Life update.. waiting.

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Well, doctors appointment tomorrow was very good.. New PCP is definitely on team me. Had to get him to fill out paperwork for short term disability to continue and he insisted on filling it out to keep me out of work. Now I'm in a waiting game with short term disability to transfer me over to there extended disability after my short term runs out (that can be extended for up to 8 months at 100% of my pay.. but it's hours baised not months baised so they have to figure it out). The full time is at less then 100% but can last 18 months.

Big thing is that my new PCP feels like I will have to be ready to file for SSD because I will be in physical therapy for a year at least..and will have more testing and precedure done within the next few months.. my care team is deciding on what the next step is for my care and it may be test and or another surgery..

I am at a loss with all of this.

I never figured that I would be in this bad of shape after everything I have been through.

Big thing they want to find out is if the damage is because of surgery. My physical therapist wants me to get a test that will show what muscles in my hole large intestine are working and what are not.

At this point work knows that I will be out for a while and my HR department is getting my FMLA changed from intermittent to full time..

Not okay with that..I finally had a job that I liked, working with people who respected me and caired. Now I have to start over when I go back....if I can go back when this is all said and done.

I have my degree and I will be trying to get back in school once I have a better outlook.

Don't what to risk it now.

Worst thing is that I put on about five pounds since this started... got to get back in shape.

All in all I wish this was not my life right now but I will get through this no matter the outcome..

 

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Good for you for sharing, asserting yoursdlf and being determined and realistic. Still a lot of good life out there

 

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ThatFlGuy, I'm so sorry you're having to go through all this. It seems that one thing just gets piled on another and you're getting overwhelmed with anxiety. It's hard to keep reminding ourselves that THIS IS TEMPORARY! And then the inactivity causes the weight gain. It's a vicious circle/cycle. I listened to my old vinyl recording of Earl Nightingale's "The Strangest Secret" today. It is a great talk that encourages me to keep going, "putting one foot in front of the other" as my deceased husband used to say. Just keep going.

 

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I’m very pleased to read that your new PCP is supportive and attentive. I’m also glad you’re coming to terms with the severity and potential longevity of your condition.

Fortunately, right now because of COVID, most jobs and classes are conducted from your own home, so you may be able to find some occupational and educational success and satisfaction that way, once you have some more tests and have a better picture of how your next year may look.

It’s important to most to feel “useful” and to actively contribute to society. Right now I think it’s just fine - ideal, even - to be okay with your “job” just being useful to yourself, via taking care of these health matters. These kinds of processes *are* at least as tiring as traditional work, and often more time-consuming. So try to feel like you *are* doing a job. You have the rest of your long life to work for someone else, but right now, I, for one, give you permission to let your job be taking care of your health. That’s plenty of work.

Hope this helps you feel a bit more okay with your time off.

 

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Really glad you have a PCP Who is able to be a practical support.
Very sorry you are missing on work and its structure but it seems like you do need a proper clear path to health and that's a job in itself.

 

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Hi FLGuy, I think it's great news you have a PCP who is really on your side! Along with your physical therapist who is also a wonderful ally for you, I think you have a good setup for finally getting all the good help you deserve! That will help you as you deal with the need to get your health back in order. I like what Snow said about your job is to take care of your health and let me, also, "give you permission" to make your job be taking care of YOU! I think that is the God-given reason you are being given this time off. He wants you to be well!
And Rita N's advice of just keep putting one foot in front of the other is very sound advice indeed.
And you know, we will be there with you every inch of the way as you do that!

 

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Well, doctors appointment tomorrow was very good.. New PCP is definitely on team me. Had to get him to fill out paperwork for short term disability to continue and he insisted on filling it out to keep me out of work. Now I'm in a waiting game with short term disability to transfer me over to there extended disability after my short term runs out (that can be extended for up to 8 months at 100% of my pay.. but it's hours baised not months baised so they have to figure it out). The full time is at less then 100% but can last 18 months.

Big thing is that my new PCP feels like I will have to be ready to file for SSD because I will be in physical therapy for a year at least..and will have more testing and precedure done within the next few months.. my care team is deciding on what the next step is for my care and it may be test and or another surgery..

I am at a loss with all of this.

I never figured that I would be in this bad of shape after everything I have been through.

Big thing they want to find out is if the damage is because of surgery. My physical therapist wants me to get a test that will show what muscles in my hole large intestine are working and what are not.

At this point work knows that I will be out for a while and my HR department is getting my FMLA changed from intermittent to full time..

Not okay with that..I finally had a job that I liked, working with people who respected me and caired. Now I have to start over when I go back....if I can go back when this is all said and done.

I have my degree and I will be trying to get back in school once I have a better outlook.

Don't what to risk it now.

Worst thing is that I put on about five pounds since this started... got to get back in shape.

All in all I wish this was not my life right now but I will get through this no matter the outcome..

I pray that things improve for you. I too have been dealing with the uncertainty of dealing with incontinence in the workforce although I am in a good situation being able to work from home in the IT field. Wearing diapers to work can be unnerving. I have been in the mode of coming to terms with wearing diapers due to my nervous system damage affecting my bladder and bowels (the worst kind of incontinence by far although not as often for me) and I am am about to be tested for possible MS. I feel we need to all remember we aren't jokes or bad people for what is going on in our pants. Hate to be so crass, but there it is.

Good luck to you, you have a lot of people who know your struggle and are thinking about you.

 

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@caseywor We hope you don’t have MS, but it’s a good idea to be tested for it sooner rather than later (note to myself: your doctor told you to get that done three years ago, so practice what you preach, and get it done). My bloodwork and brain MRI don’t show MS, so the test I’m resisting is the spinal tap. I’ve had a lot of needles stuck in my back and I don’t care for a repeat, hence, my avoidance of the test. But I’m tired of wondering.

 

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@caseywor We hope you don’t have MS, but it’s a good idea to be tested for it sooner rather than later (note to myself: your doctor told you to get that done three years ago, so practice what you preach, and get it done). My bloodwork and brain MRI don’t show MS, so the test I’m resisting is the spinal tap. I’ve had a lot of needles stuck in my back and I don’t care for a repeat, hence, my avoidance of the test. But I’m tired of wondering.

A spinal tap is the one I am resisting the most. I can’t stand the thought of it. Do what you need to do though. Good luck!

 

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ThatFLGuy: Having a workplace you like, with co-workers you like, and a workplace that respects you? That is a BIG thing. I waited 20 years and took a cut in salary to get that, once. Just work as hard as you can to get back there. Maybe let HR know how badly you want to work there, when you can. Maybe take relevant schooling. No learning is ever wasted. I think the FMLA (Federal and some States) has a provision for returning, though maybe not at same level? There are some time limits, or used to be.

 

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Hi Snow, is the most definitive test for MS a spinal tap? You say bloodwork and a brain MRI shows you don't have MS. But is there a reason to believe, like symptoms, that you may have MS?
But if you're tired of wondering, I know you will find a place that has the most qualified people to do the spinal tap. If it were me I would definitely insist on literature that tells about spinal taps and MS so I can know what to expect. I really hope you have no reason to suspect you have MS and I know you will talk to your doctor about it. And you know we'll give you all of that needed support!

 

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Yes, bladder incontinence, severe back pain, and three kinds of cancer within a few weeks of one another plus a bunch of other symptoms like brain fog, noun failure, et al., are all in common with MS. Yes, it’s likely I broke my bladder snowboarding. But it’s not like there’s a test for that. The timing is right. But the fact that so many things went wrong in my body and brain all at once, could be MS. I’d rather know than not know. I should be maxing my out-of-pocket-max any day now, once a couple more insurance claims are finalized. Then maybe I’ll get it done. And yes, I have read a bunch about the dangers of a spinal tap. There are many, and some are extremely severe. It’s the pain that bothers me the most. I know from back injections that my back doesn’t respond to local anesthetics - unfortunately.

 

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Snow, it sounds like you've been an adventuresome person, snowboarding is not for sissies! I hope you do get some clear idea of a diagnosis. Not knowing is the hardest part.

 

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@ritanofsinger My diagnosis is Neurogenic Bladder incurred when I was snowboarding at 20mph over a cliff area, and accidentally nearly flew off a cliff, so I slammed down on my butt, to brake my fall with my spine. I landed immediately on a pointy, hard piece of granite, then I promptly proceeded to slide 20 feet down the cliff, on my butt. I demolished all disc material in my lumbar spine (where bladder nerves connect to the brain), and now my spine is self-fusing via a scoliosis curve of 17’ to the left. My back hurts badly, constantly, but self-fusing is supposedly better for a person than having to have a rod inserted down the spine.

I permanently severed most of the nerves to my bladder in so doing. The point of impact was slightly to my left, as are our female bladders. I hit so hard, my left buttcheek split in half horizontally. Very ugly.

People say I’m “lucky” to be alive. My insurance company called the accident “catastrophic.” There’s nothing “lucky” about incontinence and bedwetting and chronic back pain. But I *am* lucky I’m not paralyzed.

I still keep a season pass and a locker at at the steepest ski resort in the world (Snowbird, here in SLC), though I no longer snowboard alone in that particular cliff area, and I go much slower now. My average speed was 43mph for years. Now it’s more like 15mph and I tire quickly. I used to ride 8:00 a.m. - 4:30 p.m. 100-120 days per year (translates to: hardcore). Now I’m lucky if I can handle 15 days, for a few hours each day.

Snowboarding in a wet diaper is cold and gross. Going back to a lodge and disrobing all the snow gear to pee every 5-20 minutes, sucks. And no, I’m not going to scar my bladder with catheters at my young age. My doctors refuse to be a part of that.

My favorite thing to do in life became my greatest betrayer. It’s very confusing.

I have a full-ride scholarship with Wasatch Adaptive Sports. They help me overcome the mental and physical hurdles to try to be able to keep up with my sports. Sometimes I get up to the top of the mountain and I just lay down and cry because I’m so scared, I can barely get back down. That was a brand new sensation for me at age 39. I love to be on top of mountains, having grown up next to some of the steepest, tallest mountains in my backyard.

One of the primary components of my identity was annihilated by that very activity, on 1/14/15. Oh well; shit happens. Life, happens.

 

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It’s all the other dramatic things that happened in the same timeframe to my body, that make my brain neurologist think I may have MS. I’ve had 18 surgeries in five years.

 

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Snow -- what a horrible thing to happen to you. And I admire you for even going back to the sport. People told me that I would be too afraid to drive after my car accident but after a month in the hospital I grabbed my crutches and drove again. The attitude of not succumbing to defeat is not something that everybody has. We are lucky that we don't accept defeat. And when our physical limitations call off the show we can start over with something new. We are faced with so many challenges in this life and, yet, what's the alternative? I get tired of keeping on sometimes but I choose life over death and keep plugging on. And that's the way you are.

I don't know your age, but I do know that your accident will probably affect you in now unknown ways in years to come. I was 18 when I slammed head-on into a (fortunately) empty gasoline truck on an icy bridge and shattered my hip. I was in traction for a month with my left leg taped up from the toes to the knee. A cord was attached to the tape with two bricks at the end hanging off the bed so that I couldn't completely turn over. When I recovered I thought it was all done with. But when I was in my 50's I started having back pain.

Then after getting back exercise therapy and the pain getting worse something that I said made the doctor have an idea.
She ordered x-rays of my left hip and it clearly showed I had bone on bone and the bone was being rubbed away. Bone density tests previously had shown that I had the bones of a 20 year old in my legs but my back looked like a 70 year old. The right side of my spine is as hard as a board. But all of this is a result of that accident many years before and how I tried to not limp to compensate for the lengthened leg and it twisted my pelvis.

However the pain in my back has progressively gotten worse so that I have to use a rolling walker to walk more than 20 feet and I have to sit for a few minutes before going on. Well I'm 83 now so I'm not going to quit living just because I hurt. In a bizarre way I can say I see the light at the end of the tunnel.This trip is temporary. I'll be gone before forever! Which is a thought to ponder.

I'm thinking how excruciating your pain must have been and continues in other ways too. Oh and my response about the bed-wetting device was meant for the person who recently signed on as 18. Not meant for anybody with injury caused bed-wetting.

If I was still a Christian I'd say I would pray for you but now I'll just say that I'll hold you in my heart.

 

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@ritanofsinger What a lovely message; thank you! Your Christian comment made me laugh heartily! I’d rather be held in your heart; thank you very much!

What a dreadful extended problem of it you’ve had; sounds excruciating! Good for you for driving again! I’m sorry you had that car accident all those years ago, and I’m also glad that truck wasn’t loaded!

I’m 44 and was 39 when I fell down the cliff. I don’t actually regret it because all the snowboarding that led up to it was such a divinely passionate, spiritual experience. Snow is nature’s lace. I can never get enough of it. I suppose when I’m 70 (if I get that far!), I may regret my skiing and snowboarding years, but I doubt it. I started when I was 12 and have made some stunning, lifelong friendships via the chairlifts. I met my ex-husband via the slopes, and even though we’re exes, we still talk here and there, no hard feelings, no regrets. Our split was amicable and mutual.

I’m thinking this may be my last year with the ski pass. It’s such an expensive sport, with so much gear to buy and stay on top of! And I’m tired of having surgery, just had my right knee done six weeks ago and my left knee done two years ago, already need total replacements, trying hard to make it to 50 before I get those. I’ll see how this season goes. The resorts *are* planning on being open during The ‘Rona, but with cases skyrocketing locally, I’m expecting the governor to shut us down again soon. I hope the ski resorts can stay open, though, because it’s an outdoor environment in typically 10’F weather where germs die, and anyone out there without a mask is rare in normal years, so hopefully people will follow the rules and keep the lifts running for everyone.

As for now, we’re still trapped under this forsaken high pressure we’ve been under since June 15. Zero precipitation. The CA and NV wildfires create weather patterns that block low pressures from being able to reach us. I hate it. We had the hottest August, September, and already the hottest October on record. On average we have two days in October over 80’F. We broke that on 10/3! Now it’s the 5th and no change is anticipated for at least another week. I’m ready for the snow (then again, I always am!).

Here’s hoping it’s cooler and more refreshing where you are!

 

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Snow --- I lived in the mountains of Colorado for 10 years and loved it. My husband and I would close up our motel business and take midnight walks on the crunchy snow-impacted streets. We were above 9,000 ft. And the summers although quite short were wonderful. We took early morning bike rides to a ski resort and once did a bike ride over Vail Pass, which was exhausting.

But we did get tired of having to deal with shoveling snow. We seldom experienced colds or any flu and what I liked, no spiders! But we sold our business and moved to Albuquerque. After living in a few different areas of the U.S. I like this city/area best of all. Everything about it. All of my kids eventually moved here but one moved to Alaska later. And now she has moved to Arizona.

We here in Alb. have had some smoke from the western fires but with a couple exceptions it hasn't been bad. The balloonists are gearing up for their annual Fiesta and seem not to be concerned about the air quality.

I doubt that you will regret your snow activity, everything is an educational experience, you can learn, accept and go on. Have you thought of writing your life story? I urge everyone I talk to who has a story to write it down, share it with others. You never know how your story will impact others who are struggling. When I homeschooled my grandchildren I read them stories of people who had overcome obstacles in their lives. I didn't want any of the children to say "I can't do....whatever."

I'm raising the last of my grandchildren who will be 18 in November. I have cared for her since she was 3 months old. She is transgender and we have dealt with particular social difficulties because of her gender identity. She is a very intelligent, responsible, confident person and has been working for the last year. She takes good care of me too, housekeeping, preparing some meals, doing my errands and driving me wherever I need to go. She doesn't lack for a social life either with long time friends who love her. Forty years ago, I would not have thought my life would encompass what worked out. It's been an interesting journey.