the journey of a Cushing’s survivor

A couple of weeks ago I talked about feeling a little off. I made an appointment with my endo, she ran some tests and discovered that my thyroid was acting up pretty badly - previously my TSH levels were 1.9 and the new test results showed it had jumped up to 3.9. Yikes!

She explained that because my thyroid was struggling so much, it was causing my pituitary to work overtime which in turn put stress on my adrenal gland. So that would explain why I’ve been feeling so crummy and having surges & with higher than normal irritability.

She recommended I go back on the Synthroid asap. OK - obviously my body needs it. But somewhere in the back of my head, I had this little voice sigh with disappointment because I really, really want to be off prescription meds. But then the rational voice kicks in and says, well duh if your body needs it, then you need to take it.

I’ve been back on Synthroid for about a week now and I do feel some improvement, but still not quite 100%. From what I understand, it can take a little time for my body to readjust - so I’m just waiting patiently.

On a side note - the past few weeks have been rather stressful and I can definitely feel it in my body - a little more achy, tight back with muscle spasms & restless sleep. And the thing is I know it’s the stress, so I’m trying to be aware and taking steps to proactively relieve my body of these toxins. Like anything else, you have to take action to make action. In my next post I’m going to share some of the techniques I’ve been using and talk about what’s working & what’s not working - so stay tuned!

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I’d like to thank everyone who has taken a few moments out of their busy schedules to vote for my blog in the HealthBloggers People’s Choice Awards - your comments are touching. It’s because I have the support from all of you that I’m able to have the strength to preserve in my battle with Cushing’s. So thank you.

The competition runs until Dec. 15th - so if you haven’t voted yet, there’s still time!

Kristin Wall http://www.mybattlewithcushings.com

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When: Saturday Nov. 2nd @ 2pm

There are many of us located in the Seattle metro area and it’s about time we get together for a meet & greet. Nothing formal - in fact, I’ll be hosting the get together at my house. Drinks & light refreshments will be provided.

(If you are not currently a member of The Cushing’s Partner Program and would like to learn more about our group or are interested in joining us for our Seattle meet & greet, please register here.)

I have an indoor kitty and stairs - so if this poses an issue for anyone, please let me know and I can arrange for a different location.

I look forward to meeting all of you Seattlelite Cushies! Please RSVP here.

Best,
Kristin

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I’ve decided to extend The Cushing’s Partner Program support group to Facebook! I know many of you are already on Facebook and thought this would be a great way for all of us to connect - plus there’s a large network of Cushies who have yet to find the Partner Program.

If you haven’t already, I would encourage all of you to join us on Facebook - the more members we have, the more people we can help support (including ourselves) in this recovery journey.

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I’ve been off prescription medications and relying solely on natural supplements prescribed by my doctor for a good 5-6 weeks now. Initially I felt great and really didn’t notice a difference, good or bad. However, shortly thereafter I began to feel more tired and found myself starting to drag through my days. I thought to myself OK this is probably normal, my body’s just trying to adjust to the recent changes.

About 2 1/2 - 3 weeks ago I began experiencing 3 new (and all too familiar) changes in my body. First, my sleep was becoming restless and interrupted. Again, I thought my body’s just trying adjust or maybe I’m feeling stressed. Then the surges slowly started coming back. Fellow Cushie’s you know what I’m talking about. It feels like little bolts of electricity are pulsating through your body, from head to toe. And it’s just a flash, usually gone as fast as it came on. And lastly, my emotions were a roller coaster, going from one extreme to the other. All this time I’d been trying to convince myself that nothing’s wrong, my body’s just trying to adjust. But there was just no denying the changes I’d been experiencing.

For those of you who had a tumor removed from your pituitary gland, your first thought would probably be oh shit, is the Cushing’s back? It can very difficult to remove all of the tumor in the pituitary area during surgery and the reoccurance rate for patients with a pituitary tumor is known to be high.

I consider myself incredibly lucky that my tumor was on my adrenal gland and once my adrenal gland was removed (with the tumor), I was cured of Cushing’s. I know logically that the chances of Cushing’s reoccurring are slim to none, but given the recent changes in my body I couldn’t help but wonder what if?

I had an appointment with my doctor on Tuesday to discuss the symptoms I’d been having. She took some blood and ordered a chemistry work up. My blood pressure & pulse were 100% normal and in the healthy range (big sigh of relief). Her initial thoughts were that my thyroid may be acting up but of course wants to get my my blood work back before making any changes to my current regimen. I should have some sort of an update by Friday.

I’ve been focusing on treating myself to some quality down time - hot bubble baths at the end of the day, lots of stretching and a good 90 minutes of hot yoga tonight.

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Many patients suffering from Cushing’s (including myself) deal with bouts of depression. Chemical & hormonal imbalances literally turned my world and my mind upside down. My endocrinologist told me that once I had surgery to remove the tumor on my adrenal gland, my depression would most likely take a turn for the worse. She didn’t go into much detail but did say it could last up to one year post-surgery.

At the time, I was at an all-time low experiencing full-blown symptoms of Cushing’s syndrome. I couldn’t imagine things getting worse than they already were. Plus my endo was pretty casual about the true severity of what I was about to face in the coming months of my recovery.

Fast forward 2 months - I’ve undergone surgery and physically feel like I’ve been run over by a freight train (and that’s an under statement). And to compound things, I felt like I’m loosing my mind - the depression was at times more than I could take. There were times that I contemplated suicide (I can’t believe I’m actually admitting this, but it’s true). It was at those moments that I had to step outside of myself, take a deep breath and convince myself that this too shall pass.

At the time, I was so caught up in my own head that I felt embarrassed & ashamed to to explain the severity of my depression to my endocrinologist. And part of it was that she didn’t explain just how hard recovery was going to be, so I thought it was just in my head. Although I did work up the courage to tell her that I was having a hard time emotionally and she put me on Prozac.

I’m not endorsing Prozac, but I can say that it truly saved my life. And for anyone who is struggling with depression should know that it’s not just in their head - it’s a chemical & hormonal imbalance that can be treated with medication.

Fast forward 12+ months - I started working with a naturopathic doctor (she’s amazing by the way!) and have taken a holistic approach to my recovery. I’ve weened off my prescription medications (including Prozac) and feel pretty damn good. However, I still have moments when I don’t feel quite right - a little blue, a little sad. And those are usually brought on by stress or too much going on in my life at the moment. Perhaps it’s my body’s way of saying hey, slow down - you can’t to everything or be everything all the time.

In reading this, I hope you walk away with this - depression is real. And it’s OK to talk about it and there are medications/natural supplements available (if you so choose) to help bring you back into balance.

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I was recently asked to join the HealthBloggers Wellsphere Network, which promotes bloggers’ work to Wellsphere’s rapidly growing audience, focuses on bringing high-quality blogs to those seeking health information and support online. The network attracts health bloggers –physicians, health professionals, expert patients, caregivers, reporters, and others – with a commitment to increasing visibility to the writers’ work and providing exclusive access to offers, features and tools for their individual blogs.

The HealthBlogger Network is holding its 2nd annual People’s Health Blogger Awards competition and My Battle With Cushing’s Syndrome has been entered and will be featured in at the Heath2.0 conference. Very exciting!

I would love for each and every one of you to show your support for My Battle With Cushing’s Syndrome by voting HERE or clicking on the badge below.

Thank you for your support!

Kristin Wall http://www.mybattlewithcushings.com

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I’ve been on natural supplements for about 9 weeks now and I can honestly say I feel better than I’ve felt in years. I know that’s a bold statement, but all of you out there who are suffering from or in recovery from Cushing’s know what I’m talking about.

I’ve been taking my daily regimen of prescription medications in conjunction with these supplements, with the goal of finding a healthy balance before I started weening off the prescriptions. Well that day is here! (Note: Please do not start or stop prescribed medications without consulting with your doctor first.) I’ve been on Synthroid to treat hypothyroidism and Prozac to stabilize my moods since 1 month post-surgery from Cushing’s. Two weeks ago I started weening off Synthroid, reducing my dose to every other day for a week. Once that was done, I did the same with Prozac. And you know what? I don’t feel any difference. I guess I can attribute that to one of two things: the natural supplements I’m taking are working their magic, bringing my body back into balance or the prescriptions had lost their effectiveness at this point in my recovery.

Either way - I’m happy to be free of prescriptions. No more calling in refills or multiple trips to the pharmacy every month. Now all I have to do is order my supplements online and with the click of a button, they’ll be in my mailbox within a matter of days.

On a side note, my son Mason celebrated his 6th birthday a couple of days ago on Sept 13th (born on 9/13 and weighed 9lbs 13oz!). It was not only a milestone for him, but for me too!

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Last night I tried my first ever hot yoga class. I’ve done regular yoga in the past (like 3 or 4 years ago) and have heard nothing but good things about hot yoga, so I decided to give it a try. Holy smokes!!! This class blew my mind - it was like a 90 minute orgasm.

The yoga studio was heated to about 105 degrees and the instructor lead the class through a series of 26 poses & stretches - all of which are done 2 times. At any time you had the option of laying down on your mat if the heat started to get too intense.

When the class started, I had butterflies in my stomach because I didn’t know how well I’d be able to do all the poses. Thing is, the heat helps you to become more flexible and limber. And I surprised myself in what I was able to do. About an hour into the class (it was a 90 min class), I started to reach my peak and the heat was starting to take a toll on me. So I took it easy, laid down when I need to and was able to finish the class.

I walked out of there on such a high, like nothing I’ve ever felt before - and completely drenched (like I’d taken a shower with my clothes on). Honestly I don’t know how I managed to drive home. I think I drank about a gallon of water before going to bed. And let me tell you, I slept like a baby.

Today I’m still feeling the after effects, jelly-like and super relaxed. My whole body feels cleansed inside & out and feels like it used to when I did endurance sports. I think I’ve finally arrived at the end of my recovery tunnel.

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I had another visit with my naturopathic doctor this morning to give her feedback on my progress with the supplements I’m taking. Well, it’s been a mixed bag over the last 2-3 weeks.

The first 2-3 weeks I started taking the supplements, I felt G-R-E-A-T; I started shedding some weight and my energy was at an all-time high. Right around week 3, my weight loss started to plateau. Now 5-6 weeks into this new regimen, virtually all the weight I lost is slowly creeping back. Luckily my energy levels have stayed the same.

I could feel a subtle difference in my appetite, my body had a hard time getting to the point of feeling satisfied. So I knew this wasn’t just all in my head or a matter of just forcing myself to eat less. Because I had experienced that brief period of having a normal appetite and my body did feel satisfied with a normal amount of food. I knew my body was starting to become unbalanced again.

I explained my issues with food cravings and the inability to feel satisfied after a meal with my doctor. She thinks it may be one of two things: 1) my serotonin is low or 2) my thyroid is acting up. So she took some blood to check my thyroid, serotonin & DHEA levels.

In the meantime, she’s up’d my dosage of TravaCor (helps to naturally boost serotonin) and AdreCor (supports adrenal function, adrenal neurotransmitters, epinephrine & norepinephrine). Hopefully I’ll start to feel some relief and see a difference within the next couple of days.

This is yet another reminder that nothing is guarenteed and there is no one answer. Rather it’s a dynamic solution that’s constantly evolving.

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