Erin Kachmar and Ides, how are you?

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postal2
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   Posted 5/6/2005 6:09 PM (GMT -7)   
Hi Erin and Ides, just thought I would ask how you are with the AS? I am pretty much the same, although I am having a little more pain with only the 1 Arthrotec now. I am sure I will be taking 2/day before long. sad   Hope all is going well for you two.. Oh, and Ides, yes, that website is a great site! Thanks! L&H, Gail


 

Have an awesome day and know that someone thought about you today. . . . . . I did

Post Edited (postal2) : 5/7/2005 3:48:41 PM (GMT-6)


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/6/2005 9:33 PM (GMT -7)   
Hi Gail! Gee, all these diseases are just so much fun. Three days this week with doctor appts and xrays. Next week, an echocardiogram, ultrasound of my shoulder, and a mammogram - all on different days. Next year I swear on the portion of the income tax form that asks for occupation, I am listing "Professional Patient."

Seriously, more joint problems discovered. Rhemmy says it's not AS related, but I posed the question over there and got disagreement from the experts. Am I surprised? No...

Hope all is well with you. --Ides
CD for 25+ years; finally Dx 2004. Also have spondyloarthropathy associated with the CD. All the clues were present for years and no one put it all together.
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erin.K
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   Posted 5/8/2005 6:23 PM (GMT -7)   
:-)  hi there Gail. hope all was well today. happy mother's day too! oy, last nite i had the WORST back spasm from the AS. it was faint at first (we were laying on the couch) and then it got stiff and crampy....so i changed positions and a minute later the crushing spread up and around and i couldn't breath cause it hurt my back to do so...was one or if not the worst flare up ever! my boyfriend thought he had to rush me to the hospital. but i chewed a diazepam and layed on my back and it went away in like 10 minutes. excrutiating, but i knew it would eventually go away, so i didn't panic...but i think i scared my honey! very sore today still and having trouble standing.  thank you for your concern! other than that it was a pretty awful week but ut's in the past now and i'm in good spirits. how are you? anything new? tomorrow i have an exam for school and picking up my bloodwork results from last week. hoping for warm weather smurf want to stay outside! can't tolerate the damp cold! COME ON SUMMER yeah take care gail. talk to you soon!
erin

oreo
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   Posted 5/10/2005 6:36 PM (GMT -7)   
erin, was reading a book today and one of the characters had AS. One scene described him laying on the floor of the bathroom moaning and not being able to move. He also desribed the wrap around pain and not being able to breathe. I was thinking of you as I read it. To me that would be horrible to live with. I think I have it bad sometimes but it is nothing compared to what you go through. I am thinking of you. Hope the pain gets better really soon.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
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erin.K
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   Posted 5/10/2005 7:59 PM (GMT -7)   
Hi there Oreo. that's bizarre that a character be written with that! the only people in history i've heard having ankylosing spondylitis were Hank Williams, and biographers still not sure if JFK had it. it is terrible. the bad thing is i know it will happen every now and then (usually anywhere between 1 to 5 times a week); but the good thing is I KNOW IT WILL PASS! it takes a while to ease down but it does eventually. i just wish it would go away FOREVER! imagine 2 trucks attached to large hooks pierced at your lower back and sides....then have those 2 trucks drive in opposite directions....that's kinda what it is like....my mom said that's how she felt when she was in labor with my sister, she had bad back labor (but an epidural came in handy shortly after). i usually wait 1 or 2 minutes to see if it escalates, normally it does! and then i have to chew a 5mg valium with water to stop the spasm...sometimes it takes 2 of them. had not experienced any since saturday nite. need a few days without it! thank you for your thoughts, what book are you reading? i don't know of too many people who suffer from this, i would like to read something like that. what's new Oreo? i want the summer to arrive already! have a goodnight! hugs.....erin

erin.K
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Date Joined Mar 2005
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   Posted 5/11/2005 1:37 PM (GMT -7)   
Got my labs back! i did well! my wbc's are low normal. lymphs are high normal and all is petty darn good! we're thinking that taking an enbrel vacation for 4 weeks built my blood up again. was terribly immunosuppressed, but i can be on enbrel again now for a while....just have to watch my wbc's. wishing all a peaceful afternoon. oh, Boo where are you? i hope you're ok, i know you were feeling not so good. just know that my thoughts are with you and am praying you feel better soon!
sincerely,
erin

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/11/2005 11:06 PM (GMT -7)   
Well, the rheummy reversed himself today. It is official, I have AS. The tendons in my knee and heel are so inflamed I am back to using the cane and forbidden to exert for fear of tendon rupture. He is calling the GI to tell him he thinks I need Remicade every 6 weeks, possibly 4. Beginning intensive PT to try and get some relief from the inflamed tendons. Can't take prednisone since I am steroid intolerant and have AVN. I think I am now finally officially depressed. I knew this would come but was not mentally prepared. I know others are far worse than I, but am still allowing myself some quality pity party time. Health to us all! --Ides
CD for 25+ years; finally Dx 2004. Also have spondyloarthropathy associated with the CD. All the clues were present for years and no one put it all together.
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erin.K
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Date Joined Mar 2005
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   Posted 5/12/2005 8:38 AM (GMT -7)   
Ides,
you're more mentally prepared than you think. from reading your posts you have great insight about yourself and the disease process. do you feel that the steroids weakened your tendons? i know that is a risk while on prolonged steroid use. what is AVN? i'm not faniliar with the abbreviation. i will pray for you ides. i hope a lot of mental strentgh and stamina comes your way. AS is tough! i hate having to deal with that on top of RA. like last saturday nite i had a bad spasm attack in my lower back and it wrapped around my sides and ascended upwards to the point where i couldn't take a breath in. almost a ER visit. i was hoping the enbrel would alleviate some of the AS, but the only thing it did so far is allow me to stand straighter. perhaps the remicade will help some. and also, it's not pity! we all have legitimate reasons for remorse and sadness! it comes along with the disease. everything that is physical....is mental as well. i remind myself everyday that i didn't do this to myself and that i also didn't ask for it either. these things happen to the best of people. out of all the people in the world, you and all the rest of the folks here deserve nothing but peace, health and pain free days. i wish you well with PT ides! will be thinking of you.
sincerely,
erin

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/12/2005 4:59 PM (GMT -7)   
Erin,
AVN is avascular necrosis. It is basically bone death. I have spots on the head of each femur that are necrosed [dead]. This is from steroids in the past. Thanks for the kind words. I am flaring so bad I now need two canes to walk. Sorry this is so short, but not feeling very good. Ides
CD for 25+ years; finally Dx 2004. Also have spondyloarthropathy associated with the CD. All the clues were present for years and no one put it all together.
Please help support this forum.   http://www.healingwell.com/donate/ 


oreo
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Date Joined Feb 2004
Total Posts : 528
   Posted 5/16/2005 1:37 AM (GMT -7)   
Erin, the book I was reading was called "the other daughter" by lisa gardner. Is was a book about a girl that was kidnapped as a five year old and another girl that all of a sudden appeared 4 years later in a hospital that happens to become adopted by the family that lost their first daughter. Kind of a suspense/detective story. I really like Lisa Gardner as an author because she writes very gripping tales. I don't like the language that much but it is hard to not get it these days unless you are reading Christian Fiction, which I read alot.
Hope you have been spasm free.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


erin.K
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Date Joined Mar 2005
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   Posted 5/16/2005 12:31 PM (GMT -7)   
smurf  spasm free? WHY YES I HAVE BEEN SPASM FREE SINCE LAST THURSDAY NIGHT! thank you. it's like a vacation tongue sounds like a very intriguing book. Oreo, if you don't mind me asking, exactly how does christianity differ from catholicism? i never adapted to any particular religion...although i LOVE to study all types of religions! i was confirmed and all....@ a lithuanian church, mom's episcopalian, father's Russian orthodox. but if i was baptised, communian and all that all catholic right?  i find good and peace in all worships...everyone has a unique and special feature. as an adult i'm a "NIELIST"  that is , i participate in the "Holly Holy Church of Diamond"  tongue i love niel diamond! big fan, saw him 4 times already. his best show was right after september 11th 2001 @ madison square garden in NYC, very moving and patriotic!  right now, there is no plan in pending for redeveloping the downtown area, it's still a bit of a mess....i think they should make a beautiful park with trees and fields and botanicals. i live right across the bay from lower manhattan, have the statue of liberty right in my backyard almost! Is Canada nice? everyone i know that's been said it's like a very CLEAN U.S.A.!
hugs, erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/16/2005 12:38 PM (GMT -7)   
Hi there Gail. Hi Ides! how's everything this week? Ides... i recently started experiencing ligament inflammation. WOW! terrible, when i bend down, it feels like my shoulder is slipping out of its socket...and the pelvic area is super sore. are you still taking steroids? i started taking 81mg baby aspirin...doc said i should be on an NSAID consistantly and i cannot afford anymore Mobic or Rx meds. so i'm still with enbrel, aspirin, fish oil and darvocet. very much in severe pain still, just had to take 2 darvocets now and 3 lidodoerm patches and heat. perhaps he can set me up with boxes of samples. the NSAIDS alone provide NO relief at all. What else do you take for pain and inflammation?
till later. have a nice afternoon...in my thoughts and prayers for good days with plenty of comfort! erin

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/16/2005 1:02 PM (GMT -7)   
Erin,
So sorry you are suffering with the ligament inflammation. My tendon inflammation has gone from just the right knee and Achilles on last Wednesday, to both knee, ankles, my right elbow and wrist. Frankly I am miserable. I am in a bad position when it comes to meds forthe inflammation. Basically there is nothing I can safely take. Aspirin and NSAIDs are big no-nos in someone with Crohn's Disease [which I have]. That leaves only prednisone and I cannot take that either because of the avascular necrosis in my femurs. The doctors fear that more prednisone could cause more bone death. My GI did script me for a short course if I had a Remicade reaction but so far have not had a problem. I am waiting to get my Remicade infusions moved up from every 8 weeks to every 6. In the meantime, the rheummy is sending me to PT for ultrasound and deep heat treatments to get me through until the next Remicade. I am not sure how much longer I can take this. I usually take Tramadol for the pain but it is not helping so am back on Vicodin. Hope you get some relief soon. --Ides
CD for 25+ years; finally Dx 2004. Also have spondyloarthropathy associated with the CD. All the clues were present for years and no one put it all together.
Please help support this forum.   http://www.healingwell.com/donate/ 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/16/2005 1:09 PM (GMT -7)   
sad  hanging in there with you IDES! i had to take 2 darvocets for the pain...drowsy now....but i hope you get your treatments soon, this stincks having to live in pain. plus with you having crohn's it's more difficult. sending you smiles and good vibes
:-)   :-) :-) :-) :-) :-) :-) :-) tongue tongue tongue tongue :-) tongue :-) cool cool erin

oreo
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Date Joined Feb 2004
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   Posted 5/17/2005 6:58 AM (GMT -7)   
Ides, do you wear orthotics? Just a question because I suffered from ligament and tendon inflammation in my ankles, feet and knees about 1 1/2 years ago and my rheumy suggested orthotics. I went and got fitted for them and it took a few months but the swelling started to go down. I now notice that if I wear my sandles too much the swelling starts again. The orthotics just help to keep your feet and legs in proper alignment so that there is no additional strain on the joints. Not a cure but definately a help. Its something that you could try that is not a medication. It may or may not help. Talk to the PT about it. That is if you don't already wear them. The ultrasound and deep heat treatments are wonderful. I loved going but hated the reason why I had to. Again not a cure but helps a little.
Wishing you pain free days.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


oreo
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Date Joined Feb 2004
Total Posts : 528
   Posted 5/17/2005 7:19 AM (GMT -7)   
Erin, in response to your question catholism is christian. Any church that believes in Jesus and that he is the Messiah and rose from the dead is Christian. The two main branches are Catholic and Protestant. The Catholics have thier Patron Saints and Mary and such, the Protestant church focus more on the Trinity, Jesus and our relationship with Him. Having said that there are many demoninations within the Protestant church that put the emphasis on different parts of the Bible and its teachings. The United Church (here in Canada) is one of the most Liberal of the denominations, and the Pentecostal and Evangelical churches more conservative in their theologies. I am unsure how the CAtholic church is divided but I am sure you would find similar things happening there as you have many "orthodox" churches in that mix.
The Christian fiction books I read are just like the mainstream ones but the subjects and language are a little cleaner. For example there are no actual swear words printed, (you could have a character "curse" but all you see is the word "curse", ie John cursed at the TV), there are no intimate scenes between unmarried people, often there is a "church" involved with the characters and often one or more characters have a "relationship with God" as the main idea behind their character. Other then that they are about the same. I like to think of it a pure writing. I know the words but really don't have to read them. My favorite author is Dee Henderson. She writes alot a books that have "professionals" in them. Her one series is about a family that became a family when they all ended up in an orphanage and they decided to change their last names and become an official family. Twenty years later you meet them as they are professionals and each book focuses in on the job of one sibling. There are firefighters, doctors, cops, trauma psychologist, pathologist and a US Marshal. I call them romantic fiction. Her other series focuses in on the Military and the different aspects of that. One book deals with the fighter pilots, another the SEALS, and one deals with an FBI agent. Again probably falls under the genre of romantic fiction. When I am really sore I like to curl up with a good book that I can really get into the characters and I find it helps me to forget the pain.
Sorry this post is so long. Hope it answered your question. If not ask away, I do not have all the answers but maybe someone else here does. We do have to stay away from prosetilizing(?) but we can have honest "religious" questions. So long as no one is trying to "convert" someone the topic is safe. No one religion is right for everyone so we need to keep the discussion on a purely academic level.
Hope you are now pain free.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/17/2005 2:12 PM (GMT -7)   
very good Mrs. Oreo. i think alot of people will find your post on the above very informing! i leave this site....educated!
erin
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