First published on March 29, 2012 at 12:29 p.m.
I believe that I have finally connected with a doctor that can help me figure all of this craziness out! ♥ Physically, nothing much has changed as far as my numbness/weakness goes. BUT. My heart feels SO GOOD and light and free after my hospital follow up appointment with my primary doctor today! And that can seriously make so, SO much of a difference ♥. My primary doctor is awesome but she is really hard to get in to see - she's usually booked 1-2 months in advance. So when things started to get super scary (the Walgreen's Incident) I started seeing a really great PA in West Duluth (who turned out to be AWESOME and a great advocate for me) because he was the only person in the network available immediately after my Walgreen's scare. And he has been super great - even calling me in the hospital to see how I was doing ♥. However, throughout my crazy week in the hospital, getting incredibly expensive treatments for a syndrome that two neurologists now say I do not have, there was a lot of talk that my primary doctor should have been orchestrating my care plans from the beginning. My dad agreed and was actually pretty mad about that whole angle, but I was able to see her today, and I am SO glad she's in the mix of things now. This afternoon I filled her in on pretty much everything that has been happening since Sunday, March 4th, aka Day One. When I got to the part where the neurologist said that I was perfectly healthy, did not have Guillain–Barré Syndrome, and was probably just suffering from stress, her immediate response was "NO. No, no, no, NO. I do not accept that. There is more to this than that. I do not accept that that is all that is going on here. I don't know WHAT'S going on here, but we are going to get to the bottom of this. And we are NOT simply going to chalk this up to you having a series of bad days." That was exactly what I wanted to hear from the person in charge of directing my health care plan! I'm sure the neurologist I saw on Monday is great when it comes to his area of expertise, but I felt incredibly blown off and dismissed when he just sort of announced, "You don't have Guillain–Barré Syndrome. No need to have any more follow ups. You are perfectly healthy and just need to learn how to handle stress. Make an appointment with a psychiatrist." Okay, I KNOW that stress really can be a killer and can absolutely manifest itself physically in your body in terrible ways. I am NOT at all down playing that. And hey! I think therapy is a great thing, and I'm sure just about every person in the world would benefit from a lil' therapy here and there. We all have our mommy-issues. BUT. The idea that this was nothing more than me not having enough positive outlets in my life was NOT satisfactory to me. Not at ALL. I wanted to yell "Don't you dare just Pontius Pilot me!" (get it?!) but at that point I was still reeling from the relentless spinal-tap-brain-fluid-leaking headaches and was more focused on not puking. Good god those awful headaches can really suck the life out of you. Like, worse than Harry Potter-style dementors. And I am SO happy to report that, on the headache front, life has gotten a million times better ever since they put that blood patch on my leaky spine-hole! I still have minor head aches when I move certain ways (bending over is daaaaangerous!) but they are nothing like the face melting headaches I was getting before. My doctor told me that from what I was reporting, the blood patch was probably doing its job, and that while mild headaches could possibly still arise for another week, they would be nothing that a little OTC meds couldn't handle. Hands down the best news of the day ♥. Anywho, back to my Mystery Illness. My doctor ordered a bunch of new labs to be run (how is that I am not yet used to getting needled every other day? Does anyone ever really get used to it? Still not my favorite thing...) and saw some "interesting" things regarding the protein levels that came out of my spinal tap. Things that hadn't been examined more closely the first time around. Now, she (and I) still don't really have any idea what's been making me loose the strength in my legs, but just having her on top of it really brings me so much relief. Almost as much relief as figuring out what this is will bring me. We ended my appointment with a quick run to the lab, as well as to Physical Therapy, where I started the process of getting regular PT sessions set up in order to help me retain the strength that I currently do still have in my legs, etc. I asked her if I needed to set up appointments with a psychiatrist, and she said no, that she has "definitely seen people come in with problems that will work themselves out with the right therapist. But this is not that situation. You can certainly talk with a therapist if ever you want to, but I do NOT believe that stress is the source of these particular problems. I have seen cases like that - it does happen - but this is not that situation." Again, I think therapy is a great and wonderful thing and can really help a person live a well balanced life. And I have no problem accepting the fact that certain stressors in my life probably did not help out my current medical predicament. What I have a problem with was how I felt that the neurologist used "stress" as more of a blow-off answer than anything else. And it is very validating to hear that my primary doctor is of the same mind. I'm hoping to get more answers when my labs come back. And so, we're back to wishing and hoping and praying that whatever this is is easily treated and will not leave any permanent damage behind. As always, finding hope in little things really helps pass the time. My dad says he thinks that I am moving around with my sweet-ass cane much better than I was last week. That is a positive :) The blood patch working? That is a HUGE positive. And my friends and family are the biggest positive(s) of all ♥. When I was readmitted to the hospital on Monday and Tuesday, I had such wonderful visits from Tara and her friend, Kristin (who snuck over to the hospital on her BREAK), the fabulous Cole, and of course Sarah and Robin (I was SO lucky to have you two wonderful ladies working on my floor! ♥). Today I also received wonderfully lovely and thoughtful cards from Suzey & Big Toby, the wonderful Katy Stech, and a bag full of goodies and love from my other family, The Moroffs ♥. Thank you so much to all of you, and to all of you who read my posts and send me love. It's physical therapy for the soul ♥.
P.S. Yes, I agree with all of you who have wished we could sic House on this case :) And I am really happy that "Guy On A Buffalo" has brought as much joy to many of your lives as it brought me during my stay in the hospital, hahaha :) I shall now re-post it below for everyone's viewing pleasure! ♥
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