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”

Endometrial Ablation with Novasure: Personal Review

I had my endometrial ablation and hysteroscopy done yesterday in-hospital. My OB/GYN uses the Novasure method, typically in his office with oral sedation, but due to my long list of chronic issues and malignant hyperthermia susceptibility, it was decided I would have my procedure in the main hospital instead.


Here is the brochure if you want to look into this particular method.

But just to give you a quick overview, Novasure works by permanently removing the endometrium, or the lining of the uterus (the part that causes the bleeding), with a quick delivery of radio frequency energy. It supposed to eliminate or lower the amount of bleeding that is typical with the menstrual cycle. It’s not recommended for anyone who is pregnant or planning to ever become pregnant due to complications. In going over reviews, of course there’s always risks with any type of surgery, but for the most part a lot of what I read were great reviews and success with treatment. For some, they eventually had to have a full hysterectomy, but more than likely they were a better candidate for a hysterectomy to start with. Definitely discuss this with your doctor prior to having the procedure.

My check-in time was at 1:30 PM. The only prep I had to do prior to the procedure was to not consume food or water for 8 hour before, so I woke up extra early to get my Starbucks addiction in. I was extremely nervous, having read what to expect after the procedure on the internet the night before. Never a good idea, because your mind ALWAYS looks for the negative, despite all the good reviews. But anyways, I was extremely nauseous all day, but not sure if that was due to nerves, my illness, or a combination of both. I didn’t want my husband to have to take any additional time off, and considering the hospital is a 6 minute drive from my house, I had a friend pick me up and bring me to the hospital to be dropped off.

It was weird to go into a procedure like this in the hospital, let alone by yourself. I almost regretted it, as you’ll see once I get ahead in the story. I go to the front desk to check in. It takes them a while to get my paperwork done and they broke my hospital ID bracelet and had to reprint another. Finally they were done and they told me to hop in the elevators, head to the basement (The BASEMENT?!?!?) and go into the door right in front of me. So I do. You initially walk into a large waiting room, there’s a few people in there, but I can’t tell if this is recovery or if they were waiting on someone. I check in and I’m immediately brought back to get ready.

They started by taking my vitals, which of course the blood pressure cut off all circulation to my left hand because my blood pressure was extremely low again, but finally it puts out a reading. I then have pee in a cup to make sure I’m not pregnant. I joke that my husband would kill me if I was, but they didn’t see it as being very funny. Oh well. I return the cup and then have a seat in the waiting room again. I’m feeling a little more relaxed but still highly uncomfortable due to the nausea. A couple more minutes later, they’re taking me back to get completely ready for my procedure.

They take me down a long hallway, full of tiny recovery rooms and air pressured doors. It reminds me of the TV show House and the way their hospital is set up. They bring me to room 10, which has all my info written on the glass door. I had taken most of my jewelry off at home, but forgot my earrings. I didn’t expect to need to have them out since I didn’t when I had the colonoscopy and EGD a few weeks back. The nurse says I have to so there’s no chance that the metal will take any of the radio frequency and burn me. Fair enough. I hide them in my purse. She’s surprised that I came alone. I told her my husband would come and pick me up once he’s off work and we live really close to the hospital. She was concerned with my belongings, as it would be a while until I would be back in this room, but said they’ve never had a problem with theft. I told her I didn’t bring anything of much importance anyways. I get undressed and into my lovely hospital gown and lay in the bed.

Now the doctor played down the events of this hospital visit, I must say. As I’m listening to all the commotion outside of my room, I can tell this is the BIG surgery department. He told me the procedure itself takes five minutes and then I’d be out of there. I expected it to be similar to the endoscopy procedures I had in-hospital, where they prep me, I’m out, doctor does his thing, and then I go home as soon as I can stand. But this was not going to be the case, as I find out. I had to call my husband and tell him not to come as early as he had originally planned. He gets off work at 3 and I supposed to be in the OR at 3:30 and out by 3:35 tops. It was settled, the nurses would call him when I made it to the second recovery room, part 2. What do you mean part 2? Why is there a recovery part 1? I was so confused.

So I am laying in the bed, one nurse is taking my history on the computer, then other one is placing my catheter. She starts with a small needle and squirts in an extremely harsh medication in to “numb” my forearm. She then pushes the larger catheter in, it starts to feed but then it bends and blows my vein. She says she’ll try the other side and bandages my left forearm to stop the bleeding. She is able to get it in on the right side forearm, but of course not without injecting the burning med again. She tapes it all up and they start me on fluids. The nurse taking my history asks me if I get motion sick. I tell her I get sick whether things are moving or not. She orders a nausea patch as a precaution, even though they’ll be giving me anti-nausea meds through IV during the procedure. I thinks she was more worried about me vomiting than I was. But I’m grateful for the relief. She says they’re running early today, so I should be going to the operating room around 3 instead of 3:30. Awesome. She leaves to get the patch from the pharmacy, but I hear her talking to other nurses about my history, particularly the Nutcracker Syndrome. They need to call the doctor to see if I need to have my kidney blood levels checked prior to surgery. She comes back with the patch, and asks if I’m having trouble with my kidneys. I explain my blood work is all normal, it’s just the vein dumping into my lumbar plexus. They want blood work before they’ll put me under. Sure, no problem. They also switch out my fluids to compensate for my kidneys using another solution. Really, my kidneys ARE FINE, but OK.

The phlebotomist comes down after 30 minutes to take my blood. She sees that my left vein is blown but doesn’t want to mess up my working catheter, so she decided to draw from the left anyways. She sticks me with the needle so hard, it’s an instant bruise, but she gets the blood she needs and she’s gone. After what seems like forever, I hear the nurses talking again, they need my blood type, they want to do blood transfusions from what it sounds like, but it’s hard to tell because I’m eavesdropping. By now it’s past the 3:30 start for my procedure. Guess I won’t be going home early. I wish they would tell me what’s going on. Finally the nurse comes back in and said the anesthesiologist and doctor would be in to speak with me soon. I was getting nervous, are they not going to do the procedure today? But I felt relieved when they said they were about ready for me. They reviewed what was going to happen and what meds they’ll be using, and how once it’s done, I’ll spend an hour in recovery 1, where you can’t have visitors, and then finally another hour in recovery 2, where I would be allowed visitors.  This seems extreme but OK. The OR nurse comes in, puts pressure devices on my legs to avoid blood clots and wheels me back for the procedure.


The set up was pretty similar to the above picture, not so scary. There’s five nurses in there, along with the anesthesiologist, and the doctor. I  guess it’ll be a show after all. They move me to the operating table and put the leads and monitoring equipment on me, as well as get me hooked back up to fluids. I feel a weird sensation in my arm. The anesthesiologist is standing behind me and leans over to say “I slipped something in your IV”. Now if I hadn’t picked up on his humor earlier, I might have been disturbed by this. It WAS kinda creepy. I say I thought I felt something… But I am pretty sure I didn’t actually finish my sentence. I was out cold.


So this is what they did while I was unconscious. They also checked everything by doing a hysteroscopy to make sure there was nothing else that needed addressing while they were in there. I’m actually glad they put me out, so I didn’t have to experience any of the sensation while partly awake as other’s have when done in the doctor’s office. I heard it was pretty excruciating for about 90 seconds. When it was over, they took me over to recovery 1 to wake up.

I have no recollection of recovery period 1, it felt like I was only there for a couple of minutes before they brought me to my room for the second phase.
They said it was a full hour, so I guess they either gave me too much propofol or I was just really THAT tired. When I get to the second recovery room, I text my husband to see if he’s at the hospital already but he immediately walks in. I guess he didn’t trust anyone to call him, so he just waited it out in the main waiting room up front. The nurse brings me graham crackers, saltines, water, and ice chips. I’m really not even slightly hungry, but I wanted to go home, so I force down some graham crackers and suck on the ice chips. It’s enough for them to let me go. I get my discharge papers and have to stop for the two pain meds they called into the pharmacy. We grab the medications and home we go.

Recovery at home that night was nothing. Very mild cramping and light bleeding, but nothing as bad as I deal with on a regular with my chronic illness symptoms. I had some insomnia, but that’s probably due to my long, drug induced nap. Once I laid down, I was out for the night. This morning was a little rougher. I guess the pain and anti-nausea medications they gave through IV had worn out of my system. Anytime I make a sudden move or stay in one place too long, I get pretty sharp cramping, mostly in both of my lower side areas. The nausea has also increased substantially, but it’s still equivalent (maybe even less) to my usual level. I haven’t taken any of the narcotics for the pain, in fact I haven’t even taken any ibuprofen. I’m still bleeding, but it looks like it is drying up based on the color it has turned to now.

So if anyone has reservations about this procedure or are scared, don’t be. It truly isn’t that bad. They say I won’t know how the procedure took until about three months from now, but I have high hopes that I’ll be one of the lucky ones who has complete elimination of monthly bleeding and no further pain or blood clotting during that time either. I’ll try to remember to update in a few months to let you know how it goes. So far, no regrets.

But if anyone has ANY questions about this procedure, don’t hesitate to comment or message me.


The Doctor Is Going To Microwave My Uterus…

I’m serious… only, it’ll be with radio frequency ablation. I’m having the procedure done on Tuesday, in-hospital. Typically, the procedure is a quick in-and-out visit to the doctor’s office or outpatient facility, but with having Malignant Hyperthermia Susceptibility, all procedures being done in an extremely controlled environment. So back to the hospital it is. I have my pre-op with the hospital tomorrow morning and then pre-op again with my doctor on Monday.  Seems like a lot of prep for a procedure that takes about ten minutes to complete, but I’m glad my doctors are being safe and not sorry.  Amidst all the complicated and random symptoms, it didn’t even initially come to mind that something was wrong with my “lady parts”. I just assumed it was due to everything else going awry in my body.

When I went to the new OB/GYN to discuss the relationship of my ongoing bleeding and the Nutcracker Syndrome, we had a long discussion of my symptoms (in general), as well as the abnormal bleeding I’ve had since I was 13. It’s always been painful and debilitating. I remember missing school and practice every month when my period would come on, I’d just get so sick, barely able to move. And it would come and go at random times, or stay for really long times. Sometimes it wouldn’t come at all. I assumed it was from training (for swimming) and practicing twice a day, as well as going to the gym. In my later teens, I would often have cysts on my ovaries and they would be so painful when they would “burst”. Many doctors thought my chronic abdominal pain MUST be related to “girl issues” and “growing up”. 

I eventually went on birth control. The pills made my stomach turn, so I tried Depo-Provera. It worked great for many years. No weight gain, no nausea, and thankfully, no periods. Eventually when my abdominal pain and nausea came back, with panic attacks, I thought maybe it was the Depo. I had heard horror stories from people being on it for too long. Thinking maybe it was hormonal, I decided to get off it in 2008. Plus it was really expensive at the time. But obviously, getting off it didn’t help much.

Fast forward to 2013. My symptoms had come back with a vengeance, after taking a hiatus for a few years. Month after month, my period would get more intense, painful, and unpredictable. I remember the day I walked into my gynecologist’s office, my husband had to leave work and drive me, I was cramped up that I could barely walk on my own. The nausea was so intense, every move I made I felt like I was going to throw up.  I literally thought I would bleed out and die. The doctor gave me the shot on the spot. 

It seemed to work for the few months, only a few drops of breakthrough bleeding in the first few months. I thought, “Great. I can live again.” My abdominal pain kept continuing, but at least it didn’t get worse during my “time of the month.” A few months later, I notice that I’m starting to bleed a few days before my next shot is due. Then a week, then  two weeks, and so on. This is right before my wedding. So I call the doctor. He prescribes 800 mg ibuprofen, twice a day, that should make it stop. It makes my stomach ill, but the bleeding does not stop. He’s confused. Then he gives me birth control pills WITH the Depo, there’s no way I could bleed on both. I do. And again, my stomach is sick. They check for cysts and do a trans-vaginal ultrasound. Some free fluid and minor things noted, but nothing to explain the bleeding or the pain. 

Currently, I’m starting the bleeding cycle about a week after my shot, leaving me miserable for just under three months. And the clots are so large and abnormal, so the doctor wants to take my edometrium lining to stop the bleeding. 90% of patients either no longer have their period or have minimal periods. So I’m hoping this can at least ease SOME of my pain and symptoms. If not, then it’s on to a full hysterectomy. So we’ll see how it goes. Recovery is usually within a few days, as long as there are no complications. I can’t imagine it going to be any worse than what I’ve gone through already.

The hardest part is talking to friends and family about it. Even my GI doc thinks I’m too young for something so permanent. I will not be able to carry a child (although I technically COULD become pregnant), I know that is shocking to many people, but I’m OK with it. How could I even carry a baby to term? I can’t eat or provide nutrients. I’m constantly ill. And even if I could, what kind of mother would I be, lost in the world of invisible, chronic illness. And what if I pass down whatever this is down to them? Everyone can call me selfish and self-absorbed, but how selfish is it to bring a child into a world full of chaos and inadequate care? Knowing I’m sick and more than likely won’t ever get better, based on my history. My doctor thinks it’s best and so do I.

But I can’t lie, I do feel a little guilty. Not so much for the people who want us to have children for their own reasoning, but really, for those who CAN’T have children, which is true for a couple of my friends. How could I not feel guilty? I can only imagine how they feel . I can see the disappointment in their face when they ask about it. I hate disappointing people. It is partly selfish. And it’s permanent. But most people do not live each day suffering through chronic, debilitating symptoms. They have NO IDEA the drastic things you’ll do to your body for a small amount of relief. I literally can’t remember the last day I had  “good” day. I’d give up almost anything for some peace in my body, even it is momentarily. 

Information about my upcoming procedure: Endometrial Ablation.

I’ll post my review after Tuesday. 

“Let it all out
Get it all out
Rip it out remove it
Don’t be alarmed
When the wound begins to bleed

Cause we’re so scared to find out
What this life’s all about
So scared we’re going to lose it
Not knowing all along
That’s exactly what we need

And today I will trust you with the confidence
Of a man who’s never known defeat
But tomorrow, upon hearing what I did
I will stare at you in disbelief
Oh, inconsistent me
Crying out for consistency

And you said I know that this will hurt
But if I don’t break your heart then things will just get worse
If the burden seems too much to bear
The end will justify the pain it took to get us there

And I’ll let it be known
At times I have shown
Signs of all my weakness
But somewhere in me
There is strength

And you promise me
That you believe
In time I will defeat this
Cause somewhere in me
There is strength

And today I will trust you with the confidence
Of a man who’s never known defeat
And I’ll try my best to just forget
That that man isn’t me

[Chorus x2]

Reach out to me
Make my heart brand new
Every beat will be for you
For you

And I know you know
You touched my life
When you touched my heavy heart and made it light”

“I don’t go to therapy to find out if I’m a freak…”

I’m not exactly sure why I went back to therapy, really. My anxiety has been under control, no panic attacks since I can’t even remember when.  I’ve been pretty stable, despite all that is going on. I told myself it was to stay ahead of the game, to ensure I keep my anxiety in check. I wanted to learn to make decisions without doubting every detail. I wanted to learn to be a self-advocate. To gain self-confidence. To be more assertive, especially with my doctors. I wanted to GAIN CONTROL of my life back. But to be truthful, I think I was depressed.

Well, I think I was depressed anyway. I’ve never been depressed before. Definitely pessimistic, but never depressed. From when my symptoms first came on, it was always suggested that anxiety and depression must be the cause of my abdominal pains. I know my body, maybe too well, and I knew it was not being caused mentally. It was absolutely, positively, without a doubt, not depression or anxiety. Although, after a few years and test after test coming back as “normal”, I thought well maybe I am crazy. Maybe this is all in my head. I do have stress, life is stressful. I must be making myself sick. But after a year of therapy, only talking about wedding planning and drama, my counselor didn’t really think I needed it anymore – unless, of course, I wanted to keep going. It was a long drive and life is busy, so I opted to stop treatment instead. 

But fast forward to the last few weeks, here I am again. I just felt really defeated by everything going on. At first I felt very angry, like the kind of raging anger that rushes through every vein in your body kind of anger. Full of hate and spite. And then I got really sad. Why doesn’t anyone believe me? Why do I always have to prove how sick I really am. It’s visible now, I can’t hide it anymore, even if I wanted to. I feel like I’m literally going to die. I’m tired of fighting, the struggling, the judgement, and stress. I wanted to give up. To quit life. What was the point? What was I fighting for? Was it worth fighting for? Or living for? That’s when I knew it was time to get help. 

I chose a place closer to home this time because driving all over the state for doctors appointments is getting to be enough and honestly, it’s hard to get very far from home with the current state of my illness. She’s a an actual doctor and has a great resume full of work in medical clinics and hospitals, and even works with law enforcement. As you can tell, I did a lot of googling before deciding to give her a call. Her resume, anyways, made her seem like she would be a good choice in understanding where I am coming from right now. She was able to get me an appointment within a couple days. Great. She takes my insurance. Perfect. Sounds too good to be true…

The first appointment was a get-to-know-you type deal. I filled out paperwork, which by now I can do with my eyes closed and left-handed, while holding my breath, upside down, and juggling fire. I really am that talented. But that’s another topic completely. Anyways, I felt like such a hot mess and was embarrassed of myself, considering this was our first encounter. I hadn’t eaten in days, I hadn’t slept much the night before due to pain, my coordination was off and I kept dropping things, my skin was flaring with this new rash that has decided to come and go from my face recently,  and my thoughts were racing all over the place with all the things I was trying to get done that day. Not the first impression I wanted to make.

Usually, I like to try and look my best when first meeting a new doctor. Doctors are people, after all, and people judge you. So I typically try to put on my best face, neatly groomed, makeup on, fake smile on my face, positive attitude… I want to be taken seriously. However, that didn’t happen that day. It was more of: my body hurts too much to shower today. I can’t wear make-up because this rash is burning my face. My stomach is swollen and painful, so I put on baggy jeans and a t-shirt. I have large, dark bags under my eyes from lack of sleep and nutrition. My hair has decided it doesn’t want to lay flat on the side where I lost a giant patch of hair that is now growing back awkwardly. I can barely fathom putting on any other shoes then flip-flops. I’m chugging a venti Starbuck’s coffee to stay awake. I look like I’m on drugs. Definitely not how I wanted to present myself. She asks me if I’m nervous, I look nervous. I explain I’m just tired and not feeling well today. She’s quiet for a moment. Then came the usual questions. 

  • “So why are you here today?”
    • “Well, I’ve been dealing with some health issues. Life’s been a little stressful lately. I just want to manage everything I’ve got going on. Maybe learn to have less guilt, be more assertive, and be less indecisive…” 

Damn. I can tell she see’s through my generic answer. This lady is smart. I fidget in my chair some more, trying to find a position that doesn’t make me want to vomit. What am I doing? I feel stupid. 

  • “Tell me more about some of these health problems you have going on.”
    • “Well, let’s see.” I list off symptoms: Chronic abdominal pain and nausea, I’m not digesting my food anymore, hypoxemia, livedo reticularis, nevus anemicus, IBS, alopecia, constipation/diarrhea, rectal bleeding, skin rashes, hives, pre-syncope, dysphagia, joint stiffness, asthma, allergies, abnormal menstruation, muscle spasms and twitching, abscesses, swollen lymph nodes, chronic infections, chronic fatigue, foot and height growth… “I’m currently undergoing testing and seeing specialists the last few weeks. It’s been crazy.”
  • “How long have you been sick?”
    • “I’ve had stomach trouble my whole life on and off for periods. Those periods usually didn’t last too long, maybe 6 months to a year. This current bout started 5 years ago, but just never went away. It just keeps getting worse.  Only got extremely bad since right around Christmas, when I started not digesting my food and my hair started to fall out. It’s been downhill ever since.”

I’ve told this story a million times before — to every doctor, to friends, and to family members – and yet it still sounds so ridiculous in my head every time.

  • “Nope, no answers yet.” “Yeah, all the tests are inconclusive or come back as normal.”

I feel crazy. I guess I’m in the right place. She asks about work, I fill her in on my short term disability denial. How I’m tired of always needing to prove that I am sick. She asks about my home life and marriage. My family. What I’m going to school for. Where I grew up. Etc. Etc. The appointment ran five minutes over. She walks me out, there’s another patient in the lobby waiting. I feel guilty for running late. She says that she’ll see me next week. I thank her for her time. 

In my head, I know she think’s I’m a nutcase. How could she not? I SOUND like a nut job. She probably thinks it’s in all in my head too. But she was nice and pleasant about it, at least. And her office was clean and comforting. Maybe she can give me guidance on how to navigate through everything right now. And while I do talk about my illness a lot, considering I’m always at a doctor’s appointment or getting asked about it, it’s kinda nice to have an outside perspective. And if my superhuman powers, like the ones I used for filling out the medical paperwork, are causing all of these crazy symptoms, then she can help me with that too. Plus, I wrote a paper last semester on the prevalence of suicide rates in relation to living at high altitude and one section was on the general risk factor in committing suicide among individuals who are dealing with chronic illness. I figured it couldn’t hurt, I was being proactive. Especially considering a friend committed suicide this past Halloween with no warning signs. So I go to my second appointment.

I felt better prepared this time around. I’m not such a mess. She says I look better this week. I tell her I still feel terrible, but my mind seems to be in a better place. She asks me how things are going? I tell her about all the appointments I’ve attended this week, the endoscopes, the esophageal dilation,  the new PCP appointment i had, and the fiasco with driving an hour and a half away to see the wrong kind of specialist my doctors referred me to for the Nutcracker Syndrome. I explain my usual day of coordinating my care, calling all over the state, scheduling this test or that appointment, dealing with insurance, and fighting with my current PCP to do anything. How I feel about not having a diagnosis. What I’ve experienced with my healthcare.

Oh, and I’m also taking the worst class. Statistics. Usually, I like school but this class is unstructured and a nightmare. I failed a test. But I’m grateful to have this opportunity. I can’t give up, not again. I wish I had more time so I could do better. I’m barely hanging on to a B.

I discuss the short term disability appeal I’m working on and talking to lawyers across the country who are interested in trying to help me win my case. But there’s the cost, not sure if it’s beneficial to hire one or not. Meeting one in Denver next week. I mention the struggles of not working right now. How could I though? Between all I’m doing, I’m barely keeping up. Plus, the symptoms have gotten worse so quickly. I don’t know when I should go back. I don’t have any answers yet, there’s still so many appointments. What if I am still too sick when I go back? I don’t want to lose my job. But there are bills to pay. It’s been almost two months without a paycheck. They offered accommodations that can’t help me in any way. I feel guilty for getting so sick so shortly after starting there, it’s only been 6 months. It’s always been manageable until now.

She is quiet for a moment and then she says she very sorry, she feels bad for me. I don’t want her to feel sorry for me. I don’t want anyone to feel sorry me. I just want people to listen. Simple.

She thinks that everything I’m dealing with right now, coming from the medical environment, is unacceptable.

  • “How do you do this every day?”
    • “I do it because I have to. There’s no choice. If I don’t, no one will. My symptoms will continue to get worse. Nobody will care or notice and I’ll be the one left to suffer the consequences. Plus, I deserve answers. I’ve been a good patient. I’ve been calm and respectful, even when I didn’t receive that in return. I NEED a diagnosis. I can’t accept that there’s no answers for me. My care has been negligent, at best. I’m fighting to get my life back. AND now it’s principal.”
  • “How do you handle all this stress, when anyone else would have broken down by now? You seem to be handling everything really well, considering. Really strong.”
    • “I’ve learned to function in chaos and I’ve been busy my whole life. That’s not the problem. Bad things happen. All the time. That’s normal. Me getting sick, isn’t really the issue either. It’s the lack of empathy, the lack of help and having to fight my way through this process when I shouldn’t have to. I’m on leave from work but I haven’t rested once. Instead of getting better, I’m getting worse because I’m constantly struggling with things beyond my control. Things that are unnecessary…” 

We discuss the time in my life where I learned to live and embrace the chaos, but that’s a story for another time. I barely touched the surface of that part of my life. Her eyes widened,  in shock. Again, she is quiet for a moment and starts to say something but stops. Our time was up anyway. She asks me if I want or need another appointment. I get the sense she was telling me I don’t really have to be in therapy, but she didn’t say it. I schedule for next week and thank her. As I leave, I feel validated. I do feel strong, considering. I’ve overcome a lot. I guess maybe I DO need therapy after all.

If you (or someone you know) are interested in talking with a therapist or counselor about the difficulties associated with living with a chronic or undiagnosed condition, you can visit the Better Help website to learn more on how to get started in online therapy.

Let Me Know the Struggle Ends

A few weeks back I had an abnormal CT scan of the abdomen and pelvis. FINALLY! GI doc said it may be causing some of the symptoms, all of the symptoms, or none of the symptoms. Sent me back to my PCP for a referral to Urology. I spent two days calling all over the state to get an appointment with someone who A) takes my insurance and B) can see me before the end of 2015. Found a place just over an hour and a half away but they could take me in a few weeks. Perfect. 

Well had that appointment today. As I mentioned in my previous post, this was one of the last hopes I had before hitting the chronic, undiagnosed illness wall…-again- Now, it’s hard enough to travel ANYWHERE beyond the corner store when you have a chronic illness. But my husband and I load ourselves in the car and start our adventure down South and up a mountain. GPS gets us lost and we end up in the middle of nowhere, over to east bumblefuck, and finally to the main highway up the mountain.  Rushing because they wanted me there 15 minutes early to fill out paperwork. We’ll be lucky if we make the actual appointment time. I call and luckily they are very nice. I HATE being late to the doctors, mostly because more than anything I hate waiting on them, so why should they wait on me? And make the next appointment wait. It’s just unfair… but I’m getting off topic. 

We finally make it, 1:30 on the dot. It’s a cute historic building in an old downtown, very small town, but adorable nonetheless. Good choice, Doctor. Classic. I’m promptly checked in. They ask me if I have records, they’ve been calling my PCP but no one would answer and then magically the fax machine is down… again… pretty much every day since February. My husband pitches in, “they’re useless”. He’s had the pleasure of attending my appointments these past few weeks. I think he finally sees my frustration. Good, I feel validated. I try to lighten the mood, “I’m actually looking for a new doc….” It’s not a lie. I just don’t have my hopes up anymore, but we’ll see how that appointment goes. I hand over my giant book filled with records from the last five years… tests, doctors notes, referrals, pictures… the ones that magically disappear in the faxing process. It’s easier if I do it myself, after all. I fill out my new patient paperwork and then we are promptly brought back to the exam room.

Almost immediately, the assistant comes in. He seems nervous. Was it my extensive organizational skills intimidating him? Or perhaps, it was all the tests with no answers and the copious amount of doctors that gave it a shot, minimally of course. Well, it was neither. He explains, he saw the CT report I sent in with the referral shortly before lunch. But they figured we were on the way already, not worth having us turn around, and now I am sitting in the exam room having already paid my co-pay. Although Nutcracker Syndrome does involve the left kidney valve, it’s actually NOT something they would see or treat. I’d actually have to see a different specialist. He takes my blood pressure. My husband’s temper is about to take off, I feel the pressure change in the exam room. He says the doctor would be happy to tell me what he knows about it and discuss the cyst on the left kidney as well. He leaves. My husband is not a very happy man at this time, after all the way we’ve come and what hope we had in maybe finding some answers. I tell him, “Well, we can at least find out if we need to worry about cyst and possibly a referral to the RIGHT specialist”. (Look at me being the positive one for once… again… my husband is no finally seeing how awful this experience is). 

The doctor comes in with a textbook. Here we go. He reiterates what his assistant says, this is not his area of expertise, BUT at least he knows what Nutcracker Syndrome is. He tells us the size of the cyst would cause no symptoms. Actually, it could be the actual size of the kidney and cause no problems or symptoms. Good to know. I learned ONE thing new today. He opens the textbook to a diagram of the veins surrounding the kidney. He shows me the renal vein and it’s relationship to the Superior  Mesenteric Artery and the Inferior Vena Cava. He put’s into plain terms. I get it, though. I’ve done my research. He’s chatting on about how it can be compressed and how sometimes that things like this can influence other things, I’m playing along. After a bit of time, I ask, “So I know the vein is still flowing but is dumping into my lumbar plexus, which is associated with nerve endings in the abdomen. Am I right? Could this explain some of my symptoms, or be related to the flank back pain and pelvis pain, which could ultimately influence my digestion or radiate pain upward?”  He’s onto me, he know’s that I know too much. He apologizes that he couldn’t be more help but he can send a note if the PCP needs to know why I need a different referral. Like they’d ever get the fax. But I thank him for his time. 

My husband drives us down the mountain and back up the highway to be home. He missed work for this and I have been on leave from work to get better. Another wasted day. Now I’ll have another full day of phone calling every vascular surgeon in the state to see who is accepting new patients with my insurance and see if I can get in before the end of 2015. Also, add another day of fighting with my PCP to get a referral elsewhere, which, again, I will not only have to find the specialist but fax my own records as well. 

I often wonder, after weeks like this, when is it time to stop searching for an answer? Maybe I should suffer through each day, slowly killing myself, for mediocre? It would be less stressful. I’m running out of time, I can’t NOT work forever. We’re not rich and I do like my job. Haven’t gotten a paycheck in almost two months. I’m still appealing. I can’t find a lawyer close to me to take my case. I’m having to drive an hour and a half away, in the other direction, to find help. Doctors, Lawyers, Everything is too far away when you’ve been so sick, let alone hours away. But it’s not going to get better, especially without a diagnosis. Or a plan. Or a gun. (just kidding). In all seriousness though, the true dilemma is finding a way to balance work, school, coordination of care, appointments, friends, family time, ME time, without sacrificing my health. It’s too fragile as is. I’m already paying for our trip today.

I know I need
To lift my eyes up
But I’m too week
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn

I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn”