Fitness for the physically challenged, anyone?

[Maryruth]

I have a (binign) tumor growing in my back and lower spinal chord area, and am on a regimen of pain killers that tends to be somewhat sedating.  Aqs if it isnt difficult enough to get motivated to "Be all that I can Be!"  LOL.  Are there any other people out there struggling with chronic pain (for any number of reasons, such as fibermyalgia, post diabetic neuropathy, other neuropathies or neur radiculopathies ) and who might be interested in helping each other "over the hump" to stay as active as we can?  If you fit the bill, then you know, as I do, that being active and routinely walking, doing aerobics or pool therapy can make a world of difference in how any day goes, but it is getting out of bed that is the hardest part!  Anyone else? I could really use some encouragement from someone who knows a bit more firsthand what I'm going thru while I try to stay active (and awake) and useful during the day!  Oh yeah, and who is also perhaps trying to shed a few pounds along the way...

[shawni]

Hi @Maryruth. Sorry to hear your pain. How long you had been suffering? What is the doctor's advise on this problem? Taking pain killers will not bring any good and there will be more side-effects in your body in later stage. I am new in fitbit since last month. I am trying to walk 10,000 steps daily but average is 7,500 steps 🙂

[Maryruth]

Hi Shawni--

Actually, I have lived with tumors growing in my back now for my entire life--56 years.  In fact, the pain killers are not so much for the tumors necessarily, but for the post-surgical lower lumbar radiculopathy I have since the removel of about 90% of the tumor in 2008. At that time it had grown to about 12" long, 8" wide, and 3" thick. It was, in fact, a "giant" tumor growing out from my spinal column.  By the time they were able to do the surgery to remove as much as they could get at (it is in my spinal column, and has dissolved the vertibrae in my lower spine to encase itself in the bone--it has restructured my spine and the earlier spinal fusion that was done in 1979 following a previous surgery to remove (80% of) it.

The tumor I have is a ganglioneuroma. I was born with a rare form of childhood cancer (a neuroblastoma) in 1958 and after the cancer was discovered when I was 8 weeks old (and it already the size of about half a grapefruit in my abdomen) The tumor was surgically removed by a talented surgeon. Unfortunately, in 1958, there were no known cases of children surviving this type of tumor, and they were uncertain how to proceed. Since the next step in an adult with a cancerous tumor removed would have been, in 1958, to give radiation treatments, they went ahead and gave me a series of radiation treatments. I was the first infant that the specialists at UCLA had ever seen live thru this cancer, and the first they knew of to receive radiation treatments as an infant.

Unfortunately, what we now know, due to the survival of several other children who were thus treated, a neuroblastoma should NOT be irradiated, because it apparently then produces a ganglioneuroma where the residue of the neuroblastoma was. And as I grew, so did the ganglioneuroma...unfortunately, even after I stopped growing, it still grew!

As to the pain meds--without them, I cannot walk. I have numbness in both legs and feet, with my left foot being nearly completely numb.  The radiculopathy, like diabetic neuropathy, is quite painful.  In addition, since my spine was first fused (L4 down thru the entire sacrum) in 1979, I have pretty intense facet syndrome.  (The facet is where the virtibrae above the fusion takes all of the strain on flexing or trying to bend the back, since it is the first place in the spinal column can bend,--anyway, my is bone on bone with absolutely nothing in between--the cartilage has long since been worn down...)

The good news is, however, that despite my complaining about the side effects of the medications, I am fully functional on the medical regimen I am on.  For example, for the past 3 days, I have gotten up by 8:00 am, exercised for twenty minutes to an hour, run errands, cleaned house, cooked, read, spent time helping a friend learn to use the internet, taken my visiting brother sight-seeing, and gone to bed by about ten or eleven each night.  Yes, the medications are sedating--but I counter with methylphenidate for the drug induced narcolepsy and caffein as needed.

In addition, I eat mostly organic and about 80% vegan--but I do sometimes include (local, Hawaiian waters) wild caught fish, free range island chicken eggs, and occasional island grass fed beef (We have very happy cows here, and there are no feed lots! I also use raw organic and free range milk products occasionally, such as raw organic cheese)

I have tried several times to cut down further on the medications, and I do OK for a day or so (while there remains some in my bloodstream) but usually by the end of the second day or the beginning of the third day, I can no longer walk due to the pain in my back and feet and legs.  And, I also know that there are many others out there like me, who are functional on meds, but not off of them.

None-the-less, anyone who is functional on meds that I know, hates the meds and wishes they could be off of them!  And most chronic pain patients have good days and bad days--that is why I was hoping to find a few other likeminded folks on this furum, so that we might be able to encourage one another, knowing the difficulties that the chronic pain brings into the picture for those of us on medications or struggling with physical disabilities--

Wow, I bet you maybe werent looking for a book, huh?

Anyway--the most intense pain has been since the major surgery that was on January 25, 2008.  I was at Johns Hopkins in Baltimore for over 60 days--and then unable to walk for over a year, until I paid hugely for some hand fitted carbon braces, that 'taught' me to walk again!

[Taote]

I am essentially wheelchair bound for a condition called dysautonomia and a heart arrhythmia stemming from traumatic brain injury, and I also have debilitating spine and knee issues for which I receive a host of treatments, including pain meds, which I try to only take if I need to be functional or just really need a break from the constant pain.

The dysautonomia and heart arrhythmias may end up being a deal breaker for staying fit.  I am wearing a 14 day heart monitor now because as I've ramped up the little bit of physical work I can do, I've been having more syncope episodes (fainting or near fainting with uncontrolled falls).  

So to say it's an uphill battle is an understatement.  BUT I am throwing myself at it EVERY day.  I so did not want to go strong today for my workout, but I did, and yep, I had two distinct near syncope episodes with heart rate falling over 100 beats per minute within a matter of seconds.  And you know what?  My husband propped me up, then helped me up, stood watch for awhile to make sure I wasn't going down again, and I kept going to the best of my ability for the rest of the workout, pausing whenever I needed to.  I've lost 27 lbs. since December 26th and I've managed to keep and even grow a little muscle mass.  

It CAN be done.  Figure out what you CAN do instead of dwelling on what you can't (that was super super hard for me - took a long time to learn it and sometimes I have revisit it).  Work with your Doc, a Physical Therapist or a personal trainer to lay out a plan.  As an example, my medical team's strategy right now is alternating steroidal and lubricating injections for my knees.  This gives me short windows where I can incorporate types of workouts I couldn't do without them.  Which hopefully feeds the cycle of muscle gain, weight loss, more muscle gain, etc.

Good Luck!

[Taote]

Pretty inspiring, Maryruth.  I'm sorry for what you've endured, and you as well Shawni.  Good luck to both of you.  

[shawni]

@Maryruth Thank you for sharing what you had gone through. You are soooo positive and strong. I had seen a few people with walking and standing problems and it is soo amazing to hear their story and how they successfully move and walk again. Seriously, I would like to help you further mentally and physically. Let's be friend in fitbit and we can encourage more.

@Taote Thanks for sharing your story too. Are you still on wheelchair? What is your goal for this year?

[Taote]

Yep, in the wheelchair most of the time.  Always when I leave the house.  When at home I use a rolling walker where my wheelchair won't go and spend a lot of time in my adjustable bed (it's often the only place I can be truly comfortable).  

When I work out it's either reclined in my wheelchair or sitting on the edge of a taller chair with my husband supervising.  Or on the floor on one of those really well cushioned 5" thick mats.  

[Maryruth]

Taote, f I may be so bold, from what does the TBI stem?  You sound like in many ways (minus the heart arhythmias) you are where I was several years ago.  The Hawaiian weather and the pool have been so good for me here, allowing ms to workout 5-6 days a week 'easily' (no snow, not rained out, etc. most of the time)  So I was wondering how long you have had the soliloquy from the TBI? because you are very "matter of fact" about it. I remember that npart of the TBI--the apathy...knowing I was [my word was: 'gorked'] but not really concerned nor caring too much about it.(in my 'former life' I was an avid bicyclist, and my husband and I were hit by a truck on our tandem while touring with friends  outside of Telurid,CO, and I had relatively mild TBI in addition to a broken collarbone and a totalled tandem!)  Anyway, I'd like to hear more of your story-- and I would like to friend you if we are not already linked as friends.  I really do know the frustration of not being able to do most of what well-meaning people suggest, and then trying to go forward and get the pearls of advise from out of the dross...(Excuse the mixed metaphors)

It sounds like you are blessed with a good husband and blessed with a positive attitude--good for you! And thanks for the positive encouragement!

[Maryruth]

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Taote wrote:

I am essentially wheelchair bound for a condition called dysautonomia and a heart arrhythmia stemming from traumatic brain injury, and I also have debilitating spine and knee issues for which I receive a host of treatments, including pain meds, which I try to only take if I need to be functional or just really need a break from the constant pain.

So I am wondering, how do you rate your pain off the meds?  My spinal pain is still too high (a 6 or 7) off the meds for walking, but I might be able to be off of them sometimes--and for how long do you have to be medication free before the fog begins to clear, do you think?  I know everone is different in their response to medications, but I am none-the-less very interested in the part about "being functional" verses being in "constant pain."

The dysautonomia and heart arrhythmias may end up being a deal breaker for staying fit.  I am wearing a 14 day heart monitor now because as I've ramped up the little bit of physical work I can do, I've been having more syncope episodes (fainting or near fainting with uncontrolled falls).  Yeah, I can imagine that that woukkd make working out difficult. One of my girlfriends who I work out with in the pool has heart problems--I know she likes the pool because she can work at her own pace, get a good workout, and not have to worry too much about her heart...  

So to say it's an uphill battle is an understatement.  BUT I am throwing myself at it EVERY day.  I LOVE this!

 I so did not want to go strong today for my workout, but I did, and yep, I had two distinct near syncope episodes with heart rate falling over 100 beats per minute within a matter of seconds. 

 And you know what?  My husband propped me up, then helped me up, stood watch for awhile to make sure I wasn't going down again, and I kept going to the best of my ability for the rest of the workout, pausing whenever I needed to.  I LOVE your husband!  :-))

 I've lost 27 lbs. since December 26th and I've managed to keep and even grow a little muscle mass. Wow, what an inspiration--good for you!  27 lbs. since Dec 26th is amazing to me! You Go Girl! (I noticed one of the rules for these correspondances was that I avoid using caps and avoid exclamation points--but I use SO many of both, I really AM being reserved!) 

It CAN be done.  Figure out what you CAN do instead of dwelling on what you can't (that was super super hard for me - took a long time to learn it and sometimes I have revisit it). Yup, Yup, Yu-up!  Work with your Doc, a Physical Therapist or a personal trainer to lay out a plan. CHECK _/ As an example, my medical team's strategy right now is alternating steroidal and lubricating injections for my knees.  This gives me short windows where I can incorporate types of workouts I couldn't do without them.  Which hopefully feeds the cycle of muscle gain, weight loss, more muscle gain, etc. (Hmm...a medical team, what a novel concept...gee, on this Island there isnt even another Neurologist besides my husband, so I see the neurosurgeon from Johns Hopkins every other year and try to keep up on the latest readings on pain management and on radiculopathies & pain & exercise & activity...)

Good Luck! And, as for luck, *I certainly see that this journey has had major spiritual ramifications. I cling to God on the days I am unable or at least feel unable to put one foot in front of the other and "just do it."  Anyway, *I often thin this path was 'chosen' for me by a higher power, for the purposes of making me more like Him--More loving, more understanding, more accepting...Yet I know that in addition to losing the weight, I still have' "plenty work" 2 do' ad the Hawaiians say.

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[Maryruth]

I'm sorry for what my family has had to endure, and what my husband still has to endure on a regular basis, but I know I woudnt bee the same person without having" been brought thru these waters..." so, I count my blessings each and every day, celebrate the 'small' victories and am trying to pracrtice mercy and grace with myself and with others.  After all, mercy and grace are two of my favorite characteristics of my King (Jesus is alive)--Who I daily am trying to emulate!

[Maryruth]

Taote, Have you ever tried the pool? the pool is the only place that I HAVE NO PAIN...Most water aerobics instructors will welcome someone who has special needs into their classes, and most of the fellow students I've seen also welcome differences without much Jitters, etc. (Maybe your husband and you might consider doind water therapy together so he can learn how to help if you decide to go that route ever) I am always amazed how much better I feel after just a half an hour in the water!

[Maryruth]

Yeah Shawni, it has been much more difficult learning to walk (again) at ages 50-thru 56, than it ever was when I was a. As a matter of fact, I remember that for about 6-9 months, I waddled like a toddler, with my artms straight out from my sides until they could grab onto anything!  For me the issue was that there was so much damage to the nerves and nerve roots that go to the lower extremities, that I have had to retrain the nerves to frow and do the things they need to do to get the muscles in my legs to cooperate and move--and I'm just now, at the 6 year point, begining to work a bit on rhythm, which makes walking (basically a controlled forward fall) 'work.'  

[Maryruth]

Taote, I would very much like to send you a freind request, but I cant figure out how to do it. If you want to friend me, you can use my email address:  maryruthinhilo@gmail.com to do it. There must be another way to ask you to be my friend, but I cant find it!

[shawni]

@Maryruth. Ohhh that is call "aqua exercise". I was also into aqua exercise
such as jogging in the pool and doing high knee in the pool when i did my
knee surgery. It was fun and at the same time I feel scared too. But now, I
can able to walk and continue back my exercises.

Yes, you need some experts especially physiotherapist to guide you what
kind of exercise that is suitable for you. Always remember to do your warm
up and warm down sessions properly before you after your workout. This will
prevent injuries and also at the same time to release tightness of our
muscles when we did the workout.

[Taote]

Hi Maryruth - sorry it took so long to reply.

Off the meds, ranges between a 6 and a 10, depending on how I move.  If the number is a 7 and it persists - if it isn't transient and brief, I'll go through my mental checklist to determine if I should take my meds (I really hate pain meds.  I really hate ALL meds, if I'm being honest).  My checklist goes like this.  

• What is my pain level and where.  
• Why is my pain at that level (e.g., something I'm doing, the way I'm sitting, something I did hours ago)
• Is there something other than pain meds I can do to relieve the pain (e.g., stop what I'm doing, heat/ice, gentle stretching, spend some time in my adjustable bed at zero graviy position, try to detach the anxiety and emotion
• What is the minimum dose I think would make an acceptable difference (depending on type of pain and what I need to accomplish (be able to have a focused conversation, do research on the web, go to a medical appointment or family function)

Like you I VALUE a balance of clear headedness and functionality. Some of my docs think I am too restrictive.  That I should take more than I do - that I am so anti med that it is detrimental to my health.  I am not afraid of addiction.  I am afraid of the known and unknown negative consequences (short and long term) of medication.  I take them as a last resort.  If the time comes that I must take them with enough frequency that I DO develop a physical dependence, I won't like it but I will not beat myself up about it, so long as it's facilitating functionality and doesn't lead to apathy, muddleheadedness and inactivity.  

Re: the pool, no can do for me, unfortunately.  All of the pools around here are heated for arthritic patients - even the public and YMCA pools.  My medical condition gets worse fast when I am exposed to heat.  In the summer I sometimes go out a few miles into lake erie and swim (with supervision and lots of safety measures).

I love him too, and feel very very blessed to have him (he is also a former Marine - we met in the Marine Corps).

You are lucky to have some medical expertise in the family but I wish you could have a good well rounded team : (.  I am SO fortunate to live in an area with the Cleveland Clinic, University Hospitals and other world class facilities right in my back yard.  

I seem to be on a circular path - most of the path I am at some level of acceptance, some of the path acceptance plus some semblance of happiness, and some of the path bitter and dark and angry.   It's just something I need to keep working on.  My therapist says I am strong.  But I feel weak.  I was a former Marine, strong.  Then a productinve... person - in business, in family, in life.  Now I am VERY HIGHLY dependent on everyone else - especially my husband for the most basic things.  On bad days, dependent on him for every thing, including putting on my clothes.  I can't accept the everything happens for a reason. I can agree that we are a product of what we've experienced, but I can't say becoming disabled has made me better or stronger.  The only positive thing I can say is I am far more humble.  But being brutally honest - I'd rather run, and dance, and garden, and cook.  **ahem**.  just pulled myself back into the mindset of what I can't do, and the bitter part of my circular cycle.

[Taote]

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 Maryruth wrote:

Taote, f I may be so bold, from what does the TBI stem? because you are very "matter of fact" about it. I remember that npart of the TBI--the apathy...knowing I was [my word was: 'gorked'] but not really concerned nor caring too much about it.(in my 'former life' I was an avid bicyclist, and my husband and I were hit by a truck on our tandem while touring with friends  outside of Telurid,CO, and I had relatively mild TBI in addition to a broken collarbone and a totalled tandem!)  

I am so sorry you experienced that.  I know what you mean when you say "in my 'former life'".  When I say that it's usually with an undertone - an edge - of anger and bitterness.  It's crazy how even mild to moderate tbi can have terrible consequences.

Mine was from a car accident about seven years ago (combined with previous service connected injuries).  the combination of low speed and ice caused the airbag and seatbelt to NOT deploy and my face was crushed into the steering wheel.  My dysautonomia symptoms began then, that very day.  I also lost my ability to prioritize and multi task, but I was truly unaware of the pretty significant personality changes.  Not until years later, looking back.  I've regained some of my cognitive losses, but its still really hard to prioritize, multi task, and focus.

Anyway, I'd like to hear more of your story-- and I would like to friend you if we are not already linked as friends.  I really do know the frustration of not being able to do most of what well-meaning people suggest, and then trying to go forward and get the pearls of advise from out of the dross...(Excuse the mixed metaphors)

I am always open to learning from what others have experienced, and only very rarely take offense.  I appreciate people who want to help.

It sounds like you are blessed with a good husband and blessed with a positive attitude--good for you! And thanks for the positive encouragement!

I do have a great husband.  I don't always have a great attitude.  But I find that participating on forums like these - especially trying to encourage others in some small way - DOES help my attitude.  So thanks for that.  Sent you a friend request : ) 

[hanseni]

Maryruth,

I am recovering from 4 orthopedic surgeries in the last 4 years and am essentially learning to walk again with 2 plates/12 screws in my left foot. Not an easy task. Every day is one of pain. I would love to be a fitbit friend and even a facebook friend.

Blessings to you,

Ingrid Hansen

[Maryruth]

I had written you an entire paragraph before I realized I couldnt send it
via the FitBit messaging because it was too long--AAARRRGGGHHH!!!!!

OK--well, I start again


So--Marines, huh? No wonder it is so difficult for you to accept your
limitations! When I was in highschool, one of the first years they had
opened up the Academies to women, I was considering applying when I found
out they would not have accepted me because of my history of being born
with cancer. As it turns out they were right because by my junior year the
tumor had made itself evident! None-the-less, I respect that you must have
had to do everything "better" than the average male in order not to wash
out in basic!

By the way, thank you for your service to our country, and thank you for
being willing to fight for my freedom. I have found increasingly over the
years fewer and fewer keiki who understand the cost of freedom--you know it
firsthand, and then some. My daughter was a soldier--she got out of the
army about a year after her first deployment to Iraq. Her husband is a
medic and a NCO, career army. Unfortunately for Naomi (my daughter) she is
a short and stout 'tea cup' of Puerto Rican and Mexican American descent,
and her short little legs took the worst beating keeping up with the "big
dogs". If her body hadnt betrayed her, she never would have left the Army,
she loved being an MP.

So--yes, at 56 (my birthday was just last week,) I have learned to better
accept my limitations. I am not always happy about it, but I whine a bit
less and rejoice a bit more in the abilitles I still DO have! I have found
that staying in that dark and bitter place is a lonely and alienating
space, and I have been robbed of enough, without being robbed of my "Joi de
vi!" (SP?) Anyway, I really have found that on my very worst days, if I
begin to count and name aloud the number of things that I am grateful for,
before long, the pity party is over and I'm on my way to feeling guilty for
being so blessed. You might try it sometime--if it helps, I'll be happy!

And the other thing that is VERY important for me is sunshine--thus the
move to Hawaii in 2010. Here, I can get outside and "do things" almost
every day of the year. The only excuse I have is that is may be
raingin--but, contrary to popular belief, I do not melt when water drops on
me! 😉

So--what sort of things Do give you relief? and what sort of things do you
still like to do? what are your hobbies now that you are 500 times more
sedentary than you were ever used to before the car accident?

Are you on Facebook? I'm finding it a pretty good place to connect with a
few of the freinds i've made here--My full name is Maryruth Eaves-Herrera,
and think with that and my email address u can find me there if interested.

Take care--signing off for now, Maryruth

[Taote]

So--Marines, huh? No wonder it is so difficult for you to accept your
limitations!

Serving was an amazing, broadening experience.  As with your daughter, my body suffered too, but I wouldn't change it for the world.  

So--yes, at 56 (my birthday was just last week,) I have learned to better
accept my limitations. I am not always happy about it, but I whine a bit
less and rejoice a bit more in the abilitles I still DO have! I have found
that staying in that dark and bitter place is a lonely and alienating
space, and I have been robbed of enough, without being robbed of my "Joi de
vi!" (SP?) Anyway, I really have found that on my very worst days, if I
begin to count and name aloud the number of things that I am grateful for,
before long, the pity party is over and I'm on my way to feeling guilty for
being so blessed. You might try it sometime--if it helps, I'll be happy!

Happy belated birthday : )

Yours is a good suggestion, counting blessings - but that doesn't always work for me.  Nor does rationalizing that it could be worse, or that it is worse for other people.  That doesn't make what I'm experiencing less bad.  Sunshine and Spring will help, I think.  It was around 34 degrees today, and it doesn't look to be thawing for more than a day here or there anytime soon.

So--what sort of things Do give you relief? and what sort of things do you
still like to do? what are your hobbies now that you are 500 times more
sedentary than you were ever used to before the car accident?

I'm not really able to participate in most of the things I did before, and I had a lot of hobbies.  On good days I help my husband cook (or rather, give lots of directions and cut up some things, if I'm feeling up to it, lol).  I am fortunate to have the help of my husband.  In the spring I'll resume "walks" in the park near our house with my electronic wheelchair.  Other things that help are physical therapy, including deep dry needle therapy.  

Are you on Facebook? I'm finding it a pretty good place to connect with a
few of the freinds i've made here

I don't really ever visit my facebook page - I've struggled with isolation - intentionally isolating those I was close with while I was still active.  

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[Sewinator]

I just found this thread and feel like I am in a room full of friends!  Maryruth, your story sounds so similar to mine!  Taote, I can understand your pain and struggles.  

I have been suffering from Idiopathic Peripheral Neuropathy for the last 10 years. (I am currently 54).  I can understand the "learning to walk again" story.  I am also taking daily pain medications and am pre-diabetic due to weight gain from being inactive for so long.  My goal is to lose 50 pounds. 

I finally have the correct balance of medications and am able to walk and exercise daily.  I swim 4 X a week and walk as often as I can. 

A few weeks ago I walked at lunch with some co-workers and forgot to change my "dress" socks into "white" socks.  I came back from the 2.5 mile walk with the worst blisters on both of my feet... right under the ball of my foot.  I wasn't even aware they were forming until it was too late.  Setback!  

Recently a friend gave me access to their gated community where there are 3 heated pools.  I am very careful to follow the rules and not bother anyone when I use the pools.  It has made the world of difference in my ability to exercise!   

I live alone,  no husband.  My children are grown and have moved out, so I have to be careful exercising at home.  I have fallen a few times early in my disease and torn rotator cuffs and damaged my wrists.  I think the hardest part of being diagnosed was admitting I need help!  I raised my 2 daughters alone, have always worked and been independent.  Asking for help is very hard for me to do.  This disease has taught me humility and patience!   

Now it's time to focus on eating healthy and making sure I balance between calories in vs. calories out.  I am determined to beat this disease and get off the pain meds!   

Before I was diagnosed I was an avid runner.  4 - 8 miles daily was my routine.  When I didn't run I got grumpy and had to find a way to burn off my calories.  Now I can't even WALK 3 miles a day!  I will get back there.  🙂  

I would like to send friend requests to you all if you don't mind.  Thank you for sharing your stories and I look forward to seeing all your progress.  It is so nice to meet others with similar issues.  Others who "understand" how pain can drain you physically and emotionally.