Pain, dehydration, pseudo-gout and NO memory!

All I really remember of the next FIVE weeks is PAIN. Within days of coming home, I received paperwork from Dr. Glazer's office stating that my next surgery was scheduled for April 26th! I was a tad upset, I mean he had said about two weeks, not five!!! I couldn't believe that I had to wait that long. Didn't anyone understand??? I needed to get this over with? Of course, I had no choice but to accept this, but I was angry. After speaking at length about this now with Dr. Glazer, I understand that it was in my best interest. He was VERY worried about me and being cautious. He needed to make sure that I regained some strength before he brought me back in, because he quietly speculated that more trouble lay ahead. He also needed time to think about his next steps, organize a "new team" and lay out a course of action. Of course, he did not share this with me at the time.

This will be a difficult post to write, because I have VERY little memory of these weeks, except pain. Literally. I will be talking about a not so lovely topic though! Constipation!! Ha! Ha! Well, it really wasn't funny at the time. As I am sure all of you are aware, narcotic's are notorious for being unbelievably constipating. Well, that is how I came home.

My memory "blips" of this time will probably go back and forth with time, because I had no sense of time and it all seemed chaotic. The only thing I had going for me was that I had arranged 24/7 care for 6 weeks, believing that I would be all set at that time, with the 2-stage surgeries planned for March 15 & 16 completed and I would be well on my way to recovery and everything would be behind me. The reason why that was in my favor was because as it turned out, I absolutely needed the help when "the" plan went awry! Seeing I went home on a Saturday worked out well, because naturally my family was here to help me. The following week was covered by my sister Ursula, who had taken a week's vacation to be with me. I never had to even ask Ursula, she just did it. She TOLD me she was taking the time and I so appreciated it. In fact, you will see as the post's continue, how indebted I am to her for all that she has done for me and continues to do. What would any of us do without family? Unfortunately, all I remember vividly is two things: pain and severe constipation. The surgical pain was naturally horrific, but expected. However, the terrible and almost unbearable sciatica pain that I experienced was totally UNexpected. It was constant, yet mild, UNLESS I had been up and was then getting back into bed. OMG - It was then that the nerves would raise hell in my left buttock and Ursula would use all her might and massage/rub/pound it until it subsided. The whole process would reduce me to tears each time.

Ben states his biggest recollection of my time at home during those five weeks is just my unrelentless moaning. He says it never stopped, even while I slept. My sister-in-law Laryl came and gave me pointers in regards to the constipation. I was on stool softeners, Benefiber, Metamucil, suppositories, laxatives and Milk of Magnesia with prune juice and NOTHING was working!! NOTHING! Until finally one night, when it all decided to work........ at once!!! Yikes!! And I started having a tendency to pass out! I do remember my friend and neighbor Trish being here and I had horrible diarrhea and I passed out in her arms and she caught me. She is a schoolteacher and former lifeguard, so she is well-trained with various medical crisis'. Thank God! Well, when everything we had used to help me decided to work all at the same time, I had a couple of days of basically just sitting on the commode (that was placed right next to my bed, because it got to the point that there was no way I could make it to the bathroom, so Ursula went and bought me a commode). During this period, and for a few days after, I became depleted of ALL energy, hence why I started passing out for brief moments. Between what I had been through, the sadness that enveloped me because of what lay ahead, the disappointment of how my "plan" had gone wrong, the relentless pain, being completely drugged AND the depletion of my system, I apparently ended up so seriously dehydrated that Erica made the decision that I needed to get to the ER. So I had come home on Saturday, and here it was just 2 days later (Monday) and off to a hospital I go again! Erica tells me that I was paler than pale, nothing was actually staying in me, I was running a high temp and I kept passing out. I don't remember the decision being made or the ride there, although I remember my Aunt Mary getting a wheelchair when we arrived, as I was so weak I could barely walk. I vaguely recall being at the ER, and them hooking me up to an IV for fluids, but that is all I remember.

Then, as my rheumotologist had feared might happen at some point during my ordeal, two later (Wednesday), my right knee had begun throbbing since the day before and as drugged and "out of it" as I was, I KNEW that I was in the throws of a pseudo-gout attack OR perhaps I even had a blood clot?? Once again, I was put in the car and off we headed to the ER again. After an ultrasound came back negative for a blood clot, blood work was considered normal, and after my sister Ursula made a call to Dr. Silversmith for me (rheumotologist), it was determined that what I was experiencing was most certainly a pseudo-gout attack in my right knee. Dr. Silversmith was certain this would happen to me as the risk of a pseudo-gout attack rises dramatically with dehydration, hence why she called and spoke with Dr. Glazer before the surgeries and the decision was made for me to stay on the medication she prescribes me, even though it is normally not acceptable. So with her AND Dr. Glazer's recommendation, I stayed on the med throughtout the whole ordeal. But she was right, in fact, she nailed that concern on the head very early on, even though I ended up with the attack anyway! Then again, I guess the question would be, how many attacks would I have possibly experienced IF I hadn't stayed on the medicine all of the time? One thing I do remember is the ER physician, Dr. Conlin suggesting that I have a steroid injection. Having had several steroid injections in the past anyway, I was completely in favor (anything to relieve the pain!), and when he told me who the orthopedic surgeon on call was, I also remember insisting that it would not be given by him!! If you have been reading my blog from the beginning you will know that there is a certain doctor in town that I am not that fond of, but Dr. Conlin did state that this physician's PA was willing to come and give the injection instead. Because I know this man somewhat, I agreed. He showed up, gave the injection and I soon returned home in better shape. Or so I am told. I don't really remember.

My sister Michele flew in the very next day (Thursday) with my niece Molly. Erica states that I was "crazy"  during this time and really mean. I have only two memories of Michele's visit. On Friday, she, Ursula and I embarked on a trip to Boston for a post-op visit. I don't know what I would have done without the two of them. Michele was vital in helping me be as comfortable as possible in the car, and when we arrived she stormed right back to the nurses area (like she worked there!) behind the waiting area and insisted that I could not wait and got me right in and on a bed!!! That's Michele, she is just like my mother! She marched right in, took charge and BOOM! That day I saw Jeff, Dr. Glazer's PA, and it was Michele that insisted my pain med's be increased. Due to the fact that she is a nurse, I think she was able to present herself in a manner that none of us could. I recall the ride home being awful and just painful and her unbuckling herself to be as close as possible to me, as I moaned and groaned in pain. She has some lower back and shoulder issues herself and no doubt, this was not very comfortable of a ride for her either. But regardless, once again, I am indebted to my sister Michele as well. I knew I was loved and perhaps her being a nurse like Laryl is, I found great comfort in their being "in charge". That evening, because I was so weak, they wouldn't even permit me to even get out of bed myself and simply get on the commode. No one trusted me because I was so weak, but because I felt bad that Michele was "on duty" after our long excursion to Boston that day, I just hated waking her. So I decided to just get on the commode myself. Seriously, it was literally right next to the bed! All I had to do was sit up, stand up, pivot, turn and sit on the commode. How dangerous could that be, right? Well, I don't know what happened next. Did I pass out? Did I collapse because I had no strength? All I know is that I simply fell, banging my head against the door. Michele, in true Michele fashion, came in and started screaming at me! "What the f*** are you doing? You were supposed to f****** call me to help you? What are you doing?? How stupid can you be??". I really do know that she just loves me and that I scared her, but at that time, she just pissed me off. Beside the fact, that I was petrified and in fear of what harm I may have caused myself. I was scared too, but even more so I was so mad at her for what I perceived as her being mean to me! Funny thing is, I probably would have reacted the same exact way if the situation were reversed!!! We are very much alike in some ways!! I would have been furious with her. I don't even think I spoke with her the rest of her time here!!!! I was mad at her for being - what I perceived at the time - as being cruel to me. She woke the whole house up I think! Obviously she loves me and I apparently scared the dickens out of her. Not wanting to end up back in the ER for a 3rd time that week, I didn't want her to know that I thought I had passed out again, so when she asked what happened, I simply told her that I tripped on the leg of the commode! She proceeded to make a midnight call to Dr. Glazer. Dr. Glazer being Dr. Glazer responded, "Beats me if she is okay, you're there, I'm here. Is she in pain? If she is in pain, get her to an ER. If not, she's probably okay!". This angered Michele, but you have to know Dr. Glazer. He truly isn't mean, he is just dry and to the point. The other memory I have is sitting with Molly and we had a "grown-up" talk and she spoke to me of her desire to become a nurse. It was sweet, and I actually remember the conversation well. I am told they left on Sunday morning. Easter Day. My Aunt Mary recently commented about Easter and I looked at her and thought, "Oh yeah, I guess was home for Easter. Easter?!?". Hmmm....then she said something about us having Prime Rib, Au Gratin potatoes and Asparagus. Really? I cautiously asked, "Did I eat dinner too?", she replied, "Yes, in fact you ASKED for the asparagus AND the Au Gratin potatoes!". Really? I have absolutely NO memory of that request OR sitting here with my family, Ursula and Aunt Mary, and dining on this meal. No memory. Whatsoever. It's so frightening.

The following week on April 5, my "scoli-friend" Dianne (from Atlanta, GA) came up to be with me for a week. I DO remember a bit about this time, but still not a lot. For which I feel terrible. Here is this person who extended her time to be with me and I don't remember very much of her being here. I remember her arriving, I remember our talks at night because she insisted on staying right in the room with me and sleeping on a small, leather loveseat in my room. She refused to sleep in Erica's bed, siting that she had come to be with and help me. As she and all of our scoli-friends always say, NO ONE can possibly understand what we have gone through since our adolescent years, but then to have to endure these revision surgeries that are so unique and unusual that unless you've been through it, no matter how hard you may try, the average "normal"  unfused person could not possibly ever understand. I have now learned that she is 100% correct! None of you can. You can support me and love me and help me, but you can't possibly understand what it is like to live like this. However, as I often remind myself, it could always be worse so I move on. Finally, one night I remember Erica and I giving Dianne no choice and we insisted she get a night's sleep in an actual bed. I also remember her cooking dinner one night. I don't remember WHAT it was, but I remember enjoying it! Ha! Ha! The story of how I "met" Dianne is interesting. Do you remember me telling you about the Yahoo! group that I joined soon after diagnosing myself with Flatback?? Well, Dianne is a member of the group and we had come to "know" each other, along with many others, online. So for several years, I "knew" Dianne, yet wouldn't know it if I passed her on the street. The founder of the group, Cam (from Nantucket) organized a Retreat in Boston in October of 2008. I went, with Erica and met Cam and several others from the group at Cheers at Fanuiel Hall. Dianne was there but was sitting at the opposite end as me with her husband. Although we said hello briefly, I didn't have an opportunity to spend any time with her. Then soon after, Cam organized a Retreat in NC in the spring of 2009 and I decided to attend. I flew out of Providence, met up with Cam and another gal (Martha from Chicago) in Charlotte and we continued on to a small airport in New Bern, NC where we met up with Dianne and rented a car and drove to the destination point of the Retreat. We went for five days and I just fell in love with Dianne. We just clicked and had such a good time together. We have stayed in touch ever since. When I was preparing for my surgeries, she told me that she was coming up to help me for a week! I was speechless! I tried to resist, I mean I didn't know her all that well, but she would take no for an answer. She has been such a big support and although I unfortunately don't remember all of her stay with me, I am grateful for what I do remember and even more grateful that she came to help me.

The third week I was home, I had sporadic and different help each day. My neighbor Dee, my Aunt Mary, and a friend from my jewelry store days, Glenda all pitched in. I do know that I was never, ever alone during this 5 week period. However, I have no specific memories of this week either. So scary.

The following week, Ben was on school vacation so he stayed home to care for me. Once again, I don't have one single memory of this time.

The last week before returning to Beth Israel for what I thought would be the last and final surgery, Ursula had taken ANOTHER week's vacation to care for me. As she had done previously, she just moved in and she cared for me 24/7 once again. I literally have absolutely NO memory of this week either.

I do remember my friend Sherry coming each Tuesday and Friday in the late afternoons, early evening. She kept me company, eased my pain, made me my dinner and fed me sometimes. I probably remember this because she has never missed a Friday since! Except for subsequent stays in the hospital, rehab or last Friday night due to Ben's HS graduation, she has not missed a Friday night visit. These aren't just "visits" but rather they last for hours and hours and I love our time together! We have been friends for 30 years, but we have now bonded so deeply that I love her like a sister. She has stood by me through my miscarriage, my mothers death, Ben's diagnosis and my spine saga. She is just always there. During the five week period, she also organzied a "cleaning frenzy" at my house, calling many friends and family in to help! Unbelievable. She has been a steady source of comfort. I am indebted to her, along with so many others. I am blessed with some very good friends and family.

So as you can see - I don't remember much at all. Just small tidbits. I worry about why. Everyone tells me it was because I was so heavily drugged on Oxycontin, Valium, AND in an awful lot of pain. I can only assume they are correct, but it still bothers me that I have lost such a big chunk of time in my life. Erica tells me often that I was just mean, mean, mean and nasty during these five weeks. She was frightened by it and Michele and my Aunt Mary had to keep explaining to her that it was the drugs. Ben states he wouldn't necessarily describe me as mean, but more "easily agitated" and "highly emotional". (I DO remember ALOT of crying!! I still do that and I did find out that really is a side effect of Oxycontin, so I guess I have an excuse!?!) But that's MY Ben - the diplomat. He chooses words more carefully than Erica!!! Ha! Ha! Erica is more like me, just speak the truth and blurt it out. Ben, is more like his father, and thinks about his words before he speaks and prefers to say I was just "easily agitated". Too cute. Or maybe it truly is just each their perception. Who knows? My dear friend Cindy commented that she also felt I was "easily agitated" too, but she knew it was the drugs and the pain.  She and I have been friends, almost as long as Sherry and I, and if I had been mean to her, she would have just let it roll of her shoulders. She is that kind of girl!! If anything, she probably would have told me to just knock it off!! Ha! Ha! Sherry says, "You weren't would I would classify as mean AT ALL. You were simply in awful pain and that is exactly how you acted". I guess it is all how you look at it. All I know is.......I simply don't remember. I don't remember certain people visiting, I don't remember most conversations, I just don't remember. So IF you are reading this and you feel that I was mean to you, I apologize, because chances are very high..........I just don't remember and I didn't mean it. I'm sorry.

I don't have any recall of heading back to Boston on April 26 for surgery #2 either. I don't remember the drive and I don't remember arriving at the hospital. I often wonder if memories will flood me at some point in the future or they are gone forever? I have had several people question why it bothers me. I can't explain it, it just does. My family and friends often remind me of things and I just don't remember. They explain that I, more often than not, seemed lucid and could carry on a conversation and yet I just don't remember these supposed conversations. I don't remember doing certain things either. It is discombobulating to have no memory of five whole weeks and unless you've ever experienced it, I suppose you wouldn't think it would matter. Someone else questioned me that perhaps it is a blessing, perhaps it is allowing me to block out more pain than I already recall? Whatever the reason, it is frightening. I will always be bothered by it. My apologies again to all for any "meanness" I may have inadvertantly and unknowingly presented. It certainly was not intended.