Swim – Jack’s Mannequin – 2008 … this song gets me through the tough days, the lyrics are at the end of this post. Just keep swimming. I received an e-mail from Northwestern University today reminding me to fill out my six month survey for their cervical artery dissection registry. I am happy to report … Read more swim
Raw Material. Refined Design. I am a bit uncommon, so I am loving this very unique watch from Jord Watches. The colors are beautiful, and the quality is stunning. It looks nice next to the morning glories! I have always been more into accessories than other fashion, and this watch is my new favorite piece. … Read more My Favorite New Accessory | An Uncommon Wood Watch by JORD
Yesterday I went back to the AbilityLab for a re-check. I’ve been really nervous for the tests, mostly because it’s hard to tell if you are getting better or worse when you are always in pain no matter what. I saw improvements with everything! One of the things I struggle with a lot is … Read more maintain the pain
While I can’t say I have been doing great, I have gotten some good news about my health that i want to share. I’ve also gotten some bad news, so I’ll share it all. I saw my Neurologist a few weeks ago at Northwestern. He specializes in stroke and neurocritical care. He is a really … Read more for good
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 🙂
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 🙂
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 ❤️
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!
I’m an INFJ. I feel like that explains a lot about me. If you aren’t familiar, it’s a personality type. There are 16 different personality types under the Myers-Briggs Type Indicator (MBTI). I’ve always known I was a little different, but I came to find out I am ever rarer than I ever knew! Only about 1% of the population are INFJ, so if you know me and think I’m a little different but couldn’t pinpoint it, here you go 🙂 I always thought so too!
I just learned about personality types last year and it has helped me learn a lot about myself, and why I do the things I do. If you have never taken the test before, take it here…MBTI Test and if anyone else comes up INFJ, tell me!! I suspect a few family members (especially my Dad’s side, the Gaucks) are also INFJs and probably my Dad before he passed away also, or at least something similar. I think my Moms side (the Andersons) are a more Extraverted bunch, so they are probably E -Extravert something. Either way if you take it, let me know what you got!
Information: Do you prefer to focus on the basic information you take in or do you prefer to interpret and add meaning? This is called Sensing (S) or Intuition (N).
Decisions: When making decisions, do you prefer to first look at logic and consistency or first look at the people and special circumstances? This is called Thinking (T) or Feeling (F).
Structure: In dealing with the outside world, do you prefer to get things decided or do you prefer to stay open to new information and options? This is called Judging (J) or Perceiving (P).
The test asks a bunch of questions based on Carl Jung’s Psychological Theories from the 1920-1950s and then tells you your personality type based on your answers.
I find all of this to be so interesting because my personality type matches me so spot on.
I’m not sure if I took this test when I was 22 if I would’ve gotten the same results, but after my accident I became much more Introverted, probably because I was forced to. I like being around people, but I need my alone time or I am physically and mentally exhausted. I recharge by sleeping and by spending time alone reading or listening to music. These are key Introvert traits.
Some of the other traits that I relate to are enjoying/recharging from alone time, being exhausted being around a lot of people (like needing a day to recover after a big event, but this also has to do with my health so who knows!!), people I don’t know think I’m quiet/shy or mean (and often a bitch/mean due to the Introverted curse ‘Resting Bitch Face’), but I’m usually just quiet when I don’t really know someone. I read somewhere that Introverts are too busy thinking, ALL the time (another Introvert curse, overthinking) and don’t usually pay attention to the expression on their face, this leads to RBF 🤣😂
This isn’t the same as being ‘shy’, because anyone that knows me or has known me a long time will tell you I’m not shy. It just takes me a while to open up a little. Everyone has some degree of both Introversion and Extraversion but mostly we all lean more towards one. I go way towards Introversion, especially when I’m not feeling well!!
The part about decision making is very accurate for me also. We all make decisions based on either logic (T – thinking) or on people and special circumstances (F – feeling). It might not always seem like it, as INFJ’s are pretty misunderstood, but my decisions are almost always made based on feeling and circumstances. This isn’t always a great trait, as it can get me into trouble, but nonetheless, it’s me!
“INFJs often appear quiet, caring and sensitive, and may be found listening attentively to someone else’s ideas or concerns. They are highly perceptive about people and want to help others achieve understanding. INFJs are not afraid of complex personal problems; in fact, they are quite complex themselves, and have a rich inner life that few are privy to. They reflect at length on issues of ethics, and feel things deeply. Because Counselors (The name they call INFJ’s, also called the Advocate on other sites) initially appear so gentle and reserved, they may surprise others with their intensity when one of their values is threatened or called into question. Their calm exterior belies the complexity of their inner worlds.
Because INFJs are such complex people, they may be reluctant to engage with others who might not understand or appreciate them, and can thus be hard to get to know. Although they want to get along with others and support them in their goals, they are fiercely loyal to their own system of values and will not follow others down a path that does not feel authentic to them. When they sense that their values are not being respected, or when their intuition tells them that someone’s intentions are not pure, they are likely to withdraw.”
Add this to my Chronic Illnesses and Pain, and we have a recipe for a homebound geek who watches Star Wars on Friday nights. I really do this, but I don’t want to do it all the time 😂😃 , so know if I am making an effort to get out, to see you, to do anything other than stay in my bed blogging, reading and watching garbage on TV, it takes a huge effort. And if I have not seen you in a while, I am trying to catch up with everyone, but I only have a few good hours a day lately and most of those hours are spent at Doctor visits…. At least I have a lot of free time now !!
The song is Alessia Cara, Here. She is a newer singer and a self described (in this song) Anti-Social Optimist, and an Introvert and I love her! It describes being an Introverted person pretty well! Also… the part about a friend in the kitchen Gossiping about her friends… seriously girls. This is why I cannot be friends with some people any longer. Why cant we all just get along. 😂😬😘
I have a really big variety of music I listen to. I think I pick up a lot of what is around me, and then I listen to it until I know every word and every song LOL, it’s just something I’ve always done! I know the entire Hamilton Soundtrack and I have not even seen the play yet! In fact I can probably sing 10 full musicals start to finish. I think I missed my calling when I was young 🙂 Right now I am obsessed with Cardi B’s new music so expect a blog post for one of those songs soon. My parents listened to everything growing up and all of my family members are big music fans too 🎶 🎵 🎼. My parents went and saw Bob Marley when they started dating 😂😃.
This song is kind of perfect for this week because I stood up to a Doctor yesterday, and while I ended up deciding I’m not going back to him, and told him that, I’m glad I did. I need Doctors I am comfortable with. This song is also great for pretty much everything going on in this country lately 🤣🤣
As someone who sees Doctors almost every day as of lately, I think it is my right as a patient and human to be treated with a little dignity and respect. This Doctor (Primary Care) didn’t want to fill out my forms for work and told me to never bring them back, to give them to my other Doctors. I think maybe I offended him because that was pretty much my only purpose for the visit, but that was all I needed!! I also think he just didn’t want to deal with paperwork. Great, I don’t either!! 😂
I have only seen him twice before so I don’t have many records to transfer and didn’t think he was all that great to begin with, but this is just getting ridiculous to find Doctors that will help. I need the form so I can keep my job and Insurance for my husband and me. No big deal. While this is probably the Doctor’s last priority, it is my first, and I will find someone else I can rely on to help me with paperwork. I have had good Doctors in the past who have been helpful with it, but of course they were unhelpful in other ways. He did fill it out for me, but now I need a new Primary Care Doctor, again 😂. Taking suggestions if anyone has one they love in the Chicago area. If I don’t find one nearby I am just going to transfer everything to Northwestern. I think that will make my life easier, other than the hour it takes to get there, this guy was down the street.
In better news. I love my new Pain Management Doctor and she is working with me, so I will focus on that.