This floating decision of when to list has its claws in me. I'm suffocated by it while still finding sources of denial strong enough to let me have a good time some of the time. Thank God for the survival instinct of the mind/body.
I've found such comfort in my home routine. Too much? Maybe. I spend the whole day managing a treatment schedule and fitting in things that feel 'useful' like say.... paying bills, emptying the dishwasher, or looking into if Apple will grant me all my songs back from my grape juice soaked ipod (they will)..
Today became a scheduled coffee date with old coworkers. I call them my "labbies" because we worked in a lab together before I left 3 years ago for CF reasons. I love them. They, interestingly, both don't have facebook. A fact that maybe is a big deal, or isnt', but to me it is because I get all of my outside world info from there. From there I try and help people. From there I have ups and downs and laugh at peoples jokes and share their lives and mine. Right now I can't seem to update my status about my outing because it feels silly. I'm being reminded of what life was before being this sick and homebound.
After 4 hours at a coffee shop, I feel drained. Headache, frequently coughing, thirsty (despite my hot chocolate from there) and weak. I did not wear my oxygen, but I brought it in labbie #1's car when I was picked up... for comfort. I worried about becoming anxious, as I do almost always now when going out. I wasn't sure if my excitement at seeing them would overcome it. It didn't, but I masked it as best I could and got over it quicker than usual.
Labbie #2 is pregnant. So is everyone else around me. That's why I called this post "new life". They get babies, I get lungs. We all get the same thing sort of.. but of course I'd trade in a millisecond. I want children so bad.
I still have gotten nowhere with my listing plan. Nowhere except that the doc's and I have agreed that at the very least, I must get a handle on my anxiety before I sign. I think this is the only way, and yet as proud and proactive as this new choice has felt, I know that theres' a part of me that celebrates simply because the earliest anxiety appt I could get was March.. and that means more time without being listed. I'm ashamed of feeling that way. I want to be brave and eager.
I suspect that spring is going to bring more and more confirmation that life is not what it used to be.. I need that. I need to see it often so that I can't deny anything anymore.
Friday, February 18, 2011
Thursday, February 10, 2011
Answer
I'm reluctant to write this post at all because although I received my news, I am still in limbo as to exactly what to do. In hindsight, I guess I built up this news so big that I didn't think about how I might feel after getting it.
They want to list me.
The exact words were something like "we think its an ok time to list for you". The call was very short, and wrapped in her words were careful tones and gentle breaks that were meant for someone who is getting what they don't want to hear. In her 4 or 5 sentences she even said "we know how you feel about this.. so take your time, talk to your family, talk to the docs at stmikes, if theres anything you want to do, take time and do it. this is not urgent for you'. My dad actually spoke to her as well, and was told that it is common for patients to take 2-3 months to digest the decision and come sign the papers. I am not alone in my hesitency.
That said, a few things go through my mind at this time. First is an irrational suprise. I, and my family, KNEW I was close, but didn't expect this answer probably mostly because in august not only was I "too healthy for the list", but I was too healthy for them to even investigate me. I was not allowed to assess. Clearly that result was a mistake that probably was directly related to one single persons choice, but it doesn't make it mess with your mind any less and I am still quite angry about my emotional rollercoaster so far (and I know this is the tip of a very large iceberg!). I am not much sicker now than I was in August.
Another thing I think about is that a part of me knows I can't do another winter without being listed. I'm not saying I can't "do another winter", just that I know that by next winter, I wont be comfortable. I dont know why I get that feeling, but I do.
Another thought that goes through my head is my sisters pregnancy. I only wish she was due sooner so that I could with confidence tell the transplant hospital that I will wait.. 2months and see my neice/nephew and let my sister get through her pregnancy relatively stress free, and then go for it. Unfortunately for all of us, there are still 5 whole months to wait.
All of these things I'm saying will no doubt inspire opinions in my readers, and please be kind if you plan to share them in the comments. Please, even if advising me (which I am very happy to receive, don't get me wrong). Please word things carefully. I'm in an emotional place. This decision is never easy. We know what the risks are, and they are not small. I may make a bad decision. At the same time, CF is so unpredictable, no choice is decidedly "right". I could list now and be in perfect shape for my surgery. I could list now and still die waiting for my call. I could list later, get more pre-tx time, and be smart because I end up dying during surgery. I could list later and it could be the reason for my death. There simply is no "right", only stats, and odds, and experience with which to work with.
For now, I've decided that step-by-step is all I can do. I've been waiting for this news to book regular clinic. I'm not sure why I felt it made sense to put off clinic until I got the news, but I did. I am going to get in there ASAP, and work on talking to them about anxiety and what I can do in this difficult phase. I am going to get them to elaborate for me what I didn't get to go into detail about on the phone. I am aware that in many ways I am a super-ideal candidate, especially now, but basically overall. My blood type is A+, I am cepacia negative, I have few exaccerbations and ivs, and I have no allergies, intolerances, or CFRD. The one factor I thought I would have against me was my size. I am short, but I learned during my "news" phone call that my lungs are not small at all. Apparently they are 5L. I find this hard to believe, but it works in my favour. This is oddly my concern. I think if I were expecting a longer wait (I was told by the coordinator I would not expect that most likely) it would be easier to list.
The excuses keep coming to me but I realize I am on the runway and I must take off while the window is open. Please think of me and hope that I can find a way to make the right decision.
They want to list me.
The exact words were something like "we think its an ok time to list for you". The call was very short, and wrapped in her words were careful tones and gentle breaks that were meant for someone who is getting what they don't want to hear. In her 4 or 5 sentences she even said "we know how you feel about this.. so take your time, talk to your family, talk to the docs at stmikes, if theres anything you want to do, take time and do it. this is not urgent for you'. My dad actually spoke to her as well, and was told that it is common for patients to take 2-3 months to digest the decision and come sign the papers. I am not alone in my hesitency.
That said, a few things go through my mind at this time. First is an irrational suprise. I, and my family, KNEW I was close, but didn't expect this answer probably mostly because in august not only was I "too healthy for the list", but I was too healthy for them to even investigate me. I was not allowed to assess. Clearly that result was a mistake that probably was directly related to one single persons choice, but it doesn't make it mess with your mind any less and I am still quite angry about my emotional rollercoaster so far (and I know this is the tip of a very large iceberg!). I am not much sicker now than I was in August.
Another thing I think about is that a part of me knows I can't do another winter without being listed. I'm not saying I can't "do another winter", just that I know that by next winter, I wont be comfortable. I dont know why I get that feeling, but I do.
Another thought that goes through my head is my sisters pregnancy. I only wish she was due sooner so that I could with confidence tell the transplant hospital that I will wait.. 2months and see my neice/nephew and let my sister get through her pregnancy relatively stress free, and then go for it. Unfortunately for all of us, there are still 5 whole months to wait.
All of these things I'm saying will no doubt inspire opinions in my readers, and please be kind if you plan to share them in the comments. Please, even if advising me (which I am very happy to receive, don't get me wrong). Please word things carefully. I'm in an emotional place. This decision is never easy. We know what the risks are, and they are not small. I may make a bad decision. At the same time, CF is so unpredictable, no choice is decidedly "right". I could list now and be in perfect shape for my surgery. I could list now and still die waiting for my call. I could list later, get more pre-tx time, and be smart because I end up dying during surgery. I could list later and it could be the reason for my death. There simply is no "right", only stats, and odds, and experience with which to work with.
For now, I've decided that step-by-step is all I can do. I've been waiting for this news to book regular clinic. I'm not sure why I felt it made sense to put off clinic until I got the news, but I did. I am going to get in there ASAP, and work on talking to them about anxiety and what I can do in this difficult phase. I am going to get them to elaborate for me what I didn't get to go into detail about on the phone. I am aware that in many ways I am a super-ideal candidate, especially now, but basically overall. My blood type is A+, I am cepacia negative, I have few exaccerbations and ivs, and I have no allergies, intolerances, or CFRD. The one factor I thought I would have against me was my size. I am short, but I learned during my "news" phone call that my lungs are not small at all. Apparently they are 5L. I find this hard to believe, but it works in my favour. This is oddly my concern. I think if I were expecting a longer wait (I was told by the coordinator I would not expect that most likely) it would be easier to list.
The excuses keep coming to me but I realize I am on the runway and I must take off while the window is open. Please think of me and hope that I can find a way to make the right decision.
Thursday, February 3, 2011
While I wait..
Still awaiting the call for the decision on my listing.
In the meantime, some close CF friends have had some big experiences lately (ranging from getting 'the call' to some terrible news while in hospital) that have me reviewing this crazy battle we fight and the love we share.
Here's the Great Strides walk VIDEO my sister created for my team back in 2009 on my birthday. She really captured every emotion I had/have in creating this and I'm grateful for this and her (& Taylor Swift for the suprisingly fitting song).
Enjoy.
In the meantime, some close CF friends have had some big experiences lately (ranging from getting 'the call' to some terrible news while in hospital) that have me reviewing this crazy battle we fight and the love we share.
Here's the Great Strides walk VIDEO my sister created for my team back in 2009 on my birthday. She really captured every emotion I had/have in creating this and I'm grateful for this and her (& Taylor Swift for the suprisingly fitting song).
Enjoy.
Thursday, January 27, 2011
No News is... still no news
Just a quick update to say I still haven't heard whether the docs think its time for me to list for transplant. I have, however, recently got to the point where I feel like I have done all the possible thinking/talking that can be done in "preparation" for this news. Nothing can be accomplished by this, of course, but its weird how one day I just woke up and felt that the obsessive thinking was over. Sometimes you just have to clear your mind, live your life, and let the world throw its punches.
Saying that, when the call comes I guarantee I will be shaking in my boots, and depending on the answer, will spend a great deal more time in a new thought zone.
In talking so much with fellow sickies.. I think I have begun to understand the usefulness of social workers/psychologists and the like. I have to admit, from a young age I was always wary of them. Maybe because at 12 I was forced to see one regarding my picky eating. Maybe because the whole psychology area already interested me at 12 and I felt that I was on an equal playing field. Whatever it was I didn't see the point. Sometimes, though, things don't need a definitive "cure". Sometimes if someone gently directs you to think something out in a new way, it makes it just a little bit easier to cope, or makes it fall into line and make a little more sense. And sometimes thats just enough to get you through.
Saying that, when the call comes I guarantee I will be shaking in my boots, and depending on the answer, will spend a great deal more time in a new thought zone.
In talking so much with fellow sickies.. I think I have begun to understand the usefulness of social workers/psychologists and the like. I have to admit, from a young age I was always wary of them. Maybe because at 12 I was forced to see one regarding my picky eating. Maybe because the whole psychology area already interested me at 12 and I felt that I was on an equal playing field. Whatever it was I didn't see the point. Sometimes, though, things don't need a definitive "cure". Sometimes if someone gently directs you to think something out in a new way, it makes it just a little bit easier to cope, or makes it fall into line and make a little more sense. And sometimes thats just enough to get you through.
Sunday, January 9, 2011
Drama and more waiting
Most of the assessment is done. It's kind of hard to believe.
A year-long venture. More if you count my pre-planning. Being done is only part of the battle. The waiting now will be among the hardest mental things I'll do. Everyone says how hard it is to wait for the call. I've always been an anticipator. I worry before others worry. That's why I think I will worry most about if it is "time" now.
When my friend K was dying after contracting a severe strain of cepacia, I cried all the time. I remember in particular on Sunday November 9th my sister and I went to a backstreet boys concert. I cried at one particular song, ironically titled "you can let go". The next day, K died. My first close person ever to die. I was tearless. I spoke to his/our friends on the phone completely stoic. Not because it hadn't hit me yet, but because it had hit me way earlier. I wonder if listing will go this way for me. I have a month to wait to hear. Until then, I will tell my story of the drama of assessment. Here goes:
So as anticipated, the early mornings were the worst thing about assessment. I enjoyed our hotel, however.. which was a nice suprise at a time like this. The oxygen company, who initially claimed it would cost money to drop me off a concentrator, did so for free after some prompting and nothing at all went wrong with that. The worst test was the MUGA, as all my facebook friends pre-warned, mostly because it involved exercising while laying down. Also, though, because it was soooo long. I swear from start to finish that test was 2 hours AND involved 2 injections. This test proved to be the source of a lot of problems as the week progressed. Before I move on, and since the topic of this blog is radiation, I should also mention that when I went for my chest x-ray at 9:45am after my bloodwork on the first day, I was told I was "early" for my CT (12:30pm). When I corrected them, they proceeded to do the CT and chest xray back to back at 10am. That made me uncomfortable.... moving along....
I had noticed in the information book that the Bone density scan warns that it cannot be done within a week of a test involving radioactive dye. The dye test (VQ scan) was slated right after the bone density test, so that was ok, but the MUGA was the day before. The MUGA does not involve dye but does involve a radioactive tracer. I made sure to ask about this with the transplant coordinator when I arrived on the first day. She reassured me that it was fine, as I expected knowing that all of the pre-transplant CF'ers do this same regime. That final test day came, and when I was filling out the consent form for the bone density scan, it asked me 3 "important" questions, and one was a variation of the radiation question, this time no mention of the word "dye". I spoke with the bone density technician to be sure, and she was not completely secure with me doing the test but said that 90% of the radioactive tracer should be gone by this point (24 hours later) and that she could "test" scan me on the machine before completing the test. I thought about it and agreed, and the pre-scan apparently showed no remaining radiation.
Fast-forward to 3 hours later and the VQ scan. Of course this is the longest hallway ever too. We arrive and I walk in, and the guy says "this will be a very short test, about 7 mins". I reply that that is wonderful because the MUGA scan I had the day before was forever. At this point he gets a horrified look on his face and says "you can't do this the day after that test!". I'm basically trying to form words at this point as I try to make sense of so much miscommunication and disagreement between supposed medical professionals. He walks me to the machine, and shows me a screen, apparently doing what the bone density woman had done that morning. His screen lights up like a Christmas tree with my torso, and I almost burst into tears at the realization that I can see the radiation and have no idea what the right thing to do is. He and his sidekick in VQ scanning both reassure me that I'll probably be fine from the earlier bone density scan, and that no, I cannot do this test right now because of the radiation still inside me. They may have said something about risks towards my heart as well. I march to my husband and we march back upstairs to speak with the coordinator, 2 hours before we're supposed to be there for the final meeting with the dietitian.
Upstairs, the secretary gives me a disgruntled look as she contacts the receptionist in charge of the coordinators business.. this woman, after 25 minutes of us sitting waiting (with me worrying and saying things like "I'm supposed to trust these people to save my life?" under my breath) comes and says "they were wrong, it wouldve been fine, but we'll reschedule it for next week". I'm sure it was fine... after all the hundreds who have gone before me I certainly can't be the first to discover such an apparently huge problem. All I know is it left a horrible taste in my mouth, has me visiting two separate hospitals on a snowy day this week, and that if I ever get cancer I'm always going to think about the assessment where no one seemed to be on the same page.
A year-long venture. More if you count my pre-planning. Being done is only part of the battle. The waiting now will be among the hardest mental things I'll do. Everyone says how hard it is to wait for the call. I've always been an anticipator. I worry before others worry. That's why I think I will worry most about if it is "time" now.
When my friend K was dying after contracting a severe strain of cepacia, I cried all the time. I remember in particular on Sunday November 9th my sister and I went to a backstreet boys concert. I cried at one particular song, ironically titled "you can let go". The next day, K died. My first close person ever to die. I was tearless. I spoke to his/our friends on the phone completely stoic. Not because it hadn't hit me yet, but because it had hit me way earlier. I wonder if listing will go this way for me. I have a month to wait to hear. Until then, I will tell my story of the drama of assessment. Here goes:
So as anticipated, the early mornings were the worst thing about assessment. I enjoyed our hotel, however.. which was a nice suprise at a time like this. The oxygen company, who initially claimed it would cost money to drop me off a concentrator, did so for free after some prompting and nothing at all went wrong with that. The worst test was the MUGA, as all my facebook friends pre-warned, mostly because it involved exercising while laying down. Also, though, because it was soooo long. I swear from start to finish that test was 2 hours AND involved 2 injections. This test proved to be the source of a lot of problems as the week progressed. Before I move on, and since the topic of this blog is radiation, I should also mention that when I went for my chest x-ray at 9:45am after my bloodwork on the first day, I was told I was "early" for my CT (12:30pm). When I corrected them, they proceeded to do the CT and chest xray back to back at 10am. That made me uncomfortable.... moving along....
I had noticed in the information book that the Bone density scan warns that it cannot be done within a week of a test involving radioactive dye. The dye test (VQ scan) was slated right after the bone density test, so that was ok, but the MUGA was the day before. The MUGA does not involve dye but does involve a radioactive tracer. I made sure to ask about this with the transplant coordinator when I arrived on the first day. She reassured me that it was fine, as I expected knowing that all of the pre-transplant CF'ers do this same regime. That final test day came, and when I was filling out the consent form for the bone density scan, it asked me 3 "important" questions, and one was a variation of the radiation question, this time no mention of the word "dye". I spoke with the bone density technician to be sure, and she was not completely secure with me doing the test but said that 90% of the radioactive tracer should be gone by this point (24 hours later) and that she could "test" scan me on the machine before completing the test. I thought about it and agreed, and the pre-scan apparently showed no remaining radiation.
Fast-forward to 3 hours later and the VQ scan. Of course this is the longest hallway ever too. We arrive and I walk in, and the guy says "this will be a very short test, about 7 mins". I reply that that is wonderful because the MUGA scan I had the day before was forever. At this point he gets a horrified look on his face and says "you can't do this the day after that test!". I'm basically trying to form words at this point as I try to make sense of so much miscommunication and disagreement between supposed medical professionals. He walks me to the machine, and shows me a screen, apparently doing what the bone density woman had done that morning. His screen lights up like a Christmas tree with my torso, and I almost burst into tears at the realization that I can see the radiation and have no idea what the right thing to do is. He and his sidekick in VQ scanning both reassure me that I'll probably be fine from the earlier bone density scan, and that no, I cannot do this test right now because of the radiation still inside me. They may have said something about risks towards my heart as well. I march to my husband and we march back upstairs to speak with the coordinator, 2 hours before we're supposed to be there for the final meeting with the dietitian.
Upstairs, the secretary gives me a disgruntled look as she contacts the receptionist in charge of the coordinators business.. this woman, after 25 minutes of us sitting waiting (with me worrying and saying things like "I'm supposed to trust these people to save my life?" under my breath) comes and says "they were wrong, it wouldve been fine, but we'll reschedule it for next week". I'm sure it was fine... after all the hundreds who have gone before me I certainly can't be the first to discover such an apparently huge problem. All I know is it left a horrible taste in my mouth, has me visiting two separate hospitals on a snowy day this week, and that if I ever get cancer I'm always going to think about the assessment where no one seemed to be on the same page.
Thursday, December 30, 2010
Sleeping with O2 & percussing
And all there really is to combat anxiety of illness, is action. It's what I've come down to. A powerful, and frustratingly late lesson. Even when it doesn't work, action is soothing and gives you a sense of control that is so desperately needed.
4 or 5 mornings ago I woke up with the worst foggy/painful-head. I occasionally wake up with headaches, but its very occasional and I assumed that when it was time for me to offcially wear oxygen at night, they would be constant. I decided 5 days ago that it would not hurt to try sleeping with my o2 at a low flow rate to see how it goes. One of the (many) things holding me back was worrying about how loud the concentrator was, and its effect on my, but particularly my husbands sleep. We thought of putting it in the kitchen and winding the tubing to our room. Worked well. When I woke up after that night, I felt a clear head. It wasn't a lack of pain that was striking, but the clarity. I immediately thought this was probably pretty overdue.. Its frustrating how subtle it comes on though. For those of us who drift down in lung function with few exaccerbations and admissions, its really hard to catch the moment of change. Nevertheless, I even feel that some of the anxiety symptoms I was getting in the daytime have been lessened by this... I will have to bring it up at clinic.
Another change I've made recently is being committed to doing more physio. My 3 years of consistent one-a-day physio has had its run, and its time to up my game. Recall that I did very very little physio for all of my teen years/young adulthood. Close to none, in fact. I finally realized, after many attempts at a second physio with my flutter, that maybe if I did percussion, I would be more compliant. Lets face it, percussion is easier. When you stick a tool in your mouth and exercise directly from the organ that is dying on you, it's very wearing. I was always known to make things harder than they needed to be.
So, I decided to bring back the percussor into my life. I had one last when I was maybe 8 or 10. I ended up getting the Eper500 2 weeks ago. I went through hospital channels and therefore did not actually choose my percussor but its kind of nice that I know the family who created this one have a daughter with CF and therefore understand the whole process, lifestyle, challenges, etc.
I wish I could coach noncompliant teens like myself through CF. Actually, I never even considered myself noncompliant. . I really just trusted that I was going to be okay, despite what the numbers were saying. I mean, when you feel like crap, often you don't realize it until you are made to feel better and can see the difference. My first admission went like that, and was the first step on the road to my changing. A step I fought for years. I swear if I can get through this leg of my journey and come out the other side I will help as many CF'ers as I can to see everything as it really is. There is too much at stake to wait to learn.
4 or 5 mornings ago I woke up with the worst foggy/painful-head. I occasionally wake up with headaches, but its very occasional and I assumed that when it was time for me to offcially wear oxygen at night, they would be constant. I decided 5 days ago that it would not hurt to try sleeping with my o2 at a low flow rate to see how it goes. One of the (many) things holding me back was worrying about how loud the concentrator was, and its effect on my, but particularly my husbands sleep. We thought of putting it in the kitchen and winding the tubing to our room. Worked well. When I woke up after that night, I felt a clear head. It wasn't a lack of pain that was striking, but the clarity. I immediately thought this was probably pretty overdue.. Its frustrating how subtle it comes on though. For those of us who drift down in lung function with few exaccerbations and admissions, its really hard to catch the moment of change. Nevertheless, I even feel that some of the anxiety symptoms I was getting in the daytime have been lessened by this... I will have to bring it up at clinic.
Another change I've made recently is being committed to doing more physio. My 3 years of consistent one-a-day physio has had its run, and its time to up my game. Recall that I did very very little physio for all of my teen years/young adulthood. Close to none, in fact. I finally realized, after many attempts at a second physio with my flutter, that maybe if I did percussion, I would be more compliant. Lets face it, percussion is easier. When you stick a tool in your mouth and exercise directly from the organ that is dying on you, it's very wearing. I was always known to make things harder than they needed to be.
So, I decided to bring back the percussor into my life. I had one last when I was maybe 8 or 10. I ended up getting the Eper500 2 weeks ago. I went through hospital channels and therefore did not actually choose my percussor but its kind of nice that I know the family who created this one have a daughter with CF and therefore understand the whole process, lifestyle, challenges, etc.
I wish I could coach noncompliant teens like myself through CF. Actually, I never even considered myself noncompliant. . I really just trusted that I was going to be okay, despite what the numbers were saying. I mean, when you feel like crap, often you don't realize it until you are made to feel better and can see the difference. My first admission went like that, and was the first step on the road to my changing. A step I fought for years. I swear if I can get through this leg of my journey and come out the other side I will help as many CF'ers as I can to see everything as it really is. There is too much at stake to wait to learn.
Thursday, December 23, 2010
Assessment, Anxiety & Christmas
I've written 1 or 2 new blogposts since my last. I can't seem to finish them. These spells of iv's followed by crashing right back down to where I was pre-ivs are taking their toll on me. I think I would do better to not go in at all. There was a time when I would think/say that simply because I didn't like the hassle. I can handle all of the hassle now. All of it. Even missing my hubby, as hard as it is.. for the greater good to have ultimately more time with him.. I can do it. But thats just not how it works. I seem to only lose time.
To top it off, having the completion of my assessment looming is becoming harder than I anticipated. I was and am looking forward to having it "complete". I will rest easier knowing that if I have a quick downfall I can be listed quickly. What disturbs me, though.. is going into this lower than I had expected and hoped. I'm scared they are going to want me listed now. I'm scared of how everyone, and especially I, would deal with that. I'm sure all of this is very common, and I know its eventual.. but I just don't know how I'll get by with the whole process of waiting, or, conversely... If I get to wait, and then get super super sick like some of my friends have suddenly.. I don't know how I'll deal with THAT.. I really don't know which option I'd rather have...And that is the bottom line of how I feel. Trapped between two terrible options.
Anyone who's had anxiety issues knows its hard. But I think the ultimate is having anxiety about being sick, when you ARE sick.. thats frustrating. I've always been logical and scientific in my thought processes, and when I'm feeling short of breath, or my hearts racing, or i feel weak or want to faint.. i can't separate CF from fear. The only clear scientific evidence I have is that these feelings occur more outside of my home than inside. They do happen here, just way less. Which proves at least 50% of it is in my head. I've officially decided to plead my case to my doctor and see what she can offer me. I only hope I am not treated like a crazy person, or someone who is "sad" or "depressed". I LOVE my life.. In fact, I love it so much, it breaks my heart that I'm losing it piece by piece.. and SCARES me.. Its all fear here, and its all about CF. I really hope theres something really good that can be done.
Finally, with all this going on in my head, we've got Christmas. The most magical and most stressful holiday of them all. Some of my worst skills are exercised at this time of year. Buying people meaningful gifts (on time), going out in crowds, bridging the gap between families and having little nit picky fights about things that really shouldn't matter. I'm praying the best will overshadow the hard this Christmas season.. I have tons to be grateful for, tons to look forward to, and a beautiful family to share it all with. I just have to focus on that, and that alone.
To top it off, having the completion of my assessment looming is becoming harder than I anticipated. I was and am looking forward to having it "complete". I will rest easier knowing that if I have a quick downfall I can be listed quickly. What disturbs me, though.. is going into this lower than I had expected and hoped. I'm scared they are going to want me listed now. I'm scared of how everyone, and especially I, would deal with that. I'm sure all of this is very common, and I know its eventual.. but I just don't know how I'll get by with the whole process of waiting, or, conversely... If I get to wait, and then get super super sick like some of my friends have suddenly.. I don't know how I'll deal with THAT.. I really don't know which option I'd rather have...And that is the bottom line of how I feel. Trapped between two terrible options.
Anyone who's had anxiety issues knows its hard. But I think the ultimate is having anxiety about being sick, when you ARE sick.. thats frustrating. I've always been logical and scientific in my thought processes, and when I'm feeling short of breath, or my hearts racing, or i feel weak or want to faint.. i can't separate CF from fear. The only clear scientific evidence I have is that these feelings occur more outside of my home than inside. They do happen here, just way less. Which proves at least 50% of it is in my head. I've officially decided to plead my case to my doctor and see what she can offer me. I only hope I am not treated like a crazy person, or someone who is "sad" or "depressed". I LOVE my life.. In fact, I love it so much, it breaks my heart that I'm losing it piece by piece.. and SCARES me.. Its all fear here, and its all about CF. I really hope theres something really good that can be done.
Finally, with all this going on in my head, we've got Christmas. The most magical and most stressful holiday of them all. Some of my worst skills are exercised at this time of year. Buying people meaningful gifts (on time), going out in crowds, bridging the gap between families and having little nit picky fights about things that really shouldn't matter. I'm praying the best will overshadow the hard this Christmas season.. I have tons to be grateful for, tons to look forward to, and a beautiful family to share it all with. I just have to focus on that, and that alone.
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