The last couple of weeks of December were a revelation.
I spent 20 years away from my family over the holidays, and I learned very early not to make a big deal out of the days we had off in November and December. When I’ve had serious boyfriends and we’ve lived close to their parents or grandparents, I’ve ended up at their houses, but if not, I’ve stayed at home and cooked whatever I’ve wanted to eat and overloaded on movies. A few times I’ve gone to friends’ houses – and one time that I did that, bringing my most recent ex with me, is a story still told today. My friend’s mom introduced us as, “Hi everybody, this is Chelsea, and this is ______, and they used to be boyfriend and girlfriend, and now they’re not, so I don’t know.” This was about 18 years ago, and when I reminded my friend, she started reminding her mother, and her mother finished the story, so yeah, it’s still fresh in her memory.
This holiday season really felt like a roller coaster. I received the results from the upright MRI. Just a few days after that, I received some medical records from a doctor I had seen one time for 20 minutes in August of 2015 when I was trying to find a primary care doctor who would take me on as a patient. I remember this one visit because the doctor had been so friendly, but I knew she was struggling with understanding the complexity of my conditions, and I had to repeat some information. I carried my previous records with me but she wasn’t interested in looking at them, she just wanted me to tell her again.
I was relieved at the end of the visit because it seemed like she was willing to take on the basic care like ordering my thyroid and cholesterol labs for my Hashimoto’s stuff. But then a week later I received a call stating that I had to find a new primary care doctor because she left the practice – she received notification that she passed an exam for a different field. I was floored. If you’re anticipating leaving, why take on new patients??
But the real kicker is getting her notes from that 20-minute visit now. Because I had to repeat myself, she wrote that I was “bragging” about my surgeries, and that I had Munchausen’s.
It’s really hard to read that in the same week that I received results saying that my brain has literally collapsed and I have tissue growing like a tumor and doing damage to my memory and speech. (Today I couldn’t remember why I called the county regarding picking out a vendor for medical assistance.) I still have a hard time talking about what’s going on, to get the words out. It’s serious. What’s happening is that the pressure in my cranium keeps rising, and it’s going to keep rising until it’s the same pressure as my blood pressure and I have a massive stroke and die. The two methods they have of treating it don’t work for me. First, the medication to reduce the CSF production has been proven not to make any difference for me. It’s been tried multiple times. Second, implanting another shunt isn’t going to work; I’m allergic to them all. I’m now at the point where I clog them and strangle them within days. I simply don’t have options at this point.
I also just got notes from a neurosurgeon from the University of Minnesota that I saw a year ago, from one of the guys I have nicknamed the Three Stooges. He was one of the three doctors who saw my MRI from July 2015 that had the beginnings of the slit ventricle syndrome and a smaller version of the tumor, and observed my fatigue, vertigo, facial droop, unsteady gait, and resolution of some of the symptoms when I tilted my head to move the fluid around. In my file he wrote that I “walk with a cane and can’t perform a tandem walk” but that I’m “fine.” He also stated that if anything changed, they would welcome me back to the neurosurgery department.
Fuck that. He’s not going anywhere near my brain when I’m unconscious. He obviously can’t handle it.
But the one bright light in all of this swamp of shit was that on December 27th, I received a voice mail from a case worker with the State of Minnesota. She simply stated her name and said that she approved my case for disability. As soon as I heard it, I immediately burst into tears. Being approved by the state doesn’t mean that I receive any kind of financial compensation, but it does assist me when I’m applying for housing – I can officially state that I’m disabled – and I also qualify for medical assistance as a disabled person instead of just a person living at or below poverty. It will also help to make my case stronger when it comes time for my hearing with the federal case, which I still don’t have a date for yet. My attorney thinks it’s still “some months” away.
3 thoughts on “Can You Repeat That?”
You’ve had some shit news and some good news, I’ll take the good news. About damn time!!
Now waiting for housing. And that damn federal disability hearing.
Keep up the fight. I know it can be done. They have to figure out a way to relieve this pressure.
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Thank you! Yes, finally something good, right? I appreciate your good wishes, as always. 🙂
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Hi Chelsea! First off, I just saw your lovely message on your previous blog wishing me a successful surgery and peaceful recovery. That was the sweetest gesture and I almost cried when I read it!! Thank you ❤. Unfortunately I got an email the day before, that surgery was cancelled again and now I’m on for Jan. 27th. So the saga continues……I am in a lot of pain these days and am useless most days but such is life.
I am so happy that you have finally been approved for disability!!! It’s about time!! I did a lot of reading and educated myself as much as I could on your condition and the terrible, life threatening complications you have been suffering from for way too long. The fact that you are allergic to the shunt and it doesn’t work properly, I would think the medical community would have an alternative to this as it’s not uncommon for our bodies to reject foreign objects. I know you have explored everything and continue to and are smarter than most of these so-called doctor’s!!! It floors me that so many doctors have let you down so brutally, let alone the piece of work that said you were bragging about your surgeries and thinks you have Munchausen’s……really, like WTF!!!! It’s hard enough to be disabled and to be fighting all these other battles!!!! They have GOT to figure out how to relieve the pressure off of your brain!!! I’ve had my share of bad doctor’s and surgeries, and know how it feels but not even close to the number of doctor’s you have had to deal with. I wish for you that this year you find the medical help you need and your disability comes through quick and easily for you. If you want to email me I would enjoy that anytime. I have great friends and some family members support, but everyone has a life and is busy and unless you’ve walked in these shoes, you can’t grasp the complexities of this life we live. I’m at firstname.lastname@example.org
Hang in there Chelsea and I am glad you got to spend time with your family!