The 4 best things I did with my Lupus treatment this year

[Virginia70]

It has been 12 months of diagnostics and consultants and I am just about there. Yes, a diagnosis as early as Monday of next week if things go to plan.

Thinking back over the past year I thought I'd share with you the 4 best things I did that helped the process (many were recommended to me here!).

1. Prepare for the long haul.

While I have been sick for a few years, it was October 2015 that I started to get serious about finding a diagnosis. Having read the stories of others I knew this would not be straight forward. I have seen 7 different medical teams, given about 20 vials of blood and had a colonoscopy in the past 12 months. I have so many drugs that I rattle and I have daily pain. But it has been good to have been mentally prepared for a long haul, and also knowing that doctors will contradict each other. It is also important to prepare your life around a year of poor health and doctor's appointments. Knowing you are on a long diagnostic process helps you to stay sain.

2. Keep details of your symptoms

I was kind of ignored until I said I had arthralgia in my hands in the mornings. Then they listened. One of the best things I did was keep detailed daily notes of my symptoms over a period of 20 days (see image). I rated each symptom in terms of severity and I also gave each day a traffic light rating of red, amber or green. (Red meant I was bed bound, Green meant I had pain but I could function). Notes are detailed but can be scanned through quickly by a busy doctor. As I also have Bipolar I kept a rating of mood at the same time, so I could differentiate what was causing what.

Doctors LOVE data and this 20 day summary of symptoms has been used over and over again. If I'm asked "have you had mouth ulcers" I can say - "yes 6 times in the month - here is the data".

3. Get a copy of each pathology result

I'm in Australia and I am able to write my name on the pathology request so that I get a patient's copy of the pathology results. Because I have been through a series of doctors who look only at their "bit", having a full copy of the pathology results has dramatically improved the continuity of care I have received. One doctor was going to reorder a whole set of blood work, but I was able to show him that it had already been done. Other doctors have taken copies of the results that are of interest to them.

4. Get Organised

I attend each doctor appointment with a file that includes:

* the 20 day symptom view (including red/amber/green flags),

* a summary of key medical events over past 5 years (e.g. medical procedures, hospital visits, infections I remember),

* a summary of relevant family history,

* a one page summary of all doctors I'm seeing and their contact details,

* a list of medications I'm on, plus

* copies of all pathology.

Most of this is written down as I have a foggy brain and can't remember it all when asked! The good thing is that once it was written down I just handed it over 7 times, rather than having to remember it 7 times! For those days my brain doesn't work, I have the paper work to refer to "ummm ... it is here somewhere!"

I hope this list is helpful to anyone on the path to diagnosis!

[Patricia2015]

Hi there,

I love your organized approach and especially your detailed daily notes of your symptoms over a period of 20 days!

I am organised too when I visit another doctor because too much happened to me the past five years in symptoms but also in diagnoses and treatments.

But keeping daily notes with coloured wellness flags is a brilliant idea as I too suffer from brain fog from time to time. There is only one thing I would do differently and that is only showing wellness flags and not mood flags.

From time to time we meet bad doctors who will tell us our physical problems are caused by our low mood. So if we include mood flags they will concentrate on those.

Xxx

[Virginia70 in reply to Patricia2015]

Yes, I think the mood rating is relevant for me. I was having the opposite problem - because I have bipolar EVERYTHING gets categorised as an emotional response. So in my case it was important to show the difference. It is a good example of thinking how best to communicate what YOU need to communicate. Glad it is useful!!

[Virginia70 in reply to Patricia2015]

By the way, the mood rating might be relevant if someone believes that depression or anxiety are symptoms they want to track.

[misty14]

Hi Virginia

Thanks for posting such helpful tips in getting a diagnosis and dealing with the many doctors appointments.

I hope you get your diagnosis as planned a week on Monday, doctors can still surprise so I hope your prepared!. Let us know how you get on, fingers crossed. X

[Virginia70 in reply to misty14]

yes, i'm always ready for the unexpected ... but the blood work shows there is an immune issue, so one way or another I will get a treatment plan :)! Or, at least I hope i will!!!

[misty14 in reply to Virginia70]

Hi Virginia

Hopefully you'll get an immune illness diagnosis and treatment. Glad your prepared for anything. Let us know how you get on. x

[teacher3]

Hi, loved your post. Please can you tell me where you got your daily note sheet from? I think it would be really useful for me.

Thanks

[Virginia70 in reply to teacher3]

I just used an excel spreadsheet on my laptop. I'm happy to send it to you if you pm me. I took the picture so you could see how i set it out.

[teacher3 in reply to teacher3]

Thank-you my husband has made me a spreadsheet. great advice

[whisperit]

Yes, that is really good. I keep telling myself to do a proper daily record, but never get round to it. Will start today!

Thanks

[Virginia70 in reply to whisperit]

I chose a few weeks and did it solidly enough that it provided a good view of what was going on. The good thing is that once it is done it can be referred to regularly. From then on you only need to keep a note of what's improving, what's notable over the past month or so.

[Happykins]

What a brilliant post Virginia, thanks for telling us.

I thought I was organised but your spreadsheets are a great idea.

Is this easy to do? jilly xx

[Virginia70 in reply to Happykins]

Hi, I use excel spreadsheets often, so it was easy for me. However you could just use a note pad with the same columns and record it by hand. What ever is easiest for you.

[Happykins in reply to Virginia70]

Thanks x

[milkwoman]

OUTSTANDING post!

I have also kept a log of symptoms - started 5 years ago when I was in the process of getting diagnosed. I still keep it today. I've never thought of the color coding - brilliant! I will be adding that to my log chart. 😊

Things also in my log: I keep track of daily meds/supplements. This gets important because over time, sometimes patterns appear that you might otherwise not pick up on. Aside from SLE and Sjogrens, I'm also hypo. Many times, because of the log, I've been able to figure out that a certain supplement or dosage is the cause of symptoms and then I'm able to make intelligent changes (or ask intelligent questions). Also, I'm able to keep track of how many aspirin or stomach meds or sleep aids I've taken which can be a clear telltale sign as to how I was feeling that day.

I also keep track of body temp - I have an AM and PM column.

I used to take all the same forms with me to my doc appointments! I completely agree that it was my level of organization that ultimately led to my diagnoses and treatment. Docs do love organization and charts. I would summarize my symptoms to a one page sheet (citing severity, frequency and/date time occurred). I also have a family history sheet, a current meds sheet (name, dose, when taken). I also carry a "physician history" which is a summary log of all the docs I've seen, when, for what purpose, what tests were done, significant results/findings etc. It is also a tremendous resource.

Like you I would hand all these things over to the doc for their files. They liked that I had copies already made for them and that I was so organized.

I always make a list of topics/ questions before every appt because I would never remember them all. I find it keeps the discussion on track and I don't leave until I've made it through my list.

One last thing - in addition to having all copies of pathology, I also have an excel spreadsheet where I log all blood and urine test results. This was a tremendous resource because it gives a nice "snapshot" view of how my results stack up against each other. Across the top of the spreadsheet is the date of the draw, along with notes of the doc/department who ordered it and the lab where the draw is taken (side note: I now have my bloodwork done at one lab to maintain consistency of results). Along the left side, I list all the tests. In the column under the test date, I then can type in the test result, INCLUDING lab ranges. This guide was the main tool that helped me get diagnosed because one could quickly see "red flags" (I literally would make the text BOLD RED wherever there was an "out of range" result) or upward/downward trends.

I hope my information along with yours helps others! I have learned that you MUST be your own advocate and that once docs get a sense of how organized and thorough you are, the game changes. I am now treated very well by my docs and appts go much smoother and I tend to get what I need out of them and the appointment. It's a good place to be.

[Virginia70]

Thanks! I will add some of your ideas to mine

[Penelope-Mary]

That's fab Virginia, the colour coding is really effective! I'd not thought of adding own name to path forms, wish I had years ago.

👏🏼👏🏼👏🏼 from a fellow Aussie!

PM

🐚

[1985mum]

Hello Virginia

I didn't realise we were allowed to put our own name on path request forms here in Australia. I've been tempted to do it a number of times. Does the lab need you to provide an email address or something like that for them to send it to?

Cheers

[Virginia70 in reply to 1985mum]

Some doctors are supportive - mine certainly is. I hand write my name and address in the "copy to" section and they post it out to me.

[1985mum in reply to Virginia70]

Ok thanks. I'll have to ask gp next time.