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

Hello Bones!

I know that the word bone sounds kinda morbid but I have to share the delight I have found these past few weeks of improvement. The other day I looked in the mirror and saw my collar bones again! It's crazy that during Cushing's I had no kind of collar bone, spine, cheek bones etc... But now all of those bones are visible again. I am starting to have a normal shape back. Yes, it is still very slow but I can no longer deny that I am improving. My tummy is getting so flat and my butt is getting rounder and I have not diet or exercised since the surgery! I have lost 5 lbs somehow. Trust me when I say I have been snacking on junk lately. Carbs, sweets, fried foods, the whole shebang. My appetite has suppressed a lot but I can eat more and not feel that weird panicky feeling. The other day my family members commented on how different I am starting to look since the surgery. My eyes look more awake and my lips are getting plumper lol and my chin is more visible. Idk how to explain all of these changes. Maybe it's no more water retention? Hormones balancing out? It's funny how when I was sick I dieted and exercised like crazy and nothing really happened. Last year I did insanity workouts and ate lettuce for 3 months I lost around 5 lbs but I gained it all back within a few weeks it was so strange, then after that I tried to continue working out and eating healthy but the inches and pounds kept adding up. Nothing I could really do about it. I remember I looked in the mirror and did not recognize myself but now I am starting to see a glimpse of myself again. I later just gave into the Cushing's instead of fighting it because I was so exhausted about all the worries and needed a break.

I am still super tired but that is fine with me. I'll just continue to rest until I physically and mentally feel better. The other day two of my incisions got infected and was leaking pus it was gross and painful but I cleaned it and noticed the stitch threads were poking out so I pulled them out.. It hurt like a b***** but my surgeon directed that I keep an eye out if it worsens. My skin is improving more also but that definitely takes time since I am slow healing. Still get weird bruises and scratches out of no where and tried to start exercising but bones still hurt. I still get the fatigue and moments of feeling crappy but it is not an all day thing now. Still have not gotten aunt flo. The docs prescribed me some bcp but I tried taking them and felt like dying so I stopped. I guess I'll continue to have to wait it out some more. I should do a whole body pic before & after but I don't have anyone to take the shot so I'll just post up pics of my collar bones!


w/Cushing's syndrome/ no visible bones

Collar bones yay!

Chipmunk Syndrome

Cushing's syndrome is a lot like this lol... I do find myself eating a lot of pistachio nuts

How do my cheeks look?

 

Endocrine Article Abstract: Improving concept of recovery in endocrine disease by consideration of psychosocial issues

Improving the Concept of Recovery in Endocrine

Disease by Consideration of Psychosocial Issues
 Nicoletta Sonino and Giovanni A. Fava

Stringent criteria have been established to define remission

by hormone parameters in several endocrine disorders.

An example is provided by the criteria for cure of

acromegaly (1). However, it is clear that such criteria are
far from being comprehensive of a patient status, and often there is a need for filling a gap between the “hard data” of
laboratory results and imaging findings on one hand, and the “soft information” related to the patient presentation
and complaints on the other hand. Indeed, long-standing
endocrine disorders may imply a degree of irreversibility
of the pathological process and induce highly individualized affective responses based 
 Hormone replacement may not fully restore optimal
endocrine balance, and subtle dysfunctions may still exert
their influence on psychological states.

When surgery is performed

the patient is likely to have expectations of a
quick recovery toward his/her former normal condition.
Unrealistic hopes of “cure” may foster discouragement

and apathy.

Harvey Cushing himself had acknowledged

the difficult recovery of patients suffering from pituitary
disease: “It is even more common for a physician or surgeon
to eradicate or otherwise treat the obvious focus of
disease, with more or less success, and to leave the mushroom
of psychic deviations to vex and confuse the patient
for long afterwards, if not actually to imbalance him” (5).

Currently, however, the average endocrinologist is still

unfamiliar with the psychosocial aspects of patient care,
both in terms of personal skills and organizational structure,
and lacks an adequate background for facilitating the
process of recovery.
 

Indeed, the definition of recovery

in endocrine disease should not be limited to
normalization of hormonal values, but should be broadened
to the psychosocial status and functioning of
the patient.
 Patients have become more aware of these
ssues and their difficulties in coping with endocrine
illness, and its often severe psychological consequences
have led to the development of several patients’
associations.

The psychosocial impairment that is associated with

incomplete remission from endocrine illness requires
novel modalities of clinical interventions, as we outlined
by introducing the concept of rehabilitation in
endocrinology (7), to allow patients to progress toward
an optimized state of health. Rehabilitation in endocrinology
may be indicated in the following cases: 1) delayed
recovery after appropriate treatment; 2) discrepancy
between endocrine status and current functioning;
3) presence of a decline in physical and social functioning;
4) persistence of important comorbidity, with special
reference to psychiatric disturbances; 5) abnormal
illness behavior; 6) problems with lifestyle and risk behavior;
and 7) potential role of stress in endocrine disturbances.
An endocrine rehabilitation team should ideally

include a trained clinical endocrinologist, a physical

therapist, and a psychologist, with opportunities for
other specialist consultations. The role of the psychologist
would be essential for a more precise definition of
the patient’s psychological symptoms, for understanding
coping difficulties, for modifying risk behaviors,
and for offering advice and support to spouses and family
members of patients undergoing the various phases
of illness. The goal of multidisciplinary approaches
would be to ensure education, support, and specific interventions,
helping the patient and his/her family to achieve optimal coping with the difficulties of the recovery
process (7, 8).
 
^^Yes I agree 100% of this article. Not only do hormone values need to be evaluated but also psychosocial status too and a rehab team is a must!

Undiagnosed, Untreated, Unheard

The other day I talked with my surgeon and doctors about how my symptoms are still persistent and they told me in most cases it is always a delayed recovery. They say most symptoms will have a significant improvement after 6-12 months. That doesn't sound too bad from a normal perspective, but having to live with it everyday makes it hard to tell if you're getting better, then when it gets real bad you just feel like it's never going away. From what I read on researching this illness, most patients go undiagnosed, untreated, and unheard for so long then after they have the surgery, they go unheard again. Luckily I have my surgeon who is educating medical students about Cushing's and listens when I complain. He sent me some new endocrine journals and articles about long term studies and evaluation of the disease. It talks about how there needs to be a better way to improve the recovery process because it is tedious for the patient and often after the surgery, the patient is expected to be "cured" however they have to deal with all the difficulties of recovering themselves. the other study talks about all the issues that come with the recovery and how symptoms improve. there's more interesting things discussed so I will post it up. In my opinion there definitely needs to be more support for Cushies after surgery from the Medical care that may help them feel as comfortable as possible. Maybe requiring more followups, requirements for psychiatric assistance, and some kind of better booklet that tells everyone what to expect after because it just seems like every person I've spoken to were unprepared for the long road after surgery. Oh yeah they totally need to update their booklet for symptoms!!

 I told my doc that I use to have dark orange tinted hands that even my bf noticed. The doc told me that only pituitary patients get the orange hands and not the adrenal patients... How is that possible? well it is the same illness, just different area of cause but idk doctor, my hands are not tang tinted anymore post surgery, just believe me and take note please... I did read somewhere that another adrenal patient had orange hands so it has to be a real symptom... I told them how tired I've been feeling and asked if it's related to the blood test and they say "possibly, but we are not sure". No disease or syndrome is "one size fit all" because some patients may experience much different symptoms than others but it is all real and needs to be heard. This disease is hard to understand but we need more help to unravel this mystery! Ahh this sucks.. I tried to post up the endocrine articles but it can't be shared and you need a membership to access these files.. Ok I guess i'll just put a link to a story about a woman named Shannon. Her story is another one that gives me strength, you gotta read it till the very end.
  http://cushingsdiseasestories.com/

Things Not to Say to A Sick Person

The other day my sister and I were having a discussion and she told me that somebody who she knows-- let's call her Suzie (I'm trying to keep it anonymous) suffers from a behavior disorder, and one day Suzie told my sister about her condition to explain why she is the way she is and she cannot help the way she acts and feels. She said that the disorder takes control of her thinking and she takes medication to feel stable because she tends to have anger issues and a lot of misunderstandings due to her condition. Well my sister listened to everything Suzie had to say and my sister then said "I'm sorry I understand and know how you feel" then Suzie got really mad and angrily responded " How would you understand or know how I feel?". Of course my sister apologized again for it and tries not to say anything that could be misconstrued to Suzie again.

My sister then later came and talked to me and told me what had happened with her and Suzie. I then told her that the saying " I know how you feel" or "I understand" is my trigger too lol I don't know why but I guess a healthy person cannot fathom at all what a sick person feels or goes through on the daily and so they cannot say those kinds of things. I know that it comes from a place of sympathy and empathy but In my opinion the sick person wants to just talk and let out some steam from their condition and what they really want is just a lending ear from someone who cares. So my sister asked me what can she say or cannot say to a sick person. And I told her, The sick person doesn't want any kind of advice or suggestions so don't feel the need to give any tips unless they ask for it.
For example: you shouldn't say, "why don't you try (blank) it'll make you feel better" because the sick person would think "well you think that if I did such and such I would suddenly be healthy again?!"
 then you say"things happen for a reason" the sick person would think "so are you saying I got sick and got tortured mentally and physically for some kind of reason?"
oh and my #1 favorite is "You must feel (blank)" --why is that the worst thing to say to someone? because sick or healthy, nobody likes to be told how they are feeling. nobody knows how they feel except for the person living it. I would never want anyone to have this illness but if you can walk a mile in my shoes, then you can say that or whatever you want.

lol so I was reading other blogs from other chicks with chronic illnesses and found some funny quotes and lists of things not to say to a sick person. I'll post it up. Well thanks for reading and remember not to say these things:



(I wouldn't wish what I have on anyone, but unless you get it, you just don't get it)

 

 

 

I love pugs