On feelings

A friend asked that I write more about my feelings and how I'm coping through my ordeal. I pondered this and thought, "but I am writing about my feelings what does he mean?" Then I looked deeper and admitted to myself that, truly, I have been holding back. One reason for this is that, despite all evidence to the contrary (such as this blog :), I don't like to whine about my pain, about my sadness or about my problems in general. Another reason for holding back is that there have been some truly dark days, and I have been afraid to scare the reader. There have been days when I have told myself aloud "I will not be on a 72 hour hold. I can handle this. I have skills and a support system" then proceed to list my phone tree in my head. I do not think it unreasonable for someone who lives in chronic pain and cannot take any pain medication to also have depression and contemplate negative and dark thoughts, even if for a fleeting moment. Rest assured, they are fleeting moments. I love my family too much to give in to such ideas. . Finally, I thought that it might bore the reader with a rehashing of the same feelings. However, if this is to be an autobiographical account of my experience then I must be true and raw as to my experience. So I thank my friend for getting me back on track and to what the original purpose of this blog was meant to be....reader be darned!

With wanting to express my feelings in mind I stopped and asked myself "what would I do with a client in this situation?  First, I'd meet them where they're at; then, ask them to focus on what they're feeling not what they're thinking." Keeping this in mind, I searched for where it is that I'm at and came up with: I'm in a place of mourning. I know, mentally, the old me, the old way of life is gone, but its still too recent, too new and emotionally it still hurts. Although I know that old life is gone, I haven't completely assimilated it, there are still things that remind me of that old life and cause me to cry. For example, Sunday I went to my boys' baseball games and even though I was in the shade, with a cool breeze (I was freezing), and I was drinking Gatorade I got dehydrated and near sun poisoning. It just served to remind me that the person who could walk down the beaches of Puerto Rico under the sun and without a care in the world, is gone...she's DEAD and she will NEVER come back. Things will never be the same, EVER!!!

I haven't yet gotten to adapting and becoming the person I'm going to HAVE TO BE to live this new life. I don't know that person yet. I think that as one part dies another part will have to replace it...if I allow it. And that's harder than it sounds. Some things are hard to let go. Even simple things that most people take for granted. For example, sandals! They are so beautiful, come in so many colors and styles, but when I use them I end up with knee pain, back pain and migraine pain (all about spine alignment that starts at the arch of the foot). Sounds like a no-brainer right?? You'd think so, but having experienced so many losses at the hands of this disease already, I want to rebel against losing sandals too! I also want to rebel against having the boys' lives pass me by while I'm stuck in the house (which is why I'm thinking of completing my transformation into full vampire!) Now I can't attend the games between the hours of 8 am - 8 pm (LOL) so I rebel against seeing the disappointment in their faces, and my ensuing feelings of self-hatred at missing yet another game. It feels like Sophie's Choice! Attend the games and risk sun poisoning, dehydration, migraine for 3 days, neck and back pain because I was sitting in a lawn chair through a double-header; or, stay home and make dinner for them, work on my physical therapy exercises to reduce pain and recover as needed, but feel disappointed and disgusted at myself?

In the meantime, after his manic episode, my son has become depressed although, thankfully, not suicidal. His doctor has added Abilify again as an "antidepressant" since he has historically become manic on antidepressants but has responded positively to Abilify. He's been sleeping 14-15 hours a day, looks almost zombie-like, is irritable and cries easily. He doesn't even want to play basketball outside!!! Oh, let me not forget, he got Shingles too, the poor guy :( So now he's on Seroquel, Trileptal and Abilify...no I don't think they're too much, I think they are just right for his condition and the way his symptoms have developed. These are also the only meds that have worked for him.

On a positive note, I started doing some Pilates at home. Just the mat exercises that I've seen on YouTube and in Pilates Style magazine. I have to say I'm pretty proud at myself! I'm not as deconditioned as I thought I was, probably because of the physical therapy. I find the exercises pretty easy to do, which seems to be the norm for Ehlers-Danlos/hypermobile people and continue to astonish myself at the way my body bends and how I can hold certain positions. Maybe I'm being overambitious but....I'd like to be able to do Barre Ballet at some point :)) The Pilates stretches actually feel GOOD on my joints, as if they had been yelling STRETCH ME!!! STRETCH ME!!! After reading on EDS, they probably were so now I'm taking advantage of them. Plus, I've been on prednisone for a month now and really want to get this bloating off.

On a negative, another surgery is looming in the not-so-far future. This would be my 3rd in 6 months. It be acid-reflux surgery. I hate that it's called that becuase I feel it implies that I'm just FAT and eat fatty greasy foods when in truth I eat fruits and yogurt and cereal. Anyway, twe've tried every medication possible to no avail. If it continues untreated the erosions and ulcers in my esophagus could perforate the wall (WHOA!) needing major surgery or could turn cancerous (Double WHOA!). After that, they will check my vocal cords to see if there has been any permanent damage from the reflux. Worst case scenario? You guessed it, another surgery! So I get to worrying, with all my med allergies, what if something happens in surgery? and what can they give me for pain?
As always, I keep praying and listening. I continue to see God's hand in everything I do whether its through moments that might be called "serendipity", a book that reaches my hand at just the right moment, or a person that stops me and says some kind words...just keep listening.