Another installment of my health story

After a doctor visit yesterday, I'm taking a new thyroid med. It's called Tirosint. Anyone heard of it? I hadn't.  From what I have gathered, from my doctor and online, it's simply Synthroid without any binders or fillers. It's a gel capsule.
I was hoping that my blood-work was going to show an issue that would explain the symptoms I've been having, but nothing had changed from a month ago. In fact, the results were all mid range, better than ever. My pulse is really good, my blood pressure perfect. So I explained to my doctor that the lightheadedness, muscle weakness, heart palps, and anxiety were not something I was willing to ignore. He was surprisingly agreeable (I have doctor issues.) and said that treatment for thyroid disease is highly subjective to how well the patient is feeling. HA. this is new for me. Anyways, he said that I have several options and it was up to me to choose based on what made me feel good. The T3 in the Armour Thyroid was likely what was causing me to feel anxious, antsy and have trouble drinking caffeine. And the dr said that my body may not tolerate the Armour even though it is technically doing it's job. So my options:

1. Stay on Armour and tough it out
2. Go back to the generic of Synthroid
3. Try Tirosint
4. And if the Tirosint doesn't do it's job on it own, add Cytomel (T3)

I'm not ready to go back to Synthroid. It feels like giving up on finding a better option. On Synthroid, I slept 10-11 hrs a night to feel rested and still enjoyed afternoon naps occasionally. I don't want to waste my life away sleeping that much. That is the biggest reason I'm trying to find something else to treat my thyroid disease. So we'll see how it goes. 

What I've been up to

Ahh, life... it catches up with you sometimes, doesn't it? I moved into a new apartment last weekend, and it seems like I was saving up so much to do and plan until "after the move." I still have a ton of organizing and re-arranging to do, and the new apartment came with a lot of maintenance issues (tub leaking, laundry room leak, no cable hook up, mail key didn't work....) All of that stuff takes a lot of time to get sorted out!

So besides moving, I've also been working on a wedding website

It's for the wedding party and our families to keep up to date on all of the plans we're making. I used Blogger and chose a simple template with pages for all of the different categories.

Then I started a blog redesign, but haven't finished it yet (as you can see, it's half new and half old...)

Anyone else really sad about Picnik closing? I'm going to have to go back to using Picasa and Aviary. hmm, or maybe something else.

oh and, Working, Working, Working.... as always, I have to pay the bills. :)

My health has been pretty good. Bl and I talk a lot about how we learn all the time how much extra Hydrocortisone I'll need for different things. Like the day I moved I took 15 mg extra throughout the day and while I was drooping with exhaustion by the end of the day, it seemed to ward off any Addison's symptoms.

Thyroid-wise, I seem to be doing ok on 100mcgs of Synthroid. I had a doctor's appointment this week, so we'll see if my levels prove I need more or not.

I was hoping the Synthroid would help spur on my metabolism and I would lose some weight, but not much change there. I counted calories for 3 weeks straight in January and lost 8 lbs. But then I had some stress and ate a bunch of fried food and gained it back. The root of this problem is my lack of discipline in sticking to a healthy diet... and my lack of exercise. Losing weight has to become a priority. If I use you guys for accountability on that, you won't mind, will ya? BL has been kicking up the exercise in his life, so that's good motivation. I just need to stop making excuses and work out.

On a final note, what would we do without Pinterest?? Before I was engaged I was pinning decorating images like crazy. Now that I'm stalking wedding websites, Pinterest is so wonderful for keeping track of inspiration. Here are some of my favorite pins from the week: (click on each caption to go to the source and to see the pictures in a larger size.)

Wedding Channel

BHG.com

Ana White

The Wedding Channel

PaperFashion.net

Style me pretty

Complex Cardigans

A tutorial...

Hey everyone! I hope you're having a great day so far. I have only noticed a few symptoms/changes since the RAI treatment.

• slightly sore throat (comes and goes throughout the day)
• Goiter is gone! My thyroid doesn't feel squishy anymore
• My resting heart rate has increased
• I am exhausted! no matter how much I sleep I don't feel rested and my mind also feels tired.

Anyways, on to something I wanted to share. Shelly at House of Smiths shows how you can change your blogger profile so that when you leave comments on blogs the author can easily respond by e-mail. I think you can also make a similar change on your google profile if you don't have a blogger account. I did this a couple of months ago and it's so fun to have a conversation back and forth through e-mail with blogger friends. I would highly recommend it! If you feel uncomfortable about sharing your personal e-mail address, you can always create a separate "blogging" e-mail address. Click on Shelly's screenshot below to take you to her tutorial.

The post in which I give you a bullet list...

This is what last weekend looked like. Note- the remote is in a plastic bag... more on that later.

I keep thinking of things I want to blog about. Recipes, craft projects, things Brody has done... Then I get busy with work (very important, since it pays my rent) or I just continue to sit on the couch, crocheting and watching the Biggest Loser. But I can't help but feel like I'm behind- I want to record what's been going on- even though I feel less than motivated to blog. So here it is, a list.

• I had radioactive iodine therapy done on Friday, and spent Fri, Sat and Sun locked away in my apartment by myself.
• Brody spent the weekend with my sweet friend Kristina. I missed him a lot. 
• We have a new couch and I've been doing re-arranging and re-decorating in our living room. 
• I'm making baby gifts. I love doing it, and wish I could share what I'm making, but my friends might see and the surprises will be ruined.
• Weight Watchers was great for 3 months, but I didn't renew it and I've gained back the weight.
• My thyroid will soon be gone and my metabolism is probably going to tank too....
• I'm on a diet. but this time it just includes a few rules: eat fruits and veggies when I'm hungry between meals, only one treat each day, and eat less overall. In theory it sounds good.
• Exercising is on the top of my to do list, but I severely lack motivation. 
• It is dark at 5pm. This does not help me accomplish my #1 to do...
• Brody spent an hour last night chasing after, barking at, and tossing around an empty water bottle. Why in the world do I buy him squeaky stuffed dog toys??
• My little brother is going to Thailand in December with YWAM. I wish he was closer so that I could take him out to eat at my favorite Thai place before he goes.
• Being in isolation for three days gave me the chance to become obsessed with the Canadian show Heartland. Netflix only has season one and half of two, and now I'm dealing with Heartland withdrawal. Someone help me...
• It was so beautiful outside yesterday that I pulled my folding chair out of my trunk and sat next to my car in the parking lot on my lunch break. It felt like spring.
• I'm going to post about radioactive iodine, but it's still in the works.
• I'm busy making planner pages. I would like to share them as PDFs when I'm done. I just need to figure out how to upload PDFs to blogger. 
• Also, I ordered new glasses today.
• That is all. 

Postcardly

Yesterday started off badly with the worst migraine I've had in 6 months. (The aura was fast to onset and changed every 5 minutes or so: ocular symptoms, traveling numbness, stiffness, nausea, trouble speaking... ) fun stuff. I went home and tried to sleep it off, but had to run an errand to the post office in the late afternoon. The symptoms came back around the time I had to go in, and I think I freaked out the postal worker that helped me. I remember trying to ask what time they closed, and it came out something like,"What time do you stay at this place?" haha, I got a really weird look from him and realized I hadn't said what I meant... 8 mg more of zofran, a diet coke and salty popcorn from Target and I was doing better later on. I still feel sluggish and forgetful today, but no aura symptoms yet, so I think it has passed. (Who knows, this post might all be gibberish and I just don't realize it!)

I ran across this service today and had to share!! Postcardly sends postcards from pictures that you e-mail with your own message. If you buy a package, it can work out to be $1 a postcard. That's not too bad!

Addison's Life

via RealSimple.com

 I've been so grateful over the last year and a half to be a part of several Addison's Disease forums and boards. Having a rare chronic illness means that I don't know anyone in real life that has Addison's. So connecting with people over the internet who do has been so valuble. Yes, I have a great doctor. Yes, I have amazing family and friends. But nothing beats getting first hand advice from someone who has already been down the path I'm on.

I've really been loving what Lana's been writing on her blog FindingLana. (Hi Lana!) She is a blessing and a resource for me. I want to also be a blogger who shares my experience with Addison's in a way that is helpful to others. Last winter was a rough time for me, and what I blogged about was my perspective during the yuck of figuring out how to live with Addison's. It was still so new to me. This winter has been so incredibly different and my experience with this disease have become more positive than before. I want to share that side of Addison's too.

I would never choose this disease. I still hate that I have it, but it doesn't make me mad like it did before. I like where I am today, and a lot of what I've learned in the past two years is because of Addison's. I'm grateful for the opportunities it has brought into my life. It's weird that I can hate something but be grateful for what it has brought to my life- but it's true.

Be Kind to Your Body Challenge

 Kind Over Matter is hosting a challenge this month to get in shape, be healthier and be kinder to your body.  The plan is to encourage one another to set healthy goals and take care of our bodies. Some people want to loose weight, others exercise more...  I want to do both.  Amanda over at Kind Over Matter suggested we all sign up on Loseit.com to keep connected and motivate one another. If you'd like to join in, head over to Kind Over Matter to find out more and see more recent posts. 

A different kind of tired...

 Sometimes when I try to explain my disease, I get the feeling that I can't really explain it no matter how hard I try.  The symptoms can be vague or ambiguous at times, and it is so different for each Addison's patient.  Lana writes about her experiences with Addison's on her blog Finding Lana.  She is so much more articulate than I am.  While she has had a different experience than me with Addison's and battled it much longer- I really enjoy having another blogger to identify with.  Here she describes the almost inexpressible feeling that Addisonians often face:

"Even now and then, after almost ten years of experience with Addison's, there are days when I feel an overall sense of unwellness. Sometimes, my vision will go a bit blurry. I just feel rotten - dragging. There is not enough rest, not enough exercise, not enough steroids...not enough of anything to alleviate this kind of malaise. There might not be anything to be found that is finger-pointing wrong, not in particular, just a sense of dragging and an incredible, oppressing heaviness that can't be shaken. This is the bad business-end of Addison's disease. The hard truth is...there are times when I take extra meds, but there's nothing that can wash away the mysterious pressing upon my body. Those are the days that harsh realities in this world come to light and I admit that Addison's Disease can be unkind, but my determination can be just as formidable."

It's nice to know that someone else knows how it can be.  Some days I don't feel like I'm any different than anyone else.  Other days I get to the end of the day and I feel like I'm out of energy completely.  It's not just being tired after a long day, it's Addison's tired.  It's an emotional, can't make a decision to save my life, sick to my stomach, arms and legs heavy kind of feeling.  But knowing that it happens and having ways to deal with it makes all the difference.  You give yourself a break.  Take extra medicine.  Don't put pressure on yourself to be perfect.  And do the best you can.  Life always looks brighter after a night's rest. 

I'm in Remission!

Haha, sounds serious, huh?  Well, it is good news.  My Graves' Disease (hyperthyroidism) is not showing up on my blood work and I may be able to go for years without any trouble with my thyroid!  My doctor says that I have a 50/50 chance of never needing treatment again.

For more than two years I took medicines to suppress my over-active thyroid (Methimazole and a beta blocker).  Then when I was diagnosed with Addison's Disease, treatment for my thyroid disease got shoved to the back burner.  3 months ago things had become pretty stable with Addison's and my doctor decided it was time to see if I could go without taking thyroid meds.  And it worked!  I'm doing great, my thyroid numbers are perfect, and I'm hoping that this lasts!

Our endocrine systems are a complicated network of glands in our bodies that work closely together.  They are the pituitary, thyroid and adrenals.  Other organs perform secondary endocrine functions (like kidneys and heart), but these are the main endocrine glands.  They control growth, metabolism, mood and also tell other glands in your body when and how to work.  My thyroid decided it wanted to work overtime, and my adrenal glad decided it didn't want to work at all.  As far as I know, my pituitary gland is working just fine. 

If you're wondering, symptoms of Graves' Disease include:

·        Rapid heart rate, or palpitations

·        A feeling of over-stimulation

·        Hyperactivity/increased energy.

·        Tiredness

·        Insomnia

·        Tremor

·        Weight loss

·        Increased appetite

·        Weakness

·        Shortness of breath

·        Increased sweating

·        Heat intolerance

·        hair loss

·        Brittle nails

·        Gastrointestinal symptoms

I had a constant stomachache, was never cold, was dizzy and shaky and I often felt like my head was spinning.  When I walked up a flight of stairs I felt like my heart was going to beat out of my chest.  My thyroid was puffy and swollen, and sometimes I felt like I couldn't swallow.  I ate ALL the time but never gained any weight.

It's funny, Addison's Disease shares a lot of the same symptoms.  That's why I kept asking the doctor to test my thyroid last summer when I didn't feel well.  I think I went back 3 times telling her that something was wrong with me, but all my thyroid tests came back fine.  It turns out not all doctors know what they are doing.  But that is a story for another day.

I hope my experience can help others!  It's no fun to go through something like this and not know what's going on with you.  I am so happy that I don't have to deal with thyroid issues right now- and I'm praying that it stays this way! 

Adjusting

My name is Suzanna, and I have Addison's Disease.

haha, there I said it. now, how do I learn to accept it? This crazy disease is ruling my life, and I want it to stop now! I HATE it! I want to be normal, be back to feeling normal, be okay.

(this is a pity party if you were wondering...)

One day at a time, one moment at a time.

Then my mind starts racing and I think the worst. I tell myself, "I won't be able to work... I won't be able to support myself. Then what will I do?" ugh, why do I take my fears to the absolute worst? how about just worrying about today for a change?

While I'm letting the world into my pity party, I might as well admit that I'm mad at God. I'm mad that I can't be a healthy 24 year old. I'm mad that I have to worry about which medicine to take when, and constantly evaluate what my body is trying to tell me. I'm mad that I can't be at work right now. I'm mad that I now have 10 prescription medications to keep track of.

People are telling me that I have to let myself grieve. I guess this is it. I've cried more this week than I have in months.

I need to tell you something else though. I have to trust God despite all of this. That doesn't mean every moment I feel full of peace, that my heart and mind aren't filled with turbulence, or that the panic attacks stop coming. It does mean that I run back to Him each time my faith wavers, and that He is there even when I don't feel strong or brave or happy or ready to deal with life...

He has a plan for me, and a plan for this time in my life. I'm mad about it, and I'm not sure I'm ready for His plan. However I do know that He wants to give me good things, and He loves me even more than I can imagine.

Medical Alert Bracelet Search

The last couple of years have been full of surprises in my health. The most recent is that I have developed Addison's Disease. Addison's is a form of Adrenal Deficiency. Your adrenal glands are located near the top of each kidney and they regulate small things like, oh, your heart rate, potassium and sodium levels and the hormones that give you the ability to deal with stress.


Now that my adrenal glands have gone ca put, I have to take a new round of medicines and I have a great new Dr. telling me what I need to know. Other than that, I really don't like to do a lot of research- my mind wanders to all of the horrible possibilities if I know what COULD happen.


My Mom has also been the sweetest, strongest ally in all of this. She does the research for me, and talks me off of the cliff when I start to freak out. She also is there to give me advice. Her latest piece of advice is that I need a medical alert bracelet to tell people in emergencies about my condition. So to the Internet I go. If I have to wear one, it is going to be pretty!


Here are the ones I'm trying to decide between:



This is the Harper Medical ID Bracelet

This is the Lucy Medical ID Bracelet


This is the Finnigan + London Leather Medical ID Bracelet

(It comes with two interchangeable bracelets.)

I like them all, but I think the Lucy bracelet would be the most comfortable. Plus, I think once I get the nice silver bracelet I can make a beaded bracelet on my own. All I need to do is attach two lobster claw clasps on each end.

All three bracelets are from http://www.fiddledeeids.com/

What do you think?