There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope

Take It From Me, It’s Not The End…

I try to remember to breathe in times like these, but that’s easier said than done.

I think the stress of everything I have going on in my life right now is really starting to wear me down.

I just feel like I’m stuck in this horrible cycle that never ends.

It’s a constant fight to keep going…

keep looking for answers…

keep everything afloat…

But I’m just so tired.

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It doesn’t help my symptoms have been out of control


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and that my medical appointments last week weren’t as positive as I had hoped for.

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On Thursday, I had a follow-up with my GI in the morning, followed by a CT Angiography of the Abdomen/Pelvis  ordered by my vascular surgeon to evaluate the extent of the Nutcracker Syndrome.

I have been struggling a lot lately with dealing with the “diagnosis” of  Lupus and all the other potential disorders the doctors were planning to evaluate, as well as having an extreme increase of symptoms, so obviously my emotions are all over the place. I was FINALLY starting to feel good about everything, ready to manage life with multiple, incurable conditions. But of course, everything turned upside-down once again.

My body has been trying to fight me ever since the changes in medications on June 1 when I saw the rheumatologist/immunologist. I figured I was just adjusting, but it just kept getting worse day by day. I’ve had to miss work AGAIN because I haven’t been able to more than 2 feet from a bathroom for more than 15 minutes at a time, which is being generous. Plus I’m getting new patches of hair loss, new and increased amount of skin rashes, nausea, dizziness, episodes of falling over, etc. etc. It’s been a nightmare. I finally call my boss and let her know how awful I am doing and I need to see the doctor to get control of my symptoms before I can even consider coming to work. So I am back out on leave, hoping to get approved for payment this time around, now that I have a diagnosis.

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I schedule with my Primary Care to do the paperwork but wasn’t able to get in until this past Friday (almost two weeks out). So I message the rheumatologist/immunologist and tell her about my increasing symptoms, as well as inquire about the remaining blood tests that were outstanding and were supposed to explain an abnormal test result. She replies that none of these symptoms are typical with the new medications, but I can stop them if I want. There’s no mention of the bloodwork. I figure I would just ask the GI doctor when I did my follow-up appointment since they work in the same practice. (They’re even in the same suite and use the same nurses.) No problem.

My follow-up was set for 7:30 AM Thursday morning, with the CTA scheduled at another hospital at 10 AM (both in Denver, about an hour away). I’m instructed for the test to not have caffeine beforehand, as well as no food or water for four hours beforehand. I didn’t even bother to go to sleep the night before, as my symptoms kept me up all night in pain, and I had to be up at 4 AM to get ready and make the drive anyways. So here I am A) exhausted, B) caffeine deprived, and C) petrified that I won’t be able to make it the full hour in the car with how severe my symptoms have been lately. My anxiety was high, to say the least. I also was unsure how this appointment was going to go, considering my last GI tests came back normal. So I knew as soon as the GI doctor came in to the exam room and started off by asking me, “So what, primarily, are your biggest concerns about your symptoms?”, that this appointment was going to be different than all the others.

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I tell her about my increase in symptoms.

How I spend every moment either in or near a bathroom.

How my skin is erupting everywhere.

The exhaustion I feel.

How my body is destroying my life.

And how frustrating it is to be so sick every single day,

but test after test is normal.

It makes no sense.

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She questions me on my stress, past medications I’ve tried for the IBS, and what elimination diets I have tried. 

I tell her I’m starting to believe that it’s not a problem IN my stomach at all.

Could the Lupus cause problems in my GI tract without showing up in testing?

Or the dysautonomia?

What about that abnormal blood test?

Or the ones that they kept saying they were waiting to come back?

She’s quiet while she looks through the records.

She sees the abnormal test but has no idea what a viper venom test result means.

Everything else came back normal. No one had called me?

Nope. Been almost three weeks.

She mentions that the rheumatologist/immunologist noted in my chart that she DOES NOT suspect ANY autoimmune condition at this time and my new medications were for allergies, including the hydroxychloroquine.

No, that’s is NOT what she told me. My husband chimes in as well.

She thinks it’s odd, considering hydroxychloroquine IS for Lupus, not allergies.

She’s gonna send her a note, something is not right.

No mention of the dysautonomia discussion either.

Why am I still on this med if it’s definitely NOT Lupus?

What is this abnormal blood test?

I need to know! I’m on leave from work AGAIN. This will impact my job.

My primary care doctor noted it. My neurologist noted it. The vascular surgeon noted it.

She says she did receive their reports and thought it was odd they had Lupus noted, but there was no record in their system from the diagnosing doctor.

I’m about to panic…

She decides she wants to run my cortisol levels to see if it’s “stress” or something else and a stool culture to rule out parasites or infections, although my stomach biopsies were all normal. She’ll also order a new PPI to see if that helps. There’s nothing left to check or try at this point. I want to cry, I can’t breathe.

I wanted to tell her, “Don’t give up on me, I can’t LIVE like this.”

But I didn’t.

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Instead I sit in the chair, quiet. I’m at a loss.

How could this be stress?

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These were taken in the office AT that appointment. She watched it happen before her eyes. But there’s no explanation. No reason for the symptoms. 

I try and keep it together while I am in the office. I go upstairs and get my blood drawn… again. The phlebotomist is rough and bruises me. I swear, even my veins are tired. Then we drive to the other hospital for my testing. The ride starts off quiet, but I feel my blood boiling….

How DARE she not put it in my record.

How could she say that I have NO AUTOIMMUNE symptoms? 

Why am I taking this medicine, which COULD be making me sick?

She told me I could quit it if I wanted… but that it was both the best and safest medicine for me.

SHE’s the one who mentioned that it DEFINITELY was AUTOIMMUNE.

And she was the FIRST of two specialists to mention the dysautonomia.

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All my planning. 

All the books I ordered.

The research I’ve done.

The people I’ve told.

Now I don’t have Lupus?!?!?

My husband consoles me. He says she probably didn’t remember, she’s always going in multiple directions.

It was probably a mistake, the GI doc will message her and get it straightened out…

I weep.

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I don’t want to do this test. 

I am tired. I don’t feel good. I’m heartbroken.

I almost vomited in the machine the last time. 

What’s the point?

The vascular surgeon doesn’t believe in Nutcracker Syndrome.

It’s rare and doesn’t make sense.

But I might be that special case…

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decide to do the test anyway.

I’m weak from lack of sleep, illness, and crying. I’m shaking because I don’t want to go through what I did the last time I had a CT. I felt so sick with the contrast on the normal CT Scan, and my face got “burned” and my lymph nodes swelled. At least there wasn’t barium involved this time. 

The hospital is brand new, it’s beautiful. It looks more like a boutique hotel. Or a mall. Some kind of fancy. I tell the radiology technician about my issues last time with the contrast. She’s never heard of ANYONE who had those symptoms. But they’ll watch me closely. And if I have symptoms at home, to call my doctor for help. Ok…

She tells me they push the IV contrast in a CTA MUCH faster than the CT scan, so there’s a possibility it may make me sicker than the last test. Oh dear god. My head is not in the right place for this kind of torture today. I’m panicking. There’s nowhere to vomit in the machine, except all over yourself and the machine. And that machine is not cheap to replace.

I’m having a panic attack,

I don’t want to do this anymore.

I so TIRED of doing this.

And for what?

I don’t WANT to be sick anymore.

I didn’t choose this, this is not what I wanted for my life.

I want to stop spending all of my days in doctor’s office and hospitals.

I don’t want to keep testing, for no answers.

I’m losing my sanity.

I’m losing my faith.

I’m losing my life.

The  technician hands me gauze doused with rubbing alcohol. Tells me to put it under my nose, it helps with the nausea. Surprisingly, it worked. I held as still as I could, despite trembling so hard that I could feel my bones vibrating. Five minutes later, it was over. I’m jumping off the table before she can even take out my catheter. I feel like a giant baby. I feel weak and pathetic for being so anxious about a silly test. Probably test # 100 in the last couple years. (well maybe not THAT many…) I try to act fearless and strong, but I was a coward that day. 

I stumble out of the hospital, feeling faint and having to hold on to my husband to not pass out in the middle of the parking lot. We drive the hour it takes to get home. I get coffee for the drive, but I fall asleep while drinking it. When we arrive home, I climb into bed. I’ve had enough for the day. By the time I wake up, six hours later, my face is  burned red and my lymph nodes are swollen. All the doctor’s offices are closed, so there’s no one to call for assistance. I give up. This is the new normal for me, or so it seems.

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I followed-up with my primary care doctor the next day, the one I had all the issues with months back. I almost didn’t go but knew I had to get paperwork done and had to decide if I should continue treatment or not, as well as see what she recommended as far as work. I tell her about the issues with rheumatology/immunology and how I have no idea if I have lupus. Perhaps I had jumped the gun by announcing it. I guess I was just excited. She, of all people, says she believes my symptoms meet the criteria, even if the bloodwork doesn’t show it. She recommends staying on the medications and says she is keeping it as my diagnosis, at least for now. She says there’s no doubt it’s autoimmune, whether Lupus or not. 

However, she still believes that I have a disease that only I have, that I’m rare in my illness, and I need to be seen by the MAYO or the NIH clinic. (which I’m still not sure is true, but as more tests come back normal, I’m starting to think she may be right.) But at least she still believes me. Talk about finding inspiration from an unlikely source again. It was like when she first became my doctor, always taking me seriously and listening to my theories on my health, which is why I really liked her.

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Maybe I’ll stop searching for a new PCP for now. I have enough on my plate anyway.


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I did  finally have one day of relief this week, with only minor symptoms.

Every other day has been excruciating. 

I’m almost too tired to function.

Definitely can’t be too far from a bathroom, either.

And because my body hates me,

the flood gates decided to open up once again.

My endometrial ablation failed.

Now I’m clotting blood just like I was before having the procedure.

*Sigh* Only me.

Only me.

I’ll call the doctor tomorrow

and wait for the rest of my test results and what the rheumatologist says.

Until then, I’m stuck.

Still waiting, still searching

for any type of certainty

in anything in this life.

But mostly, in finding a diagnosis.

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Life’s a game made for everyone…


I struggled with this post, unsure how I wanted to approach it… but really,  I’m not sure exactly what to feel myself. I’m in a whirlwind of emotions right now. And I’ve started new medications, which are wreaking havoc on my body now as well. It’s like my world has sucked me into a whirlwind and spit me right back out again. And there’s so many questions left up in the air and so many more answers I am still searching for…

But it looks like we have several possible diagnoses


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i·ro·ny1
ˈīrənē/
noun
 
  1. the expression of one’s meaning by using language that normally signifies the opposite, typically for humorous or emphatic effect.
    ““Don’t go overboard with the gratitude,” he rejoined with heavy irony”
    synonyms: sarcasm, causticity, cynicism, mockery, satire,sardonicism

    “that note of irony in her voice”
       
    • a state of affairs or an event that seems deliberately contrary to what one expects and is often amusing as a result.
      plural noun: ironies
      “the irony is that I thought he could help me”
      synonyms: paradox, incongruity,incongruousness

      “the irony of the situation”

My post from May 31  is only more proof that living life with a chronic and undiagnosed illness is both a comedy and tragedy wrapped all in to one. 

Monday, after meeting with my immunologist/rheumatologist, I finally received a partial diagnosis and started on a new treatment plan. Sure enough, they say it’s Lupus, despite what previous blood tests have shown. Not only is it ironic that this comes one day after my post about NOT having Lupus, but May was Lupus Awareness month and I got my diagnosis on June 1. I dunno if it’s coincidence but life is really funny, I tell ya.

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They’ve run some more tests they sent out to a special lab that we are also waiting for further confirmations about the extent of autoimmunity I have. So far, based on general blood tests, the lupus does not seem to be affecting the majority of my organs, which is good news and gives me a lot more options as far as treatment goes. They honestly believe it’s a secondary condition that came out with all the crazy symptoms lately from all the stress on my body for being so sick for so long. We unfortunately have no answers as to what caused the anaphylaxis reactions at this point, but because I had three in a week, she’s put me on an aggressive treatment plan for my allergies to stop it before it gets any worse. Ultimately, without me ever mentioning my own personal thoughts, she drew the conclusion to dysautonomia being the primary source of my illness (which I have said behind closed doors for a long time now). She did get me a referral to neurology for the cognitive effects, which may or may not be Lupus related.

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Luckily, I was able to get in quickly with the neurologist and saw him on Wednesday. Again, of his own conclusions after working at the Cleveland Clinic prior, he says it sounds like P.O.T.S. as primary. He wants me to start Beta Blockers once the Lupus drugs and allergy meds have been adjusted, which makes sense because he wants to know what side-effects I am getting from the anti-malaria drugs before starting anything new. Plus I have already scheduled with the cardiologist, so he’d like to see what a tilt-table test will show before doing any radiology. However, none of the potential diagnoses explains the olfactory hallucinations, so he did order an EEG just to rule out possible seizures. I also have my first appointment with the vascular surgeon next week to discuss what the extent of the Nutcracker Syndrome is playing into all of this. 

Between the side-effects from the 12 medications I am taking daily now and all the stress of continued appointments, work, life…. I dunno how I am supposed to feel. Part of me is happy to FINALLY have progress and a name and something I can tell people… that they have probably heard of. I got my validation.  But then I feel silly and stupid for being happy of having an incurable disease.  Then the other part of me is sad because there isn’t a cure. But it is MANAGEABLE. But then I have so many questions still, and so many things are left up in the air. I feel SO CLOSE, yet SO FAR.  See my dilemma? I guess I need to be a patient-patient, but it’s hard. There’s been so many changes this week with work, school, and doctors that I need to update, but I spent about 6 hours in the bathroom today with side-effects and eventually had to go back to bed. I’m tired and worn, but I have hope.

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 I have so much to say, but no way to say it.  I’m almost numb at this point because it doesn’t seem real. And maybe it’s nothing that they say. Maybe it’s something completely different after the next round of testing comes through. But for now, it has a name.

Lupus.

Autoimmune.

Possible P.O.T.S.

Nutcracker Syndrome

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Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Well life will pass me by if I don’t open up my eyes
Well that’s fine by me

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

[2x]
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

Didn’t know I was lost
I didn’t know I was lost
I didn’t know I was lost
I didn’t know (didn’t know, didn’t know)

Pick it up, Pick it all up, Start all over again…



It finally happened. I didn’t mean to let it out, I just finally broke. I’m not proud of my behavior by any means, but there just comes a point when life beats you down over and over, with big things and little things, until it take one thing to just make everything you’ve worked so hard for to feel like it’s all tumbling down around you. 

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It started with hardly any sleep this week. I was behind in school and trying to catch up before midterms next week. I stayed up too late, too many nights in a row. Still trying to get back into work is exhausting all on its own. I worked on Monday and Tuesday, then therapy on Tuesday, testing at the hospital Wednesday and Thursday, meeting with my lawyer on my appeal Thursday as well (which I attempted to finish on Sunday, but finally gave in when 8 hours later I was in tears and nowhere close to being done), and back to work today, starting the cycle all over again. So much to do, still no time, and still feeling so awful. 

Testing was stressful and uncomfortable, and yet again, I don’t think my tests will show anything, but I can’t confirm that for sure until the doctor reviews all the imaging. Woke up again this morning with a radiation burn across my nose and cheeks. For some reason, after the last four or five tests that involved radiation or nuclear medicine, I wake up the following day with this “rash”. It burns so bad. I can’t put lotion on it, or it becomes greasy and bubbles up some. So I couldn’t wear any makeup to work or to the doctor today. I looked awful, hell I felt awful. But I had to go and do everything I had planned. Second day in a row that someone commented on how awful, sick, and tired I look. Thank you, I’m well aware of how crappy I look today. This is how I feel everyday, I just do my best to hide it to make YOU more comfortable. 

After work, rushed down to try yet another Primary Care Doctor. And yet again, disappointment. The nurse was awful, and while not outright mean or anything, she was not very bright. Couldn’t spell my meds, but again refused to read off my medication and history list. And when she couldn’t find it in the computer system, she admittedly said she wasn’t going to input it to my record. Um, ok. Then the doctor comes in. She doesn’t listen to a word I say, dismisses all my concerns, I have to constantly repeat myself about what doctors and treatment I am currently receiving. I tell her I just want a doctor who can continue my care after my specialists make recommendations or find something with my testing. She looks through a couple pages of my records, tells me it could be depression on multiple occasions. She also tells me I have orthostatic hypertension (which I KNOW, but no doctor will note it), but then proceeds to say that all I need to feel better is to drink more water. The cause of me being sick is that in dehydrated, which is not true at all. All i can do is drink. Also, she has no idea why I would get radiation burns after testing. My lymph nodes are very swollen, but she has no idea why, but she’s certain it can’t possibly be cancer. She wants to run more general blood work, I hand recent copies. So she only wants to run a thyroid check, which they checked at least 15 times in the last five years and all have been normal. My husband came with me, he’s not happy either. She says I should go to a GI doctor… again, I explain I’m currently seeing a GI specialist. She wants me to tell them to run this test or that test. Already had them. She doesn’t listen. She wants to know what my diagnosis is then. I don’t have one, I’m still testing, blah blah blah. She says to schedule in a month or two after I see my GI doc, recommends therapy again, and to come back when I can to run my thyroid test real quick, no appointment necessary. No thanks, I’ll pass. I’ll save you the trouble, it’s normal. She wonder’s why I’m not “skinny” from not eating… Well obviously if I knew, it may explain some of my symptoms, don’t ya think? I’ll just drink more water and take anti-depressants I guess, and then I won’t need you lady. Isn’t that what you said?

So back to square one, AGAIN. I’m frustrated, but this feeling has become oh so normal at this point. I contemplate giving it all up. Whats the point? Even if the specialists find something, I have no one to complete my care as a primary. I go upstairs to study. Hours later and I’m still not done reading the last half of this chapter. The dogs keep barking, because my roommate and husband keep coming in and out, and then their friend’s show up. The house is a mess because I haven’t had time to clean, laundry’s not put away… it’s all building inside, I can feel it. I’ve been feeling it slowly coming up for months now. One by one. Day by day. I lose feeling in my hands, which also has not been addressed or noted in my records. My hand is currently purple from the livedo reticularis. I drop my coffee, all over my brand new textbook, which I need to study from and cost over a hundred dollars as I bought it brand new. It’s all over my notes I just spent hours and weeks working on, and it’s splashed on to my computer, which luckily wasn’t worse. I’m not proud of this, but dropping my coffee was the straw that officially broke the camels back. 

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I work so hard each and every day to maintain normalcy, all while spending all my days off in the hospital or doctor’s office. I sacrifice sleep and rest to barely keep up in school and work. Everything else is left in the wind because I can’t possibly do another thing. I am in pain. I can’t eat. My joints hurt. I lose feeling. I faint. I smell things that aren’t there. My lymph nodes are so swollen they hurt to lay my head down. My hair keeps falling out. My stomach hurts. I always fighting the urge to vomit. My body is sore and tired. I feel like I am going to die. And if no one will help me, then I am pretty sure I will. I’ve never been depressed, I’ve always tried keep going. 

But after all this today, and ruining my book and my notes, I screamed. And then I cried. Hard. So hard, in fact, that I couldn’t breath and hyperventilated. And I threw my book. I just sobbed and sobbed, until I couldn’t stand any longer. Then I cried on the floor. Everyone in the house comes upstairs to see what happened, I probably sounded like I was dying. And here I am crying and yelling on the floor, not my proudest moment. But I felt everything tumbling down, everything I kill myself for each day falling apart. I feel like a failure. I feel like there’s nothing to keep me going anymore. I don’t want to keep pushing. I don’t want this life. It’s not making me stronger. Today it make me feel the lowest I have ever felt. It made me want to quit life. I can’t remember the last time I smiled and it wasn’t fake. I can’t remember a time my mind was at peace, and I wasn’t scared, or worried, or anxious, or sick, or tired. My friend cleaned up my books for me, let me yell and scream and get it all out. Everyone is always telling me to stay positive, don’t be so negative, don’t this, don’t that…. or do this, do that. I’m so alone in this journey in my day to day life. I have tons of people who support my journey, but no one who feels it day to day. Even the ones who do see me everyday don’t truly GET it. And it’s not their fault. It’s not that I want them to feel the pain I feel. It’s just lonely. 

When is it time to give up on searching for a diagnosis?

Maybe I am just crazy?

Maybe it’s not worth it?

But I can’t live like this either!

I’m tired of no one believing me, or ignoring me.

I do one good act every day, trying to get good karma.

Just so maybe someday I’ll have a good day. Or good Luck.

It never works. It’s not fair. 

I pray one good day. One day of relief. Or death.

I can’t be this sad, pathetic, sick.

I can’t keep trying to be a superhero, hiding my weakness.

I don’t want to fail at this life. I can’t afford to fail.

No one wants to hear about this side. It’s not inspirational, and I apologize.

I want to be that girl, maybe I will be soon again.

But tonight, I’m broken.

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