I know we always say it...time flies...even in my mundane life...time flies...it is now late July and I cannot believe my symptoms began a year ago and worsened this week a year ago...incredible!!! I have learned and continue to learn so, so much in this crazy year! WOW! Patience (hhhhahahaaaa...) seems to be the word of the year...not a virtue...more of a practiced attitude.
A year. When I was first diagnosed with plain, simple GBS I was looking at six months to a year for recovery. When we switched the diagnosis to CIDP...we went to at least a year and most likely much more. It still is an unknown to us. Patience.
One of my readings yesterday allowed me to reflect on attitude. We blink one thousand times a day. Dark, light. Dark, light. How do we choose each day? Most of our lives are a combination of dark and light. Perhaps blinking keeps us in the middle...keeping us from drowning in the dark or burning up in the light. Nature teaches us so much.
I am not a loyal blogger...sorry. I just love that I have friends that look forward to my updates...you would think with so much time I would be better...best of intentions...my apologies. I have friends in Marietta whose elderly father just went from GBS to CIDP...they were reading my blog to him last week...I do hope it soothed him some and I pray he is getting great treatment and he gets well!
June/July. The last month has been super positive. I had another round of treatments with no adverse reactions. I am improving and getting stronger. My visit July 12th with my neurologist was super. I had not seen him for three months so he was pleased. As always Dr. Arce took his time with us and we always feel like we are the only ones that exist in his office. My arms are definitely improved and he thinks I could have complete (or as complete as it may get) by my next visit in October. My thighs are improved but still not much of anything below my knees. We are going to continue IVig and keep working to heal. He cannot give us any prediction on possible residuals/permanent nerve damage. All to be known down the road. His staff are wonderful and never fail to ask how we are...going out the door, Dr. Arce said it was nice to see me smile!
I can pedal six minutes, can lift my legs, pull them up and a few other movements I could not do just two months ago. YAHHOOO!!! We are getting there and we are so blessed. Our families and friends have never waned and continue to support us in many ways. Our son takes me to the farmer's market on Saturdays or my girlfriends bring me all my favorites. Wonderful meals and fattening desserts continue...wow!!! I ride in our golf cart on Friday evenings as we join our golf pals...my coaching skills leave a bit to be desired though. Our flowers look great (Tony says it's all his touch...whatever!!!). Many positives to be thankful for each and every day. Life is twisty but I would not trade mine.
We have much to look forward to in the coming years and we plan to live life to the fullest...being present and loving like there's no tomorrow...because, really, there isn't tomorrow.
By the way, since "the trial" is over, daytime tv is back to sucking...on a good tv note...True Blood, Weeds and The Big C are going strong!!!
Love, hugs and peace.
Wednesday, July 20, 2011
Tuesday, June 14, 2011
More May Showers...Bring...
I believe it rained close to every day in May!!! I love to work outside, get in the dirt and plant my pots..so, the frustration was growing because I could not be outside. We hired a young man to clean the beds, edge, mulch, power wash and more...he did a great job and my pots awaited plantings.
The first week of May brought two more IVig treatments. I did just fine...again! The treatments, we believe, are helping to stabilize me...yahoo!!! And, this time, we got the iv in one stick...ahhh...they lock it so I can go home with it for the next day's treatment.
May 6th was the day I went to OU's physical therapy class so the group could present my case to the class. There were about 30 students and a few teachers. My group had already discussed the medical details with the class before I arrived so we moved right in to some pt demos. We did some transfers from the chair to the "bench" and they taught me how to shift my weight to make the transfers easier. The students were concerned about my level of fatigue and were quite conscientious of how much we were doing. Then they strapped me into this hoist...I felt like I was going sky diving...the hoist is designed to safely lift one so that standing is possible. There is no humility in my condition! They had me move my feet (as much as I could) and then had me "guess" where my feet were in relation to my body. I had no idea as I cannot feel them. But, I managed to stand for about six minutes in this contraption.
These kids paid attention when they were at my house as they had me scooping dirt and planting seeds (testing my hand strength/dexterity). I got to take these plantings home, and yes, they are growing! I also tried to pedal on bike pedals that are on the ground. We were all impressed that I could do it (very short time). I hope the class learned something from me...most of them will rarely if ever deal with a CIDP patient. At the end of class they presented me with a beautiful gerber daisy, a "grabber" and lots of thank-yous. The students that worked with me came back to the house the next week and followed up on some exercises. Awesome group and a rewarding experience for me. I ordered a peddler for home and am up to four minutes a day...
Mother's Day weekend. My sweet Tony took me to a huge greenhouse about 45 minutes south...in the Durango which he had to lift me up in...we did it! He wheeled me around, allowed me to pick and choose what I wanted. We loaded up, unloaded at home and continued on to a few other places in Athens...he was a gem! On Sunday, he helped me plant some pots. I could do most everything as long as it was on the table...he did the big plants...never did I think I'd see it...LOL!!! I even gave him a lesson on deadheading...guess what he does every few days now...my arms/hands were quite tired and sore the next day but well worth it!
May showers were actually good to me. I found I was beginning to get stronger. I started to do a few small things I could not do before...unscrew the toothpaste, put my bra/shirt on by myself, plant a bit...small things we all take for granted...progress for me. My parents were coming to our house for Memorial Day weekend (driving north from Florida for the summer). I was so excited to see them and I know they were anxious to visit with us. My mom helped me get some summer clothes out, cleaned some closets/drawers for me and was an all-around help. Tony and dad golfed and Memorial Day allowed all of us, including Anthony, to play in a scramble. I rode and coached although my team was not very coachable! We had a great time. Mom and dad are welcome any time...except...they have to turn down the tvs...(both are going deaf...ugh!!!)
I had two more IVig treatments right after the holiday. This was brought me three iv sticks with some attractive bruising...aaaggghhh! None the less, no adverse reactions.
June and sunshine!!! I am on the upswing...it is still going to be some time as I am still unable to walk, but progress is happening each week. Sometimes I pay for it in fatigue but I have to have hope and to keep trying. I stood on my walker for about a minute last week and that was a huge boost for us. Paul came by the house and he recognized my improvements although I did fall while trying to stand on the walker for him. Slow but sure!!! This week I seem to be tired so I have not tried my walker again.
The summer is here, students are gone and some pressure will be lifted off Tony. Anthony is in Columbus doing a paid internship (awesome!!!) so we hope to take a few road trips for dinner and such. I'm still practicing being present and accepting what my journey brings me and what I am learning...not always easy but my life is truly filled with joys. I have a long way to go yet...time and patience.
More later. Love, hugs and peace.
The first week of May brought two more IVig treatments. I did just fine...again! The treatments, we believe, are helping to stabilize me...yahoo!!! And, this time, we got the iv in one stick...ahhh...they lock it so I can go home with it for the next day's treatment.
May 6th was the day I went to OU's physical therapy class so the group could present my case to the class. There were about 30 students and a few teachers. My group had already discussed the medical details with the class before I arrived so we moved right in to some pt demos. We did some transfers from the chair to the "bench" and they taught me how to shift my weight to make the transfers easier. The students were concerned about my level of fatigue and were quite conscientious of how much we were doing. Then they strapped me into this hoist...I felt like I was going sky diving...the hoist is designed to safely lift one so that standing is possible. There is no humility in my condition! They had me move my feet (as much as I could) and then had me "guess" where my feet were in relation to my body. I had no idea as I cannot feel them. But, I managed to stand for about six minutes in this contraption.
These kids paid attention when they were at my house as they had me scooping dirt and planting seeds (testing my hand strength/dexterity). I got to take these plantings home, and yes, they are growing! I also tried to pedal on bike pedals that are on the ground. We were all impressed that I could do it (very short time). I hope the class learned something from me...most of them will rarely if ever deal with a CIDP patient. At the end of class they presented me with a beautiful gerber daisy, a "grabber" and lots of thank-yous. The students that worked with me came back to the house the next week and followed up on some exercises. Awesome group and a rewarding experience for me. I ordered a peddler for home and am up to four minutes a day...Mother's Day weekend. My sweet Tony took me to a huge greenhouse about 45 minutes south...in the Durango which he had to lift me up in...we did it! He wheeled me around, allowed me to pick and choose what I wanted. We loaded up, unloaded at home and continued on to a few other places in Athens...he was a gem! On Sunday, he helped me plant some pots. I could do most everything as long as it was on the table...he did the big plants...never did I think I'd see it...LOL!!! I even gave him a lesson on deadheading...guess what he does every few days now...my arms/hands were quite tired and sore the next day but well worth it!
May showers were actually good to me. I found I was beginning to get stronger. I started to do a few small things I could not do before...unscrew the toothpaste, put my bra/shirt on by myself, plant a bit...small things we all take for granted...progress for me. My parents were coming to our house for Memorial Day weekend (driving north from Florida for the summer). I was so excited to see them and I know they were anxious to visit with us. My mom helped me get some summer clothes out, cleaned some closets/drawers for me and was an all-around help. Tony and dad golfed and Memorial Day allowed all of us, including Anthony, to play in a scramble. I rode and coached although my team was not very coachable! We had a great time. Mom and dad are welcome any time...except...they have to turn down the tvs...(both are going deaf...ugh!!!)
I had two more IVig treatments right after the holiday. This was brought me three iv sticks with some attractive bruising...aaaggghhh! None the less, no adverse reactions.
June and sunshine!!! I am on the upswing...it is still going to be some time as I am still unable to walk, but progress is happening each week. Sometimes I pay for it in fatigue but I have to have hope and to keep trying. I stood on my walker for about a minute last week and that was a huge boost for us. Paul came by the house and he recognized my improvements although I did fall while trying to stand on the walker for him. Slow but sure!!! This week I seem to be tired so I have not tried my walker again.
The summer is here, students are gone and some pressure will be lifted off Tony. Anthony is in Columbus doing a paid internship (awesome!!!) so we hope to take a few road trips for dinner and such. I'm still practicing being present and accepting what my journey brings me and what I am learning...not always easy but my life is truly filled with joys. I have a long way to go yet...time and patience.
More later. Love, hugs and peace.
Tuesday, May 24, 2011
A Few Things I Have Learned and Am Learning...
1. Daytime tv sucks. News churns all day long.
2. Ellen, Oprah and me...bffs...Dr. Oz makes me crazy.
3. My family is the best...good times and bad.
4. I have the very, very best friends in the whole world...and they can cook!
5. I can live (sort of) with shaving once a week...in my chair by the sink.
6. My old dog's snoring is comforting when home alone.
7. There is a big difference in lonely and being alone.
8. The Twilight movie series is actually quite good.
9. I totally suck at Words with Friends and yet I still play.
10. It takes much practice to stay present in life.
11. I love Anderson Cooper...and...Steven Tyler!
12. I miss cooking.
13. I have faith in humanity.
14. Life is not neat and tidy.
15. Much of my bucket list revolves around food.
16. Nature teaches us so very much.
2. Ellen, Oprah and me...bffs...Dr. Oz makes me crazy.
3. My family is the best...good times and bad.
4. I have the very, very best friends in the whole world...and they can cook!5. I can live (sort of) with shaving once a week...in my chair by the sink.
6. My old dog's snoring is comforting when home alone.
7. There is a big difference in lonely and being alone.
8. The Twilight movie series is actually quite good.
9. I totally suck at Words with Friends and yet I still play.
10. It takes much practice to stay present in life.
11. I love Anderson Cooper...and...Steven Tyler!
12. I miss cooking.
13. I have faith in humanity.
14. Life is not neat and tidy.
15. Much of my bucket list revolves around food.
16. Nature teaches us so very much.
Monday, May 16, 2011
April Showers...
I have been remiss in updates...I apologize. Today I would like to get you caught up to current. Back from Florida and in to our daily routine...now a bit easier because of my fancy gadget allowing Tony some freedom. We also were now utilizing a gait belt to lift me, particularly when getting in and out of the car.
April 4th and 5th brought two more IVig treatments; nothing remarkable except having three iv sticks before the fourth successful one...ugh! The afternoon of the 5th was a delight as five of my agents from Jackson stopped at my house to see me! We laughed and talked some business...they just brighten my world and it was awesome to see them!
April 6th was my visit with Dr. Arce and the long-awaited EMG. Since I had one in August and then in December we were anxious to see how I was improving. I knew I had not gotten any worse since Dec/Jan and I felt some improvement in my forearms. I have to say (maybe, again) that I really like Dr. Arce...he takes his time, asks questions, laughs with us and generally cares. The EMG showed a slight improvement in my arms and absolutely nothing in my legs (totally expected). Our visit was productive...we agreed that the IVig was at the least stabilizing me and seemed to be working (slowly, of course)...prednisone was still only a last resort and we were not at that point (long-term use as I would need is very risky)...so, indefinite IVig treatments and back to see Dr. Arce July 12th. When I inquired about thoughts of going back to work he was quite adamant that he has no intention of releasing me any time soon...patience. Alrighty then!!! As I told Teri, I am lucky with Dr. Arce...as I read more many GBS/CIDP cases go undiagnosed or misdiagnosed...Dr. Arce called it the day I was in his office. No unnecessary doctors or tests...lucky!
And so, April was filled with fabulous friends visiting and bringing just as fabulous meals. Wow!!! I remained on the Women Raise the Roof (Habitat for Humanity) golf tournament committee and so spent lots of time on the phone raising money/sponsors. We held meetings at my house and the tournament was a success (April 30th)! Ask me about current events, Ellen, Oprah or Facebook/Twitter action...I can tell you...I did get an Ipad 2 in April and it is super cool (still learning). Anthony usually visited Friday afternoons and we could spend a little time chatting (me asking questions) and catching up (more questions)...We celebrated a great friend's 60th, joined Lori and her family for Easter and just generally tried to live our lives as best we could...
I took a break from physical therapy as my benefit is quite limited and there was not much else to do for me that I cannot do at home. While at pt in March I was asked to volunteer to be a case study for Ohio University pt students. I agreed as to help someone else through my CIDP would be welcome. There were six students plus their instructor, Michelle. We started with about a 45 minute phone interview in which I gave them detailed background and they asked questions. The next step was for them to come to the house and conduct a thorough assessment of my abilities, or lack thereof. The students came to our house April 26th. What a great bunch! They put me through the wringer but they also came away with a better understanding of our life at home. They were professional, polite, well-educated and fun! We laughed but worked hard. The visit was about an hour and a half. Next up...early May class presentation.
April showers. Understatement. I love to work outside, cut grass, garden etc but that was not going to happen this year. So, we hired a lawn service and a young man to work my flower beds/pots, power wash etc. Unfortunately, not much got done in April. Rain, rain, rain! Speaking of which...if you can visualize "my space"...my recliner sits in the corner between two windows. I love having the windows open (yes, with the heat or a/c on too...yes, I see the $$$ going out those windows)...typical decent morning in Athens, so my window is open...well, a storm with wild winds whips up and I am getting rained on in my chair...no way for me to shut the window...no umbrella and no poncho handy!!! Luckily, by the time I called Tony the storm was winding down...(please do not send rain gear...lol). We laughed and laughed about it....got to have a sense of humor!
April 4th and 5th brought two more IVig treatments; nothing remarkable except having three iv sticks before the fourth successful one...ugh! The afternoon of the 5th was a delight as five of my agents from Jackson stopped at my house to see me! We laughed and talked some business...they just brighten my world and it was awesome to see them!
April 6th was my visit with Dr. Arce and the long-awaited EMG. Since I had one in August and then in December we were anxious to see how I was improving. I knew I had not gotten any worse since Dec/Jan and I felt some improvement in my forearms. I have to say (maybe, again) that I really like Dr. Arce...he takes his time, asks questions, laughs with us and generally cares. The EMG showed a slight improvement in my arms and absolutely nothing in my legs (totally expected). Our visit was productive...we agreed that the IVig was at the least stabilizing me and seemed to be working (slowly, of course)...prednisone was still only a last resort and we were not at that point (long-term use as I would need is very risky)...so, indefinite IVig treatments and back to see Dr. Arce July 12th. When I inquired about thoughts of going back to work he was quite adamant that he has no intention of releasing me any time soon...patience. Alrighty then!!! As I told Teri, I am lucky with Dr. Arce...as I read more many GBS/CIDP cases go undiagnosed or misdiagnosed...Dr. Arce called it the day I was in his office. No unnecessary doctors or tests...lucky!
And so, April was filled with fabulous friends visiting and bringing just as fabulous meals. Wow!!! I remained on the Women Raise the Roof (Habitat for Humanity) golf tournament committee and so spent lots of time on the phone raising money/sponsors. We held meetings at my house and the tournament was a success (April 30th)! Ask me about current events, Ellen, Oprah or Facebook/Twitter action...I can tell you...I did get an Ipad 2 in April and it is super cool (still learning). Anthony usually visited Friday afternoons and we could spend a little time chatting (me asking questions) and catching up (more questions)...We celebrated a great friend's 60th, joined Lori and her family for Easter and just generally tried to live our lives as best we could...
Give up waiting as a state of mind. When you catch yourself slipping into waiting, snap out of it. Come into the present moment. Just be, and enjoy being. If you are present, there is never any need for you to wait for anything.
I took a break from physical therapy as my benefit is quite limited and there was not much else to do for me that I cannot do at home. While at pt in March I was asked to volunteer to be a case study for Ohio University pt students. I agreed as to help someone else through my CIDP would be welcome. There were six students plus their instructor, Michelle. We started with about a 45 minute phone interview in which I gave them detailed background and they asked questions. The next step was for them to come to the house and conduct a thorough assessment of my abilities, or lack thereof. The students came to our house April 26th. What a great bunch! They put me through the wringer but they also came away with a better understanding of our life at home. They were professional, polite, well-educated and fun! We laughed but worked hard. The visit was about an hour and a half. Next up...early May class presentation.
April showers. Understatement. I love to work outside, cut grass, garden etc but that was not going to happen this year. So, we hired a lawn service and a young man to work my flower beds/pots, power wash etc. Unfortunately, not much got done in April. Rain, rain, rain! Speaking of which...if you can visualize "my space"...my recliner sits in the corner between two windows. I love having the windows open (yes, with the heat or a/c on too...yes, I see the $$$ going out those windows)...typical decent morning in Athens, so my window is open...well, a storm with wild winds whips up and I am getting rained on in my chair...no way for me to shut the window...no umbrella and no poncho handy!!! Luckily, by the time I called Tony the storm was winding down...(please do not send rain gear...lol). We laughed and laughed about it....got to have a sense of humor!
Thursday, May 5, 2011
Finishing up the Winter
Mid February...six months since my original diagnosis. Time goes slow yet here we are at six months. Dr. Arce gave me six to 12 months recovery time when we thought it was GBS...so, even without CIDP, I was still only halfway....time and patience...ugh! My Feb. visit with Dr. Arce was fairly unremarkable; he was glad that after seven bags (treatments) of IVig so far I was tolerating it well.
We found ourselves planning days, errands, Tony's business responsibilities around my seemingly endless need to go to the bathroom...three hours was my limit...whew, some days! Fridays are his longest days so Anthony would finish up classes (or so he said...lol) and come out to the house to visit me. The first couple of times he had to help me in the bathroom were a bit horrifying for him, but eventually he got used to it...great young man!
The rest of February was spent doing some pt, reading, watching some tv and just biding my time. It seemed that I had a meltdown every 10 days or so...mostly it was out of frustration and was short lived. Tony was/is such a caring husband but he too would get frustrated and tired. I continued to read and practice my daily reflections for which I was so very thankful.
Our friends, as always, took such very, very good care of us. Joan suggested we start to utilize an online meal schedule to ease the coordination...great! I have never, ever experienced such incredible support from others...and I have had the wonderful fortune of getting to better know some of our friends. Often times, through misfortune, one finds other treasures. We have done just that in so many ways. I've even re-connected with a few high school friends. The thoughtful cards are stacked up...wow! How will we ever be able to express our love and appreciation?
The next big decision for me was whether to take official medical leave from work. My short-term disability was to run out Feb 22nd and there really was no way that I was going back to work any time soon. Luckily, or maybe some calculated thought years ago, I bought a long-term disability policy and made claim and took my leave. This was a very difficult decision for me as I have always loved my job and my co-workers but, for my health, I had to take the time to heal. I had serious concerns about permanently losing my job however I could not stress about it now; this was something out of my control.
March. Two more IVig treatments. No physical improvements but certainly no worse. My pt was once a week and I continued to work some exercises at home. Spring break tradition with Anthony, his buddies and my folks at their condo was around the corner. The only way we would/could go is if Tony and I were able to rent a ground-floor unit as there was no way we could handle the stress of steps. I knew Tony really needed a break and I sure felt like the walls were closing in around me...except for the occasional "wheel" through Kroger's my activities were quite limited...My mom did find us a unit a couple of buildings down and so off we went...
Anthony and his two buddies drove and stayed with my folks. Tony and I got a direct flight (airlines make it fairly easy for the disabled to travel). Our plan was to stay a week in Bonita Springs where we could enjoy break with my family and the boys, Tony could golf and I could enjoy some warm air and sunshine...if even from my wheelchair. So, the days were filled with some pool time (I could not get in but enjoyed it anyway), relaxing on the lanai, laughing with the boys (they drink a lot of beer!) and enjoying my parents and their lovely friends. The ground floor unit worked perfectly for us. The boys carried me in my chair up and down my parent's steps a few times so that we could have dinner...a bit scary but they did it...great guys!
As I said earlier, days/activities are planned around Tony getting me to the bathroom...this may be a case of too much info so feel free to skip this part...such was the case in Florida too. He wanted to golf as did the guys but the pressure to take care of me was stressful...so, after some "discussion", I relented to buy and try a female urinal (who knew such a thing existed???)...and, no I am not posting a picture! Well, it worked and it allowed everyone some freedom to enjoy their vacation. Humiliating? Yep. Necessary "sacrifice" on my part? Absolutely.
After the week in Bonita we spent time with Teri and Kenny Kerr in Lauderdale. They have a wonderfully perfect beach condo that is totally accessible for me. We relaxed by the pool, ate at all our favorite places, drank and had many laughs. The ocean is so calming and captivating...we even got to spend time with a co-worker and his family who rent a place down the street...awesome friends and a much needed respite for Tony and me.
We found ourselves planning days, errands, Tony's business responsibilities around my seemingly endless need to go to the bathroom...three hours was my limit...whew, some days! Fridays are his longest days so Anthony would finish up classes (or so he said...lol) and come out to the house to visit me. The first couple of times he had to help me in the bathroom were a bit horrifying for him, but eventually he got used to it...great young man!
The rest of February was spent doing some pt, reading, watching some tv and just biding my time. It seemed that I had a meltdown every 10 days or so...mostly it was out of frustration and was short lived. Tony was/is such a caring husband but he too would get frustrated and tired. I continued to read and practice my daily reflections for which I was so very thankful.
Our friends, as always, took such very, very good care of us. Joan suggested we start to utilize an online meal schedule to ease the coordination...great! I have never, ever experienced such incredible support from others...and I have had the wonderful fortune of getting to better know some of our friends. Often times, through misfortune, one finds other treasures. We have done just that in so many ways. I've even re-connected with a few high school friends. The thoughtful cards are stacked up...wow! How will we ever be able to express our love and appreciation?
The next big decision for me was whether to take official medical leave from work. My short-term disability was to run out Feb 22nd and there really was no way that I was going back to work any time soon. Luckily, or maybe some calculated thought years ago, I bought a long-term disability policy and made claim and took my leave. This was a very difficult decision for me as I have always loved my job and my co-workers but, for my health, I had to take the time to heal. I had serious concerns about permanently losing my job however I could not stress about it now; this was something out of my control.
March. Two more IVig treatments. No physical improvements but certainly no worse. My pt was once a week and I continued to work some exercises at home. Spring break tradition with Anthony, his buddies and my folks at their condo was around the corner. The only way we would/could go is if Tony and I were able to rent a ground-floor unit as there was no way we could handle the stress of steps. I knew Tony really needed a break and I sure felt like the walls were closing in around me...except for the occasional "wheel" through Kroger's my activities were quite limited...My mom did find us a unit a couple of buildings down and so off we went...
Anthony and his two buddies drove and stayed with my folks. Tony and I got a direct flight (airlines make it fairly easy for the disabled to travel). Our plan was to stay a week in Bonita Springs where we could enjoy break with my family and the boys, Tony could golf and I could enjoy some warm air and sunshine...if even from my wheelchair. So, the days were filled with some pool time (I could not get in but enjoyed it anyway), relaxing on the lanai, laughing with the boys (they drink a lot of beer!) and enjoying my parents and their lovely friends. The ground floor unit worked perfectly for us. The boys carried me in my chair up and down my parent's steps a few times so that we could have dinner...a bit scary but they did it...great guys!As I said earlier, days/activities are planned around Tony getting me to the bathroom...this may be a case of too much info so feel free to skip this part...such was the case in Florida too. He wanted to golf as did the guys but the pressure to take care of me was stressful...so, after some "discussion", I relented to buy and try a female urinal (who knew such a thing existed???)...and, no I am not posting a picture! Well, it worked and it allowed everyone some freedom to enjoy their vacation. Humiliating? Yep. Necessary "sacrifice" on my part? Absolutely.
Saturday, April 23, 2011
A Little Respite and Much Reality...
We arrived at my parent's, after a five-hour delay, around midnight. Quite a long day for me. I'm supposed to not allow my legs to dangle more than an hour so this day was a tiring challenge for me. Our next challenge was getting me up a flight of stairs in their condo. Mom watched from above (keep in mind that she had not seen me since Thanksgiving when I was somewhat walking with my cane)...Tony was on one side of me with an arm around my waist, me, with an arm around his neck and a hand on the banister and my dad behind me in case I fell. Whew...one step at a time while pulling up on the banister. We made it up to the top where I grabbed the handles of my walker and got to a chair. Unbeknownst to me...my mom went in her room and shed a few tears. The biggest issue with CIDP is that because the nerves are not firing to my muscles and they then weaken/fatigue, it takes me 10 times the energy to do something...recovery time is then lengthened too. So, we got settled in for the week...my mom helped to unpack us.
We really did not have much planned for our stay. Golf for Tony, pedi for me, pool time and truly rest in the warm air. I knew I could scoot on my butt down the steps but to come back up was hell...I needed assistance getting to the bathroom, off the potty and back to my chair (usually I was on the lanai or the den)...so, we planned accordingly. My mom could somewhat lift me and help but that was a bit much so Tony's excursions were a bit limited. Steps were once a day only. We figured out how to get me in the shower but it was a project (fortunately their condo and our home have large step-in showers).
Unfortunately, while the warmth certainly did my soul well, my body was failing. Even now with my walker I fell a few times (my knees just buckled and once that happened there was no way to adjust). Tony and I took this time to have some heart to heart chats. We knew it would not be long before I would be in a wheelchair. We made the disappointing decision to withdraw our offer on the condo and take our home off the market. The condo has many steps versus our raised ranch that would suit my needs at this point in our lives. It was the right decision though not what we wanted. Reality slap once again.
We got to visit with some great friends while there...and, again, people that had not seen me for some time (I had lost about 15 pounds so I think they were a bit surprised)...Teri Kerr, the Snyders and the Barrs. Loved catching up with them and soaking up their love! My parents were great, healthy and thrilled to see us. Tony and I would have loved to stay longer but we needed to get back home for my treatments, start pt and for the bar. So, back to Ohio snow and gray.
When we got home we ordered a new recliner for me, took our bathroom door off the hinges, hooked up a hand-held shower/bars and picked up a toilet seat riser (all Paul Mullins' suggestions). The intentions being to make it easier for me but mostly for Tony to lift me. January 29th. DeeDee Irwin came to the house and gave me a gentle, soothing massage. This was the last day my exhausted and weak legs would allow me to walk. I fell twice this day and it was horrible for Tony to get me back up. This was it and we knew the wheelchair was going to become our friend.
This was about the time I also realized how dependent I was now on Tony. We settled into a routine each day. He would get me out of bed to my wheelchair (by the way, we got a smaller transport chair when we realized the situation), to the bathroom and then to my recliner. That is four transfers for him in five minutes...agggghhh. He would bring me coffee, bagel etc. Showers are a project and tiring so it seemed every other day with a sponge bath otherwise. I could at least wash and brush my teeth (with some difficulty). Once my personal hygiene was sufficient Tony would dress me. We moved all of my make-up and hair products to my "sitting room". While I could still put on my make-up and fix my hair, it was a slow, tedious and frustrating project. But, I did it each day so as to feel good. Now, most of you know me quite well...how do you think I liked all of this? Again, I thank Eckhart Tolle and Mark Nepo for getting me mentally through each day. Say "yes" to the present moment. Surrender to what is. Say "yes" to life - and see how life suddenly starts working for you rather than against you.
Feb. 3rd and 4th were my IVig treatments and again everything went well. I tolerated the treatments and the staff at O'Bleness once again were awesome! I started pt Feb. 8th at a different place and I really liked the therapist. We decided twice a week for a few weeks and see how it went. It is important that I continue to rest/heal and not over do as to just wash out. Sam, my therapist, worked me pretty hard but I seemed to do okay. He showed me exercises/stretches to do at home. Tony and I did continue at home and Sam and I decided to go to once a week because there was only so much he could do with me. Hurts so good.
Well, fingers are tired...more later...hugs to you!!!
 |
| Beautiful rainbow as seen from mom and dad's lanai. |
Unfortunately, while the warmth certainly did my soul well, my body was failing. Even now with my walker I fell a few times (my knees just buckled and once that happened there was no way to adjust). Tony and I took this time to have some heart to heart chats. We knew it would not be long before I would be in a wheelchair. We made the disappointing decision to withdraw our offer on the condo and take our home off the market. The condo has many steps versus our raised ranch that would suit my needs at this point in our lives. It was the right decision though not what we wanted. Reality slap once again.
We got to visit with some great friends while there...and, again, people that had not seen me for some time (I had lost about 15 pounds so I think they were a bit surprised)...Teri Kerr, the Snyders and the Barrs. Loved catching up with them and soaking up their love! My parents were great, healthy and thrilled to see us. Tony and I would have loved to stay longer but we needed to get back home for my treatments, start pt and for the bar. So, back to Ohio snow and gray.
When we got home we ordered a new recliner for me, took our bathroom door off the hinges, hooked up a hand-held shower/bars and picked up a toilet seat riser (all Paul Mullins' suggestions). The intentions being to make it easier for me but mostly for Tony to lift me. January 29th. DeeDee Irwin came to the house and gave me a gentle, soothing massage. This was the last day my exhausted and weak legs would allow me to walk. I fell twice this day and it was horrible for Tony to get me back up. This was it and we knew the wheelchair was going to become our friend.
This was about the time I also realized how dependent I was now on Tony. We settled into a routine each day. He would get me out of bed to my wheelchair (by the way, we got a smaller transport chair when we realized the situation), to the bathroom and then to my recliner. That is four transfers for him in five minutes...agggghhh. He would bring me coffee, bagel etc. Showers are a project and tiring so it seemed every other day with a sponge bath otherwise. I could at least wash and brush my teeth (with some difficulty). Once my personal hygiene was sufficient Tony would dress me. We moved all of my make-up and hair products to my "sitting room". While I could still put on my make-up and fix my hair, it was a slow, tedious and frustrating project. But, I did it each day so as to feel good. Now, most of you know me quite well...how do you think I liked all of this? Again, I thank Eckhart Tolle and Mark Nepo for getting me mentally through each day. Say "yes" to the present moment. Surrender to what is. Say "yes" to life - and see how life suddenly starts working for you rather than against you.
Feb. 3rd and 4th were my IVig treatments and again everything went well. I tolerated the treatments and the staff at O'Bleness once again were awesome! I started pt Feb. 8th at a different place and I really liked the therapist. We decided twice a week for a few weeks and see how it went. It is important that I continue to rest/heal and not over do as to just wash out. Sam, my therapist, worked me pretty hard but I seemed to do okay. He showed me exercises/stretches to do at home. Tony and I did continue at home and Sam and I decided to go to once a week because there was only so much he could do with me. Hurts so good.
Well, fingers are tired...more later...hugs to you!!!
Saturday, April 16, 2011
New Year 2011
Well, who would ever think at 49 one's accessories would include a cane, walker and a wheelchair? Incredible how life can quickly change. The first week of January brought me five days of IVig treatments as recommended by my visit to Cleveland. Aggressive Ivig and physical therapy when I get stronger. To this point, I have lost quite a bit of muscle tone so it is probably a matter of time before my legs totally quit on me. I use my walker to get to the bathroom but I cannot get up by myself. I am becoming more and more dependent upon others. Ugh!!!
O'Bleness oncology department rocks! They took such good care of me. My veins are kind of weak for some reason so sometimes they would have to stick me two and three times for the iv. I did go home with the locked iv and that would help for another day. Mostly I read and watched tv during the three to four hours it takes. Tony would get me settled in and then pick me up. I tolerated the treatments with no adverse side affects...good thing!
Paul Mullins, a friend and physical therapist, came to the house to see how he could be of help. He had us switch the wheelchair arms around for better leverage, take the bathroom door off the hinges and strongly suggested we buy a firmer, higher seated recliner. My old recliner is "soupy" and a rocker making it tough to get me up. Paul also showed me a few exercises that would help me. Awesome!
Let me say here that I have a new respect for anyone that is disabled. Not only for daily needs but for the project it is to go anywhere. I suspect one just gets used to it but for us it was a frustrating challenge. We did get a handicap placard in December. While it is truly helpful and necessary for us it is absolutely aggravating to see someone in a red, cute sports car park in a handicap spot...pop out of the car and walk around the mall. When one is made aware of a necessity it is amazing what you see. Handicap bathroom stalls...all the way at the end of the bathroom. Lack of family restrooms. So, when we were going somewhere I limited my liquid intake as it was a struggle just to go to the bathroom.
It also was about this time that our wonderful, gracious friends began their meals on wheels campaign for us. All wanted to know what they could do to help us and with Tony running a business, a home and taking care of me, cooking was not really a priority. So, every few days someone would bring a meal (or three!!!). And, I mean a meal...pastas, veggies, roasts, soups...breads, salads...desserts!!! Absolutely, incredible friends and support. I had to lecture each about small portions. We had Wed girls' night at my house where I could be comfortable yet social. We will never be able to thank everyone for their generosity!
Tony and I decided since I was not able to work and was pretty much confined to my four walls that we would go to my parent's home in Florida. As long as we could get a direct flight (which we could not), a walker and a wheelchair (rented) we could make it work. My parent's condo is up a flight and a half of steps and we knew this would be a challenge to say the least. So, after my appointment with Dr. Arce Jan. 12th we flew to Florida. The biggest challenge at the airport was the lack of a family restroom in our terminal. Tony, out of necessity, just rolled me in to the ladies restroom (we tried to be sure it was empty if we could). Just got to do what you got to do...
More about our respite trip later!
O'Bleness oncology department rocks! They took such good care of me. My veins are kind of weak for some reason so sometimes they would have to stick me two and three times for the iv. I did go home with the locked iv and that would help for another day. Mostly I read and watched tv during the three to four hours it takes. Tony would get me settled in and then pick me up. I tolerated the treatments with no adverse side affects...good thing!
Paul Mullins, a friend and physical therapist, came to the house to see how he could be of help. He had us switch the wheelchair arms around for better leverage, take the bathroom door off the hinges and strongly suggested we buy a firmer, higher seated recliner. My old recliner is "soupy" and a rocker making it tough to get me up. Paul also showed me a few exercises that would help me. Awesome!
Let me say here that I have a new respect for anyone that is disabled. Not only for daily needs but for the project it is to go anywhere. I suspect one just gets used to it but for us it was a frustrating challenge. We did get a handicap placard in December. While it is truly helpful and necessary for us it is absolutely aggravating to see someone in a red, cute sports car park in a handicap spot...pop out of the car and walk around the mall. When one is made aware of a necessity it is amazing what you see. Handicap bathroom stalls...all the way at the end of the bathroom. Lack of family restrooms. So, when we were going somewhere I limited my liquid intake as it was a struggle just to go to the bathroom.
It also was about this time that our wonderful, gracious friends began their meals on wheels campaign for us. All wanted to know what they could do to help us and with Tony running a business, a home and taking care of me, cooking was not really a priority. So, every few days someone would bring a meal (or three!!!). And, I mean a meal...pastas, veggies, roasts, soups...breads, salads...desserts!!! Absolutely, incredible friends and support. I had to lecture each about small portions. We had Wed girls' night at my house where I could be comfortable yet social. We will never be able to thank everyone for their generosity!
Tony and I decided since I was not able to work and was pretty much confined to my four walls that we would go to my parent's home in Florida. As long as we could get a direct flight (which we could not), a walker and a wheelchair (rented) we could make it work. My parent's condo is up a flight and a half of steps and we knew this would be a challenge to say the least. So, after my appointment with Dr. Arce Jan. 12th we flew to Florida. The biggest challenge at the airport was the lack of a family restroom in our terminal. Tony, out of necessity, just rolled me in to the ladies restroom (we tried to be sure it was empty if we could). Just got to do what you got to do...
More about our respite trip later!
Thursday, April 7, 2011
End of the Year Adventures:
December 15th: Spinal tap in Dr. Arce's office at 9 am. The drive to Columbus was a nightmare with an accident around Canal Winchester. Many of you know how that usually turns out early in the am. Needless to say we were more than an hour late but fortunately the practitioner doing the procedure had an opening. My greatest fear right now was the idea of the spinal headache as I had experienced in August. I planned ahead and told work not to expect me, laundry was done etc...all I had to do was get home and lay in bed until I felt out of the woods (about 72 hours).
Her first question was "do you have trouble getting numb?"...not what I wanted to hear as I just came off a dentist appointment with numbing trouble (pretty common for me) (by the way, my wonderful dentist, Dr. Spero, gave me an awesome cane). She got out the high-level numbing potion and Tony got me on the table. I had to curl into a ball of sorts with Tony holding my legs so they would stay curled up. She gave me a couple shots to numb me and they seemed to work. So....keep in mind she is inserting this needle into my back and searching for my spinal sac totally by feel...no fluoroscope here! It seems that I have a bony spine as she was having a tough time maneuvering around it...fairly unnerving. She pulled the needle out. Another shot to be sure I was numb (there is no associated pain but one can feel the pressure as the needle moves around...sorry!). In she goes again from another angle and again she cannot get around my bony spine. AAAAGGGGHHHH!!!! This gal really was very nice and she does taps all the time. Did I want her to try again or did I want to go to Riverside under the fluoroscope? She stated she rarely has to go in a third time. I asked her what she would do. Riverside. Luckily, they got me in that afternoon so off we went.
Easy. Once we checked in, did blood work etc. the procedure itself took about 15 minutes. In the car, seat all the way back hoping and praying for no headache. I did lay as flat as I could for a couple of days and as each hour passed I believed I was going to be good to go. No headache!! Yahoo!! I hope I never have to do another tap again.
December 14th was my last day at my office. I ended up not going back. I was, for the most part, struggling to walk even with a cane. Teri brought over her little walker/buggy and that seemed to help me get to the kitchen/bathroom. Getting out of my chair and off the potty was becoming increasingly difficult because of muscle weakness/fatigue associated with CIDP. I chose my "house travels" carefully and my Iphone tucked in to my bra served as my "I've fallen and can't get up" device.
The Turmans shined up a wheelchair they had and brought it to the house. The Conways had a ramp for us to borrow. This would at least be easier to get me in and out of the house. This generous help was brought on by the fact that one evening after a Christmas party get-together with all my gals, my great friend, Joan, brought me home. We have one pretty good step from our garage to our house and in the past I usually had Tony behind me, cane in hand, and he kind of boosted me in to the house. Joan and I should have known better. We did just this but my legs were jello and I fell...would have been nice if I would have fallen in to the house but instead I fell half in and half on the step. Joan was horrified but all we could do was laugh. I cannot describe the next ten minutes but suffice it to say below zero temps are a great motivator. We tossed and rolled and laughed and finally got me in the hallway. Then what? Joan pulled me across the floor where we both sat on the floor against the couch until Tony got home. Awesome bonding. A reality slap.
Cleveland Clinic got me in to their neurology department on December 30th. The goal was a second opinion and to explore any other treatment options. We went the night before, stayed in a handicap hotel room and were ready to go for my 8:30 am appointment. Questions, questions and a very thorough exam (my weight had dropped by about 15 pounds...whew!) by two neurologists produced a concurring diagnosis of CIDP. These neurologists suggested an aggressive IVig regimen; five treatments in a row right after the holidays followed by two consecutive treatments each month through April. They too were against prednisone at this point and believed I stood a good chance of improvement with IVig, physical therapy and rest. We felt oddly good about our visit, the concurring opinion and treatment plan. At least we had a path to follow now.
Christmas was quiet but calm and peaceful. New Year's Eve was spent with some of our very great friends and a few toasts to a better 2011.
On a crazy side note:
Cleveland Clinic visit with blood tests: approx $3800
Per Ivig treatment: approx $6000-$8000 per (fluctuates depending upon cost of product)
Riverside for five days was about $22,000 (seems like a bargain)
Plus all the other miscellaneous testing/prodding
My family monthly health insurance premium: $875 (relatively low by insurance premiums)
The math is an eye-opener. We are thankful.
Her first question was "do you have trouble getting numb?"...not what I wanted to hear as I just came off a dentist appointment with numbing trouble (pretty common for me) (by the way, my wonderful dentist, Dr. Spero, gave me an awesome cane). She got out the high-level numbing potion and Tony got me on the table. I had to curl into a ball of sorts with Tony holding my legs so they would stay curled up. She gave me a couple shots to numb me and they seemed to work. So....keep in mind she is inserting this needle into my back and searching for my spinal sac totally by feel...no fluoroscope here! It seems that I have a bony spine as she was having a tough time maneuvering around it...fairly unnerving. She pulled the needle out. Another shot to be sure I was numb (there is no associated pain but one can feel the pressure as the needle moves around...sorry!). In she goes again from another angle and again she cannot get around my bony spine. AAAAGGGGHHHH!!!! This gal really was very nice and she does taps all the time. Did I want her to try again or did I want to go to Riverside under the fluoroscope? She stated she rarely has to go in a third time. I asked her what she would do. Riverside. Luckily, they got me in that afternoon so off we went.
Easy. Once we checked in, did blood work etc. the procedure itself took about 15 minutes. In the car, seat all the way back hoping and praying for no headache. I did lay as flat as I could for a couple of days and as each hour passed I believed I was going to be good to go. No headache!! Yahoo!! I hope I never have to do another tap again.
December 14th was my last day at my office. I ended up not going back. I was, for the most part, struggling to walk even with a cane. Teri brought over her little walker/buggy and that seemed to help me get to the kitchen/bathroom. Getting out of my chair and off the potty was becoming increasingly difficult because of muscle weakness/fatigue associated with CIDP. I chose my "house travels" carefully and my Iphone tucked in to my bra served as my "I've fallen and can't get up" device.
The Turmans shined up a wheelchair they had and brought it to the house. The Conways had a ramp for us to borrow. This would at least be easier to get me in and out of the house. This generous help was brought on by the fact that one evening after a Christmas party get-together with all my gals, my great friend, Joan, brought me home. We have one pretty good step from our garage to our house and in the past I usually had Tony behind me, cane in hand, and he kind of boosted me in to the house. Joan and I should have known better. We did just this but my legs were jello and I fell...would have been nice if I would have fallen in to the house but instead I fell half in and half on the step. Joan was horrified but all we could do was laugh. I cannot describe the next ten minutes but suffice it to say below zero temps are a great motivator. We tossed and rolled and laughed and finally got me in the hallway. Then what? Joan pulled me across the floor where we both sat on the floor against the couch until Tony got home. Awesome bonding. A reality slap.
Cleveland Clinic got me in to their neurology department on December 30th. The goal was a second opinion and to explore any other treatment options. We went the night before, stayed in a handicap hotel room and were ready to go for my 8:30 am appointment. Questions, questions and a very thorough exam (my weight had dropped by about 15 pounds...whew!) by two neurologists produced a concurring diagnosis of CIDP. These neurologists suggested an aggressive IVig regimen; five treatments in a row right after the holidays followed by two consecutive treatments each month through April. They too were against prednisone at this point and believed I stood a good chance of improvement with IVig, physical therapy and rest. We felt oddly good about our visit, the concurring opinion and treatment plan. At least we had a path to follow now.
Christmas was quiet but calm and peaceful. New Year's Eve was spent with some of our very great friends and a few toasts to a better 2011.
On a crazy side note:
Cleveland Clinic visit with blood tests: approx $3800
Per Ivig treatment: approx $6000-$8000 per (fluctuates depending upon cost of product)
Riverside for five days was about $22,000 (seems like a bargain)
Plus all the other miscellaneous testing/prodding
My family monthly health insurance premium: $875 (relatively low by insurance premiums)
The math is an eye-opener. We are thankful.
Friday, April 1, 2011
Reflections
Before I go much further this may be a good point to share part of how I have gotten through this crazy, unexpected journey.
I am not a fan of organized religion for many reasons. I am spiritual and I have my own personal belief system that works for me. A few years ago I heard of "The New Earth" by Eckhart Tolle...it sounded interesting and I was, at the time, searching for some understanding of life. I read, highlighted and absorbed Tolle's writing. I came to understand and connect with him and started to "practice" being Present in my life. Little did I know I was practicing for accepting my life as it is Now. And so:
1. We label moments as either "good" or "bad". Yet, the only moment we really ever truly have is now. Life itself is only now; the other "good" or "bad" moments only exist when we think about them. Honor the past. Plan for the future. Live now.
2. Do I want the present moment to be my friend or my enemy? I could choose to do battle with the moment...what is now...or I could accept it, lean in to it and live that moment. This takes practice as it is not natural to live now.
3. Life will give you whatever experience is most helpful for the evolution of your consciousness. I know this journey is what I needed to experience because it is happening at this moment.
4. If I want to be at peace I have to make peace with what is.
5. Wherever I am I am totally there. If it makes me unhappy I have three options...remove myself from the situation, change it or accept it totally. By choosing and accepting the consequences I have taken responsibility for my life.
Each day I read a passage or two from a couple of New Earth supplements. I also read Mark Nepo's The Book of Awakening...a new passage each day...his stories are so, so awesome...check him out! Practicing to live in the Now is tough work but it has really helped me get through the rough patches.
Friends and family. We cannot ever say enough or ever do enough for those that have so graciously gave of themselves. From prayers to meals to deliciously perfect brownies to medical equipment to therapy assistance to a shoulder to cry on...we could never have gotten through this journey without the love and outpouring of support...more on this at a later time.
Tony. Cream rises to the top. Yes, we do what we have to do. My husband has been here for me each and every day. We have had our share of frustrations but also some great laughs. Our marriage has been strengthened through adversity and we have learned much about ourselves and each other. Life is not neat and tidy (thanks for those few very true words, Jeanne!)....
I am not a fan of organized religion for many reasons. I am spiritual and I have my own personal belief system that works for me. A few years ago I heard of "The New Earth" by Eckhart Tolle...it sounded interesting and I was, at the time, searching for some understanding of life. I read, highlighted and absorbed Tolle's writing. I came to understand and connect with him and started to "practice" being Present in my life. Little did I know I was practicing for accepting my life as it is Now. And so:
1. We label moments as either "good" or "bad". Yet, the only moment we really ever truly have is now. Life itself is only now; the other "good" or "bad" moments only exist when we think about them. Honor the past. Plan for the future. Live now.
2. Do I want the present moment to be my friend or my enemy? I could choose to do battle with the moment...what is now...or I could accept it, lean in to it and live that moment. This takes practice as it is not natural to live now.
3. Life will give you whatever experience is most helpful for the evolution of your consciousness. I know this journey is what I needed to experience because it is happening at this moment.
4. If I want to be at peace I have to make peace with what is.
5. Wherever I am I am totally there. If it makes me unhappy I have three options...remove myself from the situation, change it or accept it totally. By choosing and accepting the consequences I have taken responsibility for my life.
Each day I read a passage or two from a couple of New Earth supplements. I also read Mark Nepo's The Book of Awakening...a new passage each day...his stories are so, so awesome...check him out! Practicing to live in the Now is tough work but it has really helped me get through the rough patches.
Friends and family. We cannot ever say enough or ever do enough for those that have so graciously gave of themselves. From prayers to meals to deliciously perfect brownies to medical equipment to therapy assistance to a shoulder to cry on...we could never have gotten through this journey without the love and outpouring of support...more on this at a later time.
Tony. Cream rises to the top. Yes, we do what we have to do. My husband has been here for me each and every day. We have had our share of frustrations but also some great laughs. Our marriage has been strengthened through adversity and we have learned much about ourselves and each other. Life is not neat and tidy (thanks for those few very true words, Jeanne!)....
Thursday, March 24, 2011
Thanksgiving and More...
Our family decided that we would celebrate Thanksgiving at our house this year as my parents planned to stay in Florida through the rest of the holiday season. I think my trip to Florida was my last true independent move. My legs/arms/muscles were weakening and the energy I had to exert to do anything normal was becoming exhausting for me. Tony got us two turkeys and all the fixings as we said we would do that but my mom/dad/sister would have to cook. My parents had not yet seen me since July (early symptoms) so they were somewhat nervous. Well, my dad was a great distraction because on their way up from Florida he tripped at a gas pump and broke his nose (thanks but sorry. dad)! At this point, I was still able to walk with cane, furniture and walls...but not well and not long. It was wonderful to have my mom/dad and sister and her family. Know me at all? Know I'm a bit of a control freak. So...I "bossed" around everyone...brine the turkey, peel the potatoes, roll the pie crust...yikes! The best was my mother complaining that my father was slow chopping the onions and they were too small...and...digging in all my "things"! I had to wobble back to my new tv room (thank you, Anthony for allowing me to dismantle your bedroom!) as I could not stand it one more second...just call me when it is ready! Thanksgiving was great but I knew that I was getting worse and I mark this as a turning point.
December 8th. WOW!!! I truly have the very best friends in the world. Cindy, Joan, Janis and Liz (Joni was sick) cooked a wonderful dinner for us AND decorated our tree, table and mantle. We laughed, ate and I was so, so touched. I am not sure what we would do without our family and friends!!!
Tony and I pretty much had settled on my diagnosis being changed to CIDP. I met all of the criteria and our discussion at our last visit to Dr. Arce leaned in that direction. Yes, we asked many questions...we made a list each visit of our questions and those of all who had their own. Once diagnosed, treatment for GBS/CIDP is relatively black and white. Because the demyelination is so varied person by person there is no standard timing/scheduling of IVig nor of recovery. Difficult for the patient to accept and the neurologist to treat. Our visit to Dr. Arce on December 9th was tough but expected. He, without tests, was fairly sure of the CIDP diagnosis. He scheduled me for another spinal tap (aaaaggghh) and a second opinion at Cleveland Clinic. The next, and somewhat final treatment, would be steroids. Dr. Arce wanted to try to avoid this as it would be long-term steroid use with many risks. Spinal tap scheduled for Dec. 15th and Cleveland Dec 30th. Another story for another day...
December 8th. WOW!!! I truly have the very best friends in the world. Cindy, Joan, Janis and Liz (Joni was sick) cooked a wonderful dinner for us AND decorated our tree, table and mantle. We laughed, ate and I was so, so touched. I am not sure what we would do without our family and friends!!!
Tony and I pretty much had settled on my diagnosis being changed to CIDP. I met all of the criteria and our discussion at our last visit to Dr. Arce leaned in that direction. Yes, we asked many questions...we made a list each visit of our questions and those of all who had their own. Once diagnosed, treatment for GBS/CIDP is relatively black and white. Because the demyelination is so varied person by person there is no standard timing/scheduling of IVig nor of recovery. Difficult for the patient to accept and the neurologist to treat. Our visit to Dr. Arce on December 9th was tough but expected. He, without tests, was fairly sure of the CIDP diagnosis. He scheduled me for another spinal tap (aaaaggghh) and a second opinion at Cleveland Clinic. The next, and somewhat final treatment, would be steroids. Dr. Arce wanted to try to avoid this as it would be long-term steroid use with many risks. Spinal tap scheduled for Dec. 15th and Cleveland Dec 30th. Another story for another day...
Saturday, March 19, 2011
Reality Brings Some Changes...
Let me just back pedal a moment. In early September when my symptoms were somewhat mild I did some shopping. I knew I would need some low heel/flat boots as my numbness and lack of balance were not a good combo for heels. Those of you that know me are howling right now because you know my love of boots...so any excuse to HAVE to buy a pair, or two (or four!!!)...and so I bought some awesome boots and a few pairs of very cool jeans.
Well, I got to wear each pair maybe once and the jeans still have the tags on today. Reality by mid-October was yoga pants/sweats and tennis shoes. I could not handle buttons nor could I get my own shoes on...so, Tony had to get my boots on when I did want to wear them. How do you think that went? LOL!!! I finally relented and even wore yoga/leggings and tennis shoes to the office.
Since I had given up driving each day was centered around Tony taking me to work, helping me up the steps and picking me up around noon; then home to rest. The gals at the office were awesome. They would get my coffee and Lucky Charms (they couldn't stand to watch me with a walking stick trying to get to my office and hot coffee). While going to work was an emotionally good thing it was physically draining much of the time.
November 4th. EMG at Dr. Arce's in Columbus. Simply stated an EMG shoots currents through nerves and the machine/doctor measures the time it takes to travel from a to b. It is a bit uncomfortable but not really painful. Dr. Arce was patient and explained what he was seeing and thinking along the way. Yes, I was worse in that I had places all along my leg that the current did not even get to point b...meaning the myelin had stripped off in sections (think of the rubber covering on a copper wire and stripping off that rubber coating).
Again, we discussed the possibility of CIDP and while Dr. Arce remained positive in early diagnosis/treatment, my symptoms were obviously getting worse. I was numb to my calves and past my wrists now. Walking was a strain even with my stick. We scheduled an IVig treatment for Nov. 9th. Again, I did my treatment at our local hospital but now I went to the oncology department. Wow! The gals in this department are incredible. Each of them is caring without being condescending...professional, yet fun. I truly cannot say enough about what they do every day. My treatment was about four hours and I just read and watched some tv. Fairly easy process this time.
Before I realized I would be declining and a burden to those around me (I know...my family and friends would whack me for that thought) I had scheduled a girls' trip to Ft. Lauderdale. Teri, Lori, Dawn and Penny. They insisted I go and I knew Lori would help me as she was used to it every day at the office. November 11th was my first time in a wheelchair but I had to do so as walking through an airport would have been impossible. We had a few laughs and managed to make the best of my situation. The trip was much needed for me and it gave Tony a break. The gals were so patient, Lori helped me when I needed it, we drove instead of walked and they even got me in the pool a bit. Great time with great friends.
Well, I got to wear each pair maybe once and the jeans still have the tags on today. Reality by mid-October was yoga pants/sweats and tennis shoes. I could not handle buttons nor could I get my own shoes on...so, Tony had to get my boots on when I did want to wear them. How do you think that went? LOL!!! I finally relented and even wore yoga/leggings and tennis shoes to the office.
Since I had given up driving each day was centered around Tony taking me to work, helping me up the steps and picking me up around noon; then home to rest. The gals at the office were awesome. They would get my coffee and Lucky Charms (they couldn't stand to watch me with a walking stick trying to get to my office and hot coffee). While going to work was an emotionally good thing it was physically draining much of the time.
November 4th. EMG at Dr. Arce's in Columbus. Simply stated an EMG shoots currents through nerves and the machine/doctor measures the time it takes to travel from a to b. It is a bit uncomfortable but not really painful. Dr. Arce was patient and explained what he was seeing and thinking along the way. Yes, I was worse in that I had places all along my leg that the current did not even get to point b...meaning the myelin had stripped off in sections (think of the rubber covering on a copper wire and stripping off that rubber coating).
Again, we discussed the possibility of CIDP and while Dr. Arce remained positive in early diagnosis/treatment, my symptoms were obviously getting worse. I was numb to my calves and past my wrists now. Walking was a strain even with my stick. We scheduled an IVig treatment for Nov. 9th. Again, I did my treatment at our local hospital but now I went to the oncology department. Wow! The gals in this department are incredible. Each of them is caring without being condescending...professional, yet fun. I truly cannot say enough about what they do every day. My treatment was about four hours and I just read and watched some tv. Fairly easy process this time.
 |
| A little tap of my stick...LOL |
Monday, March 14, 2011
Fall...A Different Meaning
In late Sept I tried a week of full-time work but by the end of the week my body was exhausted and telling me to listen up! So, back to part-time. My schedule was 8:00 to about noon and my afternoons were spent sitting outside for a bit and then sleeping for a bit. My symptoms were increasing now. The numbness/tingliness had crept up to mid-calf and to about my wrists. It feels like when your hand/foot falls asleep...although that you can shake out, my extremities felt that way 24/7. I could still walk without assistance but developed a Frankenstein-like gait. Because of the numbness/sensory and reflex loss I could not tell where my feet were so I was slow and off balance. I know I scared a few people but I am stubborn and insisted on "being fine". The stairs at work were a challenge but I took them slow and deliberate. As long as I could use the walls or furniture as guides...I was fine! I could not walk far and getting through Kroger's felt like running a marathon. Yes, I was still driving.
Teri and Lori were insisting that I go to a cane and when Teri brought me "walking sticks" (like ski poles) I relented and started to use one. I had to admit it helped me balance a bit. About mid-October is when "fall" became a verb. Because of balance issues and extreme muscle fatigue I took a couple of tumbles...nothing major but I knew my body was giving out. Therapy was not really helpful at this point but I continued. I could still stand in the shower but not for very long. Yes, I was still driving.
October at OU means Homecoming. I think this is about the time the hard facts really hit me. Tony dropped me and my "walking stick" at Court Street Coffee. As I sat on the porch it seemed as though I was watching life go by. None of us realizes how fortunate we are and what simple things we take for granted. It all hit me that sunny, chilly fall morning. My pals found me and helped me to the spot where we love to watch the parade. After the festivities Tony came back around to pick me up. While I appreciated the beautiful day I felt a loss of sorts.
At this same time, Tony and I made the huge decision to put an offer on a condo at our Country Club and begin to downsize and simplify our life. Needless to say our son was not thrilled. The offer was contingent upon us selling our current home. And so that process began with high hopes.
October 24th. Interesting day. I went to Penny Tope's gorgeous cabin to have my cards read. I have never done so but I do believe there is certain energy that can be reigned in by us. I cannot now remember all that transpired but I do recall two cards that turned up during my session. They were both "spilled cup" cards. These cards indicate a sense of loss yet the cloaked figure is not looking behind at the two remaining cups that are still standing. Hope. Optimism. Interesting. http://www.keen.com/documents/works/articles/tarot/five-of-cups-tarot-card.asp
This day was also the day I gave up driving, thus my independence. I had a very difficult time getting to my car and getting out of the cabin's driveway. I knew it was time. While I was upset I knew it was the right decision for safety reasons. Alas...Tony's Taxi was born!
I had an appointment with Dr. Arce on the 27th. It was quite obvious that my condition had deteriorated and we started to talk about more IVig treatments and the possibility of CIDP (chronic inflammatory demyelinating polyneuropathy) which is basically chronic GBS. We scheduled another EMG for early November to be conducted by Dr. Arce.
Wednesday, March 9, 2011
In the Beginning...Home
I have received great feedback from my blog. I am thrilled that you are appreciative but now the pressure is on...whew!!! Really, thank you for reading, for your thoughts and for caring.
Saturday Aug. 21st. We got home late in the day and my guys put me right in bed. I don't remember much but I am sure I slept better in my own bed.
Sunday Aug 22nd. Still have the spinal headache but trudged to O'Bleness for my fourth treatment. Since the oncology/infusion department is not open on the weekends I had to go to the third floor regular section. The nurses were very nice but really did not know much about administering IVig. Three sticks to get my iv in but the plan was to allow me to leave it in for the next day. The pharmacist had to come up and assist with the math problem based on my weight. The nurse did not initially "turn on" my drip and that went unnoticed for about two hours. Not a great start but I had some good Oxy so not sure I cared. Monday's treatment went smoother and I was relieved to be done. IVig stays in one's system for four to six weeks and basically protects the
My headaches finally went away for good that Wednesday morning. I could sit up, eat and feel human again. At this point I took some time off of work and activated my short-term disability policy. My intention was to go back to work after Labor Day. My office took the reins and worked diligently to keep things running smooth. Thank the Lord for my very good friend and co-worker Lori as she took the lead. And, so I spent the next couple of weeks trying to allow my body to de-stress, heal and I did a lot of research.
I knew that I was very lucky in that my symptoms were mild in comparison to many GBS patients. I knew that we caught it and treated it early. The hope was that I would begin to get feeling back in my feet and hands within six months or so but it could be a year. There also was discussion that the symptoms (numb, tingly, sensory loss, muscle fatigue and loss of reflexes) could worsen before getting better. This syndrome is rare and it affects every person differently thus making "standard treatment" a tough call. So, as time ticked by I continued to be positive, count my blessings and generally remain strong. The symptoms had started to creep up to a bit above my ankles and past my wrists. Dr. Arce was not real concerned as we still knew early treatment was our best hope. Because there is no cure for GBS there is no "daily" treatment. Time. Time. Time. Oh, and patience.
I was having trouble walking and so I was pretty slow and unsteady. I decided to go back to work as planned but part-time. My doctor still wanted me to have plenty of rest and no stress. Driving was do-able and going up steps was slow but okay. Lori was a huge help to me, keeping a watchful eye and asking lots of medical questions. The month of September did not bring about a whole lot of change one way or the other. I did begin some physical therapy to help with balance and gait. Some days were good and others not so...my muscles easily fatigued and left me quite weak.
We continued to hope that the symptoms would subside soon. Our family and friends were so, so supportive and, of course, concerned. There were offers of food, canes etc but at this point I was still feeling decent enough to do a few things around the house and remain independent.
Monday, March 7, 2011
In the Beginning...Day Four and more
Aug 19th. I think I've screwed up my count of days. Sorry. This will be a long entry as I would like to get through my stay at Riverside.
Rise and shine to another day of horrible headaches. Second round of IVig and thank the Lord that I had no adverse reactions to the first treatment. The plan was for me to stay at Riverside for all five treatments which would mean a release on Monday. Besides the debilitating headaches I really saw no reason to stay if I could finish the treatments in Athens. The doctors wanted to get me through this second round and be sure I was tolerating it.
Dr. Arce came to see me late Thursday afternoon and told me he would not release me with the severe headache. Did I want to do a blood patch? I told him that I would consider it...tomorrow. In the meantime, a case manager was working with O'Bleness to see if I could finish my treatments there Sunday/Monday (outpatient).
That evening I felt well enough for Tony to help me get a shower...a little slice of heaven. Short lived as it was though. At least I felt a bit better as I downed my pain meds for the night.
Aug. 20th. My headaches were just as bad as day one so I relented on the blood patch. They decided to do my IVig first and scheduled my patch for late in the day. The blood patch was done the same way as the spinal tap instead using a vial of my own blood and placing it into the leaking hole and hoping it coagulates and plugs it up. For some reason the department they did this in was not "the basement". It was high-tech and looked brand new to me. Once again the staff was awesome and even fun! The procedure took about 15 minutes and then I was to lay flat for five hours. Really? You are talking to a woman that has lower back issues, is tired of lying flat and is generally going insane. But, we will do so!
By the second hour (it was about 8 pm by now) I was in so much back pain that I was in tears. I begged my nurse to just roll me on my side for some relief. That worked for a bit. I ate some ice cream while flat (getting good at this) and waited for the clock to tick away. At some point my nurse (savior) gave me an injection of demerol or some other very lovely pain med and I slept for quite awhile.
As long as I felt okay on Saturday the docs would order another IVig and release me. O'Bleness was able to administer my last two treatments. Yahoo!!!
Aug. 21st. I cannot believe I was inpatient these days. Totally unexpected. With so many GBS patients ending up on a vent and temporarily paralyzed I believe Dr. Arce made the best decision for me. If you read about GBS many people have a difficult time being diagnosed. Dr. Arce called it correctly during my initial visit with him.
No, my headaches were not gone. But hell or high water I was going home. The blood patch should begin to have its affects but I wasn't feeling so. They got my IVig started early. The neurologists came to see me, talk about follow up and release me.
Tony and Anthony got me in a wheelchair, I said my "good-byes" and down the elevator we went. I could ride in the front with the seat all the way back. I think it odd to leave the hospital feeling worse than when I entered it. Home to the comfort of my own bed. At this point, headaches were, at times, unbearable (blood patch not quite successful in my eyes) and my feet and hands were still numb and tingly (kind of secondary concern for me). Sleep and plans to go to O'Bleness Sunday for my next treatment.
Rise and shine to another day of horrible headaches. Second round of IVig and thank the Lord that I had no adverse reactions to the first treatment. The plan was for me to stay at Riverside for all five treatments which would mean a release on Monday. Besides the debilitating headaches I really saw no reason to stay if I could finish the treatments in Athens. The doctors wanted to get me through this second round and be sure I was tolerating it.
Dr. Arce came to see me late Thursday afternoon and told me he would not release me with the severe headache. Did I want to do a blood patch? I told him that I would consider it...tomorrow. In the meantime, a case manager was working with O'Bleness to see if I could finish my treatments there Sunday/Monday (outpatient).
That evening I felt well enough for Tony to help me get a shower...a little slice of heaven. Short lived as it was though. At least I felt a bit better as I downed my pain meds for the night.
Aug. 20th. My headaches were just as bad as day one so I relented on the blood patch. They decided to do my IVig first and scheduled my patch for late in the day. The blood patch was done the same way as the spinal tap instead using a vial of my own blood and placing it into the leaking hole and hoping it coagulates and plugs it up. For some reason the department they did this in was not "the basement". It was high-tech and looked brand new to me. Once again the staff was awesome and even fun! The procedure took about 15 minutes and then I was to lay flat for five hours. Really? You are talking to a woman that has lower back issues, is tired of lying flat and is generally going insane. But, we will do so!
By the second hour (it was about 8 pm by now) I was in so much back pain that I was in tears. I begged my nurse to just roll me on my side for some relief. That worked for a bit. I ate some ice cream while flat (getting good at this) and waited for the clock to tick away. At some point my nurse (savior) gave me an injection of demerol or some other very lovely pain med and I slept for quite awhile.
As long as I felt okay on Saturday the docs would order another IVig and release me. O'Bleness was able to administer my last two treatments. Yahoo!!!
Aug. 21st. I cannot believe I was inpatient these days. Totally unexpected. With so many GBS patients ending up on a vent and temporarily paralyzed I believe Dr. Arce made the best decision for me. If you read about GBS many people have a difficult time being diagnosed. Dr. Arce called it correctly during my initial visit with him.
No, my headaches were not gone. But hell or high water I was going home. The blood patch should begin to have its affects but I wasn't feeling so. They got my IVig started early. The neurologists came to see me, talk about follow up and release me.
Tony and Anthony got me in a wheelchair, I said my "good-byes" and down the elevator we went. I could ride in the front with the seat all the way back. I think it odd to leave the hospital feeling worse than when I entered it. Home to the comfort of my own bed. At this point, headaches were, at times, unbearable (blood patch not quite successful in my eyes) and my feet and hands were still numb and tingly (kind of secondary concern for me). Sleep and plans to go to O'Bleness Sunday for my next treatment.
Saturday, March 5, 2011
In the Beginning...Day Three
Cheryl Sylvester. 1/10/62. Standard opening every time a nurse came in my room to either check my vitals or administer meds. At least by the third morning the request for "my story" had diminished. Awake, night pain meds worn off and the thought of having to sit up/walk to pee brought out the bedside potty. Have I mentioned I now have an IV in each arm? One for drawing blood and anything else that needs to go in and one for the upcoming IVig (has to remain void of any other substances). The spinal headache made me forget about the GBS diagnosis. I have had 24 hrs of back labor followed by a c-section, two dislocated shoulders and gall bladder attacks...these were nothing in comparison. Cold compresses. Darkness. Quiet. Caffeine IV drip (ever hear of that?) helped a bit. So, a spinal headache occurs because the spinal fluid that constantly circulates is leaking from where they punctured. The doctors started to discuss doing a blood patch where they use one's own blood to patch the leaky hole. Right...next topic.
IVig. A blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) extracted from the plasma of over one thousand blood donors (wikipedia). $$$$. Five days in a row is standard protocol for this initial treatment. The dosage and drip time is based on one's weight. The major risks are allergic reaction and kidney problems so they start a slow drip, monitor vitals every 30 minutes, and crank up the drip as long as all goes well. Needless to say the first treatment took about five hours. Not that I cared.
My great friend, Teri, visited me and brought me ice cream which I could eat while lying flat, cold compress in place and eyes closed. She got me on the potty too! Friends. She also went shopping for me (which she despises) as I needed some pjs (those of you that know me know why). The Barrs visited that evening and I could actually sit up for a time. Tony and Anthony of course were by my side each evening. Bring on the pain meds.
The neurology team continued to see me two or three times each day. I cannot say enough about them and the entire staff at Riverside....even Vera who answered my call button. By this time I gave up on "how did I get this?" as I did not have any virus immediately preceding my symptoms nor any of the other possible ways that trigger GBS. By the way, easier for you to Google GBS than for me to try to explain it.
Sleeping was so-so but at least I had my own room and my IPhone with lots of music. Pain meds and a sleeping aid helped.
IVig. A blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) extracted from the plasma of over one thousand blood donors (wikipedia). $$$$. Five days in a row is standard protocol for this initial treatment. The dosage and drip time is based on one's weight. The major risks are allergic reaction and kidney problems so they start a slow drip, monitor vitals every 30 minutes, and crank up the drip as long as all goes well. Needless to say the first treatment took about five hours. Not that I cared.
My great friend, Teri, visited me and brought me ice cream which I could eat while lying flat, cold compress in place and eyes closed. She got me on the potty too! Friends. She also went shopping for me (which she despises) as I needed some pjs (those of you that know me know why). The Barrs visited that evening and I could actually sit up for a time. Tony and Anthony of course were by my side each evening. Bring on the pain meds.
The neurology team continued to see me two or three times each day. I cannot say enough about them and the entire staff at Riverside....even Vera who answered my call button. By this time I gave up on "how did I get this?" as I did not have any virus immediately preceding my symptoms nor any of the other possible ways that trigger GBS. By the way, easier for you to Google GBS than for me to try to explain it.
Sleeping was so-so but at least I had my own room and my IPhone with lots of music. Pain meds and a sleeping aid helped.
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