There's No Place Like Home

It still feels surreal to be home. As I settle back into my responsibilities and at my new house, there are times where I feel as if I am limbo and have to remind myself it's all real. Honestly, I am still healing emotionally and mentally from this recent hospital tune-up. As part of CF awareness month, CF can sure take a toll on us, and this time, probably more than ever or at least in a long time, I learned how draining it can be. As a heads up, this post is a little more thorough about why it can all be overwhelming for us with CF. Through it all, though, I found some ways to get by and pick my spirits up and learned some irreplaceable lessons (some too personal to share on here.) I still don't know all the answers, but everything has seemed to slow down since being home.

Just a few days ago, I returned home from another tune-up at the joint. Once finals were completed and I was moving, I could feel myself in the health danger zone, and then once settled in, my health crashed with once again body aches, nausea, and more. Before I knew it, it was time for my last check up from the last time (about a month ago) when I was very ill. I was unsure what was about to come up, yet had that pit in my stomach that knew I was going in. As instructed by my nurse beforehand, I packed up my bags, and then my bestie Kelly joined me for the trip to the hospital for the check up and a possible admission, which I was SO thankful for!

Everything happened so quickly--check up, then pfts--which plummeted to their lowest in a long time--got the news, got a room, then was on my way to IR for the PICC line placement. In all honesty, I was SO tired from the previous week, being ill, and then packing that a few people already thought I was on drugs! I'll say the sedation went much more smoothly since I was already half asleep as they wheeled me out! It must have been a miracle so I was less anxious before being put under.

Waiting time for PFTS. 

What going to IR looks like. Trust me when I say I was so dead tired and felt drugged. I couldn't even sign my name in a  straight line on the paperwork! HA!

The rest of of the tune up was filled with the usual--4 treatments a day with a respiratory therapist, triple the amount of medications, blood sugar draws before and after meals during the first few days and more blood draws, many visits by all sorts of practitioners and always being hooked up to an IV bag...it took a few days to start feeling back to my normal self, and then to surprise the nurses with all the energy showing ;) I will also bring up that a CF tune up is intense of itself to the point it can be difficult to find time or the ability to actually rest! I was not allowed to leave my room for the first couple days once the viral test came back positive with Type B Flu, then allowed to go in the hallways but forbidden to go to places with a lot of people (i.e. the cafeteria and church on Sunday.) I had to search for ways to be creative to get by. I found some new ways to make it all bearable--like bringing my hammock outside and finding a courtyard to hang it up at to get a break, discovered new exercises to do in my room, found ways to "cook" by combining ingredients at home with some salad bar ingredients from downstairs...ha it was an experience.

If you know me, you know I do not like the hospital beds! They are designed to move around on their own to prevent people from getting gout, which I wouldn't need to worry about! I'm talking one leg will be above the other, or one side tilted...all making me feel claustrophobic!! I remembered these beds from last time (you cannot forget them when you deflate them and sleep on a solid "hospital bed frame" for 13 nights) decided to find a way to hang up my hammock if they still had those darn beds. Well, here was the result of trying the hammock out! Ha! It ended up feeling awkward.The nurse was amazing and found me a cot to set up, and then I was able to set my hammock up outside! It was a win!

One set of pills

To give you an idea of the hospital food at times--when you ask for French toast....I learned that they give you one slice with nothing on it, with a possibility of some extra toastiness on the edges. ;) Ha I know I can be such a stinker when it comes to wanting good food, especially since I cook at home!

Which leads to how I was able to find some ways to find the good healthy food!  

As time progressed I had some surprises--or complications I should say. Admittedly, it was a very difficult 10 days as complications picked up with my PICC line, which led to it the arm becoming so swollen and painful that it needed to be pulled. I then had the ultrasound crew place an IV in the other arm, which thus led to more complications in that arm with once again pain and swelling--to the point where both arms could hardly move and felt as if a bullet went through both or had both arms broken. I don't think I had been in that much physical pain in such a short time period in a long time. It was emotionally and mentally draining, as other complications picked up as well, from intestinal pain that had me curled up--followed by numbness and tingling (had to have an EKG done--luckily no serious problems with that), to what must have been the worst migraine in my life. With all that happened, I ended up in many meltdowns. When I say this, I am talking ugly tears and trembling. I was forbidden to leave my room at times and was not allowed as much freedom this tune-up since I was admitted with the flu. There were frustrations which built up and then led to emotional numbness.

This last week, I remember being there, with bruises running up and down my arms (which are still there for the most part), with some portions bulging out, all swelled up from IVs. To say I was mentally and emotionally depleted was an understatement. I wept many tears that week--tears from physical pain, confusion, and disappointment. The day that would decide whether I would go home or not was one of those days. I went to do PFTs, a little nervous but confident they would go up a lot since I felt well. First blast--they were just about the same as when I came in. I wondered how, as I blew another. Same. Again and again--went up a few notches as my highest, a number which would make me shudder on any given day. I tried again and again--the most tries I have ever given in my life--as nervous and confused as could be. I was determined, but felt I lost a fight.
When it was all done, I had never been so nervous to hear from the doctor as I paced my room. I had it. I was done with almost consistent pain. Done with complications arising. Just done.

Post- PICC line removal (the bruises looked worse in person.)

They left the decision to me for whether I should go home or not, which left me heaped in a wreck. I felt healthy, but why were my numbers where they were? I was so tired of being in pain and also did not want to over expose myself to germs, but if I went home, would that mean I was quitting? What was the best decision? After some time, I knew I needed some help. I paged my social worker/counselor. She came shortly after. We talked it all through because as much as I pleaded to God, I did not receive an answer, and it was more than frustrating. She reminded me how at times we are to act by making a decision, then see how we feel about it. She had me silently make a decision, then left me a half hour to myself.

As she started to leave, I thanked her for accepting my page through the nurse to have her come over. She admitted she did not have her pager on her, but saw my PFTs and had the thought she should check up on me, then to find me on my couch in a hot mess. We looked at each other as she was about to leave, amazed as we agreed that our pages always go through.

I decided to come home, and felt peace. It was still difficult, and the emotional weight was still there. From it all, I have come to learn the importance of healing. Some things take time, as some things are not answered in the ways we expect, and memories remain vivid. Since I have been home, I have found time to do some of the things I love most--even the little things--from jumping on the trampoline, taking time to read a book, baking, running (I still had to hold my swollen arm still beside me), shopping, and spending time with friends and family. I still cannot do everything I would like to as my body is still healing, but I am appreciating what I can. Everything around me appears more vivid and green. My gratitude has been increased as the pain subsides and antibiotics are miraculously (even if they are slowly) doing their job. Sometimes the storms in our lives come and go, but as I did during my time at the joint, we can see God's hands through His tender mercies.

It may seem crazy to some during all the turmoil to feel the Lord's love, but I sure did. I learned more about Christ's compassion, His empathy, as He experienced it all. I honestly cannot pinpoint what I learned the most during this trying time, but I can say that I felt God's love in the darkest of times.

Hold on when times are dark, because then the light will seem brighter. Hold onto God's love and trust in His plan. Healing takes time, even when we feel we cannot do it all.

"Cheer up your hearts, and remember that ye are free to act for yourselves."-2 Ne 10:23 (the scripture that came up when I flipped them open while trying to decide whether or not I should go home.)

"Hold on. Hope on. Fan the flame of your faith, for all things are possible to them that believe."-Elder Jeffrey R. Holland

Also, I HAVE to say THANK YOU to my family and friends who reached out, as well as the random acts of kindness that were given by strangers and some physicians. I could not have done it without you!!

My mom couldn't come in when I was sick since she has elderly clients she works with for her job so it was too risky, but she brought by some of the most beautiful flowers and blackberries! Moms just know what to do. And don't worry, she was able to come by again later when I felt better.

So grateful for these ladies! Also, everyone who came in was pre-cautioned since they thought I still had the flu when the symptoms were no longer there (emoji  looking up at the ceiling) so everyone who came in wore a mask and /or a blue gown and gloves.

One guy whose wife has/had? :( CF ordered all the CF patients pizza from Pie Pizzeria!! He took our orders and I chose Hawaiian. It made such a difference to have good food, and it helped me feel better!

Let's please cure CF, shall we? ;)