Wednesday, May 14, 2014

Nothing short of a roller coaster ride

The title just about sums this post up.
I have been M.I.A. the past few weeks with more reasons than I can count on my fingers.

FODMAP diet? Basically went down the drain. I tried so hard to stay dedicated, but just like everything, I gave up.
I am in the process of starting small again. I am on day 1 of being gluten free(which is one of the most important steps due to my recent diagnosis of celiac disease). It isn't easy. It's actually quite hard-especially when your favorite foods consist of chicken tenders and everything fried. But what can I say, I am trying and will continue to do so. Anyone have any tips?

I spent two days in the past two weeks in the hospital-one for constipation-I didn't really need to go to the ER but my doctor suggested to do so to make sure I wasn't obstructed and the second for not being able to breathe. When I checked in my oxygen levels had gone down to 83%.

What did I learn from this? It is going to be a cruel death when it comes time to kick the bucket.
I know, I know, I shouldn't think like that. But when you literally feel like your drowning and can't find air, it is an unpleasant feeling. Luckily after oxygen and 4 days of sleeping, I am finally feeling a bit better.

Yesterday I had a gastric emptying study. I have yet again lost the ability to want to consume scrambled eggs. I don't know how they manage to make them so unappetizing, but just the smell of them is enough to make me want to vom.
Luckily, I was able to keep them down and will hopefully get my results next week when I visit my GI doctor.

Life has been super busy.
It makes me wonder if I will ever have time in my life to do things important to me like take a nice vacation, get married, maybe even have a baby.

But for now I can only take life one day at a time.

Saturday, April 19, 2014

An almost week on zoladex

So it's almost been a week since my first zoladex shot.

The first day I was fine.
The actual place where they entered the shot was a little sore, but no symptoms.

Wednesday, I had my first hot flash.
I was pretty sure I was going to die.
KIDDING, but for real, it was terrible.

Thursday is when I started with real symptoms.
I can't even explain what's wrong-it's like my brain is telling me that I am in pain, but if you were to ask, I can't tell you what hurts.
I am also speaking jibberish. Not sure if this is related-but I cannot really process what is happening.

I also have NO appetite and plenty of nausea to go around.
I've been miserable.
I eat and then I get sick, or I don't eat, and then I get dehydrated and light headed from not eating so I still feel bad.
There's no win.

The worst part about it all is that it's not like when I went through my infusions and the first 3 days sucked, but then I get better. No, this one works the opposite in the fact that I will keep getting worse.

Oh well.
Other than that, nothing is really new.
I still need to schedule my gastric emptying study but I am having a difficult time with scheduling it.

Write again soon.

Wednesday, April 9, 2014

The road I travel must be a dirt road....

Did you find the title of this entry clever?
That's how I feel about right now. I feel as if my road is bumpier than an average road, there are many obstacles in my way and as soon as I feel like I am on a straight-away to feeling good, I hit a huge pot hole.

This pothole is probably one of the biggest.
As many of you may know, I have been battling a mass on my ovaries since August 2013. I have gone to countless doctors, had multiple ultrasounds, and tried countless therapies to fix it.
I had finally hit my breaking point, when the doctor mentioned the magic words "surgery".
This is what I had been waiting for, I wanted this more than anything. To have this mass removed and to feel better. The doctor said I just needed one last ultrasound and then I just be cleared for surgery.

That last ultrasound opened a door that I never saw coming.
I got a call, saying I needed to go to an oncologist.
Everyone knows what kind of doctor this, and everyone knows when you are referred to one, it's never a good thing.

So, with my head between my knees, I called the oncologist and got an appointment for 4/8.

The overall appointment seemed positive.
What is the doctor's approach.
Medical menopause.
That's right. I am 21 and will be going through menopause all at the same time.

Sounds like a good time?
Yeah right.

I will go into the office every month, starting 4/15 and receive an implanted injection called zoladex.
Research it.
I am not excited about this.
I do not want my bones to hurt, or to be even more tired than I already am, or being moody.
Ok that's all of my rant on that.

The GOOD news about all this?
1-With going through menopause, the doctor believes my pain will subside.
2-This will prepare me for surgery, and will make the doctor more comfortable with taking out ovaries if necessary.
3-The medicine used to put me through menopause is actually used to treat certain forms of cancer, so there is a CHANCE that the medicine can actually help my cyst.

The NOT SO GOOD news about this?
1-Bloodwork every two weeks to monitor my hormone levels and my CA125.
2-Menopause at 21. (except not having periods, that'll be nice).
3-The doctor does have reason to believe that there is cancer, but believes that we have enough time to do these steps first before the surgery.
4-The fact that if this doesn't work, I will still be in pain.

So there it is. My big news. Not the easiest for me to swallow, but to me, it seems to be just another pothole and I just have to keep driving.

Thursday, April 3, 2014

One week in the bag!

I am writing today on a very positive note.
I successfully made it one week without ANY gluten!

That wasn't without temptation.
I had to watch my boyfriend eat a delicious cake, my friends drink beer, and the temptations at work were unbelievable.

But after a week, I made it through.
The cravings are slowly going away and I am starting to feel like a normal human being again.
I don't expect to automatically feel better after a week, especially since I have had some major dairy slips, but I am feeling improvement.

I wake up feeling alert and go to bed never feeling overly tired.
I feel energized and active to the point where I was able to stop relying on caffeine.

So will I stick with it this time?
It's very much possible. The change may be worth giving up the nuggets and doughnuts.

On a side note-I had what was supposed to be my final ultrasound on Monday before I was to be given a surgery date. I've called the doctor's twice to receive the results and I am still waiting. It makes me nervous, but I know there is nothing else left for me to do except for wait.

That's all for now,

Wednesday, March 26, 2014

Accepting the changes

I have to be honest for a quick minute.
I hate change.
I despise going to the doctor's and my medicines changing, or there's a new study, or they think I have just eliminate this, or add some of this to my diet, I will see some changes.

So as to no surprise, when I first heard that I needed to begin eating the FODMAP diet for my entirety(instead of just doing the essential diet, and then going through the challenge phase), I was more than a little disturbed.

How are you going to tell a recent 21 year old that everything that she envies in food-doughnuts, chicken nuggets, everything fried and covered in grease, is a no-no?

At first, I said too bad. I wasn't going to follow it. The doctor's could kiss my butt. I would try to do FODMAP-and I would fail by lunch-time, and then over indulge and candies and chocolates and everything fattening in the world.

But after my endoscopy, I learned some disheartening results. Because I chose not to listen, I have now developed celiac disease and the bacteria that was once growing in my stomach, is now all up in my esophagus and wrecking my body. So the doctor gave me the option. I could continue how I eat, and remain in pain and cause my body more harm, or I could get over my stubborn attitude and actually follow their advice and maybe gain some relief.

So now I sit here. Spending my time researching, studying, reaching out to fellow FODMAP foodies, and trying to learn more about this way of life and figure out how to follow it.

As of right now, I am on Day 2. Yesterday seem to go fairly well-I had to splurge and eat some cheese(ok-so I didn't have to, but I didn't prepare in advance so I had to eat what I have) but it seems to go fairly well.

This morning I actually woke up on my own, without my alarm, and with full alertness and energy which hasn't happened in I don't know how long.

Will I stick to it? I can only hope. I only have so many options left.

Know anyone on the fodmap or have tried it before? Let me know!

I will post a picture of what exactly the fodmap is so everyone can have a little glance!

Friday, March 7, 2014

Updating when there's no new news

I find it quite difficult to post when there is nothing to share with the online world. How's life you ask? Work seems to consume my life-I am back up to 40 hours a week and I also got a promotion to be a case manager assistant. This was so exciting to me and it has been awesome to begin  my journey.

As far as health goes, I seem to be doing ok. Routine and mental health seems to effect me more than normal. Although I am not seeing as much progress as I would like, I am overall feeling better. I had an endoscopy done yesterday-it showed some nodules, some plaque, and an even possible fungal infection. I am never surprised when I hear news like this. I even made the statement yesterday that I "always awake to bad news". It doesn't seem like something that I should grow comfortable with, but it is never changing. I hope and pray for good news, but as the saying goes, I always tend to plan for the worst. I should get the biopsies back within 2 weeks and then hopefully we will have a better understanding of what is going on.

I'll write again soon.


Tuesday, January 28, 2014

Finding a balance

There isn't too much new in my world. I have returned to work-but due to some work conflicts, my schedule is out of wack and I am only working 2-3 days a week. Between work and having at least one appointment a week, I am finding it hard to balance a normal life. Sure 2-3 days a week doesn't seem like much, but it always seems to be the most inconvenient days. Not to mention, the hours have changed and now I am getting home at 5:30 instead of 3. That creates a huge difference in my schedule. I am bed by 7 pm on working days and I just can't seem to get everything done.

As far as health, I am so-so. I went to an endo specialist for the mass on my ovaries, only to be directed to another specialist. That appointment isn't until February 21. So between now and then I sit in more pain than imaginable and try to continue with my daily life. I am also awaiting many test results that will hopefully help explain my right flank pain. Will there be surgeries in my future? Who knows. For right now, I can only take it day by day and hope for the best.