Same IG Different Name

Hey guys I forgot to update but I changed my Instagram to 1delicateheart last week. Same page new name & It matches the blog now :) Thank you everyone for the positive feedback and to all the cushies just know that we can all connect and suffer/ progress together <3

Same girl, same dress. Stretchy clothes are the way to go!

Tapering Steroids+ Adrenal Insuffiency= Me Fainting

HORMONES AFFECT EVERYTHING. Long ass entry today =]
Two weeks ago my doctor told me I need to try to lower my steroid dosage as the less I have in my system, the more likely my pituitary and adrenals will realize they need to start working again. If I don't feel well then to up the dosage to something that makes me feel a bit normal. I went from 15mg to 10mg and boy does it make me feel sick. Who would think that this little difference would make such a huge impact to my overall health. So far since tapering, I have had a sinus infection which was so horrible I have never had one of those in my life. A cold and sore throat. And then now I am having lady problems and stomach aches. I went to see the doctor and they told me that my pap smear exam was abnormal and want to do further testing for infection.. Oh yeah not to mention I fainted twice this week.

The feeling of Adrenal Insufficiency is that the longer you go having it, the worse it feels for your body to have to do the work without the help of it's sister glands functioning. I have a dull headache, bad allergies, a terrible feeling of nausea that lasts all day. It feels like one minute I think I am feeling better then boom like clockwork I feel like I was punched in the face with the nausea. I feel dizzy. There is numbness and tingling that come and go on my limbs. My heart feels like it is working extra hard to beat. And overall I feel a sense of lethargy, tiredness, and worn down. Oh yeah not to mention my face is so tired that my under eyes look like black panda eyes since tapering.

Excuse my complaining but let's keep it real here.
I look different today? I just don't have any make up on!

Today while I was trying to make some icecream, I blacked out in the kitchen. At first I felt the tingles on my face and fingers. Then turned into numbness all over. I couldn't breathe. I felt a heavy pressure on my head that traveled down to my legs and my legs couldn't hold my body up I just fell. I have been fighting the fainting since tapering. Ever since the last incident a few months ago I've been scared. I feel the tingles when I am doing house work, when I drive, and even just standing up from laying or sitting. I try to not stand up quickly. I worry when it will happen next. I may be hovering the edge of a full blown crisis if I taper any lower.

Adrenal Insufficiency =]

  In my head I think that the less steroids I take, the quicker I recover. That is not the case. You will only hurt yourself. So, as much as I want to taper down and continue progress. I feel like this is too much for my body to handle at this moment. I know that 15mg is the sweet spot but I think I need to perhaps just take it down a notch to 14mg and see how good it does me. I just want to let others preparing for recovery that it is best to taper slowly. You cannot jump from 30mg to 20mg and so on then think you are progressing because your body will notice the difference.

 Nobody of normal health could tell you this because there is limited information about recovery but I am telling you. SLOW DOWN and let your body heal. Hormones affect everything and a recovered patient once told me that this is comes with the territory. Listen to your fellow cushies. You need the steroids to help your compromised immune system. I heard someone shaving their pills down a bit to slow taper. Now I think that is smart and what I should be doing. I really hope I will feel better when I increase the meds. Sometimes it just sucks, why us right? We get fucked by Cushing's then trade it for AI. But just remember all that you fought for. And all the progress you made. Atleast you are far away from the moonface and panic attacks. Just have a bit more patience.

^Recognize the symptoms of a crisis^

WOMAN WITH CUSHING'S COMMITS SUICIDE

I can't seem to wrap my head around this. A woman who suffers from Cushing's Syndrome kills herself by jumping off her apartment building 3 days ago. Such a tragedy. My prayers go out to her and her family.

The story is featured at New York Post:
http://nypost.com/2014/06/19/pedestrian-almost-crushed-after-cancer-stricken-woman-leaps-to-her-death/

Low Cortisol Level 1 Year Later =(

I thought I was making more cortisol but nope... As a matter of fact my cortisol levels went down from my test from 3 months ago. It looked as if my levels were raising up probably because of residual medications. I am wondering why it's taking my right adrenal such a long time to work? Oh well. It still explains alot of why I feel nauseous, weepy and fainty often.

My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient

Meet Gabriel

The year was 2007 I was age 16 I woke up like any other day went and played some games with my friends. That night, something happened. It began with a small pain in my side that grew stronger and stronger we went to the hospital thinking it was appendicitis. It wasn't after a few tests and the pain not going away they (doctors) were stumped as to what it was. I stayed in the hospital for about three weeks getting tests done and nothing was found the pain stayed the only thing that was wrong was my level of cortisol was slightly elevated.  A few months went by and many doctor visits later nothing was concluded. Doctors were doing random strange tests and nothing. One doctor wanted to start treating me for Addison’s disease which is the opposite for Cushings but they were on the right tracks. About a year went by and test after test being negative I was diagnosed with Fibromyalgia my body was exhausted and my mind was numb. After a year of testing to be told nothing's wrong really made me sick. But like always, I moved on from it. I rolled with it and I was treated for fibromyalgia with the help of sleep aid and the knowledge of certain things that can trigger intense pain episodes.  Around the year of 2009 my sister was diagnosed with a brain aneurism and had surgery. The doctors who were doing her tests noticed a small link between mine and her results .She recovered from her surgery. And began seeing an endocrinologist after a few months of testing she was diagnosed with Cushings. During this time of her surgery and testings I was trying to finish highschool and start college. The year was now 2011 I was living my life with fybromyalgia but I began getting sick I remember having an adrenaline rush and nearly passing out because of it something wasn't right we were for sure of it. I began seeing my primary doctor letting him know what was happening. I had weight gain, low immune system, blackouts and pain. The doctor’s response was I was depressed. Cool story right.

I sucked it up and dealt with it for another year. My sister was diagnosed with Cushing’s and my parents noticed we had similar symptoms and started and put two and two together. I made an appointment with my sister’s endocrinologist and she noticed right away that something was wrong. For me, I felt joy that someone was going to help. She noticed the straie on my neck and underarms and jotted down my symptoms which included bone pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin skin,  and bruising. I was text book Cushing’s.  They immediately started testing me for Cushing’s. My first urine test was the worst they have ever seen. My cortisol was sky high at a level over 70. Other family complications that happened through the year put my treatment on hold. Meanwhile my sister was able to participate in a cushings study with a medication that was new to the market called Signifor, it was a daily injection that had the chances of shrinking and stopping the growth of the tumor. After a year, her results were great; she lost weight and looked healthy. I began going back to the doctor and had more testing. My cortisol was really high around 60s. The levels made my body constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They stuck a tube into my brain to see where the leak on the pituitary is. 3 months later my results came back and the conclusion reached was that I had Cushings Disease. I had multiple tumors but none were visible. That was why my body was shooting out cortisol. My life flashed before my eyes. Years and years of waiting, crying, and testing I finally had my answer. I got into the case study for CD.

 I was the only guy in my state to be diagnosed with CD at the age of 22 and my sister 19. We were the talk of the town. Unfortunately testing requirements were very complicated and I decided not to do the study and instead go for the medications. It took a few months to get the medications since they were new and pricey. It was okay to wait since I’ve been waiting for years. After 7 weeks I got my first order of Signifor. I began taking the injections. The first injection made me vomit and I continued to vomit after for two weeks. One morning I woke up smiling, I no longer felt a lot pain in my body and my mind felt clear.  I was on the road to recovery. After 2 months of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia. I had my first adrenaline rush and didn’t pass out. My mental status is good I have always stayed positive despite what has happened. I keep my mind away from the depression. Now life is falling into place. The next thing I need to worry about is what to do in life without wondering if tomorrow will be my last day on this earth.

Chasteberry (Vitex) Extract

During the time my menstrual cycle started becoming irregular, I tried many herbs to induce a period. Like literally all of the hormone balancing herbs. One herb did work for me, I read online that Chasteberry (vitex) extract is good for PCOS and helps regulate a woman's cycle. So after 6 months of researching about it and not having my own cycle, I decided to take the pills. I forgot what brand it was but after two weeks of taking vitex, I had a period. And it came back the next month. I thought I found my cure, but after the two period cycles, my period stop coming for a year. That was the biggest red flag that something was extremely wrong. But yeah, I am not saying "hey take vitex if you want a period", please consult your doctor before anything but I just remembered that it is one of the things out there that does work during my Cushing's days. It must be a very powerful herb to work on a cushie. But ultimately, my cure is removing the tumor.

Chasteberry

Chasteberry, this one kinda looks like a blue bonnet

My Feature Story On Cushing's Support and Research Foundation

I will frame this!

So I received my spring Cushing's support and research foundation (csrf) in the mail. I was so excited to read it. Inside has a lot of interesting new research on the disease and doctors answers for questions people want to know about Cushings. I thought I knew all about it through my own research and experience but it had alot of answers and information I did not know. It also talks about cyclical cushing's which is harder to diagnose and alot of people have been emailing me about why they have all the symptoms and features of cushing's but their test are never positive. So I think that we always have to prepare for other possibilities. I am not a doctor to say whether you have it or not but I do encourage anyone to find a professional to investigate to why they aren't feeling "normal". Also the newsletter features patients stories.

Well I read this newsletter a few times and not once did I realize my story was featured inside the newsletter until a cushie emailed me saying they saw my story! Wow, I feel so honored to be chosen to share my story to csrf readers. My feature page was stuck together so I had no idea it existed but thank you Benji for informing me! I hope you are feeling better these days. I want to thank CSRF, cushies, and supporters. To help me through hard times and to share my story for awareness. You guys are everything.

Stress is not the cause of Cushing's. Having Cushing's causes stress.
 But it sure will feel worse if you're in a stressful situation!

Most Cushies suffer from bad memory, I still do.