Happy Anniversary

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
2016-04-12 21.37.08

6 thoughts on “Happy Anniversary

  1. May I ask, why did you move to St. Paul? just curious.
    I’m proud of you for going to the conference. and the drs who were so fast to dismiss you should be dismissed. Mayo has not helped anyone I know who has been there. It really isn’t all that great. IMHO
    Saint Paul really is a Saint. He and Saint Stuart need awards.

    I finally got SSDI 2 years after my initial filing. One of the biggest reasons they had trouble with me is because I was under 50 when I filed. I turned 50 before my hearing so it was easier for me to get approved. There was someone in the hearing from some place that said if I could work or not. They said no. when the judged asked if I could work now, I said not without a lot of training to know how to work with my disability and I wasn’t sure I could understand enough to learn it due to my cognitive function impairment. I did flub up a couple of times during the hearing that showed my cognition was a bit skewed.
    I think one of your biggest problems is no diagnosis, no doctor really going to bat for you. I had a doctor who said I couldn’t work. I made a big deal during the hearing that no matter what I tried to do I would not be reliable. If I have a vertigo attack, I will not be able to work and I never know when that will happen. Employers are not understanding about that. Plus I’d have to work from home. I stressed that I wanted to work but it just wasn’t possible. I think the fact that I told them that made a difference. It didn’t look like I was trying to scam them. At least that’s what my lawyer said.
    After my hearing I had my money within 2 months.

    I’m lucky, I have Stuart’s income to supplement. My disability money goes straight to my health care. I really wanted SSDI so I would have insurance. What if something happened to Stuart? I needed something put in place.

    So that is my story.
    It probably doesn’t help you at all.
    They may offer you a video trial, it will come up earlier. My lawyer said to not take this. They need to see how you. They need to feel what you are feeling. See how sick you are.

    good luck my friend.
    I hope by some miracle you can get in there before next year. But I doubt it.

    my best to Saint Paul.
    and you are right, it is the little things.


    • That’s a good point about video vs. in person – I had wondered that myself, though I didn’t actually voice that concern to my attorney. I do want them to see me in person and to see my tremors in my limbs and neck, and to see how hard it is for me to see when my eyes are nearly closed. My PCP said she was surprised that I wasn’t awarded disability, but she keeps saying that all of this isn’t her specialty, so she can’t say with utter certainty just how much I’m suffering. It’s INSANE. My PCP back in Phoenix kept pushing me to file, so he may put in a good word, but I need some current players for sure. I ended up in St. Paul because I grew up in MN and I lived in this state 20 years ago but took off to see the U.S. and live elsewhere, but when I became too sick to care for myself and my house, my family talked me into moving closer so they could help me. We also thought I would have access to better healthcare, but really, I cannot believe the amount of stonewalling I’ve encountered here – so much more than what I experienced in Phoenix.

      Liked by 1 person

      • I’m sorry about the health care. It really does seem to be majorly different in different places. I get good health care, but my husband works for a good hospital system. Before we moved I was seen at Duke, thats where the Dr is from that said I’m disabled. It may have made a difference. We lived not 15mins from Duke before moving, so most of my Dr’s were there. I still drive 3 hrs to go to the audiologist there. But I’ve finally found a good group of drs here….in Charlotte NC. It took me a while to find a good dr in my specialty field, so many are so narcissistic. I lucked out getting a great PCP. The Dr’s here already know I know what I’m talking about. I will normally go in and tell them what I need, and they do it. It’s kind of amusing.
        Sending you the very best. wendy

        Liked by 1 person

      • I used to have doctors who I could tell what I needed and they would do it. I think they liked it because it saved time for them, and I was always right about what was happening. Here…well, their egos get in the way of everything – of whether or not I get a second visit, or if I get any effective care. I still can’t figure out if it’s because they are trying to prove they can compete with the big dogs (the Mayo), but that’s what I’m leaning towards for now.

        Liked by 1 person

      • Are you considering going to Mayo? If so, I sure hope they can help. I went to John Hopkins for a consult on my vestibular problems. It was eye opening. They are willing to do more destructive things than other drs I’ve met. Even though I’m disabled with this, drs won’t do anything that could harm my ears. The JH dr said, they think you will get worse than this? I may go back for the treatment, but I’ve been doing better, so I’m waiting. It’s just nice to know I have options.
        As the dr there said, “there’s always hope”


      • No Mayo for me – they turned me down five times, the last time saying I’m “too rare to diagnose or treat” (in writing). I already tried the JH route but medical assistance denied my appeal to go out of state. I’m glad to hear that at least you are receiving the best possible care to maintain some standard of quality of life so there isn’t irreversible damage.


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