I haven't given up on writing. I've been doing research and I have been coming across some great posts that put the chronic illness experience into perspective. This is another one of those articles.
Parenting from the Couch
Tuesday, April 26, 2011
Monday, April 25, 2011
Monday Blog Share
I found some new to me blogs. I just love to share things I find fun, educating and inspring.
Happy Monday!
Adventure in Estrogen
Neurologica Blog
Bad Astronomy
Back Packing Dad
If I list too many, people may not check these out. If you are not included in these lists, don't be disappointed. I still love to read you. I just want these lists to have meaning and not overwhelm.
Have a great Monday everyone!
Happy Monday!
Adventure in Estrogen
Neurologica Blog
Bad Astronomy
Back Packing Dad
If I list too many, people may not check these out. If you are not included in these lists, don't be disappointed. I still love to read you. I just want these lists to have meaning and not overwhelm.
Have a great Monday everyone!
Wednesday, April 20, 2011
Saturday, April 16, 2011
Our 20 Year Anniversary. Yes, me and Raynaud's Here's some Ideas From an Old couple.
Yes, it’s been 20 with Raynaud's. Here's a timeline list.
1. My doctors didn't believe me.
2. My Doctors were not sure what the hell it was.
3. Its Scleroderma. CREST is not just my favorite toothpaste anymore.
4. Happy 20th with Raynaud's! (Should I register at Macy's or REI for TEVA sandals?)
One good thing that I have from my 20 relationship with Raynaud's is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.
1. It doesn't matter what climate you live in, just take precautions and be plan to be cold all the time. It's a real timesaver.
2. Tune out people who tell you just because they aren't cold it means you are just "oversensitive", because they are uninformed and believe they are helpful.
3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud's attack. Bringing along a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are warm, my core temperature stays consistent.
5. If I have a Raynaud's attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else's (They are usually warmer)
6. When having a Raynaud's attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.
7. Massages help. Massage Envy is very affordable and their therapists are well trained. Never be afraid to ask about a therapist's experience. ALWAYS observe their cleanliness practices and don't be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.
8. Weekly manicures and monthly pedicures are awesome. Never ever go to a "discount" or nail place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn't always mean they are consistent with cleanliness practices. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don't be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage does help quite a bit. If someone ever pulls out a razor and tries to "trim your calluses" with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.
9. Find a good podiatrist. They are great for keeping calluses under control and the only ones that should ever use a razor to trim back calluses.
10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven't tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.
11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran's healthcare) and a private OT chain treated me like a cash cow. It wasn't the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.
12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.
14. Last but not least, the very best thing that helps keep my Raynaud's in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son's not here, my dogs will at least keep me company. They look at me like I'm crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.
15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don't be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.
16. Kama Sutra Oil is the only thing that keeps my the skin on my hands and from cracking. I use their Sweet Almond Oil. Not just for hot monkey love.
1. My doctors didn't believe me.
2. My Doctors were not sure what the hell it was.
3. Its Scleroderma. CREST is not just my favorite toothpaste anymore.
4. Happy 20th with Raynaud's! (Should I register at Macy's or REI for TEVA sandals?)
One good thing that I have from my 20 relationship with Raynaud's is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.
1. It doesn't matter what climate you live in, just take precautions and be plan to be cold all the time. It's a real timesaver.
2. Tune out people who tell you just because they aren't cold it means you are just "oversensitive", because they are uninformed and believe they are helpful.
3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud's attack. Bringing along a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are warm, my core temperature stays consistent.
5. If I have a Raynaud's attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else's (They are usually warmer)
6. When having a Raynaud's attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.
7. Massages help. Massage Envy is very affordable and their therapists are well trained. Never be afraid to ask about a therapist's experience. ALWAYS observe their cleanliness practices and don't be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.
8. Weekly manicures and monthly pedicures are awesome. Never ever go to a "discount" or nail place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn't always mean they are consistent with cleanliness practices. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don't be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage does help quite a bit. If someone ever pulls out a razor and tries to "trim your calluses" with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.
9. Find a good podiatrist. They are great for keeping calluses under control and the only ones that should ever use a razor to trim back calluses.
10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven't tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.
11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran's healthcare) and a private OT chain treated me like a cash cow. It wasn't the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.
12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.
14. Last but not least, the very best thing that helps keep my Raynaud's in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son's not here, my dogs will at least keep me company. They look at me like I'm crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.
15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don't be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.
16. Kama Sutra Oil is the only thing that keeps my the skin on my hands and from cracking. I use their Sweet Almond Oil. Not just for hot monkey love.
Thursday, April 7, 2011
Representatives Argument Lacking.
“The Troops Come First” says REP Mike Pearce R-Indiana on the House Floor today.
I'm watching the House debate on C-Span. I hear, "We can fund the troops." Maybe it's me, but that statement just feels unfinished. Allow to me to add what they are leaving out.
We can fund our troops by cutting WIC. A service many of the E-1, E-2, E-3 and E-4 families use.
We can fund our troops by cutting costs to Veteran’s Benefits. The troops will one day be Veterans and have family members who use Veteran’s Benefits for their healthcare.
We can fund our troops by cutting education. Many troops have children who receive public education.
We can fund the troops by cutting regulation for clean water, safe food and medications. Many families of troops drink water, eat and take medications.
We can fund our troops by cutting Social Security, a service that all troops pay into, and their family members use. (“removing 66% of seniors off Medicare” Rep. Sheila Jackson Lee)
This does not feel like they wish to take care of the troops. Their argument would be solid if the troops did not have families or loved ones. They are leaving out those the Troops think about while they are away from their families and loved ones. If one were to really care about the troops,they would fight for things that matter to the troops in addition to their paychecks, which help- but are just a part of the picture.
This is what I have so far. Please join me in the debate here or on Twitter.
Thank you for reading.
I'm watching the House debate on C-Span. I hear, "We can fund the troops." Maybe it's me, but that statement just feels unfinished. Allow to me to add what they are leaving out.
We can fund our troops by cutting WIC. A service many of the E-1, E-2, E-3 and E-4 families use.
We can fund our troops by cutting costs to Veteran’s Benefits. The troops will one day be Veterans and have family members who use Veteran’s Benefits for their healthcare.
We can fund our troops by cutting education. Many troops have children who receive public education.
We can fund the troops by cutting regulation for clean water, safe food and medications. Many families of troops drink water, eat and take medications.
We can fund our troops by cutting Social Security, a service that all troops pay into, and their family members use. (“removing 66% of seniors off Medicare” Rep. Sheila Jackson Lee)
This does not feel like they wish to take care of the troops. Their argument would be solid if the troops did not have families or loved ones. They are leaving out those the Troops think about while they are away from their families and loved ones. If one were to really care about the troops,they would fight for things that matter to the troops in addition to their paychecks, which help- but are just a part of the picture.
This is what I have so far. Please join me in the debate here or on Twitter.
Thank you for reading.
Tuesday, April 5, 2011
Talk to Your Elected Representatives
I posted an article at But You Don'tLook Sick.com April 2. I got many great responses about those struggling on SSi or trying to get it. I spent this morning on Twitter sending copies of my article to elected officials because I want our voices heard. If you feel strongly and can, please take some time to contact your elected officials and tell them how you feel about these cuts to Medicare and Social Security. Here's a list of REPs:
Contact elected officials
Here's a link to my post:
Paying People to Stay Home
If we don't speak up, who will?
Have a great day everyone and thanks for reading.
Contact elected officials
Here's a link to my post:
Paying People to Stay Home
If we don't speak up, who will?
Have a great day everyone and thanks for reading.
Friday, April 1, 2011
Sjodren's and Scleroderma
This post is not to judge what Marilyn Leisz knew or didn’t know it's a great opportunity to talk about Scleroderma.
Marilyn Leisz was interviewed on The Today Show. She had eye surgery and cannot close them completely. Sound familiar? If not, allow me to introduce you to Sjodren's Syndrome. Sjodren's Syndrome itself is an autoimmune disease. It was unclear to me if the two exist as separate diseases or underneath the umbrella of Scleroderma symptoms. (If anyone can clear my confusion, please comment) The "hallmark Symptoms" are dry eyes and dry mouth. Patients with Scleroderma have dry eyes and dry mouth because of the free facelift and nose job. Their eyes do not close all the way when they blink or sleep. It's tough to manage. I watched Marilyn Leisz's eyes as she spoke and it made my eyes hurt. You could see the unconscious struggle her eyes were making to close.
I had to make this short today, but I wanted to get this out. Check out the links, watch the Today Show clip and learn more about the symptoms of Scleroderma and Sjodren's.
Thank you for reading and have a great Friday!
Karen
For more Info:
Sjodren's Syndrome
The Scleroderma Research Foundation
The Scleroderma Foundation
Marilyn Leisz was interviewed on The Today Show. She had eye surgery and cannot close them completely. Sound familiar? If not, allow me to introduce you to Sjodren's Syndrome. Sjodren's Syndrome itself is an autoimmune disease. It was unclear to me if the two exist as separate diseases or underneath the umbrella of Scleroderma symptoms. (If anyone can clear my confusion, please comment) The "hallmark Symptoms" are dry eyes and dry mouth. Patients with Scleroderma have dry eyes and dry mouth because of the free facelift and nose job. Their eyes do not close all the way when they blink or sleep. It's tough to manage. I watched Marilyn Leisz's eyes as she spoke and it made my eyes hurt. You could see the unconscious struggle her eyes were making to close.
I had to make this short today, but I wanted to get this out. Check out the links, watch the Today Show clip and learn more about the symptoms of Scleroderma and Sjodren's.
Thank you for reading and have a great Friday!
Karen
For more Info:
Sjodren's Syndrome
The Scleroderma Research Foundation
The Scleroderma Foundation
Subscribe to:
Posts (Atom)
-
Hello! I've started other blogs, but I'm back at The Mighty Turtle. I know it is confusing, so I will clarify. It all started in... -
I will share my experience of getting healthcare in ways most people do not believe possible. I can't share my experience without menti...
-
Pneumonia with pulmonary fibrosis on board is the fucked up scary nightmare it sounds like. For those of you who don't know, I have ...