I just created this profile because I have become increasingly isolated this year and thought it would be beneficial to connect with others that might be going through something similar. Quick background- I was diagnosed with Thalassemia in 2011 and MS in 2017 (although I have had MS symptoms for many years). I am divorced, I recently lost my job, and am now going through the nightmare that is getting affordable healthcare while trying to find a new job during a pandemic.
That being said, I know that things could be worse, so I am very grateful for all that I do have. I hope to share positivity with those who need it and will happily accept any advice anyone has regarding living with chronic conditions, especially during these tough times.
Welcome to our crazy 😜 group of MS’ers. This is a great place to vent and find out what’s really going on in the MS 🌎. We are not doctors but we are the ones living with MS and can help with many questions. There are no stupid questions here and we are all here to help and become friends 🥰. Also private messages also. Hope you enjoy our site and a big welcome 🤗😉👍🙏 Ken 🐾🐾🐾🐾
Thank you so much Ken! I will definitely have questions! And even though I have a stellar neurologist, it's wonderful to hear from people who live with MS 😀❤️
Thank you so much for the welcome 😊 I'm so happy to hear that this group has helped. For the past 3 years I have tried (in vain) to help my friends/family/coworkers understand my condition, but it has been a struggle. I suppose it's not always easy to wrap your head around MS if you don't have it. But everyone on this site has been so kind ❤️ I really appreciate it
Oh, I already have heard it quite a bit over the last few years. I never quite know how to take it... Should I be flattered that I look "good"? Should I be offended that people assume I'm not sick just because I don't appear ill in front of them?
If you've heard that line before and have any advice on how to respond, I'm all ears 😊
Thank you! Humor is SO helpful! I've noticed that I've been prone to gallows humor lately, but I love cheesy jokes as well and I've even been laughing at myself a lot lately. I dropped a fork twice the other day and the third time I picked it up, I accidentally flung it! When I was first diagnosed, that would have made me cry. But now? I just laugh and tell my body to stop being so gosh darn rude 😅
that is what i do all the time ...just have to look at it and laugh for this isn't able as it could be like the old days before the meds to help it slow down ..i do believe in the Ocrevus for i walk better but yes there are days were i just fill like a lump of shit...but most days are great and i can do what i want ...just being slower at getting things done but still can do ...but the laughing at self i think really helps for yes it is different but ha i can get up and run around well not the running ...you get the jest of it ...we are a live and can still do most things maybe slower or do it different but can and will ...laughs and smiling as if you have a secret makes me laugh ....just do what i want to....i am an adult sure older and of course lot heavier and i blame that on the first shots and all of the meds before ..being a lot older but i still go to the beach and drive a toy to get to go fast and see the beautiful world on top of a hill to see the ocean roll in ..lots of fun ...you will find a way of having fun in your life ...anyway to me nothing is not aloud ...have to still enjoy life and fun is the best way for me ...i do talk to much i go on and on ...keeping on for this is still your life ...love and much happiness...
You are so darn sweet. And again, you speak the truth: We have to enjoy life and find our happiness.
When I was first diagnosed with MS, my doctor said, "You will never be 100% again. Many of my patients think that with treatment, they'll go back to who they were. They don't understand that the damage is done and that the purpose of treatment is to slow the progression of the disease. Not get you back to 100% of the person you were." It sounds bleak, but I'm so grateful she told me that. It set the expectation: I'm never going to be fully repaired. But, I'm also not hurtling down a rabbit hole of symptoms. She was right- the treatment slowed the progression. So I can still enjoy things, I can still smile and I definitely laugh as if I "have a secret" 😁
Welcome! The most important thing about MS is nutrition. As far as a job is concerned, try looking for a remote job if you can (ziprecruiter.com and just a regular google search).
Thank you! I have been looking for remote work, so fingers crossed something comes through 🤞 And I agree, diet is VERY important. I notice a big difference when majority of my food is not processed and is plant-based 🥗🥑🥕🥦
Welcome! You found a welcoming, entertaining, and informed group of people. I found this group over a year ago and I’m so happy I did. Hope you have a good start to your week. I wish you the best on searching for a job.
CHOO-CHOO,welcome aboard!Sorry you have to be here,the initiation is tough(ms)you will find a bunch of informative ,understanding people.they have kept my sanity
Welcome this place seems like family more than anything family who know what we go thru you'll love it here stay strong this pandemic gots everyone going crazy hopefully they get it under control
Many blessings to you too 🙏 And I'm right there with you- I love reading the posts and comments. Everyone is so kind and uplifting. I wish I had known about this site sooner ❤️
Good morning and thank you! You're absolutely right- Everyone is so friendly and helpful. And oh my gosh, they're also very funny! Some of these posts and memes launch me into giggle fits 😄
No, you will never be 100% again, but you can be 110%! Just wait, all the new things you will experience! Relapses are so much fun! Take them for what they are and you can deal with the disease much better. You'll look so good for someone with m.s., as you keep walking into the side of a building because one leg today isn't doing it's job? You may develop a keen cense of the location of the nearest bathrooms not even on any map (GPS bladder). BUT, nutrition, nutrition, nutrition, and avoiding all those processed foods my companies made our living off of servicing them as a specialized contractors, and you may like many others, beat this thing in part. I've not had a relapse in 6 years? now, and my neuro has told me I'm likely done with those as others like me have done. You won't loose all the "gifts" you will receive from this disease, but with nutrition I've lost a few that the specialists have said were for life. Like vision loss due to optic neuritis 7 times over the years. Now I see perfectly when I can find my glasses. No missing spots, except on my cellphone which has this burnt out pixel? No, really. Look into the nutrition thing. And avoid processed foods and that whole lifestyle. Anything with things you can't pronounce or don't know what they are and supposed to go in your mouth, avoid like spoiled milk.
I went through many years, and several types of DMT's till my neurologists told me to stop them, and their flu-like symptoms that went away. Then came back, and I lived with them for years, easing only about a half day before my next injection. The Interferon B's did keep me from getting sick of 30+/- years. Not so much as a sniffle even when my whole house was sick with the flue. One evening, I think I'm getting it (the flue) everyone else has!? Next morning, fine. Nothing.
I've read that an inhaled version of the interferon B in ??? country is fighting COVID successfully, preventing from getting it. I could believe that!
Anyway, welcome. I have no clue what Thalassemia is, but will look it up. The nutrition thing, works on essentially all the auto-immune diseases from what I keep reading. So my word of advice. AND, always, always, keep that positive attitude, and NEVER give up.
Wow... It's like you KNOW me! Walking into things, knowing where ALL the bathrooms are everywhere I go... My favorite is when I try to pick up an object or twist a cap on something and my hands are like, "Nope!" I have such rude, mutinous fingers 😂
And congratulations on not having a relapse for 6 years! That is amazing!
But you are absolutely right- Nutrition, nutrition, nutrition! Thankfully, I love veggies, fruits and all things natural/unprocessed so I did not have to make much of a change. Just have to stick with it!
Thank you for the welcome, the kindness, and the advice ❤️
Dear C Jasmin, I have been through a very similar year, after living with ms for 13 years I had a heart attack and bypass surgery, which forced early retirement, as soon as I started to recover from heart issues the Corona virus hit and closed everything including cardiac rehab. After working for twelve years with ms, and eight with foot drop as a letter carrier I was beaten by heart troubles, needless to say the world has shrunk dramatically. Thank you for sharing your thoughts. ( hope this wasn't too whiney)Robert
in reply to
Not whiny at all Robert. I am really touched that you would share your story with me. I am so sorry about both your MS and your heart troubles. I'm in awe of your perseverance. You truly are a survivor.
The Corona virus really threw us all for a loop and has certainly shrunk our worlds. The silver lining for me is that I finally got sick of my isolation, did some searching, and found all of you lovely people! I love hearing all of your stories, whether they are heartbreaking or uplifting. They give me perspective and hope, which I am so grateful for ❤️
in reply to
Thanks so much for your kind and thoughtful responce, oh and by the way sorry for the reason you're here but welcome Robert
Welcome to this wonderful group Hidden , sorry for the reason. This is a wonderful group with wonderful people. If you have a hobby, please share. A lot of people do paintings and other kinds of art that they share. Look forward to meeting you.
My Neuro mentioned it when I was first diagnosed, but that was 3 years ago so it is good to have a reminder 😊 Thank you and I hope your week is off to a great start
Welcome my friend. This is a great group of peeps. We’re all different but we all share a bunch of similarities. God bless you CJasmin. You’re safe here.
I'm finding this to be true again and again- What a great group of people ❤️ And yes, we definitely do share similarities even if we are different! God bless you as well 🙏 Hope you are having a wonderful day
Hello! 👋And thank you! It is absolutely bittersweet, but I'm basking in the "sweet" side of that notion at the moment because you all have been so amazingly kind. I hope treatment is going well and that you are having a great day 😊
Zoom meeting this morning with my neurologist, asked him how should I be feeling this morning with all we went over, “He said, I’m happy with what I see, and where you are with treatment”...
no new lesions.
😊
Sooooooooo , I’m beyond happy with that response from him!
All I ask, is a chance... and I have it...
Hope your day is going great!
Those are the best phrases to hear from a Neurologist! "I'm happy with what I see" and "No new lesions" 😊 Those are significant victories and I'm glad you got that good news today!
Sorry, I don't know the name of the show. It was a reality show in which, a person hires another to investigate/expose other people who may or may not be frauds on social media. Your profile mentions that your from California and your pic looked like the girl on TV. I put 2 and 2 together. I know that's not much to go on.
There is a show called "Catfish" where they investigate people who are dating online, so maybe you are thinking of that? Either way, that is hilarious and if you do end up remembering the show, please fill me in 😄
Welcome! I am so glad that you found us. I was diagnosed with RRMS almost 39
years ago, and it is now SPMS. Neither form of MS has been much fun, but it hasn't
ruled my life or become my identity either. I am so grateful that I was born stubborn and ready to fight, as both traits have been handy to have! I am retired now, after working as an administrator in higher education for many years. I am an animal and plant lover, and I currently volunteer at our local Humane Society. I am a Master Gardener in both North Carolina and Florida, but I just tend to my own weeds now! I look forward to hearing more about your fur babies!
Thank you for the welcome! And wow, to be living with MS for so long... I am sorry, but I am also inspired. You are incredibly strong and perseverant. Also, we may be twins- I was born stubborn, feisty and ready to fight; I love plants and animals; Volunteered at a local cat rescue group for a while... ❤️ Crazy how people who have never met and who live miles apart (I'm in CA) can have so much in common! Thank you again and I will certainly be sharing more about my fur babies in the near future 😸
We may very well be twins! I was a single Mom too! We divorced when my son was 2, so I was the one who raised him. All of my cats and dogs are rescues, but they get along great with each other. I had to downsize my flower gardens last year, as it had become too much for me to keep up with, but I still have a lot, and I love every bit of it, except for the weeds! Have a wonderful day! Linda
Welcome, I'm pretty new also signed up recently. Was diagnosed with MS sometime ago 1993 wow how time flies! It's wonderful to have a place to connect with others who understand. I have found many people try to but they don't quite know how to.
It's fun to know there is a place to communicate.
🙂👋👍
in reply to
Hello and thank you for the welcome! It certainly is reassuring to have a great group to talk to ❤️ I hope you are doing well and having a fantastic day 😊
I have read your post and I think about a friend and an uncle who have MS. It sucks watching the progression of it. Are you able to get disability for the MS? I know it isn't easy to get disability period unless you have a doctor that's willing to work with you on this. My friend was able to get disability with his soon after he got married. My uncle who was in military developed it while he was in but was able to retire from service with it. He still now works in different government related jobs but sure has days where he cannot get out of bed. He is lucky he has the coworkers that he does have or he would be out if a job. He is set to retire soon. I hope I can get educated more from this site as it interests me because of the people in my circle who have it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hi, I'm Bonnie and I'm new here
I'm new here. A little bit about me...
I'm new here
I'm new here
I'm new here
