Parenting with Chronic Illness: One Mother’s Lessons Learned

After another beautiful mothering comment on a recent post, reading this was like balm to my battered heart. I am not alone.

Chronic Illness is a Journey

“We Are Not Alone and We Are Good Parents”

Parenting with Chronic Illness: One Mother's Lessons Learned

Five years ago, shortly after my second son was born, my life was thrown a curve ball. I woke up one morning to all over body pain, unable to walk. My hands were curled into fists. I was caught unprepared. While I had dealt with unexplained symptoms and pain for a number of years prior, I did not have a diagnosis and my symptoms had never been this severe.

In that morning, I went from being a young mother to being chronically ill. My pain and symptoms were so bad I could barely hold my newborn. I needed my mothering instincts to kick in and I could barely take care of myself. If not for my sister, those first months after my diagnosis would have been even harder.

Uncertain about My Parenting

Even though much time has passed, every now and…

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6 Comments Add yours

  1. Michelle says:

    i’m not sure what your current meds are, given that you stopped blogging for a year. however, if you are still on Percocet, i have some advice. our migraine conditions sound extremely similar, and i was once prescribed it for pain. one day i found out that oxycodone can be prescribed without the acetaminophen found in Percocet. (i am NOT referring to OxyContin, which is time-released. I’m talking about regular oxycodone the same as Percocet but without the tylenol in it.) because acetaminophen can cause major rebound issues, my doctor granted my request to get the non-Percocet tablets. even though i take it almost daily (on a schedule) i VERY rarely get rebound. i am watched more cloesly, both at the neuro office & the pharmacy, and have to agree to random drug tests to make sure i’m not selling it or something, but given that i know i will pass those tests, it doesn’t add any stress or anything. my neurologist had me sign a detailed contract, basically “these are my rules, take them or leave them,” and it has worked out well so far. just a thought!

    1. ladymigraine says:

      Michelle – the year I stopped blogging was one of the worst of my life. Commiting it to eternal digital memory would have felt like throwing up my worst emotional bile for the public’s view. Anyway your comment is super interesting because I only last month, after 30 years of being on one narcotic or another, asked about Oxycodone without acetominophen to help decrease rebound. What mg do you take? I found that rather than boosting me through my day the way Percocet does, they worked well but dragged me down and made me very sleepy. I was thinking they’d be perfect for a higher caliber headache when I need to sleep, like with DHE or something. I have an appt with my dr on Friday to discuss it (a new, wonderful one I haven’t blogged about yet either).

      1. Michelle says:

        Given the way it seems people are cracking down on treating migraine with strong painkillers, and the fact you’ve already had someone use your blog against you, i am not comfortable discussing specifics on here. however, i’d be MORE than happy to talk freely with you via email. you can reach me at: shortstuffA16 at aol dot com. (i made that email address as a teenager. kind of embarrassing, but everyone knows it so i haven’t switched to a more “grown up” email name. :-P) what i will say on here is that i didn’t notice any difference as far as how i felt (other than huge rebound improvement) so i’m not sure why you feel more sleepy but it could be the dosage. because in Percocet both ingredients are in a single tablet, maybe chemically it does something to it, i don’t know. but it’s certainly worth a try! it didn’t make my migraines improve, but if you’re like me, there’s a very distinct feeling of a rebound rather than regular migraine. for me the rebound ones are actually worse, and make me far more sick to my stomach. i used to get them all the time on Percocet, to the point i’d have to go on courses of Decadron to stop the cycle, and i’ve not had to do that a single time without the tylenol in it. for awhile i was allowed home Toradol IM injections, under the supervision of a Hopkins neurologist, but now the pharmacy says it’s a liability so i can’t get it. which sucks, because my anxiety about being okay for certain things went way down when i knew i could head it off. anyway, now for acute pain i mix the regular oxycodone with ibuprofen and, if needed, phenergan. ibuprofen CAN give you rebound, but it never has for me, only tylenol, so it’s not an issue in my personal situation. unfortunately, i tried Imitrex and had an anaphylactic reaction – if i hadn’t taken phenergan with it (which is an anti-histamine) they said i may not have recovered because i was half an hour from help. (phenergan isn’t what they’d usually use, obviously, but it helped enough.) anyway, that’s why all the “migraine-specific” pain meds aren’t an option for me, they’re all in the same family/class/whatever and if your throat closes with one, you can’t have the others. anyway, the oxycodone tablets are different strengths than the Percocet ones. as far as i know, Percocet is 5, 7.5, or 10, with one of two acetaminophen strengths added. oxycodone is (as far as i know) 5, 10, 15, 20, or 30. so there’s actually a lot more flexibility in dosage, especially if you combine pills (i.e. you can create 25mg dose from a 5 and a 20, if a Percocet 10mg x2 doesn’t work). anyway, send me an email, let me know who you are in the heading (or just put “migraine blog” or something so i don’t erase it) and i will answer any questions or talk about anything without hesitation. i have no problem saying what my situation is, i just want to be careful about what is available publicly online. 🙂

      2. ladymigraine says:

        I absolutely understand. I haven’t been employed since January but that person still exists. It’s always good to be careful anyway. I actually just spent some time going through my old entries and changing most names. When I was on blog spot, it felt like writing in a vacuum and I was too comfortable!

        Right now, I don’t feel the need to email but I will tell you that I think it was the slightly higher 7.5 (15 split, I have no idea why he prescribed it that way) that made me draggy. And like you said, the chemical processing of Percocet may change the variables a little. Thank you so much for all the information Michelle! I appreciate it.

  2. Michelle says:

    alright, well if you ever want to email just put the blog name or something related to migraine in the subject line & i’ll be in touch. us chronic migraine folks have to stick together! honestly, i’m so glad i stumbled upon this blog… not because it contains anything new or useful for me personally, but because of the human interaction with “someone like me.” i’ve always known there ARE other people who deal with this, but the few i’ve talked with haven’t had the extent i’ve had or the number of things fail to help them that i’ve had. obviously i’m not glad you’re suffering, but i AM glad we can at least connect. not sure about you, but i often feel lonely. my family is amazing, so i don’t mean “i have nobody to hang out with” lonely, but lonely in that as understanding as they are, and even though they suffer to an extent (ours is genetic but mine is by far the worst) they can still have lives. sometimes it feels like i’m the only one in the world & i’m scared to death that the only things that help me survive the pain will be taken away by law or because doctors are too afraid of being punished. it’s horrible to KNOW that you’re doing things correctly, you’re doing everything you can, and still nothing is guaranteed because of politics. sometimes it seems like if i wrote to someone pushing for tighter med restriction, i’d be the only one pleading with them to see what real pain is like on a daily basis, and they wouldn’t believe me because SURELY one of the dozens of things i’ve tried would help if only i wasn’t so resistant! sounds like you’re in the same boat as me!

    1. ladymigraine says:

      Hey Michelle ~ yes. It does seem like we’re in the same boat. I appreciate the connection too, thanks so much for your comments and sorry about the delay in my reply ~ I had a headache 😉 I have met (online of course) a lot of people who are chronic pain / migraine sufferers, but a lot of them have 24/7 pain due to ON any of those complicated other nerve / neurological disorders and most also have Fibro or other illness as well. It’s been wonderful sharing with them (makes me feel lucky for my ONE illness and bit of non-drug pain free time) but you’re one of the first I’ve talked to who truly has nearly untreatable chronic inherited migraine, just like me. My family also all get them (not my daughters yet thank god), but, like your family, not severely. I think I will email soon to get a few more details before my dr appt on Friday! Thanks lady ~elizabeth

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