I am in pro active ballistic mode. I need to be able to show my doctors first hand what my movement disorder, tremors, rashes, swellings, spasms, and more are like, Describing them seems to go in one ear and out the other.
For those of you who are good at documenting these kinds of things, what would you suggest and share as tips and tricks? I do have a digital camera with a 10 second time delay, will also take short movie clips. I wish to collect them all on disc and hand to each doctor. Picture is worth a 1000 words right?
Thanks in advance for any help you can give. I'm feeling unheard by my care TEAM, like they all have decided everything, I have no say so, but we have to work together to keep me going.
take care and may happiness be your constant companion.
If you have an Android phone or tablet or Iphone etc, their are a couple of good apps that don't cost much or are free. You can document any symptoms, take pictures and it will graph the data and you can either print it out or email it to your doctor, photos and all. Some also have place to document any type of aggravators, like sunlight. So you can record how much time you spent in the sun and then see if there is a trend in your resulting symptoms. Google "symptom tracker apps" and you should be able to come up with a few. If you don't have the technology, you could always start an excel spreadsheet to track symptoms and then you can put it into a graph. Hope this helps When you are feeling dismissed by the docs, just silently remember, you are not crazy and you have a right to be heard.
I am in agreement with the above. I think it is a good idea to document your issues to show them to the doctors. I have photographed things to show my doctor because sometime they happen a month away from my appointments and will not be there when I need them to be for that appointment. It has worked for me. I also have my rheumy’s email address and I send her pictures and ask her questions about issues that are happening and she will email me back with suggestions of even DX.
I’m a Nurse who works in an outpatient clinic with doctors every day and I also have antiphospholipid syndrome that I believe is progressing to lupus. I am trying to prove to my doctors about all my symptoms and your right, in one ear and out the other. What I have begun to do is keep a calendar on my cell phone and each day I document how I feel and symptoms I had. I also can take pics on my phone to show them or even in your case, a video if needed. During the appointment I have specific dates, symptoms, and pics of what it looks like to show them. I don’t think the disc will work. Honestly, if it gets put on their desk to view later, they will never find it again! (You think their handwriting is messy, you should see their desk!). Hopefully that will help. Good luck documenting.
Our own Jujubeee records her seizures, (got her husband to record it on tablet or computer camera) takes pics of her skin problems, etc. and put the videos on youtube, then onto her blog, then in the doctor's office, they can just go to her blog to see the latest symptom she's talking about.
My dermy did that. He took my cell, took pics and saved. He then, instructed me to show the pics to my rheumy. It worked.
SherryK said:
I'm a Nurse who works in an outpatient clinic with doctors every day and I also have antiphospholipid syndrome that I believe is progressing to lupus. I am trying to prove to my doctors about all my symptoms and your right, in one ear and out the other. What I have begun to do is keep a calendar on my cell phone and each day I document how I feel and symptoms I had. I also can take pics on my phone to show them or even in your case, a video if needed. During the appointment I have specific dates, symptoms, and pics of what it looks like to show them. I don't think the disc will work. Honestly, if it gets put on their desk to view later, they will never find it again! (You think their handwriting is messy, you should see their desk!). Hopefully that will help. Good luck documenting.
Thanks everyone for the helpful suggestions. I'm so very frustrated with my primary care doctor, and my rheumy? won't waste the cost of another visit there. I tend to play down symptoms and ignore all but the squeaky wheel, and treat symptoms naturally. That said, in the last 2 weeks 5 new meds have been added, but I am told it doesn't matter why I have high blood pressure but to take the pills.
I took the pills, and started the increased dosage Monday. Is now early Friday morning, and have had several bouts of you are having heart attck symptoms, but it's not that. It is how my body handles high blood pressure meds, this time old fashioned clonidine. I was beginning to think "it's all in my head" but not so. Th last episode, 30 minutes long, woke me from a solid sleep.
I think living clean and natural works best for me. I am so tired of beating my head against a brick wall, attempting to get help. We are going to have to suck it up, and pay out of pocket for natural and holistic care that helps me.
And, I am going to find my joy, stop letting my health issues stand in the way of living as well as possible. Not denial, but gonna show them who the Alpha is around here. If I need to dance buck naked under the full moon to feel better, then I will. Whatever works. Going to need to take pole dancing lessons - might trip myself up on my lovely new pink walking cane if I don't.
It's now officially Friday. gee only took me 30 something minutes to type this. Everyone have a lovely weekend. I need to rest up, rains coming and I get lock joints.
hugs,
Perplexed, not a butterfly yet, but pretty daggum batty.
It is okay to be in transition to becoming a beautiful, sought by all butterfly.
This I've learned, that there are out there so many physicians to choose from that there shouldn't be a dissatisfied patient. I try to do my homework (check qualifications, get referrals from other doctors, reputation (in the waiting room area, I talk to the other patients), and staff comments about the doctor. My health insurance representative said that with the new "Patients' Rights" affirmation, patients can interview each doctor to see which will they be retaining as their own, whom do they feel comfortable to meet their health care needs? Physicians will also choose whom they want as a patient.
That is a great idea! One idea is to draw out an outline of a body, you may find one online to print out.
Example: Code it with:
Throbbing Pain= X
Rash= R
Swelling=S
Just put the letters on the area of the body that has the issue. make several copies if you can for daily documentation or weekly. Whatever suites your needs during your flare ups.
I have one, I may try to scan & attach it. I use them for my neuro surgeon to have in my chart.
I just read all the other comments, new here, didn't see them first :) I love the idea of a daily checklist of signs & symptoms. Then you can actually have a visual with the body chart too, Photos & videos like several mentioned is a plus. Sorry to hear your having problems with MD's.
I can understand your feeling of flustration with your drs.i am having the same problem,my face has been numb sence dec of 2012 and it feels like electric shock going through it 24/7 and my tounge feels like it has been scalded and i have seen every kind of dr u can think of and i have gotten nowhere,it is so flustrating.if they had to deal with half of r pain i bet they would figure out something,good luck hope u find a good dr.
foreverhopeful, I am so sad you have to go through this, and have not found any help. One of my biggest helps has been a very skilled and well trained hands on physical therapist. He also helps people rehab from strokes, and serious injury falls like broken hips and fractured vertebrae, and works with many older medicare patients.
If you think a good physical therapist could help, please ask your primary care /team head doctor for a referral. And I believe you are brand new, so WELCOME! You have landed in a wonderful and supportive community of people, and we all understand facing challenges.
Beaker, I don't think I ever got the chance so WELCOME to a wonderful and supportive community. I have come to feel like they are a second family, even if separated by miles and even oceans.
I especially want to document my movement disorder, and times of paralysis - sometimes one arm will curl up into my chest, fist clenched, and be paralyzed for up to 18 hours. My rashes are not the usual butterfly across the face, but in other areas. One foot curls sideways when walking, etc. I think physical documentation would help them take me far more seriously, and help them.
My primary doctor isn't a good fit, so time to find someone who isn't so uncomfortable with a puzzle like me. I do have one specialist who I trust, and intend to pick his brain for doctors he would recommend. A great way to find someone respected by other medical people!
Beaker said:
I just read all the other comments, new here, didn't see them first :) I love the idea of a daily checklist of signs & symptoms. Then you can actually have a visual with the body chart too, Photos & videos like several mentioned is a plus. Sorry to hear your having problems with MD's.
Latina am late seeing this, thank you for the help! I am going to check with my husbands EAP at work, and see if there is anything they can help with. I know they have helped when we hit brick walls with some of our children's health quandaries. Raising a brood with lots of out of the ordinary needs teaches you much. I don't know why I have forgotten these resources and tools apply to me as well. Brain fog I guess. hugs, Perplexed.
Latina said:
Hi Perplexed,
It is okay to be in transition to becoming a beautiful, sought by all butterfly.
This I've learned, that there are out there so many physicians to choose from that there shouldn't be a dissatisfied patient. I try to do my homework (check qualifications, get referrals from other doctors, reputation (in the waiting room area, I talk to the other patients), and staff comments about the doctor. My health insurance representative said that with the new "Patients' Rights" affirmation, patients can interview each doctor to see which will they be retaining as their own, whom do they feel comfortable to meet their health care needs? Physicians will also choose whom they want as a patient.
Shelia - that is a fabulous idea. Thank you for sharing this. I have a video function on my digital camera, could keep it ready to go with the click of 2 buttons, and put a larger memory card in it. My movement disorder start to finish can last 2 hours per episode, goes body wide. Funny to watch, not funny to live. Have a lovely day! hugs, Perplexed
Sheila W. said:
Our own Jujubeee records her seizures, (got her husband to record it on tablet or computer camera) takes pics of her skin problems, etc. and put the videos on youtube, then onto her blog, then in the doctor's office, they can just go to her blog to see the latest symptom she's talking about.
Sherry thanks for the honesty and help! I hope you get the help you need, and perhaps never have to wear the lupus label. I am determined to do whatever I am able to help myself, keep my independence, but documenting in a way doctors will deal with and not bury on their desks is a great idea. Right now have had to all but give up driving, and no public transportation unless I could walk 3-5 miles to nearest bus stop. HA! If I was in that good of shape, would not be here asking for support. I spent my time, needed at home raising our children, and when you do not qualify for government disability, all other services are denied as well. Frustrating, but has my mind whirring as to how I could make a difference in our community, others here like me. Sorry to ramble. waiting 5 more hours so I can be outside in the shade and try some relaxation exercises. I need to be outside them same 4 walls, is good for me. ugs, Perplexed.
SherryK said:
I'm a Nurse who works in an outpatient clinic with doctors every day and I also have antiphospholipid syndrome that I believe is progressing to lupus. I am trying to prove to my doctors about all my symptoms and your right, in one ear and out the other. What I have begun to do is keep a calendar on my cell phone and each day I document how I feel and symptoms I had. I also can take pics on my phone to show them or even in your case, a video if needed. During the appointment I have specific dates, symptoms, and pics of what it looks like to show them. I don't think the disc will work. Honestly, if it gets put on their desk to view later, they will never find it again! (You think their handwriting is messy, you should see their desk!). Hopefully that will help. Good luck documenting.