Life Before the Bucket: Our Story
I stumbled across Adrian's story on the PCD Foundation FB page. :) Our stories are often so similar and there is instant connection. So check it out and pass the word along!
In the Love of the Lamb,
Rachelle
Friday, September 7, 2012
Thursday, September 6, 2012
Gallbladder Going "Bye-Bye!" and Little Sis Getting Married!!
I saw my GI doc this morning and had a long list of questions for him. I absolutely LOVE him even though he is far away. I learned a long time ago, especially for someone as "special and complicated" as me, good doctors are worth the trek. He has a fantastic bedside manner, is knowledgeable, and not afraid of my extensive knowledge and desire to understand what's going on biologically and how it all works together, which is critical to me. In my opinion and experience, if a doctor doesn't have a good bedside manner and won't give you the time of day or REALLY listen to you, I don't care if they are "clinically" the best doctor in the world, if they don't listen to you, how can they truly get a feel for what's going on? I know tests and data show up a lot of time, but in my personal experience, tests and data can be wrong. When I was being diagnosed, Dr. Carson said that if I was a blind cilia sample, they would have said I had no issues. It wasn't until they did further testing and put my symptoms together that we finally got a diagnosis...which we battled to get for 13 long years. All this to say, when you are chronically ill and complicated, you have to find doctor's you can trust and are willing to go the "long road" with you to figure things out and think outside the box at times. As Michele Manion of the PCD Foundation puts it, we have to find the doctors that will "look for Zebras in a world that looks for horses when they hear hoof beats."
So, long story sort of short, your gallbladder stores bile and condenses it, and then when you eat, it squeezes bile out to help digest fatty food. A normal functioning gallbladder will get rid of 35% of the bile...mine is only getting rid of 6%. Not good. He said it's inflamed inside and all the other tests I've had over the years would show up "normal" for the gallbladder. In 2003 I went to multiple specialists trying to determine the cause of my debilitating pain, but no one came up with an answer. The pain was eventually relegated to, "It is probably due to your possible endometriosis." I even did Lupron for 5 months which put my body into chemically induced menopause to try and help the pain, to no avail but added in all the lovely menopausal side effects...talk about making marriage interesting!! Laparoscopic surgery was never an option to "possibly diagnose endometriosis" because of the risk to my lungs. So we finally have an answer to my pain and worsening symptoms of nausea and lots of other "fun" stuff over the last 15 years. He said that my gallbladder would eventually stop working which would lead to emergency surgery, so we are opting to preempt that. Obviously with any surgery there are risks, and those risks multiply when you have the lungs and compromised body I do.
I have a call into my lung doctor to talk about pre and post op things to do to minimize risk to my lungs. In the past that has involved IV antibiotics the week before and the week after surgery. With it being an abdominal surgery, I obviously won't be able to use my chest percussion vest for a little while. I use it three times a day, four if I'm not feeling well like yesterday, and it is absolutely critical to help me clear the mucus out of my lungs. What I'm thinking might happen is that I will have the surgery at Thunderbird hospital where the surgeon I'm being referred to works out of and then be hospitalized for a few days after surgery at Banner Good Sam where my lung doctor can oversee my lungs and I can get "manual" respiratory therapy there. I still have to wait for the surgeon's office to call me and set up the pre-op consult to go over the anesthesia concerns, actual procedure, and plan of action for my lungs. With my port still being clotted and not taken out yet, IV antibiotics in and of itself would mean another PICC line unless we opt to get my old port out and put a new one in. My sinus infection has been getting worse over the last couple of days and is beginning to "feed" my lungs despite my aggressive rinsing and extra sets of treatments, exercise, and lots of rest.
The next couple of weeks are likely going to be filled not only with orchestration of surgery preparation, but also last minute preparations for my little sister's wedding on the 22nd...and weddings in general bring lots of chaos the two weeks before. I'm having to constantly shepherd my heart to remind myself that God was not surprised by any of this and His plans will prevail. I'm struggling most with contentment with where I am at with my health. All summer I talked about "when I get better" and back in June, September 22nd seemed a long way off. At Jen's bridal shower in July I was sure that if I was "good" and rested over the next couple of months, I'd be healthy and good to go by this time and ready to peform my "Matron of honor big sister duties". I know everyone wants me better, especially Jordan and the rest of my family, but God has chosen to prolong this trial for our good and His glory. I recently purchased Steve Lawson's commentary on Job...life often doesn't make sense and we wonder why God does things the way He does, but at the end of the day we have to recognize we are not God and our finite minds will simply never be able to understand an infinite God. All we can and are called to do is trust Him. I've heard many a sermon and read multiple books about how it's much easier to obey God than to trust Him because in our brains we feel like we can actually DO something. When you are called to simply wait and trust, I believe that's one of the hardest things to do because as humans, we all want to be working towards something or have some sort of direction to plan our lives in and when all we can do is wait and perservere, the illusion we cling to of being in control is shattered to pieces. We recognize how little control we actually posess over the course of our lives and struggling with health is one of the key things God tends to use to remind us of our need of Him. We can't make the cancer go away. We can't heal the brain injury. The side effects from the accident are there for life. We did all we could, but we couldn't save him/her. We are human and we are mortal and nothing brings that truth sailing home more than poor health.
I have to face the reality of PCD every day of my life. Friends and family can escape for a time as time marches on, but for me, there is always something to bring me back to reality. By His grace, and in His strength, Jordan and I are facing it head on, trusting Him with the outcome. We are doing our part (for me that means RESTING and leaving laundry, dishes, etc etc undone and for Jord it means taking on "extra" duties I have always done for us) and praying as we move forward with each decision. We are hopeful that removing my gallbladder will eradicate all the symptoms that have made me so miserable this summer. At the same time, we have to prepare our hearts for the reality that it may not fix all the problems and 15% of the patients with my particular "gallbladder dysfunction" don't experience relief. Normally percentages pay off, but in my case, rare and abnormal seems to be my specialty in life. :)
In the meantime, I will be working on a DVD for my little sister's wedding which I am super excited about! I am looking forward to seeing her ride (yes ride...she's riding her horse!) down the aisle to marry the man of her dreams and our "special dance" we "choreographed" when I was in high school and danced at my Wedding, avoiding foods that I have learned make me absolutley miserable (note to self: eating garlic bread with lots of butter at 8:30 at night is NOT a good idea!), orchestrate appointments, pre-op labs, and all the above mentioned craziness, and still live each day to the fullest, placing one foot in front of the other, running the race He has called me to run...by His grace and in His strength!
So, long story sort of short, your gallbladder stores bile and condenses it, and then when you eat, it squeezes bile out to help digest fatty food. A normal functioning gallbladder will get rid of 35% of the bile...mine is only getting rid of 6%. Not good. He said it's inflamed inside and all the other tests I've had over the years would show up "normal" for the gallbladder. In 2003 I went to multiple specialists trying to determine the cause of my debilitating pain, but no one came up with an answer. The pain was eventually relegated to, "It is probably due to your possible endometriosis." I even did Lupron for 5 months which put my body into chemically induced menopause to try and help the pain, to no avail but added in all the lovely menopausal side effects...talk about making marriage interesting!! Laparoscopic surgery was never an option to "possibly diagnose endometriosis" because of the risk to my lungs. So we finally have an answer to my pain and worsening symptoms of nausea and lots of other "fun" stuff over the last 15 years. He said that my gallbladder would eventually stop working which would lead to emergency surgery, so we are opting to preempt that. Obviously with any surgery there are risks, and those risks multiply when you have the lungs and compromised body I do.
I have a call into my lung doctor to talk about pre and post op things to do to minimize risk to my lungs. In the past that has involved IV antibiotics the week before and the week after surgery. With it being an abdominal surgery, I obviously won't be able to use my chest percussion vest for a little while. I use it three times a day, four if I'm not feeling well like yesterday, and it is absolutely critical to help me clear the mucus out of my lungs. What I'm thinking might happen is that I will have the surgery at Thunderbird hospital where the surgeon I'm being referred to works out of and then be hospitalized for a few days after surgery at Banner Good Sam where my lung doctor can oversee my lungs and I can get "manual" respiratory therapy there. I still have to wait for the surgeon's office to call me and set up the pre-op consult to go over the anesthesia concerns, actual procedure, and plan of action for my lungs. With my port still being clotted and not taken out yet, IV antibiotics in and of itself would mean another PICC line unless we opt to get my old port out and put a new one in. My sinus infection has been getting worse over the last couple of days and is beginning to "feed" my lungs despite my aggressive rinsing and extra sets of treatments, exercise, and lots of rest.
The next couple of weeks are likely going to be filled not only with orchestration of surgery preparation, but also last minute preparations for my little sister's wedding on the 22nd...and weddings in general bring lots of chaos the two weeks before. I'm having to constantly shepherd my heart to remind myself that God was not surprised by any of this and His plans will prevail. I'm struggling most with contentment with where I am at with my health. All summer I talked about "when I get better" and back in June, September 22nd seemed a long way off. At Jen's bridal shower in July I was sure that if I was "good" and rested over the next couple of months, I'd be healthy and good to go by this time and ready to peform my "Matron of honor big sister duties". I know everyone wants me better, especially Jordan and the rest of my family, but God has chosen to prolong this trial for our good and His glory. I recently purchased Steve Lawson's commentary on Job...life often doesn't make sense and we wonder why God does things the way He does, but at the end of the day we have to recognize we are not God and our finite minds will simply never be able to understand an infinite God. All we can and are called to do is trust Him. I've heard many a sermon and read multiple books about how it's much easier to obey God than to trust Him because in our brains we feel like we can actually DO something. When you are called to simply wait and trust, I believe that's one of the hardest things to do because as humans, we all want to be working towards something or have some sort of direction to plan our lives in and when all we can do is wait and perservere, the illusion we cling to of being in control is shattered to pieces. We recognize how little control we actually posess over the course of our lives and struggling with health is one of the key things God tends to use to remind us of our need of Him. We can't make the cancer go away. We can't heal the brain injury. The side effects from the accident are there for life. We did all we could, but we couldn't save him/her. We are human and we are mortal and nothing brings that truth sailing home more than poor health.
I have to face the reality of PCD every day of my life. Friends and family can escape for a time as time marches on, but for me, there is always something to bring me back to reality. By His grace, and in His strength, Jordan and I are facing it head on, trusting Him with the outcome. We are doing our part (for me that means RESTING and leaving laundry, dishes, etc etc undone and for Jord it means taking on "extra" duties I have always done for us) and praying as we move forward with each decision. We are hopeful that removing my gallbladder will eradicate all the symptoms that have made me so miserable this summer. At the same time, we have to prepare our hearts for the reality that it may not fix all the problems and 15% of the patients with my particular "gallbladder dysfunction" don't experience relief. Normally percentages pay off, but in my case, rare and abnormal seems to be my specialty in life. :)
In the meantime, I will be working on a DVD for my little sister's wedding which I am super excited about! I am looking forward to seeing her ride (yes ride...she's riding her horse!) down the aisle to marry the man of her dreams and our "special dance" we "choreographed" when I was in high school and danced at my Wedding, avoiding foods that I have learned make me absolutley miserable (note to self: eating garlic bread with lots of butter at 8:30 at night is NOT a good idea!), orchestrate appointments, pre-op labs, and all the above mentioned craziness, and still live each day to the fullest, placing one foot in front of the other, running the race He has called me to run...by His grace and in His strength!
Doing our dance at my wedding! :)
Living for Him and Loving Life,
Rachelle :) Tuesday, September 4, 2012
We Have one Answer!
Gallbladder! Just got a call from the GI doc office and they said the hidascan showed poor gallbladder function and he recommends removal. I see him on Thursday and will get more details, be able to ask questions, etc. Pray for wisdom as any surgery for me gets more complicated with my lungs. Have a friend here, so I will write more later!
Rachelle :)
Rachelle :)
Saturday, September 1, 2012
Wading Through Tests and Appointments
I knew this week was going to be crazy, but still wasn't prepared for how exhausted I have been the last couple of days after a week full of appointments and ups and downs. I haven't been able to nap lately and for three days in a row I have take two hour naps and groggily forced myself to get up afterwards. Talk about PCD hangover!
Re-cap of appointments:
1) Saw my ENT on Monday and I have a sinus infection but because we still don't know what's happening with the GI system and if it's a bacterial overgrowth or something else going on, neither my lung doc or ENT want to put me on anything for my "normal" stuff. So I've been irrigating like crazy but I think that's part of why I've been extra tired as well. Pray that the sinuses wouldn't "feed" into my lungs and cause a lung infection--it's the last thing I need right now!
2) Saw the Endocrinologist (thyroid doc) on Wednesday. Dad T. took the day off so he and Mom T. could be with me. So thankful for them!! On the upside, my thyroid levels had normalized in my most recent blood work. He said that back in June he was not surprised with how sick I was that my levels were off. On the down side, he is testing me for a super rare, not the best thing to have syndrome. He told me multiple times, "You don't want what I'm looking for." At first I was thinking, "I just want the answer" but when I got home and started looking into it more I really don't want what he is testing me for. I've had to pray hard to take thoughts captive and trust God's sovereign hand. In talking to Jacob, one of our elders, he reminded me that until there is something concrete, it's all "vain speculation." Been recalling to mind Matthew 6 a lot and repeating verse 34 "So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." I've read through that chapter many a time and my dear friend Candy and I have prayed through it together and reminded each other of its wonderful truth's over the years. She called Wednesday afternoon when I was in "freak out" mode and we were able to pray together and she reminded me of His truths once again. God is so gracious to always provide exactly who or what you need right when you need it. Candy was just calling to check in and "happened" to call right when I needed truth spoken to my heart the most. Thanks for always being there friend!!!! I'm so incredibly thankful for the sweet friends God has blessed me with--friends that are there when I need a shoulder but they also speak truth to my heart in the midst of the tears in a way that reminds me of His truth, especially when I don't want to hear it, but need it more than anything.
3) Had the gallbladder hidascan on Thursday morning. I had to fast for this test and lay still on my back for an hour. I was able to get up and move around, but then had to lay right back down for another 20 minutes while Sharon, the nuclear medicine tech who was super sweet and a gift from God, injected CCk into my body to simulate a fatty meal. It did what I was expecting--I got nauseous, pain, and felt generally miserable, and got a sinus headache to top it all off. The first hour was hard because I had to hold super still--lay someone with lung disease on their back and tell them to hold still and the first thing we want to do is cough up a storm. I had HGTV to help distract me but the last 20 minutes I was praying like crazy for God to sustain me and get me through. As always, He did. Was so thankful for Ingrid and Dena to be my "Moms" and take care of me! Ingrid had an audio book to listen to that was a collection of smells and all the memories that go with it. It talked about gardening with Grandpa and his smell and brought back so many wonderful memories with Papa and Grandma. It then talked about lilacs and describing spring--the perfect thing to keep my mind from straying to feeling nervous about the test. :) Dena was waiting in the waiting room when I got out and helped me out to the car and home. She made my shake to get something on my stomach, got me settled, did the dishes, and left me to do my treatments and rest for the afternoon until Jordan picked me up for my evening appointment.
4) Saw my Naturopath on Thursday night. He adjusted me again on my left shoulder blade from the fall and gave me some exercises to do to strengthen one of the muscles around the elbow to help that not hurt. I forgot about my left side being weaker and grabbed a gallon of milk out of the fridge the other day and was immediately reminded that it is still healing. We backed off some of my supplements and upped Vitamin C to help with the sinus infection. Like everything else, we can't really "go" in a specific direction until we have some concrete answers.
For Prayer:
1) That we would remember Matthew 6 and live today for today and not worry about the future that only God can see. It is tempting for all of us, but how much energy we needlessly waste over things that God has perfectly under control!
2) That we would be able to get some answers soon. I have to avoid certain foods for the Endocrinologist test for a week, so I won't be doing that urine test until this coming Wednesday. Some of the tests take two weeks to get any results so we won't know anything until my follow up appointment on the 18th. In the last week I've had over 20 vials of blood drawn for multiple tests for multiple doctors, so hopefully we should be getting some news relatively soon.
3) I see my GI doc on Thursday to follow up with the hidascan results and to talk about the next steps, which will likely include an endoscopy, whatever needs to be done for the gallbladder and ask other questions in light of what the Endocrinologist is testing for.
Re-cap of appointments:
1) Saw my ENT on Monday and I have a sinus infection but because we still don't know what's happening with the GI system and if it's a bacterial overgrowth or something else going on, neither my lung doc or ENT want to put me on anything for my "normal" stuff. So I've been irrigating like crazy but I think that's part of why I've been extra tired as well. Pray that the sinuses wouldn't "feed" into my lungs and cause a lung infection--it's the last thing I need right now!
2) Saw the Endocrinologist (thyroid doc) on Wednesday. Dad T. took the day off so he and Mom T. could be with me. So thankful for them!! On the upside, my thyroid levels had normalized in my most recent blood work. He said that back in June he was not surprised with how sick I was that my levels were off. On the down side, he is testing me for a super rare, not the best thing to have syndrome. He told me multiple times, "You don't want what I'm looking for." At first I was thinking, "I just want the answer" but when I got home and started looking into it more I really don't want what he is testing me for. I've had to pray hard to take thoughts captive and trust God's sovereign hand. In talking to Jacob, one of our elders, he reminded me that until there is something concrete, it's all "vain speculation." Been recalling to mind Matthew 6 a lot and repeating verse 34 "So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." I've read through that chapter many a time and my dear friend Candy and I have prayed through it together and reminded each other of its wonderful truth's over the years. She called Wednesday afternoon when I was in "freak out" mode and we were able to pray together and she reminded me of His truths once again. God is so gracious to always provide exactly who or what you need right when you need it. Candy was just calling to check in and "happened" to call right when I needed truth spoken to my heart the most. Thanks for always being there friend!!!! I'm so incredibly thankful for the sweet friends God has blessed me with--friends that are there when I need a shoulder but they also speak truth to my heart in the midst of the tears in a way that reminds me of His truth, especially when I don't want to hear it, but need it more than anything.
3) Had the gallbladder hidascan on Thursday morning. I had to fast for this test and lay still on my back for an hour. I was able to get up and move around, but then had to lay right back down for another 20 minutes while Sharon, the nuclear medicine tech who was super sweet and a gift from God, injected CCk into my body to simulate a fatty meal. It did what I was expecting--I got nauseous, pain, and felt generally miserable, and got a sinus headache to top it all off. The first hour was hard because I had to hold super still--lay someone with lung disease on their back and tell them to hold still and the first thing we want to do is cough up a storm. I had HGTV to help distract me but the last 20 minutes I was praying like crazy for God to sustain me and get me through. As always, He did. Was so thankful for Ingrid and Dena to be my "Moms" and take care of me! Ingrid had an audio book to listen to that was a collection of smells and all the memories that go with it. It talked about gardening with Grandpa and his smell and brought back so many wonderful memories with Papa and Grandma. It then talked about lilacs and describing spring--the perfect thing to keep my mind from straying to feeling nervous about the test. :) Dena was waiting in the waiting room when I got out and helped me out to the car and home. She made my shake to get something on my stomach, got me settled, did the dishes, and left me to do my treatments and rest for the afternoon until Jordan picked me up for my evening appointment.
4) Saw my Naturopath on Thursday night. He adjusted me again on my left shoulder blade from the fall and gave me some exercises to do to strengthen one of the muscles around the elbow to help that not hurt. I forgot about my left side being weaker and grabbed a gallon of milk out of the fridge the other day and was immediately reminded that it is still healing. We backed off some of my supplements and upped Vitamin C to help with the sinus infection. Like everything else, we can't really "go" in a specific direction until we have some concrete answers.
For Prayer:
1) That we would remember Matthew 6 and live today for today and not worry about the future that only God can see. It is tempting for all of us, but how much energy we needlessly waste over things that God has perfectly under control!
2) That we would be able to get some answers soon. I have to avoid certain foods for the Endocrinologist test for a week, so I won't be doing that urine test until this coming Wednesday. Some of the tests take two weeks to get any results so we won't know anything until my follow up appointment on the 18th. In the last week I've had over 20 vials of blood drawn for multiple tests for multiple doctors, so hopefully we should be getting some news relatively soon.
3) I see my GI doc on Thursday to follow up with the hidascan results and to talk about the next steps, which will likely include an endoscopy, whatever needs to be done for the gallbladder and ask other questions in light of what the Endocrinologist is testing for.
It's been a long, rough summer, but God continues to sustain us for which I am truly grateful. As with any trial, we are closer to the Lord than ever and Jord and I continue to grow and love each other more and more every day. Jord truly is a rare gem to treasure--he works long hours, then comes home and listens to me, shepherds my heart when I need it (which has been pretty often this summer!), holds me when I cry, encourages me, helps with house and grocery stuff, and continues to treasure me more than anything on this earth. So thankful for a man of God who is also a man of his word: he has stayed by my side through more sickness than health in our almost 8 years of marriage and words can never express how much I will praise God for eternity for giving me the man I am proud to call my husband. I love you honey!!!!!!!
Last summer, we went up to South Mountain for
a date. Was fun to just sit and look at the city--
we could even seen the planes take off and land
at the airport. :) Nothing like spending time with
my best friend!
Resting In His Everlasting Arms,
Rachelle :)
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