Finally accepting....

It's been 6 long yrs of anger, denial, self pity, HORRIBLE CHOICES, etc...but God woke me up. I feel free. I am being baptized tomorrow. God is always so good.

The Cross

I took this photo of a cross that stands atop a hill at Boone's Chapel baptist church, where I attend when able. I came across this in one of my daily faith books. I felt led to share. Enjoy.........

I came across this in the book entitled, "This too shall Pass....Keeping the Faith in tough times."

"No Pain, no palm, no thorns, no throne, no gall, no glory, no cross, no crown..."

 quote by: William Penn, "No Cross, No crown" 

What is required to move through the suffering we endur sometimes? The WILL to do so and the inner strength to carry it out. My problem is carrying it out. I have so many good intentions that I feel as I can't carry them out due to the fatigue of Adrenal Insuffienciency. We must have hope and faith not in our ability but in God's timing. Which is another problem of mine, impatience. I hope all are well who reads this from time to time. Love you all,

Tracy

My first grade Teacher.......

I'm now 40 yrs old and have had Addison's for 5 years now I believe. A good friend of mine called and said, "you'll never believe who has what you have"........I asked WHO?????????? Because if you know anything about this disease, it's rare. You don't have it like diabetes etc ever other home down the road...she finally told me, our first grade teacher who's name I shall leave anonymous because I didn't ask her permission. OOps....I'm in trouble again. She still lives in our hometown, as do I and still lives 5 min or less away. How rare is that? We've reconnected after 35 years of not seeing or talking to her but I would always glance at her home as I drove by almost daily and wonder how she was. She was my favorite, sweetest, prettiest, coolest teacher and still looks the same today. I've been able to share experiences and actually help her along some and she shares with me. I love her dearly and maybe the reason behind this all was for our "illness" we now share.........

My Diagnosis

I was very lucky. My skin, my weight loss, anxiety,  just getting over Mono at the age of 34 and a pretty smart Family Practice Dr. diagnosed me before my results came back. Sad thing is I was working for a family practice dr and hate to complain but told him for 6 months something was wrong. I lost 30 lbs, my skin was darkening, I was so Short of Breath just rolling over in bed took it all from me. My doctor needed me to work so he dismissed it as depression/anxiety.. told me to go see a pysch. This photo was taken two days before I was diagnosed. I can't remember levels but I remember an ACTH of 2500. I was sick. 

What started out as a photography blog......

Has become a Journal i.pray one day my girls will read and maybe understand somethings there Mama went thru, its also about being diagnosed w a chronic illlness that affects your.daily life and hopefully thru my experiences and the experiences of my fellow AddisonIans maybe we can help just one.person. Let me make.myself clear....i am.far from expert. I still.rely on my friends for.answers.and comfort. I still battle.this daily. But with Christ beside.you if you'll allow him and be obedient to.his word, all things will work out to the glory of God.

http://findinglana.blogspot.com/

My favorite Addison's writer. She has been through so much and if you're here whether you have it or are caring for someone who does, please read her blog, you can't put it down. I love Lana, you've helped me so much.

Before Diagnosis

One of the major signs of Adrenal Insufficiency/Addison's Disease is "tan skin". It hyperpigments your skin. My friend, Ashley Moyer and I, went to the beach for a day or two when we first got our cameras to practice and just have fun. I remember trying to walk on the beach was like running up hill as fast as I could. I couldn't breath. I was black in the pictures. I remember poor Ashley trying to adjust her camera settings. She said, "I can't even see you you're so tan". I hadn't been to the beach or tanning bed in over a yr. I guess in my brain I thought I'd been so much it just stuck LOL!

If I'd only known. All photos are by Ashley Moyer.

Go away Addison.

It's been so long since I've posted anything much on here. Maybe by blogging some of my thoughts, it will help in my healing process. Some of you know, some don't, I was diagnosed with Addison's Disease 3 yrs ago. It's a rare endocrine disorder that has destroyed my soul. Only because I've let it. As my friend Lana, puts it, http://findinglana.blogspot.com, "What is Addison's Disease in a layman's description?

Adrenaline is the hormone that can also be understood as fuel. It is created by our Adrenal Glands. Instead of us having to go buy fuel for our bodies, we have this amazing petrol/adrenaline station built right in our body so we can replenish ourselves as needed. If we would like to be environmentally correct, for those of us with Addison's, our solar panels are cracked and are no longer capable of storing up the energy our body requires for survival. Our power is dimming, so we will need synthetic energy through medications. The power factory is inside the adrenal glands and they send out miraculous adrenaline in appropriate releases. It's a wondrous system. It's a life-sustaining event that most people remain clueless about their entire lives. A silent, but indescribable system goes to work every day in your body, without a plug, without a reminder and without notice.

In the morning, your natural adrenaline levels are at their highest level. God is ultra-cool. He thought of all these scenarios with stress that we might encounter and he created us to be able to handle such things ourselves. Well, that takes properly working adrenals. Yes, our bodies are precise little boogers. High levels of adrenaline are normal early in the morning and this makes great sense. The levels are high because you are going to need a lot of fuel to wake up, get going and start your day. It's a dose being released into your body that says, "WAKE THE HECK UP!!! LET'S GET GOING!"

Some people may not feel as if their adrenaline levels are adequate...we've all felt drained at times, whether we have Addison's Disease or not. But, the Adrenals do their part to get your butt into gear. Someone might be rebellious; they push the alarm clock snooze button a few times and feel like a log that can't be moved. An important note is that we all have to confront the fact that our actions affect our bodies in a major way. If we stay up past midnight and need to wake up at 6:00am sharp, there's going to be a problem and your naturally released adrenaline is not going to be sufficient. Staying up late, watching movies, Facebooking or working overtime ---- whatever ---- if it affects your internal-clock and it will have an eventual consequence. Such is life.

If things are going on schedule and the person's adrenals work appropriately, many people hit the ground running in the morning and they go, go, go, until, evening approaches. Strangely, as the day wears onward, our wondrous bodies do something that is really cool...it automatically tapers the production of adrenaline to the bare basics so that our body can slow down and relax. Adrenaline levels are drastically reduced so the body will be able to eventually go to sleep for a good night's rest. So, adrenaline level measurements are starkly different from morning to night, and, if you are "normal," you NEVER have to think about any of this because your body takes over to handle it all. We have various auto-pilots throughout our incredible body; our adrenals are a big part of that system and it's easy to take it forgranted. Until, one day, those adrenals malfunction. The results are often devastating. For some, it means death. For me and for my Addisonian brothers and sisters, this means we have been forced to sit in the pilot seat and remain constantly vigilant so we don't crash..

If you have Addison's Disease, you must learn to "pilot" your body. It's a disease that has many storms to maneuver through and mountains to avoid...you can't have an endocrinologist at your side at all times, so you must be capable of listening for "engine" trouble, you must be in tune with the signals that deserve your attention for self-treatment. After you get your prescription with some extra pills in the bottle for those necessary "stress" doses during battling a cold, stomach virus, getting a kitchen burn, etc. you'll soon learn that self-dosing adjustments is key with Addison's Disease. Don't expect to get a bottle of pills and to "take two" per day and that's that. Noooooo. Far from it. Unfortunately, everyone has stress, physiological and emotional stress that appear, often without warning, on a rather regular basis.

However, before Addison's Disease, you just didn't have to think about anything but the added stress topic itself. Now, you must first think of YOU so that you can continue living and be healthy through stressful event - since your auto-pilot is broken, your medication can help in this battle. But, you must use your medication properly. Under-dosing can be a critical mistake. Your body, in times of stress, must get the proper dose to ward off an Addisonian Crisis. As I've said before, this is a trip that you don't want to make. Avoid it. Don't let denial be your downfall. Increase your meds as appropriate for your situation. You must make adjustments to meet your constantly changing needs - from pills to injections. As needed. If you favor sitting, standing and walking - even breathing - the Addisonian will seriously think about adrenal gland issues. They have learned that they must get their adrenaline from a synthetic form. Mainly, this will be some form of steroids.

Those of us with Addison's develop a regimented prescription plan for replacement hormone therapy in part by steroids, prednisone, hydrocortisone, etc. and for us...we are not getting anything extra out of steroids...we simply take the dose that the body normally would have provided. An Addison's patient needs their steroid supplements so their body can FUNCTION; those steroids, for the Addison's patient, is not sufficient for us to be home-run perfect. Our body is lacking this hormone. We aren't adding more to a current storehouse; our storehouse is empty so we are putting in replacement dosages. In fact, for many with Addison's Disease, we just want to take our meds, then be able to walk into the stadium and make it to our seat. A few of us will still be hitting some home-runs."

Finding her blog was a Godsend. Daily struggles, denial that you're not ever who you used to be, no energy, and I know everyone struggles with lack of energy but this is unexplainable. You'd have to be me for a day to begin to grasp the exhaustion. Realizing you'll never be who you used to be physically and sometimes mentally, is devastating. I've was diagnosed close to 3 yrs ago. I have yet learned to accept this. I refuse to but I know I have to. I want my energy back, I want to play ball again, I want to be so very active in my children's lives like I used to, I want to coach their teams again, I want so much. BUT, I'm trying to be patient, Be still and listen. God is teaching me patience. I don't want to learn it but I am. My friend Lana, says she was in denial 8 years before she learned to become content in her new body God had given her. And I think about it and I am being selfish. There are so many people out there diagnosed with chronic illnesses that aren't as lucky as I am. At least I can take meds, take them for rest of my life to live each day but I get to live. Some don't. Some are devastated by diagnosis of cancer, and other things and aren't lucky enough to get to live. Once again, quoting a wonderful writer, Lana, "There is a mourning involved with knowing the old you is gone. Yes, a huge part of yourself --- your core identity --- it's still there, but the core identity no longer has the same body as its partner. It's as if you are divorced from part of your self or a part of you has died. So, you go through all of the same emotions of mourning a unbelievable loss and it's just so darn hard to believe that things will never the same again. " I am getting help now in dealing with all this. I WILL learn to be happy and live again, not only for me, but for my darling girls, family and friends. I will learn to be content and happy in this body life threw at me. I love photography. But I haven't loved much of anything lately. I feel maybe if I blog and post pictures, it can be therapy for me and help people understand how I feel. In no way am I trying to draw attention to myself or have anyone feel sorry for me. This is for ME, my therapy............and secondly for my daughters, Carlee, Allie and Raegan who have watched their mom deteriorate over the past few years into someone they don't know anymore. I love you baby girls, Mama is going to get better. I hope by blogging and explaining how I feel day to day will help you all understand better how I feel and understand this disease a little better. I love you all so much!

Missing her

It's still so hard to believe she's gone. I found this picture as Allie and I were cleaning up her room. It's Aunt Sharon holding Allie. I remember the night when she offered to "babysit" HA!
As many of you know, Sharon never had children and it WAS by choice. She was so full of energy and such a freebird she never wanted them but loved us and mine. Well Mama and I were going to the Christmas parade with Carlee, she was 2. So Auntie said" I'll babysit!" After we warned her that Allie was the worst baby in the world, she said, "I can handle it". Fifteen minutes after we left, she was at my Grandmothers with Allie. LOL

I finally made EXPLORE on Flickr!!!!!!!!!!! WOO HOO!

I know you're like What the heck is she talking about? Well it's a pretty cool honor among photographers on the www.flickr.com where the best of the best go to post photos. This may better explain it. (Yes, I copied and pasted from another website this brief article):

"For many photographers, a place on Flickr’s Explore page is the ultimate prize. It’s an acknowledgment that their work can stand among the best on the site, that it is indeed “interesting,” and that they are an important part of the community.

And of course, it can bring a massive surge of views to their image and their photostream.

So what does it take to improve the chances that a photo will be highlighted as one of the most interesting uploaded in the last seven days?

To Be “Interesting,” a Photo Must Generate Interest
The simple answer is that other people have to like it. Flickr itself has no way of assessing a photo; it can only react to the interest the Flickr community has already shown in it. As Serguei Mourachov, a Flickr staff member and part of the team responsible for creating the Explore page algorithm, told us:

“We are looking for what’s attracting [the] attention of our community and not just for nicely arranged pixels.”

That means that to reach the Explore page, a photo has to have gathered views, comments and been faved. Each of these actions has a different weight in the algorithm and the weighting is adjusted regularly."

The picture that made it was one I did at Cheryl Cook's home when I was doing some Christmas pictures of her children. It was funny, they wouldn't sit still in the rocking chairs and I didn't get but one or two good ones of them in those things but I happen to look back, the sun hit just right, and my "eye" saw the picture. I snapped it and WOO HOO! I finally made explore. And a special thanks to Kim Patrick, my co-worker and friend, and her mother, Sharon, for loaning me the chairs! OK, I'm done being over excited. Thanks now!

Allie's first Cheerleading Competition

Allie had her first cheerleading competition today. Pretty much the whole squad's first competition. They did really good.

Final Update

Aunt Sharon went to be with the Lord on Oct 4th at 10:50pm Pacific Time.

10/3/09 3:00pm

I just got a phone call from mama. She said that they're pretty sure it's happening. They've started the Morphine pump to help with her breathing and many other things. Mama thought they lost her once today so I don't know if she'll be with us this time tomorrow. God is a loving God and he gives us nothing we can't bear. My mother seemed ok when she called and I had to go over and tell my poor Grandmother. She is at peace too. She has been praying all day today that Sharon will go on in peace and not suffer. So Grandaddy, get ready cause she's coming! If you've ever read "90 Minutes in Heaven" it says that your loved ones that you know are waiting for you.............I pray that's true because when I die, I'd like nothing more than for my Granddaddy Jack to be there waiting so I can go jump in his arms. As the country song written so brilliantly by Brad Paisley says, "When I get where I'm going, there will be only happy tears, don't cry for me down here." I'm gonna walk with my grandaddy, and he'll match me step for step, and I'll tell him how I missed him every minute since he left, then I'll hug his neck." It's hard not to cry "down here" but knowing that my sweet, loving, smart and beautiful Aunt Sharon will get walk with her Heavenly Father and earthly Father gives me peace.

Aunt Sharon update 10/2/09

First is from my mother:

Yesterday, of course, was Sharon's birthday. I read her cards from mama and me. I did not get much of a response. John got her up and put her in the lounge chair that she likes so much (you know the one, Michelle) and played a concert on TV that she enjoys. I also sang her some hymns, which I think she enjoyed. I asked her if she wanted me to continue singing, and she nodded her head. I'm not sure if she will know me today. She responded to us very little yesterday, although we did a couple of times get a big smile from her. Her friend Kelly had called and asked if she would like to see her pastor (a very nice Presbyterian lady) and I did ask her and she said yes. When I told her they were coming, she looked extremely happy, but when they got here, she kind of withdrew into herself. We had a scripture reading from Psalms and Pastor Barbara prayed a very lovely prayer. We then sat around and told about all our wonderful and cherished memories of Sharon and what our favorite thing about Sharon was. I said that I have always admired her tender and compassionate heart. I also told them about when we were little and Sharon threw mudpies in my face and Sharon giggled.

Last night, for the first time, she did not get a good night's sleep. She jerked and flailed around a lot, which is part of this process. The disease speeds up as it goes along. John has asked my opinion every step of the way about her care, and we both agree that within a couple of days, we may have the need to put her on some type of an IV pump.

As for me, I have an inner peace and strength right now which comes from above. I can feel everyone's prayers. Of course, there are tears, but I am so very glad that I have come to be with her during her last days.

UNCLE BUDDY...

I did go out and get some roses made into a lovely fall arrangement, and they are very cheerful in her room. Thanks again.

Marilyn




From Uncle John:

Sharon has dropped dramatically. This disease is exponential. Sharon is refusing food and water a good bit, and we expect she will refuse it all in a day or 2. Her neurologist made a house call because he has only seen this disease once, and he said she is in the final stages and estimated 4 weeks.

Me and Sharon's sister, Kelly and Kelly's pastor and one of our neighbors were with Sharon today for her birthday. I asked Sharon, "Sharon, do you love me, and she forced out a "yes", and I said thank you". That may have been the last time I will get a response.

The amount of degradation every day is astounding. The dr said the disease is completely in her central nervous system as well as her brain, so there are many striking events that we see from startle fear to spasticity. I saw a big drop from this morning to tonight, and this morning was a huge drop from the night before.

I know this "is not about me", but she has finally gotten to the point where I feel I am at the point to start thinking about the scars this will leave me. Perhaps this possibly explains why so many of my close friends and aquaintences have died over the last few years...to prepare me for this ultimate death. i have to warn everyone when you start to see a lot of death around you, start thinking about something worse hapenning.

The neighbor I mentioned previously: I told him about this yesterday. He then told me that his ex-wife has been in the hospital for 12 years with Huntingtons disease, and his smart beautiful 31 year old daughter just started having symptoms, and his grand-daughter has a 50% chance of getting the disease. I hardly know him, but he sat and rubbed Sharon's feet the whole time he was here, and said that we all must have as much contact with Sharon as possible, since he has had so many years to learn about the realities of neurodegenerative diseases.

So I can say that I would rather see Sharon endure this for a few months than over a decade. So I guess there are bright sides to every cloud.

I now have to wonder where my life will go from here. All of my friends say I have been the most awesome caregiver they could ever imagine, and that they hold me in the highest regard for all of the extrordinary measures I have taken with Sharon. All I know is that I could not imagine anyone would NOT do this for their soul mate and the love of their life.

jf

---

Auntie Sharon Yearbook Memories

This is Andy Hardin with Sharon as Who's Who Most Ambitious. And the class voted correctly on this one! (per Benita Hughes Cahalane)
Sharon is the top right. Her caption says, " I live by the faith of the Son of God who loved me and gave himself for me." Sharon has a very deep faith. (Benita Hughes Cahalane)
Thank you Benita for providing these for me to post........

My Mama

Mom called today and says she is flying back out on Saturday (9/26/09) to WA to stay with Aunt Sharon at least 2 weeks but possibly longer. She is declining pretty rapid. I'd like to ask all of you reading this blog to please be in prayer for her. She is having a really hard time knowing her ONLY sister, her BABY sister is across the country and dying. So is my Grandmother. We all are having a hard time. But my mother is a strong Christian woman and it's been tugging on her heart to go back out and be with Sharon. So please keep her constantly in your prayers. Thank you,
Tracy

Aunt Sharon update 9/19/09

Update from John:

Just returned from Kalaloch Lodge on the Pacific Coast and Mt Rainer.

Sharon has degraded a lot from when we left last tuesday to our return today (saturday). At the beach, I asked her if she wanted to go home, and she said no, and pointed to Mt Rainer on the map. It was all really too much for her. She broke down in tears many times faced with the reality of the situation.

She has virtually lost her right arm. It mostly hangs limp, but sometimes she has it up. Her right leg is starting to go. Her language center is very badly damaged.

Sharon has degraded to where yes/no answers are getting difficult. This is a very huge change. She has also developed a dry cough over the last few days.

We ate out a lot on vacation, and I essentially feed her everything. Sometimes she will snap something off her plate with her left hand.

jf

9/15/09 Sharon Update

Isn't she beautiful?
I'm going to miss her sooooooo much!!!!!!!!


From John:

Sharon, for the most part, has lost about 90% of her right arm and 50% of her right leg. Her walking (with much assistance) is getting worse. Soon, she will not be able to do our stairs even with my assistance, which she has required for a long time.

Hospice nurse will show up today to bath Sharon. We leave for a week tomorrow(at Sharon's demand) for Kalaloch Lodge on the pacific coast. This will be Sharon's last trip. I do not think this is a good idea to do this trip, but it is her wishes.

Sharon's communication has deteriorated to mainly her pointing, and responding to yes and no.

Sharon update

I talked with John via email today. He said her communication is getting worse and her right side of body is getting weaker. BUT she wants him to take her to the Pacific Coast for a couple of days. Apparently a spot she loves. So I believe sometime this week, they're taking off for there. A few of her high school friends have emailed her and sent old pictures. She is truly loved by all. This is a trying time for my family. We're all devastated. It doesn't seem real but we know God is with us every step of the way and there is a reason for this. As Casting Crowns sings, "And though my heart is torn, I'll praise Him in this storm."

"Sharon" as written by her adoring husband John

I would just like to provide a little update, background and assessment so all are not in the dark about what is going on with Sharon Fain.

As for her diagnosis, I was convinced by the neurologist at U of W Medical Center (the second opinion) that Sharon's previous diagnosis of CJD was correct. I made him show it to me specifically on the MRI. I had prepared a detailed timeline of Sharon's illness. All of the tests and treatments that were done ruled out a possibility of anything else known by mankind. Comparison of the two MRIs done 1-2 weeks apart, along with the timeline, confirmed the diagnosis and showed a very rapid progression of the disease. So, as I said, I was convinced, and I am not an easy person to convince.

As for "how is Sharon now", Sharon had a great Saturday with her family (who arrived Friday) from Alabama. She stayed in bed a good part of the day, but ate 2 helpings of "southern food" for lunch, and an awesome dinner, thanks to Cerium Networks.

Saturday was also Sharon's first "up day" in a while, and she had so much fun laughing with her family. They all even watched a football game where the Alabama Crimson Tide beat VA Tech, and she would "whoop and holler" every time Alabama did something good (Alabama football is a religion for her family) and laugh when her nephew would imitate how his father and Sharon's father would act when they were watching a Bama football game. So this is an awesome memory for me to be left with. This was also a highlight for Sharon.

Sharon still, as of this moment, has the ability to comprehend most conversations, but can no longer properly verbalize most things but simple responses like yes, no, thats right, "hell yeah", etc. She even completed a few simple sentences every once in a while this weekend.

Sunday, Sharon dropped a notch, and today, Monday, she has dropped another notch. Soon, I may see losses of cognition as rapidly as between the morning and the evening. This should all go very very fast, and she will be in little or no pain whatsoever.

Hospice of Spokane will contact me Tuesday for admitting her into their program. My goal is for her to stay at home until the very end, or at least until she has zero cognition of any aspect at all of her home. She is very strong, so I believe her body will not go quickly.

Just know that Sharon and I have had a 23+ year marriage that has been the envy of everyone we know. So I cannot convey how much I will be destroyed by this. However, as soon as Sharon's diagnosis was confirmed, and I looked at her and nodded, all fear and despair left her face, and she has been very strong and fearless in the face of death. Her strength has been the biggest thing holding me together.

Also know that very early on, when the symptoms were nothing compared to what they are now, Sharon's biggest fear was that she might never be able to work at the job, and with the people, that she loved so much.

My fears for her were very different. I was afraid of what it would do to her to know that she would never be able to do all of the things that she had done in the past, like climbing big walls in Yosemite, ice climbing in places like Wyoming, Colorado and Norway, sport climbing at world famous climbing areas all over the country, alpine skiing, telemark skiing, skate skiing, cross country skiing, mountain biking down the trails from the top of Mt Spokane or at Riverside Park, cranking out a killer 2 hour step aerobics session in her gym, carrying a hundred pound pack full of climbing equipment uphill all day into mountains to climb backcountry rock faces in the wilderness,etc.

For those of you who do not already know, Sharon has had an awesome life filled with great adventure, more than most people have, or ever will see. Most people do not know that Sharon has been a great and fearless climber for most of the 23 years we have been together. She has accomplished many great feats of bravery.

As for our near future, Sharon will degrade very rapidly. Her great physical strength and endurance may most likely keep her around longer than some doctors predict. However, initially when we thought Sharon may have just had MS, she said she would not want to live her life in her then current condition.

So know that she is at peace with death and how much she loved her family, friends, company and the people she worked with.

She will be missed by you all, and so many more people that have known her for so long. As for me, I will miss my soul mate.

Sincerely,
John Fain