Current inventory in Pharma de Kelly:
Synthroid- 112 mg
Calcitriol- 25mcg
Hydrochlorothiazide- 25mg
Wellbutrin
Celexa
Calcium 1200mg a day
Vitamin D 2000mg a day
DHEA 25mg every other day
Vitamin B Complex (I like to get the injections too)
Potassium
Wednesday, March 13, 2013
Stupid Hypoparathyroid Disorder
I can't believe I haven't wrote about this!
This is the thing, that I hate the most. It has screwed me up in so many ways it's ridiculous!
During my surgery, my super cool enlarged thyroid had swallowed up my four parathyroid glands and they decided they liked it there, so boom, they're gone.
These glands support your calcium absorption in the blood. You have to constantly replenish or your nervous system will fail and you could have a freaking heart attack.
I've had to go to the Emergency Room TWO times, for low blood calcium.
I have found that alcohol drains me of calcium. It's literally like it's sucking it out of my system as I'm snorkeling the booze down.
I now have a low calcium emergency kit!
Here it is:
Gaterade
Xanax
Calcium Pills with Vitamin-D
Potassium
Tums
I think that's it.
When I go into an 'attack', I start to completely freak out and panic. This panic makes my symptoms crawl up and down my back, down to my hands (I call them Barbie Hands) and my whole body starts to freeze up. It is the scariest thing I can imagine.
For those who don't know the symptoms, it's a feeling of tingling, intense tingling and numbness to where your mouth won't even move when you talk. Then my legs can barely move. Arms etc... Once it hits my chest I'm convinced my heart will stop beating.
The one thing I can do to avoid ever going to the ER again? Not drink and don't forget my calcium. Like, Ever!
This is the thing, that I hate the most. It has screwed me up in so many ways it's ridiculous!
During my surgery, my super cool enlarged thyroid had swallowed up my four parathyroid glands and they decided they liked it there, so boom, they're gone.
These glands support your calcium absorption in the blood. You have to constantly replenish or your nervous system will fail and you could have a freaking heart attack.
I've had to go to the Emergency Room TWO times, for low blood calcium.
I have found that alcohol drains me of calcium. It's literally like it's sucking it out of my system as I'm snorkeling the booze down.
I now have a low calcium emergency kit!
Here it is:
Gaterade
Xanax
Calcium Pills with Vitamin-D
Potassium
Tums
I think that's it.
When I go into an 'attack', I start to completely freak out and panic. This panic makes my symptoms crawl up and down my back, down to my hands (I call them Barbie Hands) and my whole body starts to freeze up. It is the scariest thing I can imagine.
For those who don't know the symptoms, it's a feeling of tingling, intense tingling and numbness to where your mouth won't even move when you talk. Then my legs can barely move. Arms etc... Once it hits my chest I'm convinced my heart will stop beating.
The one thing I can do to avoid ever going to the ER again? Not drink and don't forget my calcium. Like, Ever!
5 years gone by...
Wow, it's been five years since my first treatment and I'm cancer free! Woohoo!
I can't believe how many people have viewed my blog, I kind of forgot about it and happened to check it out today, over 600 views!
I hope I have helped a few peeps out there figure this shit out.
So, as I said, I am now 5 years thyroid cancer free. It's a relief for my mind and my wallet.
Last year my tests cost me $2,500, and that was with insurance. It's not cheap to be sick.
I don't know how people can afford to pay their hospital bills. I am still trying to negotiate mine down since I become unemployed in the last month.
Speaking of being unemployed, I had to find new health insurance, and COBRA wasn't an option due to the size of the company (under 20 people).
I was very worried because I know that they can reject me due to "Pre-existing Conditions".
Well, let me tell you. January 2014, no one will be denied, but of course, this is 2013.
I talked to several companies who said I couldn't be covered.
So I called an Insurance Broker locally. He had just set another woman up with insurance who had thyroid cancer and voila, I'm insured.
I do have to pay a little extra due to all the meds I'm on, but for $400 a month, I'm just happy to have it right now. I highly recommend going to someone who knows the companies, can shop around and take the pressure off of you.
Enough about that, I am happy to say that after five years you only have to do the 'stupid diet' like every 3 years or something. Yes, I still hate it!
More to come since I'm unemployed, why not start blogging again!
I can't believe how many people have viewed my blog, I kind of forgot about it and happened to check it out today, over 600 views!
I hope I have helped a few peeps out there figure this shit out.
So, as I said, I am now 5 years thyroid cancer free. It's a relief for my mind and my wallet.
Last year my tests cost me $2,500, and that was with insurance. It's not cheap to be sick.
I don't know how people can afford to pay their hospital bills. I am still trying to negotiate mine down since I become unemployed in the last month.
Speaking of being unemployed, I had to find new health insurance, and COBRA wasn't an option due to the size of the company (under 20 people).
I was very worried because I know that they can reject me due to "Pre-existing Conditions".
Well, let me tell you. January 2014, no one will be denied, but of course, this is 2013.
I talked to several companies who said I couldn't be covered.
So I called an Insurance Broker locally. He had just set another woman up with insurance who had thyroid cancer and voila, I'm insured.
I do have to pay a little extra due to all the meds I'm on, but for $400 a month, I'm just happy to have it right now. I highly recommend going to someone who knows the companies, can shop around and take the pressure off of you.
Enough about that, I am happy to say that after five years you only have to do the 'stupid diet' like every 3 years or something. Yes, I still hate it!
More to come since I'm unemployed, why not start blogging again!
Tuesday, November 9, 2010
Stupid Diet Continued
This is the 4th time I've been on the low iodine diet. It continues to get easier everytime as I find things throughout the year to add to my list of acceptable foods. So, I'm sharing those additions today!
1. Wheat bread seems to be acceptable, even if it has a little salt. With turkey and a crunchy veggie, not bad
2. Cream of Wheat with real maple syrup
3. Great Harvest Cinnamon Chip or Honey Wheat bread. I can't live without it!
4. Soy Free margarine at Whole Foods by Earth Balance. Melt it and mix with honey for honey butter, awesome on the cinnamon chip bread!
5. Pasta sauce is probably fine out of the jar, but I did find a new one at Whole Foods called "monte bene" garlic marinara made with "kosher salt".
6. Trader Joes Druid Circle cookies
7. Unsalted Tortilla chips from Whole Foods with homemade salsa.
8. Vanilla Hemp milk from Trader Joes, blended with frozen fruit
9. Newman's Own unsalted popcorn (melt soy free margarine and add salt)
10. Banana with unsalted peanut butter and granola
11. Wine, pepsi, tea, flavored water
12. Starburst and jelly beans
Somehow I've managed to turn a diet that could be so healthy (fruits/veggies) into a carbfest! But it makes me happy :)
1. Wheat bread seems to be acceptable, even if it has a little salt. With turkey and a crunchy veggie, not bad
2. Cream of Wheat with real maple syrup
3. Great Harvest Cinnamon Chip or Honey Wheat bread. I can't live without it!
4. Soy Free margarine at Whole Foods by Earth Balance. Melt it and mix with honey for honey butter, awesome on the cinnamon chip bread!
5. Pasta sauce is probably fine out of the jar, but I did find a new one at Whole Foods called "monte bene" garlic marinara made with "kosher salt".
6. Trader Joes Druid Circle cookies
7. Unsalted Tortilla chips from Whole Foods with homemade salsa.
8. Vanilla Hemp milk from Trader Joes, blended with frozen fruit
9. Newman's Own unsalted popcorn (melt soy free margarine and add salt)
10. Banana with unsalted peanut butter and granola
11. Wine, pepsi, tea, flavored water
12. Starburst and jelly beans
Somehow I've managed to turn a diet that could be so healthy (fruits/veggies) into a carbfest! But it makes me happy :)
Monday, September 20, 2010
Bringing Sexy Out of the Thyloset
I started my blog "stupid thyroid cancer" in order to remind myself of what I've been through, how I got through it, and share 'what worked for me'. I am excited to be a part of the dearthyroid community and share about my experience through the blog tour!• What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor?
In July of 2007 I went to the doctor because I was tired. I expected her to tell me that was normal because I had a 1 year old son and worked full time. I'm so lucky that she didn't. She had my thyroid checked, which led to an ultrasound, which led to a biopsy, which ultimately led to me finding out on my birthday that I needed surgery because they weren't sure if the tumor was cancer or not.
On November 5, I had my first surgery and two days later, found out it was follicular thyroid cancer. I had total thyroidectomy on November 12. I have been a survivor for almost 3 years now. I also had hashimoto's and because my thyroid was so inflammed, I lost all parathyroid gland function and now live with hypoparathyroid, which gives me chronic low blood calcium. It's almost been 3 years and I'm getting ready for my yearly checkup and tests.
• September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness?
Throughout the year I tell my friends and family not to forget about their own health and to make sure they go to the doctor for a full checkup. We can't forget to take care of ourselves in our busy lives! It's so easy to check your neck for lumps. I had no idea, but my throat felt tight throughout pregnancy and after, and talking sometimes hurt, both signs that something is wrong. This disease can happen to anyone at any age, and I think that's the tricky thing about it for young women.
• Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.” What do you think of that statement? When you’re told this, how do you respond?
I have been told so many times that "If you have to get cancer, thyroid cancer is the one to get." Doctors, friends, family have all made this statement. When you are going through this horrible thing, nothing makes light of it, nothing! It is so easy to say that, to try to make someone feel better, and I'm sure their intentions are good, but I just remember thinking to myself "That's BS!". At the same time, I would actually repeat it to make someone worry less! I was kidding myself, I was scared, I was exhausted, I was sad, but nobody knew because I was "lucky". Lucky? I would not wish this upon anybody!
• Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good cancer or the easy cancer. What other myth would you like to dispel regarding thyroid cancer?
One myth I want to dispel is how easy it is to recover from thyroid cancer surgery.
Most think you take a little pill the rest of your life, and your fine.
For me, not so much. My parathyroids are all dead now, so my body completely shut down. I spent a week in the hospital and have been back to the ER calcium IV's. If I get the flu, I expect to end up in the ER to replenish my calcium. Not to mention my 'badge of honor'.
Balancing medication has been the most difficult thing about it. I give blood every 3 months to ensure I'm okay. That's not normal! I take up to 8 pills a day to be normal.
Synthroid: for thyroid hormone
Calcitriol: for calcium absorbtion
Microzide: so I don't get kidney stones from all the calcium
Calcium: 1800 mg/day=3 huge pills
Ambian: cause I can't fall asleep anymore
Celexa: to cope
• What one thing would you tell the world about thyroid cancer?
Cancer sucks, no matter if you have to get chemo, radioactive iodine, surgery, whatever! There is no good cancer! Reach out and spend quality time with your friends, talk openly about it, it helps.
• What advice would you give to a newly diagnosed thyroid cancer patient?
Don't question your gut feelings, call your doctor if you don't feel well. Also, get some counseling, this is a traumatic event in your life, and you need help coping. Also, don't believe everything you read, it will freak you out!
• Do you have a funny thyroid cancer-related story you are willing to share?
A few months after my surgery I got the Radioactive Iodine (RAI) treatment. I went to the Nuclear Medicine Lab to receive my dose.
They took me into a room and the physician assistant walked in with a pill box in a steel cup on a tray. She had gloves and a mask on. She told me to take the cup and without touching them, swallow the pills. She then walked all the way to the other corner of the room. "I'm just going to stand over here"
I'm thinking, you are standing way over there and I'm swallowing this??? Wow, this cannot be good for you. Over the next three or four nights, my pillow turned yellow. Gross!!!
About Dear Thyroid:
Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit DearThyroid.org to learn more!
Monday, May 3, 2010
Stupid Medication
As we all know, the stupid medication is one of the most difficult things to figure out after surgery and is an ongoing struggle!
At the hospital-
You'll probably have to take calcium after you have your thyroid is removed. This is because the parathyroid glands shut down from the trauma. Hopefully your fuction comes back soon, so you don't have to swallow any more horse pills! Unfortunately for me, I lost all parathyroid function for good. More to come on that in my blog named : Stupid Hypoparathyroid Disorder
You'll have to take synthroid or some sort of synthetic thyroid hormone. You will also take blood tests regularly to ensure you are getting the correct dose because if it is a little off, you could experience hypo or hyperparathyroid systems and those are not fun! Tired, Sleeplessness, Brain Drain, Dry Skin, Depression are just a few.
Now, if all you have to take is Synthroid, consider yourself lucky!
I have to take care of my Hypoparathyroid disorder with even more meds!
Calcitriol- A Vitamin D Supplement in it's processed form, to help your body absorb calcium
Hydrochlorothiazide- To help your kidney's flush out any excess calcium, so that you don't get painful Kidney stones!
Calcium - Lots and Lots of calcium, taken at least 4 hours after your thyroid hormone pill.
I've tried a few forms: Tums, Caltrate, Calcium without V-D, calcium with V-D.
My favorite? Nature Made Liquid Softgels by a landslide! I'm telling you, they go down easy and they have 600mg per pill + some added V-D, which you need even if you are taking Calcitriol.
All of this medication is crazy! But, it keeps you alive and healthy.
So, how do we deal? You have to be your own advocate people!
Sometimes I just feel crappy, so, I call my doctor and request a blood test.
Do I like blood tests? Hell no! But I sure feel better when my meds are right.
At the hospital-
You'll probably have to take calcium after you have your thyroid is removed. This is because the parathyroid glands shut down from the trauma. Hopefully your fuction comes back soon, so you don't have to swallow any more horse pills! Unfortunately for me, I lost all parathyroid function for good. More to come on that in my blog named : Stupid Hypoparathyroid Disorder
You'll have to take synthroid or some sort of synthetic thyroid hormone. You will also take blood tests regularly to ensure you are getting the correct dose because if it is a little off, you could experience hypo or hyperparathyroid systems and those are not fun! Tired, Sleeplessness, Brain Drain, Dry Skin, Depression are just a few.
Now, if all you have to take is Synthroid, consider yourself lucky!
I have to take care of my Hypoparathyroid disorder with even more meds!
Calcitriol- A Vitamin D Supplement in it's processed form, to help your body absorb calcium
Hydrochlorothiazide- To help your kidney's flush out any excess calcium, so that you don't get painful Kidney stones!
Calcium - Lots and Lots of calcium, taken at least 4 hours after your thyroid hormone pill.
I've tried a few forms: Tums, Caltrate, Calcium without V-D, calcium with V-D.
My favorite? Nature Made Liquid Softgels by a landslide! I'm telling you, they go down easy and they have 600mg per pill + some added V-D, which you need even if you are taking Calcitriol.
All of this medication is crazy! But, it keeps you alive and healthy.
So, how do we deal? You have to be your own advocate people!
Sometimes I just feel crappy, so, I call my doctor and request a blood test.
Do I like blood tests? Hell no! But I sure feel better when my meds are right.
Stupid Thyroid Cancer Resources
There are many great resources to get you or your family through this time. I've linked many of the sites I use regularly to find out correct information, local events, and fundraising opportunities.
Low Iodine Cookbook
A Must-Have as you prepare your body for the RAI treatment and/or Checkup.
Here is a blurb about the diet for your friends and family:
The purpose of a low-iodine diet is to deplete the body of its stores of iodine, to help incrase the effectiveness of the radioactive iodine scan or treatment. The premise is that when the radioactive iodine is administered, the thyroid cells will "suck" up the iodine, because the body has been so depleted. Preparing for RAI Treatment
Thyca: Thyroid Cancer Survivor Association
A great resource for educating, meeting others affected by this disease, and learning about Clinical Trials.
Another thyroid cancer survivor and myself will be starting a Support Group in the Portland area soon! More to come!
Livestrong
The Livestrong Foundation, started by Lance Armstrong after surviving testicular cancer, and going on to win several Tour de France races. They have numerous resources, volunteer and donation opportunities. They provide a journal to cancer patients trying to balance their medications, doctors and treatments as well as inspirational stories to keep you going.
American Cancer Society
Forget chat rooms, if you want to find out more information about thyroid cancer, use this site as well as the others posted here. You will get factual information about your or your friends/family's disease. Chat rooms created panic for me, but now I've learned that people in there are operating on a "worst case scenario". Not good for a newbie!
I'm Too Young For This Cancer Foundation
I love this site. Get involved with other young adult cancer survivors with the "Stupid Cancer" campaign. Join your local chapter and get invited to Happy Hour, bowling, or help organize an event to meet other people in your community affect by this disease.
Light Of Life Foundation
Want to get involved? This foundation is dedicated to thyroid cancer awareness. You may have seen their ads to "check your neck" in some of your favorite women's magazines.
Young Adult Cancer Statistics
WIP
Low Iodine Cookbook
A Must-Have as you prepare your body for the RAI treatment and/or Checkup.
Here is a blurb about the diet for your friends and family:
The purpose of a low-iodine diet is to deplete the body of its stores of iodine, to help incrase the effectiveness of the radioactive iodine scan or treatment. The premise is that when the radioactive iodine is administered, the thyroid cells will "suck" up the iodine, because the body has been so depleted. Preparing for RAI Treatment
Thyca: Thyroid Cancer Survivor Association
A great resource for educating, meeting others affected by this disease, and learning about Clinical Trials.
Another thyroid cancer survivor and myself will be starting a Support Group in the Portland area soon! More to come!
Livestrong
The Livestrong Foundation, started by Lance Armstrong after surviving testicular cancer, and going on to win several Tour de France races. They have numerous resources, volunteer and donation opportunities. They provide a journal to cancer patients trying to balance their medications, doctors and treatments as well as inspirational stories to keep you going.
American Cancer Society
Forget chat rooms, if you want to find out more information about thyroid cancer, use this site as well as the others posted here. You will get factual information about your or your friends/family's disease. Chat rooms created panic for me, but now I've learned that people in there are operating on a "worst case scenario". Not good for a newbie!
I'm Too Young For This Cancer Foundation
I love this site. Get involved with other young adult cancer survivors with the "Stupid Cancer" campaign. Join your local chapter and get invited to Happy Hour, bowling, or help organize an event to meet other people in your community affect by this disease.
Light Of Life Foundation
Want to get involved? This foundation is dedicated to thyroid cancer awareness. You may have seen their ads to "check your neck" in some of your favorite women's magazines.
Young Adult Cancer Statistics
WIP
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