I found this article, 10 Things I've Learned From Living With Chronic Illness. I liked no. 8 quite a bit:
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
But I liked the entire article. Some of it made me shout out "Amen!" and some made me wish I were a bit more Carpe Diem in my life. If only I were not so darned exhausted!
This one line stood out: The mind is a powerful tool, and I must use it to my advantage. For me, this reminded me of the work I am trying to do on shame and the patterns impressed upon me in living with sexual abuse. My friend Emily found this post for me, The vagus nerve, emotions and the difficulty with mindfulness practices, on a blog entitled Healing from the Freeze: Trauma, Dissociation and Embodiment. I found the article both reassuring because I understood what the author was discussing and interesting in reading about the vagus nerve from a non-dysautonomia perspective. I also found it ... a bit supportive in explaining why mindfulness is often difficult for me. It is not because I am not trying hard enough!
"When you have a persistent sense of heartbreak and gutwrench, the physical sensations become intolerable and we will do anything to make those feelings disappear. And that is really the origin of what happens in human pathology. People take drugs to make it disappear, and they cut themselves to make it disappear, and they starve themselves to make it disappear, and they have sex with anyone who comes along to make it disappear and once you have these horrible sensations in your body, you’ll do anything to make it go away.”
“If these sensations last long enough, your whole brain starts fighting against emotions. And what happens in the long range is that traumatized people who continuously have a state of heartbreak and gut wrenching feelings learn to shut off the sensations in their bodies. And they go through life not feeling their physical presence.”
She then adds:
He then touches on a very important point and one that strongly resonates with me – “it’s a beginning of understanding why traumatized people have such a hard time with mindfulness and why mindfulness in principle doesn’t work for traumatized people because they cannot feel.” Van der Kolk had sent many of his highly traumatized patients to do mindfulness exercises with Jon Kabat-Zinn and found that many of them were returning in a state of upset and agitation.
Yes! I totally get that state!!
I have very much been working on staying present when I am having a flashback and to try and focus on my environment when I am upset. I do not do well with mindfulness during the former, but I have made strides in the later. I have also, instead of mindfulness, tried to reach out for help, to not be alone with the overwhelming emotions so that I wouldn't flee. My friend Mary has helped me through the storm several times.
Such mercy.
Tomorrow is the visit with the immunologist. SIGH. I find it odd that hearing the new GP tell me I could put off the appointment for a while (six months or so) if it is too stressful for me. Just having the freedom of not going has helped me to work toward going. That includes trying to think about getting through the exam and the shame that always follows.
I am a bit confused because the paper work sent to me said the appointment would be two hours. However, on my online chart, the appointment is marked for only 30 minutes. I find it hard to believe a new patient appointment could be accomplished in 30 minutes, but I have little expectations for the visit, so either way will be okay ... I think.
The paperwork I am to fill out and bring with me is history and onset of symptoms type questions. For one, I stink at filling out paperwork these days. I find it arduous in that I get confused and I struggle for answers that I should know ... and know well. For another, I have a tendency to overthink answers, knowing that I miss details, leave off words, and accidentally skip questions.
Four years ago, when I was trying to find a neurologist here, I created a medical history summary, so I spent a few hours editing it and condensing it into more concise information. I also updated my list of doctors and my comprehensive list of medication and prescribed supplements. The medical history is a bit distressing to me. This summary of the wretchedness of my life. On paper, five pages of paper, it looks almost manageable. However, in real life, it often is not. Manageable that is.
I find it odd that I will be in an Allergy, Asthma, and Immunology practice on the morrow and I spent all last night and most of today coughing. It is like my lungs knew they were going to be near an asthma doctor for the first time in years.
I hAD been trying to not blow the plugs of bloody green mucus out of my head so that there would be stuff to look at during the exam, but I finally couldn't stand it any longer. I have had less GUNK in my head since the antibiotics, but I am still producing fresh stuff and my sinuses are still bleeding. It is painful, when the clogs rip down my sinuses, but it feels every so much better when they are clearer. It is difficult for me, this "new normal." Even though I am absolutely not ready to see a new doctor and to have a new exam, I do wonder if there is anything she can do. I still do not get what IgA is and why it matters if that blood work is low.
Part of the reason for the medical history is that I have paid several times to have my records from Alexandria transferred from doctor to doctor to doctor. It is very expensive ($275 the last time). I have taken the position that I am not doing it any more. So far, the doctors I now see do not have a problem with that. I have kept copies of all my lab work and testing since I moved here and offer that up when I see a new doctor.
I have the CD from Social Security Administration and can print out the records from what the investigator collected and the testing its doctors did, but no one has been interested in them. I don't mind. The neuropsych stuff was so defeating, having declined significantly in the 18 months since the previous testing. If I had oodles of money, I would like to have that testing again, to see where I am. However, I have a keen sense of what I have lost and know rather intimately just how much I cover my cognitive weaknesses.
Like this weekend. I have spent the entire time, nearly, when I wasn't resting, working on preparing and rehearsing for this new doctor appointment. Those appointments do not go well when a doctor asks, for example, about your surgeries and you have this ginormous blank spot in your mind.
Having printed, edited, printed, edited, and printed for a third time the history, I am fairly confident is has all the information that would not fit on the lines of the paperwork I had to fill out for this appointment and a general, yet comprehensive overview of my history. I know my med list is good, because the other doctors have liked it. And they all seemed to like having a listing of all of my doctors even though that information is in my online chart in the Parkview system. So, I am prepared as well as can be paperwork wise.
I think, perhaps, too, I am a bit more prepared for the exam ... or rather for my lack of ability to cope in the present with exams. I better understand what shame is and what happens to my mind and my body when I am in shame. So, I think the "afterwards" will be better, will not be filled with ongoing shame. That is my hope ... my goal, if you will.
Time shall tell if I am ready.
I think I am.
I sure hope so.
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