900 Words To Say I Can’t Blog

Post 4 of 84

I’ve been having a very difficult time getting a post out. I’ve also found it difficult to reply to comments. It’s been very frustrating because it’s something I have found a lot of comfort in as well as strength and motivation. Looking at the big picture, I guess it’s not so bad. I began this with the intention of continuing to the end. That hasn’t changed, and I believe I have a lot more time left.

I used to sit at my computer and let the words flow onto the screen, but lately I end up staring at my monitor while words elude me. I used to feel comfort in sharing with my readers on my public forum and privately. It’s great on both ends to know another person really understands. I have spoken with a few people who have told me they have experienced this same feeling as a blogger and it will end. That has been comforting to know. I’m waiting. I have so much more to say.

I do want to say to people who have reached out to me and haven’t received a response that I will do my best to get back to everyone. I appreciate people sticking it out with me. I’ve had many people say they’ve felt comforted over something they can relate to. The feelings are mutual and I don’t want to lose that, or not respond to a person who having a response may change their day for the better. No matter the progression, we are all in this scary situation together and need each other.

I’m still living in my home, meaning I’m still in the den. The clutter is building daily it seems. My husband is juggling everything and as much as I know he tries, I feel like the house is not clean enough for showings. I dwell on that, I’m sure, too much. I try to just dust and organize my cluttered shelving beside me and it ends up a crazy mess. I know moving won’t solve everything, but we are very cramped down here and even though I make it in, the door framing to the bathroom looks horrible. The outdated sink in there is horrible for me to try and wash my face and brush teeth. The mini-bar sink in the den is impossible to get to. I do have a table in the nook I can pull up to and use my lighted mirror for make-up. My husband still has his office upstairs but also has a computer down here for work with a very large monitor all sitting on the bar that I often come close to knocking off. It’s slow moving to get to the bathroom. Ok, that was more complaining than updating. It still felt good. Maybe this will get me back in the saddle.

That reminds me, we had planned to go on a horse ride at a nearby stable on a guided, beaten path with well taken care of horses. I was looking forward to it, but was advised not to do it at my last Emory visit.  I feel like things are getting away from me. I’m starting to miss opportunities and that scares me. After thinking about it, the advice was right. I have weak core muscles and it could be bad if I fell off, even a very gentle riding horse, and getting on is probably nothing like the last time I mounted a horse. Sometimes it’s hard to know your own weaknesses with ALS. It’s very sneaky. Also I mentioned a surgery a couple of posts back. I thought I was approved but waiting on appeal. Should know soon. I will be very devastated if I’m unable to get this. It will improve the quality of the rest of my life with ALS.

Glancing at what I’ve written, I do have a lot of personal stresses going on as well as many more private things not mentioned. Even though this has been the case since the start, I think it’s a factor in my writing difficulty now. ALS has a way of making even a minor upset a huge ordeal.

I’m still holding strong with improvements from my stem cell surgery. For those who may be reading for the first time, I’m in the phase ll Neuralstem trial and received 20 cervical injections equaling 4000,000 stem cells. I’m coming up on nine months post surgery. I don’t feel like I’m continuing to improve at this point, but I feel I’m holding very steady with the gains I had. If you read back or are a regular reader you know I had some impressive results. Sometimes I want to say my right wrist strength is deteriorating some, but then again I use it much more so it may just be tiring more. The most frustrating thing is I had a huge surprise with increase in leg strength. I can push harder against my husband during range of motion exercises, but still can’t walk. They don’t feel as strong when I’m standing and have my weight on them. My feet, ankles and knees hurt badly for the very short distance that I do walk daily using a walker. Actually my legs as a whole ache a lot, my right front quad still cramps up and is really painful. I hear too often ALS is painless. That has not been the case for me.

I’m going to stop here. Wow! It took me well over 900 words to say I can’t write anything. I hope this means I’ll be back as usual very soon.

A big thank you to my followers for sticking it out with me, and thank you to my new subscribers who have stayed with no new posts.

Until next time, take care.

April

 


 

 

April

This article was written by April

9 comments:

schmidhoganJune 24, 2014 at 10:12 amReply

Glad to see you’re back in action. Don’t let so much time go by before your next post. Your readers will, otherwise, become worried. Alex

April AprilJuly 2, 2014 at 2:29 amReply

I do think of that and try not to leave readers hanging. I worry about others when they’re not writing as usual. Sometimes we have to do what’s best for our own situation at any given time. Sometimes that means disconnecting from it all for a while. Thanks for your concern. If anything really bad happens, everyone will know.

angiee26June 24, 2014 at 11:14 amReply

Hi April, don’t feel the need to respond. I understand. Just wanted to let you know that I’m still checking your page here and there and catching up on your blogs (I’m pretty new). Thinking of you guys. Angie

angiee26July 1, 2014 at 10:19 pmReply

Just wanted to send you a warm hug and greetings from Massachusetts.

April AprilJuly 2, 2014 at 2:21 amReply

Thank you.

snippy17kathyJuly 7, 2014 at 9:36 pmReply

April, I have just come across your blog and started to subscribe to it. I read your diagnosis blog and it really touched me. My hubby was diagnosed with ALS about 3 years ago; he had symptoms for about 6 months before we found out that he had ALS. We got the “I think you have ALS” speech from a local neurologist and we focused on the word ‘think’ & kept saying “we don’t have a diagnosis yet’. Then we also went to Emory for the ‘no way out, this is ALS’ diagnosis. Heartbreaking day, I know. My hubby and I are so very impressed with Dr. Glass at Emory. His interactions with ALS patients are filled with kindness and compassion. And he as well as the other doctors are so passionate and dedicated to beating back the ALS beast. If passion were all it took, there would be a cure.
My hubby is not one to share his feelings easily. Reading your blog is helping me understand a little bit more of what it might feel like to be him. Thank you for that. Please know that I am one more person out here in the world thinking of you and sending you good thoughts and prayers too if you don’t mind. I feel like those with ALS and the people who love them are all on this roller coaster ride with highs and lows and dips and times when your stomach falls to your knees. A scary ride for sure but sometimes the scenery is just so beautiful and sharp and clear. And I am trying to really pay attention. I think my hubby is having a harder time seeing the blessings right now.
Thank you for your honesty, your humor and your insights. Good to know you are out there.
Kathy

April AprilJuly 9, 2014 at 1:16 amReply

Hi Kathy,
Thank you for subscribing to my blog and I’m glad you relate and get something from it. I have different ways of handling some things than my husband also. Some good and some difficult results come from this. ALS is in a league of its own when it comes to dealing though. Quite the ride.
I’m a planner and ALS can be very hard to plan for at times. I try my best to roll with the punches. Some days I do that well, others not even close.
If you’ve read posts written from about November on, you know I’m in the stem cell study at Emory and I had positive results. I do constantly remind myself of this. My progression would certainly be further along right now otherwise.
It is amazing to me also how Dr. Glass is able to interact the way he does with his patients. You sense he cares. He’s seen so much that could easily turn a person in his position to one with a cold disposition. Not him. I’m very Glad to be at Emory.
Talking about ALS being a roller coaster, there will be days you and your husband are side by side riding together. Some days you’re on different rides altogether. Those days can be really tough and it’s good to find comfort in family and friends and new people who become a part of your life because of ALS.
My posts haven’t been as often as when I first began. I imagine this will happen at times. I plan on blogging until the end and that’s nowhere in sight right now.
I’m very sorry about your husband’s diagnosis. Always remember you’re not alone in this.
April

SminJuly 29, 2014 at 6:43 pmReply

Hi, April. It’s an honor to read your updates about your battle w/ ALS! Hope you’re having good days and I’ll stay positive for you on my end!

April AprilAugust 2, 2014 at 4:22 amReply

Thank you very much. It means a lot to read sincerely kind comments like this.

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