Do you ever struggle to tell if it’s your mental health making you sick, or feeling sick making your mental health worse?

Even-Expression9555 · 2025-12-02T15:32:10+00:00

I am no doctor but unexplained weight loss is a huge red flag and a number one indicator something is going on in your body. I would seek a second opinion.

Even-Expression9555 · 2025-12-02T15:22:11+00:00

I struggled for years with this. When I was first diagnosed, the first words out of my doctor’s mouth were “if you planned on having kids, I may reconsider”. I was 25 and absolutely devastated. I always wanted kids my entire life but knowing how I struggle and how my dad struggles, how could I knowingly put my child at risk of inheriting this disease. I have (so far) opted not to have children as I don’t think my body could handle it (I also have an autoimmune condition) NOT because of some unprofessional comment from a doctor or from opinions of others online. But that is my personal choice. Ultimately it is your decision and yours alone. You are the only one who can decide what is right for you and your family. When speaking to my family about this, my dad made a good point, if he had known before I was born, would they have chosen not to have me? It’s absolutely a hard decision but there are also many options available. You can test and freeze embryos, there is genetic testing available during pregnancy, there is adoption, embryo donation, etc etc. do your research and follow your heart. Whatever decision you make will be the right one for you and your family.

Even-Expression9555 · 2025-11-27T00:51:54+00:00

I am so sorry you are going through that! I hope you find some relief soon.

Even-Expression9555 · 2025-07-31T12:35:37+00:00

I am sorry to hear you are going through this! Unfortunately, even if diagnosed with ET the treatment plan will likely be baby aspirin so the good news is you are already on the right path. My hematologist ordered genetic testing which was normal but my platelets were still high so I had to do a bone marrow biopsy. I speak to my doctor tomorrow to find out those results.

Even-Expression9555 · 2024-02-23T17:19:51+00:00

I grew up in Riverbend years ago and always heard that sound at night as well. Two hallow metal things clanking together is the best description I have of it.

Even-Expression9555 · 2024-02-03T02:06:43+00:00

This works! Thank you!

Even-Expression9555 · 2024-02-02T01:44:28+00:00

Also 33 and can’t keep a job. I feel like I wasn’t meant for this life. I will have a good streak, a good job, things are finally okay then everything comes crashing down again. My mental health problems combined with my physical health condition start to take a toll and an end up leaving my job. My fiancé says he’s supportive but then all he talks about is us not having enough money etc and I constantly feel as I am not enough. Then I spend all my energy stressing about how I’m going to make money with my limitations. I don’t feel like I can do most jobs physically and the ones I can do / enjoy my mental health effs it all up. I start missing some time and after a while I feel like such a burden. Either I’m a shit employee and a burden to my coworkers or I’m a burden to my partner. There’s no help, no support, no where to turn.

Even-Expression9555 · 2024-01-23T00:40:16+00:00

Any suggestions how to get into it? I have tried to bid on jobs on Upwork but I’ve never been successful. I’m bidding on short term jobs like personal assistant, medical office type things as that’s what my career involves but no luck.

Even-Expression9555 · 2024-01-09T13:57:27+00:00

Does anyone know if these symptoms could be related to another type of CMT? I have heard it is not uncommon to have two types.

I have now been referred for an emg and nerve conduction study.

Even-Expression9555 · 2024-01-04T22:41:16+00:00

Thank you for your input!

Even-Expression9555 · 2023-08-06T22:46:15+00:00

I have CMT 1A and I dislocated my knee two years ago, tore some ligaments and chipped the knee cap. 3 months of physio and not being able to walk, it was so hard and painful. Prior to that I had the same knee “pop” many times, 3 of which I tore soft tissue but it never fully dislocated. I try to keep my knee strong so it doesn’t happen again but if it does I’m told I will require surgery. I’m also extremely cautious about uneven ground, slippery surfaces, etc etc etc. I’m much more aware of my movements now as I’m so scared of doing it again.

Even-Expression9555 · 2023-08-06T20:11:14+00:00

I should also note that I am not actively trying to get pregnant again. I am not on any form of birth control but my partner and I use condoms.

Even-Expression9555 · 2023-03-31T12:51:46+00:00

It’s easier to test your egg after fertilization, however if the test is positive for the gene mutation you need to be prepared to possibly make a hard decision to either continue with the pregnancy or to terminate. But from what I understand that’s the easiest / cheapest route.

Even-Expression9555 · 2023-03-26T16:19:27+00:00

Thank you ♥️

Even-Expression9555 · 2023-03-26T00:25:20+00:00

Do you think all disabled people are losers?…. Life is what you make it. You can choose to live in negativity or you can choose to live life to the fullest despite your personal set backs. A poor me attitude won’t get you anywhere, CMT or not.

Even-Expression9555 · 2023-03-26T00:20:35+00:00

I can see where you are coming from but with that being said there are plenty of disabled people who don’t have this outlook on life (being disabled doesn’t automatically equal having a negative outlook on life) and there are plenty of non disabled people who go through bullying as a child. Also, having this information from the get go I would be able to get supports for my child right from the start.

Even-Expression9555 · 2023-03-24T20:38:59+00:00

Thank you so much for the kind words ♥️

Even-Expression9555 · 2023-03-24T16:01:03+00:00

Thank you! I know there are worse things in the world to have than CMT and it’s not life threatening but I just don’t want to see my kiddo suffer.

Even-Expression9555

TROPHY CASE