Go For Broke

Sometime you just gotta go for it.  That was how my most recent hospital stay ended up, and it worked out well and I am feeling very optimistic about feeling better.

It has been a bumpy road to get here, but I had a long heart to heart with one of my Doctors (one of the Neurologists) while I was there this week and just voiced all my concerns and issues, and how miserable I have been (pain wise), and while she seemed like at first she was not going to be able to do anything to help, she ended up going way out of her way to help, and that gives me a glimmer of hope that there are still some people out there trying to help 🙂 I don’t really like people feeling bad for me, so I tend to downplay my issues, but sometimes I gotta just tell it all, ugly crying and all….

Basically, she got a Pain Management doctor come to see me in the hospital.  No one seems to belive how much pain I am in, and the medication they have been giving me has not helped.  Note: I feel like they don’t belive me, but I think it is mostly Doctors being scared to prescribe medications, because I have NEVER had so much trouble in 8 years of dealing with pain.  The medication I was taking makes me tired, and crabby but doesn’t do much for the pain.  Well, after talking with the Pain Management doctor at the hospital, my doctor (the Neurologist) called my pain management doctor to give her the recommendations.  It’s all really confusing, and somewhere along the line there was definitely some miscommunication, but my pain management doctor did end up prescribing me something that seems to be helping more so far! 🙂

Also, next week I will start seeing someone at the Shirley Ryan Ability Lab.  My Neurology team referred me there, since I am having so much trouble getting this pain under control. This is the old RIC in downtown Chicago, and it is supposed to be a FANTASTIC place that I know of at least 3 people personally who they have helped, and I am sure I will hear of more now that I am going there.   I am really excited, as I think they will help me more than anyone else has been able to 🙂

So while this hospital stay was still pretty terrible, I came out with a few good things to look forward to, and more hope that there are Doctors who will help 🙂

**The song is Machine Gun Kelly feat. James Arthur ‘Go For Broke’  it fits with this week 🙂

#ONWARD

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Spoonman “the Spoon Theory ” 🥄

The spoon theory is a great way to explain chronic illness/chronic pain to someone that has never experienced it.

A woman named Christine Miserandino made up this theory while dining with a friend to explain the limited energy most people with chronic illnesses have.

Miserandino suffers from Lupus and while each condition is different, the spoons each activity take are universally the same/similar (for the most part).

She explains that at the start of each day a “spoonie” gets a certain amount of spoons to start with. We don’t get to choose, it depends on a number of factors. Let’s say we start with 12. Did I do a lot yesterday? Minus 2 spoons. Did I sleep enough last night? No, minus 3 spoons. I am starting with 7 from the beginning of the day. I shower, minus 1, I do my hair, makeup and take my morning medicine, minus 2 (2 because I am a lefty and my left arm is impossible right now). Catch up on email, my blog, social media etc for an hour, 1 spoon gone. It’s 10 am and I have 3 spoons left for the day and plans tonight. I have to rest the remainder of the day to save my 3 spoons to go out later. Add in Doctors appointments or tests or something unscheduled coming up and my spoons are all gone, or I might start borrowing from tomorrow.

This makes me be very creative with my days and my energy. I try to schedule no more than one main activity a day, but sometimes that is impossible. Today for example I have two appointments and plans for dinner tonight and I woke up with a terrible headache.

I already cancelled my first appointment. It was physical therapy, but is near impossible with a headache. I might have to wait a few weeks to start back up, currently it seems to be making me feel worse. I can’t even imagine letting my physical therapist touch me, let alone massage me right now!! That saves a few spoons for later. My life is constantly trying to save energy for something, or resting for an appointment. Showering has become a real energy sucker for me lately. I’m usually in a robe trying to get dressed for an hour after I shower. I like hot showers as it helps relax my muscles, but the hot water makes my blood pressure go higher so sometimes I get lightheaded and need to lie down afterwards. Hot showers cost 3 spoons, warm showers cost 1. Mostly I choose warm now 🙁        Recovering after the hot shower is another spoon.

Hopefully this helps make sense of my limited energy, and what “spoonie” is, or why you might see this term on my profile or comments 🙂

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The song is “Spoonman,” by Soundgarden. There aren’t many songs about 🥄 spoons, but 90’s rock/grunge is my jam 😂.

RIP Chris Cornell. A beautiful voice taken much too soon ❤️

#onward

We’re not Gonna Take It!

“I call these photos: Being a Rebel” 🤣😂🤣

I love this song. I’m referencing it because it feels pretty good to have a few Doctors who are working with me and helping me figure out what’s wrong. As for the rest of them… I’m done! The only one left to find is a good Primary Care Doctor, and I am going to go to Northwestern for that. I think it makes the Doctors job easier and my job easier for them to have all of my current records available. I can’t keep traveling with a binder of test results and diagnoses to try to convince these doctors I am in pain. I have to travel over an hour to see these doctors now, but it is well worth it.

I received a letter in the mail from Northwestern today asking me to be in a research study.  This is the second one they have asked me to be in so far.   The first one is “Prospective, Observational Cervical Artery Dissection Registry.”  This new one is “Efficacy of Gadoterate in Diagnosis of Vascular diseases Using MRA.”  If these sound like they are in a different language I am pretty sure they are!

The first one is described on the paperwork I was given as, “We are asking you to take part in this research study because you have a cerebrovascular abnormality called cervical artery dissection that requires evaluation and/or admission to Northwestern Memorial Hospital.  This research study is a registry, which is a collection of observational information regarding patients with this abnormality.”

Basically, they will follow-up with me intermittently to check on my status, and are doing this with others with similar “abnormalities.” They will see how I am doing with symptoms and pain every few months.

The second one, which I just received an invitation to is described as, “You are being asked to participate in this research study because you are a patient at a Northwestern Memorial Healthcare Corporation entity, who recently completed a Magnetic Resonance Angiography (MRA) scan.  This scan was ordered by your doctor  to evaluate the blood vessels in your neck, chest or abdomen using the contrast agent gadobutrol which is the standard of care contrast agent at NMH.  Contrast agents are chemicals that are injected into a vein and which then travel through the bloodstream.  These chemicals act as dyes to make MRA images brighter.  An MRA is a type of magnetic resonance imaging (MRI) scan that uses a magnetic field and pulses of radio wave energy to provide pictures of blood vessels inside the body.”

I have gotten SO many CTs and MRIs/MRAs with contrast over the years.  It is how they have diagnosed all of my vascular issues, including this most recent one (they diagnosed my dissected artery with a CT with contrast).  I am weirdly excited that they asked me to participate in this one.  Not only do I get a free MRI, but they will also pay me $50 to participate.  #WINNING !! It says also in the notes sometimes they are able to diagnose unknown conditions with this study, and if they do they will notify me.  I will have the MRI/MRA next week, I figure if I can help out in some small way, especially in diagnosing vascular problems, you can sign me up!

#Onward!