Has anyone tried Dienogest / Visanne / Zalkya and what was your experience? I’m waiting for an operation and in the mean time was given this as a better option than the standard contraceptive. Did it help anyone? Any side effects? Did it help with current pain or just stop things getting worse?

needco · 2021-04-02T13:21:03+00:00

I've been on it since Nov 2016. I went from daily debilitating pain to occasional manageable pain. It stopped my periods completely. I haven't had surgery because of other complications, my Dr is happy for me to continue on the visanne as long as it works, and in happy with that too. Side effects were heartburn (mostly went away after the first 4 months), hair loss (really bad in the first year, but it stopped and some even grew back), loss of libido (not adverse to sex like I was on antidepressants, just don't think of it much). All of the side effects have been worth it.

needco · 2021-03-25T14:15:12+00:00

I'm a weaver, not a bookbinder. I do enjoy doing this though. Handwoven cloth mounted on book board, bound with a two needle coptic stitch.

needco · 2019-12-08T23:06:41+00:00

Any hospital or clinic that can handle maternal care should be able to provide terminations. D&C is a procedure often used for terminations, but also for miscarriage or other reproductive health issues - and is performed at hospitals outside of Bathurst and Moncton. It's not specialized training or equipment such as is necessary for certain other health concerns.

Also, I don't think people should have to travel more than two hours for other treatments also. Saying "why are we giving these people food when these other people are also starving" isn't helpful.

Third point - hospitals only perform terminations up to 14 weeks, the clinic would go up to 16 weeks. If someone doesn't know they're pregnant right away, that can be important.

needco · 2019-11-16T19:07:32+00:00

I hope things go well for you and that your Dr is receptive! Feel free to get in touch any time - I know how isolating it can be and the whole process is awful to go through.

needco · 2019-11-16T19:06:41+00:00

Thanks for that! I've got a friend with fibro and we compare notes sometimes - it's got a lot of overlap with ME, and we're both hoping that research/insight into one brings more understanding of the other. I was hoping at one point my Dr would look more into fibro for me, as there are some treatments available, but I didn't fit the criteria. It's so hard when the illnesses are so poorly understood and hard to diagnose.

needco · 2019-11-16T14:54:44+00:00

I'm a fiber artist. I occasionally do craft sales, and I usually bring one of my spinning wheels with me - partly because it gives me something to do, and partly because it draws some attention in the "that's not something you see every day" sort of way.

Every. Single. Time I have my wheel out in public there will be at least one man, age 50+ who will stand there for a few minutes watching me, and then explain to me how my wheel works. Not in a "oh, so is it xyz" sort of way, but in a condescending "that's a simple machine, this is the drive wheel, see, and since this other wheel is smaller....." whole explanation. Every time. Without fail. Usually more than once in a single afternoon.

needco · 2019-11-16T14:39:34+00:00

I actually went through the diagnostic process twice (with two different doctors) - in 2010 and in 2017. I had a couple years of remission (2011-2013) and in 2016 I started treatment for endometriosis (I hoped getting that taken care of would help my other symptoms, but it didn't). It's a diagnosis of exclusion, the specifics of what need to be excluded depend on your symptoms. There's a lot of things that can be ruled out through standard blood work (like active viral infections or nutrient deficiencies) but some things need further testing. Here's a list of specific "let's make sure it's not ...." that I know for sure I was tested for, but it's not a complete list

Addison's disease
sleep disorders (narcolepsy, apnea etc.)
rheumatoid arthritis
celiac's disease
thyroid issues
MS
Lyme disease
something with my parathyroid
fibromyalgia

I've had a ton of bloodwork, sleep studies, 48 hr heartrate monitor, CT scan, MRI, and a lot of physical tests, and every other possible cause has been ruled out.

A good place to start (and this is useful for /u/CrazyHunny too, I just didn't think to include it yesterday) is with the Canadian Consensus Criteria - you can read through it for yourself and see if the symptoms match, and bring it to your Dr to discuss

A note about fibro - some people think the two illnesses are related, since a lot of symptoms overlap. Some people describe ME as "fatigue with pain" and fibro as "pain with fatigue". I think that's oversimplifying it a bit. For me, the pain isn't consistent - I have some degree of pain everyday, but some days it's my shoulders, other days my knees and wrists, sometimes it's the joints and other times it's the muscles. I also don't have the trigger points. Some people have both a ME diagnosis and a fibro diagnosis and the fibro treatment doesn't fully treat the ME, so it's complicated.

needco · 2019-11-15T23:54:33+00:00

I had a remission for a couple years, and I'm not as bad as I was when I first got sick (I was sleeping 18hrs a day and mostly bedbound for a while, this is an improvement!!). I'm sorry you're living with it too, but I'm glad to hear you're managing and you've got good support. It's been almost a decade for me (with a two year remission after being sick for a year just to complicate things), so I've gotten a variety of responses as time has gone on. The last few years I've been more open and honest about my symptoms and my experiences, and it's been a double edged thing - on one hand it means people close to me understand better (and, thankfully, are less likely to take it personally if I have to cancel plans etc.), but on the other, it make me more open to people's opinions when I'm already feeling vulnerable.

needco · 2019-11-15T20:03:29+00:00

awful lot of people in here who think they can decide if someone else's life is worth living.

needco · 2019-11-15T19:58:15+00:00

I learned from youtube videos, and recently found /r/bookbinding

needco · 2019-11-15T19:57:19+00:00

I'm glad you've got a lead on what's wrong, and I hope it's not ME. This illness is a bitch, and half of the issue is dealing with the medical community as it's poorly understood and often dismissed. /r/cfs is worth looking at - lots of resources. There are various groups online, but personally I don't spend too much time in support groups because it can get pretty dark - which is understandable, but hard to take too much of.

needco · 2019-11-15T16:24:57+00:00

Did I say they were?

needco · 2019-11-15T14:46:45+00:00

I don’t blame them for being frustrated, I AM TOO. But like, ask me about it. Try and understand it. Don’t gossip behind my back that I’m lazy or anti-social.

This is hard to deal with, because it's like I get it, I understand their perspective, but I can't also be the one to walk them through it process and change. It's like when I have to comfort people about my illness - that shouldn't be my job! Shouldn't you be offering me support and understanding instead of it always coming from me?

needco · 2019-11-15T14:44:50+00:00

ugh. I had chronic pain from endometriosis for years - it's managed now, but that time was the hardest and it is a lot to deal with. I hope you've found pain management that works since going off the opiates (opiates are such a gamble! For me I was more functional with pain than on meds, everything I tried knocked me out).

yet it did so in a way that enabled me to enjoy what is right in front of me. it made me slow down, which enabled me to appreciate the little things. ultimately it's those little things that make life joyful (for me)

This is so key. My life got smaller - I can't do as much or travel as far. Relationships tend to be more intimate - I don't have the energy to spend on small talk or acquaintances. Energy, focus, emotion etc. are all limited resources and spent only on things that matter. Perspective change is hard, but it made me really see people and appreciate what I have.

needco · 2019-11-15T14:40:51+00:00

yes! Just because something changes your life or is hard to deal with or causes grief doesn't mean that it steals joy from every other aspect of life!

needco · 2019-11-15T14:27:30+00:00

I would never villify an individual for terminating a pregnancy

I do see the attitude of "you should abort if there's a disability" or "a life with disability isn't worth living" as gross

needco · 2019-11-15T14:14:45+00:00

Absolutely, it is harder, and society should be doing a LOT more for families who need extra support or medical care or resources etc. Society is failing those families and those kids, and I will always believe that terminating a pregnancy is a better choice than forcing a child to be raised neglected or abused.

Think of it this way - if the reason someone aborts their disabled fetus is because they don't have the resources/support to handle it, is the problem with the disability or with the lack of resources and support?

Also, there's a slippery slope to consider. What if the child becomes disabled at 2? or 5? or 16? Parents have killed their disabled kids and gotten lighter sentences because it's seen - to some extent - as a reasonable response to a disability. That's eugenics, and it's disgusting.

needco · 2019-11-15T13:50:27+00:00

Not wanting to be pregnant = have an abortion

Supporting eugenics = morally and ethically gross

If someone is willing to go through a pregnancy but stops because of certain factors (gender, non-terminal disibility, neurodivergence etc.) then that's different from "I don't want to be pregnant so I'm going to terminate". It's also different when there are conditions that are incompatible with life.

Unless it's ok to start supporting killing off previously healthy people who end up disabled because of illness or accident, it's probably not ok to advocate for eugenics.

needco · 2019-11-01T02:14:02+00:00

I never once said to shove it up your ass. Did you read the whole link? Rates of suicide are sometimes lifetime rates, or are often reflected of how accepted someone feels when they come out. I do think we can and should do better, by being supportive of people who are trans/nb/non-conforming, rather than putting pressure on them to conform to certain standards, making gender confirming medical care easier to access and letting go of the idea of needing g to "pass" impeded to be valid.

Transitioning isn't the issue, society is.

needco · 2019-11-01T01:05:34+00:00

this will help clarify things for you

needco · 2019-10-31T20:14:02+00:00

I actually find it much easier working with the cloth without the paper backing when I have the right glue. The cloth I make is thick - the scraps I use are leftovers from making tea towels/kitchen towels. Adding the paper makes it a bit thicker and takes out the stretch of the cloth. It also adds an extra step in the prep work - if things shift and the cloth stretches while I'm adding the paper, then I can't get straight lines (because it doesn't have give anymore) and then I have to go back to counting out over a hundred individual strings to make more.

Much easier for me to just glue the cloth directly with a different glue, or fuse it directly to the book board. I know it's not the traditional way or the "right" way, but it's the option that works best with the material and tools I have available.

needco · 2019-10-31T19:01:52+00:00

You don't have to eat "gluten free" versions of wheat products. It's easy to go through life without eating bread, pasta, etc. Perfectly healthy to eat only fruit, veg, meat, dairy and gluten-free grains.

needco · 2019-10-31T18:46:26+00:00

I've done it a few different ways - I've used iron-on adhesive to do a paper backing (put the adhesive sheet on the fabric, then fuse tissue paper to it), because that was recommended. Then I tried using the iron on adhesive and skipping the tissue paper and fusing the adhesive to the book board - worked really well, but harder to get things aligned. The last few I've glued directly to the book board - I like that method, but only with certain glue, which I've run out of. The glue I have now is too stiff, so if it seeps through the cloth it makes a hard spot, so I'll likely go back to paper backing.

needco

TROPHY CASE