high maintenance...

I have been feeling a little frustrated lately with all the things I'm having to do to keep my lungs working properly, on top of all the other day-to-day things I have to do to get my back stronger and healthier. It is just another thing in a long list of daily tasks that albeit not life threatening, disabling, or all-consuming, they add up to a lot of annoying maintenance calls. It's something like being nibbled to death by a duck...not too painful, just annoying.

Bye bye 2 stories!
I was talking with my husband about this other day, laughing about how "high maintenance" I am, and how much I hate being that way. I'm not the fun high maintenance, getting my hair and nails done every day. No. I am the "on-a-first-name-basis-with-the-CVS Pharmacy-staff"-high maintenance. I am the "need special sheets, pillows and blankets" for my asthma high maintenance. Or the "I need to buy a new bed because I can't put said special sheets on my low platform bed because I had scoliosis surgery" high maintenance. And while I can laugh about it, and see that compared to many, my daily struggles are not as bad as a lot of people, I honestly still get annoyed. And if I'm doing something to get one area under control, like my asthma, something else is bound to go wrong. For instance. I'm taking 4, count 'em 4 corticosteroids right now to try and get my asthma under control. But guess what happens when you're taking that many steroids orally for an extended period of time? Thrush. Yep. Got it. So now I have to take a medicine to combat thrush 4 times a day...on top of the 6-8 doses of steroids every day...awesome. And that's just the first example off the top of my head.


Hello one story!
The other fun thing about being medically high-maintenance is the COST. I get to spend all kinds of money on fun things like inhalers, nebulizers, back braces, bone growth stimulators, and x-rays. We might as well have a insta-deposit directly into the CVS Pharmacy. And don't forget about the brand new special sheets, pillows, and blankets I bought last week. And I am seriously considering buying a whole new bed after we move this weekend. What's that? Oh, yes, I forgot to mention...we are moving. Why? Because we currently live in a beautiful 2 story home. And my high-maintenance back needs a ONE story home. So we're moving. I'd say that's as expensive as my high-maintenance needs get!

When I add up how my 4 surgeries cost almost $750,000 or how I have to plan my meals around my pill or medication doses...I just sigh. But then I remember that even in spite of all the annoying things I have to remember to do, or not do, I'm blessed. I know that it's amazing that we've been able to afford all the things that I need to breathe and stand up straight. I'm blessed to have family and friends who understand that I need to stop in the middle of the meal and pop a few pills, or lay down when my leg is bothering me. And I can laugh about the fact that I have a walker and a raised toilet seat in my garage...but I'd still take a week or two of that other high maintenance lifestyle!


pillow talk...

It turns out, there are some upsides to having large acreage of numb skin on my back. I discovered this yesterday, when I had to have testing done to see what exactly I am allergic to, and they proceeded to scratch my entire back up with all kinds of nasty little allergens. I didn't actually feel any of the scratches, though I did feel some itching later after they let it sit a while. Of course, the back skin test didn't show ANY allergy reactions...which I'm not surprised about at all. If there is a test to see if I have something to verify why I am ill, in pain, etc, that test will come back either completely normal or inconclusive. And per usual, that is what happened yesterday. So then they pulled out the big guns and tried injecting the allergens a little deeper into my skin, this time using my entire arm. Astoundingly the test showed what I was allergic too!

I am allergic to oak dust something or other, and THIS:

Disgusting little dust mite-arachnid types that love to live in your mattresses and pillows, and live off our discarded skin. YUCK. The funny thing is, we have a memory foam mattress which is a lot less appealing to dust mites than the regular kind. And up until I had my surgery, I slept on a memory foam pillow.

But guess what? After the surgery, I couldn't use my memory foam pillow any more because it was too thick for my neck, and put too much pressure on my cervical vertebra. So I grabbed a super old, flat pillow out of the closet (or somewhere, I'm not entirely sure...) and have been sleeping on that for the last 8 and a half months. 

Another fun fact, dust mites also love comforters, blankets and sheets. Guess what I have been doing a whole heck of a lot less of since I had the surgery? Changing my sheets and washing my blankets! I used to do it every week, but after the surgery it has become very hard for me to do as I have one of those Asian style platform beds that is very low to the ground, and therefore also very far away from me. Our house cleaners change the sheets for me when they come every other week or so, but they never wash the comforter and I never thought about how I needed to be doing that. 

So, the conclusion my asthma doctor has come to is this: I had the surgery, and when they moved my lungs it caused them to constrict, and become a lot more sensitive to allergies than I ever was before. At the same time, I stopped sleeping on my memory foam pillow and started using an old, probably dusty pillow. The sheets haven't been washed as often, and the blanket hasn't been washed until yesterday (after I had my freak out about how disgusting dust mites are). So all the while, my poor lungs have been trying to fight off the allergies and has caused my asthma to kick into high gear, while sleeping every night on the very thing that I am allergic to.
I will probably have to get dust mite resistant blankets and pillow cases, and change my sheets every week. But first thing is to find a pillow that is memory foam without being too thick. 

Ah the joys of scoliosis. The funny thing is, if I hadn't had the surgery, I would probably have at some point lost a lot of lung function as the spine continued to invade the space in my chest that is meant strictly for breathing. But because I had the surgery, I am having trouble breathing. And round and round it goes...

I am happy to have an answer as to why I've had such a hard time since the surgery. And, as far as allergies go, this one is very easy to manage. I was worried I would be allergic to this little guy, and I knew there was no way I could "lessen my contact" with him! 

take a deep breath, part 2 or "how I WAS right after all"

I posted a few months ago how my asthma symptoms seemed to have been kicked into high gear by the surgery. (Click Here to read that post.) Well, I've been doing all the things my doctor told me to do, ie. 2 oral asthma medicines plus 4-6 albuterol treatments via the nebulizer every day for the last few months, and they don't seem to be working.

map of pollen rates around the country
They were working, at least they seemed to help a lot when I first started taking them. The tightness in my chest seemed to lessen, and my hacking cough went away. But over the last few weeks, all my symptoms have come roaring back, to the point where I am coughing all day and the nebulizer doesn't make me feel any better.

So my general practitioner said I needed to go see an asthma specialist. I went for my first appointment today, and guess what? I WAS right about the asthma being related to my surgery . At least, that's what the asthma dr. seems to think. (I wanted to jump up and say "I am genius diagnoser after all!" when he gave me his opionion, but I knew any jumping or shouting would result in a hacking cough so I kept the proclamation to myself.)




This is what he thinks. First of all, he believes that when my lungs were gently "nudged" during surgery, they became irritated, and probably started to constrict. Then when the spring came, just as I was out walking and becoming a little more active, the air was full of sticky pollen that just loooves asthmatic lungs. The pollen further irritated my already restricted airways, and caused the asthma symptoms of coughing and the tight feeling in my chest.

He also thinks that another result of my surgery, tight back muscles, has further irritated or exacerbated my asthma. Because my back as a whole is tight, he thinks it has been harder for my body to relax, and take the deep breaths we need to expand our lungs fully.

So...first of all, I wasn't crazy. Second of all, what does this mean? Well, for starters, I'm now part of the lucky group of asthma sufferers that has to stay on top of their asthma every day, all year round. You could say I've graduated. I will probably have to do a lot of stuff to get the asthma under control, and that is why I'm going back in a few days for further tests. We'll have to figure out what I'm allergic to specifically and see if I can do anything to limit my exposure to those things. Before the surgery, I just took an allergy medicine with a decongestant, and that did the trick. Now, I'll probably need a lot more than that allergy pill to help my lungs fight off the things that irritate them.

my nerdy self in the 90's
Super. One more thing to take care of. On the bright side, I'm not in as much pain as I was pre-op. So, I have to look at it like, although my asthma getting worse because of the surgery is frustrating, it is well worth it to be in less pain, and be able to function like a semi-normal person again.

I have achieved the trifecta of nerdom: extreme near-nearsightedness, scoliosis, and asthma! All I need now is a pocket protector and a degree in physics.






the mother of invention...

I shared with you all a while back that my husband and I are in the process of trying to adopt. We have finished all our paperwork, and are currently waiting on the approval of our home study. (To read more about why we are choosing to adopt, click here.)

I have really been enjoying the process of preparing for a baby. Just thinking about one and being able to say realistically (and Lord willing) we should have one by the end of next year makes my heart skip a beat with joy. But while I've been excited about the process, I've also had my share of worries about the sheer physicality of taking care of a child. I was a full time nanny for many years, for babies as young as 3 months old to teenagers. I've had so much practice, I can't delude myself for a moment to think that it will be easy. And with my new spine, I am sure there will be many challenges added to an already challenging situation.

One of the things that has concerned me the most has actually been how in the world I will get a baby in and out of a crib, before they can stand on their own. I have talked with mothers on the forum who have mentioned that it is very difficult. I wasn't sure what to do about it, and I was worried about the strain it would put on my L5 and S1, to bend over that far and pull someone weighing 20 lbs or more up and out over that bar. I had been looking at the few cribs that still have a movable front panel, but I really didn't like the reviews or the way they didn't seem sturdy. But a crib that doesn't have a movable front panel means I would have a very difficult time getting a larger baby in and out, once we start lowering the mattress.

So I have been worrying, up until this past Monday. That was the day my husband and I went to a furniture store recommended to me by one of my best friends here in Orlando. I had been looking for a mid-priced furniture set (somewhere between the cheap pressed-particle board sold at Wal-Mart and the overpriced particle board sold in most furniture stores), when I noticed how nice her set was. She told me where she bought it and after seeing how well it had held up after 2 children, I knew I had to go check out the store. When we got there we met the owner of the store and he proceeded to sell us on the reason he's managed to stay in business since 1990. He sells good quality furniture, at a reasonable price...with his secret weapon...the gate.

What is the gate you ask? Well, for someone with a spinal fusion, it is a dream invention. Without compromising the safety of the baby inside, the patented gate quietly folds down and snaps back into place, allowing the parent to reach down into the bed without straining their backs. It even has a safety feature that prevents little fingers from being pinched!

I had to restrain myself from hugging the man. I didn't even know this existed until Monday, and now I know I can't live without it! I may have a lot of other challenges ahead of me when I am blessed to be a mom. But finding something like this, that I can afford, here in my own city, well... it gives me hope and encouragement. I tested out the product, bending to reach the baby doll they had with the mattress at its lowest setting. I could do it! It will probably still be harder for me than most people, but I can do it, and I don't have to worry about that part of it anymore.

When I'm a mom, I think I will have to find some creative ways to do a lot of things...and I will probably have to be more careful than a lot of moms about a lot of things they probably never even think about. Like getting a baby in and out of a car seat or washing them in the tub. I will definitely need to adapt.

But as far as the crib situation is concerned...I can be just like everyone else. Now...if I can just find the baby to go IN the crib...I'll be all set.

P.S. If you live in or near Orlando or Tampa Florida, and you're in the market for baby furniture...check out their 2 locations. You won't be disappointed! http://www.crib4life.com/

Happy Update!
We found out late yesterday afternoon that we are officially Home Study approved in the state of Florida! That means we are ready to adopt...if you want more information, you can visit our online adoption profile here. It would be a great help if you could pass that little profile along to as many people you think would be interested to know about and pray for us. The more people who know we hope to adopt, the better. Please keep us in your prayers! Thanks!

full circle...

Last week my husband and I did one of our favorite things we do together...that is, going to a concert. We both love music and we try to go to at least one concert a year, sometimes more depending on who is coming to our area.

The special thing about this concert in particular was that 4 years ago we had planned to see the same group. We had bought the tickets, and were eagerly waiting the date we would get to see them play live. But at that same time my leg pain was continuing to get worse, and my search for a scoliosis specialist who could help me was intensifying.

The show was in October...and I ended up having to have my first surgery 2 weeks before. It was just one of the many things I missed out on thanks to my scoliosis and my herniated disc. Little did we know that I would miss out on vacations, trips, work, jobs, church, relationships, and many other things for the next 4 years.

So when we saw that they were coming back to our area, we both were ecstatic! Not only was I feeling the best I have felt in 4 years and feeling up to standing or sitting through a long, live show, I was able to drive us the 1 and a half trip to the show. As I drove down the road, we both felt the massive and positive change that has happened not only to me, but to US. When I missed out on something fun or important, he either had to go by himself and miss having me there, or he would stay home and miss out on it too. It was a wonderful sign post in our journey. We have come through so much together, we appreciate being able to do something as simple as enjoy a live music show for a few hours, together.

I do have to mention, that while it was a "full circle moment", I have arrived at this point of the circle with a large change. I don't really notice my fusion much, unless I'm having a sore day, or I forget that I can't actually reach that far behind me before it's too late....but I have to say I did notice it there at the show. Not because of any pain or discomfort, but because I don't move the same way I did the prior 28 years of my life. I have loved music ever since I was a little girl, and grew up doing ballet and playing musical instruments, and singing in bands. I don't think I've ever noticed how much music encourages me to sway back and forth or dance. When that music plays loud and fast over the large speakers, my body seems to have a natural impulse to dance! And I do still dance...it's just not how I used to. I have been relegated to the whitest of white-people dancing...moving my arms and tapping my feet. Gone is the ability to sway my back or wiggle my hips. It is a very strange thing to feel the impulse to dance and move to a melody, only to realize you can't, and your body doesn't move that way anymore.

To be honest, it did make me a little sad. It's moments like that where I am reminded of the permanence of my situation. I know that I will never be able to move those ways again. At first I chastised myself for being sad about losing the ability to do something so "trivial" and unnecessary. But then I thought about it a little more and realized, it's okay to be sad about something you lose, no matter how small it is. I have gained so much from having had the surgery that sometimes I don't let myself admit the things that I'm sad I lost because of it. But it's OK to acknowledge those losses. To pretend that I don't miss being able to lie on my stomach at night, or getting into a car without backing up into the seat, or simply swaying gracefully to a song I love....well, it would be pretending. And pretending is great when you're a child and can create whole new worlds to play in. But when you pretend as an adult to get away from the real feelings and situations you find yourself in...well, that's denial.

Do I like having to give up those abilities? No. Do I love being able to be at the show in the first place, that I couldn't have been at because of the pain I was in before the surgery? Yes. It's a trade-off. A very positively lopsided trade-off  The benefits of the surgery have far outweighed the downsides. But as I discover these small downsides along the road of recovery, I think it's a good idea to acknowledge them, just as I acknowledge and bask in the glow of the benefits and full circle moments.

As we drove home, tired and happy, we talked about the other bands we'd like to see live. It was so nice to do so without that constant caveat of "well, we'll have to see how bad your pain is." I'm so glad he's been here with me to see me come full circle and help me through the ups and downs, sorrows and joys. I'm so glad we can look forward to a life of music and white-people-dancing, together.
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"Grief can take care if itself, but to get the full value of a joy you must have somebody to divide it with."  Mark Twain