Wednesday, March 16, 2016

Sharing News

"I notice a few areas of concern on your PET results. I want to have the radiologist look it over before I do or say anything."

Can I share something with you? When Tim told me the doctor had said that to him, my heart sank.

With adrenal insufficiency, my body cannot handle stress well at all. So to think that Tim might have cancer again made me feel panicky, nauseated and like I was about to pass out.

I just feel like a failure at times. I would like to think that if someone needs me, I can be there.

Later in the afternoon, Tim's doctor called to say that the radiologist said everything looks good. When I got off of the phone, I started crying.

We have no idea what these areas were that caused concern other than that they were around one of his shoulders. All I know for certain is that we are thankful that all is good and we will pay attention to shoulder things when he goes back in 6 months.

Wednesday, March 9, 2016

A Letter to Addison's Disease

Dear Addison Disease,

You have been a part of my life for one year now and I thought it was time that I introduce myself to you.

My name is Leigha. I am married to Tim. We will be celebrating our 28th anniversary in May. I have three children. My oldest is Phillip. He will be turning 27 on the 22nd of this month. He is married to Shannon and they have one son; Joshua who will be 1 in May. Taylor will be 20 in June. He attends Tennessee Tech and is about to finish his sophomore year. Jacob is 18 and will be graduating high school this May.

I enjoy reading (I am a big Harry Potter fan), crocheting, writing/journaling, blogging, creating images with Paint Shop Pro. I love having everybody home and thinking of the possibilities of doing things like late breakfasts, board games, or Wii games with everyone.

Since you have come along, though, I find that I do not have energy for anything. I am tired all of the time. As sad as this is to say, I have to take medicine in order to manage through each day just because you are now a part of my life. And I still do not have a lot of energy.

I do everything I can in order to learn more about you. I just want to know what I can expect from someone like you. What I read, though, I have to be honest here and say that it scares me and it breaks my heart.

Some people who deal with you manage just fine. They function well enough that they take part in marathons. These people are my heroes.  Some people are in the hospital a lot and have to deal with hospital staff that either do not believe that they really need help or maybe they just do not have a clue as to who you are. Some people are in a coma and all I know that I can do is pray and pray, oh and pray some more.

I want my life back. I want my normal back. I want to press my "easy button" and make you go away. I want to wave my wand, say a spell and send you somewhere else (maybe capture you in jar where you can't hurt anyone else).

Since you are now a part of my life, I have all of these other issues that I am almost positive started because of you. I no longer crochet. Just thinking about it breaks my heart. I do not write very often either. I just have so many pains, no energy,  and I am tired all of the time.

I hope that you will not find this rude, but I am ready for you to leave. I do not want you to be a part of my life any more.

Sunday, March 6, 2016

Officially 1 Year

Can I share something with you? It seems like it does not take much at all, lately,  and I just burst into tears.

This morning, Tim and I were talking about the need we have to start de- cluttering.  He wants to start with our closets and then slowly expand outward. As we stood there talking about my closet, he mentioned my yarn and I said, "it will make me cry" <--- meaning that when we start going through it, I will cry. Well, as I was saying this to him, I started crying.

Okay, let me explain, I have a lot of pain that I deal with. My hands hurt all of the time, but honestly, I hurt everywhere. It has been about a year since I have crocheted and just thinking about it makes me cry.

Have you ever watched something on tv that has made you cry? How about a commercial? I don't even know what the commercial was for (might have been over active bladder), but the family were bowling. I saw this and burst into tears. I am not even good at bowling, but I have been thinking for quite some time that it might be fun, even if it was just me and Tim. Now, I think about it and know that I would not be able to manage it.

I have no idea what is causing all of my pains. My endo started me on growth hormone injections, but that did not work for me. She told me to stop taking the injections, but guess what? I am still dealing with pain.

She has also told me to cut back from 20 mg hc to 15 mg because I have gained too much weight. While I have accomplished this goal, I do not feel that I am doing very well. I manage okay during the day while it is just me and Pixie, but in the afternoon, when the doses become smaller and I start to have more activity in the house, I get easily stressed and find myself needing to sit so that I do not collapse. I also feel like I am dealing a lot more with depression.

March 5-9, 2015, I was in the hospital waiting for my sodium numbers to come back up. I was officially diagnosed with secondary adrenal insufficiency during this time.

Wednesday, February 24, 2016

Hope For the Future

You know what? I just want to be able to forget. I know that we all have things in our lives that we wish we could forget. What is that thing for you? Is it a bad decision? Is it something hurtful that someone said to you? Is it a diagnosis that turned your world upside down?

I am trying hard to look ahead to things to come. Something, some date, event, etc, that I can look forward to. Instead of looking back and trying to forget things that are over and done with, I am working on placing my hope in the future.

Yes, I have things that I want to forget. I struggle everday in the here and now trying to figure out life with this diagnosis and that one. However, it is my hope that one day I will have everything figured out.

It is my hope that one day I will be able to crochet again :).

Tuesday, February 23, 2016

Slow and Steady

February 23rd, 2015; that is the day that it all started for me. I had my annual gyn. visit that morning and that afternoon, I had a major headache.

The following day was a Tuesday, Tim had another round of chemo which meant that he was in the hospital for a total of four days. I woke up not feeling good. I felt very nauseated and did not have any interest at all in eating. I felt bad the entire time that Tim was in the hospital.

I am never sick; never. So if I get a stomach thing, my first thought is to let it run it's course. Usually, I feel better within a day, maybe two. Not this time. I was sick for 9 days. Yes, you read that right, 9 days. I could not eat and if I did, I threw it right back up. Before that ninth day, I had Tim call our pcp to see if he could fit me in that day only to be told that he doesn't see sick patients on Wednesdays. Oh, I'm sorry that I did not time my sickness better, silly me. So, I did the best I could to make it one more day until I could go in to see him. However, it snowed and the office closed, "sorry not seeing any patients", so I had Tim drive me to the er as I knew that I would not make it the weekend.

I was poked and prodded until they discovered that my sodium levels were very low. Your sodium number "should" run around 135, mine was 112. I was put into what was called a "step down" room, meaning it was one level down from ICU and placed on seizure watch.

I was started on steroids and monitored until my sodium numbers came back up. I was in the hospital for 5 days. It took every bit of that time in order for me to just stop throwing up.

I was sent home, with follow up appointments,  prescriptions to be filled and was told, " if you throw up again, go back to the er." Oddly enough, not one of my prescriptions were for zofran or phenegran.

By the time I had made it home, I felt so overwhelmed by everything. I knew that someone had mentioned adrenal insufficiency,  but everything else sounded like, "waaa waaa waa waa waa waa," you know like Charlie Brown's teacher. Nothing made any sense. So why did I get sick? Why did I start throwing up and then why was I not able to stop?

It has now been a year and just spending the time to type this up has taken a lot out of me. I have had to do it in stages.

Adrenal Insufficiency is a disease that is a learning experience. A lot of what I do to just make it through each day is trial and error. I finally get to a point that I feel like, "ahhh, I have my dosing figured out" and my endo tells me to cut back on the amount of hydrocortisone that I take.

I have learned, over the past year, that I have a craniopharngioma or pituitary tumor. So far, it is not changing, so we are waiting on having surgery.

I also found out that I am growth hormone deficient and was placed on injections back in November, but they did not help at all. I had hoped the injections would help with some of my pains and my hair loss and that I might regain some energy. Hoever, I developed brand new pains and had to stop taking the injections.

I have learned that I do not have to go behind everybody and cleanup after them. That has been hard for me to learn. However, I have to gaurd my energy (I hoard spoons), and I am just in too much pain to continue being the maid.

I am doing the best that I can. I may be slow at what I do now, but it is the best that I can do. Slow and steady wins the race, right?

Tim is doing great. He goes for another PET scan in March. Taylor is doing great at school. Jacob will be graduating high school this May. I was able to spend time with Joshua at the beginning of the year and I will get to see him (his mom and dad) again at Jacob's graduation.

Slow and steady, one step at a time.

Monday, June 22, 2015

Be Brave Say No

Let's take a few minutes and reflect over our lives. As you look back, can you see the many wonderful blessings that the Lord has given to you? Now, focus on the times when He asked you to do something. What are your "yes" moments? What are your "no" moments?

For me, I said "yes" to a first date with Tim. I said "yes" to getting married and to having 3 wonderful boys. I said "yes" to working in childcare during those times that we needed extra money. I said "yes" to being a stay at home mom.

During a hard point in our marriage, I said "yes" to fighting and I said "no" to giving up.

There is a time that I think about when I reflect on yes' and no's. A time where Tim was in Johannesburg on a missions trip and he felt lead to move to Johannesburg. He asked me to pray for guidance without actually letting me know what he was thinking. So I started to pray and had a couple of dreams about packing up everything and moving and working with children. When he made it home from that trip, I told him about my dreams and he said that he felt lead to move to Johannesburg and work in children's ministry.

We never did follow through with that leading. What did we end up passing up on?

As I think about things right now, today, I am learning that it is okay to say "yes" to resting when the need hits me. With adrenal insufficiency, I have a hard time maintaining a good energy level. So I easily find myself exhausted. When that feeling hits, I know it is okay to saying "yes" to taking a rest.

A hard thought for me is that I am also learning that it is okay to say "no" to things as well. If I do not have energy, it is okay to say "no".

A big "no" this year is going to be "no, I will not be going to this band competition. " This is Jacob's senior year and I do not like to miss out on things, but... I am finding that it does not take much to completely overwhelm me. So I will miss out on some competitions, but I will better be able to take care of myself.

Being brave for me is knowing that it is okay to say "no" and to be able to take care of myself.

Monday, June 15, 2015

Updates June 15, 2015

April 14, 2015 is the day that we officially found out that Tim is Cancer Free!

May 5, 2015 is the day that our first grandchild arrived into this world. Joshua Alexander weighed 4 pounds and 10 ounces and was 19 inches long. He was born 6 weeks early and spent the majority of his first month in the NICU.

May 18, 2015 is the day that I met with my pituitary specialist. I found out that the stalk the connects to my pituitary gland is supposed to be a thin string, but mine is almost the same size as my pituitary gland. I also found out that my immune system is attacking my pituitary gland. I guess that means that I have been healthy for so long that my immune system got bored.

Dr. Utz, the pituitary specialist, has put me on a high dose of steroids for 6-8 weeks in hopes that we will notice a marked improvement in the swelling and inflammation around my pituitary gland.

I am now at the point of taking 16 mg of this steroid three times a day. My blood pressure is up, my heart feels like it is going to pound out of my chest, I sweat A LOT, and I have developed a painful rash on the side of my right breast. Oh the joys!

I do know that everything I am experiencing is something to be expected while taking this high dose medicine. All I have to say is that I will be so glad once all of this is over. I will endure this time and keep praying that things improve and I do not have to have surgery on my pituitary gland.

All of this has been a learning experience for me. And sadly enough, I feel so alone. I just do not have anyone around to talk to about any of this.

On June 7, 2015 I walked out into the garage and fell down the three steps that lead out of the house. I banged up the back of my left leg just above my ankle, hurt my tushy and the fire extinguisher fell into my back.

I managed to get back into the house, had Taylor turn on a fan and point it at me, Jacob brought me a Sprite and I started up dosing with my meds. I almost passed out.

I know, you must be sitting there wondering why I would have almost passed out. Well, I am still learning about all of this. Since my adrenals do not function like they should, they do not produce the hormones my body needs to handle certain stressors, like falling. Things try to kick into gear, but when they can't, I start to panic which leads to hyperventilating and then passing out. Just thinking about all of it is stressful.

Even good events in our lives can be stressful situations. Like when Joshua was born, we drove out to Oklahoma to see him. It was great! But I now know that I probably should have at least doubled my meds for the ride out there and back. I was completely  worn out the whole time we were there. See, learning experience.

Since being on this high dose of meds, I sweat a lot. Of course, the temps have been reaching into the 90s every day. All I can manage to do is sit with a fan blowing right on me. To do much else takes so much out of me.

All of that being said, I want to say that I am dreading band competitions this year. The heat is just too much for me, it doesn't take much for me to feel overwhelmed and panic, I can't walk for great distances, can't manage steps. I just dread it so much. I am honestly thinking that I might only try to go to one or two comps this year. I hate missing things and this is Jacob's senior year, but I hope that he will understand (and that Tim will too).