sad sooo sad.... rant

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malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 10/4/2007 5:48 PM (GMT -7)   
I got put on Imuran last night on top of the asacol because my symptoms are getting worse with the addition of school so I got bumped up to the next round of meds. =0(

I guess I'm losing this battle. I am going to talk to Disability Student Services and see what I should do--if I should drop 2 classes and keep one or drop all. I was going to graduate next qtr and then go to UW in the spring. I am sooo close! I just got grants FINALLY after paying for tuition for 3 years and I was on last chance financial aid probation because I failed a math class a couple of qtrs ago and it was my final probation so I lose that too. The first time I got on probation was when I had to drop my spring qtr math class in 2001 before my mama died and she was on the path where they start getting sick all the time before they die. I had to provide a death certificate to provide she was dead to get it back. Gotta love bureaucracies. I need the health ins through Cobra ($500/mo) and tried to get a private loan so I could quit work but still keep my health ins and it got denied. There are no words that can explain how angry/sad I am now. I feel backed into a corner.

I had to sit down and tell my auntie today that I have to quit this qtr (I live with her family while I am in college) cause the doctor said yesterday my mind's stubbornness can't overcome my body and in just the week and a 1/2 that I have been in school I have reverted back almost to the point when I got out of the hospital in August and we haven't even done anything stressful.. yet. LOL.

It's not fair! I know we all here have suffered a loss but hell. What did we do to deserve this? In some past life was I some evil b**** and now I'm getting karma pay back? I was going to apply for graduation this week and start applying to the university of washington and now stop. I must have been in denial thinking I could go back to school so soon after being diagnosed. I cannot will my body. I don't want to live with my aunt and uncle for the rest of my life! I'm 35! I moved in with them in 2005 thinking that it was going to be a 4 year thing bing bam boom done. I don't want them to think I am a mooch dog either. I'm ashamed.

I feel really weak today and nauseous. I know it's cause my body thinks this Imuran is a flu. =0( sad.... soo sad...sniffle sniffle.
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds Asacol 3x day


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2007 6:09 PM (GMT -7)   
So sorry you are having a tough time right now. This disease doesn't give a hoot about our dreams. I hope the doc can this flare under control for you soon. With the Imuran, try taking it either with dinner or right before bedtime. Maybe that will help offset some of the side effects i.e. nausea and fatigue. Hope the Imuran works well for you and you hit remission soon. God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


jellybean1887
Veteran Member


Date Joined May 2005
Total Posts : 1362
   Posted 10/4/2007 6:16 PM (GMT -7)   
I can completely relate to the whole school thing. I missed three weeks of class, and I am taking fifteen credits. I had to drop one class because the work just couldn't be made up, but I was able to keep up on my own with the other twelve credits. The add/drop period is over, so to withdraw from the class you have to pay a fee. I went to the dean of my school to see if I could have the fee waived because I had a medical excuse signed by my doctor, and she didn't want to waive the fee. The only reason it was waived was because she said she didn't "want to sit here and argue with me." I couldn't believe it. Needless to say, I am now in the process of transferring universities. Anyway, hope things get better for you soon.
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include: Purinethol, Colazal, Prednisone, Nexium and Remicade


Susanknits
Regular Member


Date Joined Sep 2007
Total Posts : 33
   Posted 10/4/2007 6:26 PM (GMT -7)   
I'm not a lawyer, but stuff like this ought to be covered under the Americans with Disabilities Act. Check it out, becuase I'm pretty sure schools have to make reasonable accommodations.
48 year old female, dx with Crohn's 12/04 probably had it for 30 years. On Entecort, Pentasa, imipramine, vitamins. didn't respond to 6MP, Remicade or methotrexate. CT Scan shows several strictures with proximal dilatation and a 12" section that's inflamed.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 10/4/2007 9:38 PM (GMT -7)   
Have you considered experimenting with low-dose naltrexone? I just started on it 10 days ago, and I think (not yet 100% certain) that it's helping. Of course, I could just be experiencing the placebo effect. I'll have to wait a few months before I can make a definite statement. I will post more about this when I'm sure that it's helped, or failed to help. But for the first time in years, I actually have some hope.

By the way, I got my naltrexone without a prescription from riverpharmacy.com. I believe it's in India. they ship DHL, takes about 3 weeks to the USA. Cost was reasonable. Note that they ship full 50 mg naltrexone, it's up to you to divide each pill into 12-16 minidoses. I've gotten good at doing that - not really difficult.

More info if you want it.

best regards,
Robert
Crohn's since 1988
3 resections


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 10/5/2007 11:33 PM (GMT -7)   
thank you guys for all your comments--I really appreciate it. it feels good to have people that I can talk to that can empathize. =0)
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds:
Asacol 3x day
Imuran 50MG 3 x day
Lamictal 125 MG/day for bioloar II


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2007 7:08 AM (GMT -7)   
Malakai- Im so sorry you are having such a rough time. Do you think you should hold off a little on dropping classes? I know it was your doctors advice but if you are starting on a new medication, it might just work!!! Once you drop it I dont think you can pick it back up. Even if you have to miss class in the meantime, let your professors know what is going on and keep up with the work at home on your own. Also, anytime we are going through a time of transition, our bodies revolt until they get used to it. Maybe after a couple more weeks of school you will be in the routine and will be feeling great. When your doctor said you are back to how you were when you were released from the hospital what did he mean? He hasnt scoped you or anything so he is just going on your daily symptoms, right? Only you know what is best for you and if you do have to drop your classes everyone here WILL understand. Im just thinking with it being so close to the start of school AND starting a new treatment, you might want to stick it out just a little longer.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 10/6/2007 7:30 AM (GMT -7)   
Give the Imuran time to work it may help you I take 6mp it works great for me.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/7/2007 8:11 AM (GMT -7)   
malakai,

I can totally feel for you. I had to drop out of many classes before and, once, a whole semester all due to Crohn's flares.

But something VERY IMPORTANT you should know--I am writing because I wish someone had told me this--there are specific grants for people who are disabled and going to college. Now, NOBODY told me until my Junior year in college that Crohn's is considered a debilitating disease (of course, We all know it is), and that I qualified for help from our state's Office of Vocational Rehabilitation (they help people with disabilities get through and pay for school to find jobs). I could have been getting grants from them for the first 2 1/2 years of college, had I know it was available. The guy who I worked with told me that many people do not realize they qualify, and much money goes unclaimed.

I do not know what state you are in (I am in PA), but I am positive that you have to have some sort of similar organization for you in your state.

They helped pay for my junior year, and paid almost all of my senior year tuition. I also was able to go to grad school and get my Master's (though they did not help with this).

Call around, look into it--it could definitely be worth it. I also was paying $500/mo for good health insurance at the time I was going to school...it totally sucks.

Hope this helps! :-) :-) :-) :-)

Sherbear41466
Regular Member


Date Joined Jan 2005
Total Posts : 364
   Posted 10/7/2007 8:42 AM (GMT -7)   
Malaiki,

I know just how you feel. Thought the same as you, I must have been one nasty person in a previous life! I had a wonderful 3 day pity party over that. I had to make some major changes in my life and learn to adapt. The first thing I had to learn was patience. Give the medicine time to work. Life doesn't quit moving, so we learn to adjust our schedules. Talk to your teachers, talk to your aunt and uncle. Believe it or not, you will get through this. I think stress was one of my triggers, so I took some Yoga, just basic simple stretching and breathing to learn to relax. It helps to keep in mind that everything happens for a reason. Keep your chin up, I'm sure that all the pieces will come together, maybe not as fast as you would like them too, just be patient.
 ~Sherry


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 10/7/2007 12:55 PM (GMT -7)   

Thank you guys so much for your advices and good ideas.  I really needed to hear that today. 

Yesterday I saw my auntie in the kitchen in the morning and she said something like "You like wasting money.  I would never throw away money like that."  Just out of the blue.  After we just spoke the day before why I was dropping.  Like I decided to wake up one day, take a full load and drop it becase I want to waste money.  I went in my room and was so upset I shook but I bit my tongue.  Last night, I dropped one class and am keeping the other two because there is no way that I would be able to live through the next 3 months hearing THAT every day. 

When she asked me where I was going later in the day I said:  "I'm going to the library to study. I didn't drop all my classes for the quarter because I don't want to waste money.  God forbid that my health is important.  I am so tired of people thinking I am not sick because you don't see anything because it is inside of me.  Maybe when I wind up in the hospital AGAIN you guys will believe that I'm not lying." and then I left and cried. 

Sometimes I feel so alone because no one in my circle has ever had an autoimmune disorder and hearing from you guys makes me feel like I'm not some alien. =0)  I had someone call me up and tell me that this fatigue and feeling sick is all in my head and I just need to buck up.  Shoot with friends and family like this, who needs enemies? 

I will look into the disability grants and work on trying to keep a good outlook. Also trying something to learn how to meditate or do yoga to relax my mind might help me.  I haven't been sleeping well in the past week.  so angry--and that probably isn't helping me heal either.   =0)


Newbie - 35 yrs old Diagnosed: 08/03/07
Meds:
Asacol 3x day
Imuran 50MG 3 x day
Lamictal 125 MG/day for bioloar II


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 10/7/2007 2:07 PM (GMT -7)   
I feel for you so much. You have gotten lots of great advice and I don't really have anything to add, just my sympathy. I can certainly relate to what you wrote about the disease being "on the inside" and people kind of discrediting how rotten you feel. I have a toddler and a very healthy husband who don't really "get" why I'm so tired and would almost always prefer a nap over whatever they have in mind. I have to come here, too, to remind myself that this is real and I'm not lazy. I was lucky enough to squeak through college (I was a LIFER, taking 1 class at a time through my 20's and then finally going full-time my last 2 years) before this dd really took hold.

Chin up and hang in there : )
36 year old mother of a fabulous toddler named Mara. Symptoms began after Mara's birth, with widespread pain/stiffness and mucus in stool. Had seen blood in stool for years prior but believe (and still suspect) hemorrhoids and/or fissures for this particular manifestation.

STARTED LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

Diagnosed with Crohn's July 2007. The only visible areas of inflammation via scope were my stomach, rectum, and somewhere else in my colon (was too out of it to hear where, exactly). Pill cam, SBFT, CT Scan all were normal.

TRYING MY BEST TO PRECLUDE FUTURE COMPLICATIONS.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and burning now gone. Gastritis symptoms are also quiet now. What was horrible right hip and low back pain has subsided about 60%. I'm pretty much feeling normal since the SCD/Supplements/Naltrexone but the fatigue still occurs and I in no way think I do not have more symptoms in my future.

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