
Unfortunately Savella did not work out. I had bad anxiety, which is one of the side effects. I have anxiety as it is from dealing with my frustrations of not feeling well. My husband graduated with his Bachelors degree last week. The graduation started at eight in the morning and went until twelve and we were going to have a luncheon afterward. Did I mention his grandma loves to take tons of pictures whenever there is a family event? I knew there was no way I could make it that early and stay all four hours without being in exhausted for days. I got so anxious thinking about the judgment I could possibly get from his family for not being there the whole time. My sister decided to come with me for support and we went to the last part. Luckily it was freezing outside and we didn't take too many pictures. My husband decided we should come home and rest before we went out again for lunch. My mother came to the lunch too, which gave me courage to know I had double support, just in case an in law said something hurtful to me. I really think someone was watching out for me, because everything worked out. I am also very blessed to have a husband who knows that I still love and support him even though I can't sit through a four hour graduation!
I am learning that a lot of joy is being robbed from me because of the constant health issues I have and I need to put more happiness and joy into my life. We all need to do this because lets face it, life is hard and we are all going to go through difficult, cruddy experiences. I asked myself these questions the other day and I continue to ponder on them. 1. What can I learn from this? What does God want me to learn? Until my day of healing arrives how can I get through this? 2.What brings happiness into my life that can help me get through each day? 3.How can I help others who endure similar challenges? Question 3 I think no matter what our trials are we can gain strength from each other. Hard is Hard I don't think it matters if you are chronically ill or lost a loved one, going through a divorce, we can all draw strength from one another.
I had a really hard week that was just drab and depressing. The next week was my birthday and my family had a dinner for me, my husband took me out one day, and we went to the movies. Life was such much easier that week and I think it was because I had exciting events to look forward to where I could escape from my problems. So what I got from this is I need to plan activities to look forward to. We went to the BYU Carl Bloch exhibit this week. The wait was long so I ended up getting a wheel chair. The pictures of Christ were so inspiring. I loved one in particular of Christ in the Garden of Gethsemane. A beautiful angel has come down to comfort the Savior and she embraces the suffering Christ. I like to think that God sends us all angels to comfort us in our times of despair. The painting also reminded me that Jesus suffered for the sins and sorrows of all of us and he is there for me to turn to. He knows how I am feeling and what I am going through.
I find a lot of peace by writing in a gratitude journal. I try to think of 5-10 things I am grateful for. I'm going to break the rules and share some top secret journal entries with you. Here's an example+ of what I wrote in my journal on April 26th.
1. I am grateful I had the energy to teach piano to a delightful student who practices and wants to learn!
2. I am grateful for my new hair cut. It's shorter and so easy to style and look cute.
3. I'm grateful for the opportunity to sing Cecil Gates Easter cantata on Sunday. I spent my energy carefully each Sunday so I could make it to the practices.
4. I'm grateful for the darling slide show my mom made for my birthday and put online. She is so thoughtful
5. My dad took us to Olive Garden tonight and the food was delicious
6. I am so thankful for my sweet husband
I must close by adding that I read an interview with the author of SeaBiscuit, Laura Hillenbrand. She has had CFS for a long time and decided to talk about it in an interview with The New York Times. Her first onset was when she was 19, so you can see how I was very drawn to her story. I was so happy she spoke publicly about the reality of this illness. Her story gives me hope and courage!
5 comments:
I am moved by your beautiful entry. Thank you Desiree....you inspire me!
Hi Desiree,
Thanks for blogging your experience for everyone. This is very helpful for everyone. I have been reading around the blog and it seems that you were having really good results with Valcyte but stopped taking it for reasons of anxiety? Is this right? What happened when you stopped taking it?
I have been taking it for 2 months and have had no heavy attacks of fatigue. Now I'm trying to figure out how long I should take it considering I don't have as bad a case, at least not anymore, than you have had. Just not sure whether Valcyte is actually killing the virus or just holding it in check.
Thanks,
David
Hello! I'm new to the blogging world and recently found your blog. This was a lovely post. Like you I am learning that thankfulness and joy are precious medicine to the heart.
I'm sorry to hear that Savella did not work out. I myself may start it soon in a study.
I'll be praying that this new week is filled with joy.
Blessings,
Sarah
David- Along with anxiety I also got a rare side effect of valcyte, peripheral neuropathy. It is very painful and I still am dealing with it 3 years later. I think my quality of life would be so much better if I didn't have to deal with this stinkin' pain! I didn't get enough relief from fatiuge for me to want to continue valcyte and put up with the side effects.
I am still so perplexed as to why valcyte cured the first study of Dr. Montoya's patients and not me! I am so glad to hear that it is helping you so far. If you don't have terrible side effects and are seeing improvement maybe you should stay on it. It's a hard call to make. I hope it continues to help you. I would love to hear in the future how it works out for you. Please let me know!
-Desiree
Thanks for sharing this nice post with us. I like your blog very much and want to revisit to get new post with great information/experience.
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