Stuck in a rut

I recently received an email by someone that I consider to be a friend in the CF community. We've worked together on a project that had us talking every week for about 3 months and I was fortunate enough to get to know her and her husband. I feel invested in her and was honored that she would reach out to me in this situation. Her writing is in blue with my response in italicized black. It's split up like a conversation so it's easier to follow:

I read your blog post today and I feel like it really spoke to me. Last month my doctors gave me a "new baseline" lung function of 59-60 FEV1 which was down from 80. I stayed pretty positive. After all, I felt fine and was able to run a bit. I sat down and made a plan for myself to keep working out to be able to run 3 miles.  Then life happened. I got called into the hospital to work 3 out of the last 4 of my weekends (she tried the 4th but it was my wedding anniversary).  The girl I job share with has 2 kids who have been getting sick and passing whatever it is around her household.  Although most weeks I still got 2 days off at some point, there were stretches where I worked 8 out of 9 days. I was/am exhausted and now, puny. I'm coughing all night. I get winded doing laundry...much less running.  

First things first, this IS NOT your new baseline. You will simply not allow it to be. You will make the adjustments necessary because the two most important people in your life is your husband and you (You're the most important by default since you are your husband's most precious treasure...at least that's what I tell myself regarding Mandi ;) ) Was the crazy work schedule happening before the "new baseline" or after? 

Life happens to all of us. There are seasons of no problems and seasons of nothing but problems. The trick is to maintain our level of commitment to our health, even at the expense of some things we love in life. When I get sick and life is crazy, I basically have "no life". I handle my "have-to-dos" (in your case work) and outside of that, it's all about my health. If I'm not working, I'm at the gym or doing a treatment. It's no fun, no fun at all. Frankly, it sucks. But, when I'm in the season I always think back on two things: How I felt/feel when my health wasn't my priority, and the about the promise I made to Mandi. I promised her she would never be alone. Ultimately, there is only One person who can keep all promises, but I'll make sure that I do everything on my end to make sure I stay true to my word.

I am so sorry that you are feeling the way that you do. I wish I could take it from you. I wish there was something I could do.

I guess I just don't know what to do. I got the "be proactive" lecture from my doctors and I've sent them an email asking what I should do.  I'm just frustrated because I feel like I can't win. Since my coworker has sick kids, I feel like saying "Sorry [name withheld] I can't trade you a day because I may get sick if I don't sit on my couch. You're going to have to tough it out." is so lame.  I'm not missing treatments, and I was exercising.  What more can I do?

Let me say what your excuse is actually, maybe not what she'll hear, but what's actually going on, "Sorry [name withheld], I can't trade you a day because I'm sick. I'm sick because my health is declining. My health is declining because I've been putting more into this job than into my health. I need to put myself first for at least a while and get back on track. You're going to have to make other arrangements.". That is NOT so lame. That's being selfless for your husband. I understand that she may have to find another job or spend (lose) money on different childcare, but frankly, it's either you or her. You'll be the one losing money (and other precious commodities) if your health continues to decline.

There are times in our lives when what we did before will not fit, or fix, the present situation. I lived for years doing the same amount of treatments and exercise all the while watching my lung function decline. I wasn't willing to adjust. I loved my job. I was good at it. I felt valued. I didn't want to give that up. The ICU and the threat of intubation quickly changed my frame of mind. Seeing a lung function in the 20's slapped me in the face. I new if I didn't change, I was going to die.

You're not there, but I don't want you coming even close to that.

My doctor suggested that I may want to try a less physical job...maybe at an outpatient clinic where the patients aren't as sick and don't typically have to be lifted or anything.  But there are no jobs around for that...especially not full time. We can't afford me not to be full time right now. 

I don't think the physicalness of the job is the bad thing (in fact, it could be good). But being exposed to sickness can drastically alter your course. I've never been as sick with non-CF sickness as I was for the past year. I have a little girl who loves to give kisses, and I don't turn them down. I catch what she has almost every time. It's been hard. I'm trying to make adjustments, like washing my hands more and less kisses, but it's real hard. However, I know she'd rather have a living daddy who doesn't kiss her as much than a dead one not kissing her at all.

As far as the job situation, all you can do is to keep your eye out. Also, I'd rather see YOU make the decision to switch jobs, go part time, change careers, etc. than you being forced to change because of a decline in health. 

I realize now that I'm reading this over again, I'm kind of dumping a lot out there. Sorry.  I just wanted to see if you had any ideas. 

Listen, I'm always here for you. Always. You're one of my faves and I actually hurt a little bit reading all of this. I wish I had the answer. All I can do is share with you what I've learned over the years with my (good and bad) choices and you have to take it from there. 

Please never, ever hesitate to reach out.

I'm glad to hear you're doing so well! Your baby girl is adorable by the way. I like seeing all her cute fb pictures. :)

Thank you. Mckenna is just very fortunate that she has a smoking hot mom who passed down half of the genes ;)

**Update: She has been focusing on nothing but work and treatments/exercise for the past couple of weeks and is starting to feel much better. Sometimes a "boring life" is just what we need for a while!!**

My CysticLife "Job"

Here's another question I get asked quite a bit, and until now, have kept the answer between me and the person asking the question. I figured that it's asked enough though that I should just put something here on RSBR in case any of you are wondering the same thing.

I always hesitated talking about this publicly, because I don't want any of you thinking that I'm somehow self-promoting or asking you to give me a pat on the back. I don't want any of you however ever to think that I have any financial interest in bringing CysticLife to the community and want to make clear my motives - to make an immediate impact on the lives that were born with the same genetic disease that I was, no more, no less. Anyway, hope this clears some stuff up for some of you.

For you. CL is your "job" even though I feel sure you don't look at it this was. How do you make money from this? Do you take donations ? I'm sorry if too personal. You help so many with all of your knowledge and your responses are so quick - I was just wondering if donations are what keep it going?? 

CL is my "job" in that I devote well over 40 hours a week to it, but I do not make a single dime. In fact, my family "lost" money last year running CL.

CL has a for-profit arm (the website) and a non-profit arm (grant program and educational materials). Every dime we make through the website, promoting surveys, videos, etc, goes directly to our web developers salary. If we don't generate enough business to cover his salary, then we cover it.

For our non-profit arm, 100% of the money taken in goes to support our educational materials and grant program. We don't even allow any of the money to be used to run CL. We do take donations, however, due to an issue with our 501c3, we've had to freeze that for now. I pray we will be back up and running shortly.

Most of our donations came from private donors who appreciated what we're doing. I'm hoping that continues so we can continue supporting the CF community.

Germs at Work & The Best Compressor in the World!!

Had another great question thrown my way yesterday that I thought I would share as I'm sure that many of you have had similar thoughts or been in the same predicament.

I have a question for you...I totally respect your opinion and would love it if i could ask for it I have a little girl with CF I am looking at accepting a position in the ER...I will be going into rooms and registering them into the system. Do you think this would be putting her health at risk? I have posed this question to everyone at the hospital and they are of the opinion if I am taking the necessary precautions, I should be ok. The reason I am looking into this is because the hours work so that I can still stay home with her during the day. AAAAHHH....help???

I know CFers that work in the healthcare field and they've all been told the same thing as well - Do your best to protect yourself and use common sense. I wouldn't be too worried about it momma. Sounds like a great opportunity.

This was recently said on CL and it relates to your question...

"I work on a trauma floor and we have tons of sick people there. to avoid me bringing it home to my little cyster and fibro i avoid all contact with them right when i walk through the door and my shoes never see the inside of my house."

Could always do that if you'd like to be extra cautious.

Also, I worked for a couple of years in a homeless shelter and there was more sickness in that place than you could shake a stick at. My doctors gave me the same advice that I started with - Do your best to protect yourself and use common sense.

Hope that helps!!

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Also had another question from a momma concerning a compressor and my thoughts on the Mobilaire that I use. This is one of the most common questions I get, so I figured it wouldn't hurt to post this as well.

I saw on an old thread on CL that you use the Mobilaire 50 psi compressor. A few other friends either have it or are using it. So I am also polling them. What are your favs and not so favs about it? We will also have the VIOS or even the old Pro Neb Ultra for travel, but day to day is the Mobilaire worth the investment? Our clinic is supportive in writing the script since we have gone through so many PARI machines...

As far as a compressor...after I blew through 3 PARIs in 18 months, I decided that enough was enough. I went ahead and splurged on the Mobilaire and I haven't looked back since. It makes a WORLD of difference. The biggest thing the treatments take away from us is time. This compressor gives some of that time back. It literally cut my treatment time in half.

I travel with mine as well since I travel so often and it really affords me the opportunity to fill my travel days with stuff that I need to get done because I don't have to be at the hotel for hours on end doing treatments. It is a bit heavy to lug around, but for me it's worth it.

If you're looking for a compressor for day-to-day home use, honestly, this purchase is a no-brainer!! I couldn't encourage you enough to get the Mobilaire.

Favs - It's fast, effective and durable
Not favs - Wish it were lighter and less bulky for travel, but that would probably cut down on the power it has.

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New Insurance...In an Old Kind of Way

Mandi started a new job last week and with that came new insurance. I've been on COBRA since we got married but have yet to make a claim on it. They may come after me for some meds that were tabbed to my old insurance, but that's only because we got 17 different answers to just one question. The questions was simple in nature, but seemed impossible to answer by anyone that we spoke to. The question was this: "When does my coverage end?". That's simple enough right? We were told 60 days, 45 days, 30 days, 14 days, immediately, whenever the paperwork is filled, whenever the paperwork gets processed, etc. Finally (we think) the answer is that my insurance ceased the day we got married. Again, we're not sure, but then again, it sounds like the powers that be aren't either. We got COBRA just to be safe and we didn't want to have a lapse in my coverage.

The great thing about Mandi's new job is that I'll have the same exact insurance that I had under my mom. I'm hoping that will limit the number of battles that I have to fight with them as they "know me". But, as we all know, insurance companies rarely pay without a fight. It will be very interesting heading into today as I have a CF appointment plus I have meds to fill. It's always a little nerve wracking when switching policies and today will be no different. I hope that it's a smooth transition though and I won't have to spend hours upon hours on the phone with these guys.

I guess the first order of business is figuring out what my new policy number is :)

Top Ten Reasons To Get Married: Financial Benefits

Here goes, the number 5 reason to get married:

No.5 - Marriage brings financial benefits

There are numerous financial benefits associated with matrimony. For starters, there are tax breaks for married couples as well as for families. Getting married might also mean getting access to things like her premium health insurance plan. Like it or not, society is designed to make life easier for married couples. If you're single, you're out of luck. That's another argument in our top 10 reasons to get married.

This one rings very true to Mandi and I. We don't have anything set in stone as of today, but we're working on getting her a job with great benefits, including health. As of right now, I'm considered a disabled dependent by the state and am therefore still covered under my mom's insurance policy. That all ends the day I tie the knot. Fortunately we have up to 18 months of COBRA to fall back on if need be, but we're hoping to hear back about a new job for Mandi this week. Let's keep our fingers crossed and the prayers flowing!!

Check out the intro to this list here.

Check out the number ten reason here.

Check out the number nine reason here.

Check out the number eight reason here.

Check out the number seven reason here.

Check out the number six reason here.