I could say a lot of reasons why I haven’t blogged in weeks. But I won’t. It just hasn’t happened. I have a lot of posts in the queue, but not much action on them. Words are stuck. There’s a lot of things going on right now, mostly a lot of things going wrong. But the words to describe them? The words to describe how they change me, how it makes me feel? Those have been a little stubborn lately.
It’s funny, but I think my inspiration in getting this down on paper, err screen, is from binge-watching the show “You’re the Worst” the past couple days while I’ve had the flu (for the second time in 2 months by the way–funny how my immune system just laughs when I get the flu shot). I digress; the show is about this slightly miserable, but actually kind-of awesome couple, Gretchen and Jimmy. Against all their better judgement, they decide to be together, and as we slowly see, and they start to deal with, Gretchen has clinical depression. The beautiful thing about this show is that it doesn’t try to commercialize depression. It just is what it is, in all its guts and glory. And actually, it’s pretty goddamned accurate.
I’m always someone who has pulled up their bootstraps and moved on or moved forward in life. I’ve gone through SHIT, and I mean SHIT, situations. But I’m always the one who comes out stronger, who knows everything happens for a reason, who has no regrets. And all of that is true, honestly. But what I don’t talk about is how I feel like every little thing eats away in small pieces. I don’t know how long I’ve been clinically depressed. Far longer than I’ve been diagnosed and on medication, that’s for sure. But I don’t know that I would be this aware if my health hadn’t gone to shit 4 years ago (excuse all the swearing in this post). Nevertheless, all of my health issues hold depression on their list of symptoms too. So maybe it was inevitable, a perfect storm to make me more self-aware, and more accepting of reality. Who knows.
What’s going on, currently? To put it in one tidy little sentence for you: my health is shit, my work is shit, my confidence is shit, my weight is shit, dating is shit (or really I’m just not even trying anymore) and my friends and family are always awesome. I won’t get into work details on here. My health is completely upended and I feel like I’m starting over. Possible misdiagnoses, working on a second opinion and heading to UofM (then Mayo if need be), constant sickness, new symptoms, mismanaged symptoms, etc. My confidence is shit because my weight is shit and none of my doctors will pay attention to the weight gain that doesn’t even make medical sense. So the only control I have is a diet, negating the fact I probably have something going on health wise, and even that has been derailed because I got the flu this week.
But here’s the most frustrating part. I don’t mean this to be a woe is me type of post, not in the slightest. I just wanted to provide context and a lead-in to the next part I’m about to say.
I feel nothing. Honestly, all of that above should have me beside myself. And I have my moments, I’m not a complete shell. But the vast majority of the time, I feel nothing. Maybe it’s anti-depressants, though I don’t actually think so, because I don’t always feel this way on them. But the worst part is that I’m not sure what is worse: feeling nothing, or feeling out of control.
By the way: I should have slipped a disclaimer into this earlier. I’m FINE. There is nothing harmful going on, nor will there EVER be anything like that going on. Truthfully, I know I can handle this. But man, it’s a fucking wave, isn’t it? I guess, so is life, but those peaks and valleys don’t have to be so goddamn steep, do they?
Days at a time, I’ll figure all of this out. The bad parts don’t stay bad. Some questions find their answers. I guess why I’m writing this is to just hold myself accountable. I have depression and I struggle with it. But that doesn’t mean I’m clinically unhappy. That probably doesn’t make sense unless you understand depression, but I don’t know how else to say it.
Let’s just hope these big life factors cut me some slack, lay off a but, and simmer down some soon.
Depression is a dark and evil bitch. 🙂
(Sorry for the downer post!)
This post is a little overdue.. I think I might have been procrastinating it because there are many things to update with regards to my health. So I apologize that it’s a little lengthy. As per usual, it’s one step forward, three steps back, rinse & repeat, every few months. In other words, it seems as though I have a massive flare, and get ridiculously sick every few months.
It would be one thing to just accept the fact that chronic illness means that you tend to get sick more often than most–that part I’m okay with, or at least I have come to terms with it. However, this is usually a huge setback, massive illness, nights in the ER, etc. That’s not okay, nor is it normal.
As I mentioned when talking about my experiences at #MedX and #TXFM, I was in probably the worst flare I’ve ever had during my travelling. When I got back, I knew that I would get sick. With the back and forth on airplanes and in airports for almost two weeks straight, I knew that I would have caught something. In addition, I was in SO much pain. I could barely twist or bend over. I got blood work done and scans from my rheumatologist; with Remicade and regular medication, my blood inflammation levels were in the 40s (4 times higher than they should be when getting infusions). Two rounds of steroids later (curse you Prednisone), and the inflammation still hadn’t gone down. Then, I started to get severe body aches. It felt like the type of body aches you get when you have the flu, and then multiply them by 1,000. I could barely move.
Per my doctor, I went to the ER. They had to give me Adenosine in my IV to slow my heart rate down–I measured in at 165 BPM and 170/110 for my BP. Yikes. The doctor said it was because my body was in such distress from being in so much pain for weeks. After that was under control, we ran CT scans, blood work, and I finally got some pain meds (thank god for Dilaudid).
Luckily CT scan was clear (no pneumonia), but I still have elevated inflammation levels, some kind of infection, and, cherry on top, the flu. After antibiotics, pain meds, and days of rest–at least part of that started to get better. Once the infection and flu were out of my system, the pain was lower. But the inflammation levels are still in the high 30s. This is where we tag in Methotrexate.
I knew this day might come where my rheumatologist would want to add Methotrexate to my plethora of treatments. And I’m not 100% opposed to it (obviously, since I started taking it a little over a week ago). But it’s scary. The side effects are nothing to wave off: fetal death/birth defects (not planning on being pregnant anytime soon though anyway), nausea, hair loss, decreased liver and kidney function, etc. I have to get regular blood tests to make sure that none of these side effects are happening, particular the liver and kidney damage.
So what is Methotrexate? Well, simply put, it’s chemo. It’s a very low-dose form of chemotherapy. Just typing out those words gave me goosebumps. Methotrexate is a common medication for autoimmune arthritis diseases; but that doesn’t mean it’s without risk, or that it’s something I want to be on. It scares me. But I guess, I’m willing to give it a shot for a couple months until we can figure everything else out, and find out what we’re missing here.
This puts me in a position that is really hard to know what the right thing is to do. On the one side, I have toxic drugs that have the potential to cause very severe side effects on my body. But on the other hand, without the toxic drugs, I have high blood inflammation levels, which equals an active disease, which equals high risk of permanent damage to my spine. How do I choose the right thing, or the lesser of two evils?
I guess for now, I’m trying the drugs for a couple months, while I let a couple other things iron out.
I have an appointment to (hopefully) schedule a procedure to get a spinal cord stimulator implanted. If this happens, and if it works, it would lower my pain levels 40-80%. Thus, lessening the pain meds that I take, and protecting my liver and kidneys in the long run.
(Video is of spinal cord stimulator implant: from MedTronic devices)
Another thing in the works is getting a second opinion. I’m working to go through Mayo Clinic for this–but I have to see what is the best financial decision with my insurance. I know they’ll cover most of what I’m looking for, but I need to know the process.
It’s not that I doubt the treatment plans my rheumatologist has put me on and recommended. I don’t doubt his intelligence or ability. However, I’m not even 30 years old yet. I have a lifetime of disease to live, and more importantly, I have a lifetime to actually LIVE.
Quite the health update, I know. But that’s where we are. One step at a time, one day at a time. That’s #ChronicLife.
Today I have a post that is slightly different than the norm. As I mentioned, I recently attended the Mayo Clinic Center for Innovation Transform conference. During the first day of the conference, Mayo Clinic revealed their new Well Living Lab, a first of its kind! A huge thank you to their team for answering my questions and allowing me to teach you all a bit more about the Well Living Lab and how it came to be!
1. Explain the purpose of the Well-Living Lab?
The Well Living Lab is the first scientific research center to use human-subjects research to understand the interaction between health and well-being and indoor environments. The Lab will validate the real-world impact of indoor environments on human health and well-being, and generate an evidence-base that can be used in practical ways to create healthier indoor spaces. The Well Living Lab offers an unprecedented degree of control over research variables through a modular, reconfigurable space that simulates a wide variety of real-world environments. We also configured the lab with a variety of sensor technology that was unobtrusive (minimizing features like wires and other normal testing equipment that you’d typically see in a lab) and focusing on embedded sensors and wearables to create extremely realistic environments in order to conduct the most accurate human-centered studies and research.
2. How did the idea of the Well-Living Lab come to be?
Americans spend more than 90 percent of their time indoors-from homes to office or work environments, schools, retail stores, fitness centers, health care facilities, and more-which means exposure to indoor environments is at an all-time high. But what many people don’t realize is that buildings, and everything in them, can affect human health and well-being. We wanted to create a testing ground to study the relationship between buildings and human health and well-being more closely and couldn’t have partnered with a better industry leader in Mayo Clinic.
3. Who will benefit from the Well-Living Lab and how?
The lab will focus exclusively on human subjects. The knowledge produced by the Well Living Lab will spark innovation and change in the built environment to enhance how people live, work and play. The Lab also gives companies from around the world a unique opportunity to test products and services in real-life settings to better identify and validate potential health benefits.
4. Does the Well-Living Lab impact the patients? If so, how?
Yes, the Well Living Lab will impact the patients/subjects. For example, patients are often placed in sleep labs to observe sleep quality (i.e. connected to wires and monitors) since when a subject is observed in his/her own home, it’s impossible to totally control factors like meal times, light, sound and air quality. However, the Well Living Lab is outfitted with the most advanced sensor technology in the world, allowing Mayo’s researchers in the lab to monitor and observe subjects as they would normally behave (they will sleep in a normal bed while the sensor-rich environment tracks and records the desired biometric measures). This allows us to address the many behavioral aspects of sleep hygiene. We look forward to all that we will learn from observing patients in the lab’s sensor-rich and highly realistic environments.
5. What are some of the correlations between indoor environments and human health? (i.e: sitting for long periods of time) -What can we expect from the Well-Living Lab in the next 3-5 years? 10 years?
Many aspects of indoor environments impact health – often in unexpected ways. For instance, standard office desk and chair design compel us to sit for long periods of time, but scientific studies have shown this sedentary behavior to be harmful to our long-term health. In another example, standard indoor lighting conditions in homes and offices are not designed to account for the effect that light has on our circadian rhythm, which affects our sleep/wake cycle, mood and cognitive performance. However, light is not the only thing that can impact sleep; the acoustic and thermal environment has an effect as well. Each of these topics have been explored in some detail in targeted scientific and medical research, but few have been examined in the context of every-day life.
In the next few years we expect to identify and verify gold-standard methods for measuring each of these factors on real people, with minimally invasive techniques. Do low-cost, non-invasive sleep monitors really work? Which ones? What do they really tell us? If we combine the data from sleep sensors, light sensors, and personal activity sensors, can we improve the certainty of our measurement techniques? What is the value of all this data within the complexity of a real life? In less than 3 years, we will have answers to many of these questions.
Over the longer term, these new tools will allow researchers in the lab to investigate and tease apart competing and interacting variables, and ultimately lead us to a deeper understanding of how real features within a building can not only minimize harm but also help actively promote better health and improve performance and productivity.
6. Is there a correlation between chronic disease patients and a concept like the Well-Living Lab?
Yes, although studying chronic conditions is not the explicit goal of the Well Living Lab, our research will likely prove useful in identifying approaches to aid in effective management of a variety of chronic conditions. For example, those with COPD and asthma will benefit from a greater understanding and control of specific indoor pollutants that worsen these conditions; joint and muscle conditions like carpal tunnel and arthritis can be addressed through the lab’s research in ergonomics and furniture design. Studying behavior in the indoor environment, such as eating and activity habits, has the potential to generate new approaches to help combat obesity and weight disorders.
How cool, right?! I’m very impressed with what the Mayo Clinic is doing for health innovation. Our society is very focused on wellness and how to prolong life; concepts like the Well Living Lab allow us to research the best, and healthiest, ways to achieve this goal.
Thank you for the interview, Mayo Clinic!
As we wrapped up the last day of Mayo Clinic Center for Innovation Transform 2015 yesterday, so many thoughts are running through my brain. And said brain is mush, ya’ll. I’m traveled out. I’m conferenced out. I’m worked out. I need a vacation! But it’s all so worth it. I’m forever changed by all of the incredible people that I’ve met, the ideas that have been pitched, the businesses that have presented, and the stories that I’ve heard.
We talk so much about seeing the patient as a whole person and the concept of labeling. Yes, there is stigma around labeling. Yes, labeling can be detrimental and negative. However, sometimes we need labels and we have to stop living so black and white about them. Labels are traditionally benign and essential in conversation and innovation. The difference is the idea of malicious labels vs. idea-generating labels.
Getting a bit more granular about this is the concept of patient vs. person. I see some comments on social media shaming the use of the word patient because we should be considered a whole person and not just a healthcare term. Well, yes and no. As I always say, extremism of any kind, from either end of the spectrum, is not only dangerous, but just plain ignorant. I believe the most developed opinions trend more towards moderate than leftism or rightism of any kind.
I digress. I don’t find issue with being referred to as a patient. Frankly, sometimes I’m tempted to call myself a professional patient. Chronic diseases are not the typical healthcare model for care. I see at least one of my physicians in my care team a minimum of once per month. Usually I have a couple doctor’s appointments per week or every other week. If that’s not being a patient, then I don’t know what is. And it’s not offensive to be a patient. When did we get to the point where ‘patient’ was like calling someone the f-word?!
On the flip side of all of this, we are not JUST our diseases. I am not JUST fighting 6+ chronic diseases. I am a social media professional. I’m a woman. I’m a friend. I’m a sister. I’m an aunt. I’m a daughter. I’m a well-read person. I’m a healthcare professional. I’m an introvert. I’m a goofball. I’m a weirdo. I’m a cat-mom. Etc.
Yes, I am a whole person. But I am ALSO a patient. Yes, I am NOT my disease. But I do ALSO have diseases. It’s about creating a well-rounded person, not just defining us by one or two things. In fact, something that chronic disease patients know all too well is the necessity for multiple facets of a treatment plan, i.e. not one medication or therapy or lifestyle change will properly manage chronic disease. You need to balance using all of those options to find the happy medium. That applies to us as human beings as well. We are not just one thing. Humans are complex. Patients are complex. Life is complex.
On another note, as some of you might know, I spoke at the Mayo Clinic Center for Innovation Transform conference, Think BIG Challenge. I represented the persona of “I am NOT my disease,” titled Chronically Kristin. The premise was that various businesses needed to ‘pitch’ their innovation to me as a chronic disease patient, and then the audience would vote on which company was the best match for the chronic disease patient. The winner won $50,000 from the Mayo Clinic. First of all, I loved this format (like a dating game show). It was both innovative and health savvy. I would argue to say that the audience learned much more about the businesses and the persona than a typical business or sales pitch, which often turn the consumer off.
It was also such a honor to be able to share my story to 700+ people and speak bluntly about chronic disease and what that feels like on a day to day basis. Overall, the speech and Thing BIG challenge went SO well and we all had a lot of fun. Thank you so much to the Mayo Clinic Center for Innovation and Avia Health for including me, researching with my blog, and inviting me to participate in such an innovative way.
I don’t find what I’m about to say necessarily negative; however, it’s interesting and speaks to the discrepancy still apparent between the healthy system and chronic disease patients. I had a handful (3-4) people come up to me after the challenge and ask if my speech/story was real, or tell me that I was “so believable!” The look on their faces after I told them that I wasn’t acting, and that what I shared is real, and true, and actually my life was interesting. Be it embarrassment or shock, I’m not sure, but it does show that we have a long way to go in making these conversations commonplace in not only the healthcare system but in society as a whole.
I have a renewed and blossoming fire/drive to really work on this patient advocate side of my life. I do want to change perceptions. I do want to change our healthcare system for the better. I think conferences like MedX and Transform are making this a reality. Patients should not only be invited to the table but they should sit at the head. One phrase I heard his past week put it so well, with reference to patients: if you’re not eating at the table, you’re part of the menu.
These conferences have really changed patient-centric, or patient-first from just being buzzwords to being real and actionable. I will continue to change the world, will you?
Everyone has put this so well: I’m with my tribe. I’m around everyone who gets me. Never have I felt this connected and synchronized in my entire life. These people at #MedX; these people are incredible. Their stories, their lives. So similar yet so different. I cannot even put into words how I feel right now.
I am forever changed by #MedX. I plan to write about some more specific healthcare and ePatient ideas, but this is more of my thoughts post-conference. I am struggling today with a serious #MedXHangover.
Also, I’m writing this on the plane while 3 people around me have their shoes and socks off. Why is that okay? I have a case of the Mondays, clearly. So grumpy!
Another take away from #MedX for me is that I think I need to fight harder about some things with my illnesses. It’s clear that I have two main diseases that have caused other conditions: Ankylosing Spondylitis and Fibromyalgia. What isn’t clear to me are some of the severe symptoms I have that don’t necessarily fit either of those two conditions. I just feel like we’re missing something. And I won’t stop until I feel like I have everything figured out in order to have the highest quality of life. Excuse my language but right now, my health quality of life is shit.
Anyway, had to jot those down so I don’t forget to touch base on them later with all of my doctors.
I don’t know how to coherently spell out how I feel about #MedX and all of people there and concepts presented. It’s seriously changed my life, for the better. It has awoken this passion and drive, and dream really, that I thought was only smoldering below the surface. Well, smoldering no more, it’s a full blown fire.
Patient engagement, patient experience, patient advocacy, technology, social media, healthcare, chronic illness, provider/health system/patient, invisible and visible illnesses, eHealth, etc. Thats #MedX. And that’s what I want to do.
That’s all I have right now. My brain is a jelly mush, and I’m in too much pain to function.
I’ll update more later!
I’m currently out in Palo Alto, CA attending the Stanford Medicine X #MedX conference. A few hours into Day 2, and I know I need to get some thoughts down and try to dissemble the jumble of words floating around my head right now.
Also, it’s a world full of cosmic coincidence, because I happen to be in one of the worst flares I’ve had in quite awhile while I’m out here. Is my body trying to tell me that I’m with my people, I’m where I belong? Okay, okay, body. I get it. But maybe just a gentle tap on the shoulder next time? That’s #ChronicLife.
The first day of #MedX was overwhelming, beautiful, inspiring, humbling, and so many other adjectives. I am blown away by both the Medicine X program, and the speakers, patients, and leaders showcasing their skills, thoughts, and successes with us during these few days. My first reaction is that I absolutely have to speak at this conference next year. I have so many things I want to say–I’ll be applying again immediately after the application is posted.
Something that Medicine X has that I argue no other healthcare conference has touched, or succeeded at, is patient first, or patient forward thinking. #MedX is the catalyst for healthcare patient experience, innovation, and engagement. I’m so touched to be around people who fight and who are passionate about exactly what I am passionate about. As you all know through following me, my goal is to raise awareness, make others with chronic diseases feel less alone, educate, and feel connected. We CAN better the healthcare systems around the world. We CAN be patient first.
I have always felt like I have a unique perspective given that I fight 6ish chronic diseases and I work for a major healthcare system, a top 15 health system in the United States. It can be very frustrating, but I’m grateful to understand the thought process behind the consumer/patient, and the provider/health system. It can make it difficult to adhere on both ends of the spectrum. However, my empathy tends to be higher and more well-rounded than most. That’s not to say that there are not things I disagree with on both sides. And if I had to choose one, I would be able to do so with no hesitation. But both sides are invaluable at the end of the day.
I do plan to write some more granular posts about specific topics from #MedX, but that’s going to take some time. I need to digest and decompress afterwards. I’m just so motivated and inspired. I feel like I’m home. I’m with people who have the same goals for life as I do. People who get the way that I physically feel every day. People who understand the dire need to put patients first and to pay attention to chronic diseases and chronic disease patients. Just.. wow.
Another great part about #MedX is the diverse group of individuals offering their opinions, their experiences, their passions, and their work. The conference is focused on patients, on ePatients, but it brings together healthcare individuals from every avenue. Physicians, nurses, administrators, CEOs, health systems, scientists, researchers, patients, caregivers, inventors, and much more. This cumulative approach to healthcare technology and emerging concepts is what will break boundaries, knock down walls, and create change.
All I know, is that I will be a part of it. I have to be a part of it.
As I’ve introduced before and teased in my last blog post, I’ve been attending an intensive 10-week program at Mary Free Bed Rehabiliation Hospital in Grand Rapids, MI. To learn more about the basics of the program, read here.
The program incorporates nursing, medical, physical therapy, pain psychology, and occupational therapy. I’m about 2 weeks in now and have seen all members of my care team. I’m definitely excited, a little overwhelmed, but I’m trying to stay optimistic and do everything that is asked of me. I know it will only make me feel better and keep me healthier in the long run.
Since this is the first time I’ve talked in detail (other than introducing the program), I’ll go through my experience and take aways thus far.
Nursing: This part is usually just a triage. Talk about any changes, any medication updates, and taking vitals. So far so good there.
Medical: So far I’ve seen this as a touch base with the physician. Are my medications working okay? Should we have a goal to get off of any? Do I need refills? What are my goals of this program. It’s been preliminary so far, but I anticipate having more specific conversations as we move forward.
Pain Psychology: I’ve enjoyed this portion of the program. I’ve been going to therapy for years now, and I’m conscious of the fact that I’m a talker and it’s how I work through things sometimes. This is slightly different because the goal is to create this healthy relationship with my pain, as well as use techniques and exercises to bring awareness into my mind and body. So far, we’ve chatted about my goals, and things to focus on in my life for managing stress and work, etc. We’ve also practiced and worked on mindfulness and breathing exercises. These are challenging for me because I’m a stressed and anxious person usually. But I’m working on it. The biggest immediate benefit I’ve seen is that during the exercises the ball of anxiety in my chest and stomach seems to loosen some. So I’m excited to see more options and progress with this moving forward.
Physical Therapy: To me, this is one of the most important parts of the program given that I have 6 different chronic diseases, not just Fibromyalgia by itself. At the evaluation, I wasn’t necessarily surprised per se, but a little caught off guard about my range of motion and flexibility. As most of you know, my main disease is Ankylosing Spondylitis, an autoimmune arthritis of the spine. At some point in my life, my entire spine will fuse. That’s literally what Ankylosing means. Obviously that’s not ideal, but it’s inevitable. What I can control is how it fuses. If I can build up muscle and correct my posture enough to stay straight up and not slouch, then my spine will fuse that way. If my spine fuses and it’s in a slouched or poor posture position, there’s a far greater chance of complications like pneumonia or heart issues. This occurs because the rib cage doesn’t have enough space and there is decreased lung function. So clearly, the goal is to fuse straight and strong. Right now we’re taking baby steps. Arching backwards about an inch or two for 10 sets to try and loosen how stiff my spine is, while not going too far because that could trigger more inflammation. Also pelvic tilts will help with abdominal muscles and lumbar flexibility. Another exercise is walking 15 minutes, 3x per week. The end goal is 30 minutes of exercise, 5x a week. To start, we did a test on aerobic ability and capacity. My resting heart rate is kind of high (could be because of anxiety and stress), so we wondered how well I would be able to get my heart rate safely higher. But it went okay. Long story short, my age should be at about 155 BPM. For me to hit that, I just have to walk 2.8 MPH. I know it doesn’t seem like much, but it will make a world of a difference. And it’s really not about quantity; I’m not a gym rat or a bodybuilder. It’s about quality. This will help all 6 of my diseases actually. But we have to go slow. My body is finicky and sensitive, basically.
Occupational Therapy: Last, but certainly not least, I’ve gone through a couple sessions with the OT. This is extremely important for me because of the nature of my job. I’m sitting for almost my entire day and work in front of a computer or on my phone. This can wreak havoc on all of us, but especially on my spine and pain levels. Because my spine is slightly collapsed in the lumbar portion, and I have a tendency to sit and slouch, it can be very painful for me to sit for a long time. Or to sit at all. Anyway, we’ve worked on how to adjust my chair, put something under my feet, put something under my wrists, use support at my lower back, adjust my monitors, and more. I think this is going to make an enormous difference. Just testing it out during my appointment was crazy. I immediately felt so much better and pain free sitting there. I’m excited to do the adjustments to my office this week.
That’s about all I’ve experienced this far, as I’m still at the very beginning. But I’m so proud to live in a city that has incredible medical facilities. This program is amazing and I hope that other rheumatologists are referring their patients to the program for better pain relief and, ultimately, a better quality of life.
Sometimes it feels as though any options I have are just the lesser of two evils. That may be the case, but I feel like I have to accept that in order to make real progress. I’m a work in progress, as are all of us as humans. My health has very regularly been one step forward and two steps back. But I just have to focus on that one. Quality over quantity.
Stay tuned for a Periscope live stream this week. I want to know your questions! What do you want to ask me, or your doctors? Sound off in the comments!
As always, I so appreciate all of you. I try to remain 100% transparent for YOU! We have to raise awareness, so I’ll be as blunt or loud or open as I need to be to make our community known and to help others.
Hi everyone! How are all of you doing? In a couple days I will have a comprehensive recap and update for everyone on my first few appointments with the Mary Free Bed Rehabiliation Hospital Pain Center Program. Before that, I wanted to give you a health update, as there have been a few changes, and I want to record for my own benefit some questions and treatments to look into with my rheumatologist in a couple weeks.
I have been doing okay lately. Not atrocious, not good. But surviving! As far as my fatigue, pain, breathing, and tremors, everything is status quo. That means nothing has gotten better; however, nothing has gotten worse either. I guess that that’s a positive!
I have also been continuing to use the Arthritis Power app from Creaky Joints. Although my symptoms have not been going through much change positively or negatively, it’s still nice to hold myself accountable about tracking said symptoms. Additionally, if I decide to share these with my rheumatologist, it allows for a more robust history of my health. I always talk about how I wish my different doctors would read my blog, or follow me on social media (seriously!). It’s hard to have your care team truly understand your updates and questions when they are seeing a slice of you every month or two or three. My day to day is the important part. That’s where my quality of life needs to improve. That’s where my scary symptoms occur (a side note: my phone just tried to autocorrect symptoms to sunrooms, wishful thinking? LOL). Anyway, Arthritis Power continues to be a positive for me and for my health. I’m grateful to Creaky Joints for listening to patients and patient advocates and understanding what we need.
(Photo Credit: Creaky Joints)
So there have been a few changes to my health and/or day to day management. The first one is pretty controversial. I am still trying to weave through all of the information and research out there. I’m still back and forth on if this will be a good addition to my life and to my treatment. I have started to try (about 3-4 times) medical marijuana. I’ll be honest–I smoked a lot in college with my friends. However, that was usually accompanied by alcohol, and it was in a party setting. So a few weeks ago, I decided to try it in a relaxed setting (my own home) and, obviously, without any other substances. I cannot begin to explain to you the way that I felt. I almost burst out sobbing because I was TRULY, 100% pain free for the first time in 3 years. I mean, not just managed pain, truly healthy, with ZERO pain. You guys!
It was an overwhelming feeling. I experienced a rollercoaster of emotions. On one hand, I was estatic and could not believe how much I had forgotten what it feels like to feel healthy and ‘normal.’ On the other hand, it broke my heart and it confused me. It breaks my heart to realize what I put up with every day. How much I have gotten used to the immense pain of my daily life. How much I remain stoic, put on a brave face, and pretend. And I was confused because I’m not sure if I want to use medicinal marijuana. I see now how much it could help me with my quality of life. But obviously medical professionals are continuously learning about it. There is still a strong stigma around it. Now obviously I would only use it at night or on the weekends–I do have a full time, successful career to maintain. However, there are also ways to get pain relief without the ‘high.’ We’ll see. I’m still doing research/trying, but I do think I will be getting my medical marijuana card in the next couple months. If anything, I believe it will be good to have.
Another change: my doctor updated all of my X-rays, scans, and tests so that we had the most recent status of my diseases on record (it had been a year or so for some of the scans). Good and bad news. My inflammation levels are under control, which means the Remicade infusions are doing their job and working. My X-rays are okay. However, my other scans were like a double-edged sword. On one hand, they explained to us why I still have so much pain in my spine when my inflammation levels are managed. On the other hand, it’s a scary realization that I will have to monitor and be aware of moving forward. What we saw was that a couple of my vertebrae and adjoining cartilage/joints are effectively collapsing in on each other. Because of some of the damage I acquired before I was properly diagnosed, plus the time when we were trying to find a treatment that works, and ultimately because at the end of the day this is a degenerative disease, these areas in my lumbar spine are weak and not supporting my back properly. Especially with the natural effects of gravity. So I’m wearing a lower and lumbar spine immobilizer. It’s a black brace with bars in the front and back. The front is to build abdominal muscles which will hopefully support my back better. The back is to make sure I’m standing straight and not bending in on myself due to weakness and deterioration. It wraps around me and can be tightened or loosened for comfort. I don’t necessarily have to wear it 24/7 (it’s just a little unrealistic), but I need to definitely wear it sitting at my desk all day, and then as much as possible other times. I don’t wear it sleeping though.
So, yay! Ha. It is what it is. I just don’t want to get worse. And I’m scared. Guys, I’m scared like hell. I’m 27 years old. I’m scared of walking with a cane, I’m scared of eventually needing a wheelchair. I’m scared of not being able to work. Now, maybe none of these things will happen. I’ll work like hell to make sure they don’t. But it still could be a reality. Let’s just hope for the best.
So there you have it. Those are the updates. Next, I’m just going to list my questions for my doctor. I’m tired, and I’ll try to elaborate on these questions later. But at the very least, I will write a blog post that has all the answers to this once I see my rheumatologist.
If any of you have experience with any of the below questions or treatments, please let me know!
That’s all for tonight folks. I’m exhausted and will write more this week. 🙂