Friday, April 25, 2014
What I Would Tell My 23 Year-Old Self When I Was First Diagnosed With Scleroderma Part 1
Moved. For this post, click HERE
Sunday, December 8, 2013
Crossing The Streams Wearing Nothing But Lipstick
Update: This fundraiser was a colossal failure. But this is a decent post about an extended hospital stay, by a patient.
Good Sunday Morning!
My intention was to post pictures of me wearing only lipstick. I just bought a new color and for the first time it's a dark red. But then, I got lost in the shower.
The following post includes references to Ghostbusters and how you can shop to raise funds for scleroderma research and education for not one, but TWO organizations. Don't worry, there will still be pictures.
I've been in the hospital for 9 days. Sure, I've taken showers, but I have not washed my hair because use of the wrong products will destroy it. Just one shampoo with the Pantene so generously supplied by my host, will cause clumps of my hair to fall out. This is not an exaggeration. That stuff is poison to my scalp. Actually to anyone's scalp. Have you read the label?
Long story short: OH. MY. GOD. That was an awesome shower.
A lot goes on in the shower with me. (Stop that.) I daydream in the shower so long, I refer to it as getting lost in the shower. Last night, deep in the nether regions of my mind, mid-shower, I had an idea.
I was mulling over my new job as an independent sales rep, (Brand Ambassador) for Votre Vu, the fundraisers I launched with my cousin at Origami Owl the week before I was hospitalized, and how the hell I was going to follow through with my commitments while attached to an IV with my feet in the air. Then, it struck me: It was time to go full throttle on "crossing the streams."
I wanted to keep my business and writing separate, in other words, keeping those "streams" separate. The more I thought about it, the more I realized that in a perfect world, it would still sound insane. I was starting to feel like I was about to be killed by a 100 foot Marshmallow Man, and I realized it was time to cross the streams.
In the movie Ghostbusters, they saved the day by doing something with no guarantee of the outcome. (Look, if you haven't seen the movie yet, you are too young to be reading this blog. No whining about "spoilers" in the comments.)
Now What?
So, now that I'm going to be in the hospital for a minimum of six weeks, rather than show you the worst of scleroderma, I'm going to write about making the best of it. Life hands us a bag of dog crap sometimes and we have to learn to make the best of it. So if you want to read about how awful and soul sucking scleroderma is, read some studies, research and medical articles. Here, I am going to make living with the effects of scleroderma beautiful and victorious. It won't be perfect. I will have my ups and downs.
Anyway, enough of that long winded intro to the next six or more weeks of my life. Let's start by crossing some streams:
I have two fundraising soirees going on right now.
I will donating 20% of sales for each soiree to their respective host organizations. You can shop at one or both soirees. You will receive an email how much of your sale was donated to which organization who's soiree you shop.
You can look up these soirees by name. Here is how:
1. Go to www.VotreVu.com/TheMightyTurtle and Click "shop"
2. On the right side of your screen you will see: "Can't make it to the soiree?, Click here to look up your host".
3. A form will pop up that asks for the first and last name of your host. Type "Scleroderma" in the first name box and two names will show. One will say, "Scleroderma"- That one is for the San Diego Chapter of the Scleroderma Foundation. Another will say, "Scleroderma Research" - and that one is for the Scleroderma Research Foundation.
4. Note, you are not restricted to shop for only one, but to shop for both foundations, you cannot do that in the same "shopping" experience. Each soiree is independent. And if you spend over $75.00 at each soiree, there are benefits for you the customer and you don't have to choose.
FAQ
1. WHY 2 Scleroderma fundraising foundations? Why not choose one?
For example, I bet you have donated funds to more than one cancer foundation. Each foundation has a different focus like emphasis on research, or more emphasis on patient education and support groups. They are different, but they are all on the same team. The team to cure cancer. Just like in our case, we are all on the same team to cure scleroderma.
2. Karen, what's in it for you?
Well, it boosts my sales numbers and I still make a small amount of commission. To fully disclose, I make 30% commission from sales. I will be donating 20% of that 30% I earn to each foundation. I considered donating the whole 30%, but I should probably cover expenses like time, and create the ability to pay for the host gifts for each foundation and donate to the foundation hosting to use for future events.
3. Are those the only soirees you do?
Well, I do have my own soiree I am hosting because I want to earn Les Sorbet for $25.00 instead of buying it for $165.00. All proceeds to my own soiree go to me. Don't shop there. Shop at the fundraising soirees. I am disclosing I am having my own soiree because maybe someone wants to shop at all three. But honestly, these fundraisers have hit the ground with a thud, so don't shop at my soiree. Shop at the fundraising soirees and tell your friends!
4. Can I host a soiree?
Yes. I can book you an online soiree only. If you would like to have one in your home (which is really the best way to try the product) I have awesome Brand Ambassadors who would love to help you host the best possible soiree. Now, if you are worried about my benefitting from the soiree because you would like to patronize my business, no worries. These brand ambassadors are on a team I lead, so I will benefit from this.
5. Brand Ambassador sounds like a great job for me. How can I learn more about becoming a Brand Ambassador for Votre Vu?
I would love to tell you why I chose to represent Votre Vu, and feel confident recommending and wearing Votre Vu's products, tell you about their generous compensation and incentives. (LOVE THEM) Visit my online store or Facebook page and we can talk.
6. Do have to sign up to shop and get the best prices?
No. Period. Flash sales offer a great way to get higher priced items at a discount. With Votre Vu, you can shop with confidence and no commitment. (In fact, there's one going on that ends December 8th at 10pm pacific. They're serums & it's a good one!)
7. Karen, Can't I just donate straight to these organizations?
Yes, absolutely! Here are the links:
Scleroderma Research Foundation- Bounce to a Cure Cure Crew Page
Greater San Diego Chapter of the Scleroderma Foundation
Thank you very much for taking the time to learn about how you can shop for a cause this holiday season, how to donate directly to what it is that I do for Votre Vu, and how you don't have to sign up for anything to enjoy luxurious French Skin Care!
So, there you have it. I've crossed the streams. See you on the other side.
Good Sunday Morning!
My intention was to post pictures of me wearing only lipstick. I just bought a new color and for the first time it's a dark red. But then, I got lost in the shower.
The following post includes references to Ghostbusters and how you can shop to raise funds for scleroderma research and education for not one, but TWO organizations. Don't worry, there will still be pictures.
I've been in the hospital for 9 days. Sure, I've taken showers, but I have not washed my hair because use of the wrong products will destroy it. Just one shampoo with the Pantene so generously supplied by my host, will cause clumps of my hair to fall out. This is not an exaggeration. That stuff is poison to my scalp. Actually to anyone's scalp. Have you read the label?
Long story short: OH. MY. GOD. That was an awesome shower.
 |
| Before the magic of my "selfie" photo shoot. |
I was mulling over my new job as an independent sales rep, (Brand Ambassador) for Votre Vu, the fundraisers I launched with my cousin at Origami Owl the week before I was hospitalized, and how the hell I was going to follow through with my commitments while attached to an IV with my feet in the air. Then, it struck me: It was time to go full throttle on "crossing the streams."
I wanted to keep my business and writing separate, in other words, keeping those "streams" separate. The more I thought about it, the more I realized that in a perfect world, it would still sound insane. I was starting to feel like I was about to be killed by a 100 foot Marshmallow Man, and I realized it was time to cross the streams.
In the movie Ghostbusters, they saved the day by doing something with no guarantee of the outcome. (Look, if you haven't seen the movie yet, you are too young to be reading this blog. No whining about "spoilers" in the comments.)
 |
| Make up: Votre Vu Lip color: Ma Cherry Hair by Maria Vitale Salon |
Now What?
So, now that I'm going to be in the hospital for a minimum of six weeks, rather than show you the worst of scleroderma, I'm going to write about making the best of it. Life hands us a bag of dog crap sometimes and we have to learn to make the best of it. So if you want to read about how awful and soul sucking scleroderma is, read some studies, research and medical articles. Here, I am going to make living with the effects of scleroderma beautiful and victorious. It won't be perfect. I will have my ups and downs.
Anyway, enough of that long winded intro to the next six or more weeks of my life. Let's start by crossing some streams:
I have two fundraising soirees going on right now.
I will donating 20% of sales for each soiree to their respective host organizations. You can shop at one or both soirees. You will receive an email how much of your sale was donated to which organization who's soiree you shop.
 |
| Me, sans make up. Why yes, that is telangectasia. |
You can look up these soirees by name. Here is how:
1. Go to www.VotreVu.com/TheMightyTurtle and Click "shop"
2. On the right side of your screen you will see: "Can't make it to the soiree?, Click here to look up your host".
3. A form will pop up that asks for the first and last name of your host. Type "Scleroderma" in the first name box and two names will show. One will say, "Scleroderma"- That one is for the San Diego Chapter of the Scleroderma Foundation. Another will say, "Scleroderma Research" - and that one is for the Scleroderma Research Foundation.
4. Note, you are not restricted to shop for only one, but to shop for both foundations, you cannot do that in the same "shopping" experience. Each soiree is independent. And if you spend over $75.00 at each soiree, there are benefits for you the customer and you don't have to choose.
FAQ
1. WHY 2 Scleroderma fundraising foundations? Why not choose one?
 |
| Me, wearing nothing but lipstick. It's my new favorite color, Marguax |
Simple: They are both great organizations with a great deal to offer patients, doctors and research. Many patients are alive today because of the work both of these foundations have done.
For example, I bet you have donated funds to more than one cancer foundation. Each foundation has a different focus like emphasis on research, or more emphasis on patient education and support groups. They are different, but they are all on the same team. The team to cure cancer. Just like in our case, we are all on the same team to cure scleroderma.
2. Karen, what's in it for you?
Well, it boosts my sales numbers and I still make a small amount of commission. To fully disclose, I make 30% commission from sales. I will be donating 20% of that 30% I earn to each foundation. I considered donating the whole 30%, but I should probably cover expenses like time, and create the ability to pay for the host gifts for each foundation and donate to the foundation hosting to use for future events.
3. Are those the only soirees you do?
Well, I do have my own soiree I am hosting because I want to earn Les Sorbet for $25.00 instead of buying it for $165.00. All proceeds to my own soiree go to me. Don't shop there. Shop at the fundraising soirees. I am disclosing I am having my own soiree because maybe someone wants to shop at all three. But honestly, these fundraisers have hit the ground with a thud, so don't shop at my soiree. Shop at the fundraising soirees and tell your friends!
4. Can I host a soiree?
Yes. I can book you an online soiree only. If you would like to have one in your home (which is really the best way to try the product) I have awesome Brand Ambassadors who would love to help you host the best possible soiree. Now, if you are worried about my benefitting from the soiree because you would like to patronize my business, no worries. These brand ambassadors are on a team I lead, so I will benefit from this.
5. Brand Ambassador sounds like a great job for me. How can I learn more about becoming a Brand Ambassador for Votre Vu?
I would love to tell you why I chose to represent Votre Vu, and feel confident recommending and wearing Votre Vu's products, tell you about their generous compensation and incentives. (LOVE THEM) Visit my online store or Facebook page and we can talk.
6. Do have to sign up to shop and get the best prices?
No. Period. Flash sales offer a great way to get higher priced items at a discount. With Votre Vu, you can shop with confidence and no commitment. (In fact, there's one going on that ends December 8th at 10pm pacific. They're serums & it's a good one!)
7. Karen, Can't I just donate straight to these organizations?
Yes, absolutely! Here are the links:
Scleroderma Research Foundation- Bounce to a Cure Cure Crew Page
Greater San Diego Chapter of the Scleroderma Foundation
Thank you very much for taking the time to learn about how you can shop for a cause this holiday season, how to donate directly to what it is that I do for Votre Vu, and how you don't have to sign up for anything to enjoy luxurious French Skin Care!
So, there you have it. I've crossed the streams. See you on the other side.
 |
| Usually, I feel naked without make up. It's amazing what a great color lipstick can do! |
Saturday, December 7, 2013
"Life is what happens to you while you're busy making other plans".
Goodreads quotes it by Allen Saunders, but I always think of it from the song Beautiful Boy, by John Lennon. I can't think of a truer statement to advise any child.
This holiday season was the first time I remember actually feeling the Christmas spirit; the anticipation of seeing family, tree hunting with my son, and decorating our pine smelling treasure neighbors would see from our window in our our apartment on the beach. I was looking forward to big family gatherings and hearing my son laugh with his cousins, like a song I never want to end. The holiday season is magic and I was looking forward to ringing in the new year with our friends on the beach, holding my son with pots and pans at the ready to make noise at midnight. Yes, I was busy making plans.
Then, for many of us with plans, life happened. I was admitted into the emergency room after Thanksgiving Dinner. One week later, I was diagnosed with an infection in a bone in my toe called Osteomyelitis. If untreated, or not caught in time, the infected bone would have had to to be removed. Luckily, because of my proactive attention to my body, and wonderful healthcare provided by the Veteran's Administration, I have access to the best treatment there is: six weeks of IV antibiotics every eight hours.
I am unable to administer the IV antibiotics at home, so I will be admitted into a long term care unit here at the VA, where I will be able to get my medication dispensed without the risk of missing a dose, and the ability to keep my foot as immobile as possible. I don't like to ask fro so much help, but this is a situation with no room for error. I am very attached to the bone in my toe.
On the surface it sounds like the end of the world. And
yesterday for about an hour, it was. Then I decided to change the plans I had. Of course I aways have a choice, I can complain about not getting the holiday season I wanted with son, but that would be an invalid complaint. And for me, unless a complaint is going to bring about change, I refuse to waste my time with them. So, however will I get through what could be the worst possible holiday season ever? Easier than one would think. I jet have to adapt my plans to my medical needs. Sure, it could suck, but it doesn't have to.
My son can come visit me and we can have small adventures. There is art to be done, lunch in this amazing city of Long Beach and playing in the park between infusions. We can take what life has "happened" and make it special. Sure, there will be no tree in our home or baking cookies and decorating, but I bet we can find a good bakery to bring back to my room. And even though I won't be able to ice skate with him as I planned, there is a google of things to do, I just need to look them up and see what other adventures we can have.
Life gets ugly at times, but ugly times never last if I look for what's possible. Everything worth having, takes some work and some things take more work than others. And yes, sometimes, I do want to crawl into a ball and sleep until the ugliness passes. I tried that in the '00's and I missed an awful lot. And I do take time to process these things that happen that interrupt my plans by drawing under my covers for a short pity-party. I have learned to keep my pity parties t a short guest list of one, and leave very early. It's okay to grieve over a loss, but it's even more important is to move on and don;t stay so long at those pity parties. Wel, at least that's what works for me.
So this holiday season, my son and I will making up plans as we go along. We will be together, and there is nothing more magical.
This holiday season was the first time I remember actually feeling the Christmas spirit; the anticipation of seeing family, tree hunting with my son, and decorating our pine smelling treasure neighbors would see from our window in our our apartment on the beach. I was looking forward to big family gatherings and hearing my son laugh with his cousins, like a song I never want to end. The holiday season is magic and I was looking forward to ringing in the new year with our friends on the beach, holding my son with pots and pans at the ready to make noise at midnight. Yes, I was busy making plans.
Then, for many of us with plans, life happened. I was admitted into the emergency room after Thanksgiving Dinner. One week later, I was diagnosed with an infection in a bone in my toe called Osteomyelitis. If untreated, or not caught in time, the infected bone would have had to to be removed. Luckily, because of my proactive attention to my body, and wonderful healthcare provided by the Veteran's Administration, I have access to the best treatment there is: six weeks of IV antibiotics every eight hours.
I am unable to administer the IV antibiotics at home, so I will be admitted into a long term care unit here at the VA, where I will be able to get my medication dispensed without the risk of missing a dose, and the ability to keep my foot as immobile as possible. I don't like to ask fro so much help, but this is a situation with no room for error. I am very attached to the bone in my toe.
On the surface it sounds like the end of the world. And
yesterday for about an hour, it was. Then I decided to change the plans I had. Of course I aways have a choice, I can complain about not getting the holiday season I wanted with son, but that would be an invalid complaint. And for me, unless a complaint is going to bring about change, I refuse to waste my time with them. So, however will I get through what could be the worst possible holiday season ever? Easier than one would think. I jet have to adapt my plans to my medical needs. Sure, it could suck, but it doesn't have to.
My son can come visit me and we can have small adventures. There is art to be done, lunch in this amazing city of Long Beach and playing in the park between infusions. We can take what life has "happened" and make it special. Sure, there will be no tree in our home or baking cookies and decorating, but I bet we can find a good bakery to bring back to my room. And even though I won't be able to ice skate with him as I planned, there is a google of things to do, I just need to look them up and see what other adventures we can have.
Life gets ugly at times, but ugly times never last if I look for what's possible. Everything worth having, takes some work and some things take more work than others. And yes, sometimes, I do want to crawl into a ball and sleep until the ugliness passes. I tried that in the '00's and I missed an awful lot. And I do take time to process these things that happen that interrupt my plans by drawing under my covers for a short pity-party. I have learned to keep my pity parties t a short guest list of one, and leave very early. It's okay to grieve over a loss, but it's even more important is to move on and don;t stay so long at those pity parties. Wel, at least that's what works for me. So this holiday season, my son and I will making up plans as we go along. We will be together, and there is nothing more magical.
Friday, November 22, 2013
Pain Medication Is A Tool I Use Often
I am so sick of the phrase, "I don't want to depend on pain medication."
No one wants to depend on pain medication. But given the choice of spending the day with my son with pain in the background, or staying home writhing in pain, I will take my pain meds every day and twice on Sunday.
Scleroderma is not going away. My hands are never going to be the same. Changes in weather will always affect my pain levels. But if I sit still and wait for the pain to go away, I will curl up and die. I know this to be a fact because I tried sitting still and it nearly killed me.
For years I allowed what I allowed what other people thought of me, to determine my use of pain meds. Look, a good buzz is fun, but I don't get that from Captain Vicodin (Thank you for the name Stephanie Wellborn Kennedy (@Steph_In_NC) Captain Vicodin is my friend and has helped my body benefit from movement I would not have done, if I did not have such an amazing tool. Because that's what pain medication is- a tool.
And I don't say these things lightly. There are many stupid doctors who will hand a patient they have no idea what to do with, a prescription for 600 Percocet and say, "Take that as often as you like." Yes, that happened to me. That turned into 8 Percocet a day. My doctor did not think in the long term. For years I was treated as though I would be made to feel comfortable until I dropped dead. Surprise! I'm still here. The doctor did not take into account that Percocet was fast acting, strong and had a short life. It is because doctors misuse prescriptions because they don't know what they are doing, and patients end up with medication that does not work for them.
Chronic pain is long term. It's not going away. As patients, we need to make pain tolerable. Yes, I said tolerable. I have never been pain free since 1993. When a nurse asks me what my pain level is, I laugh and I answer, "A constant 2." My hands are curled. I have no fat pads on my feet. I am constantly bumping my hands into objects and sometimes people. There is no such thing as pain free. Of course I'm not okay with that, but I don't have any more time to spend in therapy to talk about how pissed I am about it. I have a 10 year old son. I live ON THE BEACH. Life is whizzing by and I spend enough time at the Veteran's Hospital, so pass the antidepressants and sedatives when needed. I'm going outside.
Look, getting to this point took a lot of time. So if you find yourself saying things like, "I don't want to become addicted to pain medication." You know what? People take cholesterol medication and eat hot dogs. You know why? Because they are out enjoying their lives. They have a healthy diet, but they have a treat every now and then. Taking pain medication so that I can tale a shower easier is not a treat for me. It's necessary. And you now what? When, I do I find I need less pain medication throughout my day. Normally, I take one Vicodin in the morning and usually, I do not need another the whole day. There is more to pain than what's causing our pain.
Look, I could go and do a search for research about pain management and exercise; exercise and depression; etc… Do the research yourself, learn about your own body, and train your doctor(s) and family. Take control of your life (Yes. Yes you can.) Take your pain meds and use them smartly and as a tool, because that's all they are. If you are using pain medication for "the buzz", you are not in enough pain to be using pain medication. Depend on them. There are very few things we can control with a chronic illness. If you can control or tolerate your pain because of a few pills, do it.
When someone tells me that I "shouldn't depend on pain meds", because of "their ideas", I ask them to do this: "Go outside, rub your knuckles on the blacktop. Then walk through some broken glass. If you can sit tight with that pain, I'll stop using my pay medication for my chronic pain. Because that's what my chronic pain feels like if I don't keep my pain under control."
Take your pain meds. Be smart about it. Don't let people who create the suspicion of abuse tell you what you should do. They are uninformed. As patients, it is often our job to educate family and even health care providers about scleroderma, sarcoidosis or whatever chronic illness we have. Be your own best advocate. Because all medical decisions are ultimately yours, you are the captain of your medical team.
No one wants to depend on pain medication. But given the choice of spending the day with my son with pain in the background, or staying home writhing in pain, I will take my pain meds every day and twice on Sunday.
Scleroderma is not going away. My hands are never going to be the same. Changes in weather will always affect my pain levels. But if I sit still and wait for the pain to go away, I will curl up and die. I know this to be a fact because I tried sitting still and it nearly killed me.
 |
| I have many more adventures in my future because of pain management w/ medication. |
For years I allowed what I allowed what other people thought of me, to determine my use of pain meds. Look, a good buzz is fun, but I don't get that from Captain Vicodin (Thank you for the name Stephanie Wellborn Kennedy (@Steph_In_NC) Captain Vicodin is my friend and has helped my body benefit from movement I would not have done, if I did not have such an amazing tool. Because that's what pain medication is- a tool.
And I don't say these things lightly. There are many stupid doctors who will hand a patient they have no idea what to do with, a prescription for 600 Percocet and say, "Take that as often as you like." Yes, that happened to me. That turned into 8 Percocet a day. My doctor did not think in the long term. For years I was treated as though I would be made to feel comfortable until I dropped dead. Surprise! I'm still here. The doctor did not take into account that Percocet was fast acting, strong and had a short life. It is because doctors misuse prescriptions because they don't know what they are doing, and patients end up with medication that does not work for them.
Chronic pain is long term. It's not going away. As patients, we need to make pain tolerable. Yes, I said tolerable. I have never been pain free since 1993. When a nurse asks me what my pain level is, I laugh and I answer, "A constant 2." My hands are curled. I have no fat pads on my feet. I am constantly bumping my hands into objects and sometimes people. There is no such thing as pain free. Of course I'm not okay with that, but I don't have any more time to spend in therapy to talk about how pissed I am about it. I have a 10 year old son. I live ON THE BEACH. Life is whizzing by and I spend enough time at the Veteran's Hospital, so pass the antidepressants and sedatives when needed. I'm going outside.
Look, getting to this point took a lot of time. So if you find yourself saying things like, "I don't want to become addicted to pain medication." You know what? People take cholesterol medication and eat hot dogs. You know why? Because they are out enjoying their lives. They have a healthy diet, but they have a treat every now and then. Taking pain medication so that I can tale a shower easier is not a treat for me. It's necessary. And you now what? When, I do I find I need less pain medication throughout my day. Normally, I take one Vicodin in the morning and usually, I do not need another the whole day. There is more to pain than what's causing our pain.
Look, I could go and do a search for research about pain management and exercise; exercise and depression; etc… Do the research yourself, learn about your own body, and train your doctor(s) and family. Take control of your life (Yes. Yes you can.) Take your pain meds and use them smartly and as a tool, because that's all they are. If you are using pain medication for "the buzz", you are not in enough pain to be using pain medication. Depend on them. There are very few things we can control with a chronic illness. If you can control or tolerate your pain because of a few pills, do it.
When someone tells me that I "shouldn't depend on pain meds", because of "their ideas", I ask them to do this: "Go outside, rub your knuckles on the blacktop. Then walk through some broken glass. If you can sit tight with that pain, I'll stop using my pay medication for my chronic pain. Because that's what my chronic pain feels like if I don't keep my pain under control."
Take your pain meds. Be smart about it. Don't let people who create the suspicion of abuse tell you what you should do. They are uninformed. As patients, it is often our job to educate family and even health care providers about scleroderma, sarcoidosis or whatever chronic illness we have. Be your own best advocate. Because all medical decisions are ultimately yours, you are the captain of your medical team.
Monday, November 18, 2013
Hernias, Ponies and Turtles
First, Lilith was too independent, then it was the serpent in the garden, then we started naming storms after women and an obstacle that blocks a sphincter is called a hernia. That's right- "her"nia! Does anyone else think this is a bit one sided? Hang on because this is going to be a rant...
Yesterday, I had another upper endoscopy. I have had so many upper endoscopies, I don't even know how many I have had. That's right, I have swallowed a camera so many times, I was surprised to wake up this last to and not remember he procedure. Someone finally got my dosage right on the anesthesia and I don't remember a thing.
Everything looks good. No mention of Barret's Esophagus. I was handed a report and full cold pictures of my esophagus and sent on my way. Could it be that the tissue on the inside of my throat no longer resembles the inside of my lower intestine. And if so, does this mean I am no longer talking our my ass?
My Hiatal Hernia is one centimeter. This made me wonder for the first time, how big are hiatal hernias? I wikipeidia'ed it and still no answer. I'm going to need to ask a doctor or spend more time n research, but I am short on time.
I have muscles to rebuild. I don't have to rebuild anything. The one thing that has been made clear to me for years is that no one expects me to do anything. Doctors don't mention exercise to me, I mention it to them. I would say that overall, I am messed up in the head (I know, this isn't news to you) because I have to motivate myself to get up, even though it hurts.
The damage is done. BUT I can regain some strength by exercise and eating right to be here longer. It's like starting over in my 20's again, without the cuteness and optimism of youth. Where do I even start on his recovery way of thinking?
I'm 43. I was supposed to be dead and I'm not. Don't get me wrong, I am really happy about that. Actually, I'm pretty excited about it. And because I'm here I'm convinced there is no such thing as a midlife crisis. It's only a crisis to those who see me deviate from their expected path and become worried I will get hurt. (Yes, I know I just made this about me, but it's my blog. It was always about me.) Now, I'm seeing myself truly off the path and I like it. It feels like a crisis because I'm in uncharted territory. But it's not really a crisis, it's about realizing what I want and going after it. I want to be able to play mini golf with my son and walk for miles. I would really like to play basketball, and pony that sneezes glitter and rainbows. I know that some of the things I want can be had. So what's stopping me? Me. So, this is me unstopping me. In a blog. (By the way I really want to thank my 5 readers. I love you guys!!!)
Look, this post started with a rant that goes nowhere. That is a pretty accurate description of my life, overall. I reach for something, then stop for some reason. I couldn't even maintain a Scleroderma reddit for corn sake! At age 43, I have to begin to follow through with my goals. Some of my goals were not achieved for health reasons. Some were not achieved simply because I chickened out, mostly because I was afraid of something. The something was usually something I created that really didn;t exist except for the power of limitation I gave it.
So now what? Honestly, I don't know where life is going to take me next. So, I'm going to put one foot in front of the other, keep my doctor's appointments, exercise, eat right, be with my son as much as I can, and choose my battles carefully. I feel like I'm just getting started.
Yesterday, I had another upper endoscopy. I have had so many upper endoscopies, I don't even know how many I have had. That's right, I have swallowed a camera so many times, I was surprised to wake up this last to and not remember he procedure. Someone finally got my dosage right on the anesthesia and I don't remember a thing.
Everything looks good. No mention of Barret's Esophagus. I was handed a report and full cold pictures of my esophagus and sent on my way. Could it be that the tissue on the inside of my throat no longer resembles the inside of my lower intestine. And if so, does this mean I am no longer talking our my ass?
My Hiatal Hernia is one centimeter. This made me wonder for the first time, how big are hiatal hernias? I wikipeidia'ed it and still no answer. I'm going to need to ask a doctor or spend more time n research, but I am short on time.
I have muscles to rebuild. I don't have to rebuild anything. The one thing that has been made clear to me for years is that no one expects me to do anything. Doctors don't mention exercise to me, I mention it to them. I would say that overall, I am messed up in the head (I know, this isn't news to you) because I have to motivate myself to get up, even though it hurts.
The damage is done. BUT I can regain some strength by exercise and eating right to be here longer. It's like starting over in my 20's again, without the cuteness and optimism of youth. Where do I even start on his recovery way of thinking?
I'm 43. I was supposed to be dead and I'm not. Don't get me wrong, I am really happy about that. Actually, I'm pretty excited about it. And because I'm here I'm convinced there is no such thing as a midlife crisis. It's only a crisis to those who see me deviate from their expected path and become worried I will get hurt. (Yes, I know I just made this about me, but it's my blog. It was always about me.) Now, I'm seeing myself truly off the path and I like it. It feels like a crisis because I'm in uncharted territory. But it's not really a crisis, it's about realizing what I want and going after it. I want to be able to play mini golf with my son and walk for miles. I would really like to play basketball, and pony that sneezes glitter and rainbows. I know that some of the things I want can be had. So what's stopping me? Me. So, this is me unstopping me. In a blog. (By the way I really want to thank my 5 readers. I love you guys!!!)
Look, this post started with a rant that goes nowhere. That is a pretty accurate description of my life, overall. I reach for something, then stop for some reason. I couldn't even maintain a Scleroderma reddit for corn sake! At age 43, I have to begin to follow through with my goals. Some of my goals were not achieved for health reasons. Some were not achieved simply because I chickened out, mostly because I was afraid of something. The something was usually something I created that really didn;t exist except for the power of limitation I gave it.
So now what? Honestly, I don't know where life is going to take me next. So, I'm going to put one foot in front of the other, keep my doctor's appointments, exercise, eat right, be with my son as much as I can, and choose my battles carefully. I feel like I'm just getting started.
Monday, October 28, 2013
And Now, A Pep Talk.
This was taken from a post I wrote and shared elsewhere, then edited into this blog post. For those of you who don't have scleroderma, feel free to replace the word "scleroderma" with your chronic illness. We have different diagnoses, but we have so much in common. Don't let a disease name deter you from an honest pep talk riddled with salty language.
Greetings Fellow Patients!
I want you to know how strong you are. I don't need to tell you all that you are in a fight for your lives. I write this blog to share what works for me and after reading some statuses, I think some of us could use a good pep talk. I'm about to speak to you in a manner that keeps me going at times. I'd ask you to forgive the salty language if it offends you, but sometimes a little foul language mixed with humor, and blunt honesty, is exactly what we need to hear. Those of you who have experienced boot camp can relate. (By the way, can you believe people actually pay to participate in boot camp fitness?) Cancer Sucks
First, I am so tired of patients complaining about how "cancer gets all the publicity". No big-name celebrity has scleroderma. A big dose of viagra and lesbian porn couldn't help get a rise with the name scleroderma, it's so unsexy.
When patients drop dead, scleroderma is mentioned in the obituary. Those who the deceased invited to walks and fundraisers for years come out of the woodwork to cry at their funeral, and walk in their memory. Everyone has a bonding, cathartic moment. Promises are made to do it the next year in the memory of the deceased, but guess what? Life goes on, which is exactly what the deceased probably wanted. The deceased needed that love, support and a cure while they were here. I know, it's a pretty brutal reality, but that's the way it goes. It doesn't make those loved ones bad people. We all don't know what we really have until it's lost.
There are not enough months in the year, or colors in the rainbow for the diseases that need curing, treatment and funding for research.
Fundraising is not our fight. Our fight is for our lives. F*ck awareness already. We are acutely aware of scleroderma and so is our family. If you want to be aware of my little heard of disease, read about it. If your "friends" seem to act only because they were prompted by a Facebook status meme to get all worked up over a cause, offer to assist them in removing their head from their ass and send an email about your messed up disease they cannot spell or pronounce. We can't control their response. If they do nothing, maybe it's to much for them, so use your energy for something else. Getting angry because people post all kinds of cancer stuff on Facebook and ignore scleroderma is a waste of good energy scleroderma patients need for the fight.
Scleroderma is a big part of our lives, but it doesn't own us. Our fate is not in god's hands until we are dead. We, are not dead. We may be in a great deal of pain, near death, or about to have a close brush with it. Those are facts. It is up to us as patients to be our own best advocate, because this is an orphan disease. Yell where it counts and kick down doors to get what you need. No one is going to do this for us. It sucks- I know. Suck it up and fight. Take breaks when you need them, depend on pain pills because they will help you manage pain. If the pills cause side effects, take the meds to help fight the side effects if it means you get to keep your fingers. Ulcers do heal! Viagra gives me a headache, so I drink coffee in the morning. Ask your doctor, (make sure it's one who keeps up with current research) what temporary things you can to to get those ulcers to heal, or hang in their with that medication that causes side effects that seem unbearable, but preferable to death or gangrene.
We get crazy advice.
Well intended, crazy advice. For example: "Try Cayenne for your Raynaud's Karen." Cayenne pepper might help circulation, but my epiglottis doesn't close and I can't feel stomach acid from the heartburn cayenne pepper causes because my esophagus is scar tissue. There is no peristaltic movement in my esophagus, hence making "hot dog down a hallway" an actual medical term. So remember good buddies, advice comes from a place of caring, but anyone who tells you that you can beat scleroderma with a vegan diet, or herbs is a fucking idiot. Smile at them, thank them for caring and move on. Do your research. See what foods harm or help you. There is no magic bullet. If your doctor doesn't know what to do, find one that does and if you can't change doctors, educate the doctor you have. If they don't listen, be persistent. Eventually, they will have to listen, to get you to shut up. Be the squeaky wheel.
Friends who feel better because we have it "worse" than they do.
I hate that. I hate hearing someone sharing what's troubling them, then feeling a need to say to me, "I don't know why I'm complaining, you have it so much worse." Unless I am engulfed in flames while someone is sharing their woes with me, I don't have it worse or better than anyone, and neither do you fellow patients. We are all stronger than we can imagine. When "shit gets real" we all step up.
F*ck Cancer, F*ck Scleroderma, F*ck Sarcoidosis, F*ck "Name Here"
Scleroderma is not the only fucked up orphan disease that does not get enough publicity. No disease is worse than another. They all suck. If you get an ulcer, don't wait for your god damn fingers to fall off; learn woundcare, debreeding and what drugs you can use to get blood to save as much of that body part as possible.
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| Be your own hero! |
Just because there is a "worst case", that doesn't mean it's going to happen to you. FIGHT!
My hands look like shit because Viagra wasn't available to me until 2005. I battled depression and it nearly killed me. But you know what I am able to do now? Lots and lots of stuff. Sure I can't play guitar anymore, but I can sing like Robert plant playing the video game rockstar with my son.Do what you can, grieve what you have lost and move on! You can do this! Stand up to those ulcers and brushes with death. I was not expected to see 30. I'm 43 now. And I've got many years ahead of me. Parts of it will suck. But I won't stop fighting to be here and keep what I've got. And it drives me to get out of bed every day, even when I feel like I've been beaten by a baseball bat in my sleep.
Need more inspiration? Click here and ROAR.
Sunday, September 29, 2013
For Roberta and her Family.
Update 9/30/13
Team Roberta Krause Smith, now walks in memory of Roberta. My, how time has flown. A follow up post will follow. For now, please show your support for Roberta's family. She was taken too soon by cancer. Why haven't we cured this yet? Follow the links at the bottom to donate to the 2013 team who walked in Roberta's memory for those still fighting.
Originally posted 9/2/10.
In 1994, I moved to La Crosse, Wisconsin from Southern California. Being a California native, let's just say I'm lucky I didn't die of hypothermia. I survived Wisconsin and fell in love with it thanks to the Krause Family. Roger and Luanne, their children Christie, Leora, Roberta and Carl. I met Carl while I was in the Navy and I moved to Wisconsin with him so we could both attend nursing school at Viterbo College (now University). The Krause Family of West Salem made me feel welcome, even at my bitchiest. I was no picnic to live with. We started out at Roger and Luanne’s and eventually, Roberta, who lived alone at the time, was nice enough to let me be her roommate. Again, I was no picnic. I was newly diagnosed with Scleroderma, in a lot of pain and very hard to live with, yet Roberta still made me feel welcome. We folded laundry on her couch and she taught me how to make a great seafood Alfredo my son absolutely loves. The Krause Family continued to invite me over to holidays and make me feel welcome, even after Carl and I broke up. They made me feel like I had a family 2000 miles from home. (On a side note, Carl’s a great guy, but when you have two Scorpios together, it's the equivalent combining gasoline and a blowtorch- that and I was such a bitch!) I'm very grateful to all of them. They showed me just how great Wisconsin is. They taught me golf, football, introduced me lutefisk, how yummy hotdish is and about how important it is to wave to my neighbors. I will never forget their hospitality and I'm very grateful for getting the opportunity to know them. I'm very grateful to their son, Carl for telling me about La Crosse and sharing his family with me.
I haven't seen the Krause Family since 1999 after I moved back to California. I recently found Leora and Roberta on Facebook and have kept in touch with them through wall postings and picture sharing. They have also been very generous contributors to the Scleroderma Foundation and have sponsored me and my son on our walks since we have regained contact.
In 2008, Roberta and her mom Luanne were both diagnosed with breast cancer. Luanne is done with her treatment and doing well. Roberta has not been so lucky. The cancer has metastasized and moved into her bones, called Metastatic Breast Cancer. This is often not diagnosed until stage IV. Metastatic cancer is often considered incurable, but there are many survivors.
Roberta has the support of her family and friends but she is in the fight of her life. This blog isn't just about Scleroderma and Sarcoidosis, it's about being human. All diseases are bad. If one disease comes closer to a cure or treatment, the research and information has a ripple effect that will help the research of others. No matter how small, progress is progress.
Everyone knows someone who has been touched by cancer. Help Roberta and her team exceed their goal of $300.00. Sponsor Roberta for the Steppin' Out in Pink Walk, Saturday, September 11. Pitch in what you can. Every donation makes a difference. If 20 people donate $5.00 each, that’s $100.00. Every dollar counts.
Thank you for taking the time to read about a family who really made a difference in my life. Thank you in advance for making a generous donation to fund research, patient support, effective treatment and one day a cure for one more horrible disease.
Team Roberta Krause Smith Donation Page
More about Metastatic Breast Cancer
A Survivor's Story
METS Matters Blog
Gunderson Lutheran Medical Foundation
Join Steppin Out In Pink on Face Book
Speak to a Survivor: 1-866-891-2392
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