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sickie mamas tribe (parenting with a chronic illness) - Page 4

post #61 of 179
Thread Starter 
hi all, how's everyone doing?

I'm finally feeling a little better, started tapering my prednisone today, so let's hope I continue feeling better...I started tapering because I'm turing back into "buzzy kristin" - I get a bit spazzy and talk a mile a minute! oy

I'm feeling a bit annoyed because like my lupus pain isn't enough, now my old back pain I used to have has come back and it hurts *a lot* - I almost couldn't walk the other day -- I'm sure it came back because I was feeling better so I have been carrying my son more, jeesh!

hope people are doing well, is everyone happy that spring is (almost) here??
post #62 of 179
Hello! I can relate to so many posts here! I have fibromyalgia and bi polar disorder.

I have been really beating myself up lately with how little I have been able to get done. My fibro went into a flare up after DD was born, wich I pretty much expected to happen. It's been pretty rough but thank God for being able to nurse lying down! DD and I can snuggle up all night long and I just periodically switch sides. She is so happy too. And it's so cute as she has just started reaching out to help guide the breast to her mouth and she holds on.... just precious and that pretty much helps melt away any frustrations from pushing through the day.
post #63 of 179
Hello everyone! Here's my laundry list:

Crohn's disease
IBS and lactose intolerance
Crohn's-related arthritis
fibromyalgia (secondary to Crohn's)
clinical Sjogren's syndrome (but had a negative blood test)
polycystic ovarian syndrome
obsessive compulsive disorder
bipolar disorder

It took years of symptoms, tests, hospitalizations and surgeries to get the right diagnoses and treatments, but now I live a pretty functional life. I'm really grateful for that. If I hadn't had all those years of struggle, I wouldn't be as appreciative of the relative stability I have now. I have always been med-compliant. My motivation is my 9 year old son. I want to be healthy and stable for him.

What I struggle with the most are IBS symptoms, fatigue, and periodic episodes of muscle and joint pain. Crohn's stays in remission as long as I stay on my Remicade schedule. The irony is that some of my suffering is self-inflicted. I eat dairy even though it causes lots of pain and time in the bathroom. I don't know why I keep eating it. The fatigue and pain are triggered by infections--and I get lots of sinus infections now that I'm on Remicade. Remicade is the only medication that has worked to keep Crohn's in remission though. Prior to that, I had bowel obstructions and resection surgeries due to inflammation and scarring. So I take the Remicade and just deal with the sinus infections and resulting fatigue and pain.

I'm looking forward to getting to know you all.
post #64 of 179
Thread Starter 
Quote:
Originally Posted by JSMa View Post
I have been really beating myself up lately with how little I have been able to get done.
I used to do that, too, but don't any more! I really re-evaluated what I "needed" to get done in a day, and decided that if I spent a good day taking care of my son, then that was enough! : Of course, my house is not as organized or clean as I would like, and sometimes we eat the most random hodge podge of food for dinner, but I don't really care

ReadingMama, that's quite a list! And I'm totally with you on the dairy...I think it's an addiction for me...I get stomach issues when I eat it, too, but I still love it love it I was off dairy for 2 years while nursing my son, but when I reintroduced, it's like I want to eat it all.the.time! I try and refrain, but...

And it's great your meds control your stuff...I'm still working on finding a good balance of meds, nutrition, supplements, acupuncture etc (phew, it is really tiring thinking of all this )

take care all, it's a gloomy rainy day here, I'm trying to stay cozy!
post #65 of 179
Quote:
Originally Posted by coop_mom View Post
ReadingMama, that's quite a list! And I'm totally with you on the dairy...I think it's an addiction for me...I get stomach issues when I eat it, too, but I still love it love it I was off dairy for 2 years while nursing my son, but when I reintroduced, it's like I want to eat it all.the.time! I try and refrain, but...

And it's great your meds control your stuff...I'm still working on finding a good balance of meds, nutrition, supplements, acupuncture etc (phew, it is really tiring thinking of all this )

take care all, it's a gloomy rainy day here, I'm trying to stay cozy!
I love dairy, but dairy doesn't love me. Yet- I continue to eat it...

And finding a balance with meds, supplements, acupuncture, etc is dizzying, but worth the work when you can do it. It is so hard to want to use all natural products, eats healthy foods and do what's right for my body, when the thing that makes me feel good is drug that has the potential to destroy my liver or leave me open to a serious infection.

Today started sunny, but ended gloomily (rain started at 5:00)


I'm on week three of decreasing one of my meds and so far so good....
post #66 of 179
Hi everyone, just checking in.

I had a migraine yesterday, wasn't that fun. : Got nothing done and by the evening I felt like a waste of space. Not exactly something I could help, but you know that feeling.

I had the doc write scripts for Topamax, which is supposed to help the headaches, and Cymbalta which is supposed to help with the depression and fibro pain, but I haven't been able to go to the pharmacy to get them filled! Fifty dollars is my part of the co-pay and I have not had that much just lying around. So, still plugging along here with the usual complaints.

However, I must say I am thrilled to report that my vitamin-D treatment, now in week 7 of 8, seems to have had a positive effect on my hand/wrist pain! Though my fingers still occasionally ache and I get twinges in my wrists, I am not in the horrible, constant hand-pain that I've suffered for the most part of the last 4 years. The rheumy was hoping (though it was a long shot) that the Vit-D deficiency was the root cause of ALL the pain and fatigue, but no such luck. I'm still limping around in agony with my knees, back and hips, and curled up in a fatigue-riddled ball more often than not.

But counting blessings here... I can open the peanut butter without wanting to cry now!!! :
post #67 of 179
Quote:
Originally Posted by SeekingSerenity View Post
However, I must say I am thrilled to report that my vitamin-D treatment, now in week 7 of 8, seems to have had a positive effect on my hand/wrist pain! Though my fingers still occasionally ache and I get twinges in my wrists, I am not in the horrible, constant hand-pain that I've suffered for the most part of the last 4 years. The rheumy was hoping (though it was a long shot) that the Vit-D deficiency was the root cause of ALL the pain and fatigue, but no such luck. I'm still limping around in agony with my knees, back and hips, and curled up in a fatigue-riddled ball more often than not.
Wow, me too! I have 2 more monthly prescription vitamin D supplements to take (having finished the weekly ones) and my wrist pain has gone away too. Before my PCP mentioned it, I didn't know that a vit D deficiency can cause body pain. I hadn't ever had wrist pain before, so I thought I had carpal tunnel syndrome, but my nerve tests were normal. I forgot to mention the vit D deficiency in my laundry list! I also have B-12 anemia and take shots once a month for that. That's Crohn's-related like most everything else. Gotta love autoimmunity!

I have another sinus infection, so I'm dealing with fatigue and sore joints and muscles now. And it's cold and rainy. Bleh.
post #68 of 179
I have MS and now they think my leukemia is coming back. So I have really struggled with health issues for the past year or so. I have almost 34 month old identical twin girls and we are starting our first cycle with our surrogate in about 4 weeks!
post #69 of 179
can i join too?
i have fibromyalgia, bipolar disorder, chronic migraines, and ibs.
i live my life in pain, every moment of my life, including sleep, when i can sleep, i am hurting so bad that i often wake in the middle of the night crying in pain, even though i take my pain meds before i get into bed.
my Dr prescribes 60 pills of vicodin each month, and has on the label "take up to three time a day" but i have to limit myself to two, because i only get 60 per 30 days so for many many hours i am in excruciating pain. the only other thing that helps partially is medical cannabis. and i am too poor to afford my card right now.
post #70 of 179
Quote:
Originally Posted by tropicaldutchtulip View Post
I have MS and now they think my leukemia is coming back. So I have really struggled with health issues for the past year or so. I have almost 34 month old identical twin girls and we are starting our first cycle with our surrogate in about 4 weeks!
Wow. I will be praying for you for complete and total healing, and for the energy to take care of your soon-to-be-expanding brood!

Tiffany, I'm sorry you're in so much pain. It sounds like your pain isn't being managed with the medication you're on. Have you been to a pain specialist?
post #71 of 179
no, they want me to wait 6 more months before i go see a pain specialist. : meanwhile i am in pain all the time, and they asked me to sign a narcotics agreement. for vicodin. something that barely touches the pain.
i think that they think i am a pill junky. except i HATE taking pills to alleviate pain, and depression, etc. i would MUCH rather have complete all natural resources to help me. unfortunately nothing i have found helps completely.
post #72 of 179
Tiffany,

I'm on tramadol for pain. It's sometimes prescribed for fibromyalgia. I know people who do really well on Cymbalta. Not only is their depression treated, but they find a noticable difference in their pain. You might ask about trying this in addition to pain meds, and then trying to wean off the pain meds over time.
post #73 of 179
I had a WONDERFUL thing happen! My chiropractor, who I see for the scoliosis pain, asked about my migraines. Although they seem to be mostly hormonal and follow my cycle, she said that a lot of the pain was coming from my jaw, oddly enough. I am apparently carrying stress there. She suggested I buy a gel-style mouth guard to wear at night to keep me from clenching my teeth. I did about three weeks ago and this month at migraine time I had a 1/2 day mild migraine instead of a three-day whopper! WOOO HOOOO!!!! I am not convinced totally yet, but it gives me hope!
post #74 of 179
RM, we want to try cymbalta for me after Niamh weans, but that doesnt look like its happening soon.
post #75 of 179

newbie here

hello, all you fabulously inspiring mamas!

well, unfortunately, i seem to qualify for the tribe! it seems like a great place to be, though.

i'm the mama of two precious girls, ages 10 & 6. i've been experiencing some mysterious form of "chronic pain" (for lack of a better term) since shortly after my second dd was born. Six years in, and i still have no idea what it is, no official diagnosis, and haven't found a single thing that helps relieve the intensity of what my body is going through. Most of the time, it is 24/7, with no relief in sight, and an intensity which truly makes me insane...and then, once in a blue moon, it will spontaneously disappear, and i'll have a few minutes, a few hours, or perhaps ever a few days of respite. I have driven myself insane, and beyond, trying to figure this out (what it is, what is causing it, why it won't respond to anything i've tried, etc.). I have baffled doctors, chiropractors, accupuncturists, massage therapists, chaniosacral therapists, homeopaths, herbologists, natural healers....a very long list of practitioners, and nobody is able to figure this out. Even the simplest of things can trigger it...getting out of bed, rolling over, reaching to turn out the light, getting dressed, undressed, picking up something on the floor that's dropped, reaching to get something in the cupboard, snuggling with my dd's, hugging (this TRULY sucks), carrying anything, picking up anything, sitting down, getting up out of a chair, sneezing, coughing, anything that startles me (the automatic response to quickly turn your head to look at whatever made the loud noise, etc.), stretching, turing the key in my front door, sitting, standing, lying down, basically ANY position other than sitting absolutely still & straight, with no movement whatsoever...the list goes on and on ad nauseum! Every aspect of my life is affected by this. It prevents me from doing all the things i most enjoy in life. It affects my relationships, with friends and my family.

The hardest part of all is the effect its had on my dd's. They are incredibly understanding, and supportive, and nurturing (of course, i SWORE i would never turn my children into MY caregivers...my worst nightmare has come true!). And they have modified their entire existence to try not to do something that would trigger my "pain" even more. Of course, accidents happen ALL the time...all it takes is a little nudge the wrong way, or someone dropping something accidentally, or an overzealous hug or cuddle that leads to a bad movement for me...i feel like they live in a prison when they are around me. Everyone treats me with kid gloves, trying not to make things even worse than they already are. It feels like such an unnatural life for children to live this way! They are always trying to do things to protect me, to help me (they carry the bags, they open the doors, they do all the stuff i can't manage on my own). They are absolutely awesome, but yet i can't help but bear the overwhelming guilt of not being the mama i want to be with them. I can rarely play with them, i certainly can't sit on the floor with them, or just be in the moment with whatever they are doing. I carried both of my babies on my body for FOREVER and a day, did extended bf'ing, family bed, the whole deal. Now, i find myself desperate to create space between us, just to avoid any accidental bumps or whatever that will set my body off. Its a horrible feeling, and goes against what every cell in my body truly wants to do. I want to be with my girls, i want to hold them, to be close to them, to play with them, to enjoy them, laugh with them, to feel joy with them. This body of mine robs me of all of that. It robs me of all the things that bring me joy in my life.

So, what IS this mystery thing?? I really have no answer to that. Part of my ongoing frustration is that its SO difficult to explain to anyone. I call it "chronic pain" for lack of a better term, and because "pain" is the only word that people seem to be able to relate to. As soon as i drop the word "pain" from my description, people seem to immediately go down the road of doubting what i'm saying, not believing the immense intensity of it, chalking it all up to stress (don't you just LOVE that one!), and basically dismissing it as anything 'real'. Believe me, i have had many days where i question my own sanity, wondering if i am totally imagining this whole thing. But when the intensity hits me, to the point of incapacitating hell, i know, without a doubt, that this is truly real. I guess that's the nature of these chronic conditions...it starts to mess with your mind. I would define myself as someone with incredibly strong intuition, a healthy self-image, and a lot of strength, but when it comes to THIS, its all out the window. I doubt myself, i feel ridden with failure, hopelessness, powerlessness, guilt, and at times, i loathe myself and my body. I feel like two different people. This condition, whatever it is, has totally changed who i am. I ache inside, for the woman that i know is lying dormant inside of me, aching to come alive again, churning to be heard and understood, and most of all, healed. I can not bear the idea of living the rest of my life trapped in this hellish existence.

My latest theory is that there's something neurological going on. I used to think i was simply an alignment thing, and that my body just couldn't keep itself structurally stable. I still feel that this is an issue, the way that i can SO easily be reinjured, over and over again. I do have some fairly advanced degeneration of several vertebrae, both cervical (neck) and thoracic (upper back). I'm sure this is partly what contributes to it, but i'm convinced that there is something WAY beyond this. The intensity of what goes on in my body is so extreme at times that i literally feel like i'm going insane. Its like my neural pathways are totally going ballistic. I get these surges that rush through me and there is no stopping them. Its like every nerve in my body is firing full tilt and can't stop. I have no idea what brings it on or how to stop it. I feel nauseous (but not to the point of throwing up...its a strange nausea), off balance (although i don't fall over or lose my balance...but my sense of equilibrium is totally out of whack). The pressure is often unbearable. It can come and go and change totally unexpectedly. And yet, often, it just never leaves. It starts with the slightest, almost undetectable sensation in my neck/upper back area...i call them 'niggleys'...and when i feel that, i just know that its on its way to intensifying to the point of total overwhelm. Anytime i try to explain this to a practitioner, they look at me like i'm a lunatic. Maybe i just imagine this reaction, or have come to expect it based on so many bad experiences. Its so difficult to be doubted, questioned, dismissed. If they don't immediately know what my issue is, their egos tend to get WAY overinflated and they want to ditch me, so that they don't have to look bad. UGH!

The worst part of ALL of this, is that as soon as i start venting about it (like now), i beat myself up for being negative, for not being positive, for coming across as a 'victim', oh-woe-is-me, pathetic complainer. And yet, the truth is, i feel trapped. I feel desperate. I feel scared out of my mind. I feel really, really alone.

I really need to find some compassion for myself. But i really struggle with this...can't quite figure out why, cuz logically, i know that its not my fault and i'm doing everything i can to get through each day. Yet, i still find ways to be really, really hard on myself.

The past month or two has been particularly difficult for me. I think i've reached the crisis point...the place where i'm starting to give up. I'm losing hope. I'm feeling like i desperately need help, but i have no where to turn. I don't have anyone i can fully put my trust in, when it comes to my health and well being. I've been disappointed SO many times by people that call themselves healing professionals. I am terrified of allopathic medicine...its truly not my comfort zone. I am totally inclined toward natural healing. I've tried SO many things, and nothing gives me any kind of lasting relief. I used to go several times a week to my chiropractor, simply to have 5 minutes of respite from the craziness i feel. That's how desperate i was. I would spend HOURS driving and sitting in waiting rooms (uncomfortably so), waiting to see these supposed healing gurus, but to no avail. I'd be back to square one, or often WORSE, within minutes of leaving their office.

I believe that body's are designed to HEAL, not to self-destruct. So, why can't my body heal???

I guess what i'm really hoping for tonight is some hope. I have no idea what that would even look like to me right now. I just know that i'm really hitting the wall here, feeling truly alone, terribly scared, and not having a clue where to turn. I am open to ANY wisdom that comes my way.

What do you all do to get by? How do YOU do it? I know how unbearably hard it is for each and every one of you. How do you keep going, after years of this wearing down your body and mind and spirit? I'm so tired of the struggle. I don't just want to plod along through life, feeling like my life is over. That the best years are behind me. That its all downhill from now on. I can't bear to exist this way. I need to dig deep and find myself a WHOLE lot of strength. I want to be healthy. I want to thrive. I want to be ALL that i can be. But how???

Thank you so much for your listening ears. I know you got a HUMONGOUS earful tonight!

Hey, its great meeting you all...for better or worse, here i am!

rest well, y'all!

~mamamoon3
post #76 of 179
lol... I know all about eating hodge podge dinners. I'm so bad at making food for myself at night.
post #77 of 179
Mamamoon3, welcome! I am so sorry you have to be here, and I am also sorry to hear about everything you have to go through!!! It sounds like a living h#ll. My heart goes out to you and I wish I could give you some advice, but I don't have any experience with that type of problem.

As for me, I've been totally steamrolled with migraines and fatigue lately. I got the mother of all migraines last weekend and could barely function for two days. The thing is, I finally started taking the Topamax to prevent these things, and I totally HATE the stuff. The side effects are worse than the dam headaches. It makes me woozy and shaky, makes my legs all trembly and just gives me an overall feeling of ugh. Maybe it'll go away with time, but geez. I deal with enough fatigue without the meds causing more.

Which leads to my next question, what do you fibro/RA/lupus/etc. mamas do with the fatigue when it hits and the babies need you? I've been so wiped out lately. This morning I spread a "picnic" out on the living room floor and put on some DVDs (thanks to the Goddess for that 5-disc changer - and the kids know how to use it) and I laid down on the blanket while Lil' Man sat next to me and played. The other two watched movies and had a picnic with the baby while I dozed off and on, I just couldn't do much else, my whole body hurt and I was so, so tired. Finally I was able to get up and start functioning somewhat and now DS is reading, DD is playing Polly Pockets and Lil' Man is in the walker... but I'm looking at the dishes and this pile of clothes I need to fold and my heart's just sinking. I still have homework, too. How do YOU cope? Today's the worst in a long time with the fatigue.

This is when the thoughts come in that sometimes the fatigue is worse than the pain. There's meds for the pain (well, for some, I don't have any but what do you take for this feeling of having been hit by a truck?

Dragging myself off to the kitchen to make lunch now... :
post #78 of 179
Thread Starter 
hey mamamoon, welcome

that WAS an earful, but you write so well and your story is engaging...I'm so sorry that you are going through such bizarre pain with no diagnosis...that must just make everything worse!

I'm not sure what to tell you about where to find hope, I'm often on the fence there myself This thread may be a good place to start, a place where you can find others with sympathetic ears, and people who know what you're going through and can offer lots of

I was diagnosed with lupus a year and a half ago, so I'm pretty new to the chronic illness deal. It was a tough winter, but I'm feeling better now. I recently had to choose a health care path...my doctor recommended I start an immunosuppressant drug, and I just wasn't ready to go there. I was lucky because I had recently closed my business, so I was able to make some lifestyle changes that I hope will help my health improve - more time to do yoga and relax, was able to add additional acupuncture appointment etc.

Anyway, glad you found us

Serenity - to answer your question, I do admit to relying more on the TV than I would like. But on days when I'm just too beat to play, Bob the Builder is just so helpful!

***

One thing that I am working on myself is revising my personal expectations. I have always been a total type A personality, taking a billion classes at school, working at least one if not more jobs etc. and my expectations of myself were through the roof. My illness has really forced me to take a step back and re-think what's really important in life. For the first time in my life right now, I am not working. I am shocked to find myself as a stay-at-home mom, a position that I really never saw myself in. I have mixed feelings about it; I love staying home with my son, but am still drawn to working...hopefully I will come to some sort of balance

That is my primary goal these days - seeking balance both spiritually and physically.

take care everyone

--kristin
mom to simon, 8/30/06
post #79 of 179
Today is an extremely bad day health wise for me. I feel miserable. I am so dizzy and lightheaded. All I want to do is sleep. I really wish I had someone here to help me with the kids today, one of my biggest fears is passing out while caring for them. The older two know how to dial 911 of course, but still, it would be terrifying for them.

post #80 of 179
Quote:
Originally Posted by Amylcd View Post
Today is an extremely bad day health wise for me. I feel miserable. I am so dizzy and lightheaded. All I want to do is sleep. I really wish I had someone here to help me with the kids today, one of my biggest fears is passing out while caring for them. The older two know how to dial 911 of course, but still, it would be terrifying for them.



Be gentle with yourself, mama....
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