Vestibular Issues and General Update

     So yesterday was a really rough day.  About 45 minutes to an hour after I received my morning meds I got so nauseous that I almost threw up even though I was downing my crystallized ginger.  I asked for Phenergan (anti-nausea med) and soon was spinning, unsteady on my feet, with my legs shaking involuntarily.  Last time this happened in May of 13 I lost all motor control, couldn't sit up on my own, and left the hospital in a wheelchair, then proceeded to go into my third psychosis.  Understandably, I was scared and anxious.  I asked to see the ID doc who is overseeing all my medications and got told I should see the pharmacist instead.  I again persisted and asked for the ID doc that I had seen and was following me.  They said he wasn't on call, but thankfully my nurse called his answering service and spoke to him personally and even though he wasn't on call, he came and saw me.  

     He said that all the anti-nausea meds can have those neurological effects as they use the nerve in the brain to inhibit the nausea.  I will now be seeing an OT (Occupational Therapist) that I saw last time.  I am now struggling with constant vertigo and nausea, uneasy on my feet, and any change to my body at all (like when the nurse stopped my IV fluids and started my IV antibiotic) I spin like I'm on a roller coaster.  Thankfully we know what this looks like and I now know not to take any anti-nausea meds.  We tried a Scopalomine patch but that just made the dizziness worse.  I was told last time that meds like Anti-vert and patches and things simply trick the brain and don't allow it to heal the Vestibular Injury and adjust to the new signals from the body.  If you want to learn more about Vestibular Injuries you can Go to the Vestibular Website Here.

     Jordan came up last night as I was exhausted mentally and emotionally, couldn't walk by myself, and needed help advocating for myself.  Today our goal is to find out how much finishing out the IV antibiotics will cost at home.  We are to the point where we are simply going to do what's best for me and deal with the bills and financial aide issues later.  We trust God will provide as He always does.  This way I could also see Jord every day, my puppies, and have the support of family, friends, and my church family in Tucson.  Friends and family are still coming to Phoenix to visit, but it's much harder to do that then to help me in the same town.  

     I just saw the ENT again.  I absolutely love him.  He worked at Maine Medical Center in Portland, ME.  He went to medical school in London (where they do all the medical stuff in the TV show "Sherlock"...the building Sherlock jumps off is that medical school!)  Then he did his residency in the states and has treated PCD and CF patients and knows about vestibular injuries--he was a member of the Vestibular website and has very good friends that are otoneurologists--the specialist I need to manage my BAHA and these symptoms I'm having now.  There isn't one contracted with my insurance and the one that doesn't take insurance charges $360/hr which is out of the question.  I spent two hours on the phone with my insurance company a couple weeks ago finding out what I needed to do to go out of network since they don't have anyone contracted.  If anyone knows how that insurance stuff works and if I can pay for a visit cash and submit the claim to my insurance, let me know! 

     Something else that's funny is that the ENT's name is Dr. Michael Knowland and the Pulmonologist (lung doc) that diagnosed me in North Carolina is Dr. Michael Knowles...apparently "Knowl" is a good prefix for doctors to treat me and know what the heck they are doing! :)  Pun intended.  ;)

     I was able to sleep last night, which was another concern of mine yesterday, so after getting a good night's sleep (a feat in the hospital!) and with Jord here and reminding me to take one thing at a time instead of trying to fix everything at once and get overwhelmed, I am much more stable emotionally.  A neat evidence of God's grace yesterday when I was so scared I prayed for Him to send someone and literally 20 minutes later, my friend Becca messaged me on facebook asking when she could come see me.  She came by, brought me rice cakes and Chick Fil A and hung out for a couple hours until 19 Kids and Counting re-runs came on.  Jord got here right as the new episode ended.  Jord also called me every little bit and texted me verses and really led me well and pointed me back to Jesus.  He's here to help me advocate and back me up and that in and of itself is a tremendous weight and burden lifted off of me.  

     Although a bad rxn to a med happened that we were all praying against, I know God is still on His throne and in control.  NOTHING comes to me that hasn't first come through HIS hands, that He knows is the best way for me to bring Him glory.  Although it is very difficult to walk this path, God is pouring out His grace reminding me of 2 Corinthians 12:7-10 "7 And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. 8 Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me,“My grace is sufficient for you, for My strength is made perfect in weakness.”Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

Thank you so much for all your love, support, and your many prayers offered up to heaven's throne on our behalf.  I can't wait to get to heaven and rejoice and see the rewards and crowns you all will have to cast at Jesus' feet for living out the one another's on this journey towards Mount Zion.  

In the Love of the Lamb,
Rachelle :) 

Sporting my new orange scarf from a sweet friend!

A picture of a flower I took in the garden downstairs 

     

ENT and Test Updates

PICC finally inserted after two hours, but it's purple! :) 

     Hey everyone...wow has today flown by and been crazy busy for me here!  Started off feeling good, then got super dizzy and nauseous from my infected BAHA so I gave in and took Fenergan (however you spell it) a powerful anti-nausea med, but it also knocks you out making you super sleepy.  A friend, Kate Fuller, who I met when she did a workshop on suffering at one of the first Women 4 Truth conferences I went to stopped by with a super sweet gift bag full of orange and purple things including a purple butterfly thingy that is brightening up my room!  :)  And another cute scarf and even a purple and orange sucker.  

     She left and then the lady came to insert my PICC line (which is a catheter that is inserted in your arm and goes to the artery right above your heart and can stay in a lot longer than a normal IV can...months if you need it).  Turns out it was someone who had been my Respiratory Therapist (RT) years ago (like way back in 2008) when I was first hospitalized here at Banner.  She remembered me so we struck up a conversation and had fun catching up while she was prepping everything...then the fun began.  Once your prepped, it generally takes about 20 minutes total to insert the guide wire, take pictures to make sure its in the right place, then insert the line and take the wire out...well the vein she chose that has been used before has a branch that goes up my neck instead of down towards my heart, so it took forever and she tried a different wire and I prayed and we moved my chin and neck and head and arm in a million different combinations trying to get it to go the right way.  Two hours later, it finally went the right way, but boy was my hand numb!  My joints were extra stiff and sore as it went two hours past my pain med time and I was absolutely starving since the nausea was gone and I had hardly eaten anything.

     Next, the pulmonary people came in to do my Pulmonary Function Tests (PFT's).  I took a video and pictures of that.  The goal is to find out how good your lung function is.  Like I said in my previous post, my FEV1 was 74%.  Today, even though I feel much worse than when I did those tests a month and a half ago, my FEV1 was at 79%.  Then I did my Albuterol nebulizer and did post treatment PFT's and my number went down to 78% and I had the sharp stabbing pain in my left side and had to wait a couple minutes in between the second and third test as I couldn't catch my breath.  The tech said that sometimes even though the number appears to be better there are other things going on. 

     Then the ENT doctor came in with a Physician Assistance (PA) student (cause I'm always a good case for student's to learn since I'm an "interesting patient"...good for them, not so good for me!).  He actually lives in Maine and practiced in Boston and has seen people with PCD before as well! He's semi retired and "does this just enough to remind myself why I retired in the first place...I wanted to practice medicine, not insurance."  AND he's a Christian...he saw my "Comfort from Romans" devotional by Elyse Fitzpatrick (which is great by the way!) and started talking to me about the Bible and his reading plan to read through the Bible every year.  He is very knowledgeable and wants to get me to a good doc that will follow me outside well like Dr. Cohen did.  I'm so thankful that God has surrounded me with multiple new doctor's that have actually seen people with PCD before!  I'm going to get a CT scan of my sinuses and he took a picture of my BAHA infection and will see me daily and compare and see what we can do.

       Last night I saw the ID (Infectious Disease) doctor again and he was excited that I was tolerating the Doxycycline.  He said something about my positive attitude and I replied with something along the lines of "Jesus is my hope and one Day I will have a heavenly body that doesn't wear out" to which he replied, "I completely agree."  I asked if he was a Christian and he said he was a Catholic Christian.  I asked if he would see me outpatient and he said he doesn't have the staff to monitor people so he only takes referrals from Pulmonary (lung) doctors, but he would be happy to take me if they referred me.  

     Jord and I are so incredibly grateful for all the love and support and prayers in this time.  It is challenging, but it is also neat to see how we have both grown from years past and to point to Christ's refining work in us.  :)  Someone gave Jordan a $50 gift card to QuickTrip...this is so helpful as we are not only accruing extra medical bills right now, but gas for Jord to come visit me and little things like me not being home to cook means Jordan is buying lunch out.  Kerstin is cooking some for Jordan and helping him take care of the dogs, but all those little things add up.  We are thankful God always provides and has already provided for us in so many ways...most of all providing the way of Salvation through Jesus so that I know beyond a shadow of a doubt that my suffering is not in vain.  

     I think that's the important stuff...I'll leave you with a wonderful music video by Joni Eareckson Tada singing a song called "Alone yet not Alone."  A video I have on repeat a lot right now.  :) 

Alone yet not Alone

Purple butterfly "thingy" from Kate :) 

Other goodies from Kate

Last paragraph of devotion from Romans this morning :) 

Sporting my Orange scarf with Butterflies

Sunset out my window last night :) 

ID Doc and BAHA Infected Again

     I saw the Infectious Disease doctor last night who I absolutely loved.  He is very well trained and did a Respiratory Infectious Disease Training at the National Jewish Hospital where they actually have a PCD Clinic now.  He has even seen other people with PCD!  That is indeed a rarity for me...there is something very comforting being under the care of a new doctor that is familiar with your disease and you don't have to spend time/energy educating them about specifics before they start treating you.  He is very knowledgeable about antibiotics, interactions, resistant bacteria, and all the complex things that concern me.  

     We started on an oral antibiotic called Doxycycline to cover the other bacteria growing.  The Pseudomonas is growing out now and we should know what drugs it is sensitive to tomorrow and the gram + could still grow out in the next couple of days so the treatment plan may change, but for now I've got some good bases covered to start with.  He was able to encourage me and reassure me about trying new antibiotics...I got a little emotional with him as trying new antibiotics is scary for me since the Vestibular (balance system) injury I had last time I was on IV antibiotics that led to my third Psychosis in May of 2013.  Jordan asked some good questions and I'm thankful he was here to clarify some things.

     This morning I saw one of the lung docs again and we are going to do Pulmonary Function Tests (PFT's) tomorrow to see how I'm doing compared to my baseline.  There is a number that tells you how good your lung function is called the FEV1.  At my appointment a month and a half ago that number was at 74%.  Over the last 4 years my baseline has gone from 85% to 74%.  "Normal lung function" is considered anything over 80%.  With how I'm feeling, breathing, and being so short of breath I am inclined to think my number will be lower, but there have been times when I felt horrible and it was up and times when I felt great and it dropped a few points.  

     My joint pain has been increasing with laying around...I woke up this morning and couldn't even move my left hand my joints hurt so bad.  I asked about getting a Rheumatology consult since I'm having such a hard time finding one that will take me on as a patient that is contracted with my health insurance, but there isn't one associated with this hospital and my doc said a consult is very hard to come by.  We are looking into getting some sort of supplemental insurance or something that will help ease this burden, but please pray for wisdom and direction and protection while I'm waiting to get treatment.  There is a pain med called Tordol (sp?) that has anti-inflammatory properties that they are giving me every 6 hours so I'm hoping this will help the sharp stabbing pain in my left lung/side/shoulder and also the joint pain.

     And yes, you read right in the above--my BAHA hearing aide post is getting infected again so my lung doc is ordering a consult with an ENT to deal with that and my sinuses that are also green and junky now.   

     Energy wise I am simply exhausted.  Just going downstairs to the garden (very slowly) and sitting outside for a few minutes, then coming back up I was leaning on Jord for support and feeling like taking a nap when I get back to my room.  

     One upside to the hospital is HGTV, the Food Network, and TLC which has the Duggars on from 19 Kids and Counting so I'll get to see Jessa's wedding air!  The little things, right?  :)

Well, my wrist and hands are hurting typing so I'm gonna sign off for now, but hope you all have a great Sunday afternoon!  Thanks again for all your prayers, love, and support.  Jord and I really appreciate it and most of all I am thankful for my sweet Savior, Jesus, who sustains me every step of the way and has given both Jord and I His precious peace from above that transcends all human understanding.  

In His Mighty Grip,
Rachelle :) 

Hospital Update

     As most of you know I am in the hospital in Phoenix at Banner Good Sam on McDowell.  Now that I have my laptop I will be doing updates on my blog if you want the latest since it's easier to just type it once and everyone that wants to know what's going on can go to one place and then I don't have to expend energy answering questions and emailing and placing posts on facebook.  :)  

     So here's the latest:

     I'm waiting to see the Infectious Disease doctor today and waiting on my cultures to show what specific types of bacteria I'm growing (probably won't have enough details til Monday) and then we can get a treatment plan from there.  We know that I am growing two different types of bacteria--gram negative and gram positive.  This means I will at a minimum need two entirely different types of antibiotics.  If the bacteria is resistant to certain antibiotics, which it has been and will be to some things, this narrows my options.  Then, on top of that, there are a lot of things I can't take because of allergies or adverse reactions like psychosis (I know not all of you understand what this is so I will be doing a more in depth blog post explaining this...but for now basically I lost all touch with reality and was hallucinating and alternating between super anxious/manic and depressed/suicidal) that we definitely want to avoid.  

     There is a process called "desensitization" in which they take an antibiotic that I am allergic to and give me small doses under very close supervision in the ICU until my body will tolerate it.  We won't know if I need this until we see what I am growing and what my antibiotic options are.  I'm on one antibiotic right now hoping that it will at least start to take care of one type of bacteria.  

     Visitors are welcome anytime as I have a private room.  However, due to RSV/flu season NO CHILDREN UNDER 13 are even allowed in the hospital.  Also, because of my lungs, please take caution and don't wear smelly soaps/perfumes/cologne as those smells give me immediate chest pain.  Since I am in "droplet/contact isolation" you will also have to wear a gown and mask while in my room.  :)  

     Specific prayer requests: Wisdom, clarity, and direction for the doctors in choosing antibiotics so that we don't have any adverse reactions, or if we don't have an option, that there is a plan to protect me as much as possible. 

Grace and peace for Jordan as he is home alone during this time...neither of us sleep well apart from each other, but he has the added burden of caring for the dogs, making sure I am taken care of, working to provide for us, and now taking care of the house.  I'm sure he would appreciate invites for dinner or the occasional real home cooked meal.  He's learned a little over the last 10 years, but he only lived on his own for three weeks before we got married and survived on Mac N Cheese and Grapenuts. ;)  

Spiritual focus, physical healing, and that I would get to share the Gospel of Jesus Christ with those around me.  There have already been some neat opportunities that I will share later, but I really should sign off and get some rest.  

     Thank you so much for all your prayers, love, and support during this difficult time.  We appreciate all of you!  

In His Mighty Grip,

Rachelle 

    

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 :) 

Prayers for Health

Hey everyone! I'm posting from my phone as we don't have Internet in our new place yet, but there is lots of health stuff going on...I have a doc appt at 330 and would so appreciate prayers for good communication, the correct tests to be ordered, and provision through insurance or other ways for any expenses that will likely come about after today's appointment. Please pray for wisdom and discernment as Jord and I wade through tests and appointments and decisions. Thank you for all your love and support! In His Mighty Grip,
Rachelle :)