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sickie mamas tribe (parenting with a chronic illness) - Page 5

post #81 of 179
Hi, Im Amanda.. Mama to a 3 yo lil guy, a 2 yo lil girl, and a 5 mo old lil boy who was born at 32 weeks after 8 weeks of hospital bedrest with lots of nasty anti-labor drugs :yuck: Unfortunately he also has lots of medical problems of his own including developmental delays.

I was diagnosed with fibromyalgia about 2 years ago, and also suffer from depression, severe anxiety, and chronic migraines.

I love my kids dearly but its struggle raising 3 kids 3 and under with chronic illness and a not so understanding husband.
post #82 of 179
I can't remember if I posted to this thread or not, but for years they have given me nasty prescription drugs to try to fight my migraines and help me sleep. I have a weird sleep disorder I believe is related to the fibro, where I don't reach the REM state, and when my sleep is disrupted I get more migraines.

Every drug they have given me to make me sleep has given me icky side effects, usually more brain fog or lethargy, which most fibro sufferers know you don't need as those are already symptoms we have. I recently switched from prescription drugs to taking 5 HTP am and pm, and L tryptophan and melatonin at night, and the results have been pretty amazing. My migraines have really dropped off a lot, except for this week which has been unusually stressful with some drama from the kids and some sulfur blowing our way from the volcano which is a new trigger I discovered after we moved to Hawaii, yay. Luckily the winds usually blow it the other way, but on rare occasions the wind patterns change and it comes toward us, and these 2 things happened to coincide this week.

There are some people in my thyroid group who swear their fibro symptoms completely went away once their thyroid and adrenal issues were properly treated, but either I have not found the magic combination for mine or that isn't quite true, I haven't decided which. It seems like every little thing I try helps a little, and I make some progress, but stress will knock me flat on my back every time.

Dh is going to be gone for 2 weeks in May to help my ILs finish their move here, which is going to help us a lot once they are here, but I honestly do not know how I'm going to manage without him here during those 2 weeks.
They do so much for us we really can't tell them no and I'm hoping we don't have any serious drama while he's gone. I'm just dreading it.
post #83 of 179
I have chronic pancreatitis, Hep C, both of my hips operated on from necrosis in each of my thigh bones. I have necrosis in both of my shoulders. Chronic pain. Buldging disks in my neck and lower lumbar. I take care of my 15 year old son and he helps me take care of my 2 and 3 year old girls
post #84 of 179
post #85 of 179
Hiya I'm Rae, mama to 3 girls ages 13, 9 and 18 months. I was diagnosed with APS (antiphospholipid antibody syndrome) during my pregnancy. There is no cure, it is very rare and hasn't been researched much. My daily "symptoms" mimic MS...I recently was told that there are several people who have been diagnosed with MS that actually have APS. I recently had bloodwork done to see if I have lupus, as my hemotologist believes I do.

My husband has been awesome. He knows if I am having a day with just no energy and he will do it all without me even asking. Some days are really hard with the baby but we all make it through don't we
post #86 of 179
Thanks for your thread. I can resonate with the dificulty you have with a chronic illness- I've had chronic fatigue syndrome for more than two yrs now and have had to turn my life around to accomodate, losing my career and starting my own home businesses.

So yea, I hope you can feel better, I'm wishing you and others who've posted in this thread all the best..

post #87 of 179
I'm a mom of one and still have hope of another. I have type 1 diabetes which most days you'd hardly know minus the figer sticks and needle jabs other days though its a huge pain I hate having to deny my child promoised outtings cause my sugars are too high or too low. I've passed out in front of her several times shes seen some bad hypo reactions. I of course also fear her developing it one day.

post #88 of 179

thank you!

hello all! just dropping in to say a HUGE heartful thank you to SeekingSerenity & coop_mom for your sweet, welcoming reply to my post. I can't find the words to tell you how much it means to me to hear your words of support, and simply for listening to me ramble on and on. I think i REALLY needed to download that night i posted (can you tell? LOL). I am SO grateful to have found a safe place to do so. Its a great feeling to know that i am not alone in this misery, and at the same time, i am so deeply sorry that so many other mamas out there are struggling and hurting. I've read each and every one of your stories, and i just ache, knowing the challenges you all face on a daily basis. Maybe together we will find strength to get through what we need to get through, and perhaps even find a way to reach beyond to a much brighter, more joyful existence.:::::

you seem like a remarkable group of women...thank you for being here )
post #89 of 179
Hi. I use to post on the old thread (parenting with chonic illness) but one day the old post just up and died and I just found you again. So i'll reintroduce myself/update:
I'm a SAHM to DS1 (2yrs) and DS2 (almost 3 months!!). After years of of pain, living in the bathroom, being sick EVERY time after I ate ANYTHING, several misdiagnoses (chronic pancreatitis, IBS, maybe its all in your head- you know how it goes) I was finally diagnosed with Crohns Disease. I guess that was almost 2 yrs ago although I've been symptomatic for 7....
Anyways I'm doing a lot better than i was in the beginning but having a little trouble since having DS2. I was following SCD til I ran into the horrid morning sickness but this past week I've gone back on it as I feel so much better when I am (well except for that ice cream I ate but I mean its ICE CREAM! and i paid for it afterwards too so i guess i shouldn't eat it after all). I'm also having horrible back pain. I think part of it is from the epidural I had to get (had to have a c-section) plus picking up a 30 pounder and carrying a 15 pounder the majority of the day doesn't help. I always think doing some yoga might help but with so much stuff to do I just end up collapsing on the bed instead.
anyways glad to know you all are here. i had been thinking about the old thread and thinking it was too bad it died just the other day....
post #90 of 179
my pain has been much worse lately. even with my upped pain meds.
wo weeks ago i had really bad abdominal pain, dr sent me for a CT to rule out appendicitis and diverticulitis. it turned out to be panniculitis, which my dr described as a heart attack of the fat.
the good fat that surrounds our organs helps to protect them, well some of mine died. and it was very painful.
while they found that on the ct, they also found a pancreatic cyst. so i had an MRI last week, and they saw the cyst again. i am working on getting a referal to a surgeon to talk about it, to see if it needs to be biopsied or removed, or just watched. but that is also causing me lots of pain.
i am having a hard timefunctioning while i am in so much pain. its hard for me to get out of bed and take care of my kids. its hard for me to be up and about, cleaning, and making meals, and playing with the kids. i feel like the worlds worst mom because they have watched about a dozen episodes of astro boy in the last few days, just because i have to sit or lay down and rest.
doing research on panniculitis i have notices a slight association with lupus and panniculitis, and also saw a lupus rash, it looks EXACTLY like what everyone has called eczema since i have had it. which is oddly enough the same time i started having severe pain. and reading about lupus (which both my mother and grandmother have!!!) i saw that its often misdiagnosed as fibromyalgia, which i have been diagnosed with. with all of the pancreas stuff i havent had time to talk to my dr about it yet, but i am starting to think i have misdiagnosed, and that i have lupus like my mom and grandma.
post #91 of 179

I started a new thread not knowing this one existed

I have MS, but am still very functional with only some memory/mental acuity problems and need more sleep then usual. I also need a little help with meals and housework, but we live in community and I do get some help (mostly meals) I currently have custody of my dgd and my dd. DD has always homeschooled, but is needing to consider ps right now as I am just not organized and on top of things enough. I know I'm not being as good at providing nourishing activities for my dgd as I was with my dd, and I would like to give her back to her loving mother (my grown step daughter), but she is struggling with her own issues right now. I am also needing to re-consider some decisions about how I wish to treat the ms. I'm glad to have found you all.
post #92 of 179
post #93 of 179
Hey Tiffany--I hope you feel better! I'm sorry you're in so much pain. It sounds like you need to look into lupus as a possible diagnosis.

Hey mommas, I'm having a rough week. I had a severe allergic reaction to Cipro and feel I'm lucky to be alive. Benadryl really saved the day because even though my husband had to run out and buy it, it was still faster than EMS response.

I've had a uti for a month. The flu. A sinus infection. And a hemmorraghic (sp?) period when I'm supposedly annovulatory and don't have periods.

I also have new insurance in a system that's never seen me before so I'm trying to get established with the various specialists. Yesterday I spent 4 hours seeing doctors and having medical tests. Sadly, they are trying to tell me I don't have asthma despite a 20 year medical history. God forbid I have one 'normal' pulmonary function test!

I spent a lot of time going round in circles with a specialist where I would say frex 'The sky is blue' and they would say 'Saturn has two moons', complete and total disconnect. I finally started refusing tests, just trying to get the hell out of there.

Have you ever had that? The specialist from hell who wants to go down the rabbit hole chasing bizarre diagnoses and doing all sorts of unnecessary tests?

It's just a mess right now. I'm not on any antibiotics at the moment and don't know what the plan is and illness is the biggest trigger for my asthma. Illness + asthma send me to the ER and put me in the hospital so I'm stressed about the lack of antibiotics.

And I'm trying to be present for DD but this medical stupidity is very distracting and exhausting kwim? Plus, I've been acutely ill for a month now.

Anyway... I'm trying to find some equilibrium here.

Plus I had a question. How do you mommas handle pills and medications? I try to take them where DD can't see because I don't want her to ever try and mimic me. But inevitably she sees them b/c I have to take them on the run in between parenting.

post #94 of 179
Hi, ladies, I'm looking for guidance.

I have thyroid cancer and will be on lifelong medication to control my hormones. My daughter (newly three) knows that I take this one pill a day that we refer to as "Mommy's medication." She's never shown any interest in touching/tasting/etc them.

Earlier this week she spiked a fever and after the non-medication attempts (cool bath, pushing fluids, etc) I gave her her first dose of ANYthing. I referred to is as "medication to help with your fever." She took it, fever went down, all is well.

Fast forward to yesterday and today - she is literally whining for "medicine"...all.the.time. To humor her I took her temp again and it was normal and matter of factly explained that she didn't need medicine.

I'm not sure where I'm going with this, but I'd love some ideas from you. I'm going to assume that many of you take some form of medication and might have some ideas for me. With the exception of my daily pills we are just not a family that takes stuff - which is why this fever reducing stuff is sooo exciting.
post #95 of 179
africanqueen99- was the stuff you gave her in any way tasty? it could be that or maybe she likes doing something just like mommie? i think you dealt with the right way. if shes still asking maybe you could also do something else with her that she sees you do , or maybe eat something healthy & yummy as prevention -but don't call it medicine.
post #96 of 179
Hmm. It was infant ibuprofen, so it might have some variation of cherry flavoring, but I'm not sure (I'm too lazy to go look right now). That's a great point, though.

If she asks again I'm going to have her go hang my laundry - that should nip it in the bud!
post #97 of 179
Thread Starter 
hi all!

big hugs to you Tiffany (and to everybody else who needs them!) - I have lupus (was diagnosed in Oct. 2007) so let me know if you want to chat about it (though you probably are pretty familiar with it if it runs in your family )

re: watching TV -- this is something that disappoints me, too, but I finally came to terms with it. When I originally set up my parenting goals (ie. no or only a little TV), that was before the lupus came into the picture. TV is such a helpful crutch that it gives me a little (much needed!) break during the day, and some days more than others. But these days, I have to value taking care of my health as a top priority, so if DS has to watch a little more TV than I'd like, I'm OK with it - it's working towards the greater good!

mommabear, glad you found us

violet, I'm glad you were able to put your foot down with your docs...My most recent trip to the specialist (one of the top lupus docs in the field) didn't want to do a bunch of tests, but did want me to go on medication that I didn't want to go on (she wanted me on an immunosupressant, but I'm not ready to go there, particularly since I'm feeling better, not worse! ) - it's hard to disagree with docs sometimes, so good for you!

re: meds and kids...i take "real" medication (plaquenil and prednisone) and then I take some supplements, too. my son used to help me take my supplements (hand them to me and then I'd take the pill) but I never let him touch the real stuff. He also takes pills of his own (fish oil and gummy vitamin) so he's not really jealous of my meds. I don't take as many supplements these days, so I just take my meds myself and he takes his. And I try to be very careful keeping the meds hidden away when I'm not taking them -- the boy is 2-1/2 and will put EVERYTHING in his mouth. I do explain that the meds are only for when he's sick, but -- he's 2-1/2...

anyway, hope everyone is feeling as well as can be expected (or better!) -- does the nicer weather make you feel better? it's a mixed bag for me, I love it that spring is here, but the lupus makes me allergic to the friggin' sun (

take care all
post #98 of 179
hi mamas,
I'm new here too, though i don't spend as much time here on MDC as i'd like... you'll all understand, i'm sure !!! I am 31, and mama of DS, age 4.5 and DD, age 2. I am currently on disability, but i am a pediatric physical therapist and can't wait to get back to work... AKA, NORMAL!! Why am i here... Well, in november, after about 9-10 months of not feeling right, thinking i had IBS and losing more weight than i care to discuss... I saw a GI doc, who, after hearing of my rectal bleeding, loss of appetite, abdominal pain and nausea.. confirmed my self Dx of IBS. see ya when we see ya was the gist of their goodbye. nice. in january, after the holidays had passed and still not feeling better, I called again. insisted on another appt. Still, i was told it's IBS, alternating type, and I have to live with it. take peppermint oil for my discomfort, because i was still nursing DD, and not willing to wean. plus, i had an inkling meds would mask symptoms and i was not comfortable with their dx. based solely on my complaints. we live in an age with sophisticated medical technology, and they didn't want to use any of it. Again, i got the basic "See ya when we see ya" response,... so again in february I called (thank GOD we were persistent!!) because DH recognized that i was getting worse. I mean, i couldn't drive half hour to work some days without having a bowel accident in my work pants.. talk about humiliating. ugh. I called again in Feb and basically insisted they do a colonoscopy. i remember being in the recovery room and the doc comign in to tell me, while still recovering from sedation, Jeez... that he found a bad lookng mass in my rectum. then he left after i asked all abotu surgery and colostomy bags and stuff... that was a friday afternoon. he called on tuesday to tell me i had rectal cancer.
i've since seen a lawyer, don't worry. I've found a good team of docs to help my fight, it's been a rough road so far- 6 weeks of radiation plus chemo, which i tolerated ok until the end. I am currently in the middle of my 6 week healing period, which will lead then to surgery to remove the diseased part of my colon. after that, i have another 6-12 week break, and then begin 6 months of chemo, every 2 weeks, wearing a pump to administer it for 2-3 days at a time. I HOPE to be able to work during this time. we'll see.
anyway, my "this is gonna be short" intro has turned into a novel... but the real kicker... well, aside from being told each visit that it was stress related, was that at the first visit with the GI doc, I pressed for more info, and asked "well, you say this is IBS, what else could it be??" and would you believe the response i got was:" What?? If you're worried that this is cancer, it's not, you're too young." nice.
anyway, sorry we all have to be here together... but we'll get through it. I have a lot of help when the fatigue, pain a, ddiarrhea are too much to bear, my church cooks meals, so i have not cooked in months, but our family has had healthy meals, I've lost 40 lbs, but i'm working on gaining it back LOL! And the biggest thing that has helped me though this is my faith in my LORD Jesus Christ. he's my rock and I know we will survive this.
post #99 of 179

You've been through a lot!!! You're a fighter, and I hope you will start seeing the effects of your persistence soon. Hang in there. Sending many healing thoughts your way!
post #100 of 179
Originally Posted by Sasharna View Post

I've had episodes of fainting and presyncope since I was 14 years old (spontaneous vision loss accompanied by collapse and sometimes chest pain), along with shortness of breath on exertion that has gotten progressively worse... especially since the birth of my firstborn. Sometimes my heart races to 160 BPM and I can't get a decent breath when I'm just standing at the sink washing dishes!

I had vision loss,collapse,chest pain, racing heart (sometimes up to 160 BPM, a memorable time was when I was having a C-section and all the alarms started to go off and my husband had to calm me down before they could get my baby out) Heat /or anxiety caused attacks, mostly it was becoming over heated. It was a heart condition called Wolf Parkinsons White Syndrome. I am now fully recovered after a heart procedure. Just had to reply to you b/c of the symptoms you described. I hope you find out what is wrong with you.
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