Want to get control of your life again??? Get a BINDER!

Good morning family!!!

I mentioned the other day that I took all my labs and doctors notes and organized them and made some charts to bring my situation up to date and BOY DID IT MAKE A DIFFERENCE OVER THE LAST FEW DAYS!

On Tuesday, I saw a NEW Cardiologist and boy was he proud of me! After glancing over things, he was so impressed that he could see everything right there together!!! It helped him to make the best choice about what to do next!

If you've been like me... I go to my doctors with this long spill... trying to explain everything... blah, blah, blah and they seem to get inpatient and then I would get defensive and there goes the visit and nothing get accomplished and I would come home feeling so discouraged.

Then, I had some kind of neurological episode or something on Wednesday night and had to go to the ER and then to a Neurologist on yesterday. All I can say is WOW what a difference just having that BINDER made. They were able to open it up and get my list of meds and any other information that was relevant.

You guys have no idea how good it made me feel! It feels like I was being a partner with them and I could see it made a big difference in how they related to me.

Our lives have changed so much since that dubious SARCOID diagnoses, and it feel like we have lost all control and are at the mercy of people who either don't know or don't care to know, ya know LOL!

Anyway, this is not just a suggestion, this is a MUST! If you're like me... you probably have lots of stuff. I'd been keeping stuff since 1999.

Take back some control of you life!

I pray you all have a wonderful and safe 4th of July weekend!

By gonenatural
Posted July 3, 2009 at 8:41 am
Report post

When I joined this site a yr ago I was told to get a binder and get all my records. I could not believe the stuff that drs write and you can find that some drs don't even write the truth, k, they lie, and they don't write "complete" info. Such as I had three surgeries/procedures where I know that stuff should have been in my records. Such as my body went into shock and my blood pressure was very low and my body was very cold and I had several nurses and a couple of drs watching over me aft surgery. Not in my report. And with 2 procedures drs where not able to sedate me, period. One was a colonoscopy and one was an endoscopy. When I had the endoscopy done dr was not able to sedate at all and he told me in the future I have to be put to sleep and my pylorus would not open. In the report it states my pylorus did open with difficulty and nothing about sedation. I also had errors on the colonoscopy report.
I have found many others also.
I also have saved myself from being poked so many times with needles since I have lab reports.
I have saved drs a lot of time and most are impressed with my binder, some think it is redicules and ridicule me behind closed doors.
My binders have helped dx'ing me.
Get all your reports from everyone as far back as you can go.
Sorry for the long story, that is me and I am drugged up right now from a new drug for the new dx of nero-sarc.
Hugs
gn

By ellj
Posted July 3, 2009 at 8:57 am
Report post

Also liked the idea someone posted the other day of making a bullet point format of time lines,tests, drugs and symptoms.
I also keep an excel sheet of current meds. (Copies kept in my purse and hubby's wallet). I give the new sheet to the doc when I go in to avoid using time to discuss and update all that.
Also, when you get scans, ask for a copy of the disk for your records. I have never been charged for that.
Have a great day Shae. Good post topic!

By Jrs_Mom
Posted July 3, 2009 at 10:57 am
Report post

I think this is an excellent idea for any person who suffers from a long time illness, disease or chronic pain and receives treatment over their lifetime for this. I just started the binder for my son last night in hopes of getting him to do it on his own over time.
I suffer from chronic back pain, drop foot and have been struggling with getting good medical care for 9 years now and I have a binder that, like Shae44, has helped so much. I even highlighted some specifics that were key and anything that was wrong or incorrectly stated I add a post it note with my version of the truth. I took it to my latest specialist and he was astonished at all of the details and how it was organized and instead of me having to explain everything it was right there in front of him and he could not ignore the fact that it was 3 inches thick, this alone helped him realize what I have already been through. I agree 110%, every person who needs constant medical care and follow ups should have a binder, it may also help when/if the time comes to file for Disability should that become necessary.

By Shae44
Posted July 3, 2009 at 12:44 pm
Report post

Gonenatural,
you are so right, I would notice that same thing. It also helps that my sister is a Medical Lab Tech (MLT) and she explains to me what the results mean and if I should be concerned or not and I like having that trust!

Ellj,
ooh, thanks for that info!! I will most definitely do that!

Jrs Mom,
that is so true! I hope things are getting better with your son! I've been keeping up with your frustration. I pray it will get better soon!

Love you guys!

By Farrow
Posted July 3, 2009 at 3:35 pm
Report post

I mentioned this in one of my posts, can't remember which. But I keep my records in 2 binders now! I tab everything. I have in the front, a few pages with the stuff they always ask for--personal history, family history, surgeries, pregnancies, immunizations, current medications. Then I have information on insurance referrals. I also have the lab reports. The papers that the doctors sign when you leave the office. (It actually says what they saw you for.) I have a tab for research articles, bills, policies from insurance co., hospitals, etc., I keep CDs of my chest x-rays, too. Anything that I think the doctor might want and would speed things up if I could show them right there. I'd like to double file it by dr. also, but I think I'd have to get a 3rd binder! lol I carry it all around in a rolling backpack and take it to every dr. appt, lab appt, etc. I even take it to the referral management office of the insurance company. I've learned the hard way that you just never know what they are going to ask for!

If I actually got ALL of my records from the base, I would have 4 or 5 binders. They are working on the 2nd binder for me now, I think, my folder is so thick! Not to mention the files from all of my civilian docs!

By jbishere45
Posted July 4, 2009 at 9:23 am
Report post

Wow, this is great advice. I came across this site recently & I just love it.I suffered w/many health problems for years from fibromyalgia, glaucoma(several other eye conditions as well), leukopenia, hemeturia, inflammation, sinusitis, bronchitis,etc. Before, I was diagnosed close to 4 yrs ago now. All the different conditions sums up to me sarcoid in one word. Then, a year later I was diagnosed w/bursitis & scholiosis. Then this year I was diagnosed w/arthritis from the sarc. I find that this condition can be & is very challenging but manageable. This week has been very exhausting. I normally try to walk regularly. I think the walking keeps the condition from being worse. I find that even when I have bad days I still am ok. I find that having a positive attitude combats it as well. I feel that being angry or mad just makes it worse. Any way this is great I'll get a binder put all my medical info. in I have them in a file now. This sounds better for doc apt. I need to get copies of all new info. I have for this year. Also, if anyone has to file for disability it does help. I finally was approved after 1 1/2 year battle. It made life financially rough but I prayed & had faith. Things definately has improved in that area. After going from a salary, to nothing, cash assistance by no means this wasn't easy. I have a good family support that has been a blessing through those extreme rough times. To end this post I have an older sister that has sarc too. A former pulmonary doc said that normally one other sibling may have it. In my case it was true. Thanks for the post. This is wonderful to talk w/others that are living w/sarc. Everyone have a great & safe 4th. Take care, JB

By Cakebaker
Posted July 4, 2009 at 8:57 pm
Report post

I agree and have just started to do this. I also keep a journal, even if I just have time to write a little bit but it keeps me from going insane when I'm having a bad day. It also helps to glance through it before a doctor's appointment to let me remember how my days leading up to my appoinment were. Good luck to everyone and happy 4th!!

By NWtransplant
Posted July 4, 2009 at 10:39 pm
Report post

I also keep a simple Excel spreadsheet (4 - 5 columns) tracking my symptoms. When I'm not on the computer, I keep a handwritten list of symptoms and add it when I have time. This enables me to share what's been going on with the doctor. Also helps me to remember what has happened since I last saw that doctor.

Like the rest of you, I keep a notebook for the doctors' records, test results, etc.

Anna

By gonenatural
Posted July 5, 2009 at 7:56 am
Report post

Hi Jbishere45

Question, how did you get dx'd with what form of sarc that causes arthritisis? I am 45 and have had arthristis over 10 yrs to the point that I have needed a double knee replacement for 3 yrs and no dr will do it till I am 55+ and under 180 lbs and had a bone taken out of my hand because of severe arthristis.
Problem is drs in Boston do NOT believe in joint sarc and don't look for bone sarc unless it is big enough to see with the eye. They, many of them, told me this.
I have arthritsis in nearly every joint now and my back has curved in 3 different directions and my neck has curved.
NO one is do anything for this. They keep saying I am too young to have arthritis so I don't need meds. Now it is too late for the meds.
Any ideas?
Thanks
GN

By gonenatural
Posted July 5, 2009 at 8:02 am
Report post

Hi Farrow,

I sure love this idea:

personal history, family history, surgeries, pregnancies, immunizations, current medications. Then I have information on insurance referrals. I also have the lab reports. The papers that the doctors sign when you leave the office. (It actually says what they saw you for.) I have a tab for research articles.

I don't do all of this. And I always wish I have my operations and dates. I never thought of the paperwork you receive from the drs office. I am now going to get a copy of that every time too.

I am on binder 3 now only because I have been sluggish on getting some info because it is 1-2 hrs away but I should get off my cushy and get it. Some I really MUST get. I really have to see what it says. Some I have signed for but never received it so I have to go 45 mins away to sign for it again since they refuse to make copies for me to pick up or copy while I am there. I just wish I could choke the people that make it so difficult to push a button on a computer and it prints my info and choke the hospitals that charge .60 to do it.
Thanks for the extra hints.
GN

By jbishere45
Posted July 5, 2009 at 8:29 am
Report post

Hi GN,

I went to the rheumotologist at Howard University Hospital in DC. This was my 2nd visit & I had a new set of drs. Just to go back w/my 1st visit I was asked to get a gallium lung scan. The drs that I saw on my first visit were interested in finding out if sarc had affected my joints. It would show up on the scan it does a full body scan. The pulmonary drs are only interested in the lung portion. Any way when I went back for my f/up visit I saw different drs. Unfortunately, they weren't interested in the scan results that I had w/me. There was a sr. dr(he was another type of specialist) & a resident dr. He was explaining to the resident how to dx arthritis. He was checking the joints in my fingers showing her how to feel for inflammation. After that he asked me what did I take for the joint pain. I told him I was taking Advil or any generic. He said to stop taking it. He said to take Tylenol for Arthritis. Because I have the form of arthritis from sarcoid. So, I have been taking the Tylenol since. That was about March or April of this year. I hope this helps.

Take care,

JB

By Farrow
Posted July 5, 2009 at 11:44 am
Report post

I actually got the idea from my son's speech therapist in Alaska. They gave me a binder to keep all of his medical, educational, therapy, etc. info in. That plus the fact that my endo wanted detailed info. Oh yeah! I keep a tab for all of the printouts on my med info, you know, the papers that the pharmacy gives you when you pick up your meds that lists all of the side effects. That was the one thing that my endo insisted on me bringing to his office visits so he could point out which ones were supposed to be taken at bed or blah, blah, blah . . .

By elon55
Posted July 5, 2009 at 12:40 pm
Report post

I too have a HUGE binder and also keep an updated excel sheet with all the Dr. appts., dates, symptoms, medications, diagnosis, etc. This information helps the Doctors. I have also learned that also getting ALL results for any tests comes in handy when you are going for disability.

By Shae44
Posted July 5, 2009 at 12:57 pm
Report post

Hi Farrow,

Thanks for mentioning the sheets from the pharmacy! I will start adding them to my binder. I think I will just call them and see if they can make me some copies so I can have everything!

Welcome to Inspire!

Explore topics in this discussion:

14 replies

Add to the discussion

Help and information from FSR

Group leaders

You