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sickie mamas tribe (parenting with a chronic illness) - Page 7

post #121 of 179
Hi ladies!

I'm so sorry so many of us are going through this...and hats off to those with more than one. I can barely handle my 3 year old.

I figured this would be a good place to discuss this...I posted awhile back, I had bone cancer in 93 and have since had 8 surgeries on my knee. I have been on crutches so many times its ridiculous, and its SO HARD to take care of my DD. Anyway, I'm heading into #9 and really am leaning toward amputating before the next surgery. Some people think I'm crazy, this leg could last a long time, they could do a 3rd knee replacement, etc..but, I am SO TIRED of the pain, of not having a life, of not being able to take care of my DD as I want to, of not being able to clean house like a normal person. The problem is, amputation and fitting a prothestic is a loooooong process, about 2 years. So I would have to wait until DD is older...
Anyway, what do you think? Am I nuts?
post #122 of 179
Can I join? I've got endometriosis and suspected Ehlers-Danlos hypermobility type. I suspect that at least one of my daughters also has EDS.
post #123 of 179
Thread Starter 
purplegal - big hugs, I can't imaging making a decision like that!! and I totally sympathize with having a 3 year old and health problems!

welcome inkslinger, though it's always a bit bittersweet having to be a member of this thread...
post #124 of 179
Hi Mamas!

I have lupus. Sometimes it can be tough raising an active toddler when you are in pain all of the time! If I'm having a bad flair, my DD will say "mama sick", and give lots of hugs

Currently pregnant with my second child, and having complications caused by lupus. My DP has been absolutly wonderful, helpful, and understanding when I am in to much pain to move.

I have sun sensitivity, so I can only really go outside when it is raining/overcast, or at night. The sun is very intense in Hawaii. On the few occasions I have felt up to it, we have gone on night swims at Ala Moana beach park!
post #125 of 179
zenmama... Lupus is tough. My sister was initially diagnosed with it, but eventually they determined her issue was actually RA. She's doing okay with the meds, but of course she's sick all the time.

My fibro has been flaring the past couple of days. I've completely weaned off the Cymbalta so everything has come screaming back. My rheumy told me fibro doesn't usually involve hand problems, and my hands, fingers and wrists have gone back to aching miserably all the time. He had thought that, plus the hip bursitis (which is also back ) were due to the vitamin D deficiency. My supplement really seemed to kick all that back, so now I am wondering if I'm deficient again as well as having to deal with the fibro.

Good news is I will have health insurance again on Sept first, so I can get back to my doc at that time and get the vitamin D levels checked, as well as get back on the Cymbalta. (That stuff... wow, it gave me my life back.)

In the meantime, our homeschooling starts next week and Lil'Man is teething, plus DH's new job has him working 12-hour shifts (which is okay, he just got the job after 3 months of unemployment, so this will get us caught up on bills). So I am tired. Sore. But hopeful... which is a good thing.

: strength and healing to all you mamas....
post #126 of 179
Thread Starter 
hi zenmama

I've got lupus, too, with pretty severe sun sensitivity. What a pain, especially when you have kids! I have a 3 year old son, and it drives me crazy that I can't play outside with him

Glad you found this thread, hope you're feeling OK today!

--kristin
post #127 of 179
Hi all

Sorry. I haven't had time to read all the way through this thread yet - but I will! I read and posted as often as I could on the last thread before we changed over to this one.

I'm just curious how many other sickie mamas are homeschooling?

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!

I actually feel pretty confident what we will do at home. However, I'm just not sure how energetic I'll feel to drive to homeschool co-op meetings, events, etc. So for this first year, we'll just play it by ear. When I feel up to it, we do get outside a great deal. For instance, we've hiked 15 times so far in 2009! Even with my sickness, nature is very important part of our lives. I just know what I can (and can't) do.

For the record, my sickness includes: chronic pancreatitis and sphincter of oddi dysfuntion (which involves daily severe pain and nausea), asthma, endometriosis, ovarian cysts, and a bleeding disorder. Plus significant family history of cancer, and I've had several "pre-cancer" types of things, with bilaterally abnormal mammograms and colon polyps. I lost both of my half-brothers to colon cancer, and my half-sister is a breast cancer survivor.

Hugs to all. I hope you are having a wonderful day.
post #128 of 179
Quote:
Originally Posted by William's Mom View Post
Hi all

Sorry. I haven't had time to read all the way through this thread yet - but I will! I read and posted as often as I could on the last thread before we changed over to this one.

I'm just curious how many other sickie mamas are homeschooling?

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!

I actually feel pretty confident what we will do at home. However, I'm just not sure how energetic I'll feel to drive to homeschool co-op meetings, events, etc. So for this first year, we'll just play it by ear. When I feel up to it, we do get outside a great deal. For instance, we've hiked 15 times so far in 2009! Even with my sickness, nature is very important part of our lives. I just know what I can (and can't) do.

For the record, my sickness includes: chronic pancreatitis and sphincter of oddi dysfuntion (which involves daily severe pain and nausea), asthma, endometriosis, ovarian cysts, and a bleeding disorder. Plus significant family history of cancer, and I've had several "pre-cancer" types of things, with bilaterally abnormal mammograms and colon polyps. I lost both of my half-brothers to colon cancer, and my half-sister is a breast cancer survivor.

Hugs to all. I hope you are having a wonderful day.
Just found this thread and suppose that I belong here.

We h/s our 5 and 3 yo.

As for me, I have endo, IBS (I can only tolerate about 2-3 veggies and some meats. That's it.), and "watermelon stomach". Sometimes, I wonder if these afflictions are really just one thing that hasn't been figured out yet.

DH also has chronic fatigue. Is their a tribe for both parents w/ chronic illnesses?
post #129 of 179
Oops! Somehow, I had double post.
post #130 of 179
Seeking Serenity, That is interesting that your doc said fibro doesn't affect the hands... I have never heard that. I have been battling fibro most of my life and it has definitely affected my hands... more so recently. A friend of mine that has fibro also has had a lot of stiffness and pain in her hands as well.
post #131 of 179
Ugh, my Essure failed. I am going in next week (26th) for a bilateral tubal ligation, and while they're in there my doctor is going to see what's wrong with my tube. BLAAAAH.

Oh well. I basically get to be pampered and taken care of for a little while so I'm not too sad about the whole thing. My grandma is coming down to take care of Toby so all I have to do is rest and recover. Who knows how long it will take before I feel up to changing a diaper
post #132 of 179
Quote:
Originally Posted by JSMa View Post
Seeking Serenity, That is interesting that your doc said fibro doesn't affect the hands... I have never heard that. I have been battling fibro most of my life and it has definitely affected my hands... more so recently. A friend of mine that has fibro also has had a lot of stiffness and pain in her hands as well.
I was just talking about this the other day with DH. My hands are swelling and aching and right back to the way they were when I was convinced my pain was from RA. All the fibro symptoms are back and that came back at the same time, so in my mind, it's definitely related! At the beginning of next month, we'll have insurance again, so I will be able to restart the Cymbalta, but I wonder about the doc, if I will have to see someone different (since the carrier is different).

Do any of you fibro mamas have issues with bursitis in your hips? That's something I've dealt with too, and it is also back. I was getting cortisone shots to help with that, but the Cymbalta also seemed to alleviate that.

Personally, I can't wait to get rid of this fatigue. I... HATE... being so wiped out. I'd scream and beat my pillow in frustration but I am just too tired.
post #133 of 179
I have to think the hand pain is related to fibro, especially as it popped up at the same time... mine seem directly affected when other fibro pain areas are flaring too.

I don't think I have the hip thing. Sorry!

I can totaly empathize with the fatigue though!! Every morning is such a struggle to get out of bed and get going... it's a vicious fight, and most of the day the fight continues to stay awake, some days my focus is totally non-exisitent due to the fatigue.
post #134 of 179
UM, so this is bizarre.

I have finally found out why I always feel like death when I stop smoking.

Smoking lowers estrogen.

I apparently have low progesterone and high estrogen, and high estrogen has the same symptoms as hypothyroid. I am hypo, but I am also high estrogen, and the reason my migraines always went away when I smoked was that my migraines are estrogen related.

My fatigue, heavy periods, hair loss, and many other symptoms can all be blamed on the estrogen.

So, my gyno has prescribed progesterone, but only for 10 days out of the month. I see my pcp in a few days and I'm going to ask if it wouldn't make more sense to use a cream for most of the month since when I was smoking I was altering my hormones on a daily basis.

This is sooooooooo screwed up.

When I smoke, I'm healthy, and when I quit my blood pressure goes up, my health goes downhill, and nothing works like it's supposed to. It's insane.

For years I've been begging doctors to tell me why this was, and when the gyno said my estrogen was too high, I got the answer by googling 'smoking and estrogen'

DUH.

I'm too old for the BCP, but when I was younger and on the pill, my headaches got better from the progesterone also. I also felt better during pregnancy because of the progesterone surge.

This blows my mind.
post #135 of 179
Quote:
Originally Posted by William's Mom View Post
I'm just curious how many other sickie mamas are homeschooling?

We will be starting soon. My ds is so excited. He can't wait. He turns 5 next week. I know it will be a struggle at times, given my numerous health issues, but we really feel this is the right decision for our family. And my husband will be helping out a lot, too!
We are homeschooling. I have not joined a co-op yet though I am looking into it, since my kids need the social aspect. We're in a playgroup, but most of the mamas are pregnant and/or working/teaching so it's been hard to get it going. So far I have been able to get some school in each weekday, but sometimes it is pretty tough and we stick to worksheets or reading and working from that. Other days I am okay to do more intensive stuff, and I never know how it's going to be from one day to the next. We need to go back to the library and I'm thinking about working from a curriculum for at least part of it, so I know I'm getting in what they need.

DH has been amazing in helping with the kids in the evening, with regards to reaffirming what they learned through the day. He is great at helping to apply what they're learning to everyday stuff, a very unschooling approach (though I'd never tell him that).
post #136 of 179
Quote:
Originally Posted by bigeyes View Post
This is sooooooooo screwed up.

When I smoke, I'm healthy, and when I quit my blood pressure goes up, my health goes downhill, and nothing works like it's supposed to. It's insane.
Oh mama, I am so sorry! I always felt better when I was smoking too. It just seemed to sharpen my focus and make me feel, I don't know, more centered. Even if I wanted to start again though, which I don't, I couldn't justify the expense!! I never thought I'd see the day when some convenience stores charge over $6 for a pack.

Plus there are so many negative impacts. It stinks... there ARE positives to it, no matter how evil the additives and chemicals make it.

post #137 of 179
Quote:
Originally Posted by SeekingSerenity View Post
Oh mama, I am so sorry! I always felt better when I was smoking too. It just seemed to sharpen my focus and make me feel, I don't know, more centered. Even if I wanted to start again though, which I don't, I couldn't justify the expense!! I never thought I'd see the day when some convenience stores charge over $6 for a pack.

Plus there are so many negative impacts. It stinks... there ARE positives to it, no matter how evil the additives and chemicals make it.

Yeah. There are too many reasons not to, but at least now I have an answer. I'm hoping next week my doc can figure out a way to get my body what it needs to make things right.
post #138 of 179
Just popping in... have been on a couple of the older threads but ran across this one and thought I'd sub.

I am a childhood cancer survivor with only one eye. I have PVFS, CFS, FMS and OA in a wrist, both shoulders, hips and knees.
post #139 of 179
Wow, Indigo! You're really a trooper!
post #140 of 179
Thread Starter 
hello all, just checking in to say hello and hope things are going well for everyone as the holidays creep up on us!

lots to do, do you have the energy to get it done?? I'm so so these days, my lupus has decided to kick my a**, so I seem to be able to get stuff done, but by 1 or 2 in the afternoon, I'm ready to nap the rest of the day zzzz

I'm currently having to decide if I should go on cytotoxic (chemo) drugs for my lupus...if you'd asked me last year when I was saying I didn't want to go on *any* drugs if I'd ever get to this place, I would have said no way...but here I am, unhappily considering this nasty stuff...more discussion with my doctor I guess, and maybe a second opinion? oy

I hope everyone is doing OK! Come by the thread and say hello

--kristin
diagnosed with lupus, oct. 2007
mom to Simon, age 3.5, married to my super DH Paul
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