It’s Official

[MyGirlsMom]

Well, I knew this was coming but pushed hard to try to work through aling with a bit of denial.... I resigned from my job due to my MS. This is my first week no longer employed.

For several weeks leading up to this I shed buckets of tears. I was sad and mad at my body/brain for failing on me. I absolutely loved my career, profession, clients, coworkers and company and did not want this to be the outcome. Leaving work has been a huge loss to my identity and my place as a contributing member of society. I like being out and about and lately the disease has been isolating....except for all the medical professionals I continue to see. Sigh.

My STD ran out in early December and thus, I really had to make the decision. I had gone back to work 2-3 days per week, but on my off days I basically either laid in bed or on the sofa or went to doctor appointments. I tried to walk or do one thing each day (and sometimes had to as I have a teen daughter at home with a hubby travel most weeks). All and all, It was just not good for me or my family.

My company’s STD plan automatically tranferrred me to the LTD process, which includes applying for SSDI. Mentally it is hard for me to think of myself there as I remain hopeful this is just bump in the road. (Although I don’t think I can go back to a job full time.)

That said, there is a pre-existing clause (3 mos. prior to elegibility date) in the policy so I am wondering if I will even be covered. Based on a quick review of a preliminary paperwork involved, it will become a full time job to complete the appropriate documentation to even make a reasonable LTD or SSDI application.

My blessing is that I am in my late 50s. I have been so blessed to have been able to have work for the past decade since my diagnosis and especially since having this disease from what I guess was at least starting around age 30. I truly am appreciative for that as I know so many have to stop working much sooner.

Overall, I know this is the best decision for me and my family but the loss and isolation of not working is really a struggle for me right now. (Of course, it is only week one! LOL!). I am sure there are some on here that can relate...any experience and ideas are always welcome. Thank you for letting me share this update.

Best to you all - MGM

[Mamabug]

Well, I knew this was coming but pushed hard to try to work through aling with a bit of denial.... I resigned from my job due to my MS. This is my first week no longer employed.

For several weeks leading up to this I shed buckets of tears. I was sad and mad at my body/brain for failing on me. I absolutely loved my career, profession, clients, coworkers and company and did not want this to be the outcome. Leaving work has been a huge loss to my identity and my place as a contributing member of society.

I get it. Wow, do I get it. This was me in 2008, except I didn't quit my job.

I was let go after requesting FMLA leave four years in a row. It was the third job I'd lost in 6 years. The first one, I ran out of FMLA time (used all 12 weeks and needed more). The second job I was self-employed and had to quit.

I grieved, fairly deeply, the loss of a career, for about three years. But, in the midst of that grief, I knew I still needed to find purpose. I jumped into volunteering.

I'd worked in both the social work and early childhood fields. Over the years, I volunteered for a preschool, for Circle of Hope (works with poverty issues), in a first grade classroom, CASA, played piano at a nursing home, read to residents at a different nursing home, church (children's ministries and music), etc.

I I do much less now than I used to, but those years were a blessing. I got to cram in many experiences that I would have missed out on if I'd been employed.

I still wouldn't wish for MS. But I feel like, in some ways, I turned lemons 🍋 into lemonade.

[Canary54]

MyGirlsMom:

I've been off work since early April, transitioning from STD to LTD to, now, Social Security disability application. I am 64 and had planned on working just one more year to become Medicare-eligible......but I continue to grieve the loss of my job. It's been nine months, but I am still struggling to figure out who I am if not that person I was at work.

I'm just giving myself some time to adjust, keeping in touch with old friends from work and meeting for lunch or dinner occasionally. I never considered myself a "people person" but the days at home get kind of long and lonely. This message board helps me recognize that I am not alone on this journey.

[Seasha]

Ah MGM, you are not alone (you too Canary), but sorry you had to call it quits. Thanks for sharing!

It's been 10 years since I was in your shoes (hard to believe) but I recall vividly how I felt at the time. It was a period of grieving mix with a sense of relief. Emotions all over the board.
My manager was partial the cause of me quitting. She was a micromanager and was constantly all over me even tho I prided myself for the quality of work I put into this job. I ended up hating her....

And yet, I knew I couldn't go at the pace that was required of me. Like you, my days off were recup/sleeping days.

After a time, and like Mamabug, I decided to volunteer in different places - on my own terms and not according to a stressful work schedule. I also took up a couple of hobbies that I always wanted to do, yet didn't have the time for. I met up with ex co-workers sometimes which helped the isolation.. I didn't even know about MSWorld, but I joined our local MS support group and made new friends.

Take all the time to let it all settle in and I hope you find different ways to feel fulfilled. Take care!

[RonPaulaD]

Wow! I am going through the same process right now. I went on STD in September and just transitioned to LTD. my first check is scheduled for early January. I too am trying to figure out what my new life will be like. I'm 56 years old and worked for nearly my entire adult life. I am dealing with mobility issues, so getting out to meet up with people is quite a struggle. I bought a new rollator that is easier for me to get in and out of the car. But I'm not sure what there is for me to do. We've sold our two story house and are moving into a townhouse with main floor living on December 21. But it's in a new neighborhood, so I'll need to find a new drugstore and grocery store. I still get a little weepy now and then, but it is brief. I'm hoping to experience these changes with grace and positivity.
Paula

[Jules A]

((MyGirlsMom)) I can't imagine what this feels like although suspect I will be in a similar position in the future and believe it is smart that you did it while still connected to employer benefits.

You had a good run and it is time for the next chapter in your life. I pray that you find as much peace and other interests like Faith and Seasha who have gone before us in this journey.

[Mamabug]

Over the years, I volunteered for a preschool, for Circle of Hope (works with poverty issues), in a first grade classroom, CASA, played piano at a nursing home, read to residents at a different nursing home, church (children's ministries and music), etc.

Oh. And, of course, MSWorld is another volunteer place.

Another project I took up is I'm working, somewhat slowly, at writing a memoir.

And, I'm glad enjoying grandparenting.

[Temagami]

I´m two years ahead of you on that life change. For me the relief of not having to juggle and drop the balls of work was the calm that I needed. Flares went from 2x a year to none. Started doing yoga and that has made a huge difference. Take this newfound time to care for yourself.
You are right, the LTD SSDI paperwork becomes a full time job. Check out Linda Nee´s blog before you start the process. She used to work for the ins. company and now represents folks applying for disability.
May you start 2019 with improving health and reasons for gratitude.

[oceanpride]

I think congats are in order here. You’ve made the right decision at the right time. So many even without MS stay at the old grind for too long. I’m self employed and am trapped for the time being but I know I haven’t got much more to give. I would like to have more time for family and friends
Quality time that is. Not too tired and too stressed time.
Because out side of work ,they say , I’m hearing, there’s this thing called life.
I’m hoping you can have a little of that now. You’re work and accomplishments have defined you. Now take it to the next phase.
Good luck and thanks for sharing.

[Myoak]

Reading through these posts I can see what sweet, wonderful, and loving people you all are. You are the source of inspiration for MS doctors, researchers, and caregivers. You are the dear, dear people who propel so much of my study and dedication to the well-being of those with MS.

Tears have an eloquence all their own, MGM. You are a sweet wonderful lady whose journey in life is taking a steeper climb to a higher pinnacle with a view you may have missed otherwise. I can only believe an amazing life will unfold before you on this new path. Have faith!

[pennstater]

I can relate as well. Reading your post makes it seem like yesterday. I have now actually been out 5 years. Just received forms for updates this week! And yes, filing for LTD and SSDI can be overwhelming. The paperwork at times seemed never ending.

It was an emotional time. So much of my identity was as a professional. I married late and never had kids. I liked the work I did and was good at it. I was in the tech field, so there were always periods of long days for projects and software releases. But I loved it. To go from a fast paced day to "what do I do today" was a big adjustment.

It took some time, I had my ups and downs. But it was the right decision. When you can't do anything but rest from working, and even then, can't bounce back enough for work, it is time.

My MS has been pretty stable since I stopped working. May be coincidence, but I think not.


It seems strange to say, but my quality of life is so much better now. I miss working, but love being able to be part of life again. I can participate with family, friends, hobbies, volunteer. It has to be all about balance still, but having the options open to me again provides a different type of fulfillment.

Lots of luck.

[MyGirlsMom]

Thank you!❤️

All of your responses were so kind and thoughtful...you truly brought me to tears! 💕💕. I have been struggling for several months but from the outside people would have no idea how much and how hard things are for me, both physically and emotionally.

All of your comments and shares just truly touched me. That you have been where I am and understand my struggle...I am so very grateful. (I have only a few friends that really sort of get it or at least try to.)

It is one week now since stopping work and of course, my work departure was going to be the magic “pill” so that I would feel immediately better. Unfortunatly I just don’t. I think the months of pain, muscle weakness and tightness in abdomen and legs along with a good dose of fatigue (mental and physical) is pushing me to my limits...however, I am smiling on the outside and keep going and trying to push through.

My job was fantastic in taking me “out of myself” and lately I have found myself having some good pity parties. It’s sad. Not at all where or who I want to be. I am trying to just ride it out right now and accept that this is where I am...and give it time. Just let it be what is.

Again, thank you all so very much! On Monday I will start working on LTD and SSDI. Not sure I will qualify though due to a preexisting clause...I will keep you posted.

Thank you for sharing and offering the gift of yourself to me....it is truly treasured and represents the spirit of the holiday season!

[LukeGriffen]

You are quite remarkable, 'MGM.' What you did ranks at the top of the stress scale, and I doubt most people would even talk about it. I admire you for not only what you did but for sharing so openly. I certainly won't bore you with all of my story, but it's quite similar. Well, it's similar but for sake of honesty, replace "Crohn's Disease" for the "MS" and that would be the reason I was awarded SSD and was forced to quit my job.

Had I been one minute late to work, I would have been "history" with my employer. I had gone the STD and was ready for the LTD (I had maxed out on the FMLA) but there was a glitch in that my regular MD had been out for a couple of months due to a freak blood clot that caused him to have his leg amputated above the knee! The other doctor who was "looking after Dr. "D's" patients didn't fill out the paperwork. There were other stupid mistakes on his end, too, so I didn't get the LTD. I admire you for tackling the SSD process application. I KNEW I couldn't probably do an adequate job so I used a lawyer. They were wonderful...I didn't have to do hardly anything. And the wonderful news in my case is that I was awarded SSD at the precise moment my first benefit was due. I have never felt so humble and indebted to the lawyer. And get this: I didn't owe them one dime! They wouldn't even let me pay for any expenses because of the way it happened.

I realize my situation was the exception to the rule. I am so fortunate. I've often thought of going back to work when I feel good. I mentioned this to my counselor and she immediately and emphatically said "NO!" I was taken aback. "Why," I asked? She said "You have no idea the difference in you since you are now on disability insurance. You were under so much stress before (and with Crohn's and definitely MS), but you're different now and to relapse now... that's the last thing one wants. I had two of my dear friends tell me the same thing. I knew it was true. Financially I could not afford to wait another year with no funds, either. I can say that I am at peace with my decision.

I recall my dad being TOLD he couldn't work any longer. He had dealt with MS since college, but back then they hardly knew what it was, let alone how to treat it. Everyday was a "new" adventure. His sister had MS, too. And get this: My baby sister has it! Chalk it up to bad luck, I suppose. My sister filled out her own paperwork and was awarded SSD. We're both on the same drug, lol.

My dad fought until the bitter end. The irony in his case is all his company had to do was to build a ramp. This was in the 1960's, though. His company wasn't required to. It was a blow to his ego, but he went on to an inspiration to most anyone he met.

I love what others have written to you on this post. One point, in particular, is that this was chosen for you. This is your time and you certainly need a rest! Oh do you ever deserve one. Sweet lady, you're worthy of a rest. Job well done and you will continue to do great things. You've inspired me, and for that I thank you. This is my first post here, I think. I actually was going to ask a question, but your post caught my attention. I hope you keep all of the readers informed with your new chapter in your book. It's definitely a "page turner!"

[pennstater]

It took awhile for me to feel better after stopping. Part of it, giving myself time to have a pity party and grieve the loss of my career. It is a loss, so like any other, it takes time to heal. Agree that while working, no time to focus on ourselves.

The mental adjustment was a hard one - realizing after awhile that too much time wasn't always a good thing. When my mind would race, all I could think of was Dr. Seuss' O The Places You'll Go! My mind would take me places I didn't want to go.

As for the LTD pre-existing exclusion clause, it depends on how written. Many don't exclude entirely, but invoke based on emloyment time with a company. Mine had a provision, but was only invoked if an employee for less than 24 months. After 24 months of employment, it was not applicable. So hopefully, you aren't excluded.

There is a separate employment forum where LTD is discussed. Likewise, Social Security. There is a volunteer attorney who drops by to answer questions as well.

Hang in. I promise, it does get better emotionally. It just takes time. Be kind to yourself.

[Jules A]

It seems strange to say, but my quality of life is so much better now. I miss working, but love being able to be part of life again. I can participate with family, friends, hobbies, volunteer. It has to be all about balance still, but having the options open to me again provides a different type of fulfillment.

I have copied/pasted this for future reference. It brings me comfort now and will likely be a lifeline in the future. Thank you pennstater.