Jump to content

Trying not to feel discouraged!


limichelle

Recommended Posts

I honestly didn’t know if this belonged in the Health forum or the emotions forum.

 

After a very disappointing surgery that just resulted in unnecessary pain. I’ve been feeling less hope that I can get my health issues sorted out. I see a new doctor tomorrow, however in the back of my mind I keep thinking it’s another run around.

 

I’m trying to be hopeful and not angry or bitter. I’m trying to preserve some sanity and clarity.

 

My birthday is on July 7th and I’ll be 38. It’s another year of not being closer to where I want to be in terms of personal goals. It’s another year of health issues. I start out the year on each birthday with a plan in mind and it’s a good plan, loose weight, reclaim my health...

 

Then it gets muddied along the way. I’m still persevering and I’m lucky for the constant emotional support I get at home and from my boyfriend. I’m very blessed in that retrospect.

 

I guess tonight I feel sad and like a failure.

 

Thank you for letting me rant.

Link to comment

I'm so sorry you're having such a rough time. I can't imagine how awful, scary and frustrating it must be for you. It must be so hard to stay strong when you never get any answers. I hope and pray seeing a new doctor will finally lead to light at the end of the tunnel. ((cyber hugs))

Link to comment

Been there, have the t-shirt. You should in NO WAY feel like a failure, you are doing what you need to do for a solution and therefore, you are succeeding. Sooner or later, especially if you go to different sources, you will find a way out of this. It is completely unrealistic to expect to reach all your physical and life goals when you have a major health problem, it simply cannot happen. I know we live in a day and age when people practically act like if you have an issue it is because of a character disorder (or you simply aren't trying hard enough to be healthy). That is not the case and don't let that affect you negatively. Keep fighting, you will eventually find a solution and can work from there. And by the way, it may take a while to recover from whatever the solution is, and that is also FINE. This notion that we are all supposed to bounce back immediately is very damaging.

 

You are doing the right thing, you have nothing to feel like a failure about. Nothing.

Link to comment

Oh, honey. My heart goes out to you. I share your birthday, sister. ((HUG))

 

I'm a lot older than you, and much closer to a recognition that our calendar is arbitrary and doesn't cooperate with our plans. So toss it, and focus instead on one step at a time. Liberate yourself from deadlines, especially in this pandemic time of 'pause'.

 

Was this the surgery to remove a bladder mass? How was it unsuccessful, or is more time required to really know?

 

You continue to be in my thoughts and wishes for peace and recovery.

Love,

Cat

Link to comment

What was the result of your surgery?

It was only 8 days ago. Could that surgeon not remove the mass?

Or what was the outcome?

 

Have you been referred by that surgeon to the Dr you are seeing tomorrow or is it you seeking a second opinion?

 

Sometimes surgery while not giving you the desired outcome , still gives physicians a clearer picture of what’s going on and therefore the pain is perhaps a necessary evil?

Link to comment

Thank you all for the posts!

 

The surgeon couldn’t get to the mass. She basically told me before the surgery that she knew exactly where it was and would remove it. I woke up finding out she wasn’t able to get it. The mass is at the bottom of the bladder near the right ureter.

 

I’m not upset that she couldn’t reach it as it is now out of her realm. I’m disappointed that now there’s nothing more so I’m being shifted onto the next doctor. A Urologist Oncologist.

 

I just pray today he tells me that he can help me.

 

This allusive mass has been confusing different doctors.

 

I’m grateful the exact location has been pinpointed of where the mass actually is.

 

Thank you those for the advice as to not feel I’m set back for another birthday. I really appreciate that and you’re right! I just needed to read that and be assured there shouldn’t be timelines or deadlines.

 

Billie I think this pain is a necessary evil now that you mention it. As disappointed as I am the surgery didn’t go the way planned and that I’m in pain and allergic to the incisions. I realize now the exact location of the mass is pin pointed. That’s a step ahead of where I was back in November.

 

Virtual Hugs back to all of you!

Link to comment

Do some of your own research, because knowledge is power. The more you know, the better the questions to ask. From my experience not all doctors are the same...some are quacks. Check out this new one...there will be ratings and a bio available on line about them. This might give you a chance to research other doctors and options too. Nothing wrong with getting a second, third or fourth opinion. Also what helps, is keeping a positive attitude. Don't let this disappointment set you back, but motivate your to focus harder on getting better. I wish you a Happy Birthday, and hope you are surrounded with love and laughter. Birthday cake and ice cream is a pretty good distraction :)

Link to comment
Thank you all for the posts!

 

Billie I think this pain is a necessary evil now that you mention it. As disappointed as I am the surgery didn’t go the way planned and that I’m in pain and allergic to the incisions. I realize now the exact location of the mass is pin pointed. That’s a step ahead of where I was back in November!

 

So basically you have received good news!

The surgery served a good purpose. Sometimes exploratory surgery is necessary because CT scans, X-rays, MRI’s are only indicative of what may or may not be happening.

 

Before scans etc you would have had numerous surgeries by now just to find out what’s going on.

At least they were able to pinpoint where to look with this past surgical procedure.

 

You must feel somewhat grateful for that!?

 

I don’t think you are being unnecessarily passed on from one Dr to the next. You are simply being referred to more specialised Doctors based on increased findings and knowledge which can only have been discovered based on procedures so far.

 

If you feel uninformed or don’t understand you can ALWAYS ask for clarity.

 

I think you are being treated appropriately medically.

Link to comment

Hi everyone,

 

An update! I saw the Urologist and he is taking a more conservative approach which is good. He is doing an in office cystoscope just to look at the mass and see what the next step is. He’s not just jumping into surgery. He’s not doing the cystoscope until my body has calmed down. So not until a month from now.

 

I ended up in the Emergency room. My incisions have a staph infection. So I’m on an antibiotic.

 

I feel more hopeful about the outcome of this.

Link to comment
So basically you have received good news!

The surgery served a good purpose. Sometimes exploratory surgery is necessary because CT scans, X-rays, MRI’s are only indicative of what may or may not be happening.

 

Before scans etc you would have had numerous surgeries by now just to find out what’s going on.

At least they were able to pinpoint where to look with this past surgical procedure.

 

You must feel somewhat grateful for that!?

 

I don’t think you are being unnecessarily passed on from one Dr to the next. You are simply being referred to more specialised Doctors based on increased findings and knowledge which can only have been discovered based on procedures so far.

 

If you feel uninformed or don’t understand you can ALWAYS ask for clarity.

 

I think you are being treated appropriately medically.

 

What does allergic to incisions mean? Btw? I’ve never heard of that . Does that mean if you cut your finger with a knife you get an allergic reaction? Lol I’m guessing you were being funny 😂

 

 

Thank you for the reassurance.

 

I was realizing after reading what you wrote I needed to be more patient. I was thinking eight months of back and forth was too long.

 

As for the incisions, I was referring too having an allergic reaction to the glue she used. It turned out to be a staph infection.

Link to comment

Hi Rose!

 

I’m at home now. I feel miserable with the staph infection in my incisions. I’m looking forward to the antibiotic clearing it up.

 

I’m seeing a Urologist oncologist June 24th. There was a mix up at the office. The doctor I saw yesterday decided my case was too complex. I’m happy he had the integrity to know that.

Link to comment

You are such a trooper. I really admire you. Keep up your spirits somehow, sleep as much as you can. I hope you have something for the pain.

 

That's good that the doctor decided to forego your case if he doesn't feel confident handling it but I hope that oncologist can explore some answers with you.

Link to comment

What antibiotic are you on for staph? Have they followed up with the lab to check if the antiobiotic is an appropriate one and determined if MRSA or not?

 

Infection makes more sense than an allergic reaction 😀

Never assume.

As important as it is for you to feel well informed , it’s just as important for you to inform your Dr of any symptoms.

Link to comment
What antibiotic are you on for staph? Have they followed up with the lab to check if the antiobiotic is an appropriate one and determined if MRSA or not?

 

Infection makes more sense than an allergic reaction 😀

Never assume.

As important as it is for you to feel well informed , it’s just as important for you to inform your Dr of any symptoms.

 

 

Yeah I think at the time I meant infection but put allergic 😂

 

I am allergic to almost every Oral antibiotic. There’s a select few I can take orally but the rest are given in Ivy. I’m taking doxycycline that’s one I’m not allergic too.

 

I’m not sure if it’s MRSA the ER physician didn’t check with a swab but he did say it looked like a staph infection.

 

I’ve been told doxycycline is good for skin infections. I’m hoping it’s the right antibiotic.

 

I see the Surgeon Thursday For my post op appointment and will see what she thinks.

Link to comment
Yeah I think at the time I meant infection but put allergic 😂

 

I am allergic to almost every Oral antibiotic. There’s a select few I can take orally but the rest are given in Ivy. I’m taking doxycycline that’s one I’m not allergic too.

 

I’m not sure if it’s MRSA the ER physician didn’t check with a swab but he did say it looked like a staph infection.

 

I’ve been told doxycycline is good for skin infections. I’m hoping it’s the right antibiotic.

 

I see the Surgeon Thursday For my post op appointment and will see what she thinks.

 

Doxycycline will treat it although it’s a poor choice of antibiotic in your case.

More Appropriate action would be clindamycin in your case which is from the same family of antibiotics so you wouldn’t be allergic and also doxy can make you feel quite ill. And some nasty side effects if not taken as directed.

 

Make sure that when you take it that you remain upright for at least 30 minutes after taking it. Do Not lie down at all!

 

The Dr should have collected a swab and followed up on the results.

 

Hopefully it is working for you. By now you should see some improvement if it’s working?

Link to comment

Sorry I didn’t respond with an update right away. I saw the surgeon and got more clarity about the procedure and she did apologize. She apologized for the surgery not going according to plan.

 

She thought it was a fibroid but when she saw for herself it’s a tumor she knew it was beyond her expertise.

 

The doxycycline worked and cleared up my incisions. Now I’m on an antibiotic for a uti.

 

It didn’t help when she said the tumor was the strangest thing she had seen in all of her years doing surgery.

 

I see the Urologist Oncologist this Wednesday. Hopefully he can be the final piece of the puzzle.

 

Im feeling uncertainty about what this mass could be. I was advised if it’s not malignant leave it be. If it is malignant I’m in for more surgery.

 

I just pray it’s benign so I can put all of this behind me!

Link to comment
I see the Urologist Oncologist this Wednesday. Hopefully he can be the final piece of the puzzle.

 

[...] I was advised if it’s not malignant leave it be. If it is malignant I’m in for more surgery.

 

I'd avoid adopting assumptions from any doc who hasn't been able to help you so far. I'd put all questions on the table to the Urologist Oncologist, given that this is her/his area of expertise.

 

Don't allow the limitations of someone's experience to dictate your potential outcomes.

 

Open mind, open heart, and lots of love, honey.

Link to comment

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...