The past several weeks have been a bit of a downfall. My overall health and condition have been dwindling down the drain. All I can say is I am thankful for my sleep. Granted it may be "too much" though I used to always say, there's never a such thing as "too much sleep." But some days I can sleep 18 hours straight and other days I sleep for just as long with at least 2 naps through the day, lasting several hours each, just to last me until it's time for bed again. Not much time for an actual life when you consider the amount of hours spent asleep. But, my body must need the recharging of energy, so that is what it shall get. Granted, since I have both insomnia and hypersomnia, that I bounce back and forth between, I will count my blessings and say I'm thankful I'm at least sleeping, even if it is considered "too much."
All of my most recent doctor appointments haven't been the most positive, instead, been a tad more confusing than helpful. To give you a visual: imagine me sitting on the exam table and the doctor is staring at me with a confused look, hand on face, with floating, clip-art, question marks all around my body. That's pretty much how I imagine these appointments go.
All of my most recent doctor appointments haven't been the most positive, instead, been a tad more confusing than helpful. To give you a visual: imagine me sitting on the exam table and the doctor is staring at me with a confused look, hand on face, with floating, clip-art, question marks all around my body. That's pretty much how I imagine these appointments go.
This picture was the closest I coul
d find to my visual!I scheduled an appointment with my pediatrician (PCP), which was in turn rescheduled because the receptionist only blocked a 15 minute appointment time. (The receptionist was new and my pediatrician had a nice chuckle at that!) So it was rescheduled and blocked for 1 1/2 hours. We discussed quite a bit in my appointment and it was a step in the right direction, finally! In turn, adding 3 more doctors onto my team. Despite the appointment moving in a forward direction, it did leave the both of us even more puzzled at some of my pre-exisiting conditions and my new mysterious conditions. Since I'm considered a "new patient" for these new specialists, it takes longer to get in to see the doctor, than it does with my specialists that I've been seeing for a while. So I'm hoping that the wait to see these new doctors that I desperately need to see, won't be too long since my pediatrician assured me she will use all her "strings" she can to get me in sooner rather than later. (My PCP joked that since she has me for a patient, she doesn't have many "strings" left to pull).
I also saw a new Pulmonologist at an outside hospital, other than my primary one. I felt that I needed to branch out, get some new opinions, and see what she had to say about me and my case. The appointment was sort of disappointing, but there were select positives. Starting with the brighter side of said appointment, she indeed had some different ideas about some new medications, (that fingers crossed will help), as I was repeatedly told that I didn't have many other medication options for me, other than more extreme measures. She did express that if these new medications were to not help, then unfortunately we will need to discuss some extensive procedures and ideas, that are geared more towards last-resort options. She also expressed great concern that my lung function, which used to fluctuate greatly, has most definitely reached permanent damage stage. Meaning, in the past I would go through periods of low lung function whether the cause was due to flare-ups, sicknesses, etc... but after those periods ended, my lung function would return to baseline. Now, there is no great difference, there will be some fluctuation, depending on why it dropped in the first place, but no returning back to baseline. On a typical day, showing no outward signs of distress, my lungs function at less than 50% than that of the average. So, you can only imagine what it drops down too, when I express outward signs, or when I'm in the hospital or ICU. Again, not the news I was looking for, but wasn't a shock to hear, considering the drastic decline in my body and health.