Do you ever feel overwhelmed to the point where you feel like you can't make good decisions? Do you ever feel like your running in place, and getting nowhere? Do you ever feel like you're trying to do everything for everyone, but you end up doing nothing well and ignoring your own needs?
Unfortunately, these feelings have been crowding my my life as of late... My surgery went well in May, but it's now two months post-surgery and my body feels broken. A few weeks ago I got the news that my MAC (Mycobacterium Avium Complex) is back. What sucks is that I never even got to a point where I could take a break from treatment. At this point I'm considered as having refractory MAC. This is such and evil and tricky (and acary) bug. The good news is that there is a new clinical trial (Arikace)starting within a month for people with Refractory MAC. I am first in line at my CF center to start this clinical trial. I'm hoping that this inhaled drug will beat this bug into submission.
The bad news is that I have been feeling lousy. To say that I have been fatigued is an understatement. I had a clinic visit last week. I got put on another antibiotic. That means that I now take 5 antibiotics a day. For 2 years I have been taking 4 antibiotics a day, yet the infection is still brewing. How is that possible? I am now taking inhaled Amikacin, Azithromycin, Ethambutol, Doxycycline, and Moxifloxacin. I have tried the power of "positive thinking" to no avail. Will this infection ever succumb? Why am I so, so unbeleivably tired? Will my belly ever get used to the insult of all of these medications?
After feeling really, really lousy for several months, I finally decided that I had to take some time off of work to get my health in check. I need to focus on my treatments (all 4 hours a day of them) and this clinical trial. I have pushed and pushed and pushed through...for the past 2 years of this treatment. I have told myself that I can do anything I put my mind to. Lately, my body has decided to revolt. I have finally decided to listen to my body, instead of trying to convince myself that all is well. Growing older with a progressive disease can be really, really hard...
I turn 37 later this month! That's life expectancy for CF, isn't it? I'm looking very forward to blasting past "life expectancy"!
14 comments:
That really stinks that you don't feel well cyster. Sounds like you've been working your butt off, yet still climbing uphill. That can be super frustrating! I think your decision to take some time off work is a wise one and I pray that it proves to be just what you need to get some of your energy back.
Happy early birthday!
Ronnie
:( sorry you have felt so bad and that stupid mac is back.
Praying for ya and glad you blogged again
I love you and I love how strong you are. I'm so glad we are family :)
Hey Cyster -
I am so bummed about this MAC business. Those stupi head bacteria are not listening.
I am glad that you have decided to take some time off work to focus on your health. I hope you get the rest that you need so that you can clear your body of stupi head MAC.
I wish I could hang out with you and do girly things like paint nails, watch fun movies and girl chat. Maybe we can Skype chat. I'm going in the hospital on Tuesday for my lungs, so I'll have lots of time to chat if you are up for it.
Love and Luck!
<3 Stina
So sorry you've been having a rough time! I hope the amakacin will help you! I think you are wise to take a break and get some rest...Take care :)
Thank God CF doesn't effect your mental capacity. You are WISE to make the sacrifice this is taking time off of work. That was a really smart move on your part.
Now, to keep fighting. You don't really have a choice on that now do you? To say it sucks balls is an understatement, I know. Try your best to dig out that 100% to keep kickin' CF ass.
Come on, girl. Do NOT give up!
xo
k.
Hi Stacey, I am sorry you are having such a hard time. The fatigue sucks, I have it from time time. Can I ask you a personal question? How do you cope with your CF and work and children? Are you not worn out? I am thinking about starting a family... and would love to hear your experiences... thank you
Gunhild
Hey Stacey!
Sorry to hear that your MAC is back and that you're feeling so tired. That is the frustrating part when fatigue sets in and you know you need to tone down life just a little bit. And that's certainly not easy when you work full time and have kids to tend to. But that's great that you're taking some time to heal yourself and let's hope that something works to get your MAC to settle back down. I can only imagine how frustrating that must be :( But hang in there cyster, we're all pulling for you.
Thanks for your comments and support. You are all amazing and I know how much you all "get it"! My stress level has decreased significantly since I've been off of work. I just hope my health takes an upswing.
Stina, a Skype date needs to be in the works! We'll polish our nails at the same time and talk counseling talk :-)
Kelly, you just have a way of laying it all out there...bluntly! I love you for that...
Gunhild, it's really, really hard sometimes. I have had to rely on my family for support and my husband also has to take the reigns more than I would like. I want to be able to do it all, but it's just not reality when you have CF. Babies and toddlers don't stop and give you a break when you need to slow down and heal. That's where my loved one's have come in. I seriously don't know what I would have done without them. I wouldn't change a thing, but I do wish I could have understood how challenging it would have been before leaping in to having kids. They add a lot of love to your life...that's for sure! They also give you a new sense of anxiety about your own health. You've got more people relying on you to be well. All in all, it's difficult...but isn't everything worth having in life a challenge? Please don't hesitate to ever ask me more questions about parenting with CF. I certainly don't have all of the answers, but I can at least share my experiences.
Annie, I love you, too, and love to have you as my cousin!
Ronnie, Leah, Kristi and Marcia...as parents who have worked and tried to manage life and CF I know that you understand. I can learn a lot from each of you :-)
Hi there! Being 40 with CF, I COMPLETELY get that getting older with a progressive disease like CF is really, really (oops, did I say REALLY again :-)) hard. It seems like the problems and the meds get more numerous but our energy wanes so keeping up with it all is just plain maddening sometimes.
You keep your chin up CF Cyster! God Bless. Sending prayers and positive energy.
Hi Stacey, hope all is well. Would love to read a post from yoy :o)
Hi stacey, hope all is well. Would love to read a post from you :o)
Gunhild,
I wrote an updated post just for you (and a couple others who were asking)! I hope you are doing well!
Stacey
Hi Stacey, thanks for posing :o) I am doing well, have been sick for a while, but better now, and my last culture was clean. Your post about retirement really made an inpact on me...as we have decided to try to start a family. I worry if I will be able to manage that and a job. Early retirement is not an option for me financial wise...
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