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Cyclic Cushing’s Disease Network provides education and support for Cushing’s Disease Pituitary Tumor suffers,
patients in recovery, plus family and friends.




§Disclaimer: The information and resources contained on this site are for your reference only.
No responsibility for any medical or other treatment or activity undertaken by the public,
and no endorsement of products or services, is given or implied.
Pat’s Story

Recovery from Cushings Disease

I am a Cyclic Cushing’s Disease survivor, thriver, and Counselor for Cushie patients. I had Cushing’s Disease pituitary tumor surgery in December, 2003. See my story here: Pat’s Journey

This harrowing experience solidified my dedication to assisting others on their journey to better health. I am here to provide guidance and solace to those who are suffering.I offer help and hope to patients, family and friends. Through support, referrals, resources, and sharing my healing process, I offer suggestions to help make your transition more manageable.I hope to be a flashlight in the dark for those who find this website.

I created a Facebook page (see below) for those who are seeking help with Cushing’s disease and guidance with the recovery process. I have learned to manage my own symptoms using pacing techniques and self-regulation tools and would like to share this process with you. I have created a healthy lifestyle program and will be posting tips and information to help others on my Facebook Page. Additionally, I network with a complimentary care team who offers acupuncture, massage, hypnosis, acupressure, Internal Family Systems, Neuro-linguistic Programming, Matrix Energetics, Somatic Experiencing, meditation, Touch for Health, music and art therapy; plus other programs that offer alternative ways to help Cushing’s patients function optimally. These programs saved my life and I want to pass this information on to you. Please share your alternative treatment experiences on my Facebook Page, especially what works for you. We are all here to help each other. Let’s come together as a community!

Pat has a Medical Director and a Nurse Advocate helping those with Cushing’s Disease on her Facebook pages and website:
  • Huy Hoang, MDnaturalhealthmc.com, is the Medical Director of my Cushing’s Facebook Pages.
  • Laurel Eisenschiml,  RN, MA,  is the Nurse Advocate of my Cushing’s Facebook Pages. A Psychiatric Nurse and Hospice Nurse, she will be directly communicating your medical questions to Dr. Huy Hoang.

Personal Experience

What was my personal experience? Well, I had a Macro pituitary tumor, which doctors believed resided in my pituitary for over 10 years. It had changed my body, causing gallbladder disease, fatty liver, premature menopause at 35, blood sugar problems, muscle wasting, hirsutism, broken bones in my feet, body was unconditioned, osteoporosis – to name a few. So the road back to health was cyclic, causing great emotional and hormonal changes.

After surgery, there was a decrease in my extra body hair, and the cherub features went away. I felt more human again! Medications helped at this stage too. Please consult with a medical doctor regarding useful medications and a nutritionist who can suggest helpful supplements during your recovery. With a lot of help from complimentary care practitioners assisting me with diet and gentle exercise, it took about a year to lose the excessive weight after surgery.The withdrawal from cortisol was hard for me after surgery, as well as the few incidences of adrenal failure the first year. However, not all patients experience my trauma. I walked with much difficulty the first 6 months, hands constricted like claws and I had to have hand therapy for almost a year. I also was on an anti-depressant to support my body through this crisis. That was 7 years ago.

Managing Changes after Surgery

For the first year after surgery, learning how to regulate my body was my main focus. I utilized various home programs to assist me, for example www.wilddivine.com biofeedback program. It helped me navigate my body sensations – very empowering.

Feeling like a sensual woman again was another goal of mine. I explored gentle Tantra practices with my loving partner to enhance my sexuality. It gave him a way to support me during this process, and rebuild our intimacy. See Diane Richardson’s delightful Tantra Sexuality books: www.loveforcouples.com/en/books.html

I recommend women seek help from a gynecologist to increase the libido through hormones, or consult with your endocrinologist regarding human growth hormone, thyroid hormone, and so forth, as your hormones will change and need to be checked regularly.

In my case, I found changes continued to occur for a while after surgery. I learned how to “ride the wave,” as I call it. It really is a type of surrender. My body had been use to high cortisol levels and as the hormone decreased in my tissues and joints, I felt emotional and physical changes such as depression, agitation, fatigue, cognition problems and sensitivity to lights, sounds and smells. The consequences of high levels of cortisol, year after year, left me with central nervous system damage, which was a shock to me (occurs in all cases of patients with Cushing’s, by the way). The massive dosages of cortisol affected my moods and responses to people and situations in my environment. My reaction to outside stress and internal stress was chaotic. It was frustrating for me, and I had to learn how to live within a disabled body. Before and after surgery, I had to figure out how to manage my limited functioning.

Profound Learning Experience

Please know I am sharing my personal experience – what I call a “Profound Learning Experience.” Your journey is quite unique. During my surgery, I had a titanium mesh put in my brain due to spinal fluid leakage at the surgery site. That complication took a few hours more to get under control, not normal pituitary/Cushing’s surgery. I had a Macro pituitary tumor and trauma during surgery. Your experience is individual, and your surgery can proceed more smoothly than mine.

Recommendations

Do acupuncture and other modalities to help support your immune and neurological system. Reach out to reputable healers to assist your recovery process. I have many protocols and health care providers I trust listed on my Facebook Page (look at older posts too) who can help or refer you to someone in your area.

In addition, I recommend you look at your relationship with yourself, which will continue to be challenged as you heal. Accepting the body/mind changes you experience with compassion, and implementing a meditative lifestyle, will help you achieve a sense of sanity during your recovery process. Rather than fighting inside yourself, trying to control your condition, instead consider supporting yourself through your struggles. Old conflict issues, I believe, surface when in crisis. Having good coping skills will benefit you, especially seeking help from a counselor to explore your conflicts and ways you problem solve. Counseling will help you adjust to the ensuing body/mind changes. If you parent yourself lovingly, using kind self-talk (www.thework.com, Byron Katie guidelines), tender support, and learn to be at ease with your healing process,this will be helpful. Of course, it will be a bit of a roller coaster in the beginning, but you will adjust.

You will need to take hydrocortisone or something like that for the first few months to a year or more. Some of you will need to remain on cortisone medication forever and face Diabetes and other challenges along the way. Reach out for support during this vulnerable time to assist you through these challenges. You will continue have Cushing’s tests every 6 months to a year, usually for the rest of your life. Your medical doctor can guide you on this topic.As mentioned, I recommend you have a medical and complimentary care team of practitioners onboard to help you before and after surgery. Plus, a hypnotherapist to help your body and mind get ready for the surgery, or you can find CDs for surgery online if you search the internet. I recommend this practitioner if you would like a personalized CD made for you: transpersonalhypnotherapy.com

I am also available for Lifestyle Counseling, developing a customized home program especially for you. I am here to help you prepare for surgery, adjust to your aftercare program, get on track with your recovery, and help you adapt to your body/mind changes down the road.

Partnering with a Healthcare Team

I highly recommend you include a healthcare team who offers alternative treatment too. Help your body shift through this process with more ease before, during, and after surgery by reaching out to an occupational therapist or physical therapist, healer, counselor, somatic experiencing therapist, acupuncturist or gentle acupressure practitioner, compassionate masseuse – to name a few.

I brought in a whole team of practitioners when I was hit with Cushing’s disease. At first, I felt strange asking for all this help, as I was always the giver and helper (psychotherapist), but now I was the one asking for assistance. I explored at my co-dependency and control issues. I noticed I was experiencing overwhelming feelings of hopelessness. I looked at my ‘inner child’, the vulnerable little girl part of me that felt helpless, and realized I was emotionally triggered and frozen inside from the trauma of this ordeal. I educated myself on my body/mind relationship by using the Biofeedback Healing Rhythms program from http://www.WildDivine.com I decided to explore www.SelfLeadership.org to help me communicate with my pain body. Plus, I enlisted a reputable intuitive, www.soulsongtherapy.com to help me keep my spirits up. Spiritually, I prayed to God, and Angel Michael. I used meditation practices I learned through www.boulder.shambhala.org to support my inner world. I hired a Jin Shin acupressure massage therapist who also offered Internal Family Systems www.selfleadership.org, plus a Somatic Experiencing www.TraumaHealing.com Physical Therapist who specialized in chronic illness and pain www.mindbodyphysicaltherapy.com, to help me connect to my body. I utilized Dr. William Collinge’s CFS Lifestyle protocol from his book – free online here: collinge.org/Cfs.htm, and applied this to my recovery plan. I also utilized these pacing and self-regulation Suggestions from www.fatigueanswers.com/cfs.html , which can be applied to Cushing’s disease too.

At the same time, I was working with a counselor to create a treatment plan for my recovery, helping me along the way to adjust to the lifestyle changes that were necessary to live a meditative lifestyle, and to help me grieve the physical changes and losses that had taken place.

I also took a pair of Teleclasses which assisted me in energetically functioning in my changing body, which I recommend to you:
101 Self-Healing Teleclass
102 Energy Awareness Teleclass
I took these GREAT Teleclasses through Boulder Psychic Institute. You can take these classes from the comfort of your own home. They are simple to follow even if you feel sick and brain-compromised. I also suggest you have a healer, such as Miwa Linehan, Medical Intuitive and owner of Boulder Psychic Institute, give you a healing session before surgery, distance healing during surgery, and healing after surgery (faster wound healing in my case).

I also learned about Epigenetics, the new field of Science meets Spirituality, to assist my healing process. See www.BruceLipton.com and The Biology of Belief. Please also read, “The Physics of Miracles” by Richard Bartlett, DC, ND, to learn about Matrix Energetics. Matrix Energetics has been so helpful in my Home Healing Program, empowering me, so much so that I became a Certified Matrix Energetics Practitioner. It gave me solace, grace, zero point, peace and all possibilities in the next moment. I offer these healing Matrix Energetics services to you (In office, Skype, phone, long distance healing), as well as my Cushing’s counseling expertise.

THERE IS LIFE AFTER CUSHING’S DISEASE!

Today, I can hike in the Colorado mountains, drive a car with ease as my hands are fine now – I can twist open bottle tops and make my bed. For someone who had Cushing’s with muscle aches and joint pain, weakness and wasting, surgery was a blessing for me after years and years of being sick and disabled. Slowly, I started to get my life back.

Yes, I wanted my old life back, where I could work during the day, balance my relationship, take evening classes, go to events on the weekends, exercise and dance…Well, that type of high life ended with this illness. Was it better or was it worse? From a Human Doing to a Human Being, it was a true ‘integrative awakening’, www.integrativeawakening.com, experience for me. I would say my life is different. But, working with a Matrix Energetics Practitioner helped me transform my mental attitude. I could choose to see the darkness of my situation (the problem) or focus on the solution, with gratitude.

What was my part in my healing process? I eagerly reached for that answer and hired the above healthcare providers to help me in my recovery. I surrendered to the experience, rather than fighting my fear or anger. I reached out to those who could support me through this process. I learned how to receive, and put my needs first when it came to my health! Though I felt my identity had been ripped from me, betrayed by my body and mind, I realized I did have a choice point in how I wanted to go forward. I noticed what felt better for my recovery: focusing on the good or focusing on the bad. I received the kind assistance from others quite graciously, even having a maid come to clean my home and run errands. I accepted help with much appreciation and found peace in the eye of the storm. I changed. I adjusted. I focused on gratitude. I worked though my emotions and changes in therapy. I thanked God for all the referrals and resources that came my way, and celebrated with deep gratitude being alive, surrounded by those I loved and who loved me.

This has been a spiritual experience for me, learning to surrender my life over to God. I sure couldn’t control Cushing’s Disease, cortisol gone wild and the tumor in my pituitary. I had a number of consciousness awakenings in 2010, when I experienced my last Cushing’s health crisis. Once again touching on death, I survived! What a miracle! I truly learned what human resiliency means, to the core of my soul. I am so grateful to be on this earth, with my loving family and friends by my side. I feel blessed. I live a meditative lifestyle these days, appreciative of the moments when I notice a blossoming spring tree, or a cute bunny rabbit running through the green grass. I took a gentle walk today, smelling roses along the way, glad to be alive!


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Articles

We are always searching the web for the best articles about Cyclic Cushing’s Disease. If you know of an article that you would like to recommend, please contact us. We will provide an excerpt and a link to the complete article. Articles available now include:

Cushing’s Quality of Life
An excerpt from “Quality of Life after a diagnosis of Cushing’s syndrome”, by Alicia Santos and Susan M Webb, MD.

Depression and Cushing’s
Information about the link between clinical depression and Cushing’s Disease.

Dynamic MRI Imaging
An article on Dynamic MRI Imaging, and how it can help you detect tumors and Cushing’s Disease.

Insurance
Help and resources for issues with medical insurance.

 

 

Found an article you feel should be included? Please let us know!


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