I haven't written too much about the background 'work' that goes into being on top of health care, so I want to just take an opportunity to do that.
This week is actually NOT all that busy. I mean, overall, I will have only had two big appointments, and only a few random things to do.
Just like a job similar to teaching, there is a lot of extra work and attention that goes into simply going and doing the job in the classroom. Same goes with this - there is a ton of work and attention that goes beyond the actual appointments.
Remember while reading this that I am also feeling pretty awful pretty regularly, i am using my cane 99% of the time, I still cannot stand in the shower or walk too quickly or I vomit, I am vomiting about once a day, I am on no medication directly for my arthritis, and I am napping at least a few hours each day due to exhaustion.
I have talked previously about waiting rooms and waiting for results, but I am going to give you as much detail about this week as I can.
So Monday:
I did not have any scheduled appointments, but I did need to make some. So I called the office of my Pelvic Pain Specialist. No answer, so I had to leave a message. Then I called my family doctor - the receptionist was out for lunch and there was no answering machine. Then I have to document my food intake, my bathroom breaks and what kind of issues I may be having in that department, pain scales, etc... I had to switch antibiotics this week, so I have to do a different morning and evening routine and take them differently (for instance, one of my antibiotics that I take, I have to drink a full glass of water and eat immediately after or I can get major ulcers in my esophagus or stomach - which has happened. I also have to sit up for half an hour after taking the medication, and I have to be extra careful in the sun). So a change in routine - not a huge deal. Then I have to do a special teeth cleaning routine (once a week, usually Mondays) with specialized products. I also try and write down what I need to do for the week, medically, and get prepared.
Tuesday:
I had a huge appointment with the Pulmonologist on this day. What does this mean? This means that I have to prepare my mind, I need to come up with some questions, I need to make sure that I have as much information about my health in a concise little package, and then (because it is my first trip to this specialist), I need to make sure all of my medical info is updated to fill out the usual questionnaire. This also means that I should be extra early in order to fill this out.
Okay so first, I make another phone call to the Pelvic Pain Specialist to try and get an appointment. This immediately frustrates me. I had an ultrasound over two weeks ago to try and find the IUD that is still there that shouldn't be there - to then figure out how we are going to get it out.... Since it needs to be out, like, over a year ago! But, because he is so amazing, he has no availability until a month from now. So after speaking with two different receptionists and trying to get them to find room, my appointment is still a month from now, but I am on the wait list for any cancelations. Am I ticked - yep. But there isn't all that much I can do about it short of going in there and making a scene. Plus I have tons going on this month, so, whatever.
Okay so then I get this phone call from my Dermatologist about some test results (which I mentioned in one of my posts yesterday). I spend another half an hour on the phone with her coming up with a plan. She sends me over three requisition forms for bloodwork, two to be done when I am quite unwell, and one to be done when I am in a full angioedemic episode. Then I am waiting for more results and a possible referral.
Then it's off to the Pulmonologist. Get there early, go up to the waiting room, fill out the 6-page questionnaire, wait for about half an hour, then spend an hour and a half with the doctor - going over results, history, symptoms, plan, questions, etc.... It's weird how I feel like I have the same conversation with each specialist. So we book a cardiac ultrasound to fully diagnose the flutter/murmur in my heart for the end of the month, and a follow-up appointment with him in about a month.
Alright.. So that's done! By this point I am so mentally drained that I can hardly function. My emotions are all over the place and mixed and confused and I am just trying to process everything.
So we decide to go for a nice lunch. One of our (my parents and mine) traditions is to go for a really nice meal after an exhausting appointment. Red Lobster was the choice this time. Before dinner gets there I take about ten-fifteen minutes to write down what the doctor said, the impression he has, the new appointments, as well as my blood pressure, heart rate, and oxygen intake levels that were taken in the appointment. Perfect.
Go home and sleep!! Well... After pills and documenting food intake, exercise, pain scales, taking meds, etc...
And did I happen to mention that I also need to make sure I have my cane with me (if I am not using it), my medic-alert bracelet or necklace on at all times, my handicap permit for parking if I need it, as well as my epi pen, extra medications, all pertinent medical information in my purse in case of an emergency, annnnnnnd extra makeup so that when I cry or puke at random points in the day I can still look totally normal.
Wednesday (today):
Got up relatively early - I actually wanted to get a move on today.
I had to gather up three months worth of bank statements for every single account that I have (including credit cards), get it all together and organized, then drive over to Staples and have this all faxed for insurance purposes. They need to be aware of all financial information as well as medical information. I also still need to email my particular case manager for both insurance places and update them on recent appointments and results.
That was my big important medical thing that I had to do today.
I also called my family doctor again and booked an appointment for tomorrow.
After that, I looked in my medication cabinet and figured out exactly which medications I need refills for, what results I would like printed off, and I should really figure out if there are any new symptoms that I should have her check for me. Then the usual medication and documentation routine... Then bed!
Thursday (tomorrow):
I need to make sure that I speak with my family doc about everything that I need to and get all of the results printed off. If I can get everything from her office then that's awesome. If I cannot, then I have to fill out a request for my records straight from Netcare and wait for that package to come in the mail. Once I have those results, I have to photocopy them, add them to my own records, give a copy to my parents, scan them into my computer (and add them to the backup drive), then I need to email all of this information to my case manager and insurance provider, any outside extra health professionals looking into my particular case, add all of the information to my medical book, and then file them away. This is always a very time consuming job... Sometimes I wish I had an industrial sized printer/scanner/photocopier etc...
I also have a CPP application on my desk that needs to be re-applied for once I get a full diagnosis...
Plus tomorrow I have to get those two sets of bloodwork done. This means making sure I have the requisition forms and all of my appropriate ID with me, then going to a Calgary Lab Services, waiting for at least two hours while they download how to properly do these specialized tests (they are pretty difficult and have been botched a couple of times prior to this).
Then I have to do my weekly Methotrexate injection tomorrow night...
Friday:
I need to call my Internist's office to try and book a follow-up appointment to go over the results of the ultrasound I will be having next week ... Now this is extra complicated because the internist that I previously saw who got the whole ball rolling on this attempt at diagnosis is now gone indefinitely. This means that I am not sure who they are going to be sending me to. There are two choices that my initial internist had mentioned, and I am just praying that they can fit me in sometime in August to go over all of these results and make a possible treatment plan!!
I also need to call and order some meds and book an appointment for next Monday or Wednesday to get my Lupron injection done at the pharmacy.
More things will come up, more phone calls need to be made, and I do have to schedule some more appointments, but this week, this is what I have done and what is needing to be done fairly urgently.
I guess what I am trying to point out in this post is that:
1. This is a relatively easy week and not very busy with appointments.
2. Dealing with health problems can be a full-time job in itself. I am extremely lucky that I have been able to be off in order to deal with all of this to the best of my ability.
3. If anyone thinks that all I do is chill and relax all day at home and have fun all the time and go to one appointment every few days is incredibly mistaken.
4. Any person dealing with active chronic illness and/or chronic pain who can ALSO have a full time job and/or have children of their own to take care of is a Superhero. Seriously.
People with chronic illnesses are superheroes.
Just saying.