Chronic Illness · Coping · Life Posts


Well the MRI came back clear. And I really don’t know how I feel about it. I really wanted answers…but I didn’t want another diagnosis. I wanted to finally see what was causing my life to be an uphill battle but the truth was, there was no cause but life itself. We didn’t get the EEG results back so we have to ask about them Monday when I go for my cardiologist appointment. I don’t want anything to be wrong with my body, I want to be as healthy as possible. But being cut off so abruptly by those four little words, left gripping a trailing list of unanswered questions … that just feels unfair.

This hopefully will be my last appointment with my pediatric cardiologist as we are trying to schedule a PCP appointment to get a referral for my adult one. At this appointment I need to discuss how the medication that I have been on for 6 months has been doing a whole load of nothing since I’ve started it. Maybe this time when I have my mom who is comparable to a pushy lawyer in these situations and definitely my savior, my doctor will actually listen when I tell him the meds don’t work. I also need to discuss how my symptoms have increased in intensity and frequency. They have done this gradually over time since the last few times I saw him and are now at the point where it’s becoming unmanageable. More tachycardia episodes and faster heartrates when they occur, more near-syncope episodes and actual fainting, more, near constant dizziness and falling, and that disgusting feeling of nausea, fogginess, and overall ugh feeling when my blood pressure gets too low which is almost all the time now. I really hope we can make some progress before we leave and can transfer to my adult cardiologist feeling confident that we have a stable plan. I’ll update you guys when I get the EEG results and after my cardiologist and pain clinic appointments!

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