An Appointment and More Questions
Today I had a follow-up appointment with a rheumatologist I love. She's the second rheumatologist I've seen in this journey, but the one I wanted to get in to from the get-go. The appointment today was meant to follow up on a med trial and re-evaluate the need for labs and ongoing efforts to find a diagnosis.
I came into the appointment with two hopes: to discuss the possibility that my symptoms could be related to something like myalgic encephalomyelitis (sometimes called chronic fatigue syndrome) and to ask if she'd sign off on paperwork for a handicap parking tag.
It's been five weeks now since this major flare-up began. To be honest, I think this bout has been worse than the first one. I was still working the last time around and managed to juggle everything somehow. I was tired and experiencing all of the symptoms, but they were manageable. This time has been completely incapacitating. At best, I'm capable of 2-3 hours of activity each day, provided I rest well before and afterward. The fatigue is like nothing I can describe, I have constant headaches, dizziness that makes me lose my balance, numbness and tingling, flu-like aches and muscle spasms, wild swings between insomnia and sleeping for extended periods, and muscle fatigue that makes it feel like I've been dipped in a vat of cement and left to dry. Needless to say, discussion about all of that took up most of the visit.
She has ordered another round of labs, which I'll get drawn tomorrow. The labs are so varied that I won't go into detail about all the things she's hoping to test for. She did sign off on the handicap tag, which will make going out in public far more manageable for me. And she is referring me once again to neurology. She feels that many of my symptoms fall more within the field of neurology, and words like "MS," and "myasthenia gravis" entered back into the discussion.
I have to be honest and say in the past week or two, with constant headaches and dizziness, MS had again been on my mind. All along it's been the "big dog" I've feared the most. Hearing it voiced out loud today brought that sense of dread rushing back. Even if it's not MS but a similar disease, it's a terrifying prospect.
All the way home, all I could think was how hopeless it feels (let's be honest, this grey weather doesn't help). The endless appointments and doctors who throw their hands up in the air and chalk me and my symptoms up to a "medical mystery." The prospect of a disease that's not only life-long, but progressive and degenerative. The absolute nightmare possibility of being wheelchair-bound, bed-bound, excluded from life and my family.
Most days I can cope with the unknown. I don't look too far into the future, and I try to take things a day at a time. But on days like today, the future feels bleak. I want so much for my life, for my family. There's so much I still want to do. Today it broke me. I dropped my things at the door, curled up on the couch, and cried.
And then there's walking away from yet another appointment with no further answers, and far more questions. I looked up the MS Society when I got home, just because I wanted to see that people can live with a disease like this and thrive. I thought if any website would offer that kind of encouragement, it would be that one. A video started playing as soon as the page loaded, and a woman described calling their hotline on the day she received her diagnosis. Someone picked up the phone and immediately understood what she was going through. They knew what the symptoms were, knew how she'd be feeling, they understood. I again broke down and sobbed and sobbed and sobbed. To be known, to have someone--after two years!-- pick up a phone and say, "I know exactly what this is and how you're feeling. Here's what you're facing: let's get through it together" would be life-changing.
So, in the interest of transparency and honesty, I wanted to lay it all out again. I had hoped to write with some answers; instead there are even more questions (she did feel ME was a possibility, but that if I have it, it's in conjunction with something else). I will be all right. Tomorrow will be a better day. But for today I'm sitting with the grief and the sadness and the fear. I won't wallow here, but I'm letting them do their work. I haven't felt the need to shed a lot of tears on this journey, but today is a day for crying and resting. And tomorrow we pick up the pieces and move forward.
I came into the appointment with two hopes: to discuss the possibility that my symptoms could be related to something like myalgic encephalomyelitis (sometimes called chronic fatigue syndrome) and to ask if she'd sign off on paperwork for a handicap parking tag.
It's been five weeks now since this major flare-up began. To be honest, I think this bout has been worse than the first one. I was still working the last time around and managed to juggle everything somehow. I was tired and experiencing all of the symptoms, but they were manageable. This time has been completely incapacitating. At best, I'm capable of 2-3 hours of activity each day, provided I rest well before and afterward. The fatigue is like nothing I can describe, I have constant headaches, dizziness that makes me lose my balance, numbness and tingling, flu-like aches and muscle spasms, wild swings between insomnia and sleeping for extended periods, and muscle fatigue that makes it feel like I've been dipped in a vat of cement and left to dry. Needless to say, discussion about all of that took up most of the visit.
She has ordered another round of labs, which I'll get drawn tomorrow. The labs are so varied that I won't go into detail about all the things she's hoping to test for. She did sign off on the handicap tag, which will make going out in public far more manageable for me. And she is referring me once again to neurology. She feels that many of my symptoms fall more within the field of neurology, and words like "MS," and "myasthenia gravis" entered back into the discussion.
I have to be honest and say in the past week or two, with constant headaches and dizziness, MS had again been on my mind. All along it's been the "big dog" I've feared the most. Hearing it voiced out loud today brought that sense of dread rushing back. Even if it's not MS but a similar disease, it's a terrifying prospect.
All the way home, all I could think was how hopeless it feels (let's be honest, this grey weather doesn't help). The endless appointments and doctors who throw their hands up in the air and chalk me and my symptoms up to a "medical mystery." The prospect of a disease that's not only life-long, but progressive and degenerative. The absolute nightmare possibility of being wheelchair-bound, bed-bound, excluded from life and my family.
Most days I can cope with the unknown. I don't look too far into the future, and I try to take things a day at a time. But on days like today, the future feels bleak. I want so much for my life, for my family. There's so much I still want to do. Today it broke me. I dropped my things at the door, curled up on the couch, and cried.
And then there's walking away from yet another appointment with no further answers, and far more questions. I looked up the MS Society when I got home, just because I wanted to see that people can live with a disease like this and thrive. I thought if any website would offer that kind of encouragement, it would be that one. A video started playing as soon as the page loaded, and a woman described calling their hotline on the day she received her diagnosis. Someone picked up the phone and immediately understood what she was going through. They knew what the symptoms were, knew how she'd be feeling, they understood. I again broke down and sobbed and sobbed and sobbed. To be known, to have someone--after two years!-- pick up a phone and say, "I know exactly what this is and how you're feeling. Here's what you're facing: let's get through it together" would be life-changing.
So, in the interest of transparency and honesty, I wanted to lay it all out again. I had hoped to write with some answers; instead there are even more questions (she did feel ME was a possibility, but that if I have it, it's in conjunction with something else). I will be all right. Tomorrow will be a better day. But for today I'm sitting with the grief and the sadness and the fear. I won't wallow here, but I'm letting them do their work. I haven't felt the need to shed a lot of tears on this journey, but today is a day for crying and resting. And tomorrow we pick up the pieces and move forward.
