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sickie mamas tribe (parenting with a chronic illness) - Page 8

post #141 of 179
Hi Kristin! I'm so sorry you are having to decide about taking more intensive drugs. I hope they are able to help you though.


I'm pushing through the holiday madness... it's crazy how much I still have to get done... I'm sort of fuzzy and swollen, but nothing I can't push through yet... my saving grace is my work shuts down between Christmas and New Year's, so I will have plenty of time to rest up which I will need.

So it's going... Hope everyone else is able to have a peaceful restful enough holiday!
post #142 of 179
Hi. I just saw this thread and while I hadn't previously thought of myself as a "sickie" I guess maybe I belong here as well. My mom used to use the term as kind of an insult to try to get me to be more energetic. I think I just need to gripe a bit. It's long and whiny, so if you don't make it to the bottom, I understand.

I just turned 39 and I seem to have an accumulative thing going on healthwise. I juggle respiratory allergies/asthma, OCD, panic disorder, depression, SPD, hypoglycemia, Hashimoto's (an auto-immune thyroid disease), and chronic iron deficiency (from very painful, super heavy periods). And now I have been feeling dizzy for the past week.

I am tired of being low-energy and sluggish. And I am seriously tired of everyone saying it's all just stress. I remember feeling peppy and energetic one specific day of my life, which is probably why I find naturally perky people annoying.

I have one child, a DD who is 6-1/2. We quit trying for another after I had pneumonia and realized that I don't think I could handle another one. DD's amazing, smart, and wonderful, but very intense and has frequent pee accidents still (which the urologist says she'll grow out of but she also has some phobic tendencies regarding public toilets). The past few weeks DD has been having severe anxiety. I feel guilty that I probably passed this on to her since it's genetically based, and I am also wondering if I am seeing some OCD signs in her or if I'm just being paranoid. It's also causing all of our sleep to be disrupted which makes it harder for me to keep the depression and OCD stuff in check.

My ND figured the current dizziness was just from low iron, but I knew it wasn't. It felt different. I'm a little bit scared about this, though my mom had benign chronic dizzy spells for years. But mine isn't going away, just lessening a bit. My ears feel plugged even though the ND could not see any fluid at my exam - she may refer me to an ENT. Part of my nervousness is about the scary "what-ifs" and the other worry is about health insurance. My deductible is high and will restart on Jan. 1st.

DH's little start-up company was on group insurance until 2 years ago when they got priced out. Now we get a stipend for premiums on private insurance (no dental or vision). However, we all had to fill out a questionnaire when we applied. I didn't think I had any big illnesses. I was just getting off Zoloft and seeing an ND so I wasn't using a bunch of prescription drugs or anything.

They use a point system to determine eligibility and they dinged me for everything - depression and anxiety were counted seperately, my wrist surgery for an accident got me about a 100 pts., I got zapped for having heavy periods, low thyroid, anemia, etc, etc. They rejected me. After I'd been previously covered on insurance for 8 years straight, they rejected me. I felt completely dehumanized. Like I somehow wasn't worth keeping alive or something - and I didn't even feel like I had a major illness!

I ended up on an insurance connected somehow to the state (subsidized, I think) and had a $500 deductible. That was OK. But it cost $400/month and I didn't even make the deductible. The following year, they raised their prices. I would've have to pay $600 per month just for my premiums alone, never mind DD and DH's. So I switched to a $2500 deductible for about half the monthly price.

That year was bad for me. My allergies and asthma got out of control. I got the flu and ended up at the ER. (This was after DD was sick on and off for 6 weeks including an ER visit for her.) We have been remodeling our house and the dust of remodeling set off my lungs in a bad way.

Now we have removed all the carpet from our home, but I am still having allergy troubles. We have two dogs and have to really keep up with the hair or I react. I'm allergic to our freakin' couch. It's very old and full of dust mites, never mind the dog hair. I am taking allergy shots for this but they take 18 months to become effective. In the meantime, I get shots twice a week. These are very expensive. So is my asthma medicine.

My insurance people suggested I could switch to private insurance because the state rewrote the questionnaire. I think I might pass and be able to get on it, but there would be a 9 month waiting period for anything pre-existing, including drugs. Great. I am also worried that if I got pneumonia, they wouldn't cover it because it would be related to the asthma. I've pretty much decided to keep my current coverage and see if DD and DH can switch to a cheaper policy instead. We're turning 40 this year and the rates go up a lot.

We're having some finance problems, partly because of the medical stuff. Sometimes I think I should go back to work, but I don't know if I could. I would have to retrain to get a decent-paying job. I can't even wait tables as a stand-by now due to the wrist injury. I am feeling very frustrated and stuck right now.

I feel like our house never gets clean enough for my allergies to clear up. If I clean, I have to wear a dust mask or I have am asthmatic reaction. (That's how I ended up at the ER last time.) I cannot visit any house that has a cat, so my social life has suffered due to my allergies/asthma for the past 3 years. (I ended up with pneumonia after cat allergies caused a bad cold to get stuck in my lungs.)

I have to wash all the bedding every week - even the comforters - or I start feeling heavy in my chest. DD pees her pants a lot and I can't get caught up on the laundry. And I seem to be the only one who will clean anything here. I've never been a good housekeeper (my OCD is more of the hand-washing/checking the locks and stove type), but now I feel like my health depends on having a dust-free house.

I have to stop beating myself up for not being able to "handle" everything on my own. I tend to compare my situation to others' and think that I must just be a wuss or something. My brother has terrible pain, bipolar and major disabilities and both my parents and brother have had major back problems and surgeries. I see how much pain they are in and how hard it is for them and I think that my problems are not that bad. What's wrong with me? I have only mild back pain (and I'm very motivated right now to keep it at that). I've never been hospitalized for mental illness. But I forget sometimes the advice I gave my dad when he was so worried about my brother's pain/problems while he was struggling with his own: Someone else's pain / experience does not diminish your own experience. Maybe I should take my own advice.

Thanks for reading.
post #143 of 179
Quote:
Originally Posted by Starflower View Post
Someone else's pain / experience does not diminish your own experience.
You have a lot going on, mama, and your pain is relevant. Try to be easy with yourself. Especially this time of year... it's just not easy for any of us.

I'm thinking of you...
post #144 of 179
I'm so sorry you are having such a hard time with all the insurance crap and other things, Starflower. I agree with PP, please try to be gentle with yourself... your plate is very full.
post #145 of 179
Thank you. I really needed a hug and some reassurance. This time of year is always hard for me. So many expectations (others and my own) that I am trying to let go.

It's good to have some company along this road. I am trying to remember to notice the good parts of things and trying not to get bogged down by obsessive thoughts.

Dr's office just called back. I can get in today to hopefully find out more answers about this dizziness.

I wish for all the mamas on this thread to find some peace amid their struggles.
post #146 of 179
I'm still working through the thread but wanted to say hi. I have bipolar disorder and am looking into adrenal fatigue. Something else definitely is going on, but I'm not sure what. My BP is pretty sever, and despite all types of med cocktails and herbal treatments, I've never been particularly stable.
post #147 of 179
Hi, Brandi

I'm new on this thread but I wanted to say hi to you. My brother has severe bipolar and it's been really tough for him as well. I hope you are able to sort out whatever else is going on.

I have been to the ND a couple of times for the dizziness that started up last month and it looks like it's probably just the ear crystals thing. It seems to have gone mostly away after a couple of eplay treatments, the last one I did myself. I did have one dizzy thing happen a couple of days ago, but it only lasted a couple seconds. If it starts to get bad again, I'll go back to the doc.

I have been struggling with depression lately. Some OCD and mild panic as well. Nothing new for me, but I thought I had it under control and apparently I did not. I have been under major stress lately though. (I think my grandfather is dying and I have been in contact with my mom a lot lately.)

I have been feeling stuck inside myself a lot lately, like I'm trapped within myself. It's bizarre. Also not a new feeling, but it scares me a bit because I felt that way during college for a while right around the time that everything got crazy for me with the depression/panic/OCD stuff. I find it very difficult to be a good parent or partner when I am like this.

I think I will ask DH to assign me tasks or something so I will just have to do something. Otherwise, I feel like I'm sinking into myself and just watching it happen.

I also started taking Quasense birth control pills, which are supposed to make me only have 4 periods/year. ND wants to control my anemia. I started taking them mid-cycle and now I'm spotting/feeling PMS-ish, though the first 3 days I took them I more energy than I had in a long time. I had begun feeling somewhat depressed before Christmas when I was not on the BCPs, so I don't think they are contributing to the depression stuff though I will be watchful of that as a possibility.

I hope the new year brings good things and blessings to all the mamas on here.
post #148 of 179
Starflower, if you have decided against more children, have you considered getting your tubes done and having the novasure procedure. It zaps your endometrium and reduces/stops blood loss. I haven't bled since I had mine done nearly a year ago. Its wonderful.

http://www.novasure.com/
post #149 of 179
i have adenomyosis, which causes me INTENSE periods, last one was 2 months of constant clots, waking in puddles of blood, severe cramping.. it HURTS, and is horrible for my anemia. i was presented with two options, to have a hysterectomy, or to try the Mirena IUD. so i had the Mirena inserted. it has been a month and a half. with light spotting on and off, as to be expected, but i no longer have INTENSE cramping, hell i dont have any cramping. and my flow is super light, not heavy at all.
Mirena saved my uterus. and my anemia. if the bcp are not working for you, and are making you ill, ask about the mirena
post #150 of 179
so, my own issue:
my bipolar has been SUCKY lately. lots of cycling. thanks to no insurance, so no meds. : but my mom has said she wants to pay for meds for me. two months later.... *sigh* so maybe i can feel more stable on that front.
my fibro is KILLING me. most days i wake up crying in pain, need a vicodin before i even get out of bed. which is hard when i cant afford them and have to get some from my mom. my mobility is suffering, and being in the "pain body" really sucks for my relationships with people, cause i am cranky.
in August i had surgery to remove a cyst on my pancreas. it was thankfully non cancerous. but was considered pre-cancerous due to the type of cyst it was. so every little twinge of pain in that area has me freaked. it took a long time to heal. i had some infections at the site of my drain tube. and i had that in for almost 2 months. a few visits to the ER for pain management and infections.. no fun at all.
but again, i cant go in and see my surgeon for another followup because, NO INSURANCE.
but, life goes on, and i can choose to let this all get me down, or i can choose to rise above. today i make the choice to rise.
post #151 of 179
Quote:
Originally Posted by tireesix View Post
Starflower, if you have decided against more children, have you considered getting your tubes done and having the novasure procedure. It zaps your endometrium and reduces/stops blood loss. I haven't bled since I had mine done nearly a year ago. Its wonderful.

http://www.novasure.com/
I do not want more children, but I have been hesitant to do a tubal because I was afraid of ending with tubal ligation syndrome and making everything worse.

I considered the Mirena IUD but I was also worried about bad side effects from that on top of insertion and then having to get it removed. For now, I guess I'll see how the pills go since I feel like I have more control over that. If they don't work, at least I can easily stop taking them and then check into the Mirena or the tubal/ablation.

SleepyMamaBear - Having no insurance sucks. Glad to hear the pancreatic cyst was non-cancerous though. I hope your fibro pain eases up soon and gives you a break.
post #152 of 179
Hello everyone. I think that I have posted here (or somewhere!) before, but I will reintroduce myself.

I'm Tricia, I have type 1 diabetes and hypothyroid. Some days I feel fine, some days it seems like I spend all day managing things.

Greetings!
post #153 of 179
I'm a long-time "sickie," basically since birth. I was back in the hospital two days after my birth, pneumonia for the first time at five WEEKS, friggin' Scarlet Fever at seven, etc.. I became very ill at eleven with recurrent viruses and was eventually the doctors' found mono in my blood work that continued to show up for three years. I was put on antibiotics - the doctor's never making the connection that the reason they didn't help is that I was ALLERGIC to them - so many times that my teeth literally rotted away, eventually requiring over $10,000 worth of (very painful) dental reconstruction surgery.

I went on, because people told me that's what I HAD to do, despite knowing in my bones that there was something seriously wrong.

I was diagnosed with Multiple Scerloris at the age of 16, because of rather . . . unusual circumstances. I was involved in a car accident that consisted entirely of my little Toyota Corrolla and an 18-wheeler who's driver hadn't slept in three days but had found time to throw back a couple pitchers of beer.

The doctor's in the emergency room found the lesions on MRI scans while looking for brain swelling from the accident. What a nice surprise, when waking up in the ICU, right?

In addition to the MS - as if that's not enough - I also have asthma, severe allergies to nearly everything, endometriosis, fibromyalgia, manic depression, anxiety disorder, and high blood pressure.

Whew! If anyone made it through that, I commend you. Excuse me, while I go cry into my pillow.

But before I do, I just want to extend my sympathy and good vibes to other mamas who live in similar situations. It's hard being a parent in the first place, let alone with a chronic illness. I think you're all amazing.
post #154 of 179
Quote:
Originally Posted by Starflower View Post
I do not want more children, but I have been hesitant to do a tubal because I was afraid of ending with tubal ligation syndrome and making everything worse.

I considered the Mirena IUD but I was also worried about bad side effects from that on top of insertion and then having to get it removed. For now, I guess I'll see how the pills go since I feel like I have more control over that. If they don't work, at least I can easily stop taking them and then check into the Mirena or the tubal/ablation.

SleepyMamaBear - Having no insurance sucks. Glad to hear the pancreatic cyst was non-cancerous though. I hope your fibro pain eases up soon and gives you a break.
You could have the novasure done without having the tubal.

Obviously, its best to do what you want to do but having the info is handy just in case things aren't working out.

So, hopefully, you will find something that works and I will keep my fingers crossed for you!
post #155 of 179
widemouthfrog and luckysgirl


Quote:
Originally Posted by tireesix View Post
You could have the novasure done without having the tubal.

Obviously, its best to do what you want to do but having the info is handy just in case things aren't working out.

So, hopefully, you will find something that works and I will keep my fingers crossed for you!
tireesix - this past Saturday I was about ready to ask for a hysterectomy.

I started the new pills. Had some spotting instead of a period. good. Then week 5 hit and wham! bleeding like crazy. I actually paged the doctor on Sunday. Got in today. She's trying to work with me herbally for now (ND) on getting the bleeding under control. Then she sent me to the lab for iron tests because I'm so tired. The phlebotomist stuck me 4 times in 3 different places, including one of my hands trying to get the blood for the test. She finally gave up and sent me on to another lab because the ND wanted the results stat. The other lab was able to get the blood, but by that time my arm had been poked 3 times in the same place and was pretty sore. Yeesh! And I'd just gotten over the reaction to last week's allergy shot from hell.

Grumble. I am in a bit of a weird space over here, too. I've decided to cut down on my volunteering at our church. I want to for my sanity and so I can focus on what makes me feel alive. But now I feel like it's necessary. I don't have much energy and DD is having a lot of anxiety now so we're dealing with that on top of my weird health equation. But I am on the board at church. I am supposed to be on for 2 more years after this. So I am trying to figure out how to tell the president that I am quitting. (I'm secretary so it won't go unnoticed by the congregation either.)

I want to say health reasons, but I'm one of those "don't look sick" people. Some days I am OK and cope well with life, the other half of the time, everything is a struggle. I don't really want to tell the entire congregation that I have OCD, depression and panic disorder. I don't want it used against me (even though it shouldn't matter). I also don't want to have everyone think I am just a cop-out. I will probably have to write a blurb about my decision for our newsletter.

But after this week, I realized that I really DO need to drop this from my life. It causes way more stress than I need. I get all OCD about everything so my work takes much longer than it should. I guess I feel kind of guilty about wanting to leave because it's kind of a sensitive time right now, but I barely feel like I have enough energy to deal with just my family life.

I am just going to tell people I have some chronic health issues and I no longer feel like I can do the job to the best of my ability. That would be true and not getting into any details I don't wish to share.

Any other suggestions?
post #156 of 179
I gave my notice to the board. I am dropping various activities and have been rather sad lately. I think I am grieving my losses, even the ones I kind of wanted out of anyway. I guess just being forced to make the choice has been hard, plus there were things I'd been looking forward to doing that I had to drop as well. Bleah.

Still bleeding. Off the BCPs and now on provera just to try to stop the bleeding, but took the last of it tonight and I'm still a mess. Will call the ND Monday if bleeding is not gone. I have an appt. for a vaginal ultrasound on Wednesday.

Hope to know more soon. Trying to stay positive.
post #157 of 179
Starflower....
post #158 of 179
I just read the whole thread, which I should not have started after midnight. lol So, just want to give you all big hugs and introduce myself.

I have type I diabetes and I'm feeling a little low about it bc my six year old cried the other night when my blood sugar got low enough that I became incoherent and unable to really understand what was going on. I think it was the first time that he was really feeling scared about my health. I'm also scared -- and I have no idea if this is a logical or realistic fear -- that my lows are going to effect my mind in a permanent way or that I will become increasingly out of touch with reality while they're happening. It seemed like there was very little to no losing touch with reality during lows 10 years ago and now there is, so I'm worried it will continue to get worse. That's the first time I've said that out loud! Sigh...
post #159 of 179
Thanks, SeekingSerenity. Hugs are good. I've been very emotional lately. Coming to terms with having to set limits I didn't want. Guess it's part of the territory.

rubidoux - That must have been scary for you and your kiddo. I hope things get evened out for you soon and your diabetes doesn't get any worse. You sound understandably worried and stressed. Hang in there.

I have a 6 year old too. I think she's starting to get worried about me lately because I've been so cranky and tired and not myself. She has anxiety and just started therapy. I am trying not to add to her worry her and anxiety, but it's hard to deal with her issues while having my own.

Update: Bleeding much less now. Finally! And I'm getting a pelvic ultrasound tomorrow. Hopefully, I'll get some answers to at least part of this puzzle soon. Thanks for all the info and suggestions, everyone.
post #160 of 179
Hi rubidoux, I have type 1 as well.

I think that as you get less physically aware of lows, your mental symptoms tend to become more prominent - at least that is how it is with me. Lucikly (?), I tend to go into shock, stop being able to move, lose control of bodily functions before my brain stops working. Yay me.

Have you heard of Blood Glucose Awareness Training? If you're in the US I would look into it - training your mind to recognize the cognitive symptoms of lows.

I'm now dealing with minor panic attacks induced by low bgs combined by stress, so that's my fun thing.
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