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