I have to be honest. I have been procrastinating writing this particular post since Friday. Oh, I tried. And it resulted in tears of frustration. Last week was rough. It was not a good week. I kept finding more things during the day that I could hardly do–the last being I could no longer clip my left fingernails. And I use huge clippers! By Friday night, I just broke down physically and emotionally. I looked in the mirror and could not see anything positive.
Since the decrease of my steroids and now back to them consistent, I have been doing stable. I have full energy back most of the time (at least I feel more energetic) and most of the weight I felt on my upper back is lifted. But I feel it affected my hands on a more permanent level: more weakness and numbness–especially in the right hand as my ring finger is now very heavy from the numbness. I also find I have more curl in the left ring finger… when carrying things I don’t even use that finger. I am having a harder time opening things (especially in the kitchen), putting on makeup, putting in my earrings, unbuttoning my pants in a hurry, putting on thick socks, and typing. In a word: slow. I am getting slow.
I am thankful though that my back is not as heavy as two weeks ago. I have only had a few times of the extreme neck pain. At Thursday’s appointments, I saw some doctors from the Pain Management team. They prescribed these special patches that you place on your area of pain and it helps decrease the pain by numbing it. I have not had to use them yet, but thankful for this because it gives me more freedom to still continue things I would have been doing otherwise. When I use the rice pack, I have to hold on to it or balance it and that gets difficult. They also recommended I get a Physical Therapy evaluation and start PT. It was actually one of my questions as I have been trying to work on my posture–which helps balance, strengthen the back muscles, stimulate bowel movement and just help me in the long-term.
Otherwise, my main doctor and I discussed the steroid pills in terms of steadily staying on them for the time being. I have decided against the other two chemo treatments at this time, but really glad that we discussed things…because it gives me a better understanding for if and when the time comes to reconsider the options. I got all my questions answered. 🙂
Right now I am frustrated and sad. I got my left hearing aid fixed and my ear cleaned yesterday and I still cannot hear; Which means I am going to get a hearing test very soon! (Monday to be exact). But it is hard. I now realize how much I depended on my left ear. I cried last night when my dad had to write down what he was saying so I could understand. I think it is time for me to take another lip-reading class and touch up on my sign language…although due to the hands, I focus more on lip-reading anyway.
Remember my very first post of the New Year? (You can read it here). I talked about seeing the birds in the winter…their safe haven being the butterfly bush outside my window. Here almost two months has gone into the year and how easily I have forgotten that God feeds these birds and knows their needs (Matthew 6:25-27). In my own life, I have felt like these birds–in the cold of winter, finding a safe haven among the little branches of the bush even though the wind and snow still are all around. Almost as if when I say, “Will winter never end?” But really mean it more towards all the current health problems…finding new daily obstacles is like waking up to realize you have to scrap off your icy windshield again.
Today my cat led my attention to a male cardinal outside on the branches of the bush. When Muffy’s ears perked up, I looked and there it was: brilliant red. 🙂 Of course all around outside was snow, but there it was…in the gusty, snowy wind minding its own business. As the wind started to blow, the cardinal’s actions resembled how I feel at the present moment: clinging for dear life. I watched for a while and asked myself, “And what am I clinging to?” The hopes that my body will go back to the way it was before? Quite possibly. Like I said…this weekend, I just dismissed everything. I did not really even talk to God, because I did not know what to say and I was trying not to be angry about all these new changes. I get tired of change.
I don’t want to be stuck in the ruts of winter months forever, so I do need a change. I need to change back to seeing hope in all circumstances. It has already started. I have been going around and making notes of things that are difficult and possible alternatives. My family has been there with suggestions and support. And I know that God does see my life living with potential. I just finally have to cling to that promise with my whole heart.
‘Let not your heart be troubled,’ His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Song: “His Eye is on the Sparrow.” To read more about the story of this hymn, click here.
My Life with NF2 