The Lowest of Times - Demons Come back to Haunt

 

During this time, a friend of mine was going through her own battle with a relatively unknown medical condition that was causing her excessive pain.  She was unable to function in her daily life as her pain levels required high doses of pain.  Her doctor was unable to help her.  They were exhausting every treatment available and she was almost without hope for help. 

 

I found solace in conversations with her.  She seemed to understand my agony.  She seemed to connect to what I was feeling and she understood the battles I was having with some of my darkest demons. 

 

I was overwhelmed and unsure what my future held, and I couldn't imagine that my husband would feel any better about the whole thing.  The more I focused on it the worse the nagging voice in my head became...the bigger the demon was...the more I worried. 

 

Below is an email exchange that I shared with my friend.  Some of the more delicate thoughts have been removed to protect her,  Her thoughts are noted in black and responses are bold in purple.   

 

 

An email dated August 2007:

 

Dear Autumn,

I know what you mean. Sometimes it's just too difficult to think of doing anything. I have to make myself get up in the morning because if I don't, I'm afraid I will never be able to get up; if that makes sense. - That TOTALLY makes sense to me. There are some days that I just can't so anything despite wanting to...and then I just feel guilty for not doing anything and that makes me feel worse. It is a never-ending cycle. 

I'm not certain there is going to be an answer. A colleague of mine once told me that she didn't believe they would find an answer to my conditions in my lifetime. I didn't want to believe her. Now, I'm beginning to think she was correct, and that makes me very sad. I'm sorry that someone was so blunt and hurtful with her statements. I know that sometimes things are bleak...that is the nature of the game when you are facing something so painful and relativley unknown to the Doctors....but that doesn't mean that we don't need our friends and companions to be positive for us when we can't. When I was reading your thouhts about how sad you are , I was wisked back to the flood of emotion and awful feelings that I had this past June when my Dr. told me that it wasn't going to "get better" and that things weren't every going to "go back to mornal." I had be clinging to those words for so long. I kept pushing thru all the tests and dr visits and pain and depression knowing that if I could just make it thru this one more thing, that "better" and normal were just on the other side. I cried and felt my heart break when they said that it wasn't going to go away or be better and that "this" was my life and that I would always deal with this. I was devistated. For about a week all I did was cry. I was angry..."WHY ME? What am I being punished for?" I was scared..."What if Doug gives up and just leaves...He has put up with so much, how much more is it fair to ask him to endure? And what will I do without him?" I was pissed off - "Why can't you fix this? Why can't they figure out what went wrong? It was ok, and then it wasn't and they just can't figure out why? What the HELL?" I had a hard time getting my head around all that and it was even harder to figure out where my existance fit into all this MESS...and quite honestly, I'm still not sure. BUT...I'm learning that there is no point in dwelling in what was...I have to go forward. AND take each day...one at time...realize that I'm not capable of being strong all the time and letting go. Who knew that relaxing and letting go was so difficult!?!? As for thinking that things are hopeless and that there won't be a cure or a medical development in our lifetimes that will help us....you can never think that...you have to continue to believe that your experience has a meaning and a purpose. I have come to believe that maybe I am supposed to help create awareness. Maybe sharing my experience will help others not suffer as I do. Maybe, if it is only one person...maybe it will make a difference and that is the hope that I carry...that hope makes me go on.  

The physical therapist I saw in Fresno said that she just didn't think her treatments (I've had six of them) were not going to be of much help. She just kept shaking her head, like she just didn't know what to do. After the sixth treatment, which caused such a huge flare up of pain for several days, I didn't go back. I just can't live with that much pain because I don't take any meds that help pain. I can't even describe it when it's that bad. I can't imagine what you go thru...it makes me just cringe to think about it. You are amazingly strong!

So, as the saying goes, "no rest for the weary." I'm sorry that you feel "weary." I hope you know that we wish you peace and calm and that we send thoughts of comfort to you all the time!

And, as the title to the late Gildna Radner's book said: "It's always something." 

I wish you many blessings, healing of your health, and peace of mind. Please take care. Take care of yourself too! I'm always thinking of you and wishing you a pain free day!

August of 2007

A reply to a concerned friend via email August 2007:

First of all...I am so sorry for not replying in a timely manner. E-mail has been difficult for me lately. I just can't remember to check it and then when I do, I get so over-whelmed.

THANK YOU for thinking of me and taking the time to call. Doug said that he spoke to (name omitted) recently. That was so kind of you both to think of us.

I spent 10 days at my mom's house and just got back in time to go to the Dr. appointments that we had scheduled here. Now I'm paying the price...I'm just so beat! I have about 4 hours a day that I feel like doing anything and the rest of the time I just want to sleep...But I'm hoping it is just a result of all the activity...and I will get back on a schedule and feel better.

As for my recent Dr. appointments...They went well. I had prepared myself for the worst and that pleased to walk away feeling more positive than anticipated. Our big consult with a couple Dr. to talk about our options and their opinions and to discuss our thoughts and such on a treatment process was very informative and helpful.

Here is the gist of what the appointments and consults came down to: My condition and the reactions that I have are new to these Doctors and most doctors as CUSHINGS is rare and much of the endocrine system and the hows-whys are a mystery....and as there are so many variables, there is no way to know what exactly caused my initial problems and we may never know. Additionally, there is no "standard" in which to compare to...and any Doctor that says so, is not worth his salt. So...knowing that there is no way to go back and recreate a pattern to know why and when, we have to move forward. We Doctors are fairly certain that it is not Addison's Disease. From the test results they were however able to conclude that I am in fact GROWTH HORMONE deficient. There is a replacement therapy for this, but as an adult, the risks out-weight the benefits. My blood sugar reacted as it should have which takes the concern for diabetes out of the picture. That is GOOD! The problem occurs when you start looking at my cortisol levels. YES...that same little booger that caused the tumor to begin with. I used to produce too much, and now I produce too little. Somewhere along the line, my adrenals are not receiving the correct signal from my pituitary to produce what they should. Maybe because the pituitary was scarred and injured in the surgery and removal of the initial tumor. That means that I am faced with two types of treatment...one that could mask the problems, maybe make me feel better, but could have some detrimental long term side-effects that may, in the end, cause another brain tumor and really not fix anything. The second option is to try and give my body some more time to balance and correct itself. We try to changing up my meds a bit...the same stuff that I'm taking now but a stronger dose to hopefully give me body a chance to do it's own thing....balance itself. Our Doctor is hopeful this will work as my body is showing some reaction, however small in the tests and may mean that it just needs more time to do it's own thing. SO....that is the direction we are going to try....The more intense treatment....our other option, we are putting on the back burner for 3 months.

SO...I am pleased with the understanding and open sincerity with which these Dr. are communicating with us, and I feel that I have a better grip on my reality right now than I have had in quite a while.

That being said, I'm feeling a bit tired and worn already with the change in meds...I'm having the common reaction to the change in meds that we anticipated...It may take my body a couple weeks to adjust, so I've just got to ride out the nausea, vomiting, spins and the crazy intense diarrhea...sorry... that was probably too much info....but CHRIST....it isn't pretty. I'm awake at night and exhausted during the day. Any time I'm awake I'm dizzy, having intense hot and cold flashes followed by the "urge to purge" AND, my ass hurts! :) I guess there is a bit of humor in the whole thing if you consider the picture that must create! :)

So....that is where we stand right now.

We are so thankful for your concern and caring. Going through so much yourself, we appreciate knowing we are in your thoughts and likewise hope that you know you are both in our thoughts and prayers always.

I hope that you are finding moments of peace in your own journey that you can enjoy.

Love and hugs!

~A

Adrenal Insufficiency (AI) - Rock Botton in 2007

And the hits just kept coming.  I composed and sent this email to friend and family in July of 2007:

Hello Dear Friends!

I know that I’ve been neglectful in staying in contact and I apologize, but as per the norm, and as it is with everyone, things are always busy. 

 

Honestly, I have procrastinated in writing this email for a couple of reasons. First of all, it wears me out and depresses me just to think about it. Second, and what weighs most on my mind is that I know hearing of my health issues is getting OLD! Trust me…I’m at the point myself of not being able to face much of anything right now without tears and an immense amount of frustration.

  

Some of you may know that I have been in and out of the ER, Dr.s offices and having all sorts of tests (some rather brutal) done for the past month. Others of you may not even be aware of that, but that is because we haven’t really shared that info with too many people. Again, we understand how busy everyone is and that you all have your own “stuff” going on to cope with.

 

My Endo had been struggling with trying to figure out WHY things aren’t fixing themselves and balancing out as they should. They have been very thorough. I even got FOOD allergy testing done recently. That being a bright spot in the latest results, we found out I am not allergic to any major food group and had no negative reactions to many of the others we tested for! THANK GOODNESS! Food allergies are so hard and I have plenty of other flora and fauna allergies to deal with!

 

The most recent testing that I had done was designed to induce seizures, immune system, and endocrine system failures in a controlled environment under the very watchful eyes of a gaggle of nurses and 2 physicians. I was not crazy about the idea, but this type of testing it much more accurate than simple blood work and the panels that we have been doing.

 

The results of these tests were not favorable. Bear with me here as I try to explain. First of all, and our bright light in the whole thing –

 

My sugars - they maintained fairly well…good and level. That is great news as we can eliminate Diabetes from our immediate concerns.

 

However, the results associated with my endocrine and immune system, growth hormone, as well as my pituitary and adrenal function were not so cheery. This is an overload of info, so maybe I’ll explain this bit by bit….

 

Growth hormone – this was not responsive meaning that my body is not secreting any on its own. This is not something that can be supplemented. The risks out weight the benefits for adults. This helps explain why after working out at the gym, or after physical activity, when others would feel energized…I am falling asleep.

 

The tests results also showed that I am severely Adrenal Insufficient. This is our major problem. Adrenal Insufficiency is pretty scary, especially at the level in which I am functioning. My body was producing too much cortisol before my surgery and now has flip-flopped and is not producing enough. This means that my body is unable to cope with any and all stresses….Physical – such as muscle fatigue from yard work, working out at the gym, getting over hearted, or even just over-exerting myself in any normal form. Chemical – this refers to any form of stress related to my immune system and viruses, allergies, colds, anything that could cause your immune system to step it up a notch to ensure you feel ok. Mental – this of course is your standard stress that comes from dealing with situations, people or events that cause us our average stresses in life.

 

What exactly does this mean? It means that my body is not sending the signal from the pituitary to the adrenal glands to “rev up” my adrenalin and cortisol production needed to protect my body and keep all my body systems going. Because of this deficiency, when my body asks for help as a result of any stress, it gets nothing and my body systems and functions simply – SHUT OFF. We had an example of this just this Monday morning when after dealing with a stressful situation on the phone, my blood pressure dropped to 128/48 in a matter of minutes causing some alarm at the Dr.s office. The thing that is concerning to us is that I “felt” fine, even when prompted by the Dr….I told them I only felt a bit tired. Obviously, this can happen very quickly. I could be ok one moment and in Adrenal shock the next, and then….dead.

 

I was a bit taken back by that and shocked to say the least. BUT….ever thinking and looking for the positive, I jumped right in and said, “OK….but we can give my body something to help it and prevent Adrenal Shock, right?” The answer is yes. The treatment for this is to supplement synthetic cortisol in your body. That statement brought about a long pause....for the Dr and me as well.

 

Bad news is - I can’t have cortisol supplementation as I have Cushings Disease. Supplementing cortisol into my body is giving it the “uber” food that it needs to build more tumors. 

 

So, we are in limbo right now. The more Doug and I find out about the endo system the more we are coming to realize that the medical profession is really just as confused as we are. My Dr. stated very honestly, “There are just so many variables.” The Dr.s at UNMC are diligently looking into alternatives and we are doing our research as well. We have a consult scheduled in a couple weeks. This gives them some time to look into some things. In the meantime, we are doing the same and asking that if you know anyone who might have some tid-bits or ideas to share….please don’t hesitate to let us know. We are trying to educate ourselves, making notes, writing ideas, questions, and are open to any suggestions, ideas, or thoughts.

 

I know it is a lot to wrap your head around. I’ve been struggling with it myself. I’ve been very focused on better health and the idea that things would get better and that this would all go away. I don’t fault the Dr.s for telling us that, but coming to the realization that this is not going away and that we are continuing on this journey….well, it is a bitter pill for me to swallow right now.

 

Please don’t take offence to the fact that I wrote just one email to include you all. I just can’t get myself together enough to be able to tell the story over and over again…I don’t think that I could do it and stay composed. AND, Doug and I both agreed that we are just so unsure about sharing this with people because we don’t want to add to the loads that everyone is already dealing with in their own lives…BUT…I didn’t want you left out either as your support and friendships have meant so much to me.

 

I don’t know really how to close this note as it was of somber content. So, thanks for being in my life and for caring.

 

Autumn

And then...a bump in the road.

As great as the year started off, I should have known!  It should have been obvious to me that with the high, would come the low.  And, boy did it. 

We came home from our honeymoon with heavy hearts as our dear dog Kozmo had passed away while we were gone. 

We had been such a companion to me through all of this.  He was always there, comforting and loving and I was heart-broken to be in the lonely, quiet house without him, and quite honesstly, I felt so guilty to have not been with him when he died. 

A Memorial for my sweet "MO"

click here:

http://www.critters.com/main.php?action=view&mem_id=1539&page_no=1

 

2007 - In the beginning - An Uphill Swing

2007 launched itself in a positive and fun kind of way. 

My tests, after months of hard work, were coming back showing balanced hormone levels and I was simply feeling better.  My endocrinologist gave us the green light to start trying to have a baby.

We saw a specialist that was hopeful and helpful.  She did all the appropriate testing, which I might add was NOT covered by insurance despite the fact that the Cushings had caused it all.  She detailed a plan for us that we were excited about. 

As a couple, we were planning a Wedding Cruise with all our friends and family for March of 2007.  It was a fun and positive time.  I felt like things, however slowly were getting back on track. 

In March, we headed to our wedding cruise with friends and family and had the fun, wedding that we had missed out on.  The cruise, the ceremony and the time together with friends and family that hadn't been part of our small Justice of the Peace ceremony was perfect, and the following week in Mexico on a belated honeymoon was blissful. 

The spring of 2007 was fun.  It seemed like we were on track.  The road we were on seemed perfect! 

Changing Doctors like Changing Seasons

 One would think that once you have survived the agony of finding a doctor and getting a diagnosis it would get easier. 

  

I honestly never believed that.  It was painfully evident that my original endocrinologist’s purpose was to help me get a diagnosis - NOTHING ELSE!  We was not interested in treating me.  He didn't want to help me with the issues that were rearing their ugly little heads.  He simply wanted to mark me as a notch in his medical practice headboard.  I was simply a number - a number that he wanted to add to his success column.  Sadly, for me, I was having some familiar symptoms and welcoming all sorts of new and just as ugly ones into my laundry list of issues. 

  

So...I have to move on.  It was painful.  I didn't want to start over.  I was sick to death of doctors, but I was not ready to relent and I was honestly still quite ill. 

  

I spent most of the summer of 2006 finding a new doctor, becoming acquainted with that new doctor and re-testing with her.  Then she passed me off to a resident and I spent another few months getting acquainted and working with her.  Despite all the changing, I felt good about the new team and I felt like they were listening to me.  

 

 During this time, I had a difficult conversation with my Doctor.  My fertility was of great concern to me.  My irregular periods were top of the list of symptoms that sent me in looking for help almost 3 years prior. 

  

I should stop here and tell you that in all the changes in my life, the one constant, the one thing that has never changes for me has been that I want to have children.  I want to be a mother.  I feel this with all of my being.  So, of course my fertility was weighing on my soul. 

 

 So, I made an appointment and I went in prepared to have a difficult conversation.  I needed to know if this dream of children was something that I needed to let go of.  Hanging on was hard, but hanging on with no possibility would be worse.  The conversation was frank and my doctor said that we had to work on balancing my body, but she was not ruling children out.  My heart was lighter than it had been in a very long time. 

  

So, we did a lot of testing and we worked to get my body balanced out.  I started new medications and worked very hard to maintain a healthy diet and good health.  That brought us to the end of the 2006 quickly. 

 

 This is an email that I wrote to a fellow Cushie in the beginning months of 2007:

 

 

I totally understand the "blah" feeling that you are experiencing post op, and I'm sorry that you have to go through it!

 

I am 20 months post op....pit adenoma...removed June of 05...and it has been a battle. I have really had a hard time getting my body and soul balanced out again. I had this pipe dream that things would just turn off and go back to normal as quickly as they went down hill...and that was just not the case.

  

I had to change doctors after surgery. Once the tumor was removed the Dr. that diagnosed me was blinded to helping me work at better health. I sought out a new Dr. and have been working with her for almost a year now and am still having trouble.

 

I don't know if this will help you or not, but this is the "road to better health" that she suggested.

  

She started by having a bone density scan to ensure that my bones weren't in bad shape as a result of the Cushings. She also did a bunch of blood work and a SUGARS test to see about my insulin, since Cushing's can bring on diabetes. I was not diabetic, but was, what she called, INSULIN RESISTANT. So, I began a regimen of medication....Metformin...It is hard to start taking.....so it takes a few months of weaning ON to get up to the correct dosage. Then she really dissected my thyroid and explained that any off-balance can cause problems. I started synthroid and increased it till be blood work started showing improvement. All this took a few months.

  

In the meantime, I have had 2 MRI's and done another 24hr cortisol test to put my mind and the Dr's at ease that all this still well. I will have an MRI every year with my pap-etc as part of my yearly from now on.

 

I also started a low impact exercise program and she also sent my to a nutritionist. These things were helpful, but not easy. As of the first of Jan I was released to full physical activity at the gym. I thought for sure the weight would fall right off with the balanced diet.  I WISH IT WAS THAT EASY! Turns out I started GAINING weight again! So frustrating! My metabolism was so dead. I would work out and then practically fall asleep standing up because it would just shut off. That isn't good for weight loss!

  

Also, one of the symptoms that I've had for years and one of the things that sent me to the Dr. to begin with was the lack of my period. I still hadn't had one and so we started addressing that problem. I saw a specialist who took a close look at my "girlie" parts and hormones. Turns out that I had some tumors and poyps that needed to be removed.  So...back to surgery I went.  (Honestly, that was some of the most painful testing I've had done.  They checked to see if my tubes were open - OMG!  That was awful)  But, that completed, I do feel different.

  

Tuesday I felt so good. I had energy and just felt better. I can't really explain it. I haven't had that feeling in a couple years. It didn't linger, but it happened and that is progress. It has been so long since I've felt "good" that I forgot what it felt like. I thought I was having an out-of-body experience or something.

 

ANYWAY...the point of all this was to share with you that it is an uphill battle and that you should NEVER give up pursuing better health! I don't know anything about growth hormone, so I can't help you there. I just know that I will continue in my quest for balancing my body and I will try to be patient until it gets on the right track.

  

I hope you figure out what you need to do next! 

My thoughts and prayers are with you!

 

 

~Autumn

 

Raising Awareness - A Continued Effort

In the midst of all that I was going through, and the testing and re-testing that I was living through as a result of changing doctors, I still felt a passion for Raising Awareness. 

I had seen the fruits of my efforts.  Shortly after the last T.V interview, I was contacted by 3 women in the Omaha area who had seen the interview, who were suffering themselves and just knew that Cushings was the cultpit.  So, I kept on raising awareness to the best of my ability:

This is a copy of an email that I sent to friends and family in 2006:

Dear friends and family,

Please take a moment to read and sign this petition to raise awareness for CUSHING'S DISEASE:

visit the following online campaign, by iPetitions:

http://www.ipetitions.com/petition/CushingsDiseaseAwareness

Your support and understanding have been a priceless blessing to us as we have battled and continue to deal with the effects of CUSHING'S DISEASE and the effects on our lives.

Thank you for your continued support!

Autumn

1 Year Anniversary of Surgery 6/10/2006

On June 10, 2006 I posted on the support boards: 

I'm sure we all agree, that although we can empathize, & relate, it is never easy to know that someone else is feeling "blue."  

I am discovering a very profound truth in my journey, that is a bit disturbing, yet I find calm in these sentiments as well.  As you all know, sometimes the words escape us, so bear with me while I try to explain.  My thoughts are something like this:

I have felt "punished" for so long....you know the line of thinking...."WHY ME?  WHAT DID I DO TO DESERVE THIS?  I JUST WANT TO BE THE "OLD" ME AGAIN!"  These same thoughts played over and over in my head, and have for the past few years.  Even just prior to surgery, I kept thinking..."YES!  FINALLY!  I WILL HAVE SURGERY, AND THEN I WILL BE THE SAME OL ME AGAIN!  YEAH!  That thought was a huge comfort going into the hospital.  I clung to that like it was oxygen itself.  Sadly, as my recovery progressed in a fashion that I didn't like, I clung to those thoughts and continued the judge myself and my recovery.  This of course had brought on some very "LOW" lows over the past 12 months.  I would look in the mirror and still not see what I wanted.  I would exhaust myself at physical therapy, yoga, the gym and still see little change and feel so defeated.  I would curse my brain for its slow reaction and inability to articulate ideas and thoughts.  I would step onto a scale and chastise myself for doing too little.  I would hurt and cry and then beat myself up for being weak. 

All these things seemed to stem from the simple track in my mind that kept playing...."I JUST WANT TO GET BACK TO THE OLD ME."

Oddly, just recently, a very simple thought occurred to me.  "This IS me!  This IS who I am."  It was a very sobering thought, yet I felt a great sense of calm in the admission of it. 

In reflecting, it occurred to me that even if I hadn't gotten sick, I would have changed from that "old me" that I had branded into my brain as the "ultimate."  Somewhere along the way, I deluded myself into a stagnant self-image.  I let this disease FREEZE and immortalize a self-image of youth, vigor, health, beauty, wit and stamina that would not have stood the simple test of time, let alone a life altering disease.  I was in fact my worst critic.  I was and am the hardest on myself.  And I am fighting the delusion that I have to be something that I am not anymore. 

THIS IS ME!  I am on this path.  I can't go back to 23 and perfect, body, health and mind.....NO ONE CAN.  The hard part for me...for us, is that this disease takes these things so quickly that we loose the time to adjust and in many cases, the emotional and physical strength to balance and know that despite what physical changes are caused....we are the same beautiful people that we were before.  This disease, like many diseases can take so much from us so quickly.  And as our heads are spinning in the fury of disbelief, we loose the ability to realize that despite the waning of our physical bodies....our spirit remains in fact...sometimes it retreats to a quiet place inside, but "WE" are still the same persons.   

I am learning to recognize myself as I am.  I am learning to not judge myself so harshly.  I am leaning not to scorn myself for my inabilities.  I am learning to love myself again.  It isn't an easy road.  I am having to reacquaint myself with many aspects of my personality and who I am...I am not the same is some respects, but that is expected as time moves on....and I can't see wasting one moment of the gift that this moment is in looking backward with hind-sight that is 20/20...again, deluded by an inaccurate immortalization of a past time that is no longer. 

I have a future to think of and be hopeful!  But most importantly, I have this very moment!  This second is a precious gift!  I can't with a clear conscience waste the time I have right now! 

I hope that you all remember that you are beautiful people.  You all give of yourselves and listen and help and share.  That is a huge blessing in my life that I am very grateful for.   

As a favor to me, because I know that you would all do something for anyone of us that asked...Do me a favor and look in the mirror and see yourself.  Don't look at your puffy cheeks, or your red-toned skin....Look at who you ARE.  SEE YOURSELF CLEARLY and know that you are all that you need to be!   

I cherish you all.  There is never a day that I don't think of my family here and wish you all health and happiness!  Please remember that you all deserve that and so much more!  Remember that you are wonderful beautiful people!   

I am sending you all love and light and good thoughts!  

Much love to everyone!

Autumn

Not Like I Thought

I've learned, and continue to learn, that things don't always turn out like you think or plan. This is a hard lesson for me. I've always been a planner. I had always had a clear idea of who I was and where I was going. Cushings didn't share the same vision. That was and is still a bitter pill for me.

 

I had my first MRI about 6 weeks after the surgery and it had come back ok, other than the "possible scar tissue" noted by the radiologist that was showing just to the right of where my tumor had been.

I had been working hard in my aqua therapy and going to gentle yoga. I was eating carefully and trying to stay focused.

 

Needless to say, as the first New Year came into the picture after my surgery, I found myself over six months post op and NOT in the place that I thought I would be. I was finishing up my aqua therapy and close to wrapping up the weaning process. But, I did not feel good. I was still having some really bad days. Actually, I was still having more bad days than good. Some days i simply couldn't get out of bed.

 

My relationship with my endocrinologist was not working out. He was set that I was cured and he dismissed all the issues that I came to him with just as every doctor before him had done. Of course that didn't settle well with me. My vision was still bad and I couldn't drive. I was sad, still fat and feeling bad. It was a toxic combination, but I tried really hard to be positive.

 

I did have some things going for me. I was able to use my long-term disability insurance and so the fact that I was not cleared to go back to work was not as bad as it could have been.

 

Despite all this, my medical team was certain that progressing as I they anticipated. The problem was that my progress was not what "I" anticipated.

 

I worked hard at keeping myself busy and involving myself in things that mattered to me. I took up a lost passion - painting. I discovered that the emotion and trauma that had become my life was good for my creativity, and better yet, it was a good release.

 

My true friends became evident. I talk about this a lot, but I was amazed how many people simply can't deal with sickness. Some people disappeared from my life completely. Some people, people I considered to be close friends, said awful things, like: "Your illness is simply mind over matter. You are choosing to make yourself sick my believing you are sick. If you want to be well, visualize it and you will be." And then there were angels, like my now dear friend Alison who just showed up and became a friend. She didn't accept excuses, she didn't judge, she was just there - SOLID! For these people, I am grateful! Their friendship carried me more times that I could ever repay.

 

I became attached to the members of the support group I frequented. I was in a weird, negative, frustrated place. But, despite my own emotional turmoil, I spent the spring of 2006 focusing on raising awareness for Cushings. Once again I reached out to friends and family and the media as we approached April 2006. We were hoping to get April 8th recognized as National Cushings Awareness Day for the first time. We succeeded!

 

Here is the note I wrote to the local news station in Omaha and the subsequent interview they did in honor of Cushings Awareness Day, April 8th, 2006:

4-5-2006  Hello KMTV!  My name is Autumn Stinton.  I am a CUSHING'S DISEASE Survivor.  This rare disease affects only 10-15 in  every 1 million Americans.  I just found out from Senator Nelson's office that last night, April 4th, 2006, the U.S. senate unanimously passed resolution 423 to make April 8th, National Cushing's Awareness Day.  We are VERY excited about this as we have been working for quite some time to get this passed.  I would love to share my story with you in hopes that we can raise awareness in our community and help others who may be suffering.  Please feel free to contact me.

 

Eye, Eye, Eye, Aiy...I can not seeeee!

 My Eyesight

Just after I ended up the ER, (prior to my diagnosis), as my body gave out, I found myself at home, too sick to do anything but sleep.  My body was failing me. 

To my horror, I woke one morning to blurred eyesight.  I blinked…and nothing.  I rubbed my eyes…and nothing!  I shook my head…and NOTHING!  Needless to say, I totally freaked out!  I panicked.  I tripped out of the bed and frantically went to the phone where I discovered that I couldn't see the buttons.  I kept thinking I was having a nightmare.  Somehow I managed to call Doug at work and he called the Doctor.  From that point on, we spent many afternoons in the offices of eye doctors doing light and vision tests.  I could see light, but everything else was blurry.  The best way to describe it was like looking through panes of glass with water running down them. 

The worst part was that everyone said they "thought" that my loss of clear vision was a result of the pressure the tumor was putting on my optic nerve.  They all assumed that my vision would return as soon as the pressure was relieved, but no one knew for sure. 

 I was worried.  I had always had 20/20 vision.  I was terrified that I would not be able to see again.  And, with the loss of my eyesight went my ability to drive, and that meant that I was at someone else’s mercy.  This was anything but comforting to me - Miss Independent.

Therefore, you can imagine how thrilled I was to wake after surgery and have some vision back immediately.  But, after that momentous change, not much else happened for a while. 

 Then a couple months after my surgery, I sneezed for the first time.  As anyone who has had this surgery will tell you, sneezing is a big deal.  You are told to avoid sneezing when you leave the hospital.  So the first time it happens, it shocks you and honestly, it feels pretty weird.  But anyway, I sneezed.  After a moment to collect myself and think about whether or not I was ok, I realized, to my amazement, that my vision in my left eye was back in it's entirety.  I was thrilled!  My excitement was not dulled by the fact that having vision in one eye created very odd depth perception issues for me.  I was forever bumping into things and misjudging how close I was to things.  I was always bruised. 

 Then, later in the year, while cleaning my house in a spurt of energy, I misjudged the distance between my forehead and the door-jam I was dusting and whacked myself pretty hard.  I sat down to collect my wits and clear the stars.  Tears streamed down my face.  As I stood up, I realized that a little corner of vision in left eye had cleared!  I walked around looking out of the corner of my eye for a few minutes to make sure that I was in fact seeing a little clearer. 

This was the last change in my vision.  As a matter of fact, in more recent months, I finally admitted that my vision isn't as good as it should be and I went to see a new eye doctor that confirmed I needed glasses. 

 Today, after years of being chauffeured around, I am driving again.  I have to be very careful and pay attention to my depth perception issues.  I had to pretty much re-learn how to see things without relying on 100% of both eyes.  But, all things considered, I am grateful for the independence I have regained. 

Raising Awareness - Awareness Saves Lives

In the weeks and months just after my surgery, as I learned more and got answers to things that I should have had prior to my surgery, I began to understand the importance of AWARENESS. 
 
It was painfully obvious to me that there needed to be more information out there.  It was heart-wrenching for me to think of someone else going through what I was going through - alone.  I was fortunate to have my husband and my mom and a handful of people that were empathetic.  But, it was clear that many people didn't have that.  So many struggled for answers and were alone in their quest for answers.  They didn't have a support team and then when they got to a doctor, the very professionals that were supposed to help them, they were ridiculed, taunted, misunderstood, and usually ignored.  It wasn't right, but it was the norm. 

I didn't understand what I had done to deserve the twist in fate that I was living, but what was become clear to me was that I could make a difference.  I could raise awareness.  So in the fall of 2005, I set out to raise awareness. 

Being at home, I became familiar with many afternoon talk shows.  It occurred to me that there was a wasted platform there.  I became fond of the Ellen show.  I appreciated the positive feel that it had and I was in desperate need of that in my own life at that time.  So, I wrote to every talk show that I could...multiple times.  I contacted the radio and news stations.  I sent emails to friends and family and contacted my State Senators for support in adopting a National Cushings Awareness day.

There was a large movement that fall by many of us who frequented the boards on Mary O's site (www.cushings-help.com) to contact our Senators and encourage others to do so that April 8, 2006 would be adopted as the first National Cushings Awareness Day.  The 8th of April was chosen as it is the birthday of Dr. Cushing.  - Rather apropos, don't you think?  :) 
So, I continued to reach out.  I continued to raise awareness to the best of my abilities.  I felt like it was the right thing to do.  To my surprise, one of the local news stations I contacted reached out and did a story about Cushings.   Here is the news spot that aired in November of 2005:

 

 

This is a copy of the email that I sent to the media:

November, 2005

Dear local Omaha News Team,  

 I feel compelled to write you to ask for your assistance in helping raise awareness for CUSHINGS DISEASE.  We, (me and many of the members of the organization that I am a member of - cushings-help.com),  are currently petitioning and working with our Senators throughout the U.S to adopt a Cushing's Awareness Day.  As I was personally diagnosed with Cushing's Disease this past May 2005, this endeavor means so much to me and my family. 

 I will give you the cliff notes of my experience, but would be happy to provide you a copy of the letter and information, including photos,  that I personally have sent to Senator Ben Nelson and Senator Chuck Hagel.  I am also contacting Contacting Congressman Lee Terry to ask for his support.  Many such letters will be received by Senators throughout the United States from other "CUSHIES" as we continue to attempt to raise awareness.   

About a year ago I began to get sick. I saw my doctor repeatedly over a six-month period describing a "laundry list" of symptoms that as far as anyone could tell had no relation, and unfortunately became worse and worse each day. At the onset of the worst of my symptoms, I had just turned thirty, but within six months, (April 2005), I was so sick that I was acting like an eighty year old. I could hardly move. It all climaxed when I ended up in the E.R one afternoon at work thinking I was having a heart attack. Thankfully, it wasn’t my heart, and a whole new set of testing began. Within three weeks, I was diagnosed with CUSHING’S  DISEASE.  Shortly thereafter, my health rapidly declined. I woke up one morning and couldn’t see. It was like looking through a waterfall. Within the week, my physical condition declined to the point that I was unable to walk from the bed to the kitchen without having to lay down and rest. I could no longer lift my arms or shower or do the simplest of everyday tasks. Due to my quickly declining health, surgery was scheduled quickly. On June 10^th, 2005, I had surgery to remove a tumor from my pituitary gland.  The recovery has been slow, and difficult, but we are hopeful. We are learning to be flexible in our lives. Before I got sick, Doug and I had planned a small destination wedding this fall with close friends and family in Mexico. Our plans obviously needed to change. Our focus changed greatly as my health declined. I have been so blessed to have the support and love of family and friends. I’ve also been so fortunate to have doctors that were familiar with CUSHING’S disease. It is so rare, and therefore, many people go undiagnosed and suffer for years. Untreated, the disease eats away at every part of your body. It is a painful disease that attacks more than just your body. It dissolves your self-esteem. Coping can be all but impossible. Add to that the frustration of it being foreign to many in the medical profession, and you will find a small group of people that suffer quietly.  That is why I am writing you. As with any disease, AWARENESS is the key. This disease affects approximately ten to fifteen in every million Americans. Few people have ever heard of CUSHING’S disease, and fewer know much about it, but it affects so many lives. Those who have CUSHING’S disease and those who love us "CUSHIES," (as we are affectionately called), need to know there are people out there that can help. Personally, I was at my wits end with my doctors in the beginning before anyone knew what was wrong. I would see a doctor each time a new symptom would arise and would leave the office feeling belittled and stupid, and yet, still as sick as before. I was lucky though. Many people have endured years of tests and illness, yet, still have been unable to receive a diagnosis. Even more heart wrenching are the stories of young children, their lives quickly devastated by this disease. Sadly, their parents and our loved ones who support us suffer as well. It isn’t easy to watch someone you love suffer. I joined a support group that is hosted on line by a fellow "CUSHIE," Mary O’Connor. This website provides information, and chat boards that have become a lifeline to me, and others like me. You can check it out for yourself at www.cushing-help.com. There you can read more about the disease and even check out my and other’s bios.

Despite the difficulties that I am having in my recovery, I am constantly reminded that this life is so much bigger than me. It occurred to me that there have been so many events in the past couple years that have caused pain and suffering, so many images that will be with us forever. Whether they be acts of god, events caused by hate, or personal battles that we fight, none is more tragic than the other. The result is loss, pain, suffering and hurt.  My thoughts and prayers go out daily to those "effected" by any such events. In contemplating this, it occurred to me that each of us, not just Americans, but each HUMAN on this earth should feel "affected" by the events that happen around us. That is what makes us human, and HELPING is what makes us KIND.  No matter what the event or cause, it seems to me that education and sharing information is vital to help prevent the recurrence, or at least help ease a disastrous outcome. By each of us sharing our lives, our thoughts and watching out for each other we stay informed and reminded that we are loved.  

As a news team, you have a powerful position. What you do and say makes an impact on so many. It is because of this that I humbly ask if you would be willing to take a moment and help make people aware of CUSHING’S disease on a news broadcast.  It is my hope that you will maybe reach one person that is suffering without knowing why and motivate them to reach out. Or maybe you will touch the life of a "CUSHIE" that is "down-in-the-dumps," giving them a smile to know that there are people who care. Or maybe it will motivate someone in the medical profession to step up and promote education amongst his or her peers. Or maybe it will comfort someone like the love of my life, Doug, who selflessly continues to support me and make my health the center of his world. Or maybe it will give someone else who is suffering the push they need to stand up and ask for help.  

As a survivor, I would be happy to answer any questions that you may have about this disease I hopes that it will assist in spreading the word and raising AWARENESS!  Please feel free to contact me via this email address or via the telephone contact information listed below.   

 Thank you for your time.

Weaning and Whining - they go hand-in-hand!

WEANING - Oh, God, the weaning!
 
In September of 2005 my weaning began. My endo was without empathy and that didn't help. But that aside, weaning is a challenge. It seems ironic that the very thing that makes us sick in large doses in the first place - CORTISOL - is the very thing that causes such pain and agony when the dose is dropped.
 
Plain and simple, weaning sucks! Just about the time your body adjusts to the lower level, just about the time you stop vomiting and shaking, just about the time your body (even your hair) stops hurting, just about the time you feel like you might live again - the doctor drops the does again and it starts all over!

My doctor told me that what I was going through was similar to what a drug addict goes through every time he dropped my dose. It was hell. I spent many nights shaking, fevered, vomiting. Followed by days of intense pain and lots of emotional lows.
 
I also got the endo's ok to start some aqua therapy around that same time. I was excited to start the therapy. I remember the day my husband and I visited the aqua therapy pool and met the therapist. Despite my excitement to get going, I was overwhelmed by the work that lay ahead of me. While getting the tour of the facility, I had to excuse myself. My husband found me sitting in the hallway sobbing. I was overwhelmed, scared and emotionally spent. My hormones were out of whack, my body hadn't recovered like I thought it would, and all I could see was the negative. I remember him sitting with me and assuring me that I could do it and that it would be a good thing. And it was. I would recommend aqua therapy to anyone recovering and rehabilitation after Cushings. But, that didn't mean it was any easier at the time. It was hard. It was one of the hardest things I had ever done.

Keeping my spirits up and remaining positive took work. 

To illustrate my frame of mind at the time and the efforts that I made to be positive, here is an email that I wrote and sent to friends on September 12, 2005: 

Hi friends!

I am having a really rough time right now. I feel awful! (Medication withdrawls) I was talking with my Cushing's support group this morning about recent tragedies. There are so many events that have caused pain and suffering in the past couple years. So many images that will be with each of us forever. Whether they be acts of god, or events caused by hate, none is more tragic than the other. The result is LOSS, PAIN, SUFFERING and HURT.

As my thoughts and prayers went to those "effected" by the events of 9/11, it occurred to me that each of us...not just Americans, but each HUMAN on this earth should feel "affected" by the events that happen around us. That is what makes us human. And HELPING is what makes us KIND.

No matter what the event, it seems that education and sharing of information is vital to help prevent the recurrence, or help ease the disastrous outcome of any such event. By each of us sharing our lives, our thoughts and watching out for each - we stay informed and reminded that we are loved.

So, that being said, I realized that I needed to stop dwelling on the negative in my own life. Most importantly, I needed to be sure to tell those I love and cherish how much they mean to me. That brings me joy and happiness!
 

A simple "Hi", or "I'm thinking of you" means so much. In learning from my step-sister-in-laws example - (she, who has sent weekly cards of encouragement and well wishes since I became sick that I CHERISH) - I am sending my love to all of you. I want you to know that each of you are so important to me.
 

My hope is that you will take a moment to reach out - a call - a note - an email - Tell someone that could use a "pick-me up," or just someone that you care about that you love them. It is so easy to bring love and light into someones life, but somehow we always just assume they know. Don't make that assumption. Don't regret not saying the simple things that really make a difference. 

 

Sending my thoughts and prayers to "ALL" of us that continue on - fighting - whether it be a worldwide event, a natural disaster, or a personal battle with whatever ails our bodies and souls.
 

Share your love - Send a smile! It is so easy!
 

Much love,

~Autumn 

Life (although not what you may have thought) Goes On...

In the month of August, 2005, 8 weeks after my surgery I was doing pretty good. I hadn't really started the weening process, I hadn't jumped into physical therapy yet, and my whole focus was on rest and recovery. In the heart of a hot, humid, mid-west summer, I spent a lot of time in the cool A/C of my house, but I was feeling better, and that was my goal.

At the time, Doug and I had been dating for 6 years. We had been planning a wedding for the summer that I had my surgery, so as one can only imagine, that took a back seat to what was going on with my health. A wedding and a marriage were not even close to being on my radar. As a matter of fact, I had this lingering fear that Doug would just get fed up with me and all my issues and just simple walk away...and who could blame him? I didn't want to be going through this, so why would he? (That was a demon that I would re-visit over and over again in months to come.)

 But, as I've learned, life had a way for shaking you up and keeping you guessing. On Tuesday, August 16th, Doug came home from work and asked me to marry him...THAT FRIDAY! And so we wed on Friday, August 19th, 2005 at the justice of the peace in Omaha surrounded by a few family members in person and a bunch of others joining us on speaker phone via conference call.
 
A girl dreams about her wedding...or at least I did. I wanted the pretty dress, the cake, the dancing...all surrounded by my friends and family. That isn't what I got. As a matter of fact, I had to swallow my pride and simply turn off and push down the sadness I felt about getting married looking like I did. I would have no pretty dress. I would not have what I thought would be the perfect wedding. At first I was sad, but after a little reflection, I realized that it wasn't those things that made a marriage, it was about us loving each other and wanting to make promises to each other and I wanted nothing more.  So, I embraced it for what it was, and I said yes! We were married 3 days after Doug asked me and despite my request for no pictures, there are some pictures and I cherish the memories that I have. So much of it is a blur, so I am grateful for the pictures that help me remember.

 
 Here is an email that I sent August 23, 2005 to a fellow cushie shortly after we got married:

Sorry for the delay in getting back to you! But I have a great excuse...

...Tuesday last week, Doug asked me to marry him. I of course, after 6 years, said yes, and we had a small ceremony Friday. It was a WHIRL-WIND of action and I'm so beat today. I feel like I've been hit by a truck! I haven't been taking any pain killers for the past 4 weeks or so to give my liver a break, but I did this weekend just so that I could keep up - as best I could anyway. I'm still pretty slow.

Anyway...to answer your questions...I put on about 60# in the 6 months before my surgery. That was in addition to the 25-30# that I had gradually gained over the past 2 years. SO...I can confirm that I am a "HEFALUMP!" I really expected the weight to just fall off after surgery....Honestly, I really did! Sadly, that was not the case. I wish I had some advice for you, but I'm still pudgy. I'm going back to the endo this Friday for a check-up. I'm hoping that he will clear me for aqua therapy. My G.P wrote me a refferal, so all I need is the ok to get started. I'm hoping too, as it cools off a bit, to be able to start walking. My neighbor gave me her stationary bike too, so all together, I hope something starts to make a difference.

As for my eyesight....My vision is like I'm looking thru window panes with water running down them. My left eye has not improved at all. I can see clearly out of a bit of the corner of my right eye, and the more I use it, I think it is strengthening the muscle....because it seems to me that it might be getting a bit better. I do get headaches after any bit of time that I focus, but I just am so bored. It's been 4 months since I've read a book, magazine or driven my car, so I'm pretty starved for mental stimulation. I'm luckt that Doug increased the pixels on the computer, and font can be enlarged so I can see well enough to use the computer a bit every day. So...the they;ve told me that there doesn't seem to be any nerve damage in my eyes and that it could be all the water that I am retaining that is bloating and stressing my eyes out. Hopefully, as the water retention lessens and I get less "poofy", my eyes will feel the relief as well and my clear vision will come back.

They really don't seem to know what to tell me. There are so many questions that they can't seem to answer. I'm really thankful for this board. To share with others and get ideas, answers and just to hear that others have simular problems, etc....to know I'm not a freak! :)

Anyway...I hope you are doing well and recovering. Are you working yet? I go back for my first MRI after surgery the first week in September. I'm anxious. How are you feeling in general? Are you taking any pain killers? I am at 15 MG of hydrocort a day right now...I'm thinking that they might drop it again this coming week. I'll keep you posted. :)