Today I'm starting high doses of prednisone to thwart a severe arthritic flare. 30mg per day for a week, then go down from there. I guess I can't worry about side effects, I'm here on earth, and that's enough for now.
I have been in so much pain, and I wonder how it is that I fight off cancer and now have to deal with more arthritis. A part of me was hoping my RA would magically disappear when I was receiving chemo. No such luck.
It is just so amazing to me that those of us with health struggles get through our days. What gives us the strength to continue? All I want for my mom with diabetes is for her to be able to run in the sun, play on the beach, laugh, and enjoy a wonderful meal. My sister has food allergies, so every meal is met with careful planning, why? Why is my aunt burdened with RA? Why my uncle with diabetes? Why another uncle with cancer?
I believe it is not for us to ask "why" as God has a plan. Yesterday as I was coming back from the cancer center with my mega prescription of prednisone, I was finding I needed again to look for the lining, that golden beam of light that assures me that no matter what we are given, we will prevail in the end. All we need to do is have faith.
So that's what I do, I pray. I have faith that God places all of us together in a certain way to support each other, to inspire each other, to carry each other, to love one another.
So all I can do is give my love when I am in pain. I give my prayers, as prayers do not require my hands, but instead my heart and soul.
CDC Symptom Diary Card
Tuesday, May 18, 2010
Thursday, May 13, 2010
Anger and pain
This morning every joint in my body hurts. It hurt to slice a banana. I could barely get out of bed. My hands and ankles are swollen, my neck hurts, my knees hurt, my feet hurt, my right hip hurts.
I wonder about anger and it's relationship to disease. I got so angry yesterday. Plus, I spent more time than usual on the computer trying to find photos for facebook, which may be why my shoulders and shoulder blades and hands hurt. I have no idea. All I do know is that stress is bad for arthritis and it's very bad for cancer.
I am really flaring and everything hurts. I called the rheumatology clinic to see if they can see me earlier than October (geez). A nurse is scheduled to call me back, I'll hope for the best.
I can't deal with this kind of pain all over, I just can't. I don't want to spend the rest of my days in so much pain that I can't wring out a wash cloth to wash my face. I want to get outside, walk, do yoga, get stronger.
I want my cancer recovery to be full of excitement and happiness, not arthritic pain. I hope we can tame this soon. I just have to be hopeful.
I also need to get back to church every week. I haven't been able to go regularly. I miss God's spiritual nurturing. I have been afraid of getting sick in church, so I haven't gone. Going to church helps me have more patience, helps me to tame anger.
My body cannot afford for me to have angry emotions. I need happy emotions. I need those endorphins.
Well, that's all for today. Surgery tomorrow. Should go well. Thanks for reading.
I wonder about anger and it's relationship to disease. I got so angry yesterday. Plus, I spent more time than usual on the computer trying to find photos for facebook, which may be why my shoulders and shoulder blades and hands hurt. I have no idea. All I do know is that stress is bad for arthritis and it's very bad for cancer.
I am really flaring and everything hurts. I called the rheumatology clinic to see if they can see me earlier than October (geez). A nurse is scheduled to call me back, I'll hope for the best.
I can't deal with this kind of pain all over, I just can't. I don't want to spend the rest of my days in so much pain that I can't wring out a wash cloth to wash my face. I want to get outside, walk, do yoga, get stronger.
I want my cancer recovery to be full of excitement and happiness, not arthritic pain. I hope we can tame this soon. I just have to be hopeful.
I also need to get back to church every week. I haven't been able to go regularly. I miss God's spiritual nurturing. I have been afraid of getting sick in church, so I haven't gone. Going to church helps me have more patience, helps me to tame anger.
My body cannot afford for me to have angry emotions. I need happy emotions. I need those endorphins.
Well, that's all for today. Surgery tomorrow. Should go well. Thanks for reading.
Wednesday, May 12, 2010
I just need to vent
Wish this post was a happy-go-lucky note. Before I vent about my arguement with the physical therapist, please allow me to paint a picture of my current status.
1. My arthritis is flaring. It takes at least 3 to 4 hours before I can really do anything. My hands are swollen, hip hurts, wrists hurt, neck hurts. All I have to do is a little extra activity and whammo. My next Rheumy appt isn't until October, I'm on the waiting list, but I need to do something. Taking 5mg of Prednisone and Advil every day. I'm not on my miracle drug, Enbrel, anymore. This worries me about my future and also is very frustrating because I need to increase my activity to heal from Cancer. I need to exercise more to prevent Breast Cancer. AND I don't want Ovarian cancer to return, so I need to be slim and healthy, as much as possible.
2. I can't train to go climb a mountain. I want to really celebrate the recovery from OC and go do something extreme that says " I won!" My arthritis says I am going to suffer if I enjoy gardening, that's what. My digestive system is still a mess so I don't want to celebrate by eating, because eating is not fun right now. (I can really sympathize with mom who is a diabetic) Whine whine whine, I just need to deal with it I guess, I just want to be stronger and I will need extra time to get back to a good state, if I ever do.
3. I do get to have iron infusion treatments twice per week for three weeks in June. That is good. Maybe removing my anemia will help me cope better and give me more energy to get stronger. My hematologist said I have Thallasemia, another genetic illness. When does it end. He also thinks my neutrapenia is cyclic, so I'll need to do weekly lab draws after the iron therapy so he can track my situation. That will probably start the end of June and I have no idea how long that will take.
4. I will have a mild surgery this Friday to have an abdominal cathetar removed. Because my immune system was so so low, I was lucky to get a neulasta shot the other day. Thank God. That should last for two weeks or so.
5. NOW... I have a huge headache because the Physical Therapist and I had an arguement today that came out of nowhere. I saw them on April 1st. They did some myofacial release therapy and gave me some mild exercise instructions. It lasted about an hour and they said they would get ahold of me so that I could come back in a week or two, depending on how I feel. I was told that I had 5 visits approved by my insurance. That's it.
They finally called me last week to schedule an appointment ( a month later). I kindly requested she call me on the 10th because I was waiting on my hematology schedule, then I would be better able to schedule the next physical therapy. The scheduler was totally OK with that.
So today the PT scheduler called me to schedule the next appointment. (45 days since I saw them). Because my schedule is now packed with surgery Friday, iron infusions twice a week etc etc, I wanted to wait until June. I'm overwhelmed with doing too much "treatment" on one day, that's all.
Out of nowhere, the scheduler said she'd need to then discharge me because that was more than 4 weeks between treatments. I said, "it's ALREADY BEEN more than 4 weeks"...blah blah "that doesn't make sense". I got stressed and I begged for an appointment in two weeks. The conversation was edgy because I don't want to lose my PT visits over something like the scheduler not calling me in a timely manner. I had no idea that the orders were for me to be seen weekly for 5 weeks. If I would have known that, then I would have taken initiative and called them, and would have asked them why they didn't call me back after my first visit.
The Physical Therapist called later and said "Sounds like you don't need PT anymore, you must be doing well". I'm like WHAT??????? I said that I still needed PT, was having abdominal pain still and didn't understand why they wanted to discharge me. I said to her also that it was already over a month before they called me for my second appointment.
She told me I need to be "polite" during our conversation. She was totally condescending, wanting me to be the "bad guy".
So we went round and round about that PT never called me to reschedule and they said I should have called them......whatever. My phone kept dying, so she probably thought I hung up on her (to make matters worse). How did this happen? I am the patient. I am not privy to patient scheduling policies and procedures and I don't know the exact medical orders. Plus, they are contradicting themselves.
Personally, I think they don't want to see me because I got frustrated with the scheduler and have been now labeled as troubling or something. I think they messed up the doctor's orders and got me entangled in an argument so that they can claim I am cantankerous and uncooperative, so they then can justify discharging me. I hate this kind of thing. I hate being labelled this way when I didn't even do anything. They forgot about me, period.
So the PT said she was discharging me and told me to request a new PT order when I see my Oncologist at the end of June. WHAT?????
At the end of the conversation I said to her that I do not want to be made out to be the bad guy, I did nothing "wrong". I had to re-explain that I am worried about OC returning, getting breast cancer, and that I have all these appointments coming up for hematology and that I am on antidepressants. I AM DOING THE BEST I CAN! I forgot to tell her about the arthritis.
So I had to leave a message with my oncology nurses that PT has prematurely discharged me and gave them a summary of the situation.
AGAIN, what ...how...why? And why am I always the bad guy here?
The worse part is that I bet my insurance won't approve it again, because I went several weeks without therapy. The PT just screwed me over.
Just needed to vent.
1. My arthritis is flaring. It takes at least 3 to 4 hours before I can really do anything. My hands are swollen, hip hurts, wrists hurt, neck hurts. All I have to do is a little extra activity and whammo. My next Rheumy appt isn't until October, I'm on the waiting list, but I need to do something. Taking 5mg of Prednisone and Advil every day. I'm not on my miracle drug, Enbrel, anymore. This worries me about my future and also is very frustrating because I need to increase my activity to heal from Cancer. I need to exercise more to prevent Breast Cancer. AND I don't want Ovarian cancer to return, so I need to be slim and healthy, as much as possible.
2. I can't train to go climb a mountain. I want to really celebrate the recovery from OC and go do something extreme that says " I won!" My arthritis says I am going to suffer if I enjoy gardening, that's what. My digestive system is still a mess so I don't want to celebrate by eating, because eating is not fun right now. (I can really sympathize with mom who is a diabetic) Whine whine whine, I just need to deal with it I guess, I just want to be stronger and I will need extra time to get back to a good state, if I ever do.
3. I do get to have iron infusion treatments twice per week for three weeks in June. That is good. Maybe removing my anemia will help me cope better and give me more energy to get stronger. My hematologist said I have Thallasemia, another genetic illness. When does it end. He also thinks my neutrapenia is cyclic, so I'll need to do weekly lab draws after the iron therapy so he can track my situation. That will probably start the end of June and I have no idea how long that will take.
4. I will have a mild surgery this Friday to have an abdominal cathetar removed. Because my immune system was so so low, I was lucky to get a neulasta shot the other day. Thank God. That should last for two weeks or so.
5. NOW... I have a huge headache because the Physical Therapist and I had an arguement today that came out of nowhere. I saw them on April 1st. They did some myofacial release therapy and gave me some mild exercise instructions. It lasted about an hour and they said they would get ahold of me so that I could come back in a week or two, depending on how I feel. I was told that I had 5 visits approved by my insurance. That's it.
They finally called me last week to schedule an appointment ( a month later). I kindly requested she call me on the 10th because I was waiting on my hematology schedule, then I would be better able to schedule the next physical therapy. The scheduler was totally OK with that.
So today the PT scheduler called me to schedule the next appointment. (45 days since I saw them). Because my schedule is now packed with surgery Friday, iron infusions twice a week etc etc, I wanted to wait until June. I'm overwhelmed with doing too much "treatment" on one day, that's all.
Out of nowhere, the scheduler said she'd need to then discharge me because that was more than 4 weeks between treatments. I said, "it's ALREADY BEEN more than 4 weeks"...blah blah "that doesn't make sense". I got stressed and I begged for an appointment in two weeks. The conversation was edgy because I don't want to lose my PT visits over something like the scheduler not calling me in a timely manner. I had no idea that the orders were for me to be seen weekly for 5 weeks. If I would have known that, then I would have taken initiative and called them, and would have asked them why they didn't call me back after my first visit.
The Physical Therapist called later and said "Sounds like you don't need PT anymore, you must be doing well". I'm like WHAT??????? I said that I still needed PT, was having abdominal pain still and didn't understand why they wanted to discharge me. I said to her also that it was already over a month before they called me for my second appointment.
She told me I need to be "polite" during our conversation. She was totally condescending, wanting me to be the "bad guy".
So we went round and round about that PT never called me to reschedule and they said I should have called them......whatever. My phone kept dying, so she probably thought I hung up on her (to make matters worse). How did this happen? I am the patient. I am not privy to patient scheduling policies and procedures and I don't know the exact medical orders. Plus, they are contradicting themselves.
Personally, I think they don't want to see me because I got frustrated with the scheduler and have been now labeled as troubling or something. I think they messed up the doctor's orders and got me entangled in an argument so that they can claim I am cantankerous and uncooperative, so they then can justify discharging me. I hate this kind of thing. I hate being labelled this way when I didn't even do anything. They forgot about me, period.
So the PT said she was discharging me and told me to request a new PT order when I see my Oncologist at the end of June. WHAT?????
At the end of the conversation I said to her that I do not want to be made out to be the bad guy, I did nothing "wrong". I had to re-explain that I am worried about OC returning, getting breast cancer, and that I have all these appointments coming up for hematology and that I am on antidepressants. I AM DOING THE BEST I CAN! I forgot to tell her about the arthritis.
So I had to leave a message with my oncology nurses that PT has prematurely discharged me and gave them a summary of the situation.
AGAIN, what ...how...why? And why am I always the bad guy here?
The worse part is that I bet my insurance won't approve it again, because I went several weeks without therapy. The PT just screwed me over.
Just needed to vent.
Tuesday, May 04, 2010
My immune system update
Well, at the risk of boring you, I'm neutropenic again, per my primary care doctor. The neulasta has worn off. In my current condition I must go to the emergency room if I get a fever because my immune system is severly compromised.
I see the hematologist at the end of May.
Now I have to return to living my life "carefully" and be mindful of my exposure to germs, avoid crowds, and do everything I can to boost my immune system. I'm tired all the time, but not sure how much of this fatigue is post-chemo versus immune suppressed depletion.
I am making a huge effort not to be so self-centered on my health, and it's not so easy when simple things become hard. My arthritis is getting a little worse. The weeding did make my hands swell, but I wanted to enjoy nature. I want to be active, be strong, live life fully.
Now that I can focus on details a bit better, my post-chemo experiences are much richer. If you ever know of anyone else who is in the throws of chemo, be patient.
The fog of chemo makes it so difficult to communicate and participate in activities. I was listening to a recording of a woman's state of mind while she was undergoing chemo for breast cancer. She said that she was happy to just stare at the ceiling, no energy for movies or even TV. I thought, "I can relate".
Anyway, it's still a good day. My new hematologist seems intelligent, very curious and wants to solve my immunity dilemna. Hopefully my insurance will approve GSF shots to boost my immune system (won't be cheap). Hopefully we can find out "why".
In the mean time I am going to get my dictionary out, find the word "normal" and cross out the definition. I'll then proceed to write "not applicable to Denise Archuleta". HA!
I see the hematologist at the end of May.
Now I have to return to living my life "carefully" and be mindful of my exposure to germs, avoid crowds, and do everything I can to boost my immune system. I'm tired all the time, but not sure how much of this fatigue is post-chemo versus immune suppressed depletion.
I am making a huge effort not to be so self-centered on my health, and it's not so easy when simple things become hard. My arthritis is getting a little worse. The weeding did make my hands swell, but I wanted to enjoy nature. I want to be active, be strong, live life fully.
Now that I can focus on details a bit better, my post-chemo experiences are much richer. If you ever know of anyone else who is in the throws of chemo, be patient.
The fog of chemo makes it so difficult to communicate and participate in activities. I was listening to a recording of a woman's state of mind while she was undergoing chemo for breast cancer. She said that she was happy to just stare at the ceiling, no energy for movies or even TV. I thought, "I can relate".
Anyway, it's still a good day. My new hematologist seems intelligent, very curious and wants to solve my immunity dilemna. Hopefully my insurance will approve GSF shots to boost my immune system (won't be cheap). Hopefully we can find out "why".
In the mean time I am going to get my dictionary out, find the word "normal" and cross out the definition. I'll then proceed to write "not applicable to Denise Archuleta". HA!
Sunday, May 02, 2010
mother nature
The other day I was blessed with the ability to pull weeds. Now, that may not sound like a lot of fun, but I was truly in a state of total calm. The soil dark and rich with nitrates reveals the essence of life. It had just rained and the soil was soft on my hands, easy on my joints, sweet on my senses.
It reminded me that as our bodies return to the soil, mother earth, our spirit goes with God to be in eternal serenity. (At least that is my belief).
Touching each grain of richness, saying hello to a few earthworms, and enjoying the fragrance of the dirt and grass caused me to breathe deep and smile. In the background I could hear the birds singing their stories for all to hear.
For that moment was a beautiful moment. And for each moment, is a beautiful moment, if only we can create it to be so.
And then I was blessed again on Saturday with a visit from Mandy and her children. We played, laughed, watched the Kentucky Derby and talked. Mom was thrilled. It was so wonderful to just take a moment to forget about problems and be happy.
It reminded me that as our bodies return to the soil, mother earth, our spirit goes with God to be in eternal serenity. (At least that is my belief).
Touching each grain of richness, saying hello to a few earthworms, and enjoying the fragrance of the dirt and grass caused me to breathe deep and smile. In the background I could hear the birds singing their stories for all to hear.
For that moment was a beautiful moment. And for each moment, is a beautiful moment, if only we can create it to be so.
And then I was blessed again on Saturday with a visit from Mandy and her children. We played, laughed, watched the Kentucky Derby and talked. Mom was thrilled. It was so wonderful to just take a moment to forget about problems and be happy.
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