I shot for the sky, I’m stuck on the ground…

The sadness always follows a hard blow.

I know these feelings won’t last forever,

but it feels like it’s never going to get better. 

I feel like I am never going to get better.

It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.

Yes, I said it.

I am in fact JEALOUS of other people who are sick

and having surgery.

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Am I absolutely crazy or what? 

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I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.

I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?

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I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.

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All I  want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?

Must just be in my head then, right?

I’ve tried to take my mind off my sadness by attempting  the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.

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I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.

I’m sorry for the depressing post, but I just needed to get this all out of my head.

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Living with a chronic illness isn’t always about the fight to be strong.

Or motivating others.

Sometimes the hardest part of the fight is just getting through the dark times.

The times you’re in so much pain it hurts to breathe or even cry. 

Luckily, these feelings don’t last forever…

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“Hang on, when the water is rising

Hang on, when the waves are crashing

Hang on, just don’t ever let go…” (Plumb)

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9 thoughts on “I shot for the sky, I’m stuck on the ground…

  1. ellennicole7 says:

    I love that you ended this with a bit of hope… Thank you for sharing! I think all of us in pain are a bit envious of those who seem to be getting better or at least have doctors listening to them. I hope that your next appointment will give you some answers to potential treatments.

    Liked by 1 person

  2. shubhamdkrishan says:

    I probably have no idea what you are going through. But somewhere it really saddens me.. that inspite of so much advancement in the field of medicine, nobody is able to figure out what is wrong. I have read most of your articles, and have been regularly noting down your symptoms and stuff. I really want you to come out of this healthy again. I have a strong feeling somewhere, that this might be auto-immune. Most of the symptoms match. Have you undergone any test that confirms it is not auto-immune?

    Liked by 1 person

      • shubhamdkrishan says:

        Have you undergone ANA tests? they confirm auto-immune if found positive. I have been studying your symptoms for over a week now. Though I am a very immature customer as far as medicine is concerned. But what I can make out is this disease is escaping tests. And mostly auto-immunity is one of those very few diseases which are clearly seen in the blood tests. Seriously, is there just no clue in the blood tests? Any small clue. Anything. Your ANA can’t be negative. There should be some elevation.

        Liked by 1 person

    • Undiagnosed Warrior says:

      They have so far ran multiple tests ANA, B12, cardiolipin, CBC, C-reactive protein, ESR, eGFR, and Metabolic panels. They have also run Vitamin D, TSH, TSH rd and 4th gen, SSB, SSA, Rhuematoid factor, liver panel, lipid panel, Lipase, Iron binding capacity, IGE, IGM, IGA, IGG, CK, C3, IGE-Rab (chronic urticaria), Growth hormone, cortisol, B12 and folate, b.burgorferi screening, beta 2, sjorgens SSA, and amylase.

      The only abnormal results (which vary by testng date- sometimes they are, sometimes they are not) has been low cortisol, High IGE, Low glucose, Low amylase, Low Vitamin D, low calcium, high white blood cells (only on a few occasions), Low CO2, low HDL, High hematocrit, High MCV, and a positive viper-venom blood test. I also had positive ketones, high urobilinogen, and borderline high specific gravity in two urine samples, mostly due to starvation at the time.

      They did a scalp biopsy on my “alopecia spot”, which showed “focally marked psoriasiform acanthosis with diffuse parakeratosis. In some areas, the granular cell layer is exaggerated. There is a predominantly perivascular lymphocytic infiltrate in the superficial dermis Eosinophils are not numerous, but easily identified”.

      Every other abnormal finding was found in radiology and cardiology testing.

      Liked by 1 person

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