Michele, ma belle
#331740 - 06/29/08 05:16 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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How are you feeling these days? Haven't seen you posting much. Was thinking of you today - my hands are loosening up with the warmer weather - wondered how yours are.
Hope you're hanging in there!!
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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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LOL!!! If only!! Remember waiting for Saturday morning just so you could watch cartoons!! Now, they have a whole channel just for cartoons! Hehe!!
I'm doing ok. Last week was really hard, the pain got pretty pain again but I had my infusion last Thursday and its getting better again. Its funny, even when I am having what I consider a relative good day, my hands are still swollen and hurt. Granted, they hurt less and sometimes the swelling is a little less but they are always visibly swollen. Crazy. Its funny yours feel better with the heat, the heat makes me worse, especially my breathing.
They had a hard time with my last infusion. I have IC, which is basically an irritable bladder (seems most every body part is irritable now a days!LOL!  ) So because my bladder was especially irritable last week, I didn't drink much and was a bit dehydrated. They had to poke me 6 times, rotter root around a lot and blew three veins. I finally got my juice as I call it though.
The nurses usually have difficulty with my veins but that was the worse. Remember, I go to the oncology ward so these are very practiced nurses! The nurses really want me to get a cath port surgically implanted in my chest but it seems that just having the port increases your risk of getting blood clots elsewhere in your body, they won't do it until its a last resort as I just underwent treatment for many blood clots. I am ok with that, I can handle the needle pokes and bruised arms, its small potatoes comparatively!
Overall though the treatments are helping. I seem to be having more better days. I am never pain free and have a lot of wacky crap but overall, I am ok.
Will and I had a HUGE talk about a month ago and we have been doing really well. That is really helping to cut my stress levels down and increase my overall happiness!
I am slowing trying to do more and become active in life again. Its been a long, hard road but I think things will work out. I will probably never be disease or pain free but at least now I know whats wrong and can work with learning to live with it! 
Thanks for asking!! Anything new on your end?
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Taking it one day at a time.....
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Michele,
I was just thinking of you too, wondering how you were doing. Glad to hear there is still improvment. And it's wonderful that you have such a positive outlook now. That alone can make such a difference! Sounds like things are going well with Will too. I'm sure that extra support really helps. I hope the treatments continue to help and that you continue to get out and get your life back. As we've all told you before, you're such a strong woman!!
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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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Yes, my attitude is much better and I am really trying hard to remember whats really important in life. My mantra for not getting upset is this I CAN NOT CONTROL WHAT OTHERS SAY OR DO, ONLY HOW I REACT. If I start to stress over something, I try to stop myself and think does it really matter that much? If the pain gets real bad, I go to survival mode, do whats only absolutely necessary like making it through my work day and getting home. Don't care if there are dishes in the sink, I need to rest. I really have to budget my time and energy which is very hard as I really want to do so much but I have to pick and choose what I do and rest. If not, my body protests very loudly and I end up miserable.
So, I guess an old dog can learn new tricks when necessary! LOL!!
I can't believe Rebecca is over 2 months already! How are you adjusting to mommyhood?
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Taking it one day at a time.....
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Hey Michele!
I'm glad that things with you and Will are improving. I know how much I rely on Thomas as my support. I couldn't do it on my own, so I understand how important it is to work things out with Will.
I'm happy that the treatments are helping, but sorry that your veins are so bad. Mine aren't great, but they're nothing like yours. Two or three pokes max! Lets hope wiht the continued treatment you will just continue to feel better - one day at a time.
You take the Spoon Theory to the max. You know what you can do and if you do more how exhausted you'll be. I'm glad you're able to leave dishes in the sink and rest. I'm actually doing more lately, finally I'm feeling better. I have spurts of energy even though my hands and arms are still sore I can manage to make dinner and do the dishes the same night, and still go out and water the gardens. It's just about managing everything without exhausting myself. I've been going to the chiro for 2 months now too, twice a week, to help with my shoulder and neck (sprained last May) and I think that having my spine straight is also adding to my energy level as the pain is less.
We had some flooding here at the start of June and unfortunately we had a bit of water in our basement too. So we decided to dig the basement on the back 1/4 of the house and replace the weeping tile and reseal the walls. Thomas started hand digging and soon gave up. We rented a small backhoe last weekend and got the weeping tile in. His dad came and helped seal the wall on Monday and since then we have been backfilling the hole by hand. His dad came over Sunday and yesterday and they finished that off while I trimmed the front hedge to nothing so we can fill in the low spots with topsoil as we also had 26 tonnes of topsoil delivered last weekend so we can re-grade the yard. We've got 2/3 of a pile left. So, we still have lots of work to do, but we have done a lot in the week. My forearms are sore from shovelling but it is a good ache. I've accomplished something.
We haven't had much humidity yet this summer which probably accounts for why my hands are better, but wait, August always is muggy and hot - I'm sure I'll be suffering again soon!! At least the swelling is down enough to put one of my rings on again!
Thanks for the update and for asking about me. It's my last day off after a 5 day stretch, but a short 3 day week to go back to work at least!!
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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Its great to hear you are doing better as well!!! I know there has been so much flooding, I see it on the news every night but luckily, have never experienced it myself. It sounds like it was a good opportunity to make some improvements on your house though! Good why to make a bad thing into a good thing!!
Its also good to have a sense of accomplishment!! I have pretty much given up the idea of ever getting my wedding ring on again but I am ok with that. I sort of go in spurts as well. I can get a lot done if I set my mind to it and take breaks often but than I have to rest for the rest of the week. I don't like not being able to do all that I used to but I am learning that this is just the way its going to be and I have to accept that.
Will actually hired a local girl to come in and help me keep the garden weeded and general yard work as I just can't do it all anymore. I am learning to adapt to my new life and I am trying to be happy with the things I can do rather than be upset about the stuff I can't. Its hard and I work at it everyday but I am getting there!
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Taking it one day at a time.....
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That is the right way to do it!! You can't control what anyone else thinks. That was one of the major things I learned in my last 2 years of couseling. I can only control myself and my reactions. I'm not responsible for anyone else's happiness or feelings. Total opposite of the way I think naturally. And even though I am doing quite well, I still have physical limitations with bowel stuff. And I still get frustrated about not being totally "normal". But I tell myself, this is my life...don't appologize for it or feel bad for telling peopel you can't do something. Just be thankful for the things you can do. And do what you can. I've really been focusing on that lately. Sounds like you have too. Keep up the good work.
I'm loving being a mom. It definitely has its challenges, but I know you can understand that any challenge like that is so worth it. I too can't believe Rebecca is almost 11 weeks old! Time is going by way too fast. I'm just trying to take things one day at a time and enjoy every moment with her.
Try to post when you can. I love to hear your updates...as do many others. And it's always good to hear your positive news. Even if you can't do a lot physically, you have been a huge inspiration to so many people. You should be proud of yourself. Most people w/o a single health problem can't do that! You have a great attitude and a strong mind.
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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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Hi Michele! So glad to hear you are feeling better these days! I always enjoy reading your posts, and it's so nice to read "happy thoughts" from you these days!!  Please keep us posted. Do you have to keep doing the infusions for the rest of your life, or how does that work?
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: Lisa Marie
#332078 - 07/07/08 11:55 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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As far as I am aware, yes, the infusions will be for life as this is a systemic, chronic illness for me. The majority of people with sarcoidosis go on to have spontaneous remission without it being too problematic. Than, us lucky few, who get the progressive, chronic form get to battle with it everyday. I read someplace that once you have it symptomatically and chronically for more than two years, the chance of remission is very rare. Its going on 4 years for me. 
At least its easier for me to battle IT knowing what IT is! The Devil doesn't seem so evil when you at least know its name!
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Taking it one day at a time.....
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Aw thanks Mary! Your first paragraph is spot on! Hard lessons to learn but well worth learning!
Glad to hear that you are adapting to being a new mommy, you sure did work hard enough to have your little Angel!! You should post some updated pictures of her!!
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Taking it one day at a time.....
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HI Michele.
I didn't realize you had sarcoidosis. I am fairly new on here and I guess you found out before I started posting.
I am so sorry to hear that. My Mom was diagnosed with it 7 years ago after she had a PET scan that showed her whole body was covered in cysts. I think the majority of them are in her lungs. They thought at first that they were malignant and she had cancer, so I guess sarcoidosis was a pretty good diagnosis compared to cancer! She was diagnosed about 4 months before I was diagnosed with IBS. She also has fibromyalgia. She is amazing. Hardly ever complains. She's my hero.
She gets massages every week and says that really helps her a lot. She also goes to her pulmonologist every 3 months for a chest x-ray and bloodwork. I'm pretty sure she is in remission. At least, if she's not she doesn't say a lot about the pain. Sometimes she says she hurts. Mostly her knees and hands, but I think her whole body aches and she just plays tough.
Anyway, you are in my thoughts and prayers!!
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FancyMom
IBS-A,Constipation predominant, GERD
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Yes, it must be a little easier to at least FINALLY know what is wrong! I've watched at least part of your struggle with that. I hope you continue to feel better, Michele, I think of you often!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Hye Michele -
What kind of infusions do you get? Is it chelation therapy?
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FancyMom
IBS-A,Constipation predominant, GERD
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I'm glad the infusions are still helping, Michele, and that you and Will are doing well. That's good to hear after all you've been through.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Lisa Marie
#332485 - 07/15/08 11:11 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry girls, I haven't checked in for a few days, work has been busy!! It does make it much easier at least mentally knowing exactly what is wrong with me! Its much easier to wage a battle when you know who your enemy is!
Fancymom, sorry to hear about your moms dx of sarc. It took the docs almost 4 years to figure out what was wrong with me. When they finally did cat scans, they thought that I too, had cancer, lymphoma. The oncologist actually came in my hospital room with the hospital Chaplin!!!!  Than they said, well, lets do a biopsy just to make sure. Why they didn't do the biopsy first is a mystery.
I first presented with multiply miscarriages, most unlikely due to the sarc and probably due to blood clots even though my clotting tests are normal. I was recently treated for two pulmonary embolisms and 3 deep vein thrombosis, all types of blood clots and usually the pe's are lethal. While going through the fertility work-up and treatments, I started to have swelling and pain in my hands and feet, they said it was hormones. Than the constant fatigue, they said stress. Than I got pregnant for a 4th time with twins and while pregnant I got a raging case of uveitis (eye inflammation.) they called that a fluke. Lost the twins and blew up everywhere like a blow fish, than I was just depressed. Many, many, many doctors later and many wrong dx later, I finally know what I have, chronic progressive sarcoidosis.
For me, its painful almost everyday, my breathing is very limited, I have constant extreme fatigue, memory problems, the list is very long. At this very minute, I sit at my desk hooked up to a heart monitor. They are trying to figure out how much damage it has already done to my heart. I get remicade treatments for it every 4 weeks and things are improving a bit. I am glad your mom is in remission and hope she stays there!!
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Taking it one day at a time.....
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See my post above, the infusions are remicade. Its not fda approved for the use of treating sarcoidosis but the leading university hospitals are using it and all the studies show remarkable improvement. I have been getting them every 4 weeks since February and I have seen improvement but not as much as others have. I am hoping the longer I am on the remicade, the better I will continue to get.
If you or your mom are interested, this is the message board I belong to for my sarc, its been very helpful!
http://www.inspire.com/groups/stop-sarcoidosis/new/active/
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Taking it one day at a time.....
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Re:Thanks Sand
#332488 - 07/15/08 11:17 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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It certainly makes things much easier now that Will and I are at least on the same page. Things are not perfect but we are both trying very hard and I believe that things will work out for us.
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Taking it one day at a time.....
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Wow. Lisa Marie, you are a brave girl! I am so sorry you have been dealt such a cruddy hand...but what an inspiration you must be to your family and friends. I am sure you have a good support system. How's hubby? Understanding? I hope so.
Are your Remicade treatments helping?
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FancyMom
IBS-A,Constipation predominant, GERD
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Thanks for the info, Michele!! I will definitely pass it on to my Mom.
Keep your chin up, girl. I'm praying for a full recovery for you!!
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FancyMom
IBS-A,Constipation predominant, GERD
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Glad to hear those hands are loosening up a bit! Mine are still swollen and sore but not as painful as they were. I think the remicade is helping!
I'm sporting a heart monitor today, 48 hours worth! These sticky pads are driving me buggy, I can't even stand tags in my cloths let along 5 big sticky pads with electrodes all hooked up to a 10 pound do-hickey I get to carry around!
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Taking it one day at a time.....
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Re: Lisa Marie
#332508 - 07/15/08 02:09 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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oops, Fancymom, I think you mean me, michele not Lisa Marie. I know her to be brave as well but luckily, she does not have sarcoidosis!
It has been a struggle for my and hubby. We almost got a divorce this past winter but we are on the road to better communication and our relationship is healing!
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Taking it one day at a time.....
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Michele, you are such an inspiration. On my MySpace page when they ask who are your heros... one of my responses is people like you... people who have gone through or are going through adversities of any type - and still are "running the race". It makes me feel ashamed of my own pity parties. BUT... I know you will be victorious and I pray one day - totally well - a Miracle fo Michele!
Hugs - Dorothy (shall I use my magic wand or just click my heels together?)
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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Re: GAGA
#332564 - 07/16/08 11:02 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks but that's really too kind. Believe me, I have had some MAJOR meltdowns along the way! I am feeling much better mentally now though and learning new ways to live with my chronic illness and the limitations caused by it!
Just remember, there is ALWAYS someone worse off then you or me but that never discounts our own pain! Pity parties are fine, healthy sometimes even, just don't wallow too long! Have a party, eat your chocolate, cry your eyes out, go to bed and start the next day fresh with a smile on your face!
I actually prefer the magic wound and a little fairy dust never hurt nothing!!
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Taking it one day at a time.....
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