Another Year Gone

It’s funny how slow time can be, but before you know it, another week is gone, then a month, then a year.  We are slowly meeting our 1 year anniversary of living in Kentucky in a few weeks.  This also means it’s my 1 year anniversary of seeing Ky doctors for all of my Crohn’s issues.
This means that a year has passed since my last surgery, the Fistulotomy, and I still have nothing working for me. This means a year of no symptoms helped, only more added to the list.

When I look at my doctor binder I keep, I have had roughly 25+ doctors appointments in the past year in Kentucky, with 5 more scheduled for the next 5 weeks.

I have 5 appointments, with 5 different doctors, at 3 different locations in 2 states, for 5 different problems, in the next 5 weeks, that are all probably Crohn’s related.

It is exhausting, as I’m sure I’ve said before, trying to get paperwork and consults, and scheduling for all of this, and trying to keep track of all that.

 

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This week I received feedback from ALL of my samples and blood tests that were submitted the last couple of weeks.  Stool OVA and Parasite exam, C-diff and Celiac panel, cultures and Calprotectin.  All tests show negative or within the normal range, which really makes no sense.  You’d think something other than the Capsule would show a problem in my stomach. But, I’m not alone, I found a forum with Healthline about IBD and testing negative & Crohn’s Forum.

But, there is no specific test for Crohn’s Disease, and inflammation could be happening at the wrong time for testing these things.  I feel like they should just put in orders for these tests, and whenever  I feel my worst, then I could come in to do the testing then and there.

Stoolsample

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This Calprotectin shows normal, but the numerical range was considered ‘borderline’.  Re-testing in a few weeks.

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I found a typo: ‘next stope”.  I’m thinking Dr. R was thinking about scopes, as in colonoscopies, when he was writing ‘next steps’.

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The plan is to go ahead with the Capsule Endoscopy this Tuesday, bright and early at 6:30 in the morning.  My 4th of July celebration gets to consist of a liquid diet on the 4th, and the pill camera on the 5th, with the chance of a Urologist telling us we have no chance at conception at all, but we will see what that new doctor, Dr. D, has to say. (See Scheduling, Scans, SamplesSo You’re Sayin’ There’s A Chance? & No Little Lambs For Mary)

But, every day is another day closer to seeing Def Leppard, too! Gotta find the positives in these situations. I know I promised myself no more appointments on holidays, but to be fair, this had to happen in a matter of a few weeks, before the Double Balloon. (See More Tests for Mary My Crohn’s Journey)

I’ve been focusing on blog traffic this week, search engine optimization and managing views. I created some new images for future blogs and a new header image for the blog, which was much harder than it sounded.

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On Wednesday, I managed to cut myself cooking dinner.  I went to cut a cantaloupe, and about sliced my finger off. Just kidding, but it is pretty nasty looking.  The perks of having a doctor for a father-in-law? You are always prepared for minor fixes at home.  Bandages, check.  Gauze, check.  Groovy patterned medical tape, check, check, check.

So instead of just wrist pain, I have to be careful to not use this finger at all.  Good thing it is on my left hand, or else I would be making a permanent ‘Loser’ sign if it were my right.

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I’ve been trying to wear my braces as much as possible, at least my right one, but I have to take it off often to stretch my hand, and I end up taking it off at night because it starts to ache and wakes me up.  In between thumb pain and stomach cramps, it’s a wonder I ever sleep.

I about had an outrage with the fertility doctor’s office on Thursday.  Philip and I were trying to ‘schedule’ the IUI, without really having an exact date.  When I called Dr. A’s office, the secretary, Charity, told me that her office ‘No longer offered the IUI procedure, at all’. (See So Your Sayin’ There’s A Chance?)

I tried to explain to her that I was a patient under the Veterans Choice Program and that I had been referred to Dr. A, and we had planned for September, together, the three of us. Charity told me that they were sending all of their patients to a different doctor, and that a consult would be needed for the new doctor, that I would have to be seen there for everything now.  She also noted that a consult alone could cost $300 – and I told her that was NOT happening.

I questioned her information, I had to be sure.  If IUI was not offered at this office, then there was no need for me to EVER see Dr. A again.  Dr. A was a referral for me from the VA in the first place, she was not my chosen Gyno.  I tried to re-explain my situation, the VA, our referral process and what was covered, but she was not understanding, much like anyone outside the system.  The VA healthcare system is not an easy one to understand.

She told me I was going to have to have everything re-done, with the new doctor, and that our plan for September may not happen during that time.  I explained I had all my testing done less than a month ago, so it was all current and I told her that she needed to send the results out with the referral, but she couldn’t do that without my signature on a form.

I suggested coming in and signing the form or obtaining my records myself, and she said that she still wouldn’t give them to me.  I was livid and confused, because we had just planned all of this, not two months ago, and I had already had all the appointments I needed this far.

She went on to try to explain how I was supposed to use my Clomid, something I am already familiar with at this point.  I went ahead and told her to start the process for the referral, because now I had intentions of calling the VA immediately to let them know I needed another consult, with another clinic, and that our plan had just been crushed.  Trying to explain this to the VA and Choice Program was going to be hell, and it was going to take forever for new referrals, new consultation appointments, and a new plan. I was in a crying fit.  I already have enough appointments, I do not need more, and I did not want to restart this process.  (See Infertility is a Sadness Infertile Myrtle)

Charity apologized for the inconvenience, but how do you explain the feeling that your fertility doctor is breaking up with you, just two months before you start making a baby together?  I know it sound’s crazy, but it’s true.  We had MADE a plan with her, and now what?  I wasn’t supposed to get my hopes up, but how could I not?  Philip and I both really liked this doctor, and now she doesn’t offer IUI?

Immediately after I got off the phone with Charity, Dr. A was calling me back.  Charity had told her that I was very upset about the information, and Dr. A had to fill her in.  Charity’s information was incorrect, and she was unaware of our plan with Dr. A.  Dr. A reassured me that our plan of action was still the plan.

There were no changes, and she was still doing our IUI, and the only think I needed to worry about was calling when my cycle was ready.  Charity had no idea what is going on, thank goodness.

Another gem from UK hospitals right after Charity’s confusion?  I get this in the mail today:

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Clearly, I am the wrong audience for this type of mail, as we are still in the process of making this happen. Thanks, but it’s too soon.

In other news, Philip will begin using his last couple of months of GI Bill available, for Baby Horsley Fund use.  He finished his degree with the GI Bill, but somehow managed to still have some remaining time to use.  We will use that BAH (housing allowance) for some of the IUI costs – our way of having the military pay for the IUI since the VA doesn’t cover it for us.  His left over BAH could potentially cover 4 cycles of IUI if necessary.  Take that, VA! – More info on VA Treatment .

Product reviews are coming soon, but not so much to bombard you. Some I will do for free, and some I will be paid to do.  Exciting times for It Could Be Worse!

 

 

  • AN UPDATE ALREADY? I’M A WINNER! Like I mentioned in a previous post, I never win.  Winning the t-shirt in More Testing was very exciting for me.  It turns out when I joined the Fun–Run and 5K with Cure For IBD and Chris Pedicone, I won another shirt!!!!

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Friday Photo: Philip’s birthday 4 years ago!  Forever perfect dance partners.

Photo credit: Trevor

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For more information about infertility and the VA, please visit Resolve & VA.Gov

More Info On Crohn’s Disease at www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com

Also on Huffington Post

Previous Posts: The Young Can Be Barren

Scheduling, Scans, Samples

So Your Sayin’ There’s A Chance?

No Little Lambs For Mary

Infertility is a Sadness 

Infertile Myrtle More Tests For Mary 

My Crohn’s Journey

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4 Comments Add yours

  1. Stephie says:

    Our doctors are able to pick up inflammation via markers in our bloods. Is this not something that they aren’t checking with you?

    Like

    1. No, they have checked my blood numerous times, but they have never shown anything, oddly.

      Like

      1. Stephie says:

        That’s weird. My inflammation markers go through the roof when I relapse. Hopefully they will give you answers soon.

        Like

      2. The only thing to ever show a problem for me was the capsule in January. Maybe its Meckel’s.

        Like

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