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April 30th, 2024 Review + Thoughts

A bit anxious as my day was very stressful because I had to take care of things medically related which exhausted me.

Advocating for my health is always a bit hard for me which is to be expected for my age I believe while I try and figure out what is wrong with me and who I need to see.

Which unfortunately is a difficult task.

Having to make appointments for multiple doctors and having to go and see new ones for a list of health issues and symptoms that never gets answered because there is nothing they can visibly see which is another pain of having an invisible illness.

Symptoms that don’t make sense to most doctors so I have to go to different doctors for them to also not know what is going on.

And then I wait a month only to have to wait for another more.

And then I have to get bloodwork done and/or imaging via x-ray or ultrasound.

Particularly with my kidney problem where I have too much calcium but with perfectly functioning kidneys that actually work better than most.

And I find it very depressing and overwhelming.

I can’t do anything fun because all the money goes to the doctor.

But then again I probably wouldn’t have had fun anyway due to the pain and chronic illness.

I’m not sure, this all just feels hopeless and a lost cause.

#MentalHealth #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #ChronicIllness #ChronicPain #CrohnsDisease #InflammatoryBowelDiseaseIBD #Undiagnosed

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Undiagnosed Disease Day

Today is Undiagnosed Disease Day, and I want to acknowledge the journey so many of us are on to get a diagnosis and treatment for the conditions that bring us here!

Fourteen years ago, I suffered a sudden onset of chronic symptoms and visited doctor after doctor. Preliminary tests showed that I was “a perfectly healthy young woman” and I began to wonder--not about the limits of diagnostic medicine, I first wondered about myself.

Was I imagining my ailments? My debilitating fatigue, dizziness, and joint pain certainly felt real. Maybe I was making too much of my issues? But like a lot of people, I was raised to push through pain, fatigue, and sickness, and I’d never before let minor illnesses stand in my way. However, now I couldn’t even keep up with my reduced work schedule.

At the same time, I searched for diagnoses on my own. I scoured everything from patient forums to journal articles trying to figure out what was wrong and how to get better. Because many of my symptoms mirrored multiple sclerosis, I went through yet another round of expensive tests. Twice. When the neurologist gave me the results—no MS—I burst into tears. I’ll never forget the dismayed look on her face when she told me that most people would have the opposite reaction.

The thing so many people don’t understand is that a diagnosis, sometimes even a life-altering one, can come as a relief to patients who have been suffering from unexplained symptoms. It’s surprisingly common to have a poorly understood or undiagnosed illness. According to the Mayo Clinic, as many as 1 out of 13 people in the United States suffer from such conditions. A disease doesn’t need to have a name to derail your life. In fact, undiagnosed illnesses can take an even greater toll because these patients are dealing with the unknown, alongside doubt from doctors, employers, friends, and family.#

It’s never fun to be sick, but it’s a particular challenge to be sick and not know what’s wrong. The physical fallout is only exacerbated by self-doubt, outside skepticism, and the inability to actually heal by treating the root cause.

So on April 29, Undiagnosed Day, let’s give a shout-ou to everyone who continues looking for answers when others look away.

#Undiagnosed #ChronicIllness #Anxiety #MentalHealth

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Dealing with Mystery Minor Chronic Illness #ChronicFatigue #MentalHealth #ChronicIllness #Undiagnosed

October of 2016 was the beginning of a new normal for me, far before COVID-19 had started. It was a time of grief, sorrow, and bargaining. It was when I had obtained my mystery minor chronic illness. Mystery because I’ve had my tests done, and they all came out 100% fine. Minor because I am still able to carry out my day-to-day activities. And chronic because from one point forward, I had to deal with loss of energy and concentration for everyday of my life.

Countless times have I been told that nothing was wrong with me, and all of these are mere signs of anxiety. However, my change in physical appearance and internal sensation tells me otherwise. Drastically, I had become paler, weaker, and more tiresome. It was clear to me that something had changed. What it was - I was not certain for sure.

Dealing with mysteries can be unsettling because there is no definite answer. Not even science - the discipline which purports to know a lot of things - could tell me what I was facing. This had forced me to fight and cope using my own means. And for eight years, I have built a set of coping tips that I would like to share about today.

1. Gratitude

I keep a gratitude journal where I list things I am grateful for each day. This helps me focus on the positives despite the sea of negative feelings. In it, I list down all my blessings, however minor. It helps me realize I have a lot to be thankful for.

2. Exercise

With chronic fatigue, it may seem counterintuitive to exercise, but exercise helps release endorphins and maintains good chemical balance in the brain. Even simple walking can help lighten one’s mood, so I highly recommend this.

3. Friendships

Keeping close friends helps distract me from wallowing, as I shift my focus on others instead of just myself all the time. They also help me lower my feelings of anxiety whenever I rant to them. Just be careful not to rant too much because that will just bring the mood down.

4. Reframing

Self-blame is common with chronic illness, but we must realize that some things are beyond our control. Reframing thoughts can help shift our focus on things we can still do rather than things we cannot do.

5. Rest

After a day or some hours or some minutes of hard work, it can be rewarding to get some rest. Rest is the universal reset, which not only resets my energy levels, but also resets my mood.

6. Hobbies

Having hobbies are a great form of satisfaction because you can achieve small things during your free time, whether it is a new stuff toy you sewed or a new song you learned to play.

7. Moving Forward

My motto is “Keep moving forward.” This means that we mustn’t keep feelings of regret or other negativity from past experiences. Moving forward means that we forget about small things, and focus on things that build us and make us better people.

With all these tips, dealing with chronic illness has become easier and more manageable for me. It is never easy, but baby steps such as those listed above help me get through my day, week, month and year. I hope that even as cliche as all my tips sound, it can help reinforce the idea that these tips do work. I assure you that as long as you keep following these tips, and your own coping strategies, you are on track to be a much better self. A lot of times it is hard, but the silver lining is that we emerge stronger, braver, and more empathetic in the end.

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What’s your experience with functional medicine?

As defined by the Institute for Functional Medicine, this approach to health is based in systems biology and focuses on identifying and addressing the root cause of disease — from inflammation to vitamin deficiencies. It takes into account one’s genes, environment, and lifestyle (including stress management, nutrition, and movement), but it also blends conventional medicine with more “traditional” or complementary practices and approaches.

In the most simplistic terms, functional medicine treats a patient as a whole person as opposed to dissecting one’s health organ by organ, symptom by symptom.

I’m about to see a functional medicine doctor for the first time after my rheumatologist “dismissed” me from her care after diagnosing me with lupus less than a year ago. (To be clear: I absolutely love her, but her hands are a bit “tied” when it comes to insurance approving the next tier of meds, and I have a dangerous history of medication side effects.)

And like many of you in this community, I’ve had a lot of triggering experiences across the spectrum of holistic practitioners (I once saw someone who wanted me to stop all of my medications cold turkey with absolutely no tapering plan). One of the biggest cons to seeing a functional medicine provider is cost, as it’s entirely out-of-pocket and not covered by my insurance. On the other hand, they’ve been incredibly thorough, validating, kind, and responsive. I still can’t get over the fact that when I call their office, they always answer and help me immediately. (No voicemail? No repeated attempts to communicate via the patient portal?) I’m cautiously hopeful that they’ll help me move in a better direction — I don’t have a ton to lose at this point.

I’d love to hear any tips, advice, or general experiences with functional medicine. What have you tried? What’s worked? What happened?

🤓 P.S. I have found this website to be super helpful when doing my research: www.ifm.org

#Spoonie #Lupus #Migraine #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #AutoimmuneDisease #Undiagnosed #Caregiving #Cancer

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Diagnosis

As some of you know, I have really been struggling with my hands lately. I have cerebral palsy and have had chronic hip pain for the last 7 years.

My rheumatologist thought I had fibromyalgia, but I don’t. My rheumatologist worries that I might develop scleroderma. My ANA is extremely high, but I do not have rheumatoid arthritis. I have progressively been losing function in my hands and my knuckles turn purple at times. (The high ANA and pain in my hands are not related to cerebral palsy.) My rheumatologist said this could be consistent with arthritis.

It hurts to write, type, and do many other things. The hip pain was bad, but my mentality has gotten worse as my hands have lost functionality.

Has anyone else experienced anything like this? At times I want a diagnosis so this pain could be treated.

#Undiagnosed #CerebralPalsy #ChronicPain #Arthritis

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Reminder

Just a reminder to my fellow disabled , chronically ill and or mentally ill folks that you are no lazy. Not lazy at all. You are putting in every piece of what you have into surviving in a world that is not made for you in a body that is just trying to keep you alive somehow. The actual people who are lazy are the ones who are too lazy to educate themselves about disability and chronic illnesses. You are not at fault. Not one bit. The people who are telling you you're lazy are the lazy ones themselves. You are not lazy. Not one bit. And you are allowed to feel grief and cry and complain about your life even if there's people who have it worse.
#Depression #Fibromyalgia #ChronicIllness #ChronicPain #ObsessiveCompulsiveDisorder #MentalHealth #Undiagnosed #ChronicFatigueSyndrome

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What do you often research about your health?

One thing I learned early on in my health journey is that most appointments with health care professionals only scratch the surface of everything patients or caregivers should know.

Sure, appointments may cover a rundown of symptoms or results from scans or bloodwork; but they don’t delve into the intersection of other diseases, strong suggestions for lifestyle changes, or ways to better navigate family dynamics.

What do you often search for or research when it comes to your health?

#MentalHealth #ChronicIllness #Disability #Cancer #RareDisease #Autism #Parenting #Caregiving #CheckInWithMe #Undiagnosed

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