Chronically Kristin
The Inner Musings of a Chronic Disease Fighter Determined to Win
A warning to Fibromyalgia sufferers…
I needed a place to voice my frustration and concern over a common Fibromyalgia treatment. I haven’t visited this space in a ridiculously long time, and I won’t sit here and promise that I’ll be here on a regular basis. But here we go.
I’ve spent about a year and a half determined that I wanted a better medication, a stronger medication, a different medication for my battle with Fibromyalgia. I’m aggressive with my health and the treatment of my autoimmune diseases. ‘Good enough’ is usually just not good enough for me. So I’ve pushed my doctor, and I’ve demanded new options, and I don’t necessarily regret that for other aspects of my health. But for Fibromyalgia, it’s a different story.
As a bit of background, it’s common to treat nerve disorders like Fibromyalgia with anti-depressants. Specifically, serotonin re-uptake inhibitors. They target the same signals in your brain that talk to your nerves about pain levels. So naturally, I did my research and I tried a couple of the medications.
I’ve been on Duloxetine (or Cymbalta) for a little over a year now. I’ve gained a mess of weight, but I’ve been pain free with Fibromyalgia.
Regardless of being pain free, I’ve thought a long time about how I’m not thrilled about being on too many medications. I’ve wanted to get off the Duloxetine and Fibromyalgia medications, and basically deal with any pain I might get back as a result. So, about 5 days ago, I finally decided to quit Duloxetine. You aren’t supposed to quit cold turkey..I know that. But I couldn’t take it anymore and I just needed the meds out of my system and gone. I refuse to take one more of those pills.
After 4 days of feeling depressed, having crying bouts, brain fog, and zapped energy, I’ve finally found the correct research that talks about these withdrawal symptoms from this medication.
I’m willing to stick with it, I know these symptoms won’t last forever–but my anger comes from the lack of education any physician gives about how it feels to come off of this drug.
It’s frustrating that this drug could become a total crutch for some people. I know that I have a strong handle on myself, and that I can push and push and push through these symptoms for a couple weeks. But there are so many others not like me that feel hopeless and helpless by the withdrawal. It’s scary to me that a drug can do that to people when you thought it was helping for so long.
Needless to say, you couldn’t pay me to take this drug even one more time. And I look forward to feeling 100% after it is completely out of my system.
Shame on the drug companies, and shame on the physicians for the lack of education around this treatment.
A bit of advice y’all: take the Fibromyalgia pain–I’d rather have that then what I now know Duloxetine has done to my body.
On being ‘selfish’…
One of the biggest struggles that plagues millennials (and obviously others), in my opinion, is selfishness and priorities. We are at a stage in our lives–before spouses and children for most of us–that we struggle to understand where each facet of said life belongs in the long-term. Obviously, once spouses and children come into the picture, priorities shift in an entirely different manner. Simply stated, we are at the juncture between figuring out what your priorities are and taking that list and figuring out where each item belongs. After that, or possibly piggy-backing off of priorities, is the notion of selfishness. I think the word ‘selfish’ is one of those words that I wish was better used elsewhere. What I mean is that when someone says ‘selfish,’ they automatically think the worst connotation of that word. (Kind of like the word ‘arthritis’ in rheumatoid arthritis–it should really be named rheumatoid disease….but that’s another post in and of itself).
I think there are two spectrums of the word ‘selfish.’ Unfortunately, there are plenty of people in this world that regularly live their lives full of selfishness out of or with malice. On the other hand, there are individuals, who should be applauded in my book, who are living their lives full of the type of selfishness that is needed to take care of yourself-physically, mentally, and emotionally. The kind of selfish that when you put yourself first, you’re doing it so that you can be a better person and a healthier person. See the difference?
Too often I think those individuals who are trying to live their lives so as to be the best-rounded person are still criticized for being the type of selfish that is full of malice. What should be happening is a celebration of the fact that there are people who care enough about themselves and, realistically, about those around them that they hold importance in making sure that they are continuously focused on improving their being. That sense of independence, confidence, awareness, etc. is the absolute opposite of malicious in intent.
Relating this concept to myself (because I’m supposed to do that for this blog, aren’t I…) –>
Well, I will say this. I can say, with utmost certainty, that I have never, not once in my life been selfish with maliciousness (thank you to my parents for raising the type of children who don’t even know how to add maliciousness into themselves). And I can also say that I am usually the person who never puts myself first and always makes sure that the important people in my life are taken care of before I am. That’s not to say that I regret ever doing that, but it is to say that it has taken a situation with my health for me to realize the importance of selfishness for the betterment of yourself. Rheumatoid Arthritis (Disease) has knocked me flat on my ass (some days, literally) and acted like a tornado ripping through every thing I’ve previously thought were true or real. I have never experienced or even imagined the severity and the type of pain that I’ve been forced to experience every day and night for the past six months. I have never been more tired mentally and physically than I am right now. I have also never been more terrified.
That being said, I have never felt more content in the realization that I need to spend some serious energy (the little that I may have left) on myself and my health. Nothing forces you to put yourself first a little bit more than an autoimmune disease. So, have I chosen to be selfish (starting today) in the near future? Yes. Yes, I have. And yes, I need to. I would never intentionally hurt anyone throughout this process, but I can guarantee that what some people have previously been used to (with regards to my time, energy, and attention) will not be possible. I do not have the energy. Coming second only to my health, is my job (and I am beyond grateful for the type of job I have, and for being able to do what I love day in and day out). And coming (tied) only third to my health and my job, are my family and friends.
This segways into my thoughts on a person’s priorities. I can only hope that someone’s priorities are always in check and always in the right places. But I can understand the fact that not every one needs, or possibly should have the same set of priorities. But mine are non-negotiable, and frankly they always have been that way–with myself being the exception. It’s a big change for me to put myself (my health, most prominently right now) at the tip top of my priority list, but I’m kind of excited about it. I’m excited to focus on myself and focus on my health in order to be the very best Kristin for the rest of my priorities to experience. That will take time, and I’m willing to allow it to take as much time as necessary, but it will also be time well spent.
Thank you to every single priority of mine for your love and support.
xo,
*K
On being real (and truthful)…
Disclaimer: I’m about to rant, and possibly complain, but..it is what it is.
I haven’t always felt this way (it has taken growth, confidence, and independence); but I can honestly say, that I sit here today, at this point in my life, in 100% honesty, truthfulness, realness, and sincerity. What you see is really what you get–as cliché as that may sound. I wear my heart on my sleeve. I don’t participate in dramatics. And I simply cannot always get behind a ‘fake it until you make it’ mantra.
In saying this, I’ve reached a point–albeit temporary, I know–where I’m plain annoyed, exhausted, and frustrated. My positivity is damn near gone, and I’m sick of feeling guilty about that fact. I’ve been in chronic, immense pain for 6 months now. I’ve done nothing but hurry up and wait with regards to my health and this diagnosis. I’m aware that in most cases, there is nothing to be done over such a fact; however, it doesn’t take away the frustration in waiting for appointments and results and the like.
The bottom line is that I’m just sick of putting on a face. I’m in pain day in and day out. I don’t know what sort of symptoms and new discrepancies I’ll wake up with each morning. I’m exhausted beyond the very idea of exhaustion. And I literally, quite frankly in fact, feel as though I’ve lost control of my own mind and body, as though I can feel my body and my joints deteriorating. And the worst notion is that there is, at this current junction, nothing I can do about it. Nothing I can do until I wait…
I guess what I’m trying to say is that I’ve gotten sick of putting on a happy face. Strength? I have that down ten-fold. But positivity? I’m just not feeling it right now. Bless my loved ones for saying: ‘Stay positive,’ ‘Don’t focus on the negativity,’ ‘It’ll be okay,’ etc. I appreciate (truly, I do) the sentiments, the well-wishes, and the urgency in remaining positive. However, what I want now, more than anything is just an acceptance of reality. I want to cut the bullshit. I mean truthfully, I’m exhausted as is–why should I waste strength and energy in being fake too?
I don’t mean to be a complete downer here. And I honestly know that positivity is important and that I won’t always feel this way–physically and mentally. Nevertheless, I also don’t think I should be made to feel guilty for wanting to wallow a bit. For not having the sheer energy to not drown a bit under this diagnosis and this pain. It drives me crazy to think that what I should be doing is to make sure I’m not bringing any one else down. Like it’s my responsibility to make sure what is happening to me (and only me let me remind) isn’t making any one else sad, or angry, or what have you. I hate to sound cold here, because that in fact is truly unlike me, but I also have to be true to myself. And right now–this is me. I’m sad. I’m angry. I’m frustrated. I’m hurting.
I’m annoyed at the positivity oozing out of the people closest to me. Purely annoyed.
For once in this entire process, I want to cry and scream and frown and be OKAY with doing that. I want to be real. And for right now, my reality is temporarily negative and depressing. And, as weird as this may sound, I just want to bask in that for a little while. I want to be able to say, you know what, god damnit, this really does suck. I really feel awful. And how am I feeling today? The same, maybe worse, but no better, yet.
Any way…
I know this is a rant, this is complaining, and this is a depressing post. But I’m trying not to feel guilty about those aspects. It’s human for me to feel comfortable on that end of this spectrum too. And I truthfully believe it’s unhealthy to pretend that the cons, in the pros and cons of this diagnosis, don’t exist. I won’t apologize for a post like this or feeling like this.
This too shall pass… (but while it doesn’t–this is what it is–take it or leave it, but I personally have to take it).
Bottom line: There is strength in the breakdown. There is physical and mental toughness present in the ability to acknowledge the truth behind how you’re feeling and living with said feeling instead of burying it.
Much love,
*K
On being a Millennial…
I’m fascinated with the ever-evolving conversation over generational differences and classifications. On the one hand, I’ve read many articles that are downright amusing in their definition of generation characteristics. On the other hand, some of them are just downright true.
I’m a Millennial. I was born in the late 80’s. And I’ve grown up in this age of constant change–especially technologically. As a disclaimer: I’m a tech nerd. I love digital communications and thrive in my assigned generational range. However, the discussion is interesting to me on the strengths and faults of baby boomers, Gen X, and Millennials. I recently read an article in Cosmopolitan Magazine of all places (I know, I know–guilty pleasure okay?) discussing how to navigate different generational personalities in the workplace. One of the reasons I’m fascinated by this is because it’s interesting to be a 20-something, just starting out in your career, trying your hardest to work hard, stand out, and, ultimately, be taken seriously amongst a team of individuals more than likely many years your senior. And with that seniority, an unbeatable amount of knowledge and experience.
According to the article in Cosmopolitan:
These days, the workplace oftentimes has a mix of Baby Boomers, Gen X, and Gen Y/Millennials working together. Baby Boomers (born 1946 to 1964) are typically competitive, hardworking, experimental, and truth-focused. Gen X-ers (born 1965 to 1976) are typically self-reliant, practical, independent, and rule-breaking. Millennials (born 1977 to 1997) are typically immediacy-obsessed, i.e. the Google generation, tolerant, confident, rule-following, and mentor-loving.
So I have pros and cons to classifications such as these. First of all, none of those personality characteristics are set in stone with any one generation. Second of all, this places us all in a mold that, if recognized in the office, will be hard to break out of. In my opinion–and this is directly stemming from the fact that I myself am a Millennial–Millennials are a unique, interesting, and innovative group of individuals. Generally speaking, we’re social media, or digital/technology, focused and believe more in the notion of “perfessional:” the idea that our personal lives are no longer a separate entity from our professional lives, in that we use our personal lives and platforms as an extension of our professional goals, aspirations, and focus.
So how do we form a cohesive team of generational gaps in the workplace? Here are some tips:
-Get personal (albeit, selectively): sharing that you volunteer, or mentor, on your personal time can reflect positively on your colleagues’ and boss’ impression of you. Note: sharing your drunken escapades or the latest fight with your boyfriend/girlfriend and/or best friend does NOT fall under the ‘good impression’ category.
-Ask about extras: A lot of individuals think Millennials expect overly flexible workloads or hours. Prove your team wrong by looking for extra projects, workshops, or mentorships.
-Respect the chain of command: Yes, this still applies today. Going to the President of your company with a problem and skipping your direct supervisor makes everyone look bad, yourself included. There is still something to be said about paying your dues and respecting those individuals that have already paid theirs.
-Make it about them: Another negative stereotype of Millennials is that they can be demanding and need too much guidance. This may be true in the overall sense of the notion (a lot of us are just starting out in our careers, after all); however, a way to achieve the feedback we want without overwhelming your managers is to set a meeting with them to cover all questions and concerns, rather than the continuous questions.
I’m almost 25. In no way am I even remotely close to an expert, or a veteran of experience. Nevertheless, some of the above comes from closely listening to my peers, especially those more mature in age and experience than I am. And the rest comes from personal experience of mine.
Like I said, the mix of generations in the workplace is interesting and unique, but it’s also exciting in that today we have the opportunity to idea generate from a wider range of mindsets.
My peers knock me sideways daily with their creativity, innovation, open-mindedness, and pure gumption. I do love Millennials.
*K
On Being Tough…
People have different interpretations on what ‘tough’ is. On what ‘strength’ is. On what ‘pain tolerance’ is.
Realistically, it doesn’t quite matter where a person falls on the varying degrees of those three notions; what matters is how you feel, how you experience a situation, and that residual affect. In other words, the only person you have to prove anything to is yourself.
This is arguably the hardest realization for me. I am a strong person, an independent person, and a tough person. As much as I don’t like to admit it, I have a very hard time accepting help from anyone, or having anyone ‘take care of’ me. I like doing everything myself–to a fault, I realize. I think maybe I have a fear of being pitied, or being a burden to those around me. My rational, positive self obviously knows this is untrue and somewhat ludicrous; nevertheless, I’m very careful on what I talk about, how much I talk about it, etc. I guess you could say that was the jumping off point for starting up a personal blog again. I’m working on not feeling guilty about anything I write here. And in turn, this outlet will end up preventing me from even wanting to talk about it in ‘real life.’ (I hope).
Here’s the problem with my resistance of help and care–now, I actually need it. And I have to admit to myself that in present day I’m in a situation where I either ask for help, or don’t do certain key tasks (open a bottle, carry something heavy, do my hair, bend to pick something up, etc). This penchant to do everything myself is being put to the ultimate test. And I’ll admit, I’m working on it. But this is something that I know will take a lot of work and time on my part to be able to accept.
One thing is for certain though–I have the most amazing people in my life–personally, professionally–who are willing to help, be supportive, understanding, and the like. You know who you are–and I appreciate you all more than I could ever say. Bear with me here. 🙂
Symptom update:
-Everything is pretty stagnant right now in terms of symptoms and severity, no changes, no improvements. Right hand seized up into a claw (Liar, Liar anyone?) again this morning, so residual pain from that is rather severe.
-Overall, been having a pretty rough go at it for the past week to be brutally honest. Staying strong. Counting down the days..
Much love,
*K
Disclaimer: I promise that not every post is going to be about RA; however, this diagnosis is very new for me. I’m not even close to completely processing it. SO–hang in with me. Right now, this is a needed sounding board for me to work through my thoughts and issues with my new diagnosis, and consequently, my new lifestyle.
Let’s get right into it
I’m going to pass on doing the whole obligatory ‘hello. this is why I’m here’ post. (For more on that, read my About page). Let’s jump right in. A lot of what I write, vent, or stream of conscious about here is for my personal benefit and reflection (along with my close friends and family too). In saying that, forgive these posts for not being my best journalistic work, and forgive them for being rants and raves at some point. This is my life.
Here goes nothin’.
So, if you know me at all, you know that I’ve struggled with illnesses, injuries, and overall plagues of sickness or what have you for my entire life. I don’t remember much from when I was younger to this regard, but I can pinpoint the end of high school and beginning of college as the time in my life when I personally started to notice and wonder why I kept getting sick. When I say sick, I’m not talking about colds, or the flu, or strep throat (and believe me, I experienced plenty of that)–no, I’m talking the unique stuff. Pleurisy, pulmonary embolism, heliobactor pilori, pneumonia, mononucleosis, etc. I would bet that you haven’t even heard of a good number of those–yeah, neither had I.
I’ve also had joint pain, aches, fatigue, and more for at least the past 10 years as well. I’ve just always chalked that up to having 4 knee surgeries in high school due to basketball injuries.
But alas! Here we are in present day (well, let’s say 6 months ago). With new (better) insurance coverage, I decide to finally get my hip pain checked out. No problemo, I say. I probably just need to strength train, some PT, whatever. Scans show no tears, breaks, etc. GOOD NEWS! Off to PT, I continue getting worse and now have immense back pain. BAD NEWS! Back to a new doctor, off to get some more intense bone scans, x-rays, etc. Back pain is rampant at this point (and hip pain on left side).
Here comes the diagnosis. Rampant (and I mean, rampant) arthritis in my lower spine and left hip. Cysts all over my lower spine (more than likely from the arthritis and joint damage). Well, I’m 24. This doesn’t seem right. I’m too young for wear and tear arthritis. Off for lots and lots of blood work. Waiting…
Ah, here it is. That explains it. Rheumatoid Arthritis (RA).
(If you’re unsure what that is, I urge you to research. It’s highly common and MUCH different than what you normally think of as arthritis).
Rheumatoid Arthritis is, to simplify, an autoimmune disease that slowly attacks your body and your joints.
Well this makes sense!
So here I am today–lots of pain, lots of symptoms, lots of questions, and playing the waiting game to get in to see a rheumatologist in March.
For the purposes of myself (a record of symptoms) and my close friends and family who are curious, from time to time I will use this as a journal of my symptoms, questions, etc.
Symptoms:
-Lower bilateral spine pain
-Left hip pain
-All major joints (knees, hands, ankles, feet, hips, neck, wrists, elbows) feel like they’re on fire or I have icy hot in my veins.
-Pain in both hands
-Weakness/Numbness throughout whole body, legs and arms especially.
-Little to no strength in both hands, right hand is far worse–cannot open bottles, jars, etc. at the moment.
-Brain fog (difficulty remembering anything–sorry!)
-Overall extreme fatigue
One thing I will note–I don’t say any of this to receive pity. I’m an immensely strong woman and I fight to the death for everything in my life. My positivity wavers (especially right now while I wait for treatment), but I can do this. I have the greatest support system a girl could ask for and I cherish that every day. I have the job I’ve always wanted doing exactly what I love. There is so much to be grateful for that it’s literally impossible for RA to take over.
There is a lot I don’t know. There are literally hundreds of questions I have. But I do know this–RA will not define me.
Stay tuned!
Much love,
*K
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