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?
~~My first hand account of the journey that I have endured with my scoliatic spine since I was 12 years old. This is an adventure that I've only recently begun to acknowledge that I will be traveling until the day I die.~~
Wednesday, July 21, 2010
As time goes on.......
Between my June 3rd appointment and my next one on July 15th, many changes occurred. When I was released from the Apple Rehab facility, I was discharged with orders to receive home health care. It was decided that I would use the VNS of South County and that I would have the care of an RN, a CNA and a PT. The PT part I was a little confused with because generally PT isn't started until - at minimum - the 6 month mark. But, hey - what do I know??
I received the call from VNS and a nurse was to come out the next day. The CNA's started the following week to assist in my showering, changing my sheets, starting laundry, preparing lunch if I needed etc. The PT arrived the following week. The nursing care only lasted two weeks as they soon realized that I really didn't need any nursing care. My incision was almost healed and my health in general was very good. Phew - done with one. The CNA's I needed longer - I could not shower on my own. In fact, I couldn't even shower in my own bathroom, but had to use the kid's bathroom. Our tub has a jacuzzi bottom and it was too high for me to lift my legs up into. The kids bathroom has a standard tub which made it much easier. By the time I was able to progress to my own bathroom several weeks later, I realized that I could basically do it all myself - so I fired the CNA's! No, I'm only joking, but I did let the PT know that I felt very capable on my own, so we decided together that I was more than able and to tell yo the truth - I was sick and tired of being naked in front of strangers!!!! Ha! Ha! For God's sake, I've been naked in front of more people than the average person. Well, I suppose strippers feel that way too!!! Ha! Ha! But more than that, I was sick and tired of having to be at the mercy of someone else's schedule, you know? Now keep in mind that I had five or six different CNA's in just a few weeks time! One day they would want to be here at 8:30 AM, another time they couldn't get here til 3PM. Ugh. I was just done. Besides, it gave me back a little independence and I think the the fact that I recognized and wanted to reclaim my privacy and control was a good thing.
During this time, I also realized that the PT assigned to me really didn't have a clue about this type of surgery, recovery or what could or couldn't hurt me. It dawned on me several times that I wasn't even sure I should be having PT. I'll blame it on drugs - AGAIN! I would think of things of concern but hey would leave my brain as soon as they entered. One day I received a call from an acquaintance of mine, who is a PT with the same organization. She was filling in for my regular PT. I instantly loved her approach. Now, as it turns out, she actually is very good friends with my sister-in-law, but I don't know her well at all. However, my sister-in-law had kept her abreast of the surgical "journey" through the emails that Erica was regularly sending out. She also has some spinal issues herself and I found her clearly educated on the spine and she continually expressed correct body mechanics to me. After the next couple of sessions with the previous PT, I knew I needed to have a change. I expressed this to the PT I wanted and she put in the request for me but as it turned out, their territories were being changed or more strongly implemented as I really did fall under this new PT's territory anyway. She had a completely different approach, much more gentle whereby she incorporated gentle manipulation and stretching, including edema massage. She gave me isometric exercises to strengthen my core. She did comment to me that the previous PT had commented that I was "fearful and scared" to try anything new! I knew that the change had been right. Now I am NOT saying that the first PT was not good, she may in fact be a great PT, but unfortunately she was most likely well-versed in dealing with older people with different limitations than a 48 year old woman just having undergone 3 major, MAJOR spine surgeries of a nature that she was not familiar with - at all. She did not understand or comprehend exactly what I had been through or what the expectations are. For a couple of more weeks, I had PT with my new gal. That is until I saw Dr. Glazer on July 15. Oops.................guess I wasn't supposed to be having PT after all!! Yikes! Here we go again.............what if??
I received the call from VNS and a nurse was to come out the next day. The CNA's started the following week to assist in my showering, changing my sheets, starting laundry, preparing lunch if I needed etc. The PT arrived the following week. The nursing care only lasted two weeks as they soon realized that I really didn't need any nursing care. My incision was almost healed and my health in general was very good. Phew - done with one. The CNA's I needed longer - I could not shower on my own. In fact, I couldn't even shower in my own bathroom, but had to use the kid's bathroom. Our tub has a jacuzzi bottom and it was too high for me to lift my legs up into. The kids bathroom has a standard tub which made it much easier. By the time I was able to progress to my own bathroom several weeks later, I realized that I could basically do it all myself - so I fired the CNA's! No, I'm only joking, but I did let the PT know that I felt very capable on my own, so we decided together that I was more than able and to tell yo the truth - I was sick and tired of being naked in front of strangers!!!! Ha! Ha! For God's sake, I've been naked in front of more people than the average person. Well, I suppose strippers feel that way too!!! Ha! Ha! But more than that, I was sick and tired of having to be at the mercy of someone else's schedule, you know? Now keep in mind that I had five or six different CNA's in just a few weeks time! One day they would want to be here at 8:30 AM, another time they couldn't get here til 3PM. Ugh. I was just done. Besides, it gave me back a little independence and I think the the fact that I recognized and wanted to reclaim my privacy and control was a good thing.
During this time, I also realized that the PT assigned to me really didn't have a clue about this type of surgery, recovery or what could or couldn't hurt me. It dawned on me several times that I wasn't even sure I should be having PT. I'll blame it on drugs - AGAIN! I would think of things of concern but hey would leave my brain as soon as they entered. One day I received a call from an acquaintance of mine, who is a PT with the same organization. She was filling in for my regular PT. I instantly loved her approach. Now, as it turns out, she actually is very good friends with my sister-in-law, but I don't know her well at all. However, my sister-in-law had kept her abreast of the surgical "journey" through the emails that Erica was regularly sending out. She also has some spinal issues herself and I found her clearly educated on the spine and she continually expressed correct body mechanics to me. After the next couple of sessions with the previous PT, I knew I needed to have a change. I expressed this to the PT I wanted and she put in the request for me but as it turned out, their territories were being changed or more strongly implemented as I really did fall under this new PT's territory anyway. She had a completely different approach, much more gentle whereby she incorporated gentle manipulation and stretching, including edema massage. She gave me isometric exercises to strengthen my core. She did comment to me that the previous PT had commented that I was "fearful and scared" to try anything new! I knew that the change had been right. Now I am NOT saying that the first PT was not good, she may in fact be a great PT, but unfortunately she was most likely well-versed in dealing with older people with different limitations than a 48 year old woman just having undergone 3 major, MAJOR spine surgeries of a nature that she was not familiar with - at all. She did not understand or comprehend exactly what I had been through or what the expectations are. For a couple of more weeks, I had PT with my new gal. That is until I saw Dr. Glazer on July 15. Oops.................guess I wasn't supposed to be having PT after all!! Yikes! Here we go again.............what if??
Arriving home.........
Walking into my house was a joyful moment. For all of you that know me well, I am a homebody, and there is no where I'd rather be than be at home. The car ride home was not only uncomfortable, but I was filled with excitement to just be here. Bob and I had a little lunch and off came the brace for me to lay down. Ben came home from school and then Erica a little while later. My sister Ursula came by, the phone was ringing off the wall and I was tired. Although I was apprehensive to be without any nursing care for the first time in a long time, and almost overwhelmed, I fell asleep and slept the whole night through. Bliss.
I came home from the Rehab using a walker and I had borrowed an adjustable bed from my friend Glenda and we made our study into "Mom's room"! It's peaceful and quiet and allows for good sleep. My dear friend Sherry organized yet another cleaning frenzy, calling in all of my family and friends, including Diane and Jill, Robin, Glenda, Dee, and Ursula did practically nothing but clean for me. I've never had such a clean bathroom. Plus, she was here every day. Sherry came the Friday night when I came home and basically never missed a Friday night until Ben's graduation!! Then resumed again. She called and checked on me. I have a couple of friends who were my constant sources of healing. And my kids? Oh dear, they give me reason to live.
I went for my first post-op visit on June 3 @ 11 AM. I had "downgraded" from the walker to a cane by now. I didn't like the feel of the cane, so I often would experiement with using neither the walker or the cane. Unfortunately, I did still had to rely on the the walker if I had to go to the bathroom in the middle of the night because of the severe leg weakness. My sister Ursula brought me. First, we met with a sweet young gal by the name of Nikki who is the sales rep for the Bone Stimulator that Dr. Glazer requested that I use. I already knew how to use it as I used it two years ago when I had my cervical fusion. The sweet part of this story is that I have been having a phone "friendship" with this young woman regarding my old stimulator for over a year now. She was fully aware that I was going ahead with my spinal revision in March. Sometime between surgery #2 and surgery #3, Nikki made an unannounced visit and I was so touched by that. She made a point of telling me that she doesn't make it a practice to visit her clients patients, but she felt like a friend!! Isn't that sweet? The bad part of the story?? I only remember that she came, I couldn't tell ANY of the conversation. Of course, I just don't remember! Big shock, huh?
So after talking with Nikki, I had arranged to me with the "brace man"!!! Ha! Ha! The brace was no longer fitting me correctly as I had lost weight through the surgeries and it was now too big. So he re-adjusted it and cut off the extra Velcro from the tabs and also taught me how to put it on myself - because up until this pint, I was reliant on others to do so. He was a nice guy - although I can't remember his name. His partner was Bob, who had originally fitted me, but I just can't remember this guy's name. Oh well.
Then on to Jeff, Dr. Glazer's PA. I threw out all of my questions and he answered a few, but then as always, replied to many with, "We better wait and ask the Big Guy!". Then Dr. Glazer came in and he seemed so happy to see his remarkable results. The visit went well and everything looked good. He said Icould ditch the walker and the cane and try it on my own. I asked, "How often and much should I be walking?" and in typical fashion, Dr. Glazer replied, "When your tired, STOP! If it hurts, STOP!". Okay, then! Hallelujah! I was now about one month post-op from my third surgery. I'd be lying if I didn't tell you that I was still scared. Scared of the "what if's". What if the fusion doesn't take? What if a screw moves? What if one of the new rod's shifts? What if the neuropathy in my right lower extremity doesn't go away? What if my sciatica worsens? What if this doesn't end up a success story? What if, what if, what if?? I can drive myself crazy with what if!!!!
I came home from the Rehab using a walker and I had borrowed an adjustable bed from my friend Glenda and we made our study into "Mom's room"! It's peaceful and quiet and allows for good sleep. My dear friend Sherry organized yet another cleaning frenzy, calling in all of my family and friends, including Diane and Jill, Robin, Glenda, Dee, and Ursula did practically nothing but clean for me. I've never had such a clean bathroom. Plus, she was here every day. Sherry came the Friday night when I came home and basically never missed a Friday night until Ben's graduation!! Then resumed again. She called and checked on me. I have a couple of friends who were my constant sources of healing. And my kids? Oh dear, they give me reason to live.
I went for my first post-op visit on June 3 @ 11 AM. I had "downgraded" from the walker to a cane by now. I didn't like the feel of the cane, so I often would experiement with using neither the walker or the cane. Unfortunately, I did still had to rely on the the walker if I had to go to the bathroom in the middle of the night because of the severe leg weakness. My sister Ursula brought me. First, we met with a sweet young gal by the name of Nikki who is the sales rep for the Bone Stimulator that Dr. Glazer requested that I use. I already knew how to use it as I used it two years ago when I had my cervical fusion. The sweet part of this story is that I have been having a phone "friendship" with this young woman regarding my old stimulator for over a year now. She was fully aware that I was going ahead with my spinal revision in March. Sometime between surgery #2 and surgery #3, Nikki made an unannounced visit and I was so touched by that. She made a point of telling me that she doesn't make it a practice to visit her clients patients, but she felt like a friend!! Isn't that sweet? The bad part of the story?? I only remember that she came, I couldn't tell ANY of the conversation. Of course, I just don't remember! Big shock, huh?
So after talking with Nikki, I had arranged to me with the "brace man"!!! Ha! Ha! The brace was no longer fitting me correctly as I had lost weight through the surgeries and it was now too big. So he re-adjusted it and cut off the extra Velcro from the tabs and also taught me how to put it on myself - because up until this pint, I was reliant on others to do so. He was a nice guy - although I can't remember his name. His partner was Bob, who had originally fitted me, but I just can't remember this guy's name. Oh well.
Then on to Jeff, Dr. Glazer's PA. I threw out all of my questions and he answered a few, but then as always, replied to many with, "We better wait and ask the Big Guy!". Then Dr. Glazer came in and he seemed so happy to see his remarkable results. The visit went well and everything looked good. He said Icould ditch the walker and the cane and try it on my own. I asked, "How often and much should I be walking?" and in typical fashion, Dr. Glazer replied, "When your tired, STOP! If it hurts, STOP!". Okay, then! Hallelujah! I was now about one month post-op from my third surgery. I'd be lying if I didn't tell you that I was still scared. Scared of the "what if's". What if the fusion doesn't take? What if a screw moves? What if one of the new rod's shifts? What if the neuropathy in my right lower extremity doesn't go away? What if my sciatica worsens? What if this doesn't end up a success story? What if, what if, what if?? I can drive myself crazy with what if!!!!
Tuesday, July 20, 2010
Arriving at Apple Rehab.............
May 13, 2010
I arrived at Apple Rehab in Mystic, CT at around around 4 or 5ish (I think). The funny thing about this facility is that my 92 year old Aunt Sarah was there as well!! How funny is that? I didn't originally pick this site, they just happened to have an opening and the Apple Rehab in Westerly did not. The ambulance crew is wheeling me down a corridor when all of a sudden it sounded as if they whole place joined in loud clapping all at once and I saw all of the people lining the hall way and who was in the center of it all?? My Aunt Sarah!! She was soooo excited to have her niece there with her now. They wheeled me to a private room (thank God!) and I was suddenly bestowed with attention and kindness that I had not received from nurse's at BIDMC, that's for sure!!
The private room that I was in had just been renovated and because I arrived a couple of hours earlier than I was supposed to, it wasn't quite ready. Their maintenance guy, Michael, was in there rushing around trying to do ten things at once. They kept apologizing and I kept telling them it was okay. The room was spacious, with a beautiful hardwood floor (just installed) and bathroom (which actually could have used updating!) TV and wireless Internet access. When I arrived, I was still reeling with some bowel issues (due to another bout of that damn constipation and stool softeners and enemas! UGH!) but true her word, Aunt Mary went to Steak Loft restaurant and came back with the most succulent steak dinner! After all of that hospital food, I was in heaven. The only thing was, I didn't have a very big appetite. But it was delicious!!!! Plus, I think my blood was craving pure protein. I was in a lot of pain and they had told me that I was going to get just Percocet until the Oxycontin came in, but that it was ordered. They never said it wouldn't be in for almost 24 hrs., but nonetheless, they were right on time, every 4 hours, feeding me Percocet - doing everything they could to keep me comfortable.
When everyone left that night, and lights were out, I laid there and started to cry. I was scared. Like a child. It was the first time that I had been "alone" in months and I didn't like it. Fortunately, I soon fell asleep but only to have to wake up and go to the bathroom. I rang the bell and a older, male nurse came to my side. I was slightly embarrassed, but hey.....it's his job, right? But he was so gentle, so sweet and so compassionate. He came back to give me my med's and he mentioned that I wouldn't see him again as he was starting a 2 week vacation the next day. Because I was so lonely and scared, I embraced him in a conversation. I asked him where he was going and he told me Texas. That was where he was from. So I asked him "Where in Texas?" and he said, "Midland" - I kept asking him questions, and he kept answering. I was scared and in so much pain and I told him that the more he talked, the less pain I noticed. What a sweet, sweet man. He must have stayed there talking to me for 30 minutes, until I finally fell asleep. I never saw him again.
The next day was sunny and that beautiful sunlight was streaming through my window and for the first time, in a very long time, I felt hope. I prayed to God, hung onto my rosary beads (that were my mothers) and was filled with hope. That night I went to sleep, not afraid at all. I KNEW that I was really going to be okay after all.
Just a couple of quick notes about this facility, Apple Rehab - Mystic. I would recommend it to anyone who has to endure a rehabilitation. The people that work there are the kindest people that I have ever met. I wish I could remember every one's name - there was the night nurse Bob who I really liked and Linda, another night nurse. Then there was the gal, who's name was a traditional guy's name, like Sam or something. Loved her, very sweet. The other daytime male nurse, who I really liked too - but I suddenly can't recall his name. The CNA's who helped me shower were so, so sweet. Oh and let's not forget Michael, the maintenance guy, who barely missed a day without popping his head in to say hello. On the second or third day there, he was installing a new closet system in my room (along w/ a gal who's name I can't recall right now either. I referred to her as Michael's gal Friday, because she was always helping him!) when I came back from PT. I was pooped! I laid down and he asked if I wanted him to leave, I said no. Well, I guess I fell sound asleep, right alongside his saw and electric nail gun and screwdriver. He came the next day and told me that I fell asleep in about 2 minutes and that I was in a deep, deep sleep never stirring, even with all the noise!! He said I was the most "beautiful and peaceful" sleeper, "almost angelic". Goes to show he didn't really know me, huh?
PT was fine. There was a student there who was sweet. I can't believe that I can't remember their names. However, one day, at just about the two week mark, I mentioned to the lead PT that I was ready to go home!! Now! She said, "OK, I'll tell Kathy". I spoke with Kathy myself later than afternoon and we decided that I could go home the day after next. On this particular day, my Aunt was being discharged. I went and said goodbye to her and was excited about finally being able to go home myself. Yeah!! Home. I hadn't been home in almost 6 weeks. I couldn't wait.
I arrived at Apple Rehab in Mystic, CT at around around 4 or 5ish (I think). The funny thing about this facility is that my 92 year old Aunt Sarah was there as well!! How funny is that? I didn't originally pick this site, they just happened to have an opening and the Apple Rehab in Westerly did not. The ambulance crew is wheeling me down a corridor when all of a sudden it sounded as if they whole place joined in loud clapping all at once and I saw all of the people lining the hall way and who was in the center of it all?? My Aunt Sarah!! She was soooo excited to have her niece there with her now. They wheeled me to a private room (thank God!) and I was suddenly bestowed with attention and kindness that I had not received from nurse's at BIDMC, that's for sure!!
The private room that I was in had just been renovated and because I arrived a couple of hours earlier than I was supposed to, it wasn't quite ready. Their maintenance guy, Michael, was in there rushing around trying to do ten things at once. They kept apologizing and I kept telling them it was okay. The room was spacious, with a beautiful hardwood floor (just installed) and bathroom (which actually could have used updating!) TV and wireless Internet access. When I arrived, I was still reeling with some bowel issues (due to another bout of that damn constipation and stool softeners and enemas! UGH!) but true her word, Aunt Mary went to Steak Loft restaurant and came back with the most succulent steak dinner! After all of that hospital food, I was in heaven. The only thing was, I didn't have a very big appetite. But it was delicious!!!! Plus, I think my blood was craving pure protein. I was in a lot of pain and they had told me that I was going to get just Percocet until the Oxycontin came in, but that it was ordered. They never said it wouldn't be in for almost 24 hrs., but nonetheless, they were right on time, every 4 hours, feeding me Percocet - doing everything they could to keep me comfortable.
When everyone left that night, and lights were out, I laid there and started to cry. I was scared. Like a child. It was the first time that I had been "alone" in months and I didn't like it. Fortunately, I soon fell asleep but only to have to wake up and go to the bathroom. I rang the bell and a older, male nurse came to my side. I was slightly embarrassed, but hey.....it's his job, right? But he was so gentle, so sweet and so compassionate. He came back to give me my med's and he mentioned that I wouldn't see him again as he was starting a 2 week vacation the next day. Because I was so lonely and scared, I embraced him in a conversation. I asked him where he was going and he told me Texas. That was where he was from. So I asked him "Where in Texas?" and he said, "Midland" - I kept asking him questions, and he kept answering. I was scared and in so much pain and I told him that the more he talked, the less pain I noticed. What a sweet, sweet man. He must have stayed there talking to me for 30 minutes, until I finally fell asleep. I never saw him again.
The next day was sunny and that beautiful sunlight was streaming through my window and for the first time, in a very long time, I felt hope. I prayed to God, hung onto my rosary beads (that were my mothers) and was filled with hope. That night I went to sleep, not afraid at all. I KNEW that I was really going to be okay after all.
Just a couple of quick notes about this facility, Apple Rehab - Mystic. I would recommend it to anyone who has to endure a rehabilitation. The people that work there are the kindest people that I have ever met. I wish I could remember every one's name - there was the night nurse Bob who I really liked and Linda, another night nurse. Then there was the gal, who's name was a traditional guy's name, like Sam or something. Loved her, very sweet. The other daytime male nurse, who I really liked too - but I suddenly can't recall his name. The CNA's who helped me shower were so, so sweet. Oh and let's not forget Michael, the maintenance guy, who barely missed a day without popping his head in to say hello. On the second or third day there, he was installing a new closet system in my room (along w/ a gal who's name I can't recall right now either. I referred to her as Michael's gal Friday, because she was always helping him!) when I came back from PT. I was pooped! I laid down and he asked if I wanted him to leave, I said no. Well, I guess I fell sound asleep, right alongside his saw and electric nail gun and screwdriver. He came the next day and told me that I fell asleep in about 2 minutes and that I was in a deep, deep sleep never stirring, even with all the noise!! He said I was the most "beautiful and peaceful" sleeper, "almost angelic". Goes to show he didn't really know me, huh?
PT was fine. There was a student there who was sweet. I can't believe that I can't remember their names. However, one day, at just about the two week mark, I mentioned to the lead PT that I was ready to go home!! Now! She said, "OK, I'll tell Kathy". I spoke with Kathy myself later than afternoon and we decided that I could go home the day after next. On this particular day, my Aunt was being discharged. I went and said goodbye to her and was excited about finally being able to go home myself. Yeah!! Home. I hadn't been home in almost 6 weeks. I couldn't wait.
Friday, July 16, 2010
Surgery #2, #3, bad drugs and Mother's Day!
Evidently I was in ICU for three days with a breathing tube. I barely remember it. I do recall waking at times and realizing it was still there and panicked. I was able to quickly reel myself in and always repeated, "Just go back to sleep" as I attempted the rosary. Once again. Me and the rosary. I don't think I ever got past one or two Our Fathers, but I sure did attempt it many, many times! I really remember very, very little of the following 9 days until the next surgery. My mind is completely shut to the memory. The truth is that I remember nothing, except for pain when I would awake periodically. Because I can't remember, I've asked my sister Ursula to "fill in the blanks" - this is what she has said:
"You went to ICU where we saw you before they left to come back to Westerly. I went to the hotel to sleep, only to wake and call the nurse at 5 a.m. to see how you were doing. A couple of hours later I was by your bedside for 24 plus hours. Because you were intubated and couldn't talk, you spelled out words on the sheet letter by letter. It was grueling to understand what you were trying to ask. However, after many attempts I understood you wanted to know the outcome of the surgery. I remember asking you if you really wanted me to tell you and you replied yes with a nod. I delivered the news that the surgery had not been completed because Dr. Glazer was concerned for your safety, as you bled so much and the dura was practically non-existent again. It all but killed me to tell you the truth. Part of me wanted to lie to protect you but I knew I couldn't do that. You couldn't talk but your eyes started to tear up and my heart broke for you. It was one of the most difficult times in my life. You continued to spell out words on the sheet. I felt so horrible trying to understand you, sometimes with little success. One time, after quite a time and much frustration on both our parts, I figured out you were having a hot flash! I then took off the covers and fanned you. I felt so good that I could help you in some way. When they took the tube out three days later, you were so happy. You so hated that tube! A day later you were able to have some liquid lunch and dinner. The following morning for breakfast you had a whole breakfast sandwich. It was great to see you eating but I really was wondering what was going on in your head. I was fearful of that. Didn't know how you were going to cope until the next surgery.
He called after the third surgery about 4 p.m. while I was waiting in your room. I could tell by the tone of his voice that he had good news to deliver this time. He told me that he was able to complete the surgery, without all the bleeding as before. He was confident that he had accomplished what he had set out to do. I sensed that he was quite relieved and told me to get something to eat as you would be in recovery for awhile. He did not call at any other point during the surgery. I was elated and proceeded to call the rest of the family with the fantastic news. I was allowed to see you in recovery a couple of hours later. I couldn't wait to see you. As agreed upon that morning, I would give you a thumbs up if the surgery was done. I walked over to you and gave you the thumbs up and told you it was over and successful. Your eyes were aglow and you had the widest grin ever. Couldn't tell if it went from ear to ear, as your head was wrapped in blankets because of the cool temperature in that room. I can't tell you how happy I was that it was over, as I don't know what would have happened if things had gone the other way. Thank God for the prayers and positive energy we received. At that point I took a long walk down to Fenway, had a bite to eat and went back to the room to wait. I was so happy I could have walked all night long! The adrenaline was flowing readily! What a great smile you had when you were rolled into that room. No more ICU for you. That was quite a relief in itself. A good sign at that."
I don't remember writing words on the sheet at all. At all. And I hadn't remembered the "thumbs up" or "thumbs down" part until she reminded me. I do now. Barely, but it is familiar. I must have been so frustrated when I had the breathing tube and couldn't speak and not knowing what the outcome had been after surgery #2 that I didn't want that to happen again if I came out surgery #3 with a breathing tube.
I remember mostly pain. I also remember that a day or two before Mother's Day, I was given a new mendication for nerve pain, I think. We are still not so sure what exactly happened, but I reacted negatively to it. Like I was talking NON-STOP, even through my sleep. I was having difficulty recognizing "real" time and "dream" time. I kept asking Ursula, "Am I awake or asleep?" or "Did I just make any sense?". Weird. I vividly recall a nurse telling me that they accidently gave me a double dose, but whatever the case, the medication was stopped either the night before or the morning of Mothers Day. Ursula worked like crazy to prepare me for a visit from my father and my kids after the ordeal. She says:
"On Mother's Day Erica came up with Dad, Ben and Aunt Mary. You were wide awake and looking forward to the family visit. You wanted to get cleaned up and look good for the family. You had taken that new medicine again before I left to get a coffee and some things for you at CVS. Upon my return you were in a deep sleep. It was difficult for you "to come to" when I tried to wake you. I immediately went to the nurse and told her that medicine had to be STOPPED as you were a complete zombie and not making any sense. I had all I could do to get you ready for the visit. I knew you didn't want to look like that and I knew I didn't want you to look like that. Especially not on Mother's Day! Didn't want the others to be stressed out. Tried to clean you up but they arrived earlier than expected. The nurse, aid and myself worked as quickly as possible while they waited outside. Finally they were able to enter. It was a precious moment. Bittersweet though. I felt awful leaving you later that day, as I knew you felt comfortable and safe with me there. I felt the same way. But, I had to go back to work. It killed me. Actually, I hated to leave. Thank God you came to Mystic a few days later.
I do remember that Ursula left and my Aunt Mary came to be with me that day. I do remember one very awful night. No doubt, my Aunt Mary remembers quite well herself. I was in so much pain. SOOOOO much pain. The nurse, Diane Hicox, had always been wonderful to me. One of the few. I think I may have begged for more drugs, but she didn't budge. I just laid there and moaned and moaned and moaned. I must have driven my Aunt crazy. Diane came in with another nurse, a male. I can't remember his name for the life of me, but I liked him a lot. He was very, very strong so when they would adjust me or move me, it never hurt. I didn't wobble to and fro as with the female nurses. This guy was like a bull, and I could feel his brute strength and yet he was as gentle as a lamb. Sweet man. They must have tried to adjust my position ten times that night, but nothing helped. It was by far, the most pain. Finally, I knew that I had to settle down somehow. My Aunt Mary suggested I think of something else. As she and I laid there (I was in a private room to allow her to stay with me), I started a "story" in my head. I have no idea why (drugs! I'm telling you drugs make you WEIRD!) I thought of Princess Diana (like, why?) and I started on her life story. Or what I know of it! I clearly remember it started like this: "There once was a little girl named Diana, Princess of Wales. Diana was born to the Prince of Earl and Frances".........I couldn't remember the mother’s name. Hmmm......I mused out loud, "What was her name?". I asked Aunt Mary, "Are you listening?" and she said "Yes, but finish it soon! I'm tired!". I didn't know whether to laugh or cry. I continued my story, out loud mind you. She says I talked for hours. I don't know. I just remember that night as being one of the absolute worst of my life.
My next vivid memory was when I was told that they were moving me from the neurology ward in the Farr building back to the West Campus, Dr. Glazer's orthopedic ward!! Yeah! At last. I felt like I would be better off there as I was more familiar with the nurses there. I remember on that last day I had a Scottish nurse who seemed like quite the unfriendly brute at first, but as the day went on, we warmed up to her. I had a visit from the sweet PT, who's name I can't recall either! I was moved late afternoon/early evening, I believe.
We arrived and I felt really good about the move. We ordered dinner. Can I tell how SICK I was about that food. I think I had eaten everything that was offered and it was getting all too old. It almost made me sick to my stomach! I remember that Aunt Mary's hadn't arrived and we waited and she had to call and when it arrived, she couldn't even eat it. At that moment, she promised me that when I got to a rehab, she was going to get us a steak dinner worthy of eating!!! The nursing care was so disappointing. I had never had this particular nurse before, and she was not good! I recall my Aunt Mary saying, "I don't know why you were so excited to come here, it's not any better!” However, other than that night, any time I had spent in the West Campus had far exceeded being at Farr. Not saying much for the nursing care in that hospital, that's for sure. We finally went to sleep. Aunt Mary, for the first time, slept on a cot, instead of in the chairs in the room. Ursula had told her how uncomfortable the cots were and that the chairs were more comfortable, but Aunt Mary regretted listening to her and expressed how she had wished that she had asked for a cot earlier! The next morning, I awoke in excitement because I had been told the night before that PT would be coming in the morning with a walker and getting me up to walk! But instead I got another crabby nurse who wasn't all that helpful with anything who told me that she didn't know anything about PT! The next thing I know Dr. Glazer's PA came in and although I don't remember the conversation, I found him rude for the first time ever. My Aunt Mary said it's because I use too many words and take too long to ask a question! Well, she may be right, but toooooo damn bad, this is MY body, MY mind and suck it up!!! Then he came back with Dr. Glazer and I don't really remember anything about that conversation except my Aunt Mary commenting on his tie and her being upset because he walked away from her as she was speaking!! Boy, was she annoyed! I thought it was kind of funny, ya gotta know Dr. Glazer!
The next thing I know, the nurse returns and tells us I'm being discharged! Discharged??? I haven't even walked yet? Evidently, when insurance runs out, insurance runs out!! Oh the work involved in obtaining the ambulance etc. It was hectic. Aunt Mary was running around trying to get everything packed up and it was crazy. The ambulance arrived a little early and that was that.
The ambulance crew was great -wish I remembered their names, but I can't. Naturally. The guy drove with Aunt Mary up front and the young girl sat in the back with me. It was extraordinarily painful. But that sweet little young thing did her job well. She spoke with me the entire trip to Mystic. She did everything in her power to keep the conversation animated, all so to make the trip more bearable. Although I have no doubt that the driver was trying to be careful, in the back however, there were some curves that seemed pretty hairy as I lay on this little gurney. She would hop off her little seat and rush to my side and secure the gurney as best as possible to minimize any movement. Once she did even holler, "Slow down around the curves please!" and rolled her eyes at me. She was such a sweetie.
We arrived in Mystic! The story of my arrival is quite funny............
"You went to ICU where we saw you before they left to come back to Westerly. I went to the hotel to sleep, only to wake and call the nurse at 5 a.m. to see how you were doing. A couple of hours later I was by your bedside for 24 plus hours. Because you were intubated and couldn't talk, you spelled out words on the sheet letter by letter. It was grueling to understand what you were trying to ask. However, after many attempts I understood you wanted to know the outcome of the surgery. I remember asking you if you really wanted me to tell you and you replied yes with a nod. I delivered the news that the surgery had not been completed because Dr. Glazer was concerned for your safety, as you bled so much and the dura was practically non-existent again. It all but killed me to tell you the truth. Part of me wanted to lie to protect you but I knew I couldn't do that. You couldn't talk but your eyes started to tear up and my heart broke for you. It was one of the most difficult times in my life. You continued to spell out words on the sheet. I felt so horrible trying to understand you, sometimes with little success. One time, after quite a time and much frustration on both our parts, I figured out you were having a hot flash! I then took off the covers and fanned you. I felt so good that I could help you in some way. When they took the tube out three days later, you were so happy. You so hated that tube! A day later you were able to have some liquid lunch and dinner. The following morning for breakfast you had a whole breakfast sandwich. It was great to see you eating but I really was wondering what was going on in your head. I was fearful of that. Didn't know how you were going to cope until the next surgery.
He called after the third surgery about 4 p.m. while I was waiting in your room. I could tell by the tone of his voice that he had good news to deliver this time. He told me that he was able to complete the surgery, without all the bleeding as before. He was confident that he had accomplished what he had set out to do. I sensed that he was quite relieved and told me to get something to eat as you would be in recovery for awhile. He did not call at any other point during the surgery. I was elated and proceeded to call the rest of the family with the fantastic news. I was allowed to see you in recovery a couple of hours later. I couldn't wait to see you. As agreed upon that morning, I would give you a thumbs up if the surgery was done. I walked over to you and gave you the thumbs up and told you it was over and successful. Your eyes were aglow and you had the widest grin ever. Couldn't tell if it went from ear to ear, as your head was wrapped in blankets because of the cool temperature in that room. I can't tell you how happy I was that it was over, as I don't know what would have happened if things had gone the other way. Thank God for the prayers and positive energy we received. At that point I took a long walk down to Fenway, had a bite to eat and went back to the room to wait. I was so happy I could have walked all night long! The adrenaline was flowing readily! What a great smile you had when you were rolled into that room. No more ICU for you. That was quite a relief in itself. A good sign at that."
I don't remember writing words on the sheet at all. At all. And I hadn't remembered the "thumbs up" or "thumbs down" part until she reminded me. I do now. Barely, but it is familiar. I must have been so frustrated when I had the breathing tube and couldn't speak and not knowing what the outcome had been after surgery #2 that I didn't want that to happen again if I came out surgery #3 with a breathing tube.
I remember mostly pain. I also remember that a day or two before Mother's Day, I was given a new mendication for nerve pain, I think. We are still not so sure what exactly happened, but I reacted negatively to it. Like I was talking NON-STOP, even through my sleep. I was having difficulty recognizing "real" time and "dream" time. I kept asking Ursula, "Am I awake or asleep?" or "Did I just make any sense?". Weird. I vividly recall a nurse telling me that they accidently gave me a double dose, but whatever the case, the medication was stopped either the night before or the morning of Mothers Day. Ursula worked like crazy to prepare me for a visit from my father and my kids after the ordeal. She says:
"On Mother's Day Erica came up with Dad, Ben and Aunt Mary. You were wide awake and looking forward to the family visit. You wanted to get cleaned up and look good for the family. You had taken that new medicine again before I left to get a coffee and some things for you at CVS. Upon my return you were in a deep sleep. It was difficult for you "to come to" when I tried to wake you. I immediately went to the nurse and told her that medicine had to be STOPPED as you were a complete zombie and not making any sense. I had all I could do to get you ready for the visit. I knew you didn't want to look like that and I knew I didn't want you to look like that. Especially not on Mother's Day! Didn't want the others to be stressed out. Tried to clean you up but they arrived earlier than expected. The nurse, aid and myself worked as quickly as possible while they waited outside. Finally they were able to enter. It was a precious moment. Bittersweet though. I felt awful leaving you later that day, as I knew you felt comfortable and safe with me there. I felt the same way. But, I had to go back to work. It killed me. Actually, I hated to leave. Thank God you came to Mystic a few days later.
I do remember that Ursula left and my Aunt Mary came to be with me that day. I do remember one very awful night. No doubt, my Aunt Mary remembers quite well herself. I was in so much pain. SOOOOO much pain. The nurse, Diane Hicox, had always been wonderful to me. One of the few. I think I may have begged for more drugs, but she didn't budge. I just laid there and moaned and moaned and moaned. I must have driven my Aunt crazy. Diane came in with another nurse, a male. I can't remember his name for the life of me, but I liked him a lot. He was very, very strong so when they would adjust me or move me, it never hurt. I didn't wobble to and fro as with the female nurses. This guy was like a bull, and I could feel his brute strength and yet he was as gentle as a lamb. Sweet man. They must have tried to adjust my position ten times that night, but nothing helped. It was by far, the most pain. Finally, I knew that I had to settle down somehow. My Aunt Mary suggested I think of something else. As she and I laid there (I was in a private room to allow her to stay with me), I started a "story" in my head. I have no idea why (drugs! I'm telling you drugs make you WEIRD!) I thought of Princess Diana (like, why?) and I started on her life story. Or what I know of it! I clearly remember it started like this: "There once was a little girl named Diana, Princess of Wales. Diana was born to the Prince of Earl and Frances".........I couldn't remember the mother’s name. Hmmm......I mused out loud, "What was her name?". I asked Aunt Mary, "Are you listening?" and she said "Yes, but finish it soon! I'm tired!". I didn't know whether to laugh or cry. I continued my story, out loud mind you. She says I talked for hours. I don't know. I just remember that night as being one of the absolute worst of my life.
My next vivid memory was when I was told that they were moving me from the neurology ward in the Farr building back to the West Campus, Dr. Glazer's orthopedic ward!! Yeah! At last. I felt like I would be better off there as I was more familiar with the nurses there. I remember on that last day I had a Scottish nurse who seemed like quite the unfriendly brute at first, but as the day went on, we warmed up to her. I had a visit from the sweet PT, who's name I can't recall either! I was moved late afternoon/early evening, I believe.
We arrived and I felt really good about the move. We ordered dinner. Can I tell how SICK I was about that food. I think I had eaten everything that was offered and it was getting all too old. It almost made me sick to my stomach! I remember that Aunt Mary's hadn't arrived and we waited and she had to call and when it arrived, she couldn't even eat it. At that moment, she promised me that when I got to a rehab, she was going to get us a steak dinner worthy of eating!!! The nursing care was so disappointing. I had never had this particular nurse before, and she was not good! I recall my Aunt Mary saying, "I don't know why you were so excited to come here, it's not any better!” However, other than that night, any time I had spent in the West Campus had far exceeded being at Farr. Not saying much for the nursing care in that hospital, that's for sure. We finally went to sleep. Aunt Mary, for the first time, slept on a cot, instead of in the chairs in the room. Ursula had told her how uncomfortable the cots were and that the chairs were more comfortable, but Aunt Mary regretted listening to her and expressed how she had wished that she had asked for a cot earlier! The next morning, I awoke in excitement because I had been told the night before that PT would be coming in the morning with a walker and getting me up to walk! But instead I got another crabby nurse who wasn't all that helpful with anything who told me that she didn't know anything about PT! The next thing I know Dr. Glazer's PA came in and although I don't remember the conversation, I found him rude for the first time ever. My Aunt Mary said it's because I use too many words and take too long to ask a question! Well, she may be right, but toooooo damn bad, this is MY body, MY mind and suck it up!!! Then he came back with Dr. Glazer and I don't really remember anything about that conversation except my Aunt Mary commenting on his tie and her being upset because he walked away from her as she was speaking!! Boy, was she annoyed! I thought it was kind of funny, ya gotta know Dr. Glazer!
The next thing I know, the nurse returns and tells us I'm being discharged! Discharged??? I haven't even walked yet? Evidently, when insurance runs out, insurance runs out!! Oh the work involved in obtaining the ambulance etc. It was hectic. Aunt Mary was running around trying to get everything packed up and it was crazy. The ambulance arrived a little early and that was that.
The ambulance crew was great -wish I remembered their names, but I can't. Naturally. The guy drove with Aunt Mary up front and the young girl sat in the back with me. It was extraordinarily painful. But that sweet little young thing did her job well. She spoke with me the entire trip to Mystic. She did everything in her power to keep the conversation animated, all so to make the trip more bearable. Although I have no doubt that the driver was trying to be careful, in the back however, there were some curves that seemed pretty hairy as I lay on this little gurney. She would hop off her little seat and rush to my side and secure the gurney as best as possible to minimize any movement. Once she did even holler, "Slow down around the curves please!" and rolled her eyes at me. She was such a sweetie.
We arrived in Mystic! The story of my arrival is quite funny............
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