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Akie 
8:46am, October 9, 2009
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About Me
Akie
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About Me
I am a Registered diet tech, and a certified personal trainer & spinning instructor. I totally embraced health and fitness after brain surgery in '99 caused me to lose use of my right leg and I had to learn how to walk again. I gave up the late nights, fast livin', junk foods, and my slug approach to exercise, lost 50 pounds and three years later, BAM! I was dx with crohn's in '02. Was that the thanks I got for all my healthy efforts?! I was pissed, but I try not to let it get in my way of doing the things I want to do. Every year it seems things get a little worse for me health wise. I also have plantar fasciitis, peri-oral dermatitis, osteoporosis, bursitis, endometriosis, GERD, gastritis, and NF1. My newest dx is Sleep Apnea; Geez! But I'm still going at it! I've been married to a wonderful man since'98. He understands all my ups and downs, been with me through it all. I have 3 daughters, all grown & beautiful.
I am a Registered diet tech, and a certified personal trainer & spinning instructor. I totally embraced health and fitness after brain surgery in '99 caused me to lose use of my right leg and I had to learn how to walk again. I gave up the late nights, fast livin', junk foods, and my slug approach to exercise, lost 50 pounds and three years later, BAM! I was dx with crohn's in '02. Was that the thanks I got for all my healthy efforts?! I was pissed, but I try not to let it get in my way of doing
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Interests
Renovating my 90 year old house, exercise, cooking, jazz, crossword puzzles
Renovating my 90 year old house, exercise, cooking, jazz, crossword puzzles
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Journal
This entry is private
This entry is private
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Hugbook
Prayer
hopnig for dietary relief for you- ugg on having to start another medication! I know how serious the Humira can be- but to be honest- while I'm not glad to be out of remission- I'm relieved at not having to take pills 4 times a day, every single day. It's like a constant reminder that your not well, and there's a beast lurking right around the corner. I'm having a hard time jerking up my boot straps. How is the sleep apnea business? My sister just had the second night of her sleep study- should be getting her lovely machine shortly... How did the toe heal? Teh potty issues persist with me- I'm now on Miralax and metamucil twice a day, every day. My GI tells me I have to accept that my system will never be "normal" again- like I remember what normal is! I'm really hoping that the Humira gets teh joint pain under control so that I can get active again... I'm walking around at 62" and 150lbs... that's a tad more than the day before I delivered my son... UG!
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Sorry
Sorry to hear you had a setback! How are things now? Sulfazaline made me sick- fluid retention, High blood pressure, headaches.. the works- took my first Humira injection Friday- and I swear I can feel it working already.... Big Hugs- I know you will get back on track!
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Hope all is well with you? x
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Thanks. Every day is less and less of a struggle lately but still sometimes I still have to take it one minute at a time. I hope you have a good day.
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Thanks so much for replying - I get cross with myself when the cd changes upset me - and ever more cross with the stupid disease - not practical really - I do love your thing about - do one thing you love each day - I am going to adopt that, Take care and thanks so much again.
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Photos
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Support Groups
Close Crohn's Disease & Ulcerative Colitis
I was dx with Crohn's disease in 2002 on my 37th birthday. But I'm sure that I've had it longer. I haven't had a major flare in 5 years but I had a big one this spring('08). Other health issues include; brain surgery in '99 to remove a brain stem tumor (I had to learn how to walk again). I also have NF1, a genetic disorder. Those are the highlights. I have other medical issues but small in comparision. I love exercise, it keeps me sane. I teach Spinning and I'm a personal trainer.
Treatments
- Asacol Not Working
- First drug my doc tried when I was dx, broke out in a terrible rash all over my abdomen and chest!
- Avoid Certain Foods / Chemicals Working / Worked
- I have been gluten-free for the past 2 years, it really cut the bloating and constipation and I feel less sluggish. I also try my best to avoid sugar; it is the devil!
- Azathioprine Considering
- Not sure, I never had enough in my system to be theraputic, but I still take it. I've been in remission since April/May '09.
- Cipro Not Working
- had an allergic reaction red itchy rash
- Colazal Somewhat Helpful
- I guess it helped some. I was taking 9 pills a day and tapered off them. I haven't taken it in about 5 years.
- Dietary Modification Working / Worked
- keeping my diet lower in saturated fats & sugar has helped some. Eating lots of fruits and veggies makes me feel energetic.
- Flagyl Somewhat Helpful
- Stopped the frequent BMs in '00 but I think the dx was missed because of it. Two years later had a similar episode and took it again after being dx with Crohn's. Took it again '08 but had a metal taste in my mouth, white film on my tounge and extreme nausea.
- Prednisone Working / Worked
- I had the side effects but nothing is better for me to get things quite fast.
- Probiotics Working / Worked
- I swear by the acidophilus; I think it helps. I think the Activa type food products are a waste of money as there are probably not enough bugs to be helpful.
- Yoga Working / Worked
- It requires a lot of focus and being in the moment. Really takes your mind off of your troubles!
Close Neurofibromatosis
I was dx with a brain tumor in '94. The neuro doc ordered a Dermatology consult as I had a bunch of lumps on me (always were there) and some cafe au lait spots. I was told I did not meet the criteria to be dx with NF but I had too much crteria that they could not say no. So, I lived in limbo with out an answer for years. The tumor became cystic and I had brain surgery in '99. Then, in Sept of '05 I had DNA testing done and I'm postive for NF1.
Open Sleep Apnea
I have suffered from chronic fatigue for about 3 years now. This past year it has been at it's worst! I have Crohn's dx and everyone has just blamed the Crohn's and the meds. Finally, my Rhuemy suggested a sleep study and low and behold; sleep apnea! I'm new to all of this and a little scared.
Open DailyStrength Members Community
Since the most recent upgrade DS has been VERY slow for me. With everything, uploading pics, getting into a post to read it and respond, etc. It just took me 10 minutes to join this group.
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