Might have a diagnosis!
#318395 - 11/12/07 07:40 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Yes ladies and gentleman, I am NOT just fat and depressed, that's right, Oh, I AM actually sick, pretty darned sick at that!!
When I saw the dr last Friday am, she sent me directly to the cardiologist who sent me directly to the hospital, do not pass go, do not stop home for clean panties!!!!
My heart rate, resting, was over 150, my blood pressure had fallen from the 170's/90's to under 100/50! They admitted me, starting testing, reran the chest cat scan and found that I had a ton of lymph nodes growing all over my lungs. Ok, lets now do an abdominal cat scan and gee, guess what, more funny growths in the abdomen and groin area.
Got everyone excited, even the cancer doctors came to visit. To make a long story a tad shorter, I either have sarcoidosis, read here http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis .html
or I have lymphoma.
They did a biopsy, under general anesthetic. cut me just above my adams apple, went fishing and brought out a bunch of samples of what I am growing. Off to the lab with my tissue and we want until Tuesday now for the exact answer. However, the drs said it looked like sarcoidosis and I have all the right symptoms, down to the eye problems, the racing heart, the dry cough, the list goes on.
I am back at my office today despite pleas from the drs not to, I need my job! I feel like a mac truck ran me over. My heart rate is still extremely high and any movement sends it soaring even more. My face and neck are still swollen from the biopsy. I am hoping to get those results tomorrow. Both options are crappy and I really would like an option C here but if its the sarcoid, than it may be the answer as to why I have been feeling so bad for so long! 
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Taking it one day at a time.....
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Michelle,
I pop in from time to time, and I've been reading your posts. Please know that I am praying for you!! I'm sending many gentle hugs for this most difficult time. Hang in there!!
Kim
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God is Faithful!
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A diagnosis is a good thing, so you know what you're dealing with. Your body is telling you to take care of yourself, and rather strongly. Heed it's message. Be gentle, take time off, heal yourself. The body has remarkable healing abilities. Read books that are uplifting, about people who have overcome great odds or illnesses. Have you tried writing your feelings down in a journal? That can be healing, too. Someone wrote, (I think is was Richard Bach in his book "Illusions") that we are never given a problem without also being given the ability to overcome it (or is it the solution? I don't remember). Anyway, you are stronger than you think. Good luck!
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Michele! WOW! I just read up on sarcoidosis and those symptoms really match yours!
I can't believe you went back to work. I totally understand though -- but please take it easy and if you start feeling bad (or worse!) go home or go to the hospital. Is it possible for you to go on FMLA?
Big hugs! I hope things go well at the doctor's tomorrow.
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Oh wow!
#318408 - 11/12/07 11:00 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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I read up on the sarcoidosis and I agree with you it does seem like they might have a winner. I bet you're like: what took you freaking doctors so long?!?!?!
I'm thinking of you and hoping they can give you some sort of good news in all of this when it comes to prognosis et.c.
Big hugs,
Ulrika 
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I hope this is your answer. While you may not get a third option, at least you'll know what you're dealing with and be able to move forward. Good luck!! 
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If you're not dead, you've still got time.
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Michele,
I'm just so happy that you're being taken seriously and properly evaluated! I hope you get answers!
(((Hugs!)))
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Christine
Those who can do; those who want it done better teach.
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I just read your other post Michele and, I'm not one prone to crying, but it really made me cry! Now reading this one, I am sure you feel somewhat relieved knowing what exactly may be wrong. It's so much easier to move forward once you have a diagnosis.
On a side note, I am so sorry that you are going through all this and truly hope you get some reprieve from your suffering soon! I find your strength inspiring. I've been wallowing in my own pain and b.s. lately with my IBS and reading what you are going through makes me realize that while my stuff is bad, there are people out there enduring far worse suffering. You sharing your story gives me some courage to keep trying!
Take care and best of luck to you as you begin to heal!
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WOW, it would be wonderful if you could finally get a diagnosis...sure hope you get some workable answers/results on Tues.... {{hugs}}
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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I feel funny saying this is good? But I know that you have waited so long to have a diagnosis. Maybe now you can get your life back on track and start to feel good. I am praying for you! *hugs*
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Wow, Michele, a true diagnosis!!! I've been praying that the doctors would finally be able to figure it out. I know that neither are good options, but I also know how comforting it can be to have a diagnosed condition...and then a plan of action of how to deal with it...and best of all the hope of feeling better!!! Let us know what the test results show. And I hope you get good treatment soon. You deserve so much to feel better. We are all sharing in your success of a diagnosis right now. It's so wonderful! Good luck as you journey through the rest of this process. And keep us posted when you are able. Big Hugs!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Sarcoidosis!! The biopsy did not show any malingnancy!!!!! The bad news is that I can not get to see the pulmonologist until Friday to find out about treatments. Saw the internist today as she is following the blood clots and the heart problems for the time being. My resting heart rate was 127! It just won't come down. She is adding yet another medication to see if that helps but I think its because of the sarcoidosis, the growths are right on my lungs so it only stands to reason it would make breathing much harder?!
I made it to 4pm at the office yesterday, than went home and slept for 3 hours and went back to bed at 9 and slept until 8am. I am SOOO tired.
At least we are getting some answers and moving in the right direction, finally!
Thanks everyone for the kind words and support. As always, it means so much to me!
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Taking it one day at a time.....
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Can I say... WOOT?! I'm so happy that you finally, FINALLY, have a diagnosis and it's not cancer. Yes, it does feel like you're moving forward and going to get some help. Big hugs, Michele!
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That's great that there is no cancer!!!!!! How exciting to keep moving forward towards getting better. Hopefully that thought will get you through the next few days of waiting. Come on Friday!! I hope you can start treatment ASAP. Michele is getting well!!!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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Finally, an answer!! I am so glad to hear that there is a name and a path you can follow with this. Hang in there.  
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If you're not dead, you've still got time.
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Like everyone else, I'm just so happy that you are finally getting some answers! Big (((Hugs!)))
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Christine
Those who can do; those who want it done better teach.
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I'm so glad for you that you're finally getting some answers. I have been keeping you in my thoughts. Hey...a diagnosis is a start, right? After all this time, you can now put a name to this thing and start your road to recovery.
Hugs.
Lauren
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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hip hip hooooooooray!!
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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I am so glad you are finally finding answers Michele. More than anything I'm sure it has been unbareable for people to keep telling you it was all in your mind. I hope this diagnosis brings with it physical relief and mental peace.
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Re: The answer is
#318546 - 11/13/07 06:51 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I don't believe it!! AN ACTUAL DIAGNOSIS!!! Oh Michele!! I'm so happy for you!! A real answer!! Not that I'm at all happy you are sick, but you FINALLY have an answer!!! Hurrayy!! Now, on to getting you better!!!
HUGE HUGS!!!!!!!!!!!!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Good! Now maybe those doctors can start taking care of you! I hope now you can start putting your life back in order!! *hugs*
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I'm so happy for you. I hope you make that doctor work for you!! You should be his only patient!!
Race you to "Medical Diagnosis!"
~nelly~
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Re:Chinagirl
#318608 - 11/14/07 10:44 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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How are things with you?
Yeah, if I heard one more time I was fat and depressed, I was going to hurt someone!!!!!  The dx pretty much blows but at least I can move on and no one can tell me its all in my head!!
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Taking it one day at a time.....
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The dx pretty much blows but a least its an answer and I know I am not mental! I am not too happy about the scar on my neck. The sterostrip tape stuff they put on after the biopsy came off today and the incision is over an inch and pretty angry looking yet. I stopped at the drug store and picked up some scar cream. I have a lot of keloid scars and the front of the neck wouldn't be a pretty place to have another!
I see the pulmonologist Friday to go over treatments. Steroids are the first line defense and I say NO WAY, I JUST got off them after over a year and refuse to take them again! The next treatments are pretty much the same sort of thing I was going for the ra-methotrexate and imuran seem to be to the next preferred combo. Last time I did the methotrexate, over half my hair fell out, I won't make a pretty bald girl but if thats what it takes to get better, so be it! 
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Taking it one day at a time.....
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Re: Michele
#318659 - 11/14/07 05:17 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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You know, I luv ya. Despite everything you have gone through these last couple years, you hang in there. I had to smile reading your post; yeah, a scar on your neck sucks. But it means that the dr. finally found the reason you are so ill. So think of the scar as a battle wound - a battle you can start winning!! I'm just sorry that no-one figured out what you have until now.
You are an amazing person - look back - you already made it through so much that handling this treatment is going to be easy for you. Not easy physically, but mentally. You know how to react. You know how your body reacts to all the chemical cocktails you have to take. And you are strong. You have made it this far, you will survive and go on.
I can't really express in writing how happy I am that you finally have a real diagnosis. I was ready to put you on "Diagnosis Unknown" - you're the perfect candidate.
Take care of you and all the best for the upcoming appts and treatments.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Did your doctors mention anything about avoiding sunlight and vitamin D? I read somewhere that that may help someone with your condition............
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Hey Michele,
Well, like the post subject says, it's about darn time! I am so so so glad that you finally have something that really sounds like the answer you have been waiting for for all this time - and thank god!
I didn't know what sarcoidosis was, so I took a look at that link and.. wow, what a bizarre thing to happen! But then like you said, it does seem to explain a lot of things. I sure hope that the treatments they get you on start helping right away and you can finally, finally start to feel better. The emotional rollercoaster you've been in has been so intense, I really hope this is the beginning of smoother sailing for you.
I also wanted to say that I really hope that through all of this you and Will have found some peace in your relationship in whatever form is best for you so that you can really focus on your health and getting the life you deserve back.
Lots of love and support as always,
Steph **hugs**
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~~I'm not crazy, I'm just a little unwell-I know right now you can't tell~~Matchbox 20
IBS-D,pain.
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Well, on the plus side you have a disease they're always talking about on the TV show House. That's exotic at least. :P
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I'm so glad they finally found the real problem this time! I'm sorry that you're sick, but glad they know what it is now. It's about time. Here's hoping your treatment goes well & you can get back to your life!
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IBS-A...I can never make up my mind
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Hmmm, nope no one has mentioned it but I put it on my list of questions for the dr tomorrow!!!
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Taking it one day at a time.....
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Michele!
I haven't been on here in ages, but I lurk from time to time. I am so happy that you finally have a diagnosis. I think about you a lot and I was sorry to hear about what happened recently. I am glad that some good came out of it. I am thinking about you and I hope you start to feel better soon.
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Amanda
I live in the Big Apple, but I don't eat the skin
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Re:Chinagirl
#318735 - 11/15/07 10:48 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Moving with a little baby must have been exhausting! Heres hoping the little guy learns to sleep a bit longer!!!
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Taking it one day at a time.....
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Thanks Steph, it IS about darned time!!!!!! I am a little leary because I have been on some of the meds they suggest and they have a ton of side effects, like nausea, gi upset(its not like I already don't have enough of that!) and hair loss to name a few!!!
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Taking it one day at a time.....
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It has been a long time since I have seen you around! Where have you been hiding and whats new?
Thanks for the thoughts!!! I am happy to be moving forward in the healing process.
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Taking it one day at a time.....
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Re: Cassandra
#318738 - 11/15/07 10:54 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks for all the kind words. Yes, the scar will be my new battle scar and as you said, one that I can start winning. I feel pretty positive about it all. IF I lose my hair, well so what, I never really liked it anyway!!!
I often thought, over the past few years about all those mystery dx shows and what the procedure to get on one was!!! LOL! Lets just hope this is the ticket and that won't be necessary!
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Taking it one day at a time.....
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Everything is new with me ... Don't want to hijack your thread so I will keep it brief. I finished law school last year and passed the NY and NJ Bars, took a trip to Asia with two girls from school, came back, started work, broke up with then-BF in January ... and met someone in February. We got engaged in April and we are getting married May 2008! We are living in Brooklyn now and life is very good. I've been practicing law for a little over a year and I like it. My IBS is really under control as long as I am careful. It's bad when I'm stressed out and when I travel, but othewise OK. I talk to Ashley just about every day still, and she's doing great too.
Again, so glad to hear that you are on the road to recovery!
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Amanda
I live in the Big Apple, but I don't eat the skin
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Re: Oh My
#318740 - 11/15/07 11:05 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, congrats on everything!!!! Sounds like the last year has been very kind to you!!!! Glad to hear life is treating you very well! You really need to post a full update for everyone, thats too much good news to keep to yourself!!!!!
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Taking it one day at a time.....
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Here's where I read that info........
http://www.mercola.com/2002/sep/14/sarcoidosis.htm
By the way, it has been written in a book of mycology (study of fungus) that sarcoidosis can have an intimate link with fungus. Didn't you at one time wonder if your illness could be attributed to mold? Interesting coincidence? I still think you should experiment with the antifungal route and see if your symptoms don't improve. Take care. I really hope you get the help you need. I'm thinking of you all the time and am always checking back here to see how you're doing.
Kim
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Very interesting! I am very sensitive to the light. I will print that out and take it to my next appt!
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Taking it one day at a time.....
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At least the known is so much better than all the suffering you've endured these past few years. I know it's not a great diagnosis, but at least you can now have a proper treatment plan. Thank goodness!!!!!
As always, you're my heroine. Be strong, girl!!! You WILL get through this. Love and hugs, and always my support, A.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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Oh Michele,
I have not posted in forever but I have been watching your posts and praying for you.
What a blessing and relief that you finally have an answer. All I can say is IT'S ABOUT FREAKIN' TIME!!!!
I am so happy for you but also so angry that it has taken so long. It is absolutely inexcusable that so many doctors overlooked this over and over again. I hope you let the particularly mean doctor who told you "you're just fat and depressed" that you do have a legitimate diagnosis now. The mean part of me wants to send him/her a cactus with a sign that says "Sit on it!" Sorry, I'm just feeling really feisty right now.
I will continue to watch for your posts and pray for you. I truly hope that this correct diagnosis will enable your doctors to give you proper and targeted treatments that get you back on the road to health and wholeness.
This Thanksgiving, I'd say this is one of the things I am grateful for. It does my heart good to see someone like you finally get a break!
Ok, back to my happy dance for Michele!!
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Oh Michele I'm so glad you finally have an answer! I wish you hadn't through all you have but hopefully you can move forward. Here is a big ((((hug))) for you!
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Michele
#318949 - 11/17/07 04:23 PM
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Janey
Reged: 10/25/03
Posts: 1716
Loc: Maryland
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I am so glad that the docs have finally found out what is wrong and that they can treat it. You have been suffering for a long time and not getting much support from the medical community.
You are such a strong person to go through all of this and still go to work every day. You are amazing!!
Lots of hugs sweetie,
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Janey
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I only wish the best for you!god bless
emmasmom
ibs-c
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wow, well thats alot of stuff. But I'm glad to see your making headway! I really hope that they get all this stuff figured out for you! Hope you start felling better soon !It's been toooo long girl!
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Kiwi
IBS-C
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OMG, that is too funny " The mean part of me wants to send him/her a cactus with a sign that says "Sit on it!" Sorry, I'm just feeling really feisty right now."
Thanks for all the well wishes. Not sure yet what I will do about all the crappy dr's I saw. I am just putting all my energy into getting better again!
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Taking it one day at a time.....
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I have been on the new medicine, Imuran and a steroid pack since Friday night and I feel relatively ok. Hungry as heck from the high dose of steroids but the imuran doesn't seem to be making me feel more ill or anything so good there!!
I seem to have a zillion dr's appts coming up in the next month or so but the ball is moving in the right direction and I am determined to feel better soon!
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Taking it one day at a time.....
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***********************
If you're not dead, you've still got time.
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Taking it one day at a time, right along with you.
Love and hugs always, A.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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So glad to hear. You're on your way, Michele. You've got doctors that are supporting you. And you have all of us. I totally understand about bad doctors and not giving you the right diagnosis. But you have the right attitude. They are not worth your time even thinking about. Put all of your energy into getting better. We're all cheering for you!! Go, Michele, Go! Keep us updated as much as you're able. We love to hear about every small step and little victory along the way. They are all worth celebrating.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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Wow, wow, wow michele!! I haven't been here in forever, and found your post. I'm SO happy that you finally have a diagnosis and can get started on the road to recovery.
Take care of yourself!!!!!!!!!
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~jules
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My heart rate is down to a more normal range after switching my medications around a bit. It was running in the 120-130's at REST but its down to a more reasonable 80's range now-its a huge improvement in how I feel!
I am still very short of breath and get winded very easy, no real physical activity for me as the sarcoidosis has caused so many lymph nodes to grow in my chest and on my lungs. I seem to be tolerating the imuran ok which I am very happy about. I still am tired and need a good 10 hours of sleep at night but thats doable!
Work is slow which is a mixed blessing as it makes for some VERY long days!
We are leaving Thursday am to go to the in laws, its a 5 hour drive, ack! Not really looking forward to it but will try to make the best of it!
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Taking it one day at a time.....
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Michele- Glad to hear that some of the meds are working and that your heart rate is down now. I am also glad that you have doctors working with you to help get you feeling better. I want to wish you a Happy and Restful Thanksgiving! (I will be busy with Ava's b-day party this weekend! Can you believe she'll be 1 already??)
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This is what I get for not checking in... This is wonderful news, Michele! I'm SO HAPPY that you finally have some answers! I'm going to finish reading all these posts now...!
Take care of yourself and feel better soon! You are such an amazing woman.
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~~~~~~~~~~~~~~~~~~~~~~~~
Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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***********************
If you're not dead, you've still got time.
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Hay Michele
#320773 - 12/15/07 11:24 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Hadn't heard from you for a while so just wanted to know if the in-laws had let you come back home. Miss you! Post when you can, sweetie.
~nelly~
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Yeah, I escaped! I am ok. I am waiting for the pulmonologist to call. I saw him Friday and he is trying to get me into some sort of study or protocol. I have exhausted all the drug options available and he is calling two hospitals to see what else is available.
Otherwise, just trying to get back into the swing of life. I am trying to work out again but its slow going after being sedetary from the pain for the past couple of years. I am on a diet and trying really hard but the weight is so slow to come off. I am only eating about 1200 calories a day and just can't eat any less or I might kill someone from hunger!
We didn't get up x-mas decorations this year either, first I had a cold than I gave it to Will, which he was ever so grateful for! We will exchange just a couple of gifts to keep from spending much. I think we will just hang out at home and have a nice dinner together. What are your plans?
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Taking it one day at a time.....
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Quote:
I am trying to work out again but its slow going after being sedetary from the pain for the past couple of years.
How is your pain now? Are you feeling better?
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***********************
If you're not dead, you've still got time.
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Re: Hay Michele
#320904 - 12/17/07 05:13 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I absolutely hate the holidays so I'm hibernating and waiting until it's all over! No stockings, no presents this year. I just refuse!
BUT, I did get myself a George Forman grill, the new red one, and I'm trying to make smores with it. That thing just is dying to be misused. There's nothing like snapping it shut on some hunk of cold thing and delighting in the sizzle.
I also went to an office xmas party which sucked. The agency who is hiring me for my new job is d*cking me around and won't call me when they say they will.
But on the good end, I've grown addicted to marshmallow fluff and actually enjoy zapping the heck out of my dissolving back teeth with it!! Good stuff!
~nelly~
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Well this sounds pretty ok (compared with what it's been like for you in the past I mean). Glad to see you're feeling a bit better.
Big hugs,
Ulrika
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That's great that you are able to start exercising, Michele. Even if it is tough to get going I'm sure it's nice to be able to do something...no matter how small. Hopefully your docs continue to help and find the right meds/treatments. And hopefully things are going ok with you and Will. Good luck with the diet, and have a blessed Christmas!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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Re: Hi Mary
#320957 - 12/18/07 10:11 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Yes, I was feeling very good about getting moving again. Today, I feel not so good. I am pms'ing pretty hard and should have never stepped on that stupid scale but it said I had gained back the 3 pounds I had lost.
Will and I are still having issues, we just haven't talked or dealt with anything. I saw my shrink this morning and she offered to have us both come in Saturday so she can help us at least get the issues out in the open. I feel very overwhelmed and stressed.
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Taking it one day at a time.....
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Taking it one day at a time.....
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Congrats on the new grill! We have an old one, must be one of the first ones out and we used it like crazy at first, now its in the back of some cuppboard, forgotten!
Enjoy the marsh mellow fluff! I have never been a fan but whatever makes ya happy!
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Taking it one day at a time.....
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Re: Hohoyumyum
#320960 - 12/18/07 10:18 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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The pain is less than before. I detoxed off the oxycodone and now just take a vicodin when needed which hasn't been too often. I still hurt but it is less. My hands and feet are still swollen but not as painful. I guess it all went from a SCREAMING 8-9 on the pain scale to a more tolerable 5-6. A "normal" person would be complaining but after hurting so bad for so long, it all becomes relative!
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Taking it one day at a time.....
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I'm glad that the pain is less severe and I hope that it continues to diminish. I'm sure things will eventually get worked out and you'll be feeling much better. It seems that things are moving uphill.
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***********************
If you're not dead, you've still got time.
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Grill
#320991 - 12/18/07 04:24 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I had an old Forman grill too! Mine was blue. I dreaded using it, tho, because it didn't have removable pans so whenever I had to clean it, I just wanted to throw it out. Which I eventually did.
~nelly~
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