Help wanted (Score so far related)

[Jersey Girl]

Oh and you know what? When I was deliberating about whether to wake up The Boy and go to be seen, I prayed for clarity. I decided to go in. But now that I'm thinking about it as I write...I think I got a second form of clarity with the imaging, too. Thank you to the Lord who sees me, hears me, and I think feels me too!

[Jersey Girl]

Back for a little check in. I never meant the thread to go dead. Some of us took it off the board and mostly I got sick and tired of writing about all the ins and outs of this so-called health journey of sorts. It's been bad enough living it.

I'm writing because I got royally ticked off about something and as I've said before, anger is the fuel that pushes me forward.

But first...

Score so far.

I had some more testing done. Prefacing everything below with a reminder that I have been diagnosed with legit PTSD from all this mess and that is the reason I'll mention anxiety below. The PTSD doesn't intrude on my life unless it's a test or some new symptom arises. Also, this was the FIRST TIME EVER that I didn't look at the test results in the portal. I'd just had enough stress so no thank you to seeing test results, looking up stuff I don't understand and/or driving myself entirely insane. I was already there. I didn't need another shove off the deep end.

Cardiology Testing:

Echocardiogram

It's been a good 8 years or so since I had one so when the Cardio suggested it I jumped at the chance. I had high levels of anxiety during the test (just short of panic attack) but the tech was good to chatter with me. When I told him I'd been praying for accurate results, he actually thanked me! Only took about 30 minutes all total.

Results:

"I have good news! Your heart muscle is GOOD. There's nothing wrong with your heart. It's only the Afib." "Did you see any blockages?" "No. No blockages." "Did you notice any progression in the mitral valve regurgitation that was on the first Echo I had?" "No, it's only minor. Nothing to worry about."

I was SO happy!!!

Conclusion: We'd been talking about a new method of ablation. It's really cool! But at the follow up I discussed how when you ablate sinus nodes, the heart remodels itself and grows new nodes...and...since my Afib is caused by digestion I didn't think it would matter if I had the new ablation because my gastro stuff would just tick off some other sinus nodes via my vagus nerve. He said that was a good point! So...we agreed to table the idea and let me keep at resolving the gastro issues.



Kidney Testing:

This was a result of a new diagnosis via urgent referral I mentioned earlier in the thread and didn't want to discuss publicly. I still don't want to discuss it publicly. What we were looking at was kidney damage.

CT Scan

I about died trying to get there on time and was late. They still took me in. Anxiety off the charts again. This tech was also very good to talk to me during the procedure. I settled down and it went fast.

Nuclear Medicine Renal Study

This was the big guns to get in there and check kidney function. Had to be done at a central hospital downtown that has the only imaging machine for it. Turned out that I didn't need to really drink the 16 oz of water beforehand as instructed. The tech was SO good and informative. Her name was Ariel and yes, I sang a few bars of Little Mermaid to her...she loved it. She explained everything little thing in advance. What the machine sounds like, what I would feel (nothing), how she would inject me with the tracker, and how at the half way point she would inject me with a diuretic (Lasik?), why she needed to do that, what she was looking for, and what it might feel like to me. She narrated the whole test and it went exactly as she had described.

We'd started chatting during the test. She has a 2 year old so I whipped out child development information/wisdom for her and...also turns out her parents just moved to our little town out in the sticks here! We chatted long after the test and she stepped out to tell The Boy "She'll be out soon...we're talking." So funny!

Results:

Urologist said everything looked GOOD! He showed me the test results and explained the graphing involved in the test. He is SO good at teaching! My right kidney (the one in question) simply empties just slightly slower than the left. He thinks it's because my kidney was swollen for a long time and it's not as elastic (?) resilient (?) as the other because it got stretched out but no problem, the slower emptying is so slight it doesn't matter and barely worth mentioning. What matters is that it empties good and proper. He also said they don't see that in practice but that it could also be an abnormality in my anatomy to which I said, "I've never been normal in my life. I require far less of a medication to produce effect. It's a case of one size fits all but not me, which I am sure you can relate to." I said that because he's got to be 6'8" and I'm the opposite end of height spectrum.

Conclusion: He's done with me. I don't need to see him again unless something goes weird again with my kidney. He advised to keep a watch on routine kidney labs because that is where they see the first signs of problems. And all my labs are stellar. Just mentioning that for general interest in case someone around here needs to know it.

I know these are lengthy descriptions but it helps me to journal and someone else might remember a helpful detail if something unexpected crops up in life. Which is exactly what happened to me.

So about the anger...

Gastro cancelled a follow up appointment at the last minute. Yes, I know providers have lives and stuff happens. I had an important question for her and now it's going to be delayed so...heck with it! I'm self treating because I'm not going to wait. The only thing I haven't tried is digestive enzymes. I've got 2 bottles of prescription strength enzymes (2 different strengths of Creon) which I totally forgot that I had so when they cancelled my appointment I went on Amazon and ordered a lesser strength of the same enzymes by Physician's Choice (good brand so far as I know) and they'll be here Friday. Going to start with those, see how it goes, then work my way up the chain to the highest RX strength of Creon. Not asking for guidance from anyone. I've been virtually self treating this whole entire time anyway, intuitively feeling my way through various things, already conquered the issue I kept private which I'll just say was a severe kidney blockage at the UPJ, no recurrences of Afib/RVR for 3 months, and now I'm on to a new digestive frontier.

Starting Friday. See how it goes. The worst that can happen is my gut blows up, I go into Afib/RVR, get trapped in the ER for 5 hours and somewhere in that 5 hours of entrapment...I get propofol. Not seeing a downside.

82 lbs. I don't weigh myself but once every 2 weeks if even that. I don't even care how much I weigh any more. My main job is battling symptoms. If I can do that, the weight will follow.

Friends...my friends. You know exactly who you are. The ones who have kept up with me for all this time on and off the board. Who know the details and offer compassionate support. My cheer leaders. I don't see how I deserve you but I am blessed by your care and concern for me! Hardly anyone in real life knows I'm even sick. Only my immediate family, one relative back East, some of my artist friends, and a couple of lady friends here on the ground. If you could see my Facebook you wouldn't see any indication at all that I've been sick though you might notice there are no recent photos of me there now. You would think everything was hunky dory, that she's just crafting away right now, but there are people who know differently and some of them are you. I appreciate you so much that words fail me.

I also want to say this as discreetly as possible. There have always been folks on this board who contact me privately (and likely reach out to you as well) with there own concerns, wanting to talk things out, you know. Kind of like this thread, where you just want someone else on the planet to know what you're going through and how hard it is. I just want whoever might be reading here to know that there have been and still are people in need on this board, people who are struggling themselves or have a loved one who is struggling. You know that saying that essentially says "Be kind. Someone might be fighting a battle you know nothing about"?

They are.

People in my life, posters themselves, people in their lives as well. I would just like to ask that if you are someone who prays, that you remember to include people who are struggling and fighting battles. The Lord knows who they are and what their needs are. Folks, they are all around you. Here and on the ground. I have a relative back in Jersey who is worried about another relative. The person in question is on a collision course and looks like about to lose their home, their freedom, and their health. See what I mean? It's a situation where no one is going to step in, not even me this time. Well, there are times when it's wiser not to step in and we can't stop a runaway train but I think we can lift them up in prayer.

So consider it please, if you are willing to send up a blanket prayer for those who are suffering and struggling, knowing you guys you probably already do this. Or even send positive vibes whatever is your preference. I think it all counts for something. It certainly has for me!

I love you guys,
Jersey
<3

p.s. I think I'll fire up that crafty/DIY thread and post some pics of what I'm working on lately. It's all self care and therapy...maybe involve sales we'll just see how that goes.

[canpakes]

Jersey Girl, your examination results for the heart and kidneys sound great! I’m very happy to hear this recap.

I don’t know if I’m more impressed or sad that in real life folks haven’t questioned (or let on to noticing) any issues with you at a weight of 82 lbs. That sounds incredibly light even for the height I’m guessing you to be. That seems so much lower than I ever remember you reporting, but I’m also not an OG member of past boards that you used to inhabit as some others here are, so I’m more ignorant of your history than most.

I hope that you’re finding time to be outside in nature, and letting that mitigate some of the stress. Raking the forest floor is a good way to burn off some adrenaline, I hear.

But, seriously - stay well and keep us posted on developments.
: )

[Doctor CamNC4Me]

I wish you’d put some weight back on your bones, Jersey Girl.

- Doc

[Jersey Girl]

I wish you’d put some weight back on your bones, Jersey Girl.

- Doc

Aye, there's the rub.

You wish I would.
And I wish I could.

[Jersey Girl]

Jersey Girl, your examination results for the heart and kidneys sound great! I’m very happy to hear this recap.

Thanks! I really wanted that Echo. The Kidney testing was an absolute necessity.

I don’t know if I’m more impressed or sad that in real life folks haven’t questioned (or let on to noticing) any issues with you at a weight of 82 lbs. That sounds incredibly light even for the height I’m guessing you to be. That seems so much lower than I ever remember you reporting, but I’m also not an OG member of past boards that you used to inhabit as some others here are, so I’m more ignorant of your history than most.

Easy explanation. No one sees me but the folks I mentioned. Many of my lady friends who are on my Facebook are retired like I am. We bump into each other from time to time and talk at length when we do, but really don't get together. They're kind of like me. Introverted, retired professionals, happy to retreat into our own worlds and we'll only come out when we're good and darn ready to. There's a meme that has an old guy sitting on a porch rocker and it says, "A good day is a day when I don't see or hear another human being." That's totally me and my long time friends! If one of us put out a call for help, any of us would be there in a heartbeat. My artist friends see me regularly. Re: height. Think competitive gymnast and you're there! by the way, the one and only sport I was ever super good at in school was gymnastics.

I hope that you’re finding time to be outside in nature, and letting that mitigate some of the stress. Raking the forest floor is a good way to burn off some adrenaline, I hear.

But, seriously - stay well and keep us posted on developments.
: )

Heck yeah. Nature is the best form of therapy. Raking the forest floor sounds darn near genius unless one's genius isn't quite stable enough to know what a lawn sweeper is.