bettereveryday

[shbettereveryday]

2 Years - Emotions

How does somebody process the life changing aspects of an injury such as a Spinal Cord Injury? How long does it take to come to terms with it? I will let you know when and if I ever completely come to terms with it. I am not sure there will be a time where I don't mourn the things I can't do or be upset by the things that restrict me. For me the way to process the changes in my life started with this blog and the attitude behind it. The title bettereveryday was literal at first but also a metaphor for always improving. I have held true to that. It took me nearly a week to get there. Waking up from the surgery paralyzed was something I can't really put into words. Fear, anger, worry, anguish, desperation all wrapped into one. I won't lie the first few weeks there were times I thought I would have been better off dead but using this space to share, inform, and for me a space to vent was really helpful. I know in some cases I shared maybe too much even though I have, believe it or not kept some of the most sensitive things private all this time. After the first few weeks through the first year the sorrow about my position would hit sometimes without warning snd sometimes after I couldn't do something or get into a position where being ablebodied it would be nothing but now impossible. Into the 2nd year there was significantly less of it but still under the surface. Most of the time it comes out with bladder or bowel issues.

It is a difficult thing to measure the amount my life has changed in 2 years. Those changes have been well documented here. It hasn't been all bad. I have learned a lot about myself in the process. One quote that got to me early was - you don't know how strong you can be until being strong is the only choice you have. I have discovered that strength not just physically but mentally to get to where I am on my 2nd anniversary. It has awakened in me something that I knew was there early on and that was a desire to help others. I don't know how that will play out. I know at first I want to be a mentor to new SCI injuries. The 2nd anniversary is important to that goal as at least the mentor program wants you to have lived with your injury at least 2 years. That is something concrete I can do now. I want to be able to give somebody going what I went through the first few years that there is hope to live your life. It may not be the life you had but it can still be a good meaningful life. I also want to keep doing something with this blog or whatever you call it. I think I have been able to help with disability awareness especially with SCI and some of the public and private issues we deal with. The form and space I continue with may change but my mission to be bettereveryday physically, mentally, and with purpose. Thanks everyone for being part of this 2 year journey with me. Your kind words and support really do make a difference.

[shbettereveryday]

2 Years - Looking Back

Wow just typing it seems unreal.  Seems not possible that I am at my two year anniversary of my injury.  I remember early on after coming home having days that I couldn’t imagine going a few more days.  As I joined on-line community I met people who were at 2 years and it just seemed so far away.  This last year has been a year for problem solving and growth.  As I reread last years 1 year anniversary blog I was dealing with Bladder incontinence, Leg and back tightness sometimes severe, not driving because of the tightness and having difficulty finishing my work day due to the incontinence.  I was attending Paraquad less and felt pretty limited due to the different problems.  My goal the first year was to be driving on my own to work but that didn’t happen.  I looked around for solutions.  

My bladder incontinence was not responding to the oral meds so I found BOTOX of the bladder.  That was the answer I was looking for and that allowed me to get on a better schedule for intermittent catheter schedule with no leads in between.  It takes the worry about embarrassing accidents away and brings confidence back.

After working with Logan Chiropractic for awhile and Physical Therapy.  I could only find temporary relief for my muscle tone in my legs.  They were often as stiff as a board and it made transferring more difficult.  Which is the reason I wasn’t driving.  Driving was the easy part the transfers into and out of the drivers seat were the problem and the stiff legs made that very difficult.  I had heard on social network communities about the Baclofen pump.  Something that delivered the Baclofen directly to the spine.  The side effect of the oral baclofen was sedation and often during the day I was battling severe tiredness.  It was something that also affected my work and daily activities.  It was a surgery and there was a lot of fear regarding that due to my last outcome of my last surgery.  Also the fear and apprehension that it wouldn’t provide the relief I was desperate for.  At that point if it didn’t I just didn’t know where to go next.  After a few months of deciding I went with the surgery and it has been amazing.  It gives me control over my legs and enough tone to function.  It is adjustable if necessary and I have a way to take 3 extra doses a day as needed.  There was a snag with it moving inside of me that required another surgery to fix but it was so worth it for me. 

During the year I was given another challenge.  As I had gained weight over the year I developed Diabetes.  I was a little thrown by this at first but after my shock and anger I was able to make some changes that have resulted in the A1C number going down 2 points, losing 12 pounds, and my cholesterol numbers getting back to in range.

I feel like I have met every challenge in the year and found ways to improve my life and continue to be better everyday, 

[shbettereveryday]

Day 714 - 728

Coming up on my 2 year anniversary and it is and will be a lot of emotion tied up with it.  I will get to more of that on Thursday.

The last couple weeks I have been sort of uninspired to write so the blog has been somewhat absent.  This time period include the remainder of my vacation and a week plus of getting back to work.  Most of it I have been dealing with ongoing issues with bowel management.  As most of you know who have followed my blog and my dealing with this issue this is probably number one on the things I hate about this injury.  Even when the problems don’t end up with accidents the constipation and slow motility heighten nerven pain and back pain creating most of the problems I experience during the day.  I still have accidents but most are when I am at home in bed stretched out usually on one of my sides.  I rarely have them while in the chair which I have had but am thankful that it isn’t common.  

Just an explainer for those that don’t know and a refresher for those that do.  Spinal Cord Injury can cause what is medically known as neurogenic bowel which is what I have.  The crossed up nerves from the injury affect the usual working of your bowels.  Causing slow motility of stool as well as inability to feel and lack of control of your muscles including the ability to go when you want.  It varies within the injury for me I have no idea when I need to go or even when I am going or the ability to make myself go.  

Anyway the week off was challenging to all that because it threw me off the daily routines and eating schedules that I had probably making things worse.  Usually resulting in days of constipation moving to forced relief through medicine.  Not a good pattern to be in.

The reasons I bring it up are multiple:  One it is something that affects my daily life.  If there is a day I don’t feel good it is more than likely the underlying cause.  Two it is something that is the biggest challenge to my independence.  Three it is something that has the start in my mind of a medical surgical solution to control it and help with my independence.  That will be something that I wrestle with in my 3rd year having an SCI.

I also want to update you on my diabetes diagnosis almost 4 months to the day.  After that I started a medication and saw a nutritionist who got me started on a low card diet.  I have been in my estimation about 80% compliant with that diet and been very good about keeping up with the twice daily meds.  My recent test results showed a significant drop in my A1C and I have lost about 12 pounds since I started all that so I consider that all good news but look at it as just a start. 

Everything since this injury I have taken up the fight and found solutions and continue to keep fighting for my independence and control over my life.  I will have much more on that on Thursday where I plan on looking back more broadly on the last year of SCI and reflecting on my place and what I think might be my next steps.  I will say this blog in this form will be undergoing a change that is still in the concept phase of a next step.

[shbettereveryday]

Day 712 and 713

The end of the trip finished much better then it started. Overall we had a very good time and good success with traveling. The only thing of note about disability on the ride home was my stop at a rest stop in Illinois to cath. This was all sorts of bad even though it was marked with a handicap sign. First there was one handicap spot and all the spots were slants and the access area was only to the drivers side so no access to the ramp side without backing into a slant space the wrong way. Luckily the spot next to the ramp was empty. If I was on own it could have been problematic. Next the handicap stall was basically a little wide regular stall. No room to pull next to the toilet and not enough to pull straight in and get my chair all the way in. So I just left the door open and did my thing. Put aside the usual messiness of a rest stop bathroom and no AC but that stuff is for everyone.

Today I went Paraquad but got to hang out a little longer and talk to people. There was what they call happy hour that they do twice a month where people get together and talk about disability issues. The bulk of it was the same as the last time I went it was complaining about call a ride. That is the paratransit service of Metro Bus. They pick you up at your home and drop you at your location. Apparantly they are notorious for being late picking up or dropping off. If you aren't ready in 5 minutes from when they arrive they will leave you and possibly not get another to get you. Leaving you to find another way. There are rules so hard to say if the worst stories are people breaking those but the general consensus is they don't care and are unresponsive to complaints. Some also allege retaliation if they speak out. Feels like a story for my station to consider. I also got talk to somebody I had met once. He did what I do for another station but his injury was more severe and he wasn't able to return to work. We had a nice talk about common issues we have and in the process found out he lives a few blocks away in the city I live in. Small world.

[shbettereveryday]

Day 711

Abilities....

I have been losing count of the days as I am posting less but just 19 days away from my w year anniversary I can count backwards easier to get caught up.

We are on are third attempt at traveling. It is a work in progress. Learning as we go. It is not easy neing seperated from your safe world. Our house we have worked to get it where I am comfortable doing the things I need to do for independence. There are still things to do but there is comfort zone. Traveling takes you out of that which is good and bad. Good that it challenges you to take the abilities you have and test then outside your zone. Bad in that to that takes a lot if planning and much more work. When we left we knew that we would forget something more on that in a moment. We were headed to The Abilities Expo in the Chicago suburbs. Leaving as my last post recounted was not ideal we had a huge issue that threw off our plan for packing and leaving. Messed up our sleep and put us out of our comfort zone a day earlier then ready and not prepared at all. The result was a little more rushed and less organized then we would have liked. On top of that we were both tired and cranky. I think both of us were getting close to a point of wanting to scrap the whole thing. I know I had those thoughts but we didn't do that. One of the problems is traveling with equipment you just can't just pick up at any store. Also with medications that might not be able to be replaced. That is where we had our problem. I am taking as needed a prescription from last year for bladder incontinence. I use it as the BOTOX effectiveness is wearing down while I wait to get that treatment again. I started it last week so it hadn't worked into my usual rotation. In our comfort zone it is in the house we add it in as we go. When you travel and need it all with you. We don't take every pill bottle you might need you tske yiur daily routine pills. Since that hadn't been added yet it was forgotten. Since it wasn't an active prescription and it was Friday night a call to the doctor for a backup wasn't doable either. Resulting in needing to have to deal with leaking between caths. That is manageable but the overnight is the issue. Don't have plenty of disposable pads or washable and really not an option to wash the ones we have. Also don't hsve waterproof mattress cover or the water resistant pillow covers that we have at home. There is no way to pack everything you coukd potentially need. It is already too much but wouldn't be practical to even try. That resulted in a leaking incident overnight. We controlled it as much as possible with all the stuff we did bring but have to move on with fewer things and we also got a hotel pillow a little wet to. Part of dealing with SCI is dealing with neurogenic bladder and bowel. Just part of my life.

Now to the Abilities expo. It wasn't quite a big as we expected. We both thought there would be more small consumer things as well as big mobility companies and transportation things. The thing that stood out was seeing all the people with so many different levels of abilities and all ages. Quite a few wheelchair traffic jams in the expo hall. It is aptly named seeing all the things designed to foster ability it those with disability. Wheelchair sports, devices etc all designed for you to maxamize the things you can do. Everytime I see others that might not be as able as me I remind myself to be thankful for what I am able to do and what I have. That doesn't stop me from wanting everything that could help my life in some way but can't afford. Saw a drive on action track set up (basically tracks like on tanks instead of wheels) they sell large ones for true offroading but this one you can roll a manual chair onto lock into place and go on to the beach, snow, or light brush. Don't NEED but could see use. Love to have standing chair could probably benefit from but good luck convincing that it is medically necessary. Anyway you get the idea. The sad part that is so hard is seeing the really little kids in chairs or specialty strollers. That just tugs at your heartstrings. I am definitely thankful for what I have and my abilities aided or not coming up on my 2 year anniversary if my injury and sometimes marveling at how far I have come.

[shbettereveryday]

Nothing is easy..

Besides everything in my life being just a little harder then it should be I am managing ok but today has tried my patience. We knew some day we would need a plan for what to do in a power outage. Today was suppossed to be a good day. Last day at work before a vacation usually is. At work we had Severe Weather warnings. Not anything that is that difficult have done them a million times over the course of a 25 year career. At home however it brought a power outage sending my wife and dog to the basement with tornado warnings. There wasn't a tornado near us but the power did go out. An inconvience usually but a big problem now. We were gearing up for a trip and being disabled means that with these high temps and no lights we would need a place to stay but even with family here. I can't get into the bedrooms or the house in some places. That meant calling hotels looking for accomodations that eorked for me with ideally a roll in shower. Called around with no luck. Luckily my sister found one and made a reservation. Now it used to be toss a few things in a bag and call it a day. Now we need the bedside commode. Supplies for toiletting for me (which isn't a small thing). We have a couple emergency bags with some of it but donwe have enough. Of course all this is all late at night. We will have eventually a more streamlined plan. This highlights our need for a plan a hotel or few hotels that meet. Our go bag ready to go and sure it is what we need. The big things the rail and commode can't travel on a regular basis but the rest is doable. It just makes everything so much more difficult but I guess the upside is I am on vacation and no particular worry about time. Really want to make our destination this weekend but if we can't we can't.

[shbettereveryday]

Day 686 - 694

Painfully speaking..

While I get closer to my 2 year SCI-versary I am posting less and less. My days are getting more and more the same, so to speak, so there isn't much there for daily input. I probably need to reevaluate the blog and consider moving off Tumblr. I think most follow me on my Facebook reposts. Anyway one of the things which is now normal is pain. I live in some varying amount of constant pain, most of it nerve pain. This isn't new or worse then before necessarily. I have learned to live with it better. I also have fairly persistent low back pain as well as pain in my hands and trigger fingers on both sides. Probably the most difficult pain I deal with now is, for lack of a better term, hypersensitivity. I have an area that wraps along my waist on my left side from my spine to my groin. That is always sensitive some times worse then others. It usually flares at its worst when I have bowel problems, which is pretty regularly. When it is bad, a very light touch can be extremely painful pushing an 8 or 9 on the pain scale. When it is like this it sends shooting nerve pain down my left side, worse in my groin and upper back leg. In the pain docs office, now one of my most frequent visits, they have body charts of trigger points and this area is listed as one. I don't consider this a nerve pain but it probably is neuropathic. Nerve pain I feel in both sides but any pain associated with touch I don't on the right side. You might say 'well don't touch it and it shouldn't hurt' and that is right of course but the area I am talking about always has clothes or something against it. When it flares there is no avoiding it. You may see me wincing on occasion it is usually associsted with this trigger area. All in all I have managed it pretty well especially the nerve pain which used to sit at a constant 3-4 but now usually sits around a 2-3, flaring occasionally. The pain on the left side means I am feeling something and am glad for it, but I sometimes think I'd like it to be more like my right leg and feel no pain or anything, if the pain doesn't result in movement too. I really don't want to bring you down. Like I said I manage it ok. It is a fact of my life and learning to deal with it has helped me be bettereveryday.

[shbettereveryday]

Day 685

Support group

I think I have found a support group that I can attend with my schedule and has a chance at succeeding in getting people outside of the rehab setting to attend.  It has been attended by some regulars which I now count myself and people who are inpatient at Mercy Rehab.  One of the things that always strikes me is peoples stories both the tragic ones and the amazing ones of recovery and triumph.  There are some that just rip your heart out.  Yesterday was one of those. A young woman was in a car wreck in rural missouri.  The other passenger in the car died.  The car went off the road and wasn’t found for hours while she layed there not able to move.  Turns out she broke her neck and is a high quad.  Many people with Spinal Cord Injuries enter with sever complex medical issues on top of the Spinal Cord issue and takes months of acute care just to get to the hospital with injuries from wrecks or gunshot wounds two of the most common SCI causes.  She was quiet but the heart wrenching part was still to come believe it or not.  She is a young woman with 3 kids 6 or under.  She goes on to say that her oldest child who is 6 tells her that she will teach her to walk again since she taught her to walk.  A room full of people who all have been through their own tragedy just sort of paused there was even a gasp or two.  The emotions conveyed with that statement are raw and even though the conversation quickly moved to who they enjoy helping feed mommy or ride on her lap.  It was something that stuck with me.  We talked later about being noticed in the chair and a couple said most people don’t notice it but kids do and sometimes say the most blunt things.  The are curious and maybe don’t have the most developed social norms built up.  This group has three walking SCI and 2 in chairs plus the young woman then a young man also from a car wreck.  He was more then happy to show the picture of his friends car and you see it and are shocked that you you could survive it.  The stories like i said are tragic but they are often followed by stories of perseverance and triumph at least we all hope that is the case. 

[shbettereveryday]

Day 678 - 684

Wind in my hair?

This week during the work week I drove everywhere I went. First week to have done that. We has a busy weekend scheduled with a lunch planned on Saturday afternoon then attending our niece's graduation (which seems impossible that it has been that long). For lunch we finally made it to the bloom cafe. It is a very nice cafe in its own right not to mention all the good it does. They hire people with disabilities to train them in a real working experience. They have non-disabled people working as well. That is the cafe's mission run by paraquad, is to have an opportunity for disabled people to get valuable on the job experience. Anyway had a nice lunch with my family. Then after a rest in the afternoon we went to a small arena for the graduation. Not the best experience as a diaabled person. They in the area the signs directed for disabled to go had no handicap spots with access areas for the ramp. They had a marked crosswalk area but no cut through for wheelchairs you had to find an open spot between cars with an area big enough between parking stops to get through. Once inside I basically skip the metal detector we were directed to the one elevator with a line of people with mobility devices waiting. I asked and was told there was a ramp switch back on the other side of course opposite where they instructed the handicap to park. The graduation was nice and we are so excited for her future. Sunday had a lunch planned then and then in the evening my sister and brother in law came over with their convertible. I had eyed that as an option to try a car transfer. It had large doors and could have no roof to worry about. Anyway I did my first car transfer. We tried in the hospital but wasn't able to complete it. So it was a little difficult but got a nice ride in a regular car and now know we have an option if needed for emergency transportation in the manual chair.

Now I had bowel issues and had to leave work early one day because of it but all and all it was a good week finishing with the car transfer. Always trying to find ways to challenge myself and be bettereveryday.

[shbettereveryday]

Day 671 - 677

Back to life

As I continue to drive myself to work it is time to start out on my own for everyday parts of life.  Probably a year ago or so I made my first trip on my own to Best Buy but nothing since.  I was delayed with medical issues and winter getting started with all this.  Saturday of this week I wanted to make a run to the grocery store.  We needed a few things for what we wanted to make for dinner and I had rented a movie at the redbox at the grocery store.  I had been to the grocery store a few times but always with Michele.  I had grabbed things in the isle etc but not had to carry a basket or push a card.  It was a hot day and transferring in the hot van can be uncomfortable but that is part of my life now so I have to be able to do it.  Trip was uneventful and a few of the van accessible spots was open so all that was easy.  I had brought a few of the bags that Michele has that fold up in my bag.  I started picking up the movie and put in my bag so I wouldn’t have to do that while trying to mange two bags as well.  I grabbed one of the baskets as I only needed a few things.  My bag I can carry with the handles hanging on the left arm rest.  That allows me to hold the basket with my left hand and rest on my lap then maneuver with my right on the joystick.  This all is easier then it would be in a manual chair.  First was picking up bread and that was easy eye height and easy to get.  If things are on top shelves that would be more difficult with the power chair easier because it can go up but all it all this is a point where it might become just easier to ask for help.  In general I don’t want help unless I ask for it.  Also regularly people ask if they can which I appreciate and if I don’t want it I will politely decline.  The only time it annoys me is when I decline and they go ahead and do it anyway.  I do run into this and I guess it signifies that they must think I am so unable that I can’t even decide for myself if I need help or not.  Most of the time it is good intentioned so I try not to let it get me angry.  Next up was getting milk this is a little for difficult,  They have this big bar at foot level right before the case.  I assume this is to protect the case door from getting rammed by a cart or a pallette jack or something.  The affect for someone in a chair is that it makes it more difficult to get to.  Luckily in this chair my foot went under it just a little.  I was able to open the door but with a basket in one hand and the other running the joystick it was a little trying but doable.  Once with the door open and my chair holding it open I had to figure out how to reach the milk.  My solution was that there was a little lip just inside the case and putting my basket there I was able to free up my other hand.  Also at this point I had already turned off my chair controller.  This is something you learn to do because it is easy to bump the controller accidently and it is unforgiving.  If I bumped it forward I could easily break a bone.  They have quite a bit of power and just go forward until it is stopped at the controller no matter what is in the way toes bone etc.  Anyway after grabbing the milk and getting it set in my basket I drove myself out of the doorway,  Next was the feezer case.  It didn’t have the bars at the bottom but my feet did hit the bottom of the case.  Here there was another shopper hovering and I thought he might need the same case.  I was opening the door he asked he could help.  I said sure, I didn’t need it but was ok with it.  When I got inside the door I told him I had if from there.  Turns out he was hovering because he wanted one of the same thing and he asked me to grab him one while I was there which I did.  It did put the next one even further away but it still was fine.  Getting to the checkout worked but I know from experience that some of those isles with all the racks there that they can be to narrow.  I decided to skip the self check and used a regular checker.  This has more room to set the basket and just easier to have them do it.  Not to mention supporting the workers doing those jobs.  They asked as they do for everyone if I needed help to the car.  With only two bags I said no. but it took awhile getting the bags set so I could carry and drive the chair.  I felt a little rushed as she was checking the next person but it takes what it takes.  All and all a successful trip and another step in getting back to life.   In general I wasn’t much of a grocery shopper before my injury and likely that won’t change too much.  Michele will do most of it but it is good to be able to if I need to.  just a few things like that it will always be faster for Michele then me and that is just a matter of fact.  I still need to continue to experience life.  All that being said there was a thing Friday night work related that I may have stopped by after work just to make an appearance but the work and hassle of it not knowing parking etc just made it not something I wanted to deal with at the end of a long shift and long week (they are all long).  This experience among many others is all part of my journey being bettereveryday.

[shbettereveryday]

Day 658 - 670

Helplessness

Since the last time I wrote I have continued to drive on my own and push independence in different ways. SCI however always wants you to know who is in charge. After dealing with constipation for days last week I had an accident at work. I wasn't aware until I got home. It was minimal but the helplessness of not knowing much less being able to do anything about it is horrible. If course that wasn't then end of it. It lead to problems the next few days and worry about it all due to those problems. I had a number of things scheduled on a few days off work for my birthday. Those worries would be in the back of mind the whole long weekend and end with having to take some medicine I use to clear out which is not a pleasant process I will leave at that. On my birthday on Thursday a coworker who's family owns a restaurant in town treated Michele and I to dinner. It is one of the best places in town with a beautiful view of the Arch and riverfront. It is also 40 floors up. Not something you think much about until you are in a wheel chair and think how helpless you are if something happens and you have now way down on your own without help. Go to a baseball game the next night with a heavy rain preceeding and during. Again not something you worry much about until you are in a wheelchair and especially a power chair. Saturday to Sunday I was dealing with the bowel issues and needing the clear out as mentioned and storms rolled through. Our dog is out of her mind terrified of storms and is prone to possibly even hurt herself in this state. My helplessness leaves Michele to deal with this all on her own. This keeps her up most of the night and me as well. There is nothing more helpless then hearing the ones you love hurting and absolutely nothing you can do about it. This injury robs so much from you and you are helpless to do much about it.

I would like to leave on a positive note. A man I met at Paraquad who I knew worked at Busch stadium. I saw his there and talked with him as he was working in the area. He has been injured awhile and it is cool to see such confident capable para working. He got us on the super secret special elevator as we left. It does make me realize that I may not cure helpless feelings I may have fewer of them as I go.

[shbettereveryday]

Day 656 - 657

On My Own

This week my goal was to get on my own as much as possible. Monday I had a support group I had been attending. It was the first time I did multiple things in one day driving on my own. The meeting was good a little more lightly attended then the past 2 but this one has the potential to have more outside attendance. It still has the advatage of being able to connect and support inpatient people as well. This one had a man who was involved in a car accident. He drove for one of the airport shuttle service. The accident as far as I could tell was not in service for work. He is T5 and has a couple more weeks. He has 2 young children and wife. He was the only income earner so he does have some issues that he will have to figure out. He was receptive and asked questions. Especially of the other 2 people besides me because they are walkers. Yes there are people with SCI that can walk some regain some use right away some later. Anyway even though his doctor said he wouldn't walk again he was interested in the possibility. I don't like thise kinds of declarations. I have heard stories from too many people who were told they couldn't and did. We all said just keep working at your goals. That is sort of what I have been doing for close to 2 years setting small goals and working at them. I drove again today to Paraquad and then work. It feels good to be acheiving goals. Being able to be independent in daily living is one of those and I am definitely on the way snd becoming bettereveryday.

[shbettereveryday]

Day 649 - 655

Time

Saturday night we went to dinner with my twin sister and brother in-law to party plan for our 50th birthday party. The party is in a week our birthday is a little less then two weeks away. Also 4 weeks from Saturday is one of my niece's high school graduation which means it was 18 years ago living in South Carolina I remember awaiting the news of her birth. Both of nieces are on Michele's side of the family but have spanned my entire relationship with Michele. I am very proud of both of them. The first one just got married last year. Time is a funny thing it sneaks up on you. I think and I can't believe how fast it goes. Later this year I celebrate 25 years of marriage. I remember thinking a long long time ago after we were married that when we both turned 50 we would have been married half our lives. Back in my 20's it seemed so impossibly far away but it has gone in an instant. Working my way to two years post injury this summer as well. Age and time is tricky like that. I have never thought or worried much about birthdays fretting over turning 30, 40 etc. This one is a little different because I have to acknowledge that having an SCI at 50 is a much different experience then having it at 25. The majority of people that are new to SCI are younger then 30. What that means is my comparison for where my progress is often compared to people who are half my age. Not that I was ever really in shape bit my 25 year old self would have been better equiped physically for all this. Don't take it as I wish it would have happened then. Just that it would have been easier physically then it is now. Now that I have started to adapt and figure some things out weeks are going by quicker. This week flew by since my last blog. My last entry I was trying the manual chair around the neighborhood. I was facing the reality that pushing in the real world is harder then pushing in the hospital and at Paraquad and I need to strengthen those muscles. So this Saturday I tried the wheelchair "treadmill" at Paraquad. You work those shoulders used in pushing a chair. I was impressed and shared on one of my Facebook support groups. I was a little dissapointed in the reactions I got that ranged mostly to you should be going outside and why are you paying to do that when you should be outside. Well I should say most comment from their 20 - 30 year old physical view point. When it comes to the manual chair vs power chair I feel a little attitude from other wheelers about being primarily in a power chair over a manual. I think 25 years ago I would have been in a manual but I do know I would have had a hard time going back to work in a manual. I just tell them for me it is a process that will likely be a few years in the making to be in a manual. Now a quick note about somrthing that I did on Saturday that I haven't done since my injury. I got in bed and undressed completely on my own. Sounds surprising that I hadn't done that yet. Getting my legs into bed is the hard part feeling less stiff also helps thanks to the pump. The process requires removing my shoes in the chair and using leg straps to lift my legs into bed after transfer. Then getting undressed in bed. I have done all those things separately but not together. Michele and I have pattern that has worked for us but I do need to remember to keep trying to do things for myself when I can. I just have to remeber that despite turning 50 soon that I am still a very young SCIer too. Time is such a funny thing.

[shbettereveryday]

Day 642 - 648

One thing I have learned is to really try to concentrate on things you can do and have. You can get reminded easily of being grateful for it. Michele met a man on Thursday at Paraquad. He is younger then me living at a nursing home. That means he doesn't have anyone who can take care of him and doesn't have enough ability to live independent. I see all the time on forums of people who's signifigant others have left because they couldn't or wouldn't handle the responsibility and work that it takes. My PT mentioned that one of her other SCI clients had this issue. While another has tremendous family support is doing well even employed. I am so lucky to have Michele who has taken on the huge task of being my caregiver. Without it I am not sure where I would be. I would have to hire help as I am like the gentleman above am not prepared to live on my own. I am fortunate to have a job I could go back to and do as well as company that has been amazing in accomodating me. So many thier new disability makes doing the job they had not possible and are forced to find a new job and/or learn a new job. Many Don't have as supportive a family as I do with the help of them I have been able to buy a van along with other things to help me be successful. All that being said I can credit one thing to myself and that is determination and knowing myself. I have come along way with just sheer determination to do so. A small example in the last couple weeks. I was resting in the afternoon and Michele was sleeping. I wanted to get up but my shoes were on the floor and the chair a little lut if my reach with the use of a reacher and just determination I was able to get the shoes get them on get to the side of the bed. Then using that reacher get the chair over and get out if bed. I am defermined to be independent and will be at some point. I go to work everyday when many days it seems impossible for some reason or another. I have made some steps lately with driving on my own along side the little things. I found the reality of pushing myself in a manual today as I had a real world test going just a quarter of our block and my shoulder was hurting. The uneven and slanted surfaces of out sidewalks. I still plan on working at this and getting more capable but I knew leaving the hospital that the manual chair wasn't going to give the independence I wanted right away. Even though therapists and doctors wanted me in a manual. I knew I wasn't ready to be in one and go back to work as soon as I did. I knew what I wanted and what I didn't and was determined to work against the system to get it. I know I made the right decision due to house accessibility issues and being able to get back to work so soon. 20 years and 60 - 70 pounds ago it may have been different but my determination and self-awareness got me what I needed. So when you see me it is a combination of people and things that get me to where I am. Without anyone of them I might not have gotten there. It all helps me be bettereveryday.

[shbettereveryday]

Day 638 - 641

I kept up the momentum driving almost every where I went this past week.  On Saturday I wanted to drive on my own.  I knew when I started thinking about it during the week after my boss asked me to work that it would be milestone for me.  I was nervous as anytime alone without backup is scary.  I was also confident that I could handle it.  With the same concern not about but all the other drivers out there.  We all think we are the best driver don’t we.  Anyway as I was getting in the van I could feel the nerves building.  As I got on the road they started to go away,  As I got to work and had to get in the garage and transfer out of the van I had more.  I have done all sorts of things to prevent problems or solutions to problems I have encountered.  Most had to do with dropping stuff.  I have a thing that goes around my wrist to hold my keys while transferring etc in the van so I don’t drop them.  I learned the control cable for the chair could be very difficult to reach when I dropped it so I zip tied part of it to the seatbelt connection so if I dropped it I could reach the cable there.  I put a reacher that I could reach both from the drivers seat and my wheel chair in case I dropped these or anything else.  I still would have to worry about something getting under the seats where I couldn’t reach them but hope that the precautions I made prevent that.  The one thing I have not come up with a solution for is the pass that I have to swipe for the garage.  I have to lean out of the vehicle and for me that means putting it into park and getting as close as possible to the thing to swipe to.  That also means the pass is free to say fall out of my hand at the gate or into the car where I couldn’t get to it.  Either of those would be a problem but for now I am just really careful with it.  As I returned home I was just anxious to get it over with and get that relief and feeling of accomplishment.  I was very proud of myself and Michels was too as well as just realizing how significant that 25 minute each way trip was.  While I was and am still dealing with bowel issues all that get pushed aside for this moment of change for me.  I may not be going solo every day but it is a test that I made for myself to prove that I could and continue to be bettereveryday, 

[shbettereveryday]

Day 635 - 637

Moving Forward..

It seems the last few weeks have been fluctuating between ups and downs with how I feel. Right now I have a burst of energy and am having a good week so far. I have been driving. I feel so normal when I drive. If not for the handicap plate and the raised van I seem to everyone else equal on the road. Tuesday I drove everywhere that I went Paraquad, work, and back home with Michele as a passenger. On Wednesdays now I am driving on my own to my PT appointments which is really close. I also ran went to a drive through to get us lunch. Pretty simple thing but I haven't done that on my own since before the injury. I am expanding my driving with the goal of driving myself to work. Transferring to the drivers seat has gotten easier and faster. That is the key to feel comfortable in transferring because the driving is the easier part. Hope to keep that going this week as the weather is nicer. Hoping things keep trending in this direction in becoming bettereveryday.

[shbettereveryday]

Day632 - 634

Wasted Weekends (TMI just TMI)

As I have tried to do in this blog I have been very forthcoming about SCI and what we go through.  It is often about embarrassing matters like this but hopefully it gives you an idea how SCI affects a body and a persons life.  The following has pretty detailed information about bowel issues with an SCI.

After making changes to the bowel routine the last week I was starting to suffer from moderately painful constipation.  In case you aren’t aware the bowel routine is something you have to do with SCI to control neurogenic bowel.  That is one of the most despised problems associated with an SCI.  Your bowels don’t function by moving things through on it’s own and you can’t open the sphincter to empty your rectum with out the help of enimas and/or manual assistance.  It often needs help from a mixture of laxatives, softeners, bulking agents (fibers etc.)  They put you on a routine in rehab with the goal of reducing chances for accidents and keeping you as regular as possible.  This condition is often described by people with SCI as the worst part of it all over lack of mobility even.  It affects the ability to socialize, work etc and can lead to other health issues as well.  Well if it is the new diabetes medication or because I had been sick I had been having more accidents luckily all had been at home but one had cost me a sick day at work.  I had already had a GI doc appointment to see what else could be done.  He started me on citrucel a fiber supplement.  Well by Friday I moderately painful constipation by Saturday it had increased and it needed to be addressed.  One of the more extreme home remedies is Magnesium Citrate an Oral Laxative.  I can tell you it works if you ever need it but you just don’t know if it will be a half hour or 6 hours so you wait and you certainly don’t go anywhere.  The trick is being on the commode for a person with SCI it is a process to get there.  It isn’t ideal to be in bed especially for Michele who was to clean it.  The result is it did start in bed a little but not bad and after a little clean-up we got me to the commode and 1 1/2 later we felt I was done.  Over the course of the next 24 hours I wasn’t and had a few involuntary movements.  

The result of that was staying in all day on Saturday and since it was also on Sunday I had no confidence to do what we had planned so it basically kept us in on that day to.  It is frustrating to not be able to fully participate in functions due to this and other issues because of SCI.  When I do go to an event or work even it is a result of a planned process of things like this and others.  It takes a lot to get to a point where I can do things but sometimes I just can’t.  Many weekends I am just tired from work and doctors appointments, working out, or therapy.  I hope to someday be more able to enjoy life on the weekends and have more days where I do what I want and not stuck at home.  But as of now I am still less then 2 years from injury and very much a work in progress in getting bettereveryday.