I talk about multiple chronic conditions, but what does that mean? MCC means having more than one condition that is ongoing. It can be something like having asthma and GERD. For some of us, it’s more complicated. What might that look like? I have no problem talking about my health, so let’s nix the hypothetical and I’ll use myself as a real life example:
Italics – Body System
Bold – Diagnosis
Plain text – Symptom, category, or note. I have some things that doctors have noted/are treating, but it’s not enough to make an distinctive diagnosis. Example: I have increased intracranial pressure due to my Chiari malformation. It doesn’t qualify for a separate diagnosis of pseudotumor cerebri, but it is an important symptom to note and we are successfully treating it with Topamax.
– Conditions – If one condition or symptom is nested under something else, it means they’re related. For example, my Chiari malformation causes my vertigo.
– Overlap Syndrome: Lupus
– Ulnar Deviation
– Raynaud’s Phenomenon
– Food allergy (shellfish – anaphylactic reaction)
– Drug allergy (Keflex – anaphylactic reaction
Carafate – hives, GI upset, itching, flushing)
– History of anaphylaxis (biphasic reaction)
– Hay fever, mold, animal dander, dust
– Iodine reaction
Chiari Malformation (type 1)
– Increased Intracranial Pressure
– Balance problems
– Low frequency hearing loss
– Difficulty swallowing
– Pressure headaches
– Vision changes
– GERD with esophagitis (I’ve had grade C esophagitis twice)
Cyclic Vomiting Syndrome
Colon polyps (precancerous)
As far as medications go, all of this means I have a higher chance for interactions as medications prescribed for one condition can interact with medications prescribed for another condition. My doctors have been amazing about managing all of this. This is also one reason I’m a big advocate for people with MCC having a dedicated pharmacist as part of their team. I always check in with my pharmacist before I take anything over the counter.
At last count, I have
7 8 9 doctors and 5 6 other health providers. They’re all amazing. I’ve been with some of my doctors for over 10 years. We’ve been through a lot together, and being able to trust them to take care of me is a huge part of living well with multiple health conditions.
But how does this play out in real life? A lot of appointments. Thankfully, most of my doctors are great about managing things through phone calls or emails as much as possible. I can’t even tell you how much I appreciate that. I don’t like going in unless I have to.
That said, there are still times when it seems like my life completely revolves around medical stuff. On paper, it might not seem too bad. But in real life, it can get pretty complicated and overwhelming:
– Managing daily and weekly medications
– Doctor appointments
– Lab work
– Diagnostic and routine tests
– Vestibular therapy appointments
– Phone calls*
– Trips to the pharmacy
– Dealing with my insurance company
– Tracking symptoms
And then there’s the rest of my life:
– Working 20 hours a week as an ESL teacher
– Taking care of my son
– Managing things around the house (my husband is amazingly helpful)
– Cooking healthy meals
– Getting enough sleep (she types as she stays up an hour past her bedtime)
– Holidays, birthday parties, miscellaneous events
*Because I’m immunosuppressed, I have to check in with my rheumatologist every time I get sick, have any signs of an infection, or have a fever over 100.4. That can also lead to other things like going to urgent care for a rapid flu swab or heading to the outpatient radiology place for a chest x-ray. Shout out to my urgent care place: Thank you for having super short wait times and getting this girl in and out super quick!
I try to give myself breaks periodically, but something usually comes up. The last time I tried to give myself just a one week break. One week. It shouldn’t have been hard to have nothing medical to manage for one week, right?
The Friday before my “week off”, routine lab work came back showing low potassium. My primary doc called and needed me to get that re-tested within the week. Meaning I’d have to have it done during my “week off”. So, I got that done and got some medications refilled while I was at it. Then I caught a respiratory infection and had a fever, so I had to call my rheumatologist and go on prophylactic antibiotics. Then I slipped down half a flight of stairs and injured my shoulder, so I had to go see my primary doctor again to get that checked. 2 appointments, 2 phone calls, 2 trips to the pharmacy, and one stick for lab work. All during the week I’d planned to take “off” from medical stuff.
What about the week after that? That was the week leading up to my colonoscopy – so I was dealing with shopping, phone calls, and making sure I was sticking to the instructions for that – and it was also when I had an appointment with my neurologist. The week after that was my colonoscopy, and an appointment with my rheumatologist’s office that was a combination IV infusion and visit with my doctor. And repeat lab work since one of my liver enzymes came back elevated.
After that? Routine brain MRI, full spinal MRI, scheduling appointments with vestibular therapy, my ophthalmologist, my midwives (routine care), and my asthma and allergy doctor.
I hesitated to write all of that out because it’s overwhelming! But that is the reality of living with multiple chronic conditions. It’s exhausting and overwhelming.
That’s why this website exists.
Is going to be all Debbie Downer and woe is me? Heck no. That’s not how I roll. What I am hoping to do is share tips and tricks for how to navigate the medical world when things aren’t so simple.
I’ll also share some things written to doctors from the patient’s perspective. I feel like a lot of stuff written to doctors about complicated patients was either written by other doctors or it was written by people who are anti-doctor. I’m neither. I’m not a doctor, but I am pro-doctor.
I have great patient-doctor relationships with my doctors. They’ve saved my butt a number of times. My gastroenterologist found and removed two precancerous polyps. Do you have any idea how much of a relief it is to hear, “Yeah, that was going to be cancer, but it’s completely gone now”. Huge relief. My rheumatologist correctly diagnosed rheumatoid arthritis and began aggressive treatment when a previous rheumatologist refused to even examine my joints. My RA still caused damage that required surgery two years later, but how much worse would it have been if my rheumatologist hadn’t caught it when he did? My neurologist picked up on signs of increased intracranial pressure and put me on meds that instantly brought my Chiari symptoms down to very manageable levels. Relieving symptoms without a shunt or surgery? YES. PLEASE. The quickest way to tick me off is to speak negatively about my doctors. So there will be no doctor bashing on this website.
Just tips, tricks, advice, and probably some irreverent humor 😉