Pain and advocacy

Today I woke up (as I have most mornings over the past few months) in a lot of pain. I would say that I've gotten used to it, but the funny thing about pain is...you never really get used to it. I once thought it would be like owning a cat in a tiny apartment. Sooner or later, you stop smelling the litter box.

But it's not like that. In fact, it's almost the opposite. The longer the pain goes on, the more intensely you feel it. The more fatigued you are, the less able you are to cope with the pain. And believe me...I am fatigued.

I feel as though everything is happening at once. I am being called upon to advocate in pretty much every single area of my life. I'll try to break it down for you as best I can.

1. My health...You guys know about my proposed surgery and the ramifications of that procedure. If you missed that one, read about it here. Well, I have my consult with the reconstructive surgeon tomorrow morning and I have to be prepared to voice my concerns and questions, which are many. How did I prepare for this? By talking out my anxieties with my therapist and by arranging to bring a support person with me to the appointment. It's always a good idea to have an extra set of ears when you are getting information like this.

2. Truman's home behavioral therapy program... I just got the news last week that they are reducing his hours by one third. Not cool. Especially considering his recent spikes in behaviors and the transition of moving into a new house. Really not cool. And the reason behind this? Well, apparently I am such a "model parent" that they feel I should be running the sessions by myself and that he doesn't need the number of sessions per week he once did. Basically, I've worked so hard at implementing the program that now they feel I can handle it on my own. The problem with this is, that I really CANNOT handle it on my own. I'm freaking out. I'm exhausted, and angry, and frustrated, and scared that Truman's behavior will endanger and/or injure one or the both of us. So I pretty much feel as though I am being punished for being effective. Sucks.

3. Truman's schooling...The new school year begins on August 29th and we STILL don't know where he is going. Yep - still. I keep calling people and speaking with people (his teacher, his former principal, the district office, etc.) and everyone tells me a different story. The teacher says it's up to the district, the principal says it's up to the Director of Special Education, the Director of Special Education says it's up to the principals, the district office says it's up to the IEP team, the IEP team says it's up to the district office and on and on and on. And Truman is a giant hot potato again. Aaargh!!!

4. Our financial support... I have been on federal disability (SSI) since 2006 due to the ravages of cancer and all the myriad treatments that helped save my life. I have been unable to work in all that time. As I began to feel stronger and healthier after losing weight, I decided to try to go back to work. I started a VERY part-time job doing some light office work for a family business. I began in January, but by mid-May I was really struggling with pain. I was having a big resurgence of the lymphedema that is the main source of the pain I experience. I worked a few hours off and on in June and then that was it. I couldn't do any more. This is upsetting and disappointing on many levels. I was excited at the prospect of re-joining the workforce. It was a relief to have a little more income. I felt productive, creative, social, and needed. And then I felt betrayed by the shortcomings of my body. As much as I want to go back to work, I find myself completely unable. DIS-abled in the truest sense of the world. But a few days ago I got a scary letter indicating my disability is up for review. It's basically like applying all over again. I have to fill out reams of paperwork demonstrating the level of my injury and medical problems. The timing is absolutely brilliant. Here I am getting ready to have a major surgery and they're talking about taking away my benefits. Awesome. Could I be any more freaked out?

5.  Truman's auxiliary support... We receive respite care sponsored by the Regional Center for Truman, but his respite care provider is out of the country for the entire month. Also, with his increase in behaviors, my increase in pain and decrease in function, and the change in our housing situation...well, let's just say our needs have changed. Greatly. I feel completely overwhelmed sometimes...okay, most times. I am actively seeking IHSS (In-Home Supportive Services) as well as Protective Supervision for Truman, which would help us to pay for some additional support in the home. But this, as with any bureaucracy, requires an immense amount of paperwork, phone calls, red tape, and WAITING to get lined up. I am told it is worth the trouble in the amount of relief the family receives, but at this point I am having a hard time seeing the up-side. Right now it just looks like a lot more work on an already over-full duty roster.

So those are the highlights. There are other issues of course. Trying to exercise and get enough protein. The battle of the vitamins. Trying to go through boxes of stuff to prepare for our garage sale. Paying bills and keeping a budget. Dishes. Laundry. Dust bunnies. You know...LIFE.

All of this is what I am dealing with right now. Is it any wonder my meds aren't really helping? They say stress can cause pain and pain can cause stress, so I think I am basically caught up in an endless cycle of pain and stress.

Ouroborus, anyone?

Sorry if any of this bums you out. I end this post thinking of Ecclesiastes, Job, and even a little bit of Revelation. Maybe tomorrow I'll be thinking of Psalms.

I can hope, right?

Grace & Peace...

Hannah