It's been a while

I realized today that I didn't update this the entire month of October. It's now been 16 1/2 weeks since surgery. Kind of hard for me to believe that it's been that long as it's always on my mind. Because of that I feel like the time has really flown by. The last four weeks have been a challenge. I came out of the brace at 12 weeks and was so excited to really get moving with physical therapy that I ended up doing more damage then good. I felt good and being out of the brace was so freeing. Walking, exercising, strengthening were all so much easier without the brace that it gave me a false sense of wellness. Unfortunately by the end of the first two weeks I was in an incredible amount of pain again. I pulled a groin muscle, further aggravated the constant discomfort in my left shoulder which has been partially frozen from the brace and the most painful part was that I developed tendinitis in my right hip abductor. All of this kind of seemed to hit me overnight and side lined me from therapy for over a week. Since that time I am slowly getting back to where I was before the problems started and continue to go to Physical therapy twice per week and do my home program on the other days. Lesson learned? 

This week I am seeing my surgeon and I am anxious to hear what his thoughts are on my progress and if he feels I can attempt to return to work in some capacity. This has literally kept me up at night as the time draws nearer. I know how physical my job is and how low my endurance and strength still are. I know that I need to return to work yet my body struggles to keep up with my mind. Again a case of feeling like I can do things before I truly can. I am hoping that between myself, my employer and my surgeon we can come up with a plan for my return. 

These last few weeks I've been tearful, restless and scared about the future. I worry, I worry all the time that people expect me to be better than I am. No one says that nor do I think they would but having a invisible illness if you will is very trying. I try to keep up a brave face and a smile but it is oh so tiring. A case of wishing you could let someone step into your shoes for one day. Today I spoke for 90 minutes with a lady who needs the same surgery that I had. Oh how I wish I had someone ahead of time to prepare me for what was to come. I was brutally honest with her, not to scare her but to prepare her to go into this knowing how hard it was going to be. There is just no information out there to be had. This is not a common surgery in adults therefor the information and support is just not available

I will keep reaching out via social networking, through my physican and offering support and guidance to anyone who needs it.

It's a long, long road and I constantly need to remind myself how far I have come.

waiting is not my strong suit

16 days, that's a long time to worry about something. Especially if that something is as big and scary as a whole lot more surgery and recovery. My SLU surgeon uses EPIC just like we use at Mercy, unfortunately while they are essentially the same program they do not "talk" to each other. SO while I had to wait 5 days from my last visit when he essentially told me something could be very wrong till the time I could get my CT scan done I then had to wait a whole additional week for him to get the results. Maddening, as I knew those results were probably interpreted and in the system within hours of having the scans

Sadly sporting a hospital band again the day of my CT Scan

 A glass of this miracle drug can take the edge off the worries ;-) Oh and the pain too, just like John Wayne taking a shot of whiskey in all those old movies.

So finally after all this waiting I have an answer, well two actually except neither one is a real answer to the question.  Essentially the CT showed everything in place and no broken hardware which is a huge relief except that we still don't know what the heck is popping. My surgeon at Mercy says he is moderately alarmed and that nothing should be making a noise but he doesn't feel like we need to go back into surgery unless I start having symptoms. My primary surgeon at SLU feels like if the CT shows nothing and I am asymptomatic then I just keep moving forward with my therapy and recovery while we take a wait and see approach. Ok..........easier for you to say guys than to live with.

So now I am at the 8 week mark in this journey. I feel pretty good and since I can drive now I can get out and go places.

Like taking my sister on her first trip to IKEA

Getting my annual TEAL mani pedi for Ovarian cancer awareness

Having my first pumpkin spice latte of the season on a 90 degree day meant making it a frappucino

spending lots and lots of time reading out here and enjoying the cooler mornings

I started physical therapy this week and it is HARD. Previously I had only been walking for building up my endurance but now they are forcing some of these muscles to start working again. I am planning to return to work in a couple more months so I have to get as strong as possible. My job is so physically demanding and I know there is a potential that I wont be able to continue in the same area but I certainly am going to give it my best shot. I miss my co-workers!!

My latest find while out antiquing one day. I'm in love! My very handy hubby took it completely apart and it's currently at his work getting a complete makeover. Stay tuned for the finished project.

CRAFTING

CRAFTING

AND MORE CRAFTING! I had to get PAPA in on the action for this project as you don't ever turn your back on two little boys with paint

This was a plastic framed picture of Jesus in a former life. I rescued it from Goodwill. Is it a sin to paint over Jesus? 

making white chocolate strawberry waffles

my lil super heroes slept over

So that's all the news for now. Leaving you with some sweet shots from Grandparents day at Waylon's preschool this week.

Instinct, premonitions, gut feelings

I've had some worrisome symptoms for about ten days now. My back is popping or clicking, its's hard to describe. It's similar to if you intentionally crack your back but in my case it's anything but intentional. I had touched base with the RN at my Dr office when it first started and she assured me that it was probably the last movable section of my back (L5-S1) that was making the noise. This area was greatly debated prior to surgery as to the pros and cons of fusing. The disc itself is in good condition and the surgeons reason for not fusing me all the way to the pelvis was to give me some movement still below the waist. I knew going into this that this particular area would wear out, but we were hoping that it would last me close to ten years before more surgery would be needed (although that was wishful thinking on my part).
X-rays were taken today and over all I am on target and doing well except for this worrisome clicking. The Dr asked me to move some as to cause it to happen. He also asked me where I was feeling the sensation. Initially I only felt it at night when rolling over in bed and it felt as if it was indeed in the lower section of my spine. But the last few days I can distinctly feel it in my mid lumbar region, the area that was originally fused in 2003. To my eye when you look at the x-rays it looks as if the hardware on the front of my spine is actually touching the rods on the back of my spine. He tells me that this should not be but.......

                                       To my untrained eye that's exactly what it looks like.

So after examining me and feeling, hearing it for himself he shares my concern. So the next step is a CT scan as soon as insurance approves it and then we see where to go from here. Indeed he has warned me that I may need to go back in and fix whatever is causing the issue. So what does that mean? I'm not sure and neither is he, it will be a wait and see approach to whatever the CT scan shows. In addition he also told me that unfortunately that ten year plan of mine is in more likelihood only a few years down the road. This final disc is going to wear out much quicker than we anticipated if it's already suffering the load bearing of the 14 levels above it.

On a happier note I am driving again as of two days ago. It's tricky backing up and merging into traffic as I can't look over my shoulder like we all do while driving. I've added some additional mirrors to my side views to help and I am driving like your 90 year old grandma. But it is freedom from being stuck in the house and relying on others to take me places.

I'm also walking a mile or more at a time on the treadmill or out walking about with Ed on the weekends. I rarely have to lie down to rest mid day but still have to sit and put my feet up every few hours.
Pain wise I am down to one narcotic per day and a couple of doses of extra strength tylenol. I start therapy in about ten days and I am anxious to start working on some core strengthening.

So I am back to asking for prayers.  A surgery a few years down the road I can contemplate but re doing all of this in a week or two..........It makes me ill to even think of it.

4 weeks

 This past Tuesday marked four weeks since the day of my surgery. I am happy to say that I feel like I am really turning the corner. I still have quite a bit of discomfort but I am managing my pain with over the counter meds and have only been taking the stronger stuff once or twice at most per day. Mornings seem to be the worst as I think after lying in bed all night my muscles protest loudly at being forced to do their jobs.

Lots of things have happened since I last posted 13 days ago. I am still wakeful at night but find that I am sleeping much longer stretches at a time. I get up and am able to bathe, dress and get around the house independently. I can be alone all day without needing anything from anyone unless I drop something. If I can't pick it up with my reacher than it lays on the ground till Ed gets home. He's come home to have some interesting collections of things lying around.

 I've had a few visitors that have brought flowers, lunch and books. I love the company as it gets pretty boring stuck in the house all day. I spend lots of time out here on the deck soaking up the sun and fresh air. As hot as everyone says it is outside, I am still running cold most of the time since surgery so it feels great to me.

 

In Family news we have had some big developments.

Kristina's best friends through her a early 30th birthday party

and on the morning of the party her boyfriend Clint proposed!! We are so excited to plan this wedding and gain such a great guy as our future son in law. 

The Very happy couple were all smiles all night.

 

 Family pic minus my son and his kids who had already left

 Kristina's bestie's since childhood. They live in Pennsylvania and New Jersey but still manage to see each other every few months.

 Curls for days with these two pretty girls.

And my favorite party pic was of Poppy and I in our matching orthotics. Hers is way cuter than mine. I really need to decorate this thing.

The other big family news is that Jed started Kindergarten this week. I absolutely don't know where the last 5 years have gone. Luckily he still likes to snuggle up to me and hasn't decided he's to old for that yet.

Jeds first day at Bowles. The same school my kids all went to.

 

He looks more than happy to go!!

 

These two had to go their separate ways this morning. They've never been apart in school before.

The morning of the party after I found out that they were engaged I knew I wanted to attempt getting back into my craft room.  It's hard and leaning forward is really rough on the upper muscles of my back. This cup as easy as it looks took quite some time but I was bound and determined to make this for her for her first week back to school.

I LOVE my Cricut!

So in addition to reading, binge watching Greys Anatomy on Netflix (I love the old episodes when Derrick and Meredith fell in love) I am trying to walk everyday on the treadmill. Get back into my craft room and slowly start working on some projects. One of the things I missed the most was crafting so it feels good to start getting some things made, like Jeds first day of school sign.

My incision is healing really well. The nurse in me HATES that I can not see it and inspect it everyday. HAHA I make my husband take pics for me so I can monitor the incision line. I am very hopeful that by next summer and swimsuit time it will be just a faint pink line.

I have complete and total amnesia when it comes to my stay in the hospital. It's truly the craziest thing that you can lose 9 whole days of time. I've been asking questions to my family such as did I eat anything, did I bathe, etc. I am met with reassurances that I was well taken care of but I don't remember any of it.......at all. I have been told there were some extra special nurses on the neuro unit that were really good with me and I hope to be able to take them something and thank them personally as soon as I am driving and able to get there. And I think I probably also need to apologize to them for being such a handful. Drugs and I are a horrible combination and I think that I spent the entire nine days either crying, vomiting or talking complete nonsense. I hope they didn't dread coming into my room day after day......

It's Tursday, one more day till the weekend everyone. Go out and do something really fun this weekend, have a drink for me and enjoy.-Jeanne

HOME

There's no place like home........but it comes with a whole new set of challenges. 

The day I was discharged from the Rehab Hospital I had to go to see Dr Place down at the Anheuser Busch Institute off Grand Ave. And we had to stop at Mercy to drop off my scripts for narcs that we would have to go back and pick up after my Dr appt. The car is tough, getting in and positioned correctly with a brace is tough and the minute I leaned back to be buckled in I knew it would be a tough trip. The brace is worse when leaning back and it presses against my incision line and hardware so even though you'd think reclining would help it only makes it worse.

We made it and I got into the building with just my walker. The place was packed and we had long wait between waiting rooms, new X-rays and finally seeing first the resident, the Dr and then finally standing without my brace for the 15 minutes or so that it took the nurse to take all those sutures out. Without the brace and having been split all the way down my back I have zero muscle tone and my back/abs quiver and shake until it starts to spasm. SO as much as I cuss this brace it truly is keeping me upright now while I heel.

We stopped on the way home and picked up some of my favorite pizza and I got home and snuggled my fur babies for a long time. Goodness I think they really did think I was dead because they do not leave my side at all. 

Going to bed the first night was hard. We have an incredible memory foam mattress but your body sinks into it to conform to you........not good when you have to log roll and reposition yourself every hour or so. I am slowly figuring it out but it was a huge disappointment after longing for my own bed for so long.

Yesterday morning Erica was home with me until around 9:30 and then I was completely alone until after 3:30 pm when Ed got home. I was feeling good and dressed myself, unpacked my bags (with the reacher and lots of work). I realized quickly that I could get around the house a lot better without the walker. I found I was lifting it to get over the throw rugs, turning it sideways to get to certain pieces of furniture, etc. I can see my nurse friends cringing as they read this. But I really felt safe just touching walls and furniture for continued balance. I spent the majority of my day either sitting on the couch with my brace on or taking it off and side lying on it. I probably got up and ambulated around the house every 30-45 minutes. I miss having my wide open handicapped spaces to walk as much as I want at the Rehab Hospital. I wanted Ed to take me for a walk when he got home but was informed that it was 95 degrees out and I probably would have had to turn around quickly. We had dinner then he helped me figure out the shower. Went back to the couch and noticed my Right hip was really starting to give me fits when I would stand or sit. The rehab Dr told me its the nerves between T 12 and L 1 that are causing that pain. My spine is so angry at me!! We've been curvy friends for 53 years and it is not happy about being forced into this new straighter position. Anyway long story short I started feeling nauseated and couldn't get up off the couch alone. Ed managed to get me to bed only to have to deal with a sobbing mess. It's the first time I have fell apart for at least a week. I understand from all that I was one hot mess in the hospital that cried all the time.

I finally cried myself to sleep. Pitiful, right? After a couple of hours of sleep I made my first trip to the bathroom and felt a lot better. I think I way overdid things yesterday and it just completely overwhelmed me at the end of the day. 

Last night was not as bad and although I am still very wakeful and have to get up a couple of times I feel like I got more rest. I was shocked when I woke up at 6:30 and we both had slept that late. 

Hubby set me up with coffee and computer before he left for the day.

I am taking it really slow today. Still in my jammies and I have already had a 30 minute nap in bed. I stayed out of bed yesterday for the entire day and it was obviously too much. My plan is to hang out in my bedroom more today. Sit in the recliner and take breaks in bed. Everything is a time and energy  sucking task as the brace has to be put on every time I am upright and out of bed. It takes some work to get this thing on and off by myself so I can't do anything in a hurry.

So here I am day 17 post op. I feel like I am making progress, I am thrilled to be home.

I am going to treat myself a bit easier and hoping we can go to the Antique mall by our house tomorrow so I can do some walking. I'd too scared to go to a mall and get plowed down by a teenager so the antique mall it will be.

I hope I will be up to visitors in the next week or so as I am anxious to see people.

Happy Friday Everyone!!!

Green means GO in more ways than one

Yesterday I earned my green arm band. It signifies to the staff that I am allowed to walk around in my room without assistance. I still can't leave the room without staff or family but green means FREEDOM! I can't tell you after 13 days how good it feels to be allowed to get up and get things across the room, or take myself to the bathroom, sit in the recliner, etc. 

And speaking of green means go, my catheter came out yesterday morning and I peed as naturally as the day I was born. This was a massive relief as a urologist at the hospital was concerned there may be some damage on the spinal cord from surgery that would have required me to self catheterize myself for quite some time. So THANK YOU to everyone that prayed with me for success. It worked and God is good. 

I'm getting stronger everyday, my appetite is returning and I am ready to go home. As I type they are having my care meeting involving two doctors, the therapists and nursing. The recommendation from all is that I am ready for discharge. One more day ya'll. Tomorrow night if all goes according to plans I will be home sleeping in my own bed with my fur babies and my hubby. I am SO excited. I have been horrible homesick here even though my family has been so good about coming and visiting me. There is NO PLACE LIKE HOME!!

Our plans went a bit haywire, we planned for me to be in the hospital for 7-10 days and then home with Ed for a week and a half before he goes back to work. Well that time ended up being spent here in the Rehab Hospital vs home. So.....Ed goes back to work tomorrow. Luckily for me Erica doesn't usually leave for work till Mid morning and Ed gets home fairly early so there should be only four or five hours that I am alone each day. I will be relaxing, reading and binge watching things on Netflix.

Therapy here is hard work. You have three hours of intense therapy daily and they work you the entire three hours. I have been a total rockstar and working my butt off for days to prove to them that I can go home. It's exhausting and I did not want to come here at all but I have to say it's probably been the best thing I could have done. I don't think that I would have gained this much strength already if I had gone straight home. So once again I have realized that God's the one in charge here and I need to let him lead me in the right direction.

My pain level is getting better. I have started to back off the narcotics with a bit more time between doses. I will still need something for the next few weeks I am sure but it feels good to know that my pain levels are decreasing as I get stronger. And as I am anxious to fill that wine glass that my girlfriend at work gave me I will have to be off the narcotics before I can have a glass of wine with my family.

the glass says 11 oz p.o. qid prn

which in medical jargon means 

11 ounces by mouth  four times

per day as needed! 

LOL

I had a visitor from work yesterday. Mary Boning, also known as the best darn baker around. She not only broke up my boring unoccupied part of my day she brought me a plateful of my most favorite oatmeal raisin cookies. She is such a sweetheart and I am so grateful she came.

So thats it. Hopefully my next update will come from home and I will be one happy lady.

Life in the straight(er) lane

13 days have gone by since surgery and most of them are a blur. I do feel like although I am still on plenty of pain meds, I am emerging from the narcotic haze that follows surgery. I'm not home yet and oh how I long to be there. I was doing pretty well at the hospital towards the end of the first week and was scheduled to go home but ended up having a crisis day of pain that was uncontrolled and they ultimately decided that I needed to move to the Rehab Hospital instead of being discharged home. I went kicking and screaming (really just sobbing in a wheelchair transport van) and arrived 9 days after the surgery. Its a great place and they are doing really good work at getting me strong enough to go home but oh how I long to be there. I am pushing for early next week and intend to be the squeakiest wheel around here till they get so sick of me asking they'll gladly let me go. 

The surgery and recovery itself has been way more than I could have ever imagined it was going to be. I have had a fusion before and had a longer recovery but that was nothing at all compared to this. They wanted to do this bigger surgery on me 14 years ago but I wanted the less involved action then. In hindsight I should have done this in my 30's vs my 50's but it's over now and I am only focused on getting better.

My brace.........while I love that it is literally a shield of armor to protect this very new fragile spine of mine i equally hate it with a passion. I lay in bed and fantazise about ways I will destroy it when it's time has run its course. (about three months). Burning, smashing, running over with a tractor trailer....so far dynamite seems to be the most popular fantasy. Perhaps we will have a destroy the brace party this fall.

The very hardest part of this for me has been being dependent on others for all of my needs. I am not allowed to get out of bed, transfer to chair or bathroom, or walk independently.  It's incredibly frustrating to be lying in bed and not be able to get to something that is only a few feet away. I hate calling the nurses and rarely put my call on. I know thats what they are here for but I hate bothering them, especially with things that are not super important. This morning for the first time I asked my nurses aid to put me in my w/c so that I could get up and do some things independently. I was able to roll into the bathroom and bathe and dress independently (with the help of my reacher which is a godsend). It felt good to be able to do things for myself, I even rolled myself to the dining room for breakfast for the first time.

 There is no therapy at all on Sundays so it's going to be a long boring day. I think my hubby and some of my kids are coming later so that will help. Last night Ed brought me Pasta Con Broccoli from Rich and Charlies. I thought I'd died and gone to heaven. I am just starting to get my appetite back and can only eat small portions at a time but it was wonderful. The brace makes things difficult when eating too as its very restricting. Might turn out to be a good diet aid. ;-)

On a very personal note and only for those that are reading this as they may have to go through it themselves. I still am reliant on a foley catheter for my poor lazy bladder. They tried removing it in the hospital but I was unable to go on my own. After a day or so of being in and out catheterized they consulted a urologist who suggested they put it in and let my bladder rest for another week or so. I am hoping they remove it tomorrow for another voiding trial. Please pray for success as I really don't want to go home with a catheter in place. Although I will say not having to get up at night and pee is a lazy benefit.

So, thats where things stand at day 13. I'll post more when I have anything exciting to add, like going home!! I belong to a support group on Facebook for adults with scoliosis. I thought by writing this blog it might help someone else who is facing this surgery kind of know what to expect. I know I researched like crazy ahead of time looking for advice and support so I hope this is helpful. Thanks for hanging in there if you made it this far and I apologize if you glance at the photos and find they make you a bit ill. HAHA not my intent i promise.

My new much longer hardware and much straighter spine

this however looks like one hot mess to me. Kind of like they dumped the toolbox over into me and then sewed me up? LOL

the section with the screws facing to the left is the original hardware from 13 years ago. 

and this........what can I say. Luckily I am a person that typically scars very well so hopefully it will bit just a thin line running down my back. I have no idea what the two smaller incisions are from and I am anxious to hear the surgical details to see what those areas were used for.