I am back after leaving this site. Still looking forward to getting to know as many people as possible.
PPMS sufferer: I am back after leaving... - My MSAA Community
PPMS sufferer
Written by
rlh1974
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50 Replies
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Welcome back. How's the family? How's the ms doing? Blessings Jimeka 🦋 🌈
Glad to have you back rlh1974 😊
Hi rlh1974 . Which one are you? Glad to have you back.
Jesmcd2CommunityAmbassador
Welcome back rlh1974 ! As l wonder why you would leave in the first place.😊 Always glad to have you back though! How are you doing?
J 🌠
ps. As Iona60 said which 1were you? 😅😅
Jesmcd2 I left because I got completely overwhelmed with my life and MS. Feeling like an incredible burden, Not only to my family but to others on this site. I had to take a break. A temper tantrum if you will. I am sure many can understand. Anymore questions. Feel free to message me. I have recovered from my temper tantrum and came back to being an adult. I don't like being an adult. But at 42 with one kid going off to college and another in her first year of high school. I guess I have to.
Welcome back rlh1974 and please believe me, never a burden here.😊 As you know all are welcome. Sorry about the email situation, we all were having a problem a while back. Not sure what happened to yours though.
As far as the temper tantrum goes? 😅 We have all been there, are there, or going to be there! I don't care who you are!😅😅 But, that's what we are here for, to vent! ☺ So it's all good!
Btw we have a birthday club, so let jimeka know and you interests.
Jes 🌠
Hi!!! 😊I understand about feeling like a burdened to others. I still do a lot around the house even when my body tells me it's time for a break. I'm still a little newbie to this MS thing. I know I have it and I sort of accept that I have it but it gets overwhelming. 😕 I have days that I feel great and ready to rule the world and I also have days that I want to sleep because my body hurts and feels weak. But like you said we have to be adults and keep the tantrums to a minimum.....😆 I have two children and have to be strong for them.
Jesmcd2CommunityAmbassador
Welcome back rlh1974 ! As l wonder why you would leave in the first place.😊 Always glad to have you back though! How are you doing?
J 🌠
ps. As Iona60 said which 1were you? 😅😅
Well, I left because sometimes I get overwhelmed. I am having a super rough go. Long stories. Then the site did not recognize my email anymore. So, I was, still am Rob. I forget what my username was. Pretty sure it was rob81598. I had some good posts LMAO! Thanks all for the warm welcome, even though none of you probably remember me 
So Hi all, It is good to be back.
Welcome back!
Welcome back rlh1974 !
Welcome home to a fellow PPMSer! Ain't we got fun?
I don't recognize you, TheNextDoctor . Are you new? If so, welcome! Sorry you have MS, but we're happy you found us. I hope you find us a great place to share, ask questions or just vent. 💕
I had another user name before and for some reason, this site deleted my account. So that is why you don't recognize me.
It's great to just be recognized. Yes, I am new to this group (Greetings, fellow Members of the Resistance) but I have read your stories of the challenges that you, and we all, face day after day. PPMS since 2010.
Love your 'fellow members of the resistance' line. Reminds me of Star Wars. 😊 Now I'm curious about your TheNextDoctor moniker. Are you a doctor or studying to become one? I'm @tutu because we lived in HI for 20yrs, where Tutu is Hawaiian for grandma. My grandkids call me Tutu. 💕
Hmmm- I curious too, the name "The Next Doctor" could be the next Dr. Who-just thinking out-loud (well, as loud as I can be online LOL).
Got it in one, jennie62. I'm a big Doctor Who fan, along with Star Wars and Star Trek. And that resistance note is from Terminator - Salvation "My name is John Connor, and if you can hear me, You Are The Resistance!" We talk and share stories so we don't feel so isolated. I'd write more but I've forgotten why I'm sitting here.........
TheNextDoctor You've joined a big group of us that all often forget what they set out to say. Welcome aboard.
Wow, jennie62 , great guess! And thanks for the humor, TheNextDoctor !
As long as it is only the first original Star Wars!
Also, I do have two sonic screwdrivers, the place I work built a Tardis...so.....
TheNextDoctor
PICTURES of the TARDIS Please!
Star Trek? Original series from the 60s & 70s or movies? Must admit I'm a movie geek and have seen most of the Star Trek movies with Kirk, Spock and Uhuru (to name a few) and I should say I made sure I saw the original Star Wars movies waaaaaaaaaaay back when.
Forgotten why you're sitting there? Hahahahaha Boy do I have days-no, I should say hours like that. Main reason I can no longer write.
Hope you're feeling good today!
Jennie
Welcome TheNextDoor to this awesome chat room, from Fancy1959. I'm glad you have decided to become part of our extended family in this chat room! You have found a safe place where you can come and talk to people who truly understand what you are going through, ask questions, or simply voice concerns. This chat room is full of some of the most caring, kind, and compassionate people you have ever met. We listen well, have broad shoulders to cry and vent on, and we strive hard to keep our chat room very supportive and positive and people seem to thrive in this atmosphere!
Until we speak again please take care of yourself. I look forward to getting to know you better. If you need anything don't hesitate to give me or Tutu, or Jesmcd2 a post or call and we will do all we can to assist you. Simply remember that together we are stronger. Together we can accomplish almost anything!
Oh SOOOOOOO much much, Eye roll.
PPMSer, That is a good term! ROFL
Looks like everywhere I go lately there are PPMSers (is it just me?) makes me feel better and not so alone. Glad to know you're all here!
Jennie
jennie62 I wish there was a like unlike button. you know what I mean. I am glad you don't feel alone. I just hate another person having PPMS
I know what you mean. It's great knowing this place to vent or release a few laughs if wanted. I'm never sure how I feel one minute to the next. Just getting used to having MS then being told I have PPMS. Now since I last saw my Neuro (last Friday) was told I have PP/Relapsing MS. HUH? Never knew that type even existed.
One thing I do know for sure is this is a really great group of people and I'm just glad you're back here too! Nice to know when it's a bad/good day they're here.
Jennie : )
Hi and welcome back. I also have PPMS, would love to meet others also. You can message me. Darlene
So glad to see you back too Darlene. How are you doing? Missed you blessings Jimeka 🦋 🌈
I'm so glad you're back and hope you're doing well.
Welcome back! 💕
All, you humble me with the warm greetings back. My family is amazing! The MS is awful. I have been upgraded or down whatever you want to call it, to PPMS. took them 3 years and 4 meds like Abagio etc to figure it out. I permanently need a cane and am getting a prosthetic for foot drop and a walker. Grrrrrrrrrrrr. I just filed for Social Security Disability . Thank God my employer pays for all that. I have not worked since Halloween, but have disability through work, so I still get paid. An Amazing blessing. We are remodeling our house for a first floor bedroom and full bath so I can stop falling on my face on the stairs. That is just the surface. I won't bore all of you with my sob story. I do know that God has changed my life for the better through this Sh&^, I can spend time mentoring and studying, The studying takes forever with my brain fog. However. I have plenty of time since I am retired. I struggle with the fact I am now a burden for my family and can not do even basic things like go to church or do dishes. To much back pain. I have lesions and building discs in my Thoracic spine. Causes me misery. Anyway, I plan on writing and updating much more. I think I can help and listen. Also, get help and have people listen on this site.
Thank you all!
Sorry you are now PPMS rlh1974 , but it sounds as though you are blessed with family and a former employer willing to help you get what you need. Praying all goes well with the home remodel. We're always happy to have additional listeners and encouragers. We're here for you too. 💕
WAshingtongirl I wish my employer cared. I purchased the disability. My supervisors have not reached out once since October.... But hey! a great investment! One time I didn't listen to my wife and I got lucky. (with the $6 a week that is)
I do know you are all in my boat and care. Not to mention my AHMAZING (misspelled on purpose, sounds better with a H in there) family. I am blessed more than I had ever realized. Just took me getting knocked on my a&$ to figure that out.
It sounds as though you made the BEST decision when purchasing that insurance rlh1974 . Maybe an even better one when you wed your lovely bride and best friend. Now that's blessed! 💕
WAshingtongirl my wife is aHmazing! Best decision I ever made to ask her! I was so blessed when she said yes, then I do. After 20 years, she still hasn't thrown me out on my a&$
Hello Rob. I too have lesions in my Thoracic and Cervical spine. My arms, hands and back can be fine for days on end and then suddenly pain and loss of function occurs. The stabbing pain in my mid back area stops me from doing much. And the fatigue never seems to go away. I am so inspired by your strength to return to this site and tell it like it is. Yes, it does feel like a tantrum when you feel like the fight just overwhelms you and you lash out. I too have been unable to attend church, but I have been doing some bible study and prayer sessions on my own. I have been trying to live for today and not concern myself with the past or the far off future which has been a battle. I hope for and pray for relief for all people who have these invisible diseases. Please keep posting as it gave me great comfort. Take care. Vickie
Vlbrown57 you ROCK! Thank you! The great thing about my church is the Facebook live, so I atlas get to see the sermon. My back pain never goes away. My biggest problem beside that is the exhaustion. I have to rest up for day to do something. My sons graduation is coming up. I will have to sleep for a couple days ahead of it, then after I will have to lay in bed and cry. I am on Opana for pain. It takes it from a 10 down to about a 6 or 7. Problem is. My dose is about 4 times more powerful that heroin. Dr says it is like shooting up 2xs a day. So that is scary because it has no effect on me other than pain relief. I have had dozens of surgeries over the past 20 years.Some were necessary like my spinal fusion. But many of then were nerve surgeries chasing MS it turns out. Nerves swell causing pain. Been a frustrating battle.
Vlbrown57 , I applaud you for continuing to do Bible study on your own. My cognitive issues have pretty much negated my ability to do that anymore-in a group setting or on my own. But I don't get as frustrated with myself when I do a couple devotions in the morning. I may forget the 5 min after I read them and the correlating verses, but I enjoy the moment while I am in them. Thank you for your positive outlook and encouragement. You've brightened my day. 💕
Vlbrown57 great to hear from you! You are the first person I have come across with almost the exact same symptoms! I would love to talk some more!
Get your church to start live streaming on Facebook! Mine does just the sermon! I love it!. At least I get to start the week out with some encouragement!
Take care my friend!
Rob, you aree truly amazing, in three short years of diagnosis I went from RRMS to SPMS. As my MS started to progress we actually sold the house we raise our boys in, a large 3 story house and we now live in the ranch we built to keep me safe. I too, no longer try to go up and down the stairs.
I try to use my Walker and always keep my cane handy as well. On bad days or if I know we're going someplace where I will have to do extensive walking I take along my wheelchair. I now shop almost exclusively at stores that offer this motorized shopping carts. Without them I find shopping in large stores completely overwhelming and physically more than I can handle. I was approved for Social Security disability this past year and I qualify for Medicare on June 1st, 2017. You are very fortunate to have such a caring and compassionate employer and very supportive family. Sometimes it's hard to imagine but not everyone in this chat room has the support of their employer or even the support they should be able to expect from their family.
I look forward to talking to you soon. Please remember that together we are stronger! Until then please take care. Fancy1959.
Hey, welcome back Rob! Why would you have left? I enjoyed many of your funny stories! 🤣 Glad you are back!
Welcome back!
Good afternoon Rob or rlh1974, it's Fancy1959 officially welcoming you back to this chat room! I don't know what drove you to leave this chat the atmosphere is extremely supportive and we are full of some of the most caring, kind and compassionate people you will ever meet. It is a simple process to get to know people in this chat room, get in and talk to people via post you might make or post others have made and you wish to share information or experiences about. Remember we learn as much from our mistakes as we do our successes so by sharing both we can learn much from each other. It is a simple processes as long as you remember together we are stronger!
Until we speak again please take care of yourself. Fancy1959
rlh1974 welcome back from another PPMSer. I was diagnosed just two years ago so have not had some of your experiences yet. But I'm sure as time goes by we will have lots to commiserate about! I also am blessed with a family that has been supportive and helpful.
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