sickie mamas tribe (parenting with a chronic illness) - Mothering Forums

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#1 of 179 Old 03-05-2009, 01:44 PM - Thread Starter
 
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hi all-

I wanted to start a new thread for the sickie mamas out there! I'm dealing with raising a 2-1/2 year old son after being diagnosed with lupus about a year and a half ago...man is it tough!

So I just wanted to say hello, and offer support and hugs to those of you who need them...I know I could use a few hugs myself! :

It's so hard when my body is so much in pain to chase a toddler around! oy! :

--kristin
mom to Simon, 8/30/06
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#2 of 179 Old 03-05-2009, 02:23 PM
 
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Great thread!

I suffer from 2 very rare neurological diseases and several bone malformations in my neck and back. I have had major brain surgery and a metal plate in my neck with 4 screws! The neuro problems cause about 80 neuro symptoms daily along with chronic pain. In a nut shell, my skull is too small for my brain and it falls down in my spinal column thus causing a lesion in the center of my spinal cord that is progressive. I am slowly going paralized from the neck down and one day, I will require a wheelchair. I must use a cane on and off depending on the day. Some of my symptoms are daily headaches, blurred vision, severe muscle weakness in my hands/arms/legs, chronic pain from head to toe, numbness/tingling, memory loss, joint pain, etc.

There is no cure for these, and the brain surgery that I had after my dx is the only "treatment". I will have to have another one sometime in the future. I had 1.5" of my skull removed, my dura opened (hard outer layer of brain), and my C1 vertebra in my neck shaved down. The point is to open up the back of the skull to allow csf flow to restore to my brain since I had virtually none and suffered a stroke like episode shortly before surgery. No meds help either other then very strong narcotics. I refuse to take these b/c I have to care for my children all day alone so I want to be in my right mind so I am med free. It's really hard suffering with these different symptoms and not having any meds that help. There isn't much research being done b/c it is so rare (only about 300,000 people have this).

I was dx almost 5 years ago, when I was just 24 years old and now I am raising almost 3 y/o twin girls! It is hard to say the least. But we take it a day at a time and I try to do my best as a mother and wife. I have a supportive husband who is very helpful (most days ).

mama

single mommy to identical twin girls (3/06) Non-traditional mama just : through life.
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#3 of 179 Old 03-05-2009, 03:46 PM
 
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Chiming in again. Glad to see we have another thread! Thank you to coop_mom for starting one! I am mama to a 4 year old and twins who are 2. I was diagnosed with moderate-to-severe ulcerative colitis two months after the twins were born, and was sick for 16 months before we finally found a drug-and-diet regimen that put me in remission. That was hard, because I had to wean the twins before we were ready, but I'm doing well right now, actually. The main issue I have right now is that I'm on 6-mercatopurine, which suppresses my white blood cell count, which means I have very little defense against infections, and with a child in preschool, we have a zillion colds in this house. So far, the highlight of my year was last summer, when I had second-stage Lyme AND freakin' MUMPS-- at the SAME TIME.

But really, I'm counting my blessings. I'll take recurring pinkeye and a zillion colds over a bleeding gut, anyday.

Anyway, just wanted to say hi and introduce myself again. These threads are always such a great support, so I'm really glad to see another one going.

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#4 of 179 Old 03-05-2009, 06:59 PM - Thread Starter
 
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glad to see some folks chime in here, though sorry we have what we have in common!

I just weaned my son at two and a half...I didn't want to wean, but finally had to prioritize my health, it was just too much, I didn't have energy to spare.

angie, wow, sounds like you need tons of hugs!!

and llyra, 2 year old twins, whoo hoo! hope your 4 year old helps chase them around!


take care, chat soon

--kristin
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#5 of 179 Old 03-05-2009, 08:28 PM
 
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What an interesting thread!

I'm Sharon, and I was diagnosed w/hypothyroidism last year. I have also been tentatively diagnosed w/Sjogren's Syndrome, and probably have chronic fatigue syndrome, too. I seem to have alot of neurological symptoms (aka "brain frog") which may be related to the Sjogren's. We were in the middle of a bunch of testing, and I got pregnant (!), so we have to wait until the baby's born to keep going.

I also have a profound hearing loss in the left ear (perf retracted ear drum) and moderate hearing loss in the right (sudden, autoimmune hearing loss) requiring the use of a hearing aid.

I have a 9YO and now I'm expecting again. This pregnancy seems to have really thrown me for a loop, since I seem to have hyperemesis, too. Ahhhh!

Good luck to all the mama's out there! :

Mom, wife, full-time student.  And tired.  DH, DS#1 (9/99) and DS#2 (9/09), and 2 dogs.

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#6 of 179 Old 03-06-2009, 01:09 AM
 
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Hi mammas!!!

I was recently diagnosed with hypotension(low blood pressure), i suffer from migraines( that have been getting worse these days).
I dont really know what wrong with my body, I'm sick most of the time.

I feel like a 70 year old lady, actually a 70 year old is healthier than myself.

I've been in and out of the hospital since January and Im getting tired of it.
I bet there's something else besides the hypotension. Im just not healthy.

I feel something is seriously wrong with my body, but everyone thinks that im just being paranoid:

Im coughing my brains out as im typing this...

Alee, mamma to Leon (2) and expecting #2 May '10 :
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#7 of 179 Old 03-06-2009, 01:30 AM
 
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s and strength to all the mommas here.

I'm an asthmatic and am pretty well controlled, but when I'm sick, I'm sick.

But the asthma is the easy part. I am super sensitive to steroids and had suppressed adrenals throughout my 20s (yes, really the entire decade) resulting in infertility, weight gain, and muscle problems and goodness knows what else. They don't really know b/c this wasn't supposed to happen.

I have some level of pain in my muscles daily, can't even lift weights for my upper body--DD is killing me and I now have bad pain daily in my elbows-- and take a lot of anti-inflammatories.

I'm always tired and have a hard time keeping DD busy. But we are managing. SAHMing helps take some of the stress off.

V

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#8 of 179 Old 03-06-2009, 01:22 PM
 
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Hi everyone. I also unfortunately belong here. I have a bunch of medical problems. I have severe fibromyalgia and probably lupus (they are still doing tests). I also have irritable bowel syndrome, interstitial cystitis, GERD, polycystic ovarian syndrome and bipolar disorder. Wow, didn't realize how long that list looks! Anyways I am very incapacitated by all of my illnesses and parenting is a struggle. I used to homeschool but had to put my kids in school this year so I only have the one at home. We always wanted more children but that is just impossible with my health so my little one is our last. Nice to meet you all!

Shawna, married to Michael, mommy to Elijah 1/18/01, Olivia 11/9/02, and Eliana 1/22/06
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#9 of 179 Old 03-06-2009, 01:49 PM
 
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everyone

Quote:
Originally Posted by Aleo View Post
Hi mammas!!!

I was recently diagnosed with hypotension(low blood pressure), i suffer from migraines( that have been getting worse these days).
I dont really know what wrong with my body, I'm sick most of the time.
I posted above but I also have hypotension. I mainly get blackouts with mine after I stand or sit up. Sometimes it just hits, it's done it a few times while I was driving! I increase my salt intake and that helps manage it. I don't have the black outs nearly as often. My normal bp is 80/50.

Quote:
I have severe fibromyalgia and probably lupus (they are still doing tests). I also have irritable bowel syndrome, interstitial cystitis, GERD, polycystic ovarian syndrome and bipolar disorder.Wow, didn't realize how long that list looks!
LOL! I know what you mean. I had to fill out new ins. paperwork this year and I had to use another piece of paper just for all my conditions! The bad thing is I am undx with another med condition right now b/c it is rare that no one around here can dx it. I have to fly to my Neurosurgeon specialist in CO (I live in Indiana) for him to dx it.

single mommy to identical twin girls (3/06) Non-traditional mama just : through life.
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#10 of 179 Old 03-06-2009, 02:45 PM
 
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Originally Posted by Sharon, RN View Post
What an interesting thread!

I'm Sharon, and I was diagnosed w/hypothyroidism last year. I have also been tentatively diagnosed w/Sjogren's Syndrome, and probably have chronic fatigue syndrome, too. I seem to have alot of neurological symptoms (aka "brain frog") which may be related to the Sjogren's. We were in the middle of a bunch of testing, and I got pregnant (!), so we have to wait until the baby's born to keep going.

I also have a profound hearing loss in the left ear (perf retracted ear drum) and moderate hearing loss in the right (sudden, autoimmune hearing loss) requiring the use of a hearing aid.

I have a 9YO and now I'm expecting again. This pregnancy seems to have really thrown me for a loop, since I seem to have hyperemesis, too. Ahhhh!

Good luck to all the mama's out there! :

Hi Sharon! I have Sjogren's Sydrome, Chronic Fatigue Syndrome, and a long list of others...I also have an 11 year old DS and am pregnant again! Sounds like we have a lot in common. I too have brain frogs, my dh says it's because I'm blonde...lol And I am soooo tired...

mama to dd16, ds13, and dd1 born 4/1/09 :
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#11 of 179 Old 03-06-2009, 03:58 PM
 
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If all I have is some seriously out of control Psoriasis, does that count?

My main problem is my itchy/scaly/flaky/bleeding skin right now. Which I do not have time or egergy to treat.

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#12 of 179 Old 03-06-2009, 10:40 PM
 
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Hi Sharon! I have Sjogren's Sydrome, Chronic Fatigue Syndrome, and a long list of others...I also have an 11 year old DS and am pregnant again! Sounds like we have a lot in common. I too have brain frogs, my dh says it's because I'm blonde...lol And I am soooo tired...
Wow, goodmomma, amazing! We're still not really sure about the Sjogren's, but I have the antibodies for it... ah, well. And I def have issues w/dry mouth/throat. The chronic fatigue is the worse! I had heard that pregnancy helps many autoimmune d/o in the short term, but I'm only like 13 weeks and I only feel worse.

I don't think my dh really "gets" how bad I feel. It's really hard sometimes, because he seems to expect way too much from me that I can't deliver. I don't really know how to deal with that.

Mom, wife, full-time student.  And tired.  DH, DS#1 (9/99) and DS#2 (9/09), and 2 dogs.

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#13 of 179 Old 03-07-2009, 12:16 PM
 
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Hello!

I have major depressive disorder, and I am currently recovering from a very severe episode. Parenting a little baby with depression is very hard sometimes. I've had to sacrifice breast feeding during the night because the lack of sleep was making me crazy. Now that I get more sleep, my symptoms are less severe.

Some days I just cannot do anything. I become paralyzed with fear, anxiety and hopelessness. Recently I've started to forgive myself for these days, and I just let them happen and let go of the guilt. I sit on the floor with the baby all day and I'll read or knit to take my mind off of things.

The house is in a perpetual state of chaos, because I never seem to get anything done. It's hard when DH comes home and I say I didn't get around to making dinner and he responds "Why not!?" He's been getting on me to cook more often because eating out is getting expensive.

The hardest thing about depression is that people don't understand that it is a debilitating illness and should be treated as such. I tend to blame myself, that I'm physically healthy and I should be able to do more. My DH reinforces it and the guilt becomes overwhelming.

Recovery is a very slow process, and I live in fear of the next episode. It gets better every day, though. My DH is very supportive (even though sometimes I need to remind him that I am sick).

Nik! Mama to Evelynn Rose 08/19/08 and Autumn Lily 11/02/10
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#14 of 179 Old 03-07-2009, 01:01 PM
 
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Wow, goodmomma, amazing! We're still not really sure about the Sjogren's, but I have the antibodies for it... ah, well. And I def have issues w/dry mouth/throat. The chronic fatigue is the worse! I had heard that pregnancy helps many autoimmune d/o in the short term, but I'm only like 13 weeks and I only feel worse.

I don't think my dh really "gets" how bad I feel. It's really hard sometimes, because he seems to expect way too much from me that I can't deliver. I don't really know how to deal with that.
They took a saliva gland from my lip to confirm the diagnosis of Sjogren's, that was 4 years ago. I don't think it's the Sjogren's that bothers me as much as the CFS, I think that is the real 'problem.' I know what you mean about your DH, mine doesn't get it much of the time either, but he got better as time went on. Now he says I need to slow down frequently. I know when I do more, what seems a normal amount for everyone else, I get exhausted. My rhuematologist advises regular exercise, which does seem to help, but it's so hard to accomplish. I pointed out to my DH once when he was sick with the flu and so tired that I feel like that most of the time, it seemed to resonate with him then. My BF has rhuematoid arthritis, and hers went in to remission during pregnancy, but mine seemed to make me more tired in the beginning and pukey, way different than my first 2 pregnancies. But with 5.5 weeks left, I feel more normal, still tired, but I think comparing it to my DDC it's how they're all feeling. So it didn't put me in remission either, but I do feel more 'normally' pregnant now. So it may come for you to! You can PM me anytime you want! It's nice to talk to someone who understands.

mama to dd16, ds13, and dd1 born 4/1/09 :
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#15 of 179 Old 03-07-2009, 11:28 PM
 
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Hi.

I have hypothroidism and rheumatoid arthritis...waiting for the 3rd autoimmune to crop up - they usually come in threes, right? - I was diagnosed with the thyroid condition at 18yrs old (my mom has the same condition and recognized my symptoms - more extreme than a moody, tired teenager). I was not officially diagnosed with RA until last year. I don't have the rheumatoid blood factor, but certainly have the symptoms including elevated sed rate, pain/inflammation in EVERY joint in my body, fatigue, etc.

I have a very good rheumatologist (now...had to move on from the first one who wanted to "wait and see" - when I basically was crying all day from the pain) and am on some great drugs - they suppress my immune system though, so I've had some lovely cold this season, but like another mama said, I take that over crying all day in pain.

I did have to wean ds earlier than I (or he) wanted. He was almost two at the time. I just couldn't handle the pain anymore. I still get sad when I think about it. And, I probably won't have any more babies. I would have to stop all meds for three months before I could start trying and that scares me. I fell good now, but I can still "feel" that pain. Anyone else in this situation? How are you dealing with it? (oh- and four of my friends are pregnant now. I am so happy for them, really, but I can't help but feel a bit jealous...

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#16 of 179 Old 03-08-2009, 02:15 PM - Thread Starter
 
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Hello!
Recently I've started to forgive myself for these days, and I just let them happen and let go of the guilt. I sit on the floor with the baby all day and I'll read or knit to take my mind off of things.
I think it's great that you have changed your mindframe about your bad days...I changed my expectations of a successful day in general - I figure if I make it through the day, and spend it fairly peacefully with my child, then that equals a successful day If the cleaning and cooking doesn't get done, well, that's just too bad, I can only handle so much these days...

basmom, I weaned before I wanted to, also (though he was 2.5, so I was pretty much OK with it). We'd already decided that we were only having one child, so I'm glad I don't have to worry about trying to get pregnant again...the meds do make it so complicated.

and I'm really glad you found a better rheumy, I've gone to 5 over the past year and a half (plus two other natural doctors), and finally found a rheumy that I like (she does acupuncture, too). But it's a relief to find someone you can trust!

hope everyone is feeling OK today! we're enjoying some warmer weather here which is a treat I'm actually feeling well enough to get some cleaning done today, so off I go!
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#17 of 179 Old 03-08-2009, 10:10 PM
 
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Thanks for the welcom, co op mom! I have been feeling great, physically over the last few months. My husband, son and I have enjoyed nice long (slow!) snow shoe hikes this winter...I have even carried ds in the backpack for short distances on these treks. If you asked me to do this last year...I would have cried...So - it's a small victory for me.

I am still really sad about only having one baby, though...

"Hey, mama!" to the fried dough lovin', monkey-boy.joy.gifI'm back and ready to chat!

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#18 of 179 Old 03-08-2009, 10:28 PM
 
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hypo, fibro, migraines here. A few years back I kind of went into remission but it's all back with a vengeance. I'm hoping for another break soon. Feeling kind of useless at the moment.

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#19 of 179 Old 03-09-2009, 12:13 AM
 
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Subbing.

I have fibro and chronic vitamin D deficiency, and we're not all the way through the "rule this out, rule that out" phase of the dx process, so I have to still find out why I have chronic bursitis in my hips (cortisone shot in each side and they STILL hurt like $*&#!!). Got the daily headaches, too, extreme fatigue, debilitating pain (mostly from the fibro). Just started seeing a rheumatologist, and found out only last month that it's not RA. I'd been thinking for years that's what it was, as my sister has it and the symptoms were the same. But the blood tests and x-rays came back okay (except for the vitamin deficiency and elevated cholesterol).

I will be starting Cymbalta in a couple of weeks (been told I have to wean Lil' Man for that). That might help the pain, but I have had it for so long it sometimes seems it will never go away no matter what. That's depressing. (There's that, too - no bipolar, just major depression and anxiety.) Trying to wean is depressing too... he's only 8 months old and while I am SO ready to feel better and be a more effective mama, I don't want to wean. Lil' Man doesn't either... won't take a bottle or a cup. I have to give him stuff with a straw, one swallow at a time... talk about time consuming! It's not working very well.

Yeah, I feel like a whiner... thanks for listening and thanks for having this thread!!

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#20 of 179 Old 03-09-2009, 10:01 AM
 
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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!

"Hey, mama!" to the fried dough lovin', monkey-boy.joy.gifI'm back and ready to chat!

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#21 of 179 Old 03-09-2009, 10:36 AM
 
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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!

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#22 of 179 Old 03-09-2009, 02:15 PM
 
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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.

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#23 of 179 Old 03-09-2009, 02:34 PM
 
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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

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#24 of 179 Old 03-09-2009, 02:40 PM
 
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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.

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#25 of 179 Old 03-09-2009, 02:45 PM
 
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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...

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#26 of 179 Old 03-09-2009, 03:03 PM
 
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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.

Gallifreyan nerdfighter :, doting partner to the sasquatch , mama to the boss : (10/05) and the new little one (4/14/09). :: and hoping to :
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#27 of 179 Old 03-09-2009, 03:21 PM
 
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...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.

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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*

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#28 of 179 Old 03-09-2009, 03:40 PM
 
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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.

Let them sleep in the middle, Let them be little
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#29 of 179 Old 03-09-2009, 03:53 PM
 
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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.

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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!

Gallifreyan nerdfighter :, doting partner to the sasquatch , mama to the boss : (10/05) and the new little one (4/14/09). :: and hoping to :
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#30 of 179 Old 03-09-2009, 07:01 PM
 
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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?

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