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Wednesday, March 26, 2014

Disability Case Manager Updates (Nov 2013)

So, I wrote this back in November 2013, but apparently didn't get it posted... and, have been away from the blogging world since then. I'm hoping to be moved to update soon, but I thought I'd at least get this one out there.

One thing that I really dislike is talking to disability case managers. Thankfully, I've been blessed with some really good ones, over the years. But, they're still asking questions that can really upset my anxiety and depression levels. And, knowing that they're just doing their jobs doesn't necessarily make it easier for me.

I talked to my disability case manager today. She was following up on how things have been going and any treatment changes. I had my second round of Botox a week ago, and have an appointment set up with my doctor mid-January. I told her that it's too soon to know whether or not the Botox will provide relief.

All of that is normal and expected... but, she also asks me every time we talk if my doctor and I have discussed what's next:
  • what treatment to try next, if this one doesn't work
     or, in the case of today,
  • what the plan is for returning to work, if the treatment provides any relief. 
I hate both of these!

The first one makes the assumption that the treatment isn't going to provide any relief. What a quick way to deflate your entire being. Even if you don't really expect a treatment to help, there's normally at least a small amount of hope deep down. Then, you have this external voice asking you to think ahead, as though you have everything already figured out, to when it doesn't work.

The second one makes the assumption that the treatment is going to provide relief. While that's not negative in and of itself, it assumes that the treatment will provide enough relief to allow you to actually return to work. Of course I'm hoping for relief! But, even if Botox is successful, that doesn't mean that I'm suddenly going to be able to return to work.

I responded to her in the best, most honest way I could. I told her that it depends what degree of relief Botox were to provide. And, if it does provide relief, my doctor probably wouldn't immediately have me return to work, since I have a history of treatments providing some relief for a few months and then stop working / helping.

Wednesday, November 20, 2013

Beating Myself Up

I'm feeling overwhelmed because I'm falling farther and farther behind with this month's blogging challenge.

My mind isn't working very well. It's been especially bad leading up to and following the second round of Botox injections I had (November 18th). Honestly, I just don't feel very well, and the stress of should's and supposed to's are simply overwhelming me. Not to mention, a wicked cold front is set to come through in a couple days, which normally knocks me down pretty hard. So, I need to step back before I just shut down. I hope I'm not away for long... I'll write when I feel moved to.

I'm asking for patience, grace, and forgiveness... from both my readers and myself.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Monday, November 18, 2013

(In)dependence

As I was writing a post (Evolution: How Being a Patient Has Changed Me) for the National Health Blog Posting Month (NHBPM) the other day, I was reminded of a blog post that I started writing almost 2.5 years ago! So, here's something that I wrote the end of June 2011.

I previously wrote a blog post, Frustration: Loss of Independence & Lack of Compassion, that I'd like to expand upon.

As a person with chronic pain, I'm having to learn to live with limitations that I never had before my accident. The constant, debilitating pain has definitely challenged my autonomy and self-reliance.

Before my car accident, I was pretty independent and autonomous. I loved having my friends and family to back me up and/or help when I needed it, but I also loved being able to take care of myself.

Since my car accident, however, things have been much different. Suddenly, I had to try to learn to depend on others because I was unable to take care of myself. I've never been good at letting others take care of me... which was fine... until I actually had/needed to do it.

I don't like depending on others. But, I think I've gotten better at it... at least better than I was before the accident.

I often cannot make plans to do something. Believe me, I used to be queen of making plans! Making to-do lists used to be enjoyable. Now, it's necessary. If I don't write it down... I'll probably forget it.

I have to see how I'm feeling the day-of an event, which is difficult (physically and emotionally). Then, I have to think several steps ahead about the situation I'll be in... sitting, standing, walking, driving, sounds, lights, crowds, etc... it's overwhelming just thinking about, so it's sometimes easier to just stay home.

Even on short outings, I have to be prepared for a migraine attack, so I have to carry "resources" with me (such as: snack/food, drink, meds, remote for my neurostimulator). It may seem like I'm packing enough stuff for a weekend trip, but I need to have some things on hand... just in case. This is something that many people simply don't understand. I can't just run out the door... I have to be able to gather my things, first.

It sometimes takes me a week from when I need to go to the grocery store, to when I actually go (and that's because my husband goes with me... it'd probably be even longer, if I was on my own). I can drive my car... when I have enough energy and I don't have a migraine. I can go shopping... when I feel up to it. It's so frustrating!

I have become so dependent on my husband. He is supportive on every level... he's such a blessing! He knows how to call my bluff, when I say that I'm alright but I'm really tired/depleted and/or hurting. He helps support me, when I have trouble balancing and walking on my own. It has taken me a long time to get past the "I don't need your help walking," but now I'm mostly just grateful that he's there to be able to assist me. He drives me to doctor appointments, and short shopping trips (mostly for groceries). He takes care of me. ...I'm finally having at least small windows of opportunity that allow me to help a bit more than I used to. :-)

I'm thankful that my mind is still at least fighting to remain independent. I have cognitive difficulties, so it may take me a lot longer to process things... but, I enjoy seeing glimpses of ME, and those glimpses usually come via my thoughts.

UPDATE (November 2013):
Reading through what I wrote 2.5 years ago, allows me to see how much I've changed and grown... what things are the same, and what things are different. Many of the limitations I previously wrote about are still limitations that I deal with on a daily basis. However, I think I've reached a level of acceptance. I'm not exactly sure how to explain it, but I wanted to include a short note / update at the end of this post.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Three Truths & a Lie

Today's topic is: "Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?"

I have a fear of needles.
I struggle with anxiety and panic attacks.
I'm getting my second round of Botox treatment for chronic migraines today.
I'm not at all anxious about today's Botox appointment.

Well, I think it's pretty obvious that the last one is the lie. :-/ I'm sorry I wasn't more creative with this post, but my mind is pretty well occupied... trying to relax and remind myself that I've done it before and I can do it again. Prayers welcome.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Thursday, November 14, 2013

When Everything Is Just Too Much

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Leslie, at Getting Closer to Myself, is hosting the next edition of the PFAM blog carnival. The topic is: "What do you do when you can't keep up? What do you do when you feel like everything is just too much?"

This topic is something that I think everyone deals with at some point in their life. Everything seems to happen all at one time, and it can feel like you're barely able to keep your head above water. 

So, what do you do?

For me, it depends.
It depends what all is happening at the time.
It depends on how long things have been piling up.
It just depends.

Sometimes, I just shut down.
Sometimes, I cry.
Sometimes I write in my journal and/or blog.
Sometimes, I talk it through with a loved one.
Sometimes, I ask for help.
Sometimes, I make a list of how to tackle one thing at a time.
Sometimes, I do a combination of things.

But, I always have hope.
Hope that I'll be okay.
Hope that there's more out there.
Hope that I'll see light again.
Hope that the God of Angel Armies is always by my side.

There are times, though, that I simply don't know how to hold on to hope myself.
Thankfully, I've been blessed with friends and family that are willing to hold onto hope for me, even when I don't know how to myself.
Hope is always there... Thanks be to God!
“‘The Lord is my portion,’ says my soul, ‘therefore I will hope in Him.’ The Lord is good to those who wait for Him, to the soul who seeks Him.” (Lamentations 3:24-25, NKJV)
Here's a post that I previously wrote about Holding Onto Hope... Hold on to hope and Just Keep Swimming...

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Wednesday, November 13, 2013

Evolution: How Being a Patient Has Changed Me

Today's topic is "Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?"

There are so many things that come to mind for this topic. I have changed a lot, since I started living with chronic debilitating pain 5-years ago. I've written quite a lot on the topic of change... here's one that jumps out in my mind:  Change: Life Since the Accident (Jan 6).

Slowing down
I've learned (and am still learning) to slow down. It hasn't been easy, as I was always on the go, before my accident. I planned nearly every hour of my day... man, was I a planner! But, that doesn't work for me now. I have to be mindful of my body's limitations in a way that I never did before. Otherwise, my body may just shut down and/or I later pay a very high price. So, I find my life is a much slower pace than most others, but that's what I need.

Living in the present
I'm learning more and more to simply live in the present moment. It's harder for me to do at some times than others, but I'm much better at doing it than I used to... I still have a way to go, though. When I'm having good moments, I do my best to cherish and enjoy them, regardless of how long they last. When I'm having very painful moments, I do my best to tend to my body and turn my focus on God - thanking Him for what I have, asking for His peace through the storm, praying for others who are experiencing any pain, etc.

Depending on others
I grew up to be an independent woman, and I've always taken pride in that. So, being thrust into a position of truly needing to depend on others was a huge (undesired) lesson in humility, among other things. I still have difficulty with asking for help, but I'm slowly becoming more comfortable with asking for and accepting assistance from others. I think it's an important lesson for everyone - not to depend on others for everything, but to be able to ask for and accept help when needed.
* There's a blog post that I started almost 2.5 years ago regarding independence / dependence... I think I'll work on finishing and posting that in the next few days. 

Gratitude
I find myself filled with gratitude in a different way than I was before. My list of things I'm grateful for includes even the simplest of things that I used to just take for granted. And, as humbling as that can sometimes be, it keeps me focused on the things, big and small, that God has blessed me with.

I have changed
I've become more focused on my priorities, stronger in my faith, more outspoken in health matters (especially concerning justice for those with disabilities), more understanding of others, and more forgiving of myself and others.

Goals have changed
My goals have changed. Sometimes I feel like a failure because I don't have my 5- or 10- (and so on) year plan on the tip of my tongue. My goals aren't SMART (specific, measurable, attainable, relevant, time-bound), like I was trained to believe is necessary. Perhaps it is necessary, but I don't feel a specific drive or calling of something to do in my life right now. And, while that sometimes makes me extremely anxious and like something must be wrong with me, I'm doing my best to trust that God has a plan for me.

Overall, even though I don't have SMART goals, I do feel more focused on a clear life purpose: to faithfully follow God, allowing Him to work in and through me wherever I am and however He desires. Now, that's not to say that I don't struggle along the way. I don't have any clue what I'm supposed to be doing with my life, but I'm doing my best to root myself in the One who does know.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.