CF Happens

Sometimes in life, CF happens…pun intended.

recent posts

  • That Struck A Nerve…(And A Lung Update)

    Well hello y’all…here I am again to give an update on my stubborn body. My body is very complicated and body that likes to throw curve balls all the time. I make my doctors use their degrees to the fullest extent! Buckle up…

    I have been dealing with my hands going numb, mostly at night, for over a year probably. It has gotten much worse in the last few months. I wake up multiple times a night with my hands throbbing in pain. I then have to sit up, most of the time stand up, and let my arms hang down until the throbbing stops enough to be able to lay back down. Rinse and repeat ALL night long. I already get up multiple times a night to pee, thanks to taking blood pressure meds and simply being 45 and premenopausal. haha

    Once I’m up and moving in the morning, my hands are much less numb, although it takes some time. In the morning, grabbing a cup and holding my morning pills takes patience. Also, when I squeeze my breathing treatment meds into my neb cups, it’s uncomfortable.

    I saw my primary doctor today about the hand numbness. I’ve had enough of it and need sleep! We decided that I would try the nerve pain medicine, Lyrica. I have avoided taking all nerve pain meds so far, even with having the nerve sheath tumor in my back that was ultimately removed, obviously. This numbness and throbbing pain in my hands is very uncomfortable and hurts. I’m now willing to see if the nerve pain med helps because I’m pretty miserable at night.

    If the Lyrica doesn’t help, we’ll start with finding the source of the hand numbness and throbbing pain. The first step will be a nerve conduction study and an EMG. The nerve conduction study and EMG that I had for my left thigh numbness and pain was very uncomfortable.

    Now to answer common questions I have gotten about the hand numbness:

    No, it is not carpal tunnel. This is most likely from something being compressed in my neck. It is ONLY my hands that go numb, not my arms and shoulders. The neurosurgeon that did my back surgery already did a cervical and thoracic (neck and upper back) MRI to check for more nerve sheath tumors before my back surgery, around October of last year. There were NO other tumors. So no, it is not another tumor causing issues and nothing to do with my back surgery. There was nothing alarming on those MRI scans. This has NOTHING to do with me having CF. Except for the fact that I’m just rare in general. Just like the genetic disease, cystic fibrosis (CF), duh. haha. I think that covers the questions I’ve already gotten from friends and family.

    QUICK LUNG STATUS/UPDATE: I’m finally on the tail end of whatever virus it was that tried to take me out. My asthma has been quite the butthead the last few days. I’m super tight and breathing treatments really don’t give me any relief. Also, the last few days I have been getting out of breath super easy with little activity. Much easier than my liking, but that’s a given. I’m letting it be for now and not asking for anything like antibiotics and/or prednisone. I’m trying to give my body a break and time to really get over whatever this virus is/was. Thankfully my pulled chest muscle is much better. Every once in a while, if I lean a certain way while sitting, I still feel a rubbing/popping where the pulled muscle is/was. That’s a lot of fun…NOT.

    SIDE NOTE: my blood pressure was high at both of my doctor appointments today, yearly gyno appointment this morning and primary doctor this afternoon. We are going to get back to checking my BP regularly at home again. I got away from checking it once it finally got lowered and stayed steady with the 2 BP meds. It’s probably elevated for a few reasons. One, being that I’m so out of breath. My heart is working a little harder pumping to compensate for my crappy lungs. They always check my BP right when we get into the exam room after I just walked back to the room. Secondly, pain can cause your BP to go higher. Ok, I think that sums everything up. haha

    Until next time…

  • 2 Weeks Of IVs Complete…But…Hit With A Viral Thing…Yay Me

    I completed 14 days of IV Cefepime (2g IV push every 8 hours) on Monday. Well…I did 40 of the total 42 doses because I was over it. I’ll tell you why I was over them in a second. haha. My final weekly labs that were drawn on Monday and they were good.

    Unfortunately, I felt like I got hit by yet another Mac truck on Friday, with 3 days of IVs left. It is viral with body aches, feverish but no fever, fatigue, etc. Of course, I developed a lovely fever blister/cold sore because of the virus being activated in my body. Ouch! When you take antibiotics it kills the bad stuff along with some of the good stuff that your body needs to fight off infection in general. This is the reason I was able to get hit with a virus after 9 days of antibiotics. Antibiotics are for bacterial infections, NOT viral infections or fungal infections.

    That brings me to the reason I didn’t do my last 2 doses of IV’s. I knew that me feeling crappy was viral and not bacterial therefore adding another week of antibiotics would do nothing. I am not advocating for not finishing ALL of your oral antibiotics or IV antibiotics. You should always finish ALL of your antibiotics because if you don’t, your body will basically make it to where that antibiotic will not work in the future. For instance, if you start taking antibiotics and start feeling better, DON’T stop taking the antibiotics just because you’re feeling better. No no no! Keep taking them to get the full effect and to kill all the bacteria. Had I still had multiple days left of antibiotics, I would have finished IVs. Do as I say, not as I do. haha

    I asked my doctor for Valtrex to nip this painful fever blister/cold sore quickly because it hurts! Hoping it helps! I am finally feeling a little better than I was over the weekend, so I’ll take it.

    Almost forgot to update about this, how I don’t know. My pulled chest muscle is doing better. I still can’t lay on my left side in bed because it hurts too bad. I’m pushing through though.

    I think that about sums up the latest. I’ll keep you posted.

    Until next time…