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.
It doesn’t help my symptoms have been out of control
and that my medical appointments last week weren’t as positive as I had hoped for.
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.
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.
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.
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.
Instead I sit in the chair, quiet. I’m at a loss.
How could this be stress?
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.
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 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…
I 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.
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.
Maybe I’ll stop searching for a new PCP for now. I have enough on my plate anyway.
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.
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.