Tagged: interstitial cystitis

20/05/2020 Word of The Day – Frequency

I suffer from multiple invisible illnesses, I have shared this with you already, but the most bothersome for me is my interstitial cystitis or IC. It causes urination frequency and it tries to drive me crazy. I can be deep in thought, working on something that is taking all of my energy and bam, I have to stop and go urinate. I can’t get through the grocery store without having to go twice, unless I ride the scooter. It will save me one trip to the bathroom. The urgency can be bad too, but the frequency is what really gets me the most. So many times, so often, so many times, over and over again, I get so tired of going to the bathroom. My doctors don’t want to believe me when I tell them I sleep 1.5 hours at night and then I have to get up and go urinate, then I’m wide awake for a while, play on my tablet or check my email  and finally I can go back to sleep for another 1.5 hours of sleep. But I never get good restful sleep. My bladder will have me up running to the bathroom in no time.

It is a weird disease, not known cause, no known cure and so many suicides due to it and it’s pain. The pain can be as harsh as a stage four cancer patient’s pain. Luckily I have two sacral nerve implants that help with  my pain, one is supposed to help with my frequency and urgency, but I think it only helps with the urgency and forgot about the frequency. I’m lucky to have the pain relief though, I thank my lucky stars for it because I already have things going on that make me suicidal, I don’t need anything else.

And so…I try to think of the positive in it all. I’m happy I don’t have the pain that most people have when suffering with IC. I’m happy I don’t have the urgency and when I do start having the urgency, I go to the dr and he does a quick surgical procedure and it goes away. I usually have this done twice a year. It usually accompanies pain that I can’t adjust away with my implant remotes so we kill two birds with one stone. It is necessary to have the procedure to keep me healthy. The frequency, I’ll live with. Going to the bathroom 20 to 25 times a day is not that bad once you get used to it.

Have a great day today. Make it YOUR day and find a positive in all you do. I’ve been failing at finding positives lately, but I’m trying to keep my head up. Peace! ~ Tina

Change- Jan. 24, 2020 Word of the Day

Today’s word of the day is “change“. This is a good word for all of us in need of a little change in our lives. Especially those of us with chronic illnesses. We need to make a change for the betterment of our health. Stop smoking or stop eating so much fat or sugar. Try to change a routine that has a negative affect on our health, whether it be completely eliminate an activity that we do, or just a change in our attitude, we can make things better for ourselves if we are willing to change.

I know a lady with interstitial cystitis that is not willing to change in anyway. She thinks that the one dr she has always seen for her disease is the reigning king of IC and no other thing can possibly help her, she is unwilling to change anything in her routine or diet to make herself better. It is people like this, that are unwilling to try a change that really disappoint me. You never know what will work for you if you don’t try what has worked for someone else. It may or may not work for you, but trying it, within reason, isn’t going to kill you. I’m always talking about a positive outlook. How many of your have tried it? It helps! I can be doubled over in pain, but if I try to find a positive in my life at that moment, I can usually stand up better, maybe not all the way, but better. It’s the change in my attitude that makes the difference. I have so many times found that thinking about how much my husband is such a good support system for me and how much he knows what to do when I’m in such pain that just those few positive thoughts will help me get through the worse pain. And thinking about the fact that this particular pain will not last through out eternity. It will ease once the pain meds are administered. That too helps with the pain.

So just change your line of thinking and give it shot. Find a positive in your life. Your dog loves you, your cat purrs for you, your pain has been worse and you survived. The change you make today will help you tomorrow.

I opened an Etsy Shop

I took the plunge and opened an Etsy shop. Right now it only has downloadable forms. Mostly for medical information that one needs to carry with them at all times, or needs to take to the doctor each visit.

I love making forms, I used to do it when I was a typesetter at the local print shop here in town, but when I got sick, they would not allow me to work part time, so I had to quit, which ended up for the best because my interstitial cystitis got so bad that sitting up in a desk chair was near impossible for a very long time. I can now do it, but not for long intervals.

I’m asking everyone to please take a peak at my shop and see if there is anything you can use, but most importantly if there is anything else I can add to make it more enticing. Is there a form that YOU would like me to make? One that would help you when you go to the doctor’s office? Or one that would help you in any other way? I can make all sorts of forms. I love doing it and want to start this business off right and pleasing people is the first thing to a successful business.

Thanks for looking and offering advice! https://www.etsy.com/shop/TypeSettingStudio

~ Tina

My Theory About Stress & Invisible Illnesses

I have read through many blogs about people having chronic illnesses, fibromyalgia, multiple sclerosis and many other invisible illnesses. I have talked to people over the years of my time dealing with invisible illnesses and came to notice that most people with chronic pain, fibromyalgia, interstitial cystitis, and other illnesses, have had trauma in their lives before developing symptoms of these illnesses.

I have the theory that pure traumatic stress has caused our bodies to develop these illnesses or syndromes. And once one illness develops, the body becomes weakened, leading to more stress, leaving the body free to develop more illnesses which leads to even  more stress.

It wasn’t until after PTSD, that I developed any of my invisible illnesses. I had a migraine occasionally, but they were not an issue until after the traumatic event. I had never heard of interstitial cystitis or fibromyalgia until after the PTSD.

I wonder how many of you, have had trauma in your past, or have been so overly stressed for a long period of time that your body weakened and chronic illness developed.

Please leave a comment if you think this theory holds any merit.

Poetry

I’ve been fighting illnesses for a long time and writing poetry about them helped at one point. Unfortunately, I take a lot of medications now that squelch my creative abilities. Below are two that I wrote years ago when I first started having serious illness issues.

Tina Brown
November 22, 2002

Wake! I command you,
Rest no more.
I thrive on weakness,
Your pleading I adore.

There is no refuge,
For you from my wrath.
I’m the dictator,
Of this unchosen path.

Seek as you wish,
None will you find,
With strength or stamina,
Greater than mine.

No pill, no potion,
No bottle, no vile,
Can destroy my presence,
Only weaken a while.

But I’ll soon return,
You’ll answer to me,
For I am your master,
Forever to be.

_______________________

Mind Game
by Tina Brown 1999

So you’ve chosen this game to play,
Obviously unknowing of my abilities.
You’re unfamiliar with this territory,
Are you frightened?
You should be.
Deception is not for the weak,
Bad dreams are made of me.
I can hurt you and never lift a finger,
I can control you secretly.
I possess you as you once did me,
My wisdom is more than your strength,
My endurance will astound you,
No mercy will you reap.
Are you ready to begin?