Chronic Illness: How Quickly Things Change

My life used to revolve around work, exercise, and whatever little bit of social life I had.  Now it revolves around doctors appointments, tests, medicine refills, and constant worry about what the future holds. A person can go through life day after day doing the same routine, never knowing that one day it can all change and become a very different kind of routine. The kind of routine some people are lucky enough to never experience.

I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.

I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.

I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".

All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.

Guillain-Barre, I Hate You

I've been struggling with writing this today because I'm so sad and frustrated. The last MRI found nothing of significance to cause what's happening to me. There is mild degeneration, mild arthritis, etc, but no spinal chord issues and no tumors or lesions. I mean, this is obviously great news, but for me it's just more questions. Without something staring us in the face and saying "hi, I'm the reason you're in constant pain and your legs are tight and miserable", we are left with nothing but more questions, and more tests, and I am left frustrated and sad. I can't think of another word for how I'm feeling except sad.

So, U of M here we come. You've got your work cut out for you. Mayo may still be an option, also. I spoke with my doctor today, and he agrees I need to write a detailed letter explaining the whole story. Mayo is only seeing a very small picture of a much larger story that spans nearly 18 years now, and in my doctor's own words "this is not an easy case". I am going to write that letter, and I am also going to ask my doctor if he would be willing to write one as well. Since my records from my initial illness are long gone, it's up to me to fill in the blanks that Mayo has not yet seen.

So, here I am, back to square one. Thankfully, I officially fired my old pain doctor and now have my primary physician handling my pain management. He supplied me with a Fentanyl patch today, and so far it's making a world of difference! The only tweak that will need to be made is a stronger dose. He gave me the lowest dose just to be on the safe side, and I agreed that was the right way to go, but I can already tell I will be fine with a stronger dose, and I am definitely going to need it. The benefits of the patch are too numerous to count; starting with, I actually felt like I might be able to stand up today. I tried, but things are still too bent and too tight, but the urge was there, and I feel after having the patch a bit longer, and maybe even having to wait for a stronger dose, I might be able to start standing again. If I can do that, I can hopefully get these damn legs working better and not just being huge pains (literally).

Guillain-Barre Syndrome Awareness - Happy Valentine's Day

I thought I would share some nice pictures I came across that were taken before I got sick.  These were taken the summer before.  I miss that body.  Those long, strong legs.  Who would think that someone this healthy and fit would be sick and half dead in just a few months, and all due to some strange illness they had barely even heard of at the time.

All I want this Valentine's Day is a donation or even a share of my GoFundMe page :)

Go Fund Grama Shannon

Someone To Lean On

As usual, leaning on my beautiful daughter for support.  She has turned into such an amazing woman throughout all the struggles we've been through together.  She is a caring and loving person who just wants to help people, and she's pursuing that dream.  She officially became a CNA this month and works at a psychiatric hospital, and will be returning to school to pursue a nursing degree.  I couldn't be more proud.

This photo was taken in 2010 on a trip we took that summer after I began using my walker to try to get stronger and hopefully walk again someday.  That actually went quite well for a few years until my hysterectomy in late 2013 when all of the new issues began.  I have fought and fought but whatever is causing problems now seems to keep winning.  I'm still fighting!

(Originally posted August 12, 2010)

Mom and mini

Today Is Good

This photo was taken in August of 2014 when I still felt "good".  Back then my legs were still weak, but at least they were flexible and didn't hurt.  This is the trail that I go to in the summer to workout.  My only source of cardio is pushing in my chair for miles and miles, so that's what I do.  Lately, I've been in so much pain and my legs have been so bad that I can barely even do this one thing that I love so much.

Last night's bath seemed to have helped, although I'm not sure if it's that or the fact that I took double the dose of my muscle relaxer.  I'm sure it's both, but mostly the medicine.  I had to sleep.  I couldn't be a tired, cranky, painful grandma for my grandson today.  He will be here in a half an hour, and since I slept I can't wait!

What Happens At Grandma's Stays At Grandma's

I feel fortunate to still be able to take care of my grandson while my daughter goes to work as a CNA.  My hope is that I stay well enough through all of this to continue to care for him.

Just Got The Call

I just received a call from my neurologists office that my insurance approved Mayo, and now Mayo is reviewing my files.  I should hear in 10-14 days if they've approved me and when my appointment will be if they have!

Please, oh please, let them approve me and take me in and figure out what ails me! (praying)

Back To It

I've decided to get back to my blog.  It's been a very long time since I've posted anything worthwhile, but I had good reason.  I think.

I spent the last 5 years or so grieving yet another loss.  I moved from Florida back to my hometown in Minnesota, and in the process went through a ton of trials and tribulations -- to put it mildly.  I had no money, no car, a shitty basement apartment.  But, I had a roof over my head and food to eat (barely).  I've spent these years working my hardest to get back on my feet, and so far, so good.  I am slowly getting back on my feet figuratively as well as literally, although I've suffered a few setbacks to the literal aspect.

Thanks to a person I will no longer refer to as having any relation to me, I have a nice car.  I live in a great apartment on the top floor in downtown.  It's fully handicapped accessible all the way through to the bedroom closet, and the rent is cheap.  And, I've been back to work and doing well.  The biggest drawback I've had recently has been my health, once again.  I am dealing with tons of pain, tightness, and loss of range of motion and flexibility.

Although, I do believe it's because my legs are coming back.  After nearly 18 years, I truly believe something has healed and I am fortunate enough to be gaining full use of my legs again.  After 18 years, anything that comes back to life is going to be mad and not feel very good.  I see the doubt on my doctor's faces when I mention that idea, but I don't care what they think or what they think they know.  People in comas have come out of their coma after 20 years by some "miracle", so why can't my legs do the same?  They can.

The tightness I've been feeling, at first, I thought was spasticity, but now I am convinced it's tone returning.  They are extremely sensitive to touch and jump and spasm when touched, and that just makes me think well "duhhhh!"  I can feel more than I could before and those nerves that were dormant for 18 years are now alive and awake.  I'd jump and flinch if I hadn't moved in 18 years, too!

I am reminded every day of my favorite doctor, Dr. James Burnett, and how after asking me how I was doing and I would say "my back hurts, but other than that I'm good", he would say "well, at least you can feel it!"  That's exactly what I say to myself every time the pain in my legs gets so bad I don't think I can handle it.  I just shut my eyes and remember him and say "at least you can feel it".

This all started in my hips at the beginning of this year, and has since progressed down to my thighs and knees.  This tells me it's moving down, which is what it should do if there is a nerve that is healing.  This is great news.  I am interested to see where I will be in another couple of months!  I'm very scared, but I'm very, very, very hopeful and happy that my gut keeps telling me I'm getting my legs back.  I always listen to my gut, it's never wrong.

Long Time Gone

Wow, I realized today that I haven't posted anything worthwhile in a very long time, yet again.  I don't know why I keep failing so miserably, but I would like to apologize again.  Life just seems to go by so quickly anymore.

I'm not sure how I'm doing, exactly.  I feel like I'm at such a stale-mate.  I am having a really hard time getting motivated lately, and I don't know if it's because of a little bit of depression, or maybe health issues, or both.  Whatever it is, I want it to stop, and I want to feel good and have energy and want to do things again.

I had an idea today for something that might work at getting me moving around more.  I've been addicted to Pinterest lately, and I have a board called "Food" that has upwards of 300 recipes on it so far.  I was thinking I would start with at least 1 recipe a week; make the dish, take a picture of it, post it here with my awesome wordiness attached, and then move it to a new board called "Finished", or something along those lines.  I think it might be a good way to get me out of the house to get the ingredients, then of course moving around the kitchen to create whatever fabulous dish is up for that week, and maybe even some more exercise if I decide to share it and bring it to friends so I don't end up 300 pounds by the end of it all.  And if I really got motivated I could do more than 1 a week, maybe even 3!  I don't know.  It's an idea.

What I do know is something needs to change for me, and I'm the only one who can make the changes.  So, I better get my ass in gear and figure out what I'm going to do.  I'm starting to get a little moldy like my apartment.

Eight Months

It has been eight months since last summer when I ditched the chair and went on my long vacation using only a walker for the first time.  I can still remember how hard that was, and how scared I was.  When I got home, I got rid of my house chair, but used my outside chair for trips to the store, etc. 

When I moved back up north, I left even that chair behind.  I have been walking with just a walker and have had zero access to a wheelchair for 2 1/2 months now.  I still use a scooter for trips to Walmart or the grocery store, but I still have to walk in and out of the store, and if I want to go somewhere that doesn't have a scooter, I have to suck it up and do my best.  I do think my endurance has definitely improved.  Maybe not as fast as I would like it to, but it has, and I know my lower body is stronger.  I can stand for much longer periods of time without getting so extremely fatigued that I have to sit down or I will collapse.  In fact, I am in shock at how long I can stand now.  As long as I shift my weight now and then and change my posture, I do very well and only continue to improve.  I have also noticed a big change in my ability to balance. 

There is just so much that goes into learning to walk all over again, and after twelve years of not walking, I guess my body is going to need some time.  Eight months seems like a long time, but in reality it's just a blink.  It has taken me this long to regain better balance, endurance, and very minimal strength.  I think now that my balance and endurance are coming back, I will be able to work more on the strength part. 

I am even considering using my forearm crutches at home.  I am certainly going to take them out and give them a try, and if I feel I can maneuver them fairly well without falling, I will use them on a regular basis.  They are much harder to use, but that's kind of the point.  Push the body beyond its comfort zone so as to build strength and better balance.

I'm also getting much more used to going out in public with my old grandma walker :-)  It was tough for a while, but it has become such a routine for me that I hardly notice anymore. 

Spring is just around the corner here in the Arctic Circle, and although I have really enjoyed the snow and change of scenery, I am looking forward to Spring now, too.  Spring means less ice to maneuver and more warm weather to be outside more :-)  That is after "Big Red" (the Red River of the North) gets done swelling and possibly flooding!  March melt is here and Big Red is on the rise! 

Perspective

Today marks nineteen weeks that I have been walking, and I am definitely seeing changes.  Changes not only in my muscle structure in my lower body, but also in my balance, coordination, and strength.  It seems that just when I forget how far I've come, I meet someone who puts me in my place without realizing it, and makes me remember how lucky I am.

Last night I met a family who is dealing with some big challenges.  It made me realize that there are so many more people in this world who are dealing with so much worse than me, and it made me want to fight that much more, and that much harder, because I would feel like I'm taking advantage if I don't.  How dare I slack off or want to sometimes give up when there are others who would give anything to be where I am right now.

I am in no way discrediting myself or my challenges, but it's nice sometimes to get thrown a little perspective.  It also makes me feel good to know I give some people hope, just as others have given me.  I know how hard it is to go through such a drastic, life-altering thing, and if I can give back in any way, it makes it all worth it.  Paying it forward, that's what it's all about.

Elizabeth, if you're reading this, I don't know your details, I only know the little you told me, and the sadness and stress in your eyes.  All I can tell you is to keep your chin up and keep fighting for both yourself, and your husband.  You touched my heart with your determination and resolve, and I truly hope that you and your family can enjoy whatever time you have left with your husband;  be it one day or twenty years!  No one knows why life is full of such sorrow sometimes, but all we can know is how we choose to deal with it.

I will keep you and your family in my thoughts and prayers, and don't be afraid to keep in touch!

Sometimes all we need to keep going is a little perspective!

Day 320: Four Months Walking!

Today marks four months since I got rid of my house chair and have been walking with a walker!

I know that I set a new goal and then kind of dropped off the face of the Earth, but I have been dealing with everything that comes along with walking versus using a chair, and life in general.  I got sick of hearing myself talk, and just haven't been able to come up with anything to say.  Maybe that's what writer's block feels like?

But, I figured today I should say something since it's the four-month mark. 

I think I'm going to take down the newest goal and give myself a break until the new year.  With everything that is going on in my life right now, it just adds too much pressure.

After four months of walking, I definitely see improvements, although small and slow-going.  Every time I feel like I'm taking two steps forward and four steps back, I remind myself that I spent 12 years in a wheelchair and it's going to take some time.  I can't help but be impatient sometimes.

So, here's to four months!  Hopefully in four more months I'll have something significant to say.

Day 292: Three Months!

I have been walking for three months!  It just doesn't seem like that long.  I have definitely progressed, and although I haven't quite progressed as much as I had hoped, it's still progress and I am thankful.  I know I still have a long road ahead.

Day 289

This newest goal is going to be a huge pain in the ass.  It's too easy to fall behind too quickly, and since I have run out of Aleve and haven't had time to get to the store to get more, the pain is too intense to walk much more than 400-600 steps a day.  Ugh.

I'm not really complaining; I set these goals on purpose to push myself.  But, like anything, when the reality sets in it's a bit of a shock until you get some momentum going.

I'll get in the groove.  I just better do it quickly, or before I know it January will be here and I won't have made it more than halfway.

So, starting Monday I am stocking up on Aleve and preparing for the months ahead.  I certainly have plenty of projects that will help me get lots of steps in, so once I get numbed up a bit more I will tackle those and kill two birds with one stone.  Hopefully by Christmas my living room and master bath will be finished, and I will be that much closer to the 100k mark!

Step count today:  585

Steps I'm behind:  3,735

Day 285: Eleven Weeks!

Today marks eleven weeks with no chair!  Woo Hoo!




Step count today:  672
Steps I'm behind:  2,006

Day 284 - 81 Days Left

I think I'm feeling better, finally.  I certainly have more energy this morning than the past few mornings.  I just hope it stays with me so I can get a decent step count in today!

Step count today:  973

Steps I'm behind:  1,502

Day 283

Since the inception of my latest goal, I am already falling behind in step count, but this could not be helped.  I have been sick with an annoying cold the past week or so, and it really decided to kick my ass this weekend.  My big plans of yard work and cleaning went right out the window when I woke up Saturday morning and realized I had zero energy.

I didn't have that much more energy this morning, but my coffee is kicking in and I will probably take some cold medicine to get me through the rest of the day.  I really need to get in as much walking as I can today, it will be easy to fall really far behind on this goal, it's a big one!

Step count today:  388

Day 282

Step count today:  424

Day 281

Step count today:  359

Day 280: New Goal

After some not-so-careful thought, I have decided to reset the ticker and attempt 100,000 steps by Jan 1, 2011.

There are 85 days left in this year, which means I would need to walk 1,176 steps each and every day in order to accomplish this goal, and that is just what I need to do to push myself even further toward walking unassisted.

I am already walking a bunch each day, so I really need to up the ante and kick myself in the ass (so to speak).  I also plan to add some strength training, but it's just too complicated to try to make a ticker for that... !

At this point, if my triceps get much bigger, I could just have them transplanted into my legs somewhere for added strength!  I already have massive arms for a woman, I don't really need them to get any bigger.  At least now I am using different muscles than when I was in the chair and they are getting balanced out, but enough is enough!  It's just all the more reason to get those legs stronger and take the focus off my upper body.

So, here goes!

Step count today:  1058