About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.
“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?
I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.
If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.
Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.
We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.
Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.
Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.
After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.
At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.
This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.
The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.
I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.
Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.
On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?
Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.
Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.
Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.
Today I made a trip out to a new neurologist with my mom’s friend as the getaway driver. He was recommended to me by my sister’s employee because he was a great help to her family member, who was also suffering from some mysterious neurological issues (but after only 10 minutes he figured it all out). I went in with my usual folder of about 100 pages of documentation. After chatting with him for about 45 minutes and getting a brief neuro evaluation, he determined I should go to the Mayo to be seen by numerous doctors so they could try to get to the bottom of it. Those were the magic words I was waiting for. I already have my hotel picked out down there! I found out after I booked the appointment that this particular neurologist was trained at the Mayo and he still has an “in,” so they can’t turn down his referral. So I stumped another doctor but it was not a pointless visit – I am finally getting my foot in the door.
I am relieved that this particular fight to be seen by some of the world’s leading experts on issues with CSF is finally over, but I’m already looking ahead – and I know that this is the last stop for me. If they can’t figure it out, there’s no where else for me to go. Also, maybe this time someone will write me up in JAMA and put their name on this condition. I’m tired of having to explain why I have placeholders for the disease names.
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?
The Sick and the Dating 