Hard Days

Starting a post is hard when I have not written for a bit. I feel like saying I'm sorry for not writing more often, but the past week or so have been a blur for me in many ways. I have been dealing with more pain and more panic attacks. Just when it seemed that things were getting better, I would experience something else. A thought or a conversation that would trigger an attack and my inability to breathe.

After that original attack on Friday, things seemed more stable, though the presence of small attacks were there all day. Throughout the week things got much better, and then finally something set off another pain attack and another panic attack would set me back all those days I moved forward. These days have really worn on me. I can't say that going through this has been expected in any way by either my family or by myself. Along with the on and off bleeding, we have been in real disbelief with which how much we have had to cope. The last time I had severe bleeding was 2 nights ago, and it was much more than usual. This time my haemoglobin was effected the doctor said, and the effort of coughing up the blood was really hard on me. I was choking on the blood and had to leave my Bi-Pap in between the cough ups, to help me get through it all. By the time I had cleared all the blood, I was so tired that they gave me something for the terrible pain I had. I slept for most of the day.

Due to the blood I was unable to get my Tobra and Pulmazyme as they are irritants and would likely make me bleed from my lungs again. This was really hard for me to do. Those drugs allow me to breathe somewhat! When the blood totally stopped on Wednesday, my friend Melissa was helping out that night by staying the night at the hospital with me. She's amazing, Taking the time out of her life and spending midnight to 6am by my side. The doctors really want this as I am often sedated and need more help. Anyhow, Melissa arrived with her boyfriend (he just wanted to pop in and say hi to me), and at that moment, for no reason I began to once again cough up tons of blood. Her poor boyfriend, who's never been around CF before got quite the show!! But he hugged me and was amazing. He's a good friend of ours. That was Wednesday, with a few hurdles that night. Thursday, no blood, lots of pain killers due to lots of pain. Friday, more blood, controlled pain through long acting and short acting pain killers. Ups and downs. Finally I had had enough and took an Activan to sleep. I needed a break! So I slept 16 hours.

Friday evening before everyone went home, my doctor stopped by my room before she went home to speak to me. She was visibly upset when she spoke to me. I was sleeping when she came in. Martin was with me, I was on my Bi-Pap. I opened my eyes. She told me that it was going to get better, that we were just going to have to get past this. Whatever this was. These attacks were just panic attacks, and were not a reflection of what my body was doing right now. The fact was I had just gained weight due to the Lipids. My white count was down, and the bleeding seems to be over with. Panic attacks are common in this situation she said, so close being able to breathe, but not being able to. But we will get through it together she said and I believe her. I do. As she walked out the door she turned filled with emotion said "I will not let anything happen to you" Dr. S is another one of my favourite people here.

Since I have been very immobile to do anything in my condition, I have been able to do a lot of exercises in bed as well as a new physio therapy. I will ask what exactly it's called when I see my physiotherapist tomorrow. It focuses mostly on massage and relaxation to allow me to move as many secretions as possible. It has really been working, especially since E came in on her weekend on her days off. I really do have an amazing team that will do so much to help me get stronger and past these tough moments. I just adore E, she is unbelievable and has done so much for me during the past few weeks. When I have one of these attacks E is one of the people that can help me breathe.

The weekend was overall better than the week. Last night my mom stayed with me. It went pretty well. I am a lot stronger and feeling like perhaps this could be the end of the attacks. We certainy hope so. They have taken a toll in my treatments and even in my overall CF care. This is why I really want to move forward from this. It has been just so hard on us. The stress has been too much. We are now hoping that things stay more stable, and of course that this call comes.

Below is a really really cute Scarlett video! I thought it would put a smile on your face....since it really put a smile on my face!!