Feeling kind of fragile lately, I know only I can save me now…

“Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder”

(Jennifer Marks – Lyrics Below)


Lately,

I feel the universe is testing me

To see if I will break…

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What do you do when you can’t do it all?
When everything is extremely important and none of it can be eliminated?
And all of it is time sensitive?

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 It feels like it’s never going to end.

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But so much has happened, and is happening

in both my life and my health.

I’ve been waiting for a free moment to update,

but I don’t even know where to start.


No Sleep September 

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Wasn’t able to sleep for weeks all through September, although it seemed to run into the first week of October. No idea why, I just suddenly became “nocturnal”.  I would be wide awake until about 10 am before I would then crash out until about 5 or 6 pm. I tried forcing myself to stay up, hoping I’d fall asleep early, but even that didn’t work. Again, I wouldn’t get tired to 10 am and would be “stuck” awake for 2-3 days. It was awful.

I am FINALLY back to sleeping at night, but now all I want to do is sleep. No amount of caffeine seems to fix my tiredness. I talked to a few of my doctors about it and none of them really seemed too worried about it except for my therapist. I guess we’ll see how the next few weeks go and bring it up again at my follow-up appointments, but I’m really worried how drastically my sleep patterns have changed.

The ups and downs with doctors

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Gastroenterology

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I had a follow up with my GI doc mid-September. After meeting with vascular surgery and the lack of medical evidence from the last few rounds of GI testing, I assumed we were pretty much done. Boy, was I wrong.

Despite reviewing the update from the vascular surgeon, she wanted to order even more testing. Excuse me, what? I wasn’t happy, to say the least. Especially because a few of the ones she ordered were ones I’ve already had in the past that all came back normal, not to mention that every GI test involves some sort of pain or torture.I also really don’t want to do them again, but she wanted to see if there is any change between then and now, especially with confirmation of Superior Mesenteric Artery Syndrome (SMAS) now. Plus, she talked with the vascular surgeon and convinced them that I needed to redo the upper GI series/small bowel follow through, even though he said it wasn’t necessary. This test, out of all the medical tests I’ve ever had, has been nemesis since early childhood. Even now, I cringe thinking about it.

Really, though, I have been having medical testing multiple times a week since February and frankly, I’m just tired. But if I decline to do them, then I am a “noncompliant patient” and it could affect my disability claims. *Sigh* There’s no winning, so here I am, yet again.

Vascular Surgery

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I was excited for my follow with the vascular surgeon with how well our consult went the month before and was ready to get a game plan going to treat the vascular compression syndromes. Originally, I was scheduled for an afternoon venogram that day to measure the pressure of blood flow in the veins that were compressed and see if they could confirm a diagnosis of pelvic congestion syndrome. I should have known that the plan could potentially change (especially after he changed his mind on needing additional GI testing), but he seemed so confident at our consult that I didn’t even give it a second thought. Wrong again.

A week or so before my appointment, I received a call from the same hospital asking to schedule with Dr. So-And-So. I had no idea who Dr. So-And-So was. His receptionist explained that he was a GI surgeon that my vascular surgeon called to set up a consult with because he will be assisting in my surgery. MY SURGERY?!?!?! It was news to me, but I scheduled anyways. I think to myself, FINALLY! We’re going to do something. I was both excited and petrified at the same time, especially given the potential severity and risks (depending on which type of surgery they were looking at doing).

I started making lists of things to get myself ready, reading about the pros and cons of each procedure, etc. I even made it Facebook official:

September 22:

I just got a call from the GI surgeon at University. The Vascular Surgeon called him to see if he could assist with surgery, so I have my consult end of October. Looks like we’re going in to fix the SMAS, Nutcracker, and May-Thurner all at once.

I’m petrified and ecstatic all at once. I’ll have to wait until all testing and consults are done to see if they are stenting the veins or completely “rerouting” them. Huge difference in recovery time. From what I hear full recovery isn’t guaranteed or it can fail entirely, but this is my only shot of ever feeling better.
Hoping for surgery around Christmas.

Essentially, overplanning like I usually do. Then I realized, I didn’t receive the document about prep instructions for the venogram in the mail as I expected. I decided to call back to the hospital to see what I needed to do. Good thing I called, though, because they didn’t schedule me for a venogram like I was told during my consult. It was just a follow-up appointment. Um, okay… I thought maybe they found something different during their medical conference, where they were going to review my scans again to make sure nothing had been missed. I was even more anxious for the follow-up now.

The day of the appointment, we drive the hour and a half up there and we’re almost late because traffic was horrible. I hadn’t slept well the night before at all, but I just really wanted to know what was going on with surgery. For some reason, I just had a really bad feeling  – it wasn’t until the appointment was over that I figured out why. We meet with a student, who takes the basic info about how I am doing and how literally nothing had changed since our first meeting together.

The doctor comes in a few minutes later and says that he thought all my testing that was recently ordered through my GI doctor (at another hospital, I might add) would have been done by now. Nope, we JUST got it scheduled. He says there’s nothing to really go over until all that’s done. So, then this appointment is a waste of time? Basically – Sorry that no one called to verify. I’m speechless. I ask him why we needed the tests run again – just to see if there is anything else it could be. Wait, are we NOT sure anymore? Well, we know that the compressions are there, but we don’t want to make it worse with surgery if something else could possibly be causing your symptoms. What happened with doing the venogram? I’m okay with scheduling that but if the tests show something else, then we can pursue that first. Then why are you sending me for a surgery consult with your colleague, who is supposed to assist in the surgery that  you don’t want to do because it could potentially make my symptoms worse? 

I didn’t say the last part, of course, but I left my appointment both angry and frustrated yet again. I’m so tired of doctors changing their minds on what they want to do. So far, all they keep doing is running medical test after medical test, not providing any treatment.It just feels like a giant waste of time. I came home and vented about this on one of the support group pages I follow and I’m pretty sure that  someone pinpointed exactly why this doctor changed his mind so suddenly. It’s happened to her too, multiple times. Because of the complexity of the surgeries, on top of the fact that it would be multiple interventions at a time and with more than one doctor performing, they get “scared” to “make it worse”. They begin stalling by ordering more tests or try this medication, even though it’s already been done – just to buy time. To me, it makes sense, although I can never prove it.

My venogram is actually scheduled now for December 3 after my continuous testing supposedly ends. We’ll see if that even happens. If it doesn’t, I don’t know what I’ll do at this point.

A new Primary Care doctor

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In the midst of all the other doctor drama, I also had to begin my search once again for a new primary care doctor. If you remember from early posts (And it’s a sad pictureSay something, I’m giving up on you, I know the shame in your defeat or Oh doctor, doctor), finding a GOOD primary care doctor has been the biggest challenge in my quest of finding a diagnosis. There’s something in this town that make doctors… oh, what’s the word?  oh yeah… WORTHLESS. Which is why I travel so far to see specialists, despite living in a relatively large city. But seeing as my past PCP disappeared out of nowhere, I had no choice but to find a new primary care physician (although to be honest – I only stayed with her out of convenience, despite that she worked in the worst medical office consisting of the rudest staff to I’ve encountered to date).

Earlier in the year when I had tried to find a new doctor, I originally called a clinic that ended up not taking my insurance, but the receptionist who answered actually was on the same insurance plan. She told me to try one specific clinic because they were great and she had felt my frustration with quite a few of the other doctors in town. Glad it’s not just me. However, after the fiasco with the few offices I had tried back in the Spring, I was too worn out to try and find a new doctor, so I never called them. Luckily, I kept their number, though.

I was so worried about having to go through this process again and I really worked myself up about seeing a new doctor. But ultimately, he turned out to be better than expected. The clinic was both clean and nice. The receptionists were friendly and organized as well, which was a huge difference from the last practice. The wait wasn’t too long and the doctor spent a great deal of time with me, learning about my diagnoses, comparing “expected symptoms and treatment” to my own personal experiences, and he actually did an exam. He asked me if there was anything else I needed him to do, to which I replied I had short-term disability and work paperwork that I needed to have filled out because they wanted me back at work following this appointment (which had been stressing me out over the last few weeks, to say the least).

What amazed me, though, was the fact that he refused to fill them out. Instead, he wrote them a letter saying that I am really sick with multiple complicated diagnoses and it could take a while to get a treatment plan going before I will be well enough to work again. I was in shock. He believed me! I can’t even put into words how grateful I am for him taking the time to sit down with me and listen to what I had to say. He scheduled me for a follow-up in a month just to see how things are progressing with my specialists and ordered my general, yearly bloodwork to make sure nothing is missed along the way. I’m so glad to finally have a good doctor that is also close to home.

Work and disability

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Off the advice of my therapist, I decided to start my social security disability claim over the summer just in case I wasn’t able to get back to work as fast as I had originally thought. It was a good thing I did since I currently have no expected return to work date now. So far, the process hasn’t been too bad. However, a few weeks ago, I received a letter in the mail stating I was being sent for a psychiatric evaluation. I was stunned and worried. Did they think it is all in my head? Do they think I’m lying about my symptoms? why are they doing this? Needless to say, I was worried. I talked with my therapist about the neuropsychologist that was doing my mental comprehensive exam with, and she, unfortunately, didn’t have the best news for me since she was familiar with him. Great. Again, I overprepared myself with tons of documents and information to bring to the exam, especially since she told me to bring proof of a diagnosis so he doesn’t label me as having a somatization disorder. But, overall, I think the appointment went well. Despite the fact that he wasn’t exceptionally outgoing or friendly, he seemed to identify with my answers to his questions and stated that I was very pleasant and intelligent. So I am hoping this appointment helped my case, instead of hurting it. Still, I worry about my future without disability at this point, especially considering that the number of appointments and testing don’t look like they’ll be decreasing any time soon.

Later in the afternoon, following my appointment for the CE exam, I received a call from my manager at work. As soon as I picked up, I knew something was wrong. He conferenced in a woman from the human resources department and instantly I knew – I was getting fired. I held back my tears as they advised me that since I had no expected return date that they would need to let me go because of business needs. I was heartbroken, but I understood. Still, it didn’t stop oncoming fear and panic inside me. My thoughts were racing through my head. I felt like I couldn’t breath.

What am I going to do?

I’ve never been fired from a job before.

How is this going to affect my short-term disability claim?

Or the long-term disability claim that was just initiated the day before?

How am I going to live? or survive?

We need to renew our lease next month…

What am I going to do?

I was beside myself. More importantly, I was ashamed. Up until now, I could still say I had an amazing job and that I was just on medical leave. Now I’m just unemployed. I have worked consistently since the age of 15, no matter the symptoms but only started having real trouble with maintaining work this past December when symptoms got out of control. I felt like a failure. Luckily, though, I am still eligible to continue my short-term disability benefits and finish my long-term disability application since I was on medical leave during my termination. Still, so much more has been lost than gained and it’s been difficult to remain positive.

To top it all off, getting fired has added even more work for because now I have to write  a letter to each and every state asking to return my insurance licenses so that I don’t receive fines for not continuing education or fees, in addition to the separation paperwork, returning equipment, moving and changing all of my policies. And remember, I still have all of these doctors appointments and medical testing scheduled multiple times a week, maintaining my current STD claim, finishing up the paperwork and processing for both SSDI and LTD, and finals for school. I’m about to pull what little left of hair I have left out of my head, I swear. But somehow, like everything else, it will get done. I’m just not sure how to do it all exactly, but I have no choice but to find a way.

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And last but definitely not least, 

I received yet another diagnosis.

But seeing as this post is already too long, on top of the fact that I am exhausted from all that has been going on, I’ll update this information with more specific posts on some of the medical testing I’ve been going through. Thank you all for listening and allowing me to vent about everything going on. In the meantime, I’ll try not to let all of this bother me,  although that is easier said than done. I just need to focus and get it all done the best  that I can. Really, it’s the only thing I can do.

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Fragile by Jennifer Marks

There’s a hole at the bottom of this cup
I want to fix it so I can fill it up
There is sand where the flowers used to be
I was happy then and you were here with me

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile

There is dust in the seat where you once sat
Time is cruel it’s too stubborn to turn back
My heart’s so heavy it will never float
I’m holding on, cause I’m afraid to let go

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of …

Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile.

And it’s a sad picture, the final blow hits you…

The chaos that surrounds a life with chronic illness never ceases to amaze me. Everything is always changing: day by day, hour by hour, minute by minute. It’s a constant game of rearranging. Not only your plans but everything you believe in  (or don’t believe in ) as well. You don’t ever dare to get comfortable because as soon as you accept one thing, even just a simple thing, something else is waiting just around the corner to shake things up once again. There really isn’t time for boredom like one might think when you’re living the sick life.

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“And it’s a sad picture, the final blow hits you
Somebody else gets what you wanted again and
You know it’s all the same, another time and place
Repeating history and you’re getting sick of it…”

I don’t know why I am continually shocked by the lack of competence at my current primary care office. You’d think I’d only be surprised when things are running smoothly considering all the problems I’ve experienced with this clinic. It’s been a gradual decline in patient care over the last year or so, although my last few visits did were a lot smoother than the ones prior. I had even decided to stop my search for a new primary care doctor because I really had hope that they were changing  for the better and that everything was starting to slowly improve. But as soon as I start to believe in my doctor again, my recent visit to the office only confirms that they really are a lost caused.  I swear, the clinic’s only ability is in ineptitude.

I was scheduled for bright and early last Monday morning. I woke up feeling awful and really didn’t feel like going, especially because I was going by myself and I had to drive there on my own since my husband had to work, all the while I could barely move or stand up due to pain.  But I knew I couldn’t miss it because it was my quarterly medication refill appointment to evaluate my current medication list. Plus, I had to schedule this appointment two months in advance and I can only imagine how far out it would be if I rescheduled.

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Luckily my PCP office is in town, so it’s not as bad as traveling for other appointments. I managed to struggle and get through the drive by myself, despite feeling nervous about it. I even arrived five minutes early, breathing a silent sigh of relief. However, as I get out of my car and start walking towards the building, a man cuts in front of me right as I’m about to get to the door. I am now forced to walk into the building right behind this man, who is not only coughing and gagging with every step he takes but is also not covering his mouth while doing so. “Inconsiderate a**h***. I know toddlers that display more manners than you…” I think to myself, but I didn’t bother to open my mouth. It’s not worth the trouble and it’ was way too early for that, even though I was feeling pretty cranky. Still,  I was honestly disgusted by the lack of courtesy this man extended to those around him. I just prayed that I wouldn’t catch whatever germs he was insistent on spreading.

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Finally, it’s my turn to check in. The receptionist looks frazzled already and they haven’t even been open a full hour yet. I almost feel bad for her… almost. She takes my co-pay and tells me to have a seat. I do, but far away on the other side of that inconsiderate cougher. I expected a long wait, given the number of patients in the waiting room but hoped they were all being seen at the urgent care side. This office can either be super quick and I’m in-and-out within 10 minutes or I’ll be there for 4 hours, there’s no in-between, so I’m usually prepared but I forgot my book this time at home. However, as I’m waiting, I’m just looking vaguely around the room until I realize that all I can see is actual filth pretty much everywhere. It’s not like I was looking hard or anything, it was just visibly THAT dirty – you couldn’t miss it.

  • There were used tissues crumpled up under the seats.
  • Spots, of what I could only assume were a variety of substances, left all over the tiles.
  • Dust and debris that had collected on both the end tables and magazine racks.
  • There were hand prints on most of the windows and the doors.
  • And a piece of gum was sticking out from the chair next to me.

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It’s obvious this place has not been cleaned or sanitized in a long time. I literally wanted to throw up, only imagining what else was there that I could not see. It sends shivers down my spine, even now.

Then, I watched as the receptionist completely ignored phone call after phone call as she was filing her nails. (Yes, that actually happened.) Her face showed annoyance every single time a new call would ring in. Um, hello? Isn’t that  your job? Again, just to reiterate, the clinic had only been open for about an hour at this point. I would have smacked myself in the head at this point, but I worried about touching my hands to my face given the state of my surroundings.

As my OCD started to take over and I began losing all of my cognitive ability to have any rational thoughts at this point (My mind was prompting me to either run widely out of the building or set the place on fire: “I’m sorry officer, it was for the safety of all humanity, I swear…”), the receptionist called me up to the front desk.

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She handed me a piece of paper and said, “they don’t need to see you today. Here’s your prescription.” Wait.. what? I am really confused. I need to actually see the doctor today. That’s why I’m here. But as I was gathering my thoughts, she must have noticed that either my head cock itself to one side or that I displayed a baffled expression across my face because she blatantly followed it up with, “your doctor isn’t here anymore, so another doctor is giving you this one-time script.”  I’m literally left speechless.

Hold up, wait just a minute.

Did you just say that my doctor is no longer here?

MY primary care doctor is gone?

Like gone, gone? Forever?

Where did she go?

Did she quit? Was she fired?

What happened?

What’s going to happen to my care? 

I have paperwork for my disability claims that need to be completed here soon.

I need a test that my GI doctor wants done to be ordered down here in town – I need a referral.

I also needed to adjust the levels of some of these medications today.

What am I supposed to do now?

I was in literal shock. After all of this, all we’ve been through… she’s just gone? I felt the panic slowly rising inside of me.  She then informs me that the manager will call me later on that day and they have no idea what they are going to be doing with all of my doctor’s patients. Before I can say a word, she yells for the next person to come to the front desk. I figured it was better to talk to the manager anyway, what is the receptionist with a bad attitude going to do for me anyways. I take my prescription and head home.

As soon as I was in my car and driving away, I was suddenly struck by feelings of anger and disappointment.

Why didn’t they call me BEFORE the appointment?

They just wasted my time.

Why did I have to wait so long?

Why did she even bother to check me in?

And they took my co-pay, for what?

I didn’t see a doctor.

Why couldn’t they schedule me another appointment with the other doctor until they figure this all out?

What a giant mess this is going to be!

Now I have to figure something else out and start the process all over again with a new doctor.

Perfect timing. Just my luck.

Well, at least I got my prescription for this month.

I decided to drop it off at the pharmacy to get filled on my way home. At least then something would get accomplished that day. When I handed it to the pharmacy tech, who knows me all too well at this point, he looked confused as he’s entered it into the computer. He then stepped away for a minute to chat with the main pharmacist working that day. As he walked back over, he handed me the paper with my prescription on it because they can’t legally take it as written. Are you kidding me? Evidently the name of the doctor who signed it and the DEA number did not match. I asked if they could call the doctor to verify it but because of the type of medication that  it was for I had  to have a new one written up – correctly. *sigh* I walked back to my car and called over to the clinic, in hopes that they can have it prepared by the time I drive back over there for a new one. After multiple rings, someone finally answered. I explained the situation and she tells me she needs to connect me to someone else. The phone then only rang a single time before going to some random voicemail message. I hang up.

My blood was boiling the entire drive back there, thinking all the things I was going to say to these people. I angrily pulled into the parking lot, slammed my car door, and stomped into the waiting room. However, before I even approached the front desk I heard a woman screaming from the top of her lungs. No sooner did I round the corner that I saw the woman who was yelling and that it was directed toward the receptionist from earlier. There were at least 4 or 5 patients behind the woman, all angrily cursing at the receptionist as well. It was like a mob scene in there and I half expected for a full-out riot to break out, but it never did. I patiently waited as everyone finished  venting their frustrations at (not to) the receptionist before they each walked away one-by-one. At least I’m not the only one who got screwed here. Just imagine how many people this situation actually affects. They shouldn’t treat their patients this way! At this time, however, someone else walks up to front desk to give the first receptionist a break (probably well needed, I’m sure). I, again, politely tell her what’s going on and she said she’d be right back.

While waiting, I decide to let the whole thing, including my own built up anger, just go. What can I do about it anyways? When she returned, she handed me a corrected script. I told her to “have a nice day” (although I knew that she probably wouldn’t. Not the way that day started anyway). Once again, I pull away… only this time I knew in my heart it would be my last.

“Because these things will change
Can you feel it now?
These walls that they put up to hold us back will fall down
It’s a revolution, the time will come
For us to finally win
And we’ll sing hallelujah, we’ll sing hallelujah”

The manager never did call about rescheduling my appointment as promised. I did my due diligence by following up with a call to the clinic on Monday and asked reschedule, but I was told that they won’t be taking any of my old doctor’s patient’s at this time. I did ask to see the other doctor, telling her about the paperwork and medication refills I would be needing very soon. She said she would leave a message with the old doctor’s nurses to see what they could do. One of the nurses did call me today, telling me my prescription was ready for pick up. I politely let her know that I had already received that one but was trying to schedule an appointment for next month. She told me they have no doctor to schedule me with, they are all gone, just the director who is filling in for the time being until new doctors are hired. She also said I can call when I need them and they’ll see who is there at that time. I thank her, but only because she was the only one who ever knew what was going on half of the time, and hang up the phone. I should have left this practice months ago anyway. Perhaps this whole situation is truly a blessing in disguise.

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Thankfully I had scheduled myself with a completely different clinic shortly after I got home that day. It was for three weeks out, earliest they could get me in, but they sounded a lot more organized (at least over the phone). Although this is probably the worst timing given all that’s currently going on with further testing and new specialty visits, not to mention work and disability, I still feel that this is probably for the best overall. For not only my personal health and safety but both my mental and emotional status as well. It’s a shame that what was once such a great clinic (with an amazing doctor who listened and believed in me) turned into such a dysfunctional mess. I still don’t know if my doctor quit or got fired (or who knows what else) since no one is talking, but I wouldn’t blame her for leaving either way.

Ultimately, life continues to move forward regardless of any setbacks. I now have some diagnoses. Treatment (even if it is mild) has been initiated. My doctor’s finally believe in me now. And there’s finally hope for the future once again.

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Lyrics quoted: “Changes” by Tayor Swift

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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“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:

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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”

Don’t Lose Your Wings Until You Learn How to Sing Yourself to Sleep


Everything feels so bittersweet. I am at a crossroads with finding my diagnosis. I know what NEEDS to get done next, I’m just not sure HOW to get there from my current situation. I’m at a standstill.

I saw my primary care doctor yesterday to get a note back to work. I’m officially running out of money, having not received a paycheck in over two months. I couldn’t prolong it any further. While I love my job, I still feel incredibly awful all the time, I still have testing and doctor’s appointments scheduled every week, and I am coming back without a diagnosis. I’m feeling pretty bruised and defeated about this. Nothing has gone as planned and I’m just left to wonder, How in the hell am I going to do this? 

To be honest, I’m barely getting though my days without work and now I have to find a way to add more into this hellish thing I call my day-to-day life. Trust me when I say that my medical leave was neither relaxing nor helpful in any way, shape, or form.  And all I’m coming back with is more questions, fewer answers, and even more anger than before. I’m handling everything the best I can, but I don’t know how much longer I can hold on to any hope when I keep getting beat down. So let’s add extra stress and worrying about not losing my job due to attendance, finding time for appointments so maybe one day I could feel better, and not sacrificing the amount of health I have left.

So back to my doctor’s appointment. I needed to get a note allowing me back to work, as well as my husband’s FMLA paperwork that needed to be updated so he could continue to take me to appointments. They couldn’t get me in at the clinic closest to my house, so I had to drive 30 minutes away to go to the south location. The weather has been absolutely crazy this week (snow, wind, hail, thunder, lightening, tornadoes, etc) and it ended up taking me just about an hour to get there. I almost didn’t go because I had such bad cramping from the endometrial ablation, and I was just overcome with dizziness and nausea, so much so that I didn’t sleep even a single minute the night before. It was hard to muster up the strength to get into the car and drive there, with tears welling up in my eyes, knowing I had to not only deal with this doctor (who has given up on me and my illness) but had to ask for something that I know my body is not ready for. Just so I can get a paycheck.

The office is surprisingly slow (more than likely because the weather was awful) and the nurse gets me back rather quickly. She take my vitals, and puts me in a room. I hand them the FMLA paperwork, with the previous paperwork so that it doesn’t get messed up, and the note that my therapist wrote advising I start Part Time to adjust back to work, as she doesn’t think it’s safe for me to do 10 hour shifts, especially right away. I agree. The nurses step out of the room and  I wait. And I fall asleep in the chair sitting up because I’m exhausted and in pain. It takes them a full hour to hand copy 3 pages exactly as they had done before. They tell me the doc is just completing my note for work and I’ll be good to go.

The doctor never comes into the room. She’s in her office somewhere. I planned to see if I could ask her about some of the new symptoms, but it’s lunch time at this point.  

  • My occipital lymph nodes keep swelling after I have any testing or procedures. This just started in April.
  • I’m getting a flushing, red rash across my cheeks and nose almost daily now.
  • I had this sudden onset of extreme burning with a red rash on my extremities that seems to come from nowhere. It itches and burns real bad, and it has these tiny broken red blood vessels throughout. 
  • I’ve had ongoing olfactory hallucinations for months, but she hasn’t asked me or seen me to discuss. I keep smelling either dirty, wet sock/feet or electrical fire. It comes on so quickly and hard, I’ve found myself jumping out of bed searching the whole house but no one else can smell it.
  • My at home testing/finding that may explain the cause of each and every one of my symptoms.

The nurses tell me I am ready to check out. I ask the nurses about the lymph nodes, considering they’re hurting harder than when I first arrived at the office, and I’m hoping maybe they’ll get the doctor I can’t see around anywhere. I know she’s somewhere because she signed all the paperwork. They joke that my body does weirdest things, but they really couldn’t tell me why that would happen. One of the other nurses, whose last day was yesterday (which I can’t blame him for that), says he has an idea about what I have based on my symptoms but I’d have to bring that up with my provider. I try to probe more, but he won’t tell me anything more, and I’m not sure if he actually thinks he knows what it could be or if he’s mocking me as if I’m crazy. My PCP then sticks her head out, yells that my lymph node swelling is normal. If they stay swollen longer than six weeks, then come talk to her. She shuts the office door. I give up and leave. I look at the paperwork. She copied word for word what my therapist wrote, only on their letterhead. It doesn’t have any specifics on it, so not sure if work will accept this or not, but I’m not turning around.

I wish I had been more assertive and demanding, but it wouldn’t have done any good. She doesn’t care about how I feel or what’s going on with me. I’ve seen her fire clients before and right now I need her, if for nothing else, my medications.  I still need two referrals, but I can’t get them. I want to report her. I want to fire her. I want to write her a letter about how awful I feel after going there. I want to tell the world to avoid this place. How she can approve me back to work without examining me? I brought copies of the most recent tests and discharge papers from the hospital, they didn’t need them supposedly. It doesn’t matter that I’m bleeding harder and cramping more than the first day of my surgery. It doesn’t matter that the syncope episodes are becoming more frequent. Or that I’m seeing colored light bouncing in my vision often, daily. That I still can’t eat without getting sick, so I won’t be able to eat when I am at work or I’ll be in the bathroom all day, and yet again risk my job. She just doesn’t care. And I suffer because of it. 

I worry about the future. What if I lose my job because you didn’t do yours? What if I can’t go to work? Your lack of proper medical notes will kill any part of getting disability, not that I want to go that way. I just want to feel better. I want my healthcare managed. I want to know that no matter what I have, I’ll be OK. You have killed that for me. More than likely, you are slowly killing me too. I’m angry but I have no idea what else to do. I call doctors everyday, trying to find something better. They won’t see me or can’t see me for months. I need help and you have abandoned me to find my way with the current state of healthcare. And there is NOTHING I can do about it, which is the worst part of all. 


“Cover me in fire
Drop me down to the deepest darkest ocean
So I never have to feel that way again
Color on the carpet seven eyes on the ceiling
There’s a feeling that comes over you

When you know that
Something has changed forever
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Please don’t bring me down
With that look on your face
Because I almost didn’t make it and one day
You might know how that feels

I heard the mermaids singing once
When I was very small
But now the sound of the traffic and human voices
Wake us ’til we drown

Don’t lose your wings ’til you learn
How to sing yourself to sleep
I know it seems funny but
Maybe we just said goodbye

I feel strange enough to cry
Strawberry marigold smile
Seven angels seven plagues
And the trumpet and the saved

I tell you man if it was me on that beast
I would not let you fuck with me like that
It’s dangerous to see beyond
The visions that we breathe

But I can hold it in my hand and know
That there is something to this that will never die
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Strawberry marigold smile
Strawberry marigold smile”