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sickie mamas tribe (parenting with a chronic illness) - Page 6

post #101 of 179
Just checking in...haven't been here for a bit.

hugs to everyone...it seems like there have been some tough times over the last couple of months.

Hope you all have some good days soon.

I'm feeling pretty good. I am officially off my Methotrexate and feeling good. I still inject Enbrel weekly, but, may be weaning to every other week. We'll see.
post #102 of 179
Wow, am I glad to find this thread!! Is it ok if I join in?

I am a 31 year old mama of one DD, almost 3. She was a surrogacy baby, as I was unable to carry a pregnancy. To back up...I had bone cancer in my right knee and femur when I was 15. I had 9 months of very strong chemo, a limb salvage surgery, and got back to try a normal life. Since then I've been cancer free, but the problems from my knee and that chemo have been plenty! I have high blood pressure that developed at age 17, we're assuming from the chemo, and then at age 23 I had 8 months of chest pain where EVERY dr insisted was in my head, have some Prozac. BOY can I relate to many of your postings! I was finally diagnosed with Coronary Artery Spasms, and take daily long acting nitrogylcerin and it is pretty much controlled. But the main problem is my knee, I've had a total of 8 surgeries, something is always going wrong with it and at this point I'm wondering if it would have been better to amputate. Anyway, I had to have a major reconstruction on the knee when DD was 15 months old, boy was that tough! And now something is wrong again, involving my ankle, and they cannot figure it out. I've been on crutches 6 months for this latest thing, and its SO HARD to take care of DD.
Like many of you mentioned, I feel like such a bad mother all the time, the pain makes me short tempered and unable to do stuff she loves, like play chase, dance, walk to the park, go to the childrens museum, etc. I feel like a failure that I cant keep the house clean as well. I'm constantly beating myself up about all this. It's so hard not to be depressed about it. I recently went on Lexapro just to try to help.
Someone mentioned about it being hard to only have one, boy do I understand that! There is no way I can handle two children, plus we were lucky to do this surrogacy and wont be able to again. It makes me sad that my DD will not have a sibling.

Anyway, I tried to be short, I hope this group stays around cause I could REALLY use the support!
post #103 of 179
I am Katie, have fibromyalgia and Ehler Danlos Hyper mobility type.

DH has sleep apnoea, nerve damage in his back, shoulder probs and he is having surgery for a bulla in his lung on Weds this week.

So we have enough on our plates lol.
post #104 of 179
Quote:
Originally Posted by tireesix View Post
I am Katie, have fibromyalgia and Ehler Danlos Hyper mobility type.

DH has sleep apnoea, nerve damage in his back, shoulder probs and he is having surgery for a bulla in his lung on Weds this week.

So we have enough on our plates lol.
Just wondering if you have ever been tested for Chiari Malformation or Syringomyelia? I have both of them and a suspected case of EDS as well. Research is showing that EDS runs hand in hand with Chiari and Syringomyelia and a lot of people are misdx with Fibro when it's actually these other diseases. To be tested you have to a MRI of the brain, cervical, thoracic and lumbar spine. Also these are very rare so most local doctors are not able to dx it. I would suggest if you have had MRI's to get copies of the report and see if there is any mention of it from the radiologist. Specialists are usually the ones that can properly dx it. I live in Indiana and travel to Colorado for treatment.
post #105 of 179
Can I join?

I was diagnosed at 14 (1991) w/ Chronic Fatigue Syndrome and since 2004 I've had severe, chronic pain. We had a car accident and while we received chiropractic care and have even moved on to just maintenance, the pain has stayed for me. It's not every single day, but most. And some days are definitely worse than others. Earlier this week I thought I was going to cry. I guess this is probably fibro, although one doc suggested perhaps arthritis.

I also have a neurological issue that I don't have a name for. My parents had the MRI when I was 14 and then didn't continue the follow up. The only info I have for it, at this point, is cortical and central atrophy of the brain.

I need to get another MRI and see what happens.
post #106 of 179
Glad to see this tribe... I'm currently pregnant with my first (due in October 2009) and am concerned about how my chronic illnesses will affect my ability to parent. I was diagnosed with chronic fatigue syndrome 10 years ago and have spent much of that time too ill to lead what passes for a normal life. I've tried to both work and finish my graduate degree, but the unpredictability of disabling relapses has made that somewhere between tough and impossible. Dysautonomia is a BIG feature of my CFS, though there have been times when it has seemed like everything in my body was screwed up. Along the way, I was also diagnosed with IBS, interstitial cystitis, and hypogammaglobulinemia, a somewhat rare immune system disease that requires me to get my immune system in a bag for the rest of my life. And although that last one sounds the worst, it's actually been the LEAST of my problems since I've been one of the ultra-rare people who are asymptomatic - but I still have to be treated. The only problem is that I'm very sensitive to the IVIG and have twice developed aseptic meningitis as an adverse reaction.

DH and I have been together for 15 years, married for almost 10, and we've wanted children for a long time, but it has only been within the last year or so that I've been well enough for us to consider it. About two years ago, my doc decided to take a wild stab and put me on Wellbutrin SR in the hopes that it might give me some much-needed energy. Not only did it do that, but whatever it did to tweak my brain chemistry relieved a LOT of the dysautonomia symptoms, too. Within 6 months of starting the Wellbutrin, I was working part-time, hiking a little, and doing all kinds of other things I never thought I'd be able to do again. I'm still not totally well, and I still have relapse periods where I really struggle, but things have been so much better as long as I keep taking the Wellbutrin. I was so scared that with all my health issues and my age when we started TTC that I would have fertility issues, but after only two months, I was pregnant! So far, things are going well, but I have read that CFS women frequently feel better while pregnant and relapse after the birth. And like many CFS folks, I have sleep disturbance issues and if I DON'T get a good night's sleep almost every night, then my symptoms get worse... so the thought of parenting a newborn is really scary to me!

It's good to know that I'm not alone... and I salute all us moms and moms-to-be who deal with this kind of thing... it isn't easy! And being a parent aside, it's just plain tough to be in a relationship when you're chronically ill. DH is wonderful and has always been 100% supportive, but it's still taken some counseling along the way to help us deal with the issues that come up.

Health and happiness to you all!
post #107 of 179
Quote:
Originally Posted by zazenist View Post
So far, things are going well, but I have read that CFS women frequently feel better while pregnant and relapse after the birth.
Wow. I had no idea. I get another condition during pregnancy called Hyperemesis Gravidarum. Basically, the best way I can describe it, is that I'm allergic to pregnancy. It's like having really nasty food poisoning or stomach virus for the entire length of pregnancy. With my last baby it was 10 mos. (He was 43 wk 1d.) I could not roll over in bed w/o feeling nauseous and like I was going to puke. Also, toward the middle of the pregnancy I developed a symphisis pubic dysfunction (something like that!) where it felt like my pelvis was being ripped apart, slowly. And my hips hurt me MUCH worse during that time period.

Quote:
And like many CFS folks, I have sleep disturbance issues and if I DON'T get a good night's sleep almost every night, then my symptoms get worse... so the thought of parenting a newborn is really scary to me!
I had such a hard time the first 2-3 weeks, but I also had 2 older kids to look after. Sleep when the baby sleeps. Always. It will be your lifeline!!

I take melatonin for my sleep trouble. It helps. My Aspie son does, too. (Asperger's Syndrome. I suspect that may be another facet of my neuro issue.)
post #108 of 179
I was a member of the CIT...and I am needing to vent!

I am frustrated. RA dx was in summer 07 by elbow surgery synovectomy. I was (am still) in shock. At the time I was still nursing DD3, I was put on NSAIDs. I didn't take them b/c they made my stomach hurt and I don't like taking one med to combat the side effects of another so I just stopped. Did not want to wean DD for mtx. Heck, I still don't want to take MTX.

Things got slightly worse and I returned to my RA doc spring 08. MTX was suggested again, I was still nursing, but otherwise I informed my RA doc (a fellow fwiw) that I do not want to take MTX. Besides its toxic effects, it would seriously disrupt my life (I um have an active social life-yeah that's it...). So she put me on sulfasalazine. Well, it appeared to be working-but it worked too well. I ended up having a severe reaction to it-it caused bone marrow failure. RA Fellow doc was ending her fellowship as this came to pass, did not ask me to f/u on a slightly abnormal WBC count until two weeks had passed from the test. F/U on very busy (for me) Sat AM-within two hours the on call doc called me at home-wanted to put me in hospital (I had a terrible cold) or at least on 'prophalactic' abx. I declined, no fever, very very busy (DD1&2 had dance recital & rehersal). After going through three abx, an ear infection and strep throat (I do not do well with strep throat) I ended up recovering after quitting the sulfasalazine. But honestly it scared me to death.

It has ended up that I now see the head of the RA Fellowship program at the teaching hospital I go to. I really like her, she listens to me and my opinions. Is available via email if I have questions too. I have been on plaquinel since last August. It is/was not really working throughout the fall/winter. I had some improvement in January, but my suspicion is that that was from accupuncture (which has helped-I began that in January).

I had a visit last week. And although I do feel better than I did when I was first diagnosed (and before that) I am not where I need to be. My symptoms have improved b/c of the accupuncture but not b/c of the meds and not enough. I was sent for an MRI of my elbow joint b/c my doctor thinks that the synovium has re-grown-it hasn't even been two years since that first surgery. I don't want another surgery-that was the worst day of my life. She brought up adding anti-TNF biologics and a debriedment.

But dang it I just want my life back!!!!! Before all this I was a runner and in the best shape of my life. I want to be able to take my kids hiking or biking and not be spent for the rest of the week because of it. I want my house to look presentable again. I am so sick of this crap!!!! I want to be NORMAL!!!! I want to have fun with life and not dread the next visit to the doctor, or wonder when I will feel normal again....GRRRRRR I want to not have to worry about when/if the doc will call with my results and what that'll mean for me...

Heather
post #109 of 179
Thread Starter 
Quote:
Originally Posted by time4another View Post
But dang it I just want my life back!!!!! Before all this I was a runner and in the best shape of my life. I want to be able to take my kids hiking or biking and not be spent for the rest of the week because of it. I want my house to look presentable again. I am so sick of this crap!!!! I want to be NORMAL!!!! I want to have fun with life and not dread the next visit to the doctor, or wonder when I will feel normal again....GRRRRRR I want to not have to worry about when/if the doc will call with my results and what that'll mean for me...

Heather
I'm totally with you on this one Heather!!

sorry stuff is going crappy with you lately...I totally sympathize with not wanting to take meds

I have lupus, and am having to face the fact that I can't go outside...I have pretty sever sun sensitivity try coupling that with raising an almost-3-year-old boy while living at the Jersey shore

anyway, I'm with you, I want my old life back!! up until Oct. 2007, I was totally fine, and this new life is BS!

my newest heartache is the fact that I probably need to put DS in daycare because having him bored to tears while I sit around in a dark house, too sick to get off the couch, isn't really the best situation for either of us

hugs to all

--kristin
post #110 of 179
I'm lurking...you mamas are all very brave.

I feel like I have *something* wrong, but don't know what it could be. I'm on Zoloft for depression, but it's not working. I don't want to go back to the doctor because we've been playing with my dosages for over a year and I'm tired of bothering him! I do think I have mild Aspberger's syndrome, but don't really think there's a point in being officially diagnosed. In January I was diagnosed with a leaky tricuspid valve (don't know the proper term) which was caused by my pregnancy (my blood pressure skyrocketed to 220/140 when pregnant, I was induced at 33 weeks because of it.) I have chronic hypertension, which is controlled all right on meds, but my cardiologist is on my butt to lose weight because I am in the early stages of pulmonary hypertension.

It's really hard to cook healthy things when you're tired and feeling sick all the time, so weight loss isn't really going anywhere.

Anyway, I feel generally "yucky" all the time. Sometimes I have serious pain ... headaches, and bad cramps where the metal coils are from my Essure procedure earlier this year. Most of the time it's a generally sick feeling in my stomach, + dizziness. There's probably nothing wrong with me and I'm just a wuss, but I'm lurking on this thread anyway
post #111 of 179
((((((Krisis))))))
post #112 of 179
Hi, glad to find you fellow "sickies." I was diagnosed with breast cancer in 1998, and with a Stage 4 recurrence fall of 2008 (mets to liver & bones) after falling & breaking my hip. I spent 3 months in a wheelchair & doing radiation. I'm doing well now on just anti-hormonals (Arimidex & Faslodex) and a bone strengthening treatment. I will probably need to start chemo sometime in the near future, and am not looking forward to it.

My biggest challenge is a non-supportive partner. I know it's not easy when your spouse is sick, and raising young children is always a challenge. But many days it feels like I have to be the "well" one and DH gets to be the "sick" one. Very aggravating.

all around to those of us dealing with pain & lack of energy.
post #113 of 179
Thread Starter 
Quote:
Originally Posted by Krisis View Post
It's really hard to cook healthy things when you're tired and feeling sick all the time, so weight loss isn't really going anywhere.
yeah, this is a really big problem for me, too. Being on the meds I'm on, it seems that all I want to eat is white flour (pasta w/ butter etc). So much for eating healthy...

Quote:
Originally Posted by Krisis View Post
Anyway, I feel generally "yucky" all the time. Sometimes I have serious pain ... headaches, and bad cramps where the metal coils are from my Essure procedure earlier this year. Most of the time it's a generally sick feeling in my stomach, + dizziness. There's probably nothing wrong with me and I'm just a wuss, but I'm lurking on this thread anyway
From your post it sounds like there is something wrong with you, and it must be hard not to be able to put a label on everything combined together and everyone who feels like they should be here is welcome here

hope you feel better!
post #114 of 179
Quote:
Originally Posted by AfricanQueen99 View Post
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.
I find that my children often need more information like, "This medicine doesn't taste good. It doesn't taste like your children's medicine. If you want something special that tastes good, please ask me and I'll give you a spoon of honey instead." I'd much rather give them a treat than have them take any form of medication. There is so much mystical nature to everything children see because they just don't know. Telling them straight out that it doesn't taste good is something that they don't know. If you can be honest with them all the time, they will trust you and less likely to sneak it.
post #115 of 179
Quote:
Originally Posted by rachelernst.com View Post
There is so much mystical nature to everything children see because they just don't know. Telling them straight out that it doesn't taste good is something that they don't know. If you can be honest with them all the time, they will trust you and less likely to sneak it.
This is excellent advice.

My kids see me taking my meds, and while my 6-year old DS doesn't really make much of it, 3.5-yo DD always wants medicine. She will say, "My hips hurt!" because she knows that I take meds for the bursitis in my hips. I explain that if her hips hurt, we will take a warm bath or she can lie down and I will rub some sweet-smelling oil on her and give her a massage to feel better, but she doesn't get medicine. (I know her hips don't hurt, but I don't discount what she says by telling her I don't believe her.)

She learned what "this doesn't taste good" meant yesterday, though. She had dental work done for a decayed tooth, and she was hurting pretty bad. They gave us some prescription medication for her, and I tried Motrin first but she was still in pain a few hours later. One squirt of her Rx med into her mouth and she buried her head in the couch, refusing to open her lips for more. Stuff does taste horrifically bad, I tried a drop to see. I guess they do that so kids don't go in and chug the whole bottle? (That would be really bad!!)

It will be interesting to see if she is willing to take it after her next dental appointment. She has to go in to get *four* cavities drilled and capped with the stainless steel caps. Because the conscious sedation for yesterday's work didn't go so well, she will be under general anesthesia. But afterward, I imagine the lil' thing will be in some pretty bad pain.

Anyone ever consider giving their child a tippy cup a juice or milk for bedtime, send them my way and I can give them a very good example of why this is a terrible idea. Five cavities... ***sigh***
post #116 of 179
Hi mamas-I guess I'll chime in. I have bipolar disorder and OCD. I also have a heart condition that is not dangerous but causes chest pain and shortness of breath. Luckily I escaped PPD with both of my children but I find that my mania is harder to manage with the ongoing lack of sleep. Like a PP I have learned that my mantra just has to be "let it ride"-if I'm having a down day, I'm having a down day. It will pass like everything else.
post #117 of 179
...barefootmama
post #118 of 179
SeekingSerenity, I just have to say that every time I see your little caption-thingy I giggle. Oh how I love Firefly.

Ooh, and to be on-topic, I am going in next week for my Essure followup. They said to take 400 mgs of Motrin before the appointment, and whatever they are doing will take an hour (which for me, probably means 2 hours). I am very concerned. Sounds like this is not going to be fun
post #119 of 179
Quote:
Originally Posted by Krisis View Post
SeekingSerenity, I just have to say that every time I see your little caption-thingy I giggle. Oh how I love Firefly.

Ooh, and to be on-topic, I am going in next week for my Essure followup. They said to take 400 mgs of Motrin before the appointment, and whatever they are doing will take an hour (which for me, probably means 2 hours). I am very concerned. Sounds like this is not going to be fun
((((HUGS)))) Good luck, mama. I read about the Essure procedure and it just kind of gave me chills. It sounded so... invasive, I guess. I mean, yeah, it obviously works, but I just don't think it would be for me. When I get my insurance back (or should I say, if) then I am going to seriously look into getting a tubal, but that's because I just can't handle having any more lil' ones. Six is enough, I think, and then with facing going back to the unmedicated fibro issues... ugh.

I hope they can help you feel better.

Just remember what Jayne says: "If wishes were horses, we'd all be eatin' steak." I don't know how that applies here, but at least it should make you smile.
post #120 of 179
Thread Starter 
another firefly fan here

just chiming in to say "hello"

DS started daycare yesterday -- i have mixed emotions...I really know it's better for him than sitting around watching mama do nothing on the couch all day, but I'm sad it's come to this

it's going ok...yesterday was super, today he had a meltdown when I dropped him off but was OK throughout the day

hope folks are feeling OK!
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