In January this year, I came across a monthly newsletter from Robinson Memorial Hospital in Ravenna Oh. The cover story was about someone who suffered from bowel incontinence and the treatment she underwent to hopefully to treat it. Her story is so similar to mine in the symptoms she had and how they affected her life, especially the severity of the problem which eventually caused her to be home bound...just like me. The treatment she underwent is called InterStim Sacral Nerve Stimulation which controls nerve signals from the brain to the rectal and anal sphincter muscles. It's an implantable neurostimulator(pacemaker like device) that is placed in the lower back. Leads (thin wires) from the device are connected to the sacral nerves to improve bowel control. She spoke of how, just even during the trial period, her symptoms had greatly improved and she was almost completely back to her old life. She decided to have the device permanently implanted and she Is back to her old life and planning new things. I was stunned and excited at the same time since I Never dreamed I'd ever hear of such a possibility.
I thought, could this be for me? Would it work even though I'm disabled? I thought back on a lifetime of prayers expressed to God through tears, pain and embarrassment and wondered...is this the answer to those prayers? I decided to visit my Primary Care Physician, Dr. Mineo to discuss it with him and get the needed referral for a consultation. He knew of the therapy and spoke well of the specialist, Dr. Yuh. He gave me a phone number, wished me good luck and asked I keep him up to date on how things were going and as always contact him with any other questions or concerns. I went home and scheduled an appointment.
About a week later, I was in Dr. Yuh's office with my aide who graciously went with me to help make sure I asked all questions I wanted and understood all I was hearing. He is nice, kind and very interested in finding solutions. In order to understand my situation better, he wanted me to do a week long journal so he could get an idea of how severe my problem was. He also wanted to do a colonoscopy to determine if I was okay health wise to proceed.
Let me tell you...I Never Wanna Do Another Colon-Prep As Long As I Live! I made it through most phases of it til I had to do the Gatorade and Miralax mix. I drank so much I cramped, but I kept going thinking "I've gotta finish this, gotta finish this". At one point, I looked at the floor and it was wet. I went to my room to change and just got water everywhere...again, no clean space to sit. Needless to say my wheelchair seat was ruined. I kept saying to myself, this's gonna be the last Major accident you deal with, just a little while longer. I finally got myself, my bed and my chair(somewhat)cleaned up and I laid down around 3a.m. The procedure time couldn't come fast enough.
Thursday, May 2, 2013
Friday, April 12, 2013
Shit Happens(Not for the easily offended. Don't wanna read? Please don't judge)
Every time I hear this phrase, I can reasonably guess the speaker's experienced something unpleasant, unfair, unfortunate...you get the idea. I attempt to show some empathy for the situation, but out of irritation usually end up thinking "If you only knew?!"
Living with a disability, I'd like to think I've done my best to demonstrate what I can do, not what I can't. I do my best to not let life get or keep me down, which can bring others down. If people have questions, I answer them to the best of my ability...my thinking is, knowledge leads to understanding which in turn leads...hopefully to acceptance, therefore no subject's off limits. This was especially helpful in school and I felt very accepted and loved by most, if not all my classmates. They pretty much knew everything. They knew why I had an aide(a lady who helped me to classes safely; assist with standing, sitting and personal care needs). They knew I catheterized myself, therefore could easily pee in anything: vinyl glove, pop can/bottle...wait maybe that was just an open joke between the aide and I? I tried to have a sense of humor about a lot however, I don't think they fully understood the difficulty and embarrassment I live with having bowel/bladder incontinence(lack of control) and constipation. Many times I had to be excused from classes or extracurricular activities to change wet or soiled clothes after what I called a "problem or accident." If I was in class I discreetly mentioned I needed my aide to come get me. Once she did, I hoped I'd make it out of the room without any bad smells or puddles left behind. Sometimes, I think my friends could tell I was embarrassed so they tried to make me feel better. I graduated and tried to not let it get too me.
As I got older the issue persisted, but I usually had someone nearby to assist with clean up so I didn't really feel the burden until I entered the workforce. I noticed "accidents" occurred more frequently, and considering I didn't have an aide I was unsure how to handle the situation. I would quietly call mom, arrange for her to come, help me clean up and get me back to work without anyone really knowing she was there or why. My supervisor did find out and was hurt that I didn't feel comfortable enough to ask her for help. Appreciating her support, from then on I asked her. Things seemed to go okay until she wasn't there and I asked the Executive Assistant to the HR Director! The next thing I knew I was in a meeting with the HR Director, the Company Lawyer and my supervisor to discuss the problem and what to do about it. From that meeting, I decided to try wearing another kind of padding that hopefully I could change myself when needed. That hardly worked. I felt bitter and betrayed. Not long after, I resigned.
Thankfully, I was working a part-time weekend job where I felt accepted. I knew I wouldn't have the same difficulty. Ironically, I didn't seem to be experiencing stomach problems as often either. It seemed that they only happened every couple months or so, I really couldn't figure out why but also didn't really give it a lot of thought either.
In the early/mid 2000s, I noticed things seemed to get worse. Bowel issues were more frequent and I couldn't really understand why. Wrong food? Too much/little mobility or exercise? Sometimes, I'd have 2 or 3 problems in a day. I never knew if I was gonna deal with rocks, paste or a flood. These episodes have made me so sick and weak I often end up sleeping for an hour or so after. I did what I could to not allow it to affect employment. Many times, I'd actually be having an accident On The Way to work. I didn't know what else to do but show up, sit in it for a while then call for a break. While in the bathroom, I would act as if I'd just discovered the problem, say I needed to go home then leave. A couple times, I tried returning to work but ended up sick again so I'd go home and stay home for the night. After that, I'd just call off if I had even the slightest indication I was gonna have a problem. I only shared my feelings about this with a couple co-workers who were real friends. One day while talking and feeling not so down about the situation I said "what can ya say...shit happens." Kinda felt good to attempt humor about it.
I made every effort to find out what could be the problem. I met with a GI Dr. who tested me for Celiac Disease; Chrones Disease; Diverticulitis. All came back negative. What I did learn was I have an enlarged colon. The Dr. said my body just keeps storing waste until it's ready to release it. We discussed solutions both medicinal and dietary that may help address the incontinence/constipation and hopefully reduce problems. That only worked for so long. Living independently is awesome in so many ways, but when a bowel issue happens...not so much. There have been plenty of times recently where I've been alone and had to clean up huge messes. Often times, I can't see how much and what kinda(rocks,paste) I'm dealing with so I end up smearing it all over the bed and can't find clean space to clean myself up. The last time I was in this situation I kept thinking "what employer would want you?" What Guy would want to Date or Marry you? I felt a desperation and hopelessness I'd never known. I didn't know where to turn.
Living with a disability, I'd like to think I've done my best to demonstrate what I can do, not what I can't. I do my best to not let life get or keep me down, which can bring others down. If people have questions, I answer them to the best of my ability...my thinking is, knowledge leads to understanding which in turn leads...hopefully to acceptance, therefore no subject's off limits. This was especially helpful in school and I felt very accepted and loved by most, if not all my classmates. They pretty much knew everything. They knew why I had an aide(a lady who helped me to classes safely; assist with standing, sitting and personal care needs). They knew I catheterized myself, therefore could easily pee in anything: vinyl glove, pop can/bottle...wait maybe that was just an open joke between the aide and I? I tried to have a sense of humor about a lot however, I don't think they fully understood the difficulty and embarrassment I live with having bowel/bladder incontinence(lack of control) and constipation. Many times I had to be excused from classes or extracurricular activities to change wet or soiled clothes after what I called a "problem or accident." If I was in class I discreetly mentioned I needed my aide to come get me. Once she did, I hoped I'd make it out of the room without any bad smells or puddles left behind. Sometimes, I think my friends could tell I was embarrassed so they tried to make me feel better. I graduated and tried to not let it get too me.
As I got older the issue persisted, but I usually had someone nearby to assist with clean up so I didn't really feel the burden until I entered the workforce. I noticed "accidents" occurred more frequently, and considering I didn't have an aide I was unsure how to handle the situation. I would quietly call mom, arrange for her to come, help me clean up and get me back to work without anyone really knowing she was there or why. My supervisor did find out and was hurt that I didn't feel comfortable enough to ask her for help. Appreciating her support, from then on I asked her. Things seemed to go okay until she wasn't there and I asked the Executive Assistant to the HR Director! The next thing I knew I was in a meeting with the HR Director, the Company Lawyer and my supervisor to discuss the problem and what to do about it. From that meeting, I decided to try wearing another kind of padding that hopefully I could change myself when needed. That hardly worked. I felt bitter and betrayed. Not long after, I resigned.
Thankfully, I was working a part-time weekend job where I felt accepted. I knew I wouldn't have the same difficulty. Ironically, I didn't seem to be experiencing stomach problems as often either. It seemed that they only happened every couple months or so, I really couldn't figure out why but also didn't really give it a lot of thought either.
In the early/mid 2000s, I noticed things seemed to get worse. Bowel issues were more frequent and I couldn't really understand why. Wrong food? Too much/little mobility or exercise? Sometimes, I'd have 2 or 3 problems in a day. I never knew if I was gonna deal with rocks, paste or a flood. These episodes have made me so sick and weak I often end up sleeping for an hour or so after. I did what I could to not allow it to affect employment. Many times, I'd actually be having an accident On The Way to work. I didn't know what else to do but show up, sit in it for a while then call for a break. While in the bathroom, I would act as if I'd just discovered the problem, say I needed to go home then leave. A couple times, I tried returning to work but ended up sick again so I'd go home and stay home for the night. After that, I'd just call off if I had even the slightest indication I was gonna have a problem. I only shared my feelings about this with a couple co-workers who were real friends. One day while talking and feeling not so down about the situation I said "what can ya say...shit happens." Kinda felt good to attempt humor about it.
I made every effort to find out what could be the problem. I met with a GI Dr. who tested me for Celiac Disease; Chrones Disease; Diverticulitis. All came back negative. What I did learn was I have an enlarged colon. The Dr. said my body just keeps storing waste until it's ready to release it. We discussed solutions both medicinal and dietary that may help address the incontinence/constipation and hopefully reduce problems. That only worked for so long. Living independently is awesome in so many ways, but when a bowel issue happens...not so much. There have been plenty of times recently where I've been alone and had to clean up huge messes. Often times, I can't see how much and what kinda(rocks,paste) I'm dealing with so I end up smearing it all over the bed and can't find clean space to clean myself up. The last time I was in this situation I kept thinking "what employer would want you?" What Guy would want to Date or Marry you? I felt a desperation and hopelessness I'd never known. I didn't know where to turn.
Friday, March 29, 2013
2011-12 The Road to Recovery and Relearning to Live
As I mentioned, once I was home I'd be on Lovenox injections for the clot and two weeks left of antibiotics(Vancomycin) to continue killing the infection. I decided that I would mostly stay in bed resting and regaining strength until the IV treatment was complete. Blessed with good home aide staff, I was well cared for and recovering nicely. Cards, calls and letters of encouragement were much appreciated. My best friend came over often(as she did before I actually was admitted)and just hung out in my room with me talkin' about girl stuff and watching TV.
November came, finally I was done with IV treatments and each day slowly got up out of bed. The first time I got in my wheelchair I felt dizzy, uneasy and almost off balance. With all the weight of the fluid and other waste off my abdomen and stomach, I lost 21lbs. I couldn't believe how easy movement was. I could bend, stretch, do better personal care and reach things I hadn't been able too in probably 2-3years(suspected amount of time fluid accumulated before getting real bad). All I can say is I felt like new again. I got excited over what...to others seemed like the most trivial things. I didn't care. I was just happy to be in better health and vowed have a better overall outlook on life focusing on the positive and not sweatin' the small stuff. Even though it was fall, the weather was beautiful. It felt wonderful to get out and actually see and feel the sun. I think there were even still some leaves on trees...could be wrong about that though. I enjoyed being able to sit outside or go for short visits with neighbors. Each day was better than the last.
Slowly my strength improved yet I felt the need for more help if I wanted to return to work after the New Year. I discussed the possibility of therapy with my Medicaid case manager and soon someone was coming to my place a couple times a week. She taught exercises of varying difficulty levels each visit. I did my best to remain disciplined and on track so it would be beneficial. Many times, it felt really good physically and sometimes I got carried away doing them. I had to remind myself to slow down and go easy. Finally I felt ready to get back on track with life.
After New Year 2012, I returned to work. Unfortunately, due to what I was told were budget issues, my hours would be reduced yet I would work more days. I wasn't totally thrilled but needed to work and knew that I would be able to perform my duties better than before, now that I was totally healthy so I went back. It was great to see co-workers, the families and individuals we served. I was back about two weeks before a problem occurred. I discussed with my supervisor my need to have a day off to go to one last, pre-scheduled appointment that related to the blood clot in my leg. Due to my reduced hours and different attendance expectations, she denied my request. In good faith, I tried to reschedule but was unable. I mentioned this with the assurance that my attendance wouldn't become an issue afterward...it didn't matter. I felt crushed and backed into a corner. I didn't know what to do. This was a place that had played an important role in my life by giving me the start that no one else would. I worked there 18yrs. It shaped who I became and I realized I let it define me. I went home angry, spending the weekend sadly, prayerfully deciding what my next step would be.
I thought back to a day during my recent stay at CCF in which I received a call from my supervisor scolding me for being a no call no show to my shift. Mind you, Everyone Else at work knew where I was, the state of my health and praying for me. I thought "how does she not know?" Made me feel as though I was only a position filler, not someone she had known for years and had any care or concern for. This wasn't the same organization or people I thought I knew. My decision was made. I needed to take care of me first so come Monday morning, I submitted my resignation. Unfortunately, due to the circumstances, I was leaving without having a new job secured. The appointment in question happened during my final two weeks. The day after, I saw an e-mail asking coworkers to help fill in my shift, making it appear I carelessly called off last minute.
My last day came and went. At first, I enjoyed my time. I felt as if a large weight had been lifted. Attempting to see this as a new start, I began thinking about what career choices I might like to investigate. I considered how I always love watching anything that has to do with weddings like Say Yes To The Dress or My Fair Wedding with David Tutterra. I researched what I'd need to do to begin. I looked into a school where I could take correspondence type courses and earn a diploma in two years. I signed up and received my first packet. I also began looking for new employment. I went everywhere I could think of: retail stores, restaurants, hotel/motels, staffing agencies. Lots of places looked at my resume puzzled by my history. "Why leave your last job after 18yrs.?" I didn't want to lie, yet I didn't know how to phrase my answer. This started to do a job on my self esteem and play with my mind. However, I did what I could to maintain an upbeat, positive attitude believing the right job was out there for me.
I had happy times. My sister and I got reacquainted after a rough patch. My best friend Erin finally told me she and her husband were expecting their first child. She had known since Sept., right around the time I really began to get sick. I was So Excited for her and started thinking about what I could do to plan something special for her to celebrate. It seemed like the least I could do after all she had done for me in the last few years. In the spring, I helped plan and pull off an nice baby shower at church for her. We had a nice turn out with good food, fun and lots of great gifts for mom and baby.
I was still job hunting. I looked online, had feelers out to friends and family who would pass along adds that I would look over and respond to if I felt I had the qualifications. Many rejections came. I started to feel sad, yet would talk myself out of it attempting to keep positive, reminding myself of much worse circumstances I had just survived. One beautiful spring day, I went to our local Outlet Mall stopping in most, if not all the stores asking for applications. I spent a good 6-8hrs. there and came home with about 60 applications and a few links to online apps. I went home, rolled up my sleeves and began filling them all out. I returned them and waited. I was exhausted so I took a few days off from my search. I hoped and prayed all that time spent wouldn't be in vain. I Finally Got A Call From One Of The Stores! They wanted an interview the next week. It seemed to go well. I waited and waited only to learn they wouldn't be doing second interviews due to reduced hours. I was disappointed yet took it as experience with interviewing. A couple other stores called for interviews but the results were basically the same either not enough hours or I didn't even qualify to work in retail. Around this time, neighbors who I had become friends with moved and we lost touch. My Celebrate Recovery group was canceled and job rejections were becoming the norm.
Summer started and I was still searching. I became concerned about multiple UTI's I'd been having. What was causing them? How do I stop them? I discussed my symptoms and concerns with my Primary Dr. He referred me to a Uro-gynecologist. He did different testing which resulted in him saying I'm overall healthy but maybe needed a new prophylactic med. to keep the problem away.
Summer was turning to fall and I was still job hunting. By this time, I was growing ever deeper in debt and not going anywhere fast. I was also losing interest in life and finding more reasons to just stay in bed. "No one needs me(my help)" "No one's looking for me" "There's no job to go to" I'd say. One day, I was working on the checkbook. I couldn't get it too balance which wasn't normal, I could usually figure it out. I Snapped! At that moment, everything hit me all at once. The unresolved feelings from my illness, job loss and other issues. I felt I couldn't handle it anymore. I called my Celebrate Recovery sponsor crying. She listened patiently and lovingly, however she was at a loss. She recommended I talk with my Dr. to see what he would suggest. I met with him and he prescribed an antidepressant and counseling. Both of which I began immediately. Things slowly began to improve, not my circumstances but my outlook. I took things day to day again, sometimes minute by minute.
November came, finally I was done with IV treatments and each day slowly got up out of bed. The first time I got in my wheelchair I felt dizzy, uneasy and almost off balance. With all the weight of the fluid and other waste off my abdomen and stomach, I lost 21lbs. I couldn't believe how easy movement was. I could bend, stretch, do better personal care and reach things I hadn't been able too in probably 2-3years(suspected amount of time fluid accumulated before getting real bad). All I can say is I felt like new again. I got excited over what...to others seemed like the most trivial things. I didn't care. I was just happy to be in better health and vowed have a better overall outlook on life focusing on the positive and not sweatin' the small stuff. Even though it was fall, the weather was beautiful. It felt wonderful to get out and actually see and feel the sun. I think there were even still some leaves on trees...could be wrong about that though. I enjoyed being able to sit outside or go for short visits with neighbors. Each day was better than the last.
Slowly my strength improved yet I felt the need for more help if I wanted to return to work after the New Year. I discussed the possibility of therapy with my Medicaid case manager and soon someone was coming to my place a couple times a week. She taught exercises of varying difficulty levels each visit. I did my best to remain disciplined and on track so it would be beneficial. Many times, it felt really good physically and sometimes I got carried away doing them. I had to remind myself to slow down and go easy. Finally I felt ready to get back on track with life.
After New Year 2012, I returned to work. Unfortunately, due to what I was told were budget issues, my hours would be reduced yet I would work more days. I wasn't totally thrilled but needed to work and knew that I would be able to perform my duties better than before, now that I was totally healthy so I went back. It was great to see co-workers, the families and individuals we served. I was back about two weeks before a problem occurred. I discussed with my supervisor my need to have a day off to go to one last, pre-scheduled appointment that related to the blood clot in my leg. Due to my reduced hours and different attendance expectations, she denied my request. In good faith, I tried to reschedule but was unable. I mentioned this with the assurance that my attendance wouldn't become an issue afterward...it didn't matter. I felt crushed and backed into a corner. I didn't know what to do. This was a place that had played an important role in my life by giving me the start that no one else would. I worked there 18yrs. It shaped who I became and I realized I let it define me. I went home angry, spending the weekend sadly, prayerfully deciding what my next step would be.
I thought back to a day during my recent stay at CCF in which I received a call from my supervisor scolding me for being a no call no show to my shift. Mind you, Everyone Else at work knew where I was, the state of my health and praying for me. I thought "how does she not know?" Made me feel as though I was only a position filler, not someone she had known for years and had any care or concern for. This wasn't the same organization or people I thought I knew. My decision was made. I needed to take care of me first so come Monday morning, I submitted my resignation. Unfortunately, due to the circumstances, I was leaving without having a new job secured. The appointment in question happened during my final two weeks. The day after, I saw an e-mail asking coworkers to help fill in my shift, making it appear I carelessly called off last minute.
My last day came and went. At first, I enjoyed my time. I felt as if a large weight had been lifted. Attempting to see this as a new start, I began thinking about what career choices I might like to investigate. I considered how I always love watching anything that has to do with weddings like Say Yes To The Dress or My Fair Wedding with David Tutterra. I researched what I'd need to do to begin. I looked into a school where I could take correspondence type courses and earn a diploma in two years. I signed up and received my first packet. I also began looking for new employment. I went everywhere I could think of: retail stores, restaurants, hotel/motels, staffing agencies. Lots of places looked at my resume puzzled by my history. "Why leave your last job after 18yrs.?" I didn't want to lie, yet I didn't know how to phrase my answer. This started to do a job on my self esteem and play with my mind. However, I did what I could to maintain an upbeat, positive attitude believing the right job was out there for me.
I had happy times. My sister and I got reacquainted after a rough patch. My best friend Erin finally told me she and her husband were expecting their first child. She had known since Sept., right around the time I really began to get sick. I was So Excited for her and started thinking about what I could do to plan something special for her to celebrate. It seemed like the least I could do after all she had done for me in the last few years. In the spring, I helped plan and pull off an nice baby shower at church for her. We had a nice turn out with good food, fun and lots of great gifts for mom and baby.
I was still job hunting. I looked online, had feelers out to friends and family who would pass along adds that I would look over and respond to if I felt I had the qualifications. Many rejections came. I started to feel sad, yet would talk myself out of it attempting to keep positive, reminding myself of much worse circumstances I had just survived. One beautiful spring day, I went to our local Outlet Mall stopping in most, if not all the stores asking for applications. I spent a good 6-8hrs. there and came home with about 60 applications and a few links to online apps. I went home, rolled up my sleeves and began filling them all out. I returned them and waited. I was exhausted so I took a few days off from my search. I hoped and prayed all that time spent wouldn't be in vain. I Finally Got A Call From One Of The Stores! They wanted an interview the next week. It seemed to go well. I waited and waited only to learn they wouldn't be doing second interviews due to reduced hours. I was disappointed yet took it as experience with interviewing. A couple other stores called for interviews but the results were basically the same either not enough hours or I didn't even qualify to work in retail. Around this time, neighbors who I had become friends with moved and we lost touch. My Celebrate Recovery group was canceled and job rejections were becoming the norm.
Summer started and I was still searching. I became concerned about multiple UTI's I'd been having. What was causing them? How do I stop them? I discussed my symptoms and concerns with my Primary Dr. He referred me to a Uro-gynecologist. He did different testing which resulted in him saying I'm overall healthy but maybe needed a new prophylactic med. to keep the problem away.
Summer was turning to fall and I was still job hunting. By this time, I was growing ever deeper in debt and not going anywhere fast. I was also losing interest in life and finding more reasons to just stay in bed. "No one needs me(my help)" "No one's looking for me" "There's no job to go to" I'd say. One day, I was working on the checkbook. I couldn't get it too balance which wasn't normal, I could usually figure it out. I Snapped! At that moment, everything hit me all at once. The unresolved feelings from my illness, job loss and other issues. I felt I couldn't handle it anymore. I called my Celebrate Recovery sponsor crying. She listened patiently and lovingly, however she was at a loss. She recommended I talk with my Dr. to see what he would suggest. I met with him and he prescribed an antidepressant and counseling. Both of which I began immediately. Things slowly began to improve, not my circumstances but my outlook. I took things day to day again, sometimes minute by minute.
Thursday, March 28, 2013
The Unknown and Beyond - Part 3
Sept.-Oct. 2011 I failed to mention that after the surgery, I'd have to wait 7 days to have another shunt inserted. Okay, where was I? Oh...while there was no malfunction there was infection so I was given Vancomyacin to combat it so as to keep it from spreading. The next few days were mostly more testing and waiting. Still no real conclusive answers as to the how and why of the fluid build-up. This was beginning to alarm me. In all my 30 some years (up to that point) of having 20 or more operations, I was always used to discovering what the problem was, what needed to be done and how long recovery would be. I never had any doubt or concern I wouldn't make it through. I knew God was in control. This was another monster all together. I began asking "if they can't find the cause, what next?" or "how can I handle this happening again?" I questioned and doubted God a lot. "Why did this happen?" What did I do?""Will I live?"
I was beginning to have what Drs. called cardiac PVC's (something like irregular, skipping heartbeats...is that the same thing :/ ). I really was getting scared now. I was hooked up to monitors that the nurses could keep track of from their station. Anytime my monitor's would show a problem they'd come in asking if I was okay. I got a little puzzled 'cause I felt fine. Then when I would feel something, the monitor's wouldn't make a sound or alert the nurses so I had too call them. It was weird and frustrating. At this point, for a lot of different reasons, I began to feel hopeless. I didn't want to alarm anyone so I kept a lot of thoughts private(shocking I know) yet inwardly, being absolutely certain of my salvation, I wanted to die and be with my Savior and those I'd missed so much. It was only recently during a conversation I admitted this to my mom. She said she could tell by the pain in my eyes and face...I thought "wow, there really is No Hiding Anything From Mom"
I also got tired of my hair and the hassel so I decided to shave it off. After getting the okay from the nurse, who tried to convince me against it, I called and asked if mom would help me. She didn't want to but she did. As we were doing this a Dr. came in and attempted to help us understand why the fluid collected in the first place. Peritenitis(sp?).
A few days later, October 4 2011 I finally had surgery to insert a new shunt. I was Excited...The End Was In Sight. Now that the shunt was in we could focus on how best to care for the blood clot. We decided I would learn to do Lovenox injections for the next three months. That way I wouldn't need to worry about going to a Dr. frequently for Coumiden tests. Doing injections independently was scary since there are only certain perimeters in limited areas in which they can be given, and at first I wasted a lot of needles, but I did get the hang of it.
Even with things improving, I was cautious to get excited. I asked to wait a couple days to be discharged to insure the Lovenox was working on the clot and the new shunt wouldn't malfunction. The social workers didn't want me to go home even though I had home health aides to assist me. They felt it would be better for me to go to some kind of rehab facility or even see if Hattie Larlham could/would be able to accept me as a respite patient.. I Was Furious and Medicated, I argued with everyone! I wanted to be home, in my bed and my familiar surroundings. Eventually, I did make my case and on Oct. 7, 2011 I Went Home!
Upon my arrival, there were two nurses and my mom scurrying around the apartment reading discharge instructions deciding which meds. I'd need and reinstating my respite services. In addition, the phone rang incessantly....it was mostly blood sucking bill collectors. I had to explain my whereabouts and that I wouldn't be able to make payments until I had a better grasp on what the checking account balance was as I hadn't worked since mid Sept. With all that going on, I wanted to pull the covers over my head and hide...make it all go away. Before everyone left all prescriptions were filled, IV antibiotics administered and I had some pain meds. Thankful for peace, quite and looking for a new start...recovery began.
I was beginning to have what Drs. called cardiac PVC's (something like irregular, skipping heartbeats...is that the same thing :/ ). I really was getting scared now. I was hooked up to monitors that the nurses could keep track of from their station. Anytime my monitor's would show a problem they'd come in asking if I was okay. I got a little puzzled 'cause I felt fine. Then when I would feel something, the monitor's wouldn't make a sound or alert the nurses so I had too call them. It was weird and frustrating. At this point, for a lot of different reasons, I began to feel hopeless. I didn't want to alarm anyone so I kept a lot of thoughts private(shocking I know) yet inwardly, being absolutely certain of my salvation, I wanted to die and be with my Savior and those I'd missed so much. It was only recently during a conversation I admitted this to my mom. She said she could tell by the pain in my eyes and face...I thought "wow, there really is No Hiding Anything From Mom"
I also got tired of my hair and the hassel so I decided to shave it off. After getting the okay from the nurse, who tried to convince me against it, I called and asked if mom would help me. She didn't want to but she did. As we were doing this a Dr. came in and attempted to help us understand why the fluid collected in the first place. Peritenitis(sp?).
A few days later, October 4 2011 I finally had surgery to insert a new shunt. I was Excited...The End Was In Sight. Now that the shunt was in we could focus on how best to care for the blood clot. We decided I would learn to do Lovenox injections for the next three months. That way I wouldn't need to worry about going to a Dr. frequently for Coumiden tests. Doing injections independently was scary since there are only certain perimeters in limited areas in which they can be given, and at first I wasted a lot of needles, but I did get the hang of it.
Even with things improving, I was cautious to get excited. I asked to wait a couple days to be discharged to insure the Lovenox was working on the clot and the new shunt wouldn't malfunction. The social workers didn't want me to go home even though I had home health aides to assist me. They felt it would be better for me to go to some kind of rehab facility or even see if Hattie Larlham could/would be able to accept me as a respite patient.. I Was Furious and Medicated, I argued with everyone! I wanted to be home, in my bed and my familiar surroundings. Eventually, I did make my case and on Oct. 7, 2011 I Went Home!
Upon my arrival, there were two nurses and my mom scurrying around the apartment reading discharge instructions deciding which meds. I'd need and reinstating my respite services. In addition, the phone rang incessantly....it was mostly blood sucking bill collectors. I had to explain my whereabouts and that I wouldn't be able to make payments until I had a better grasp on what the checking account balance was as I hadn't worked since mid Sept. With all that going on, I wanted to pull the covers over my head and hide...make it all go away. Before everyone left all prescriptions were filled, IV antibiotics administered and I had some pain meds. Thankful for peace, quite and looking for a new start...recovery began.
Friday, March 15, 2013
The Unknown and Beyond - Part 2
Sept. 2011 After the procedure was complete, I must have fallen asleep 'cause the next thing I remember was being in something of a groggy/twilight, am I here or dreaming kinda state. I was taken to the Intensive Care Unit and brought into a dark room with only small overhead and hospital monitor lights glowing. As I slowly awoke, I had a better idea of where I was and recognized that I had seen this environment in a dream and didn't realize what was going on and why, weird I know.
The staff who were caring for me were awesome! I'm awful with names or I'd say, anyway, they were saying things to me like "it's been about a year since you were here" or "haven't seen you for a while." I was puzzled since I didn't recognize any of them yet I wanted to be polite so I kinda went along with it. The more we talked, I realized they were actually thinking I was my sister Tara who's been admitted to Cleveland Clinic more times than I can count.
The nurses did all they needed to get me settled in and as comfortable as possible, then I went back to sleep. Monday morning, my neurologist's residents came to see me. I was told they still were unable to tell what kind of fluid had collected and why...more testing was needed, plus I would need to have my shunt(a tube in my head used to help flow of spinal fluid) externalized to prevent or stop any infection from occurring. This is where my memory of exact order of events gets a little off. I believe it was this day they inserted a PICC line in my arm to prevent the need for so many needle sticks to do blood tests and IVs. Also, they did an MRI to make sure I had no blood clots....well I did. That had to be taken care of first.
Since I needed surgery for the shunt, I couldn't be put on meds to heal the clot, so Tuesday I had a filter inserted to prevent the clots travel from my groin to my heart or lungs. While in this procedure, the Dr's removed another 2.5 liters of fluid from my abdomen making the grand total Five Liters. This was a lot to handle in only a few days....I was exhausted and upon returning to my room...I Slept! Mom came almost daily, bringing mail and well wishes from friends and family. I also had my phone with me so I was also kinda able to stay connected through Facebook and Twitter. At this point, I was nervous yet still somewhat confident that answers to how, why and what to do were going to be found so I did my best to be calm and trust that God would see me through this.
The next day, I was scheduled for the shunt externalization surgery. I was prepped and sent down to the pre-op waiting area. I was asked all kinds of questions: "Do you know what's happening today, who's your Dr.", questions like that. Finally, someone came and I was wheeled right outside the operating room across from a wall that was mostly window. I remember how beautiful the sky looked and how happy I was since I hadn't really been able to see outside in awhile. The Dr. came out, talked to me and shortly thereafter was wheeled in. After being lifted to the operating table, they began hooking me up to the IV. Wouldn't you know the PICC line got clogged and Wouldn't Work!! I was so angry and panicked. I'll have any operation you tell me I need, but I Hate having IV's started. They had to do one in my hand, the most painful place in my opinion. In minutes I was off to sleep. Surgery successful, I awoke about an hour later in recovery. The Dr. mentioned that he didn't believe the fluid buildup was from shunt malfunction, so that made me happy. A little while later I returned to my room. And wouldn't you know, The PICC Line Started Working...Joy Joy!
The staff who were caring for me were awesome! I'm awful with names or I'd say, anyway, they were saying things to me like "it's been about a year since you were here" or "haven't seen you for a while." I was puzzled since I didn't recognize any of them yet I wanted to be polite so I kinda went along with it. The more we talked, I realized they were actually thinking I was my sister Tara who's been admitted to Cleveland Clinic more times than I can count.
The nurses did all they needed to get me settled in and as comfortable as possible, then I went back to sleep. Monday morning, my neurologist's residents came to see me. I was told they still were unable to tell what kind of fluid had collected and why...more testing was needed, plus I would need to have my shunt(a tube in my head used to help flow of spinal fluid) externalized to prevent or stop any infection from occurring. This is where my memory of exact order of events gets a little off. I believe it was this day they inserted a PICC line in my arm to prevent the need for so many needle sticks to do blood tests and IVs. Also, they did an MRI to make sure I had no blood clots....well I did. That had to be taken care of first.
Since I needed surgery for the shunt, I couldn't be put on meds to heal the clot, so Tuesday I had a filter inserted to prevent the clots travel from my groin to my heart or lungs. While in this procedure, the Dr's removed another 2.5 liters of fluid from my abdomen making the grand total Five Liters. This was a lot to handle in only a few days....I was exhausted and upon returning to my room...I Slept! Mom came almost daily, bringing mail and well wishes from friends and family. I also had my phone with me so I was also kinda able to stay connected through Facebook and Twitter. At this point, I was nervous yet still somewhat confident that answers to how, why and what to do were going to be found so I did my best to be calm and trust that God would see me through this.
The next day, I was scheduled for the shunt externalization surgery. I was prepped and sent down to the pre-op waiting area. I was asked all kinds of questions: "Do you know what's happening today, who's your Dr.", questions like that. Finally, someone came and I was wheeled right outside the operating room across from a wall that was mostly window. I remember how beautiful the sky looked and how happy I was since I hadn't really been able to see outside in awhile. The Dr. came out, talked to me and shortly thereafter was wheeled in. After being lifted to the operating table, they began hooking me up to the IV. Wouldn't you know the PICC line got clogged and Wouldn't Work!! I was so angry and panicked. I'll have any operation you tell me I need, but I Hate having IV's started. They had to do one in my hand, the most painful place in my opinion. In minutes I was off to sleep. Surgery successful, I awoke about an hour later in recovery. The Dr. mentioned that he didn't believe the fluid buildup was from shunt malfunction, so that made me happy. A little while later I returned to my room. And wouldn't you know, The PICC Line Started Working...Joy Joy!
Saturday, March 9, 2013
The Unknown and Beyond - Part 1
March 8, 2013
Aug./Sept. 2011 After the abdomenal fluid was discovered, I did see my urologist who said it was pressing on ureters causing other issues. I went home scared and not really knowing what to do. I was basically bedridden and being crushed under the weight.
I felt as if I would sink and disappear right in the bed. I didn't want to scare anyone so I kept a lot of fear to myself. At that time, I had three different aides coming at different times to check on me, help me eat, bathe(as much as possible while laying in bed). Washing my hair wasn't bad, yet since I mostly laid on my back, I kept rubbing matted knots in it and needed help(which I appreciate) untangling it which was becoming more bother than it was worth. After having tried an indwelling catheter(foley) which would get clogged sending me to the hospital for a short stay or the ER mutiple times to have a liter or more emptied, I finally decided I needed to have something more done. On Sunday September 18, 2011 family by my side, I called my Dr. and was told if I felt I needed to come to Cleveland Clinic ER, I should. Within an hour Med. Corps. came and I was on my way. I went alone since mom was needed at home to care for dad.
Arriving about another hour later, Drs. and nurses began working, first to give me some comfort, then to determine what needed to be done next. This's where my memory's faded a little and I'm sketchy about order of details. I believe ex-rays, CATscan and MRI were done to determine how and why the fluid collected. The next step was to drain the fluid as much as possible. I was prepped, numbed, sedated then a needle was injected in my neck to access my shunt. I held still for I think about an 1.5 hours. Pretty soon after the procedure started I began to feel relief and like there was a Lot less of me than there had been. I was told they had drain 2.5 liters off my abdomen. And They Weren't Done, There Was More...
Aug./Sept. 2011 After the abdomenal fluid was discovered, I did see my urologist who said it was pressing on ureters causing other issues. I went home scared and not really knowing what to do. I was basically bedridden and being crushed under the weight.
I felt as if I would sink and disappear right in the bed. I didn't want to scare anyone so I kept a lot of fear to myself. At that time, I had three different aides coming at different times to check on me, help me eat, bathe(as much as possible while laying in bed). Washing my hair wasn't bad, yet since I mostly laid on my back, I kept rubbing matted knots in it and needed help(which I appreciate) untangling it which was becoming more bother than it was worth. After having tried an indwelling catheter(foley) which would get clogged sending me to the hospital for a short stay or the ER mutiple times to have a liter or more emptied, I finally decided I needed to have something more done. On Sunday September 18, 2011 family by my side, I called my Dr. and was told if I felt I needed to come to Cleveland Clinic ER, I should. Within an hour Med. Corps. came and I was on my way. I went alone since mom was needed at home to care for dad.
Arriving about another hour later, Drs. and nurses began working, first to give me some comfort, then to determine what needed to be done next. This's where my memory's faded a little and I'm sketchy about order of details. I believe ex-rays, CATscan and MRI were done to determine how and why the fluid collected. The next step was to drain the fluid as much as possible. I was prepped, numbed, sedated then a needle was injected in my neck to access my shunt. I held still for I think about an 1.5 hours. Pretty soon after the procedure started I began to feel relief and like there was a Lot less of me than there had been. I was told they had drain 2.5 liters off my abdomen. And They Weren't Done, There Was More...
Friday, March 8, 2013
Back Again
March 8, 2013
Hi Everyone!! Remember Me? How've you all been? It's been a while since I've posted anything on Kara's Corner...So Sorry! Just coming by to say I'm gonna work on an update as to where I've been and what I've been up too in the year or so since I've been gone. Please feel free to read/reread my previous entries to learn more about me. I'll TRY to have the newest entry sometime tomorrow.
Kara
Hi Everyone!! Remember Me? How've you all been? It's been a while since I've posted anything on Kara's Corner...So Sorry! Just coming by to say I'm gonna work on an update as to where I've been and what I've been up too in the year or so since I've been gone. Please feel free to read/reread my previous entries to learn more about me. I'll TRY to have the newest entry sometime tomorrow.
Kara
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