Taking the Day as it Comes
I had hoped that Wednesday would be a day for me to get a lot of little things done. I start chemo next Wednesday and only have one more full day off to tackle all of those little things. I woke up late and groggy as I didn't sleep well the night before. I have a lot of discomfort in my abdomen and sometimes have lower back pain that spreads into my legs. This is worse lying down, therefore disrupting my ability to sleep well. I am sure it comes from a combination of swollen organs and lymph nodes and the accumulation of fluid in the abdomen. Hopefully it will improve with the chemo.
My Nurse Navigator, Lisa, called me to go over a list of questions I had regarding my diagnosis in general and the upcoming chemo in particular. Although she referred me to my oncologist for most of the questions, she did give me some insight and agreed to find out some info and get back to me.
One particular issue I wanted to discuss was a referral to a Rheumatologist. My oncologist had indicated that I could not be considered for any trials or for immunotherapy if I had a diagnosis of Lupus or other autoimmune diseases. Years ago I was diagnosed with Lupus but that was changed to Collagen Vascular Disease, non specified. Whatever that means. I have a variety of symptoms, but mostly they only surface during times of extreme stress or physical weakness. I hadn't been to a doctor specifically for any of the symptoms in years and years. I've learned to control most of the symptoms with diet and lifestyle changes. So when Dr. Chiu (my oncologist) said I needed to have a Rheumatologist give me a diagnosis, I contacted my primary care (Mateo Siefert, Nurse Practitioner) who indicated that a referral could take a long time and wanted me to ask Dr. Chiu to make the referral based on his diagnosis of my cancer. Dr. Chiu referred me to the UNM Rheumatology Department. They are only taking patients on an emergency basis. So he sent me back to Mateo. I know that there are a shortage of physicians in New Mexico and therefore long wait times for many new patients. So I talked to my son in Ohio, he works for a large medical complex, to see if the wait time for new patients is also long in Ohio. He promised to do some checking and I called Medicare to see if they would cover an out of state appointment. Medicare explained that because I had "original" Medicare, I could choose any doctor in any state so long as they accepted Medicare. I didn't need a referral from a doctor. Interestingly, if I had regular insurance or Medicare Advantage, etc., I would need a doctor's referral and could not make the appointment myself. The woman I spoke with also told me how to use the Medicare web page to locate local physicians. As I was doing that, my son called back and informed me that I could have an appointment with a Rheumatologist in Ohio this coming Monday! I called a Albuquerque Center for Rheumatology and should have an appointment before the end of the month. I am satisfied with that. I won't hold my breath as to the outcome, but at least I will have one more care provider assisting with my care.
My husband is also off of work on Wednesday so we generally do some errands together. Our first stop was the post office to mail a package. When I started my car it hesitated. I should have taken that a bit more seriously. When we came out of the post office, the buggar wouldn't start! A wonderful woman helped us jump the battery and we drove back home to exchange vehicles. Hopefully our wonderful mechanic will be able to have a look at it soon. So back out we headed. I crossed a couple of errands off of the list and we just had grocery shopping left. I get tired out easily now so this is a big job for me. Even though we had a fairly short list, as we were looking for the very last item, a wave of fatigue hit me and I could hardly stand up. I broke out in a profuse sweat and turned pale and shaky. This pissed me off, which didn't help at all! I hung onto the buggy as hubby steered, and we checked out and headed home.
So virtually nothing on my list of to-dos got done but I am getting so used to that. I did accomplish a biggie with the Rheumatology appointment. I did do one load of laundry. I did mail a package to an Etsy customer within the allotted time-frame. I did make groceries. I did throw that container of leftover pasta into the oven and call it dinner! And I did knit at least 1,000 stitches on the Wonder Woman Shaw for my friend's daughter. And I got to talk to both of my sons on the phone. So there!
I had hoped that Wednesday would be a day for me to get a lot of little things done. I start chemo next Wednesday and only have one more full day off to tackle all of those little things. I woke up late and groggy as I didn't sleep well the night before. I have a lot of discomfort in my abdomen and sometimes have lower back pain that spreads into my legs. This is worse lying down, therefore disrupting my ability to sleep well. I am sure it comes from a combination of swollen organs and lymph nodes and the accumulation of fluid in the abdomen. Hopefully it will improve with the chemo.
My Nurse Navigator, Lisa, called me to go over a list of questions I had regarding my diagnosis in general and the upcoming chemo in particular. Although she referred me to my oncologist for most of the questions, she did give me some insight and agreed to find out some info and get back to me.
One particular issue I wanted to discuss was a referral to a Rheumatologist. My oncologist had indicated that I could not be considered for any trials or for immunotherapy if I had a diagnosis of Lupus or other autoimmune diseases. Years ago I was diagnosed with Lupus but that was changed to Collagen Vascular Disease, non specified. Whatever that means. I have a variety of symptoms, but mostly they only surface during times of extreme stress or physical weakness. I hadn't been to a doctor specifically for any of the symptoms in years and years. I've learned to control most of the symptoms with diet and lifestyle changes. So when Dr. Chiu (my oncologist) said I needed to have a Rheumatologist give me a diagnosis, I contacted my primary care (Mateo Siefert, Nurse Practitioner) who indicated that a referral could take a long time and wanted me to ask Dr. Chiu to make the referral based on his diagnosis of my cancer. Dr. Chiu referred me to the UNM Rheumatology Department. They are only taking patients on an emergency basis. So he sent me back to Mateo. I know that there are a shortage of physicians in New Mexico and therefore long wait times for many new patients. So I talked to my son in Ohio, he works for a large medical complex, to see if the wait time for new patients is also long in Ohio. He promised to do some checking and I called Medicare to see if they would cover an out of state appointment. Medicare explained that because I had "original" Medicare, I could choose any doctor in any state so long as they accepted Medicare. I didn't need a referral from a doctor. Interestingly, if I had regular insurance or Medicare Advantage, etc., I would need a doctor's referral and could not make the appointment myself. The woman I spoke with also told me how to use the Medicare web page to locate local physicians. As I was doing that, my son called back and informed me that I could have an appointment with a Rheumatologist in Ohio this coming Monday! I called a Albuquerque Center for Rheumatology and should have an appointment before the end of the month. I am satisfied with that. I won't hold my breath as to the outcome, but at least I will have one more care provider assisting with my care.
My husband is also off of work on Wednesday so we generally do some errands together. Our first stop was the post office to mail a package. When I started my car it hesitated. I should have taken that a bit more seriously. When we came out of the post office, the buggar wouldn't start! A wonderful woman helped us jump the battery and we drove back home to exchange vehicles. Hopefully our wonderful mechanic will be able to have a look at it soon. So back out we headed. I crossed a couple of errands off of the list and we just had grocery shopping left. I get tired out easily now so this is a big job for me. Even though we had a fairly short list, as we were looking for the very last item, a wave of fatigue hit me and I could hardly stand up. I broke out in a profuse sweat and turned pale and shaky. This pissed me off, which didn't help at all! I hung onto the buggy as hubby steered, and we checked out and headed home.
So virtually nothing on my list of to-dos got done but I am getting so used to that. I did accomplish a biggie with the Rheumatology appointment. I did do one load of laundry. I did mail a package to an Etsy customer within the allotted time-frame. I did make groceries. I did throw that container of leftover pasta into the oven and call it dinner! And I did knit at least 1,000 stitches on the Wonder Woman Shaw for my friend's daughter. And I got to talk to both of my sons on the phone. So there!
All in all, you did good today! You don't need to overdo! One foot in front of the other :) Love you dear cousin! <3
ReplyDeleteThank you sweet Dottie. As you well know, the frustration of not being able to accomplish even a half or a fourth of what you are used to doing can be very depressing. I am working on being more patient and gentle with myself. Work in progress!!
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