Tuesday, April 28, 2009
When I got there on Friday his pain was better, but still not manageable and his vision was still off. The neurologist decided that he wanted to do an MRI to make sure that there wasn't something else going on. The pain did get better, or at least under control, so when the MRI came back clean around 8 pm, he was discharged. They gave him a mix of medications that seemed to help with the pain AND allowed him to sleep, so that is something that we are going to explore further with the pain folks, since the pain medication that works (demoral) does not let him sleep. Speaking of pain, because of all of the stuff that happened, he hasn't been able to start the new pain regimine, so no update on that.
The weekend was pretty uneventful. We did some shopping and hung out with friends. I got a great print for our bedroom that I LOVE. I will have to take a picture and post it. On Sunday evening we decided to walk over to a local restaurant/bar for dinner and Gess started to cough up blood during that walk. Ugh. About a 1/4 cup.
On Monday we had a clinic appointment. We really like our new doctor. He is SO much better than the one we saw before. Gess didn't do PFTs because of the bleeding. The biggest item of discussion was obviously the bleeding. What the doctor wants to do is file for a consult with the intervental radiologist to see about scheduling an embolization. The IR team has been very hesitant to have anything to do with Gess is the past and the one embloziation that they did do did not go well, so I am anticipating some resistance. But I think that this is the right first step in getting this issue address. The doctor has already told us that he will send Gess to another hospital if he needs to, so I am hopeful that things will work out. I don't want Gess to have another embolization, but as far as I can tell, there isn't another way to stop this bleeding. He bled again last night, so they are continuing.
We also got back the results of the sleep test and Gess has mild sleep apnea with some desaturation at night, so the sleep team is recommending a CPAP. I have a CPAP (which I never use), so I was joking with Gess that would could have matching devices. I guess I'd better get mine out and start using it before he goes to get his :)
Gess is having a rough day today--he is understandably very frustrated with what is going on. I am too and I am also scared about how much this is affecting my work. It is a struggle to deal with these issues and work full time, etc. But, I am trying to stay optimistic about it. We'll see.
Thanks for all of the support during these crazy times!!! I really do appreciate it all!!
Friday, April 24, 2009
Thursday, April 23, 2009
"i am sorry i wasnt asking for you to give me money i asking for you to help me and my kids and itts not like i wasnt going to pay you back i am right now without my own house without anything except what i was able to bring to moms and on the verge of losing all my other stuff that is imporant to me and the things that are not that important but hard to replace when you are a piece of shit like i am i was only trying to help me and my kids out any way that i can because like you and i both know they should have better then what i can give them and i have tried to do better for them by leaving the house that i did have i dont want to go back but i might end up having to again i am sorry that i even ask i wont anymore della"
Seriously??? I mean, am a wrong for saying no? I understand that she is in a rough spot, but is my money really going to help? She has borrowed a lot of money in the past and paid some back, but not much. She is always asking people for help and she is constantly emailing me and complaining about her life, etc. She says that it helps to vent, but it really stresses me out. She is 30 years old, and can't do anything to take care of herself, let alone her 3 kids. I have done everything that I can think of to help, even sitting down with her and showing her how to set goals and make a plan to meet them, etc. I really just don't know what else to do. It literally makes me sick to my stomach.
Are these kids going to get hurt because I don't give her money? It would be easier if I didn't have any money, because I just flat couldn't do it. We are not rich or anything (and God knows CF is frickin expensive!), but we do live a comfortable life. And you know, if my best friend called me right now and asked to borrow money, I wouldn't even think twice before getting out my check book. But that is because I know that it would definitely be an emergency and that she would use it and help herself and pay me back asap. With my sister, it is not like that at all. I mean, I have probably given her over a thousand dollars and what difference has that made? But, at the same time, how can I wear a $800 necklace, while my nieces and nephews are in this situation??
Of course, the timing of this is just great! I promise I am going to have a happy post at some point...I don't want to seem like a whiner!
migraine but can't get the pain to a place where he feels comfortable
going home. Knowing how much he tries to avoid this place, the pain
must be excruciating. He has seemed to get some sleep with the help of
a cocktail they came up with for him, so that's good. As for me, I
missed another day of work, but fortunately grabbed a novel on my way
out and finished that.
be a good day. Of course I was wrong.
I have been really tired lately so I didn't set my alarm and figured I
would get to work when I woke up. So, I woke up around 7 am. Light was
shining in the window and Beauty was snuggled up next to me. Pretty
nice :) I can be to work by 9 if I get up at 8, so I decided to just
lay there and collect my thoughts, etc. Awhile later Gess called up to
say get up and let's get some breakfast. Sounded like a good plan to
me so I got up and got ready.
I was putting on my makeup when Gess called out for me. He was dizzy
and couldn't see right. Fast forward to now...and we are sitting in
the ER. The docs are sure it is a migraine but he is in so much pain
that he asked to be admitted. The docs think that home will be better
than hospital so they would prefer not to admit. They gave him some
medication and he slept a bit but he is awake and in lots of pain now,
so I don't know what will happen.
Wednesday, April 22, 2009
I am trying to be as rational and calm about this as I can, but honestly, it scares the crap out of me and frustrates me to. I am tired of hospitals and doctors and home health people. I feel smothered by them and all I want is a little space to breath. Ironic that I just said that, considering it is my husband's lungs that I am talking about anyway.
There are days like this when I just wish that we could have a few "normal" days. Days when I didn't think about CF a hundred times and when we could just be a regular married couple. Not one with death looming in the shadows. And then I feel selfish, because my husband is the one that has to feel this disease taking over his body, not me. But when I think about it, it does take over, just in another way. It doesn't manifest itself in thick mucus building up in my lungs, but instead in many other ways. I have been told by more medical professionals that I can count that I am too stressed. I get that. But how do I fix that? This disease is taking me over too. Not in the same way. But it is there. I am scattered and frazzled. Jumpy. Afraid that at any moment I am going to hear a thud and my whole world is going to come crashing down. I walk on the edge, wondering where I belong and how I will be able to make it. And then wonder what "it" is.
For now, there are no answers. Only little steps to get through the day. A cup of coffee. Lunch with some old co-workers. Work. The gym. Email. Homework. I will push thoughts of more out of my mind and focus on the next little task. Keep the focus as long as I can. Try not to long for the break that I know I need, but doubt will ever materialize. But, keep a tiny sliver of hope, because I need it.
Sunday, April 19, 2009
Of course, it still took a couple more hours to get him freed, but we were eventually able to get him home. Honestly as I type this i can't remember what we did on Friday night--I guess that is how tired I am!!
We had a birthday party planned for Gess and he said that he wanted to go ahead with the party, so we did some work for that. We had a very nice breakfast at the great local cafe called A Caprice Kitchen. After that we went home and got ready for the party. Gess knew that we were having a party, but didn't know that we were making it a "theme" party. We decided to have a cowboy party. I ordered a ton of cowboy hats and bandannas and other silly stuff. It was a good time :) i should have some pictures to post soon. We just hung out at home after everyone left.
Today we got up and went to the Skagit Valley Tulip Festival. That involved about an hour drive north to some tulip fields and we walked around. It was okay, too many kids and people, but the flowers were beautiful, and it was a gorgeous NW day. We had lunch, made a quick stop at the lululemon outlet store and then came home. I was completely exhausted when we got home so I decided to take a nap. Apparently I slept for 3 hours before Gess came in and wake me up. I was still tired! I did get up though and we hung out and watched a movie.
Gess decided to go to bed before 9:00 pm and I am ready to go to bed as well.
It has been a good visit with Gess's dad, but it has also been tiring. He is a great guy, but he is always moving, moving, moving. He wants to buy stuff for us all of the time too. He bought a new grill and then spent the morning putting it together. I think that Gess still have some "issues" with his dad. He had a rough relationship before...parents divorced early on and his dad wasn't around. Gess has always been trying to impress his dad and the two of them are so competitive. Over the past several years it has gotten better and we really have a great time with him. But, I can tell that there is still something there, Gess wants to impress his dad and wants his dad's approval. I know that his dad is proud of him and loves him, but he is probably not the best at showing it. So...who knows...
Gess's dad leaves in the morning and Gess and I will try to get back on top of everything. Last week was a wash in a lot of ways because of the hospital. So, it will be busy I am sure. I swear that helping Gess and dealing with these issues when they come up is a full time job! Makes me think about my career choice and how I am going to be able to juggle everything when things get worse with Gess's health. Honestly I am not sure that I am going to be able to do it. Also, it really makes me sad because I know that this means that we won't have children. But even typing that makes me cry and feel sick to my stomach. It makes me feel like a complete failure because I can't do everything...even the stuff that I want to do more than anything.
Thursday, April 16, 2009
My father-in-law arrived today for a visit, which is nice. He will hang out with Gess some so that I can take a break, which will be nice. Not that I have been here 24/7 or anything. It is just nice to know that someone is there and that someone is not me all the time :)
Wednesday, April 15, 2009
So, I told my sister that she needs to get out of the house right now--she has been talking about it for awhile anyway, but can't find a place to go. After hearing about the niece yesterday I decided that I had to report it. My sister is not going to do anything. So...I called CPS. It was not a good experience. The guy on the phone was a tool. He even tried to dissuade me from reporting by telling me that my sister might be a "suspect" since she is letting it happen. I told him that I didn't care--the kids are in danger. Geez. As far as I know, CPS hasn't done anything, and honestly that doesn't surprise me. Even though I am 100% sure that my nieces and nephew would be better off with complete strangers than they are with my sister right now, it was still a very difficult call to make. I am not sure what it was about it, but it was hard.
Today my sister sent me another email with the same sort of complaints...no place has emergency openings, she has no money for a storage unit--that's right, a STORAGE UNIT! I emailed her and said all of that is just stuff...take your kids and get out of there. All while I am sitting in the ICU watching my husband.
On the way home from the hospital I started to doubt my stance. My sister has hinted (very strongly) that she wants us to give her money--because she needs someone to pay $300 a month to help supplement the rent, etc. I have refused in my mind to even go there. Because honestly I don't believe that all of the money in the world would get her to make the move. I don't think that it is lack of $ that is stopping her...she just isn't ready and willing to make the necessary changes. But on the way home I started to doubt this...what if I am wrong? What if it is just a little money that would make the difference? I know that it isn't...but....ugggghhhhh. I can't believe how much guilt and stress I have over this situation. ***Sigh***
about discharging him tomorrow. I am not sure how I feel about this.
I mean, I am always happy when he gets to come home, but at the same
time, I am afraid that the bleeding will start again and we will end
up back here.
Tuesday, April 14, 2009
Thankfully our good friend Ta was available to sit with him for awhile
while I wrapped up some things at work. 7 hours later we are still
sitting here. The powers that be have decided to put him in the ICU so
that they can monitor him more closely. They are also alerting the
interventional radiologists in case they need to go in and stop the
bleeding overnight. Hopefully that won't happen and all of the doctors
can pow-wow in the morning.
I am exhausted but scared to go home. The bleeds haven't been huge but
cumulatively it has been about 3 cups. The last time he had a huge
bleed and surgery he ended up on a vent.
The weird thing about this is that he has been feeling better than he
has in months and now this. I don't know what is going on and that
makes it even more scary.
Monday, April 13, 2009
On a happier note, we are having a party for Gess on Sat. It should be loads of fun--I'll post the details and pictures after we have it :)
Friday, April 10, 2009
We did go to the pain clinic today and had a good visit. The pain had increased pretty significantly in both frequency and intensity, which is obviously a concern to everyone. The demoral doesn't work well for this really. So, now we are on the hunt for a better solution. The doctor wants him to try Pregabalin. He tried it once before and it made him "loopy" so he is not optimistic about this, but I am going to press him. We need to find something that works that he can tolerate. He left the clinic in a pretty foul mood, which I can understand. I know that in my mind, these changes are a progression of CF and are an idea of what is to come...which of course is not something we want to think about.
Up next, sleep study tomorrow night (which means I get a free Saturday night and the entire bed to myself!! :) ). Then gastric emptying study next week.
Oh, he is also participating in some research study and gets to use a portable spirometer. Pretty cool!