sickie mamas tribe (parenting with a chronic illness) - Page 3

[Jennifer3141]

Hi everyone.

I've watched this thread for a long time, knowing I should probably be here or just pop in to give you all a virtual hug.

I have degenerative disc disease and arthritis localized in my lower back. Sneezing is the most painful thing in the world right now. I've had back pain my entire adult life but recently it has begun affecting my life. There are things I cannot do sometimes like yesterday. I couldn't bend down to pee, even on our handicap toilet. I had to wait for the painkillers to kick in because I couldn't imagine stepping over the tub lip to go in the shower.

My DH works long hours so he is unable to help out at home much. But he's generous with paying others to come in. I'm trying to get the house picked up so we can hire a cleaning lady next week. I can't even imagine attempting to mop the floors right now.

I'm having a hard time being 37 and accepting that I have to let some stuff go. I shouldn't have to do that for 30 more years, right?

And then sometimes I get a reprieve and go without pain for a few days.

The thread about leaving your kids in the car? I've done that. I've had to go to the gas station for milk and I knew that I had one, maybe two more bends in my back before I'd be incapacitated for awhile. I have called DH once when I couldn't bend down to buckle the kids back up. It took him 3 hours to get a break from work to rescue us. (Not to mention that CAFO milk from the gas station was already lowering my nutrition standards!!).

I'm trying to lose some weight to take a bit of pressure off my spine.

All of your stories make me want to open a commune for mamas like us. I'm sorry for all the pain you are all going through.

[LenasMommy]

Originally Posted by coop_mom

this illness really screws up my life and makes me feel like a bad mama sometimes

I can totally relate to this.. I feel so guilty all the time.. especially being a single mom and being sick.

[SeekingSerenity]

Originally Posted by bigeyes

Another thing that kills me is, every time I start smoking again, my fibro and adrenal fatigue magically go into almost complete remission.

OMG... I never thought about this... but you are SO RIGHT... :

Originally Posted by bigeyes

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?

Wow. That sucks. I still battle the urge to smoke, but the sheer cost factor is what keeps it from happening. I so cannot afford nearly $5 a pack. But d@mn, you're right... I feel better on so many fronts when I'm one of the social outcasts that exposes the rest of the innocent world to my cancerous fumes.

Originally Posted by coop_mom

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 - [phone]
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 [phone]) at the University of Rochester, NY

Dr. Thomas Hale's books: http://neonatal.ttuhsc.edu/lact/drhalebooks.html

I am totally going to check those out!!!

Originally Posted by bigeyes

...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'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.

(bold mine) EXACTLY.

Originally Posted by bigeyes

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?

Is it too late for you to enroll in medical school so you can be my doctor???!!!

That makes SO MUCH SENSE.

[bigeyes]

Originally Posted by SeekingSerenity

OMG... I never thought about this... but you are SO RIGHT... :



Wow. That sucks. I still battle the urge to smoke, but the sheer cost factor is what keeps it from happening. I so cannot afford nearly $5 a pack. But d@mn, you're right... I feel better on so many fronts when I'm one of the social outcasts that exposes the rest of the innocent world to my cancerous fumes.

I swear, if there were a non-stinky way to smoke, and it didn't cost a bundle, I'd be on it. The health aspects of it are no longer a concern for me because my health totally sucks anyway, yk? My quality of life is non-existent at this point.

I am totally going to check those out!!!



(bold mine) EXACTLY.

Originally Posted by SeekingSerenity

Is it too late for you to enroll in medical school so you can be my doctor???!!!

Lack of funds, poor health, brain fog.... I can't even imagine making an attempt at this point. The funny thing is, I just saw a doctor I really liked last week who actually suggested I start smoking pot again, though he doesn't advocate cigs. But nobody has come up with an answer for the reason why smoking cigarettes made such a difference in the way I felt.

It's too bad they're so nasty. I smell them on other people now and go EWWW! so I know I don't want to smell like that, but there has to be some other way to get whatever it was I was getting from them.

[SeekingSerenity]

Originally Posted by bigeyes

...My quality of life is non-existent at this point.

Yeah. I know. I have another bad headache today. The doc gave me an RX for Topamax, but I can't afford to go pick it up from the pharmacy until next week. And I am leery about it anyway because she said it's an anti-seizure drug. I know the migraine-dose is way lower than the anti-seizure dose, but I had a really, really bad experience with Neurontin about 10 years ago and now I am scared s*&#less about seizure drugs.

Doesn't help that my kids have all three been sick for almost a whole week and DD has decided that today is her day to lay on my lap and whine for hours straight. It's raining so every part of me aches. I have the energy of roadkill. I am going crazy.

[NikonMama]

Originally Posted by lucky_mia

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.

Have you tried switching to Hydrocortisone instead of Prednisone? I have Addison's also and the pred made me severely depressed and gave me anger/rage issues. As soon as I switched to Hydrocortisone it resolved and I've been fine since. I get depressed every now and then, but that is mainly due to personal issues rather than my medication.

[basmom]

Originally Posted by NikonMama

.... the pred made me severely depressed and gave me anger/rage issues. As soon as I switched to Hydrocortisone it resolved and I've been fine since. I get depressed every now and then, but that is mainly due to personal issues rather than my medication.

Oh yeah, the prednisone made me a very un-nice person! It really stunk because it actually made my pain better in that initial few weeks..so while my body started to feel better, my mind was all up in arms!

...and for some encouraging news from my RA front...
I was doing Enbrel injections and 20mg of Methotrexate (originally)...I have been feeling good over the past 6 months and my rheumy has given me the green light to slowly reduce the methotrexate. At my last follow-up, we decided to try 8mg (3 pills vs. the 8 of my original dose a year ago)

Keep your fingers crossed for me, please!

[Jennifer3141]

Originally Posted by basmom

Keep your fingers crossed for me, please!

You got it! How long will it be before you know if it's working?

[basmom]

Well...I forgot/didn't have the ambition to refill my Meth. prescription for about 3 weeks (hello brain fog - chalk that up to the hypothroidism) and started to flare (this was before the Enbrel was added). I would think maye 2-3 weeks?

[superstella]

So much of what you guys have said rings true for me too. My dx is in my siggy, idiopathic pulmonary fibrosis, and is terminal. Recently, however, the progression of the fibrosing has stopped and so I'm holding steady and hopeful for the moment. I too have good days and bad days, and some days I need to carry an oxygen tank with me - other days I breathe okay on "room air". Actually, thankfully, more days than not I can do without the o2 except when sleeping. I do get out of breath and tired soooooo easily. I'm on prednisone too, but only 15mg per day now. I've been on fairly high doses and hate hate hate the side effects but if it keeps me alive I guess it is worth it.

I have 5 kidlets, and my oldest is celebrating his 17th birthday TODAY! My youngest is 2.

[LucyVP]

Hi. I hope no one minds me joining in, even though I am not a mom. I'm 34 years old and have been thinking about whether or not I want to have children in the future, but am worried about how my health issues will impact this decision (or even make it impossible - who knows).

Anyway, I have a partial low spinal cord injury, which keeps me from being able to walk so I use a wheelchair to get around. The injury also causes chronic nerve pain in my legs and feet, which is the worst part of it, to tell the truth. I am currently working full time and get by OK, but I am pretty tired after a full day and the pain seems to get worse in the evenings. I'm on quite a bit of medication too.

At this stage of my life I don't even know for sure about the issue of kids, but I find it helpful to hear about how other people with injuries or chronic illness handle their families. I don't want to have a child/children and then be a sucky mom. I think I'd definitely have to stop working outside the home or cutting back if I had kids, so money also is an issue.

I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all.

[coop_mom]

Originally Posted by LucyVP

I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all.

of course it's ok, all are welcome (well, all *nice* people anyways...)

hopefully the info in this thread can help you if you're someday trying to make a decision about having a baby...

I didn't get sick until about a year after I had my son so I didn't have that difficult decision to make

basmom, good luck with reducing your meds, that's so great!

I'm on 20mgs prednisone, too, and luckily am not having noticeable side effects this time (I was on 40 in the past, and was a crazy raveneously hungry non-sleeping chatterbox that time...) - I'm hoping to get off the pred soon, but I don't really want to go off it until I stop waking up every morning with every muscle hurting in my body :

--kristin
mom to Simon, 8/30/06
diagnosed with lupus, sept. 2007

[foodymama]

[QUOTE
At this stage of my life I don't even know for sure about the issue of kids, but I find it helpful to hear about how other people with injuries or chronic illness handle their families. I don't want to have a child/children and then be a sucky mom. I think I'd definitely have to stop working outside the home or cutting back if I had kids, so money also is an issue.

I hope me posting is OK! I learn a lot on this forum but feel weird to post much or at all. [/QUOTE]

Welcome! I'm new to this thread too. I was dx with rheumatoid arthritis 19 years ago and I am 31. I had my first DD in June of last year and boy was it a struggle to get information from my rheumatoligist on the prospect of even thinking of having children. I couldn't get information or questions answered anywhere. I didn't find this community until DD was a few months old but if I would have known about it sooner I would be doing exactly what you are doing in order to get info. Good luck and I hope this thread provides you with help!

[foodymama]

So I'm interested in what types of activities you do with your children on really bad painful days. How do you remain involved?

[Sharon, RN]

I feel horrible today. I feel like I've been the worst mom to my ds. Tired, short-tempered. Blah.

This pregnancy is NOT making me feel better at all. I've lost like 12-15 pounds so far, and while the nausea is gone, the continuous vomitting isn't and I just don't know how much longer I can take it.

I'm sorry I just had to get this all out. My DH made us all take this trip to Maryland to visit some friends for a week, and it took all my energy and more I didn't have.

I'm just so tired of being sick.

[angie7]

Found out I need hip surgery yesterday. I have *another* rare condition Turns out this type of surgery has only been performed 2,000 times!!! Great, wonderful, sign me up

So now that leaves me with 2 very rare neurological diseases, Cervical Kyphosis, Deg Disc Disease, Scoliosis, hypotension, and this rare hip problem...Did I tell you that I'm only 29? ugh!

[Violet2]

Originally Posted by foodymama

So I'm interested in what types of activities you do with your children on really bad painful days. How do you remain involved?

I try to be really prepared with activities and things to do. I am always on the lookout for cheap and easy activities. This week I made DD a tactile box with rice and spoons and rocks and shells and beads and feathers. She can practice scooping and filling cups.

With colds, she likes to take the Kleenex and pull them out so I get a box and she gets a box. (ETA: I know most people don't worry so much about colds, but for an asthmatic they are a problem and it's illness that flares my asthma.).

I find it's important to have an arsenal on hand. Sometimes DD does well if I am sick, sometimes not. Fortunately, I have not yet been seriously ill in her lifetime. For some reason, I got the stomach flu but no one else did and I was just down for the count. I really was in a fog of flu, really out of it. All I could do was hug DD when she wanted attention,but she did well with that.

My biggest issue at the moment is muscle pain, a legacy form my reaction to steroids. My forearms are a mess and I think I have tendinitis now in the elbows from caring for DD. I need to look into braces or some other support.

V

[coop_mom]

sharon, sorry you're feeling crappy, and hope you feel better soon!

foodymama, I have to admit that I do more TV than I would like...but with being ill, sometimes I'm just not up to supervising a 2-1/2 year old at play, especially if he's being clingy...I don't like it, but we just do the best we can

I'm finally feeling a little better, I had such a blah month, feeling crappy and zero energy

lots of stress going on, too...dh and I have our own natural parenting shop in NJ, and we finally decided to close it...between the disasterous economy, my illness, and raising a 2-1/2 year old, we just decided it was too much stress and not worth it...but closing the store itself adds stress, I'll be glad when it's all over (March 28th can't come soon enough -- man is it hard to have to explain to every disappointed customer who comes in why we're closing (I suppose I don't *have* to explain, but I have a big mouth

hope everyone is hanging in there! I'm happy spring is here, though it makes me sad, too, because one of the features of lupus is sun sensitivity so I can't play outside as much as I would want

[William's Mom]

Yay! I'm happy to be here! Well, not happy to be sick... but happy to have found this tribe. I've been looking for it, and Kristen pointed me in the right direction! (Thanks Kristen!)

Here is what I had posted this morning on the old thread. Glad to have found the new one!

----

Originally Posted by William's Mom

Is this tribe still active? I've been looking for you all! I'd still like to keep in touch.

Is there a new chronically ill tribe thread that we're posting on? I posted a question in "Finding Your Tribe" this morning, before I found this old thread!

How is everyone? I'd love to hear updates...

I'm still very sick, fighting the chronic nausea and pain of the pancreatitis and SOD. Also still trying to figure out what's up with my bilaterally abnormal mammogram, and I have a follow-up for that in a couple of weeks. Also still dealing with the endometriosis, ovarian cysts, and pelvic pain. I had another surgery this past January to address that. Jury is still out on whether it was successful. And lastly, still have the asthma and blood disorder issues. Fun, fun.

So in spite of all the medical issues, I'm still trying to live as natural a life as I can. To keep my mind off things, my ds and I are planning what kind of garden we'll be raising. Also in the fall, we plan to start homeschooling kindergarten, even though I work outside the home part time. I have an excellent support system set up, though. So even though I'm stretched in a lot of different directions, I refuse to let these sicknesses rule my life. I'm doing what I can, day by day.

Sending and : to everyone.

[SevenVeils]

Originally Posted by Amylcd

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!

Amy, I have this too. Mine is autoimmune, but I only developed it about 3.5 years ago. PM me if you would like to, I might forget to come back to this thread as I am apparently a creature of habit lately.