I am about to leave for my last doctor appointment for, drum roll please.... SIX WEEKS! I have not had a break like this in years. You may think I am kidding but I am not. I have to go back to like February/March of 2007 since a break like this.
I resolve to stay healthy and not need any medical care until October.
And I only have five more appointments scheduled for the balance of 2013. Plus at least two more set of blood work. I wonder what miracle caused that? Maybe I am getting healthier.
I will also add that my back is significantly better than it was after the trigger point injections.
No time for a big blog post today because I am late!
Showing posts with label doctor appointments. Show all posts
Showing posts with label doctor appointments. Show all posts
A Human Pincushion
My upper back h as been bothering me for a while. I haven't been sure if something new is going on, if it is referred pain from elsewhere in my body, or the pain was hidden by the horrible pain I had in my lower back until the successful procedure where nerves were killed off in my lower back in June.
Last week I broke down due to back pain and called my pain doctor. I thought I wouldn't be able to get an appointment before October because it usually takes that long. They said 'how about next Tuesday'. I said 'sure'. So I went.
We have never treated my upper back before because it has not been a problem. Its not rheumatoid. Its not cancer metastasis (the first thing that jumps into any cancer patients head). It could be fibromyalgia. It could be myofascial pain. Or it could be something else.
The doctor, after pushing on my back to make it hurt, suggested trigger point injections where he makes a series of intra muscular injections on my back in the painful areas. He has done this before on my lower back and they relieved a fair amount of pain.
There were five measly injections which he said would cause a pinch... and they were followed by deep pressure pain causing me to breath slowly out of my mouth instead of crying. The nurse came in to check my vitals after (they do that so patients don't pass out as they leave). When I got to my appt, my blood pressure was 123/78. After the injections it was 103/66.
I nixed the trip to Kohls and the trip to the gym after that adventure and came home to sit with my giant ice pack. I gave my husband two choices for dinner - he cooks or takeout. The delivery guy showed up on time with dinner.
So today I feel like a human pincushion. The doctor did say to take it easy for a day or two. I will see how it goes today at work. I am supposed to meet a friend for a walk this afternoon but it may be one of those days where I can't walk. But I hope that when the shots stop hurting, they will make my back stop hurting.
Last week I broke down due to back pain and called my pain doctor. I thought I wouldn't be able to get an appointment before October because it usually takes that long. They said 'how about next Tuesday'. I said 'sure'. So I went.
We have never treated my upper back before because it has not been a problem. Its not rheumatoid. Its not cancer metastasis (the first thing that jumps into any cancer patients head). It could be fibromyalgia. It could be myofascial pain. Or it could be something else.
The doctor, after pushing on my back to make it hurt, suggested trigger point injections where he makes a series of intra muscular injections on my back in the painful areas. He has done this before on my lower back and they relieved a fair amount of pain.
There were five measly injections which he said would cause a pinch... and they were followed by deep pressure pain causing me to breath slowly out of my mouth instead of crying. The nurse came in to check my vitals after (they do that so patients don't pass out as they leave). When I got to my appt, my blood pressure was 123/78. After the injections it was 103/66.
I nixed the trip to Kohls and the trip to the gym after that adventure and came home to sit with my giant ice pack. I gave my husband two choices for dinner - he cooks or takeout. The delivery guy showed up on time with dinner.
So today I feel like a human pincushion. The doctor did say to take it easy for a day or two. I will see how it goes today at work. I am supposed to meet a friend for a walk this afternoon but it may be one of those days where I can't walk. But I hope that when the shots stop hurting, they will make my back stop hurting.
I knew it wouldn't last
What was I thinking? Last week I blogged about privacy and not having a doctor appointment, other than a therapist appointment until October. I should never have opened my mouth. I did have a dentist appointment last week which has resulted in another dentist appointment tomorrow (no cavities).
I broke down yesterday and called my back pain doctor. In spite of the procedure at the end of June, I have discovered I have a lot of pain in my upper back pretty much non stop. I don't know what is going on with my back but it hurts and isn't giving up.
When I called to make the appointment with pain management, I expected to find there ws nothing available for several months - which isn't uncommon with that doctor. When they said next Tuesday at a convenient time, I practically fell off my chair. He usually has a months long wait list. I just got lucky I guess.
Well maybe we can figure out why my stupid back persists in hurting in this most annoying of fashions.
I broke down yesterday and called my back pain doctor. In spite of the procedure at the end of June, I have discovered I have a lot of pain in my upper back pretty much non stop. I don't know what is going on with my back but it hurts and isn't giving up.
When I called to make the appointment with pain management, I expected to find there ws nothing available for several months - which isn't uncommon with that doctor. When they said next Tuesday at a convenient time, I practically fell off my chair. He usually has a months long wait list. I just got lucky I guess.
Well maybe we can figure out why my stupid back persists in hurting in this most annoying of fashions.
Privacy
Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.
My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.
I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.
One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.
I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.
Boomerang day
Yesterday morning my plan was to go meet with my new rhematologist, then to work, and then to attempt the gym again. Life never goes as planned.
I could barely drag myself out of bed as I was so tired. I went to see my rheumatologist who is new to me. She is very nice and had a bunch of good suggestions. She was also very good at explaining things to me. I think this will work out in the long run. I go back and see her in three months.
My problem is I have been on injection methotrexate for barely three months and am now skipping doses because I am on antibiotics. With methotrexate, you need to build up a certain blood level to get the most medicinal effects from it. If you have been on it for a few years and need to go off it for a few weeks, its no big deal as your blood levels are ample. But if you are like me and only on it for a short period of time, I will lose some of the benefit I have built up and may have issues in the meantime. I can't go back on it until the middle of next week.
Then I got my blood work done and left to go to work. No big deal. After leaving the hospital, I called my PCP's office to see what it took to get a note for the airline because I can't fly this weekend as planned - both ears are clogged. I was on hold driving to work (with headset) at 1015am. Finally, someone came back on the phone and said can you come in at 1115am? Otherwise, it would be Thursday afternoon.
So I made a (legal) U-turn, made a quick stop at Target, and went back to the hospital to see my PCP's nurse practitioner. I got my note for the airline and finally got to work at 1215 pm. That was a lot of driving.
I did get to the gym but only for a short workout.
Today's goal is for a calmer day with less driving.
I could barely drag myself out of bed as I was so tired. I went to see my rheumatologist who is new to me. She is very nice and had a bunch of good suggestions. She was also very good at explaining things to me. I think this will work out in the long run. I go back and see her in three months.
My problem is I have been on injection methotrexate for barely three months and am now skipping doses because I am on antibiotics. With methotrexate, you need to build up a certain blood level to get the most medicinal effects from it. If you have been on it for a few years and need to go off it for a few weeks, its no big deal as your blood levels are ample. But if you are like me and only on it for a short period of time, I will lose some of the benefit I have built up and may have issues in the meantime. I can't go back on it until the middle of next week.
Then I got my blood work done and left to go to work. No big deal. After leaving the hospital, I called my PCP's office to see what it took to get a note for the airline because I can't fly this weekend as planned - both ears are clogged. I was on hold driving to work (with headset) at 1015am. Finally, someone came back on the phone and said can you come in at 1115am? Otherwise, it would be Thursday afternoon.
So I made a (legal) U-turn, made a quick stop at Target, and went back to the hospital to see my PCP's nurse practitioner. I got my note for the airline and finally got to work at 1215 pm. That was a lot of driving.
I did get to the gym but only for a short workout.
Today's goal is for a calmer day with less driving.
Time passes by
I used to keep a running list of things I wanted to ask my doctors at upcoming appointments. For instance if a doctor said 'we need to keep an eye on that' I would write it down and then next time I went to see them, I would ask about that.
Next week I think I have my annual physical. I am scrambling to put together my list of questions. I started it last night, lost the piece of paper (already) and thought up a bunch more things to ask about. And will now have to start another list on another piece of paper (that I can potentially lose as well). I may be up to a notebook by the time my appointment rolls around sometime next week.
I don't even know when my appointment is. It is sometime soon. If I could find my phone (probably with my list) I could look it up.
This is a complete turnabout from my stress level of say five years ago.... which leads me to realize that my blog is now six years old and that means I am six years from my breast cancer diagnosis. This is blog post 2152 to be exact. How the hell did that happen?
A lot has happened in that time period. A few hundred doctor appointments, five surgeries, a billion or two procedures, blood tests, and things that might make me 'feel a pinch' later I am still alive and kicking. Sort of, right now my back hurts so much I can barely breathe and I'm waiting for a pain pill to kick in so I can go to work.
I still have at least ten doctor appointments scheduled for the coming three months - that's been the standard for the past six years. (The hospital appointment lists show a maximum of ten appointments so I never know how many more than that I have upcoming.) I still have way too many doctors I see on a regular basis. Now I just have to figure out what I am going to talk to them about when I see them. I have to make a list or ten.
Next week I think I have my annual physical. I am scrambling to put together my list of questions. I started it last night, lost the piece of paper (already) and thought up a bunch more things to ask about. And will now have to start another list on another piece of paper (that I can potentially lose as well). I may be up to a notebook by the time my appointment rolls around sometime next week.
I don't even know when my appointment is. It is sometime soon. If I could find my phone (probably with my list) I could look it up.
This is a complete turnabout from my stress level of say five years ago.... which leads me to realize that my blog is now six years old and that means I am six years from my breast cancer diagnosis. This is blog post 2152 to be exact. How the hell did that happen?
A lot has happened in that time period. A few hundred doctor appointments, five surgeries, a billion or two procedures, blood tests, and things that might make me 'feel a pinch' later I am still alive and kicking. Sort of, right now my back hurts so much I can barely breathe and I'm waiting for a pain pill to kick in so I can go to work.
I still have at least ten doctor appointments scheduled for the coming three months - that's been the standard for the past six years. (The hospital appointment lists show a maximum of ten appointments so I never know how many more than that I have upcoming.) I still have way too many doctors I see on a regular basis. Now I just have to figure out what I am going to talk to them about when I see them. I have to make a list or ten.
Off to play doctor
No, not like that! Get your minds out of the gutter!
I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.
My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up by two weeks because of the pain.
My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.
But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."
I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.
I have an appointment this morning with my pain management doctor. My back has been hurting a lot recently. Having been through the medical school and now having the degree called 'Professional Patient PW' (PW=Perpetually Waiting), I am ready to tell my doctor the next steps,unless he has some wizardry that I don't know about.
My back has caused significant amounts of pain recently which immobilizes me and makes me cranky. We were going to wait six months between visits but I opted for four months and then called and moved my appointment up by two weeks because of the pain.
My theory is that the last 'fun' procedure which involved heated needles in my spine has worn off (meaning the pesky nerves have grown back) and its time to schedule a new one. I am not sure what there is that can be done in the meantime and I know it can take up to 6 to 8 weeks to get it scheduled as well.
But I hope the appointment will go l ike this:
"How are you doing?"
"Not well, my back hurts a lot. I think the last treatment wore off."
"Okay, lets see if we can schedule it for next week."
I know it won't be that simple. It will involve him bending me to see how much he can make my back hurt and poking and prodding. But I hope it ends up the way I want it with an appointment soon. Maybe he will even have a short term solution for the interim.
The Best New Doctor Reaction Yet
He laughed.
I went to see a physicians assistant in the rheumatology department yesterday about the bump on my arm (not on a log). He was a very nice man and spent some time talking to me.
He said what I have is probably a ganglion cyst and he could stick a needle in it and drain it but it might come back. I said lymphedema arm. He said 'oops, no needle'. I said when I move my thumb around it makes it hurt more, he said I could give you a thumb splint but that would make your arm swell up.
So we left it that I will monitoradmire it, and if it does become problematic, I would be referred to a surgeon to see if there was anything else that could be done. On the other hand, sometimes they go away on their own, or disappear and then reappear. But its not arthritis and its not cancer so what they hell, I can stick with it.
Then he asked me how I was doing with the RA. I told him about being allergic to both plaquenil and prednisone. Prednisone is often given to RA patients to give the other treatments a boost to get them started or during a flare to help get it under control. Not for me.
I also said that I can't take the organics like Humira, Enbrel, etc because of my cancer history. And I'm allergic to benadryl and the cillins as well.
He laughed and said 'oh you are a great patient to treat!'. I have multiple ailments, can't take many regular treatments, and have allergies that pop up all the time.
Yes I could see the humor in it. But at least I didn't have to scrape a new doctor off the floor for once upon hearing all my medical history..
I went to see a physicians assistant in the rheumatology department yesterday about the bump on my arm (not on a log). He was a very nice man and spent some time talking to me.
He said what I have is probably a ganglion cyst and he could stick a needle in it and drain it but it might come back. I said lymphedema arm. He said 'oops, no needle'. I said when I move my thumb around it makes it hurt more, he said I could give you a thumb splint but that would make your arm swell up.
So we left it that I will monitor
Then he asked me how I was doing with the RA. I told him about being allergic to both plaquenil and prednisone. Prednisone is often given to RA patients to give the other treatments a boost to get them started or during a flare to help get it under control. Not for me.
I also said that I can't take the organics like Humira, Enbrel, etc because of my cancer history. And I'm allergic to benadryl and the cillins as well.
He laughed and said 'oh you are a great patient to treat!'. I have multiple ailments, can't take many regular treatments, and have allergies that pop up all the time.
Yes I could see the humor in it. But at least I didn't have to scrape a new doctor off the floor for once upon hearing all my medical history..
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.
A Lull in the Action
Yes I am enjoying a lull in the action. The action of doctor appointments that is.
I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).
What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!
Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful because I need a a day of rest between exercise. More time paying attention to the cat. I can unless he is sleeping. He's old and needs his 22 hours of naps per day. Quality time with my husband.
Maybe in my absence the hospital will renovate the ladies room in the lobby. It does need a bit of updating - probably because it is the most used room in the building.
But in the month of May, sadly, I have one of 'those' days where I have test, test, doctor appointment. I will blissfully ignore it between now and then. Ignorance is bliss in this case. Its also a case of avoidance.
I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).
What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!
Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful because I need a a day of rest between exercise. More time paying attention to the cat. I can unless he is sleeping. He's old and needs his 22 hours of naps per day. Quality time with my husband.
Maybe in my absence the hospital will renovate the ladies room in the lobby. It does need a bit of updating - probably because it is the most used room in the building.
But in the month of May, sadly, I have one of 'those' days where I have test, test, doctor appointment. I will blissfully ignore it between now and then. Ignorance is bliss in this case. Its also a case of avoidance.
Avoidance mode
Today I am in avoidance mode. I have one of 'those' appointments today. I don't feel like talking about it, I'm a tiny bit stressed so I am going to the gym. Depending on the result, I may talk more about it later.
I'm also avoiding thinking about the stupid snowstorm on Friday might ruin my social life on Saturday. Grr.
No need for a stiff upper lip
A recent study in the UK shows that one of the reasons that the reason for the higher cancer death rates is that people are reluctant to go to their doctor with symptoms. Their reasons are that they do not want to waste their doctor's time or they were embarrassed to tell someone about their symptoms.
If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.
I can understand sometimes its embarrassing to tell someone about something very personal. You can always write your doctor a note.
There is no reason to delay going to the doctor. Your body is very important and you need to treat it appropriately. What is a good reason for not going to the doctor? I can't think of one. Trust me, I am the professional patient with more ailments that you can imagine and I hate going to the doctor but I do because it makes me feel better in the end.
If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.
I can understand sometimes its embarrassing to tell someone about something very personal. You can always write your doctor a note.
There is no reason to delay going to the doctor. Your body is very important and you need to treat it appropriately. What is a good reason for not going to the doctor? I can't think of one. Trust me, I am the professional patient with more ailments that you can imagine and I hate going to the doctor but I do because it makes me feel better in the end.
Rules for my doctors
Somewhere in the depths of my blog (if you blog for over five years I think it has depths) I have written about this before that I have rules for my doctors.
Yesterday I saw my rheumatologist, Dr. P. She was recommended to me by Dr G, my pain management doctor. It is my three month follow up (which will be the story of the rest of my life with RA) to see how treatment is progressing. I have been a bit stressed about this RA stuff and came prepared with list of questions to help me destress and further my coping with this new ailment.
We discussed RA and fibromyalgia and pain management and what I need to cover with Dr G next week. She was concerned about my fatigue levels and wanted to run some more blood tests. I was surprised to find out which pains are not RA and which are probably fibro - tips of fingers are fibro not RA. Foot pain is probably fibro. Hip pain on the outer hip is probably fibro. I have lots of notes to talk to Dr G about.
Dr P answered all my questions. She is happy with the progress of treatment but says its still active so we need to up my dose of methatrexate to get it under control.
She asked me my opinion of self injection. I said my husband (the saint) had agreed to give me my injections if we get to that. I was very pleased to hear there are non injection forms of medications available. And she said she would make a note in my file about me and needles.
We did discuss long term prognosis and she assured me that with new treatments the goal is to get the disease into remission so that I can live pain free for life and not end up with crippling disfigurement. This is the current treatment expectation. This made me MUCH happier.
I was beginning to think that this could be manageable and I could see working with her in the long term. I was feeling more relaxed about this whole thing. She dropped her bombshell. She is leaving the hospital at the end of March. WHAT!!!!!!!!!!!!!
That is not allowed in the rules for my doctors. Doctors that I like I never allowed to leave or retire. One of the reasons I liked her so much is she is younger than me so chances were that she would be with me for decades. Dr G is much older and I hope he will never retire.
Its completely understandable as she has two small children and traffic in the evenings can make her homeward commute to take 90 minutes.
The hospital expects to hire someone in the spring. Normally I would alternate a visit with nurse practitioners with the doctor every three months. The plan is I will see her nurse practitioner in three months. Then three months after that I will see the new doctor.
But I have a plan. When I see Dr G, who sent me to Dr P in the first place, I will ask him his opinion of who to see in rheumatology or if I should wait to see who the new hire is. I can be sneaky when my health is on the line - especially when my doctor breaks the rules.
Yesterday I saw my rheumatologist, Dr. P. She was recommended to me by Dr G, my pain management doctor. It is my three month follow up (which will be the story of the rest of my life with RA) to see how treatment is progressing. I have been a bit stressed about this RA stuff and came prepared with list of questions to help me destress and further my coping with this new ailment.
We discussed RA and fibromyalgia and pain management and what I need to cover with Dr G next week. She was concerned about my fatigue levels and wanted to run some more blood tests. I was surprised to find out which pains are not RA and which are probably fibro - tips of fingers are fibro not RA. Foot pain is probably fibro. Hip pain on the outer hip is probably fibro. I have lots of notes to talk to Dr G about.
Dr P answered all my questions. She is happy with the progress of treatment but says its still active so we need to up my dose of methatrexate to get it under control.
She asked me my opinion of self injection. I said my husband (the saint) had agreed to give me my injections if we get to that. I was very pleased to hear there are non injection forms of medications available. And she said she would make a note in my file about me and needles.
We did discuss long term prognosis and she assured me that with new treatments the goal is to get the disease into remission so that I can live pain free for life and not end up with crippling disfigurement. This is the current treatment expectation. This made me MUCH happier.
I was beginning to think that this could be manageable and I could see working with her in the long term. I was feeling more relaxed about this whole thing. She dropped her bombshell. She is leaving the hospital at the end of March. WHAT!!!!!!!!!!!!!
That is not allowed in the rules for my doctors. Doctors that I like I never allowed to leave or retire. One of the reasons I liked her so much is she is younger than me so chances were that she would be with me for decades. Dr G is much older and I hope he will never retire.
Its completely understandable as she has two small children and traffic in the evenings can make her homeward commute to take 90 minutes.
The hospital expects to hire someone in the spring. Normally I would alternate a visit with nurse practitioners with the doctor every three months. The plan is I will see her nurse practitioner in three months. Then three months after that I will see the new doctor.
But I have a plan. When I see Dr G, who sent me to Dr P in the first place, I will ask him his opinion of who to see in rheumatology or if I should wait to see who the new hire is. I can be sneaky when my health is on the line - especially when my doctor breaks the rules.
Self Education
My week ends with a trip to my rheumatologist to discuss progress or lack of progress in treating my rheumatoid and getting it under control. I have had two other appointments with her. The first one was 'we really do not think you have RA but will figure it out and get it under control.' The second visit was 'even though I didn't think so, you do have RA and fibromyalgia so let's start treating it'.
Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not sure I know that much about.
I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.
I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.
Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not sure I know that much about.
I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.
I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.
The cliff moved
Yesterday I had an appointment with my medical oncologist to finalize me going off Femara (after 5 1/2 years of hot flashes - jealous?). I have been debating/stressing/agonizing over this for a few weeks or months. I expected to have the big conversation yesterday.
I was wrong.
My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.
She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.
However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still might be benefit to staying on Femara for a while.
So we ended the appointment with:
She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.
In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.
The cliff moved. Damn. I feel like a politician.
I was wrong.
My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.
She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.
However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still might be benefit to staying on Femara for a while.
So we ended the appointment with:
She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.
In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.
The cliff moved. Damn. I feel like a politician.
The Doctor Shortage
As baby boomers (of which I am one even though I am only 37) age, they need more care. Doctors are also aging out and retiring or working part time. Some doctors are leaving practice for research or other positions where they do not have to worry about malpractice lawsuits. Medical schools are not producing enough residents to fill the void. The prediction is a shortage of 90,000 doctors in the next 8 years.
If you compound this with healthcare reform where more people will be insured and seeking medical care, who is going to care for them? Granted there are provisions for medical training as part of health care reform to produce more doctors. And you do not need a physician to be your primary care, it could also be a nurse practitioner or other trained person. But sometimes you need a doctor.
It doesn't seem like a big deal until you are trying to see your physician and you are told they are booking out 3-6 months. Then the reality sets in.
I have many doctors (in case you hadn't noticed). They are actually very good about getting me in. The way it usually works, is when I see them, we decide when I will next see them and schedule the visit for three month follow ups (if I'm lucky). My rheumatologist is impossible to get into see in less than two months. But she will call and help me by phone if needed.
Where I am treated they are pretty good about getting patients in to see their primary care in a few days or any doctor on the same day. This is to avoid trips to the ER. They also have a walk in clinic (if you don't mind waiting in line) on a first come first served basis. Some specialists can take a little longer but you can call and ask for cancellations regularly.
However as a patient, we need to be aware of this looming problem of lack of doctors. What are you going to do if you wake up one day and can't move, or have shooting pains, or a stroke or something? If you work on it now and say 'what can I do in case I have this problem?' there may be ways to avoid it.
Granted we do not know if we are going to need a cardiac specialist or neurosurgeon or whatever in six months. But we can look at how we structure our care now. Is your care disjointed - with one doctor here, another there, and another elsewhere? If you need a specialist where is your doctor most likely to refer you? To a doctor in the same building or to a hospital 30 miles away? How easy is it to get to see a doctor there?
Again as part of being a patient, we need to manage our care and manage up to make sure there are treatment options available as we age and our care gets more and more complicated.
Nope, rule changing is not allowed
I'm sorry but rule changing is not allowed. We have been good patients and gone for yearly checkups and now they want to change the rules. This is not allowed. I will not allow it. I have been good and now they want ot change the rules and say I have been bad. Not acceptable.
A Danish study recently concluded that regular health checkups may not be doing any good and may in fact be doing harm. The claim is that regular checkups do not decrease deaths from cancer or heart disease and also cause more testing, false positive and negative tests, and emotional and financial stress for the patients.
Hmmm.... Well I'm not agreeing with that one anytime soon. My cancers were both found by medical professionals or tests so I'm glad I had regular check ups.
"The authors conclude that more research is needed to target better methods for identifying disease and to further explore the possible misleading and harmful effects of general health check-ups."
So what this is really telling me is that its not the health checkups that are the problem is that research is needed to come up with better ways to diagnose ailments. So all the researchers did is guarantee themselves their jobs. I'm still going to my regular check ups. No rule changing allowed with out basis.
A Danish study recently concluded that regular health checkups may not be doing any good and may in fact be doing harm. The claim is that regular checkups do not decrease deaths from cancer or heart disease and also cause more testing, false positive and negative tests, and emotional and financial stress for the patients.
Hmmm.... Well I'm not agreeing with that one anytime soon. My cancers were both found by medical professionals or tests so I'm glad I had regular check ups.
"The authors conclude that more research is needed to target better methods for identifying disease and to further explore the possible misleading and harmful effects of general health check-ups."
So what this is really telling me is that its not the health checkups that are the problem is that research is needed to come up with better ways to diagnose ailments. So all the researchers did is guarantee themselves their jobs. I'm still going to my regular check ups. No rule changing allowed with out basis.
Medical adventures continue
My life is a series of medical adventures. Somehow there is a giant gap in my calendar for the month of December (but don't tell anyone because I might jinx myself here). But I am sure that will change before then.
Yesterday I went to one of my newer doctors for a conversation, not an exam, to discuss treatment options. I was given a choice of two courses of treatment. One was for a milder program which could take a few months to get going but has fewer long term side effects. The other choice would kick in sooner but had the potential for more side effects. I opted for option one with some steroids to start feeling better sooner.
That was a BAD choice. One of the potential side effects of the steroids is they 'may' cause sleeping problems. Yes they do. We went out last night (and saw Weird Al Yankovic - if you haven't seen him, I recommend him as it was a great show). We didn't get into bed until after 11. I was exhausted and couldn't sleep. I finally did sleep but badly. Guess what? I won't be taking the steroids again and will call my doctor on Monday.
Then I also go back to my back pain doctor for more conversations on Monday. I was supposed to wait another few weeks to see him but he actually had a cancellation for Monday. So that will be two doctor conversations on Monday.
My life really is a series of medical adventures. My calendar is dominated by doctor appointments.
Yesterday I went to one of my newer doctors for a conversation, not an exam, to discuss treatment options. I was given a choice of two courses of treatment. One was for a milder program which could take a few months to get going but has fewer long term side effects. The other choice would kick in sooner but had the potential for more side effects. I opted for option one with some steroids to start feeling better sooner.
That was a BAD choice. One of the potential side effects of the steroids is they 'may' cause sleeping problems. Yes they do. We went out last night (and saw Weird Al Yankovic - if you haven't seen him, I recommend him as it was a great show). We didn't get into bed until after 11. I was exhausted and couldn't sleep. I finally did sleep but badly. Guess what? I won't be taking the steroids again and will call my doctor on Monday.
Then I also go back to my back pain doctor for more conversations on Monday. I was supposed to wait another few weeks to see him but he actually had a cancellation for Monday. So that will be two doctor conversations on Monday.
My life really is a series of medical adventures. My calendar is dominated by doctor appointments.
So what do your doctors write about you?
I have had some infrequent opportunities to see my medical records. Partly by happenstance and partly by choice. Some of it is crystal clear and makes sense and some of it requires a decoder ring - that my surgeon provided at the time. I found it interesting.
There was a recent voluntary study (because we need more studies) where doctors shared their notes regularly with their patients who wanted them. They found better compliance with doctor orders among other things.
I know I can go to the hospital where I am treated and get a specific test result for no charge but if I want my full records it will basically cost me $100 for the first 100 pages and then $0.36/page after that. With my medical file, I'm probably looking at around $1000 for the whole thing. That's just fine. They can stay there.
But I do have a friend who found out what her doctor wrote about her in her medical record - it was something along the lines of 'she will never lose weight because on weekends she drinks a lot and pigs out'. Seriously that's what the doctor wrote. That is now her former doctor. And she got a patient advocate to help in getting that removed from her permanent medical record.
I am sure my doctors write things like "paranoid, chronic complainer, pushy, bitchy, hypochondriac, full of mysterious ailments who uses more than her share of the medical system" in my medical file. Actually I don't think they write that. I am sure its a very fat file hogging lots of disk space. But most of its probably in doctor speak and I didn't get the decoder ring.
Would a written note at the end of each appointment help my chemobrain/fibro fog memory remember what I am supposed to do and why help me? Probably but I don't need more paper in my life. And I don't want to have to wait until they doctor gets around to writing the notes either.
Things that go bump in the night
The cat and my husband didn't move a muscle. I think it was a bird or large bat (biggish thud) with a poor sense of radar and/or vision. Yes it was the middle of the night but the house is light green so you think it would stand out to flying things. It was probably only a foot or two from the corner of the house... (Why am I thinking of 'George of the Jungle' who couldn't swing from tree to tree, but went into the tree instead?)
This is me in avoidance mode this morning. I have a doctor appointment today I am not ready to discuss. So I will worry about things that go bump in the night instead. And hope there isn't a little suprise waiting outside on the patio for me...
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