Update on Health and Living Life with Chronic Illness

     This last month has been hard--really hard at times.  A couple weeks before my birthday in February I caught a cold and then my BAHA post got infected and I was super sick on my birthday.  I finally got the right treatment and antibiotics, but on day 9 of the 10 day course, I started itching from the inside out--an allergic reaction to one of the remaining few oral antibiotics I could take.  Thankfully, I was far enough along the course of antibiotics that the infection was taken care of, but it will make future infections a lot more interesting.  Then a couple days after that we moved and I caught another cold which has then decided to settle in my chest and I am currently in a "lung exacerbation" or flare or infection.  I'm up to doing treatments 4 and even 5 times a day.  This last Sunday at church I started to sing along during worship and got into a coughing fit and had to use my puff inhaler and sit down and just listen for the rest of worship.  At the end of service (only about an hour and half later) my chest was feeling more "open" so I started to sing along with the closing song and had to use my inhaler again and ended up in the bathroom almost throwing up from coughing so much.  And yet in between all this, a new friend said, "but you don't look like you are sick...you look radiant."  I thanked her and explained a little about how if I'm in an extra sensitive mode or that comment is said in a certain way it can send me over the edge or act like a burr under my saddle.  In fact that sentence got its own blog post awhile back entitled Invisible Illness if you want more details on why that sentence can drive me bonkers.  :)

     Monday I had a scheduled appointment to talk about doing some tests for some other things, but ended up using it for the current lung infection and thus the process of trying to get this $6000 drug, Cayston, approved along with still trying to find doctors that take my insurance--which is a whole other story in and of itself.  All of this is absolutely exhausting, on top of having to cancel all things I had planned and not being able to do the things that I want to do.  It requires a constant heart shepherding and guarding of my heart by staying in the Word, in prayer, and watching lots of sermons or youtube videos and messages that help keep me focused on the bigger picture and the character of God.  Even with all these safeguards, it is so much easier to sin when you feel miserable in multiple ways, and of course that has led to more conflict with Jord and other members of my family, because lets face it, those who know you best get the worst of you a lot of times.  I've had to ask for forgiveness multiple times for taking my anger at my circumstances out on those around me...on top of being sick it's also PMS time so it's like one giant ball of emotion over here.  I also thought I might have broken my hand and had to have that x-rayed, but thankfully it's not broken, but its super sore and two of my fingers are buddy-taped now which is making typing interesting lol.  

     It's always hard to communicate what it's like to live with a chronic illness and it can be difficult when you have to cancel plans with friends and family and then you hear about what they did or see pictures on facebook without you...not because they WANT to leave you out, but the simple fact of the matter is that life goes on.  Just because I am sick--again--does not mean the world stops to cater to my needs, as much as I would like that at times.  It's not reality, but it can be a hard reality to accept, especially when we are prideful and don't follow Christ's example of humility, trusting that God's plans are best and that He KNOWS what we need to refine us to be more like Jesus.  It hurts when you feel like life and friends and family are "leaving you behind" in a way and you can't participate fully or in the ways you want to.  There is a grief and a loss that has to be felt and dealt with instead of just ignored.  In my PCD facebook group, someone posted a picture that said, "My new normal is adjusting to new normals."  It's so true--with a progressive lung disease things aren't going to stay the same and in time they are going to get worse--I can rest as well as I can and do all the things I "should" do to prevent infections and not get sick but the long and the short of my reality is that I will get sicker and one day I will die.  People have told me in the past that "I can't think like that" or that "I have to be positive and then you won't get sick" or "You are consumed with your PCD, can't you ever have a day without talking about it?" and lots of other things.  The fact of the matter is that everyday something hurts.  I don't have any "good" days like "normal" people.  I have "good" days for me, but my "good" days are nothing like a "normal healthy 31 year old woman's good days".  Right now my injured finger is hurting as I'm typing and my chest is tight and it's hard to breathe even though I just did my treatments an hour ago.  This morning I woke up at 5 because I had to go the restroom and when I went to lay back down my chest felt like it was suffocating me so I had to sit up and go do treatments instead of going back to sleep like I would have liked to.  When I drive, my ankle hurts from pushing the gas pedal due to whatever autoimmune thing is going on.  And today I had the only Rheumatologist in Tucson or Phx that I can find that takes my health insurance call and talk to me and say that I was too complex of a patient for her to take on (which I appreciate her knowing her limits and saying that up front!) and so now I will have to go out of network which is higher costs and I'm not sure if the docs will even work with my insurance company out of network.  I have needed a Rheumatologist since I moved back in December and have been working on this since the beginning of January and today that put me right back at square one, on top of dealing with phone calls and emails and messages to my doctor trying to get the Cayston approved.  

     I say all this not for you to say "poor Rachelle", but to give you a glimpse of a fraction of what it's like on a DAILY basis.  As hard as I try to forget about PCD and have fun days, I still have to take my meds and do my treatments and there is always a tell tale pain reminding my mind that wants to forget about PCD and all that comes with it that this sickly body is here to stay for the duration of life on this earth.  But that's where my hope lies--that this body and this life is not all that I'm living for.  If it was, I would never get out of bed and be depressed and like I've said before, If I wasn't a believer, I know beyond a shadow of a doubt I would not be here today.  Thankfully, my hope lies in Jesus Christ and His death on the cross in my place for my sin--for the anger I feel at being "trapped" at times, for grumbling and complaining, for being selfish and thinking of myself before others--all those things, Christ died for.  He lived a perfectly obedient life so that when I fail--and I will--God see's Jesus' record in my place--and He loves me instead of forsaking me and giving me the hell I deserve.  

     Where exactly am I with health stuff--here's a summary and what we would love prayer for:

*Cayston application for assistance to be approved and expedited so I can start this inhaled antibiotic and don't have to be hospitalized.
*Grace and strength and peace to love each other and be patient with each other as we navigate the health insurance industry
*Provision for the right doctors at the right time that we can afford
*And please pray for my sweet hubby who loves me so much and sacrifices so much to be by my side and protect and provide for me--as hard as it is for me, I've experienced first hand when he had his heart attack it is much easier to be the patient than to watch your beloved one suffer so much.  

Oh for those days when sorrow and suffering will flee away and we will enter into the joy of our Lord and Savior for all of eternity!  Come Quickly Lord Jesus!

In the Love of the Lamb,
Rachelle :)    

I had a buddy during one set of treatments this week when a friend brought lunch over :)