Last week I almost DROPPED my Blog altogether due to legal advice given to me. It appears that social media is hindering those of us with Disabilities. Apparently if those of us with Disabilities (as if we asked for them) use the internet and “look capable” than we must be able to ….FILL IN THE BLANK HERE… Needless to say I was NOT a happy person. This Blog has become a Community for me. Not only have I been able to Say What I Need to Say BUT I am opening up a place for others to join me.
THIS IS NOT JUST MY BLOG. THIS IS OUR BLOG.
To be honest, I am not ready to write about last week’s awfully traumatic experience (for me) just yet. I am worn out from wrestling with myself about the entire subject. The best part is:
I WILL CONTINUE TO SAY WHAT I NEED TO SAY AND I WILL NOT HIDE.
I have found that music is incredibly healing and I feel a need to Share another song that has meant a lot to me on my journey with chronic illness over the years. Thank you John Mayer for this song. I heard your words loud and clear and I continue to HEAR them.
Here’s John Mayer’s song, “Say What You Need To Say”. Also as an added bonus it looks like this song/video was made for a movie in 2007 called “The Bucket List” with Morgan Freeman and Jack Nicholson. I hope you enjoy the song as much as I do. It is definitely one of my theme songs.
Nahleen.com: On the Inside Looking Out 
Hi Nahleen,
Well, that’s great news for some of us! I found you in the reader and I’m on SSDI. I have a bit in common with you. I got sick in 2001 in my late 20s. 2002 was the worst yr of my life–I weighed 90 lbs and puked all day from the pain (and had MS and lupus symptoms, but no). I was MISdiagnosed in 2003 and carried that diagnosis until late last year (yes, 9 yrs) when I discovered, via starting to lose my vision, that I really had a genetic connective tissue disease called EDS, Type II. So, I got the double whammy like you when the keratoconus (eye disease) hit within the last 2 yrs, but the silver lining is I finally got diagnosed, thanks to ME (and a geneticist)! Primary disease caused the secondary. I hate doctors with a passion–at least you live somewhere normal with decent medical care (I have a brother in LA). I had my corneal surgery to halt the progression of my eye disease in LA via a treatment trial, but my vision loss is permanent and it was a failure to diagnose by numerous docs. Makes me sick and wish I could sue them for making me visually-impaired! Sorry, I’ve been in a b-a-d mood since something happened to my blog! Don’t mean to rant here… Yikes.
I bookmarked your blog as it’s too hard to follow people w/my vision. I may stop blogging due to the aforementioned issues that occurred, which sucks as I’m basically house-bound (except I live in a motel–haha!). Motel-bound. Posted a draft I had tonight and it may be my last, but my blog bookmarks aren’t too vast (I’m picky!) and may hang around, regardless.
Sorry this all happened to you, too. I’m glad you have a family and stability in your life… Wish I could remotely say the same! I went through some of your posts and saw comments from your family–I have no idea what that is like. Must be very nice. Take care…
A 🙂
HI A,
So so sorry for the delay with responding to this. It sounds like you have gone through so much. Thank you so much for sharing your story. I know how hard it can be to do so. Here’s a Blog/internet hug for you. I hope you feel better and can get the help you need. And thank you so much for your compliments about my Blog. That means so much to me. Feel free to comment/email me any time. I look forward to hearing more from you if you are able to and are comfortable doing so. Sending you lots of healing thoughts, light and positive vibes. You take care of yourself OK?
Ditto! I tend to just delete people who don’t do the 50/50 on here (lol), but no problem if it takes you a while to get back–I’m killing myself trying to use the laptop. Just an A-Type! Really trying to find some normal (well, not health-wise), like-minded people on WP. Not so easy!
You take care!
A 🙂
Thanks for being patient. I find it’s very hard to keep in touch socially so I just do the best I can. Are you able to magnify your screen? Would that help? Not sure if I’m “normal” but it would be nice to keep in touch.
I have Windows 7 blown up and my internet browser is also blown up, which also has a zoomer button. That’s the only way I can be on here! It’s not the best but better than the real world. Well, something about computer screens helps–they’re clearer in general than real life.
Funny about normal–I was always unique but then I got sick and now am what I call abnormal in a bad way! Blogging is good and bad. I am very isolated due to my situation, lack of family that cares or lives near me, friends that flew the coop yrs ago, and whatnot. I love the interaction here as I don’t do FB (who would I talk to?), etc. and I’m a social person by nature, but I’m a scholarly writer–jammed into my head–so my posts take everything out of me, even just keeping up with comments on WP! I’m not writing at the moment–when I get depressed and super overwhelmed, I just have no stories to tell. Hopefully something will change…
Hope to keep in touch… I find commonality w/others with chronic illness, regardless of the type. 🙂
A
Hi A,
I’m so sorry it’s taken me this long to respond. It has been quite a month. My life is VERY full of healing–and it takes a lot of work. Healing doesn’t always feel good that’s for sure. And now that it’s getting sunnier and hotter my lupus and MS are also acting up more. No fun.
I wanted to let you know you’re not alone. I am here even if I can’t respond as fast as I want to. Thank goodness for the internet. I think it really helps those of us with limitations to be connected to the outside world.
I hear you about the isolation. It’s easy to be isolated even if you have a lot of people in your life. That’s my situation. I don’t have the chance to be in contact with the people who reach out to me nearly as much as I want to because I’m trying to get better than ever. So hard because I really am a very social person.
I can also relate so much to the idea that when I write it takes it all out of me. Yet it’s a need deep within me so I gotta keep doing it when I can. I hope you can write more soon. I really like our conversations on here. I’m on FB. You can connect with me. 🙂
I too find commonality with others with chronic illness regardless of what it is. I think it’s so important to connect. You take care of yourself. One day at a time.
thanks for being in touch,
Nahleen
I get it! I don’t do FB, etc., but will keep dropping by every so often–I have you bookmarked. Btw, it can take me a week to write a post due to my health issues and perfectionism! It’s so frustrating!
Sorry the summer sets off your symptoms. 😦 I live for the super hot, dry summers in the desert–wish we could have that all year. They help, until the stupid monsoon comes! Lol.
Take care…
A
Thanks A! Great to hear from you! Yeah, the summer sets off my symptoms quite a bit. So frustrating but it is what it is. And yes I get the issues with perfectionism and health issues. Very much so actually! Take care!
Sorry–meant to say that the laptop is also a double whammy as it’s still hard vision-wise and makes my achy body hurt worse–like 3 levels more on the pain scale. Wish I could just win the lottery and pay someone to deal with my blog (using my brain and words). Then get them to drive me around, deal with mail I can’t see (lol)… Nice dream. 🙂