My story can be summed up in the following manner; I was admitted to the hospital where I stayed for three months, I was home for a month before returning back to work, I worked for nine months before taking a disability leave and relocated back to Palm Springs, CA to focus on my recovery. This sounds so simple but the minutes, days and hours of my life during this time were filled with many things. I decided to journal for no other reason but to be able to remember this time in my life with clarity. And so began my story of how I became paraplegic in a 24 hour period.
The week before my hospitalization was like any other week. I went through my normal routine of going to work, socializing with friends, grocery shopping, etc. The last social event I attended was a small and intimate Labor Day BBQ hosted by a dear friend and attended by fewer than ten people. The food was delicious, the company was great and I had a fabulous time!
The next morning I awoke at my typical 7:00 a.m. to get ready for work. This morning while making my way to the shower, I felt an odd sensation on the ball of my foot. It felt as if I had been bitten but there was no evidence of a bite nor was there a break in my skin. It felt as if I were walking on a tiny lump but there was nothing visible to be seen. I was spending too much time on this so I just ignored it and went to work.
Throughout the day, I noticed that it felt as if the lump was getting larger but still no visible evidence of anything wrong. At the end of the work day (5:30 p.m.) I was making my way to my car and noticed that the feeling in my foot was no longer feeling like walking on a lump but that now my foot felt as if it were falling asleep directly underneath my big toe. This pins and needles sensation began to spread to the entire bottom portion of my foot then to the top part of my foot and then began to travel up my leg.
I could not understand what was happening. My reasoning was that I had been bitten by something and most likely it was a brown recluse spider. As I am writing this, I realize how ridiculous my reasoning was and hind sight shows me that I should have gone to the emergency room much sooner than I did. I don’t exactly remember what time it was but it was already dark and it was later in the evening. Hind sight also reveals that it was even more ridiculous to drive myself to the hospital given the fact that I was rapidly loosing the feeling in my left leg. The drive time from my apartment in Culver City, CA was approximately fifteen minutes away from the hospital in Santa Monica (without traffic).
I parked my car in the Emergency Room visitor parking area and while gathering my purse and keys, I noticed that a security guard was standing close to my car. I opened the door to get out and immediately began to panic as I realized that I was losing the ability to control the movement of my left leg. The security guard asked me if I was ok and wanted to know if I needed a wheelchair. I don’t know why I felt embarrassed at the moment but I did and I tried to keep a stiff upper lip and jokingly said to him that I didn’t need a chair but that I would love it if he could escort me inside. We interlocked arms and he walked with me the approximate fifty feet from my car to the front door. By the time we made it to the inside of the double doors, I was in need of the wheelchair because I didn’t feel as if I could stand up much longer.
I was rolled into a little room where an intake nurse took my vital signs and asked me innumerable questions about why I was paying them a visit that night. All my vital signs were within the normal levels and so I was taken to the interior of the emergency room and transferred to a gurney/bed.
Blood was drawn for testing and I was requested to give them a urine sample. I didn’t feel that I could urinate at that time so we waited awhile. When I felt that I could give a sample, I attempted to stand up but immediately lost my footing and began to fall to the floor. Thank goodness the nurse was right next to me at the time. My left leg was no longer bearing my body weight and I had to proceed to the restroom in a wheelchair. It was necessary for the nurse to assist me in something so simple as providing a urine sample. At this time, I really began to worry about what was happening so quickly to me. I thought back to all the documentaries that I had previously seen where spider bites or insect bites resulted in rapid onset of similar symptoms. I reasoned in my mind that the doctor would be able to rectify this and at the worst I would be able to go home in several days.
It was getting later in the evening and there wasn’t much activity in the emergency room that night so they decided to move me to a part of the emergency room that was closer to the front desk and staff. I was transported in a wheelchair and a nurse helped me up onto another bed where I was sitting with my legs hanging over the side of the bed. Then suddenly, I felt a warm wet sensation on the bed and on my legs. I was shocked to see that I had urinated without knowledge. The last recollection that I have of the emergency room that night was screaming “OH MY GOD – WHAT IS HAPPENING TO ME!”
The sequence of events on the days that followed are very, very fuzzy. Because I could not recall any of the events that took place on September 8th 2010, I decided on September 12, 2010 that I would begin to keep a daily journal. I didn’t have the foresight that maybe one day I would memorialize these turn of events in some fashion. I did it simply because I did not want to forget what was happening to me. The inability to recall what happened scares me to this present day. Typically, people will experience triggers that will bring a turn of events into recall but I have not had one trigger to-date.
Another source of fear for me was the fact that I didn’t seem to have the same control of my hands that I previously had. I became a little compulsive about this and each day I wrote my own name on a piece of paper at least twenty (20) times. In my mind, I was certain that any turn for the worse would be indicated in a failure to write my name. Ha! Lets just blame that particular reasoning on the loads if medication that was flowing through my system at the time.
For some reason, I became obsessive about the room numbers of each room I was moved to within the hospital. For some reason, it was important to me at the time to know and remember where I was at a particular point in time. I review my journal notes these days and I am glad that I made the notes that I did. Let me explain why……..
When I was in Room #602 I had a lovely room mate. She was an elderly woman (Ms. Campbell) approximately eighty (80) years old. I probably would not have remembered her had it not been for the journal notes. The thing that I recall about Ms. Campbell was the resolve that she exuded. She was visited by her daughter; a clinical psychologist, who was also very sweet. Ms. Campbell is an example of how women should glide into gracefulness as they age. She was a doll but she was also no pushover. I hope she is doing well. The nurses and aides were very kind….thank you Shannon, Sharon, Mary and Letty for your professionalism and compassion.
Room # 5478 was a private room on the Med/Surgical Floor. I was amazed that I would have a room all to myself. Lady luck was on my side. I welcomed the solitude. Not that I didn’t enjoy the interaction with others but I did not care for the constant activity of having a room mate. That meant double time for the aides/nurses coming in at all hours to take vital signs. Thank you to Vivian, Alice and Mija (charge nurse). You were wonderful
Room # 4544 was also a private room but was located on the Oncology Floor which has a chair that pulls out onto a bed. These rooms are designed for longer stay cancer patients. Suzanne Travis who will forever be called Saint Suzanne by me is, well…. I just don’t have the words to describe this woman. Beyond compassionate, beyond caring, beyond kind, beyond intuitive. From the day that she first walked into my room I felt her kind spirit. I was brought to this floor so that my first Citoxan treatment (a form of chemo-therapy) could be administered.
Here is what I wrote on September 12th and 13th. I told you earlier that my story would not always be pretty. So I forewarn you again, if you don’t care for unpleasantries, then now is the time to turn back. But I hope you read on……….
Sunday, September 12, 2010
- 2:15 p.m. – feeling fluttering in bottom right foot
- 2:30 p.m. – excessive itching on arms – then about hour later itchy on face but not so bad I think this is due to the IV steroid injection
Monday, September 13, 2010
- 12:22 a.m. – took 2 vicoden pills instead of the morphne iv.
- 4:35 a.m. – still no solid bowel movement only liquid mucous – all messy again.
On September 14, 2010, I received a call from my primary care physician. I was a bit surprised that I would get a call from him, simply asking how I was doing and feeling. I wonder what his thoughts were seeing as how I never got another call from him during my stay at the hospital. At 5:35 p.m. I received my first of five plasma transfusions, also known as Plasmapherisis. Jasmine, my daughter, also visited today. I remember that when she walked into the room I felt instantly at peace. I remember thinking that if I didn’t do anything at all in this world that I raised a daughter that is beautiful inside and out. I had that, if nothing else, to be proud of in my life.
What is Plasmapherisis – A blood purification process used to treat a number of autoimmune diseases in which the immune system, which is designed to fight off diseases, begins to attack the body. The attack weapon is the antibodies, therefore in this plasma exchange process, the antibodies are removed (thereby ceasing the attack) and replaced with new. This process is quite intriguing and the clinical definitions that you can find online will provide a much more in-depth definition. Monica and Richard monitored the transfusion process. Thanks Richard for being extra pleasant… you made me laugh and we all know that laughter is the best medicine.
Also written in my journal on September 14th……..
Tuesday, September 14, 2010
- 7:30 p.m. – first bowel movement – i felt relief in my mid-section – it actually felt as if i could bear down on my muscles a tiny bit to push
- 9:30 p.m. – next bowel movement – phew!!!!!! stannnnnnky!!!! poor nursing staff. I was so embarrassed that I actually cried! I feel helpless and hopeless because I can not control a body function that I was never a problem for me previously.
Wednesday, September 15, 2010
- 4:45 a.m. – woke up with bad coughing spasm. could not muster enough strength to bring up phlegm or whatever was blocking me from breathing. Nurse had to hit on me with paddles back to break it up. I ended up sitting up right for the remainder of the morning while typing this entry
THANK YOU GOD FOR STEPPING IN I WAS JUST REALLY FEELING SCARED AND ALONE!!! BUT I FEEL YOUR ARMS AROUND ME NOW…… ITS AMAZING TO FEEL GOD’S COMFORT/PEACE……
On September 16, 2010, several of the gals from work (Gail, Kimberly and Sharon) stopped by to visit on their lunch hour. They happen to arrive while Richard was performing the plasmapherisis. I was sooooooo very happy to see them that tears of joy welled up and spilled out of my eyes! We talked and laughed about everything and nothing just like we always did. It felt like being back at work with my homies. Poor Richard got to listen to our cackling and our girl talk. Ha!
Today, the plasmapherisis was administered differently. FFP, which is short for fresh frozen plasma was added. I am told that this is to assist in the clotting of my blood. I was told that I should be particularly mindful of any itching and to notify the staff immediately should that occur. I didn’t experience anything out of the ordinary other than intense anxiety, a little weakness and an increasing headache. The headache would subside when I lowered the head of the bed a few degrees, however It returned when I raised it again. I only took tylenol for the pain because I did not want to mask any pains that make be linked to another problem. Besides which, I have always hated to take pills. I did not have any pain in my back today as I had in days prior. I was only feeling muscle strain in my shoulders and upper neck.
After the plasmapherisis, I was sent for a CAT scan. And to be honest, I don’t remember why except for the fact that it had to do something with checking my respiratory system.
Mike, Artice, Miya and Vernon came by for a visit. I remember feeling so happy to see them all. As it neared time for them to leave, I remember feeling a sense of despair. This game has kept my mind occupied for many nights when I just didn’t want to think anymore….
Here are my journal entries for the next several days…..
Friday, September 17, 2010
Today is my forth plasmapherisis treatment. Started at 10:10 a.m. Dr Hah says I still have swelling in lower spine. I will continue to get steroid injections after the pheresis treatment.
Per Dr Haj, I will get my next session tomorrow and will rest on Sunday. On Monday, they will consult with a nuerologist to review all tests that have come back in order to come up with a more precise plan of care. The tests that have come back to-date are showing higher levels of Lupus but it is not yet conclusive until other tests are in.
I am being moved to a different room tonite – #5478A
Saturday, September 18, 2010
I have been awake since about 4:00 a.m. I was uncomfortable last night with headache and lower back pressure. Although I really didnt want to take it, I requested a vicodin for both and was finally able to have a degree of comfort. Weekend doctors came in to check on my progress. Dr’s are ordering upper body exercise stuff. Nurses came in and turned me and checked my back for sores. They say my skin looks really good now. They will come bathe me later after the phresis. 10:00 a.m. – They are prepping the phresis machine for me right now. Dr. Haj stopped by to check on my progress. Stated that we will do this today, rest tomorrow and determine if another will be done on Monday, The administering nurse is Monica
Sunday, September 19, 2010
So I thought today was going to be a slow day. I had no procedures scheduled or anything. But boy was I wrong – lol. A man named Jerry dropped by early in the morning to arrange for the Trapeze to go above my bed. Voila! – it was done. Blood draws, breakfast, blood pressure, sugar level testing, insulin shots, lunch…………. Whoa Jack, then its almost noon and finally the laxatives kicked in or should I say out….. Oh lawdy! And just when Auntie Mara, Raymond and Bronson arrived. They had to be sent away for an hour while I was bathed. Seeing them was so great! It felt good to have my “own” loving family all over me. It wasn’t fake or forced – just pure love from their heart. Raymond washed my feet and annointed me with oil and prayed over me. Auntie Mara prayed over me too. We chatted it up and the football game was on and we had to close the door so as not to disturb other patients. Kevin came by again for several hours and hung out. Ralph came by and brought me a caramel macchiato from Starbucks!!! Ohhh, the love!!! – LOL. Gail came over with snacks, crackers, a coke, big smiles and laughter. The hospital “Move Team” came in and switched me from my bed to a chair so that I can sit up and alleviate pressure from my back as per Dr’s Orders. I sat up for several hours and Gail was the biggest blessing to me because she rubbed the sore spots on my back and massaged out a few knots. Mara, Raymond and Bronson, finally hit the road as well as Kevin and Ralph. Gail went to work to finish a report and then Chelsea from work showed up to visit…..Wow! I was shocked! Then Tatiana showed up out of the blue! It was a good day to have people around me that really care. They say its times like these that you find out who is really in your corner!
Monday, September 20, 2010
Today was suppose to be kinda slow but it was anything but slow. The physical therapist came by and did range of motion exercises with me. I sat on side of bed and tried to move my core. She showed me how to make some turns and body movements with the assist of sheets and or towels. After that, an occupational therapist came in and talked to me about moving my hands carefully to avoid swelling and pain. Mike came by at appx 10 a.m. He stepped out while they bathed me. Then I got moved to the cardio chair and sat there for several hours. While in the chair I moved my left foot. Dr Hah says no more plasmaphresis and the central line from my neck can come out. My other two doctors came by and when she was examining me my legs responded to touch with movement. I have some strange new pain in my arm and along side my breasts. I’ve reported it to the nurse and they will report to my drs. They put me on an antibiotic today that didnt sit well with me. It caused nausea and a rash and major shakes
Tuesday, September 21, 2010
I didnt write anything down on the 21st which is not a good idea because i cant even remember stuff – lol. But here are the highlights; I had physical therapy, moved to cardio chair, lunch. Dr. Martinez stopped by to check in. He actually told me that I was an inspiration to him. Wow! Ralph visited and did reflexology on my legs and feet. He also massaged my back. The back massage was a god-send. The knots and sores were worked loose and I was able to have some relief while sitting and laying. It releived pressure points and gave me extreme relief. I didnt sleep well. I was restless and I had weird dreams about Mike Releford being injured in the desert. I also dreamed that I was on a huge Disney stage, but in an amphitheatre setting where my surroundings were so huge and I was soooooo small but even though I was small I was not insignificant. I woke up several times and tried moving.
Wednesday, September 22, 2010
I didn’t sleep well last night. I woke up at appx 5:30 a.m. I read my Bible (Jeremiah) for awhile and then layed back down. I watched the sky change colors through the window until I dozed off again. I pulled it together at about 8:30 a.m. when the blood draw gal arrived. Got up and brushed my teeth, washed my face, put on my blue boots and had breakfast. Dr. Lin stopped by and said she would be by later to remove my central line. They also removed the IV from my left hand but will replace it later when they give me the first citoxan treatment. Dr Lin removed the central line but I didn’t get the citoxan today because my blood cultures had not returned from the lab yet. I had a bowel movement this afternoon at appx 12:45, right when physical therapists were scheduled. PT was pretty grueling. I broke out in a serious sweat but I am not complaining. Dr, Martinez was here while I did the PT. It felt good that he stayed for the session and was actually genuinely interested in my progress. I focused on core stability with the PTs.. Phew! I am excited to really get going to the acute neuro pt. Mike came by this afternoon and I was so happy to see him. I hope he didn’t notice that I was babbling on and got short of breath when he arrived. I had to make myself slow down – lol. He brought over some of my creature comforts – thank goodness. Yunida, Gail and Chelsea came by to visit. Yunida brought me a starbucks caramel macchiato – oooooooh yum! I love those guys! I always laugh so good with their crazy butts! Mike left while they were here but he came back and stayed til it was time to get me cleaned up…… Shirley, the nurse changed my foley tonight. I had a more movement in the legs today. Or should I say the movement was more significant I cant tell if I initiated each move or if it was delayed or if it was simply related to the physical therapy activity. They replaced my foley tonite and it made me realize that I have lost time from when I went to the emergency room. I dont remember them inserting one that night. I am now curious as to what happened that night in full detail.
I am so glad that I kept a journal when I was in the hospital. At the time I did it because I was having trouble remembering the events that took place on any given day. But now that I read back on them, not only do they memorialize this situation, it also provides me with a reminder of how much progress I have made to-date. I had completely forgotten about the fact that I had to be transferred into a cardio-chair just to sit upright. I had completely forgotten that physical therapists came to help me learn how to sit up again. To-date (May 17, 2010) not only am I siting up in bed unassisted but I am turning over from side to side in the middle of the night. There was a time that I could only sleep on my back and if I wanted to turn to either side it was a major production. I had to first get myself into a sitting position, then I had to move my legs with my arms so that I could turn. By the time I was re-situated, I was fully awake and no longer comfortable in the new position! Wow, I have certainly come a very, very long way.
Thursday, September 23, 2010
I’ve been awake since about 4:45 am. I put on my sports bra and it feels great to have my “girl’s” under control instead of flopping all around. It’s 5:55 am and I’ve washed up already. I had the nurse help clean my funky poopy butt and I really tried to detail clean the crevices of my “girly parts”. It was pretty hard to do without this core balance in my torso. Who could imagine that such a simple task could be so very difficult. I feel very very hungry right now! I’m having reservation about taking the citoxan and am contemplating delaying it for a day or two to see how much motor activity I accomplish. I will have to talk to Dr. Lin. Dr. Lin is off rotation and Dr. Indi has replaced her. Delaying the Citoxan will not be any more of less effective. Still needs to be done in order to further dumb down my immune system so I’m just gonna do it. I’m kinda scared about it but the alternative is scarier. Ralph came by today and gave my feet, legs and back a great soothing massage. I can feel circulation increased in my lower legs and feet when he does this. Then crazy Cameron came by to visit. He brought flowers and a piece of See’s Candy. Kimi and Angela came by after work to visit for awhile, I just love those ! Jasmine brought me chicken teriyaki and vegetable tempura – yummmmmm! And then Artice, Vernon and Maya came by. I was so pleasantly surprised to see their lil faces. They all left at appx 9:30 p.m. It was a busy day.
Friday, September 24, 2010
Sandra Diaz is the nurse/caretaker that took such extreme good care of me and talked to me when I felt sad this morning. She was very encouraging and had kind words that showed her compassion toward people. I know it wasnt just me. She is a great lady who gives 110% Her shift ended at 7 am so I wont see her anymore since they are moving me to another room. So I get to leave room 5478A today. I’m sad that I didnt get a picture of Sandra. Ruffina is the day nurse that is also such a sweetheart. I do have her picture. Dr Indi was here at appx 8:30 a.m. He is going to order a special wash and anti bacterial for my mouth. I feel like there is a lawn growing on my tongue. I will probably not have the citoxan until Saturday evening. Mani and pedi is scheduled for 11:30. Melanie got here late but that was ok because the room move kinda thru everything out of whack. Angela, Christie, and Chelsea stopped by at lunch time. For some reason, I got especially emotional while they were here and I cried. I was really trying to hold it in but it came out anyway. Angela anointed my head with oil and led a prayer. They fixed up my room with my flowers and my stuff before they left. Ralph came by and massaged legs and back again today while melanie was here, OMG, Ralph has been a God send. He consulted with the PT lady for future sessions. Kimberly came by to visit with her pretty lil sad face. I can tell she is having a difficult time. I told her this is her time to shine and prove herself. She will be ok! My mac charger seens to be failing so I’m not sure how much more juice I will have to chronicle the remainder of my stay. Guess it might be back to the old pen and paper. Its 9:50 pm. and I still have juice so I figured I write down some thoughts…… Earlier today, I had such a hard time breathing. It was hard to talk and that panicked me a little because I couldn’t understand the cause. Then as I was laying down at about 7:30 it suddenly came to me that my body is much like an infants right now. I have no control over my urine or my bowels and they are moving on their own so what I was feeling was probably some serious gas, much like an infant that cries when they are gassy. Now I know that sounds really simple but it was truly a revelation to me. Anyway, I am in room 4544 now and getting settled in. This room is on a noisier busier side of the hospital. I think there is more construction going on outside. Bigger trucks passing by and backing up. Just as I started to doze off, a truck’s wheel’s shreiked and scared me awake. They had to change out my IV line today because it was all bloody and painful. Ugh!
Saturday, September 25, 2010
Its a bright sunshiney morning. At 5:30 a.m. I made my right leg move two times. I have been working out for about an hour because I cant sleep and am sending memories to my legs. I feel what I can only describe as the muscle burn that one does when they are using work out equipment. Oh yeah, I had a bowel movement at appx 4:30 am They are getting too soft so I’m going to stop with the Miralex because I don’t want diahrrea. That would add the ultimate insult to this injury. I have noticed that my arms have become extremely oversensitive to cold and especially if the source of the cold is something metallic. It feels as if it is stinging my skin. Very painful. I finally fell asleep after exercising but when I woke up it was in a huge panic because my lips felt all tingly and so did my arms. I panicked thinking that this had started all over again. I am feeling anxious about the citoxan again, ugh! The neurologist explained why I was having such hyper sensitivity to the cold on my arms. My brain is not interpreting the sensations properly because of the nerve damage from C___ to T11. They are ordering a medication called nuronton to desensitize this feeling.. Its 3:30 p.m. and they are starting to hydrate me for the Citoxan. The medicine that they give to bind particles from my bladder is a sulpher based med, which I had a reaction to the other night. I have opted to take the med so long as they pre-treat me for any allergic reaction in advance. So they will give me benedryl. Suzanne, my nurse today during the day is incredibly sweet. She has a friend that is a writer who journals. Kevin was here and stayed for quite awhile. They began to hydrate me for the citoxin treatment and I had dinner and drank 3 bottles of water as well, I want to ensure that I don’t have any bladder problems from this process. I’ve been informed that this process does not have instantaneous results but that 5 to 7 days is typical to see the affected changes. Anyway, I was talking to Jasmine tonite and during that conversation I suddenly became very confused. I could not put a sentence together. It was if all the words were stuck in a Jumbo word puzzle in the corner of my brain but I couldn’t put them together to make a sentence that made sense. I thought that this must be what a stroke feels like. I felt panicked. I felt scared that I was talking to Jasmine while this was happening because I didn’t want to scare her. I was able to tell a lie and say that the nurse walked in and needed me and that I would call her later tomorrow. I paged the nurse and Suzanne came in and helped me to calm down. We went thru breathing exercises and she just talked to me and did not stop talking to me. I shared with her that I was scared. She asked me if I had told that to anyone else in my friends or family network. It wasn’t until then that I realized that I have never really had any conversation with anyone whosoever saying exactly what I was feeling about what is happening to me. I guess that this is what my chronicling was to accomplish. It was suppose to be my source of relief. But obviously that is not working. I thank God for Suzanne who came into the room and sat on the bed with me and held my hand and breathed in and out with with me and rubbed my hand until the scary monster under my bed disappeared. Well, one panic attack don’t stop no show around here. The citoxan treatment continued. They administered the benedryl thru my IV to proactively counteract the Mesma, that contains sulfur which I seem to have had an allergic reaction to. I now have an entirely new respect for Benedryl. Holy smokes! It was given to me thru my IV which means that it went directly from the needle into my bloodstream. The last thing that I remember saying is “OMG is this what junkies do to self medicate themselves. Well let me tell you this, I completely understand why. I felt nothing at all afterward and when the lady came to take my blood at about 5:00 a.m. the next day it didnt even seem as if a moment in time had passed. Oh yeah, I had a bowel movement today.
Sunday, September 26, 2010
So the citoxan treatment was done yesterday. I was awakened by the True Blood fangers for a blood draw. I dont know what time it was but it was still dark outside. When the nurse came in to take my vitals and she unknowingly scared the crap out of me. I completely heard her say she was here to take my vitals and I said ok. In the next 5 seconds or less I must have fallen back into a deep sleep because when she called my name again she scared me half to death and I think that I actually scared her. Ha! I gradually began to awaken and the team of doctors all started to check in to see how I was doing and how the process went. I told Dr Indi about the tingling of my lips when I woke up this morning and he said that was a normal reaction. I told him about the muscle twitching and spasms that I has experiencing in my back, biceps and triceps. He stated that this is also an expected action. The nerves are active and are trying to make connections or die off, etc. These are all positive signs. The nurontin is working well at releiving the nerve pain. It is so odd that the touch of metal on my skin was excrutiating. Dr Indi told me that they have secured a bed for me at the UCLA Acute Neuro Rehab location and that I will probably go there on Tuesday once they have finished their observation of me here for the next 24 – 48 hours.
Dr Gordon/Rhumatology came in with her sidekick to check on me and to let me know that this might be the last day that I see her since she will be off work and isn’t scheduled to return until Tuesday or Wednesday.
Kevin came by again today and stayed for several hours. I was so glad to see him again today and that he was here when all the doctors were stopping in. I can tell that he is concerned about me and I hate to see him worry. We talked about next steps and that he wants me to come stay at his house while I work thru my recovery. I guess that he and Dorothy have already had this conversation without me. The funny thing is that I’ve only given this step a brief thought because I cant manage that process at this time, I need to stay a little more in today for the next two weeks. The only decision I have made is that THINGS MUST CHANGE and they must change drastically. My focus is now only on me….. nothing and no one else. I have layed this situation in the hands of God who I have said I believe in all my life. I am standing on solid ground and I’m gonna “rest” in God’s arms and let him guide me.
Kevin left atappx 12:30. I was kinda sad to see him leave. It felt like old times when we use to just hang out and sit around and talk, eat, watch tv or simply do nothing but talk. At 4:15, I was given another Nuerontin (gabapantin). Thank goodness because I can feel that little nerve pain slightly again. I need to remember to ask if this is going to be a long term thing to address. Also, I asked for vicoden to rlieve some of my back pain that Im feeling in my middle back. Loopiness is setting in. It is 5pm and I am doing my leg exercises.
Ralph text me to see if I was ready for my foot and back massage today. OMG…. another heaven sent visitor. He stopped by at appx 6:00 and we talked and he massaged me until about 7 p.m. I really enjoy my conversations with him. We talk about any and everything and on any level. Just being silly and laughing or getting way deep. I am so blessed that I have people exactly like him in my life. He is selfless and I love that quality in people. I have to do something especially special for him once I am fully recovered. We have agreed last week that when I’m walking again that he and all my friends are going to do the Conga Line somewhere that would be totally inappropriate to do it – lol. He also brought me over the blue band for exercising and showed me some core strengthening exercises to do. When he was massaging my back I can feel sensation further down my back than I previously felt before. Also, I can feel further down my right foot than I have felt before.
I tried to sleep but it would not come. I have never been a night person. The darkness has always had a profound affect on my mental being. I asked the nurse for Adavan. I took one half and was able to relax enough to doze off. My brain was trying to go into overdrive and begin planning goals and objective for too far ahead. I must stay in “today” and focus on “me” in today.
Monday, September 27, 2010
I woke up this morning and felt weepy. I cried for about 5 minutes to clear my system of the feelings and them move on. I did not sleep restfully. The nerve pain seemed to flair up throughout the night. The compression boots seem to make me feel too tingly as it gets to be day break.
Maybe I should have them take them off earlier. I am feeling especially tired today. All I want to do is to sleep, however, I have been exercising my legs all mornng. (When I say exercising, I mean that I am trying to move the muscles even though I don’t see the muscles moving I can feel it.) I fell asleep at about noon. I woke up an ordered my lunch at 1:40 p.m. While waiting for lunch I am exercising my diaphragm… pulling in hold then release. My lips are tingling slightly right now as well as in my fingers. I had a hard time eating all of my breakfast and lunch today. I felt slightly nauseated but I ate it just so that I stay full of food and continue to move my bowels. Right now it is 8:45 p.m. and I havent had a BM yet today. Earlier today, the occupational therapist came in and she moved me to the side of the bed so that I could sit up and try to balance my core. It was a very short session with more words of encouragement regarding the level of rehab and training I will receive at the neuro center. Gail and Chelsea came by to see me today when they got off work. I was so glad to see them. Our stupid laughter over nothing is so healing. Girlfriends are so important to have in your corner.
Tuesday, September 28, 2010
Well today is the big day. I get transferred to neuro rehab in Westwood. I am very excited to get started and get on my way. I had a hard time waking up today. I ordered lunch late and just helped the care giver pack up my belongings. I ordered lunch and while waiting for lunch, I began to give praise to God for my situation. It was the instant thing to do when I saw a man walk down the hallway of the Cancer unit. My heart went out to him and his pain and I began to thank God for my life. I thanked God for the breath that I take today and I told God that I dont ask him “Why Me” in this situation but my question for him is Where do we go from here.
I just praised and praised and praised God in the spirit and I began to cry tears of joy. I got so filled with the Holy Spirit, I mean, I felt the Holy Spirit all over me. The Holy Spirit swept thru me and breathed thru me and ran thru my entire body, it overwhelmed me and told me that “All Is OK With You” I felt exhilirated and drained all at the same time. I literally felt the Holy Spirit breathing through and traveling through me. What a gift to experience! What a comfort and confirmation! The gift is that I now know the level of my faith. Whereas before I could only say that I have faith that God will bring me through any and all situations. Now I know. Before I could sing about “what I mighty God I serve” Now I know. I could see the works and miracles in the lives of others, but for myself, Now I know. All I can say is WOW!!!!!
Well, the Holy Spirit left and my lunch arrived just around the same time that the ambulance crew to transfer me to the rehab ctr. They waited a few moments for me to eat and then whisked me away. When they opened the doors to exit through the emergency room, I realized that this was the first time that I had been outside since arriving to the hospital on September 11th. It felt warm and balmy and the sun was like sweet kisses to my skin. I just opened my arms with palms facing up and soaked it all in. Again, I had to thank God for what I felt at this very moment. I will never forget this moment. The ambulance driver giggled at me because of how I had did my arms to feel the sun. I told him that I didnt know about him but for me, right now I was laying on the beach! He laughed!
Well, now I’m here and being checked in and checked out by Dr. Dobkin and Dr. Alexander. Mike arrived a few moments ago. He so frazzled, poor baby! I can see it all over his face. He had to sit down and gather himself. He doesn’t do well trying to find new places in areas that he is not familiar with. He becomes a fish out of water. Its kinda cute to me – lol. Anyway, he is here the entire time that the doctors are assessing me, and prodding and poking and sticking me with pins. He gets to hear all their questions; Who is the president? What day is it? What is the date? Who is the vice president? (got that one wrong – lol), who is the governor? Who is running for governor? (couldn’t remember), etc. He told me to remember three words: green – cat – ball. I remembered it the first time but then he tricked me and asked me again and I only got one without having a hint. I kept looking at Mike as if he were gonna help me cheat or something – lol. Well then the Dr’s gave me a good “once-over” and left. Valentine, the RN came in and began to explain that they are going to remove the catheter and that in place of that they will empty my bladder intermittently during the day to avoid UTI’s. He explained that they will use diapers which instantly freaked me out. Mike instantly saw my reaction and asked Valentine to give us a few moments alone. He came over to me and hugged me and comforted me while I cried just a little bit. He explained the positive side of what they are doing and reemphasized that this is the next step to recovery. I am so glad that he was here at this very moment because his hug was like a safe warm place where I could have stayed for hours and hours. I just wanted to melt into him and never leave his side. So after I regained my composure, nurse Valentine came back in to explain the process. They will do a sonogram of my bladder to see how much liquid has accumulated. I have had the catheter since the 11th and my bladder is not use to doing anything on its own now. This will reverse that situation. Well Mike stayed for awhile longer and we chit chatted about him and his brother and he showed me the finished room photos. Mike said he didn’t really realize until today the seriousness of my condition. I think it was a great thing that he was here during the time that the in-take session happened. He now has the full gravity of my situation. The doctors uncovered my legs in Mike’s sight and I was mortified for him to see me. I know that my legs have gotten skinnier and now the muscles are beginning to atrophy. I was completely mortified and ashamed. I don’t know why because it is not my fault but still it is how I felt. Well, now the cat is completely out of the bag and it is what it is. He left and Valentine and the nurse came in to do the sonogram, empty my bladder and while this happened, I actually pushed out a BM. Ugh, so degrading!
Wednesday, September 29, 2010
Wow… this is a crazy day. I’m reporting in at 9:51 a.m. I have been going nonstop since about 6:00 a.m. Elsie the CNA with a lovely Jamaican accent gave me the best soapiest bath ever! With really hot water. It was the best bath I’ve had in two weeks. Then they cathered me and gave me a suppository. Breakfast arrived at 7:00 a.m.
After breakfast I started to exercise on my own. I moved the toes on my left foot and had slight movement on my right. I need to focus more on my right side in order to equal things out.
Then Meggie, the occupational therapist came and she showed me how to put my pants on, which I did successfully. We then moved to the side of the bed and I balanced myself up for a few moments. I was then moved to a wheelchair to show how the process goes. Meggie said that I did extremely well with my movement and shifting. Unfortunately, I had a bowel movement while I was in the chair and needed to be put back on the bed for changing. After being changed, I was put back in the wheel chair and right now I have a few moments to journal.
I spoke with Shiraz, I went outside in the wheel chair with Ray I spoke with an Admissions Guy, I spoke with a Chaplin, I spoke with a Speech Therapist, and then I had PT with Larona. Larona is tough but I like her a lot.
So today, I achieved moving myself from the bed to the wheelchair with the use of a sliding board, I then moved from the wheel chair to the workout bench. I was shown how to do range of motion on my own but I will not do that tonite because I am afraid that I am going to fatigue my arms if I do much more with my upper body tonight. So instead I will focus on moving my legs and feet and LO AND BEHOLD, I WAS MOVING MY RIGHT FOOT MANY TIMES FROM 7:30 TO 8:00 P.M. I was so excited that I called for Elsie to come into the room and be my witness.
I called Jasmine and my aunt Dorothy to let them know. I wish that I had my video recorder so that everyone can see what I was doing, especially for the neurologist to see exactly. I’ve been exercising off and on and got considerable movement on the right foot from appx 9:30 p.m. to 10:00 p.m. The left foot was not so cooperative although I did get movement, it seemed more involuntary. The sensation that I feel is like that of an electric current moving down my leg. At 10:10, the right foot had more involuntary movement. I was feeling the sensation that I can only describe as “sputtering” in my right foot while this was happening.
I had another emotional episode tonite. This time it was geared toward Mike and the fact that he said he would bring my clothes and toiletries later in the day to avoid traffic but here it is 11:30 pm and he hasnt arrived or answered his phone or his text messages even after I blew up his phone. Yea, its that 11pm hour that is so suspicious to me and has been for quite some time. I cried my heart out because it just feels horrible to be on low priority. I thought I would have meant a little bit more to him but my stay here just proves differently. He arrived at appx 1:00 a.m….. Ugh! Had the nerve to say I was making more of this than it is. Well he can say what he wants and think what he wants but his actions show his real heart. I cant and will not be bothered or concerned about him or this situation anymore. I cried and now I need to focus 100% on my recovery. He was a complete jerk when he was here. Very negative and non supportive. I dont need anyone like that in my corner. Now don’t get me wrong, I am not looking for a pansy person or support group to pamper me. I need stern aggressive and positive reinforcement coupled with truth and honesty which can be delivered to me in a way that is not biting, bitter and full of venom. I fell asleep while he was here and he was gone when I awoke. Im glad about that. Oh yeah, one more important thing to note. I am not doing very well yet with this bladder and bowel control thing. This is going to be my major focus
Thursday, September 30, 2010
While i was praying,praising and thanking God today after physical therapy I finally understand the purpose for being here where I am today. I am in this place to show the power of God’s might. To glorify him in every thing that I say and do. (12:13 p.m.)
The first physical therapy session today was with Larona. I really like her style. She is a toughie and makes me work. I did well today with movement from the chair to the bed and from the chair to the bench. I felt much more comfortable than yesterday. I spoke to Dr. Dorsch and Dr. Alexander this morning before PT with Larona. I told them that I moved my toes last night and asked them questions relative to what type of things/markers can we look for to determine progress. Simple testing is all – there is actually nothing – we are going to see improvement as swelling of the spine goes down. Until that time they are going to continue to make me mobile and independent. OT was interrupted because my bladder needed to be voided. I had time in between my next session so I stayed in the wheel chair and cleaned my room and brushed my teeth again. Ralph came by and was here for my next PT session with Larona. i got to stand up on the rails and off the bench with all of her assistance. she states this will help with circulation and bowel movement. Oh yeah, they started to give me vitamin D today.
Friday, October 1, 2010
I have been up since 5:30 a.m. I’m washed, dressed and ready to go to PT with Larona at 8:00 a.m. They took my blood this morning to check my CBC and my metabolism. I had the suppository this morning at 5:15 a.m., however, it didnt work until the time that Larona came in. I think that my movement while transferring to the chair caused my bowels to move. I think the better strategy is going to be to have the suppository at 5 am and then at 6 am transfer to a commode or have a bed pan and try to void.
During the session with Larona, we worked on my upper body strength, more specifically my triceps. I had to lift myself on the parallel bars while she supported my core. Even when I was at the gym all the time, this was one of the exercises that I was the weakest at. But for the most part I think that I did a decent job but I need a lot more work on this movement. We also rolled over onto my stomach – I am going to have to try that again over the weekend.
Its 9:41 and I’m in the wheel chair still. I just straightened up my room a little bit. Washed my face real real good at the sink and am now just writing. I feel very tired as if I want to go back to sleep but my next OT session is at 11:00 so I can’t. I think that I will get to bed after OT with Meggie to try to take a little nap.
During my OT with Meggie, I worked on core balance while trying to reach out in different directions to touch different things. , extending my arms in different directions all with the purpose of strengthening my core and keeping my balance. She is off for the weekend so she gave me instructions on what to do on Sunday to be prepared for next week. It felt good to do the back exercises. It felt as if the squeezing of those muscles generated blood flow right down my back on either side of my spine.
I wasn’t quite ready when Suzanne came because I felt as if I had to urinate and so Sabina had put a bed pan under me – nothing happened. During my PT session with Suzanne, she did range of motion with me while I was in the bed. She saw that I was able to make my foot move and she also observed that there was muscle activity/connectivity taking place. She stated that this is good.
I had a good bm at appx 4pm. 2 good sized stools per Sabina. I had a little mini melt down between OT & PT when I looked at my bank account and saw the amount of my paycheck and instantly panicked. I began to cry about it just as Shiraz was walking in to give me the letters that are needed by Jasmine and Watt. We talked for about 30 minutes regarding possible options and solutions. I shared with her that part of my reaction has to do with my fear of living back in poverty again. After talking to her I just began to pray and praise God for my life and I cried and prayed in the spirit and I sang the song: “As soon as I stop worrying worrying how the story ends, thats when things start happening…. let go let god…..” and I raised my hands to god to turn it over to him.
Meggie came in and off we went to OT.
Gail and Christie came over tonight at about 7:30 pm. for a visit. It just means so much to me that they continue to visit. I have really come to know who my real “girls” are. Gail gave me a back massage again and it really helped loosen up the knots and muscle tightness from PT earlier today.
Mike came by and brought me more toiletries, socks, different tennis shoes, lotion, etc. We talked and talked until we both fell asleep. It was about 5:00 a.m. when we both woke up. We saw my legs and feet moving and then he told me about how he was doing different things and when he did crunches that he saw his own feet move and he believes that this is an important connection. So I tried it and yes indeed it worked. When I did the crunches there was movement in each leg all the way down to my feet. It felt so good to have him here. It was the first night that I felt as if home was where I was without trying to make this room feel like my home. Anyway, he left and Elsie cleaned me up with a good ole hot wash up and got me dressed and ready for PT. I fell asleep for about 30 minutes right before PT. I had a great deal of muscle twitching around my underarms and breast area. But it went away around 9:00 a.m.
Saturday, October 2, 2010
Physical therapy started this morning at 8:40 a.m. or so with a different team because of the weekend. I worked on building my arm strength and I was put in the standing position to get weight onto my legs. I actually worked out with another lady (Ettie) throwing a ball and catching, while using my abdominals to keep my core strong. I had Occupational therapy afterward and worked on a machine that would help me with my core when I begin to stand up. I played tennis and bowling on the WII machine. All the focus today was on abdominal and core muscle strengthening. Recreational therapy was with Ray. He took me over to the Botanical Gardens which I have actually been to before. I didn’t tell him that because he was so into telling me about the gardens, its history and the groundskeeping. It was such a long walk to the gardens I kinda felt bad that he had to push me all that way- lol. Ray is from the south and was telling me about how they use to catch squirrel, possum and alligator and eat them. He is a pretty animated guy and I was glad about that. As we were on our way back, my friend Kevin from Palm Springs came running up to us. He was all hot and sweaty from trying to find me lol. He had been to the rehab room, and all over the place and then down the other side of the gardens looking. It was so funny. The three of us went back to the room, I had a nurse change me and then Kevin and I visited for the rest of the evening. I showed Kevin how I can move my feet and my toes and he actually let out several sighs of relief. I almost wanted to cry when I heard that because it means that he has been holding in a whole lot of worry about my condition. I felt so good that he could breath a sigh of relief and “know” that I am improving and am really on the road to recovery. My lord, my lord, I am so blessed to have such a true life long friend like Kevin. Over the years, he has never ever failed to be in my corner. Not even once!
He went to the cafeteria across the street to grab some food and we had dinner together. That was kinda nice because it was almost like we had went out to dinner together – lol. I know that is silly but I have to pretend anyway I can to get me through being at this place. Now, don’t get me wrong, this is not a bad place at all. but it is not my first choice of places I’d rather be. (Also, I had a bowel movement today. Lateetra says it was two medium formed stools.) Now I know that describing that seems like a bit much but it is actually important for people in situations such as mine to monitor these things. All I can say is that the truth just aint pretty!!
Sunday, October 3, 2010
Last night I was actually able to maneuver myself to sleep on my stomach. It felt great to take the pressure off of my back.
I woke up at 5:00 a.m. and my bladder felt very full. I paged for the nurse to come cath me. 600 ml were voided. That was quite a bit. Francois suggested that I do not have them put a diaper on me at night in order to reduce further skin irritation.
The muscles in my back are pretty sore from the PT sessions. I could really use a good massage to loosen them up. Where-O-Where is my Gia – lol.
I got a good bath this morning and had breakfast. Dr Alexander stopped in to check on me. Kevin came by at appx 10 a.m. and I can tell that he is in much better spirits.
I began to praise God in the Spirit this afternoon at appx 2:30 p.m. and got so enveloped in the Holy Spirit. I just felt healing happening all over my body. I began to cry the more I felt the Holy Spirit and the more I felt the Holy Spirit I moved my hands over my body – up and down and back and forth – and I began to feel strong tingling radiating in my knees and in my stomach area. I just know that I am being restored because up until now today I have not been able to see any movement unless I was doing the crunches and even then the movement was slight. After praying in the spirit, my legs were moving all around like crazy. Even Lateetra said “girl, look at your legs moving”
So, I have not been out of the bed today and it is 3:40 p.m. But I have been doing more in bed than just laying around. I’ve been working on the exercises that were given to me by the OT. I did take a little snooze earlier just before Kevin arrived. As I was dozing off, I was thinking that I must tell the Dr. that I am getting tired in the middle of the day, but then I realized that I woke up at 5:00 a.m. and had I been at work I probably would have felt the very same way. I actually worked on some of the photos that I took yesterday and uploaded them to Flickr. There is a maintenance man that works here that is very much into macro photography. He said he is going to bring some of his stuff over for me to see.
The patient in the room next to me is screaming loud at the nurses from his room. Lateetra said that if no one answers the call light instantly when he rings it that he yells out for help and that he is very difficult and that even his wife doesnt come up here to visit him as much anymore. I feel bad for the dude because he is really just looking for attention but he is going about it the wrong way. And it must be super lonely up here if no one comes to visit. So there again, I am so thankful and so blessed that I have great friends and family supporting me through this situation. Thank GOD, thank GOD! Even as I type, Kimberly is on her way over to visit……. yeah! She brought me a bag of Lay’s potato chips. Yum. We chatted and laughed for quite a long time and caught up on everything from the office to Kehlani’s birthday party to me praying in the spirit. She got to see my legs and feet move and we giggled about everything and nothing. She left at about 7:20 p.m.
They catthed me at at 6:45 pm and cleaned me up for the night. I slept on my stomach last night and it felt so much better as far as comfort goes. Internally, it felt weird as if my heart were beating faster. I just layed there quiet and still and I fell asleep and slept well. It was about 4:45 am when I woke up because the air mattress alarm went off. The stupid mattress deflated again. (I did have a BM this morning.)
Monday, October 4, 2010
I woke up this morning at appx. 4:45. because of the air mattress alarm. I felt as if I had to go pee and paged the nurse for a bed pan, but there was nothing in the bed pan. I think it all came out when I changed positions from sleeping on my stomach. I had my OT and PT sessions this morning and they went ok. But I am super frustrated with nursing staff right now because they are all behind schedule which means that I am behind schedule with my bladder and bowel training. If there is no consistency, then this will be harder to accomplish. I was suppose to be cathed at 11:45 a.m. but that didn’t happen. It is 12:30 and I haven’t even had my lunch served to me! I have a PT session at 1pm with Larona. We went into the gym and she put me in this contraption that would stand me up.
I got really dizzy, my ears started to ring and I got so dizzy so she had to lower me. We tried it a second time and I was fine so I stayed standing up for 10 minutes. This will help maintain the bone density in my legs, as well as my circulation. Then I had OT with Meggie. We talked about using the portable potty and we tried transitioning from the bed to the pot and back. Today, they will lower my dose of steroids (prednazone) from 60 to 40.This is something that I am glad about because they are beginning to affect my moods. I was so weepy today and everything bothered me to the point that I wanted to be mean and yell at someone. I didn’t realize it during the course of the day but as I sit here right now at 9pm I realize that I was having major mood swings and I was getting overwhelmed by the big picture goals ahead of me. I need to continue to fragment my recovery into manageable pieces. Ok, on a stupid side note, I just have to say that this situation has done great things for my feet. I was sitting here lotioning my feet and noticed that the top layer of the corn on my foot was just about ready to fall off….OMG LOL… my ocd kicked in and I went to work on all my toes on each foot. Is this what it takes to have nice feet. Just sit on your butt for three weeks without shoes on and then pick your feet free…. NASTY!!!!!!!!!! But True! I talked to Jasmine tonite and told her about how bad I felt today. I am taking Saint Suzanne’s advice and sharing my thoughts and feelings with someone in order to prevent emotions from building up and then have them become unmanageable. At first I was hesitant to tell her things becuase I wanted to protect her form having to worry about me but now I see this differently. She needs to see how her mother handles potential tragedy in real life. Jasmine has had great feedback to me when we talked tonite. She makes me proud! The new air mattress that they ordered today is not inflating – Ugh! Its 9:15 p.m and they havent brought my meds yet. So frustrating!
Tuesday, October 5, 2010.
This is my one week anniversary here at NRRU. Occupational Therapy at 8 am – Shower with Meggie. THANK YOU JESUS! This shower made all the difference in the entire world. I got to wash myself with HOT water all over.
Next was Therapeutic Therapy with Ray. We went outside and maneuvered up an incline and over different surfaces in the wheelchair. Going up hill was a little tough but once I get stronger I am sure that I can do it without much trouble. What scares me is the decline. I’m intimidated by gaining momentum and losing control and rolling out into traffic like on those stupid B-Movie comedies. I should be worried about losing control on the incline and rolling backwards out of control – lol – but Ray showed me how to apply the brake in such an instance. Hmmmmmm.
Occupational Therapy with Meggie again. My cousin Chris arrived for a visit just as this session was about to begin so he sat thru the session with me while I worked on core strength. I had to use that machine that actually works/strengthens my triceps and my abdominals at the same time.
I then had PT with Larona (who I just love!) We worked on transitioning from one surface to another with a focus on “lifting” my body instead of dragging and/or shifting. And just as I was getting settled into the wheel chair, Mike came in (yeah).
They changed my room today to 107. It is a shared room with a lady named Patrice; nickname NeNe, How funny that her nickname is my sisters nickname as a child. She has an affliction that has paralyzed her from the neck down.
Dr. Dorsch stopped by to tell me that they anticipate my discharge date to be in two to three weeks and that my insurance company has given approval.
Wednesday, October 6, 2010
I woke up at 3:30 a.m. and my diaper was soaked. I had a suppository at 6:00 a.m. It is 6:50 and I am beginning to feel some rumblings in my stomach. I woke up sad this morning and I know it is because of Mike. Gonna shake it off and focus on me. I am feeling more of the tingling further down along my back and down my left leg today as well as last night. It is very uncomfortable and hurts my skin to have my shirt on.
In PT with Larona, we practiced transferring to the commode. In my second session with her I practiced getting onto the mat and then she stood me up in the machine. I was in it at first for appx 5 minutes before getting dizzy then the second time I was in it for appx 25 minutes. In my first session with Meggie, we worked on lifting and tucking as I move. Second session with her was working at controlling my core movements. I finally noticed that I have different “centers” for moving different areas. This realization will help me to maneuver my torso and arms simultaneously. We practiced this.
Mike, Maya and Artice visited at appx 430 p.m. They waited while I was in a group session. The session consisted of prior patients who have successfully worked this rehab program and are now functioning again, This was very inspiring and the central message is that recovery will take time but we have to work at it every single day! There will be hard times, angry times, crying times and it will be ok but still work at it every day.
Thursday, October 7, 2010
Its 6:30 a.m and we don’t have our schedules yet. Elsie just gave me a great hot bath and I’m not gettting dressed yet. Just a robe this morning because I’m going to try to go to the commode this morning. During the transfer to the commode, I noticed that I had already had a BM on the bed, so I was rushing to the commode. Lateetra and Francois helped me because I wanted to get on it quicker. I was sitting there and pushing and suddenly I began to feel weird and my ears started to ring. My blood pressure had dropped to 70. Francois and Lateetra immediately put me back on the bed and raised the foot rest to bring my pressure back to normal. Ugh! This whole mishap made me a little late for my first PT with Larona.
In the gym with Larona, we worked on transfer and I did the Mad Cat exercise. In the afternoon with Meggie, I did core strengthening exercies. My mid day was occupied with a wheelchair evaluation. Chairs start out at $2,100 base models. Good lawd! My insurance will cover up to $5,000. But I have to consider what other medical equipment I will need for home. I am also going to have to schedule an appt for them to go to the apartment to measure the apt. Hmmmmm.
Jasmine came by and brought me an In & Out Burger – ohhhhhh lawdy – it tasted like a bit of heaven! She also brought me 4 new outfits in comfortable sizes with softer material. Thank god for daughters who are OCD like their moms – lol – they know exactly what mommy needs.
Friday, October 8, 2010
I am being cathed more frequently to eliminate voiding on myself during pt sessions. I looked at my schedule this morning and I have a pretty heavy day. Starting at 9:30 I have PT then OT then OT then PTA then last Pt at 3:15 pm. I was cathed at 6:00 am and at the same time I had the suppository. I got right on the commode 15 minutes later after they removed the cath. I had a BM at 6:25 am. It was a great deal more than I have had previously. I wonder if it had to do with having a cup of prune juice yesterday when Jasmine was here. This morning Suzanne and I worked on transfers from the bed to wheelchair to commode and different variations thereof. We discovered that transferring from my left side is easier due to the fact that I have better flexion on my left wrist. This is a great improvement! In Ot with Meggie I worked again with core strengthening exercises and transfers.
Ralph arrived while I was with Meggie and he got to see me do the transfer to the commode and also raise myself off the commode so that whoever is assisting me try to help me with pant removal and pull up. Ralph was here to see my PTA session with Larona. We went to the gym and I used the standing contraption to stand up. I did get dizzy again on the first run but I was up longer in the machine before that actually happened. My recovery from that dizzy spell was shorter. On the second go round I was in there for about 15 minutes. My last Pt was with Suzanne, we didnt really do exercises as normal. We focused on changing out my wheelchair to a smaller chair and better/different fitting parts. Hmmmm.
OK on a side note – as I’m typing here, I notice that my nails look like crap…I may have to just rip these off as they grow. I think that all the vitamins that they are giving me are making my nails grow faster. Next side note – my laptop charger is filthy and it is driving me crazy – lol – all my ocd-dom is so obvious – lol. But really “clean” should be excluded from OCD-Dom.
I feel really good today – and by that I mean more confident in my ability to manuever around outside of this facility. I have 2-3 weeks to go here and I know that the strides that I will make in that time will only make me more confident and sure of myself. I definitely have created a comfort zone here that I will have to tear down starting right now. I am focusing on building up my upper body strength so that I can face whatever comes my way when I leave this building! When I first arrived here and was assessed by Dr Alexander and Dr Dorsh, they tested my reflex reaction and there was no response BUT TODAY – I SAID TODAY – when they tested it, there was response!!!!!! This is good news. Ok, now it is about 7:30 p.m. and I am in bed trying to move my legs. I attempt to isolate the movement to thighs, or knees, or calves or feet. I am getting movement in the direction that I am directing them. I called Jasmine to tell her because I felt like screaming with Joy, but Patrice was sleep. Shortly after, Hattie came in and I showed her. Then Suzanne came in and I showed her and she asked me to do several different things (push down while her hand was under my knee) (push up while her hand was under my thigh). She said this is good news.
Saturday, October 9, 2010
I was up early and ready to go. I had PT with Arman, which didnt go well at all. While we were doing reaching exercises I got really dizzy and had to lay down with my feet elevated in order to recover from the dizziness and the ringing in my right ear. Ugh! He did show me stretching exercises to engage my shoulders and back. I will need to practice stretching shoulders, arms out front with fingers entwined, then go side to side then up overhead Gonna get back into bed and ask to be changed and then I will pay bills after reading my bible. Second failure of the day is that I could not get back into bed. The chair moved and I had to have help because the nurse Angela could not assist me and I almost fell. The guys had to come recover me and place me in the bed. Ugh! I feel like crying but I wont. The devil is a liar – I can do the transfers and I do not need a board!
I have pain in my upper back that I told Dr Dorsch about when he visited. He got reflex reaction when examining my legs. He also got to see me move my knee outward. I got my first dost of oxybutynin (aka ditropan) today. I am not so sure that I want to take this medicine because it diminishes the ability of the bladder to contract. It like a muscle relaxer. Hmmmm? I will look it up right now…. be right back. OK in simple words, it relaxes the bladder muscles to prevent frequent urination.
I’ve been in the wheelchair now since 2:30 and it is now 3:49 p.m. Its 4:30 and I’m still in the chair. I think I will get back in bed now. Ok, Im back in the bed now at 4:50 p.m. and my transition was beautiful. I took tylenol for the pain in my upper back at appx 6pm but it is not helping so I requested a vicoden at 6:30. Angela, the RN cathed me at appx 6:15 pm. She also took a urine sample to send out for testing to see if I have an UTI. At appx 6:30 I began to have strong involuntary movement in my right leg. I used that opportunity to try to direct those impulses the way I wanted them to go. And this is proving successful. I’ve been able to direct the movement in the direction that I want it to go. It is not 100 percent successful. The new movement is trying to move my shins upward. This was successful tonite. It is now 7:10 pm and I am still having results with moving. Its about 9:30 pm and I’m waiting to be cathed and have the suppository. I can hear my tummy making noises. Its time to have a bowel movement. I have not had one yet today. The vicoden finally kicked in and my back pain is subsiding. They started my Colace back up (stool softener). So, I moved to the commode without incident and sat there for about 20 minutes and nothing happened. I thought it was because Francois had removed a good deal when he placed the suppository. But lo and behold! When I transferred back to the bed, I passed some stools but they landed on the floor. (Good Heaven! – UGH!!) It made me laugh because my first thought was “where’s the puppy that crapped on the floor” I said to Rhoda and Francois, where’s the puppy at that did this! They both laughed and Rhoda said I was the puppy. Francois was relieved that I made a joke because the last time that I visibly crapped the top of my bedding, I burst out crying from humiliation.
Sunday, October 10, 2010
I was cathed at 6:00 am. I also started my period this morning. It is still on schedule – lol – this entire ordeal didnt even interrupt my menstrual cycle even after the medication. Ok, ok. The menstrual cycle was a false alarm. During my second cath, it became evident that it was the betadine that was used during the first cath. OOpsie.
I got into the shower today and did my transfers without any problem whatsoever. I washed my hair and when I got back into bed I lotioned myself really good and then dressed myself in the pretty green outfit that Jasmine bought me this week. I felt refreshed! Once I finished grooming myself, I sat here and read thru the wheelchair brochures. Then I paid bills. I spoke with cousin Curtis today and he confirmed that dad’s side of family has no such history of this type of illness. I gave him the lo-down on what happened and then I promised to stay in touch with status reports. Just as I was hanging up with him Erika walked thru the door. I had completely forgotten that she said she was coming up here today. It was so good to see her. It has been a long time.
We talked about her budding career and everything else. Dorothy, Bronson and Mara arrived shortly thereafter and I hopped in my wheelchair and we rolled out down Westwood Blvd to In & Out Burger, then to the Coffee Bean and Tea Leaf. Bronson tried to throw me out of the wheelchair when we were at the curb and trying to get on the sidewalk. My back has been hurting today. I’ve taken one vicoden this morning and I took another this evening at about 10:00 p.m.
Its 10:45 pm right now and Mike was suppose to bring me the mail but instead all he is bringing is drama about having male nurses help me. He is truly crazy…. telling me that when he was in the hospital that no female nurse helped him…. OMG!! if I recall correctly he could walk to the bathroom all on his own. Oh well, let it go. I cant let him stress me out.
Monday, October 11, 2010
The day started off with PT with Larona. We worked on wheelchair transfers and the need for me to lift myself better when transferring. The key is going to be foot placement and leaning forward and then we worked on range of motion on the bench. Next is OT with Meggie. While I was in OT with Meggie, Dr. Dobkin who was a founder of this facility came in to visit with me and check me along with Dr Dorsch and Dr. (Lady). Mike came here while they were cathing me. The nurse (Inya) told him to hang on and he said hey, I’m her husband! you guys need to quit telling me that! Awwww, my heart just melted. That is what I wanted him to do. To take a stand on his own and not have me do it for him. He stayed thru two of my sessions = one where I was doing transfers and the other where I was in the standing machine with Suzanne. Suzanne wrapped my legs this time to protect the blood vessels in my legs while standing, This seemed to make a great deal of difference with my blood pressure when going up in the machine. I did not get the dizzying effects and didnt have to be lowered. I stayed up for appx 25 minutes straight. Mike and I went to get food from Cafe Med. I felt so happy when he was here. He busted me looking at him with goo-goo eyes – lol. He ate his food and talked to Porsche while I went to my session with Larona – we transferred onto the shower bench in preparation for my OT session with Meggie in which I will really be using it to take a shower. He left and I just did nothing for the rest of the nite. I did have a crying spell and I called Dorothy just to vent. It was not a pity party. I dont know what it was, I just felt very sad and I just really wanted to go home and be in my familiar environment, however, maybe the point of it all is to NOT go back to the familiar but to start anew and different and in right standing. Ohhhh how to be pulled out of a comfort zone. It wasnt so comfortable anyway!
I had a very good BM tonite in the commode. I did leave a little trail on the bed but the commode was very full. Working the bowel program at night seems to be working out very well. The only thing I need to work on is the transfer back to a higher surface. Elsie and Celsa helped me back to the bed more than I would have liked them to but I was tired and didnt want to take any chances. The bed seemed to be a challenge to get back onto. Well, now during the day, my bladder is not cooperating. I need to talk to the dr’s to fully understand what is happening.
Tuesday, October 12, 2010
Its appx 3:30 a.m. and I woke up because I felt as if I were urinating. Sure enough I was wet. I am also seeing alot of involuntary movement in my right leg at this time.
I had OT this morning with Meggie and we did a transfer to the shower bench. I fell backwards when I was transferring back to the chair. I felt really unstable once I was wet and soapy. I have to remember placement. I then had PT with Larona and we worked on “lifting” when transferring by using the parallel bars to strengthen my arms more. During my PT with Suzanne, we were going to do the standing machine, however, I had a urinary accident at appx 11:15 so I had to go get changed and cathed. During my session with Larona, I worked on core strengtheing.
Dr. Dorsch stopped by to say that he wants to restart the medicine for my bladder tonite so that I dont have so much leakage. Also, Carla, the Nurse Practicioner came in to say that they want me to have an ultrasound of bladder because I should not have the type of leakage that I am having.
Shiraz came in and told me that my discharge date is going to be a week from tomorrow, which is October 20, 2010. That is the day that Porsche is suppose to come home.
I need to jump all over getting this wheelchair and connecting with Maria. I called Maria again and she is out sick. I spoke to Raul who said that they don’t have any other units available except one that is on the third floor.
I did my own cathing today at 3:30 and 6:30 p.m. Angela and Doreth taught me how to do it. I really didnt want to learn but I figure I have to in case my bladder doesn’t kick in. Thank goodness for the anatomical placement that I have because my urethra is right in front and easy to locate.
Wednesday, October 13, 2010
Well, I have been awake since about 5:30 a.m. I tried to do the cath today but was not successful. I need a proper mirror to do this correctly. Anyway, they drained me, and only got about 250. This is too hard to track.
I had PT with Larona at 8:15 a.m. and we worked on getting my leg up on the bed – the key to this is getting one leg completely up first and because I am flexible, then reach for the second and pull it up. We also worked on strengthening my core by doing the mad cat position and me resisting her pushing me in either direction. My next session is at 11:00 wilth Meggie. It is now 9:40 a.m.
I went over to Ronald Reagan by ambulance to get my bladder scanned and when I was there, I passed out sleep and didn’t even realize it. I do not want this medicine anymore. When I got back, Dr Dorsch, Dr. Dobnik and Carla, came in and I told them that I do not want it any longer. They discontinued it. The results of the scan showed that the fibroids are getting in the way. They will have an Ob-GYN come over for a consult tomorrow and they will formulate a plan to address how to handle.
My next session with Meggie was to show me how to get from the chair directly to the commode if it is placed over the toilet. It was ok. Practice will make this less intimidating like all the other things I’ve had to do. I have to admit that I am getting a little overwhelmed. Then I had Larona again which was interrupted by the delivery of the sample wheel chair. Meggie’s session worked on me getting better balance. Last session with Ray was to go outside and maneuver in the wheelchair up and down the incline/decline.
Tonight at appx. 8:30 p.m. I was able to move my left leg from the knee up to the thigh many times. I moved it so much that the muscle felt very tight afterward so I then massaged it til it felt better. I massaged both of my entire legs again tonight as I do every night. I believe that touch and stimulation have a great deal to do with my healing.
Thursday, October 14, 2010
PTA was suppose to start at 8:30 a.m. and I am ready to go. Mike is suppose to be here to go thru caregiver training with me. Naturally he is late (lol) – it is 8:40 a.m. Well, late is not the word (not so funny now). Its 9:20 a.m. and he didn’t even show up! He text me… didn’t even call me – he text me at 9:28 a.m. and said he just woke up. That was enough to show me that he is not reliable enough to help me thru this transition. I need someone I can count on, so I text him back and asked him to clear out before I get home. My text message was not very nice but I don’t really care. I am so hurt and so embarrassed. But better to really know now rather than later, how it would be depending on him. I will make other arrangements for care that I know I can count on. I can’t be bothered with the stress of wondering how I am going to survive going forward.
Anyway, the scan of my bladder yesterday showed that the fibroids on my uterus is interfering with the proper operation of my bladder. I am waiting for the OBGyn to come in for a consult and figure out where we go from here. I feel much better today. The Urologist came in instead of the GYN. Dr Bird. He cathed me and was able to see the problem for himself that my bladder is not draining properly. He was puzzled as to why and stated that he would refer the matter to Dr Kim, his counterpart who is the female specialist. Additionally, he wants to look at my ct-scan that was ordered by Dr Grossman, which showed the fibroid tumors. He seems to believe that the fibroids may be blocking the bladder from draining properly. Shortly thereafter, Dr Peng and Fitzgerald (last day of rotation – Dr Braun will replace) came in and stated that they are waiting on test results to see why there is blood in my urine, also the next Citoxan treatment will be delayed until bladder issue is cleared up. They will also look at the CT scan previously done. Dr. Dorsch came in and said that we need to solve this and that I can not be sent home until it is because there is a possibility that the bladder can back up into the kidneys and that could cause problems with the kidney. So basically, a closer look needs to be done and possibly another scan of some sort and then we can come up with a plan of action. I feel so exhausted today. I went to sleep right after eating dinner.
Friday, October 15, 2010
I have been awake since 5:00 a.m. I originally woke up at 3:30 and realized that I was wet and I pushed the button to be changed but no one came for awhile. It took them an hour to send a female nurse because they were all on break. I took off my diaper and threw it on the floor!!! I know that wasn’t right and really served no purpose but it was better to throw it on the floor out of frustration than to throw it at the first nurse to walk through the door. I buzzed them three times for Patrice at 4:23 and whoever is at the front desk just turned it off without responding. I was pissed and yelled at him and told him that it is unacceptable for him to not respond when I push the button. I am going to complain to Dr. Alexander later today. I told Monica today about the problem with the night staff. Mike was here and asked for the complaint to be put in writing and for Monica to sign off that she received it. She said there was no form. I will email it to her. Mike showed up just before my first PT at 9:30 a.m. He brought me over new sweat pants, sports bras and tee shirts. He also brought the razors and shaving cream back over and he also brought the sports gloves. I changed clothes very quickly out of my pjs and shirt that I had on yesterday an into something new. It felt good to be clean with new clothes on. He stayed thru the session and got some caretaker training and left at noon when lunch was served.
I had 4 more sessions in which I worked on transfers and upper body strength as well as core balance. Dr. Dorsch and Dobkin want me to try Baclofen to try to control my bladder spasms. This one will not give me the same sleepy side effects. The gynocologist states that the fibroids do not seem to be the cause of the bladder retention. I cathed myself today two times without a problem. Phil gave me a A- on the first one and an A on the second.
Caregiver training is scheduled for Monday between 10:30 and 2:30 with Mike. He has a 3:15 Dr’s appt so he has to leave a little early to get there on time. After therapy I got into bed and had dinner, cathed myself, did a little kitty-cleaning, did a skin check of my legs, massaged my legs, and here I am journaling. It is 8:00 pm and I am exhausted.
Strange symptom: I had the tingling sensation behind my eyes tonight while I was reading. It seemed to start as a spasm in my upper back and moved upward. I’ve not felt this before
Saturday, October 16, 2010
Today I was not able to wake up. I fell back to sleep after being awake in the wee hours. I woke up at 9:15 a.m. and was late for my RT with Ray. I had to get dressed and get cathed before I could go out with him so needless to say, I missed my session with him. I went back to sleep until lunch and then I got up and ready for my PT at 3pm.
In the interim, I had to find something to keep myself awake. I got into the chair and went down to the gym and did karaoke with Kevin, Patrice, and the new gal; Christie. While I was in there, Kevin showed up to visit. I was so surprised. I forget he told me he was coming out this weekend.
Strange symptoms: It is 10:15 a.m. right now while I am writing and just writing here is making me feel a little light headed. My lips are tingling. Gonna stop now. Its 12:53 and I’m lactating again.
Sunday, October 17, 2010
Today is a free day. Kevin came by before he was on his way back home to Palm Springs. Then shortly thereafter, Dorothy, Bronson, Grandma and grandma’s friend Carmen came to visit. We sat and chatted in the family room for awhile then we went outside and walked, wheeled our way to In & Out Burger. They had to leave before Jasmine got here and she was so upset and cried because she missed seeing grandma. I was so sad to see grandma leave. I buried myself in her bosom while she hugged and prayed over me. I just let the tears flow from my eyes because this is the loving comfort that felt so true and motherly. It was the hug and love that I would have gotten from Pearl if she were still here. She would have hugged me like this and not let go. Anyway, they left. Kimberly and Angela were here also when Jasmine was here and we were all having such great laughter that one of the nurses stuck her head in and said that we must be having a lot of fun. I guess we were kinda loud – lol.
Monday, October 18, 2010
This morning, a care partner named Agnes came in to clean me up before breakfast. She was a dark skinned lady with an African accent. As she began to wash my legs she asked me if I had the ability to move them. I told her no and she began to tell me that when she came into the room she wanted to say something to Patrice and I but she was holding her tongue because it was against hospital policy to say certain things to patients. She said she could no longer hold her tongue becuase she had to be obedient to what the Holy Spirit was telling her.
She shared a story about her life when, twenty years ago, she was unable to move due to a surgery she had on her back and somewhere on her front. She was unable to do anything at all and that even when she got her menstrual cycle, her husband had to clean her up. Her family would leave her behind when they went to church but then she insisted on going. She didnt care if they had to roll up up to the front and lay her on the ground in front of the alter. She didn’t care, she just wanted to go. Her family carted her to church and on occasion she began to clap her hands, and then she began to get up and dance all over the church. She told us how when she use to hear people give their testimony she use to think “liar” after they had shared their story until this happened to her and she was able to share her own testimony. She touched my legs and lifted them and told me that I would walk again and that my testimony would someday help someone else. While she was sharing her story I got all teary eyed but they were joyful tears.
Anyway, at 9:15, I had PT with Larona and we worked on getting onto the bench and getting my legs in the proper position in order for me to get onto my side and onto my stomach. For my stomach, cross my feet at the ankles and then just turn over.
Mike arrived for caregiver training and we worked with Meggie on transfers onto the commode and the shower bench. The ATG wheelchair guy arrived and explained his chair. He will bring a loaner chair for me to try.
Ralph arrived for a visit with me while the wheel chair guy was talking. He stayed thru my next training session, which was interrupted by a bladder leakage incident.
At 10:15 pm they came to get me to do the MRI across the street. I got back at 11:45 p.m. and then I could not fall back to sleep until appx 2:30 a.m.
Tuesday, October 19, 2010
Lots of urine in the wee hours of the morning. I paged the nurse and I guess they only changed the diaper and not the pad or the bedding so I was sleeping on wet sheets and pads and could not even tell because I can’t feel anything. The nurse I had was a floater and I just dont know about this night shift. They are a little careless and lazy. Elsie was my care partner but I never even saw her this morning to get washed up. Didnt even get a facecloth to wash my face. It was already past 7:00 a.m. when Maria came rushing in and around trying to get us caught up for the day’s activities. Bedding not changed when the floater nurse cathed me early morning.
Went for bladder scan at 1:00 p.m. Came back and fell asleep. Neither the doctors nor the therapists woke me up until the Rhumatolagy team came in and told me that we are still on schedule for the Citoxan treatment on the 25th because the bladder scan came back showing that nothing was wrong. The fibroids are not causing any problem.
Dr. Dorsch came by and said that the MRI showed nothing was wrong with the pituitary glands (lactating problem) so therefore the lactating is strictly related to the spinal cord injury. Also, they did a pregnancy test which came back negative (I could have told them that!). Dr. Dorsch said that they have extended my stay for another week due to the bladder issue. They are going to start me on another medication (they already tried oxybuti?? and baclofen – which did not work in suppressing my bladder contractions and incontinence. I’ve agreed to take the medication because the alternative is to start cathing every 2-3 hours and that is just too much trouble. I didnt get to go to TR with Ray. He came by the room and didnt wake me up. Hmmm – lol. He is gonna talk smack tomorrow – lol. Started Detrol (2mg) tonite for bladder.
Gail and Alex came by for a visit. They brought me a coke and chips and jelly bellys. OMG… that coke was orgasmic! lol
Wednesday, October 20, 2010
Mike arrived for our training session with Meggie at 1: with00 a.m. This was a productive session because we, well not we but Mike, figured out that the commode will not work in my master bedroom. So we will need to work with a bedside commode for now.
Larona arrived at 1:00 p.m. to go over transferring into the car with Mike, however it was raining so we didnt do it, but scheduled to do it at 1:30 p.m. on Thursday. Mike left. I finished my session with Larona doing stretching and turing over to my stomach. My last session was in the standing frame with Ray.
I went to the group meeting at 4:30 where the prior patients of NRRU came to discuss their experience and recovery. Kevin kinda took the floor at this meeting and shared his story. He has been here for 9 months. He has had two heart transplants, a kidney transplant and a portion of his stomach removed. Wow! I can understand why he is so frustrated all the time.
ATG was suppose to bring the sample chair for me to see at 5:00 p.m. but didnt show up so by 6:00 p.m. I fell asleep. I had to wake up to cath every 4 hours – Ugh! I cant seem to get any contiguous sleep.
Thursday, October 21, 2010
Ok, so I was up at 6:30 a.m to cath, then it was time for breakfast, then I took a shower, then off to therapy at 8:30 a.m. with Breanne. She stretched me as I lay in the bed while waiting for the wheelchair guy to arrive. Martin brought the chair over. He said that the chair height will be 23.75 inches.
In my afternoon session with Meggie, we raised the bed to 26 inches and I tried to transfer with the slide board and was sloppily successful. I tried it a second time while Meggie braced my knees and I was able to get up onto the bed. Yeahhhh! It was hard but it is conquerable with practice. Meggie and I will focus on that tomorrow.
In the session before with Larona, I was in the standing frame while Mike, Artice and Vernon sat in and we all talked. They went to get food from the cafe and I went back to my room. Mike and Vernon ate and we all chatted for awhile before they had to leave to further prepare for Porsche’s arrival.
It is a good day for me. I feel good in my spirit and I feel at peace. I spoke with Pastor Patrice today when he stopped by. He shared his story with me about his daughter who is also named Letitia who he did not know about until she was ten years old because he ran into an old college girlfriend who had withheld the information from him. It sounded like a Lifetime TV movie. I was telling Pastor that I once read a verse in the bible that says “be still and know that I am God” and remembering that when I read it I thought, wow, that is so profound but I never thought much more about it. But that now, that verse means everything thing to me. During my healing, that is exactly what I am doing. I have to be still and watch what God can really do! He is a mighty, mighty God indeed. My intimate faith in God has been re-born out of this situation.
Movement: at appx 6:30 p.m, my left foot began to move repeatedly and quite a bit. I was able to move my toes on both feet upon command and yelled for Grace to come see. When I did, Dr. Dorsh was in the hallway and he came in also and saw that I was moving them on command. I am soooooo glad that he finally got to see this evening movement so that he would know that I was not exaggerating.
Friday, October 22, 2010
I was up at 6:00 a.m to cath myself and I just hate having to do this and being awakened out of my sleep. But oh well, it has to be done. This morning, I felt as if I needed to have a bowel movement at appx 7:30 a.m., then at 8:00 a.m. in my OT session with Meggie, I used the medicated suppository when I got onto the commode and when I inserted it I could feel bowels ready to come out. ( I know it may seem gross for some to read about this account but I really feel like I need to be honest about my experience for those of you who may be reading this and going thru similar scenarios. You are not alone in this journey…others have gone before you and we are surviving just as you will.)
The transfer was not so great at the higher height but it will get better with practice. When I was up early this morning, I looked at my toes again to see if they would still move on command or to see if if was just a sporadic movement. And yes, they moved again. During my session with Beanne, Dr. Dorsch and Clair came in and I showed him my toe movement and he said that this shows that inflammation is going down on S1. He said: “This made my day!” In my last session with Meggie at 1:30 p.m. we worked on transferring to the height of 26 inches in the gym. It was not easy, but I did it even though I did it sloppily. This will take some practice but I can do it with a little more strengthening of my triceps.
Saturday, October 23, 2010
Today, therapy consisted of a session with Arman, we worked on upper body strength using my triceps. When lifting, keep thumbs closed and breath in on the lift while keeping my head lifted.
Dr. Dorsch, examined me today and checked my reflexes, along with having me try to move my knees in and out and in again. He didnt say much of anything.
My next session was in the afternoon with Ray. We went outside and practiced the ramps on the side of the building entrance and then down the block to the Geffen Theatre. It was an exercise in how to maneuver on ramps and inside a theatre on different surfaces and how to use public restrooms. We actually got back later than we should have and I was late for my next PT with Nancy. We worked on core balance by hitting balloons and balls.
All sessions were over at about 3:30 p.m. and I was just chillin in the room when Kevin walked in. I was surprised especially because I told him not to come out this weekend. Shortly thereafter, Ralph stopped by and caught up with us, including Patrice, out in the front of the building sitting and talking in the sun. It felt so good to be outside and just have the sun shining on my face. About 6 or 7 of Patrice’s friends from her church drama team showed up looking for her so we left her in their company.
I am still able to move my right foot and am so happy about that because Dr. D says that the sideways movement is due to lessening of the swelling in the “S” region. This is especially good news to me because the S region is the region that controls my bladder and bowels. thank you God for the manifestation of your healing.
Sunday, October 24, 2010
Its a free day and I didnt do anything but rest in the morning. I actually stayed in bed til about 1:00 pm. Mike came by to bring me the mail and Kevin came by also. We attempted to go the the Botanical Garden but it is closed on Sundays so we had to walk back around the entire building but took a detour to Burger King. I spilled food all down my shirt and immediately had to hold back the tears when I noticed it. Argh! I couldn’t dare shed a tear over that while Mike is around. I think he saw that I was about to cry and he said that it wasnt because of my condition but that that happens anyway to everyone. Kevin went to get me water to clean my shirt. Ugh! We went back to the room and Ralph came by with a caramel macchiato. They all visited for awhile and when everyone left, I fell to sleep. Today was a good day.
Monday, October 25, 2010
I had to transfer to the commode this morning for the bowel program and it was a disaster. It was at the higher height to get me use to the height for the bed at home and I was not successful when transferring back to the bed. Genet, the RN was not helpful in assisting me up onto the bed and I fell. Several people had to come and get me up. My legs had gotten all twisted underneath me and I was afraid that I had hurt myself and could not feel it.
My next session was with Meggie and we worked on transferring onto the commode again with the board beneath my feet to provide additional support and prevent my feet from dangling. I was successful each time.
Next session was with Ray and we went to In & Out Burger. On the way there we ran into a few obstacles that need to be addressed regarding the front wheels of the wheelchair. They kept getting stuck on uneven sidewalk surfaces. I was thinking that i honestly don’t know how I’m going to manage this is real life once I leave the hospital. I’m so afraid to leave the safety net of the hospital and all the hospital staff members.
I then had another session with Meggie and we worked on arm strength. Last session was with Breanne and we worked on me poppin’ a wheelie to get over uneven surfaces that may become and obstacle in the wheelchair. That was the hardest thing to try at the end of the day.
Dr. Alexander, Dr. Dorsch and Clair came in to examine me and Dr Alexander asked me if I would be a guest at their conference in January. The rhumatolagists came by to talk about the Citoxan treatment and it has been rescheduled for Tuesday at 12 noon instead of today.
Tuesday, October 26, 2010
I had the Citoxan treatment today. Mike showed up in the morning and surprised me. I really didnt think he would show up. Once they put the benedryl in my IV I was three sheets to the wind. I was trying to do the exercise that Breanne was having me do with rolling the ball and I could not even do it. I then tried to focus on Mike’s face but I couldnt hold on to being awake. When I opened my eyes again he was gone and only Mary Gay was standing next to the IV pole. During the process, I woke up once with a pain in my chest, I told someone but I dont remember who and I fell back to sleep. It was like a tightening across my chest. Most of the rest of the night was a blur and I dont remember anything. I was just glad that I had the foley in and that I didnt have to wake up and cath myself.
Wednesday, October 27, 2010
Occupational therapy with Meggie this morning and we did the commode transfer. It took awhile for me to have a bowel movement but it was good enough. I was very nauseous this morning and had dry heaves.
Most of the remainder of the day was filled with trying to get ready to go home tomorrow. Lots of mishaps and miscommunication on the part of the staff here. Argh! As it turns out, I will be going home on Friday instead of today. Right now I just want to be alone with a nurse/care giver. I don’t want to go home and yet I don’t want to be here anymore!!!!! I feel weak today and it is probably because of the chemo yesterday. I feel like my head is in a cloud and I cant focus clearly either with my thoughts or with my actual eyesight. I feel like crying and the tears just well up in my eyes by I am going to fight this feeling back. God told me that all is ok with me and I believe him. I will stand on God’s word.
For the past three nights, I’ve gotten a special “Lullaby Back Massage from Rhoda ma Boda” but she is not here for the next few days so it will be much harder for me to fall to sleep tonite.
Thursday, October 28, 2010
After transferring to the commode, my blood pressure dropped drastically (69 over 47) after having sat there for awhile. I had to be lifted back onto the bed so that my pressure could readjust.
I worked thru PT session with Larona, Meggie and Christy today just to go over what I’ve learned. All my sessions were over by 12 pm so I spent the afternoon making calls and trying to get ready to go home tomorrow. I spoke wtih Anthony regarding supplies, apartments and gym facilities (Next Step) and with Julienne regarding car conversion and cathing. They will be good resources for me. Otherwise I rested today and tried to exercise my legs from the bed. I said goodbye to LaTeetra tonite with a big hug and tears in my eyes. I am gonna miss that gal. She was my comic relief here – always making me laugh!
Gail and Alex came by at apps 9:00 p.m. and visited for a short while. I went to sleep right after they left.
Friday, October 29, 2010
I have been awake since 6:00 a.m. and am trying to wrap my head around the fact that I go home today. I am anxious about it because it means that I am at the mercy of Mike and his kids.
OK, so the doctors have come in to see me and because of my bladder problem, Dr. Alexander has decided to keep me a few more days, thinking that I should be seen by a urologist who specializes in spinal cord injuries.
Poor Mike, I was almost scared to tell him thinking that he would get mad for so many changes and not being able to plan anything or for disrupting his schedule. He said he was up until 3:00 a.m. making sure that everything was in order. Geeezzz, I feel bad. I just have to throw in my thoughts here that I just love Mike so much that I dont know what to do with all the feelings that I have for him, they are overwhelming and sometimes I just wanna smother him with love and sometimes I wanna smother him with a pillow – HAHAHAHAHAHAHAHAHAHAHA! Aye, yay,yay!
So, anyway, I got a therapy session squeezed in this afternoon with Breanne, I got onto my stomach and we did the “scary cat” position and she helped me to lift my arms onto the ledge of the window and she adjusted my feet. This was an exercise that could possibly help me to get up onto something in case I fell or if I wanted to get onto the couch from being on the floor.
It is 4:00 p.m. and I am back in the chair and back here journaling. Patrice’s cousin came by earlier dressed up like the security guard from “Martin” and his side kick was “Pebbles” (I think). Mike came by tonite while I was sleep. He stayed til about 10:30 or 11:00… we just chit-chatted about nothing really. While he was here I had the most involuntary leg and foot movement that I have ever had. After he left, I just layed here and tried to move my legs and feet until I fell asleep. No bowel movement today except for two small pellets in the morning commode transfer.
Saturday, October 30, 2010
I only had one session today with Ray at 10:30 a.m. We went outside and down the street toward the UCLA campus. We went thru the UCLA bookstore and hung out in the Courtyard for awhile to take in the air and sunshine. We went back and I hung out in the chair for awhile before going back to bed. I was feeling tired and I think it was from the new medication. It didnt make me as groggy in the morning hours nor did it make my mouth so dry. But it obvioulsy made me tired because I fell asleep at about 2:30 and woke up at 7:30.
The good news of the day is that I am having movement in my legs. The majority of the movement is happening in the right leg. I can see muscle movement all the way up to the inner side of my thigh. Also, I am having a great deal of muscle spasms and involuntary leg movement. Not as much as last night but still alot. When I woke up this morning to cath (6:00 a.m.), I paged Francois because I was feeling really weird. It felt as if I could not move at the hips. He pointed out to me that its probably the fact that I actually feel my hips right now and it just feels weird/different. I thought to myself, hmmmm, well that makes alot of sense! I was then excited that I felt the pain and discomfort. At least I am feeling something.
No bowel movement today. Now, my bladder is another problem. I only got appx 250 to 300 of fluid during the afternoon hours, then I had Doreth do it and she got about 500 but she also had a problem cathing, as if there were a blockage of some sort. She called Dr. Alexander to let him know.
Sunday, October 31, 2010
I can still move my right leg when I woke up. At 2:00 a.m., I had Pam the nurse do the cathing to ensure that I was not doing something wrong because I saw bright red blood the last time that I did it. She saw nothing. At the 6:00 a.m. cathing, I did it while Rhoda watched to see if there were any problem. There was none. I did the bowel program at 10:00 a.m. Doreth did the suppository and she didn’t feel too much. I transferred to the commode without any problems. I only had a few round stools. I dont feel bloated or anything though. I guess the bowels just have to move down further. Dr. Alexander directed Doreth to insert a foley catheter. Ugh! What is going on with this!? Its 2pm and I haven’t been out of the bed except for transferring to the commode. I’m gonna go back to sleep while listening to some gospel music.
Dr. Alexander came by and said that he wants urology to see me tomorrow. A short while after he left Dr Peng and his boss (Dr. _____) came by and said that they want urology to see me and also that they want another MRI done of my entire spine to see if the sacral or lower region is the root of the problem with my bladder.
Monday, November 1, 2010
Today was a busy schedule for PT and OT. The medication that they are giving me for my bladder is making me soooo sleepy and makes my vision blurry. I have nothing to report today. Progress is slow and steady. The ambulance came at midnight to take me to get my MRI. I got back to my bed at 3:30 a.m.
Tuesday, November 2, 2010
OK, this is a great report!!!!! While in PT with Larona, I moved my leg, kicked out my leg from the knee down and pushed her with my foot so much so that she lost her balance on the bench because she didn’t expect there to be so much strength behind the push. Larona, and I both screamed with excitement. She was so excited that she went to tell Dr. Alexander. He came in and saw and was excited as well.
I go home tomorrow – its official. I think that I am mentally prepared to go now, I just wish I had this bowel and bladder thing under control.
Wednesday, November 3, 2010
Today I go home. Mike will be here shortly to take me home. I bid goodbye to everyone at appx 11:30 when Mike and Vernon came at appx 11:30 a.m. to get me. It was kinda sad to leave all of the faces that had cared for me while I have been here. I especially took a liking to Grace, Phil, Lateetra and Francois. My PT Larona and my OT Meggie have been the absolute best with my therapy. I will miss them but I am certainly glad to leave and transition to the next road to my route to recovery.
Wednesday, November 17, 2010
It has been two weeks that I have been home from UCLA’s Neurological Rehabilitation and Research Unit (NRRU) and today is the first day that I have felt like journaling. That is not for any good, bad or indifferent reason other than I just havent felt like it. It felt really good to be home and sleep in my own bed. My lord, my lord, I got into my bed and realized that sleeping in the hospital beds was much like sleeping on a box of rocks. I did have some reservations about everyone seeing or reacting to me being in a wheelchair but everyone acted pretty normal. I have had a couple of days where my spirits got pretty low and actually cried out of frustration from not being able to do things without the help of another. I absolutely HATE asking people to fix me food. I dont know why but it always seems as if I am imposing on everyone. Not that they have made me feel that way, its just the way that I feel. There has to be a lesson in this for me somewhere with regard to some of my character flaws and the need for me to correct them. Hmmmmmmmm. Mike has far exceeded my expectations as far as how well he helps me. I have to make sure that I do something crazy big for him when I get well. All of the kids have been great and very accomodating, even Porche, the newest addition to the household. Yesterday and today, I feel especially good. I actually feel like getting out and about and feel like socializing more than I have since I have been home. Since I have left the hospital, I have been able to lift my right leg from my foot to the knee. The left leg has not been responding at the same pace as the right but this morning I tried to lift the left and still has mimimal response until about 10:30 a.m. when I tried again and was able to lift it midway up. Yeaaaaah!!!!!!!!
MORE TO FOLLOW, I’M STILL EDITING, KEEP CHECKING BACK