Here are the links to the different TShirt sales I have set up so far. :)
Destroy PCD
Butterfly Hope with Bible Verse
Original Butterfly Team Rachelle
In His Mighty Grip,
Rachelle :)
Friday, April 10, 2015
Practical Ways to Help
Hello everyone!
So here are some practical ways you can help us at this time. :)
Here is a link to a "GoFundMe" account a friend set up for us today:
Here is a link for those local that can help with practical needs like rides to the doctor or meals.
I will also be setting up an online TShirt sale through "TFund". I have one shirt designed already and will be designing about 3 more. If you are local you can have it shipped to me at no cost, or you can pay shipping and have it shipped directly to you. The link for the one I have so far is:
Be on the lookout for the additional designs!
Yesterday was a special treat--I finally didn't have a doctor's appointment or test and was able to go out to my parent's house and with lots of help from Mom and Jen I was able to go for a short ride on Buddy around the yard. I cried as I talked to him...he could tell I wasn't my normal self (the saddle was a first clue because I usually hop on bareback and go cause I'm too lazy to saddle lol!) and he was totally in tune to my gentle leg cues and took the turns extra gentle and slow. He whinnied to me when I hollered to him when we were walking out and then he went to rub his eyes on me but I said, "Ah!" and he stopped and gently nuzzled me. We had some very sweet moments and riding is the best vestibular therapy ever!!! Here are some pictures of Buddy and I's journey together--I got him in March of 1997 right before I was officially diagnosed that summer in North Carolina. God knew I needed him all those years ago more than I ever could have imagined. I was crying and hugging his chest and gave my Mom a huge hug and thanked her for keeping him for me all these years. Next to my relationship with Jordan, family, and close friends, Buddy is the most priceless gift God could have ever given me on this earth. Although Crash and Roxy are right up there as well! I found a place that only charges $350 and helps you train your own dog to be a service dog so we are looking into getting signed up to do that with Roxy. She will be perfect for the job. :)
In His Mighty Grip,
Rachelle
Wednesday, April 8, 2015
Rare to the Nth Degree :)
Hey everyone!
So I haven't had a chance to do an update since I got discharged from the hospital. It's been pretty crazy trying to coordinate care, deal with insurance issues (so fun...not!), scheduling appointments, getting rides to those appointments, etc.
The biggest update is that I had another reaction to the IV antibiotic I was on several days after being home. It felt like my head was being crushed under water and my legs started with real bad tremors and my blood pressure was sky high. We discontinued all antibiotics and are working on getting the inhaled antibiotic approved to finish fighting the infection. Thankfully I was able to be on the IV for 10 days before having the reaction so it got the majority of the infection under control. My mucus is still thick and I am still having more pleuritic pain than normal so I feel like something else is going on but right now getting the vestibular and neurological symptoms under control are our top priority.
A recent thread on the PCD facebook page I am a part of asked about how bad pleurisy type pain can be. I was intrigued to hear other people's answers. Here are some of their descriptions: "It felt like my lungs were wrapped in barbed wire." "It feels like someone is holding onto your lungs and squeezing them." From someone with a lung function around 30% that is close to needing a lung transplant: "Pleurisy is the worst (lung) pain I have ever had." "I spent 8 days in the hospital because of it." "...is a 6'4" firefighter marine and it knocked him flat." I was astonished at these descriptions as I live with some type of pleuritic pain in my left side every single day of my life. That pain was radiating throughout my entire chest and up into my shoulders, which was what finally sent me to the ER...I guess that high pain tolerance thing is real. ;) When I was 3, I fell off of one of our horses and landed on my right hand. It bruised and I was guarding it a few days later so my Mom took me into the doctor...I'm told the doctor pressed on my hand to which I replied, "It hurts a little." They went ahead and xrayed it and it was broken. The doctor said I should have been on the floor in pain...later on my ear drum burst as a child and I didn't even complain to my Mom. I always use my high pain tolerance as a lead in to the Gospel with, "I'm thankful God blessed me with a high pain tolerance because He knew how much I was going to need it." I live with so much pain everyday that I don't even think twice about a lot of it, so when I see these threads on facebook with fellow PCD pals and their descriptions it takes me by surprise, but is also comforting to know that it's not all "in my head" as doctors and managers and people that can't "see" my pain that hides behind the smile and bubbly personality have made me feel in the past.
I saw a neurologist yesterday and after going over all my symptoms he says, "Well you definitely have issues." Tell me something I didn't know! :) I came out of that one appointment with 4 tests and a follow up appointment. He wants me to have an EEG (Electroencephalagram or test that measures electrical activity in your brain), an MRI of head and neck to determine cause of tingling down left arm, and nerve studies of upper and lower extremities to look into the tremors. Those tests have to be done on different days and he prefers a testing facility in Phoenix, so I will be needing a place to stay overnight and more rides around Phoenix. :)
A friend is coming on Friday to help me get some things organized. Top priority will be an online sign up so I can add rides I need to different appointments and people can sign on and see what fits into their schedule and that way I don't have to spend hours (literally!) on the phone expending energy figuring out last minute rides. It's been a little extra crazy for my family as my brother broke his ankle in three places playing kickball and had to have surgery yesterday so between the two of us we are giving Mom (and everyone else close to us) a run for their money...life's never boring in our family, that's for sure!
Candy is also going to help me organize a "Go Fund Me" account as many people have asked how they can help, and lots of them are far away, so this is one way we could greatly use help. Jordan's paycheck was only $200 last week from all the missed work, so we definitely have some immediate needs. Thankful to know we serve a big God and He always provides, but often He uses friends and family around us--for those of you that can help in this way, THANK YOU!! For those that can't--PLEASE do not feel obligated or guilty as there are many ways to help us, first and foremost being praying for us. God accomplishes much through the prayers of His saints and we greatly covet those prayers now--and He is answering. Jord and I are both in a great place spiritually even though life is kinda in turmoil right now. Funny how God usually shines brightest when we are at our weakest.
We are also going to look into a local fundraiser of sorts for the more immediate needs--thinking about getting some Tshirts made which would serve two purposes--raising awareness for PCD and more immediate funds to help with the immediate needs. I'm also working on plans for a big fundraiser/awareness next February. February 28th is Rare Disease Day and my birthday is the 23rd, and purple is my favorite color and Amythest is my birth stone so it makes perfect sense to plan something big and fun then, so keep a look out for those plans as they come together. :)
Finally, a fun statistic. As many of you know, Jord's Dad is a statistical engineer--I was talking to him this morning and gave him the stats of how likely it was my parents would even meet, let alone have a child with PCD and that out of the 500 in the world diagnosed, I am one of 9 that they can't figure out WHY my cilia don't work because they have all the parts and have good movement, it just does washing machine instead of stair-stepper. I recently signed consent for some research Dr. Knowles is doing on my genes, so it will be interesting to see what comes of that research. :) Anyway--ready for the statistical probability that my parent's would meet and conceive me???
So I haven't had a chance to do an update since I got discharged from the hospital. It's been pretty crazy trying to coordinate care, deal with insurance issues (so fun...not!), scheduling appointments, getting rides to those appointments, etc.
The biggest update is that I had another reaction to the IV antibiotic I was on several days after being home. It felt like my head was being crushed under water and my legs started with real bad tremors and my blood pressure was sky high. We discontinued all antibiotics and are working on getting the inhaled antibiotic approved to finish fighting the infection. Thankfully I was able to be on the IV for 10 days before having the reaction so it got the majority of the infection under control. My mucus is still thick and I am still having more pleuritic pain than normal so I feel like something else is going on but right now getting the vestibular and neurological symptoms under control are our top priority.
A recent thread on the PCD facebook page I am a part of asked about how bad pleurisy type pain can be. I was intrigued to hear other people's answers. Here are some of their descriptions: "It felt like my lungs were wrapped in barbed wire." "It feels like someone is holding onto your lungs and squeezing them." From someone with a lung function around 30% that is close to needing a lung transplant: "Pleurisy is the worst (lung) pain I have ever had." "I spent 8 days in the hospital because of it." "...is a 6'4" firefighter marine and it knocked him flat." I was astonished at these descriptions as I live with some type of pleuritic pain in my left side every single day of my life. That pain was radiating throughout my entire chest and up into my shoulders, which was what finally sent me to the ER...I guess that high pain tolerance thing is real. ;) When I was 3, I fell off of one of our horses and landed on my right hand. It bruised and I was guarding it a few days later so my Mom took me into the doctor...I'm told the doctor pressed on my hand to which I replied, "It hurts a little." They went ahead and xrayed it and it was broken. The doctor said I should have been on the floor in pain...later on my ear drum burst as a child and I didn't even complain to my Mom. I always use my high pain tolerance as a lead in to the Gospel with, "I'm thankful God blessed me with a high pain tolerance because He knew how much I was going to need it." I live with so much pain everyday that I don't even think twice about a lot of it, so when I see these threads on facebook with fellow PCD pals and their descriptions it takes me by surprise, but is also comforting to know that it's not all "in my head" as doctors and managers and people that can't "see" my pain that hides behind the smile and bubbly personality have made me feel in the past.
I saw a neurologist yesterday and after going over all my symptoms he says, "Well you definitely have issues." Tell me something I didn't know! :) I came out of that one appointment with 4 tests and a follow up appointment. He wants me to have an EEG (Electroencephalagram or test that measures electrical activity in your brain), an MRI of head and neck to determine cause of tingling down left arm, and nerve studies of upper and lower extremities to look into the tremors. Those tests have to be done on different days and he prefers a testing facility in Phoenix, so I will be needing a place to stay overnight and more rides around Phoenix. :)
A friend is coming on Friday to help me get some things organized. Top priority will be an online sign up so I can add rides I need to different appointments and people can sign on and see what fits into their schedule and that way I don't have to spend hours (literally!) on the phone expending energy figuring out last minute rides. It's been a little extra crazy for my family as my brother broke his ankle in three places playing kickball and had to have surgery yesterday so between the two of us we are giving Mom (and everyone else close to us) a run for their money...life's never boring in our family, that's for sure!
Candy is also going to help me organize a "Go Fund Me" account as many people have asked how they can help, and lots of them are far away, so this is one way we could greatly use help. Jordan's paycheck was only $200 last week from all the missed work, so we definitely have some immediate needs. Thankful to know we serve a big God and He always provides, but often He uses friends and family around us--for those of you that can help in this way, THANK YOU!! For those that can't--PLEASE do not feel obligated or guilty as there are many ways to help us, first and foremost being praying for us. God accomplishes much through the prayers of His saints and we greatly covet those prayers now--and He is answering. Jord and I are both in a great place spiritually even though life is kinda in turmoil right now. Funny how God usually shines brightest when we are at our weakest.
We are also going to look into a local fundraiser of sorts for the more immediate needs--thinking about getting some Tshirts made which would serve two purposes--raising awareness for PCD and more immediate funds to help with the immediate needs. I'm also working on plans for a big fundraiser/awareness next February. February 28th is Rare Disease Day and my birthday is the 23rd, and purple is my favorite color and Amythest is my birth stone so it makes perfect sense to plan something big and fun then, so keep a look out for those plans as they come together. :)
Finally, a fun statistic. As many of you know, Jord's Dad is a statistical engineer--I was talking to him this morning and gave him the stats of how likely it was my parents would even meet, let alone have a child with PCD and that out of the 500 in the world diagnosed, I am one of 9 that they can't figure out WHY my cilia don't work because they have all the parts and have good movement, it just does washing machine instead of stair-stepper. I recently signed consent for some research Dr. Knowles is doing on my genes, so it will be interesting to see what comes of that research. :) Anyway--ready for the statistical probability that my parent's would meet and conceive me???
3.3 in 100 QUADRILLION...that's 3.3 with 14 zeros behind it...
Mom and Dad...you should have bought a lottery ticket!!!!
I need to sign off and get some rest now but have lots of blog post ideas wondering around in this brain of mine so hopefully I'll get in some sort of routine and be able to keep you all updated. Hugs and prayers to all from Arizona!
In His Mighty Grip,
Rachelle
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| Got to enjoy a quiet Easter lunch with some friends |
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| View from my deck the other night |
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| Jenn put Landon's toy to good use |
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| Orchid from my Momma |
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| Jord found these on clearance! |
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| Getting some fresh air on the deck |
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| Roxy girl keeping me company |
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| Settling Mom's legs down :) |
Wednesday, March 25, 2015
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 :)
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 :)
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| Sporting my new orange scarf from a sweet friend! |
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| A picture of a flower I took in the garden downstairs |
Monday, March 23, 2015
ENT and Test Updates
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| PICC finally inserted after two hours, but it's purple! :) |
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. :)
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| Purple butterfly "thingy" from Kate :) |
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| Other goodies from Kate |
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| Last paragraph of devotion from Romans this morning :) |
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| Sporting my Orange scarf with Butterflies |
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| Sunset out my window last night :) |
Sunday, March 22, 2015
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 :)
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 :)
Saturday, March 21, 2015
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
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