Fed Up with the Medical System: Call to Action

General
1

Sometimes I’m not sure what is more damaging…the disease or those that supposedly are qualified to treat it. I just saw my rheumatologist a few weeks ago and as always it’s a mixture of frustration, depression, and anger at the end of the visit. I force myself to go because I tell myself it’s important to have some monitoring of the illness than none at all, and also because in order to get refills on my medications I pretty much don’t have a choice. I feel like my health comes down to an insurance, bureaucratic technicality, and I’m sick of it. I know doctors aren’t Gods and the body is really complicated but can’t they tell you something…anything! I’m tired of the stab in the dark mentality because my body ultimately is the pin cushion they’re experimenting on.

So then you try to be your own doctor. You read. You research. But, at the end of every article and website there seems to be the same dead end. It’s always the same generic information or phrasing that tells you something and absolutely nothing. “Lupus effects the immune system…” Really?! Tell me something I don’t know, or there is always the common disclaimer and recommendation to consult your doctor. Ha! If all I had to do was consult my doctor in the first place I wouldn’t be trolling the web for hours in desperation of any specific answer or helpful information.

Then of course there is always the same advice that you already know like eat right, exercise, get a good nights rest. Okay, great and how do I do that? It’s clear who ever writes this BS clearly doesn’t have health issues because they would realize the catch 22. Maintaining healthy habits is a lot easier when you are healthy to begin with but eating right which largely means making your own meals also means you need the energy to do so. Exercise, again means having a certain amount of energy in the first place, stamina, strength and so on. Some days, exercise for me is getting up and going to the bathroom. Sleep, well who gets a good nights sleep these days anyway? Everyone is overworked, underpaid, and stressed to the max. Then you add pain and side effects from medications and it’s nearly impossible to sleep.

It feels like the only real help is the kind you can’t Google search like family and friends to help when you’re at your worst. If you don’t have that…if you can’t cut back on hours at work or are barely getting by financially and have no real safety net then what do you do? I read some of your stories and I think my God how are they doing it? I wish I could give that person real advice to help but then I’m going through similar problems with no real answer. So during these times I try to rely on my ingenuity to get by the best I can but I also realize that means I can’t do it alone. We need to pull our resources together so that maybe we can actually help make a difference with this illness!

Medicine is so much more than a daily pill, but unfortunately figuring out the best medicine is complicated and when it seems like there are no other answers doctors just add another prescription to the mix. I can’t tell what is a symptom and what is a side effect anymore. I don’t know what is helping and what may be significantly causing more harm. I think tracking the symptoms is the most important but again it’s hard because there are so many. What do you track and how? Most of us have fatigue every day so is it really worth writing down unless there are actual measurements that make recording it useful later on like pacing activities, triggers, etc.

If you have any resources or personal strategies that you find really helpful or maybe there is something specific I can help with please respond.

2

My only defense against the doctors is to stay far away from them and their prescription pads, its been just over 3 years now, I don't recommend this for anyone, I'm doing better without the doctors and drugs, its not a perfect solution by any means and not one I encourage to anyone else, its just what works for me.

3

I am still kinda developing how I track things, but here is what I have so far. I hope it's helpful!

I bought a weekly/monthly planner from the office store. It has tabs for each overall month, and between are the pages to put stuff for individual days. Mostly I use the month overlook, but I do use the other pages for more specific things, like major events that impacted things (getting a tooth pulled, let's say), or what medications were adjusted and how. But on the month overview page, this is how I use it:

Each day I put down relevant info in the square. If it's relevant, it gets put in. I'll list each symbol and tell you what it indicates. At the bare minimum, each day will have a color dot and a number to indicate ibuprofen/tylenol taken.

RED - YELLOW - GREEN -- I use colored pencils to mark a circle of the proper color for that day. The color indicates quality of life for that day. Green means I could do everything I wanted to do without any real fuss or problem. (Love green days!) Yellow is whenever I struggle a little. If anything presented a significant issue, even if it was dealable, that's a yellow day. Red days are when I am unable to get anything done, and generally spend all day curled in a chair or in bed. For me, a good indication of what color the day should be is how I feel going up and down the stairs in our house. If I'm a bit slow and tired or creaky going up and down, that day is a yellow. If I can't hardly manage them at all, it's a red day, etc. (I have been known to split the colors if the first half of the day is dramatically different than the second half.)

Beside the color circle are two numbers separated by a dash. The first number indicates how many times I took my ibuprofen dose, and the second how many times I took my tylenol arthritis dose. I always include this, because it indicates how effective the doses were or weren't. If I have a green day without any pain meds, that means it was a REALLY good day. A green day with max doses means I did have a little trouble, but was completely functional regardless. You get the idea.

Below the circle and the two numbers there might be any of the following indicators (or none):

A simple butterfly-shape - had a malar rash that day

A cloud shape - had storms that day (helps me see impact of weather on my symptoms)

a sun shape - spent significant time in the sun that day

a star shape - a change in my meds began

a star shape in a "no" circle - meds change ended

T - tired that day, might have napped

E - exhausted, had to nap significantly, wasn't rested afterwards

A - physically active that day

B - busy day

S - stressful day

M - malaise, overall didn't feel well

P - painful, usually meaning I still had significant pain while under a dose of ibuprofen or tylenol

F - fever, and if the temp is significant, I will add it on the larger day page

N - nausea that was more than just a slight discomfort

C - creaky, not quite full on painful, but impacting my ability to move (I don't use this one as often as I should, tbh.)

H - headache/migraine, and indicates I took Excedrin for it

PA in a circle - a pain attack, sometimes with a number beside it to indicate the pain level it reached

a "no" circle by itself - for whatever reason, I didn't take my meds (aside from the prednisone and blood pressure meds)... rheumy said this is okay if I need to, and I have done this when having serious nausea problems

At the very bottom I write a tiny number, if there is one to indicate. This shows how many minutes I spent on my eliptical that day. I'm trying to get myself more active, and so that gets included, since I want to be sure that it doesn't impact my symptoms too severely. I'm careful about it, so often that number is only a 5 or a 10.

I also put a single dot in one corner to indicate when I'm on my period. It's helpful for doc appointments and to see if anything correlates with my cycle.

This list is not as complete as it could be, and I"m sure there are symptoms others would like to track that would need their own indicators, but perhaps this gives you the idea of how I manage it. It allows me to flip open to a month and get a quick look at how things were for that month. Did I have more than one green day a week? Did I rely heavily on my pain meds? Was I having migraines daily? I'm not sure it would help separate symptoms from side affects, but it does help to give tangible evidence as to how things ACTUALLY happened over time. I have difficulty in looking back objectively otherwise. I tend to feel like recent weeks have been however I feel NOW. If I feel good now, the recent weeks have been pretty decent... if I feel bad, I think I've been that way a while. Keeping track this way helps give me a better reference than my current state. And YES, I keep a list of what each symbol/letter means, or I'd lose my mind trying to remember... does S mean stress or sleepy? Hehe.

I WILL say two things about keeping track this way. Firstly, it's best to mark down how a day was that evening before bed. Either that, or first thing the next morning when you get up. Otherwise, you forget how much of this or that you took, forget to add the headache or the fever... I'm terrible at that. So you gotta keep on top of it.

Secondly, it can get... grinding. It's hard sometimes to keep such careful track of things. I actually ended up taking the whole month of May off from tracking things, cause I was fed up with it. It isn't helpful, but sometimes you just gotta give yourself room.

I hope this is helpful and gives folks ideas on how they can track their symptoms, or on how to adjust how they do it currently. I'm always eager to hear how others manage it too, as the red/green/yellow idea was actually from someone on the board here!

4

MT411, I feel you. Wow, you really summed it up. Thanks for getting up in my head like that. :-)

Thanks Talencia. This is really helpful to me.

5

I have a much different approach. The first thing is I have an autoimmune disease. Its diagnosed by a set of criteria that are standard. Its incurable. There is no secret cure or treatment out there. Should a cure come around, or a highly effective new treatment be developed, a miracle drug etc. Everybody will know. It won't be an obscure post on page 100 of a google search.

Secondly pain charts, and the like are entirely subjective. I learned long ago that the only thing that matters is what I can do. The only way I know that is to concentrate on doing it. If I take my grandkids fishing I could care less what my symptoms are. If I can't take them then I care. If I complete less of either of my 2 daily workouts, I care. My goal is to do more.

Its darn easy to be defined by the disease. The instant that happens, you are in trouble . Everything you do from that point forward is determind by the disease. I have a disease, the disease does not have me.

6

Hey,

I love the red, yellow, green system! That is a really good and simple way to see how you are feeling over a long period. I think what is so hard about this illness is that there are so many symptoms that come and go and I have MCTD so I have an overlapping of many symptoms. There are some that you really notice obviously like when you’re in pain, or feel like you have the flu, and of course fatigue. But then there are symptoms that really don’t impact my life but can be indications of a need to change meds or something that I should mention to my doctors like hair thinning, nails (appearance), Raynaud’s etc.

I’ve tried something similar to your system but I created a template with all the symptoms down one column (vertical) and across the top I put days 1 through 31. Then I was planning to mark an X in each box for each day to track symptoms. The only problem I had was fitting everything on one page. The tiny boxes on the template didn’t allow me to mark the details like triggers, meds, etc.

I’m a “type A” person so logical organizing is really important for me but sometimes I’m a bit too neurotic about it. I think if you have a sheet that says what different symbols or colors mean and a monthly/daily tracking system then that is a good way to go.

I copied a link below that is good for measuring and tracking. I really like this site because they give multiple tracking systems that work for different people:

http://www.partnersagainstpain.com/



Talencia said:

I am still kinda developing how I track things, but here is what I have so far. I hope it's helpful!

I bought a weekly/monthly planner from the office store. It has tabs for each overall month, and between are the pages to put stuff for individual days. Mostly I use the month overlook, but I do use the other pages for more specific things, like major events that impacted things (getting a tooth pulled, let's say), or what medications were adjusted and how. But on the month overview page, this is how I use it:

Each day I put down relevant info in the square. If it's relevant, it gets put in. I'll list each symbol and tell you what it indicates. At the bare minimum, each day will have a color dot and a number to indicate ibuprofen/tylenol taken.

RED - YELLOW - GREEN -- I use colored pencils to mark a circle of the proper color for that day. The color indicates quality of life for that day. Green means I could do everything I wanted to do without any real fuss or problem. (Love green days!) Yellow is whenever I struggle a little. If anything presented a significant issue, even if it was dealable, that's a yellow day. Red days are when I am unable to get anything done, and generally spend all day curled in a chair or in bed. For me, a good indication of what color the day should be is how I feel going up and down the stairs in our house. If I'm a bit slow and tired or creaky going up and down, that day is a yellow. If I can't hardly manage them at all, it's a red day, etc. (I have been known to split the colors if the first half of the day is dramatically different than the second half.)

Beside the color circle are two numbers separated by a dash. The first number indicates how many times I took my ibuprofen dose, and the second how many times I took my tylenol arthritis dose. I always include this, because it indicates how effective the doses were or weren't. If I have a green day without any pain meds, that means it was a REALLY good day. A green day with max doses means I did have a little trouble, but was completely functional regardless. You get the idea.

Below the circle and the two numbers there might be any of the following indicators (or none):

A simple butterfly-shape - had a malar rash that day

A cloud shape - had storms that day (helps me see impact of weather on my symptoms)

a sun shape - spent significant time in the sun that day

a star shape - a change in my meds began

a star shape in a "no" circle - meds change ended

T - tired that day, might have napped

E - exhausted, had to nap significantly, wasn't rested afterwards

A - physically active that day

B - busy day

S - stressful day

M - malaise, overall didn't feel well

P - painful, usually meaning I still had significant pain while under a dose of ibuprofen or tylenol

F - fever, and if the temp is significant, I will add it on the larger day page

N - nausea that was more than just a slight discomfort

C - creaky, not quite full on painful, but impacting my ability to move (I don't use this one as often as I should, tbh.)

H - headache/migraine, and indicates I took Excedrin for it

PA in a circle - a pain attack, sometimes with a number beside it to indicate the pain level it reached

a "no" circle by itself - for whatever reason, I didn't take my meds (aside from the prednisone and blood pressure meds)... rheumy said this is okay if I need to, and I have done this when having serious nausea problems

At the very bottom I write a tiny number, if there is one to indicate. This shows how many minutes I spent on my eliptical that day. I'm trying to get myself more active, and so that gets included, since I want to be sure that it doesn't impact my symptoms too severely. I'm careful about it, so often that number is only a 5 or a 10.

I also put a single dot in one corner to indicate when I'm on my period. It's helpful for doc appointments and to see if anything correlates with my cycle.

This list is not as complete as it could be, and I"m sure there are symptoms others would like to track that would need their own indicators, but perhaps this gives you the idea of how I manage it. It allows me to flip open to a month and get a quick look at how things were for that month. Did I have more than one green day a week? Did I rely heavily on my pain meds? Was I having migraines daily? I'm not sure it would help separate symptoms from side affects, but it does help to give tangible evidence as to how things ACTUALLY happened over time. I have difficulty in looking back objectively otherwise. I tend to feel like recent weeks have been however I feel NOW. If I feel good now, the recent weeks have been pretty decent... if I feel bad, I think I've been that way a while. Keeping track this way helps give me a better reference than my current state. And YES, I keep a list of what each symbol/letter means, or I'd lose my mind trying to remember... does S mean stress or sleepy? Hehe.

I WILL say two things about keeping track this way. Firstly, it's best to mark down how a day was that evening before bed. Either that, or first thing the next morning when you get up. Otherwise, you forget how much of this or that you took, forget to add the headache or the fever... I'm terrible at that. So you gotta keep on top of it.

Secondly, it can get... grinding. It's hard sometimes to keep such careful track of things. I actually ended up taking the whole month of May off from tracking things, cause I was fed up with it. It isn't helpful, but sometimes you just gotta give yourself room.

I hope this is helpful and gives folks ideas on how they can track their symptoms, or on how to adjust how they do it currently. I'm always eager to hear how others manage it too, as the red/green/yellow idea was actually from someone on the board here!

7

I definitely agree that there is no cure…maybe one day but the chances are like winning the lottery. So I do not put my faith in being “cured.” However, I do want to feel the best I can, as often as I can, and I think that means understanding symptoms. For instance, I know that I usually flare up more in the summer with the excessive heat, sun, air-conditioning, allergies, etc. There isn’t much I can do about that except avoid prolonged time outside. But other times like when it rains a lot and my muscles and joints hurt more I want to be able to look back and know it was likely because of the rain and not excessive activity or something I could change. I think my objective with tracking is more to help me with conscious awareness because sometimes we do things and don’t even realize the effect.

With time, as I know what is normal for me the tracking will be less intense, but for now it seems like the best way to go. As far as doctors and medicine…well even in the information age the trouble is there is too much information so sorting obscure info so everyone is aware isn’t that simple, although, this is coming from personal experience with doctors and other issues. I’ve been put on medication trusting my doctor that it was safe and ended up in the hospital. If I knew the side effects from the medicine that may have been “normal” but not safe then I would have never taken it. Unfortunately there was no warning on the medication guide, on the internet, or from my doctor when initially prescribing.


TJ1 said:

I have a much different approach. The first thing is I have an autoimmune disease. Its diagnosed by a set of criteria that are standard. Its incurable. There is no secret cure or treatment out there. Should a cure come around, or a highly effective new treatment be developed, a miracle drug etc. Everybody will know. It won't be an obscure post on page 100 of a google search.

Secondly pain charts, and the like are entirely subjective. I learned long ago that the only thing that matters is what I can do. The only way I know that is to concentrate on doing it. If I take my grandkids fishing I could care less what my symptoms are. If I can't take them then I care. If I complete less of either of my 2 daily workouts, I care. My goal is to do more.

Its darn easy to be defined by the disease. The instant that happens, you are in trouble . Everything you do from that point forward is determind by the disease. I have a disease, the disease does not have me.

8

You are correct. The first step to being your own advocate is being in charge. You do need to understand your disease and for some the charting etc is the way to go so long as you are the one in charge and the goal is moving forward.

But sometime we concern our selves with "too much" Medication is one of those areas. While its nice to know that 1 in 100,000 will turn purple, We see folks on these sites everyday freaked out that they are going to turn purple. While I would prefer not to be purple, or spend a few days in the hospital I think I would prefer that to the 100% certainty of what the disease will do left untreated.

If you look at the all too short list of medications helpful with lupus, Do want to take a guess which are the two that have the most serious side effects and with the most patients?? and guess which one is the most frequent cause of death?

Rather than draw it out Prednisone is the most serious with NSAIDs a very close second and of course Tylenol the killer. yet most of us pop these things pretty regularly and usually without a second thought These meds have an effect on everybodies liver and kidneys the two organs lupus is most likely to effect with the most sinister outcomes. I'm not saying you need to fear these meds but to keep in mind hind site is 20-20. If the meds you tried out had worked out which had a far lower chance of complications than the NSAIDS, it would have been wonderful.....

Learning your body absolutely. Everybody with chronic disease will develop a new normal. Realizing that it is in fact Normal no matter how much you would prefer it to be different is critical.



MT411 said:

I definitely agree that there is no cure…maybe one day but the chances are like winning the lottery. So I do not put my faith in being “cured.” However, I do want to feel the best I can, as often as I can, and I think that means understanding symptoms. For instance, I know that I usually flare up more in the summer with the excessive heat, sun, air-conditioning, allergies, etc. There isn’t much I can do about that except avoid prolonged time outside. But other times like when it rains a lot and my muscles and joints hurt more I want to be able to look back and know it was likely because of the rain and not excessive activity or something I could change. I think my objective with tracking is more to help me with conscious awareness because sometimes we do things and don’t even realize the effect.

With time, as I know what is normal for me the tracking will be less intense, but for now it seems like the best way to go. As far as doctors and medicine…well even in the information age the trouble is there is too much information so sorting obscure info so everyone is aware isn’t that simple, although, this is coming from personal experience with doctors and other issues. I’ve been put on medication trusting my doctor that it was safe and ended up in the hospital. If I knew the side effects from the medicine that may have been “normal” but not safe then I would have never taken it. Unfortunately there was no warning on the medication guide, on the internet, or from my doctor when initially prescribing.