How to Get Onto the Cancelations List-TMI warning

Speak your thoughts out loud instead of just thinking it! That’s how to get on.

I am struggling scarily now. As predicted, the stricture (narrowing) has returned to my urethra. I spend so long trying to PUSH urine out that my feet both become numb and the pain when I have to get up and use them is horrendous. I almost cried out to my family to try rub some life into my feet earlier on today. It’s so bad, the struggle, how long it takes me to get just a few drops out, that the other night I suddenly heard my husband shout, “Are you dead?”

Even as I type, I’m on the loo, having fallen asleep twice while in here with a full bladder that I cannot empty. It’s scary. And that’s why I’m blogging, to keep myself awake.

So, earlier today, I phoned the urologist’s rooms to make an appointment. I was given February 19th. I said out loud, “Well, there we go! He told me not to “wait so long next tome “but HE is so busy that there’s no choice!” She then quickly asked if she should make a note to call me if anyone cancels. Yes please! And I hope it won’t be on the day I and Mr son go to the pulmonologist. In the same way I suspect he has AS, I am not very sure if his lungs. If mine are partially collapsed and get sick the most when we catch a virus, what if that’s why he is always the worst of the children? Why does his chest take the longest to heal? And what about his allergies? It’s time to find out exactly what he’s allergic to and get the perfect prescription for him. Currently he’s using Allergex tablets.., I was on them till the pulmonologist moved me to mometasone nasal spray. So who knows..?

In the meantime, I think back to the first time I got this stupid urethral stricture. To when my legs became so numb that I couldn’t feel my feet at all why I stood up and feared I’d fall. I truly couldn’t feel the floor. Stupid me thought my bladder prolapse had gotten worse. Haha. Wrong!

I feel like my body is conspiring against me. And my questions about the urethra is- WHY? What’s causing this? And what will the long term plan be? I can’t keep having procedures under anesthesia every two months. I had the surgery on November 15. Symptoms began in December.

And here I sit, scared. This will set my kidneys backwards. What if I end up totally unable to urinate before Feb 19’s appointment that will only set up a date for the actual procedure to help me? I’m terrified of self catheterisation.

All this, the pain, the struggles, the fatigue..to think (More disease, different disease..)it can get worse is horrifying.

Why? Why is my urethra being strangled? Tingling has begun in my feet and is traveling up to my ankle even though I stood up for a while. Undignified, this blog post. But so is disease-undignified.

And scary.

And each time I stand up, I get upset ‘cos that means the urine isn’t being forced down. I feel like when you’re giving birth and the baby’s head slips back upwards again. But more helpless. At least in labour there’s an eventually going to be a forceps or an emergency c- section. Here it’s me alone in the toilet at 23:24. No catheter in site.

I hope tomorrow will be better.

And no, no change in my finger. Tomorrow is the last day of the third antibiotic for it.

Fun times!

I’m giving up. I’m going to try sleep knowing I have urine in my bladder that I couldn’t get out. I have four more tablets given by the urologist post surgery to help flow of urine. Time to use them. Then what?

Sorry for the TMI. But I will not gloss over my suffering. And I can’t be the only one in the whole world going through this right now. Maybe they’ll find this piece and know they aren’t exaggerating.🤷🏽‍♀️

Faking Illness -Pee Mentioned

I’ve had some pretty weird people in my life. People who think that being sick is cool, and therefore lie and claim conditions I have. No offense, but if we’ve gotten to know each other and you only mention a problem AFTER I’ve told you I have it, I become pretty suspicious. One person told me they too had chronic iron deficiency anemia. She had also claimed to have IBS so my ‘suspicion-meter’ was already high when I asked her hope she was diagnosed with it. (I’d had anemia since childhood and dietary changes and oral supplements weren’t raising my iron levels. I needed iron infusions and transfusions.) She said she knew she was anemic because after she ate a handful of raisins, she felt better…Raisins have iron. Ergo, the fact that she felt less dizzy after having a handful of iron was proof.

That’s not how chronic iron deficiency anemia works.

On the other hand, I understate my problems. But also, I am so used to pain that something will only grab my attention if it’s extreme. Thats how I ignored the pain from the suturing needle the surgeon left inside me- my bone pain was worse and I figured it was pain from being cut multiple times. I thought I would just have to suck it up.

So there I was, feeling stupid for telling the GP that my urine stream is going in the wrong direction and I’m struggling to urinate. And then I felt guilty for being asked to produce a urine sample and taking ages to do so. I even apologised to the nurse who had been waiting to test it. I hate inconveniencing people…

I know I’m never wrong. I know that when I need surgery, I really do need it. I know that after my hand/wrist op, the surgeon told me things were worse than expected when they went in and I “really needed” the surgery. But still, I surprise myself – and my cousin who’s a nurse who is obviously more in tune with this kind of stuff so also found it as crazy as I did when I shared the photo.

This is the fluoroscopy of my urethra. That is the tube through which my urine had to pass. Maybe you’re also into medical things like my cousin and I. We are both kinda in shock. I DEFINITELY needed not only the polyp removed, but the dilation (making it wider.) NOW I see with my own eyes why I was struggling. Why I once posted that I fear I’ll not be able to use the loo and will have to go to hospital to be catheterised.

I wasn’t exaggerating. It was real. The struggle was real. *insert sad laugh at the bad pun *

I don’t know how this happens. I don’t know if there’s a trigger. I do know that the urologist said it’s very likely it will happen again.

I’m in awe. How did I ‘survive’ as long as I did before seeking help? No wonder it felt like I wasn’t emptying my bladder… I can’t have been. Those last few squeezes didn’t have enough force to pass through. I was in trouble. I really was.

And just like the wrist tendinitis, it was worse than expected.

I’m glad I can prove some of these things. I worry about being perceived as one of those liars. I don’t want to be someone whose veracity is doubted- I’ve had enough of that in real life by some doctors. I also don’t want to be seen as a hypochondriac, magnifying minor issues. I am thankful that I can prove that I am the person I claim to be. Honest. Real. Not complaining, but not holding the truth back.

Chronically yours – disease and weird conditions reporting operation after operation…That’s my life of pain.. and of triumph despite pain.