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#31 of 46 Old 10-11-2010, 08:48 PM
 
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I'm new to this tribe. I've led an active life -- lots of traveling, hiking, swimming, hobbies, etc. Three years ago, when my kids were 15 months old and 2 years old, I got the flu and had a bad reaction, landing myself in the hospital with "severe myositis, expected to resolve within 6 weeks." As it turns out, that was the final trigger to developing severe fibromyalgia. Three years later, I use two canes to get around, and motorized chairs in grocery stores (the kids love that). I throw up a lot, don't sleep much, take a lot of pills that don't seem to do much, and have had to restrict our activities pretty noticeably.

My kids are 4 and 5 years old now and are pretty experienced at doing things like holding doors for me, helping to carry bags and books, setting the table, folding laundry, etc. We've been very clear with them that while Mama is sick, Mama is NOT dying, and Mama does NOT have "fibro germs" to share with them. DD has processed some of her concerns by saying that her legs hurt, too, and she needs canes to walk. We've done a lot of reassuring that she is very healthy, very strong, and can't catch this from me. DS is a runner, and the canes have come in handy for catching him when he bolts. They give me a good two-foot arm extension! He still climbs on me a lot, and that can be hard, because I want to enjoy it but sometimes it just hurts too much. So that sucks.

We're still adjusting. I've been sick for three years, on and off, but I only got the diagnosis a few months ago after a lot of tests and pushing for answers. Now I'm filing for disability, getting a shiny placard for my car, and redefining who I am when I can't do any of the things I've been trained to do or enjoy the hobbies I've enjoyed for years. My constant is my family. Everything else might change, but I have my husband and children and I'm very thankful for that.
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#32 of 46 Old 10-12-2010, 12:34 AM
 
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Welcome, earthmama369! I used to be very active, too, then I got diagnosed with lupus. It has been a major change in my life, but my family is very important, too. My husband and I divorced this year, but we're friendly and he still comes to see me quite often. If it weren't for our grandchildren and the trauma we've been going through with DCFS, he may have never left.

My grandson has had to get used to a granny who can't do everything she used to do, and he also helps out, even though he is only 4 years old.

I'm considering bringing home my 2nd grandson who went to stay with a foster family when I got really sick in late February and if he can come back home I'll be so happy to have him with me again. My illness was so severe and he was only 7 months at the time. I have a better support system now, and just waiting for the caseworker and her supervisor to decide.

I've got that shiny placard, too. I used to hate the idea and actually didn't get one right away, that stubborn independence took a while to overcome. Eventually I came to realize that parking a little closer to the store wouldn't be such a bad idea, considering that I need a hip replacement!

Keep us updated and we'll be glad to listen and be here for you!

Illinois granny---Oldest GS placed with me 11/08 , baby brother born & came home 8/09 , Moved to foster home 3/10 . TPR not approved 6/10
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#33 of 46 Old 10-12-2010, 05:59 AM
 
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Hi!
I've been reading everyone's posts and think I just might fit in here. I've had rheumatoid arthritis most of my life. I wasn't diagnosed until I was 12 but probably had it since I was an infant. At 12 I was put on all the "normal" mainstream type drugs and I lived my life with good days and bad days, with flare-ups and set backs and with many drug side effects. It wasn't until I met my wonderful husband that I began to seek out natural medicine with his full support. Unfortunately I didn't switch over to all-natural therapies until after DD was born. However, the 19+ years of steriods, anti-cancer drugs, anti-malaria drugs, NSAIDS, and IV arthritis drugs took a major toll on my body and immune system. I am left with asthma, severe environmental and food allergies as well as nasal polys which cause chronic sinusitis, bronchitis and pneumonia. As well as a gamut of other immune related disfunctions. Thankfully, I am able to control most of those problems with supplements and other natural therapies but they still continue to be a struggle.

My DD is the light of my life. She is a very happy girl that is so full of curiosity and imagination. She loves music and dance which makes me so happy to watch since I can do neither.

I do feel like she has to "grow up too fast" in a lot of situations which makes me sad. Such as not being able to hold her or pick her up when she falls. I of course comfort her and invite her to sit with me but I can't physically pick her up. She also helps do chores and fetches things for me so that I don't have to walk accross the house "again".

As a few of you stated I fought the idea of being on disability but after two years finally succumbed. I still don't have a placard though.

I'm happy to read your inspiring stories of perserverance which help me keep going as well.

Married to my soul mate and totally devoted to DD (6/08) and enjoying our 2 cats and many fish. Wishing for a "green" house in the country where we can raise more children!
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#34 of 46 Old 10-12-2010, 01:42 PM
 
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After following this thread for a bit I think it might sit better in Health and Healing. Let me know if you have any questions.

earth.gif trottin', pole dancing, Norway and Sweden lovin' , hippie.gif,WOHM Kiddos born waterbirth.jpg 12/11/06 and 08/09/08 
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#35 of 46 Old 10-12-2010, 02:19 PM
 
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I have crohns disease. I am in remission right now, but last year I had a pretty severe flare. I was so inflammed they had to use a pediatric camera to do my scope and I was pretty close to needing surgery. In fact if the remicade hadnt worked I would probably have a colostomy bag right now.

When in pain, i have way less patience, and I sound mad, but I am not, I am just talking through the pain. DD went through a bit. So did my husband since he had not exprienced what my disease was like yet. I was in remission when we met and stayed in remission for a few years. Because it had been so long since I flared, I went through the seven stages of grief and the denial stage was the longest.

I think DD is very happy to have her mommy back, but at the same time I think she is stronger for having a sick mommy. I think our marriage is stronger too. My DH had to face some demons, wondering what exactly he had just signed up for. I do feel quilty sometimes even though being sick is not my fault.

Me(33), Mama to a crazy DD (6), Wife to a wonderful mountain man(32) BF my babe for 2 years.
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#36 of 46 Old 10-18-2010, 03:42 PM
 
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hi all

I figure I'll jump in here, too. I was diagnosed with lupus in Oct. 2007 (about a year after giving birth to my wonderful son ). The first year, I was able to cling to my denial, but then the next 2 years I was pretty sick - pain, head-to-toe rashes, fatigue, lots of other random symptoms.

As if the lupus wasn't enough to totally crazy up my life, this past summer they determined I had a brain tumor in my front left lobe (you can't make this stuff up!). The doctor's determined that I should have it taken out, and they said it wouldn't really change anything, but it was safer to remove it. But lo and behold, there were actually huge changes upon removal - many of the symptoms we'd been attributing to the lupus went away

So, I'm currently trying to figure out how to live my life again, now that I'm not glued to the couch all day. It's been quite the roller coaster, but I'm thankful to be feeling better, and just hope I stay this way.

The "unknowing" makes planning life awfully tricky. If I get a job, what happens if the lupus flares up again? And will it be too stressful? Very hard decisions, but at least I have choices now (if I could even get a job in this economy, I'm a librarian, not a lot of jobs out there right now).

glad to have found this thread, hope everyone is hanging in there!

--kristin
mom to Simon, age 4
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#37 of 46 Old 10-19-2010, 12:29 AM
 
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Hiya everyone!

I have MS (diagnosed in Nov. 09). Onset was probably 3-4 years before that. I have cognitive problems that have pretty much killed my ability to work at the level I once did (as a successful freelance writer/editor). Plus fatigue, severe heat intolerance (big issue as we live in a subtropical zone), balance problems, bladder problems galore and neuropathic itch. I sometimes need a cane and *always* ride the motorized cart at the store since a store trip will completely wipe out my energy for the rest of the day if I walk. I also have pretty bad swallowing problems and esophageal spasms. I use a relay line for phone calls because my speech is often slurred. Oh, and I have 20/6,000 vision in my left eye following a bad case of optic neuritis, so I have to wear an eyepatch -- seeing with one eye beats the heck out of not being able to see with both eyes open. So I'm a pirate mama!

I have a 6 y/o and am 23 weeks pregnant. Being pregnant is great -- most of my symptoms are in remission. OTOH, I can't take most of the meds I normally take, so fatigue in particular is a big issue.

People think I'm weird when I say this, but the diagnosis didn't really bother me much at all and it never really occurred to me as something that would create problems with having kids. No doubt this is because both of my parents are disabled (dad is elderly and has severe spinal arthritis, mom has CP).

--K
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#38 of 46 Old 10-19-2010, 01:57 AM
 
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Welcome, Kristin and K!

Kristin: Wow, you've been through so much! I am glad you are feeling better now. I have the same feelings about going back to work, and so does DH as we both think it might make me feel worse...

K: You have a great attitude! I wish you a H & H PG!

AFM: I am glad I saw this thread in this folder as I couldn't find it for a few days! I hope all is well with you. I'm glad we have this thread as thinking about motherhood is so different for me as compared to healthy people!
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#39 of 46 Old 10-20-2010, 12:04 PM
 
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Quote:
Originally Posted by Silverbird View Post
Hi all,

dh and I are ttc and I would love to get in touch with any parents who have a disability or chronic illness.

dh has a spinal tumor and it would be great for me to here about how anyone with mobility issues or cancer deals with parenting.

anyway I can't see any other area for disabled parents so hopefully we can meet here.

Silverbird
Hi Silverbird,

Well, my husband is legally blind (pending disability), and I have chronic pain that's so bad I can't get out of bed some days. I'm losing more mobility and range of motion each passing year (and I'm still really young!) Plus, I'm hard of hearing.

I had DS in 2006 when I was 16 and the pain was so bad most days all I could do was sit on the couch or lay in bed. Sadly, he ended up on the couch with me most of the day or in an exersaucer. He ended up being a late sitting, standing, and walking. But we were also in a difficult situation then (abusive household) so it's possible those were related to that and not my lack of physical activities with him.

I had DD in 2009 when I was 21 and the pain is not as often (some days I barely notice it) but when it is bad it's a whole lot worse. Different living situation and now I've just baby-proofed my whole living room and closed it off from other rooms so she can't hurt herself. That way if I am stuck laying down, she still can get down, crawl around and play with toys. She is 11 months and crawling, standing just fine, not walking yet though.

DS is 4 now and he would much rather read a book or play with blocks than go run around (although he does enjoy running at the park once a week or so, but he understands that Mommy can't usually run after him).

DD on the other hand, I worry about how my issues willeffect her since she is a much more active child. Guess we'll just have to see though.

treehugger.gif Mom to jammin.gifDS7 and Peace.gifDD4.  Full time Social Work studentgeek.gif.
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#40 of 46 Old 01-02-2011, 02:38 PM - Thread Starter
 
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wave.gif Hello all,

 

I was hoping we could get this thread going again if people want.

 

I've been off MDC for a while because dh was in hopsital and I was mad busy.  Lucky he's out now.  His tumor grew again ans he's now completly paralized chest down.  He's had some good rehab but is still figuring things out.  Since coming of of hospital he's constantly had the flu so hard to see where he's at.

 

Anyway our big news is that we've finally started on the road to fetility treatment with an appoimnet on tue and then in two weeks time.  Unforutnaly if we're succesful it's a 18 month wait for NHS treatment and I don't know if we'll want to wait that long.

 

Any way I'd love to hear who you all are.

 

Silverbird


Missing my dh everyday candle.gif and hoping there is a brighter future for me out there

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#41 of 46 Old 01-02-2011, 08:17 PM
 
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Hi Everyone!

I don't come in Health and Healing much, but i saw the thread in FYT, and decided i should come join. I'm Bex, in my mid twenties, and have Ehlers-Danlos Syndrome type III.  Basically, i have severe hypermobility in my joints, and a whole lot of pain.  I am not yet a parent, except to my kitties, but enjoy hanging out here anyway.  I don't post all that often, but i have been thinking a lot recently about how my disabilities will affect my ability both to have and raise children. In my mind, I will be a parent, more or less whatever i have to do to get there, i will.  I worry about carrying a pregnancy, as the worst of my joints is my spine, and i use crutches or a wheelchair to get around, but at the same time i really want to experience pregnancy and birth.  I don't know, i may have to make it up as i go. 

 

Anyway, i hope that all makes sense, i'm a little all over the place tonight, i'm somewhat terrified of the next two weeks, i work in a college bookstore, so the first couple weeks of the semester are crazy, and i'm not feeling up to it physically, and while i'll do what i can, it's going to be hard.  I hope the new year is treating the rest of you better!


Bex, 25, wheelchair.gif currently only mom to my 3cat.gif, happily reading and learning until i have kids of my own!

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#42 of 46 Old 01-03-2011, 02:17 PM
 
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Happy new year, everyone!

Silverbird: Thanks for restarting this thread! I'm so sorry to hear about hubby, he is in my thoughts and prayers...I wish you the best of luck with your treatment! Hopefully you won't need to wait too long...

Bex: Welcome! I'm sorry to hear about your condition, it sounds so painful. I hope you'll get to be PG someday and feel good!

Well DH has been working in a low paying job outside his field for the past month, with still no success of finding a good job...It is helping us not deplete our savings as much, but it doesn't cover everything...Meanwhile, I need PT and other treatments, which are expensive without work insurance (we live in Canada but things like dentistry, PT, acupuncture, etc. are not covered). I am happy being a homemaker even though it happened by accident, but I am afraid I'll need to go back to work soon as our 8-month emergency fund is now reduced to a 4-month one... 

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#43 of 46 Old 01-04-2011, 01:14 PM
 
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Hi, just saw this thread and decided to jump right in! My dh is a quadriplegic and we are now expecting baby #3. The mobility issues bring about some challenges, but we just get creative! My older two are 9yrs old and almost 8yrs old and they handle their dad's disability really well! It really helps them to be "blind" almost to disabilities in general. I notice that they hardly even notice when we come across other's with varying disabilities. It also helps that dh doesn't let his disability get in the way of living life. He works hard so I can stay home and homeschool. He also is very active: bike riding, jet/water skiing, rock climbing, sky diving. 

 

Anyhow, just wanted to jump in and say HI!

 

Elisabeth

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#44 of 46 Old 01-05-2011, 10:02 AM
 
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Hi Elisabeth! Welcome! I am sorry to hear about DH, but it sounds like the whole family has well adjusted! Congrats on baby number 3!

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#45 of 46 Old 01-06-2011, 07:09 AM
 
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Well, I landed myself in the ER the week before Christmas because my pain levels go out of control and I couldn't keep anything down for 30+ hours. Damn. As a result, I've got a handful of new meds and we quadrupled my dose of neurontin. And it's been gently suggested by my husband and my doctors that I need to stop homeschooling our kids for a few months. :(

 

So DD starts first grade on Monday. I'm keeping DS home with me for a few weeks to see how we do. If I'm not getting enough rest or if he gets really bored without his sister to play with, we'll look at a preschool program for a few hours a day. I seem to do ok when I'm getting 15 hours of sleep a day. Not really practical in the long run. (Or even in the short run.) Still working on figuring out if I'm just on the severe end of fibro or if there's something else going on as well. Muscle biopsies to rule out a metabolic disorder are scheduled for sometime next month.

 

Has anyone ever heard of Central Sensitization Syndrome (or something like that)? The phrase pinged my radar yesterday through a friend's Facebook post, but I haven't found much info about it, except that it seems to be tied to fibro and chronic fatigue in some way. It's another lead to follow, maybe?

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#46 of 46 Old 01-06-2011, 08:14 AM
 
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That's such an ordeal, I'm sorry to hear! I haven't heard of this Syndrome but I hope you feel better!

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