Does this do away?

[Daisycat]

I am not sure if this will make sense to anyone but I am going to try to explain it as best I can…
Does anyone else feel like they have to do everything they dream of doing asap and can’t put off anything for fear we might not get to it?


For example


1. My excessive amount of tattoos and piercings I have got and am getting this month


2. Doing the fasting diet plus working out extra so I can be at my goal weight again- fasting bc I heard it is supposed to slow down/help/repair damage.


3. Going Bungee jumping and Skydiving in the same week


4. Working out for 15,000-20,000 steps a day while binge watching Netflix, since I need to get through my que.


5. Deciding you are going to try to do everything at work and be perfect so you are viewed as the most valuable person there in case something ever does get out.

Maybe I just need to get back to work. Vacations this long are giving me too much time to think….
But it is a fear of mine – I won’t be able to do everything I have on my “bucket” list so I need to do as many as I can as fast as I can. I just want to know if I am alone in this or if this is something that goes away eventually

[Jules A]

Initially I had a similar frenzied focus and drive but it was about changing careers so I could have more disability friendly options if needed and saving as much money as I could so I didn't become destitute.

It was exhausting and I rode that wave until I turned 50. At that point I accepted that I had enough of a financial cushion and regardless of MS or not my physical health would be declining going forward so I allowed myself the luxury of starting to enjoy the fruits of my labor before it was too late.

MS has prematurely advanced my age. I was in my 40s and 50s facing things many people don't get too worked up over until they are in their 60s and 70s. I have either become somewhat desensitized to this horrific disease or I'm deluding myself that I will be at peace with whatever happens because I'm not as terrified. Still terrified just not as much. I keep reminding myself I prayed for 10 healthy years and so far, knock wood I'm going on 15 so I really shouldn't complain.

[dm0329]

Boy can I relate to your post!

I don't know if it totally goes away, but I found that it definitely lessens over time. When I was dx when I was in my mid-twenties, I was "scared straight" so to speak. Fear is a great motivator, too! There were no DMT's back then, but four years later, a new MRI showed "tons of silent progression" and my neuro told me I was "lucky" THREE TIMES!

I started on Avonex (which I still continue today 21 years later!). Although I HATE needles, the fear of MS, has continued my weekly pokes! At this point, I consider Avonex the "silver lining in my MS cloud."

But, seven years after my dx, I wrapped up my both my bachelor's and master's degrees. I held several different positions with increasing responsibilities while I worked full-time and attended college part-time in the evenings. I felt the "faster I ran and the more I achieved" I could out pace this MonSter!

By my late forties, fatigue and cognitive issues nudged me out of the workforce. FWIW, stock away every penny you can while you're still working full-time, because the 24-month wait until you qualify for Medicare (when you are eventually awarded SSDI) will drain away just about everything you've saved. But, it's a blessing to have healthcare for life, I suppose. And being "low-income" now, I qualify for the LIS-subsidy for my Avonex too, so, again, another blessing in disguise!

Although now in my mid-50's, I still "look so good" but it took nearly 30 years later for me to fully understand "what all the fuss was about fatigue." I couldn't really understand it in my twenties, but in my fifties, I get it. . .I get it!!!

Over the years, I've found that MS is a detour, but not a stop sign!

[Cat Mom]

I found the complete opposite happened. I was diagnosed when I was 40 (2005) but had really bad ON when I was 38. Prior to dx I worked full time, had my 3 kids by age 26, maternity leave was 17 weeks then back to work. My ex-husband worked shifts so he wasn't around to help on weekdays, then we split up in 1998, the kids were 11, 9 and 7. Life was just so freaking busy... then MS happened. It forced me to re-evaluate everything, I just couldn't do it anymore, had to even stop working permanently.

By now I was re-married and also had 3 step-sons, younger than mine. I took great pleasure in having the kids come home for a lunch made by me (KD every day!), being there to help them with their homework instead of helping them at the dining room table while making/dishing out dinner, being there when they got home from school and their part-time jobs, getting to really know their friends... and appreciate them. We ended up being the house that all their friends came to, some "strays" even lived with us from time to time. I couldn't drive their butts around due to MS (eyes) so that's how it all started.

Now some of them live on their own and the others are grown ups and I have nothing but time so now I fill a lot of my days with things that bring me pleasure, such as crafts, and walking my dog and baking (and eating).

Maybe I should be trying to fit in more stuff from the bucket list but I find trying to accomplish them to be really stressful. I don't know why but I think they're seen as things that I HAVE TO do vs. the things that I WANT TO do.

I don't know, I guess it's whatever works for us as individuals. I am envious of those of you working towards bigger goals, keep up the great work!

Cheers!
Jen

[Jules A]

Maybe I should be trying to fit in more stuff from the bucket list but I find trying to accomplish them to be really stressful. I don't know why but I think they're seen as things that I HAVE TO do vs. the things that I WANT TO do.

I don't know, I guess it's whatever works for us as individuals. I am envious of those of you working towards bigger goals, keep up the great work!
Cheers!
Jen

Jen I bet your description of having time for your children and their friends is someone's bucket list item! I am envious of your approach and suspect you have more inner peace too.

[Daisycat]

Jules –
I need to get better about saving money. Right now I am having a bad habit of trying to do everything I can asap just in case. I had to take out a cash advance on my credit card – which isn’t terrible I get paid Friday and will pay it back, but realizing I spent an entire paycheck on piercings and tattoos was depressing. And sadly I already put a deposit down on one more I want , but at least by then I will be caught back up.



Part of me is considering applying for the assistant PM position because it would be a huge raise, but I would also be miserable. So I am not sure what I will do about that…. But more money is good when thinking long term , but happiness with your job is also important.


dm0329
I am ready for this to lessen. I stayed at work late today making sure everything was perfect. ( Of course I did just get back from a vacation and I didn’t exactly come back to a organized surgery area… and that is my pet peeve when someone else does surgery.)



I am making lists of non surgery related things I need to learn/review about since school was a long time ago in case I go for the assistant PM. I’ll see if I actually start studying it though. Right now Netflix and my regular TV shows sounds better.



Thankfully I don’t have a fear of needles. I do love the auto injector though. I could never get the manual ones down since I am so used to giving vaccines as fast as possible since with animals you have a short window before they get annoyed. I tried to go slow… but I just couldn’t get it down.

I am glad you seem to have a medication that is working well for you.



I have considered my masters but at this point I don’t see it as a benefit. I don’t know if I can change jobs since some LTD benefits at some companies don’t accept people with pre existing conditions and going without insurance for several months terrifies me. Plus my career choice isn’t known for its high pay and benefits so I consider myself lucky to have a job that does have both those things.

It is a 24 month wait for SSDI or Medicare? That just seems unacceptable. What do they expect people to do until that time?



I am glad other people understand this. I felt like I was crazy for being this way.




Cat Mom

I am defiantly one of those people who is trying to do everything from my bucket list ASAP. I can’t wait to go skydiving in a few months. I think maybe being obsessive about all these things gives me something to focus on… at least for a short time

[MarkLavelle]

Does anyone else feel like they have to do everything they dream of doing asap and can’t put off anything for fear we might not get to it?

I've felt like that twice (in 1998 & this year) when I learned I had metastatic lung cancer, but it didn't last more than a few months (in terms of intensity/urgency, at least). Maybe it's just too hard to maintain that emotional intensity, but I mostly think that there just isn't much point when the only certainty is that I will eventually die (possibly by choice). Why should it matter what I've done by then (as long as I haven't been evil)?

My reaction to the MS dx was nowhere near as intense, but I did get pretty deep into the weeds in terms of expecting the worst. Not that the worst would happen soon, but seriously thinking about things like how my bathroom could best be remodelled in preparation. Now, my MS has been so consistent since 2011 that I only worry about how it might interact with my cancer and/or treatments...

[Daisycat]

I’m sorry about your recent diagnosis. And for what you’ve done... I agree as long as it’s not evil no one should judge you

I pretty much think about this disease every single day and everything that could happen and how I can prevent it.

(Like working 10 times harder than anyone else , or doing crazy things, or taking my fasting to a mild extreme)

part of me hopes it goes away and part wonders if it’s a good thing

[MarkLavelle]

I’m sorry about your recent diagnosis.

Much appreciated. I'm a generally stoic guy and don't like to talk about it much, but the people on this forum make me feel comfortable enough (3 cheers for MSWorld).

And for what you’ve done... I agree as long as it’s not evil no one should judge you

'Evil' is a pretty clear line for most of us, but my point was mainly that I've decided not to judge myself for what I have accomplished or not.

part of me hopes it goes away and part wonders if it’s a good thing

I can tell you for sure: It's not a good thing! I know some get around to thinking that, but I can't imagine it.

[Jules A]

I've felt like that twice (in 1998 & this year) when I learned I had metastatic lung cancer, but it didn't last more than a few months (in terms of intensity/urgency, at least). Maybe it's just too hard to maintain that emotional intensity, but I mostly think that there just isn't much point when the only certainty is that I will eventually die (possibly by choice). Why should it matter what I've done by then (as long as I haven't been evil)?

My reaction to the MS dx was nowhere near as intense, but I did get pretty deep into the weeds in terms of expecting the worst. Not that the worst would happen soon, but seriously thinking about things like how my bathroom could best be remodelled in preparation. Now, my MS has been so consistent since 2011 that I only worry about how it might interact with my cancer and/or treatments...

I'm also sorry to hear about your cancer diagnosis. I have always thought we deserved a free pass on further health crisis but unfortunately it doesn't seem to work that way. Please keep us posted.

I've always thought myself fortunate in that #1 I'm not that attached to this lifetime and #2 at every age I have felt as if I lived an exceedingly full life at that point so if I were to croak I really can't complain. Although I'd rather it be later rather than sooner I'm not afraid to die, more afraid I won't be able to execute my intent not to languish.

[REG53]

Yes, I can relate. I was the same way when I got dx. I went out and brought a 10pc dining room set. I called my sister-in-law from the store and the first thing she said was "is your husband with you" my reply was "No".

I have been sick with ms sx's for the last few months and the one day I felt good my husband dropped me off with my scooter to shop. I found a Christmas tree I really liked and called him to come and buy it. I wanted to put it up that day and hang pumpkins on it for fall and then Christmas decoration.(LOL) I just felt excited because I had a good day and wanted to do everything at once.

No, I didn't get the tree.

[trevvian]

Mark, I too am sorry to hear of your new dx.

I think we all deal in our own way according to our own priorities. But I suspect going to an extreme is common.

DaisyCat, I'm the opposite of, and the same, as you. Meaning my priorities are different, but I'm more focused on them now. Probably also would benefit from more balance. I decided early on that if I were someday disabled, the memories of skydiving or bungee jumping would bring me small comfort while sitting in a crappy apartment, dead broke. I'm also more in the vein of, "bucket list = effort."

So I went all out in cutting back expenses and saving money. Since 2015, I have been saving about 40% of my income (after taxes & charitable giving.) I now think I could live comfortably on disability payments from private LTD. Now I'm working to save 2 years of expenses via iBonds so I have inflation-proof emergency funds for that 24 month wait you mentioned.

Unfortunately, this means I'm NOT working on my bucket list. I'm NOT getting tattoos. And I'm NOT really taking care of my health because I work too much.

If you think that someday you will look back on your experiences and be glad you got the piercings, tattoos and live your bucket list... then I say, "go you! You do you." You know yourself better than anyone else.

Statistically, people regret what they DON'T do. What you ACTUALLY did becomes a part of your story and makes you who you will become.

I'd suggest you get a handle on your finances, because that will make your life easier. Just like I'd suggest that I myself ought to take a lesson from guy you and take better care of myself. Balance is good.

I suspect the urge to do it all will subside with time. One thought on LTD, insurance and jobs: I stuck with a good job to keep my insurance. They laid me off. I got a better job, also with good insurance. Most group LTD insurance won't deny you for pre-existing conditions, but will have a 'look back' period from when you get hired to when you can make a claim. Mine is two years. I have been at my job 18 months now. They just announced a restructuring. I will likely be let go next year. LTD is a crapshoot, so it may not make sense to stick with a job just for that.

[Jules A]

LTD is a crapshoot, so it may not make sense to stick with a job just for that.

Question for you or anyone in the know. It is my understanding that LTD only pays until you are approved for disability is that correct?

The job where I get my health benefits is wearing on me, not for MS reasons, but just cause. The health benefits are very good and I'm afraid of resigning and having my health hit the crapper. However if the only thing I'm at really at risk of losing is STD and then LTD which would be what 2.5 years total? If that is the case I'm not sure if it is worth staying at a job that is irritating me.

Your thoughts?

[msgijo]

Question for you or anyone in the know. It is my understanding that LTD only pays until you are approved for disability is that correct?

NO.
LTD will pay you a % of your base pay until your 'normal' retirement age. I believe that average is 60%. When you reach retirement age SSDI (disability) stops and SSI (retirement) takes over while your LTD stops.

[pennstater]

Question for you or anyone in the know. It is my understanding that LTD only pays until you are approved for disability is that correct?

The job where I get my health benefits is wearing on me, not for MS reasons, but just cause. The health benefits are very good and I'm afraid of resigning and having my health hit the crapper. However if the only thing I'm at really at risk of losing is STD and then LTD which would be what 2.5 years total? If that is the case I'm not sure if it is worth staying at a job that is irritating me.

Your thoughts?

You have to read your policy. Mine pays til 65, but SSDI benefits are offset from the monthly LTD amount. So for simplicity, if my LTD award was $2000/month and SSDI was $1400/month, LTD then only pays $600/month. But it is all in the wording of the policy.

My LTD paid the full amount while I appealed SSDI. Once SSDI awarded, and the paid the back award, I had to reimburse my LTD carrier. Just an FYI.