tag:blogger.com,1999:blog-79612003362845477162024-03-04T22:04:58.283-08:00Daily FightingThis is just a story of the average 21 year old.I'm a full-time student,a girlfriend, a daughter and a sister, and a case manager at a rehab. But on the inside, I'm fighting for air as I beat Cystic Fibrosis.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-7961200336284547716.post-79601894044225892312014-05-14T13:02:00.000-07:002014-05-14T13:02:42.712-07:00Nothing short of a roller coaster rideThe title just about sums this post up.<br />
I have been M.I.A. the past few weeks with more reasons than I can count on my fingers.<br />
<br />
FODMAP diet? Basically went down the drain. I tried so hard to stay dedicated, but just like everything, I gave up. <br />
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?<br />
<br />
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%.<br />
<br />
What did I learn from this? It is going to be a cruel death when it comes time to kick the bucket.<br />
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.<br />
<br />
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.<br />
Luckily, I was able to keep them down and will hopefully get my results next week when I visit my GI doctor.<br />
<br />
Life has been super busy.<br />
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.<br />
<br />
But for now I can only take life one day at a time. Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-78588922837486607172014-04-19T07:10:00.001-07:002014-04-19T07:10:30.139-07:00An almost week on zoladexSo it's almost been a week since my first zoladex shot.<br />
<br />
The first day I was fine.<br />
The actual place where they entered the shot was a little sore, but no symptoms.<br />
<br />
Wednesday, I had my first hot flash.<br />
I was pretty sure I was going to die.<br />
KIDDING, but for real, it was terrible.<br />
<br />
Thursday is when I started with real symptoms.<br />
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.<br />
I am also speaking jibberish. Not sure if this is related-but I cannot really process what is happening.<br />
<br />
<br />
I also have NO appetite and plenty of nausea to go around.<br />
I've been miserable.<br />
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. <br />
There's no win.<br />
<br />
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.<br />
<br />
Oh well.<br />
Other than that, nothing is really new. <br />
I still need to schedule my gastric emptying study but I am having a difficult time with scheduling it.<br />
<br />
<br />
Write again soon.<br />
xxoxoxoxRachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-61098457207642769122014-04-09T09:18:00.000-07:002014-04-09T09:20:53.346-07:00The road I travel must be a dirt road....Did you find the title of this entry clever?<br />
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.<br />
<br />
This pothole is probably one of the biggest.<br />
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.<br />
I had finally hit my breaking point, when the doctor mentioned the magic words "surgery".<br />
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.<br />
<br />
That last ultrasound opened a door that I never saw coming.<br />
I got a call, saying I needed to go to an <em>oncologist.</em><br />
Everyone knows what kind of doctor this, and everyone knows when you are referred to one, it's never a good thing.<br />
<br />
So, with my head between my knees, I called the oncologist and got an appointment for 4/8.<br />
<br />
<br />
The overall appointment seemed positive.<br />
BUT I GOT <span style="font-size: x-large;">BIG </span><span style="font-size: small;">news.</span><br />
What is the doctor's approach.<br />
Medical menopause.<br />
That's right. I am 21 and will be going through menopause all at the same time.<br />
<br />
Sounds like a good time?<br />
Yeah right.<br />
<br />
I will go into the office every month, starting 4/15 and receive an implanted injection called zoladex.<br />
Research it.<br />
I am not excited about this.<br />
I do not want my bones to hurt, or to be even more tired than I already am, or being moody. <br />
Ok that's all of my rant on that.<br />
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<br />
<br />
The <span style="font-size: large;"><em><u>GOOD </u></em></span><span style="font-size: small;">news about all this?</span><br />
1-With going through menopause, the doctor believes my pain will subside.<br />
2-This will prepare me for surgery, and will make the doctor more comfortable with taking out ovaries if necessary.<br />
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.<br />
<br />
The <span style="font-size: large;"><em><u>NOT SO GOOD </u></em></span><span style="font-size: small;">news about this?</span><br />
1-Bloodwork every two weeks to monitor my hormone levels and my CA125.<br />
2-Menopause at 21. (except not having periods, that'll be nice).<br />
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.<br />
4-The fact that if this doesn't work, I will still be in pain.<br />
<br />
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. <br />
<br />
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Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-21240885209843202632014-04-03T12:12:00.004-07:002014-04-03T12:12:58.741-07:00One week in the bag!I am writing today on a very positive note.<br />
I successfully made it one week without ANY gluten!<br />
<br />
That wasn't without temptation.<br />
I had to watch my boyfriend eat a delicious cake, my friends drink beer, and the temptations at work were unbelievable.<br />
<br />
But after a week, I made it through.<br />
The cravings are slowly going away and I am starting to feel like a normal human being again.<br />
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.<br />
<br />
I wake up feeling alert and go to bed never feeling overly tired.<br />
I feel energized and active to the point where I was able to stop relying on caffeine.<br />
<br />
So will I stick with it this time?<br />
It's very much possible. The change may be worth giving up the nuggets and doughnuts.<br />
<br />
<br />
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.<br />
<br />
That's all for now,<br />
xxoxoxRachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-39343746419708399632014-03-26T09:30:00.001-07:002014-03-26T09:30:19.018-07:00Accepting the changesI have to be honest for a quick minute.<br />
I hate change.<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Will I stick to it? I can only hope. I only have so many options left.<br />
<br />
Know anyone on the fodmap or have tried it before? Let me know!<br />
<br />
I will post a picture of what exactly the fodmap is so everyone can have a little glance!<br />
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Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-85430229771884239012014-03-07T07:50:00.000-08:002014-03-07T07:50:07.400-08:00Updating when there's no new newsI 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.<br />
<br />
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.<br />
<br />
I'll write again soon.<br />
<br />
xoxoxoxRachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-62321534240772454932014-01-28T09:40:00.001-08:002014-01-28T09:40:10.009-08:00Finding a balanceThere 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.<br />
<br />
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.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-38450750264118787632014-01-16T14:22:00.000-08:002014-01-16T14:22:08.358-08:00Bringing In 2014This post is obviously late, but with my schedule it has been hard to find time to engross in the computer.<br />
<br />
For starters, I had an amazing time on vacation! Magical does not begin to describe my trip to Disney. Although my trip was exhausting(walking around parks for 4 days was not my friend), I had the most memorable trip of my life.<br />
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Here's just one picture from my trip. I will be completely honest, when they lit the castle, I actually cried from the beauty. If you haven't seen it or made the trip to Disney, it is certainly worth doing.<br />
<br />
<br />
Then we come upon a new year. Reading over my posts from 2013, I had a stressful year. Not only were my situations stressful, but I made no effort to take care of myself mentally or relieve the stress.<br />
<br />
Which leads me to my cheesy New Year's resolutions. I am not a huge fan of resolutions, but this year I feel it's necessary. My goal is to do what makes me happy, and to pick up some stress relieving activities. I spend all of my time worrying about my physical health and working, that I don't always take care of myself mentally.<br />
<br />
Keep tuned to see what will be new in Rachel's world...maybe some yoga, or knitting? Who knows what this year might bring!Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-5262750724994581492013-12-11T07:40:00.001-08:002013-12-11T07:40:18.881-08:00Tis the Season!I spent all last week in bed.<br />
On Tuesday/Wednesday we suspect that I had a seizure, with several small ones following.<br />
When I finally went to the hospital on Friday, they diagnosed me with low magnesium but are sending me to get some EEG's done on my head.<br />
Since I started the mag supplement, I must say I am feeling much better! I still have a migraine that won't go away even with fioricet, but I am regaining energy and almost completely back to normal.<br />
<br />
With feeling better, I am ready to get in the Christmas spirit.<br />
Over the next week, all of the presents I have ordered should be arriving and then my favorite part will commence-wrapping! I just love the look of wrapped presents under the tree.<br />
<br />
I've searched the internet high and low to find a simple, gluten free gingerbread man recipe-which I have found and cannot wait to try it out.<br />
<br />
I have borrowed Christmas movies, and hopefully, I will find some others on sale to purchase.I just love the movie Elf.<br />
<br />
My schedule is all laid out showing who we are to see and when-I just love spending time with my family.<br />
<br />
Most people get so stressed during this time of year-just make a plan, turn on some christmas tunes, drink some egg nog and relax!<br />
<br />
xoxox<br />
<br />
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<br />Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-2697696801587621152013-11-29T15:27:00.001-08:002013-11-29T15:27:14.823-08:00Finding a homeYesterday, I hit a roadblock.<div>
Actually, the road block began Wednesday night in the midst of our travels to my father's house. </div>
<div>
At 21 years old, I have finally come to the conclusion that my family will never be "normal".</div>
<div>
Every holiday I must choose who I want to spend my time with.</div>
<div>
This year, my family was spread out not only over one state, but two.</div>
<div>
I was finding it hard to be thankful when I was stuck in this sticky issue.</div>
<div>
Where do I go? Who do I choose to be with?</div>
<div>
<br /></div>
<div>
Then I remembered.</div>
<div>
I'm breathing.</div>
<div>
I'm not in the hospital fighting for my life at this moment.</div>
<div>
Why does it matter so much who I am with?</div>
<div>
What I am doing is most important.</div>
<div>
Celebrating life, love, and happiness.</div>
<div>
<br /></div>
<div>
The tears then started to clear up, and I was able to enjoy my holiday with some of my closest family members.</div>
<div>
<br /></div>
<div>
How was your thanksgiving? </div>
Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-36575557852175163482013-11-23T07:10:00.000-08:002013-11-23T07:10:18.043-08:00A week full of accomplishments! Well, lets see here-I am a little excited today.<br />
This week was the first week in months that I had more good days than bad.<br />
Unfortunately, so many good days put me on the couch Thursday and Friday with a fever and unbelievable pain.<br />
<br />
But back to the good days!<br />
1-I got up around 8 am(some days earlier) everyday except for Friday. That is an easy way to add 4 hours to your day.<br />
2-I was able to make it work on Tuesday. I worked for 6 hours and enjoyed every minute of it. To top it off, I even made it to my boring work meeting on Wednesday. I wasn't as much excited for the meeting, but the fact that I was able to make it made me happy.<br />
3-I went to GI on Wednesday and made a lot of progress. All of my meds are being swapped around and were going to consider doing the surgery for my esophagus in January.<br />
4-All of my appointments are now lined up and I am getting super excited for Disney!<br />
<br />
What did you do this week?<br />
<br />
<br />
<br />Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-27812740116126798342013-11-04T10:02:00.001-08:002013-11-04T10:02:52.348-08:00The month of giving thanks!<div class="separator" style="clear: both; text-align: center;">
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I love fall.<br />
I love Christmas.<br />
I love everything that has to do with pumpkins, apples, gingerbreads, orange and red, and well you get the picture.<br />
<br />
To be on bedrest while my favorite season is passing by is so painful-luckily I have a set of beautiful french doors that allow plenty of light and fall colors in.<br />
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I did make it to an apple orchard for the first time ever.It was so much fun to be outside and enjoying the fresh air. We picked apples, went on a hayride, and best of all I was able to spend it with two of my very best friends and my boyfriend.<br />
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So obviously, there are things that I am thankful for.<br />
I can run a list a mile long: my life, my family, my friends, my boyfriend, my job, having the ability to take care of myself, etc but there is one thing that has stuck in my mind.<br />
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Determination.<br />
Don't get me wrong-I think you need to give credit where credit is due and I try not to take advantage of things I have been gifted, but if I didn't have determination where would I be really?<br />
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I would be sickly because I wouldn't be determined to fight.<br />
I would be lonely because I wouldn't be determined to put the effort back into relationships.<br />
I would be swamped with medical bills because I would've given up on work a long time ago.<br />
I would feel worthless because I wouldn't do anything to make myself happy.<br />
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Determination is what gets me through each and every other day, so for that I am forever grateful.<br />
What are you thankful for?<br />
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<br />Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-90334332906653106232013-11-03T16:10:00.000-08:002013-11-03T16:10:15.310-08:00Learning to RunTo follow my last post, I have decided that taking up another exercise habit is a must.<br />
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I love spinning class.<br />
I hate paying $40 a month for a worthless gym otherwise.<br />
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We moved to a lovely community in August and I think it would be the perfect place to start walking, and learning to run.<br />
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I just feel as if I am on a search for something.<br />
Anything to make me feel complete or worthy again.<br />
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I used to love running until my lungs started to suck again.<br />
I was down to 10 minute miles-I was about dead afterwards, but I was doing them.<br />
I want to do that again.<br />
I want to have the power over my own body again.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-46246600944812462442013-11-02T14:07:00.000-07:002013-11-02T14:07:03.359-07:00Forgetting the BasicsSometimes, especially when I am down with an illness, I forget to keep up with the basics. Making sure when I eat, I eat balanced meals(or at least healthy foods), exercising, sleep patterns, all seem to go out the window. It normally isn't a big deal-I fall off of the track for 3-4 days and hop back on.But this time, it's been 4 months. I have forgotten what it is like to function like a normal person. I have neglected my body and honestly, could be causing it more harm than good. I believe that I have decided to join the gym again-it is the only way I can hold myself accountable. If I am paying for something, I intend to use it-even if it just to attend a yoga class or spinning.<br />
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There are just so many things you can do for your health, I don't know why I have never tried before. There are so many things to look into-juicing, herbal remedies, etc. I hope that this is a start of a new journey :)Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-67495171820498091322013-10-23T12:27:00.001-07:002013-10-23T12:27:37.038-07:00The mass that wouldn't go awayTo update you all on my recently scary adventures:<br />
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I went to the surgeon today to talk about the mass that has decided to make itself at home on my right ovary. I went into the appointment terrified of what the doctor might have to say. Was I going to need a full hysterectomy? What are the chances of it being cancer? There were so many questions that I have had for so long that I was begging for answers. Luckily, he was just as prepared as I was to talk about the findings. There is no need for a hysterectomy at this time. They are running the screens to see if what I have contains any pre-cancerous or cancerous cells. But I always learned a new word today...<br />
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<b>ENDOMETRIOSIS</b></div>
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What is this you ask? I still have not fully grasped what tags along with this word. All I am completely sure of, is that I have this, and that it is not going away. </div>
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A part of me was relieved, I for now, do not have cancer. But I am also in a way disappointed. I was hoping to just have this mass removed and to go on with my daily life. However, the doctor has made it clear that daily life isn't going to be quite the same anymore. I will be starting some new medicines, as well as continue to a genetics doctor to see if I carry the gene to possibly have Ovarian Cancer. So here I am yet again, fighting another battle.</div>
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XoXo </div>
Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-9834348189079326972013-10-06T09:08:00.004-07:002013-10-06T09:08:58.370-07:00Prioritizing and Figuring Life OutIt has been a stressful week. We experienced a death and had to travel to NY unexpectedly to attend the viewing and funeral. When we arrived, we chose to stay at his deceased grandparents house-it's where we typically spent our time and seemed fitting that we continue to sit there. However, it was much different. Their house had always been untidy, but it wasn't until now that I was noticing all of the clutter-I'm talking birthday cards from the 1970's, dried flowers from 1992, and the list continues. As I sat there, overwhelmed, it really hit me. You don't get to take any of this stuff with you. And honestly, how much can a dried flower that's shoved in the back of a drawer really mean to someone? I found myself wondering about my own life. I started to do blog searches and pinterest away on how to de-clutter and figure out what you actually need. The truth is, none of us know when we are going to pass. It can be from an ongoing illness or an instantaneous car crash. I have decided to go through everything in my apartment-and I mean everything, to avoid the hassle of whoever has to come up behind me and do the same. It's time to organize, figure out what's important, and figure out what isn't. That's all for now blogland x0x0x0Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-18800543170485953262013-09-29T10:40:00.002-07:002013-09-29T10:40:26.930-07:00the breaking pointI've always wondered what hitting a breaking point is like.Is it when you've hit a wall in your physical strength and just can't go on? Is it when you have suffered so many mental dilemmas between your prognosis and just wanting n g to be like everyone else? Or perhaps,it's all optional-you've shed all of the tears you can,been angry and blamed everything else....<br />
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As I sit here, physically,emotionally, and mentally drained, I can tell you that the breaking point doesn't feel like what it looks like in movies. It is a feeling of desperation-a feeling that that you would willingly give up anything you could to feel an ounce of happiness or satisfaction.<br />
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That my friends, is a breaking point.<br />
Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-17697878368099279632013-09-26T07:45:00.001-07:002013-09-26T07:45:33.716-07:00A day to processI am not a big fan of feeling sorry for yourself. I constantly tell myself that you "just have to do it". But as I sit here, drinking a cup of coffee, and laying on my couch, I am well aware that sometimes you just need to remember you are not a superhero. I have pushed myself for far too long, and I believe those long hours that I have spent working,dancing, staying up all night, are finally catching up to me. I have never felt so weak in my own body, I have never felt so powerless. There is power in knowing that I have spent most of my life living on the edge, defying the odds. I am at peace with knowing that it is time to slow down. I realize that I may not be able to work forever, and maybe I won't be able to work at all. Hopefully this will all sort out with the upcoming surgery and treatments that I will be receiving, but if it isn't, it's ok. My favorite saying is, "It's ok to not be ok" and that's what gets me through the day.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-3423349792273769002013-09-25T13:15:00.000-07:002013-09-25T13:15:19.106-07:00The wait in pain processIt isn't often that I post about something in the mixing bowl, but today I am going to do just that.I left the gynecologist in frustration, tears, and feeling more anxious than I did before I went in. As many of you know from mass texts and such, there has been some talk about a mass on my ovaries. We have been trying to do everything to relieve my pain, and I just end up curled on the couch at the end of the day, wishing it would go away. After spending an hour in the gynecologists office, the only hopeful things I heard were that we were going to move on in the process and get a surgery consultation on its way. Other than that, we are almost stuck. The insurance will not pay for the surgery until I have two sonograms, and until I have reached my 21st birthday. Why until I reach my 21st birthday? My doctor believes it's due to the complicated risks associated with this type of surgery-there are many times a patient goes in for "exploratory" surgery and comes out with a full hysterectomy. I understand that I am just a baby, but it is overly frustrating that I have been handling my own medical affairs and necessities for 5 years now, and they are now beginning to question my ability to read my body. October 23rd is the scheduled surgery consult. It feels forever away, but in reality I know that it will be here before I know it. I have never had to wait so long in pain,and quite frankly have never reached this type of fear in my life. I can only expect the worst and hope for the best.<br />
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Thanks for being patient with me blogland x0x0Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-15348221389217738692013-09-21T10:04:00.001-07:002013-09-21T10:04:56.270-07:00The battleToday is a new day.<br />
A day that is tougher than yesterday.<br />
There are still many tears to be shed.<br />
Many fears to be relieved.<br />
Questions to be answered.<br />
Thoughts that have no solution.<br />
Can we take a moment to grief our situation?<br />
Or must we continue with a smile on our face, pretending like we are not broken inside?<br />
The truth is, we are broken.<br />
Suffering with more internal pain than most people tend to realize.<br />
But we make the calls, inform the family, and continue on because that's what is expected.<br />
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Not anymore.<br />
It is my time.<br />
I will scream,cry, panic.<br />
I will not be ashamed when the tear falls from my eye.<br />
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But don't take that as me giving up.<br />
For the battle is not over until I say it is.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-61972679811337119822013-09-07T17:24:00.001-07:002013-09-07T17:24:25.894-07:00Merry go round!Good evening Blogland!<br />
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Clever title,eh? Well I thought about writing pumpkin spice lattes and antibiotics but I already took that title last year. I am writing you from my awesome couch in my awesome apartment due to having a not so awesome kidney infection. This is about the 4th or 5th time this year that I've had a kidney infection and I am having absolutely no luck with getting rid of it. There is talk of transplant due to low functionality but who knows what will really happen.<br />
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The human body is the most interesting mystery in life. It still baffles me that when there is an infection, you get so many medications. One to treat the infection, one to make you feel better because the medicine for the infections suck, one to make you want to eat, one to make you feel ok after you eat and I'm guessing you guys get the point. I am just looking forward to doing research and possibly doing a naturalistic approach to this. I am so sick of being so sick :(Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-49373327994459058612013-08-29T18:40:00.004-07:002013-08-29T18:40:55.767-07:00Today I am going to take the time to blog on some positive things in my life.Although there's plenty of bad that comes with CF, I don't want this blog to become a whine session.So with that being said,August has been an amazing month and I can't wait to share!<br />
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POSITIVE THOUGHTS<br />
1. I am writing this post from the bed in my new apartment :) That's right, Me and the boyfriend finally dove into commitment and are now living together. it's quite the adjustment but I'm enjoying every minute of it.<br />
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2. I had a ph probe placed yesterday and had it removed today! There were no complications and now all I have to do is wait for the results. Although the results could come back terrible, right now I'm just proud that I made it 24 hours with an uncomfortable wire shoved up my nose.<br />
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3. I am really having an awesome time at my job. I am so happy that even through my health stuff I have had the opportunity to work. It's really great.<br />
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That's all for tonight!<br />
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Xoxo blogland<3Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-89241208513785493642013-06-25T08:31:00.002-07:002013-06-25T08:31:38.668-07:00There will be hope,but no help.As I sit here contemplating my next visit with GI tomorrow, I can't help but think on the pessimistic side. I am not sure why there is nothing but bad news coming in my direction. Better yet, I am not sure why I am 20 and dealing with these battles. Being scared isn't an option anymore, I have spent too many nights crying and wondering and hoping for an answer. It is a sad reality that eventually, there will be no help. There will be hope, hope to think that I will continue on pushing, but eventually there will be nothing more left than a body crumbling to pieces. I can't let this thought process get me down. Negativity isn't my friend. But unfortunately it is a reality. I try to keep my posts light-hearted and funny. I almost find it comical when people can't find the humor in their situation. But sometimes, there is nothing light-hearted about the situation. There is nothing that you can do or say that can make the struggle ok, you just have to do it.<br />
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But with an update:<br />
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Life has been busy,like always. I follow people's blogs on a regular and it never seems to me like they do anything.I find myself sitting here wondering if people feel the same about me? I am sure that the computer can make it seem like life is whatever you write it up to be. Anyways. I started having more GI problems a few weeks back, bloating, gas,leaking, all that gross stuff that no 20 year old feels like dealing with when she's just trying to live life. I'll find out tomorrow about the progress of treatments on my colon and find out if I am having kidney problems. I never knew that life could be so complicated. But I guess that's what makes life interesting.Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-84829490477990176672013-06-15T08:43:00.000-07:002013-06-15T08:43:15.068-07:00MIAGood Morning Blogland!<div>
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I bet most of you have noticed that I went MIA-life has gotten crazy lately and I just didn't want to be negative nancy everytime I wrote, so I decided not to write at all.</div>
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What has been up in the world of Rachel might you ask? I feel as if this is a mountain that I will never see the top of. I had a crazy few weeks with trying to finish school up, started working full-time, trying to squeeze in time with my infusions and still stay on top of my treatments.</div>
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I would be lying if I said I have been completely compliant with my treatments. Actually, too be quite honest, I am not even sure how often I am doing my nebs anymore. I know,I know.Time isn't an excuse. I really entered a mild state of depression for a little while. My pre-screen for transplant came out with negative results, and I have just had a tough time finding a silver lining. You see, in my mind my life is all wrong. I will be 21 in October, and here I am still living at home, barely graduated with college with an associates, and going to the hospital every week. I thought for sure that this will be the rest of my life-sitting in front of a computer doing research and writing blogs for the rest of my life with no hope for a future.</div>
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But today,I am writing on a positive note. I have spent the past few weeks reflecting on my life and trying to decide on where I will go from here. I have spent some great few days with my boyfriend and realized I am the most loved girl in the world. I finally have found a chance to partially live on my own and live with my boyfriend and that makes me happier than anything in the world. And my work has finally offered me some awesome health insurance which will make my life a lot easier.</div>
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So at the end of the day,you just have to look at the little things and appreciate them.</div>
Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0tag:blogger.com,1999:blog-7961200336284547716.post-52116324596712799622013-05-07T08:22:00.002-07:002013-05-07T08:22:34.547-07:00CF Awareness month: Nurses WeekSo I'm taking the time today to give a shout-out to all the nurses! This is nurses' appreciation week, and as many of you can guess, nurses are a big part of our life. What most nurses don't realize though, is their job affects us. There is nothing like having an awesome nurse during your hospital stay. They have a tough job. There have been multiple times where I've puked on nurses, tried to hit nurses, probably urinated on them, and they keep coming back. This is what dedicated to your career means. I would never put up with half the things nurses do and still stick around. I personally have 3 awesome nurses.One for pulmonary, one for my infusions, and one for gi. They put up with me calling non-stop, comfort me, help me, and are really just awesome what they do. The thing that baffles me, is that not only do they do this for me, but they more than likely do this for everyone! It amazes me. So shout-out to all those nurses out there! We appreciate you :)Rachel Lynnehttp://www.blogger.com/profile/11404894079778525753noreply@blogger.com0