Am I headed into a relapse?
Posted on March 30, 2008 by yemmas
Photography ©Ammey Kohen
Please read with compassion. Talking about issues with my bladder is a delicate subject (to me at least). I am expressing my inner most thoughts and feelings on a blog for some strange reason I have yet to figure out. I don’t even think anyone will be reading this but I still feel guarded about wearing my heart on my sleeve as I try to sort out how to handle my very recent symptoms of a relapse.
After waking up 2 mornings in a row with problems peeing, I am beginning to feel an ominous sense that I am showing signs of a relapse. I have had ongoing problems with my bladder, in sporadic flare ups. It has never gotten to the point where I would actually consider the 5 day IV Solumedrol treatment for it. I have never called my Neurologist about my bladder flare ups before because I did not want to face the possibility to need IV steroids again. I hate the treatments, to be honest.
Imagine…you wake up in the morning; you can feel that your bladder is painfully full, so…you race to the bathroom in your wobbling sort of way, only to realize you can’t pee. The only pee that is comming from your bladder is in a slight trickle like a kitchen faucet that has not quite been turned off all the way.
Yesterday I convinced myself that it was a fluke, so I made a deal with myself that I would call the Neurologist if and only if it happened again. Well, of course it happened again this morning. Now I want to go back on my own deal.
I am dreading calling my Neurologist. I really do not want to do the IV treatments and ensuing tapered doses of Prednisone. I feel like a kid who has to go to the dentist…kicking and screaming. I mean, I REALLY do not want to go through another round of Corticosteroids! I get acne, I get the moon face, and I get Diabetes (which requires insulin shots). How fun is it to shoot insulin with your Diabetic son? Not fun at all. Plus, I have already had a difficult time losing the 20 pounds I gained from the last 5 IV teatments because my mobility is so limited. There is not one day that I am not totally considering starving myself to lose the weight. I resist most of the time but skip meal son bad days. As I type, I am realizing that I have some issues with eating that I have yet to conquer.
So, what will I do on Monday? I do not want to do the Solumedrol. I know it’s my choice in the end, and I also know it is not a guarantee of recovery from a relapse. The symptoms I am having are not just a small relapse of strange symptoms I can live with. It is painful to have a full bladder that won’t empty quicly enough. But I just don’t know and feel I am at war with my conscience and my body. Why does my body do these things?
I can hear my MS at work…“First, I will make her nose and chin tingle; then I will completely throw her off her rocker when I won’t let her pee! Just when she has had enough, I will make her leg contort in a painful spasm! Bwahahhhhahah!”
If MS were a person doing this to me and my family, the evil torturist would come out in me. Because it is an unpredictable disease, I feel powerless over my life when I have a relapse. I feel like a 5 year old who has just been told they have to go to bed when they just started playing and having fun. In my mind, I am screaming, “But…but…but…just one more minute to play!”
I am tired of being in a constant state of rehabilitation. Whenever I have improvements, the other proverbial shoe falls. I feel like I cannot catch up. I am not depressed (yet) but knowing I face a round of Solumedrol and Prednisone has left me feeling defeated today and it is only 11am.
I am going to try to cope with my heavy heart by doing what I do best lately. Cooking delicious and healthy new recipes for my family. I found a vegan recipe on Tofu & Broccoli Quiche that looks to die for. I am going to attempt to make pie crust from rice flour so it wil be gluten free as well. If it comes out good, I will take some photographs and share the recipe on my blog.
If anyone has actually read this I both appologize for the low energy and thank you for being a cyber ear. Hopefully it will let someone else know they are not alone.
eTherapy anyone?
Filed under: Medication, feelings, food, grief, health, multiple sclerosis, photography | Tagged: bladder dysfunction, gluten free, IV Treatments, ms, multiple sclerosis, Prednisone, quiche, Relapse, Spasticity, vegan
Ammey,
I hear you regarding the IV steroids. I HATE them too, with a passion. So much so that I avoided admission of my recent relapse for a little too long. But admittedly, that worked like a charm. I also can’t take the prednisone as it doesn’t agree with my body. So I use a Decadron taper instead which has proven to be MUCH EASIER on the body and the psychie.
I don’t have experience with bladder retention, only bladder leakage. Thinking about it logically, there’s a sphincter muscle which controls the release of urine. I don’t know if bending forward would trigger that muscle to release or if manual stimulation on the outside would trigger a response. Those would be my first thoughts to try.
Or you could contact John-Mark who is a blogger who just recently went through the process to learn how to self-cath. He posted about it here http://sanchoknotwise.blogspot.com/2008/03/to-pee-or-not-to-pee.html Maybe he would have some thoughts.
I sincerely hope that things work out for you soon.
Thanks Lisa for the tips. If I end up getting the treatment, I will duscuss Decadron with my Doc. The last time I was on Prednisone, I got Gastritis and had to be admitted to the hospital because I could not stop throwing up.
I am glad to hear there is a second option to Prednisone, thanks for taking the time to tell me about it.
Hope you are feeling better since your last relapse!
Ammey
Though I can’t know 100% what it feels like to have MS, I do understand your frustration. I’m so sorry you have to take those nasty medications and suffer like that. My mom has IC, which gives her that same strange urgency/frequency when it comes to using the restroom. I’ve seen how frustrated she gets with it, since her sleep and life get disrupted by it too…and it’s also frustrating because not many people understand these various ailments that even doctors can’t fully grasp.
I’ve had asthma since childhood, then I was diagnosed with IBS later on in life; I hate prednisone too. I will avoid steroids so long as I can still get some air into my lungs without having an attack :0/. But you know, I think it’s great that you blog about your feelings, it’s actually kind of comforting to discover a sincere person behind a blog post. I also think you should keep on cookin’, I’ve discovered it’s the best therapy next to prayer. It’s a little silly, but even when I have abdominal cramps and the runs (blah!), you’ll still find me in the kitchen baking/cooking something for my husband! It’s the best therapy! Hope you’re feeling better, and keep on blogging away those feelings! Even though it gets frustrating, always remember you’re not alone. I’ll be reading and sending a few prayers your way!
God bless,
Sophie
ammey,
i just found your blog searching for things about “what to do when you think you’re having a relapse” or…for me it’s more like “what to do when you know you’re having a relapse but you don’t want to admit it.” sigh. i super hate the Solumedrol. mainly i hate the IV part. and i hate that you have to keep it in for 5 days. i stay at home with my one-year-old twins. try keeping an IV away from them. i did try the powder form of Solumedrol last time. it tastes wretched. and i don’t think it worked as well. sigh. the prednisone gets me so amped up i can’t sleep. sigh. my “symptom” is numbness in my face. but enough about me. i feel for you with the bladder. wishing you well…
Thanks Betty & Sophie…here is hoping you and I both (and all the other) Solumedrol/Prednisone haters can avoid them whenever possible!
no avoiding it. it’s a relapse. numb tongue. i did the disgusting powder solumedrol mixed in an icee for three days. and my tongue is still numb. and i haven’t slept in a week even though i. am. tired. all. the. time. oh well.
so sorry betty. I know it is a handful with 2 small ones to look after too. i think that continues to be the toughest part to manage, how to get rest when your amped up on solumedrol and have 2 babies counting on you too.