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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 2/16/2011 8:11 PM (GMT -6)   
I can't believe I am typing this a second time! The thread walked off on me ugh
 
It has been a while since my last post and I am not sure if anyone remembers me. I wanted to share what's been taking place if it helps anyone else out. In 07 I was dx with Crohn's and Lupus after a horrible flare during the summer. ( Yes , I am sure of both dx's as they were positive by serology and biopsy ) Im a patient at John's Hopkin and their Lupus dept is second to none I discovered the hard way.
 
In 09 I had a severe flare of both disease after 2 years of treatment with the traditional meds like plaquinil and steriods alone with IBD medication for my colon. I ended up hospitilized as the inflammation was literally melting my gallbladder and needed to be removed ( surgical team was surprised by the finding ). The surgery threw my already compromised body into more complications and I ended up on TPN for 4 months unable to drink or eat, mass amounts of IV steriods, insulin to combat steriods sugars on and on and on the list goes. I had a nurse assigned to my home for 4 months and darn near didn't live to tell the story.The decision was made inpatient to start treatment with immunosuppressants.
 
I have to say that the joint pain is so much better!!! I used to cry when getting up at night to use the restroom ( roids make me pee all night ) , I would walk hunched over and it took effort to work into my limbs. One night I practically ran from the bathroom and jumped into my bed because I was cold and started crying when i realized how easily I had moved. How sad that when the  treasure of something as simple as a walk to the bathroom is taken away and then restored I didn't take more notice. ( shame on me ). I still struggle with the more minor joint pains such as rolling over every 30 mins at night because my hips hurt ect. I am pleased with where I am with pain
 
This being said. The fatigue!!!!!!! I tend to have pretty good times of feeling normal ( whatever that is ) but the fatigue hits every so often and slams me down from 3 days to so far the longest was recent at 3 weeks. I wish I wish I wish Immunosuppressants fixed that!. I lost 60 lbs from the drop in steriod use another plus. I take more medication than most elderly but what happens if I dont take them? Hell, I dont wanna know! I get sick easier now, I had pneumonia this winter after a flight to florida for vacation. The vacation kicked my tuches! Maybe Lupus patients shouldnt stray so far from home? hmmmmmmm I'm learning lol.
 
I'm trying to have a good attitude towards all of this. I bought myself a Kindle and it has saved my sanity! I read all the time and I can buy books online without having to go to stores. Good for shutins like us.
 
nice to "see" you all again turn

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/16/2011 9:11 PM (GMT -6)   
So sorry you had such a bad time of it, I am glad you are feeling better. I know reading really takes my mind off all my lupus troubles!

Do you take anything to help you sleep? I know it sounds weird to take sleep meds when we are fatigued and sleep all the time -- but my rhuemy suggested it a while back and good sleep at night really cut back my fatigue!!!

Good to hear from you,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 2/16/2011 9:19 PM (GMT -6)   
I sleep like the dead during fatigue storms. I think I'd be scared to make myself sleep harder? I do however take Ambian during times of pain and illness. Works like a charm!

Lyn ever want to borrow a Kindle book I will lend you some!

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 2/18/2011 6:19 PM (GMT -6)   
I started Ambien CR 2 years ago and the difference is amazing. Before the Ambien I was a very restless sleeper, often "waking up" more tired than I went to bed. Becuase of the pain I never fully relaxed (even in my sleep). My allergist prescibed the Ambien CR. Now when I sleep at night it is a "restorative" (is that actually a word?) sleep. I wake up refreshed and better able to cope with the pain. Hope you find some relief, soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.
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