It's nothing I did or didn't do!

I've been trying to figure out if I'm going to leave out small details or censor this post, but I've decided not to.

My plate is full. Overwhelmingly so. I feel like I do at Thanksgiving dinner after I've polished off one plate of my favorites & against the good of my stomach, asked for a small second helping of mashed potatoes, but was handed a platter overflowing with some of everything at the table. And a side of pie. {sorry, lame analogy}. I guess I'm trying to say that I don't have it in me to recite this over and over to all those who call/text/email etc. It's not because I'm not grateful for the concern, thoughts & prayers of others {quite the opposite really!}, I am just very overwhelmed with everything. This is the easiest way to inform everyone other than those who are immediately close to me. So, if after this post you have things you want to say, or ask, then by all means, go ahead. I can't guarantee I'll answer in a timely fashion, but I will answer.

Prepare for some word vomit ;)

I'll start several years back. The end of my 8th grade year {well over a decade :-0}

I started to notice that I had small red spots under my skin. Some were kind of purple. They didn't bother me, other than their presence being noticeably red. They didn't itch, they weren't raised, there was no burning or stinging or smell or anything oozing. I noticed them one day after getting home from a track meet & had just stepped out of a hot shower. It had been freezing out and I thought that I was just warming up or adjusting. I honestly didn't think about it again for a while. Quite a while, actually. About a year later, I was at the doctor to get a round of steroids for some Bronchitis that didn't respond to antibiotics. I had been noticing the spots for a couple weeks now & decided to ask after I had the prescription for the steroids in my hand. She glanced & said I just had a minor rash & that it'd go away on its own. She dismissed it as soon as I said there was nothing itchy or bothersome about it.

Okay fine. They'll go away on their own eventually. I can live with that.

Well they didn't. I never really cared to ask about it again because I was confident that it wasn't anything serious. After all, the doctor didn't even blink an eye really.

Lets fast forward to the end of my Junior year of high school. I had just finished attending therapy with a psychologist for an eating disorder, Anorexia. My parents first got me in my freshman year. Anyway, it took a long time for me to admit that I had a problem. I finally, at this time, was willing to change & get better. I was doing really well. My frail 98 lb frame had gained a healthy 25 lbs over the course of the 9 month school year. I had been deemed to be in remission {just as a side note, I wholeheartedly believe that once you suffer from an eating disorder, it never truly goes away. to some degree, I think all previous sufferers will struggle with flare ups of varying degrees from time to time}.

I did really well through out my Senior year of hs too. I didn't purposefully starve myself & then run like a fein. However, I found that I struggled a lot with body dysmorphic disorder. {I'd look in the mirror & think my healthy & slim 123 lb frame was enormously unattractive}, but I had the mental strength now to know that what I saw wasn't reality. I was proud that I was able to maintain my weight & by the end of the year I can honestly say that for the first time, ever, I was truly happy with myself, inside & out. 

I had had other problems my Senior year with horrendous pain associated with my menstrual cycle. So horrendous that I couldn't even focus or handle the pressure of being the head drum major of the marching band. I switched with my best friend at the time, and he took over the position of head drum major and I went to be an assistant drum major. This was really the first thing I had ever "failed" at. It was really a big blow to my self esteem. I eventually sought help from an OB/GYN when I couldn't bring myself to get out of bed from pain & through an exploratory surgery was diagnosed with Endometriosis on September 6, 2007; just a few months after graduating high school & just a couple months before heading off to Rexburg, ID for my freshman year of college.

By the time I had gone in for my 3 week post surgery check-up, I was 15 lbs heavier. Spectacular. Thats the esteem booster I needed. Three weeks later I went back to have my stitches removed. I had gained 20 MORE lbs. That was 35 lbs in 6 weeks. Holy. Cow. Other than not being able to work over those 6 weeks, nothing in my life had changed. I even had a decreased appetite. My OB chalked it up to stress & hormone fluctuations from the surgery. She assured me my body would level out again. Meanwhile, it was time to combat the Endometriosis; so I was started on a continuous hormone therapy. AKA- I shouldn't have periods. Endometriosis is when the lining of your uterus that is usually shed & expelled from the body during menstration, leaks out into your body & forms painful blobs of tissue that attach to your other pelvic organs. Good times.

About fiveish weeks after starting this new hormone regimen, my face exploded, and I mean exploded in, what I came to find out as, cystic acne. I went to a really highly talked about dermatologist in Lawrence, KS (about 30 min. from Topeka). After a few visits & different treatments of oral antibiotics, topical creams, serums & special face washes, only to have worse acne every time I showed up at his office, he said he didn't know what to do. My mom & I weren't impressed. We scheduled an appt with a local dermatologist in Topeka. They immediately recommended the lovely drug Accutane for my severe cystic acne. This drug is basically toxin & has been taken off the market now. You may have seen several commercials & ads for settlements if you used this drug. I seriously considered talking to a lawyer about it. Anyways, you are absolutely not allowed to be pregnant while taking it {wasn't a problem since I was a proud virgin} because of the horrendous birth defects it causes {they supplied me with pictures}. It also causes extremely high cholesterol, severe drying of bodily fluids {I couldn't wear my contacts most of the time}, extremely dry skin {I developed scales on my arms & legs}, anxiety, depression & psychosis {I didn't suffer from psychosis}. After signing my life away, vowing to not get pregnant by using 2 forms of birth control{abstinence & birth control pills}, answering monthly questions online, receiving a BOOK about Accutane, and agreeing to have monthly blood work to monitor cholesterol & check for pregnancy, I was prescribed Accutane. 

I even had a handy dandy card that I had to submit to the pharmacy in order to get my prescription

I can't go into a lot of detail about my freshman year of college in Idaho, because quite honestly its a big blur. I had severe anxiety & depression, and pretty much everything bad that could've happened to me side effect wise, did. I came home after that school year & stayed in Kansas. 

I had undergone a lot of distressing physical changes. I continued to gain weight, but it wasn't evenly distributed. Most was in my abdomen, neck & face. Some around the base of my neck/ upper back too. I weighed 175. I was able to bust my butt for a couple months & lost 25 lbs, but over the next 2 months 28 lbs found their way back to my body, even though nothing changed. 

Around this same time, I had moved out on my own, was working full time as a server at Red Lobster & going to school full time at Washburn University, working on my Bachelor's in English AND at Washburn Tech working towards a Surgical Tech degree. 

I worked to get rid of these pounds that kept showing up from nothing it seemed. The pattern was the same. I could lose 10, 15 or even 20 lbs, but then my body just gained it all back and then some. 

Before Nathan came home from Iraq & getting married, I managed to lose around 20 lbs. I was feeling pretty good. Very soon after getting married, like 2 weeks, I ended up in the hospital with a kidney infection, I was up 10 lbs. A month later I was back in the ER & was diagnosed with mono after some blood work, I was up another 15 lbs. Then 8 weeks later I found out I was pregnant. I lost 22lbs with John from suffering from Hyperemesis Gravidarum. Then, in the last trimester was Preeclampic & gained 50 freaking pounds. 20 pounds of which happened in 6 days!!! I was appalled. I cried right there in the ob's office (it was my 37th week appointment) and cried in the car in the parking lot. And then ended up crying in the car while I was driving home before finally pulling it together. I was assured by the OB & my mom that it was all water weight. That still didn't make me feel any better about things. 

After giving birth to John, I expected the weight to fall right off from breastfeeding. It did not. I lost 25 lbs pretty fast, but the other 25 lbs stayed put. Three months after John was born, I got myself a personal trainer & gym membership. I met with my trainer 2-3 days a week & worked out 6 days a week. She had a nutrition plan for me, and I was determined! Nathan was deployed & I wanted to look & feel amazing by the time he came home. I gained weight. Steadily. We took into consideration the crazy amount of breastfeeding I was doing, and upped my calories to accommodate that & figured in how many calories I was burning. I was eating around 3000 calories to keep up with the exercise & the breastfeeding. I lost inches around my calves, thighs, arms & hips. But, my abdomen GREW. Yes, I still looked pregnant in mid-July, 4.5 months postpartum. This trend continued with weigh ins & measurements. I'd lose inches around my extremities & nothing else. My weight stayed the same, then started increasing even though I was upping the intensity. 

Well, this would make anyone depressed, and mixed with postpartum hormones & having a husband deployed to Afghanistan, I needed some help. I called the OB's office & he started me on Zoloft. My mood leveled out & I was feeling better. I lost a few pounds even. I continued to work hard with my trainer & on my own time, increasing the amount of abdominal/core work outs & still nothing. The weight started to increase again. By the time Nathan came home in September for his R&R, I was back up to the same weight I was when I delivered John {almost 6 months postpartum now}. Incredible; and not in a good way! I was angry, frustrated & more self conscious than I'd ever been in my entire life. WHY was nothing working?! I was doing everything right. I started getting really bitter about other friends & moms being able to work off their pregnancy weight, and especially so if they didn't work hard at it. Why me? 

The end of September 2012 I found out I was pregnant with Ellie. I ended up losing close to 40 lbs with her because again, I suffered from Hyperemesis Gravidarum. Then, again, in the 3rd trimester I became preeclamptic & was put on bed rest at 27 weeks up until 37 weeks. In those ten weeks I gained 25ish pounds. The OB assured me that it was water weight because of how swollen I was. 

After Ellie was born the weight fell off fast. All 25 lbs. I was really optimistic this time, I was together with Nathan & John in Germany & finally had my beautiful baby girl in my arms. We could finally be our own little family. I figured stress was the reason why nothing went right for me after John's birth. 

I started exercising lightly 5 days after I had Ellie because that's how good I felt. We went on long walks every day. Eventually when I stopped bleeding, I got into weights & cardio again. Not soon after, I started gaining weight. Not only was I gaining but I was gaining FAST. Like 5 pounds a week. You've got to be kidding me, right?! I was furious. And to top it off I was exhausted. Yes I had a newborn and a 14 month old & a husband who works 70 hours a week, I realize that's exhausting. But, the exhaustion was to the point where I literally could not get out of bed; it hurt to move. I would make myself stand so that I wouldn't fall asleep on the couch after Nathan left for work; I was afraid I wouldn't hear the kids. Then, something more disturbing. I felt weak, not just tired, but physically weak. I started having trouble carrying things, or holding things. I dropped stuff when it was handed to me. I had trouble going from a sitting position to a standing position. Like, a lot of trouble. 

So, I bring up my concerns with my doctor. He thinks I have PPDA {postpartum depression & anxiety} & ups my dose of Zoloft. Okay, fine. My mood levels out, but nothing else gets better. So he decides to test my thyroid because I'm having classic signs of Hypothyroidism. Sluggish, depressed, anxiety, hair loss, trouble focusing etc. Thyroid comes back perfectly normal. So, he suggests that we start running some Endocrine system testing & to schedule another appointment with him. I never did because my anxiety was so bad about everything, but specifically about going out into public, for fear of people seeing how disgusting I looked. Even though I tried telling myself that no one could think anything worse about me than I had already thought about myself. After a few months of more fun physical changes, increasing anxiety & consequently, depression by the day, I was a basket case & realized I needed to speak to someone asap. 

After talking myself into it for three days, I called the Behavioral Health Clinic & was scheduled with a Psychiatrist. After an hour long of discussing my history, we set a plan to keep upping my Zoloft because I guess primary care doctors tend to under medicate. She wanted me up to a therapeutic level. I was also put on the SSRI Trazodone to help with my insomnia. I also was diagnosed as having Adult ADHD & am on slow release Ritalin {Concerta is the brand name-- which has been absolutely amazing! I don't have a billion things flying through my mind anymore, my memory is getting better & most importantly, I can focus on tasks & complete them}.

Anyways, I started feeling amazing! I was happy, motivated, able to handle stress & talk myself out of any unrealistic feeling of anxiety. The Psychiatrist suggested that I speak with a therapist in conjunction to meeting with her, so I agreed. I figured I needed to leave the house by myself for once anyway. The therapist gave me a weekly assignment on my second session to write down 5 positive things about myself, without asking anyone. Well, I couldn't think of any, so instead I got to focusing on why I was still gaining weight when I was working out & eating right. I googled my symptoms & something called Cushing's Disease pops up.  In fact, everything on the first couple of search pages was about Cushing's Disease. So, I started clicking on links. It was like someone had finally opened the blackout curtains in my head. I had every single symptom. I continued to read & do research. I read other peoples' stories. I looked at their photos. I looked just like them. My story IS their story!!! My whole body felt like it was on fire. I couldn't read fast enough. I was seriously starting to think I was a big mental case who couldn't pull herself together.

I have a round, "moon" shaped face.

My cheeks are always red.

I've suffered from severe acne & still have acne issues, though thankfully, not cystic.

I gain weight regardless of diet & exercise.

The weight gain is mostly in the abdominal region, shoulders, neck & face. 

Thinner extremities than what would be in proportion to the rest of me.

I have whats loving referred to as a buffalo hump. {fat collection at the base of my neck on the upper back}

I have huge purple/red striae marks on my abdomen, obliques, lower back, on the insides of my thighs down to the middle of my calves. I have them on the inside of my upper arms & on my chest.

I have petechia on my arms & most recently all over my legs & they're even starting on my abdomen {small red/purple dots under the skin- aka- broken blood vessels, bleeding under your skin. remember my first notice of them all the way back in 8th grade??}

I have behavior/mental health changes, namely anxiety & depression. A complete 180 change.

Irregular menstrual cycles.

Headaches/migraines with ocular disturbances.

Fatigue.

Muscle weakness.

Droopy eyelids.

Abnormal hair growth on my face, back & chest. 

Hair loss on top of my head.

Extremely slow healing of cuts & bruises. Also called having fragile, thin skin.

Weak immune system, often resulting in kidney issues.

The only symptoms I don't have are Diabetes & Osteoporosis {at least that I'm aware of}.

So h a l l e l u j a h for that! I immediately picked up the phone & called the doctors office for an appointment. Three weeks later, yesterday, I had that appointment. 

I found out from my therapist that our primary care doctor had left about the time I scheduled my appointment. Nice of them to let me know! HE was the one, after all, who did suggest testing my Endocrine system. {Cushing's Disease is a non-cancerous (usually) tumor on your pituitary or your adrenal glands that cause the body to produce mega amounts of the cortisol hormone.}

At this point, I am so certain, just a burning feeling that this is what's wrong, that I start to worry that I'm going to have to jump through hoops with the new doctor to get the testing that I need. One night when I was stressing about this, I felt prompted to type up a timeline of all my symptoms & important previous medical history. So, I sat down at the computer & started typing. I then realized that hey, none of this truly means anything because she didn't know the "normal" Amber. She didn't know that I was once a thin, healthy, out going, afraid of no challenge young woman. For all she knew, I'm just a perpetually lazy, overweight woman looking for an excuse. 

I immediately started a photo timeline to correlate with all my symptoms. Dates & all. I printed off 7 pages worth of collages & info for her.

The receptionist only scheduled a short consultation for whatever reason, so I had to leave the info I prepared with the doctor because they were running behind & we couldn't extend the appointment to allow a proper comprehensive physical. She called me back an hour or two later & told me that she was able to read & review everything I had prepared for her & that we could not wait to start testing until my next appointment {July 17th}; my symptoms are too concerning. So, I go in Monday to start the blood work and a 24 hour urine sampling. 

I am not scared; I know that the end of this horrible medical saga is in sight. I feel very much at peace that none of this has been any fault of mine. I didn't do anything wrong. All the self hate that I've carried around with me for the past almost 8 years is finally dissolving. I am anxious to get the testing over with & receive treatment {surgery & possible cortisol shots for the rest of my life if my pituitary/adrenal glands are too damaged to make it}. What is stressing me out is how long the testing takes, the steps & hoops that the Army has you jump through to get treatment. We are supposed to leave here in October. They can very well delay that if my treatment gets too close to that time. If you wish to pray for me, pray that the timing of everything goes well & that we will be at peace with whatever happens. 

So, there you have it. 

Through all of this recent "enlightening", I've really felt very strongly about never thinking anything other than positive thoughts about others. We have no idea what they go through on a daily basis. We don't know their past. They may not even fully comprehend what they go through every day. What's that saying? Everyone is fighting a battle that you know nothing about. Be kind, always.

My "normal" years. The only thing Cushing's related would be the Petechia on my arms & slight rounding of the face in my last photo of me driving.
Top left: 8th grade track, showing the Petechia
The two cluster photos: 10th grade-12th grade to show that even when gaining weight, I gained evenly & normally
Bottom right: after graduation. My face starting to round.

A years transformation. SEPTEMBER 2007-SEPTEMBER 2008
The top left picture is September 2007, just a few days before my surgery for Endometriosis. {eyelids had started to look droopy}
The four photo cluster: top left {red shirt} is just a few weeks after my surgery, The other three in the cluster are from the end of November 07- the end of december 07.
The second 4 cluster of photos: my time in Idaho. The only improvement I had was my acne. My face got rounder, more red, and my abdomen really ballooned out- noticeable in the top right, bottom left & in bottom right.
Last large photo, September of 2008- 40ish lb difference from the first photo.

A 3 MONTH difference. February of 2010 & June of 2010

Big block: comparing me at 6 months pregnant to delivery day
two belly pictures: top is 35 weeks, bottom is 38 weeks. 25 lbs difference.
Bottom row from right to left: April 2012 to September 2012. 30ish pounds of difference, regardless of my
workouts & diet with my trainer. 

November 2012-April 2013. This was to show how my body changes throughout pregnancy.
I wanted the doctor to see that in this pregnancy I had relatively good weight control until the preeclampsia.
This is also to show her how closely I resemble a 5 or 6 month pregnant lady.

The following are the pages that I typed up for the doctor to read. The collages above correlate with everything listed.

Symptoms of Cushing’s Disease

(Years indicate the start of symptoms- all are on going)

§  Petechia on arms (since 2004) and legs (since 2011)

§  Purpleish/redish stretch marks on mid section, obliques, inner thighs, inner calves, inner tricep areas & breasts (started in 2008)

§  Weight gain/fatty areas in midsection, upper back, face, neck and between the shoulders (all started occurring around 2007-2008)

§  Back pain (2008)

§  Inability to lose weight through proper diet & exercise (2010)

§  Fragile skin- bruises very easy & takes months to go away. (2008)

§  Slow healing of cuts & infections (2008)

§  Severe acne & redness of face, particularly cheeks (late 2007)

§  Thicker & more abnormal hair growth (face, stomach, hands, feet, chest) more visible (2009)

§  Thinning hair on my head & eyebrows (2009)

§  Droopy eyelids (2008)

§  Fatigue & muscle weakness (2008)(2010)

§  Menstrual irregularity (2007)

§  Anxiety, Depression & Irritability (end of 2007)

§  Cognitive difficulties; trouble focusing, concentrating, memory (2008)

§  Almost daily headaches (2010)

§  Difficulty dealing with emotions (2008)

------------------

Important Medical History

(I am a non-smoker & a non-drinker. I also refrain from coffee & teas)

Exploratory Laparoscopy on September 6, 2007 for Endometriosis. Endometriosis was found. After the recovery period I was put on continuous birth control, Yaz.

My face broke out in severe acne & eventually the dermatologist I was seeing put me on Accutane after trying oral antibiotics & topical treatments. I was on Accutane from December 2007 through September 2008.

Started the SSRI Lexapro in April of 2008. Reacted terribly. Depression & Anxiety worsened, but the doctor insisted on upping my dose. In the Fall of 2008 I quit Lexapro.

In 2010 I had terrible migraines that turned into cluster headaches. I ended up going in to see my doctor who gave me a shot of Morphine. The headaches lessened afterwards & I was given migraine medication.

In 2010 I ended up on crutches for tearing a groin muscle while at the gym.

On May 5, 2011 I was hospitalized with a kidney infection. Approximately a week after I recovered & was feeling better (6 weeks total), I came down with Mono- blood was tested & confirmed at Fort Riley ER on June 16, 2011.

Pregnant with my first child end of June of 2011 as well. He was born at 38+2 in March of 2012. I was diagnosed with Hyperemesis Gravidarum, Hypertension & Preeclampsia with his pregnancy.

June of 2012 I was put on Zoloft for PPD & Anxiety (25mg then up to 50mg)

Pregnant with my second child in September of 2012. She was born in May of 2013. Same issues with this pregnancy. I was on bedrest from weeks 27-37. I delivered at 39+2.

September 2013 my Zoloft was increased to 100mg because of increased Anxiety & Depression.

April 2014 I sought help at the Bleidorn Behavioral Health Clinic. I am currently seeing a psychiatrist & a therapist. I’m on 200mg of Zoloft for Depression & Anxiety. All of which are extremely well controlled now. I also take 25-50 mg of Trazodone nightly to help with Insomnia. A new diagnosis of Adult ADHD. (June 10^th) Currently on 36 mg slow release Ritalin (Concerta brand).

Important Examples

---I hired a personal trainer in mid- June of 2012, 3 months after my first child was born. I had a meal plan, different routines to complete at the gym every day. After two weeks, I had gained 3 lbs (208 to 211), with the odd loss of inches around my calves, thighs, arms, chest & hips. My midsection stayed the same.

---After religiously working my tail off & eating balanced meals & snacks, I gained a whopping 35 pounds by September of 2012. I was back up to the weight I was when I gave birth.  All while under the direction & observation of a personal trainer.

---Same scenario after my second child was born. This is still continuing.