I have a dirty little secret.
So many people share my secret, but most of them are reluctant to tell anyone.
See, if people knew, bosses might fire them. Employers would be reluctant to hire. Friends might think them lazy, whiny, or self-centered. Well-meaning family members might try to monitor food intake and exercise output. People on Facebook might give UNSOLICITED medical advice.
(Yes, those are shouty caps. Yes, that was worthy of shouty caps! I can't stand when a non-medical professional tries to give me medical advice. Even if they are right, they don't know my medical history or current medications. Please remember that nothing I am writing here is medical advice nor am I trained in medicine. I am just telling my story.)
My secret?
My Secret:
I suffer from underlying, serious medical conditions.
In particular, I have had asthma for a long time. I have many other things going on, but asthma is the one that, until last weekend, interrupted my life the most.
People don't think there is a stigma related to something like asthma, but just watch what happens when someone takes out an inhaler during a Pilates class. Everyone stops to check on you. Everyone. It's horrifying, but the truth is that Pilates class is great medicine for my asthma, and an inhaler stops the attack. No big deal. Certainly not worthy of star treatment from the aerobics instructor. So I stand there - still the fattest person in the class - bright red and trying to make sure my hair isn't sticking up and my belly is still tucked in. People mean well. They care.
I just want to hide.
But I am an adult about it (even if my inner child is throwing a leave-me-the-heck-alone fit).
I simply note the asthma attack in my planner. Go to the doctor? Note in my planner. Get a cold? Note in my planner.
My Story:
Last week, my body upped the ante.
I was getting treatment for some on-going breathing issues at urgent care when the entire left side of my body tingled and went numb, especially my extremities. I freaked out. I was alone, and I couldn't talk, so I crawled to the door. I banged and a nurse came.
They decided I had hyperventilated and sent me home.
I went to my pulmonologist for a second opinion. I was three days into antibiotics and a steroid shot, still exhausted and having asthma attacks, and very forgetful. I would forget what I was doing or saying, right in the middle of doing or saying it. Surely, the pneumonia was getting worse.
I told him about the struggle this week. I told him that a couple of times, sitting on the couch, my leg went to sleep even though I was not sitting on it. I told him my extremities keep getting tingly and sometimes numb - because, I insisted, I was so tired.
Probably not the pneumonia with secondary asthma that I got diagnosed with at urgent care, he declared. Instead, a simple bronchitis, a bit of an infection (white cell count confirmed), and secondary asthma.
Oh, and stroke.
Mini-strokes, or transient ischemic attacks, to be specific.
He rushed me up to my internist and ran some tests to confirm.
Without treatment, recurrent TIA attacks have about a 33% chance of being followed, within one year, by a stroke that can cause permanent damage. (TIA damage is temporary and subsides.)
The treatment, for me at age 40, is pretty simple. Lose weight (okay, that part is NOT simple at all), walk 30 minutes minimum daily, and take a coated baby aspirin. (I also got a not-so-healthy dose of more steroids, some blood pressure pills since steroids whack out my blood pressures, and antibiotics for the infection.)
If you are still reading, thank you. It's truly scary to talk about serious health issues. But for my Loyal Readers, this blog is not really about my health secrets.
How My Planner Saved My Life:
It's about how my planner saved my life.
Since I was struggling with memory, I had been writing everything down. My symptoms, what I ate, doctors' appointments, medical intake.
My doctors were able to use my logs to recreate exactly what happened.
Also, I always bring my planner to the doctor. I always write down everything she says and I always have an updated medication and surgery list in my planner.
When sitting on my regular internist's exam table after being rushed upstairs to her by my lung doctor, she asked about my medications. I couldn't remember where my planner was.
It was, as always, sitting next to me in my purse. But I couldn't say that.
She panicked (in that calm, scary, competent doctor way). She urgently asked about numbness. "Yes, on my left side." She asked about my planner again. She said, "you always know where your planner is. You are having trouble stating it. This is an altered state for you."
Yes. I nodded. She was correct. And I could nod, as the numbness subsided, but still not find the words.
(My children were in the room. She calmly had a nurse distract them. Thank goodness.)
She knew then that I had not hyperventilated. She knew the lung doctor was guessing correctly. I was having a series of little strokes.
The Lesson:
Even if you have a terrific memory (I have a gifted-level IQ, four degrees including a law degree, and memorized Shakespeare for fun as a teenager), having a place to write things down is ESSENTIAL is something bad happens to you medically. You might not be conscious. You might not be able to speak. You never know what condition you will be in.
THE ULTIMATE GUIDE TO USING YOUR PLANNER IN A MEDICAL CRISIS
*Bring your planner with you.
That means everywhere, but especially to the doctor.
If you don't have a planner and your medical situation gets serious or chronic, consider at least a small notebook. You cannot write all of the doctor's instructions down on your cell phone!
*Write it down.
Don't just write during medical crises. Like doctors and nurses do, chart your own health somewhere in your planner.
TIP: Do the same for your children and your dependents.
*Schedule regular check-ups, even when you are healthy.
My internist knew something was wrong because she knows me.
My altered state was much like that of a normal, average-intelligence adult, but that is abnormal for me. It was not severe enough for anybody but my husband and my doctor to even see. (I was vaguely aware of it, but too tired to care.)
*Make an emergency page in the FRONT of your planner.
Note in it where to find your current list of meds, your current diagnoses, and your emergency contact. Note your doctors' names. If you would put it on an emergency bracelet, it goes here. If you wouldn't, consider doing so.
TIP: Just cut out your med list and diagnosis chart from the paper the doctor's office gives you and glue it to your first page of your planner. Add a red medical cross on top. Make it OBVIOUS to emergency personnel digging through your purse for clues!
*Keep an updated meds list.
We think the steroid shot that I got (and needed, desperately) triggered the first TIA. It was a ONE TIME med. It was still on my list, along with the time that I took it.
*Use your monthlies for medical appointments.
Please don't skip annual visits. My internist sees me - the healthy me - about twice a year. Once a year, I go for a check-up. About one more time, I go for a cold or a fractured hand or some other clumsiness.
*Use your weeklies to schedule tests, treatments, and tasks related to controlling your medical treatment.
TIP: If you aren't a paper planner person, please at least put all this information in your phone. Remember, though, without a password, emergency personnel cannot access your phone.
*Keep logs.
Exercise logs, food logs, medical symptom logs - all of these can help your doctors.
I'm going to be fine. I'm doing everything that I am supposed to do.
And I'm not hiding my struggle, not because I think people will see me differently, but because I think healthy people (and sick people) can benefit from the lessons that I learned.
But I still hate being out of breath in exercise classes, just so you know. So if you see me, give me an extra smile of support. I'm working harder than you think.
Thank you so much for the love, prayers, and offers of help that came my way during my medical issues this month. My friends and family have proven that they are even more valuable than my planner!
Etcetera.
Partied with:
DIY Inspired, Funtastic Friday, Morning Joe, Think and Make Thursday, Healthy Living, Wonderful Wednesday, Tell It to Me Tuesday, Together on Tuesdays, Tip Tuesday
I will also urge you to also get a medical alert ID bracelet, particularly one that will link to a call in site that has all of your medical information. If you should pass out or become incapacitated the EMTs and Paramedics that respond in an emergency will not know that you have all of the info in your planner. Yes, your doctor knew you did, and your husband knew you did, but there are times in an emergency where you may be separated from your planner. I have a chronic, eventually fatal cardio-pulmonary disease (Pulmonary Arterial Hypertension). My Road ID medical alert bracelet is worth it's weight in gold to me.
ReplyDeleteHi! I recently found your blog and love all your "planny" advice. But, thank you thank you for this particular posting!
ReplyDeleteNow that I have read it, I couldn't agree more and wonder why the heck I haven't been doing this! I suffer from MS and writing everything down is super critical. And, I haven't done it. I've left it to my husband to remember and my sometimes flight memory.
I always start a new planner around this time of year - blame it on having school aged kids or just, more likely, my inner school nerd. Keeping track of my symptoms/doctor visits/etc will be a priority in there from now on!
Thanks so much again! Wishing you all the best!!!
You have my utmost sympathies. Fellow asthmatic so I totally relate to the staring contest for every time I pull out my emergency inhaler but it sounds like you've been facing even worse stuff.
ReplyDeleteI hope you feel better soon.
This is why you're one of my favourite planner blogs out there. The advice you give is extremely practical. I have no idea why I don't bring my planner with me to the doctor. I'm definitely fixing that for next time. Thank you for this! I wish you the best and I hope your situation improves!
ReplyDeleteThank you for talking about this. As a fellow stroke patient, this is huge and helpful. I would add making sure someone has access to your passwords in case of emergency, especially of you do things like online banking.
ReplyDeleteThanks for the advice! Some of this I do, and some I need to put into practice!
ReplyDeleteThis is another one for Pocket. You should know that a lot of your posts end up there for future reference, and this is definitely one I will be referring to again.
ReplyDeleteI've had a mysterious issue with my digestive system for several years, possibly since birth. I've never been able to get a definitive diagnosis or consistent treatment for various reasons. Financial reasons are at the top of the list, but my own mental shortcomings run a close second.
This post has inspired me to set up a log in my planner for this issue so that I can list and track symptoms. Hopefully, in the future, I may be able to get consistent medical care, but until then, I will have to rely on emergency services for severe attacks and continue making adjustments to (at least attempt to) improve my health every day.
BTW, the introduction to this post really spoke to me. I almost started to elaborate, but then I realized this comment is turning into a blog post itself! lol :)
Before my mom was diagnosed with brain tumor, she had seizures quite frequently. She then started to keep notes of everything. Her colleagues and classmates (she was attending university too) knew where to find all information about her should a doctor be called.
ReplyDeleteIt is a life savior indeed and I am glad it help you too.
Thanks for sharing this very important tip on #TipTuesday!
I'm glad your planner was something you used to write down everything and your doctor noticed your condition. What a scary time. I have to write everything down and take my husband with me, because my meds have ruined my short term memory. I'm sorry you're having TIA's at such a young age, though.
ReplyDeleteThe medical alert bracelet is great, too. I just got mine, and it's great because you can update it online whenever you have any changes in your condition or medication. God bless you :)
Thanks for sharing your post at Together on Tuesdays Blog Hop!!!
So sorry you had to go through this! But we will all learn from your tips here. I, too, keep a list of symptoms if I start feeling them, mainly because I won't remember what day something started or changed unless I do. And it's important to know that when I head to the doctor to figure out what's going on. I also have a running list of big things that have happened -- surgeries, diagnoses, etc. with the date so that should I need a full medical history, I don't have to rely on my memory to be accurate. I keep a list of my medications in the Medical ID section of my iPhone. Emergency personnel can access that without a password -- tap on emergency and an option for Medical ID comes up and all of that information, plus emergency contacts, are available to them. It was one of the best upgrades Apple offered.
ReplyDeleteThanks for sharing your experience and the tips that we will all benefit from. Be well!
Thanks for sharing on the Healthy Living Link Party.
ReplyDeleteMy son has an asthma like condition from being born premature. He has reflux, constipation, and CP. He sees a gazillion specialists as well as OT, PT, and Speech. Having a system to keep track of it all is very important.
ReplyDeleteThanks for the tips.
If you want to fit physically. You should eat balanced food all the time. Sometimes you can take antioxidant supplements besides balanced food. Like you can take the glutathione canada as a well balanced antioxidant supplement.
ReplyDelete