“So I Was Not Lost or Found…”

A Casual Update from Yours Truly

I know it’s been a while, but I’ve been barely keeping up with everything going on.

I honestly have not had the time to be sick…

And by not having time to be sick…

What I  really mean is…

I’m symptomatic, in pain, and have no choice but to ignore it.

I’m in survival mode now.

But I am truly grateful for being able to take breaks, read your stories,

and knowing I am not alone in my struggle.

Back to Work Update:

I’m lucky to be employed at one of the best companies in the country. And no, I’m not being sarcastic either. Literally, they make it in the top half of Fortune Magazine’s Top 100 Employers to Work For every year. That’s pretty impressive. They’ve also been doing their best to help me adjust back slowly to work, splitting my breaks into two to break up my day more, and allowing me extra time if I need it due to my symptoms. They also gave me two days to catch up on emails, changes in protocols (as we’re constantly updating or trying new things), and to get back into the swing of things. Today was my first day back on the phones. I have to admit that I am a little rusty, but it didn’t take me long to get back into the swing of things. After doing some training with a co-worker today, who’s been with the company longer than me, I realize I’m doing well, considering. My customer service skills are still in tact thankfully, and even on the worst of my calls today, I was able to turn it around. I even got a referral today, which has been my biggest struggle since starting with the company.

The hardest part about going back to work, even part-time, is still trying to balance my health and everything else in my life. Today I had a tough time remember things, especially particular words and phrases  needed to search for the guidelines that I NEEDED for a client. Luckily, a friend stopped by my desk to say HI at the perfect time, so she politely gave me a reminder. Two words. Simple. Common and everyday verbiage I use every single day and should be ingrained in my mind. But nope, it was gone. Just another side effect that continually gets worse. Also, sleep has been minimal to say the least, but that has mostly been a result of my symptoms. I’m trying to eat one meal a day to keep my energy levels up, which is a challenge considering how awful I feel every time I eat, and has made every night this week a sleepless one. I’ve been waiting to eat until dinner time, in hopes that it will not make the abdominal pain and nausea worse during working hours. I can’t miss any more days at this point.Due to my short-term disability being denied, it was required that I take a warning for my absence, although the leave was approved ahead of time (as no one expected me to get denied based on my symptoms and all the testing I was going through). I’m still working on the appeal and hopefully will recover the loss in income, as well as get the warning off of my record. So needless to say, there is a lot of pressure to get the appeal completed and as perfect as possible. Most people hire a lawyer to handle this type of claim appeal, but unfortunately that’s not an option for me at this time. It’s just a lot of stress and such a complicated process, but I am hoping I can have it done by the end of the weekend.

Other than that, I’m still trying struggling to make long-term decisions about my employment. Do I want to permanently go on part-time? I have until next Friday to decide. I’d have to commit to part-time for at least a year, and while most people would be grateful for a Monday-Friday schedule, the only hours offered are from 2-6 P.M. and with no other days off during the week, it makes testing and driving a couple of hours for certain Specialists impossible. My current schedule is 10 hour days, four days a week (when I’m not transitioning at work), but my schedule will change in July to 8 hour days, with Sunday and Wednesdays off. Luckily it’s an early shift, but will be rough trying to get everything done as well. And with my warning on file, I can’t miss any more days that aren’t scheduled and approved ahead of time. Now, I worry even more about the future and maintaining my job, especially not having an official diagnosis, and I don’t know what the best option is at this point. 3c8d93a6b8c281b8f411f6ba227f6a7bMaking plans about anything with a chronic illness is hard enough, but especially when it comes to your employment  and financial future – not being able to reach your goals and dreams, buying a house someday, not living paycheck to paycheck, saving the necessary emergency fund, or the uncertainty of not knowing what is wrong with you. What if there is no treatment? What if they never figure it out and it keeps getting worse? What will I do then? What if I do lose my amazing job? How will I survive? Who will hire me now that my symptoms have gotten worse with lack of treatment?  For me, this is the hardest and most frustrating part of being sick. I’m petrified of making a mistake or choosing the wrong path. I’ve exceedingly become more and more indecisive when making decisions and I hate it.

New Semester, New Class:

Luckily, statistics is finally over. I ended the class with a B, which killed me because I tried way to hard and put way too much time into this class. The average in the class was in the 50’s, which means the majority of the class failed. I was hoping he would curve grades, and my final GPA was 89.3%, so I had really had my hopes up for an A. Oh, well. It’s done and over, I never have to take it again. I’m in applied psychology this semester, which started the day after the last semester ended. The last class burned me out, so it’s hard to get motivated so quickly with no time to recover in between. But at least it is more interesting, although it involves reading two books, two writing assignments, and a quiz every week, not to mention a research paper, and a midterm & final exam throughout the course… All in 8 weeks. I’m tired just thinking about it. *sigh*

Endometrial Ablation Update:

So far, so good as far as I can tell. I haven’t noticed much of a change as of yet but I do know it takes time. The heavy bleeding has stopped, but I’m still having some sort of fluid leakage. From what I understand, this is normal and a sign of healing. If I do any type of heavy lifting, walking long distances, or just moving around too much, I still feel some strong cramping and pain in my abdomen. I don’t know how much of this is still from healing or is from other things going wrong with my body. My follow-up is the week after next and I’ll be grateful when I’ll be able to take a long, relaxing bath again. I am looking forward to being fully healed and seeing if there’s any noticeable improvement in the next few months.

What My Psychiatrist Said:

Went for another appointment with my therapist this week. I find it helpful to talk to someone who understands the healthcare system, in addition to psychology, to aid with navigating through this crazy time in my life. We’ve delved into more of how each week has been, how I’ve handled everything, and it gives me an outlet to discuss all the things I debate back and forth in my head as far as treatment, doctors, the future, etc. She doesn’t think I actually have a psychological disorder, at least this time around, just normal anxiety for the circumstances. I often wonder how much of my panic disorder years ago was actually due to the physiological changes that were occurring in my body that I didn’t realize or even recognize at the time.

We discussed some of the newer symptoms I’ve experienced lately and how frustrated I am that the majority of these newer symptoms, as well as some that have continued on for months now, have not even been documented in my health records (which I am sure also helped in getting my STD denied). Not to mention the lack of treatment or concern about them at all. She’s insisting that I get an MRI of my brain, which ironically I have been asking for repeatedly over the last couple of years, but have been told it is not a necessity. My therapist is now the fourth person in the medical field to advise me to have this test, although none of them have the capacity to order it themselves. She’s extremely worried about the lymph nodes  on the side of my head (not to far from the biggest patch of hair loss) that have continued to remain swollen and are still hard as a rock, in addition to the memory loss and word displacement. The new rashes and continued hair loss is inconvenient, of course, but not the most worrisome problem at this point. Mainly, her biggest red flag is the olfactory hallucinations that I’ve had for years, but are becoming more and more frequent the longer I go undiagnosed. So when I try out yet ANOTHER primary care physician next week, I need to see if she can refer me for an MRI. 

Dr. Appointments & Medical Testing:


Many more test and consultations with new doctor’s coming up. Next week in particular already is making me tired and we’re not even there yet. (The combination of all those appointments, on top of work and school, is going to be brutal.) Here’s what I have scheduled so far:

  • May
    • 18th: Therapy
    • 20th: Testing in Denver.
      • Ultrasoundgallbladder. It showed distention at the end of 2013, but the HIDA scan showed 60% functioning. Testing noted as normal.
      • pH Impedance testing beings with tubing placement.
        • I’ll have a tube place thph_monitoringrough my nose and down into my stomach. It will measure the amount of acid that is present and I will have to wear the tube & monitoring box for 24 hours.
    • 21st: Testing in Denver
      • pH Impedance removal.
      • Gastric Emptying Study.
        • This test takes 4 hours. No joke. Where I will have to get down a bowl of oatmeal (luckily they aren’t making me do the egg beaters due to allergy), toast with jam, and some sort of liquid drink. We all know how eating/drinking studies go, but I am really interested in seeing what they find as it takes weeks for food to move through my system.
    • 22nd: Appointment with yet another primary care office.
      • Hopefully this goes better than the last few.
    • 27th: Follow-up on endometrial ablation.
    • 28th: Dentist Appointment
      • My teeth have recently started hurting more than usual, I’m losing color in a few of my teeth rapidly, and suddenly it feels like I have cavities on both sides of my mouth. 
  • June
    • 1st: Follow-up with Immunology
    • 11th: Vascular Surgery Consultation in Denver
      • for the Nutcracker Syndrome. Finally!
    • 18th: Follow-up with Gastroenterology
  • July
    • 8th: Cardiology Consultation in Denver
      • for the tachycardia and discuss P.O.T.S. testing.

So, that is all that is currently on the books for now. I know for a fact that Vascular Surgery will need additional medical testing. And if I can convince the primary doctor I am meeting next week to order an MRI, then I may be able to include neurology to my list.Not sure what the other doctors will have in store for me next either, but I guess only time and tests will tell.

And Finally: The Win of Week

Standing Up For Myself & Becoming My Own Advocate

I have never gone out of my way to write a bad review for ANYONE in my life. I don’t like making waves, especially when it comes from doctors. It’s not that I am necessarily intimidated but I know I NEED them now more than they need me, so I have kept my mouth shut. I see where this has gotten me with my current PCP and after waiting three weeks for Dr. B (mentioned in this post) to get back to me, with no response, I decided to leave them a review on Facebook. It actually did make me feel better to let them know how disappointed I was in my visit. 

Here’s what I wrote:

“I wanted to like this place, I really did. I stayed optimistic because it received good reviews. I’m dealing with a chronic illness and seeing a lot of specialist in Denver after years of my symptoms being blown off, so obviously having an organized primary care office is important.
While everyone in the office is pleasant and nice, it’s not running well. There was one person ahead of me in the lobby when I arrived. My apt was at 10:30, it was about noon when I got into the exam room. The sheet had not been changed on the bed and the room had not been cleaned up after last patient, which is gross. Nurse had trouble reading my blood pressure and took a long time to put in medications into the computer. Then another wait. The practitioner comes in, starts to review my history but seems overwhelmed and tells me she’ll have to copy it, read through, and call me in a week.
I had some abnormal testing that I needed a referral to vascular surgery for. Even had done the leg work and found someone in town who took my insurance and new patients.
No exam was done, but she listened to my heart and that was it.
They wanted all my records, which took about 20 minutes to scan in. I think I left the clinic at around 1:00 pm, so two and a half hours for nothing.
I waited the week, and called that Friday to check status. Left a message but no call back. Monday morning I left another message and when I didn’t hear by later in the afternoon, I called again. Spoke to the receptionist, said they’ve been working on it but just so busy and the practitioner week call me. Even at this point, I’m trying to be optimistic and give them the benefit of the doubt.
My appointment was April 23. So far, No call, no referral, and no different appointment set up as promised. I know doctor’s offices are busy, but really? This was a huge waste of time, which I guess when you’ve waiting five, almost six years for a diagnosis, what’s another month for a referral, then god knows how long to see the specialist.
Don’t go here if you have any chronic conditions or value your time. (Ask the guy who was screaming about the wait when I first arrived. I should have taken that as an omen.)
I tried to be patient, but I’m too sick to wait months, if they can even remember me by then. And forgetting to call after an already not so good first impression has me giving up on *Name of Clinic*.

Their response was:

“Thank you so very much for taking time to give us feedback. We sincerely appreciate it and would like to apologize for your bad experience as we experience growing pains. We are happy to report that since your visit, we have hired another Medical Assistant with a 3rd one starting next Monday! We have also hired a Patient Coordinator to handle referrals and another Nurse Practitioner who will start in 2 weeks. Patient care is our focus and while we love knowing when we get it right – we absolutely need to know when we don’t. Thank you again. Someone from our office will reach out to you today. Have a wonderful day!”

They did call today and I spoke with the office manager. She’s going to talk to the provider on Monday about doing what she had told me she was going to do. The records, as she was reading them to me, said they were waiting for my records (which I spent 20-30 minutes having scanned into their system – luckily she was there and remembered) and I was to schedule an appointment when I needed medications refilled (which was never discussed and why would I ask you for anything after this visit?). Oh, well. It felt good to get it out. I doubt I’ll continue any care there but I am interested to see if I get a call on Monday.

“You go ahead, push you luck
Find out how much love the world can hold
Once upon a time I had control
And reigned my soul in tight

Well the whole truth, it’s like the story of a wave unfurled
But I held the evil of the world, so I stopped the tide, froze it up from inside
And it felt like a winter machine that you go through and then
You catch your breath and winter starts again
And everyone else is spring bound

Then when I chose to live, there was no joy it’s just a line I crossed
I wasn’t worth the pain my death would cost, so I was not lost or found
And if I was to sleep, I knew my family had more truth to tell
And so I traveled down a whispering well to know myself through them”

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