Moon Buffalo

I got a moon face, buffalo hump, brittle hair, and so much more. A blog documenting one person's experience with Cushing's Disease. Banner artwork by Sonya Andrews. www.sonyaandrews.com

[moonbuffalo]

Support Domestic Violence Survivors

Hi all! Two Years ago I ran the Hot Chocolate Run 5K to support Safe Passage while completely unaware that I had Cushing’s Disease! Now - a year after surgery - I want to run again and see how much better I can do! Please take a second to share and donate if you can!

http://www.hotchocolaterun.com/give/?pid=112201

Best

[moonbuffalo]

Goodbye?

This blog is dying slowly haha

Three weeks late! Sorry! I’m probably not going to update on a schedule anymore. I’m feeling so good and feel like I’ve recovered. If anything really different or notable happens I will upload. 

Hopefully this is the end and I never have a relapse. 

Thanks for following! I hope this blog has helped you in some way. If you are going through this journey please message me! I would love to talk!

Here’s a before and after shot of my face!

And one of me when I am not just waking up

[moonbuffalo]

It's nice to see a positive Cushings blog! I stopped looking it up online ages ago because the "community" and prominent bloggers around it are so overdramatic and negative. Glad you also don't like the "Cushies" nickname, it's so gross.

I agree that there is so much scary stuff out there! I'm hoping my blog can give a sense of hope to other Cushing's survivors. We already dealt with so much crap so why not see that it can and will end?

[moonbuffalo]

Reflections: 20 and 21

So it looks like this is going to be a biweekly thing from now on. I just keep forgetting to post and since I don’t have a lot to say about my recovery now I don’t think you need updates every week. 

This is good news, I am recovering so quickly and easily now sometimes I forget that I even had the tumor/brain surgery. My life is now full of opportunities and possibility and I couldn’t be happier. 

I will continue doing the weekly photos because I want to see the change happen.

Thank you all for sticking with me!

Week 20

Week 21.

[moonbuffalo]

hi! I follow your blog because i'm still in the process of my diagnosis for cushings disease. Congrats on what sounds like a smooth recovery so far (though I know it had it's rough points). I was wondering how your hump is doing post recovery?

Hey there! Thanks so much for the message and well wishes. Unfortunately the hump has not changed much (if at all). The doctors say that that will be the last thing to go, sadly enough. It may never go away, but I'm hopeful! I wish you the best in your future diagnosis and recovery! Feel free to drop me a line any time!

[moonbuffalo]

Reflections: Week 18 and 19

Late again! So sorry. But take it as good news. I keep forgetting to update because I am feeling so good that I start to forget I ever had Cushing’s! 

I now really am off steroids and am doing GREAT! I feel amazing, eat well, workout ever day and am beginning to see real changes in how I look. 

Although these pictures don’t really show it, I have lost almost 20 lbs since the surgery! 

I am officially returning to school in the Spring and cannot wait to go back. I have so much more energy and feel so much more confident! I think this is going to be an amazing semester. 

Here are pictures from last week and this week

(Last week)

This week. 

[moonbuffalo]

Liar, liar

So I lied last update about being off steroids. The past couple days that I have been off I have felt pretty crummy. Headaches, fatigue, trouble sleeping, and achy joints are all symptoms of steroid withdrawal. Last night I had the worst headache I have had in a year probably. So I'm back on the steroids for another week, then I will try every other day and then none. Hopefully that will work out.

[moonbuffalo]

Week 17

And once again I am even later than last week. 

This week is a big one though because I am FINALLY OFF ALL STEROIDS! *Confetti cannon* Woohoo! 

I stopped on Wednesday and have been feeling slight after effects. I’m a little more tired and achy -- especially in the mornings -- but other than that I feel just swell! 

Skin is clearing up and my hair is fuller than ever! 

I know my posts have been pretty short lately. I guess I have been feeling so normal that I don’t have a lot to say on the Cushing’s subject. 

However I will keep up the weekly entries. I definitely want to do them for at least a year! 

Don’t be a stranger, if you have any questions send them my way! 

[moonbuffalo]

New Banner/Logo

Look at my AMAZING new logo! My dear friend Sonya (www.sonyaandrews.com) designed and created it for me! It’s so wonderful! Thank you so much @dedlobster! 

[moonbuffalo]

Reflections: Week 16

So maybe I should just move the blog to Thursday since I never get it up on Wednesday...

This week I am lowering my dosage to 5 mg. This is the lowest I will go before getting off the cortef completely! I am very excited. Hopefully I will feel okay this week and get to get off the meds next week.

No real changes this week. But it will happen. I can feel it.

[moonbuffalo]

Reflections: Week 15

Two days late?! How could I? Eh. It happens. 

So this week I have been feeling SO GOOD! I don’t know if it’s the lack of steroids or the new depression medication but I feel fan-flippin-tastic!

I started depression meds last week after having a pretty glum week. It was a lot of feeling like I didn’t want to/couldn’t get out of bed and feeling very lethargic and unmotivated. I have a feeling that I am going through some post-surgery/post-diagnosis depression. It is hard being away from college and not having my usual routine. It is also so difficult dealing with all the fallout from the surgery -- all the recovery and tiredness, the medications, and doctors visits. I probably won’t need the medication when I get back to school but right now I definitely need it. 

Since starting them again I have had so much more energy and have felt really good. I have been working out every day and am starting to (FINALLY) see some weight loss. I totaled everything up and I have lost 12 lbs since the surgery! 

Right now I am on 10 mg of steroids in the morning. Next week, as long as I’m feeling okay, I get to cut that in half and go down to 5 mg for two weeks. THEN I GET TO GO OFF COMPLETELY!!! 

I am so stoked to get off the steroids. I feel so ready to stop taking these pills and start living again. 

My hair feels AMAZING this week. My face is still blotchy but I have a feeling it will clear up soon enough. 

On top of that I think I’m getting my waist back! I got dressed today and saw my hourglass shape for the first time in years! It feels so good to not hate myself like I used to!

See you next week!

[moonbuffalo]

Reflections: Week 14

I know, I’m late again! Yesterday was very busy so forgive me :)

Big week this week! I finally had my stimulation test done and the results were good! A stimulation test is a test of adrenal functions. Because my pituitary is healing, my Endocrinologist said we needed to test my pituitary and see where its function is. The test consists of getting my blood drawn and then getting an injection, waiting thirty minutes, getting my blood drawn again, and waiting another thirty minutes and getting a final blood draw. 

The results were not perfect but my endo said they were good enough that I could start lowering my dosage again. So now I am on 10 mg of steroid. In two weeks I go down to 5 and two weeks after that I go down to 0! I am SO ready to get off these steroids.

Here’s me this week: 

My hair has been feeling SO soft and silky lately! I am beyond thrilled to have my hair back! My face is still splotchy and dry, but there are products to help me with that. 

I also had a bone density test done this weekend to make sure my bones weren’t too damaged by the Cushing’s. Results were also great. Everything looks fine and I don’t have to worry too much about breaking bones too easy. 

For the first time in a long time I feel good again and am looking forward to the future! 

[moonbuffalo]

Reflections: Week 13

My hair looks so good this week! I cannot believe how much my hair has changed and how quickly. Before the surgery I would shower 2, sometimes 3 times per day. My hair would look noticeably greasy within 6 hours of a shower and blow dry. My skin would feely oily and makeup slid right off. I was always sweating and my feet stank! (Man, this is all making me sound super cute.) 

Now, however, my hair stays clean for days on end (I experimented once and think I made it six days without washing. I probably could have gone longer but I like washing my hair). I don’t sweat nearly as much and my skin is actually dry! Too dry, if you ask me, but I recently read that that is totally normal post surgery. 

Look at this. 

So shiny. But in a good way. Like a shiny pretty, not shiny greasy.

Anyhoo, a surprising amount of things happened this week. Some good, some bad. Let’s start with the bad. 

I was super depressed all week. Like, stay-in-bed-all-day-don’t-eat-anything-only-getting-up-to-pee-never-wanna-move-or-interact-with-anyone-ever-again-depressed. I think part of this is situational -- I’m at home with my parents, no job, no friends around, wishing I was at Smith -- and part of it is probably chemical post-op stuff. But another part of it I think comes from the fact that what I went through was pretty damn traumatic.

I have had a hard time claiming and accepting the term “traumatic” to describe what I have been through but I am coming to terms with it (no pun intended). A trauma is defined as “an emotional shock.” Well, what I went through was definitely emotionally shocking. My mom keeps saying I have PTSD...I’m not sure that’s exactly true but I definitely have some stress relating from a trauma.

I am still coming to terms with everything that has happened to me but right now it is manifesting in depression. So I’ve started seeing a therapist and am back on medication. Hopefully next week will be better.

On the bright side -- and this is a weird thing to be excited about -- I got my period for the first time since June! I know, I know, thats really personal and blah blah blah but it is a big deal for me because it means my body is getting back to normal. Abnormal menstruation is a symptom of Cushing’s and I haven’t had a normal period in years. This is the first sign that my body is really recovering and getting back to pre-Cushing’s settings!

Lastly, I weighed in today and have lost 7 pounds since September! This is super exciting as well because weight loss is one of the most exciting thing for me. I gained 80 lbs in approximately 1 1/2 years because of the Cushing’s. Due to all the cortisol I had been gaining weight and unable to lose what I had gained. It looks like now I’m starting to be able to lose weight. 7 lbs down, 73 to go!

See you next week!

[moonbuffalo]

Reflections: Week 12

I really didn’t want to write today but here we are. I had a really crummy day feeling depressed and sad and lonely and unmotivated. It all started when I hopped on the scale for my weekly weigh in only to have gained a pound. I was really surprised and angry because I thought I had worked really hard this weekend but apparently I had not. I’d say more on the subject but I’m just feeling really blue and don’t feel like writing much. So here’s my picture and maybe I’ll update again later this week.

Here I am looking crappy again. Woohoo. Funny how my bad red blemishes don’t ever disappear. They just travel around my face. 

[moonbuffalo]

Reflections: Week 11

I’m starting to hate this weekly photo thing. I don’t see ANY change! My face is a little drier but that never really showed up in pictures anyway. I don’t see much weight loss in the face and my acne is still pretty spotty. 

I will continue this, though. Eventually change will happen. I am hopeful. 

Yet another beautiful photo of me at 3 am. Enjoy.

[moonbuffalo]

Symptoms: Foggy Brain

Since I found out I had Cushing’s I seem to be mentioning my tumor pretty frequently. I don’t want Cushing’s to be the thing that defines me but it definitely has had a very large effect on me and my life for the past three (or more) years and will continue impacting me in the future. I find myself blaming the tumor frequently and even though I try not to mention it, somehow it aways comes up. One of the main reasons I mention the tumor in polite conversation is in reference to my poor memory and my fuzzy headed-ness. 

This week I have been thinking about my mental capacities a lot. I have been thinking about how I think now compared to how I used to think. I’ve been noticing much more frequently just much my brain has been impacted by the Cushing’s. Not only have I been thinking about the status of my brain currently and the difficulties I face as I heal, but I also have contemplated how my brain has been affected the past few years.

I have forgotten so much and don’t know if I will gain the memories back or if I will have to relearn things. I have forgotten basic things that everyone learns in elementary and high school. Mental math is hard for me, directions are confusing, and memorizing things is near impossible. I have forgotten names. I have forgotten experiences. Most of high school is just a big blur with only particularly emotionally strong memories standing out. When I try to recall what I learned last semester I draw a blank.

It’s really tough. All my life I had been praised for being the smart one. For being curious, reading constantly, and pursuing difficult classes. When I got to college I started feeling less capable. I was no longer the only one who was “smartest in my class.” I got down on myself a lot, thinking I was stupid or just didn’t care enough.

Reading became more difficult and classes more frustrating. I thought that it was just college, that college was just harder than high school and I hadn’t been as prepared as I thought. I figured that it was a learning curve and eventually I would catch up; I just had to get used to reading more academic papers and working in different conditions than before. 

When I found out about Cushing’s it suddenly made so much more sense. I wasn’t just inconsiderate, I wasn’t just bad at memorizing the Periodic Table of Elements, I actually had something keeping me from being able to remember the names of my co-workers, my best friend’s birthday, even conversations I had the night before. It is so difficult to come to terms with the fact that it wasn’t me. I’m not “just dumb” or “not suited for academics.” It wasn’t that I wasn’t trying hard or that I had lost interest. My brain wasn’t working like a normal brain.

The easiest way for me to think about it is that the cortisol is like fog. The more cortisol was pumped out, the more fog built up around my brain. For years fog rolled in and filled my skull. Now there is no more fog being made but I still have to wait for it to clear. I am slowly wading through the fog, trying to find my way out. There is many years worth of built up fog in my way and it will take time for it all to clear.

But I have to also focus on the good things. I have noticed that my memory of recent things (things that have happened since the surgery) is slightly improving. I still have difficulty reading and retaining what I read. I also have issues keeping numbers straight, doing mental math, or repeating back a lot of information. But the brain is plastic (I remember that much from Psych 101) and the more I use it the stronger it will get. 

Feeling dumb is very hard on me. I have always been proud of my intellect and losing that has taught me a lot about myself. I no longer judge people based on their education or intelligence. I recognize now that people can have strengths in other areas and that is just as important. I realized that high school and college aren’t for everyone and that some people thrive without them.

I am grateful to have learned these things but I am also still very frightened that I will not get back to my original brain functions. I am afraid of people thinking I am stupid. Every time I make a mistake or say something dumb I want to shout “It’s not my fault! It’s the tumor! It’s a symptom of Cushing’s!” I am so frightened by being stupid because my intellect was such a big part of me growing up. I’m not beautiful, I’m not talented, I’m not athletic or artistic, but I had my brains. And if I don’t have that anymore, then who am I?

[moonbuffalo]

Reflections: Week 10

Woops, late again! Not too much to say about this week. Although, I did start training on Tuesday and am very excited to start working on getting in shape and healthy! Hopefully we will start seeing weight loss in my photos!

And look, I brushed my hair today!