Everything you wanted to know about Catheters, but were afraid to ask!
Friday, November 30, 2012
Wednesday, November 28, 2012
UPDATED IC AWARENESS VIDEO!
Since I created my original IC Awareness video, more has happened and I decided to make a few tweaks and update it a little and re-post it. It's been awhile since I created it and thought some of you might not have seen it and if you have, might find some inspiration in seeing it again. I hope you all like it.
Tuesday, November 27, 2012
VOICES OF HOPE!
If you’re looking for a little inspiration to help get you
through some tough times, look no further than the ICA website’s page, the ICA “Voices
of Hope Blog”. This page is devoted to
stories submitted by IC patients of their struggles with IC but how they have
managed to focus on the positive things in their lives, what they have to be
grateful for and coping strategies to help them fight their IC. I find this
page to be a great source of inspiration. I would like to encourage others to
submit your stories of hope, strength and courage to the ICA as well. There can
never be enough stories to help us all keep fighting our IC battle every
day. I find these stories inspiring and
very helpful to me. It puts me in a different mindset. So much of living with
chronic pain and illness can be helped with learning coping strategies; working
with a therapist and hearing others tell their stories.
If you have a story to tell that you feel could help another
IC patient, think about submitting it to the ICA Voices of Hope Blog. Your
story could very well be the story that helps another IC patient. If you’ve
been helped by anyone in you IC struggle, think about “paying it forward” and
share your story; you just might help someone else with IC. Pay it forward;
tell your story of successes, no matter how big or small. You never know what
kind of impact you can have another person!
Monday, November 26, 2012
The Battle Continues!
If you've been following my Blog, you know I have been battling chronic UTI's due to severe retention which requires I self-catheterize. Both of these things make me susceptible to infection and I'm on antibiotics as I type this for UTI #14 this year. It's been very frustrating for me, but also for my doctor and his nurse as well. They want to help me, but everything we have tried has failed to prevent me from getting these repeated UTI's.
But what I love about my doctor is his never give up the fight attitude. He is always looking for ways to help me and has never once told me there was nothing more he could do for me - in 11 years he has never given up!
One of my challenges is that I can't take anything for pain; I'm allergic to absolutely everything. But, for me, we have found an instillation cocktail that I love and before all these infections, I was even doing them myself at home. They really help my pain and so I've been going to the doctor to get them since this infection issue came up. So, my doctor's latest recommendation to try to fight off these chronic UTI's is to add Gentamicin to my instillations. Gentamicin belongs to a class of drugs known as aminoglycoside antibiotics. It works by stopping the growth of bacteria. I just got home from getting my second instillation with the Gentamicin in it. I currently have an infection and I am taking Ampicillin for it, but the doctor wanted me to go ahead with the special cocktail and I am game. I have scheduled a series of instillations over the next few weeks and am hopeful this will break the cycle of infections. The one I have now I got before I began these instilaltions, so I figure this one doesn't count.
So, full speed ahead with this new treatment plan. I am still taking the high dose of Probiotics and plan to keep up with that for the long term. I am willing to try new things and my doctor is always working to find treatments we haven't tried in an effort to help me. I will keep you all posted on how these work. I need to keep self-catheterizing because my retention is so severe, and if I don't, I'll get an infection and doing the cathing can also cause them. So it's like being between a rock and a hard place. But, I won't give up the fight and as the title of this post says, The Battle Continues!
May you all be well, peaceful and happy!
But what I love about my doctor is his never give up the fight attitude. He is always looking for ways to help me and has never once told me there was nothing more he could do for me - in 11 years he has never given up!
One of my challenges is that I can't take anything for pain; I'm allergic to absolutely everything. But, for me, we have found an instillation cocktail that I love and before all these infections, I was even doing them myself at home. They really help my pain and so I've been going to the doctor to get them since this infection issue came up. So, my doctor's latest recommendation to try to fight off these chronic UTI's is to add Gentamicin to my instillations. Gentamicin belongs to a class of drugs known as aminoglycoside antibiotics. It works by stopping the growth of bacteria. I just got home from getting my second instillation with the Gentamicin in it. I currently have an infection and I am taking Ampicillin for it, but the doctor wanted me to go ahead with the special cocktail and I am game. I have scheduled a series of instillations over the next few weeks and am hopeful this will break the cycle of infections. The one I have now I got before I began these instilaltions, so I figure this one doesn't count.
So, full speed ahead with this new treatment plan. I am still taking the high dose of Probiotics and plan to keep up with that for the long term. I am willing to try new things and my doctor is always working to find treatments we haven't tried in an effort to help me. I will keep you all posted on how these work. I need to keep self-catheterizing because my retention is so severe, and if I don't, I'll get an infection and doing the cathing can also cause them. So it's like being between a rock and a hard place. But, I won't give up the fight and as the title of this post says, The Battle Continues!
May you all be well, peaceful and happy!
Sunday, November 25, 2012
SUNDAY'S INSPIRATIONAL VIDEO QUOTE!
Check out today's Inspirational Video Quote for the day!
http://www.youtube.com/watch?v=un0huvMfOIo&feature=plcp
http://www.youtube.com/watch?v=un0huvMfOIo&feature=plcp
Saturday, November 24, 2012
NEW VIDEO-CHECK IT OUT!
A little video I made using my iPad. This is a test so let me know how it works and what you think.
WINTER IS COMING!
The weather is really changing and my bladder doesn't like it! It's pretty cold this morning (only 21 here in the northern Chicago suburbs this morning), but the sun is out and that's always a plus!
I know many IC patients find extreme weather really irritates their IC. I was always a winter girl! I loved winter sports and was an avid skier. I really miss skiing more than just about anything. I was never a good athlete growing up and when I discovered skiing and was actually good at it, I just loved it! My entire family skis, although for the first time in probably 30 years, no one can make a ski trip this Christmas; kind of sad. But I would even run in the cold weather and just basically preferred it over hot, humid summers.
Now, due to my IC, the weather that I can tolerate - or enjoy - has narrowed significantly. I would still go for a walk in the cold weather; heck I have all the gear from my skiing days, so I can dress for it. But these days, walks aren't even on my agenda. I am determined to get back to my walks at some point and I am just looking at this as a temporary set back. I love a sunny, cold day after a snowfall. It always made me so happy to walk in that kind of weather. I know, lots of you think I'm nuts. But I really hate the heat and humidity we get here in the Chicago area. This past summer was horrendous and I don't think we spent more than a few days outside; plants died, grass was brown. It was awful.
I guess the point is, that this year I haven't been able to do as much as I could in the past, even since getting IC and weather now plays more of a part in this since getting IC. This was a challenging year. It's been a struggle but I am working hard to improve my symptoms and hope to return to doing at least my walks around my neighborhood. We have beautiful trails, even with a porta-potty so I can take a potty break on my walks. I want to get back to that. So, that's what I want to focus on and will work toward in the new year.
We should all have goals to work toward, even with our IC struggles. I think it's important to have realistic goals to work toward, no matter how big or small. Set a goal and work toward it in whatever way you can. Work on your treatment plan with your doctor, work on your diet, do better at taking care of yourself by resting and not overdoing it during the holidays.
If, like me, you find the cold weather irritates your bladder, avoid it as much as you can. If you must go out in it, I strongly recommend silk underwear; it's thin but warm and can even be worn under jeans. I have tops and bottoms and even wear them around the house under my lounging pants and tops. I love my pretty afghan that I snuggle under, and of course, the ever popular heating pad on your bladder is a popular IC home "remedy". My IC Support Group Leader turned me on to drinking plain old hot water. I can't drink anything but water but was looking for something hot and she drinks it, so I thought - why not? I tried it and it's fine. It gives me something hot to drink and it feels so good when I drink it.
Winter is rapidly approaching. If you live in a cold weather climate and it bothers your IC, plan ahead, dress for it and try a few tricks to help you get through it. Buy some of those "hot packs" that are used for aches and pains and put one on your abdomen before you have to go out. Then take it off when you get where you are going.
Whatever you do, I hope everyone finds a way to cope with coming winter and cold weather!
Picture of me in my skiing days! Ahh, memories! Let it snow, let it snow, let it snow!!
I know many IC patients find extreme weather really irritates their IC. I was always a winter girl! I loved winter sports and was an avid skier. I really miss skiing more than just about anything. I was never a good athlete growing up and when I discovered skiing and was actually good at it, I just loved it! My entire family skis, although for the first time in probably 30 years, no one can make a ski trip this Christmas; kind of sad. But I would even run in the cold weather and just basically preferred it over hot, humid summers.
Now, due to my IC, the weather that I can tolerate - or enjoy - has narrowed significantly. I would still go for a walk in the cold weather; heck I have all the gear from my skiing days, so I can dress for it. But these days, walks aren't even on my agenda. I am determined to get back to my walks at some point and I am just looking at this as a temporary set back. I love a sunny, cold day after a snowfall. It always made me so happy to walk in that kind of weather. I know, lots of you think I'm nuts. But I really hate the heat and humidity we get here in the Chicago area. This past summer was horrendous and I don't think we spent more than a few days outside; plants died, grass was brown. It was awful.
I guess the point is, that this year I haven't been able to do as much as I could in the past, even since getting IC and weather now plays more of a part in this since getting IC. This was a challenging year. It's been a struggle but I am working hard to improve my symptoms and hope to return to doing at least my walks around my neighborhood. We have beautiful trails, even with a porta-potty so I can take a potty break on my walks. I want to get back to that. So, that's what I want to focus on and will work toward in the new year.
We should all have goals to work toward, even with our IC struggles. I think it's important to have realistic goals to work toward, no matter how big or small. Set a goal and work toward it in whatever way you can. Work on your treatment plan with your doctor, work on your diet, do better at taking care of yourself by resting and not overdoing it during the holidays.
If, like me, you find the cold weather irritates your bladder, avoid it as much as you can. If you must go out in it, I strongly recommend silk underwear; it's thin but warm and can even be worn under jeans. I have tops and bottoms and even wear them around the house under my lounging pants and tops. I love my pretty afghan that I snuggle under, and of course, the ever popular heating pad on your bladder is a popular IC home "remedy". My IC Support Group Leader turned me on to drinking plain old hot water. I can't drink anything but water but was looking for something hot and she drinks it, so I thought - why not? I tried it and it's fine. It gives me something hot to drink and it feels so good when I drink it.
Winter is rapidly approaching. If you live in a cold weather climate and it bothers your IC, plan ahead, dress for it and try a few tricks to help you get through it. Buy some of those "hot packs" that are used for aches and pains and put one on your abdomen before you have to go out. Then take it off when you get where you are going.
Whatever you do, I hope everyone finds a way to cope with coming winter and cold weather!
Picture of me in my skiing days! Ahh, memories! Let it snow, let it snow, let it snow!!
Friday, November 23, 2012
BLACK FRIDAY IS HERE!
I hope everyone had a wonderful Thanksgiving and that everyone was able to be with family and/or friends and relax and really remember why we celebrate Thanksgiving in the first place. I know I did. I am so grateful for my Mom and my family. It was a great day and we're doing it all over again on Sunday with my brothers and their families who could not be with us yesterday. It's always nice to spread the holiday out over several days.
As we all know, today is Black Friday and I would rather get root canal or (fill in the blank with a painful and unpleasant experience) than go shopping today! There is not one single thing on this earth that, even if given away for free, could get me to go out shopping on Black Friday. To me, it's like the worst idea in the world. But I know a lot of families have been doing it for years and it's a fun tradition that I just don't understand. If so, I hope you have fun. For those of you with IC, I hope you pace yourself, have an ICA Restroom Access card that you can use to get to a bathroom when you find the lines are long. Don't feel you have to spend the entire day out there like some shopping warrior. If you were after a few special things that were on special early, then go get them and go home. There's plenty of time to finish your Christmas shopping. As someone who worked two jobs for 3+ years, one of which was in a department store, I can assure you, there WILL be more sales. Today is a huge marketing ploy and, especially in this recovering economy, the stores will continue to offer deals the closer we get to Christmas.
I just hope all my IC friends can enjoy today, whatever your plans are. Remember not to overdo and send yourself into a flare. No deal on some gift is worth sending you into a flare. I know all I want for Christmas is time with my family and those I love. I have told everyone and will tell them again, that I want NOTHING for Christmas except a donation to my personal IC Fundraising Campaign. That is the greatest gift I could receive. So think about going to the ICA website and using their Fundraising tool to set up your own Fundraising Campaign and ask friends and family to make a donation to your Campaign. You'll get a web link and all they have to do is go to your page and make a donation. You'll get a list of names from the ICA so you know who to thank and you'll save your friends and family from figuring out what to get you, or save them from all the crowds at the mall. And they'll be directly helping you and all your IC friends. I'll post a link to the ICA page where you can set up your own Fundraising page.
Check out the links and think about making this your Christmas gift to yourself and everyone in the IC Community. You'll save your friends and family from having to stand in long lines, figure out what you'd like and possibly give you one more thing you don't need. All I have done to communicate about my Campaign is to use email and Facebook to let everyone know that I don't want presents and explain that what I really want is a donation to my Campaign. I provide a little information about IC and a link to the ICA website so people that might not know a lot can read about it. So far, since I set my page up last year, I have raised close to $2,000 that has gone directly to the "Imagine No IC" Campaign which funds research only and no money goes to administrative costs. You can specify this when you set up your page.
https://www.ichelp.org/sslpage.aspx?pid=1072
http://www.ichelp.org/document.doc?id=275
http://www.ichelp.org/Page.aspx?pid=1060
I hope everyone will give this serious consideration. So many of us talk about the need for funding and research and we have the ability to make an impact on these issues ourselves!
So on Black Friday, think about what you can do for yourself and your friends in the IC Community. Instead of shopping and standing in long lines, enduring crowds, why not set up your own IC Fundraising Campaign and help make this Christmas more meaningful to you and everyone suffering with IC! I hope we get more people involved in this fantastic fundraising idea for the ICA!
Here's a link to my personal fundraising page, so you can see what they look like once the ICA gets your form and sets up your page.
https://www.ichelp.org/sslpage.aspx?pid=1113
Whatever you do, I hope you enjoy yourself, take care of yourself and give yourself permission to not take on more than you can handle. Enjoy the holidays. It's not about stuff; remember it's about family and time together.
Let the holidays begin!
As we all know, today is Black Friday and I would rather get root canal or (fill in the blank with a painful and unpleasant experience) than go shopping today! There is not one single thing on this earth that, even if given away for free, could get me to go out shopping on Black Friday. To me, it's like the worst idea in the world. But I know a lot of families have been doing it for years and it's a fun tradition that I just don't understand. If so, I hope you have fun. For those of you with IC, I hope you pace yourself, have an ICA Restroom Access card that you can use to get to a bathroom when you find the lines are long. Don't feel you have to spend the entire day out there like some shopping warrior. If you were after a few special things that were on special early, then go get them and go home. There's plenty of time to finish your Christmas shopping. As someone who worked two jobs for 3+ years, one of which was in a department store, I can assure you, there WILL be more sales. Today is a huge marketing ploy and, especially in this recovering economy, the stores will continue to offer deals the closer we get to Christmas.
I just hope all my IC friends can enjoy today, whatever your plans are. Remember not to overdo and send yourself into a flare. No deal on some gift is worth sending you into a flare. I know all I want for Christmas is time with my family and those I love. I have told everyone and will tell them again, that I want NOTHING for Christmas except a donation to my personal IC Fundraising Campaign. That is the greatest gift I could receive. So think about going to the ICA website and using their Fundraising tool to set up your own Fundraising Campaign and ask friends and family to make a donation to your Campaign. You'll get a web link and all they have to do is go to your page and make a donation. You'll get a list of names from the ICA so you know who to thank and you'll save your friends and family from figuring out what to get you, or save them from all the crowds at the mall. And they'll be directly helping you and all your IC friends. I'll post a link to the ICA page where you can set up your own Fundraising page.
Check out the links and think about making this your Christmas gift to yourself and everyone in the IC Community. You'll save your friends and family from having to stand in long lines, figure out what you'd like and possibly give you one more thing you don't need. All I have done to communicate about my Campaign is to use email and Facebook to let everyone know that I don't want presents and explain that what I really want is a donation to my Campaign. I provide a little information about IC and a link to the ICA website so people that might not know a lot can read about it. So far, since I set my page up last year, I have raised close to $2,000 that has gone directly to the "Imagine No IC" Campaign which funds research only and no money goes to administrative costs. You can specify this when you set up your page.
https://www.ichelp.org/sslpage.aspx?pid=1072
http://www.ichelp.org/document.doc?id=275
http://www.ichelp.org/Page.aspx?pid=1060
I hope everyone will give this serious consideration. So many of us talk about the need for funding and research and we have the ability to make an impact on these issues ourselves!
So on Black Friday, think about what you can do for yourself and your friends in the IC Community. Instead of shopping and standing in long lines, enduring crowds, why not set up your own IC Fundraising Campaign and help make this Christmas more meaningful to you and everyone suffering with IC! I hope we get more people involved in this fantastic fundraising idea for the ICA!
Here's a link to my personal fundraising page, so you can see what they look like once the ICA gets your form and sets up your page.
https://www.ichelp.org/sslpage.aspx?pid=1113
Whatever you do, I hope you enjoy yourself, take care of yourself and give yourself permission to not take on more than you can handle. Enjoy the holidays. It's not about stuff; remember it's about family and time together.
Let the holidays begin!
Thursday, November 22, 2012
HAPPY THANKSGIVING TO ALL!
"The Pilgrims made seven times more graves
than huts. No Americans have been more impoverished than these who,
nevertheless, set aside a day of thanksgiving." - H. U. Westermayer
While I write this and reflect back on my year, I can look at it and honestly say it was not a good year for me and my IC. And I have had a particularly rough few weeks since my surgery. Probably many of us can say the same thing. It's hard not to focus on those things when we are in pain. We tend to think only of what we are going through, and that's normal.
But on this Thanksgiving Day, I have decided to acknowledge how blessed I am for all the things I DO have. I have a wonderful medical team working very hard to help me. I have the most amazing Mother who takes such good care of me and our family. My entire family who love and support me through all my struggles. My dearest friends who also support me. I have a roof over my head and food to eat. So many people are suffering through this Thanksgiving without any of these things, many as a result of Hurricane Sandy.
I can sit here on this wonderful holiday and worry and fret about my rough year, or I can be grateful for what I do have. I choose to be grateful for what I do have. I am so thankful for my family, their love and support and the love and support of my dear friends and everyone in my "IC Family" who support and encourage me every single day!
So, with much gratitude to everyone who reads my Blog, who gives me their unending love, support and encouragement, THANK YOU! I wish a very Happy Thanksgiving to everyone, your families and loved ones! I hope you enjoy the day!
Me with Mom & Dad Enjoying Thanksgiving Breakfast!
Wednesday, November 21, 2012
INSPIRATIONAL QUOTE!
I saw this today and it really rang a bell with me.
It's been a difficult and challenging week for me and I was
feeling a bit sorry for myself. I was feeling a little defeated and
struggling to stay positive when I saw this. It reminded me
that I need to focus on my recovery, not let the setbacks get me down
and, as the saying says, "never lose heart."
Tuesday, November 20, 2012
NEED SOME R&R!
Yesterday was a difficult and challenging day for me on many levels. I had two back to back doctor appointments, got the surgical dressings removed, and was out for a good part of the day, as it's an hour drive each way. I had a bathroom "mishap" in the afternoon that upset me - yes I still have my moments - and I've had some computer problems so that just added to my frustration. Some days are like that, aren't they? It just feels like everything happens all at once and that's how I felt yesterday.
Things are improving today, but I am still really tired. The pain is improving but I'm going to take my own advice and take it easy today, so not really going to write a lot today. I'll be ready for a nap soon and I'm sitting here with my heating pad on my bladder. Aaahhh!
I am really going to take it slow and easy today and tomorrow so I can enjoy the two Thanksgiving celebrations my family has planned for Thursday and Sunday.
I'm going to sign off and hope everyone has a good day. I'll be back with more to say another day (ha, I made a rhyme!) So here's to all of us getting some rest and relaxation (R&R) and taking care of ourselves as we head toward Thanksgiving!
Things are improving today, but I am still really tired. The pain is improving but I'm going to take my own advice and take it easy today, so not really going to write a lot today. I'll be ready for a nap soon and I'm sitting here with my heating pad on my bladder. Aaahhh!
I am really going to take it slow and easy today and tomorrow so I can enjoy the two Thanksgiving celebrations my family has planned for Thursday and Sunday.
I'm going to sign off and hope everyone has a good day. I'll be back with more to say another day (ha, I made a rhyme!) So here's to all of us getting some rest and relaxation (R&R) and taking care of ourselves as we head toward Thanksgiving!
Monday, November 19, 2012
OFF TO THE DOCTOR I GO!
Well, don't have much time this morning, as I am leaving shortly to head down to my IC doctor's office to get my surgical dressing removed, check me over and such. I'll be glad to get the bandages off! When I'm done there I'll walk across the hall for my psychology appointment. I think it's a good time for that too.
These are always tiring visits, as it's an hour drive each way (my wonderful mother drives me) but still. Plus the physical exertion it takes just to do all this is often exhausting. Add to that I'm still recovering from surgery, I have a strong suspicion it'll be nap time when we get home!
Still can't believe a whole week has gone by since surgery. Time flies and I am getting better each day. Still sore, tender and stiff, but I know I am better than I was a few days ago.
So, off to the doctor I go. I hope everyone has a peaceful day!
"Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have - life itself." - Walter Anderson
These are always tiring visits, as it's an hour drive each way (my wonderful mother drives me) but still. Plus the physical exertion it takes just to do all this is often exhausting. Add to that I'm still recovering from surgery, I have a strong suspicion it'll be nap time when we get home!
Still can't believe a whole week has gone by since surgery. Time flies and I am getting better each day. Still sore, tender and stiff, but I know I am better than I was a few days ago.
So, off to the doctor I go. I hope everyone has a peaceful day!
"Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have - life itself." - Walter Anderson
Sunday, November 18, 2012
SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!
"The greatest healing therapy is friendship and love."
- Hubert H. Humphrey
"Anytime You Need a Friend" - Mariah Carey
Saturday, November 17, 2012
UPS AND DOWNS
Recovering from surgery, as I am sure many already know, is a series of Ups & Downs. I have been going through this since coming home from the hospital. One minute, you feel stronger and in less pain or tired, and the next thing you know, your pain is back, and you're passed out asleep. This has been how it has been going for me. I think as we begin to see improvement, we start trying things; going up and down stairs, sitting at the table for a meal and so forth. But as we do those things, we can also find that afterwards we are in need of a nap or our pain has kicked up a notch or two.
So, I think this true for all IC patients regardless of whether we've had surgery or not. Often we'll find we're having a "good" day and run off doing all sorts of errands, house cleaning, shopping etc. Then the next day or even later that same day, we find ourselves not feeling so great anymore. What all of this has taught me is to really LISTEN to my body and the signals it is giving me. As I recover from surgery, and even just living with IC, I have to take those signals and respond. If I notice I am beginning to feel tired, or my pain is beginning to make itself known to me again, then it's time to stop whatever it is I'm doing and go rest. I think if we get really good at listening and watching for these clues our bodies send us, we can still manage to enjoy good days while not overdoing it and sending ourselves into a huge flare that is not worth the price of what we did to set it off.
So, the next time you are having a good day and feeling ambitious, take a moment to make a mental note to decide you are not going to go crazy and end up "hurting" yourself. Have some fun, do a few things, but don't go overboard.
I'm going to take my own advice right now and take a little nap. I've been online all morning, went downstairs to visit with my brother who stopped by and I am feeling tired. Time to shut things down for awhile and take a little nap.
Give yourself permission to do the same when you need, and you can find a way to still do things you want to do but maybe just in a new way!
So, I think this true for all IC patients regardless of whether we've had surgery or not. Often we'll find we're having a "good" day and run off doing all sorts of errands, house cleaning, shopping etc. Then the next day or even later that same day, we find ourselves not feeling so great anymore. What all of this has taught me is to really LISTEN to my body and the signals it is giving me. As I recover from surgery, and even just living with IC, I have to take those signals and respond. If I notice I am beginning to feel tired, or my pain is beginning to make itself known to me again, then it's time to stop whatever it is I'm doing and go rest. I think if we get really good at listening and watching for these clues our bodies send us, we can still manage to enjoy good days while not overdoing it and sending ourselves into a huge flare that is not worth the price of what we did to set it off.
So, the next time you are having a good day and feeling ambitious, take a moment to make a mental note to decide you are not going to go crazy and end up "hurting" yourself. Have some fun, do a few things, but don't go overboard.
I'm going to take my own advice right now and take a little nap. I've been online all morning, went downstairs to visit with my brother who stopped by and I am feeling tired. Time to shut things down for awhile and take a little nap.
Give yourself permission to do the same when you need, and you can find a way to still do things you want to do but maybe just in a new way!
Friday, November 16, 2012
Inter-Stim Surgery Update
Recovery from surgery is going pretty well. I'm still quite sore and stiff; my lower back right above the incision is sore and it's harder to lift my right leg, as that's the side the InterStim was replaced so that makes sense.
I took a shower and actually washed my hair and went downstairs to eat breakfast at the table. Gotta start moving around. There is nothing like a hot shower and clean hair to help make me feel better! I could have stayed in that shower until all the hot water was gone!
I thought I would share some photos of my new InterStim against the old one so everyone could see how much smaller they are today then when I got my originals back in 2003 and 2004! Technology is amazing, that's for sure! My really nice Medtronic Rep gave me the sample of the small size and my doctor gave me the one he took out of me after he cleaned it all up. I know it seems silly, but I told him I wanted it! I have used it for "show and tell" at Support Group and people do like seeing what they look like. The old one was really easily felt in my butt whereas the new small one I can't feel at all. Actually, now I'm running on two of the new small ones, as last year I had the one from 2003 replaced and this time the one from 2004 has been replaced. So I am running on two of the new smaller InterStims.
All things considered, doing pretty well.
I took a shower and actually washed my hair and went downstairs to eat breakfast at the table. Gotta start moving around. There is nothing like a hot shower and clean hair to help make me feel better! I could have stayed in that shower until all the hot water was gone!
I thought I would share some photos of my new InterStim against the old one so everyone could see how much smaller they are today then when I got my originals back in 2003 and 2004! Technology is amazing, that's for sure! My really nice Medtronic Rep gave me the sample of the small size and my doctor gave me the one he took out of me after he cleaned it all up. I know it seems silly, but I told him I wanted it! I have used it for "show and tell" at Support Group and people do like seeing what they look like. The old one was really easily felt in my butt whereas the new small one I can't feel at all. Actually, now I'm running on two of the new small ones, as last year I had the one from 2003 replaced and this time the one from 2004 has been replaced. So I am running on two of the new smaller InterStims.
All things considered, doing pretty well.
Thursday, November 15, 2012
END OF YOUR ROPE!
"When you reach the end of your rope, tie a knot in it and hang on!"
- Thomas Jefferson
- Thomas Jefferson
So many of us often feel this way, me included, but I also know that to just give up and give in are not options. I simply refuse to give up. This does not mean that I don't have my moments; I do. Had one yesterday. It's always the little, really insignificant things that seem to set me off. I'm hurting and when something goes wrong, I fall to pieces. The good news is that, with all the work I've put into therapy, I am able to recover and pull myself back together quicker than I used to when I was first diagnosed. This is progress! It's me tying a knot in my rope, as the saying above goes, and haning on!
We all have our unique challenges, but I encourage everyone to keep "hanging on" and keep fighting for better care, doctors, treatments and help! It's out there, it is! Sometimes we just have to work harder at finding it.
You CAN do it and you will feel more empowered and more in control of your destiny when you keep fighting. So, if you have a mini-meltdown, cut yourself some slack, pull yourself back together and figure out what's next. Tie a knot in your rope and HANG ON!
Wednesday, November 14, 2012
THANK YOU!
I want to thank each and everyone of my followers for all their prayers, well wishes and support as I went through my surgery this week! All the wonderful words of support, encouragement and kindness has meant so very much to me. You all are truly helping me in my recovery and I am more grateful than words can say!
This is why I write this little Blog of mine in the first place. I intended it to be a place of support, encouragement and sharing, while we recognize the struggles each of us faces. With all the wonderful words coming my way, I feel so much gratitude, so today is about thanking all of you, out in the blogosphere, for being there for me and showing such wonderful support!
"Thank you is the best prayer that anyone could say. I say that one a lot. Thank you expresses extreme gratitude, humility, understanding." - Alice Walker
"Thank You" - Natalie Merchant
Tuesday, November 13, 2012
SURGERY UPDATE!
Well, I am home from the hospital and laying in bed after basically sleeping the entire day away. Surgery went as well as can be expect, considering my unique challenges. I do have the best doctor and he went out of his way to make it as comfortable for me as possible; no easy task!
This morning he and his nurse that does my programming both came by and I even got programmed right away this morning. With the old one we took out we had been have some real challenges with getting a good program and so I was quite thrilled when we got 4 good programs right away! I was thrilled with that!
I'm sore, exhausted and still feeling the after effects of the anesthesia, but really all things considered, quite good for me. My mom will pamper me today and bring me dinner in bed tonight!
So, the hardest part is over and I am on the mend. Here's to a successful outcome!
https://plus.google.com/u/0/photos/107248070155834087045/albums/5810443553708683889
This morning he and his nurse that does my programming both came by and I even got programmed right away this morning. With the old one we took out we had been have some real challenges with getting a good program and so I was quite thrilled when we got 4 good programs right away! I was thrilled with that!
I'm sore, exhausted and still feeling the after effects of the anesthesia, but really all things considered, quite good for me. My mom will pamper me today and bring me dinner in bed tonight!
So, the hardest part is over and I am on the mend. Here's to a successful outcome!
https://plus.google.com/u/0/photos/107248070155834087045/albums/5810443553708683889
Monday, November 12, 2012
SURGERY DAY IS HERE!
Well, surgery day is here and I am as ready as I can be. We'll be leaving soon to head down to the hospital. I really hate being hungry, don't you! I'm not freaking out about surgery; I want some food!! At least it makes me laugh!
I really do have the best doctor and know I am in excellent hands! As surgeries go, this really isn't a big deal, but since I don't react as most do, it's a bit more challenging for me. I'm an old hand at it now and I'll get through it.
I'll get back online as soon as I am able and report in. I can't thank everyone enough for all their good wishes and prayers. As I have said before, but will say again, I will take all those prayers and well wishes right into the O.R. with me and know they will stand me in good stead mentally to be ready for the procedure to come! Thank you one and all!
I really do have the best doctor and know I am in excellent hands! As surgeries go, this really isn't a big deal, but since I don't react as most do, it's a bit more challenging for me. I'm an old hand at it now and I'll get through it.
I'll get back online as soon as I am able and report in. I can't thank everyone enough for all their good wishes and prayers. As I have said before, but will say again, I will take all those prayers and well wishes right into the O.R. with me and know they will stand me in good stead mentally to be ready for the procedure to come! Thank you one and all!
"The Prayer" - Celine Dion & Andrea Bocelli
Sunday, November 11, 2012
Saturday, November 10, 2012
PRE-SURGERY NEEDS!
Well, the good news is the Hospital called me early today so I don't have to spend the weekend waiting for that call to come. After speaking with my doctor last night and now the nurse for pre-surgery this morning, I feel much less anxious and ready to face my surgery in the right frame of mind. I am reassured.
I have learned that it is necessary to be pro-active and make sure I make it very clear what my special needs are since I have had some bad experiences. My doctor is on top of it, and speaking with the pre-surgery nurse I explained some of the prior bad experiences and I feel good that things will go smoothly this time. This is my 12th surgery and it's one of the Top 100 Hospitals in the country so I have always felt very confident in going there, but we are always subject to the variables of human error and their level of caring. I now make sure they all know what to expect - I am in no way the normal patient and they need to understand that what they are going to see from me in post-op is way outside of their everyday experience. I think the nurse got it and I discussed it again with the doctor last night and he definitely remembers what happened last year and is geared to make sure all goes well this time around.
Becoming your own best advocate is something that many of us have to learn. Often we are nervous to speak up with medical personnel and really advocate for ourselves. One doctor I consulted with once, after seeing my reaction to the anesthesia he gave me, told me I was the worst patient he had ever had (and he's an anesthesiologist). He told me after seeing this, that his advice is to speak up, speak up loudly if necessary and if really necessary, forget about being nice! That was from a doctor!
My mother also taught me a lot about how to advocate for myself. She's done it for me many times; once even going to one of my doctor's offices and standing there for as long as it took to get the doctor to come out and talk to her!
So, the message is I hope everyone can learn to be pro-active, speak up for yourself when necessary and don't ever let medical personnel ignore you. We know our bodies and our medical history and if you believe you need to speak up, do it and don't feel bad about it!
As we often like to say, we are Warriors and we are tougher than we give ourselves credit for! Stand strong until you get what you need and your doctor or nurse or whoever, is really listening to you!
I have learned that it is necessary to be pro-active and make sure I make it very clear what my special needs are since I have had some bad experiences. My doctor is on top of it, and speaking with the pre-surgery nurse I explained some of the prior bad experiences and I feel good that things will go smoothly this time. This is my 12th surgery and it's one of the Top 100 Hospitals in the country so I have always felt very confident in going there, but we are always subject to the variables of human error and their level of caring. I now make sure they all know what to expect - I am in no way the normal patient and they need to understand that what they are going to see from me in post-op is way outside of their everyday experience. I think the nurse got it and I discussed it again with the doctor last night and he definitely remembers what happened last year and is geared to make sure all goes well this time around.
Becoming your own best advocate is something that many of us have to learn. Often we are nervous to speak up with medical personnel and really advocate for ourselves. One doctor I consulted with once, after seeing my reaction to the anesthesia he gave me, told me I was the worst patient he had ever had (and he's an anesthesiologist). He told me after seeing this, that his advice is to speak up, speak up loudly if necessary and if really necessary, forget about being nice! That was from a doctor!
My mother also taught me a lot about how to advocate for myself. She's done it for me many times; once even going to one of my doctor's offices and standing there for as long as it took to get the doctor to come out and talk to her!
So, the message is I hope everyone can learn to be pro-active, speak up for yourself when necessary and don't ever let medical personnel ignore you. We know our bodies and our medical history and if you believe you need to speak up, do it and don't feel bad about it!
As we often like to say, we are Warriors and we are tougher than we give ourselves credit for! Stand strong until you get what you need and your doctor or nurse or whoever, is really listening to you!
Friday, November 9, 2012
MY DOC ROCKS!
Well, I just have reiterate what an AMAZING doctor I have. I posted earlier about why I felt this way, but after today it's even clearer how unique he is. As those of you following my blog know, I am scheduled for surgery Monday to replace one of my old, dead InterStim devices. This evening, around 5:45PM Chicago time, the phone rang and the caller ID showed a call coming in from my doctor's office. I just figured it was the nurse with some last minute instructions. But no, it was the doctor himself calling to go over everything for surgery on Monday, what his plan was, review my anesthesia needs, discuss how he would be approaching the replacement process and wire revision. We talked at length about my chronic uti's and so much more. In all, he spent close to 45 minutes on the phone with me talking about all my issues, Monday's surgery and in general just making me realize how lucky I am to have such a great doctor! He put my mind at ease for the weekend so I will be less anxious as I wait for Monday to get here. I was able to ask him some questions on my mind and we discussed them to my satisfaction.
To everyone who reads my blog, I realize this level of patient interaction is going to be hard to find when looking for a doctor. But it's not unreasonable to expect your doctor put this kind of thought into your care and give you this type of attention when you are in the exam room with them. Do not settle for less or doctors that seem put out by you or your questions or that you may be a challenging patient. This is a doctor who cares, is always thinking of how to help me and at the very least, make my treatments and surgery the best possible experience they can be.
I realize how lucky I am and wish each and every IC patient had a doctor that is this invested in their care, but if you don't and are not satisfied with the level your care you are getting, you keep looking for a better doctor until you find one that meets your criteria for a good doctor!
To everyone who reads my blog, I realize this level of patient interaction is going to be hard to find when looking for a doctor. But it's not unreasonable to expect your doctor put this kind of thought into your care and give you this type of attention when you are in the exam room with them. Do not settle for less or doctors that seem put out by you or your questions or that you may be a challenging patient. This is a doctor who cares, is always thinking of how to help me and at the very least, make my treatments and surgery the best possible experience they can be.
I realize how lucky I am and wish each and every IC patient had a doctor that is this invested in their care, but if you don't and are not satisfied with the level your care you are getting, you keep looking for a better doctor until you find one that meets your criteria for a good doctor!
MY DOC ROCKS #2!
So I just have to say one more time what an amazing doctor I have! I got a call yesterday afternoon from his wonderful Nurse Practitioner that I love. I assumed she was calling about my surgery Monday, but it was more than that. She had been talking to my doctor about another patient and he stopped her, told her before he forgets he wanted her to call me and tell me a that he's been thinking about my chronic UTI problem and has something he wants to try next time I come in for an instillation. Now, I've heard of this before and know there are many of you out there already doing this, but he suggested trying putting gentamicin (antibiotic) into the instillation cocktail. I told her I'm game to try anything at this point and that I was also really pleased that he's been thinking about my problem; I don't have to be in the office in front of him for him to be thinking about how to help me!
He also had her instruct me to start taking some Tagamet daily up until surgery day as it is often used to help with allergic reactions to anesthesia and I'm a real problem in this area. So again, he was thinking ahead and doing everything he can to make my surgery go as smoothly as possible.
I know how lucky I am to have a doctor like this and how rare it is to have one that doesn't just think about you when you're sitting in front of him in the exam room.
So, the take away from this is. Even if your doctor isn't quite this pro-active, you do NOT have to accept treatment from a doctor that is uncaring, flip, or tells you there is nothing to be done. If you have a doctor like that, then it's time to find a new one and don't give up until you find one you feel is really listening. That's what I feel is so important with my relationship with my IC doctor. He clearly has been really listening and looking for ways to help me. All doctors should be at least doing that when you're in the exam room with them!
I am thankful for having such a great and caring doctor. I am a very challenging patient and after 11 years he has NEVER even once given up trying to help make things better for me! Just knowing this makes me feel better and I can work with that!
3 days to go until surgery day. Trying to get organized before then - laundry etc. so I won't have to worry about stuff like that after I get home from the hospital. My sainted mother will have enough on her hands taking care of me.
May you all have a peaceful day.
He also had her instruct me to start taking some Tagamet daily up until surgery day as it is often used to help with allergic reactions to anesthesia and I'm a real problem in this area. So again, he was thinking ahead and doing everything he can to make my surgery go as smoothly as possible.
I know how lucky I am to have a doctor like this and how rare it is to have one that doesn't just think about you when you're sitting in front of him in the exam room.
So, the take away from this is. Even if your doctor isn't quite this pro-active, you do NOT have to accept treatment from a doctor that is uncaring, flip, or tells you there is nothing to be done. If you have a doctor like that, then it's time to find a new one and don't give up until you find one you feel is really listening. That's what I feel is so important with my relationship with my IC doctor. He clearly has been really listening and looking for ways to help me. All doctors should be at least doing that when you're in the exam room with them!
I am thankful for having such a great and caring doctor. I am a very challenging patient and after 11 years he has NEVER even once given up trying to help make things better for me! Just knowing this makes me feel better and I can work with that!
3 days to go until surgery day. Trying to get organized before then - laundry etc. so I won't have to worry about stuff like that after I get home from the hospital. My sainted mother will have enough on her hands taking care of me.
May you all have a peaceful day.
Tuesday, November 6, 2012
VOTE!
VOTE!
If you don't vote, you don't get to complain.
It's a privilege we should not take for granted!
No matter your party, please Vote today!
"Born in the USA" - Bruce Springsteen
Monday, November 5, 2012
WAITING .....
Don’t you just hate having to sit and wait for a phone call
from the doctor’s office? I know I do. You don’t want to miss the all-important
call because then when they leave a message and you call back, they’re no
longer available and you end up playing “phone tag” all day long. So, here I
sit waiting for the call with the test results on my urine culture, because
boy, do I need some antibiotics!
Fighting IC has its own unique challenges for each of us; finding
the right treatment(s) that work, juggling all those doctor appointments, meds,
surgery, etc. It really can overwhelm us sometimes. My constant, seemingly never
ending battle with chronic UTI’s on top of my IC is stretching my coping skills
to their max. I have been talking about
this with my psychologist a lot lately as my frustration level is very high.
Now, here I sit, with UTI #13 this year, waiting to hear from the doctor’s
office so I can get started on antibiotics. Surgery to replace my one dead
InterStim is one week from today. Also
have to wait for the pre-surgery phone calls from the hospital. Wait, wait,
wait ….
It feels like a never ending battle, sometimes, doesn’t it? I
know we all fight so many battles every day with our IC and even more so if we
have other associated conditions. I guess I’m just trying to say, I share everyone’s
struggles and disappointments when things aren’t going your way.
I know I want to stay strong and not let all the setbacks
take over my emotions, but I have given myself permission to not be “Suzy
Sunshine” all the time. I’m taking care
of myself, resting and becoming best friends with my heating pad again. I love
my heating pad, but in the Summer I just can’t use it. Now that it’s colder
outside, I have been using it daily. It helps me relax and relieves some of the
discomfort.
I hope everyone has their own little tricks or home remedies
as it were, to help get you through your difficult times. Give yourself permission
to just do what you need to do in order to feel better. No one ever wished they’d
spent more time cleaning their house or doing chores.
So, still sitting here waiting for the phone call. You know how you keep stupidly looking at the
phone like that will do anything, right! No? That’s just me? Ring, dang it,
ring!
Sunday, November 4, 2012
Sunday’s Inspirational Quote for the Day!
Sunday’s
Inspirational Quote for the Day!
“You have
to accept whatever comes and the only important thing is that you meet it with
courage and with the best that you have to give.”
Eleanor Roosevelt
Eleanor Roosevelt
“Why Walk When You Can Fly” – Mary Chapin
Carpenter
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