Worry-a-thon 2013

[aeolious]

I'm scared to even make the attempt to re-enter the working world again. I don't want to return to my career anymore, due to fear and anxiety of going back to work, only to be incapacitated a short time later.

I'm worried that my girlfriend would never want to stay with me through all of the tough times I'll likely have to face. Its so trying for her to see me go through a flare (her first time to go through it with me), and so heavy for me to have to rely on her. I've barely been able to keep up my end of the finances for the past 4 months, returning to work only to be disabled by arthritis in my hips after only a few weeks. I had a short gig as a "manny" that earned just enough to pay the endless parade of monthly bills, not even to consider the medical debt I've managed to rack-up this year alone. No job, no health insurance, no help from the gov't, a family that barely has the means to help me when I do fall short financially. I want to earn enough to not fear next months rent, but fear that the stress of a job may land me back in the hospital.

More over, I'm afraid to return to the career I was once passionate about because of the immune suppressing meds I'm on will make me susceptible to catching illnesses from clients and co-workers. I'm not sure how vulnerable I will become to illness, now that I'm starting humira, but I know working around dozens of kids, coming from all over the metroplex area, bringing all of the pathogens they've been exposed to in their own respective lives...the odds of staying healthy for very long are stacked against me.

Tomorrow I'm going to a couple of job interviews and I sincerely hope to be working by the end of this week. But, I feel like I'm forced to go backwards, career and income-wise, just to avoid my working-related anxiety. I hope my new boss can be as understanding as my old one, and perhaps even more patient with me. I've chosen an occupation where being there on-time everyday is not as imperative. It may reflect bad on me to my boss, but at least I won't have the worry of clients on my shoulders. I won't have to fake feeling well for very long, just a brief smile and thank you from my customers and off I go. I'll have something to wake-up for, hopefully ending my horrible sleep cycles and setting me onto a somewhat normal pattern of sleep. I don't know how I'll conquer the near-constant fatigue, but at least I'll have something to be tired about.

My poor girlfriend deserves more than I can offer, but I try to love and comfort her as much as possible. For a while there, she was getting really fed-up with hearing my complaints about symptoms or worries about my recovery. So, now I've fallen into the habit of masking my symptoms again, like before I was hospitalized again. I don't want my problems to be other people's problem. I'm embarassed of how many bad days I have and have given up whining to my friends about how much it sucks to have this disease. I even talk **** and blame myself for the disease, as it no doubt relates to poor diet. Every american is subjected to the same total crap food, but most people's bodies don't attack themselves because of their poor dietary chioces/options. I've gone through very difficult periods of food cravings and food phobias, and feel shamed when faced with my girlfriend's criticism of my eating choices (meanwhile she's free to enjoy whatever food she pleases). It's like a medically enabled version of hypocrisy. And I hate it when she gets to eat delectable spicy foods in front of me while I shutter at the thought of the ramifications of me eating such a thing. Of course, there was a time, not so long ago, when I was able to enjoy all of these foods too, with no symptoms to speak of.

I wish I could find out what really sets me off into crohns flares. I try to retrace every poor choice of food and supplements I'd consumed over the past few months and pinpoint possible aggravators, only to make me feel guilty for indulging while I was healthy enough to do so. My friends don't know what its like to have to turn away things you once loved and enjoyed regularly. They can go on abusing their bodies endlessly and seem to suffer no ramifications, while I take one bite or sip of something I shouldn't have and sometimes end up suffering for days. I have to endure watching them drink and be merry. Most nights I end up on the couch, unable to sleep near my lover because I constantly disturb her from my symptoms. I'm forced into solitude, and oftentimes do so willingly, knowing that I'll end up disturbing her sleep and suffering her half-awake wrath.

The nightmares get to me too. Of course the details are too personal to be meaningful to anyone to bother listening to a retelling of them, let alone remembering them for more than the first hour after waking. I have dreams where I'm at various jobs, and I have some sort of crohns emergency. I wake-up, immediately anxious and fretting facing the day. I sometimes wish for welfare, just so I won't have to get back out there and try my best to be a little worker droid. I'll go, chugging along for another year or two before my body decides to sabotage me...leaving me again letting people down and no one else to blame besides myself. I feel like I drain so many people, and yet I'm the one drained of energy and nutrition and oftentimes, hope.

How do you stay hopeful when you know what a dreadful future you have in-store? It's like I nearly have the guarantee of medical emergencies, serious surgeries, additional auto-immune diseases and cancer. I know that everyone is guaranteed death, but most people have the luxury of living out their lives in hopes of peacefully dying in their sleep in their elderly years. I fear not making past 50. I hate when I'm reminded of how many ways that it could be worse. I hate getting little tid bits of information from friends, family and strangers claiming to cure crohns. I've tried so many things, I'd still prefer to think that I can cure myself or put myself into remission "naturally", guiltily telling myself its all in my head and that I can control it. When I'm in remission, its the very same attitude that serves me, only to defeat me with self-blame when I become ill.

I don't care who reads this, I don't care for encouraging responses. I'm just happy that there is a place where I can whine my little butt-off to some reader that has or is facing the same things. My deeper-darker thoughts are yours to behold, so that we know that they're normal to people afflicted like ourselves. Up into the wee hours of the morning crying to myself and worrying about the future.

 

[plantluvr]

im truely sorry your going thru this. you sound just like me. its not fair is it. ive pushed so many people away. my husband sometimes could care less if i liv or die i feel. he used to help when i got sick now he just tells me to deal and do it myself. american diets are evil and he doesnt care what i eat. as long as he has his. im on disability and its so hard i know. ive lost everything over and over again. i was forced to work before then. i had a bad flare almost lost my life and decided it was time to think about what i needed. had to quit working because stress made me flare bad. my dad finally told me tonight he accepts the fact i cant work. 37 yrs old it took him this long. i dont want to be a robot either. times are tough specially when we dont get the compassion we need. i want to tell you its not easy but i think we have compassion for others as well. i know you will find some light and hopefully you can open up to your gf. i intoverted everything. keep fighting. much love.:hug:

 

[Daunting]

I am probably not the one to give advise when it comes to these types of feelings because - I too feel the same way you do many many times. I am still sruggling since diagnosis and have only found a few days once in a while where I am feeling good.
when I first found out I had I it, I did the same thing you did I tried pushing the ones I loved away because I was scared to hurt them, scared that they would hurt me. I seen a psychologist, who said this was the worse thing I could do and thankfully since I just started it I could hopefully correct it. I know we do not want to burden or feel like we are always depending on them. But they are our family and friends. If it were the other way would you not be there for her. I would be there for my family in a instant. I know this is rotten that we have this. I say this everyday as I struggle to get out of bed to go to work.
Our family and friends are our support our strength - please do not push them away Tell them you love them and appreciate all the help you get from them.

 

[Amy2]

My 16 year old son was diagnosed with Crohn's in March. Since then, I have watched him suffer physically and ride a terrible emotional roller coaster. I've watched as most of his friends have abandoned him because he refuses to candy coat his true feelings. When they asked how he was, for the 10th time, they wanted a positive response and they didn't get one. He says, "My life sucks and I'm not going to lie, to make them feel better."

And things haven't even gotten really bad for him, YET.

Before he was diagnosed, he didn't eat great, but he didn't eat as bad as most Americans do. Organic fruit, pasta, pb&js on whole wheat and many Amy's burritos.
I should have made him eat more greens. Is that what caused this terrible disease?
My daughter, who also got the disease LOVED greens. He was naturally slim, but I should have made him go to the gym anyway. My daughter WAS going to the gym, when she got sick...

I have watched my sweet son turn into a sad, angry person in 7 months. He's in counseling now, but that won't change the facts for him.

I try to be there for him 100% but it's hard to be around your mom so much, when you're almost 17. He wants to leave the nest, but feels he might never be able to.

We're doing the only thing we can: Saving for his future, so that he will never be financially dependend on his future partner or anyone else.

 

[aeolious]

The best part about Crohn's is you can go into remission and be healthy for years at a time without another flare-up. Your son is still in the dark phase of just being diagnosed. It gets better.
...then it comes back and gets worse, but the next time you will have more experience on your side. You get better at coping with long hospital stays and uncomfortable procedures. You also have an upper hand in truly being able to appreciate the good things that come to you. Everyday of not being sick is a blessing.
Your son is not alone, although it is a very isolating condition, there are many many more suffers out there that are willing to talk to him. Its hard finding others in the "real world" that suffer from the same condition, but the online community is active and full of compassion. We've all been there, some of us are there right now, and some have recovered back to some sense of normalcy. I wish I had counseling for my Crohn's woes, but no healthcare is a bitch.

 

[Daunting]

Hi All,

I've been told by my doctor that when it returns after remission, it does not necessary come back worse, sometimes it comes back less severe or as you mentioned worse. This disease is very unpredictable and it seems to be tuned to each one individually. That is why they are having such a hard time treating it, some medications work for some and others they don't. The disease if you want to believe it, is as hard on the doctors as they are on us.

I have a mild case as you would put it from the damage seen in my colonoscopies, however I am very symptomatic. They believe it may be a mix between IBS and crohns however as we know there Is no cure for neither, and I think I visit my Gi at least 2 a month, because I seem to flare once every 2 weeks. medications are helpful yes, but I am thinking it is more mind over body sometimes.
Yes you are right visiting a counsellor can be exspensive, I have signed myself up for one and should be sometime next month for the next availability. It can take a while as there are many people out there who need help as well. We are not alone in this. And thanks to this forum I have learned a lot. But one important thing, stop googling!!!!!! Ask your doctor instead, this was my worse thing I ever did.

 

[Amy2]

I have out diagnosed doctors many times, by googling. I found this sight, by googling.
I learned about EEN, by googling.

It's good to google.

 

[Daunting]

For some Googling can definetly help, for others like me it can be really scary, I tend to spiral with bad thoughts over and over when I google.

Be your own advocate, do what is good for you.

 

[Amy2]

The truth can be very scary, but I still want to know it. I read a lot of scary stuff about Crohn's so that I know what to watch out for, but I often don't read the graphic details, as they are nothing but depressing.