About Me
My name is Michelle and I decided to start a blog about my illness and my life. I became sick about 2 years ago and at that time I didn’t know what was happening to me. 2 doctors, 3 neurologists, and 1 rheumatologist later I now know that I have a couple of autoimmune diseases; still working on a definite diagnosis… So far I have Mixed Connective Tissue Disease, Dermatomyositis, and most recently what they think is the early stages of Rheumatoid Arthritis.
Before I became sick I’d like to think that my life was pretty normal~married, kids, grandkids, working, living the American Dream… Everything has been turned upside down and each day I’m trying to figure out how to right myself.
In writing this out I hope to accomplish a couple of things. One is the therapeutic aspect of getting it all out so it’s not jumbling around in my mind driving me more crazy than i already am. And two, if anyone out there is battling an autoimmune disease they can know that they’re not alone. All of your fears and frustrations i share with you. I feel it all too. It’s a very scary thing to know that your body is attacking itself and there is no cure. All we can do is take the medicine that they tell us to take, try and stay as healthy as we can, stay away from stress (ha) and pray.
Some days I hope to get some good information out there to you, and some days are more likely than not going to be whinefest days. Either way, welcome and feel free to comment or drop me a line.
Michelle
My Ad Disclaimer:
I recently added advertisements to help pay the cost of keeping this website going. These ads are contextual, so the ad company places ads that are relevant to the content of each page that they are on. I don’t get to pick and choose the ads that are placed. With that being said, have fun and read on!
Hi, I saw your comment on Ashely’s blog (RA and me) and wanted to invite you to join a group that I have started for moms living with RA at twitter.com.
If you are interested, we are located at http://www.twittermoms.com/group/momswithrheumatoidarthritis. Please come and join us. We are here to support each other and share experiences and resources.
Please note that you will need to join twitter.com to be a part of the RA group. Twitter was started by Megan Calhoun for moms to connect on various issues. If you are interested, please join us.
Lana
http://ohboy-boys.blogspot.com/
I read that you have mixed connective tissue disease. That is one of the autoimunes that I was told I have. The diagnosis was done over the phone after a recent blood work. I was wondering could you point me to some good information on MCTD.
God bless
Heather L
Hey Heather,
I see that you found the LupusMCTD forum! I have been really sick these last 2 months and have really neglected my SN sites so I have yet to post there. I believe I sent you a bunch of links in the email? Brain fog supreme here! Drop me a line and let me know how you’re doin.
hugs
Michelle
Hi -
I’m writing to ask you to check out my blog http://www.lifewithoutlupus.org/blog.
The blog details my training efforts as I prepare for an attempt to break the current 24-hour track record at the Valley Preferred Cycling Center near Allentown, Pennsylvania. The current record of 391.29 miles (629.72 kilometers) is held by Kurt Bond, of Orefield, PA.
I’ve been blogging my training since last summer, when I decided to try and break the record. I should tell you that up until that point I was just a normal dad with a few extra pounds who liked to ride his bike on the weekends. But my oldest daughter convinced me I needed to take on a big, new challenge.
She’s in college now, but has been living with lupus since she was in grade school. It’s a terrible disease that had caused her immune system to go out of control, wreaking havoc on her entire body, causing long hospital stays, and a lot of scary sleepless nights for her mother and me.
But now that we’re out of the woods and Allie is off at school, I’ve decided it’s time to do something on behalf of the 1.5 million Americans who are bravely battling lupus each day. I know that no matter how much sweat, pain and suffering this attempt may cause me, it’s nothing compared to lupus. But perhaps in my quest, I can raise some money and awareness for an organization leading the fight for a cure: The S.L.E. Lupus Foundation.
With my website http://www.LifeWithoutLupus.org and my blog, I want to educate people about lupus and encourage them to pledge their support to the cause. Lupus needs awareness and attention – and I can only hope that my squeaky bike wheels get the grease. I believe that we’re just $1 away from a cure – even the smallest amount of money and support could put us over the top, and on the way to a life without lupus. That’s our hope; that is our goal.
This is so ironic!!! I was looking for a particular website that has nothing to do with autoimmune diseases but for some reason your website popped up. I don’t know why but I believe fate brought up your website for me to see. I was diagnosed with Antiphosopholipid Syndrome which is basically a form of Lupus. I also have Fibromyalgia which is also a very painful debilitating disease. My sister was also recently diagnosed with Fibromyalgia. My sister and I both have always been “go getters” and very active. Since the Fibromyalgia and the Antiphosopholipid Syndrome (for me) kicked in it’s EXTREMELY frustrating not to be able to do all the things we used to do because of the chronic pain. I think that’s probably the worst part of it, is to not be able to do what I physically used to do. Anyhoo I’m at work right now so I have to get back to work. I just wanted to drop you a line and tell you that I literally feel your pain and I hope everything works out for you.
Hey Laura,
Thank you for the well wishes. Right back atchya hun. I have met a couple of people with AS (too long to spell, lol) and it is no picnic as you know. And Fibro, ugh, I could go on all day about that. It just makes me sick how so many people discount it and it is life altering and so painful.
I still mourn the ‘old me’, probably all over this blog too. But, I’m getting closer each day to counting my blessings and being happy with what I do have now. You really do look at life a different way after losing your health, or having a severe quality of life change.
I’m glad you stopped by! Come back again and say hey
soft hugs
Michelle
Hi MIchelle~
I am new to this blogging thing. I have started my own blog and would like to feature links and stories on my website of others out there ‘in the same boat’ as you and I.
So with your permission, could I had a link to your site from mine?
I have just started so the content of http://www.harmonywithraflares.com is limited. But I know with time it will be loaded with relevant information and links.
I hope you are having a good day, as with autoimmune diseases we have to take it minute by minute.
Angie
Glad to have found your blog, I look forward to reading more and hearing your RA story.
Hi Michelle,
Because of your focus/commitment to raising awareness about RA, I thought you might interested in learning about a new program that we will be launching focused on RA.
I did not have your email address, but I am including mine so I hope to hear from you and I can share more details. Feel free to shoot me an email at your convenience as we would value your input.
I look forward to hearing from you.
Regards,
Brian
Brian Kenney
Centocor Ortho Biotech Inc.
Corporate Communications
So glad to find your blog. I am a 47 year old wife and mother who has lived with chronic pain since being run over (by my girlfriend) at 16 and suffering a broken back and jaw. I have a four bone fusion in my lower back and of course the arthritis that comes with it is very painful. I am only able to walk or stand for about 5 minutes at a time. My right leg goes numb and gets shooting pains if I don’t sit down. I live a very paced life, I call it my bubble. As long as I stay in my bubble I do pretty well, but if I step outside, not so much. From what the doctors tell me I should be depressed, angry and/or bitter. I’m not. I truly believe you must look at what you have and can do rather than what you can’t. That doesn’t mean I don’t sometimes yearn for a time gone by. Water skiing, snow skiing, long walks, running, these are now impossibe. But I am so blessed to have two great kids and a wonderful husband. In my heart I know that God will never give me more than I can handle and I’m a much more empathetic person because of my pain. And that’s what it is, MY pain, a part of me and I’ve had to learn to embrace it and accept it as I have my new wrinkles, sagging body parts, and extra padding around the belly. And don’t even start me on my vision. If I don’t have my cheaters (glasses) I can’t read a thing! Thank you for a place to meet like minded people who are living in pain but must go on. We all are just doing our best to get through each day with as much joy as possibe.
Wonderful to see this blog….Its great not to feel like you are the only one at there.
What medicines (if I can ask) are you taking?
Katia
MIchelle,
I have UCTD, which is very similiar, in fact you might as well say the same thing, among other things. However, I am 37 and was diagnosed a little over a year ago. The doctors say I most likely have had this for close to 15 years. Nice, huh? OH well.. The reason I sent a comment is that I saw you had MCTD and although I know how awful it is, it was nice on the other hand to find someone else out there with it.
I have scanned your blog off and on but today I read the “about me”. I noticed that you have MCTD. That is really rare to come across someone else that has that. It seems that most people have LUPUS, not that that isn’t bad enough.
I hope you are having some better days. I would love to hear from you, but it sounds like you are very busy with many followers and that is great.
I with you the best of luck in your journey of health.
Hugs,
Tammy
Hi Annie,
I’m really glad you stopped by. My reply to this is more than just fashionably late, it missed the whole party, lol. I have been shut down for the last few months-but I’m coming back!
I really admire your attitude. I try to stay positive, as I do realize that each flare is going to eventually come to an end and the next one may not be so vicious. I do pray a lot and like you I know that God is with me and has a plan. I have become closer to God than ever, I wish it didn’t take an illness to bring me there though. I’ve missed so much!
Thank you for coming by and I do hope that you stop in again.
Be well,
Michelle
Hi Tammy,
Please forgive the late response, I have been sick and pretty low lately and both of those things keep me away from my computer. I’m never too busy to meet a new connective tissue issued sickie!! lol Aren’t we just the lucky ones though… I’ve been diagnosed (at different times, and some diagnoses have been ‘pulled’, we all know how hard it is to pin down the correct autoimmune disease) with UCTD, MCTD, fibro, lupus, RA, adult onset Still’s disease, dermatomyositis, psoriatic arthritis, here’s a doozy-Undifferentiated Autoimmune Vascular Disease and when I asked, it meant the same as UCTD. whew! Last month I was positively dermatomyositis, now I see on my sheet when I go in MCTD again. Who knows? I think that when we have autoimmunity it tends not to mean so much when we are suffering. On that happy note, lol, I look forward to hearing from you again. Thanks for the luck and I’m wishing the same for you chick.
Take care and be well,
Michelle
Just having a look through your site and wanted to let you know how much I admire your strength, wisdom and vision. God bless you ~ I am praying for your healing.
Love A
Thank you so much Anita
That means a lot to me, I’m almost speechless..notice I say almost, lol. Thank you so much for the kind words and prayers, I do believe in the power of prayer and I think it is the best thing you can do for anyone.
I do hope that you will come back and visit. I’m praying for you too kiddo!!
Take care and be well,
love
Michelle
Hi – I stumbled across your blog – I normally only skulk around and comment only when really moved – here goes: I, too, have MCTD and while the main issue is mostly lupus-like symptoms, I find myself waiting for the other shoe to fall. I try to remain positive and even though I live in the state of denial, I know I have to be my own health advocate. This is most times difficult as there does not seem to be many answers; there are so many options (ha) with this and I know it affects many in varying ways. I am trying to explore other treatment options – mixing Western and Eastern healing. I am hoping you are on the ‘up’ and look forward to reading your archives and have marked you in my favs!
XOXO
Hi Renee,
I’ve had a lot of people tell me that acupuncture is the way to go for pain relief, though I haven’t tried it. So far I’m on track with just Western medicine and lots of praying!! Come back and let me know what you try and how it went, ok? Looking forward to hearing from you and I hope that you are on an up too!!
I’m glad you left a comment
hugs,
Michelle
Please check out low dose naltrexone (LDN) as a legitimate treatment option.
There is a book —- ‘Those Who Suffer Much, Know Much’ 2009 edition —- and it is full of patient case studies of those who have succeeded using LDN to treat immune system disorders. There are also explanatory articles, interviews with health professionals familiar with the treatment, a list of patient advocates, and a comprehensive list of references.
The book is the result of 8 years research.
In keeping with the altruistic intent of case study contributors, the book is FREE to get and free to share forward with others in need. It can be found on the LDN Research Trust organisation website in the UK (ldnresearchtrust.org).
All my best for your future!
Hi Cris,
Thanks for stopping by and leaving the address for the book. I’ll check it out
Take care and be well!
Hi Michelle,
I came across your blog while looking up some information on Rob Thomas and his wife, Marisol, who is struggling with an autoimmune disease. I was diagnosed with Lupus Nephritis about 2 years ago when I was about 30. It was a total shock and I found that all of a sudden I was seeing 3 specialists on a regular basis, taking 5 different medications and a ton of other supplements on a daily basis, getting blood and urine tests on a regular basis also, and my life as you know it changed dramatically.
The medications made me really sick and just miserable. The side effects were awful and I got really depressed at numerous times. I’m so thankful for my supportive husband and family and friends. The song by Rob Thomas, “Her Diamonds” really reflects how my husband feels and what he has gone through because he knows about the struggle I have had with this disease and I know he feels just as helpless as well.
The saddest part about all of this is that I will probably not be able to have any more children. Which deeply saddens me, but God has blessed with a son and I am so grateful for that.
I have been off all my medications except for one, for the past year now and I hope this will continue! I agree with you in that there really needs to be more time, effort, and funding into autoimmune disease research!
I pray and hope that you will continue to be strong and healthy! Have a great holiday season!
Take care,
Lalita
Hey Lalita,
I’m glad you found me! This comment is DAYS late, I tried responding right after I approved the comment and my computer went haywire.. anyway, I ramble.
Thanks for stopping by and sharing
Sadly, it is so common for people to suffer ill effects from the meds that are available. I’m so glad you have such a good support system-me too and thank the Lord! God bless you and your family this holiday season, Merry Christmas hun
hugs
Michelle
Hi!! I came here!
Nice to see your site, too. Thanks for visiting mine.
“And two, if anyone out there is battling an autoimmune disease they can know that they’re not alone. All of your fears and frustrations i share with you. I feel it all too. It’s a very scary thing to know that your body is attacking itself and there is no cure.” I don’t know what in the heck exactly is going on, I just know that everything I read about Celiac and RA seems to fit a lot of the crap going on with me. I will hopefully have some health care coverage soon so I can investigate this further, I just know for right now that it seems better when I don’t eat things like gluten, diary and nightshades. And, oh yeah, pork, corn, and foods too high in oxalates (lol). Besides feeling like a freak, being “That Girl” when it comes to food paranoia, I live in the bread and cheese and, in general, culinary capital of the world, Paris, and so it’s kind of sucking right now. To know that there are others who struggle with illness and trying to look on the bright side of life when parts of it are freakin’ dark sometimes is a very helpful and uplifting thing. I’m glad you are here. I look forward to reading more.
Karin (an alien parisienne)
Hey Karin!
I’m glad you stopped by and your welcome
Ugh!! It’s gotta suck to be literally surrounded by all of that yummy food and not be able to devour. I haven’t gone gluten-free yet and I’m not quite sure why. I don’t know if I could hack it. So many people have told me how much it helps, I really should.
I’m going to keep my fingers crossed that when investigated, it will be solved. Gawd how I wish there was a cure for this crap. I’m meeting so many people with autoimmune diseases and the suffering that comes with them is never ceases to amaze me.
On that downer note (lol) I’m off. Good to meet you and I look forward to reading more about you.
Take care and be well,
Michelle
hi Michelle,
how are you?
I was 20 when I was diagnosed with dermatomyositis. didn’t know what was going on. I got better, even started running, but got ill again in 2003. now I’m almost 43 and even with this disease I manage to have a “happy” life. I work 4 days a week at court, and since a year or two I’m able to run (slow pace) again. I just try to make the most of every day. it’s not always that easy, as you probably know, but it’s managable.
do you have problems with sunlight? do you take special precautions if you go outside?
wishing you all the best. take good care.
hilde from brugge, belgium (europe)
Hi Hilde,
And it is SO encouraging to hear of you running again! Wonderful 
I am doing alright, how bout you? Thanks for taking the time to stop by and leave me a comment. I love to meet new people, chronically ill or not! lol I’m sorry that you got sick again but so glad to hear that you are happy
I have never liked the sun, even as a child. I always called myself a shade person. When I stay out in the sun I get really sick. Sometimes a light pink rash and sometimes not, but always feel awful. Headache, weak, sick. I wear sunscreen if I’m going to have to be out where there is no shade, and I won’t stay in the sun for long.
stop by anytime Hilde, and say hi,
soft hugs
Michelle
hi Michelle,
great to hear from you! and congratulations with your new rheumatologist! it’s important to have a good doctor on which you can rely and who takes time to listen.
so you also take plaquenil? so do I. quite effective, but it can give eye-problems. and hair loss.. I have an eye-control every six months, my doctor doesn’t want to take any risks.
the sun makes me sick, with headache, weakness, … I wear sunscreen ànd a hat. in the beginning I didn’t want to wear it because of the stupid comments (in Belgium people don’t wear hats. they want to get as tanned as possible and think they’re free of getting skin cancer..) but now I have a small collection..
I wish you all the best, Michelle. take care and I’ll write you soon again.
hilde
Hey Hilde,
People in Belgium don’t wear hats? Baseball hats? Stocking caps? They’re really big here. I think I look really bad in a baseball cap but I’ll wear one once in a while. My granddaughter has a collection of hats, oh she will wear Any hat, lol. She’s in love with’em.
I’m glad you stopped in again
You take care and stop by any time. Wishing you the best too
Michelle
Hi Michele,
I’m glad I found your site. I’m told I have Fibromyalgia, (not sure about that) just a positve DS DNA. Chronic Fatigue ( large mix of viruses, mono etc) and presumed Lyme. I’ve been pretty sick for 3 years now. All I know is that my back is constantly stiff and I find it hard to function. I also take a ton of medicine. I haven’t had much energy for anything else but sitting in front of the computer. I will be perusing your site for any and all information and links to other blogs. Thanks for being here.
Hey Trish,
I’m afraid I haven’t posted anything in a while, I’m sick sick sick. bleh.
Please stop by anytime, drop me a note and I will get back to you, hopefully in a more timely fashion ;-p
I’m glad you found me too
You know, I haven’t thought of this in years, and reading your message just triggered a memory. Years ago I went through a battery of tests to try and figure out what the heck was wrong with me. At the time I was having severe muscle contractions where my arms would twist and contort and freeze like that. Wow, it is so weird how the mind can just put memories away. This was WAY before I got sick. (last 4 years) and I tested + for Epstein Barr. The test said I had had it at some point, it’s all a blur now. I wonder how many autoimmune patients have had or have that type of syndrome.
I’m saying a prayer for you to catch a break and feel like the old you. My direct line to His ear has been busy non-stop these past few weeks, but I know He’s listening.
xo
Michelle