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Undiagnosed and having a rough few days

Not unlike others with undiagnosed chronic illness, I'm feeling a bit piled upon. Every day has its challenges simply by existing. I HURT. Everywhere. Being in pain that you just can't relieve is exhausting, even when you aren't also fatigued. And since I look healthy and am a relatively upbeat person, people don't get it and can't understand when its finally too much and you just fall apart emotionally. I know many of you can relate because I read these same things all the time.

I'm not so patiently awaiting the results of a whole genome sequencing, a visit with a rheumatologist, and a neurologist. So far, the big contenders are hypophosphatasia, hEDS, and MS. Those all have differential diagnoses to weed through, but I just want to know what is making me have so many struggles so I can come to grips with things and find ways to cope so I can more fully enjoy my life. #Undiagnosed #Hypophosphatasia #MultipleSclerosis #EhlersDanlos #HEDS #ChronicPain #Fatigue #ADHD #RareDisease #Waiting

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Waiting to hear back about a FT position I interviewed for this week, and I am SO. ANXIOUS. Playing the waiting game is never fun! It’s also exhausting. 😩 #Anxiety #Waiting

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Being undiagnosed is Schrödinger's diagnosis

I'm a physics student at the University of Cambridge and I am living with an undiagnosed illness (which I call Pete).

For those not familiar with Schrodinger's cat, its a thought experiment used in understanding quantum mechanics. If you have a box with a cat in it and release a poison into the box that has a 50% chance of killing the cat and no way of knowing if the cat is dead without opening the box and checking then as long as the box is closed the cat is in a superposition of states where it is both dead and alive.

Being undiagnosed is Schrödinger's diagnosis because it is both

Curable and incurable Cancer and bengin Something serious and not Treatable and untreatable Progressive and constant That scary thing you read about and something much less sinister because you don't know which until someone actually takes the time to investigate properly and diagnose you. It's scary and it's lonely.

#ChronicIllness #chronicallyill #physicist #Undiagnosed #fightingforanswers #fightingforadiagnosis #Gaslighting #Uncertainty #Waiting

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Psychiatrist no-show #frustrated #Waiting

I waited eight months for a referral appointment with this psychiatrist. I took the morning off work today and stared at my phone for an hour while I waited for his call. Nothing.
I called his office and left a message. Nothing.
What am I supposed to do? I am so tired of trying to get medical help with my depression, anxiety, and ptsd symptoms. I am just so tired.
I called in sick to work and I'm just staying at home and letting the tears fall. I guess I'll count that as my win today - putting my needs ahead of what is happening at work.

#CheckInWithMe #Depression #Anxiety #PTSD #MentalHealth #Psychiatrist #Medication #tired


In medical limbo

Had an EEG last Thursday. Reason is falls & other symptoms. I know the results can help diagnose dementia , brain tumors & dementia along with other things. My brother died from a brain tumor last month, seizures would mean no driving & loss of independence. Dementia is the most terrifying. I will stockpile meds if I have this. I’ve seen it play out, not for me
#Waiting anxiously



Hey, I'm new here. I'm technically not medically diagnosed with Lupus yet, but I'm fairly certain its what has been ailing me. My ANA test was positive and my Dual Strand DNA test was indeterminate so my Dr. is retesting me in November. I'm really struggling with simultaneously coping and trying to get my Dr. to believe that something is wrong with me. It makes me frustrated when I'm in pain or feel so exhausted that even just speaking is painful. I thought that at least with the positive ANA test she would start to come around, but that hasn't really been the case. Hoping for proper test results and a diagnosis later this year. It just makes me nervous that if I'm not tested during a flare they will be negative and she will say nothing is wrong with me.
#ChronicIllness #Diagnosis #Waiting #Lupus #ChronicPain

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I seriously need a new doctor

I was waiting all morning for my 11 am phone call appointment with my doctor. Couldn't do anything while waiting. As soon as I heard his voice on the call, I started tearing up, sweating, and hyperventilating.

Any tips for what to do while waiting for a new doctor in my area to start accepting new patients? Or dealing with a male doctor when you feel unsafe with male authority figures?

#Doctor #Medication #Waiting #AnxietyAttack #Anxiety #Depression #Trauma #CPTSD

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The Wait is Heavy.

One of the heaviest loads we carry as parents comes in the waiting. It truly does seem like we spend a good deal of our time waiting. Some waits are harder than others.

We may be waiting for pregnancy results, waiting for our baby to arrive, waiting for teething, waiting for sitting up, waiting for the next big milestone.

There are many things in life we wait for; some expectantly, some happily, some impatiently, some fearfully.

I have spent a great deal of parenthood waiting. The most difficult waits have been when waiting for test results.

I specifically remember when my daughter was born. Down syndrome was suspected. We had to wait two weeks for a blood test confirmation…two weeks that felt like a lifetime. When we went to the doctor and she told me the results, she just grabbed me and hugged me. I will never forget it. Never.

Waiting for a diagnosis, then waiting for this doctor and that doctor, this surgery and that surgery, this health issue and that health issue. It was all new and it was all terrifying.

Waiting teaches us things that we are typically too stubborn to learn otherwise. It teaches us patience (begrudgingly). It teaches us to lean on our faith. It teaches us to understand the importance of every small moment.

Living inside your head while waiting is not always a happy place to be. Waiting is hard. It can be heavy. It can be lonely.

I believe waiting teaches us so much. It doesn’t teach us the easy things, but it teaches us still.

It is so important to find people who are with you. Find people who will hold you in the waiting, people who will carry you in prayer, people who will listen without judgment, people who will drop everything and run to your side when you need them. It is important to know that you are loved and supported and heard. If you feel no one understands you, reach out to find someone who you can relate to.

The wait is heavy. Please don’t carry it alone.

#DownSyndrome #Waiting #TheLuckyFew

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#Waiting I'm 55 year old male I have had severe anxiety and depression since a teenager plus PTSD since 2010
I have attempted in 2020 since then I've been waiting for everything to go wrong and push me over the edge I wonder if this is the day every day

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When You Lose Time to Chronic Illness

As I’m writing this, it is the end of Memorial Day weekend. The advertisements are in full swing, and the fact that I just graduated from high school has hit me like a truck.

I’ve been sick with Idiopathic Intracranial Hypertension since March. Since March, I’ve been stuck. Stuck in bed, stuck out of school, stuck out of work. I was diagnosed two days after my eighteenth birthday, and being a legal adult still feels like a foreign concept. (The only part of being eighteen I’ve accepted is going to an adult hospital now.)

All of my friends are throwing graduation parties, and I’ve been doing my best to show up, at least for a little while. Oftentimes, the conversation will turn to summer plans and beyond. My response is almost second nature: “Well it’ll depend on where I am.” Or maybe: “We’ll have to wait and see.”

There’s a lot of waiting that comes with chronic illness. Waiting for appointments. Waiting for tests. For medications to work. For insurance to cover this or that. I’m working to accept that waiting comes with the territory. And if it means I need to wait for the next stage of my life, well, I can work to accept that too. Maybe. 😉

#IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #RareDisease #chronicallyill #chronicallyillteen #ChronicIllness #CheerMeOn #CheckInWithMe #Waiting #HighSchool #College #Student