What to make of this month that's brought so many changes on? Diabetes, oxygen, full time glasses, the deaths of friends. Welcome to my life. It seems that I get a raging shit storm for a little while, then a whole lot of nothing. The last shit storm was at the end of 2007 with mono, appendicitis, and my first IVs. I suppose I should feel blessed that I made it more than a year without having another one.
For the most part I have taken all this in stride. The medical stuff was going to happen sooner or later. CF and family history make diabetes inevitable. And as you all know I have been fighting for the O2 for over a year. I look forward to some decent sleep.
Last night was my first night with the O2. Its too early to tell how its going to go. But I did sleep better than usual last night. We'll see if it keeps up. I do feel more awake today, and haven't had to take half a bottle of Aleve to keep my head from exploding and my back from breaking in half from my agonized writhing. So I'm hopeful.
Its the triple dose of death lately that has me really looking forward to the end of this month. Too bad D is in Vegas on training. Stupid military. What am I going to get him for his birthday anyway?
Saturday, February 28, 2009
Wednesday, February 25, 2009
Its about damn time!
Its a miracle! I am getting set up with nocturnal oxygen! There was an email in my inbox today from one of the doctor's I have been for half a century (seems like that long anyway) that he is having the RT set it up.
It only took a year of asking, begging, yelling, threatening, crying, screaming, and finaly swearing a blood oath that I would never set foot in that place again. I am still going to be seen at Denver, that appointment is on May 6th, and plan on moving. But at least now I can have my O2 and maybe get some decent sleep!
It only took a year of asking, begging, yelling, threatening, crying, screaming, and finaly swearing a blood oath that I would never set foot in that place again. I am still going to be seen at Denver, that appointment is on May 6th, and plan on moving. But at least now I can have my O2 and maybe get some decent sleep!
Sunday, February 15, 2009
Frustration
How do I describe my mood today but frustrated? I am so sick of going into clinic every few months and begging for a test or for oxygen and getting shot down more often than not. And who do I complain to when the person who is the problem is the head of the department? What am I supposed to do? If I never went back there I'd be getting the exact same level of care that I'm getting now....which is to say NONE....and I wouldn't have to waist my time and sanity on it.
Tuesday, February 10, 2009
Three
Well, I know I haven't blogged in a while, but I've been overwhelmed lately. So why is this blog called Three? Well, as they say things come in threes and I have a perfect example.
2 weeks ago today D's sister passed away. She had a short battle with cancer. D was able to go home and be with his family. He seems to be doing ok with it, although he is on valium to help relax because obviously he is under a huge amount of stress.
I thought this next example was my number 2 but I was wrong. My best friend's mom was diagnosed with terminal lung and liver cancer the same week that D's sister passed. Even though they gave her about a year I thought that the imending death was number 2. I'll get back to this.
Last week my wonderful Jenn passed away. She was a part of the CF family. I took this pretty hard, I was pretty close to her. Its hard to imagine that I will never see her in chat again. She was very sipportive, funny, and had a lot of wisdom about life in general and CF especially. I miss her so much. Breathe easy my friend.
Last night my friend's mom, the one mentioned above, went into resperatory failure and passed away on the way to the hospital. In a way this was for the best, no long drawn out suffering from the cancer. Of course my friend is taking this pretty hard, he was not prepared for this since he thought he had about a year with her still.
2 weeks ago today D's sister passed away. She had a short battle with cancer. D was able to go home and be with his family. He seems to be doing ok with it, although he is on valium to help relax because obviously he is under a huge amount of stress.
I thought this next example was my number 2 but I was wrong. My best friend's mom was diagnosed with terminal lung and liver cancer the same week that D's sister passed. Even though they gave her about a year I thought that the imending death was number 2. I'll get back to this.
Last week my wonderful Jenn passed away. She was a part of the CF family. I took this pretty hard, I was pretty close to her. Its hard to imagine that I will never see her in chat again. She was very sipportive, funny, and had a lot of wisdom about life in general and CF especially. I miss her so much. Breathe easy my friend.
Last night my friend's mom, the one mentioned above, went into resperatory failure and passed away on the way to the hospital. In a way this was for the best, no long drawn out suffering from the cancer. Of course my friend is taking this pretty hard, he was not prepared for this since he thought he had about a year with her still.
Saturday, January 31, 2009
My thoughts this week.
A lot has happened this week. D got called home to NYC on Monday night. Tuesday morning I got a text message at 3:45 saying that his sister had passes away. My heart broke for him at that moment. I don't have a sister so will never the unique pain of losing one, but I have lost people that I love and I know that pain very well. Every death we incounter hits us differently. Upon hearing the news of my great grandfather's death from ALS (aka Lou Gerhig's disease) I burst into tears instantly. Even knowing that someone's death is near it doesn't make it hurt less. But I didn't have the same reaction about my grandfather's death. But I wasn't as close to him.
Not too many people know this, but I was fairly young when I fell in love for the first time. And it may seem strange that I never met my first love in person. We met on the internet, we exchanged letters and emails for years. We planned on being together one day. Then he got badly burned at work one day and distanced himself from me. Who was I to push the issue? He had a son to think about, didn't want to be a burden to me. Years later I tracked him down. I was having a rough time and just wanted to talk to someone who I knew loved me for me. We started talking again, started making plans to see each other. It was like those years of "seperation" had never happened. Then he was diagnosed with lung cancer. 3 months later he was gone. When I heard the news for an instant my world fell apart. How could that happen? How could my love be gone?
I gave up on finding anyone else like him. How could I ever love someone the way I loved him? That was a lot of the reason I got married. I figured why not? I was never going to feel that passion again so I might as well settle for this man. I didn't love him that way but I did care about him. He was a cancer survivor, I went through that hell with him and we made it through. Then he tried to commit suicide. I realized he didn't really care about me the way I thought he did. I realized that I had married him for the wrong reasons and the being single forever was better than that, I was better than that. So I asked for a divorce. 3 weeks later I met D.
I still wasn't ever expecting for fall in love. I just wanted to have fun, go on some dates. I figured that sooner or later I would get bored, I always did, and that would be that. But D and I had chemistry right from the start. And it was more than physical attraction, although he is incredibly handsome! We like the same movies, music, foods. Sparks flew when we kissed the first time. He had to go away on business for 2 weeks right after our second date and while he was gone he said he missed me. No man would say that after 2 dates if he didn't mean it. When he got back from that trip he had to tell me that he was being deployed in a few weeks. He would be gone for 6 months. I could tell by the tone of his voice that it hurt him to have to tell me that. Or maybe he was scared that I wouldn't want to see him anymore. But I did. I never wanted to see anyone else. I knew that night that I had already fallen in love with him.
Those six months seemed more like six years. But when he got home it felt like he had never left. The chemistry was still there. We still made each feel amazing. And another painful situation has been forced on us. I don't know for sure what he'll be like when he gets home from laying his sister rest. I just hope that he will lean on me when he needs to, and that he will know when he needs to. I know I can be strong for him if that's what he needs. I know it because I love him with all my heart.
Part of me is scared that I will lose him. I lost a love once and I never want to experience that heart break again. I know I can do my part, but will he be able to accept my support? I don't know. Whatever happens, I got to be loved and be in love twice in my life. Some people never get that chance even once. I will always appreciate what I have been given. Part of me will always miss Warren, you don't forget your first love. But if D will take it, he can have the rest of me.
Not too many people know this, but I was fairly young when I fell in love for the first time. And it may seem strange that I never met my first love in person. We met on the internet, we exchanged letters and emails for years. We planned on being together one day. Then he got badly burned at work one day and distanced himself from me. Who was I to push the issue? He had a son to think about, didn't want to be a burden to me. Years later I tracked him down. I was having a rough time and just wanted to talk to someone who I knew loved me for me. We started talking again, started making plans to see each other. It was like those years of "seperation" had never happened. Then he was diagnosed with lung cancer. 3 months later he was gone. When I heard the news for an instant my world fell apart. How could that happen? How could my love be gone?
I gave up on finding anyone else like him. How could I ever love someone the way I loved him? That was a lot of the reason I got married. I figured why not? I was never going to feel that passion again so I might as well settle for this man. I didn't love him that way but I did care about him. He was a cancer survivor, I went through that hell with him and we made it through. Then he tried to commit suicide. I realized he didn't really care about me the way I thought he did. I realized that I had married him for the wrong reasons and the being single forever was better than that, I was better than that. So I asked for a divorce. 3 weeks later I met D.
I still wasn't ever expecting for fall in love. I just wanted to have fun, go on some dates. I figured that sooner or later I would get bored, I always did, and that would be that. But D and I had chemistry right from the start. And it was more than physical attraction, although he is incredibly handsome! We like the same movies, music, foods. Sparks flew when we kissed the first time. He had to go away on business for 2 weeks right after our second date and while he was gone he said he missed me. No man would say that after 2 dates if he didn't mean it. When he got back from that trip he had to tell me that he was being deployed in a few weeks. He would be gone for 6 months. I could tell by the tone of his voice that it hurt him to have to tell me that. Or maybe he was scared that I wouldn't want to see him anymore. But I did. I never wanted to see anyone else. I knew that night that I had already fallen in love with him.
Those six months seemed more like six years. But when he got home it felt like he had never left. The chemistry was still there. We still made each feel amazing. And another painful situation has been forced on us. I don't know for sure what he'll be like when he gets home from laying his sister rest. I just hope that he will lean on me when he needs to, and that he will know when he needs to. I know I can be strong for him if that's what he needs. I know it because I love him with all my heart.
Part of me is scared that I will lose him. I lost a love once and I never want to experience that heart break again. I know I can do my part, but will he be able to accept my support? I don't know. Whatever happens, I got to be loved and be in love twice in my life. Some people never get that chance even once. I will always appreciate what I have been given. Part of me will always miss Warren, you don't forget your first love. But if D will take it, he can have the rest of me.
Tuesday, January 27, 2009
I really truly hate my CF clinic.
So I'm having symptoms of CFRD (dry mouth, peeing all the time, vaginal infections, blurry vision) that pretty much go away as long as I am careful and don't eat too much sugar. So I called and asked for my clinic to set up a glucose tollerance test at my clinic visit on the 2nd. The nurse called me back and said she would set it up. Cool.
She called today with some questions for me, fine. She asked what my symptoms were, I told her. She said that they usually would just check my blood sugar with my annual labs that I'm due for anyway and said that should be enough. Uhh....what? No, sorry, not enough in my book. I am the patient and I want it so what the hell is the problem? I told her that I would feel better if we just did the stupid test. She says "Well, if you insist." Yeah, I DO insist, what's it going to hurt to do it!? I swear to God they just don't care!
She called today with some questions for me, fine. She asked what my symptoms were, I told her. She said that they usually would just check my blood sugar with my annual labs that I'm due for anyway and said that should be enough. Uhh....what? No, sorry, not enough in my book. I am the patient and I want it so what the hell is the problem? I told her that I would feel better if we just did the stupid test. She says "Well, if you insist." Yeah, I DO insist, what's it going to hurt to do it!? I swear to God they just don't care!
Saturday, January 17, 2009
CFRD??
Uhg. So, I think I am borderline for CFRD at best. I have been having bad dry mouth, peeing 900 times a day, two yeast infections in a month, blurry vision....yeah the works just about. I am getting a glucose tollerance test at my next clinic appointment on the second. In the mean time I have become aquainted with diet soda and fake sugar in my tea.
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