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Crohn's poem from a 15 year olds' point of view

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Posted 4/5/2009 2:53 AM (GMT 0)
:-)  

Turning Point

I feel I am constantly bringing it up

But it changed my life completely.

The day I was diagnosee wih Crohn's Disease

Was the turning point in my story.

Crohn's disease has affected me greatly

Through what I can eat and do.

For a while I was trapped on an emotional roller coaster,

But now I am pulling through.

Some cry to God, "Why me?  Why Me?"

And for a while I did too.

It's especially hard when you're so young

And knowing this will never leave you.

But this emotional journey

Has brought me closer to my Lord.

I have decided that there must be a reason.

But what is He pushing me towards?

I'd like to think that the point of my pain

Is to remind me that it could be worse,

I am lucky.

But perhaps this illness will help me to save many.

I believe this was to push me

To pursue a career in medicine

To help so others won't have this pain.

Autoimmune disorders will be history.

Corrected by Marie

Posted 4/5/2009 2:57 AM (GMT 0)
I typed this poem in for my daughter. Sorry about the type o's.
Jennifer
Posted 4/5/2009 2:13 PM (GMT 0)
That was really good Jennifer. I agree with her so much that God gave me this disease for a reason. I believe it has made me more compassionate and stronger as a person too. Good Job Marie!!!
Posted 4/5/2009 4:25 PM (GMT 0)
Wonderful! Just remember he will never leave or forsake those who are His. I know that He uses my circumstances to work in me as well as in others. We must be brave and trust that He is doing great works!
Posted 4/5/2009 6:40 PM (GMT 0)
I enjoyed the poem very much and agree with it whole heartedly. Thanks for sharing your talents with us. God bless.
Posted 4/6/2009 12:27 AM (GMT 0)
Wow....this bring tears to my eyes. I'm not good with words. Your a remarkable young lady. Thank-you
Posted 4/6/2009 12:36 AM (GMT 0)
Hi, I altered the poem a little. When it was submitted some of my words had been omitted and altered, but now it is in its original form. I'm glad to see that it had such a strong effect on people. Thanks!

Marie
Posted 4/6/2009 1:20 AM (GMT 0)

Hi Jen and Marie,

Great Job!!! That's really inspiring.  It's wonderful to see someone so young with such strength and faith. 

Tom.

Posted 4/6/2009 12:37 PM (GMT 0)
Tom,
I am very frustrated today. Marie has been compaining about being constantly tired for a couple weeks now- at least. She has lost a few pounds the last few weeks, nothing to be too concerned about yet. Her eyes tell me she is not absorbing all the protein I have been feeding her. I guess all I can do is continue to pray and keep her on a healthy diet until we see the dr this Thursday. She is getting blood work done today just incase the 6 mp might be affecting her negatively.

Guess I am having a weak day- and it is only 8:35 am where I live. Oh dear. I had better find a way to change my outlook or I am in for a long day.
Jennifer
Posted 4/6/2009 2:14 PM (GMT 0)
That was very meaningful!!!!
Posted 4/6/2009 3:06 PM (GMT 0)

Hi Jen,

I know exactly how you feel. It can be such a rollercoaster ride sometimes. I would really get her iron stores checked on this upcoming bloodwork. That's one of the most common problems for teen girls is ongoing anemia, especially when puberty hits. It could also be her blood sugar is down. Perhaps she is getting too much protein and not enough carbs, which are responsible for energy levels. 

I'm sort of shooting blind here trying to make some suggestions. Her upcoming SBFT will tell you what's going on for sure, and if good news, will give you some reassurance, and your frustration should settle. 

Take a breath. God will be there for you. 

Tom.  

Posted 4/6/2009 10:18 PM (GMT 0)
Oh my goodness. Thanks for the suggestions and kind words. In my work I "lightly " counsel people adn often use the analogy of their spirit being like a beautiful glass, full of sparkling water- when worries start, or otherwise bad things happen to bring us down it is like mud slowly filling up that glass replacing the crystal clear clean water. As we pray or cope- handle our problems or put worries in their place, we are sifting or cleansing the muddy water and replacing it with the clean to bring our spirit back to a happy balanced state.

I guess I need ot offer up this worry, cleanse my spirit, and reap the rewards awaiting me. I am just so overwhelmed.

Thaks so much again. I will look at getting Marie more carbs .
Jennifer
Posted 4/7/2009 12:30 AM (GMT 0)

Jen,

That's a really good analogy, and might I add, you're sounding better already. One more thing that I wanted to mention. You said that Marie had lost a couple of pounds, which as I had indicated could be a result of a low carbohydrate intake as well. Each gram of carbohydrate you injest, retains three times it's weight in water. That's one of the reasons why low carb diets became so popular, since the weight loss seemed so rapid. The trick is mostly water weight is lost. I may be missing the mark here, are you keeping Marie off of too much sugar and starch in her diet? 

Tom.

Posted 4/7/2009 12:50 AM (GMT 0)
good poem i liked it very much just how i feel..
Posted 4/7/2009 3:41 AM (GMT 0)
I am saying thank you to all who commented on the poem and liked it on behalf of my daughter, Marie. It was just by chance that she shared the poem with me and I thought it would be great to share it on this forum.

Tom,
I haven't actually been altering her diet at all lately, just letting her choose for herself what she wants to eat. It is funny, but her gut has dictated our dinner for years , and I am just noticing now. She isn't limiting pasta, infact I have prepared it regularly lately which might be why my weight is going up !!!!!! She is just so nauseous and getting more crampy. Her bottom hurts and she admitted to me tonight there was a tiny amount of blood too. I am so glad we are going to the dr on Thursday. I hope she doesn't have to go on prednisone again, but if that is what it takes, then we shall follow orders. I wonder if he will switch her from 6mp to methotrexate. She hates needles, so that will be interesitng. we shall see. Her knees are really bothering her with stairs. Mine do that too, just thought it was my age. Maybe it is due to Crohn's. For as long as I can remember I have an irritable stomach , just use to the discomfort. When my doc asks "on a scale of 1-10" for pain, I can hardly answer because pain and discomfort are just part of being a Crohnie.

I am feeling better, mentally. Thanks for noticing. We have some financial family issues that have made it imperitive that I look for more work. I have done so and found a job in a food industry. It is not what I was looking for, but i will take anything. My pride was a little sore, but helping support our financial needs is what is most important. As you can imagine our medical bills are growing. hubby got a large pay decrease too. I just wonder how I will be an effective "MOM" to 5 kids and work 40+ hrs a week, too. I will make it work. I am a survivor, just grump about it first.

Thanks again for yoru support and comments. Hope Holly and all of you are well.

Jennifer
Posted 4/7/2009 10:33 AM (GMT 0)

Jen,

I don't know what to say. After reading your post, I could see that you're being tested with more than your share of adversity. No one is unaffected by this financial crunch we are in right now. I really hope that some other opportunities come your way. You're obviously doing the best you can and the Good Lord will certainly reward you for that. Things absolutely must get better for you.

The only other thing I could mention is, I know that 6mp/Imuran, can take about 3-6 months to reach their effectiveness. Perhaps the Doctor will suggest that you wait and see how the medication takes hold. As far as the Nausea, we were told at the outset to take Imuran at bedtime with food, as this seems to be a common side effect, maybe that will help Marie.

Tom.

Posted 4/7/2009 3:26 PM (GMT 0)
Tom,
You are so right on so many fronts. I would like to wait out the 6MP to see if it becomes more effective, it is just so hard to watch your little girl suffer- AS YOU WELL KNOW!!:)
Today we went in for blood tests and she just shook with fear (of needles). I can see her health slipping day by day. Today she broke down in the car because she feels like there is nothing she can eat that she "should" eat for optimum health- that her digestive system can tolerate. I feel helpless, she is beginning to feel hopeless. Neither is good. This "season" is a good time to offer it up, praise for the healing to come. I am not there right now. I use to pride myself on being a solid rock of optimism. As my kids would say, I need to "find my mojo".

Yes, the economy is sparing none. I do feel fortunate that it isn't worse.

Thanks soooooo much again for your compassion, ability to see behind my words into my pain, and for your support.
Take care and God bless,
Jennifer
Posted 4/7/2009 6:04 PM (GMT 0)

Jen,

It really breaks my heart to hear where you're at right now. I can Totally relate to everything you're saying. There's nothing worse as a parent than to have to sit by feeling "helpless", as your child suffers. 

What concerns me the most is to hear you say "hopeless" though. It concerns me because it's exactly the way I felt at times, and I used that exact word to describe things at some of our low points. We have to be positive and optomistic that there's better days ahead. Marie, (and Holly), have their whole lives ahead of them. There's always going to be hope for better treatment, medications, Doctors etc. As much as I feel as you do, at the same time I can't imagine that these girls will spend the rest of their lives suffering. I just can't believe that this is what God has intended for us. 

I hope this doesn't sound like a motivational speech. I really don't want to sound like that. I used to view myself exactly as you do, solid and on top of things. It's easy when you  have alternatives in front of you. When we sometimes get to the point where you're out of options, that's when it get's tough. I can remeber Robert Schuller saying, "tough times don't last, tough people do". I sincerely hope that this is the case for both of us. 

Tom.

P.S. Just re-reading some of your posts. Please remember to ask about an iron supplement, unfortunately, this too can take several months to reach it's peak effectiveness. Also, if the blood Marie is having is bright red, (Holly has that occasionally as well), I've been told that it's likely an internal hemmoroid, or maybe a mall tear from hard stool. When are you seeing your GI next? Isn't her SBFT coming up?

Posted 4/8/2009 2:29 AM (GMT 0)
Yes, sbft is Thursday. I will take a list of things to discuss with him at that time.
Thanks agian for yoru words, wisdom,and hope.

Jen
Posted 4/10/2009 4:11 AM (GMT 0)
Tom,
SBFT went well today, no fustulas or strictures. Yahoo!!! Some blood tests came back though and everything looked normal except for her platelet count was 400+. doc wants her checked for Mono as she has been exposed. Her IBD markers were all in check.
She is feeling awful, maybe a virus-- nerves???? Bought her some boost or ensure tonight, can't remember the name. She likes it.
She still has numbness, knees hurt terribly, new skin sensitivity on her back/ Ugh.
Overall today was a great day for answers and renewed hope. HEr doc is moving to another city, a little farther away. She almost cried in his office when he told her.

Jenni
Posted 4/10/2009 11:29 AM (GMT 0)

Hi Jen,

That's really good news!! Especially no strictures. You certainly have reason for "renewed hope". It seems that her symptoms aren't Crohn's related. I suppose we tend to forget about other viruses, flu bugs and such being so focussed on the disease all of the time. Please continue to post her progress. 

Tom.

Posted 4/12/2009 2:36 PM (GMT 0)

55555jlw said...
I typed this poem in for my daughter. Sorry about the type o's.
Jennifer

smurf Hi Jenn that was great and my mom always told me that god gave this disease to me for a reason i thought at first why would god make me sick and mom said someday it will come to me and it took a few years but it did i believe it was to make me stronger and it has over the years i would have never made it through those tough times if i was weak i am a fighter a good one god gave me the will to fight to never give up to be strong and what ever life throws my way i am ready for it cause i know i can stand on my own 2 feet,and when i am weak god takes over for me and pulls me through those hard times when i just dont have nothing left in me,he lies beside me and sticks out his arms for more IVs lines so mine can rest and when surgery comes i keep my faith and know that he is at my side holding my hand and keeping a watchfull eye on the surgen helping him save me,i am a big believer in angels god sends them to us when were weak in many differant forms could be a friend when your in a time of need or a needle in the bum for the pain there all his workers helping us be better people ans i know that my angel is always with me where ever i go i feel safe and protected in the presents of god and he always knows the answers to our questions even when we dont think we do that answer were given is the answer of him we always no the right thing to do but knowing we have this power on our sides makes it all the better.Dont ever forget our father lord jesus christ amen. God Bless All Of You Jenn. yeah .
Posted 4/13/2009 12:37 AM (GMT 0)
remarkable....
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