30 Days for Cushing's Awareness

So, last year I attempted to do this, and blog for 30 consecutive days about Cushing's and how it has impacted my life.  I didn't do so well, and I think I made it to day 5.  This year I really would like to meet this goal, and I would love to educate people about Cushing's, a disease I have been fighting for pretty much my entire adult life, and help people understand the path that has brought me to the place I am currently am.  Which is....navigating the referral process for a surgery that will hopefully cure me from Cushing's and save my life, but sadly will also leave me dependent on hormone replacements for the rest of my life.

Stay tuned this month to learn all about Cushing's and hear my story!

Living in the Unknown

I think one of the fears we humans struggle with the most is fear of the unknown.  I think it is the basis for things like racism and homophobia.  As humans, not knowing, is one of the hardest things to deal with.  Yet, as a Christian I believe that in this life I will never fully know, and that I am called to be at peace with not knowing.  I think in my life God has definitely used illness to teach and reinforce this principle.  So much of the past 15 years I have spent "not knowing."  From not knowing what was wrong in the beginning, to not knowing where to go for help, time spent waiting for test results and not knowing what will come next.  It is not easy, and like most lessons God has taught me throughout my life, I have to be reminded to be patient, to trust in Him and in His perfect timing.

Once again I find myself waiting, and sitting surrounded by the unknown.  I actually have a profound sense of peace.  Peace that God will be faithful in all things.  And while I wait for the wheels to be put in motion towards the next decision that will profoundly change my life I am reminded of something I heard once: while you are waiting for God to open the next door, continue to worship him in the hallways!  I feel like I have spent most of my life in dark hallways, but here I am with my hands lifted!

Truths I have learned through illness

Truths I have learned through illness

Psalm 139: 1-12

O Lord, you have examined my heart and know everything about me. You know when I sit or stand. When far away you know my every thought. You chart the path ahead of me and tell me where to stop and rest. Every moment you know where I am. You know what I am going to say before I even say it. You both precede and follow me and place your hand of blessing on my head.

This is too glorious, too wonderful to believe! I can never be lost to your Spirit! I can never get away from my God! If I go up to heaven, you are there; if I go down to the place of the dead, you are there. If I ride the morning winds to the farthest oceans, even there your hand will guide me, your strength will support me. If I try to hide in the darkness, the night becomes light around me. For even darkness cannot hide from God; to you the night shines as bright as day. Darkness and light are both alike to you.

Disclaimer: It is my belief that God did not make me sick, but this is what I have learned about life and God through my illness, and I think many of these truths apply to so many things in life not just the narrow scope of illness

1. God always finds you at your lowest point
   1. There are many times along my journey where I have wanted to give up, and some times where thoughts of suicide dominated my mind. But like the Psalm, there was no where I could hide from God. Even when darkness covered my life His light shined around me, and even though it was sometimes just the smallest hint I always felt His presence when I sought after Him.
2. God uses illness to both teach you and to bless others.
   1. Very recently after I had had to leave school and give up my job due to illness I was struggling, financially, emotionally, and physically. I was surrounded by many great Godly friends who wanted to help, but I had a hard time accepting that help. One day a very good friend sat me down and told me that I was being selfish and prideful by not allowing anyone to help me. I had never thought of myself as prideful before, I worked in social work, spent a lot of time volunteering, helped others...but she pointed out that by trying to do everything on my own I was not allowing God to work in my life through others, and I was actually denying them the blessing of being able to help me in my time of need. It was a profound lesson in my life that I know God taught me through illness, and through a friend who was bold enough to call me out. Accepting help is something I still struggle with, but God often reminds me of these moments in my living room that day, and I can feel my heart chnge.
   2. On the flip side of that, God has used my illness to put me into situations where I have been able to be a blessing to others. I get to interact with nurses and doctors on an almost weekly basis, and share my testimony of hope and peace through illness because I have Jesus Christ in my life. I have even been able to help strangers get the medical care they needed because I had just recently walked a similar path. I thought my ability to help people was over when I had leave medical school and social work, but I am continually amazed, although I know I shouldn't be, at the people God places in your life that you can be a blessing to just through the smallest of gestures.
3. Trust God
   1. With your finances, your resources, your health, your everything. Nothing you could ever accomplish on your own would eclipse what you are able to do when you turn it all over to God. When I was first being diagnosed the medical school held fundraisers to help me pay for the travel and testing I needed since I had no insurance while in medical school. The money that was raised was the exact, I mean exact dollar amount that I needed to pay for that initial trip and tests. There have been many occurrences since then where I have gotten random checks in the mail at exactly the time they are needed, or a day when my pain disappears and I have extra energy in order to do something special. When you give it all up to God, He will never cease to amaze you at the things He does in your life.
4. My energy is precious
   1. Living with a chronic illness it doesn't take long to learn all of the things you can no longer do. Where I used to be able to work 2 jobs and go to school, a good day now is getting dressed and making it through an entire trip to Walmart. I often feel bad that I have to tell my daughter that I am not up to taking her to the mall or going for a walk with the dog, but I have learned how to make the time we spend together deeper and more memorable. A day off school where she can cuddle in bed with me and watch movies; when I have to cancel plans because of health I try to do something at home like a mother daughter spa day. I have learned that instead of trying to cram more things into my day, I need to make the hours in my day MATTER more. I have also learned I don't have the time or energy for negativeness in my life, whether it is my own or other people's. I have learned to surround myself with the positive because if I only have a few good hours in the day I want to spend them in the best way possible.
5. Along those lines I have also learned to see small things in life as blessings and miracles
   1. During a chronic illness it is often hard to see the good things that are in your life. Actually I think this is a problem many people face no matter their situations. But when I lost my job, my cognitive function, my physical functioning, my friendships, and a list to long to enumerate to illness it was hard for me to see the good things left. Over the years, and through the help of friends and strength of God, I have learned to appreciate the things I can still do: get out of bed each morning, drive where I want to go, spend time with my family. I see blessings in small things like a day with no pain, being able to walk around the mall (even though I might pay for it later), long conversations with my daughter. And God has really opened my eyes to the miracles that happen in life all around us. I just had to learn to change my attitude and mindset to look for the positive in life, instead of dwelling and living in the NOTs and CAN'Ts and IMPOSSIBLEs.
6. My TRUE identity is in God
   1. Part of learning to live on the positive side of tings for me was learning to find me true identity. When you go to a dinner party and meet someone new you usually introduce yourself and tell what job you do: doctor, sales rep, homemaker. In the beginning for me though I lost two things that were paramount to my sense of identity, being a medical student and being a social worker. Besides just losing the title and a way to introduce myself, I lost friendships with co-workers, a sense of belonging, my sense of future, and really a sense of usefulness or purpose. I think of all the things that illness took away this led to the most depression for me. It took a long time for me to start to identify myself outside of a profession and see myself as God sees me. What were my good attributes, what was my purpose in life, one God-given that could never be taken away? I found that a lot of those things that made me who I was were wet led me to careers in the helping fields. I was not defined by job, but instead by the attributes of compassion, a desire to help and serve, patience. It is not often that we are essentially stripped bare in life and given the opportunity to examine ourselves intimately. By losing my sense of identity, God gave me the opportunity to truly find myself.
7. Lastly I think I will wrap up today with something I think we all know but often forget-Life is fragile
   1. None of us wants to be reminded that our time here on Earth is finite. That the number of days we have to spend with our families are limited, and that none of us knows the day or the hour when that time will run out. Well, living underneath the cloud of illness that fact is not often far from my mind. There have been times of medical crisis when we didn't know if I was going to make it through the night, out of the next surgery, live through the next few months. I am constantly aware of the fragile and temporary nature of life. It colors my every decision, every relationship, and even my time with God. Many years ago I came to peace with the fact that I may not get to live a long and healthy life. I thought I might never get married or have children, that those things weren't available to a young woman with chronic illness. But God in his awesomeness answered those prayers of my heart, and actually used the circumstances surrounding my illness to introduce me to my husband and daughter. Now I take advantage of every minute and every opportunity I have to make those moments count, because I don't know which one will be my last. I don't know if it will be sudden, or if I will get a chance to say goodbye. I try to remember not to hold onto anger or resentments, because I don't want those to be the last things my loved ones remembered of me. I pray daily that I will live to see my daughter graduate, get married, have children; that my husband and I can grow old together, and I never count God out that He may just grant these prayers too. But I was reminded just last night that life is fragile when my sister in law lost a good friend; a single 30 year old mother of a four year old little girl; who died suddenly, no notice, no goodbyes. And I actually thank God in those moments for the perspective that illness has given me: our time here is limited, learn to strip things from your day that are unnecessary, focus your energies on the positive, seek God daily especially in times of trouble, and love those around you like there is no tomorrow because it is not guaranteed.     

Life's Unfair!

...but we all know that already.  Sometimes I feel like that line from Bruce Almighty, "God is a mean kid with a magnifying glass."  Ok, so I don't really feel that way.  But it sure does seem like some people have a disproportionate amount of bad things that happen to them, while other people seem to skate by in life while avoiding all of the potholes.  I try very hard to focus on the blessings in my life, and not the deficits; to be thankful for what I have and not covet things I don't.  But I am so far from actually achieving this ideal in my daily life, it is probably laughable to God.  I suffer jealously often, I am often depressed by thoughts of what I can't do, and I long for the things I can't have.

This has been magnified one hundred times lately as we have begun talking about adopting a child.  I came to peace with the fact that I would not have a biological child a long time ago.  But God has blessed me by bringing many children into my life, through friends, work, church, and now the beautiful girl I call my daughter who belongs to my fiancee.  However, I have always had a longing for a baby,  a desire for a large family, and a heart for children with disabilities or who were just tossed aside for whatever reason.  I would love to adopt.  I think I would make a good mom.  But as we have begun this journey I have come to realize that I might as well wish for a million dollars to appear on my dinner table tomorrow morning, that is about the chance I have of becoming a mother through adoption.

Many agencies have a marriage requirement.  They require couples to be married a certain number of years, and it one spouse has had a divorce that number is usually increased.  Well, Brian and I have been putting off our wedding for a year and a half because of health and financial reasons.  I guess in 5 years we will be good enough to give an orphan a loving and permanent home.  Don't get me wrong, I understand the need for rules like this.  These children have been through such upheaval and trauma in their short lives already, you don't want them to have to go through the distress of divorce.  But longevity is not a great indicator of marital bliss.

Well, regardless of if we had been married 10 years or not most agencies will not even consider you if you have had a major illness, currently have a chronic illness, have taken anti-depressants or been to psychological services in the past 2 years, or have ever had cancer.  So strike one, two, and three for me.  It was like a knife to my heart when I realized that the disease I have been fighting for the last 10 years, fighting to live, to have a family; may be what costs me from adding to our family in any way.

I see so much need out there.  So many kids in orphanages, group homes, in abusive situations, people who just don't "want" their children.  I believe I  could offer a loving home, I would love to raise a child of my own, however they made it into my home, but life is just so unfair sometimes.

Procrastination and Pain

I am a terrible procrastinator. Anyone who knows me would agree with this. I am a Pisces, I have huge ideas, and a room full of projects that were started and never finished. I am terrible about sitting down and writing, but I really want to make an effort with this blog. Even if only one or two people read my posts and are more informed about Cushing's then I consider that a success.

 I have felt for quite sometime that I have had a recurrence of Cushing's but I was told by my doctor that it was just taking my body longer than normal to recover from my Pituitary surgery. I even read a chart note that said "patient is unhappy with her life and is just looking for something to explain her problems." That really hurt, as I actually respected this doctor. So after that experience I resumed working with the specialist that diagnosed me in California.

 I have been doing scores of 24 hour urine collections, salivas, and midnight blood draws. My fridge has been full of orange jugs of pee and my freezer stuffed with vials of spit. My family loves it! It has finally paid off. Two weeks ago I had a phone appointment with my doctor and after evaluating my labwork he agrees that I am having a recurrence. I had hoped he would say let's move on to a BLA (bi-lateral adrenalectomy), where they remove your adrenal glands and you essentially trade Cushing's for Addison's. But unfortunately he felt I am "early" in a recurrence and he wants to try a medical approach first.

 I have been wary of trying a medical approach (it doesn't always go so well for people with Cyclical Cushing's). One of the local doctors in Arizona wanted to try a medical approach before my pit surgery but I would rather take the surgical option which has a chance of cure or remission than just suppressing the effects of cortisol with medication. But now I am at a place in my journey where I don't really have a choice. I take the medication and hope for the best or watch and wait as the Cushing's symptoms all return and get worse. Luckily I belong to a wonderful support group of amazing people who gave me lots of great suggestions for starting this medication, Ketokonazole. And I am also surrounded by a wonderful faith community who is lifting me up in prayer. So far (3 days into it) I have only experienced some mild nausea and fatigue, and a slight increase in my chronic pain. I am expecting it to get worse as this week I only started out at half the prescribed dose, so ask me next week how I am doing.

 So what is the plan? I am going to take the Keto, keep putting one foot in front of the other, and hope that either my neurosurgeon sees a surgical target (new tumor growth) on my most recent MRI, or that my Endo decides my case finally meets the criteria for a BLA. I just pray for the faith, strength, and trust in God to just walk my path with an attitude of gratitude each and every day.

The List

10 15 20 Things Cushing's has stolen from me (in no particular order):

1. My youth
2. My independence
3. My girlish figure
4. My memory
5. My identity
6. Time
7. My health
8. Money
9. Freedom
10. The ability to have children
11. A normal life
12. Sanity
13. Relationships
14. My IQ
15. Sleep
16. Physical strength
17. Stamina
18. My hair
19. My ability to enjoy food
20. My life....

Cushing's Awareness Challenge Day 3: Educate yourself and save a life!

Cushing's Awareness Challenge: Day 3

One of another wonderful thing about chronic illness is that when you have to get into your hidey hole because there is a tornado coming towards your house you have to make sure you have 1.) all your medication, 2.) emergency medication,s 3.) medic alert information, 4.) water (to take said medications), 5.) oh and everything else you are supposed to have in your emergency preparedness kit! Just one more way Cushing's livens up my day. Now back to my hidey hole...see everyone tomorrow!