The Score: Side effects - 99 Kelli - 0 I have been taking acetazolamide (DIAMOX) since mid-November, and I am not willing to sugar-coat how I feel. It has made my life truly miserable. I cannot begin to express how difficult the side effects have been in spite of titration. I have tried so hard to tolerate it, but I am losing the battle. My side effects include: lethargy, drowsiness (but no restful sleep whatsoever), nausea, dizziness, loss of balance, paresthesias, tinnitus, hearing dysfunction, alteration of taste (dysgeusia), generalized and localized pain (head, bones, muscles, nerves, kidney, urinary tract), kidney stones (I'm on potassium citrate for prevention), hypersensitivity of all things sensory in nature (light, sound, touch, even emotional triggers), occasional delirium due to sleeplessness, and more. Some of these things are new, while others were an issue before the treatment but have been noticeably heightened by the drug. The problem with getting off of it is that my paralytic episodes will increase again. I proved this by quitting it for several days. I quickly found myself back in a near-constant attack of paralysis, especially in my upper body, as I often was before starting the treatment. I got back on it, and the paralysis lessened again. I still have random episodes, but not like before the acetazolamide. It's hard to explain...all I can say is take my word for it. The lessened paralysis is the only reason I am still taking the drug. It is too important to ignore, and I still hope for a solution to this madness. Having to choose which misery to live with is a difficult place to be. I will meet with the doc who prescribed it sometime in April to discuss, but he has not returned my phone calls so I am on my own until I meet with him face to face. I'm aware that he doesn't know what to say or do at this point, but we will discuss any further options and I will ultimately, hopefully make the right decision. My birthday is tomorrow. I am not able to spend much time out of bed, but I'm going to try to drive to the Island for gumbo and a show...the rolling walker in tow. Instead of being in the prime of life, I'm fighting for whatever life I can get. I don't know what to say to that because I still can't believe this is my reality. Nevertheless, I will keep fighting. I appreciate those who are on the front lines with me, as well as all who have offered your thoughts and prayers.
I've been going through a hard time with systemic disease and all the pain and drama that comes with it.
A really hard time.
Lately I've been a bit snarky, depressed, and just flat out sick and tired of being sick and tired.
I guess you could say I've needed some cheering up.
So, I decided to give myself some flowers.
"Vase of Wildflowers"
Ink on 9 x 12 Canson Acrylic Paper
The cool thing about a Tangle is that it has a mind of its own. There is no plan. There is no explanation. It develops its own strange and wonderful personality. No one can argue with it, because it simply is what it is, and offers no apologies.
Our darling sweet cheeks is home where she belongs!
She's on a monitor. She will have to wear it until they know for sure she's out of the danger zone. Zoey is doing very well otherwise...already growing like a weed, and so alert (when she's not snoozing). I am incredibly relieved for John and Kayla. It was such a stressful few weeks.
I hate living two states away. I miss my baby doll. I felt the same way about Jo when I had to leave her after she was born.
Zoey was diagnosed with Periodic Breathing, which amounts to borderline Sleep Apnea. She is on a titration of caffeine citrate, which stimulates the brain and has been proven effective in training newborns to take regular breaths. She will hopefully grow out of the condition as her brain and body continues to develop. Until then, she will be on a sleep monitor at home.
It broke my heart to leave. I wanted to see my brother and sister in law take her home where she belongs, but I am so incredibly thankful that she will be okay. She should be released from NICU in the next few days if treatment goes according to plan. It has been a very long, stressful two weeks for my family. We greatly appreciate everyone's prayers and well-wishes for our sweet Zoey girl.
In other niece news...
...it's Layton Josephine's birthday!!! I can't believe she's two years old. She is such a funny, adorable girl with a huge personality. Jo loves to dance to anything that resembles music...doesn't matter what it is. We can turn on a TV commercial or randomly hum a tune and she busts a move...hilarious! Love her!
I finally made my way home to Alabama on Saturday, but my heart is still very much in Louisiana. I hate being so far away from my nieces. Traveling is difficult and sometimes impossible, so I don't see my out-of-town family often. My muscles are not in good shape at the moment and sometimes I think I'm going to lose my mind over the pain, but I wouldn't trade this trip for anything. I am very grateful that I could meet Zoey, see Jo, and be there for John and Kayla during this roller coaster of a time. Walker in tow, I managed to buy groceries and cook several meals for the family. I did veggie beef soup, bacon mac n cheese, loaded baked potato soup, a taco/burrito bar, and burgers. Everything turned out well, and I was so relieved. Ha.
I'll try to catch up on blogging this week. I have a lot to talk about concerning goals, health, moving out, travel plans to Georgia and Florida, shows I'm watching online, and perhaps I'll give you some insight into my boring life by sharing a bunch of random pics too.