Posted by: Yang | January 31, 2010

Here we are again…

It is 4:39am, early Sunday morning, and it’s one of those ‘nights’ again. Can’t sleep, or actually, I did sleep earlier, but somehow woke up and can’t go back to sleep. Had trouble falling back to sleep, my breathing seems to be a little off, not being able to take deep breathes and my throat is really dry. If I lay on my chest, that helps the breathing a little more easier. But even at that, there’s a sense of shortness of breath. So I decided to just get up, do a neb (albuteral) treatment and hook up on the oxygen. Hopefully this will help.

The last few weeks have been a little rough on the sleeping. Overall, I do eventually fall asleep. But to get there, I have to almost sleep at a 45 degree angle. Using one of those resting pillows that is meant to help you sit up against the wall with arm rests. And then two pillows on top of that to make it some what comfortable to sleep. Thats been helping to do the trick for me to fall asleep and stay sleeping without making me short of breath. The only down side to that is that it is a little awkward and uncomfortable. Because of the angle that my head was in, I’ve actually had 2 occassions of waking up with a soar neck for that day. So sleeping has been difficult and frustrating for me this past few weeks.

So here we are again, me not being able to sleep and needing to get this frustration out of my system. It’s ironic cause during the day, I’m fine for the most part. I mean, last night I was feeling pretty well. Went to the YMCA to meet with a trainer, it was a one time intro for new members. She showed me around and helped me decide the excercise equipments that would help me. Plus, showed me how to use them properly. I got to try them and see if I would like them. For the whole hour and a half that I was there, I probably did about 20 minutes of workout, plus shot a few hoops too. Came home feeling pretty good and refreshed. But I’ve realized that if I stay up too late, wake up ‘early’ the next day (around 7:30am), it throws my body off. Cause when I’m feeling this way, it feels like breathing takes extra effort and it feels like I’m drawing my last few breaths. Of course, that’s probably all in my head to feel that it’s my last few breaths. But why do I feel like that every time I have these episodes? I guess that’s what bothers and scares me the most, is feeling like I’m drawing my last breath. I know I shouldn’t be thinking this way but when breathing takes extra effort, and you’re feeling tired at the same time, it just seems like the logical thing to assume. Plus, it’s way early in the morning so my mind is probably not at it’s sharpest. Not to mention my body is feeling exhausted and tired too.

I should also note, although I don’t know how much it has to do with it but earlier this evening, I had one can of beer at my friends daughters birthday party. Earlier that afternoon, I had taken some meds, Vitamin D and another one (can’t think of the name right now). Like I said, I don’t know if that contributed to me feeling like this but I figured it’s probably worth noting it at the very least.

Well, I’m starting to get tired so I’ll go and see if I can get some sleep…

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Posted by: Yang | January 17, 2010

shortness of breath…

It is 3:09 a.m, Sunday January 17, 2010. Everyone is sound asleep, something I wish I was doing too. Instead, I’m up doing an Albuteral neb, hoping that it would help ease the shortness of breath that I woke up to. Its not surprising though, because I have been feeling a below my baseline for a few days now. At least for the last week or so, maybe even two. I just know that a week or two after I got out of the hospital, it seems as though I came home and caught an infection. Funny how that works, went into the hospital cause I wasn’t feeling too good. Only to come out feeling better, and then seem to start declining again. And now, for the last week and a half now, I’ve been experiencing some sharp shooting tingling pain under my right shoulder blade. At least thats where it started. A few days ago, I felt it in my left shoulder too. Originally I thought it might be a pneumothorax (collapse lung). But then I wasn’t ‘out of breath’, or any of the symptoms of a sudden collapse lungs; sweats, fast heart rate, extended burning pain under the shoulder blade, and of course, short of breath. However, my breathing was some what a little more difficult than usual. Maybe not enough to cause any alarm, but enough for me to notice something wasn’t right. I figured, if thats the case, then maybe I should give it a few days. A few days turned into a week, and a week turned into about two weeks. The sharp shooting pain comes every now and then. Mostly when I either sneeze or cough. There have been a few occasions where I’m just sitting or doing nothing and it just comes on. When it does happen, it comes and go fairly quick. A couple of times, I have been short of breath when that happens. Usually once it passes, I’m back to normal so I figured maybe it was just my nerves. After all, I did havce surgery done on my right lung in the past for a pneumothorax. And so I try to self diagnose myself, using what I know and checking online for symptoms and all. I know that should go in to the doctor to have it checked out, but part of me feels that if my body can heal it on its own then I’ll let it do its work. Its ironic cause if it was someone who was having these symptoms, I would be suggesting for them to go in and have it checked out right away. Maybe the reason why I don’t want to go is because I feel like I just got out and its hard for me to accept the fact that maybe I’m coming down with another infection. I wish that this isn’t the case, but theres a part of me that is certain I’m coming down with an infection. And this infection is whats causing the shortness of breath and the other symptoms that has made me feeling under the weather. It hasn’t been bad to a point where I’m tired and bed ridden. But psychologically and emotionally, I am very exhausted. Which must mean that my body is fighting this infection pretty hard for me to feel this way. I feel like I’m pushing myself mentally to be as positive as I can, believing that as long as I stay positive, try to maintain my appetite and do my treatments, my body will do the rest and weather this infection. At least thats the idea. But tonight probably has been the worst so far because it woke me up from a ‘good’ sleep. As I said earlier, I have been feeling short of breath every now and then. But since last night, around 11pm when I got home, something felt off more than the last few days. I figured maybe it’ll pass. So I did my vest and neb treatment as usual, and 3/4 of the way through, I felt a dull sharp pain under my left shoulder blade. That got me short of breath for a little bit. Since then, I have been trying to sleep and stay calm. And when I decided to go to sleep around 12:30-1, I was having a hard time falling asleep. Each time I laid down, on two pillow, I kept on feeling short of breath and it was a challenge taking a full deep breath. I should also mention that I have the oxygen on at 2 liters as well, since I started my treatment earlier. So of course, as expected, because I wasn’t able to take full deep breathes, my mind starts going into panic mode. Which makes the situation worse. But I try to stay calm so I got up, did some upper body stretching. Tried to take some slow deep breathes. After a few of those, it seem to help a little. At least enough for me to be able to fall asleep. Only to be woken up suddenly cause I felt like I was short of breath again. Not exactly sure but all I know is that I came to, realizing that I wasn’t asleep anymore. It was like my body woke itself up, then it took a sec or so for me to realize that. Once I realized I was up, I was wondering why. Then I noticed that my breathing was short and faster than usual. Not like I just got done running but on a scale of 1-10, where 10 is fast, I would say maybe a 5 or so. Lets just say fast enough for me to be woken up by my own body. I think it was trying to wake me up and let me know something wasn’t right. So I got up and started to do some stretching again. I forgot to mention that since this has been happening, for the last 2 weeks, during the evenings and night time, I have seriously thought about going in to the E.R. Only to feel ‘better’ during the day and then I don’t follow through to get the check up. Earlier was no exception, I was very tempted to wake one of the other drivers up and take me to the E.R. But I held back cause I rationalized that if I can somehow keep it under control where I can fall asleep, then it can’t be that bad. And if it does get worse, then I can always call 911. I know that I’m probably pushing my luck here, but for the reasons I mentioned earlier, I have not gone to the E.R or clinic to get checked up. Foolish? Probably so. I know that the sooner I get in, the sooner I can be treated. So it’s only logical that I go in. That’s not hard to figure out. But I guess mentally it is very hard for me to accept the fact that I’m getting sick again. It is now 3:48am, which means I’ve been up for at least 45 mins now, just typing and hoping that I will be able to go to sleep later. I went downstairs and bumped up the oxygen to 2.5 liters now. 2 liters seem like it wasn’t enough so hopefully 2.5 will do the trick. Thats another sign that lets you know you’re coming down with something. Not only that you have to use the oxygen, but that the liters keep on going up. Sad how sometimes there’s all these signs and symptoms that you see and realize, but still won’t act accordingly. Where’s the logic and sanity in that? Perhaps it’s tainted and distorted by the fear and disorientated state of the mind when it is under the influence of this chronic illness. I”m not sure if that made any sense, but in my mind it did. Times like this, it would be nice to have a doctor like House to be the one to diagnose and treat me. But above all else, I really wish this doesn’t have to be at all. The illness, the short of breath, the infection, the constant battle to just be normal. I just want all of these problems and burdens to dissappear. I guess what I’m saying is that I’m tired of being sick and tired. I have hung in there for the fight, infection after infection and its wearing me down, mentally and physically. My body and mind can only take so much. Once in infection mode, my mind somehow defaults to a negative mentality. Which doesn’t help cause it’s suppose to be positive.

Okay, I think my body is trying to tell me to go back to sleep now. Feels like the neb and typing helped somewhat. Breathing doesn’t feel so difficult now, so hopefully I’ll be able to go lie down and fall asleep. Wake up refreshed and feeling well rested. That this early morning was just a fluke and a thing of the past. Cause life is full of things to enjoy and live out. I need and want to get better, so that I can enjoy every opportunity I get with life. Life isn’t about being sick and feeling shity like how I have been. It’s about LIVING and ENJOYING the life that you’ve been giving.

Posted by: Yang | December 30, 2009

How I’ve been feeling…

At the begining of the month, I was hospitalized. Not surprisng though, given how I have been feeling up until that point. In early fall, I started to have some symptoms that just didn’t improve over a period of time and with the cold settling in, it was just a matter of time. Thats not to say that I didn’t try to prevent it or that I wanted to be sick. Although a part of me did want to go to the hospital, but more so for a ‘tune up’ and not because I was getting sick. Either way, I spent a week in the hospital and an additional two weeks on home IV throuah a pic line. Needless to say, I was more or less confined at home and couldn’t really do much. Although I was free to go and come as I pleased, my left arm was physically limited to what I can do, which made me felt handicapped, as if the CF didn’t already do that.

I should also note that after a few days of treatment at the hospital, my PFTs went from 35 to 40 (I believe its the FEV1). The day before I left, it was 39. Which to me, was a good sign. Two weeks later when I went back to do my annuals and check to see if I still needed to be on antibiotics, I felt really good. I haven’t felt that liberating in terms of breathing for a few months, maybe even years. So I was really psyched. The annuals went as usual, 8+ hours of clinic testings and then finally came the Dr’s appt. Aside from being Vitamin D deffeciency, I’m pretty much at the verge of having ostheoporosis, I got the good news. That since my PFTs look good, blew a 39 (and that was without doing a vest treatment for 24 hours) and that I don’t look or feel sick, I can have the pic line taken out. Whoo hooo!!! Got the tune up I’ve been dreading for in the back burner for a while and I’m ready to take on the cold weather of MN winter. Or so I thought.

A few days ago, I started having a runny and stuffy nose. Then last night, I started developing a cough. And in the past few days, the upper right area of my back started feeling tense again. Usually thats not a good thing, because it makes me feel like the mucus’s are building up right there and it’s causing that tightness. But the doctors reassured me that it’s muscle related and not the actual lungs. Which somehow makes sense because I’ve noticed that if I have someone use their elbow and put pressure on that spot, it helps to relax the muscle and the tension goes away. But physcholigically, I still think that it’s mucus’s building up and causing the tightness. At any rate, with the runny nose, sneezing, stuffy nose, and now dry cough, I can only hope that it does NOT lead to an infection, again. That my body will be able to fight off the cold and I’ll bounce back to a good base line. I’ve been trying to make sure I eat well, stretch, and most importantly, do my treatments. But there has been one thing that I have not done well at, which is get enough sleep. For some reason, I can not go to sleep around 10 or 11pm, I have tried and end up laying in bed til about 12am or so. Tossing and turning, feeling frustrated and then it just messes me up for a while.

Having said all that, what I was trying to get at was that this evening, for the second time this week, when I sneezed, the area right above your colour bone and shoulder, the part where it dips down, I felt a sharp prickle there. In the past, that usually was an indication that there was a leak in my lung. I’m not sure if it’s leaking there, or if it’s leaking somewhere else, and the air is rising up to that area. Whatever the case, I do NOT need a pneumothorax. The way I see it, I had one major one already (where I actually had surgery to close it and parts of my lungs were cut and stapled), not to mention the few minor ones in the past – I am done with it. No more!!

I don’t want to be sick anymore. I really don’t, with the last few months and years, with my health declining over all, I don’t need things to get any worse. Especially when I’m trying so hard to get better and actually get into a routine of regular excercising so that I can have better cardio and stamina. There’s so much that I have planned ahead that I don’t want any sickness to derail me from reaching my goals. I really want to beat the odds and overcome this lack of healthiness. And being that when I don’t feel well, with all these symptoms, phsycologically and mentally, I’m not in a positive mode either. With all that combined, it just makes everything seems so much harder. It’s like they’re all connected somehow, if one goes bad, it’s only a matter of time before the other ones follow. First the physical, then the pshcological, then the emotional. Trust me when I say that I have tried, and still trying, to be positive. I believe that a positive mind and a positive attitude can really make things better. Which is why I try to do positive things like go out instead of just staying home and watching tv all the time. But with being so broke and the weather being so crappy, there’s not much other options. Sometimes, I feel like all I need, is just a break. In my mind, I have a lot of things planned out, what I want to do, where I want to go, I just need the door to be opened and then I’m running for it.

What I really would like to do is move into a 1 or 2 bedroom apartment, have a steady income, do regular excercise on top of my treatments, and live in a warm weather place. Thats what I think would really set the grounds for a better and healther living condition for me overall. Cause I think with this cold weather, being broke, and jammed pack together in this little house has taken a huge toll on my overall health. I can’t just blame it on one thing, cause I know that it’s a combination of several issues. I just hope that when the time comes, and things fall into place, I can really make this happen for me. Cause I truly believe with all my heart, that it will have a positive impact on my overall health if I am able to accomplish my goals. For now, I just have to hang on and tell myself that it’s only a matter of time. I can only hope that the time will come soon.

Posted by: Yang | November 30, 2009

230am

2:30 a.m, thats the time that I woke up from a night of feeling short of breath. And to think that this pass weekend, I was starting to feel better. For about a week or two now, I have not been that well. From shortness of breath to chest pains and tiredness. Psychologically, I was sure I had pneumonia. I went as far as going to WebMD.com and Ecureme.com to check the symptoms. And from what I understand, I had most of the symptoms listed. I debated for days on end, should I go in to the hospital to get checked up? This went on and on, trying to somehow justify that I should just go. But I never did.
I’m not sure why I haven’t gone yet. There’s a part of me that knows that I should go in, regardless of what the test results may come back, that I have pneumonia or not. Because of the way that my body has been feeling, especially my respiratory functions, I NEED to be checked in. I don’t know how much longer I can do this anymore. One day feeling fine, only to be feeling tired and short of breath the next day. And to be honest, when I feel crappy like this, I often wonder how people with CF die. I mean, I read about a story of an individual who had CF, and it said that when he died, he was on his death bed and was put to sleep. Do we get so tired to a point where we just literally put to sleep so that our passing can be peaceful? This is almost a question that I ask not hoping to find the answer for (I’m sure there’s a word for this too). Because if I do know the answer, the next time I feel like this, my mind would get some really crazy ideas. Not that it already hasn’t, but knowing the answer would be like putting the nail to the coffin. And in this situation, it’s almost a literal meaning. Which is why it’s a struggle for me. Do I really want to find out? Is it smart to know? How would it benefit me from knowing? Should I just go with the flow and see what happens? My mind is bombarded with questions after questions, somehow, trying to justify the main question, do i really want to find out?
Tomorrow (or actually today, because its already 2:38 am) is Monday, November 30, 2009. It’s a new week, a fresh start, should I call up my clinic and see if I can go in? Or am I going to default back to the same old routine of wasting time and suffering in the mean while. I do really hope that I will not do the latter, because it only leaves me feeling like shit every time. I know that it sounds like a very easy and obvious decision to make, but somehow, someway, I’m making it more difficult than it needs to be. Maybe I shouldn’t think too much about it and just do it, because sometimes when you think too much, it muddies up the obvious.

Posted by: Yang | September 10, 2009

woke up from a dream

It’s about 3:19am on a early Thursday morning, September 10, 2009. I just woke up from a dream that was very intense. But before I go into detail, I should note that before going to sleep I felt fatigued as if my body was tired from a long day. Something that may be attributed to lack of oxygen type of feeling. That was around about 12am.

In my dream, I was at a good friends house. Now this friend, DR, has had me house sit several times before in the past (in real life). Back to the dream; I walked into the house and noticed that it wasn’t right. Someone was in there, so I went to the basement. Down there were some people that I knew, cousin and friends. Or actually, before that, these friends and not the cousin, were trying to get to the other side of a flat land by swinging accross. Everyone else went and then it was my turn, when I got to the other side, I saw someone that my brothers use to hang out with. He hasn’t been around for many years now and their relationships hasn’t been the same for a long time. Anyhow, I was confused as to why he was there. And then somehow we were in the basement of my friends house. I was uneasy that they would be in DRs house since they don’t even know him. So I figured I should go lock the doors and windows. I went to the windows first, got into the bath tub, (the bathroom scene was from a different place, a place where I use to live with some other friends). I noticed that the windows were opened, so I tried to close them. But then out of no where I see someone coming up to check the window as if they wanted to see why it’s taking so long. So I decided to lay as if I was giong to take a bath. This by the way was all in the day time. Then out of no where, the friends from the basement were all outside the window and talking, they weren’t aware of my presence until one of them saw me through the blinds and was asking who I was. Looking in and realizing that it was me, they greeted me and asked how things were going for me. As we started to talk, some people maybe about 5 or so, came through the back. One of the guys had his hand by his waist like he was going to pull out a gun. One of the two friends who was by the window chatting with me, told the guy closest to the strangers approaching and said for him to be ready incase they start shooting. So the closest guy to them grabs his gun from his waist and was ready. The group of guys asked to speak to someone from the basement. So I took him downstairs, and turned out it was one of my brother that he wanted to speak with. As we were coming back up, something didn’t feel right so I started to panic and was trying to lock all the doors, for some reason there were 3 doors. I locked 2 of them, which felt like it took forever. Then I realized that I needed to find my cell phone, found the house phone first and then saw my cell phone lying on the table and grabbed it. I followed the other guy and my brother through the front door (now the house is the house that I use to live in but for some reason it was supposedly my friends home). By the time I got outside, everyone seem to just be chilling and talking amongst themselves. I asked my brother what was going on and he told me that there were some verbal confrontation in the hood but cool now. All they wanted was to get a cousin of mine over so they can talk. My brother asked if I had my cousins number, by the time he was done asking me, somehow my cousin was already there. He comes up to me and greeted me, asked if I needed any help carrying laundry loads. But it seems that he only asked that cause he was uneasy of the people that was there. I told him no I don’t have any and patted him on the shoulder. Next thing I knew, some child hood friends and his brothers were there and I was just joking with them like, “you guys have been every where I been lately, whats up with that?”

Then I started to wake up. Not just wake up suddenly but slowly and I realized that my breathing was different. Inhaling was short and exhaling was long, and the breath taking was like I was holding a whole note. I should also note that lately, for the past 2-3 weeks I have been sleeping with oxygen on at about .75 – 1 liter during the night time. When I realized that my breathing didn’t seem right, I kinda went into panic mode like what’s going on here. It wasn’t full blown panic but the htought ran through my mind and I was more aware of it. So of course I couldn’t go back to sleep and went downstairs to turn up the oxygen to 2 liters. Coming up the stairs I felt fine, not out of breath or breathing heavy or anything. But when I sat down to use to the bathroom, felt like I was going to do #2. I felt like I couldn’t take full deep breaths and then panic kicked up a notch. So I came to the computer, turn it on, got my nebulizers (inhaling medication) ready, albuteral and hypertonic saline (special salt water). Did a few chest stretching, both my arms on the door frame and pushing my body through the door. This is to open up your rib cage and give your lung some room to take in deep breaths. Worked on my colour bone muscle area cause thats where I usually tell if something is off too. So stretched the muscle around that area, top and back. That usually helps to alleviate the stress and tightness around that area. Since then, with the oxygen turned up, the neb treatment, I do feel better. My breathing seems like its back to normal and my anxiety seem to have calm down. My body feels like it’s taking in enough air so that I dont’ feel so fatigue.

During when I first woke up, my sister was up too, she was hot in the room where she was sleeping and coming out to the open room where there was air conditioning. She was aking why I wasn’t sleeping and I just told here that I needed to do a treatment. But in my mind, I was thinking about the dream and thinking that if my breathing gets worse, then I’ll have her take me down to ER. That was at about 3:19am, it is now 3:57am and she’s asleep, I’m feeling better. So I think it’s safe to say that I can go back to sleep in a few minutes from now.

I bring this up here in this blog because I wonder if my lungs and body being low on oxygen had anything to do with this dream. Now the dream was some sort of a recreation from something that happened recently, which most likely did not go the way my dream did. But my mind was recreating it with whatever information it has and just kinda got creative with it. At any rate, I wonder if it had any relevance to one another or was it just a coincidence? I can speculate and try to find connections but the obvious and important thing is I feel okay right now. My left upper muscle by my colour bone isn’t burning, both my lungs feels like it can expand a lot more now, my body doesn’t feel exhausted or fatigued, mentally I feel stable again. So all is good, and with that, a good night to all.

Posted by: Yang | August 8, 2009

June, July and parts of August 2009

Lately I haven’t been so good, as far as my health is concern. Probably not sick enough to be hospitalized, but not well enough to not feel crappy. Here’s what’s been going on with my respitory system, let me know what you think. For one, every now and then my lungs will feel tight and soar. It’s like they feel weak, not enough strength to take deep breaths. And then the next day, they will feel just fine. Funny thing is, if I keep on moving around, walking and keeping productive, then they feel fine. But as soon as I sit down and stay idle for a while, I start to feel all kind of symptoms with my lungs. Anything from soarness to short sharp pains, and even sometimes I have to take deep breaths to make sure that my lungs are still capable of doing so.

I was suppose to go to the clinic back in June, but I think it was too close to the last week of school so I opted out. Figured that if I wasn’t ‘sick’ then I didn’t need to go. But through out the month of June and July, there were several occasions where I felt like going to urgent care just to make sure that all is well. As I said earlier, these symptoms that kept on popping up was frustrating. I kinda came to the conclusion that maybe my lungs are just irritated right now, whats the term, exasperating, I think. What it means is that they are irritated, so they are acting up, which means I mainly need to step up my treatments. I do know that I have been slacking on that earlier back in June to almost mid July. Then just when things seem to just get better, the other day I caught a case of the allergy deal. My throat was itching, which caused me to cough up a storm. That lead to major headaches and super soar ribs. That lasted for about 2-3 days. Let me tell you, thats the last thing that I need. Is for something to trigger my situation into something more intense.

In all honesty though, I have considered going into the hospital for a week stay, at the very least. It’s summer, I don’t have a job commitment, I still have health insurance, I’m not feeling at my base, and plus it’ll give me a change of scenery.  But somehow, I haven’t made the decision to go yet.  Feels like I’m caught in some sort steal mate where I can’t seem to make up my mind. Hospital, or not hospital. I start to weigh the pros and cons and then never follow through with it. And with the summer break coming to an end here with only about a month left to go, I do need to come to a decision though. If not, I’ll have to chance it during work and use up my vacation/sick times. Which would suck if I could’ve just go in now. Perhaps the reason why I haven’t gone in yet is because I don’t feel that sick. Although I do know that a tune up right now would be a good prevention step for me. Or, maybe there’s just so much going on in my mind right now that because I don’t feel sick, my subconcious is preventing me from following through. Yeah, I think that’s it. Well, thats about what I can think of about my health at the moment. I’m sure if there are other highlights, I will post them up at a later time.

Posted by: Yang | May 7, 2009

Natural vs Pharmacuetical Medication….

Okay, so here’s another thought. A few years ago, I was told about some ‘natural’ ways to treat or cure CF, I forget which one. But in this case, I don’t suppose it matters. Let me know what you think.

I was at an appointment with one of my doctors and brought it up. The doctor pretty much just blew it off and said that it would cost too much and that my insurance would not cover it. Whether or not it was a possibility to look into wasn’t even discussed. To me, it seems like it was more of a ‘financial’ deal than a way to help treat me. And then when I brought up about the Australia deal, I was given a sidestep type of answer. Along the line of, ‘well, here we have this and that (the good things about this clinic)’. But my question was never really answered in a way that made me feel like my best interest was at hand. When I think about incidents like this, it frustrates me. So my question is, has anyone heard of any ‘natural’ ways to either treat or cure CF?

My regular meds are Albuterol, Mucomyst, and Tobi. Now Azythromyacin has recently in the last few months been added to my list of drugs. I make a mention of that because there is this particular doctor who from what I can recall, most, if not all of my visit with her, seems to be writing up some new prescription drug for me. It almost seems like she looks for every opportunity available to write up some drugs for me, whether it is for something that I actually have, like low vitamin D. Which makes sense. But for other things like ‘preventative’ meds – to me, that’s stretching it a little too much. I understand preventative steps are necessary, but isn’t that what Azythromyacin and my regular vest treatments are for? In addition to that, I’m rotating with the Tobi meds from month to month. I should also note that this clinic has a team of CF doctors, which I do see different one from time to time, depending on who’s available. And that’s why I bring it up because after having seen a few of them, this is the one that I can recall writing up prescriptions for me. Perhaps it’s me and my paranoia. But can someone shed some light for me. I would really like to get an unbias answer.

Don’t get me wrong, I am grateful for their service and treatments to help me with my CF. It’s just that sometimes, I feel like I’m being drugged up for the sake of being drugged up. Again, if you have some insightful advice, please do share.

Posted by: Yang | May 6, 2009

CF and Weather, What are the effects?

Just a thought, anyone with good resources on what kind of effect weather has on CF? The thought has been on my mind for a while now. But today was more apparent just because I was having to struggle to be ‘calm’ and not go into panic mode. Breathing was somewhat more effort than usual, yesterday was sluggish, and overall I’ve been more fatigued. Then it dawned on me, the weather here in Minnesota is changing. I know that in general, the transition from Winter to Spring can bring seasonal allergies for anyone. But what about people with CF? Aside from the seasonal allergies, are there other symptoms that are more specific to us?

Being in MN, where the winter times can be a perfect time for pneumonia, I try to limit my time outside. So that much I know about winter and the cold seasons (late fall to early spring). But when the warm weather is coming in, I’m still unsure about that.

On another note, I have heard that the coast line of Australlia is suppose to be a good place for people with CF. Has anyone heard of this or read it? If you have, can you provide me with some links or resources? What I’ve heard is that along the coast line, where the breeze from the sea (which has salt, obviousily) seems to help with the respiratory system. Again, any help would be greatly appreciated. Thanks!!

Posted by: Yang | May 1, 2009

Great Strides

I have some exciting news, earlier this week I decided to sign up for the Great Stride benefit walk for CF. It will be on May 17th, 2009 (Sunday) at 11:30 A.M, Downtown St. Paul, Minnesota. If you are in the area and are looking for a team to walk with, you can visit my site, http://www.cff.org/Great_Strides/YangVang

As part of a new found motivation to embrace my CF, this event will serve as a launching tool. Because this is my first time doing something like this, I really have no idea what to expect. I looked at the map of the walking distance and said to myself, “this isn’t too bad.” What I’m hoping for is that we’ll have good weather. Not only that, but that Team Hope & Courage will have a good team of walkers and financial donors to make this a success!! However, the most important part of this is that this occasion will serve it’s purpose to bring awareness and benefit to CF as an illness and to it’s patients.

That’s it for now, the weather looks bright and sunny, it’s a friday, and the weekend is suppose to be good too. I’m going to wrap up my treatment, go eat, help a friend move and enjoy the nice weather weekend. Who knows, fishing might be in the schedule too. If not, will definitely get to do that next weekend in Duluth for my sistes college graduation. Until next time, take a breath of fresh air and enjoy life!!

Posted by: Yang | April 29, 2009

Coming out of my closet…

As I mentioned in my latest blog that a lot has happened over the past year or so. I will try to touch base on some of the highlights, as they come to mind. The stories will most likely not be in chronicle order so I do apologize for that. I will try my best to put a date or time frame with the story as an attempt mark them for later compilation.

To start off, let me say that I have a fascination, perhaps even a passion for art. I do a little of many things; drawing, writing (poetry, hip-hop, and recently getting into spoken word), and computer graphics. By professional trade, I am a Graphics Designer. I’ve been doing that for the past 8 years until January 08, when the company that I was working for got bought up and everything pretty much went south from there.

For the past 2 years, I have been fortunate to have landed a few freelance projects here and there. Some of the works that I have done ranges from non-profit pamphlets, church brochures, business cards, logo, company ad, to musical artists. I enjoy what I do, and it allows me to meet new people doing it. Like every Graphics Designer out there, we would like to have a client base so that projects would be more consistent. But I guess that’s the nature of being a ‘starving artist’. Whether you’re a musician, visual, or any other type of artist, I think that’s true for all of us.

Having said that, I want to address something that has been sitting on my heart for a few weeks now. Ever since I met this friend of mine, her name will be Rogue in this story. She is a lesbian, a Hmong lesbian to be more specific. The reason why this is important is because over the course of knowing her, I have to come to admire her realness of who she is, and the challenges that she is willing to take from people, and especially the Hmong community. Being a person of the GLBT community is heavily shunned on in our tight knit community. To see her be this open, shows courage and strength – being honest with herself and to the rest of the world. And as I have watched her spoken word performances these last few times, I have come to admire her for her bravery.

With this new appreciation, comes a sad and heavy realization for me. All these years, I have always knew that I needed to accept and embrace my CF. And I thought that I did. But there was always this feeling that I wasn’t being 100% truthful to myself. I did not want people to know I have CF, especially if they were not close friends or family. My mentally was, I don’t want them to know I have CF because I don’t want them to treat me differently; for instance, letting me off easily for ‘health’ reasons. Or how about this, “oh, don’t carry this, it’s too heavy for you.” I mean, come on, I know my limits, if it’s too heavy, I’ll get someone to carry it. Otherwise, I CAN carry stuff to you know. Another reason is because in the back of my mind, I’ve always thought that when my time comes and I leave this place, I wanted people to be like, “what?!?, he had CF and we never knew? And he did all that (accomplishments, adventures, ups, downs, etc…) without any of us having to assist him? I just wanted to be treated normal, just like a healthy person. And especially to a romantic prospect, that was probably the hardest obstacle for me. Not only that, but a part of me still holds on to that mentality as well. But ever since this friendship with Rogue and seeing her having the courage to come out of her closet, made me realize what I have been lacking all along. All these years, I thought I had embraced my CF. Yes, I have accepted the fact that I have CF, but never have I truly embraced it and come out of my own ‘closet’.

This revelation was an eye opener; psychologically and emotionally. Psychologically because whenever I’m alone and there’s time to reflect, there seems to be a war within me about how to deal with my condition. I would be emotionally drained from the whole ordeal. There are many times where I just feel exhausted and fatigued. Not to mention the moments where my spirit just feels down and my heart is just aching to be comforted. How I have longed for an answer, for someone to come along and accept me for who I am. I’ve always accepted that my CF will be with me, but that if only I had a companion in life, it would make this burden much lighter. Sadly enough, that has been an obstacle for me til this day. It seems that I’m sabotaging myself every time, by not embracing my situation, my confidence was lacking. And my honest opinion, which may sound like a cliche, is that confidence can be a very attractive quality in a person. They may not be the model type, but if they walk with their head held high, speak with passion, and carry themselves with confidence, it would be difficult not to be attracted to that person.

Okay. That’s one of the many things that is on my heart as of late. I felt it was important for me to put that out there because of the weight of the matter. Being that it’s a fundamental element of what makes me ME, and how I will carry myself from this point on out. Any how, thanks for reading and I hope it makes sense. More to come later.

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