Feeling sorry for myself, oh yes it's true!

[HisQueen99]

My name is Bethany, I'm a 32 year old mother of four. My other half has a brain injury and also another serious disease. I've been sick since I was 15. I complained ALLOT over the years to so many doctors but was blown off time and time again. Until at the age of 25, when I was told I had IBS and fibromyalgia. At that point I was just happy to have something to call my problems and started finding ways to live my life as best I could. The problem was no matter my daily habits I was only getting sicker and weaker. Got to the point I had to nap daily, couldn't play with my kids and couldn't leave my house because I couldn't control my bowels at times. Yep I'm sharing everything. Hell why not. Anyways, after complaining again and again to my doctors, they finally got me into a GI. This was just in Oct. 2011. It took no time to discover I had crohns and they started me on steroids. That was good for about 3 weeks but I had a reaction and that was pancreatitis. Spent 3 weeks in the hospital not able to eat. Tried a different steroid and some thing again only this time i spent 4 1/2 weeks in and got set home with a feeding tub. thankfully after a week at home they took that out. So we moved on to humira right away because my crohns is severe. Well that worked for a few months and then just stopped??? What the hell right? So then it was remacade. Which is what I'm still taking but because it also hasn't helped much, I'm now getting my infusions every 6 weeks instead of 8. Ahhhhh ok I want to scream but I press on. Well I'm in the middle of a flare and everything seems to be just to overwhelming. Things that are difficult but that I know I should handle better, are just to darn much. So this is me. Feeling sorry for myself. Wow I'm sure not many if any will read this novel I just wrote but I feel better venting. So thank you and I'm happy to have found this forum.

 

[rollinstone]

Hey sorry you're not doing so well ATM, things will get better though just hang in there!

 

[Hope345]

HisQueen99
Welcome to the forum.
This is the place to vent, learn and get lots of support.

I hope the Remicade is the med that works for you. Are you taking any other meds?
what symptoms are you dealing with? Are you anemic? Are you taking a multi vitamin? Have they checked to see if you are low on Vit B12, Vit D, Vit K?

Let us know how you are doing and vent away.

 

[Alexce93]

So sorry to hear that you're not doing well!
You are going through a lot and I think that if you want to scream and shout and cry you should!! Venting is the best way of coping

I'm about to have my 3rd dose of remicade (4 weeks since my 2nd dose) but my symptoms are starting to show so I have a feeling I am going to need more regular infusions as well! :ymad:

Stay positive! :ghug: You're not alone!

PS: I hope your other half gets "better" soon ...

 

[Honey]

Hi Bethany, so sorry you are having a difficult time. I feel empathy with you. I too was diagnosed with M.E. years ago, need to rest every day. 2 years ago diagnosed with Crohns : that causes fatigue too. Meds too made me ill, so now I am on Infliximab. However off it just now after infection and weakness. I am concerned too. This seems to be the nature of treatment with Crohns.It is unpredictable. Natural to feel cheesed off!!! Thinking of you and hope all settles soon. Please let me know how you are doing. It helps to share our thoughts.


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[HisQueen99]

Thank you for your positive words.

I take a liquid multi vitamin daily, extra iron and weekly B 12 injections.
I'm also on Zoloft, Ritalin, lomotil, and oxycodone. Actually there's a few others I'm supposed to take but my stomach can't handle anymore. Oh and of course I have every med you can imagine for nausea.

I'm taking my diet back to the basics and starting over because I was doing better for a while and added allot back but I'm back to scare one.

My bf seems to think adding another woman into the house is what's needed. BULL ****! This is because I can't keep up on all the house work all the time and I can't make a full dinner every night for everyone.

Yep this is what I deal with. I have no support. Thank god I found this forum.

 

[Honey]

Hi HisQueen99,I am glad I found this site too ! I am often dismissed and not listened to as I am told "how well I look' ! You can feel very alone as it is a unique illness.The goalposts keep changing;just when you are doing well on one medicine, it changes. I was doing well on Infliximab and hope that continues! I am sure the same will happen to you. I mean once your consultant gets the right meds for you,then you Will feel much better. I was recommended vitamin D. Thinking of you. Let me know how you are doing.

 

[HisQueen99]

I forgot all about the vit. d......shoot. I mean I'm supposed to take 3000mg a day and haven't in a long time.

Do any of you also suffer from memory problems, even speech at times? It's so frustrating. I feel at times that my brain is running at half speed. Although this could also be do to my fibromyalgia.

 

[HisQueen99]

Honey~ I also am told allot that I don't even look sick. It's one thing that I hate. Just because they can't see my disease it doesn't exsest.

It doesn't matter that my intestines look like Swiss cheese and that I am always bleeding threw those nasty sores growing inside me because they can't see that.

People can be so insensitive and cruel.

 

[Hope345]

My daughter does not look sick either. In some ways it is a blessing of course. At 14, she doesnt want to look any different.

A dear friend of mine on here once told me her doctor said that because of the fact she too looks healthy, he calls it the "walking wounded". No one can see what is truly happening on the inside, and how much hurt there is.

People can be so insensitive.

As a mother of a daughter with Crohns, my heart goes out to all of you.