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This has been a really interesting time. Last Monday, we had to let go of our sweet dog, Jango. He lived a very happy life, but was in a lot of pain at the end. I am glad that we could at least relieve his pain. He was a wonderful spirit, full of joy, and we miss him dearly.
As part of the healing process from this loss, we decided to get a new puppy. He is a delight, and helps to fill the emptiness that we are feeling. His name is Dexter. He is an 8-week old Coton, and he loves to cuddle!
I got my stitches out on Thursday. What a relief! The stitches were very embedded after a month in my head, so it took quite a while to work them out, but it feels so much better now.
My dysautonomia is my biggest problem at this point. My body is still very unstable and unpredictable. My heart rate jumps up, my blood pressure drops, or I become suddenly short of breath or have heart palpitations. I also experience reduced consciousness at times...particularly in the early hours of the afternoon. I am on several medications for this, but they don't always help.
I am exercising daily to try to improve the symptoms of dysautonomia. I have to exercise sitting down, so the recumbent bike is perfect. But I have to be very careful. If I overdo it one day, the next day may be a very sick day with low blood pressure and reduced consciousness. So, I have to be very careful about exercising the same amount every day, and barely ever increasing. At this point, I can do 11 minutes, twice a day. This will probably take months to improve, with a lot of hard work and persistence.
The pain is still being managed with Tylenol. I'm taking 1500 mg of acetaminophen a day, only 3 tablets (when 8 is the daily maximum). This keeps most pain manageable. I've still had a few migraines that require separate migraine medicine.
The muscle spasms are still the biggest cause of pain. I still cannot tolerate any muscle relaxants. So, I'm using heating pads, topical creams (China-gel), and massage to relieve the pain. The pain still feels very similar to migraine pain, but in a slightly different location than a normal migraine. I can usually tell them apart now.
My eyes were injured during my 16 hours under anesthesia. I got large corneal abrasions across each eye. The intense pain only lasted a few days. But I still get burning, dry eyes many times a day. I'm not ready to wear my contact lenses yet. I believe they are healing, but not healed yet.
I also developed large areas of numbness on each thigh from surgical positioning. The numbness was complete at first--no sensation for temperature, sharp/dull, or pressure, besides very deep pressure. Gradually, the feeling returned, but these areas became hyper-sensitive to touch and quite painful. These areas are still healing. The pain is decreasing.
Ready for the good news? My digestion seems to be improved since surgery. I am having less food sensitivities and less digestive disturbance and pain. This is an unexpected improvement!
My swallowing is still improved, but no longer perfect. I still have aerophagia at times with large amounts of water. It is usually mild, currently.
So, given the complexities of this recovery, here is what daily life is like for me right now:
I need to sleep about 11 hours each night. That's about 11:00 pm to 10:00 am. I wake up once each night. As long as I can get back to sleep, I'm fine. If something disturbs my sleep, my dysautonomia symptoms will flare the whole day.
My mornings are a bit better recently. If I take my morning meds right away, including my salt and extra fluids, my blood pressure is usually pretty good, and my heart rate is mildly elevated. I need to spend the first few hours of the day mostly horizontally.
After lunch, I seem to have a flare of autonomic symptoms. My heart starts racing, my blood pressure drops, I become short of breath, and I experience reduced consciousness, or even temporary loss of consciousness. We manage this as well as we can with medication, salt, and elevating my legs above my heart.
On a good day, these symptoms will improve by dinner time. I can sometimes eat dinner at the table, something I could never do before surgery. Sitting up in a chair has always worsened my symptoms. So, I think this is a really good sign for my long-term recovery. I also get my exercise on the recumbent bike at this time of day. I still sometimes get shortness of breath or an elevated heart rate, but I usually stay fully conscious. I can spend some time upright during this window. I still have to rest frequently.
I still get frustrated by my symptoms, especially on bad days, where I feel like I'm not getting better at all, or when I spend a lot of time really out of it. But overall, I am satisfied with my progress so far. I just have to keep reminding myself that recovery takes a very long time, and this is just the beginning. I know there are good times ahead for me. A new puppy helps! I really look forward to being able to move back in with my husband, even though my mom and step-dad are taking such good care of me!
Thanks to everyone for caring and supporting me.
