Friday, December 4, 2009

Quiet time

You may notice that I removed a couple of recent posts. I'm not going to say any more about my personal situation for a while. It has to do with the endless disability denial and appeal process. I've seen them twist my words too many times, and I fear providing more fodder for the soulless ones to miscontrue to their benefit.

I have found it helpful to read of others' personal experiences with this disease. I hope to continue providing mine on this blog sometime in the future.

6 comments:

Naomi said...

Dear Joe: so sorry to read that ths is the situation! It is not right that health care and disability is tied to money-making, but this is the sad state of our country.

I have admired your resolve through all this, it will get you through.

Best,

Naomi

Joe said...

Hi Naomi,

You were the first to comment on my blog over a year ago, and to let me know that someone, anyone, was reading. You've always got something positive to say.

Much appreciated on this end.

Yes, I will get through this, and of course so will you. Even if it turns out there's no cure, I've learned to pace myself and to accept things as they are. That's something I only thought I understood before.

It's not what happens to us; it's how we respond that determines our fate.

Regards,
-joe

Renee said...

I find your posts so insightful. Will miss your personal account. Sad that it has to be such a struggle to get disability.
You are in my thoughts.

Naomi said...

Joe:

You said it exactly. It's the finding the grace in every moment that counts!

Hope I will be hearing good news from you soon!

Naomi

Gardens-N-More said...

Thank you for putting this info out there to help others.

I hope your situation improves soon.

I am just starting my Lyme journey after probably having LD for many (maybe decades) years. After numerous dx's and only getting worse, someone else with Lyme steered me to the Lyme community and the rest is history.

What touched me most was your description of symptoms, especially the neuro/psych ones and those having to do with fatigue. As supportive as my family is, they still don't really grasp it all. I feel like I'm losing my mind somedays. I guess in a sense, I am.

Having been a high energy, multi-tasking person before Lyme I find it extremely difficult to cope with who and what I am now.

I also noticed on another post (I hope it was you and my foggy brain isn't getting confused) that you mentioned wanting to be the person you used to be. I wish for that about myself every day. It's been so long, I'm starting to forget who I used to be and ask my family for verification. How very sad...

No, I don't have Alzheimer's. I'm only in my early 50's and started getting really sick in my 40's.

I hope to be able to write a blog someday but I just can't muster the strength right now. I just started treatment and have high hopes for the future.

- Bea

joe said...

Hi Bea,

I'm glad you have a diagnosis. Untreated Lyme is a bad, bad thing. You have a long road ahead, but things should improve eventually.

The hardest part for me initially was that no one understood, even the doctors. And I had a bulls-eye rash, and every other proof of Lyme you could wish for. I despaired as each non-literate doctor wanted to explore another rabbit hole looking for things in their personal specialty that weren't there. I would tell each of them: "I have Lyme disease. I was fine before this."

To which they would invariably reply: "You HAD Lyme disease. It's gone now, so this must be something else. I didn't know you before." With the implicit view that I couldn't just tell them of my own symptoms and they'd believe it. Since they couldn't understand my illness, they projected it back on me, and in their opinion every word out of my mouth was suspect.

So, the thing that got me through that phase was holding fast to what I knew to be true. That I was, as you put it, a high energy, multi-tasking person before Lyme. I just had to address the Lyme and ignore doctors who didn't believe I had it.

There, you got me going :-) Each of us suffers in isolation, taking some comfort that there are others going through the same thing.

If you've just started treatment, expect it to take some time. There will be setbacks where nothing seems to work. Keep at it and you WILL improve!

Cheers,
-joe