Be Strong, Believe…

Today was a good day.

I felt sick last night.

So sick, that in fact I wasn’t able to sleep for more than a few minutes.

That’s because I ate food

(chicken noodle soup)

so I would have energy today.

To go back to work.

The stress about going back probably didn’t help.

I was tired and scared.

But I went anyway.

My co-workers and friend were excited to see me.

So was my new manager and team.

Everyone visited me during their breaks and sat on my desk.

Everyone said I looked good today.

Granted, I had a lot of make-up on to cover up the lack of sleep,

the lack of nutrition, and the illness that shows my face worn.

But it was nice to be missed.

I felt nauseated and sick ALL day.

I had bad cramping, a good amount of bleeding.

My legs and feet hurt because I haven’t walked that much in weeks. 

Months really.

It was cold out.

My joints hurt. My rashes were prevalent.

My mind was moving slow and there is so much new that I have missed

while I was gone.

But I made it.

I didn’t die. I’m still alive.

It’s still going to be an adjustment.

But today was a good day.

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”

Say Something, I’m Giving up on You

Why is finding a new primary care doctor an impossible task?

I often wonder if it’s just me that has a problem with finding a reliable doctors. Perhaps it’s due to having a chronic illness? But I have no trouble when it comes to finding good specialists (although they take a while to get into) and others living with chronic illness have found great doctors along the way to take over their care. Maybe it’s because I’m “undiagnosed”. Who knows?

The worst part is I’ve experienced some new symptoms (facial flushing, random and quick onset of extreme burning from within my skin, and olfactory hallucinations) and I think I  have an idea of what’s wrong with me. But I have NO ONE to talk with about it. My current PCP blows me off and thinks I’ll never get a diagnosis because I MUST have a rare disease that only me and maybe one other person have, which is crap. And the specialists only want to discuss specifics to their specialties, so off I went trying to find a new primary care doctor.

Considering my past experiences with primary care doctors, I tried to do as much research as I could before selecting who to call. I made a list of potential doctors from my insurance provider’s website. After reading reviews online, I settled on two places. Doctor A was able to get me in for an appointment in about two days. Doctor B didn’t have anything open for two weeks. Well, it’s a start.

Dr. A came highly recommended and his specialty was internal medicine, which is supposedly ideal for patients managing chronic conditions. Considering he was the first appointment and able to get me in quickly, I had high hopes that he’d be the perfect doctor for me. I had just recently had the abnormal CT scan, so I was looking for a referral and just a general get-to-know you meeting. I brought all of my records, which are currently filling a two-inch binder  to the brim. Needless to say, it is quite heavy to carry around. His office was located in the main hospital downtown, which takes me about 20 minutes to get to (which is still better than driving hours away for my specialists). I drive around for another 25 minutes; there is no parking in the hospital lot or anywhere even close to it. I  give up and drive down side streets, parking in the first place that isn’t blocked off – two miles away. As if being dizzy and nauseated isn’t enough on the hike to his office, the binder of medical records feels like it is going to break my arms. I’m barely hanging on to the thing, trying not to pass out, as I finally head up the elevator to his office. All I can think to myself is, how in hell would I even be able to pick up my prescriptions with  the location of his office. It would definitely be a workout and not something that would make getting my care managed any easier.

I step inside the clinic and the receptionist greets me rather quickly. She get’s me all the paperwork and I’m checked-in rather quickly, especially seeing as the entire waiting room is full of people. I sit in the one empty chair on the other side of the waiting room, which technically is meant for a different practice, but I didn’t care considering the work out I just had. Within 5 minutes, they call me back to the exam room. I’m actually impressed. The nurse takes my vitals and history, which of course is extensive, and the doctor knocked on the door to see  when we’d be done. Wow, I’m not waiting on the doctor, he’s waiting on us. Excellent. He introduces himself and sits down to read my charts. I try to give him a little history, but he doesn’t seem interested in really knowing the answers. Strike 1. He asks me why I’m here. I tell him I’m looking for a new primary doctor to coordinate my care and I need a referral to a specialist because I had an abnormal CT scan that is showing Nutcracker Syndrome. He asks me if I have said CT scan report, which I don’t, because my GI doc sent it to my current PCP, who of course can never can keep their fax machine working. So I explain they’re mailing me a copy but it hasn’t arrived yet. He begins to talk bad about the hospital in Denver and how it has to be their fault my current PCP didn’t receive the report. I’m surprised, considering they are the only people have even remotely tried to find out what is wrong with me and communication with them has been the smoothest I’ve dealt with so far. Not to mention my current PCP’s long history of incompetency. Strike 2.  After discussing the scan, he begins to argue with me that Nutcracker Syndrome has nothing to do with the kidney vein and that it only has to do with the duodenum. NOT TRUE. While what he is talking about does sometimes get the nickname Nutcracker Syndrome, OFFICIAL Nutcracker Syndrome is directly about the renal vein. Even Google can tell you that. Strike 3.  I leave and make the two mile trek back to my car, exhausted. A week later Dr. A’s office calls for a follow-up appointment, but I declined. I was disappointed, but knew I had an appointment with Dr. B coming up in a couple of weeks.

The following day after appointment with Dr. A, Dr. B’s office calls asking if I can change my appointment to the next day. They didn’t really give a reason as to why, but I had nothing scheduled so I obliged. What’s one day? I’ve only been suffering for many years now anyways. What could it hurt? Appointment day finally arrives and luckily their office is in a slightly more convenient part of town. I pull up and there is TONS of parking. Thank god. I carry my massive binder full of records inside and was impressed with how clean and nice it was inside, considering it was a family practice. Everything was brand new and there was only one other person in the over-sized waiting room. The receptionists are overly friendly and they get me checked in rather quickly. After filling out my paperwork, I take a seat. Within 5 minutes of my arrival, a man comes out of one of the exam rooms and begins screaming at one of the receptionists. “He has to get to work”. “He’s been sitting in the room for over an hour”. They offered to reschedule him since he had somewhere to be, but he complained that it took him three weeks to get this appointment. “He needs to be seen NOW!” I thought the receptionist actually handled him rather well, considering he was inches away as he yelled in her face. Ridiculous. I always laugh at these patients as they obviously aren’t suffering from any type of chronic illness and actually think they can get in and out quick. Good luck. He finally realizes that his yelling isn’t helping to move things along any faster, so he surrenders himself back to his exam room.

As I wait, I’m organizing my medical notes, as they were a mess from so many doctors digging through them, picking and choosing what they thought to be relevant. Time goes by and I start to acknowledge the wait really does seem kinda long. I look at the clock. My appointment was at 10:00 AM and it’s now 10:45. The couple in front of me is just now getting called back. Uh, oh. I try remain patient but by now I’m starting to get a little mad and I am out of things to do.  I contemplate leaving, but know it’ll be weeks if I have to try another office. Plus more research, more phone calls, etc. I think hey, maybe it’s an off day. It happens. Finally at 11:15, an hour and fifteen minutes PAST my appointment time, the nurse takes me back. Strike 1.

The nurse apologizes for the wait, it’s been a crazy “weird” day. OK, it happens. I look around, she hasn’t changed the sheet on the bed yet. Um. OK. What else hasn’t been cleaned? Gross. She starts off by asking me what medications I’m currently taking. I have a list, but she just wants me to tell her, so I do. Granted, it’s not the shortest list, but it took her 30 minutes to put it into the computer. Really? I tell her she looks familiar, like I’ve seen her before, which is true, but I’m also baiting to see if she’s a newbie. She says she has worked in multiple medical offices before, she names them (none of which I’ve been to, thank god) but has been at this clinic over a year. So nope, not a newbie.  She finally gets around to taking my vitals. My blood pressure is too low to read. Odd. She tries again, but it still seems real low. She gives up, says she’s having a bad day, and tells me that the doctor will be in shortly.Strike 2 . So again, I wait.

And I wait. And I’m pacing around the room because I’m tired and nauseous and I’ve been stuck in these uncomfortable chairs for too long. Just as I’m starting to feel trapped in this tiny room, the doctor walks in. Again, she’s apologizing for the wait. I say it happens. She’s an older, hippie looking woman and tells me to just call her Betty. OK Betty. She asks me why I’m in today. I explain I’m looking for a new PCP who can manage my care and I need a referral for the abnormal CT scan. She starts asking me my history and symptoms, but as I go on , she tells me to hold up. That’s too much for one visit; like I expected her to perform a miracle and fix everything right here, right now, and with barely any history. But she’s at least nice about. She pulls back my sweater to get a closer look at my shirt, “Oh I just love your top. Did you get it at a head shop?” We’re in the middle of an exam, if you can call it that. And I mean, it is kinda boho/indie in style but no. “Nope, just at a boutique downtown.” She explains she loves that kind of style, she lived in Manitou Springs for a long time. Yup, definitely a hippie. (Look up Manitou Springs if you’re not familiar. It’s one of my favorite towns in Colorado, but full of some special people for sure.) She tells me to give her a week to go through my giant binder of records, which she wants to the receptionists to scan, and she’ll call me to do a referral and set up a “real appointment” or whatever that means. 

She hands the binder over to the receptionist, who surprisingly didn’t have the look of death or hate on her face when she see the amount of documents she is going to have to scan. Dr. B hugs me, says she’s sorry I’m sick, that we’ll get answers, and she’ll call in a week once she has reviewed everything. She thanks me for being one of the “nice” patients. Um, OK. You’re welcome? It takes the receptionist about 30 to 40 minutes to scan my documents and I walk out of the clinic at 1:55 PM. Had I really been there for almost 4 hours?!?!?!?  When I left, I wasn’t really sure how I felt about my experience. It was a LONG wait. But they were nice and it honestly wasn’t any worse than your current PCP, who also makes you wait hours at a time. They didn’t even do an examination. But she wants to see all your records, maybe she is just thorough. She seems like she wants to help… maybe? I decide to give it until she calls me to see how I really feel. It’s only a week, after all, and I’ve been sick for years. What’s another week? 

So I saw Dr. B on Thursday, April 23. When I hadn’t heard from her by the following Thursday, I decided to call this past Friday morning for update. I’m on hold for about 10 minutes when it’s automatically connected to voice mail. I leave a message and go about my day. By that afternoon, I hadn’t heard anything, I assumed they’re busy, but I just want an update so I called again to make sure they received my message. At least some reassurance Betty is working on it and remembered me. I get the receptionist this time, she states they did get my message and the doctor has been really busy but will call me later. OK, no problem. Doctors do get very busy. I get it. I don’t get a call and then it goes into the weekend. This morning I call and leave another message. No call back. Strike 3.  I’m going to call on Wednesday, since tomorrow I have my surgery. But if I do not get a call back then, they’ll  have a message from me asking them to destroy my medical records. I’m over it, I get inadequate care from my current PCP, and at least then I don’t have to start completely over again. It’s just so very frustrating. And huge waste of what little time I have currently.

Shortly after all this mess, I was browsing around on Pinterest when I came across a meme from The Doctors TV (posted above) saying Don’t be Afraid to “Date” your doctor. Oh my god. That is exactly what the search for a new PCP is like!!!! Especially when you have a chronic illness. I guess in some ways it IS  like entering a relationship with your doctor, considering the amount of time and trust you build with one another. And breaking up with your doctor is almost just as hard, given the past you have built with them. Even if you know it’s best for you both to cut ties with one another, it doesn’t make the process any easier. You just get pushed back into the “dating pool”.  I know ultimately I  do need to find a new primary doctor, but as with any relationship, I’m not going to settle down with just anybody and keep repeating the past. I don’t expect my doctor to be perfect, but I do expect some level of respect. I know I’m a lot to handle, in both relationships and medical care, but I know there is someone out there better than this for me and my illness.

There’s plenty of doctoral degrees in the medical care “sea” and I’ll keep waiting for the perfect catch. 

Say something, I’m giving up on you
I’ll be the one if you want me to
Anywhere I would’ve followed you
Say something, I’m giving up on you
And I…I’m feeling so small
It was over my head
I know nothing at all
And I…will stumble and fall
I’m still learning to love
Just starting to crawl
Say something, I’m giving up on you
I’m sorry that I couldn’t get to you
Anywhere I would’ve followed you
Say something, I’m giving up on you
And I…will swallow my pride
You’re the one that I love
And I’m saying goodbye

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”

Even If It Kills Me

This week has been a very hard week for me.. Too many things going on, the world is spinning around me, and I’m trying to hold my ground. I honestly have so much to say but don’t even know where to start. So until I can organize my thoughts, I figured I’d just give the latest update.

A) It’s finals weeks. I feel lost and unprepared. It’s partially my fault for having this much going on at one time. But it doesn’t help that this class is unorganized and doesn’t teach us nearly anything for the tests. I’m frustrated to say the least, but luckily it’s almost over and I can move on to better things.

B) Got a recommendation from the Nutcracker Syndrome support group for a OB/GYN who has experience and knowledge about NCS and how it relates to women’s health. Since this has ALWAYS been a problem, decided it was worth meeting with him to get a second opinion. Plus he is close to my house and I don’t have to drive hours away. He reviewed my history and my current symptoms. Ultimately, he recommended endometrial ablation to stop the bleeding and blood clots, as other birth control has not been able to even touch it. I have my pre-op appointment with the hospital this Friday, then my pre-op appointment with the doctor on Monday, and finally “surgery” Tuesday. Hoping this can eliminate some unnecessary pain that I’ve had and it’s always possible that it is impacting everything else as well. So we shall see. If the procedure doesn’t work, which it’s about 90-95% effective for most women, then the next step is a full hysterectomy. 

C) Had a follow-up with my gastroenterologist. I was worried as the endoscopies came back normal, that it was going to be the end and I’d still have no definitive answers. And I was still waiting for answers about what, if anything, the biopsies showed. Well, the biopsies came back normal. No surprise there. She did ask if I had found a specialist for the Nutcracker Syndrome yet. Told her my PCP sent me to urology, who told me I needed  to see a vascular surgeon. I explained the issues I’ve had with my PCP, how she’s given up on me and seems irritated that I’m seeing them when she had told me that I should just accept that I may never get a diagnosis. I also let her know that I’m looking for a new doctor and that I had met with one, but she’s reviewing my health records first before she’ll order anything (and is supposed to call me at the end of this week). You should have seen my GI docs face, she was definitely not amused. “They have to review your files? To what, see if they want to be bothered?” I joke that Colorado Springs is a very Medicaid unfriendly town. (even though I have the buy-in program for adults working with disabilities, it’s still billed under general Medicaid). She sends a referral over to another hospital in Denver, says to give them a couple of weeks to get me updated into their system and then they should call to schedule. It’s a start. She does her exam. I’m painful from eating the first real meal in over a month two nights before. I assumed there wasn’t going to be much else to do at this point, but she decides to order more tests. 

  • Gallbladder Ultrasound
  • Gastric Emptying Study
  • Impedance and pH Testing

So, I guess I’m not finished. While its good she’s not giving up on me, I was fully ready to be done with testing out-of-town.  We’ll follow-up again after the next rounds of testing. When I call to schedule the test, the scheduler made me laugh because it took him forever to coordinate everything. For the Impedance and pH test I need tubes to be placed for 24 hours, down my throat and into the stomach. He looked at all the tests ordered prior and what else we still had to schedule. He’s keeps telling me I’m brave. He would never, ever be able to do all this. I must be nuts. At least it makes me feel better since it took 45 minutes on the phone to schedule.

D) After the GI doctor, went to meet with a lawyer about my short-term disability appeal. I was fully ready to hand over the reigns to someone else, but unfortunately that is not what happened. Don’t get me wrong, he was the nicest, most straight forward and honest lawyer I have ever met. Fully capable and qualified to handle my case. But the time frames to fully prepare my case would be at a minimum of 6 weeks, longer if necessary. It’s like going to war. And most are handled for long-term disability disputes, which if they went that route, then it could take years. Problem is, “no-one gets denied for short-term disability”. So they fight the long fight. Based on my case, my chances of winning the appeal are 50/50, because they’ll look for anything to deny me due to chances of a long-term claim. That’s not what I wanted. I WANT to go back to work. I just wanted to get these tests done and have treatment so I can function at work and not miss any more time or lose my job. So he gave me a lot of hints to finish the appeal by myself and I can always hire him for the next appeal or lawsuit if need be. I appreciated his help, but it didn’t give me any relief. I’m gonna finish up what I have and hand it in but more than likely, I’m not going to win my benefits back. And even if I do, the insurance company will drag it out, so it’ll probably be over 90 days after they receive the appeal. So, now I have to figure out HOW and WHEN to go back to work, as I can’t survive without a paycheck forever. I just don’t know how this is going to be possible? 10 hour days! Especially with my “accommodations” back to work. I need to at least wait until after my surgery next week. 

So this is where it all lies currently. The appointments will probably not be ending any time soon. Neither will the testing and procedures (I’ll post some pages with info about the procedures I’ll be having once I have some extra time). I need to find a way to balance going back to work and sustaining my job, keeping up in school, and managing my illness. It’s bittersweet at this point, but there’s no other choice. I’ll do what I always do, I’ll suffer through it all and sacrifice my health. But hopefully it will be all worth it. If only I could get REAL answers and a DIAGNOSIS, so I can FEEL BETTER and get on with my life. I miss LIVING life. But it’ll get done, even if it kills me.

“I’ve got a lotta things to do tonight
I’m so sick of making lists
Of things I’ll never finish
I’ve lived here for the last 12 years
Since early 1995 all my shit has been in boxes
But if I had a little more time to kill
I’d settle every little stupid thing
Yeah you’d think that I would

But I’m too tired to go to sleep tonight
And I’m too weak to follow dreams tonight
For the first time in a long time I can say
That I want to try to get better and
Overcome each moment
In my own way

I wonder if I’ll ever lose my mind
I tried hard for awhile
But then I kinda gave up
Winter is a killer when the sun goes down
“I’m really not as stubborn as I seem,”
Said the knuckle to the concrete

But I’m too tired to go to sleep tonight
And I’m too weak to follow dreams tonight
For the first time in a long time I can say
That I want to try to get better and
Overcome each moment
In my own way

I’m not saying that I’m giving up
I’m just trying not to think as much as I used to
Cause “never” is a lonely little messed up word
Maybe I’ll get it right some day
For the first time in a long time I can say
That I want to try
I feel helpless for the most part
But I’m learning to open my eyes
And the sad truth of the matter is
I’ll never get over it
But I’m gonna try
To get better and overcome each moment
In my own way

I so want to get back on track
And I’ll do whatever it takes
Even if it kills me”