What if...........

During this time, I successfully weaned myself off Oxycontin. I hated that drug. I know it was my best friend for a while, but anyone who knows me, KNOWS that I hate drugs. I prefer not to take them - heck, I don't even get Novocaine at the dentist unless the dentist says, "Valerie, trust me, you NEED the Novocaine!". If I don't need it, I don't want it!! And I did not want Oxycontin anymore. However, you can't just stop taking it, you must wean yourself off of it or you will put yourself in a situation of having to endure withdrawals!! Yuck! Gross! No way!! I spoke with so many people as to HOW to get off of Oxy, I put all of the information together and determined that the slower you go, the better the outcome. So, although I am not a person who possess' much patience (OK, I possess NONE!) I was also too scared to go through any type of withdrawal. That is too "drug addict" for me. The whole concept frightened me more that the hatred of  the drug. So I took it slow and I started basically the day I came home from Rehab and it took approximately 8 weeks. I am happy to say I'm off of it, BUT....I do have pain. But tolerable pain. Post-surgical pain - so it's okay. Now as to the other medication I take....the name of the drug is Neurontin. I take it for nerve pain - the neuropathy in my right leg and for sciatica, actually any nerve pain. Neurontin was originally designed for epileptic seizures, but after a while it was decided that it wasn't as great as they thought it was going to be for that, however they found that it did seem to work phenomenally well for nerve pain. All I knew was that it was either Oxycontin or Neurontin that had stolen my memory for a long time. At first, I assumed it was the Oxycontin. I suppose because Oxycontin has such a bad name and everyone knows by now that it is quite addicting. Not only was I was on it for 4 months, I was on a relatively high dose, so I wanted off. However, during the weaning process, I was also suffering from SEVERE leg, ankle and foot edema. It was more prominent in my right leg, my "bad" leg, but I definitely had it in both. I sought advice from nurses, Dr. Glazer, other doc's, other revision patients and I did everything that I was told to do. I raised my legs (which I couldn't really do or I found it painful in my lower back, but I would try!) above my heart, I started drinking alot of water, I started moving around and walking more and I wore compression stockings. NOTHING was helping. I was growing concerned. I went online to check out Neurontin and opened up Pandora's Box - I found all kinds of information that many, many, many people reported significant memory loss AND severe edema!! Hellloooo......are you joking me, right? So I asked my sister-in-law (the nurse) who checked with a doc she knows and called me and told me that the doc didn't feel that the Neurontin was a bad drug nor the cause of my edema but instead suggested that I get some routine blood work to rule out something called Third-stage Phasing (don't even bother to ask, the blood work came out perfectly normal! Even my iron count was great!) and to stop taking stool softeners!! As it turns out, stool softeners are actually high in sodium!! Duh! So I stopped, now.....not to be gross, but I was a little concerned about doing this but not only did the edema decrease dramatically but suddenly I was as "regular" as can be!!!! And I was still on the Oxy then which should have really been a problem, but it wasn't. So much for stool softeners! In the meantime, although this doc nor my rheumatolgist nor my pharmacist felt there are any major issues with Neurontin, I was still plagued by what I had read online from other patients regarding the memory loss that I have had. I know that all of you are sick and tired of hearing about my memory loss, but it bothers me. It scares me. I don't understand how someone can lose such a chunk of time. Please try to put yourself in my shoes for a minute - imagine if all of a sudden right now, you didn't remember any of my previous blogs? Nothing, not one piece. Imagine that all of a sudden you are reading this and saying to yourself, "who is this that wrote this, why is she writing to me and why don't I remember why I'm reading this?" - wouldn't YOU be frightened?? I think if you were honest, you'd admit you'd be scared shitless. That is sort of how I feel about TEN weeks of my life! I know that there are no memories there that I need nor really should want to remember, but my question is really - HOW COME I have no memory??

I did ask Dr. Glazer about it, he didn't seem all that phased and we actually joked about how it was probably good that I have little memory of most of it. He always describes spinal revision surgery as the "most grueling surgery known to mankind", hands down and that spinal revision is not a surgery for "wimps" - so although I have accepted that I have little memory or in some cases, no memory - I just want to know why? That's all - why? At my appointment last week, I had the usual x-rays and everything looked good. I will post a pic of it in the sidelines soon. As was the case at the last appointment, every screw, every bolt, every rod is in place. He said, "it looks good". My visit with him was close to an hour and he answered many more questioned, reviewed the exact process of the surgeries and what he did exactly and he also commented that, as scary as it sounds, he was just happy that my legs actually function and that I am walking?!? He said that there were so moments there that I caused the whole OR team a few scares and that he had so much work to do that it was.....well, daunting. I hadn't realized until I was sitting there with him, watching his eye's and facial expression, that he is just very relieved to seem me in the condition that I am in. Clearly, it could have easily gone in the other direction.

We discussed the neuropathy issues in my right leg and he is sending me to a pain management physician who he feels may be able to help me better with a different medication than Neurontin, as it clearly isn't doing what he had expected it to do. Unfortunately, the sciatica pain has increased as I am weaning off the Neurontin - which isn't so wonderful. I have re-started my walking regime and just last night walked almost a mile and a half. Not bad, huh? But........it took me almost 40 minutes!!!!!!! OMG!! I used to walk 4 MPH! Guess I won't soon be entering any marathon's! I had to walk very slow or the sciatica would start bolting through my leg, so I just took it slow. Hey, what are you going to do?? I was walking at a favorite walking spot, the Avondale Preserve. I LOVE walking in there and I am no nature buff!! (Although I wish I were! It sounds so appealing to me to be "one with nature" but the truth is that I just HATE bugs too much and I HATE to sweat! Double YUCK-YUCK!!) But there is something peaceful there as you pass by the horses and donkeys and some other animal that I have no idea what it is, and the Adirondack chairs perched in people's lawns AND there is an absolutely beautiful home in there that I have adored for years. People walk by you and smile and say hello. There are roller-bladers, families with small children just learning to ride a bike (aw..doesn't that bring back cherished memories of your own children?) and people walking their dogs. Thankfully there are now signs asking people to keep their dogs on leashes - I have had too many experience in the past when I used to roller blade and run (years ago - obviously!) and I would have my iPod on and not hear some dog come running up behind me and scare me half to death. Once, one jumped on me from behind, causing me to fall! I was pissed - the owners were quite a distance behind me and I waited for them and told them "hey, I've got a bad back and I out here busting my butt trying to stay healthy and your dog jumped on me and caused me to fall!" and they got mad at me!!! Jerks!! People - keep your dogs leashed, it is not fair to others out walking, minding their own business! And even if you have them on a leash, don't give them so much line that they come into our space anyway! When someone has an iPod in their ears in a supposedly safe area marked for walkers, don't let your animals dominate! You wouldn't allow your kids to run up and jump all over people, so why do some people think it is okay to let their dogs do it?? Personal pet peeve of mine, can you tell? Anyway, the walk was lovely even though the sciatica is concerning to me and no, I haven't called the Pain doc yet (you must know by now that I am a procrastinator!!) When I did get home, I did do the unthinkable though. I took a Percocet. Yes, I took drugs!! Then I showered, took my PM Neurontin and called it a night!! At last, I felt like I had truly accomplished something.

The other information I received from Dr. Glazer last Thursday is that I can also start "weaning" off the brace!!! YEAH! It is like 6 or 7 weeks earlier than I was expecting to stop and he explained that he feels that because everything looks really good, that it is time. The big concern is that the longer that one wears a brace, the longer the core of our body atrophies and we have all heard enough about how our "core" helps strengthen our bodies and our walking gait. However, he said I can't just stop using it because so many muscles etc. have become used to be held in and up and everything and that if I just stopped wearing it all of a sudden, I would end up in a lot of pain. So his advice was to start decreasing the hours in which I wear it by an hour for a day or two, and then increase that time to an hour and half etc. I asked if I had to wear it while walking and he said I didn't - that really pleased me because I can't explain to you how hot it is while wearing this contraption! So, I've been weaning ever so slightly and actually rode in the car today without it!!! Ben took me to see my Dad and then we went to the grocery store. I haven't been to the grocery store four months!!! Imagine that?? That is a long time, isn't it? Of course, he did all of the work, I just pointed and told him what I wanted!! Ha! Ha! Poor kid, he is my personal assistant for the summer! I was exhausted when we finally came home. I basically put most of the stuff away with some assistance from him, took my afternoon meds and decided to lay down when my housekeepers arrived. I soon fell fast asleep. I didn't sleep too long, maybe about a half hour or so, but it was a deep sleep. I think the thing about this experience has been the sheer exhaustion that comes with the simplest of tasks. I had been forewarned bymany people who have walked this path before me how I would be depleted of all energy, but unless you actually experience it, you couldn't possibly understand. I wonder myself how my day's pass by, but I can tell you that they fly by because it doesn't take much for me to have a very full day - doing not much! I am in awe of what I was able to do in a day, pre-revision and in all of that pain! How did I do it? Now, for example, just sitting in a car, visiting with my father for a few minutes, walking through the grocery store is exhausting, simply exhausting. I ended up laying down and resting for a couple of hours in all and then got up and did some mindless tasks, made myself some dinner because I was home alone tonight (well, ok, I just microwaved a frozen Amy's Organic Enchilada dinner! Actually that is a lie, I had Ben do it for me before he went out!). I am sitting here at almost 9PM on July 21 typing this, I can't be more up to date than I am now. So here we are. I will be getting ready for bed now, and I will lie down and as I dose off, inevitably my mind will be filled with...........what - if this, what - if that. What if, what if, what if?