I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.
I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.
I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles, have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!
When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)
When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even felt them but it was traumatic for me.
Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.
One of those blog posts
This is my third try to write a blog post this morning. The first one was on quality of life post cancer treatment. The second one was on the s-word. The third one is on my day because I am not inspired to write about the first two.
Today is one of those days with a thousand things to do at home and around the house. My husband has a bigger list than me because I can't do all the things that need to be done. I am doing the laundry so I get points for that. And I will clean the kitchen in a bit so don't think I am lazy.
Last night we went out to dinner and got our desserts to go so we could eat it tonight. Well, I got on the phone with a friend and ended up eating my share of both desserts so I am feeling a little full this morning. I did eat some fruit and a yogurt but will find something more later on.
My back hates me again/still today. I take pain pills and suck it up. I could be cranky. But I'll skip that part for now.
Face it, I live a boring life and have no inspiration today at all..
Today is one of those days with a thousand things to do at home and around the house. My husband has a bigger list than me because I can't do all the things that need to be done. I am doing the laundry so I get points for that. And I will clean the kitchen in a bit so don't think I am lazy.
Last night we went out to dinner and got our desserts to go so we could eat it tonight. Well, I got on the phone with a friend and ended up eating my share of both desserts so I am feeling a little full this morning. I did eat some fruit and a yogurt but will find something more later on.
My back hates me again/still today. I take pain pills and suck it up. I could be cranky. But I'll skip that part for now.
Face it, I live a boring life and have no inspiration today at all..
Comparisons and Standards
Take two people with the same ailment in the same room and one of the first things they will do is start comparing their ailments, doctors and treatments. This is normal. (People who have not had the ailment are not allowed in these conversations because they will insist on comparing the treatment their cousin's hairdresser's neighbor's dogwalker's mother in law had for a similar but different ailment, was treated by a different treatment protocol, and then died after month's in pain in a greatly emaciated state.)
Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.
I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.
One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years now. Mine is still uncontrolled but is slowly being tamed.
When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.
Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.
My rheumatologist's office sees me every three months for now and I have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.
Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.
This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.
I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!
I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.
Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.
I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.
One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years now. Mine is still uncontrolled but is slowly being tamed.
When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.
Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.
My rheumatologist's office sees me every three months for now and I have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.
Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.
This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.
I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!
I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.
Day by day
These days I live things day by day. What I mean by this is I plan to have a normal schedule and be the normal me (as much as I can be considered to be normal) and then I start making alterations to my schedule based on how I feel. Some days I keep my schedule and some days, I make short cuts, go home early and take naps.
Yesterday I was supposed to go out to dinner with family but I opted to stay home. I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.
This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?
I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.
Now I know, nap first, motivate later.
Yesterday I was supposed to go out to dinner with family but I opted to stay home. I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.
This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?
I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.
Now I know, nap first, motivate later.
That was stupid (on my part)
They (the all knowing all powerful they) insist that patients should get and keep all of their medical test results. They say its the smart thing to do. So being smart, yesterday I went off to get a copy of my CT scan results so I can read it myself and obey 'them'.
Now I'm sorry I did.
I know the value of having a doctor interpret the results but the ER doctor had already told me no injuries, just some arthritis in my neck.
I also know that some things show up on test results that the radiologists comment on but aren't really important and can be ignored.
But now I want to call my doctor to find out if I should be concerned. Both tests, the head CT and the neck CT, conclude with no acute findings with chronic findings as noted. Acute means no injuries. Chronic means never going to go away.
I had a spine MRI about four years ago and will attempt to dig out the results which are buried in my folder of medical test results later today. I do not believe that MRI reported any chronic findings with my neck or cervical spine.
My concern is where the CT test results say things like:
"There is mild prominence of extra-axial volume loss" when they talk about my brain. Is my brain shrinking?
"There is minimal degenerative anterolisthesis at C3/4 and minimal degenerative retrolisthesis at C4/C5. A C4/C5 there is minimal narrowing of the central canal due to broad-based disc osteophyte. There is moderate narrowing of the bony right neural foramen due to disc and uncovertebral joint degeneration."
My concerns are:
As far as the ER doctor was concerned, I was not injured in the accident but I don't think he cares about the other stuff. Nothing against him as its not part of his job.
I will call my PCP and see if I can talk to her about this and find out if I should be concerned or if I should make an appointment. I was stupid. I should have ignored the report until my next appointment.
Now I'm sorry I did.
I know the value of having a doctor interpret the results but the ER doctor had already told me no injuries, just some arthritis in my neck.
I also know that some things show up on test results that the radiologists comment on but aren't really important and can be ignored.
But now I want to call my doctor to find out if I should be concerned. Both tests, the head CT and the neck CT, conclude with no acute findings with chronic findings as noted. Acute means no injuries. Chronic means never going to go away.
I had a spine MRI about four years ago and will attempt to dig out the results which are buried in my folder of medical test results later today. I do not believe that MRI reported any chronic findings with my neck or cervical spine.
My concern is where the CT test results say things like:
"There is mild prominence of extra-axial volume loss" when they talk about my brain. Is my brain shrinking?
"There is minimal degenerative anterolisthesis at C3/4 and minimal degenerative retrolisthesis at C4/C5. A C4/C5 there is minimal narrowing of the central canal due to broad-based disc osteophyte. There is moderate narrowing of the bony right neural foramen due to disc and uncovertebral joint degeneration."
My concerns are:
- If these are chronic are they going to get worse or stay the same?
- Why did they happen?
- Should I be concerned? Which I guess is my main question.
As far as the ER doctor was concerned, I was not injured in the accident but I don't think he cares about the other stuff. Nothing against him as its not part of his job.
I will call my PCP and see if I can talk to her about this and find out if I should be concerned or if I should make an appointment. I was stupid. I should have ignored the report until my next appointment.
Accident update
I went over to the garage where the car was towed with the intent of cleaning out anything of value and seeing if I could find my driver's license and eye glasses. My purse dumped out so I thought my license might be there. The airbag blew my glasses off so I was wearing a spare pair. When I arrived there the man who towed my car told me the other driver was arguing with the police when he was towing the cars.
I packed up all sorts of stuff in the car - my Aruba ice scraper, about $5 in change, mittens, hat, shovel, maps, CDs, etc. I found my glasses under the seat of the car. Then I realized I forgot my phone so I couldn't take a picture. I decided I would have to come back. My drivers license was no where to be found.
Then I went to the police station to pick up the report. The woman noted that it was very long. The part about me, driver 1, was brief. I was driving down the road and the other car pulled out in front of me and we collided and I was taken to the hospital.
The part about the other driver went on and on. She changed her story. She argued with the police that it was my fault. She told the police I needed to take responsibility for my actions. Her husband showed up and told the police how the accident happened (even though he wasn't there) and argued with the police some more. Then he wanted to know where I was and what hospital I was in and how I was doing. They had to explain the HIPAA laws to him twice. Driver 2 was cited for failure to yield and not having a drivers license with her.
I called our insurance company who said that if she was cited she would probably be at fault. And that not only do we have collision insurance we have medical coverage that will take care of all the medical bills incurred in my fun evening at the hospital. Yippee!
Her insurance company then called me. Driver 2 argued with her insurance company as well. I had to send them the police report. I like the part that she wants me to take responsibility for my actions and she keeps arguing with everyone that its not her fault.
Then I decided to go back to the car to take a picture of it, get the last of the CDs out of the console and find my glasses that I had put down while I was there. Stupid me.
I decided since my license was really missing, I would apply for a duplicate online. Then my husband came home and realized he had forgotten that the police had given my license to him - they must have found it in the car. Grr.
Lastly, the appraiser called last night and he is going to look at the car today and will let us know if its totalled.
Today I will also stop by the hospital and see if I can get a copy of my CT scan report to read the gory details about the arthritis in my neck. I still have a fat lip and some muscle aches and pains - in addition to my normal pains but am doing okay.
One last note is that when they took me to the hospital, I was wearing clean underwear which was bright pink and matched the polish on my toes which was visible through the hole in my sock.
I had a big adventure this weekend
This was not an an intentional adventure but an accidental one - literally. I will preface this by saying I am fine. But the car is not and is probably on its way to the big junkyard in the sky.
Saturday afternoon after returning from a luncheon, I decided to run out to the liquor store to get some wine to have with the curry I was cooking. I live in a neighborhood of small streets with a lot of intersections without stop signs. People often coast through them and assume that no one is coming, which is often the case as the roads are very quiet.
I turned off the main road and went one block up the steep curvy hill to turn left onto the two block long street which runs parallel to our street. 2/3 of the way down a road comes in on the right where the driver must turn left or right. I wasn't going more than 25 mph and all of a sudden there was a car in front of me turning right into the road. I tried to brake but bam.
All of a sudden the car was full of smoke from the air bag. (I repeat I am fine.) I got out of the car fast thinking it was on fire (because I am just so smart). I approached the other car and asked the woman if she was okay and if she could call the police because I didn't have my phone.
Two (wonderful) neighbors and spouses came out. One neighbor is a nurse and one is a dental hygienist. They gave me ice and towels for my bleeding lip. They let me use their phone to call my husband at home after they also called the police. The hygienist looked at my teeth because the air bag hit me in the mouth. She thought my teeth looked okay but suggested I get them checked out. The nurse also looked at me and said I should get checked out because of the airbag.
The police and fire department arrived and told me I should get checked out because of the airbag as well. They said that often injuries can be hidden because of the force of the airbag. They always recommend hospital trips when air bags deploy - standard protocol. I considered not going but then I decided I would be up worrying all night.
My husband arrived and held my hand and talked to the police. They were very nice as they put me on the 'comfy' backboard with big collar thingy. And away I went in the ambulance. They took the long way to the hospital so I got to spend more time sliding around the back board and saying ow at every bump.
About 15 minutes after I arrived at the ER my husband showed up. He had to take home the wine and beer and turn off the stove where I had left dinner simmering.
I got to wear the lovely collar for several hours. It was relatively uncomfortable but bearable once they got me off the back board. The doctor checked me out and wanted me to have a CT scan of my head and neck because I had pain in the back of my neck.
The doctor and nurses were all impressed with my lists: they needed to know - what medications I am on (7 daily prescriptions), previous surgeries (8 in all), and current medical ailments (RA, fibro, osteoporosis, cancer twice, degenerating back disks and more). They then switched from being impressed to the 'with your medical history, we need to be sure' mentality. They offered to send me home with pain meds but I thought I had plenty already.
It turns out I have arthritis in my neck and compressed discs as well. No wonder my neck hurts - now I have another topic for my rheumatologist next month. (But there were no brain abnormalities which means no sneaky brain mets - the hidden fear of all people who have ever had cancer.)
They finally let us go about four hours after we got there. I was happy to go home and have chocolate cake for dinner.
Of course I could not find my driver's license. My purse dumped out all over the floor of the car so I suspect it is there still. I will check today when I go to empty all the personal belongings out of the car. I also have to see if my glasses survived. I think the air bag knocked off my glasses and I didn't realize this until the ambulance was halfway to the hospital.
I also have to go to the police station and get the full accident report. I do not think I was at fault because I had right of way but you never know how these thing work out. Then I have to fill in my report online and call the insurance company.
Once I am done with all my paperwork, I might get some work done and then go to the gym to work out some of the stiffness. I am a little stiff but not horribly. I also take some heavy pain meds every day so who knows how I would really be feeling if I wasn't taking them.
Saturday afternoon after returning from a luncheon, I decided to run out to the liquor store to get some wine to have with the curry I was cooking. I live in a neighborhood of small streets with a lot of intersections without stop signs. People often coast through them and assume that no one is coming, which is often the case as the roads are very quiet.
I turned off the main road and went one block up the steep curvy hill to turn left onto the two block long street which runs parallel to our street. 2/3 of the way down a road comes in on the right where the driver must turn left or right. I wasn't going more than 25 mph and all of a sudden there was a car in front of me turning right into the road. I tried to brake but bam.
All of a sudden the car was full of smoke from the air bag. (I repeat I am fine.) I got out of the car fast thinking it was on fire (because I am just so smart). I approached the other car and asked the woman if she was okay and if she could call the police because I didn't have my phone.
Two (wonderful) neighbors and spouses came out. One neighbor is a nurse and one is a dental hygienist. They gave me ice and towels for my bleeding lip. They let me use their phone to call my husband at home after they also called the police. The hygienist looked at my teeth because the air bag hit me in the mouth. She thought my teeth looked okay but suggested I get them checked out. The nurse also looked at me and said I should get checked out because of the airbag.
The police and fire department arrived and told me I should get checked out because of the airbag as well. They said that often injuries can be hidden because of the force of the airbag. They always recommend hospital trips when air bags deploy - standard protocol. I considered not going but then I decided I would be up worrying all night.
My husband arrived and held my hand and talked to the police. They were very nice as they put me on the 'comfy' backboard with big collar thingy. And away I went in the ambulance. They took the long way to the hospital so I got to spend more time sliding around the back board and saying ow at every bump.
About 15 minutes after I arrived at the ER my husband showed up. He had to take home the wine and beer and turn off the stove where I had left dinner simmering.
I got to wear the lovely collar for several hours. It was relatively uncomfortable but bearable once they got me off the back board. The doctor checked me out and wanted me to have a CT scan of my head and neck because I had pain in the back of my neck.
The doctor and nurses were all impressed with my lists: they needed to know - what medications I am on (7 daily prescriptions), previous surgeries (8 in all), and current medical ailments (RA, fibro, osteoporosis, cancer twice, degenerating back disks and more). They then switched from being impressed to the 'with your medical history, we need to be sure' mentality. They offered to send me home with pain meds but I thought I had plenty already.
It turns out I have arthritis in my neck and compressed discs as well. No wonder my neck hurts - now I have another topic for my rheumatologist next month. (But there were no brain abnormalities which means no sneaky brain mets - the hidden fear of all people who have ever had cancer.)
They finally let us go about four hours after we got there. I was happy to go home and have chocolate cake for dinner.
Of course I could not find my driver's license. My purse dumped out all over the floor of the car so I suspect it is there still. I will check today when I go to empty all the personal belongings out of the car. I also have to see if my glasses survived. I think the air bag knocked off my glasses and I didn't realize this until the ambulance was halfway to the hospital.
I also have to go to the police station and get the full accident report. I do not think I was at fault because I had right of way but you never know how these thing work out. Then I have to fill in my report online and call the insurance company.
Once I am done with all my paperwork, I might get some work done and then go to the gym to work out some of the stiffness. I am a little stiff but not horribly. I also take some heavy pain meds every day so who knows how I would really be feeling if I wasn't taking them.
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