you to be very conscious to hear what I have to say to you." This, of course, is generally NOT a good precursor.

I sat up and rubbed the sleep out of my eyes, and stared him directly in the face. He tells me "Eyva, your pregnancy test came back positive."

I couldn't speak.

What they told me was that it may be a false positive, and that we would do a blood test and re-test the urine, just to be absolutely positive. They were stopping all the IV antibiotics that I was getting and Dr. Paul knew that I was the type to ask questions and want to know why, which is why he came to my room personally to tell me. Unfortunately, I had had an unshielded chest x-ray the night before.

I was confused. I was overjoyed. Excited. Worried. Scared shitless. Overwhelmingly sad. I already knew what was going to happen. What had to happen.

The OB/GYN consult came the next day and did an Ultrasound to determine how far along I was. We had initially thought that I was about 4 weeks. Turns out that I was 7 weeks and one day. That time frame put conception at the day before I was admitted to the hospital the previous hospital stay. I had no idea that I was pregnant because I had gotten my period as I normally would. This is not completely unheard of.

So, I had had TWO unshielded x-rays and an entire 15-day course of extremely toxic antibiotics all while unknowingly being pregnant.

Morning sickness set in shortly after finding out the news. They said that six to eight weeks is pretty standard for that to start. I was pretty scared when I called to tell Mark. I was nervous about what his reaction would be, scared that he would get mad and blame me for this, or accuse me of intentionally doing this.

I had gone my entire life believing that it was nearly impossible for me to get pregnant. This is what I had been told and this is what I honestly believed. Both Mark and I thought this was an impossibility. Turns out that it was more improbable than impossible.

Mark's reaction was one of shock, just as mine was, and he said the same thing that I had; "I thought you couldn't GET pregnant?!?!" I told him that I honestly thought I couldn't. He didn't blame me or get mad, more just worried and shocked. He proceeded to take the rest of the month off from work in order to stay with me at the hospital and be there for me when I needed him. He came and stayed at Stanford on a cot in my room for the rest of the time I was there.

We knew what had to be done. My chances of surviving and carrying the baby to full term were pretty much nil. My lung function is in the mid 30's at best. There are cf women that have had more than twice the function that I have that haven't fared well during pregnancy and childbirth. The small amount of statistics that we had to review basically told us that those women (who were pretty much healthy compared to me) generally declined rapidly after giving birth to the point of needing a transplant or to the point of dying.

It just wasn't fair. The ONE gift I wanted most in my life and always thought was out of my reach, was finally given to me and I couldn't keep her.

One week after finding out, I took the pills. Mark was with me when I did it. It's actually a series of pills. You take the first pill one day, and then you take four pills all at once the following day. The first pill blocks progesterone and makes your body stop recognizing the fetus. This pill is painless and you don't feel anything. The next pills are horrific. I was so overcome with grief and in so much pain from the cramping (8 hours straight of horrendous cramps) that I was crying uncontrollably and delirious. I honestly scared Mark.

I don't really know how to describe the emotions that I felt. I felt and still feel like the most horrible person in the world for what I did. I honestly tried to tell myself that I could have this baby and live through it. I had a lot of questions as to WHY god would choose to give me a baby NOW in my life, when there was no possible way that I could keep her?

So many feelings of why this happened to me now. I have been sexually active for 17 years, had three serious relationships where there were numerous opportunities for me to get pregnant, but the Fates chose THIS year, THIS time in my life to give me a child. WHY??? My body was much more healthier ten years ago when it could have withstood a pregnancy.

I had never in my life hated my CF more than I had at that moment. My disease has and is stripping me of EVERYTHING. All the abilities that I lose because of Cf and everything that goes with it. I never in my life wanted so much to just be normal than I had at that time.

About a week later, I remembered a dream that I had had about 12 years ago, when I was being worked up for transplant. I dreamed that I was sleeping on a sofa in a room that looked like a home office/library. There was dark wood paneling on the walls and the door was open to the hallway. A little girl of about 8-10 years old with dark hair and wearing a dress walked in and for some reason, I started to cry. She looked at me so softly and said "No, no, shhhh. It's okay, I had to die. I had to die for you."

At the time, I thought that my mind was conceiving what my lung donor would do for me. That dream just suddenly came to me a few days after the termination (I don't choose to call it an abortion) and I realized who she was. The fact that my little girl came to me not once, but TWICE in my life is something that gives me hope that I will see her again.

I cry still. Grief hits me at random moments, sometimes completely unprovoked. I apologize to her all the time. I tell her that I am sorry that I couldn't be the momma she needed at this time and I pray that god or the fates will see fit to bring her back to me when the time is right and I CAN be the parent I know she deserves. She didn't deserve to come into this life with a sick or dead mother, possibly having all the complications of hypoxia, toxic medications, low birth weight, malnourishment, deformities, or the numerous other defects that could have been, all due to my stupid disease. Mark didn't deserve to be left to fend for himself and a child with special needs without a mother.

I tried to find comfort during that time by envisioning myself handing her off to my father, who waited with a smile and open arms. I tell myself that he and my Grandmother Adeline are just going to take care of her over there until the time comes when I can bring her back here. I tell myself that I just had to give her back to God for a little while.

I don't think that god just gives you a life for no reason. I try to find meaning in her short existence within me. So far, she has shown me that it IS possible for me to get pregnant. She has given me a reason to fight for more than just myself and an unsure future. She has shown me that not everything has been taken from me and that it IS possible for me to have the future life that I want. That I hoped I could have.

I have never loved or wanted something SO much in my entire life. It was easily the hardest thing I have ever had to do. If I didn't have Mark there with me, I don't know if I could have gone through with it. He has been the voice of reason through it all. His attitude and "live to fight another day" mentality has helped to keep me focused on what we were doing before this happened to us. There is no doubt in my mind that attempting to have this baby would have definitely killed me, and possibly the baby as well.

Mark has made is possible for me to grieve in my own time. He doesn't judge and has nothing but love when I randomly break out into tears or get angry for no reason. He is understanding through it all. The other day, I was having what I call an "episode". He took me to the bedroom and laid down with me and held me while I cried. I told him that I'm so tired of losing things in my life. He just looked at me, hugged me and said "It's okay babe, I'll help you find them." That was the sweetest thing that anyone has ever said to me.

I feel horrible about what I did. I know that my choices were pretty slim, but it doesn't stop me from feeling like a bad person for ending my little child's life. I want so much someday to be a mother, I'm just sad that it couldn't be right now. I have to have faith that the fates will someday see me fit to be a parent when the timing is right. I have to believe that she WILL come back to me.

I am still amazed that this happened. And with Mark. I have felt an odd cosmic push towards him since the day we reconnected. It has seemed like everything happened so perfectly with him, and everything with him just feels "right".

Despite all of my pain and sorrow that I feel right now, I have hope for my future. I feel that the bottom of the barrel isn't too far from my grasp, therefore I can only go up from there.

Much love to you sweetheart, for putting up with this crazy moody girlfriend of yours, and for being the kindest soul. Makes me love you even more.




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