Journal entry by Danielle Tiegen —
Updates:
As I try to explain to an ER doctor why my pain isn't being managed by my many doctors, I realize I might need to update people.
ER Doctor: please follow up with your family doctor for pain management.
Me: primary doctor sent me to pain clinic. Pain clinic said no injections because platelets too low - back to primary. Primary sent me to oncologist about platelets. Oncologist won't deal with pain, but sent me to gastroenterologist to see if liver is filtering out the platelets. Gastroenterologist is trying to figure out my stomach issues, but sending me down to UIHC to discuss liver transplant since I have stage 4 cirrhosis... She can't do anything for the pain, especially since my liver is messed up (no OTC pain meds approved right now). So she sends me back to primary. Primary then says to see neurologist about the back pain. He did an MRI and yes, there are issues, but with the platelets being so so low, he recommended pain clinic (hahaha been there done that already). He also wrote a referral for aqua therapy (ok, that is available in my area --- NOT!).
My insurance recommended I get a case manager to help with everything. I spoke to someone on Friday and she didn't know what to say about any of it. But her main focus right now is to work with me on losing weight. I have always been called fat or a baby whale by people in my own family. It has taken years to accept my body. Yes, I see women who are over 300 pounds and I see them as the same size I am. I weighed in at 210 earlier this year. I'm down to 188. I have made healthier substitutions on my food choices, but I mainly eat what I enjoy because I'm never hungry. Ok... Sorry about my rant.
Internist: Diabetes way under control. A1C was 5.2% so my medicine was actually reduced. Heart health is still a little off. Resting heart rate is too high and blood pressure is still an issue. Up'd my meds and will keep an eye on it. Kidneys are still being watched and I have one kidney that never fully developed. We have known this for years, but now it might become an issue.
Oncologist: MGUS is being monitored. As long as my 3 month numbers stay down, I won't have to do chemotherapy. Once my numbers go up, chemo and transplant will be on my to do list. Next appointment in December.
Gastroenterologist: bowel inflammation is a concern. I have done capsule endoscopy, stool studies and now we are doing another colonoscopy to see what is inflamed and to verify that I'm not losing blood anywhere. She is sending me down to UIHC to get on the liver transplant list because I do have stage 4 liver cirrhosis, secondary to non-alcoholic fatty liver disease. As long as I stay categorized bas MGUS, I should be eligible for a transplant. If the MGUS progresses before a new liver is found, I might get kicked off the list? Colonoscopy is in October and Transplant appointment is in November.
Neurologist: won't see me until platelets improve.
Pain Clinic: won't see me until platelets improve.
In the mean time, I'm tired almost everyday. I can sleep all day... Kinda sucks. Makes me feel fat and lazy. But I'm working on that. It also sucks ass that everyone is focused soley on me losing weight. I know I'm not skinny, but damn people, be nice!
So that is what is going on right now. I try not to stress about the small things and stuff I have no control of. I'm traveling as much as I can, while I can. But everything is exhausting. Afternoon naps are 👍
Thanks for reading this. If you want to support my new hobby, please visit www.ShopWithStacisMom.com
As I try to explain to an ER doctor why my pain isn't being managed by my many doctors, I realize I might need to update people.
ER Doctor: please follow up with your family doctor for pain management.
Me: primary doctor sent me to pain clinic. Pain clinic said no injections because platelets too low - back to primary. Primary sent me to oncologist about platelets. Oncologist won't deal with pain, but sent me to gastroenterologist to see if liver is filtering out the platelets. Gastroenterologist is trying to figure out my stomach issues, but sending me down to UIHC to discuss liver transplant since I have stage 4 cirrhosis... She can't do anything for the pain, especially since my liver is messed up (no OTC pain meds approved right now). So she sends me back to primary. Primary then says to see neurologist about the back pain. He did an MRI and yes, there are issues, but with the platelets being so so low, he recommended pain clinic (hahaha been there done that already). He also wrote a referral for aqua therapy (ok, that is available in my area --- NOT!).
My insurance recommended I get a case manager to help with everything. I spoke to someone on Friday and she didn't know what to say about any of it. But her main focus right now is to work with me on losing weight. I have always been called fat or a baby whale by people in my own family. It has taken years to accept my body. Yes, I see women who are over 300 pounds and I see them as the same size I am. I weighed in at 210 earlier this year. I'm down to 188. I have made healthier substitutions on my food choices, but I mainly eat what I enjoy because I'm never hungry. Ok... Sorry about my rant.
Internist: Diabetes way under control. A1C was 5.2% so my medicine was actually reduced. Heart health is still a little off. Resting heart rate is too high and blood pressure is still an issue. Up'd my meds and will keep an eye on it. Kidneys are still being watched and I have one kidney that never fully developed. We have known this for years, but now it might become an issue.
Oncologist: MGUS is being monitored. As long as my 3 month numbers stay down, I won't have to do chemotherapy. Once my numbers go up, chemo and transplant will be on my to do list. Next appointment in December.
Gastroenterologist: bowel inflammation is a concern. I have done capsule endoscopy, stool studies and now we are doing another colonoscopy to see what is inflamed and to verify that I'm not losing blood anywhere. She is sending me down to UIHC to get on the liver transplant list because I do have stage 4 liver cirrhosis, secondary to non-alcoholic fatty liver disease. As long as I stay categorized bas MGUS, I should be eligible for a transplant. If the MGUS progresses before a new liver is found, I might get kicked off the list? Colonoscopy is in October and Transplant appointment is in November.
Neurologist: won't see me until platelets improve.
Pain Clinic: won't see me until platelets improve.
In the mean time, I'm tired almost everyday. I can sleep all day... Kinda sucks. Makes me feel fat and lazy. But I'm working on that. It also sucks ass that everyone is focused soley on me losing weight. I know I'm not skinny, but damn people, be nice!
So that is what is going on right now. I try not to stress about the small things and stuff I have no control of. I'm traveling as much as I can, while I can. But everything is exhausting. Afternoon naps are 👍
Thanks for reading this. If you want to support my new hobby, please visit www.ShopWithStacisMom.com
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