Well, I now know the same thing I knew last week, but with better tests.
I had a moment where I needed to cry, but it passed.
They’re going to cut a hole in me and make their way down to my lymph nodes and take one out and pull it apart and see what it is that’s going on.
I don’t know when, yet. I guess the next step is to wait around to hear from the surgeon.
The new doctor thinks it might be sarcoidosis. I think Dr. J had that in the pool.
Also, apparently I have the hugest tonsils he’s ever seen. He thinks they might be causing my apnea.
If I think about all the “what if”s, I start to feel dizzy and I have this raw spot in my throat and it’s hard for me to concentrate on what the doctor is saying. Instead, this is what I think about–a tobacco-tanned hand, roped with veins. That’s something that exists out there in the world, in the waiting room, in fact. And that’s something that will be there no matter what the news is.
I don’t know why other people need people, but that’s why I can’t do this shit alone. I have to have someone for whom life is going on in an ordinary way, so that I can let go of him, walk into the room where they poke and prod you when they’re not making you sit by yourself so long you start to forget why it is you’re there in the first place, and, when I’m done, come back out and steady myself again by him.
Tiny Cat Pants 
*hugs*
We’re all here, waiting for you. Even if I have to miraculously come up with a week off work, a plane ticket to Tennessee and a really good excuse for going there.
B, let me know when they schedule it, and I’ll try to walk over and see you during the day.
*more hugs*
What a precious thing a good friend is in times like this.
We’re a couple of lucky women, B…even in times like this.
Let me know if there is anything I can do for you, man.
My Aunt has sarcoidosis and has been diagnosed for over 20 years. This is not as big and scary and they tell you and it is very manageable. Keep asking questions and be proactive for yourself. Do not sit and wait for the medical staff to come to you, call them first and make your appointments. A little bit of decision making and control will make you feel a lot better.
Keep a separate journal and notebook, noting the dates of all of your appointments, whom you met with/talked to and what you learned. This history will be invaluable for you in the future for managing your health and your insurance.
Hugs to you, and a glass of nice wine. Well, the wine is metaphorical unless you want to come over and get it, but.
The journal is a wonderful idea. I did that when I was dealing with the complications after Amanda was born. There’s no way I was in any frame of mind to remember everything when I needed to, and having it all written down was invaluable.
I’m hoping with all my heart that this will all turn out okay for you. I’ll even burn some sage if you think that would help. xo Peggy
No helpful advice. Just…yeah. Glad you have an anchor.
Hey you… Long time no post from my end. Been barely posting on my wn blog due to fighting some demons lately. Just can’t seem to shake it and don’t want to bore people with my *issues* — Came here tonight to catch up and find you blue & scared. Hope all goes well… and that whatever they find – that you get better soon! Sending lots and lots of positive energy your way! xox
Oh dear…
I send you good thoughts and if you need anything, if I have it, it is yours.
P.S. Listen to SaraClark. She’s right.
You know? I’m not sure why, but this fucking pisses me off. I’m just so angry I want to throw something or beat somebody up. What the fuck? They need to figure it out! I’m sick of sitting and being quietly supportive. I want to break something.
Me, too, sometimes. They’re going to cut me open, right at the top of my breastbone and stick a bunch of shit down into my rib cage and cut out a part of me, never to return.
I’ve been under general anesthesia twice in my life–once to have my wisdom teeth out and once when they did the colonoscopy–and both times I woke up during it.
They’re going to cut into my throat and I’m going to wake up in the middle of it. Plus, I can’t fucking breathe. How are they going to get oxygen into and out of me if I stop breathing while I’m asleep and they have my throat all cut open?
I can’t think about it. It makes me just want to scream and cry and hide under the bed.
I am terrified and I just want to know what’s wrong so we can formulate a plan and carry out said plan and get on with things.
And I know going through this is a part of figuring out what’s wrong, but I hate it. I hate that I feel alright, because feeling alright is supposed to be how you know that you’re alright. It’s like my body’s lying to me. I hate the thought of being cut open. I hate hearing the worry in my parents’ voices and knowing that I’m causing it.
And I hate feeling like I’m being such a goddamned baby about the whole thing.
Anyway, yeah, I, too, feel pissed and scared and pissed some more.
B,
A few thought from my previous surgeries…
Make sure you tell them about your experiences with general anesthesia. You should have an anesthesiology consult prior to surgery, and a good one will ask you, but if they don’t, you tell them.
You will be intubated, and have an oxygen sensor, so they will make sure you are getting enough oxygen. You’ll be out before they put the tube in, and they should take it out before you wake up.
Even if it’s just day surgery, you need to make sure to take some time off work afterward to recover. General anesthesia and surgery wipes a person out.
I know it’s scary – I had my throat cut open for my thyroid surgery. Do you have someone to come with you and sit with you just prior to surgery, and people to be there after? I can come over.
What everybody said, doll, especially Rachel and saraclark. We will continue to send up prayers for comfort and peace and speedy healing and very smart and kind medical professionals for you. Especially the comfort and peace parts, and especially right now.
We love you.
Also, you should make a list of questions you have and take that with you to your meeting with the surgeon. Sometimes it’s hard to remember once you get there and get all of your questions answered.
((hugs)) from me. I’m glad that I was able to diagnose you on the internet. Don’t tell Chet this. He is already so high and mighty about diagnosing himself with whooping cough last year and being right. I was like, “Whooping cough? Isn’t that one of those diseases like “the vapors” that aren’t around anymore?” He went to the doctor, and, sure enough, whooping cough. (Now I think I’m coming down with “the vapors.”)
I don’t like the idea of them digging around in your lung. But if they think it’s necessary, I suppose I’ll let them. :) It really would be good if you could have one of your awesome friends go with you to be an advocate and make sure you ask all your questions and get them answered. It’s not fair to expect the sick person whose body is being talked about and cut into to be some kind of on top of things, assertive self-advocate. You’re just not in the right head space for it. Wish I could be there for you.
((more hugs))
And I hate feeling like I’m being such a goddamned baby about the whole thing.
No, you are not being a baby, so just stop that stinkin’ thinkin’ right now.
I have vacation days…if you need someone to help out, please do not hesitate to call on me.
This is real life (as opposed to bloggyland), and where we lean on each other.
You can lean on us, B.
Oh honey pie.
Sugar doodle.
So many kisses (open mouth with tongue).
And hugs (the kind where I kind of give a back rub while I’m squeezing).
You are going to make it through this.
It’s OK to be grumpy.
xoxoxoxoxo
Remember that you have the right to have other people in there with you. Not the actual surgery part, but definitely the regular doctor’s visit bits. You don’t *have* to sit in that cold room all alone while you wait. When I go to the doctors, I have no shame about bringing my mother or boyfriend all the way into the room with me, and having them sit there for the whole checkup time.
If you want to take the Butcher, or Mack, or anyone else, you can do that. You don’t have to explain your relationship to the person or justify it, you just have to say that they’re with you and you want them to be there. (Of course, it helps if the person is a relative or close friend, or at least someone you don’t mind seeing you half-naked, if you’re going to need to don a gown or anything like that.)
After going through some scary medical stuff by myself and being freaked out by it and ending up missing/forgetting/not hearing some vital information I try to share what I had to learn the hard way.
Always take someone with you to listen, to take notes and advocate for you, no matter what your age. They will totally give you a different perspective on what you heard from the Dr.
My uber organized extremely intelligent Aunt, kept a spiral notebook with her the entire time that my Uncle spent time in the hospital due to a severe injury accident. Every Dr. visit was documented along with their names, dates and notes-after a while the specialists became very confusing and she would reference previous visits and infomation with the next Dr. accurately and quickly. She had prescriptions, dosages and time schedules to the point that the nurses consulted with her on shift changes. The total information that she kept month to month and even year to year is still valuable to this day almost 15 years later. I learned from her and my parents both keep a similar type of record of their health issues and Dr. visits now as they age. I wouldn’t know their Doctors or medical histories with out the Journals and it would probably help the Butcher or Your Parent’s make decisions for you if they needed to.
Also, if you don’t like your Dr. or care, it would help to remember them, so that you don’t go back.
All right, saraclark! You’ve convinced me. I’m buying a notebook this very evening. Mag, I’m just not sure about the etiquette involved. If I disrobe from the waist up in front of Mack, am I obliged to swing my bra over my head and throw it in his direction or not?
If I disrobe from the waist up in front of Mack, am I obliged to swing my bra over my head and throw it in his direction or not?
a) throw it in his direction, of course!
b) can I come a long with a hidden camera to capture the look on his face? I just know I’d have the YouTube Clip of the Year with that!
*grins* I think Ginger’s got you on the etiquette.
And I wholeheartedly second the notebook idea. Definitely get one with pockets in it, so you can put things like prescriptions, notes, and other brochures in it (and later, any billing paperwork you get).
I actually made up printable forms for talking to medical billing personnel. Every time I made (or recieved) a phone call, I would document the date, time, and who I talked to, how many times I was transferred, any ID numbers or other things, and specific deadlines that were given. I kept this in a folder with all of the bills and other correspondence from the hospital… which turned out to be extremely useful, since I had to yell at them for about six months to get them to pay for the thing they should have paid for.
Adapting the forms for in-person conversations wouldn’t be hard, if you’d rather have something like a graphic organizer to work with. If nothing else, they look bloody impressive when you fax them to people.