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
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.
Infuse, reprieve, survive – Daily Prompts
It has been nearly a week since I had my cystoscopy with hydrodistention. I was so concerned about going under, so afraid I would not survive this time. But as the time drew nearer, I had a reprieve in my thought pattern and realized I would feel much better after the surgery. After they infuse the bladder with the numbing medication, one would think you would wake up with no pain at all, but that is not the case, you are in extreme pain. Your bladder has just been reset, so to speak. It has been stretched beyond its limits and scar tissue has been broken apart. It has been taken out of it’s constricted state and reset to its normal state, whatever that might be for an IC patient.
I do not regret having the cysto/hydro, but I wish it had been closer to the date of my interstim replacement. The doctor had me scheduled for the 8th, but has bumped it to the 15th. He has to go out of town on the 8th. I will survive until then. I have my IC diet to keep my bladder calm until then. I have my IC diet to keep my bladder calm afterwards as well.
It is imperative that I maintain a bland diet to keep the flares away. I showed you what my bladder looked like in my last post. It was horrible, but maybe you did not get that all the blood vessels and blotches of blood were not supposed to be there because you did not see a normal bladder to compare it to. A normal bladder is smooth and does not have enlarged blood vessels or bloody blotches. While the IC bladder is riddled with bloody spots and enlarged veins and blood vessels. I will include pictures of both in this post.
I’m looking forward to the 15th, I will have a new interstim that should last at least 4 years, maybe 5 if I can run it a lower wattage. I really consider these things to be a miracle in the IC world, though some do not agree with me. For me, they have been a miracle.
Today I had a cystoscopy (a camera in my bladder) with hydrodistention (my bladder filled to capacity with medication) to help reset my bladder from being in a constricted state. The procedures always go together and are an actual surgery. I’ve had many of these done and they help with pain, frequency and urgency once the bladder settles down from the procedure.
I am in quite a bit of pain at this point in the day, the medications have worn off from the hospital and I’m back on my normal pain pills that are mild in comparison.
I write because I want people to see what an unhealthy bladder looks like. My doctor provided me with pictures of the inside of my bladder. All I can say is, no wonder I’m in pain!
Today was a bit trying, I was already nervous about being put under again so soon but almost instantly when they nurse started the antibiotic IV, my arm started turning red with an allergic reaction. It continued from the IV site to about 6 inches up my arm and around my arm, they stopped the antibiotic, gave me Benadryl and put ice on my arm until the redness subsided. Then they started it again and did the procedure.
When I woke up my arm was again wrapped in ice and whelped up worse than before. The nurse told me she could not believe they kept giving me the medication and she threw it in the trash and told me to write it on my allergy list. I had to stay in the hospital long enough for my arm to clear up, then I was allowed to leave, but there are still whelps on my arm, just not redness.
So when you look at this picture, notice the lighter spots, those are the color of a healthy bladder. A healthy bladder does not have any blood lines showing or blotches.
With no known cause or cure, it is very frustrating and painful to deal with this disease.
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.
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.
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?