I got a little nudge reminding me that I renamed my blog and had some promised changes coming. Even though it's nearing the end of March it still feels like the new year and that's probably because so much is going on around me at once I feel like I can't catch up. I still can't promise to get completely up to date in this post but at least I can get a little further in explaining why the changes and where I am now. In future posts there will need to be time devoted to more details as I speed through a lot of information in this one.
When I posted last I was giving my job one last real good All American try. It didn't work and I walked out with the last of my things at the beginning of February after resigning less than two weeks after my return. I still find it hard to believe and do my share of grieving still just trying to figure out where I fit in now. There's been a lot of pain since then and my I can't begin to explain all the different things I've felt.
It's been a roller coaster ride and I've allowed myself to feel emotional pain like I haven't in a long time. I said the blog would be moving in a different direction definitely because the chronic illness had taken a lead role in my life and was leading it on a whole new path in. It's also because I knew that I needed to blog in a more upfront and personal way. A few years back I remember I'd write in a journal but for a while I refused to write in it at all because I didn't feel safe enough to write what I truly wanted to and decided I wouldn't write fluff. Then one day I opened the journal, wrote all the stuff I had wanted to write only to go back a few months later and tear it all out. I don't feel like I can help others understand what it's like to live the way I do and not be completely open. Most of all, I can't help me. This doesn't mean I would say or do things that would jeopardize my future or that I might regret saying, it just means having a little less pride and being a whole lot more honest. One important piece of information that I was leaving out of my blogging was the dysfunction of my childhood family and its affects on me today. I love my parents and would not want to hurt them, just like I don't think they mean to hurt me. Unfortunately, they failed to protect me as a child and still do today. I haven't given up hope that I might soon get somewhere with them but I do not have a relationship with my brother or sister.
I grew up in the "scapegoat" role and had nearly overcome it (I thought) until I became sick and became once again, easy prey. I had many traits that deep down I knew were the result of my upbringing, for instance working tirelessly to prove to my boss that I was a great employee even though she'd never give me the benefit of the doubt. In fact, on my last day at work the HR Manager finally admitted to me that my boss had a policy changed partially because of something she had wrongly believed about me, this after I had confronted them both on several occasions about how I knew this was the case. It will take me a long time to get over hanging on to a job for so long knowing my boss believed something about me that she wouldn't admit or allow me to disprove. It hits too close to home. Someday I hope to let my former boss know what I think of her but for now Eric is making me promise to wait until my SSDI is all set. Yes, she could be evil enough to lie, lying is one thing she does best.
Even more painful is the fact that as a result of my childhood, I have held so many people at arms length because I feared how they might hurt me if I let them in. Believe it or not, this changed only because of a bad thing. If you don't believe I'm really opening myself up, here it comes. I truly allowed myself to openly trust and love my friends when I found out Pam had cancer and was secretly realizing there had to be something wrong with my health too. That was when I realized I had made friends that I truly would do anything for and even though I knew Pam would be okay in the end, the pain I felt at knowing what she would have to go through to get better was heart wrenching. I knew that I could barely get my own work done but would do anything to help Pam that I knew how so I offered to do as much of her work as I could. That's when I started to open up and started really allowing myself to trust these friends more than I've trusted a friend since I was in junior high.
So, if you know me well you know my pride is one thing I hold onto dearly. I don't walk out of the house without makeup on(which at least 1 doctor has told me doesn't help my case) and I find it difficult to admit I might need a little help. I've made friends over the years because they wouldn't give up on me, even when I made it damn near impossible (Susi, that's you). No matter how we came to be friends, those of you who are reading this most likely have some personal connection to me. Thank you for your help, it means more than I can say. I have a lot of work to do on myself, on letting down my guard, my pride and sometimes asking for help but I swear I am getting better. Many of you have reminded me that I have shoulders to cry on and have no doubt, I'll be a shoulder or a call away anytime for any of you too.
Here's to a new era for Amy's blog. And for those of you unsure of what my chronic illness is here's an abridged overview so if you have actually run out of interesting things to do you can google away! I have a problem with my autonomic system, which controls many of the subconscious activities a human body does. I was first diagnosed with Irritable Bowel Syndrome, then Vasomotor Rhinitis, then simultaneously the big ones, POTS- Postural Orthostatic Tachycardia and RSD- Reflexive Sympathetic Dystrophy. Those last two are the ha ha's that tied everything together. A few months later it was discovered I have adrenal insufficiency. I take a bunch of meds and unfortunately one is prednisone. Adrenal Insufficiency is the supposed easiest of my 3 major illnesses to treat but not treating it could result in death. 3 years ago I weighed 127 lbs. When I left my job in Feb I had gained a few lbs from my settled non-dieting weight of around 135lbs to about 143ish. Today, just about 6 weeks later I weigh around 163 lbs! This is setting off a new slew of testing and advocating for a different med, which so far isn't going well. This is part of what having a chronic illness is all about. I'm told I can't stop the med or I'll die. If I don't stop the med how long before I can't walk from the pain on my RSD riddled right hip, leg and foot? This is the reality I am willing to share with you all now (actually, I had to or you'd have thought I was pregnant). Just kidding, I want to share and hopefully someone else out there new to chronic illness will happen upon this site and find some shared experiences comforting. Who knows?
And so, tomorrow begins the next step.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment