Showing posts with label life with cystic fibrosis. Show all posts
Showing posts with label life with cystic fibrosis. Show all posts

Thursday, October 20, 2011

What a Lucky Person I Am

As I was leaving the hospital after the last of 3 medical appointments I've had this week I felt a huge wave of gratitude wash over me. It wasn't the weather- cold and pouring rain; nor the traffic which was stop and go all the way home. It might have been the chicken dinner that was waiting for us which cooked in the crock pot while I was out, but I'm fairly certain it was the fact that I have such awesome doctors.

Cardiology was first on Monday. They were a tad concerned because my blood pressure was on the low side, something that was the norm until the past 18 months. I was instructed to lower my blood pressure medication if I had dizziness or if my BP is consistently below 100 systolic. Otherwise, they are very pleased with how I am doing and encouraged me to keep up with the exercise and yoga.

Next I went to the CF clinic. Amazingly, my PFTs weren't down as much as I thought they might be, which was great news. My physician thought that there might be some residual systemic inflammatory response after my root canal/extraction adventure and that made a lot of sense. In addition, it's allergy season for me on top of the fact that I have let myself get run down over the past several weeks. Ten days of Levoquin and a month of inhaled antibiotic with more rest and exercise. I left with my instructions feeling a huge sense of relief that I wouldn't need intravenous antibiotics. Whew!

The third, and final, appointment was with my PH doctor. He'd like to try me on a once a day anti-PH medication instead of the 3xday pills that I'm currently on. Popping an extra couple pills three times a day isn't a big deal in the scheme of things, but the fact of the matter is that it's a challenge for me to remember that mid-day dose. Taking the pills with meals doesn't help me much because I often eat 4-5 times a day and don't stick to a 3-meal a day schedule. I did  buy a medication alarm which helps tremendously, as long as I'm within earshot.

So, one dose per day with the same (or possibly better) effects will be a huge plus. The down side is that there can be more side effects, but thankfully they are short-lived for the most part. I've had some muscle/joint aches on the increased dose but as predicted they did resolve within 2 weeks. There isn't any official data on how this medication works compared to my current one, but both the doctor and nurse thought that people tended to notice more benefit and did better on it. Sign me up! It will take several weeks to get insurance approval and receive the medication from my mail order pharmacy, but at least things are underway and I should have it by mid-November.

The doctor mentioned that there are several more CF patients who have been referred to him in the past 6 months, confirming his suspicion that this type of PH is indeed linked somehow to CF. This is an area that will need to be explored and studied and is certainly an area of CF medicine which will be expanding in the future as the population ages.

My feeling of extreme gratitude on the drive home was because my doctors (all 3 of them!) and I were able to figure out what was going on and - the best part- are able to treat it. Yes, I still need oxygen for strenuous activity, but for routine things and just strolling around I'm able to get by without it.  If not for this dream team of doctors and their (and my) persistence I might have continued to decline and nobody would have thought it extraordinary- after all CF and shortness of breath in a 46 year old- not a huge shocker.  I know there have been patients who came before me who never had an explanation for a sudden decline. I am incredibly thankful to have been given my life back and to have an answer to my sudden change in health. I am very lucky indeed.

Friday, July 1, 2011

Today's Your Birthday

I suppose the older you get it naturally follows that the calendar fills up with anniversary dates: someone's birthday, an anniversary of their death or how long it has been since you've lived in a particular place. Although the yearly markers can be painful or bittersweet, it is evidence of a life well lived, or so I hope.

It seems that each month now has several sad anniversaries in it. Today would have been Sandy's 30th birthday - something most people take for granted. It seems so unfair to have such a talented and special person not even make it that far. It definitely gives credence to the saying "only the good die young".

I don't know whether there is any awareness after death; I'd like to think so and know that Sandy would be honored by her memorial service tomorrow. Her closest friends, some food, drink and a tribute to who she really was - no religious mumbo-jumbo, no church service. Friends, shared memories and camaraderie. The important things.

Happy Birthday to you, Sandy, wherever you are. Thanks for being such an inspiration and good friend. You are greatly missed.

Friday, September 3, 2010

PFO No Go

After enduring one of the most torturous tests ever invented by a sadistic doctor, I got a call with Dr P's opinion yesterday. The cardiac nurse said that the results aren't finalized, but since the he is going to be away for 10 days she didn't want to leave me hanging. Based on the preliminary results, he feels it would not have any benefit to repair my PFO. Disappointing, definitely, but I'll wait for the final results before totally bumming out. In the meantime, I'll call the pulmonary folks and get some more details.

So, it seems like R2D2 and my portable tanks are here to stay. I wonder if I can mosaic the O2 concentrator?

Wednesday, June 30, 2010

ECHO.....ECHo....ECho.....Echo.......echo

Good news sometimes comes in strange packages, as in the lesser of two evils. "Hey Dad, I crashed the car. But- good news! I'm not hurt!", or, " Mom, I got a D in math -- but at least I didn't fail!".

My good news is that I may not need the oxygen permanently. The low oxygen saturations that I've been experiencing are most likely caused by a cardiac defect that can be repaired. Definitely the lesser of two evils: irreversible lung damage vs. small hole between 2 of the heart chambers. Did I mention that it can be repaired?

Patent foramen ovale, or PFO for short, is the medical term. Everyone has one before they are born, since babies in utero aren't breathing and receive oxygenated blood from the mother. The body, efficient mechanism that it is, shunts the blood from one side of the heart to the other, bypassing the lungs. Why use something that isn't working? After birth the foramen ovale closes up and the infant's lungs start doing the work. Rarely one won't close up and will need to be repaired, or in my case it has re-opened due to higher pressure in the lungs from the chronic disease.

I had an echocardiogram (echo for short, an ultrasound of the heart) on Monday and got the call from the nurse yesterday afternoon: I have a PFO. I was ecstatic! I doubt she expected my reaction. A heart defect requiring surgery? Sounds bad, right? Maybe, but it can be repaired and I may not need to deal with the oxygen issue just yet. Someday, but at least not right now.

When I exercise or lie flat my blood is shunting from one atria to the other through the PFO and neither getting rid of CO2 nor picking up new O2 in my lungs. Hence, the low O2 sat levels and shortness of breath. Once the PFO is repaired all should return back to normal. It almost feels like a miracle to me, since I was preparing for a new phase in my life, needing oxygen for activity and sleep. Not the end of the world but something that would be limiting and add complications to daily activities, to be sure.

I'm waiting to hear back from the nurse who will be setting up an appointment for me with a cardiac surgeon. I'm anxious to have this over with and get on with my life, hopefully less short of breath and with a bit more energy. I can't even express my gratitude to my doctor who decided to check this out, when it could have easily been written off as CF progression. I feel like a huge weight has been lifted. Good news, indeed.

Saturday, April 24, 2010

Perseverance

Sometimes when you are waiting for a certain outcome it pays to turn a blind eye to whatever you are looking for. Distraction is a good ally and time will always provide perspective, even if it doesn't give you the results you want.

After 4 weeks of exercising routinely I do notice my stamina and strength have improved somewhat. I've been able to increase my leg weights by a pound and my arm weights by 2, so that's something. Day to day the changes are too subtle to be able to take note of, but over a month there is a discernible difference. I'm still needing supplemental oxygen, but at least I haven't leveled at the depressing plateau I'd been at. I may need a little extra help, but I can still crawl back up the hill.


Thursday, April 8, 2010

Oxy Moron

Also known as the driver who brought my O2 compressor yesterday. Clearly, he missed the Sensitivity Training class when it was offered.

Tuesday evening I had an exercise tolerance test to document the need for oxygen during exercise. Instead of the super-duper test I've done in the past on the treadmill with increasing grade and speed, they had me do a 6 minute walk test which consists of walking back and forth in a hallway as quickly as possible for 6 minutes. I felt a little bit like a duck in a shooting gallery going from one end of the hall to another, but it must be a frequent occurrence in the PT hallway at MGH because nobody even did a double take. I hauled ass, sweated like a dog and my O2 sats dropped to an unhealthy 83%. Matt, the pulmonary PT, was not pleased. Neither was I.

After he explained the risks of having a low sat for extended periods of time he said I was definitely going to need oxygen for activity and he wanted me to keep my sats over 90%. Ok, not a problem. He was very sweet and said he was sorry. Nah, it's fine, I replied. I was prepared for this. Staying healthy is the most important thing and if this is what I need to do it, then I'm ok with it. He gave me the encouraging speech that this may well be temporary, just as my lungs recover from the latest infection and round of IVs. Could be in a couple months I can stop using it, but on the other hand, I shouldn't be disappointed if I need to continue with it. Oh yes, I'm very zen about it, I don't have any expectations and will just wait and see. Even I was impressed at how well I was handling it.

That is, until the guy delivering the equipment showed up the next day. I have the good sense (after the fact, anyway) to realize that I probably would have had the same reaction regardless of his behavior and attitude, I know I was reacting to the situation more than his demeanor. It's so much easier to be angry with a person than a situation over which I have no control.

First off, the driver got lost and was quite annoyed at the maze that is our neighborhood. I can absolutely understand that, it is aggravating. But he kept talking about it, again and again. He then proceeded to huff and puff this big compressor and several smaller oxygen tanks up our 4 front steps, which looked like it took quite a bit of effort on his part. After his reaction to getting lost I figured I wouldn't tell him they needed to go up to the bedroom on the 2nd floor!

He started to explain about the cleaning and maintenance and I jotted down a few notes. "You don't need to do that, I have everything in the packet". I was probably being overly sensitive but his tone was definitely a bit sharp. "What about a more portable tank for when I walk/work outside?" His reply was: "I'm going to get to that, you have to let me tell you about this first". Whoa. My eyes teared up. "Do you have allergies or something?". Yeah, that's definitely it, allergies.

When he realized I was upset his tone softened and he started calling me "sweetie". Gag! That just made me cry more. "Is this difficult for you?" Hm... what do YOU think? I couldn't even speak at that point for fear of totally losing my composure. What an idiot: I'm 45 years old and you're bringing an oxygen compressor and portable tanks into my house. Now why in the world would I be upset???

Clearly uncomfortable, he went through the rest of his spiel (without interruption from me, I might add) and then asked if I had any questions. Nope, I'm good. Now get the hell out of my house. His parting line was: "when you get refill tanks, you better give directions to the driver, 'cuz they're probably going to get lost".

I should try to have some compassion for this guy but at the moment I had trouble accessing it. We do have something in common, though: there isn't a cure for stupidity, either.


Sunday, March 28, 2010

If You Don't Have Something Nice to Say..

...It's better not to say anything at all. At least that's what my parents always told me, and I guess I was unconsciously putting that into practice here. It's not that I've been unhappy or feeling negative, or even that I didn't have any nice things to say. I wasn't feeling well physically and that seemed to overshadow any of the other good things going on in my life and I wasn't able to put anything to writing without feeling whiny. So I kept my mouth shut!

After the 2 weeks of IV antibiotics in December, which left me feeling pretty well, I was able to enjoy about a month of good health. I got back to my usual exercise routine, but within days of hitting my exercise goal of 40 minutes on the treadmill with 30 minutes of 2.5% incline I caught a cold. A lingering, annoying cold which never really left me. I thought maybe some sun and warm temps in AZ would help it move along, but that was not to be. I felt even worse out west. Ok, so maybe it was some allergy to a desert flower? Yeah, sure, that had to be it. I'll feel better when I get home. Not so. I was short of breath on the treadmill, had trouble even dragging my suitcase on wheels and couldn't get much of anything done. Two weeks and some bleeding from my lungs later I figured I better check in to Hotel MGH again. My quickest turnaround ever, a mere 3 months, something many other cystics struggle with routinely, but a new thing for me. Round 2 of me vs. stenotrophomonas and proteus.

Fortunately, the antibiotics and rest did their trick. After a week I was feeling markedly better: no more bleeding, less coughing and the shortness of breath was receding. A little oxygen on the treadmill and I was feeling like superwoman. Yeah, baby! So begins the rehab process.

I'm trying to learn from past experience that it's best not to rush back into everything at once. The mind is willing but the body unable. Joe has been very sweet and patient so it's just my own internal pressure that I need to struggle with. I have to wear oxygen on the treadmill, which is hopefully temporary. I have a new toy, an oximiter, which I place on my finger to test the level of oxygen that my blood is carrying at any given time. Over 95% is normal, and below 90-91 is too low. When some one's lungs are not functioning adequately the blood doesn't get fully oxygenated and isn't able to transport enough to supply the cells with the nutrients they need. This causes the feeling of shortness of breath. So the supplemental oxygen helps to keep the blood saturated enough to feed the muscles and other tissues. My doc and I are hoping that as my lungs continue to heal and the inflammation goes down I won't require the little extra boost, but only time will tell. There's nothing I can do other than wait and let my body do the work. I'll work on the things I can control, like resting, good nutrition and exercise, and let go of what I can't. Now I just need to keep in mind the things I can and can't control. To be continued.

Sunday, December 6, 2009

Fly Away, Cystic

The unthinkable has happened. Since we met, I've been preparing myself for this, knowing it would be the biggest blow of all, but the preparation made not a speck of difference. How could it have? I never truly believed it would happen.

Paul is gone. My longstanding cystic buddy. He was at the brink so many times and was able to right himself by force of sheer will, I honestly believed he would do it again this time. He had more lives than 10 cats. He was a cat. A cool cat. He hated water, being touched and was a finicky eater. In the end, though, he was just as human as the rest of us and had finally had enough. He went the way he wanted to: in the comfort of his home, in his favorite easy chair, with his devoted mother by his side.

How do you capture a person's essence with mere words? Paul could. Paul would have. I can't do it. He was a very caring person, at times confused by human relationships and interaction, but that never deterred him. He never stopped reaching out. He was an amazing support and teacher to those in the CF community, often contacting people privately to shed light on a question they asked. He had an amazingly quick wit, was able to find humor in almost any situation and made puns that I sometimes didn't figure out for days. He was one of the most intelligent people I've ever encountered yet never talked down to people. He had the gift of being a natural teacher and no topic was beyond his grasp. I often teased him that if it was physically possible, he would have been able to perform his own double lung transplant, he had researched it so thoroughly.

Another friend said it well: this is the end of an era. Paul was a fixture online, often holding court in the CF2 chatroom, entertaining everyone with his witty banter and offering support to those who needed it. I really can't believe he's gone and probably won't for quite some time.

The biggest burden of CF, for me at least, is not the daily treatments, the hospitalizations or even feeling sick, listless and short of breath; it's saying goodbye to those we meet along the way who touch us profoundly and become part of us through our association.

'Bye, Paul. I hope you know how many people loved you deeply and how many lives you touched. Thanks for being my friend and meeting me at the Terminal; I'll treasure that memory always.

Friday, October 16, 2009

Ellie

When someone leaves the earth I imagine there must be a huge splash followed by tiny ripples that widen and eventually reach everyone that person ever touched.

Yesterday I learned that a friend had died, not a few days or even weeks ago, but back in August. How could I have not known for so long? Yes, I had known she was sick and had surgery, but my old friend denial was working his magic and it never even occurred to me that she might not be with us any longer, though I hadn't heard from her in a couple months. We'd email, chat online or speak by phone and it wasn't unheard of for us to not speak for a month or so at a time. She was incredibly busy with 2 young children, a husband and having moved a couple years ago. That was why I hadn't talked to her, right?

But still, how could I have not known? Maybe, deep down inside, I did, but didn't want to acknowledge it. Maybe on some level I felt the small ripple wash over me, but it was too much to face. Better to keep busy and ignore the growing sense of unease.

After not seeing a new blog post from her in 3 months, I finally became concerned enough to check her facebook page and there I learned the dreaded news. Ellie had died back in August. She had emergency abdominal surgery in July and was quite ill afterwards, developing a serious pneumonia that never went away. She didn't leave the hospital.

We connected because we both have CF, and are mothers, though she had 2 adopted children who are quite a bit younger than my one. There are unique concerns when you are a CF mom and it is somewhat comforting to be able to voice them to another person who feels exactly the same way. It was Ellie who, as a former college admissions office employee, read over Wilson's first draft of his college essay and gave the feedback that it was one that most incoming freshman write: "an event that changed my life". When he heard that he changed his topic and was quickly accepted early admission to the college of his choice. Her feedback was invalauble.

Ellie was also the one who encouraged me to start a blog. She had one for a few years, and gave me the link to it one time. I'd shyly read it, feeling a bit voyeuristic, but intrigued. It's amazing to read someone's thoughts and daily struggles, things they might not necessarily talk about openly. When she asked me one time if I was reading it I sheepishly admitted I was. She laughed and said, "I gave you the link, its OK for you to read it- I want you to!" She was a wonderful writer, open honest and she had amazing insights into situations. She was brave beyond words and so loved being a mommy. Her family was her life.

Ellie was very supportive as W went off to college, and when I was in the hospital for 2 weeks during his freshman year she sent me a helpful book - Letting Go. Her concern and caring for other people was extraordinary, she always wanted to hear about the other person and what was going on in their life, despite some serious challenges in her own. Clearly, she was in the right field as a social worker!

I'm going to miss her laugh, her stories of how Michael and little Gabe are doing. I'm sad they didn't have longer to know this special person who was their mom, though I know Charlie is going to keep her memory and spirit alive for them. Rest easy, my friend, and know that I miss you and always will.

Friday, September 25, 2009

Re-Re-Rehab

No I'm not stuttering.

Most things in life are cyclical, from the seasons to the days to our moods and so forth, and I really do try to accept and enjoy the nature of things. One aspect of my life that I don't enjoy being cyclical is my health. Right now I'm on the upswing: it feels great. The Prednisone I took last month worked wonders (I *heart* that drug) and I was able to breathe much more easily. I was able to go from being a listless couch potato with no energy back to my spunky self.

I love rehabbing! It's so encouraging to be able to add more minutes on to the treadmill each week, or an extra set of reps with the weights. It doesn't happen overnight but any improvement is always a good feeling. This week I'm up to 35 minutes on the 'mill with 18 of that at a 3% incline. My goal is to be back to 30 minutes of incline, which will probably take 2-3 more weeks. It's so nice to feel energized after exercising, rather than feeling like I need to lie down and take a nap. Isn't that how exercise is supposed to be?

When I told Joe I am up to 18 minutes he said, "soon you'll be back up to 30", to which I replied, "yeah, then I'll get sick and have to start all over again".

Unfortunately, that's true. I'm not one to dwell on the bad stuff and I don't often think about getting sick, but I do admit to dreading the "next time". It's so discouraging to lose stamina and strength after working so hard to regain it, in addition to feeling sick. Ah, this is the fate of a cystic, I suppose. A cystic cycle. ( I sense a clever play on words here, but can't quite get it to work out. Paul?)

So I rehab. And get sick. And re-rehab. And get sick again. Then re-re-rehab. And so the cycle continues. That's life. For now I'm going to enjoy the upswing of and hope I get to stay at the top of the Ferris wheel for a long while. The view from up there is amazing!

Monday, September 7, 2009

Bad Cystic

We returned last night from 4 days at Joe's sister's house and oh boy is it good to be home! I don't think my own bed has ever felt so nice. It was a fun-packed, fast-paced good time, although exhausting. We saw 2 concerts, ate out at Reids, Fat Bob's Smokehouse, The Basket Factory, the concession stand at the concert venue, and my personal favorite: Cold Stone Creamery. My sister-in-law and brother in law are wonderful hosts; we had a delicious meal on the night of our arrival and they cheerfully put up with a house full of people despite the chaos.

One of my biggest flaws is not being able to keep up with my treatments when I'm out of my environment. I'm not perfect at home, but am extremely compliant- rarely missing a neb or vest session, dutifully taking supplements, enzymes and exercise on a daily basis. Somehow when I leave home I morph into this non-compliant person who thinks nothing of abusing her body for days at a time. True Confession Time: I didn't do one neb or vest treatment while we were gone. Bad, bad cystic.

Part of it is that I forgot my vest. Doh! I packed the machine, tubing and cord but left the jacket hanging on the back of my chair, which made the rest of the equipment pretty much useless. I did bring my nebs and compressor, but rationalized that while I was skipping my vest I might as well be really bad and skip the nebs, too. Yes, I'm well aware this is downright stupid. I know better. I also know it's going to take me a week or 2 to get back on track after this little holiday from reality.

I'm aware that when I'm on vacation I'm not as good about doing treatments and always vow that "next time" I'm going to be better about it. I suppose that as compliant as I am, there are times I need to take a break from reality and pretend to be a "normal" person, if only for the purpose of realizing that no matter how much I pretend, it'll never be the case. I'll skip treatments and then feel terrible for a number of days, all the while thinking: this was NOT worth it!

I know what I need to maintain my level of functioning: a solid 8 hours of sleep with the Bi-Pap, 2 full vest treatments a day with nebs, frequent, healthy meals -lots of fruits and veggies, plus at least 45 minutes of exercise. Time consuming? Yes. Pain in the ass? Yes. Impossible to do on vacation? No. A challenge, definitely, but nothing that isn't within my reach.


Memo to myself as I work to undo the hopefully-not-permanent damage done while away: no more vacations from reality- the price is too high. Sometimes I really piss myself off.

Saturday, June 20, 2009

Extra Effort

I'm up very early for a Saturday, which is usually a day to lie in bed and watch a bit of the news or perhaps do a little reading. Some good friends are having an enormous yard sale and I've promised to be there to keep them company- the yard sale starts at 8:00, not really that early, but I have my treatments to do before I can go out.

As much as we all try to consider life from another's point of view we are never really able to completely understand what others go through. Just as I can't imagine what it's like to be diabetic, to have to constantly monitor blood sugar levels and be aware of dietary intake, or have lower extremity paralysis or have suffered a stroke, I doubt anyone else would understand what it's like to need to do these treatments twice a day. Every day. Day in, day out, whether I feel like it or not.

I once was in contact with a physician who was an intern at MGH who had CF. He was 'in the closet' and didn't let anyone know about his illness. He said something that summed it up perfectly for me: No matter how hard everyone else tries or works, we have to do the same thing, with less energy and 3-4 hours less in our day due to treatment times. Yes! Some days when I'm feeling less than productive I need to remind myself that my day is shorter than everyone elses (in a sense) and no matter how motivated or energetic I am it doesn't make up for the time I need to spend doing treatments.

Yes, it is time well spent because it maintains my health, but that doesn't mean I actually enjoy it.

Lately, I've tried to consider my exercise as part of my treatment time in addition to the vest and nebs. I find that if I put it in that context I'm much more likely to be compliant with it. After all, it is just as important in terms of airway clearance. To use an analogy, it is like brushing your teeth but not flossing them (sorry to all the non-flossers out there!) Both activities are important maintenance which are most effective when used together. Sometimes when I'm a bit short of time, this morning for example, I'll just do the nebs and vest and perhaps try to squeeze in a walk later on. My goal is to exercise at least 4 times a week and for the most part I'm able to achieve that.

I've gotten a bit rambly here, my original point was that I need to get up 2 hours earlier than if I didn't have CF just to make it out the door on time. If I'm going out in the evening, I either need to: a) plan some time in the afternoon before going out to do treatments, b) plan on doing them after getting in, or c) skip them altogether. Skipping is a bad option because I'm going to feel worse the next morning. Just as not brushing your teeth one morning or evening won't cause all your dentition to fall out, skipping a treatment here or there won't kill me. In the short term I'll feel worse and it has the potential to become a pattern so I do try to avoid it.

Still only 24 hours in the day with more tasks to complete. I've got to remember this and be more forgiving when I'm 5 minutes late or can't get everything done that I'd like to. Amen!

Saturday, September 6, 2008

Cystic Fibrosis, Continued.

I've been very fortunate in that I lived a relatively normal life until I was 32. I graduated from college, had a job in Boston, got married, had a child and bought a house - all well before the age of 30! I was convinced that I was one of the lucky ones and that my attitude would carry me through life without having to deal with many health problems.

I hit the skids when I was 30 or 31, but was able to continue on working, being a mom and doing just about whatever I wanted to do, despite feeling pretty crappy. You can only ignore your health for so long before your body gives out... mine was finally fed up with being abused and I wound up in the hospital for 3 weeks and on intervenous antibiotics for 6 months. I had let myself get very, very sick. Denial is a beautiful thing!! This was a huge wakeup call. When I was discharged from the hospital my mom had to come live with us because I was unable to take care of myself and my son. This was quite a change for someone who was used to being very independent! I had to start doing airway clearance, taking IV medications every 6 hours and needed to rehab myself back to some level of physical activity. I began exercising. Eating really well. Making sure I got enough sleep. Being completely compliant with my treatments. And you know what? I actually got better. It worked! It was amazing to see that the changes I made in my lifestyle actually had a positive impact.

The social worker at the hospital convinced me that I needed to apply for disability, which I did, convinced that I would be denied. I took a 6 month leave of absence from work, knowing that I needed to give myself time to get better before I returned. I was amazed when I was approved for disability and decided (with the help of the social worker) that I would not return to work and would make my health a priority. I've never been sorry that I made that choice.

Sometimes it is hard, not working. After all, our culture is based on materialism, income, and nearly everyone else works. Its hard not having that in common with people. It can be awkward when I meet new people, when they invariably ask "what do you do for work?". I've come up with some flip answers to deflect the question, but it never really erases my uneasiness at being different.

I suppose its unrealistic to think that CF would NOT impact my life in just about every area: it does just that. Every decision has that factored in to the equation, making things that much more complex. I'm not complaining, there's no point, its my reality and I need to deal with it when things come up. Just one more speedbump in the road of life.