Just keep Swimming
Dori, Finding Nemo
Still learning how to swim or float rather than fight and drown.
Sometimes things are not so bad, and in fact good.
I am appreciating the little things and the in between.
Everything does feel like a miracle.
This morning Liv went out for a walk first thing, pottied, and we had no major incidents. I can’t remember when I was able to manage that. Pain changes as person.
For whatever reason there is pain. This is part of some of life. It is difficult. I am not going to pretend it is not. (Because I have tried.) Sometimes pain is suffering. And sometimes it doesn’t have to be. If we don’t stoke the fires. We need not be hard on ourselves though if this happens.
Sure other people have their own issues, often times worse than mine. They have no partner. They are missing a limb. They are currently being abused. I know suffering. And it changes a person. Hopefully there is compassion. I know I have more and more in clearer moments of less separation. Every day I meditate on the day and to be present. First thing.
I am grateful for waking up. For moving. For having love in my heart. That is not the issue. And in fact my innate gratitude and desire for peaceful presence is part of what makes me being a monster so difficult. (Another post later about if you think I am being too hard on myself. That is not my point.) Even walking or sitting makes sharp pains, and there are aches behind my eyes that I cannot explain. And more.
The in-between of not knowing has been difficult as efforts are continually thwarted. Yet sometimes the in between is full of even little things that are good. That feel better. That make all the difference.
We are supposed to go to Penn Neuro science to consult with neuro surgery. Almost every time I got to Philly I feel like I am fighting for my life, like if I dont fight I Will be killed. I guess I am not a city gal. I thought it was okay because I used to travel in them a lot. But the cities I lived in were Seattle and Ottawa.
I am still scared, stressed, and tired about the pains and other issues I face. Do I push through or do less? Do I act like I am fine and see if I become okay? How am I supposed to carry on with this happening?
Without knowing the answers we get to move forward even if we do not know how. Try as we might to not, the universe is too great for us to hold it back. This is like a ‘game’ we play with ourselves.
So we made it to what may as well have been the Land of Oz, or the Perelman Center for Advanced Medicine. The doctor, of course, started with, So…What brings you in today?! as if we entered the cosmetics counter at a department store, or had come in just for the fun of it when we could be doing absolutely anything.
I re-iterated that I would like him to view the MRI images and explain what he sees, as I have health problems and no doctor has sat down with me and confidently explained one image, much less both (beyond not having a hemorrhage).
Bearing in mind that I feel that I aim in the fight for my life here, I miraculously managed to keep my reactions in check enough to get a reasoned explanation. He said the abnormality is probably a Rathke Cleft Cyst. That 'these do not cause symptoms' because x y z. And that I could come back in a couple of years or after I lose my eye sight. After I stated that it seemed odd to wait until I lost vision to check on it, he seemed annoyed and we agreed on vision changes. Scary. Box checked. I will follow up in November ish I guess. So this craziness in the pituitary is ongoing. And he offered to answer questions and wanted us to feel heard. It is just that he didn’t know anything about anything else.
Blood is normal. Of course if it is just on the edge of normal or consistently normal low or normal high that absolutely does not matter — as normal is normal according to every doctor I have seen. (I am not special.) Normal is normal. No matter my diabetes numbers are fractions of points away from pre diabetes every time I test, despite fasting and even working on nutrition. I need no test, as the endocrinologist explained that I cant have it because I am not over weight! (Phew. Not.) Besides, it does not cause pain. She grudgingly ordered the tests.
So there were no answers where I thought I would surely find them. That was a mistake. I mean I hoped and assumed that it is causing these crazy symptoms. Yet I figured they would say it was not doing anything and I would be left still standing. And here I am. I guess. I should. Feel. Relief. But physically, and in every way except the realist that cant be named, I am not well.
This is effecting every aspect of my life. I am pretty isolated and unable to make many plans or show up, and people still don’t quite seem to get it. But Gary, Liv, and Sammy get it. As much as they can.
Physical therapy is happening. I dont even know what we are working on. I chose neck pain after being forced to state one area there was pain to get a referral. They are actually the kindest people and truly care. It is not the norm at all.
They are the opposite of almost all other doctors. Expressing dysregylation just makes them more attentive. They don’t prescribe antidepressants if you shed a tear. They don’t make you push. They want you to heal.
My teeth also hurt. Maybe I have 'just' been having migraines.
I also did an intake for behavioral health, but it was only for medication, not therapy. So I will have the evaluation and see what they say. I consulted with a private pay therapist who can see me soon for $130 an hour. They all want to tell me about Open Path. Well let me show you my sent message and call logs about how therapists are just people and not all of them reply, and even if they are on open path they don’t always honor the sliding scale range.
I want to quite physic therapy, but it is -probably the least stressful thing. Yesterday I woke up with a migraine, threw up, and managed to get in anyway. It was not pretty. I was not the kindest. I can’t even remember some of what we covered and left with out my paper, so I am not sure if I accidentally left before we were done. But I will try to go back at least two more times for the appointments I have scheduled.
Still to do is to get checked by an ENT, June 2, pending insurance BS, dermatologist, but no energy to schedule yet, and some images of neck, which I guess I can walk in for an x ray and cant get the MRI until July, I guess.
In the meantime I am treating myself like I am…just a suffering human. But not only that. Like I am the walking wounded. I can’t retreat. Or I don’t want to. Or maybe I already did.
This morning I want to take Liv to the Royersford Farm'er’s Market to get some pets and treats. Gary and I will take both Liv and Sammy somewhere nice. I will get some work done. I have barely worked all week because of migraines.
One thing that has helped, which I will hopefully say more about, is meditation and somatic practices.
If you are struggling with anything, know you have emotions to process, or are just curious, this has been there for me when no one else could and I was at a loss: Somatic Practices from Hello Inner Light.
There is too much to say, so I just have to cut myself off for now in hopes that I can listen to someone else for a while.
