Take Two

disability and health

It’s always a good plan to start a project, do two things for it, and then disappear for two months – right? Best laid plans… This blog was supposed to be a connection to the outside world and to put my feelings somewhere other than my physical pain or bed-rest guilt. As you can probably surmise, I haven’t been writing like I wanted to, and the following is the reason why.

The past two months have been harder than I was expecting. My health has been up and down and up and then down. The beginning of 2018 saw my health better than it had been since I was a little kid. I still was disabled but I was able to actually participate in life outside of my bedroom. It had been such an amazing time being able to go out more, to actually see friends, to be able to do things with my husband that didn’t involve him bringing me dinner and sitting in bed. I was even able to spend half a day at the zoo and I walked the whole time! My heart swelled with the hope and joy of being able to live a life that had some semblance of normalcy. Well, at least, normalcy for me.

Then in July, two major things happened that set me back to the starting line. First, my medical team started tinkering with my medication and treatments so that I could do some specific testing. Plus, pain and medical issues can be cyclical and I think the medication change coincided with a downswing. I know the testing is so important and needed. I know I am beyond lucky to live in Los Angeles and have the ability to have the amazing medical team that I have. I know having a husband who supports me like I do is rare. It’s self indulgent to feel like I do – but I’m frustrated.

I have spent the past two months in bed – having to decline invitations and cancel on friends and plans. Having to tell my husband that I can’t go out this weekend because my pain level is too high or my blood pressure is so low I can’t walk. Or that I literally have too much blood in my body and I can’t put any pressure on my feet. Having to be in the ER so often that the nurses know who I am.

To add insult to injury, I was denied Disability payments. Receiving that letter put me in a dark and sad place. I’m sure all of that frustration and sadness didn’t help my pain levels. It was such a shock to read that they “recognize I have conditions that impede on daily life. However, we believe you can work part time.” But the biggest reason I was denied was they somehow lost half of my records. Those records just happen to the be the ones that outline a condition that is automatically a ticket to disability. I am able to appeal the decision with all the correct records. I know I will get to the point of Social Security accepting my application.

I know I am going to be okay.
I know I am going to be okay.
I know I am going to be okay.

I keep repeating that I’m going to be okay. I keep hearing that from my doctors. I keep hearing that from my support system. I keep hearing that from my own brain.

And I will be okay. I know that. It’s just been a hard summer. My testing this week will allow me to be able to go back on my old medications and hopefully get my body balanced and semi-functional again. This fall and winter should be a fantastic and fun season. I miss my friends. I miss going out with my husband. I miss having a life.

But I’m going to be okay. And for everyone else who reads this and is having to navigate their lives with this weight on their back, you are going to be okay, too. I am always here to lend a shoulder to those in pain or who need one to cry on. The biggest and most important lesson I have learned over these years of navigating illness and pain is how many people suffer silently and alone. I hope this blog is something that helps people feel that they aren’t alone.

Thank you to all my friends and family who have been that for me.


5 thoughts on “Take Two

  1. Ahhh, dear Anaiah- now I’m in the loop. I’m so sorry for your horrendous summer. Truly no bueno! I will continue to pray for doctor’s wisdom and steady healing. Thanks for sharing your journey and process. Love you! 💓

    Liked by 1 person

  2. Eloquently trenchant thoughts. I admire your strong, loving, cheerful spirit. You are showing me how to get through my own recovery.

    I know you are going to be okay, too.

    Liked by 1 person

  3. Well, your health stuff is just shitty and lousy and just sucks how it affects the quality of your life! Its not your portion. I am glad to know what you are going through however so I can keep you in my thoughts and prayers! Sending you love and healing! xoxo

    Liked by 1 person

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