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post #21 of 179
Joining in. I have hemolytic anemia, which definitely makes life difficult with a toddler! Some days are worse than others... I'm out of breath all of the time, there are days when the fatigue is so bad I can barely get out of bed. I have been known to randomly passout (from lack of oxygen). These are the everyday symptoms, ultimately, I'm looking at heart failure as a very real possibility in my future. I have lived with this my whole life, but it was not until I was pregnant with my last child that I got a diagnosis.

On a good day, my hemoglobin level will be 7. I can not remember a time when it was above that. It's not as simple as taking iron for me... I actually received IV iron infusions every week for 3 months, and it made no difference in my levels. It's frustrating when people suggest I eat more "iron". I wish that was all it took! Right now I'm looking at my only treatment being blood transfusions (mulitple, as they are just a temporary "fix")

I have three girls - a soon to be 7 year old, 5 years old, and the baby will be 2 next month!
post #22 of 179
Quote:
Originally Posted by basmom View Post
I think whining is ok, especially when you are in pain ALLLLLLLL of the time. It is a hard decision to make when it involves your little one (your pain vs. nursing little one longer). I was lucky in that my RA symptoms disappeared at wk 18 in my pregnancy (I remember waking up, walking to the bathroom, and thinking, "wow, it didn't hurt to walk") and didn't start to come back until ds was about 10months..and then it seemed to be a joint at a time. I stuck it out until he was about 14 months and then DH started to get really worried. He made the argument that DS got over a year of nursing (which was my original goal- until I changed it to 2 years) and it was time to be able to move as DS was becoming very active!
I don't think it's whining to complain that you have a disorder some doctors claim doesn't exist, a lot of people tell you is all in your head, and has completely destroyed your way of life. :

I am deeply and profoundly pi$$ed off that my life has changed drastically and nobody can make it better or give me real answers. There was a recent study that proved fibromyalgia patients had nerve abnormalities rather than nerve damage, so there is something going on doctors don't quite understand yet.

http://www.fms-help.com/nervous.htm The study makes me feel vindicated, but until they do something, or cure us, what good does it do us really?

I used to be active, productive and happy. Now I'm a lump, and I feel like I've really accomplished something if my house is halfway presentable and I haven't forgotten anything too important. I no longer hold a regular job where I used to work a full time job and at least one part time job. I almost never finish a project without it dragging on for months, where I used to get things done in a few days and be on to the next project. I have no concentration, no memory, the idea of going to school or taking a class is almost terrifying now....in the past I was a straight A student without studying and I taught classes in some of my workplaces.

I remember working with women who would talk about going home to eat dinner and sit on the couch in front of the TV, and I would think what's wrong with them, don't they do anything? Now I'm one of them because I have no energy for anything else. Sure, I read books, but I'm still on the couch like a big lump where I used to actually do things. It sucks.

And I go to doctor after doctor only to be told I have to accept this as a natural part of getting older? Bullsh!t. You don't go from being a dynamo to a lump overnight without something being wrong. You don't hurt all over for no reason. You don't go from being fairly intelligent to almost brain dead overnight unless you're the character in Flowers For Algernon.

And because this mostly affects women, it gets ignored, written off as psychosomatic, and ridiculed. I 100% believe if it were affecting more men than women it would have been cured a long time ago.

At least if you have something else people are sympathetic and know your disorder or disease exists and don't call you a liar, yk? Nothing like feeling like cr@p and being called crazy or dishonest at the same time.
post #23 of 179
I hear you Big Eyes. I have a lot of fibro like symptoms that are due to steroid induced myalgia that has not gotten better. Docs don't get me either. I'm not supposed to happen. They get hung up on that instead of focusing on what they can do to help.

The worst part is our healthcare changes constantly due to Dh's employer constantly trying to cut costs. So this month I am, once again, going to have to explain my history, which imo makes me sound like a hypochondriac even though I'm not and which is quite unusual and hope the ONE doctor accepting new patients can think outside the box. And that they will refer me to some specialists since my fantastic pulmonologist is now out of network and I haven't been to an endocrinologist since before DD was born.

ANYWAY, does anyone else ever beat themselves up about all the stuff they don't do and not give themselves credit for what they do? I find I often 'forget' I'm working with a handicap and I keep expecting myself to keep up with what everyone else does. And I get mad at myself until I remember, I'm not in 100% working order. I don't know why I do this. I guess maybe b/c feeling like crap is normal so I think I'm normal?

My other big challenge is weight loss. I am having such a hard time restricting carbs like I need to. DD gets to eat all my forbidden foods like Kiwi, pineapple, bananas, pears and I have not been able to not take a few bites when feeding her. I really need a zero temptation environment to low carb and with DD I can't achieve that which in turns means I'm not losing weight.

And I'm just getting back to exercise now that we've kicked our colds and I've gotten over the stomach flu.

V
post #24 of 179
I still don't know what I can eat. I used to be able to eat whatever I wanted, and when I go into remission I can again, so when I become the incredible lump woman I don't know what to eat at all.

Nothing sounds good until I'm suddenly ravenous and then I want the worst possible foods. I'm a carb fiend and I really need to keep more fast-grab protein on hand.
post #25 of 179
I often 'forget' about working with a handicap!! I guess because I look 'normal' and everyone expects I can do the same things as them, I forget that sometimes I can't. And when I try to 'keep up with the Joneses' persay I get tired and stressed out. Or depressed. And I have a hard time saying no. I don't understand why a little word is so hard for me...the class still doesn't have a class mom for ds, sure I'll do it, 4h leader quitting, can't have our club anymore, sure I'll replace him, co-worker quits, sure I should be able to pick up the slack...crap, I could go on and on, this is just the stuff in the last few months... And I work really hard to not let it affect what I let my kids participate in, ds wants to do a sport every season, ok, dd wants to do plays and softball and track, ok...and my dh works two jobs, and XH is useless at helping out, so it falls to me...blah...thanks for letting me vent...
post #26 of 179
Quote:
Originally Posted by bigeyes View Post
I am deeply and profoundly pi$$ed off that my life has changed drastically and nobody can make it better or give me real answers.


I'm undiagnosed, I just know something is wrong. I'm getting so tired of doctors. I explain again and again that my problems never occur in moments of high anxiety, and yet I'm told again and again to "just drink more water" or "this is common among young women when they get too excited."

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 an echocardiogram a few months ago that showed tricuspid insufficiency with elevated pulmonary artery pressure. The cardiologist says this shouldn't be causing me any trouble. BS, I say. I'm currently trying to get my records sent to a pulmonary hypertension specialist but my main clinic is sitting on my files as long as legally permissible.

Right now I'm pregnant, too, so everything gets blamed on that. But I know better. With my first pregnancy, I was running 3+ miles a day all the way until I was 40 weeks. This time, I am effectively housebound. I never know when my symptoms are going to strike, and it's not safe for me to be out in public trying to watch my 3.5 year old son when my heart is racing, I'm weak, and I can't catch a breath.

"Spoon theory" really speaks to me... and I hate those days where you think you've got seven spoons to budget out, but after you spend three you realize that's all there was for the day...

I feel so sorry for my son when he just wants to go to the park and mama can't take him. The simple act of dropping him off at afternoon preschool can totally wipe me out. It really impacts how I parent him, too. I end up snapping at him impatiently sometimes... not because I'm angry but because the long-winded GD-style explanation leaves me breathless and exhausted.

At this point I just want a diagnosis. I'm just so tired of living in this limbo where I know something is wrong but don't know what. ...where the doctors say I'm "perfectly healthy" but I can't keep pace with out-of-shape old ladies.

One thing I'm really lucky for, though, is my family. My partner and my mother are both incredibly supportive and behind me 100%.

I'm glad this thread was started. I know I've just complained in this post, but I often have had questions about becoming a better mother while dealing with health issues. I'm looking forward to learning more about all of you and how you cope.
post #27 of 179
Quote:
Originally Posted by Violet2 View Post
...does anyone else ever beat themselves up about all the stuff they don't do and not give themselves credit for what they do? I find I often 'forget' I'm working with a handicap and I keep expecting myself to keep up with what everyone else does. And I get mad at myself until I remember, I'm not in 100% working order. I don't know why I do this. I guess maybe b/c feeling like crap is normal so I think I'm normal?
Every... Single... Day.

I am always doing something and the next thing I know, I'm on the floor practically in tears because I overdid it. I don't want to be unable to do everyday things, so I keep trying to do stuff that I SHOULD be able to accomplish. Then I am in 10 times more pain than before. I *know* I can't do these things, but I also hate it that I can't. I beat myself up constantly and worry that no one believes the pain I'm in.

Quote:
Originally Posted by Sasharna View Post
At this point I just want a diagnosis. I'm just so tired of living in this limbo where I know something wrong but don't know what. ...where the doctors say I'm "perfectly healthy" but I can't keep pace with out-of-shape old ladies.
A part of me was disappointed when they told me I did not have RA. Because I needed to know that they knew there was something wrong, something they could treat. Saying I didn't have what I'd believed for years I *did* have was saying they didn't KNOW what it was. Luckily, my rheumy said "We're still going to figure out what's wrong - this doesn't mean I don't believe you." I wanted to sob with relief when he said that.

Fibro is a disappointing dx though because so many docs thinks it's BS. What I feel is NOT in my head, but trying to convince a skeptical doc that my widespread, nonspecific, chronic pain is not a ploy for attention gets tiring. And the fatigue... oy. I am tired... of being tired.

Today I got a scrip for Topomax, for the headaches. She said it may also help the insomnia (this is the general doc, not the rheumy). If not, she wants me to call back and she'll give me something for that. She said also that the Cymbalta should assist with the anxiety (maybe I will stop chewing my fingers into a bloody mess) but maybe not.... let her know. I can't even start that for another week, as I don't have the $40 copay.

*sigh*
post #28 of 179
I'm in. My diagnosis is Addison's Disease/Adrenal Insufficiency along with hypothyroidism.

The Prendisone I have to take sent me into a major depressive state so I started an SSRI. It seems to be helping. I also have been dealing with vertigo lately. A brain MRI was clear so hopefully it will resolve soon. So dealing wtih all that plus working about 30 hours a week and mothering my 3-year old twins .

Yesterday was a good day, today, not so good.
post #29 of 179
Quote:
Originally Posted by SeekingSerenity View Post
A part of me was disappointed when they told me I did not have RA.
Thank you for saying this!

When I got back the result about my pulmonary artery pressure, I literally whooped for joy... even knowing full well that if it turns out that I have primary pulmonary hypertension, I'll probably die fairly young. I felt so vindicated at long last. I wanted to take that result and shove it under the nose of every doctor and nurse who has insinuated all I really need is a glass of water and a xanax.

That probably sounds seriously messed up to a lot of people... but for me the uncertainty is the hardest part of any of this. There's a big part of me that would rather hear "You're dying next year" than "You're fine" when I know the latter isn't true.

Quote:
Originally Posted by SeekingSerenity View Post
Luckily, my rheumy said "We're still going to figure out what's wrong - this doesn't mean I don't believe you." I wanted to sob with relief when he said that.
I'm glad you were dealing with someone who truly wanted to see you feeling better. That is lucky!
post #30 of 179
Quote:
Originally Posted by Sasharna View Post
I wanted to take that result and shove it under the nose of every doctor and nurse who has insinuated all I really need is a glass of water and a xanax.
For years docs shoved tranqs and antidepressants at me, and now, additionally, I have adrenal fatigue, something that was made worse by those drugs. :

I kept telling then it wasn't psychological, it was physiological.

Another thing that kills me is, every time I start smoking again, my fibro and adrenal fatigue magically go into almost complete remission. There is a cortisol connection, and I have improved my health a lot by taking hydrocortisone, but nobody has been able to explain to me exactly why there are a group of patients like me (I've talked to others) who saw their health take a nosedive right after quitting smoking, and who have experimented with similar results. The brain fog never completely clears up, but I'm not entirely sure which illness to blame it on, yk? And I was only diagnosed with a sleep disorder in the past 2 years, so that may have been part of the brain fog problem, too, and I haven't smoked since I found that out.

I could start smoking again right now, and my weight would stabilize again, I would feel better, my head would clear a little, most of my aches would go away and I would only be mildly impaired instead of almost useless. But I would stink and spend a small fortune every month on cigarettes.

Even though there are a handful of us like this, and some migraine patients like me who also reported fewer migraines when they smoked, NOBODY can tell any of us why this is, or how to replicate the results without smoking.

Hell of a choice, isn't it? Smell great and feel like death, or feel alive, get dirty looks, stink and do something that everyone says is gonna kill you?
post #31 of 179
Thread Starter 
it's so hard dealing with having to take drugs while trying to live a natural lifestyle...I'm currently on prednisone and really don't want to be on it, but can't deal with the pain without it hopefully my flare will go away ... sometime ... and I'll be able to get off the steroids

bigeyes, that's quite bizarre about the smoking, though could it be a stress thing? I would think that smoking is relaxing for smokers, so it cuts down on stress...

my weird thing these days is caffeine...I had cut out caffeine for a long time, but now I find if I drink one Coke a day, I have soooo much more energy and can actually get some stuff done...so I'm self medicating with a drink of soda most days

I've been sick for weeks (think I caught my DS's cold a while back) - I think it's time to start feeling better, who's with me?? :

and for those of you who are weaning due to drugs, if you want to do further research about the safety of whatever drug and BFing, here are a couple great resources:

Motherisk's Home Line - (416) 813-6780
for information about the risk or safety of prescription and over-the-counter drugs, herbal products, chemicals, x-rays, chronic disease and infections during pregnancy. -- very helpful

Kellymom.com - http://kellymom.com/health/index.html

Breastfeeding and Human Lactation Study Center (phone 585-275-0088) at the University of Rochester, NY

Dr. Thomas Hale's books: http://neonatal.ttuhsc.edu/lact/drhalebooks.html
post #32 of 179
Quote:
Originally Posted by coop_mom View Post
bigeyes, that's quite bizarre about the smoking, though could it be a stress thing? I would think that smoking is relaxing for smokers, so it cuts down on stress...
I've looked at everything I can think of. I've been through a marriage and a divorce, heavy stress, at times worked several jobs at once, had plenty of money and no money, had a stalker, had a murderer for a neighbor, moved several times...maintained my health through all of that, then I get sick when things are relatively OK? That makes a lot of sense, doesn't it? Maybe I thrive on chaos. But then when things really fell to he!! a couple of years back I got my sickest ever, so it doesn't seem to make a difference whether I'm stressed or not, single or married, can't find a climate connection since I've lived all over....the only constant I've found is smoking or not, and I notice the effects almost overnight.


But I can't justify $60 a week for smokes and there has to be a medical reason why it makes me feel better other than just the cortisol. I thought I was nuts until I started hearing the same thing from other women, most of them either fibro or thyroid patients, so there is a connection there. I keep tweaking the cortisol dose and feel better for a while, think I've got it whipped, then I feel lousy again. I seem to be cycling faster now instead of having years of remission I only get a few months and then I crash again...don't know what that's about.

I've also seen adrenal fatigue related to PTSD, so maybe stress causes setbacks? That makes sense. Maybe smoking kept my nerves more level? The thing I read a long time ago that set the bells ringing said something about cortisol stopping the adrenaline rushes, and that seems to be what I was having for most of my life, these rushes of adrenaline that I thought everyone else had, too, only they didn't. Since I started taking cortisol I no longer shake when I get upset or angry, and I've done that my entire life as far back as I can remember. I still get sick if I don't eat when I need to, but not like I used to, immediately getting so sick to my stomach I almost threw up if I didn't remember to eat every 2 to 3 hours. Apparently that was all adrenaline and the cortisol balanced that out. When I smoked, it did the same thing. Now, you go tell a doc you're having those symptoms, and what do they give you? Xanax and antidepressants, which didn't help me at all, just made me sleepy and I still had the same physiological symptoms, caused by excess adrenaline.

For 35 years I was bone thin, ate enough for 3 people, and doctors all thought I had a mental problem and prescribed tranqs and antidepressants.
I'm no rocket scientist, but I don't think it takes one to see the flaws in their reasoning. : I kinda think I was just a big ball of adrenaline and someone (with medical training) should have seen it before I did, yk? But with all my research I still haven't found where anyone treats this other than by self-medicating.

Is it possible fibro is what you get when you've burned out all your nerves from years of over-reacting by being in a constant state of fight or flight?

What if fibro and adrenal fatigue are the same thing? Or closely related?

Or do you get one disorder and they just keep stacking?



Quote:
Originally Posted by coop_mom View Post
I've been sick for weeks (think I caught my DS's cold a while back) - I think it's time to start feeling better, who's with me?? :
Me! I've had a cold for over a week. They seem to hang on longer now, ugh. Everyone else sniffled for about 3 days, and I'm still miserable.
post #33 of 179
Quote:
Originally Posted by bigeyes View Post
I don't think it's whining to complain that you have a disorder some doctors claim doesn't exist, a lot of people tell you is all in your head, and has completely destroyed your way of life. :
Please please please don't think I called anyone a whiner. I agree with you. Sorry if my comment upset you.

Quote:
Originally Posted by SeekingSerenity View Post
I am always doing something and the next thing I know, I'm on the floor practically in tears because I overdid it. I don't want to be unable to do everyday things, so I keep trying to do stuff that I SHOULD be able to accomplish. Then I am in 10 times more pain than before. I *know* I can't do these things, but I also hate it that I can't. I beat myself up constantly and worry that no one believes the pain I'm in.
I can't tell you how many times this was me...
post #34 of 179
Quote:
Originally Posted by basmom View Post
Please please please don't think I called anyone a whiner. I agree with you. Sorry if my comment upset you.

No, I'm more commiserating than anything else. I just meant I didn't think you were whining.

You guys are the only people I really 'talk' to. I live in the middle of nowhere and I work from home. I see the people at the doctor's office once in a while, the grocery store occasionally if dh doesn't go for me, and maybe the post office once a week.

Being sick wasn't so bad when I at least knew people IRL. It's worse trying to establish a support system in a new community with no work friends or old ties.
post #35 of 179
Hi, joining in here on my 32nd birthday!

I have scoliosis/arthritis in my back and neck, low vision/eye fatigue, exercise-induced asthma, hypoglycemia, migraines and clinical depression. (It's such a relief to read that I am not the only one with such a huge laundry list!) For the most part I like to use natural treatments like chiropractic care and natural supplements to manage it all. I was on anti-depressants for years but was able to switch to St. John's Wort successfully last year. I still deal with chronic pain and fatigue daily.

Something I struggle with is meeting everyone's expectations. But since everything is a "hidden disability" I feel frustrated that I have to ask Hubby for help with the kids and the housework. His family especially are very judgemental and seem to have the attitude that if I would only exercise and eat right all of my problems would go away and I would have tons of energy like they do. They are also trying to get me to take Rxs for everything like the asthma when I don't want meds.

FTR, I do eat well, I exercise and take good care of my body. I also have managed to lose 70 pounds since my DD was born and have hit my target weight, which I am so proud of myself! But it's such a stuggle every day to keep up with the goombas, be there for hubby, take care of the house... and there is never any energy left over. Especially on a day like today when I have a ripper migraine and didn't sleep last night because of the pain.
post #36 of 179
I hate that we all can relate with one another due to chronic illness.. I wish no one had to deal with it. I am 23 years old and have been diagnosed with an Arachnoid Cyst in my brain, Undifferentiated Connective Tissue Disorder (as of now), Chronic PTSD due to childhood abuse, Migraines and Chronic Fatigue Syndrome. I feel like I am falling apart. I am always in pain. It took years for doctors to take me seriously due to my mental health. They always assumed it was my brain making up things. Then they found the cyst and started to listen thank goodness. I have been on Disability for going on 4 years now and to be quite honest, I feel like a complete failure. I'm in my last year of college, but the uncertainty of me being able to hold down a job scares the hell out of me. I'm a single mom, I NEED to take care of my DD. It's such an awful feeling. I've been in counseling since I was 6 years old pretty much non-stop. I've come a long way, but I feel like I have so much farther to go.

I have severe bone pain and night sweats. Very weird blood and urine tests too.. Doctors have no clue what to do with me.. Which is even more depressing.

Sorry to be all whiny, but it's nice to be able to vent to people who might be able to understand.. Although, I wish none of us were in this type of situation.

Thank you for getting this started
post #37 of 179
Quote:
Originally Posted by LenasMommy View Post
I hate that we all can relate with one another due to chronic illness.. I wish no one had to deal with it.

...

Thank you for getting this started
I agree, although finding this thread tonight was actually really liberating to me. Finally, someone who understands.
post #38 of 179
Quote:
Originally Posted by bigeyes View Post
No, I'm more commiserating than anything else. I just meant I didn't think you were whining.
Yeah, I guess it's a perspective thing:
I see it as venting
Others see it as whining
WE (this group) see it as commiserating


I'm sorry you don't have a big IRL support system. I AM lucky in that perspective. My parents are local (and awesome), my coworkers would do anything for me, and DS child care provider is a true friend. DH is starting to "get" how hard it is for me just to "maintain" the house/bills/etc, never mind taking on added projects. He really does a lot around the house and loves to spend time with DS.
post #39 of 179
Thread Starter 
bigeyes, I certainly wouldn't encourage you to smoke (it just seems like a bad idea, right??) but I am fascinated at how it affect you!

and this thread is totally fine for whining, where else can you find other people who will totally understand what you're going through?? I go to a few online forums where other lupus people hang out, but it's really the illness + the 2-1/2 year old that makes life so complicated

for example...this morning, my LO did not listen to a single.word.I.said -- wouldn't let me change his diaper, and I finally had to haul him up onto the changing table -- like I had the energy for *that*! it really wiped me out for the next 15 minutes

now he's climbing on me, claiming he's now a good boy, trying to get me to let him watch bob the builder...oy

this illness really screws up my life and makes me feel like a bad mama sometimes
post #40 of 179
Quote:
Originally Posted by coop_mom View Post
bigeyes, I certainly wouldn't encourage you to smoke (it just seems like a bad idea, right??) but I am fascinated at how it affect you!
It's frustrating. I've resisted re-starting now for 5 years, and I've felt like cr@p for most of it. A few times I've started feeling better and thought I'd beaten it, then I'd get a cold or something stressful would happen and wham! I'd be sicker than ever. So maybe as I get older there is a stress connection that wasn't there before? It's just so frustrating that when I stopped doing all the stuff that is supposed to be bad for me I got sick.

For literally years I worked in bars, smoked 3 packs of cigarettes a day, drank several nights a week, smoked pot, ate cr@p food...and I felt fantastic. My cholesterol was fine, blood pressure was fine, I had no aches and pains, went several years with no migraines at all....and this was in between some of the years where I had been having daily headaches.

It makes no sense I could do all the things you aren't supposed to do and be 'healthy' and then start paying attention to my health and spend the next decade being sick. I make a change and notice a slight improvement, think it's working....but no long term total flip-flop into good health. It's hard not to think I may as well be smoking, drinking and eating lots of greasy food, yk?
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