My Hair Has Been Electrocuted

Hello! Sorry it's been a while since my last entry but I just wanted to talk about our physical appearance during Cushing's Disease (CD) and going through Adrenal Insufficiency (AI) As all of you patient's know. The physical changes are so severe that even the most confident person would feel insecure. I want to talk about hair this time.

I've been trying to grow my hair out since my last haircut a few months ago. Lately I have been distracted examining my hair. For the past few weeks I have been noticing another change in my hair texture. When I had CD my hair was falling out, I had some bald patches in the front and overall was thinning. It was oily so It was still soft and shiny though it was very thin. I noticed that after surgery, My hair started to regrow and fill in the bald patches however the new hair growing in is very course, dry and rough in texture. It is still fairly thin as my ponytail is a measly half fistful and now it looks dead and dull. I traded the balding for courser crinkly hair. I am not sure how I feel about this, other than I am completely distracted with how it feels. Almost like I've been electrocuted lol

A bit worried, I talked to my friend and she confirmed that the hair issues are from steroids and possibly AI. And her hair improved when fully tapering off. I hope in time my hair will start growing in better and healthier. Not only are we plagued with waiting for our health to get back but we have to be patient for our appearance to get normal. But Don't worry about it Cushies! Worst case scenario is that we could shave it all off lol just kidding >.<

As my lesson in health and recovery continues, I realize that the best way to get through these changes is to let go of our attachments to things in our life such as the past, the way we use to look, anger towards things we cannot change, material items and the way other people view us. Yeah that's a hard pill to swallow being a 25 year old girl/woman who is vain as the mortal version of a Kardashian. But I must remember that things were worse and now getting better. I almost forget that while comparing old photos pre CD, I look better now because I have some kind of inner self esteem I discovered during this whole process. It helps me to feel comfortable in my own skin and accept myself regardless of how I look. It kind of just radiates and people seem to approach and say hi to me. Unlike before people seemed to stare at me for the way I was dressed or the ridiculous amount of eyeshadow I wore lol OR maybe, it's because I seem happier :D

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^

Feeling Better? A Good Surprise

Alright I'll admit I've been bad since my last entry.. I got curious to how I would do on a lower dose of steroids and self experimented. I took 27mg umm let's just say I didn't do too well. Yes I'm stubborn lol, although I'm not dying so I think I can handle it. I'll just keep it that way til the next visit to the docs which is in a month or so? Supposedly the magic number to stimulate the adrenal gland is 12-15 mg. I still have a long way to taper down... I think I might be feeling better? I see some improvement on some things and less in others. I guess I need to feel or see a huge difference to believe it but I am now livin life in the slow lane lol. We had some unexpected house guests this week.. lol

Vankey, Fatty &       ^^Tiny

Ever since the operation I haven't been feeling well or keeping track of the days going by. Yesterday there was a knock on the door I thought it was some delievery package and it was my best gal Jessica  holding some beautiful flowers. I forgot we planned months ago that she would come back one last time from Maryland to visit and I even wrote it down on my memo. Blame it on the short term memory! lol.. This will be the last time I see her for a while since she's in the airforce and will be relocating to Korea then Japan. I wanted to make a little memorabilia collage for her and found some old pictures of us through the years. Looking back at old photos is funny, I looked so dorky in the homecoming picture and what was I thinking going so blonde!! lol x]

2004

2006

2012

Today

I will miss her, & so proud of everything she's accomplished!