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”

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