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/