Tuesday, May 6, 2014

New Treatment Plan

Last Wednesday (April 23rd, 2014), I went for my monthly appointment with my specialist in the "big city" (1 1/2 hour drive from home, one way). I was prayerful and hopeful that there would be some more options put on the table for treatment of my newly-diagnosed chronic fatigue syndrome (CFS). (CFS was a diagnosis confirmed after the initial diagnosis of adrenal fatigue, stage III.) CFS also exasperates my chronic pain syndrome (CPS), fibromyalgia, and other neurological and pain conditions. It has also affected my mood...you can imagine how you would feel if your body forced you to stay in bed for the majority of the day, despite many needs that must be attended to.

I have been on the first step of treatment for CFS since I was diagnosed in late February. This includes a type of hormone therapy that attempts to re-format the functions of the adrenal process, which is the cause of the CFS. Patients that have this type of CFS (caused by adrenal fatigue in the later stages) really need to go through with an effective treatment for the condition. The consequence for not going through with an effective form of treatment is Addison's Disease, which is a more severe form of hormone and adrenal insufficiency.  When Addison's Disease plagues the body, you lose almost all ability to produce these hormones, which help you respond to stress (including illness, injury, emotional responses, etc.).

So my options were somewhat limited. We stuck with the first step of the hormone therapy and kept building up the dosage over time. It left me feeling even more fatigued as my body fought the purpose of the therapy, which meant that the treatment was working (fortunately). My doctor even warned me that it would be a difficult phase of treatment, and that I may have problems tolerating it. I did, indeed, have those side effects. The doctor said, however, that he had never heard of someone's fatigue levels sky-rocketing like mine had done during the course of treatment with this medication. I was hardly able to climb out of the bed in the mornings before treatment....it felt 10 times worse after we started this first phase of treatment of hormone therapy, and the fatigue lasted throughout the entire day. It didn't help that I had the responsibility of taking care of two little guys. My solution was to drink a lot of caffeine. I didn't feel like this was a very healthy alternative, but I did feel that I had to take care of my boys. Therefore, I did what I had to do. It is very common for fatigue levels to increase by a decent amount during the time of treatment; however, it is not common for fatigue levels to increase this drastically. The doctor took note of my extreme fatigue levels due to treatment and my concerns, and decided to add an additional medication to help with energy and begin the second stage of treatment (to move things along).

Once the dosage was built up high enough (2 months time), the doctor was able to add an additional form of hormone therapy to my regimen. He and I both were very hopeful that this would boost my energy to where I could begin to get out of bed more easily, stay out of bed during the day, do a few chores here and there, play with the boys (instead of napping in the floor while they play), and simply being driven to do a few things again. The medication was prescribed three times per day - two in the morning and one around noon to 2 p.m.

I got my prescriptions filled and was very anxious to get the treatment started. From the first dose, I noticed a difference in my pain and fatigue levels! Was it a coincidence? The next day came, and I took my dose of two pills in the morning and one around lunch time. Once again, I found myself able to get out of bed and stay out of bed! Over time, the dosage has built up and become slightly better. This week, I sewed the boys 2 super-hero capes, 2 super-hero masks, 1 doctor's vest, 1 police officer's vest. You have to be in this body to realize what a miracle it is for me to have pulled out my sewing machine and actually have finished several projects. And the act of sewing is so therapeutic for me.

I have felt more up-beat because I am no longer "bound" to the bed. I still have fatigue, and I still take my naps when I can. But overall, I feel like God has granted me a small miracle through this second medication in the process of hormone therapy.

Needless to say, there was initially a lot of discouragement down this road (for the last 3 months - up until this new treatment option). It may seem like a silly thing to some of you, but when you add this on top of my chronic pain issues and other medical problems, it becomes a much bigger issue. This is not a simple problem that a cup of coffee can fix (I've tried several cups...lol). My sweet Lord has been teaching me more and more about leaning on Him always. I've been utilizing a few verses this month in particular. Isaiah 41:10 is hanging in our dining room as a constant reminder - it's been a very useful tool and a timely reminder on many occasions. Romans 5:3-5 also serves as a great reminder that every hardship we experience in this life is for a greater purpose. I have definitely been learning further patience, endurance, and trust in my Primary Care Provider ;) (the Great Physician).

Isaiah 41:10
Don't be afraid, for I am with you.
Don't be discouraged, for I am your God.
I will strengthen you and help you; I will hold you up with my victorious right hand.

Romans 5:3-5

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
*This is a post that is meant to inform friends & family of my condition and the facts surrounding my condition. Any information in this post is NOT meant to be supplemented as medical advice. 

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