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!
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