Falling In Too Deep

During the days of my full blown Cushing's, I was really down. I'm talking about random crying spells, panicky feelings, suicidal thoughts, loss of hope, feelings of guilt and shame etc... I guess you can call that the depression that comes with the illness but it is not a regular feeling of sadness that eventually passes.. It's the kind that gets deeper and deeper and all the while you feel so low in your head, you're fighting the cognitive, emotional, mental, physical symptoms that haunts you 24/hrs a day. It's like I couldn't go out and enjoy life when everything would make it worse, even laying in bed.. It's impossible to escape the sickness. I myself was always a happy person but slowly I started to fall deeper and deeper since I was around 19 or 20 I would say I started to feel little glimpses of this darkness. During that time I would say the suicidal thoughts were not morbid but it was just a way of wanting some peace and control in my life. I wanted all the symptoms to stop but there was no way to. Medications, diet, exercise, loved ones, happy thoughts could not fix it. Nobody in my life seemed to understand.... I couldn't bear living with it anymore. The only way I thought was to put myself in a very deep sleep. The kind where I don't wake up.

I was sad and isolated from my own illness... Luckily I found a Cushing's Support group that had a list of Cushing's patients pituitary and adrenal from  all over the U.S. that listed their phone and email. Desperate for any kind of answer, I emailed all the adrenal cushing's patients for help. I asked them how they dealt with their Cushing's and recovery. I also asked them about symptoms and how to cope with everything. I pretty much had all the symptoms like they listed except some are more prevalent than others. All of the women I talked to understood exactly how I was feeling. They told me things will get better once I get the surgery and my remaining adrenal gland will start producing what it needs. They all were honest that the recovery is sometimes even worse but I just need to take my time and push through because there is a light at the end of the very long tunnel. I just want to thank all of the ladies that helped me through those hard times. I am feeling like I am at the middle of the tunnel now and am feeling better today.

I want to say that after surgery, tapering replacement too low can make you feel extremely low too. About three weeks ago I was feeling that sadness again from tapering and PMS. Luckily I talked with a Cushing's patient Marian who connected me to a girl named Jess who was about the same age as me who had her surgery a few years back. We talked several times and she is happy and healthy going to College now. I was feeling sad that I am still adrenal insufficient, puffy-ish, and guilty that i'm not strong enough to deal with a lot. Stress just makes me so exhausted. She told me not to worry because she felt the exact same way and what I need to do was not push myself and to take a break until I start to feel stronger. I also have been seeing a wonderful Nun who talks me through whatever I am feeling. She gave me some wonderful advice that I want to share with you all she said, "this is the time to take a break and find your peace. Love yourself and let God handle everything else. God wants to help you heal but you cannot heal if you do not give yourself time to. Most people do not make the time to make peace with themselves. So see that this recovery time is to give it all to him, the pain, symptoms and you will have peace." eversince speaking to these women I have felt like a huge weight lifted off my shoulders and my days have been brighter eversince. Thank you everyone! This is great advice for anyone sick or healthy. I am starting to feel some peace and control again. I am not fully there yet but I am glad I am feeling awake and somewhat snapped out of the living nightmare called Cushing's.

There's not much but to wait it out during diagnosis, surgery, and recovery but here's a helpful link:
How to Cope with Cushing Syndrome or Disease

You're Finally here! I've Been Waiting For you...

Finally Aunt Flow came to visit!! Yes I am telling the world! After years of long distance relationship she decided to come for a surprise visit. This is too soon to tell if it's a rogue period so I will wait and see if it will start to come monthly again. But I am happy! It's funny how most chicks take their period for granted because it is a monthly annoyance but any former Cushie gets so excited for theirs. We gotta remember that our periods are a signal of fertility and health. Sure back then I liked having less but it was a huge red flag that something was really wrong. I told my family that I would throw a period party and everyone has to wear red lol but I think I will wait for the next one just to make sure I am not jumping the gun. Plus I am feeling soooooooo tired. let me explain...

 

 

 So lately I've been feeling all sorts of  "hormonal" which is just a nice way of saying I'm feeling crazed and dazed. Well for one, I was starting to try to taper down a bit after feeling somewhat okay these past few weeks and after a few days of tapering down the steroids. I started feeling extremely low and dizzy. I literally felt like crying every waking moment and I was overwhelmed everywhere I went and everthing I did. I couldn't understand why... I got that summertime sadness...Then a few days ago my boyfriend said that I've been really acting off and he started to question if I have been trying to taper down myself again. So I admitted yes I have been for a week now and basically I got scolded for tapering down without the doctors consent and now I am back up again... I have to agree that Muffin was right about this one. I feel MUCH better on a higher dose. This is hard because after years of my adrenal gland tumor producing way too much steroids, even taking the physiological dose is scary to think about. I heard many people get pseudo Cushing's even on a low dose for a long period of time so of course any Cushing's patient would not like that idea... But anyways I think I'll be okay with this higher dose now. I just need to let my body do it's thing.. My thought process is still strange since I truly believe that if I go on the lowest dose I can deal with, that my lazy lefty will feel challenged and start working again but I have learned this is not a good idea the many times I've tried to taper down. Anyways, I guess doctors and loved ones knows best.. This week I have been so sore and achy. I have been having  many digestive problems ever since the surgery and I am feeling tired. I woke up at 3pm today... My feet feels swollen again and my lady lumps are crazy swollen too I cant sleep but I guess that's what happens during this time of the month. It just feels magnified. But you know what? I'll take any of this pain if that means it's part of me recovering. Thank you Aunt Flo!

 

                                        ^ I think she's singing about her period