Well...much has changed since my last post. On Thursday evening, a week ago, I suddenly experienced excruciating and immobilizing pain in my leg. I was screaming. Somehow, I managed to get into my bed, and get my leg into a position that was comfortable. My daughter came in, in response to my yelling and asked what she could do. I did not know. I lay there for a little while, crying, trembling, and anxious, not knowing what to do. Finally, I picked up my cellphone and emailed my doctor. "I am having excruciating pain and I cannot move", I wrote. He responded, "Come to the ER at EinKerem". I was so befuddled I had to ask him how I should get there. He told me either with a friend or in an ambulance. I realized very quickly that there was no way I would be able to go with a friend. I could not move.
Having never had the experience of having to call an ambulance before (in Israel) I was unsure how to do this. I asked my daughter to call my friend, Robin and ask her to come over. But Robin was not answering her phone. So then I asked her to call Pam. Pam was home, and she came over immediately. It seemed to me that she must have FLOWN she got there so fast. She came to me and I was crying and shaking and told her that I needed to get to the ER. She knew just what to do, and she called Hatzalah and in less than one minute Hatzalah was there!
I was so terrified because I could not see how they were going to manage to transfer me from my bed to the gurney without causing me pain. But they did! There were so professional about it I was able to relax a little bit and to know that I was in good hands. One of the EMT's was a friend, Sergio Geralnik. He was extremely considerate of me, and he even asked the other EMT to drive instead of himself, so he could sit in the back with me. He did that because he knew me, knew about my hearing impairment and knew that I did not speak Hebrew so well.
We made it to the hospital in pretty good time. I was then brought into the ER and transferred to a hospital gurney. Again, it was done pain free. Pam had followed them in her car and came in to give me my things that she brought with her (that my daughter had put together for me). She was only able to remain for a few minutes because she had to get back to her children. And then Robin walked in. She had food for me (yummy sesame noodles) and she stayed with me for company and moral support until the wee hours of the morning.
I had remained in contact with my doctor the whole time via email - "Hatzalah is here", "We are leaving now", "We are on the way", "We are at the ER", and "my X-rays were taken". My doctor was performing surgery at Hadassah Har HaTzofim. He came to me as soon as he was done, which was not long after I had arrived. He looked at my X-rays, he looked at my leg, and could not see anything wrong. But he had me admitted to the hospital for "pain management". He also informed me that he would be away for three days (it was Purim, a holiday weekend).
So, I spent another Shabbat in the hospital only this time it was not so bad. I had a better expectation of what would be. I was also too emotionally and physically exhausted to care so much. On Sunday another set of X-Rays were taken. On Sunday one of the nurses came to me and urged me to get out of bed and into a wheelchair. I was terrified but I finally agreed. I agreed because I was in pain -- I needed to use the bathroom. I had been given a diaper to wear but we are so conditioned to only relieve ourselves when we are sitting over an open hole, so I was unable to do so. After much cajoling I agreed and he helped me into the special bathroom wheelchair I took a book and went into the bathroom and sat. Later when he came to take me back to my bed he inquired as to my "success" -- I answered him with a smile, and his entire face lit up and he laughed and he was so proud of himself for having persuaded me to get up and into the bathroom!
On Monday my doctor came to see me. He again checked my x-rays and my leg and examined me. And what he told me stunned me. He said, "I'm stumped. I have no idea what is going on with you." And then he said, "I will figure something out" and he left me. Now, you can only IMAGINE what was going in MY mind. I was in tears, terrified, and my anxiety level was through the roof. After I managed to calm myself down, I turned to my computer and logged into Facebook and went to a Facebook support group to which I belong for people who wear frames such as the one I was now sporting. I had been sharing my experiences with them and finding the group to be quite supportive. This time I wrote about the pain I was having and asked about them and what pain they might have experienced. I asked about nerve pain and what that was like. I was able to ascertain that the pain I was experiencing did indeed seem to be nerve pain. I further inquired about whether the pain continued when the frame was removed or if it went away. Those that answered me said it went away. So feeling a bit more relieved I resolved to bring up nerve pain to my doctor the next day.
The next day he showed up, with two other people and they examined me and discussed my leg, with me. Again, there was a sense of know really knowing what was going on. I asked him if it could be nerve pain and he said no. I said how do you know it is not nerve pain? He said, because he has seen nerve pain and he knows what it looks like and this is not it. But when it seemed that all they were going to do was increase the narcotics I was taking I interruped them and said, "are you sure that something like gabapentin would not be better?" At that point he turned to his colleague and ask her to put a request in for the Pain Clinic to come by.
Shortly thereafter, the pain clinicians came by. They looked at my records, my x-rays, and asked me a lot of questions. Then they prescribed Lyrica (pregablin) which is similar to gabpentin and is used for nerve pain. I started on that two nights ago. It is supposed to take about a week or two for it to take effect. In the meantime I am slowly feeling better.
A retrospective look at how I managed myself after the surgery reveals that I was probably doing too much and had too much stress in my life. I was working, working OUTSIDE the home, and going up and down the stairs outside my house on a daily basis, I went away for the first two Shabbatot I was home, I went to a late night wedding, and to add to all this, life in my home was rather stressful. I was having to care for myself without any help whatsoever, while at the same time I was privy to the vicissitudes of my daughter's family. I love my family, and grandchildren very much but I really needed a peaceful, loving, and warm environment in which to recuperate. I was not getting that and my stress level was climbing higher and higher.
I was also becoming depressed. I was feeling sad, and lonely, and crying all the time. So, it should have come as no surprise that I "fell apart" by having a major painful episode. The pain was real. I still have it. I do believe that all the factors above contributed. I felt that there was a stunning lack of compassion for me by the players in my life - including my daughter, son in law, mechutenet, and my boss. It was all just too much for me. Perhaps it was MY fault. I played things down. I tried to smile and go along. I tried to be valiant. It simply did not work.
I have been in the hospital now just over a week and have been given the opportunity to rest, to relax, to heal, and to even treat my anxiety. We are planning for me to go to a rehab center when I leave here. I do not know if that will happen. The decision is ultimately out of my hands. It is up to the nurse from my Kuppah to decide that. If I cannot get into a rehab center, then I will go to my sister in law in RBS. It is not ideal -- their bathrooms are not at all "accessible", even though they are on the same floor as my bedroom and the main rooms of the house. But it is preferable to my only other alternative which is home -- and that is not an alternative for me at this time.
Next update will include news about whether I was successful in getting into a rehab center...
Friday, February 15, 2013
Mornings are the best, but by the time noon rolls around, I am wiped out. My leg either hurts me or is extremely uncomfortable. I am quite helpless. I cannot stand or walk on my own and must use a walker. This means I cannot carry a damn thing. We considered putting a basket on my walker but that did not work because my walker does not fit through the doors to any of the bathrooms unless I go sideways and even then it is a "just fit" with no room for a basket on the walker!!
In the kitchen I can manage a little bit -- I can get food from the cabinets or fridge and place them on the counter which is close. I can even prepare some food. I can slide my prepared food over to the part of counter close to the table and I can sit down, reach over the get the food and sit down and eat. But I cannot carry anything over to my "office" -- which has now been moved to a corner of my living room as I cannot get down the stairs to where it normally is.
I can do stairs, albeit with humongous difficulty but there must be at least one railing for me to hold onto. There are NO railings on the half flight of steps at the end of the hall which leads to my office. The only way in and out of my home is to go down or up a flight of stone steps. There is a railing, but only one one side of the very wide staircase. I use the railing with a crutch to make my way up or down. Up is excruciatingly difficult. Down is less so.
I have exercises I am supposed to do daily. I finally got smart and started doing them first thing in the morning rather than heading straight for my corner with the computer and cup of coffee. So, now that I am doing them I hope it will help to strengthen the leg so I can start putting more and more weight on it and less on my hands, arms, and pectoral muscles. Speaking of my pectoral muscles -- they HURT -- from using them! It makes moving around ever that much more difficult. OY!
I am taking drugs aplenty. Targin, Optalgin, Percocet, Cephalex, Vitamins C, D and Calcium, a drug to prevent blood clots (injected into my abdomen daily), Xanax (prescribed as a muscle relaxant when the calf muscles of my right leg were cramping -- but Xanax is also helpful at reducing my anxiety a bit and helping me sleep, nice side effects). I am taking Arnica (sublingually) to help my bone and muscle tissue to heal, eating a banana a day for the cramping.
I do not have much of an appetite, but I eat. Yogurt and granola for breakfast, soup or pasta for lunch, or maybe a sandwich. Dinner is whatever my daughter decides to make. Could be chicken, or meat, or soup or something. I miss cooking.
I am keeping my leg elevated much of the time but I alternate and sometimes sit normally with my leg down. My PT told me I should vary my position a lot and I should get up and walk a bit. Hard to do with the upper muscles in pain!
Everything I do takes SO MUCH longer to do. I have to plan ahead because if I forget something it means another long painful walk to get it (esp if no on else is home or if my daughter is pre-occupied with caring for the kids). I was recently invited to spend a Shabbat at the home of a friend who is getting married, for her Shabbat Kallah. The plan was to make the "party" time of the Shabbat Kallah at her neighbor's house. I told them that I cannot do that kind of walk and their response was, "it is only one house over". They have NO IDEA that "only one house over" FEELS like a hundred houses over for me. It is too much for me yet. The plan was changed, however, when they learned that the forecast is for rain. Now it will take place in my friends home where I will be anyway.
Taking a shower. Now there's an experience! The shower in my private bathroom is a small stall with a very narrow aperture through which to access it. So, I cannot use that. That means I have to use the shower/tub in the main bathroom. As I mentioned above. access to the bathroom is sideways, the only way I and my walker will fit through the door. Once in, I shut the door and then: I place a large towel on the floor. Then there is a folding chair I open on top of that, and I place the chair so it is facing the tub, up against the side wall of the tub. (Bear in mind, I am doing this standing on one good leg and one bad leg with my walker next to me in case i need to grab it.) I get undressed (I actually get undressed in my bedroom, and I have to remove all the surgical dressings from the pin sites before I shower, I put on a bathrobe and hobble out to the bathroom.) I drape my bathrobe over the walker (where I have two towels waiting for me there as well). I sit on the folding chair, and then very carefully lift up my legs and bring them down over the tub wall and into the tub. Then I shift my body forward until I am sitting on the tub edge. The folding chair remains in place behind my butt. I turn on the water and using the hose and shower attachment I get myself wet and then soapy and then rinse and then shampoo my hair and rinse that. Then, I carefully go back onto the folding chair and move my legs out of the tub. I cannot use a shower chair in the tub -- it is too narrow for any tub chair to fit. (no matter which way we face it). I cannot use a tub bench -- the tub edge next to the wall is far too narrow for that to be secure. I do not OWN the place so I cannot invest in adding accessible fixtures to the tub. So, this is what I am stuck with. It works. I get clean. It is just a bit more work than ideal.
I am back to work already, which has its good points and bad. Good in that it forces me up and about and out of the house and up and down those stairs. Bad for the same reasons and it both tires and stresses me out. No choice for me really, as I need the moolah, even if it is really a pittance. I get home about 2 PM from work and I am exhausted. I eat lunch and then I either take a cat nap or a shower, depending on the day and how I feel and what else is planned. If the PT or OT is coming that is a consideration.
I have at times been so exhausted that all I could do is cry - not the tears of emotional overwroughtness, but tears that stem from a physical organic source that I cannot stop even if I wanted to. Similar to the post partum tears I shed after I gave birth to my daughter Chloe. But there IS some emotional fallout for me. I am so independent and am trying to be so strong, wanting to be strong and not to fall apart -- it is at times overwhelming for me to feel this way. It is a new way of being for me and I am NOT used to it. My surgeon tells me, he is glad I am so independent. He likes that I am being so strong. And, I want to tell him, "but I am not. I am weak. I am feeling totally dependent." And I want to cry about that -- that I may not be living up to his perception of me as a strong person, someone who is so independent. Because I do not feel strong. I do not feel independent at this moment.
This is my life -- for now. I know it is temporary. I know it will change -- for the better. I know I have to go through this. And I am blessed -- I was given the opportunity to do this, to have this surgery, and in the process I am learning so much more about myself and what I can tolerate and what I can do, and what I cannot do. The hardest part for me is to forgive myself when I feel I am being weak and scared and stupid. It is hard to allow myself that.
Tuesday, February 5, 2013
On January 29th I entered Hadassah Ein Kerem hospital for a major surgical procedure to correct a deformity in my right leg. You may read my previous posts for more information about that deformity and about my travails dealing with the medical system here in Israel where I now live.
I went to the hospital by taxi,(costing me a pretty penny), armed with a walker, all my medical records, a few changes of clothing and underwear, some toiletries, my cell phone, and eReader. And of course, a certain amount of confidence mixed with trepidation.
I went alone as I was unable to arrange for a family member to accompany me. This is Israel and life in Israel can be rather inconvenient under the best of circumstances, and this was not one of those times. However, I was able to arrange for a very good friend to be there for me when I came out from under. I chose her not only because she is a good and dear friend and because I trusted her implicitly, but also because it so happens that by avocation she is a health information management expert, and by experience she has intimate knowledge of the Israeli medical establishment and system. It also did not hurt that she speaks Hebrew fluently. I have a pretty good grasp of conversational Hebrew, and she would later write in an update to my friends and family that “her Hebrew is good enough for her needs”. As promised she was there when I came around.
After I arrived at the hospital and went to the Orthopedics ward I was checked in and assigned a room. I was shown where to put my things – there was a safe in the room with an electronic keypad with which I was to create my own passcode. Unfortunately, the safe’s locking mechanism was broken and I was unable to lock it up. I thus refused to leave the room until it was either fixed, or I was moved to a room with a working safe, or some other viable alternative was offered to me for the security of my cellphone, eReader, and cash/credit cards. I left my jewelry at home. The aides came with the gurney to take me to the OR, but I refused to go. They kept telling me “but they are waiting for you in the OR”. I would not move, and said, not until my belongings are secure. One of the nurses suggested I leave the stuff in a bag at the nurse’s station. I asked if she would take responsibility for my things to which she replied, “no way!”. Again I refused to move. Finally, they brought in security. After a failed attempt to fix the safe’s locking mechanism, they used a key to open and then lock it. But they would not give me the key (it is a master). But, they agreed to take responsibility for my things. And so, I agreed and then was on my way.
Interestingly enough, I was still pretty calm and not so scared at this point. Last month, when I had been originally scheduled for the surgery, I had been far more nervous. (Read previous post to learn why that surgery was cancelled at the last minute). I was brought to the prep room that is directly before the OR. There, I was prepped for the surgery. Connected to IV. Last minute vitals read. Then the anesthesiologist arrived. We spoke briefly and then I was brought into the OR and placed on what I can only describe as a board. People refer to this as the operating table but it was little more than a board.
Since I had elected to use regional anesthesia, an epidural, I was first instructed to sit on the board, legs hanging over, hands on my knees and then to lean over a bit while the lumbar puncture was made. After successful insertion of the catheter for the administration of the epidural, I was told to “sit up straight” and then I began to feel an icy cold liquid begin to course through me.
Before I move on, I want to remind my dear readers that I am severely to profoundly hard of hearing and wear hearing aids. But for the surgery I’d been told to remove my hearing aids and they were locked up in the safe. (At a cost of appx $8000 USD of course they would be locked up!) Without my hearing aids I am functionally deaf. So all of the input I was experiencing at this point was visual, or via my sense of touch, or smell. Taste was not on the menu here!
Shortly thereafter I was told to lie back on the board. By now I was shivering uncontrollably, teeth chattering audibly. My arms were placed on boards perpendicular to the one on which I now lay, and strapped down – a surgical cross or crucifix, if you will. Then, I began to feel slightly “woozy” which indicated to me the beginning of the administration of a sedative, as per agreement I had with the anesthesiologist. I had told him that I wanted to be as unaware as possible of what was going on. I thought it would be too scary for me otherwise. After that moment I remember nothing of the surgery (although I discovered some vestigial memory, about which I will write a bit later on).
My next memory is of coming around, becoming conscious, and feeling weird, and some pain, and seeing a hustle and bustle of nurses and doctors around me, and then seeing the smiling face of my good friend, Yocheved Golani – the aforementioned good and dear friend who would be there for me when I came out of surgery. As promised, there she was. I vaguely recall checking under my blankets to see my new body piercing. Here is what it looks like:
My memory of being in the recovery room is somewhat vague. I do know that I was after a while somewhat lucid, I vaguely recall my surgeon coming to check on me, and I recall talking to Yocheved, and being shown my PCA –although perhaps that did not happen until I was safely ensconced in my room. I will have Yocheved add to this to fill in the gaps where my memory has lapsed. I also do remember being told that the anesthesia stopped working at some point but everyone was quick to tell me that it was already after the surgery had been completed. But I fear I went through some real trauma beyond what was expected in terms of pain that I was feeling. That fear is fueled by some of the “nightmares” I have had subsequently in which I seem to be in a dark, cold place and I experience the feelings of my body being yanked and clamped and invaded – and during which I experience a real full body “jerk” in my sleep that wakens me.
As mentioned before, I was given PCA (Patient Controlled Anesthesia) of morphine. I think it helped me. It is hard for me to know. I was still bedridden and suffering the indignity of wearing a diaper. Gosh those things are HUGE! Initially I seemed to be unable to urinate—which I was told is a “side effect” of the medication. I felt enormous pressure on my bladder and it was overwhelmingly uncomfortable. I found that I had to “help myself along” by using my hands to press down on my bladder. (Is this TMI? If so, sorry – but I feel that these are details that no one discusses and so the reality of what one can expect to experience remains a secret. The unknown can be very scary, at least for me. I prefer to know more rather than less.
Some of my memory in terms of the sequence of events is a bit hazy. My friend went home early Tuesday evening (at my urging as I knew if she stayed longer she would have a harder time getting home – she was dependent on either public transportation, or “tremping”, the Israeli term for hitchhiking). I think I slept well that night. In the morning I woke in pain but a few presses of the “pain pump” helped me with that. I do not recall if it was on Wednesday or on Thursday that I asked to be taken to the bathroom using the special wheelchair with a hole in it that can be wheeled right over the toilet. I THINK I did that on Wednesday. I do remember that when my surgeon came round to see me and I told him that I was using the toilet and not a diaper he was quite surprised. He had not expected that I would attempt being “up and about” so quickly. It was not until the next day, Thursday, that the physiotherapist came around to see me and to begin his treatment with me. I remember I was terrified of it. I had, at that point been taken off the PCA and given a round of drugs which I could (and would) take. The main pain drug I was given is Targin which has oxycodone and naloxone. I was also given Optalgin (dipyrone- an analgesic). I have limited my intake of this and I may substitute Tylenol for this. The third drug for pain I am given is Percocet. That has Tylenol in it and more Oxycodone. I guess I have to be careful of the amount of Tylenol I ingest. I only take the Percocet “as needed”. I have been limiting myself to taking it only once a day. I think I would deal better with the pain if I took it once in the morning and one at night. I might do that and stop the Optalgin altogether. Other meds I am taking are Clexane, an injected drug once a day that is an anti-coagulant to prevent blood clots, and vitamins D and C and Calcium, and Cefurax, an antibiotic. I have added the homeopathic Arnica to this. Arnica is supposed to promote healing of muscle and bone tissue. I also must change the dressings on my pin sites 2x a day.
Anyway I made sure to take Percocet about a half hour before the physiotherapist was due to see me. I figured, rightly, that it would make it easier for me to do the exercises which he would surely give me. It was VERY scary for me to take those first steps, albeit with a walker. I am not putting full weight on my leg, I cannot do that, but partial weight. It is scary and, without the Percocet, painful. But I am doing it and putting myself through more exercise by taking “walks”. I would walk the length of the corridor and back. It might take me a half hour or more to do it and I would be EXHAUSTED at the end, but I feel that it is very important for me to remain active.
On Wednesday morning, when my surgeon came to see me, he told me, upon examining my leg in the frame that the rotation looks good, but the angle may need some correction. On Friday morning when he came I told him that I agreed that the angle did not look right. He said he would fix it on Sunday morning. I said no, I wanted him to fix it right then and there. He told me it would hurt a bit and I smiled and said, I just took Percocet. Strike while the iron is hot. He went and got his wrench and made the adjustments. It did not really HURT, it just felt like a lot of pressure on my leg and was not comfortable. But I am glad I insisted on his making the correction sooner rather than later. It made it easier for me to straighten my leg at the knee – I would not be able to have x-rays until I could do that satisfactorily and I would not be able to go home until x-rays could be taken and they were satisfactory.
On Sunday morning I was taken to the X-ray dept. I was told I would need to stand with my knees straight for the x-ray. No problem, or so I thought. Upon arrival I was asked to “please step up onto this (little itty bitty) stool” for the x-ray…! Well, there was no way I could do that. I had not brought my walker or crutches with me – I had not been told I would need them and there was nothing for me to grab hold of, to put my weight on so I could LIFT myself into that position. Finally, the aides there were “helping” me get up but they were so inept that I inadvertently wound up putting my FULL WEIGHT on the broken leg! I SCREAMED, and nearly passed out, but hyperventilated instead. Finally, though I was in the right place and I stood there, stony faced and ANGRY. There was NO REASON I should have had to endure that.
I also asked to be brought to the offices of Yad Sarah. Yad Sarah is an organization in Israel that helps to provide medical equipment and supplies to patients who need them. They actually do it for free, but one must pay a nominal fee to borrow an item – a fee which is reimbursed to the patient upon return of the borrowed items. I needed crutches as I had thought only to procure a walker prior to the surgery. I knew I would need the crutches to learn how to navigate stairs. An aide brought me down to the Yad Sarah office where I not only arranged to borrow a pair of crutches, but I also arranged for purchase and delivery of a showering chair. I could not borrow one as they did not have the kind that would be good for my needs and that would fit in my bathtub or shower! It was not so expensive (about $63 USD) and when I no longer need it I will likely donate it to a “gemach” here on the Yishuv in which I live (a Gemach is similar to the Yad Sarah service but they do not always require a deposit for borrowing. A Yishuv is a village.).
Later that afternoon, my surgeon came by and told me that he saw the x-rays and told me “they are PERFECT” and “you can go home tomorrow”. Of course, I was ecstatic about the return home but still worried about the issue of the stairs. There is a double set of wide stone stairs that leads (down) to my home. I still had not learned how to manage them.
The next day, in the morning, the PT came by and I told him he had to teach me to use the crutches and do stairs. He brought me to the PT room and began to teach me. In the hospital the PT is allotted only twenty minutes to spend with each patient. He stayed with me for a half hour. It was TERRIBLE. I absolutely could NOT manage the stairs. Believe me, I tried hard. So hard that I was DRIPPING sweat, I was SOAKED with sweat. In the end, I collapsed, crying. I finally realized that I was going to have to ask for a couple of friends to physically help me down the stairs to my home. My very good friend Moshe Fuld came. Upon arrival home I discovered that my memory had been faulty and that there actually was a railing on the stairs, albeit on only one side. Using one crutch and the railing I was able to make it down. At the point where the staircase took a turn, the railing disappeared. My friend Moshe was my “railing”. I leaned on him for each step the rest of the way (about 6 steps). It turned out not to be as bad as I had feared. But I knew that would not be able to manage the stairs inside my house – a half a flight down to the laundry area, guest room, and more importantly, my office. I spoke to my son in law and just this morning he moved my computer and phone upstairs to a corner of the salon. It is not ideal but it will suffice until such time as I am able to manage the stairs.
And this is where I am at now…I am home. Figuring things out, best ways and means of accomplishing my daily tasks, managing my pain, etc.