Wheelchair Hikers

"Figure out what you want to do and then worry about the details later. The details can always be worked out one way or another."

This statement hit me because it is the complete opposite of how I have to go about my day. For me, I wake up with X amount of energy and I have to choose my activities with that amount in mind. I can do two or three activities that use less energy like wash and dry a load of laundry. Or I can do one activity that uses all my energy like get in the car and visit someone.

But the statement speaks to me. It says- stay in faith, set your goal and go. Don't worry that you can't see the path, it will pave itself along the way.

Dreams

It has been a long time since my last post I know. I have written a couple and they're sitting on the dashboard in draft mode. That means I typed them but then didn't publish. I read them and think "too whiney". So they sit.

What's new? Nothing really. My little girl is 2 1/2 and pretty much the center of my universe. Her personality comes through a little more each day and she is quite the delightful mix of stubborn, silly, hysterical, loving, and tyrannical. She keeps me on my proverbial toes. Her mind is a sponge and it is just too cool to watch her develop intellectually. I've got a smart cookie on my hands!

Emotionally I have come a long way. Not being able to return to work was a punch to the gut that continues to ache. With time it's getting better. The idea of it is feeling more normal. When I am asked any questions about my employment, rather than struggle with how to answer, I now say that I'm a stay-at-home mom. Seems simple enough, just entirely disingenuous as that was more an outcome than an objective. But it works. It sure tastes sweeter coming out of my mouth than "I'm disabled and had to leave my job". It's all about perspective.

But I have the dreams. Each one is slightly different but the theme is the same. It's my first shift back to work after being gone for a long time. I know a lot of the nurses there but there are a lot of new nurses who don't give me second notice. The older ones seem happy to see me and I know I'm being watched behind my back. I'm moving well. I walk quickly, effortlessly, gracefully. I'm standing and not needing to sit down all the time. I'm thinking to myself, "this is great!" and "I shouldn't be able to do this!". I am a bit disorganized and out of rhythm but I'm okay with that because I've been gone for so long. "I'll be back up to speed in no time" I tell my self confidently. I reach the end of my shift and I am tired but feeling good. A little overwhelmed but glad to be back. Ready to go home and refuel but eager to return the next day.

I was reflecting on these dreams the other day and of course I got emotional. It's not fair. Well duh. I angrily wished I wasn't having the dreams because in the light of "moving on" it seems like cruel irony. But I retracted the wish right away. How would I feel if I stopped having the dreams? Or worse, if in my dreams I'm in the wheelchair. So far, in all my dreams I am mobile. I am able to do things in my dreams that in reality are impossible for me. My dreams are a chance to feel normal and to feel free from my body. Therein lies the power of our minds.

I'm working on finding my place again. Being a stay-at-home mom is awesome! I continue to find little clues along the way that God's got this one. He's not going to leave me dangling; feeling like the rugs been pulled out from under me for good. It's all covered in the Master's plan, I just need to keep the faith and my eyes open.

Silver Linings

It helps to look for them in situations that are less than desirable. Sometimes they aren't easy to see, and other times they just seem to fall in your lap. I can't think of a time when a silver lining was more apparent then one I'm about to share with you.

The reality of not being able to return to work was and continues to be harsh. I loved my job. Providing nursing care to hospitalized infants was my calling and why I pursued my RN license as a very young woman. I saw myself retiring with 40+ years of service as a NICU nurse. I can think of no other way I would have rather spent a career.

Here's the silver lining. If by some miracle I would have been able to return at the end of my medical leave of absence, I would have been back for two weeks before news came out that my position would be eliminated at the end of the year. If I had been able, I would have had to bid for a position with more hours and possibly on a different shift. Since I likely wouldn't have been able to work more days (this is the miracle scenario, ya know) I would have had to "resign" any way. Bah humbug!

Ok, so how is THAT a silver lining? I had to think hard about this before it revealed itself to me...

The utter anguish felt among my coworkers is indescribable. With the exception of but a few, lives have been turned upside down as hours and shifts have been dramatically changed. Most lost their jobs and have had to take different positions. Some had their position completely eliminated and some were not offered a position at all.

So, I was spared from the pain. Instead of killing myself to get back to work to have my job cut after just a couple months, I've had a little bit of a head start getting used to the reality of not being able to work.

Life is funny that way with all the twists and turns, sharp corners and dead-ends. God has a way of working things out. I have faith that He has a reason for my life and the way things are going for me with this damn disease. I'm a nurse at heart even if I'm not on the floor right now. I pray that He continue to reveal the silver lining of every storm cloud that dumps on me.

A Snail's Pace

The day I've been dreading came last week as I have had to resign from my position at work. My official last day is the last day of my medical leave on the 23rd. I’ve cried my eyes out too many times to count and it still hurts a lot. It’s hard to say goodbye to 11 years of working my dream job, *my calling*, and not have a choice about it.

It’s getting a little better though. I’m moving on emotionally at a snail’s pace, transitioning from “what was” to “what is”. It’s one of those things. You can either wallow in self pity and make everyone around you suffer, or you can pick up, suck it up, and put a smile on your face and make the best of it. It’s a lousy place to be in and I pray that time will heal my heart and I can find new joy and new meaning in new things. My frame of mind is moving me toward being joyous that I get to raise my daughter and be with her all the time. I have lots of ideas planned for us to do when the time is right and I’m excited about it.

If you think about it, say a prayer for me. That God will help me to see His plan and the big picture. That He’ll help me to be at peace with something that right now, just feels pretty rotten.

Nag nag nag...

I know it's been a while since my last post. To be honest, I haven't felt particularly inspired to share.

Let's see, last week I had another birthday. I appreciate all the greetings I received! I had to laugh at myself because I use to think my birthday was such an exciting cause for celebration (it's all about me). But this year was different. I almost forgot about it within just a few days of the date. Funny how perspective changes with each passing year.

One week ago, I started a new medication (released in March of this year) called Ampyra. This is a breakthrough medication as it is the first to treat a symptom of MS. Studies showed an improvement in walking speed for about half of individuals taking it. I've tried so many meds where I either had no effect or things blew up in my face, that I have reserved exuberance for the sake of preserving my sanity. So far, no side effects. Strangely enough, I may be experiencing a slight decrease in spasticity which is not a listed benefit of the drug.

Fingers crossed, another breakthrough medication will be approved by the FDA in September which my neurologist is very excited about prescribing for me. It is called fingolimod and will be the first in a class of oral disease-modifying drugs i.e. not an injection! What happened to my hopes of receiving Rituxin? Well, I'll take what I can get, and the availability of Rituxin is further off in the distance.

The Lord gives me enough grace to make it from morning til bedtime, and the next day He gives me a fresh dose of grace. So I just keep on truckin'- taking one day at a time.

A good day

I completed my third daily IV steroid infusion this morning at the clinic which moved to Allenmore Hospital in April. I am happy about the move as it is much more convenient and pleasant for the patient. I'm feeling much stronger today, able to take several steps without my walker. Steroid "edginess" is at minimal level. The glow in my face is a nice change from the pale and tired look. I'll feel better when the temperature tones down just a touch as heat+MS+steroids does not a happy camper make out of me.

After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.

In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.

I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.

Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)

A huge milestone

I am 6 weeks post-op! This is an exciting time for two reasons: I am infection-free, and I can resume lifting more than 10 pounds (i.e. my little girl)!

I have SO much to be thankful for.

First, that recovery has gone as well as it has. No infection, no major complications, and improvement in my mobility. Immediately post-op, I was 100% wheelchair dependant. Now, I am 98% walker dependant, 2% unassisted. I haven't needed to use my wheelchair for several days now. I have a new ankle brace to help me walk which is taking a lot of getting used to, but I am optimistic that with it I can gain confidence in my steps.

Second, that I am able to parent my child on my own. I am immensely grateful to all the wonderful people who came to my house to care for her and help me during my recovery. 6 weeks is a long time, and it boggles my mind that it all came together the way it did! I am thrilled to be "on my own" in caring for her, though, she is more obstinate now than she was before surgery. Yikes!

Third, that I have so many people praying for me and thinking positive thoughts! It is difficult for me to remain as positive as my onlookers, until I look back and assess how far I have come.

Now if only I didn't have to struggle through the physical therapy exercises...