sickie mamas tribe (parenting with a chronic illness) - Page 9

[Starflower]

widemouthfrog - I'm sorry to hear you're dealing with panic attacks. They suck! BTDT. I hope you find something to help you deal with the stress and anxiety.

I feel like I'm on the merry-go-round of going to docs lately. Today was the allergist. At least things seem to progressing normally with the immunotherapy.

Last week I did had a pelvic ultrasound. Results came back as fibroid. Not surprising given my symptoms, though if it's only one almond-sized one, it must be in a prime location to cause so much trouble. My ND is referring me to an OBGYN clinic to see what my options are since she said naturopathic methods don't have the best results with symptomatic fibroids. So this could be fun. But also, it could take care of a lot of stress and discomfort and the anemia.

My kiddo is still having anxiety and no longer wants to go to school. She went today but I don't know how much longer she will go. It's a private SVS styled school and she just needs more support than they can offer. Not a good fit for her. Looks like we'll be going back to homeschooling for next year, possibly even before summer if things continue they way they are going. (We unschool so we don't have "official" start times or make any differentiations as to school vs. not school time.)

So now I am trying to figure out how to homeschool and how to parent while barely functioning myself. Hopefully, over the next few months some of these issues can be resolved, but for now, I haven't exactly been the parent I want to be. DH is being very supportive. Sometimes I wish we had family out here, but they're usually a PITA anyway, so it's probably just as well.

I hope everyone is doing better. s for anyone who needs one.

[Starflower]

I didn't want to post on a new thread, but I had to say something somewhere.

I'm a little scared about going to the doctor tomorrow. I'm seeing a new gynocologist to find out what my options are for dealing with a fibroid that seems to be causing me troubles. I have some difficulty believing one small fibroid could cause all my menstrual problems so I guess I'll discuss that with him too.

[Beth F]

Originally Posted by Starflower

I didn't want to post on a new thread, but I had to say something somewhere.

I'm a little scared about going to the doctor tomorrow. I'm seeing a new gynocologist to find out what my options are for dealing with a fibroid that seems to be causing me troubles. I have some difficulty believing one small fibroid could cause all my menstrual problems so I guess I'll discuss that with him too.

Hope that all went well with your visit. I've had fibroids (removed surgically) in the past. At the time, I didn't know about estrogen dominance but lately I've been reading about it and wondering if that's what's causing some of my menstrual difficulties and what may have caused my fibroids.

[rachelernst]

If you want to read a primer on estrogen dominance read Hormones Health and Happiness. I'm going to see a doc using bioidentical hormones for my allergies and bc my cycle has gotten erratic. I have a non-natural living friend who has a cyst (on ovaries?) and her gyncoc Rx'd The Pill for a short time to shrink it. I wonder if the same effect should be able to happen with bioidentical rather than artificial hormones.

[Starflower]

Well, the gyno said that the fibroid was too small and is in the muscle part of the uterus so it should not be causing the problems. I would've thought my ND would've figured that out when she got the results. If she'd told me the type of fibroid it was, I would've known that too. I don't know if I should ask her more questions about hormonal imbalances or just go to a new one around here that specialized in it.

The gyno recommends either using a Mirena IUD (same thing my ND suggested a few months ago, but I have some reservations about it) or considering an ablation.

I am not making any decisions at this point. I am frustrated with my ND at this point. I am very picky about doctors and not thrilled with her lately but I am tired of shopping for new docs/NDs.

I am also losing patience with this issue and I don't want to have a solution which involves a bunch more expensive horse-pill-sized supplements. I'm not sure at this point if I should try to find a different ND, try the Mirena and hope it helps, or just do the ablation and be over with all of it. Sigh.

So more research to do, I guess. Maybe I'll post something in health and healing to see if there are others with this type of problem. Thanks for the replies.

[heidirk]

de-lurking momentarily-

I am really hurting today. This stinks.

[Starflower]

heidirk I'm sorry you are hurting today.

[clairelamar]

hi everyone,

i admit i haven't read all 9 pages of this thread! i am a 28 year old mama of a 9 month old who has chronic pain. i coedit a zine called "when language runs dry", a zine for people with chronic pain and their allies. i am doing research for an article about parenting with chronic pain. if anyone can recommend any fave books, blogs, articles etc on this topic i would love to hear them!

thanks

[earthmama369]

Still reading through the thread, but thought I'd post an official "hello." The rheumatologist confirmed what the neurologist told me a couple weeks ago. They're pretty sure I have fibromyalgia. I have the classic profile: TMJ, IBS, heinous menstrual cycles, 16 trigger points, unusual muscle pain, trouble sleeping (and the resultant fatigue), headaches.... The rheumatologist is concerned that I may have some kind of metabolic myalgia, as well, so we're doing a 6-week trial of Neurontin to see how I respond, and if I have muscle pain after I get the sleep component worked out, I'll go in for a muscle biopsy. After the endoscopy, colonscopy, 47 vials of blood, MRI, and nerve conduction testing I had done all last month, what's another test, right?

I generally steer clear of meds. Any experiences with Neurontin? I'm feeling a little nervous about this one. It seems like it has a lot of possible side effects, and some of them are pretty scary.

[Starflower]

Hi, earthmama369 - I just wanted to post to say hi, give you a and to bump this thread. I hope you find some hopeful answers. I don't have any useful information for you.

[heidirk]

and a few other things...

Starflower- thank you for your hugs.


earthmama- did you try the Neurontin? How did things go?



AAM- I started taking a massive daily dose of Vitamin D- and trying to get some sun. I have to be careful with that because my Psoriasis is agravated by sunburn. I am doing better! I have had far less pain lately. I have also started barefooting hardcore- and my foot realigned itself! Shortly after that my knee realigned itself!

I talked it over with my Chiropractor- and he said my tendons pop out of the grooves they are supposed to lie in, and then rub over the bone That's what hurts(duh) and why that joint swells and is unstable- until it heals enough to pop back into place. Thank you EDS!

[tireesix]

Neurontin, thats gabapentin right?

I can't reccomend it because I react to it, I have one of those other crappy fibro symptoms, the 'react to all meds' symptom. I can tolerate some pain killers but gabapentin, pregabalin and anti depressants all make me suicidal, can't even tolerate caffeine now, I am stuck with oxycodone, tramadol (which is one of the preferred pain killers for fibro) and sleeping tablets. Oh, and I am trialling lignocaine infusions every 10 weeks but I am still at a really low dose so not feeling any effects yet (besides, thanks to the EDS I don't respond well to local anaesthetics anyway ).

From what I have read and trialled and been told, Pregabalin is preferred over gabapentin, duloxetine to go with the pregabalin as well. Mirapexin is supposed to be good BUT I gained 2 stone on it and wasn't on it for long (under a month).

[tireesix]

OK, so all my messages recently are grim and really I am not a grim person.

Gabapentin - my DH used it, found it to be really useful (he has impinged nerves in both shoulders plus nerve damage in his back, while he was using it he was in less pain and seemed to function better).

For me, already told you about that but for other people with fibro, those who tolerate it (I know a lot of fibro folk have issues with tolerating meds) do say that it works well (all they most of them are not being moved onto the pregabalin which I believe is more effective in that it takes less to do the same job?????).

There is something else I am trying to get my hands on (though lord knows why because I have reacted to so many things that its a wonder I don't just give up lol) called tizanidine, true muscle relaxant that also helps with stage 4 sleep. My pain management doc says that that would be scraping the bottom of the barrel but agrees that I am pretty close to the bottom of the barrel anyway (also, because of my EDS 3, they aren't sure about making my muscles more relaxed than they already are, I already suffer dislocations).

Accupan (nefopam hydrochloride), supposed to be good in the long term, I can't tolerate it, it affects the dopamine, seretonin etc and if taken regularly over the long term is supposed to help with sleep, nausea, IBS and pain associated with fibro. I just found it knocked me out.

Mirapexin, dopamine agonist I think, usually used for RLS and parkinsons, some people find this REALLY good but its hard to get your hands on for fibro. Again, I couldn't tolerate it, well I could, but there was the weight gain and with the EDS and PCOS, I simply cannot afford to gain weight, especially as my knees started dislocating this year.

Thinking...............

Can't think of much else. Tramadol I find REALLY helpful and whats more, I tolerate it! MST (morphine tablets) I didn't find very useful but Oxycodone I find better and then I use oramorph for extreme pain (ie dislocations etc). I use paracetamol and ibuprofen on top of that (for headaches and also because of the WHO pain relief ladder thingy.

Buprenorphine patches I found where fantastic BUT (and a few people ie my husband and a couple of friends) have found that after about 18 months, they started reacting to the patches (it was pretty gruesome really, after a couple of days my skin would be so blistered the patch would fall of with all this skin and fluid, ew). I am gutted because was the best thing I ever found for my fibro pain.............

I also use sleeping tablets as necessary, Zolpidem was ok for light relief but I find that Zopiclone works better, and whats more, sometimes the only thing that will touch my back pain is a sleeping tablet, I figure it must be because it relaxes me????? I don't know, it works though.

Once the Lignocaine infusions have an effect (fingers crossed) I will let you know about that. With the infusions, you are stuck as a day patient/in patient (depending on the amount and how they do it), you have to be monitored throughout. The lignocaine is fed directly into the blood stream by a pump. My first one took about half an hour but they had to do a heart trace, blood pressure etc before hand and then I had to wait afterwoulds for half an hour before they let me home. Apparently, the next one will be longer and for the moment, they said it will be every 10 weeks but it all depends on how well it works, if it works and whether I suffer any side effects as the dose increases...........

HTHs

[Starflower]

Update: I got my Mirena IUD put in this morning. I'm hoping it will alleviate the super heavy periods and the resulting chronic anemia. I'm hoping to get some results before the insurance deductible resets in January. (It takes 3-6 months to start working for blood loss - bonus is birth control after two weeks placement.) If this doesn't work, I'm looking at ablation & tubal or a hysterectomy. I would've done the ablation already but the doctor thought due to my age I may need more than one (apparently they don't last forever if you are not close to menopause) and she thought the IUD would be better for pain. I decided not to investigate for endo at this time but if I end up with a surgical procedure later on, we will do that then.

In any case, I finally feel like I found a GYN that I can trust. She gives me all the time in the world to decide and I can ask a million questions. She doesn't belittle my anxieties. She is very straight forward. I am so relieved to have found her.

I had a couple days last week with really bad depression but it was only a couple days. My DD (7 years) is going through a lot of anxiety and depression right now. We are seeing a therapist for her and I have also started seeing her on my own. I've been very stressed out so the OCD is bugging me a little bit but still seems to be mostly under control. I am noticing it but so far not starting to do rituals.

My wrist is better but not great. Gets swollen and painful at times. I now have a large doctor bill to pay but no answers other than we could try a cortisone shot. I declined and have been icing instead when it bugs me. Mostly it's OK. MRI showed nothing new other than the bones are close together. Can't do anything about that. I am trying to be good and not do any heavy duty stuff with my left wrist. That seems to be the key for that.

ND says my thyroids are OK right now. yay!

[marinak1977]

another newbie to the thread

Hi Everyone, I'd like to join in. I am doing fairly well currently, although I have hypothyroidism, IBS (undiagnosed officially), and probably mild adrenal fatique (as diagnosed by my nutritionist). I am on synthroid for the hypothyroidism my IBS is unmedicated, but it does not flare up when I can manage my stress levels, however, I still end up with very painful cramps at least a few times a month. With my new job and a baby I've had digestive issues almost every other day for the last couple of month. I'm finally beginning to get it under control. My hypothyroidism is weird such that when I have a flare up I end up with dull pain in my joints - especially my wrists and feet, although it sometimes goes up to knees and elbows as well. This is an unusual symptom and I was tested for RA because of it (I'm negative for RF, although my ANAs are borderline) but it really seems to be related to when my T4 levels drop.
My current goal is to straighten up my nutrition again (I try to eat little processed food, refined flour/sugar, and take out) which went out the window after DS was born, and to work on helping my adrenal glands. Anyway, I'm looking forward to getting to know all the strong mamas here, and maybe learn something.

[MaryJaneLouise]

Hi, everyone, long time no see.  I've been having a bummer of a summer.  I'm on the chemo-for-life program, due to metastatic cancer.  My DH is very unsupportive and untrusting of me, and really undermines any attempt of mine to spend as much time with my kids as possible, quality or not.  He has even insisted that they go to a summer day camp / child care every day this summer while they are out of school.  I know it's probably a good idea on some days when I am very low energy, but other days I feel good and he still insists that I take them in, no matter what.  It's just so frustrating.

[mandalamama]

born with GERD, severe allergies and asthma. i've been disabled since '95 with chronic fatigue syndrome, fibromyalgia and early-onset degenerative osteoarthritis plus hypothyroid and allergic asthma. i've had PCOS, IBS sciatica and IC all that time, as well. i was diagnosed with lupus 2 years ago, so far it's a low positive and no medication yet. i've had to use a rollator (rolling walker with a seat) since i was pregnant with my 6-yr-old, i had SPD during that pregnancy and the hip and back pain and weakness just never went away. now the diagnosis is "degenerative disk disease" with herniated disks and 3 bone spurs at L4-L5. for the past few years i've had to use the electric carts in big stores more and more, we make a joke of it and my daughter loves beeping the "horn." right now i'm in the middle of a natural miscarriage (12 weeks), i'm so dang T-I-R-E-D and of course summer is just starting. i have had anemia since last year.

this might sound weird, but i never feel "sick" unless i have a cold or flu or something like that. i think it's because i've always been sick/sickly since birth, so it's all just my "normal" and i don't get upset about it anymore. i started doing yoga when i was 17 and it has really, really worked for me so well. i also started meditating and doing deep abdominal breathing at the same time, that and the yoga has come in SO handy for chronic pain control, for avoiding the effects of stress as much as possible. naps are also a wonderful thing :) if i'm stuck in bed  i have a ton of fun stuff for my daughter to do, we play cards, board games, word games, we read, color, draw, have picnics in bed, have puppet shows, play with dolls, all that fun stuff. it's to the point now if i'm having a great day she's like, "mama, don't you need a nap yet?!" *grins*

the thing that's worked for me best is warm (93 degrees) pool physical therapy, i was lucky to have it available where i used to live and it was incredible for keeping me more mobile and in less pain. oh, i miss floating in that warm water! it felt so good to walk in, too. the hospital here has a tiny warm pool, no room to walk, and the entrance to the PT center is, ridiculously, so far from the parking lot that by the time i'm done with PT and get to the car, i've undone all the work and have added even more pain and weakness. duh!!

i've been blessed to learn so much "adaptive parenting" from disabled parenting groups and here at MDC. a lot of it is pure intuition, though. a Marine once told me to "improvise, adapt, overcome!" i love that motto! i've kept a supportive circle of people who help me parent (i'm single and alone) and also take advantage of all the local resources for my girl. one thing i notice about her is that she's not deprived but she is much more compassionate than her peers. nice to meet y'all, sorry for the reasons we are meeting.

[Starflower]

Hi and hugs to the mamas who've posted since my last post. I see that this thread isn't very active.

I was finally feeling pretty good. Allergy shots were starting to work (finally - after 18 months). The IUD has made my anemia go away but it's almost been a year now and I still drain something more often than having days with no protection. I can plan to do activities without going around my period, but it just seems like a long, slow-flowing version that never really ends. I hope to follow up with the OB-GYN in a month or so.

BUT - after having some odd olfactory sensations of smelling phantom smells (usually cigarette smoke that wasn't actually there) and then having a week long headache on the left side of my head which wouldn't go away no matter what I took, I ended up at my ND's office and then in a CT machine. They found a lesion on the left sphenoid bone between my eye and my brain. They ordered an MRI for clarification but that just determined I needed a biopsy. Eventually I ended up with surgical biopsy with a brain surgeon. April 22nd, they took out most of the lesion, with primary reports showing benign activity. They left part of it believing they could zap it with radiation once it was truly identified. Except that they could not positively identify it. They even sent everything to the Mayo Clinic and they were not able to ID it either. It came back "negative" for every test. Recovering from brain surgery is not an easy thing. My mom came out to help us and stayed 3 weeks. At about 4-5 weeks post-op, I went into a depression and so did my DD. It was horrible at times. We elected to put off going back in for another surgery to get the rest of the lesion for testing purposes.

I was in limbo for several weeks during all this time, expecting answers and never having them come. I finally got used to it, until it was time to schedule my follow up scans. Making my appt for the new scans spiked my anxiety. Plus my headaches had come back and my vision started to be affected. My DH preferred to think that things would be fine on my next scan, but I knew they would not be OK. The scans showed that the lesion had grown back into most of the area where they'd removed it (though this time it was not pushing on my brain). It had also grown larger near my eye orbit, pushing my eye muscles around to the point that it was making it painful to focus at times and I was beginning to have auras similar to migraine auras, especially in response to light changes. This showed that whatever it was - we still don't know at this point -- was aggressive. I underwent a second craniotomy to completely remove the lesion July 21st. My mom came out again for two weeks. Yesterday was my first day on my own and I was so dizzy I asked a friend to come by and hang out with me and DD in case something bad happened while I awaited a call back from the nurse. The dizziness was probably a reaction to inflammation near my brain which can affect several things (including nausea which I've also been having). I do not feel dizzy today.

I am still on pain meds and trying to navigate the meds I need to stay semi-functional (emphasis on semi) and the side effects of the medications. After my first surgery I had terrible short term memory loss (kind of like new baby brain when you don't sleep for months) but this second time around it's been much better. I think it's because they did not put me on steroids in the hospital this time since the brain was less involved than the eye. (In both surgeries they did NOT have to open the cover to my brain, the dura.) I felt worse in the hospital this time, but my incision healed much better. (The first time, I threw up from the anesthesia and my incision bled resulting in more staples and delayed healing.) This time, I ended up with a UTI, but it went away easily enough with anti-biotics and lots of cranberry juice.

Now I have an appointment with my neurosurgeon for a follow-up on Thursday. She is pregnant and due any minute so I am just hoping she doesn't got into labor until after my appointment. :-P She told me while I was still in the hospital that the lesion was easily removed, even from the bone, that it was not attaching to any other tissues other than the bone, but they could only excise the bone area. Normally they take a 1 cm perimeter out to be sure of it being gone, but that 1 cm would've included part of my brain and my optic nerve so they left those alone. She said it looked non-malignant (thank you!) and they found some cells which looked different than last time, which may mean that the pathologists will be able to identify it. They still don't know if it's a tumor of some sort (probably/hopefully benign) or if it's an inflammatory/immuno process. I just hope they get some definitive answers this time which indicate it can be treated. I'm also hoping it doesn't include chemo which is one therapy on the table depending upon what it is.

Whatever it is, this condition is extremely unusual, given that it looks isolated (I've been scanned everywhere for cancer and also bone-scanned full body.) The location and everything about so far has been extremely odd and baffling for all the medical people. It's like one of those things that you read about some bizarre and obscure thing happening to someone far away that you've never met, only to find out that it's actually you. It's just surreal that way.

I've seen a couple different docs, including an ophthamologist plastic surgeon for possible reconstruction, but he determined reconstruction would not be necessary due to size and location of excision. Plus he said he was not qualified to reconstruct behind the eye, only in the facial area. He did test my eyes though said the eye is healthy. I am an artist so I am happy about this. I had been studying what it might mean to lose an eye to this thing.

For a while I was calling the thing (lesion/tumor/whatever it is) "Beyotch" after a friend suggested it. I often try to use humor to deal with this mess I'm in. After the first surgery, I read all the Harry Potter books so I had something else to talk about with my DD (8) to keep our minds of everything going on. This go around, I re-dubbed the thing-which-would-not-be-named "Voldemort" because it was reported to be gray, I am sure it is ugly, it's causing me great strife and is threatening my life - plus in the end of the book series Voldemort is finally killed even though he'd returned previously. The last HP movie came out the weekend before my second surgery, so DH and I went to see it the Tuesday before my surgery. I wanted to see it before surgery because I'd recently finished book 7 and we had watched the other films. I also wanted to see it in case my vision suffered more after the surgery.

While I did have double vision after the second surgery - worse than the first - it quickly became monocular vision when my left eye swelled completely shut and turned many beautiful sunset colors. After a few days, the swelling went down enough that my eye opend again. And I can now see better and focus better than before the surgery. I am keeping a blog so I don't have to keep repeating the info to everyone in my circles. And I often get comments of "death to Voldemort" in my guest book. Even the post-op hospital doctor didn't know what to call the whatever-was-removed, so I told him just to call it Voldemort. So maybe as long as I am not a Horcrux, I will be OK.

I hope so. My DD has been very scared and sad and having tons of anxiety. But this time, she is dealing with things in real time rather than stuffing everything and wigging out a month out. She has told me she is scared that I won't be around anymore. This is sad and scary to hear, but I am glad she is dealing with her feeling openly, especially after having a terrible existential depression last summer focused around death.

So it's been interesting (and so much more) dealing with all of this while still managing OCD/depression/panic disorder. My allergy shots are on hold and I will likely have to restart them because it's been so long since my last dose. If this is the case, I will ask them to add in horses to my mix. And I am frustrated that the IUD isn't providing quite what I wanted because according to my ND the only options left we haven't tried are both surgical. And frankly, I am tired of having surgery.

If you've read all of this, thank you for your patience.  I hope the other mamas here are getting some relief from their pains and getting better health as much as possible while we all struggle with our ailments while parenting the little people we love so much.

[Ravensong13]

Hi!  Another Fibro mom here. I was dx when I was 11, but I've been going through the 'is this really what I have' game the past few months. I was in the middle of being tested for Elhers Danlos syndrome when I got pregnant and just decided for the time being I don't really care, lol. 15 years of trying to figure out what is wrong with me is making me tired. I also have raynauds and some mystery intense itching in my legs that has been going on for four years. It's kind of like having my legs set on fire a couple of times a day. The doctors can't seem to figure that one out. All things considered I do pretty well though. I have just resigned myself to the fact that I will always feel tired or achy to some extent and I've stopped trying to let it dictate my life for me.