Update - sharing some of my last few days

#1

Hello all!

So i just thought i’d update everyone. I’m kind of starting to get a little scared on everything that’s been going on. The past three days have been hell for me. I didn’t even get out of bed on monday, my stomach was swollen and just absolutely killing me, my boyfriend has been having to force me to eat because i don’t have any kind of appetite, and last night he took off work convinced i would have to go to the ER. I ended up not going b/c i have my GI appointment today.

So i dragged myself out of bed, and drove up north about 30 mins to go see her. And i just broke down. I haven’t been able to take my pills without throwing them up at least once and having to re swallow them. So i went to be GI and just started bawling in her office, i’ve been doing everything they’ve told me to do, and it doesn’t seem to be doing anything.

She ended up taking me off the motrin (thank god b/c i really don’t think that’s been doing anything but making things worse) but she gave me a pill for nausea, darvocet, and lyrica, and she told me that if this doesn’t help we’re going to talk about putting in a pain pump… which just scared the crap out of me b/c i’m sick of surgeries and i don’t really know what a pain pump is.

But i guess just lately i’ve been trying to grasp what is going on, and i’ve got nothing. Everything just seems to be tumbling down on top of me and i can’t get up from it. I think i’ve officially hit my depressed period in all of this. and i’m afraid i won’t be able to get out of it. Sorry this was a bit depressing…

I hope all is well with everything else!

Hugs and love!
Emma

#2

i try to stay away from the ER as much as possible, because my dad isn’t the most understanding person when it comes to all of this and he would give me grief about going and i just don’t like listening to it on top of feeling like crap.

#3

Emma,

It is understandable that you would be down in the dumps. We ALL go through that. I’ve just come out of a period of that myself. I think it is part of the grieving process. The grieving over a chronic illness, the pain and yes feeling sorry for ourselves. All of that is legitimate as long as you don’t stay there forever. Don’t be afraid to take the pain meds.

As a parent I can relate to how your dad feels. I’m sure that part of the problem is the money issue. This is not a cheap disease. HOWEVER, He may be frustrated because just like you and I, he doesn’t understand why something can’t be done. It is especially hard when you see your child going through something like this. As a parent if we could take these things from our children and carry them ourselves we would.

If you have a Bible available to you I would encourage you to read Psalm 91. If you don’t have a Bible, let me know and I will write it out for you here. Do you have a group of Christian friends that can pray for you? If so ask them. It helps soooo much to know that is happening. If not let me know and with your permission I will put you on my church’s prayer list.

Anyway, know that I will be praying for you.

God Bless and Keep the Faith,
Vonnie

#4

I love listening to you Vonnie, Anyway, I dont understand why her dr wants to put a pump in, without trying some of the real, pain killers, like Dilauda, or anything, stronger than meds you give for a sprained ankle! Like I said it took me 5 yrs to get a diagnosis and some real pain meds.My heart goes out to ya Emma, just curious, how many dr’s have you seen so far?
One of my favorite quotes is, "And this too shall pass"
And I’m gonna look up that psalm vonnie was talkin about.
Take heart, hope ya have a better day

#5

Vonnie, i looked that quote up, it was amazing thank you so much!
Hughie, i’ve only been to one, my GI specialist

#6

Emma,

How are you feeling today? I think that Hughies has a valid point. If you are not happy with your doctor go get a second opinion. If they agree with your doctor that will put your mind at rest about what she is doing. If they disagree then you can decide if their plan of treatment better meets your needs.

Vonnie

#7

I’ve been debating looking for another doctor, but i’m so nervous that my dad will flip out on me if i mention it to him. Because i am still on their insurance, etc. I’m feeling alright today, at about 630 this morning my pain woke me up but i laid with my heating pad for awhile and i’m feeling alot better, i finally got up and started get stuff done around 930. So hopefully today will be an a-ok day. keeping my fingers crossed at least :-.

hope all is well

Emma

#8

I hope your dad comes to realize that this is a very debilitating and painful disease. You need the proper care and meds to sustain yourself through the bad times.

I am sorry you are afraid of his reaction.

I pray for your healing.

#9

Emma,

I will be praying for the relationship between you and your Dad.

Vonnie

#10

Dear Emma,
Like I said , I can’t imagine being young with this affliction, have you had any test done?MRI, CAT Scan, ENDO, EUS, etc.
Does your father know the seriousness of what you may have? Have you even been givin a diagnosis in writing?
Just a suggestion, ask the doctor to speak to your dad.
And when your feeling better, watch your diet, for real!
Hope your doing better,
Hughie

#11

Hughie,
I’ve had MRI after MRI done since december when all this really started happening, and i had the EUS done which is when the GI specialist confirmed that i had CP. I had it in writing and a picture of it. ANd if i asked my dad to go talk to my doctor he would laugh in my face. I have tried explaining to him how i’m feeling, but he doesn’t get it. My mom had a stroke when i was 8 and he’s just now excepting that (i’m now 20). So i feel like he’s in denial, but i don’t know how else to explain to him that i need his help. I feel like anytime i bring the pain up to him he thinks i’m over exaggerating. But i don’t know, i guess i’ll just keep doing what i’m doing and push through it.

thanks for the advice.

Hugs,
Emma

#12

Dear Emma,
My father, who’s no longer with me, God rest his lovely soul, who I miss dearly, had a massive stroke. , I wont get into details, but it was horrible! I would visit him almost every day, and babysit him a couple times a week, to give his nitwit wife a break. So I know exactly what your mom, you, and your family is going through.
It seems your going through several differant issues all at once dear, i hope I can be alittle help if I can.
I don’t know what to say about your dad, I’m a mind my own buisness type of person, and would hate to escalate
any problems you have with some advice that I’m not qualified to give.
I will say this, you have alot of support in these rooms, and it helps to talk and share about all the BS in your life,
I don’t know how bad your moms stroke was, but if she needs care, you are under alot of stress, it sounds like your between a rock and a hard space! Don’t feel guilty to take care of yourself.
I have two grown daughters, Emma, so I’m really feelin for ya.
Watch the fat intake girl! And when your feelin good, don’t think you can start eating junk again.
Glad to hear your feelin alittle better, and remember, "this too shall pass"
Things will get better.
Hughie

#13

Emma,

Just checking in to see how you are doing? Are you feeling any better? I hope so.

Regarding educating your dad, have him read the info at this site on Pancreatitis:

this might change his attitude (if he is open to being educated and sympathetic)

Archer

#14

I can only speak from my own experience but it sounds like you needed to go into the ER. With pain and throwing up like that you could have gotten some relief there. Also, when I am having an attached I do NOT eat. The pancreas needs time to settle down, heal, quiet down. I would not be able to handle it if my doc had put me on motrin alone.

After three yrs of this disease I no longer have attacks. But I have my hydrocodone close by just in case.

I will pray for some relief for you. It just seems a shame to have to suffer when there is indeed meds that can help the pain. Even without the pain pump.

God Bless You and Heal You.
Michel