My Melmoirs

I haven't lost my mind! At least not yet anyway.  I asked questions and by golly I got answers.  Soon after I wrote my last post, the Universe helped me realize that while some of what I've been experiencing is side effects, I'm ultimately not getting better...yet. My lungs are angry and I need more weapons to win this duel.  I saw my CF doc yesterday and she added prednisone to hopefully help my joint pain, arm pain, and sinus headaches. It also may even help me decrease one of the antihistamines, which would be awesome. She also added a third antibiotic into the mix, hoping the 3 antibiotics will work together to squash the bugs in my lungs and help calm things down. Lastly, she's adding another neb to help thin out the junk. It's a solid plan of attack. But the best part was when I learned the antibiotic I'm allergic to can also cause "irritability... hostility "  and "extreme fatigue". I knew I wasn't myself and ...

I may not be the sharpest tool in the shed, but normally I'm pretty sharp. I'm usually able to observe life and discern what's what. However, these past weeks have left me feeling unsure and at the mercy of wherever my body wants to take me.  I've been home from the hospital just over a week now and on IV antibiotics for almost 2 weeks. Generally, by this time most of the side effects have worn off but this time I'm still in side effect purgatory--to the point that I'm having a hard time differentiating what are actual symptoms and what are merely side effects.   When I head to CF clinic on Tuesday my doc will ask me "Do you think the antibiotics are helping?" and the truth is, I have no idea.  I know the 2 antihistamines I have to take around the clock are making me feel groggy and tired all  of the time, but maybe my body's tired on its own from fighting the bugs?  I know my horrible joint pain and arm pain have never lasted this long...

One of my nearest & dearest, Hannah, had the great idea to draw smiles on my masks. Genius! I was absolutely blown away by the response and support I received from my last blog post. Thank you from the bottom of my heart! Thank you for reaching out, for sharing my plea, or for being the change and starting a ripple effect. No matter how big or small, I believe all ripples reach further than we'll ever know.  Seeing people like you making your own ripples uplifted my spirits and brought my heart the most genuine joy. I felt like I was walking on air, which can be hard to feel after 5 days in the hospital, so I hope you realize the power YOU have to affect others. Oh and by the way, I'm HOME! They were able to get my rash under control, but unfortunately, the other antibiotic is killing my white blood cells. They discharged me last night under the stipulation that my blood work is closely monitored every few days. When I walked through the door Myles gave me an e...

Day 2 was filled with some ups and downs. Apparently I jinxed myself with my last post boasting about passing the desensitization. Later that night I found a few rash spots which are multiplying with each dose. I also had a bizarre stomach bug-like reaction which sucked.  Day 3's reactions: swollen hands & feet, along with intense joint pain in my wrists, hands, knees and feet to the point it's challenging to open a water bottle. Upward and onward. Every evening I go for a walk to stretch my legs because sitting in a room 24/7 actually hurts. I like to walk a long, less-busy hallway of the hospital known as The Pike. A stretch of The Pike has museum quality photographs showcasing "Healers of Our Time." I've walked this hallway hundreds of times over the years and yet never stopped to read the plaques, until last night that is. This particular one stood out to me (along with the beloved Hellen Keller): You would think that after being co...

You know you're in a good unit when they have kindness bulletins at the entrances! Day one is just about over and feels like it crept by at a snail's pace. I began my first IV antibiotic last night and after just one dose, I was up all night with chills to the bone (literally shivering with a Sherpa-lined cardigan and eleven blankets on me!), a fever, a migraine and nausea. Luckily there are other drugs to combat those issues and make me feel human again. Today I had my first-ever desensitization for my other antibiotic, which basically entailed baby stepping my way to a full dose by starting with a tiny does and slowly increasing over 4+ hours, using some antihistamines and Benadryl as well. I was also chained to my bed for 5 hours so they could monitor my heart and vital signs, talk about feeling lazy! I am happy to report that I did not develope a rash and can now take the heavy duty antibiotic that helps me the most. Party time! The first few days are alwa...

Spring and fall -- or more specifically, May and November -- get me every year. Like clockwork, I find myself in the hospital or on IV antibiotics. This November is no exception, although it's happening a little earlier in the month than I'm used to. I can't complain, I've had a good run. Sure, the past few months have had ups and downs: several cycles of varying meds, bouts of bleeding lungs, and some horrible headaches. But nothing severe, no blindsides. For that, I am extremely grateful! So what was my downfall you ask? Cold season. In a nutshell, my little guy and I both caught a gnarly respiratory virus back in September. I've been trying so hard to beat it ever since, trying both oral & inhaled antibiotics, but I just can't shake it. I knew it was time last week when I found myself unable to exercise, crying for no good reason and how hard my body was continuously working just to breathe.  The cherry on the sundae was earlier this week when M...

A while back, while referencing one of my blog posts, a friend asked me "When do you think of this stuff?!" The truth is, I'm always thinking about this stuff. Although there are pros and cons, my mind is always churning. I love taking life in and learning from it, I just can't get enough.  Case in point, the other day I was pumping gas when I saw a man pull up in an older car that had clearly taken a lickin' over the years. I began thinking about how hyper-judgemental today's society is. As much as I try not to, I still struggle with it myself.  At a glance, the man driving the car looked perfectly ordinary with a smile on his face. I'm willing to bet that if anyone talked to this man in a grocery store he would be judged on his words and personality. Yet when seen driving his car, I bet he's often instantly labeled with preconceived notions that have nothing to do with who he is as a human being. This made me feel sad, thinking about...