You Get the Seal!

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.

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Dating Whitecoats

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.

It’s Raining Johns

This weekend I received two random friend requests on Facebook, both men claiming to be named John. One had no friends listed, his background pic was of an army unit crouching on the ground and his individual photo was of a guy who was about 26 with full sleeve tattoos. There is nothing listed like his hometown or location, only that he is divorced. The second was of a guy who looked middle aged and had about 8 “friends,” all women, and his cover showed him getting into the European driver’s side of a luxury car. Before I accepted their friend requests I did a reverse lookup of their photos to see if they were borrowed. No hits, so I accepted, which is pretty out of character for me. Wouldn’t you know it – they both hit me up within 20 minutes of each other to introduce themselves 24 hours after I accepted their requests.

John #1 (Army): where are you from..
Me: I’m from Minnesota. My page contains a ton of info, but yours has none.
J1: who told you that my is none
wow nice to meet you, I am from Austin,Texas and I am currently stationed now in Afghanistan for peace keeping we need you prayers..
Me (cringing at the prayers reference): I have a friend in Austin. Are you Army, or Marines?
J1: Are you married and you have any kids? and what are you doing for a living……and how old are you
Me: I am not married and don’t have kids, it wasn’t my destiny this life. I’m 41.
J1: i am single divorce my ex cheated on me and i have 1 grown kid and one adopted son…….i am 42 now
Oh I see, would you like to get remarried again…?
Me: I’ve never been married.
J1: i have been in afghanistan fro 14years now
oh Okay, would you like to be in love again..?i am looking fro the right women to get in love with again ….how about you …how about you
Me: Well, the love question is a tough one. I am not sure how this brain disease is going to play out, and because it’s so rare, the doctors don’t know either.
J1: why don’t you want to be remarried again or be in love with someone again
Me: Quite frankly, I don’t know if I will ever be well enough to date again.
J1: that will never be true
Me: You are optimistic? I have had 10 surgeries in 4 years, the doctors have decided to stop operating on me for now.
J1: why dont he operating on you

Okay, at this point I’m thinking there’s a little Google Translate going on!

Me: Because all of the operations have failed to fix the problem. So are you using your Facebook page strictly to find romance?
J1: no i don’t use it
(Except for now??)
J1: i am looking fro the right women to get in love with again ….how about you …
Me: I’m not into women.
J1: why not?
Me:  I’m just not. I see tatts on your profile pic. Where have you been getting them done?
J1: there is no tatts on my profil pic

(I can see that the guy in the picture has tattoos from his shoulders all the way down to his wrists, full sleeves)
Me: I am on a laptop and can see pictures on a larger scale, it looks like you have full sleeve tatts. Is that not correct?
J1: there is not some thing like what you are saying to me
Me: I can see the top of the bicep in the picture.
J1: dont make me to be came angree with you
Me: So you don’t have tattoos?
J1: yes i have but first i did not know what you were saying..What are you looking to meet on here..?
Me: I’m not looking to meet anyone on Facebook. I’m also not doing internet dating.
J1: why
Me: I’m not well enough to date right now.
J1: why dont you want to be in love with me or any one
Me: I have to concentrate on my health right now.
J1: i no thta you have to concentrate no your health now but you can be in love wells concentrate no your health
Do you have Yahoo Messenger Id were we can get to know more about each other..?
Me: I’m sorry, I don’t use Yahoo messenger. I can’t put any energy into dating right now.
J1: Oh Okay, can you go to http://messenger.yahoo.com/ and download it now..?
I was hoping that it was lights out soon for him, since it was about midnight his time when he messaged me…if in fact he was where he said he was.
Then John #2 hit me up:
J2: Hello C____ . you have a good and nice name , i really like you so much to be your and i will like to be friend, Have interest i knowing more about you, am a nice good and honest person 49 years of age . hope to hear from you soon .
Me; Hello John, where are you from?
J2: Am from Brazil but i live in Californian
Me: I noticed you were getting in on the European side of the car in your cover photo.
J2: I took the photo when i was in England , do you like the photo
Me: It’s a great action photo.
J2: Lol … you look pretty

How old are you if i may ask ?
Me: Thanks. I’m not on Facebook to date or make hookups though, just be warned.
J2: Why do you say that ?
Me: Well, I usually don’t accept friend requests from people I don’t know because I post somewhat personal stuff.
J2: But why do you accept me , don’t you like me ?
Me: I am always open to making new friends, but there are some things I post on Facebook that people who don’t know me wouldn’t understand.
J2: I understand that so very well, i don’t get into people stuffs i just like the person you are and i am looking for friendship that’s the reason why i send the request
(Yeah, right!)
J2: Am 49 years of age  How do you see me ? But right now am in Africa for work
(Ah ha – there it is!!)
Me: What are you working on there?
J2: I work as an Contractor and right now u got a work of roads so am making it and directing am also the Supervisor.
what do you do for a living ?
Me: I am not well enough to work now. I’m not sure if I will be able to work again. I have had 10 brain surgeries.
J2: Ohh so sorry to hear that what has gone wrong with your brain ?
Me: It is a rare disease – so rare that I might be the only one with it – and none of the doctors know what it is or what to call it. They have tried 10 operations and have decided for now to stop operating.
J2: How did it go on with you ? Qhat are the observation, i think you are on good track right now and i don’t think there is something wrong with you but i may not understand please explain
Me: You mean, how did I become sick?
When I am upright, the fluid in my brain presses on the nerves that lead to my face and also puts pressure on my brain stem. My face becomes paralyzed and I can’t see, and it also makes me very dizzy and unable to walk.
J2: and how do you get along ? does that have any problem with the way you talk or send message ?
Me: I can’t drive or walk great distances. When I lay down, the fluid moves away from the nerves that it presses on, so I can see nearly perfectly again. So in order to do anything, I have to be laying down flat.
J2: i can send you some african herbs and will heal you but it’s cost
Me: lol – no thank you, no herbs necessary.
J2: You don’t believe in herbs ?
Me: That would be like throwing parsley down your clogged drain.
After that, crickets.
This just reminds me of a Family Guy episode that a friend sent me a long time ago – it has to do with a guy insisting that a few minutes with his penis would cure a woman of all of her problems. I am convinced that is the universal belief around the world.

Not Sick Enough?

September often signals everyone buckling down to business again in Minnesota because summer vacations have wrapped up and everyone is back to school. My mailbox has been stuffed every day with paperwork too – mostly having to do with filing for medical assistance and getting all of my records sent to me by various facilities. I’m not even trying to get housing or food assistance. I braced myself for a challenging week.

It started out nice enough. My uncle helped me to connect with a stylist who has a lot of experience cutting wigs (both synthetic and human hair), so I finally got some really pretty pieces to go incognito when I feel up to it. Monday night to Tuesday afternoon a friend visited from another state, so you know I had to scrub my toilet for that. Today I was supposed to be wheeled around the state fair, but that outing was canceled due to rain. It’s probably good that I stayed home anyway.

My first call of the morning was from the Maryland office for Social Security benefits, notifying me that my request for disability was rejected. I know, I know, 80% of cases are rejected the first time, and I’ve been telling friends the same thing when they have asked about filing. I still wasn’t prepared to hear it about my case. I used to never cry, but now that I get anxiety because my brain is being crushed, I cry over everything – the Sarah McLachlan ASPCA commercials, the dogs greeting their vets coming home from war, the fact that I have to get another new mattress after only 4 months because I’ve worn this one out already…well, you get the idea. The lady who called me was not unsympathetic and probably gets upset people on the phone all of the time, but I’m guessing it’s not how she wanted to start her day either. She told me to file the request for reconsideration within 60 days of the date of the letter being sent to me and that the next person might view my 300+ pages of documentation differently. I was so choked up that I could hardly speak. You know when you hang up and you think of all of the things you could have articulated or asked? Yeah, that.

After I pulled myself together again, I called legal aid for my county and the attorney I spoke to confirmed that I should file the request for reconsideration. After that if I had to request a hearing, I would have to secure my own attorney – and no one wants these cases because the attorney doesn’t get paid if I don’t win my case. It’s discouraging to hear things like this because I’m having a hard enough time trying to be my own advocate with the health care professionals who are supposed to be helping me to find out what it is that’s going on. I envy the people who live in countries that don’t demonize their citizens for becoming sick and needing assistance.

I’ll see my new neurosurgeon tomorrow to talk about the possibility of another surgery now that I have jumped through all of his hoops, and I’ll meet a new neurologist on the 15th of September. Who needs a job when you have to coordinate everything for your very own Carousel of Crap?