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Positively Rachel by Positivelyrachel - 2d ago

People often use the expression, “when life gives you lemons” when things aren’t going quite right, you’re likely familiar with the phrase? Well, humor me as I explain why I’d like to adapt the statement to, “when life gives you limes.”

In my opinion, lemons are tasty and you can do so much with them, many options being super simple! For example, of course you can make lemonade, then there is lemon cake, lemon bread, lemon cookies, pie, and more! I mean lemons are great for tea, detoxing, or simply put in your water. Lemons are just so handy, but limes? Limes are a little bit more complicated, they’re slightly more sour and although you can use them in drinks and recipes, it’s not quite as common, kind of like chronic illnesses – complex and uncommon.

That said, I have quite a few limes in my life. I’ve been diagnosed with over 10 chronic illnesses, a handful of which are seriously debilitating and progressive. I’ve had to take medical leave from the school of my dreams, now having watched my classmates graduate without me, and put my future goals on hold. Because of my symptoms– mostly nausea, pain, and fatigue– most days I am not even able to leave home and I spend majority of my time in my bed resting and sleeping.

I have new limes thrown at me every time a doctor gives me a new diagnosis, every time a treatment doesn’t work, and every time I wake up feeling worse than I did the day before. However, I’ve learned to take these limes and use them to help me find all of the gifts in life, all of the things that I am so thankful for. When you’re given challenges, sour moments, it really teaches you to be so much more thankful for every little moment or object that makes you feel joy.

Some of the sweet things in my life that regularly help me get through the sour moments include my dogs, Baxter & Dexter, my family, good music, and my online support network. There are also little gifts day to day like a 75 degree day, a special visitor or getting something in the mail, being able to take a walk, an Epsom salt bath, taking a drive and seeing pretty scenery, etc. Lots of small things bring me joy, and I am so appreciative of every happy moment I am given.

I’ve had a lot of curveball limes recently, broken tubes, line infections, flare ups of pain and nausea, exhaustion, and doctor troubles to name a few, but I’ve learned to put up walls that keep all of this from affecting me too much, only allowing through the smallest amounts of stress or worry possible – the last thing I need on top of my illness happenings? Extra limes.

Learning to filter out some of the extra stressors, even the smallest things you may hardly notice can make a big difference in the long run. Hold on to every happy moment, every simple pleasure, and let go of negative energy; hold no grudges, and never go to bed or leave your loved ones angry. Forgive, love, laugh, and remember not to waste precious time on trivial issues. When life gives you limes, take a moment to find your own sweet moments and happy thoughts, play your favorite song or cuddle with your dog, text your best friend or your mom, take time to express yourself, share your love and gratitude, spread the joy in random acts of kindness, random words of affection. Life is too short to be sour.

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I’ve always been a bit of an introvert, my parents often tell me that when I was young, my teachers said I hardly spoke a word, I was polite and hardworking, but quiet as a mouse, which my parents thought was odd since I often talked a lot at home J I’m shy and often have trouble making friends, I have always hated confrontation or having people be upset with me. I worry about running late or being in the wrong place at the wrong time… I’ve got a lot of thoughts and opinions and knowledge, but being introverted and having trouble sticking up for myself in tense or questionable situations, it can be a major downfall when you’re living like I do.

Getting sick at such a young age with conditions that so many doctors don’t even know about let alone know how to treat. Since I was young and still living at home, my parents were always with me at doctors appointments – still are today J — and they were able to help me express things fully and ask all of the questions I needed to, ask for help with whatever needed more attention, but I still often got overwhelmed.

Being sick so long I’ve begun running my doctors into retirement, and of course with that comes the need to begin the draining search for new doctors, a task that brings difficulties in many ways. You’d think that after almost 8 years I would be able to do this on my own, to handle doctors and keep focused and calm and get everything out of it that I need, but that’s just not the case. You never know what you’re walking into with new doctors; each has their own protocols for testing and treatments, they believe in different approaches, and you have to explain your history in detail, which gets longer each time.

There are so many biases against girls like me with “invisible illnesses” simply because of my age, gender, and appearance, and the worst part is that those biases and judgments don’t just come from stupid high school kids or young adults, they come from doctors, from insurance, from pharmacies, from all of those who are supposed to be the ones making my life, making my body at least feel a bit more comfortable, a bit more active, a bit more NORMAL.

After a few bad experiences with doctors and nurses and hospitalists, some being members of my own care team, the medical professionals who hold my life in their hands, and that kind of brutal betrayal can lead patients like myself to extreme anxieties and even medical PTSD, which makes finding new doctors a terrible thought, a stressful time for me, and on top of that, I have to be brave enough to get through these appointments feeling like I’m in good hands.

Doctors are supposed to “do no harm,” but that concept is flawed and misinterpreted sometimes; “do no harm” isn’t a pledge meant just to protect us from doctors intentionally causing harm, doing things to make us sick or cause us pain, etc., it means do all you can to help your patients no matter who they are and what they have. There’s so much that happens behind the scenes of the medical system, doctors with prejudices who feel they have a right to be rude and judgmental and negligent when we know something is going on and we are asking for help. Negligence is a crime just as serious as purposeful, physical harm.

Why do you get to decide what I’m feeling, what the symptoms or side effects can or cannot be based on a decade old case study instead of putting trust into the patients, the ones living this, the ones suffering every day while the professionals get to wash their hands and go home without another thought of how their actions or lack there of are affecting us. I may not be a medical professional, but I am definitely a chronic illness expert, and if doctors could truly understand that, we could work together, creating trust and mutual respect.

A wise woman once told me that I need to remember that doctors work for patients. I think doctors forget that and take advantage of their position and their capabilities, the things that only they can do or get their hands on. We need doctors, we need the resources they can give us, but they need us, too, and they need to keep in mind that those of us with chronic illnesses aren’t your average patient, and we know our stuff.  No one knows chronic illnesses better than the patients themselves.

Since there are no options for spoonies to join the medical field based on our personal knowledge and research, it would be incredibly beneficial if our doctors and insurance agencies and dieticians, pharmacists, etc. would take us seriously and use our advice, consult with us more so than just making the decision and saying that’s that.

We do so much of the work, so much of the research, and all of the first hand experience, yet we still rely on the “professionals” who are making these decisions without listening to the answers we are offering.

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Positively Rachel by Positivelyrachel - 3w ago

I hit obstacle after obstacle this week, every day having a new curveball, each more stressful than the last, and each having something to do with my health or the medical system.

I’ve worked tirelessly playing middleman between pharmacist and doctor, nurse and doctor, nurse and pharmacist, new pharmacist and informed pharmacist, and the ignorance from those who are trained professionals yet uninformed and unable to help –   things that  should not occur together – those of us battling chronic illnesses or the illnesses themselves.

This life is incredibly hard, so complex and misunderstood. I often feel like I’m lost in a crowd, invisible to the world, a case number, a file in a folder on a computer, maybe not even a hard copy, these days who knows? However,, to survive, to keep myself going, I have to try to find joy in each day and as many simple pleasures as possible, because we never know what tomorrow will bring.

Yesterday I found out that a friend, a spoonie sister, a newbie tubie volunteer, passed away unexpectedly. This news just shocked me, I’m at a loss for words, for thoughts, I’m not sure it’s even hit me fully.

Though I never met Tara in person, we talked often both online and via text, &  the bond between all of our spoonie sisters is something I don’t think anyone else can understand. Tara was a bright and enthusiastic part of the online spoonie community. She was always peppy and smiling, she shared her experiences with others to help them know what was coming their way, and she was never afraid to speak her mind.

It’s terrifying and shocking every time we lose a sister, it’s heartbreaking losing her, and it is scary for each of us, a “it could have been any of us, it could have been me,” moment. It never gets easier, it’s a daunting feeling, it’s impossible to put into words what it is like living with fears like this every day when you’re barely even an adult . We’ve lost some girls who were 16 years old, so imagine being in high school and worrying about dying unexpectedly, not waking up, wondering what your family will do, how will they cope?

I know this may sound morbid, but this is the reality that so many of us live in, and this isn’t the worst of it, but if you are reading, you must want to know about chronic illnesses or about me, and this is part of that. I can’t be 100% positive, it’s not possible, so I’m sharing some of my raw truth with you.

No one should live in fear, life is unpredictable for everyone, not just chronic illness patients. Accidents happen, illness happens, there are so many risks in life, and even if you don’t take any, you still never know what tomorrow will looks like.

Instead of letting this terrible week or fears of the future hold me back, I am going to do my best to push through and continue to find joy and fun wherever and whenever I can – I know Tara would want that for all of us, she loved having fun, loved adventuring.

So I’m going to continue on with my goals of embracing each moment, loving and appreciating loved ones and never holding onto grudges or judgment, never leaving on a bad note.

Stay tuned to hear more about my upcoming risk-taking adventures.

xoxo

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Positively Rachel by Positivelyrachel - 2M ago

In the past few months I’ve seen increased frequency and severity in my symptoms and even new symptoms coming to light. When I have flare ups or new issues I often become more aware of my current physical state, and ironically, while doing so, I usually think I’m better off until these harsh realizations, moments of brutality that shine a light on the fact that no, I’m not better, I’m actually worse, but I’ve just gotten used to being sick, used to this flare up that just never left, that became my new “normal.”

Though I’m used to high levels of pain, severe nausea, frequent migraines, fatigue, etc. when I wake up and have new symptoms or symptoms I’ve had before all of a sudden “amplified,” it can be super frustrating, discouraging – not to mention painful. But when these “flare ups” come about and decide to stick around for more than a day or two, the mind starts to wonder….

Is this a flare? Are these symptoms going to go back to “normal?” Is there something more serious going on?

Pain is a hard thing to talk about and understand because everyone has a different relationship with pain, everyone’s “scale” is their own – my 6 could be your 9 for example – and you can’t really know what anyone else’s is unless you’re living it. My pain has been a totally new phenomenon the last couple weeks, my body is searing, my head is killing me, it’s just relentless. This pain is different from my “normal” pain, though, so it’s kind of hard to compare them severity wise, it’s hard to simplify it to a word like “throbbing, stabbing, burning, etc.” or a number 1-10 – I’m in severe pain and discomfort all over my body and it won’t give me a break — I wish that were enough to figure out a way to help, right?

“What concerns me the most is the unknown….it is just too overwhelming to think about…”

When my symptoms cause me to be even more “disabled” than normal, when I can’t get up or out of the house for a week or more, I’m hardly able to be around others because of the pain and stimulation, and I’m sleeping excessively or unable to sleep at all, it can be hard to find motivation, hard to force yourself to get up and get going, doing something as simple as shower or change into fresh pjs…

“No one really explained to me the depth or the magnitude of that diagnosis, no one explained how serious and life changing this chronic illness can be….”

There are so many unknowns with chronic illnesses, and most of us learn all about that through personal experiences, not from doctors or even google doctor! Living with conditions that even doctors don’t know enough about can be scary, all of a sudden everything you know is just swept out from underneath you, you’re left with so little understanding and no control over your own body, your own life. This is all shocking, it’s devastating, and you have got to find a way to embrace it, conquer it, and grow right along side it, otherwise, it will break you through and through, not only physically, but mentally and emotionally, mind, body, and soul.

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