What a week. Even though I am recounting these events daily, it's simply impossible for me to express what's really been going on inside me. I just won't allow myself time to process the gravity of what I've been through. I've adapted so strictly to the art of pushing through that I don't even know how to be truthful to myself about pain and weakness and even fear. I don't want to take the time to slow down and fall apart. I just want to believe that it's going to work out, and move forward with life. All in all that is a good plan and I truly believe that it is part of why I'm alive today. At the same time, I'm starting to recognize it's flaws. My illnesses, pain, weaknesses, and fears may not define me, but they are part of me and have definitely played a huge role in making me who I am today. Maybe instead of denying these parts of me, I need to start owning them.
The title of this blog is All for Good. That came from my belief that God can use everything for His Good. I have always known that in some way for some reason and somehow, all that I have experienced and lived through (no matter how yucky) would be worthwhile because in someway Good would come to someone because of it. I have been content even peace-filled about that. Maybe there's even more to it though...maybe it's time to become a little more accepting and own what I've been through. I've realized that by denying these parts of myself, I've been denying Good God has for me. I should be experiencing everything in my life~the good, the bad, and the ugly. It's all adding to the complicated mess of a project that I am.
I don't want to become a whiner, but I at least must learn to be real with myself. I can't continue to push past everything. This week was real and I need to be able to admit that it was unbelieveably tough. Each day was so packed with painful, exhausting tests and doctors relaying overwhelming news. Looking back, I know the only reason I made it through was because of prayers. This is the gift of my life...I am ready to own it. I am thankful beyond words for every test, doctor, nurse, and experience that I had this week. As hard as it was, I still loved being there because it was obvious that they ALL wanted to help me.
So I guess this means when I lay down tonight, I just might cry a little when I think about having to say yes to a third bone marrow biopsy. I also might chuckle when I think about my leg muscle cramping during the sleep study and I was afraid LaTasha, the tech would think I was thrashing about wildly on the video. Then I'll smile when I remember how Dr. Olson lit up and hugged me when she saw me in the hallway on Monday morning for the first time. And all of these emotions and more will be okay because they are part of me...christian, daughter, friend, asthmatic, dog lover, teacher, congenital heart disease, sister, undefined illness, althogether & more...the real me.
Friday, July 29, 2011
Day Five~down to the wire
I woke up very early today...well, who am I kidding, I'm not sure if I really even slept??? This is it. As much as I want to stay here forever, as torn as I am about leaving with results pending~this is it. Our flight leaves Denver today at 6:10 and I'm pretty sure that I'll be on it. It's down to the wire and I don't only feel that sense of urgency within myself, but I feel it coming from Dr. Olson too. My schedule is jam packed today with everything else that she anticipates needing in order to diagnose me and develop a treatment plan. I approached the day filled with the clashing combination of anxiety and hope.
We completed the rental apartment check-out list, loaded the car, and headed around the corner to National Jewish. My first appointment was in radiology for a neck CT. It looks like the VCD is still cutting off my airway according to PFTs. The CT will make sure it is VCD and not damage from when I was intubated in the past. (The scan was normal - so it is the VCD I'm still fighting)
Next I had a Nutrition consult. Every doctor I've seen this week has been extremely concerned about my weight loss. My current weight is fine, but the problem is that the weight loss has been unintentional. Weight is something that I have never been one to talk about or point out (loss or gain) - on myself or anyone else. I'm just very uncomfortable with the subject. I've never been a huge eater, but gained weight like crazy anyway when I was put on such high doses of steroids long term. When I was finally off them in November, I suddenly started losing weight. I assumed that was the reason. Apparently there's more to it than that. They think it's a combination of natural loss and a possible adrenal insufficiency. The nutrionist and Dr. Olson talked to me about taking measures to not lose any more weight - how bizarre. They even connected it to impacting my illness. I trust Dr. Olson so much, but this one is definitely harder for me to grasp.
With nutrition concerns spinning in my head, I sprinted upstairs to the MIDC (minimally invasive diagnostic center) for my cosyntropin stimulation test which is the adrenal insufficiency test. It involved an IV and a lot of down time. Nurse Jennifer was administering the test but to my delight Deb (from Tuesday) was training her! They had to draw blood, inject cortisol, and draw blood again periodically. As time passed they would come in and out of the room to chat as they had time. Deb shared stories about crazy tunnels beneath National Jewish that led across Colorado Blvd and creepy chambers in the old TB wards. Seth, one of the nurses I had back in April & May even stopped in to catch up. I just adore these wonderful people. :)
I met with Dr. Musani next, an interventional pulmonologist. This meeting was informational more than anything. Dr. Olson wanted him to talk with me about the possibility of bronchial thermoplasty. It's a series of procedures over a six week time period where the doctor uses heat to reduce the smooth muscle in the airways of the lungs. This reduces their ability to constrict causing fewer asthmatic episodes. The problem in my case is that it is best suited only for patients with severe uncontrolled asthma, but are healthy in all other ways. My heart, sinuses, and high eosinophil count rule out the possibility of this treatment for now - but he said it could be an option in the near future.
On to rheumatology with Dr. Maleki ~ I really liked her a lot. This appointment was very long. She spent most of the time going step by step through symptoms of an autoimmune disease that she and Dr. Olson are looking at as a possible diagnosis for me. Churg Strauss Syndrome is so rare it only effects 10 in a million people. It presents as late onset asthma, heart defects, tingling or numbness in the extremities, and rashes. Dr. Maleki isn't certain that it fits me because I don't have the rashes. She's waiting for the bone marrow biopsy for more information. She ordered a few more labs and sent me on my way for the final wrap up with Dr. Olson.
We completed the rental apartment check-out list, loaded the car, and headed around the corner to National Jewish. My first appointment was in radiology for a neck CT. It looks like the VCD is still cutting off my airway according to PFTs. The CT will make sure it is VCD and not damage from when I was intubated in the past. (The scan was normal - so it is the VCD I'm still fighting)
Next I had a Nutrition consult. Every doctor I've seen this week has been extremely concerned about my weight loss. My current weight is fine, but the problem is that the weight loss has been unintentional. Weight is something that I have never been one to talk about or point out (loss or gain) - on myself or anyone else. I'm just very uncomfortable with the subject. I've never been a huge eater, but gained weight like crazy anyway when I was put on such high doses of steroids long term. When I was finally off them in November, I suddenly started losing weight. I assumed that was the reason. Apparently there's more to it than that. They think it's a combination of natural loss and a possible adrenal insufficiency. The nutrionist and Dr. Olson talked to me about taking measures to not lose any more weight - how bizarre. They even connected it to impacting my illness. I trust Dr. Olson so much, but this one is definitely harder for me to grasp.
With nutrition concerns spinning in my head, I sprinted upstairs to the MIDC (minimally invasive diagnostic center) for my cosyntropin stimulation test which is the adrenal insufficiency test. It involved an IV and a lot of down time. Nurse Jennifer was administering the test but to my delight Deb (from Tuesday) was training her! They had to draw blood, inject cortisol, and draw blood again periodically. As time passed they would come in and out of the room to chat as they had time. Deb shared stories about crazy tunnels beneath National Jewish that led across Colorado Blvd and creepy chambers in the old TB wards. Seth, one of the nurses I had back in April & May even stopped in to catch up. I just adore these wonderful people. :)
I met with Dr. Musani next, an interventional pulmonologist. This meeting was informational more than anything. Dr. Olson wanted him to talk with me about the possibility of bronchial thermoplasty. It's a series of procedures over a six week time period where the doctor uses heat to reduce the smooth muscle in the airways of the lungs. This reduces their ability to constrict causing fewer asthmatic episodes. The problem in my case is that it is best suited only for patients with severe uncontrolled asthma, but are healthy in all other ways. My heart, sinuses, and high eosinophil count rule out the possibility of this treatment for now - but he said it could be an option in the near future.
On to rheumatology with Dr. Maleki ~ I really liked her a lot. This appointment was very long. She spent most of the time going step by step through symptoms of an autoimmune disease that she and Dr. Olson are looking at as a possible diagnosis for me. Churg Strauss Syndrome is so rare it only effects 10 in a million people. It presents as late onset asthma, heart defects, tingling or numbness in the extremities, and rashes. Dr. Maleki isn't certain that it fits me because I don't have the rashes. She's waiting for the bone marrow biopsy for more information. She ordered a few more labs and sent me on my way for the final wrap up with Dr. Olson.
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