Nettie in the Queen City

Today was looong. Went to a conference on education and technology. Looking for clients. Met some cool people- someone who works at the library and is interested in mailVU. I'm interested personally in the library- they have no TV shows on DVD. None. Also someone with a woman's group doing journalism on the DNC.

Then, I went to the car dealership to check out the Hyundai Accent I'm buying tomorrow. Rather odd experience. Asked to talk to the woman I'd been emailing- she'd just left to get contact solution. Okay. They try to call her, no one answers, then someone else answers. So, three other people are helping me- I want to know the total price of the car, if I can bring it down, if I can transfer my old tag, plus the iPod connector isn't syncing my phone. The main guy helping me is inattentive, taking calls, generally taking forever. Ugh. But, I want this car, and I think the price is fair. And I got him to take my business card.

After that, I had a networking event, Charlotte Marketing Association. Was starting to fade. But, made some more good connections.

Talked to Beverly again, several times. She called heparin in to the CVS here and I picked it up (barely made it!) so, we're going to try that as an instillation tomorrow.

Just realized I'm using "we". Shannon and I talked about who was in control when Beverly gives me these treatments. I feel like I'm giving up control, of my body. She says at most it's shared control. And trusting Beverly to take care of me, knowing she'd stop if I told her to, trusting that she's doing what she is to help me. And I absolutely trust her. So yeah, it is shared control, it's "we".

Anyway. Got through the day without crying- guess the distractions- but faded about four- and about eight my brain just shut off. Trying to drive, trying to think. As in, the wine glass is useless without wine.

I hurt, and am swollen, right under my jaw- guess the lymph nodes there? Also brilliantly realized that if I wanted to see my throat, I needed to say, "ahhh" like at the doctor's. It is indeed white. So strep seems probable.

It is not illogical that I am sick. My roommate is a teacher. I meet a lot of people. Dr. Taylor said that moving might mean being sick more often than usual. Even the yeast infection- I forgot to eat yogurt a couple of days, and with the Mirena I may have gotten a few without antibiotics.

But now strep? I'm not sure if I have thrush also or if that's strep. But if I do that's odd. Scary. It's like my body's been defending and defending against these sinus infections, and the YIs. And then the UTIs and thrush. And now it's getting tired.

Not scientific. But how I feel. Tired- mentally, and physically- of fighting infections. And the antibiotics are tired too...

Anyway. I'm seeing Dr. Taylor on Friday morning. I'll tell her all this, hopefully in a coherent manner.

So, have a lot in my head, over the past few days. An attempt to organize it:

• been crying off and on all day today. Talked to Shannon, Beverly, and the allergist's office. Talked to Shannon yesterday also, after panic attacking at the office and crying all the way home. Worked through a flashback then, among other things. Shannon thinks I have an infection. I don't know what kind.
• When I talked to Beverly: I do have a yeast infection. So, that explains some symptoms. Have one dose of Diflucan in me. Told her I was still hurting, so I'm going to get another bladder instillation treatment on Thursday (possibly with a different drug, if they are able to order it).
•  I really didn't want to get another one this soon- didn't want to drive to Columbia again, wanted to give it some more time, I'm afraid I'll have another flashback. One of the infection possibilities is a UTI- I am going to the bathroom more, and I have been catheterized twice.  But the going to the bathroom could also be caused by my IC, or by the yeast infection. 
• Talked to Shannon about how to make the treatments easier- i.e. by asking Beverly to show me what she's using before she does it. I also plan to ask her to remind me that I'm okay, that she isn't going to hurt me. (Even though I know these things, it helps to hear them).
• Allergist: I had skin allergy testing yesterday. Pricks on my back, and intradermal on my arm. Came out as only being allergic to dust mites. When I got home, I found two reactions on my back- if I was only allergic to one thing, what's up with that? 
• I called them today, and eventually rambled to a triage nurse for twelve minutes. (feel kind of bad about that. I wasn't mean, just...long-winded.) She said that I hadn't shown any reactions on my back, so they'd done more intense tests on my arm, and that had shown only the dust mites. And that the places on my back might be just irritation from the skin pricks.
• This doesn't make sense to me. One, I know I'm allergic to other things- my nose runs when I go outside and the grass has been cut. Also, that explanation of allergy testing- how can they test everything on my arm- it was only about twelve places, as opposed to like forty on my back (totally making up these numbers). They would have to combine them. I thought the deal was, they saw where there were mild reactions on my back and then looked for more intense ones on my arm. 
• I think it's possible I didn't react to some things I am allergic to for a couple of reasons. 1- I take a while. When I've had severe food/drug reactions, it takes over an hour (most people, it's a few minutes). Also, I've just moved- I think Charlotte and Columbia are pretty similar in terms of plants, but that could be a factor.
• I don't think I'm communicating well with my allergist, Dr. O'Connor. The first time I saw her, I felt really intimidated and didn't say much. This time, she just came in a couple times while they were doing the testing. Also said they were going to do "a pokey-poke on your arm" which kinda pissed me off. I'm not six. 
• The triage nurse said they'd talk to her again on Friday. But playing telephone with other people isn't effective. I think I need to make an appointment with her soon. Say, my primary concern is to not get sinus infections anymore. I want to ensure my allergy testing was accurate and these are my concerns. I know my body. I do have PTSD so sometimes I get scared about things. Etc.
• I think I can actually solve this problem.
• Infection: When I get sick, i.e. a UTI or a sinus infection, I get wacky mentally. I.e. the crying jags are pretty typical, as is the rambling. I tend to be more irritable also. So yeah, I am probably sick. My throat is kinda sore. Slightly congested. I looked at my throat to see if it was white (i.e. strep). It's not, but my tongue is. Which suggests thrush. The past times I've gotten thrush, it's been an opportunistic infection after taking antibiotics. But then again, so have my yeast infections. Neither of those mess with my head.
• So, if it's thrush, why the hell do I have that, since I haven't been on antibiotics in a couple weeks? I can think of all sorts of scary reasons why. 
• Not sure what course to take in finding out what's wrong with me. The past two times I've seen Beverly, I haven't had a UTI. But, sometimes they take a while to show with me, or it might be new. So, I could wait till Thursday and have her check. Possibly she could even treat it (like a shot...or something scarier...)
• If it isn't a UTI, I could try to get an appointment Friday morning with Dr. Taylor. To check for strep. If it isn't that, I don't know what the hell it is.
• Since I'm scaring myself, I could try to get an appointment tomorrow afternoon with Dr. Taylor. To be honest, UTI is the most likely possibility. But I don't know why the thrush has popped up again. That's what's scaring me- is there something wrong with my immune system or something?
• Work. I'm going to an education conference tomorrow to try to find clients- we have lots of free users in the education industry, couple paid. Tomorrow night I have a marketing association happy hour thing. Friday afternoon my boss Alan and I have a client meeting. That night our office building is going to a Bobcats game.
• Alan- I need to be honest with him. Today I worked from home- I told him it was because I was car shopping. Which was basically a lie. He doesn't mind me working from home- last week he told me to because we had a big client in and our current office only holds three people. But I didn't move to Charlotte to stay in the house. Being by myself isn't good, but it was stay at home and cry (and watch SVU, which is bad), or go in the bathroom to cry plus drive in the traffic and cry. 
• Anyway, I need to tell him something. Like, I'm fighting some chronic illnesses and have ended up going to the doctor more often than I thought I would need to. Some days it's hard for me to drive in, but I can be productive from home? Or some days I have appointments and I'm in other parts of town so I can work from coffee shops? The problem is when I feel like crap, mentally or physically, and can't/don't drag myself in to work. I don't know if it's a problem- I don't think it is, and I do work- but I want to be honest about the reason I'm doing it. I'll have to work on this.
• Car thing. My dad told me this weekend he was going to come up today so we could swap out cars and I could go buy the car I'd picked out. He told me this morning that no, he didn't tell me that.
• I'm trying to tell myself that my parents are being awesome by letting me use their car. And by giving me money towards my new one. But I always hated it when they didn't keep their word when I was a kid. And I hate it now. He did tell me he'd come up today. 
• Now, since I'm going down to Columbia Thursday, the new plan is to for the two of us to go up to the dealer and get it then.
• But, the dealer doesn't take personal checks. Or credit cards. Which is not only a pain (getting a cashier's check- from the bank I guess?) but makes me somewhat suspicious.
• So, I'm going to have to go over to the dealer between my two events tomorrow. Check out the car and make certain that I like it. See if they will cut me any deal on the price. If I decide for sure they aren't shady, fill out any paperwork I can in advance, because we'll be cutting it close time-wise on Thursday.

I think that's it. So, tomorrow: I have to pull it together for a long day. Hopefully the distraction, and treating the yeast will help. Thursday, the current plan is to drive to Columbia, see Beverly, then Shannon, drive back to Charlotte (I'll make my dad actually drive), then buy my new car. I guess that's exciting; I've been viewing it as a pain. But I plan to name it with a Harry Potter spell!

Friday should be good- hopefully my infection will be a UTI and I will have started treatment. If not, hopefully I can get an appointment with Dr. Taylor and it will be a simple fix. And the Bobcats game will be fun.

I can do this. Every night I look at my picture of Mariska, and the picture of me with Amanda, and remember how strong they are, and promise them that I am strong too. I am strong too.

Having several chronic illnesses, I see several health care providers, pretty often. And having a background of being hurt, thus pretty major trust issues, I require them to be not just good, and competent, but awesome.

Through referrals, research, and I think a lot of luck, the people I see regularly, are indeed awesome. I am especially fond of my GYN nurse practitioner, Beverly.

When my primary care doctor two years ago, Dr. Birdsong, thought I had interstitial cystitis, she referred me to a urogynecologist. I had an okay first visit, but the second, well, I think I caught her on a bad day. Anyway, one day when I'd started going to that clinic, I was in an insane amount of pain. Desperate. Called them, and Beverly was available.

I have a pretty good ability to judge people when I meet them. Beverly wanted to help me that first time, because I was hurting, but she didn't push me. She asked me if she could touch me through my clothes. And I agreed to let her do a pelvic exam, because it would help her help me. She was incredibly gentle, and helped me get out of pain. I was boggled that I did that, trusted someone so much that I just met.

I started seeing her for my IC, and then my GYN stuff. And she has helped me so much. Physically- I now have a Mirena after years of trying different BC pills, and I'm starting to think my IC may finally be controllable. And emotionally? I don't know how the woman does what she does. She knows my major life events, and I've told her stuff about my body that I didn't think I could tell anyone but Shannon.

Thursday I had another bladder instillation done, because the one last week helped. I got back really fast this time, kinda wanted more time to mentally prepare myself. And while she's doing it, she's talking to me, and I'm actually able to talk back, make conversation. Even though it hurts this time.

Beverly told me to lie there and let the solution "soothe my bladder" for a while. Which felt good actually. Then I went in her office to talk to her, told her I felt like I had a yeast infection but I wasn't sure. She said, "I wish you'd told me that while we were in there cause I could have done a culture." "Well, if that's what you need to do..." "Are you sure?" "Yeah, okay."

So, surprising myself, I went back in the same room, and took my pants off again, and got back in the same position again. I had my eyes closed, because I didn't want to watch what Beverly was doing, and I didn't know what else to look at. I was kinda freaking out. I went, "What are you putting in me?" and Beverly went, bringing me back, "Nettie. Look at it. Look at it. It's just a Q-tip."

I saw an OB-GYN MD before I saw Beverly, who was pretty good with me. From what I've heard, I don't think she's as good with everybody. I think my personality helps people be empathetic- they can tell I'm a survivor and they want to help. And I'm also smart, and funny, and generally awesome. I was eventually able to tell that GYN I was a survivor, and other things.

But Beverly is different. My first GYN I would have gone, I already let you examine me once, no way in hell you're doing it twice in one day. I know some of that is me changing, also. When Beverly talks to me, she knows to pat me on the knee or shoulder. I make her laugh. When I ask her for hugs, she likes giving them to me. She tells me she misses me now that I've moved. And often, how much I've improved, and that she's proud of me.

Shannon says that women's health specialists are close to therapists. Now that I wrote that, I realized that just as Shannon will never judge me, Beverly won't either. Which is important as we keep working together to best treat my IC, and me.

Beverly made a point to say that while she was glad we found a treatment "that you like" -"I wouldn't say like!" it was up to me when to get the instillations, how often, that she'd do it whenever I felt comfortable doing it. Putting me in control, in charge.

I am a control freak. I have to give up control when she's examining me and now, giving me treatments. And I don't think that will ever be easy, or not scary. But when I'm giving control to Beverly, I think it's okay.

I know my boundaries. I don't want to be her friend. And even though I think mailVU could improve every business I come across, I don't want to do that either. I am just so freaking lucky, and grateful, to have the relationship with her that I do. Because she rocks. (And so do I. I do!)

Yesterday was Ignite Charlotte. The idea of Ignite is "enlighten us but make it quick". MailVU was a sponsor; we also had a demo booth.

Got there at 3:30 to help set up. Hung out a bit until people started arriving and I persuaded them into the demo booth.

Met some (mainly Twitter) friends there. which was majorly cool, and made some new friends.

The past few days we've had a major client, Paul, in the office (because our current office is so small I was 'banished' to working at home). He's British but works in South Korea.

He came to Ignite also, then we went to a Cajun restaurant afterwards and had Hurricanes (I stuck with Category 1). He has a real breadth of knowledge- American politics, British politics, education, sports.

Thing he said that struck me the most: the London sewer systems were built 150 years ago, and the engineer planned for this population growth. My immediate thought: Helen Magnus totally did that!

St. Patrick's Day in Columbia- 5 Points- is always awesome. I went with my sister Janna; we watched Crossfade. Then I met up with my friend Paige and listened to some country band she liked. Met back up with Janna and listened to Hinder for a while.

Then we really started. Janna and I went into a bar, Group Therapy. I had a partial flashback- was a little drunk- but she didn't want to go. So I got really, really drunk. Janna was buying, this guy she met, Reid was buying, this guy I met (I don't remember his name) was buying. (I don't believe in getting drunk on drinks I buy at bars. Too expensive.)

Eventually we started walking back to Janna's house. Made it to Reid's first. He played with her feet and I played with his dog. At Janna's house, her supposed-to-be roommate, Amanda, was there, also drunk. I shortly passed out on Janna's bed and Amanda at some point passed out in a sleeping bag. Also at some point Janna left because Amanda was annoying her. I assume she went back to Reid's.

I got up the next day, drove back to my parents', slept forever before driving back up to Charlotte. Got a little sunburned. Had a good time with my sister and my friends and some strangers.

Good times.

I think this deserves its own entry.

I saw Beverly today. My appointment was at 9:30 meaning I left Fort Mill slightly after 8. Between waiting in the lobby, getting vitals and a urine sample, waiting in the lobby again, and waiting in an exam room, I think I waited almost two hours. Not normal in their office. My prevailing thought was, 'If I'd known this, I could've left later and maybe gotten more sleep!'

I was pretty calm though. My blood pressure was 100/60. Entertained myself online, wearing my phone down.

Beverly came in, and we talked about a lot of things- changing the dosage of my meds, my diet- I don't even try to stick to an IC diet cause it's really restricted and I try not to spend too much on food. Also my job and her son-in-law who's a police officer in Fort Mill.

At some point she brought up bladder instillations, which are medications placed into the bladder through a catheter to treat IC. And I said, if my insurance company approves it, and you do it, I'll go for it.

So then I waited in the lab area while the office people talked to my insurance company. And at one point, Beverly was talking to me and someone else and said, 'see if we can schedule this.' I said 'Thursdays,' and she said, 'Today.'

And I'm going, 'Ohhh. Oh. I didn't know you meant today. Right now. Okay.' so, I asked how long it would take- it was 12-something at this point- and Beverly said '5 minutes'.

I went out to the car, ate a fruit-fiber bar, took some Ativan, and got my phone charger and a pair of socks.
Went to the bathroom, then into another exam room.

I don't think it was so much getting naked- by this point I've done that so often for Beverly, more than for any other person. It was what she was going to do, something I'd never experienced before.

By the time I got undressed and music and everything, I think I only waited 5 minutes for Beverly. When she told me to slide down, I told her I was scared. And she said, "I know. But I'm gonna talk you through it."

Which, she did. Really, the thing I felt the most was her swabbing me with Betadyne. Beverly is very, very good at what she does.

And, I stayed there. I didn't dissociate. I could feel her touching me, I could hear her talking to me. I talked back- mostly 'okay' and 'what?' but once when she said, 'it's not gonna hurt you', I said, 'I know you aren't going to hurt me.'

When she was done, she put her arm around me and helped me sit up (which I think is a really compassionate thing for her to do.) and she asked how I was doing, if I was okay. I just went, I don't know, I don't know. And she told me I did so much better than I used to do.

When she walked me out of the exam room the first time, I asked her for a hug- she gives really good hugs. She told me she was glad I moved because I was doing so well. That she missed me.

Shannon once said Beverly was a fluke of a person. This is true, because I cannot imagine anyone more wonderful at what she does- her technical skills, her compassion, just her very being. Sometimes I can't believe I have her to help me.

After the instillation, I lay on the table for a few minutes, debriefing. I could feel the solution leaking out of my body, which was freaky. I got a pad from the bathroom, and drove to Shannon's office. By then I was dissociating.

It was over an hour until my appointment. I asked one of her receptionists, Anne- they're both awesome and have seen me in a range of moods- if I could sit somewhere and wait for Shannon. She told me which office was empty. Got a drink, some chicken salad sandwiches- okay, I know this place well- watched Stargate, waited for my appointment.

Shannon made me process what had just happened with her- kind of weird, since I hadn't processed it at all. One thing stuck out to me- she said, "If I had asked you last night if you would let Beverly do this today, I bet you would have said no." but I wouldn't have.

I made a point not to obsess over it, but I knew it was a possibility I might need a bladder treatment, might need to be catheterized, when I made the appointment with Beverly. I've known that since I was diagnosed with IC and researched it, really.

I trust Beverly, pretty much completely. And I also want to get better. At this point, the bladder instillation, in her hands, was the best option for making me better. So I made that choice. It still feels kinda unreal, can't believe I did it. Can't believe I got catheterized, something that has terrified me, because things aren't supposed to go there. But I made a choice, for me, and I believe it was a good choice.

Shannon told me too that I was so much better in these situations, that I didn't overthink it, that she was impressed.

I do feel better. I don't have back/side/pelvic pain right now. I am a little sore, from the catheterization I think. I went to the bathroom once at Shannon's- I think letting out the solution- and I've been either once or twice since then.

Beverly said the first treatment might work, or I might have to come back for more. The stats I found online on how long relief lasts and how well are conflicting. But, if I have to go see Beverly for more treatments, I think I can deal with that.

I did good today. I coped with first a frustrating situation. And then a really scary situation, and I did it well. I'm good.

Today went as well as it possibly could have, I think. Got some work done in the morning. Then put on a skirt, did my hair, put on makeup, and drove to Chester County for traffic court. Yes, I was going for sex appeal.

And it worked. I told the officer- 'I don't remember what happened- I could have hit someone, a deer could have hit me, someone could have tried to merge and hit me. I think you should err on the side of innocence.' He said, 'I think you hit a tractor trailer [probably] but since you were the only car involved and no one else has come forward, I'm going to drop it.' so yay! No fine, no points!

I then had plenty of time to make it back to my 4:00 appointment in Charlotte with Dr. Taylor. She told me I looked pretty. (I usually go in there on my work at home days, in exercise pants and T-shirts). I asked her if there was something else we could be doing, besides the cycle of antibiotics and opportunistic infections. She talked about the allergy shots, treating the underlying cause. Also said that moving might cause me to have more infections for a while- a year- while my immunity adjusts to the infections in the area. I'm going, 'I thought moving would make it better!' then she told me, 'when I moved, I was sick for a year. My office manger thought she'd gotten a sick doctor!'

I also told her, 'I'm going to see my GYN in Columbia tomorrow about my IC, cause she's been handling that.' her only reaction was to tell me to drive safely when I left. When she was examining me, I felt a little scared and had to tell myself, it's okay, it's okay. But I was like that with Dr. Birdsong too.

Dr. Taylor gave me steroids, which I find preferable right now to more antibiotics. But she did give me an antibiotic prescription, plus a Diflucan prescription, to take later if I need. So, good communication, barriers down some more, and good outcome.

Tomorrow I have an appointment with Beverly. It's at 9:30 meaning I have to leave here at 8:30 at the latest. Not thinking of the possible scary treatments. Just that it'll be nice to see Beverly, and to get my IC taken care of. Then at 3 I see Shannon, 5:30 is Media Club. Friday I'm having lunch with a few friends. Saturday is Columbia's big St. Patrick's Day Festival. Sunday the pagan group I used to go to is celebrating the spring equinox. So, it'll be an awesome, eventful weekend. And things are going well.

But, as Shannon says, if we could only turn your brain off...I've been experiencing phantom smells- garlic bread, air freshener, vomit. Last time I had phantom smells, I had events- I wasn't sure if they were partial seizures or really bad dissociation. I don't think I've had those. I have a cut I don't remember getting- not entirely unusual. But I made a comment online; I don't remember doing it, and I don't remember watching the TV show I commented on either. That is odd. My seizures started with me doing things and right after I didn't remember.

I guess I should go see Dr. Taylor about this. I'm worried that she'll try to send me to a specialist, or that she'll try to take my license. I can look up the North Carolina laws...but I don't want to have a full blown seizure. This also means telling her my story. blah. So many thoughts...