Tuesday, July 15, 2014

the worst anniversary ever {{warning: long post!}}

I am one who keeps track of things. It's in my nature. I have a planner (where I write more things down after the fact than I do beforehand), and a journal, and facebook, Instagram, and this blog. All of which serve me well in keeping track of dates, and things that happened, and my feelings, and, as it so happens now, my pain journey. It's part of who I am. So, it comes as no surprise that I know when my pain started. And the anniversary of that time is this week. Three years.

Actually, it's funny because I don't have the "actual date" the pain started, because it started as an ear ache/jaw pain that I thought might be an ear infection or a tooth problem. But I have the dates of my first Dr appts (Aug 3 I saw my dentist and Aug 9 I saw my reg Dr). And I made a note in my planner on one day that I had had the ear pain for about 4 weeks at that point, which backtracks to this week. So, yeah. Happy Anniversary to me. Worst anniversary date ever.

But in recognition of this, I thought I'd do a few little updates and blog posts that have been in my brain for a really long time.

First of all, how things stand now: Well. Hmm. Let's go back a bit. In November I had the 22 day migraine when my current neurologist refused to give me any help to abort it ("just keep taking what you're on" she said). That wasn't acceptable to me, since I'd already been to the urgent care and ER in desperation for the pain. Not offering me any help to get rid of this pain was not an option. I needed a new plan. And fast. This led me to rallying all my sources to find new Drs or ideas. In Dec I started seeing an integrative medicine Dr who I was told was good at helping migraines and getting to the root of problems. I saw a chiropractor (who honestly scared me so much with his technique, I almost cried, and he asked me if I was ok.... I wasn't really a fan of that - and although I scheduled a whole month of follow-ups, in the madness of Dec, I cancelled all of them and never went back). And I found a new neurologist.

The integrative medicine Dr did a bunch of blood work that led me to a few ideas to try. I started supplementing Vit D, because my levels were very low. I tried a progesterone supplement, just because he said a lot of women feel better with a little more, even though my levels were ok (this may have contributed to the breast discharge problem that I subsequently had, although I've been off of it ever since and still having that other problem. So whatever. Who knows, but I won't take the progesterone anymore just in case.) And my blood work showed IgG sensitivities to milk, wheat, eggs and gluten. I also tested high for an inflammation marker.  So, I went off of all of those foods. The hope was that by avoiding the things that my body was sensitive to, it might reduce inflammation in all of my body, which might be contributing to my pain, or depression, or energy levels, or something. Ok. So we tried it.

My new neurologist was a headache and sleep specialist and had also given me a low-tyramine migraine diet to try. So, that's when I went off of just about every tasty food on the planet (between the migraine diet and the IgG sensitivity foods I was avoiding). This was not a good time. I was lethargic, depressed, and basically slept all day and stopped eating. I didn't have the energy to find things that I could eat and I just didn't feel like bothering with any of it. Plus my pain was terrible. Pain can also be exacerbated by emotions too, so it's just a terrible cycle. It's impossible to tease out all the cause and effects, but I sure didn't feel any better.

In Jan, I also had an overnight sleep study done to rule out apnea, ordered by my new neurologist. I barely slept at all that night, but somehow they collected enough data to still consider it effective. And I got the report and it basically said I DO NOT HAVE SLEEP APNEA. There is a rating score they use to differentiate between normal breathing, mild apnea, moderate apnea, and severe. I was in the normal range. But, the neuro still thought that apnea might be a cause (huh?!?) and that I should try a CPAP machine. Well, the machines are costly and not easy to sleep with, so I held off on that.

He recommended that I try Botox for the chronic migraine. It would take up to 4 treatments, 3 months apart, to know the full effect of how effective Botox would be for me. Everyone has a different response to it. Some people it helps right away, either with intensity or frequency of migraines, some people have an accumulative effect where they get more benefit with each treatment, and some people it doesn't help at all, or even makes them worse. He said it wasn't very painful, most people were fine, and that I wouldn't need the numbing cream that a lot of Drs use for it. LIES. hahah. It was terrible!! Probably the worst medical procedure I can ever recall since the terrible nerve block experience. I sobbed. He asked me if I was ok, and I said no not really. But what else could he do? The injection sites stung and ached and throbbed for weeks. This isn't a typical response. I had more migraine pain in those areas, when previously I didn't have any pain at all there. And my eyebrows became paralyzed - for the entire 3 months that the injection was "working". Oh and the best part?! He had told me there were NO SIDE EFFECTS. Riiiiiiigght. Of course I knew from my own research about all the possible side effects beforehand, but I was ticked that he said there weren't any, and I had decided it was worth at least a try to see if it would help me. I wasn't happy about any of this, and had decided there was no way I could do it again. Just. couldn't. Not worth it.

Sometime in all of this, I was also dealing with breast pain and discharge and having to undergo mammograms, ultrasounds and a ductogram, all of which were not very pleasant.
And the neuro had sent me to a neurotologist (kind of an ENT neuro), and an ophthalmologist. The neurotologist said I most likely had Menieres disease, due to some strange sound distortions I had had occasionally and very rare vertigo episodes years before, and I had very mild hearing loss. But my ear pain, he said, was most likely a nerve issue that the neurologist should help me with. Great. The ophthalmologist said I had very dry eyes and that could cause eye pain. Hmmm. He said I should do drops every couple hrs. But I kind of don't think my dry eyes could be causing the exploding type of eye pain that I experience. I cancelled my follow up there.

So, anyway... the neuro had me try a medicine to rule out Hemicrania Continua, a headache disorder that causes one sided head pain. The med caused half of my soft palate and throat to swell, making me gag, an allergic reaction. I saw a different Dr on short notice who told me I should stop taking it, of course, and prescribed a short term steroid. The steroid seemed to actually help my pain a little, but you usually can't stay on steroids long term. Interesting though.

The neurologist had also tried me on a couple different prescription NSAIDS, a beta-blocker, nausea med, and ear medicine, none of which really helped. He also gave me anxiety meds and a muscle relaxer, which I could take when the pain was bad just to help me zone out and not freak out. Also to help me sleep. That was probably the most help he ever gave me. After a few months being gluten-and-everything-else-free, I went back to the integrative medicine Dr for follow up. My Vit D levels had improved, the inflammation marker was down, and the IgG sensitivities were down but still not normal. Since he wasn't on my insurance and I was paying $200 a visit, we determined that I couldn't afford to keep seeing him. So he recommended I keep off the foods for a couple more months and if I still didn't see any improvement in anything, then it probably wasn't worth staying off the foods (hallelujah). Oh, somewhere in there I also tried taking a thyroid supplement. My levels were on the low side of normal. But I never noticed a difference being on that either, so I stopped. Didn't notice a bit of difference in my pain levels going back to eating normal food, but I did unfortunately gain back the weight I had lost when I wasn't eating. No surprise there.

And then, my neuro kept pushing me to get the CPAP. I explained my concerns in getting it (the cost - $400 out of pocket after our deductible has been met, the possibility of a face mask aggravating my face pain, the fact that I DON'T ACTUALLY HAVE SLEEP APNEA), but he was still very insistent that trying this might help me. He was also very disappointed that I wasn't willing to give Botox another try. Then he tried to tell me that maybe all of my pain was actually stemming from my depression, so he referred me to both a psychiatrist and a neuropsychologist. Hm. I knew my depression had been pretty bad so I felt ok about taking the referrals, since I clearly needed more help than he could give me. But I really didn't like that he wanted to attribute all my pain to my depression. Seriously.
I was seeing a counselor when my pain started and asked him about this, as this is often a question that comes up with chronic pain, and he very clearly explained to me that when pain is associated with depression it most often manifests itself in more vague ways: a dull headache, backache, stomachaches, etc. It doesn't usually follow the pattern of a specific disorder, like Trigeminal Neuralgia. So he didn't think that was causing anything. They might be feeding off each other, as emotion plays a very significant role in the perception of pain, but that would be the extent of it. Many many people with chronic pain get this kind of thing from Drs, mostly when the Dr has run out of ideas and is feeling out of their element. They don't know what else to do, this makes them feel incompetent, and they then blame it on psychology. Most people with pain feel invalidated, accused, and discouraged in this situation. I am not an exception. This, along with his insistence on Botox and CPAP (notably, his areas of expertise), convinced me that I was done with this Dr. He had nothing else in his tricks of the trade to offer me. He didn't know what else to do.

I saw the psychiatrist, who tried me on another anticonvulsant I hadn't tried yet. I had a potentially life threatening reaction, which sent me to the ER. She wanted me to try some antipsychotics to help with my sleep, mostly. I didn't feel good about that. She agreed that getting off the migraine preventative med (also an anticonvulsant) made sense, since I'd been on it for over a year and never felt like it helped at all. The neuro kept telling me my pain would probably be worse without it and didn't recommend getting off. But I followed the psychiatrist's recommended tapering schedule and now I'm off, with no change in my pain, either better or worse. She also increased my antidepressant, but then I started having high blood pressure which can happen from this medication. I had my blood pressure taken in different places and situations (even knocked out in the ER) and it was always high. So, since it was no longer working much for me, it could be causing me high blood pressure (which can happen at any dose), and there's always the slight possibility that my pain could have been caused by it (who knows), we decided to start weaning off of that too. That is a very long slow tapering process, since it is known for having nasty side effects getting of it (one of the worst for antidepressants). The entire process would take a few months, and I'm still in the midst of that. But she told me to call her anytime I'm feeling desperate, or have questions or anything and she seemed like she really wanted to find something to help, and that was encouraging.

I also went and saw the psychologist. She works closely with the neurologist, he referring patients to her, and she likewise. I was nervous about what he might have told her about me, with my stubbornness in refusing the CPAP and Botox, and how he thought my pain was caused by my depression, so perhaps I was a little defensive from the start. I didn't feel comfortable with how my information might be passed back and forth between them and I wasn't sure how it would work, since I had already come to the conclusion that the neuro had basically given up on helping me (our last visit, he told me to come back when I wanted to try the CPAP. Ummm, ok...). And there is also an element of rapport and feeling like someone is on your side. Like someone is listening and genuinely cares about YOUR experience. Having seen a number of psychologists/psychiatrists/counselors before, either for myself or my children, I kind of know how this works and how important this aspect is. Sometimes you just need someone you "click with" for it to work (also important with Drs, incidentally).  But this lady.... she seemed kind, and she went through the stack of paperwork I had filled out and asked some relevant questions, but then she just went on and on about some pain she had (nothing at all like mine) and what had helped her, or her sister, or somebody, and have I tried essential oils, or acupuncture....?  And I was taken aback a bit. During the visit, I just explained that yes I've tried oils and no I haven't tried acupuncture, but that I've tried a whole dang lot of things, and I was exhausted. My Dr had just basically given up on me. I had seen 22 Drs and health providers of different sorts over the last 2 1/2 yrs (to which she said, why do you think you've seen so many Drs?? in a tone that felt accusatory to me, like I'm just Dr shopping to find one that tells me what I want to hear. I felt I had to defend myself against my choices - not really how I want to spend my time).  I've already heard about just about every treatment available, I have been through a lot of crap, and really, can someone just listen to me for once???? I paid $75 to see this woman, I was paying her (I thought) to listen to me, because if a psychologist won't listen to you, then tell me, who will?!?! But I didn't feel like she was listening. She didn't bother to ask me what treatments I had tried, before going on about her own things that helped her, and she hadn't even asked me about my pain enough to even understand it. How could she know what could help me if she hadn't even talked to me about what it was like? She recommended a book about managing chronic pain (which I now have from the library) and suggested I take an online inventory assessment-thing that would help me clarify my strengths and values, which she said is important to remember during pain. I did it, which I found fascinating but not particularly helpful or relevant to what I'm going through. I went back to her again, and we talked a little, but it was clear this wasn't a good fit. If nothing else, I need someone not so closely connected to the neurologist that was driving me crazy. We mutually agreed that I probably shouldn't continue coming back. So that was that.

So that's where I am. I've started getting these terrible insomnia episodes (where I sometimes never fall asleep at all, all night long) that don't make a lot of sense to me. I've never struggled like this before. I don't know if it has anything to do with the medications I'm getting off of, or just my general anxiety levels, or my pain, or what. My pain seems about the same as it's always been, although it's really hard to evaluate that objectively. I sometimes don't get out of bed much for days at a time. I don't have a Dr to see currently. I'm just kind of in a holding pattern until I get off the antidepressant and then evaluate how I feel. There was also a very slight possibility that it could be contributing to the breast problem. So I'm waiting to do anything else about that (since it is ongoing) until I'm off of this too. It all just really stinks. Sometimes I am doing ok, sometimes I am just not.

And for three years now, that's how it's been. Every single day. Happy Anniversary.

Monday, June 30, 2014

A Car Story

When Zac and I were first married, neither one of us had a car. We had been college students with our roots out of state, heretofore able to get everywhere by foot: school, church, work, groceries. We hadn't needed a car and we couldn't have afforded one anyway. Plus, going home for vacations and summer to NJ and VA, respectively, was easier without a car to worry about.

But then, we were a married couple. We borrowed a truck from our good friend's girlfriend to use to leave our wedding reception and I taught Zac to drive its stick shift on our honeymoon. It was sort of hilarious, but we were just so happy to be married, we really didn't care much. When we went back to school in January (and returned the truck), Zac was riding his bike in the snow to work at night from 10 pm - 2 am (not the most ideal). Our church for married students was farther away than previous congregations had met. It was possible to walk there, but it took a long time. So we ended up asking for rides (especially when it was snowing) and that was kind of a pain. And yeah, walking back from the grocery store with bags of food on our backs and draped over each shoulder and arm was getting tiring.

So we decided to look for a car.  Wohoo!!
Zac found a 96 Toyota Tercel that was in our price range; a salvaged title but only 17,000 miles, 2 years old, and in great condition.
We had a friend drive us to look at it and purchase it. He drove us 30 min away to my uncle's bank where we applied for our loan.
And then we were the happy owners of our little Tercel.


The following summer (1999), after I had graduated and given birth to Abigail, Zac had an internship at an accounting firm in DC. We did an apartment swap with a couple in Fairfax so we stayed in their furnished apartment but we still had to bring some dishes and baby gear, plus clothes etc for the whole summer. We packed all of this bumper to bumper, floor to ceiling, in the Tercel and drove from UT to NJ (first) to VA with Abigail only 3 weeks old. I remember she still had her umbilical cord stump attached when we left. It came off sometime during the trip. She was nursing and we stopped about every hour or so the entire trip, either to breastfeed, or change diapers, or comfort her in some way. It was quite possibly the most uncomfortable, tiring, hot, awkward, and LONG trip of my entire life. We pulled off on highway exits just to stop on the side of the road (because there really isn't anything else around on some long stretches of Wyoming, etc) and sat there to nurse her. One night in particular we sat in the car in the dusk, facing some fenced off field full of cows, and the cows came closer to investigate this silly sight of me feeding a baby with the side door open (it was hot) on the side of a road where I'm sure not many people ever have reason to stop.

But we made it. We visited Zac's parents in NJ, then went on to Fairfax, VA where we stayed for the summer. Then we reversed the entire trip to go back to UT at the end of the summer. Abigail was a few months older then, of course, so it wasn't quite as difficult, having settled into a somewhat more regular and spaced out nursing schedule. But, still. Oh the memories of being crammed in there with all our stuff, sitting in the backseat with baby Abigail so I could try to comfort and entertain her all those miles.


The summer after that (2000), Zac graduated with his Masters and we actually moved out to VA, where he had accepted a job with the same company he had interned with. And we drove that same trip again, in the same little car. Except this time, most of our belongings were in an ABF U-Pack truck making their way across the country without us. Phew!!

And then, when we ended up moving back to UT (yet again) after living in VA for just a year, Zac drove the Tercel yet again cross country. I flew by myself, with Abigail (age 2) and Isaac (age 2 months). This was an adventure in and of itself. But I was just happy not to be driving in that car again for that long with a nursing baby.

Anyway - we've kept that car for 16 years. It's been Zac's commuting car. And as it got older, the clutch became more temperamental. The engine light came on at random times for reasons we didn't really want to find out. 2 seatbelt latches in the backseat broke and the driver's seatbelt sometimes required some coaxing to get latched (dumb thing). Zac crashed into a deer, smashing in the side and roof and front window. The window was replaced, the dents weren't so easily fixed. The paint started rusting and peeling. But it was a good car, still running, and doing its job.


We thought we might keep it to have Abigail learn to drive on (I've always thought my kids should learn to drive stick!). But then, we paid off our minivan and the Tercel had its registration up the end of July. We would have had to have it pass safety inspection to register it again and with the engine light on, we didn't really want to have to pay to fix another problem to get it to pass. So, the timing was right. It was time for a new car!


And thus we said goodbye to the first car we owned as a married couple. The little Tercel we had driven cross country so many times and had been through so much with us. We didn't want to mess with trying to sell it so we just took it in for a trade. They gave us a whopping $350 for it! 

And now we have a new-ish car. We love it.


And that's the story.:)

Thursday, June 19, 2014

Insomnia

Well, hello. It's 4:05 am and I'm not even sure if I've been awake all night, tossing and turning, before I finally got up out of bed at around 3:45, or if I fell asleep for a couple hrs before waking up at about 2 am (when I looked at the clock), and have been unable to fall back asleep. Either way, it really stinks to be awake and it's been happening more often lately. I don't know exactly why. I know my mind is full of a lot of thoughts. I know I have anxiety that often keeps thoughts running through my head. I review things that have happened, and think of things I need to do, or things I wish I could say to people, or whatever else. Sometimes I just feel bad. And even though I know I should relax and not worry, or let things go, or get over things, or not ruminate, sometimes it feels impossible. I don't know how to get my brain to stop. Sometimes I don't even realize how bad it is and that I'm really having trouble sleeping until suddenly it's 3:30 am and I realize I haven't really slept at all. Ugh.

This is a relatively new thing, too. I used to have trouble falling asleep sometimes, but never like this. Sometimes I'll take something. Tonight I just took 2 Benadryl and I'm waiting for it to kick in. I have anti anxiety medicine and a muscle relaxer I sometimes take. Sometimes with the benadryl, other times just together or one alone. I haven't figured out the magic pill yet. Although I'd rather not have to be taking something to sleep. Sometimes the pain is a culprit in keeping me awake, but right now my pain isn't even too bad. I'm just awake.

Anyway - I thought that maybe if I tried to write a little bit, it would help me. I'm not sure if it has. But that is what is going on in my life right now, so why not write a blog post about it, right? I suppose. So, hello to any fellow insomniacs. I am sad and stressed to be joining your ranks. If anyone has any tips, I'd love to hear them. I'm going to try to go to sleep here soon, again....

Wednesday, May 7, 2014

the unraveling

It's a dreary day here today but I have my window blinds up and light blocking curtains open, which is unusual for me.  And I have music playing (my ipod on shuffle, always an adventure) and I'm determined not to fall back asleep. I want to write, so here I am. I don't have anything in particular in mind to write, I've just had so much on my mind I've wanted to write, and I finally looked here yesterday and was shocked to see that the last date I posted was in January.

So many things have seemed to come to a head. Not that things ever go along in straight line progressions, lining up neatly along graphs, building along, to come to some perfect conclusion, or resolution. No. But some things seem to be stretched until the breaking point. Or explosions. Or build into toppling block towers.
I don't know.
But there seems to be a a misconception out there of the "right" way to be sick. There is some unspoken, mystified, noble way to get sick, remain sick, and then, if you're going to be "really sick" eventually heroically either overcome your sickness or stoically die from it. I think I am breaking an invisible code by speaking of this, but I feel it. I feel it in the memes I see floating around the internet and in little things I hear and from things that I hear from other people in support groups, that they hear from people. That the "right" way to be sick, is to not complain about our ailments. And if we're in pain, certainly no one should ever know it. It is far better to suffer through things for everyone else's sake and hide our pain.
That's what everyone will want to hear about at the funeral, right? How they put everyone else first. How they never complained about the pain. You never even knew. That's the noblest way to die. The best way to be sick. That's doing "right."
But that's not how it happens for everyone, is it. That's like the storybook version.
You won't hear the storybook version from me. And I'm not even dying, so you don't get the heroic ending here.
There won't be people standing up at my funeral saying how I never complained. hahahah!!!

No, here things fall apart. Here you will find the wells of patience running dry. You will find the 8 year old crying that she didn't get as many years of me healthy as the older kids did and how that isn't fair. You will find me locking my bedroom door and telling the kids they can't come in - because they are just too loud and every sound hurts. You will find Zac losing his patience with the kids because he worked all day long and came home to make dinner and then deal with the messy house and kids who need attention, and then trying to gather the kids for scripture study and family prayer, and then getting them all to bed all by himself, while I am locked in my bedroom the entire time curled in a ball, and he hasn't even had a chance to say hello to me yet. Then after the kids are in bed and the house is finally quiet, and I come out to say hello to him because I finally can, I find him asleep on the couch because he's exhausted, And we find days go by without being able to hardly talk because these are our days now and we are both becoming completely depleted.

Here you will find me driving myself to the emergency room because Zac is in the middle of cooking Easter dinner for the kids and he just can't face it because it's too hard. Here you find us facing things we've never faced. Together and alone. Voicing things we'd never thought we'd say. Like, I couldn't come be with you. And, I don't know if I can do this. And, I'm so sorry this is our life.

Things aren't always bad. Don't get me wrong. But like I said, something just reached a point and things just started unraveling. And my neurologist gave up on me. That's a long story in itself. I've found myself grasping at the unraveling strings, trying to hold everything (and myself) together. Sometimes I wonder what will be left.
It's a funny thing sometimes, watching yourself and your spouse as you go through something unexpected like this. Neither of you can anticipate how you will react. You never can. You think maybe you can, you think you can prepare spiritually, emotionally, whatever, for hard times that might come your way, and you think you know someone, and you think you can advise someone else on how they should be acting or what they should be doing in a situation, but unless you are in it, and unless you are them, you cannot know what you would do.  You just can't. And you just won't know what you do, and how you would act, until you are in it. Like in a plane crash, some people freak out, some people are calm in crisis. Some people naturally help others, some the survival instinct kicks in so strong they only think of themselves. They say many people can't even remember how to unlatch the seat buckle because it's different than a car seat buckle. That's how much muscle memory and panic sets in. So don't think you'll know what you'll do. You don't.

And sometimes, it's hard seeing yourself and someone you love as you go both go through this together.
You're both getting a crash course in survival. And you don't know what to do. And then things change, and you start over again.

On a final note: in our house you will also find 4 kids growing fast and becoming their own fascinating individuals and trying to learn to get along. A husband who is giving all he can to his wife and family, who worries about providing financially for all of their needs, and does his very best to keep on top of everything that his wife can't do. A wife who receives loving and thoughtful surprise packages from a group of high school friends who are unbelievably kind. And a beautiful world all around us to notice and take photos of. Life is good.

As I saw in a quote today: "The world is larger and more beautiful than my little struggle." - Ravi Zacharias
It is.


Friday, January 24, 2014

a few of my favorite things 2013: a moment

This is my favorite moment from 2013:



It's from my trip back to Virginia for my 20 year high school reunion this past summer.  The day after the reunion, I met up with a couple of my friends at an old park in the neighborhood we had grown up in. Most of the playground equipment that we remembered had long since been taken out and replaced, which was sad. Except for this sweet old metal whale! And you all know how much I love whales anyhow. So I told my friend I wanted a picture of me sitting on the whale.  Well, I sat down on it and the springs on the poor old whale were so old and loose that as I sat on it's tail, I immediately swung so far back that I almost hit the ground, which of course came as a bit of a surprise, so I started laughing uncontrollably as I swung back up and leaned forward to keep myself upright! And this is the shot she got of me on the whale.  People have told me that they like this picture of me, how nice it is to see me genuinely happy and smiling and laughing. And I agree with them. It isn't often that I get pictures of myself laughing. And I don't often like the way I look anymore smiling too hard, honestly. My face gets all scrunched up and I have a double chin and my eyes are squished and it's really not my best look, take my word for it. But this, I like this picture. And I liked remembering happy times of my childhood with good friends. Lots of good times at that playground.  So many memories. So this is a good moment.:)

Honestly, the trip to Virginia was kind of a hard one for me. 

(I'm just going to leave these photos interspersed out of order throughout the post because it's too much of a pain to try to put them in order, so just enjoy them for their randomness. Maybe they'll make some sort of sense to you. I'll put captions at the bottom. There.:))




The whole idea of going to the 20 year reunion was a hard one. Not knowing who would be there. If people would recognize me. Knowing I have changed - a lot. Had 4 babies. Etcetera. But also knowing that I don't care too much. That I don't care enough to keep me away anyway. But also being very nervous. What have I done in the 20 years since High School? I went on a church mission to Germany, I got married, I graduated from college, had a baby the month after and I've been a stay at home mom every since. That has been my choice and I'm happy with it, but it is hard sometimes to tell other people that who may have "expected" that I do other bigger and better things. I was afraid of listening to a night of "oh I always thought you would do ____" whatever that might be....
And then being overcome with memories of high school. It's just the name of the game, right? And oh, my. It's just kind of overwhelming. Sometimes. It can be that way for me.


And I don't go back to Virginia often. I was born there and lived there my entire life until I got after my mission when we moved after I got home. So the place itself is very strong with memories, for me. Especially this time, with the reunion. It just felt saturated. Dripping with memories everywhere I turned. I was kind of a mess. And I was very nervous about traveling with the pain, too. The flight. And I had never ever gone on a trip all alone before. I know that seems silly, being an adult and everything, but my anxiety was just very high and my pain was very high. I had a bad migraine every single day of the trip. That alone makes me a little crazy. I stayed with my sister and her husband, who I appreciated very much. They worked full-time so I was left to do whatever I planned to do, which was perfect. But I didn't have as much of a plan as I had planned to have, which was stressful for me. I would very much like to be a person that can be spontaneous and can go with the flow and just do whatever comes my way and whatever but I learned that what this does is increases my stress a hundred fold and then I become sort of paralyzed with indecision, and then I make bad decisions. Or I drive around aimlessly and get lost, or end up places I don't really intend on ending up. Or going the wrong way down one way streets. Or all of the above. It's not really good for me. I get emotional.


Some things worked out really well. I did see some friends that I hadn't seen in many many years and I loved catching up with them and it was wonderful. Some things didn't work out as well. Some plans fell through. I got lost, a lot. Every day I got lost. My GPS on my phone kept dropping out, leaving me driving along with no more directions and pulling into random parking lots trying to get it to reconnect and turning around multiple, multiple times, every time I tried to go anywhere. Northern Virginia is a zoo with traffic anyway, but everywhere I went had changed unrecognizably. Even places where I knew I should know where I was, I no longer had any clue where I was. I got lost late at night coming back from the reunion in my own neighborhood, the one I lived in for over 20 years. I was turned around, completely disoriented and about in tears (in my defense, there are no streetlights in the neighborhood so it was pitch dark and I just have a terrible sense of direction - plus, all the trees had grown so much taller!). In fact, I think just about every single day I was there I ended up in tears for one reason or another. I couldn't find my best friend's house in Fredericksburg (she no longer lives there). I drove around where I knew it should be, just to look at it, because I had time to kill, and never even came close. No idea where I was.



It was so overwhelming and disorienting to be "home" but to feel so lost.  I just felt lost. Virginia will always always be home for me. But I felt like in some ways, I was saying goodbye on this trip. There won't be another high school reunion for however many years. I tried to soak in as much as I could, though I know it will never be enough.   I didn't belong anymore. I don't belong anywhere. I've become homeless.











The reunion itself was good, I was so glad that I had gone, although for some reason I managed not to eat a single bite the entire night. So many of the people there were people I had known since kindergarten. They weren't really my "crowd" during high school. But they felt almost like family to me, I have just known them for so long. I don't know if they feel the same way about me. They probably don't. But oh well. I was happy to see them, at any rate. I was the one who became the "alternative girl" into middle school and high school and stopped hanging out with the cool kids. They just thought I was weird. So the reunion was mostly the more popular kids.  I was ok with that. I don't really care. Most of them didn't remember me unless I had already been friends with them before High School. Hahahaha.;) Oh and if I'm going to classify cliques, some of the really smart kids were there too . I knew them too, happily. So I had some people to talk to. But I stood the whole time not really knowing who to stand next to, becoming increasingly uncomfortable in the heels I wore that I hardly ever wear. Ha. The music was loud, people danced, I laughed and talked to people and caught up and tried not to cry and tried to decide how honest to be about my life and pain issues. But it was good.

There were sooooooo many people that I wish had been there that weren't though. Many many many. It made me miss them.




(I did also get to be there for my sister's baby shower for her first baby which was just so much fun!! I do hope to be able to get out to visit her and her new little family more often. I wish, I wish....)




Oh. And I just discovered that I have lost my photos from this trip. All of them except for what I posted in the reunion group on FB and what I posted personally on FB and on Instagram. I'm a little heartbroken about it - there were a lot of just little things, places and buildings (like the house I grew up in and the church I attended) that I took pictures of that are lost and that I don't know when I will get back to go see again. They may not even be there when I get back there again.  I get attached to places. I seem to hang little pieces of myself in the places I've been and when I go back, I see myself there and say hello again. It's important to me, part of who I am.

Anyway, so I guess I ache for what I've lost, as we all sometimes do.
Childhood, places as I knew them, memories, friendships and relationships as they once were, photos, home...
It was an interesting and sort of hard trip to take. But I'm still really glad I did. We can never really go back to anything. We know this. Some people have no desire to go back and see the places where they used to be. They don't want to be reminded of painful pasts, or memories they've put behind them, and high school is just so done, right?
But I guess I'm never one to shy away from nostalgia even though sometimes it hurts. I need to be reminded that the good parts of who I was are still part of who I am. I'm still that girl too. And I still have a home in Virginia, even when I feel lost and homeless.

(photos:
-  me on the whale
-  me and Megan who I've known since kindergarten under our Class of 93 sign
 - my Senior class photo
- beautiful green VA trees
 - old map of Northern VA in the Fairfax County museum I ended up in one day
 - me looking through old nostalgic photos before my trip
- my high school memorabilia
- flying out of Reagan National Airport over DC - saying goodbye
- Virginia postcard
- Megan, Anne and Me ( I met Anne in middle school but she lived in our neighborhood & knew Megan in neighborhood preschool)
- me in front of our High School, the night of our reunion before going over 
- Scott, Ben and Erik that I've known since kindergarten or at least 1st grade
- view from airplane
- me and Shelly who was my best friend in 6th and 7th grade, then she moved away but we stayed in touch
- Amy, Megan and me (we've known each other since kindergarten)
- view of Rappahanock River, Fredericksburg, VA - one of my favorite places
- Kindergarten class picture (pictured, me, Megan, Amy & Scott - from above pictures - can you find us? Erik and Ben were in the other kindergarten class)
- Senior Class memorabilia table - including the literary magazines that I was a huge part of
- Anne, Carolyn and me (Carolyn lives near me! but this was the first time we'd seen each other - across the country - haha)
- My very pregnant little sister Melissa at her baby shower
- Erin, Christina, Amy and me - we had a separate little reunion get together

Sunday, January 19, 2014

what happened in November

Before we go very much further on, it's important to get everyone caught up on what happened at the end of last year with my health. Most of you who follow me on facebook already know this, but since some of you don't, let's make sure we all know what's going on.

So, towards the end of October (Oct 24 - according to my records) I began having a migraine, which wasn't unusual. I tried my usual remedies. Imitrix, my prescribed migraine abortive, plus Aleve. Then the next day when it had come back again, I took more Aleve. That's usually about the max I like to treat my migraines - they say not to take meds more than 2-3 times a week so as not to risk medication overuse headaches. And my Imitrix is only effective at the beginning of a migraine, so that was over and done with. So, not much more I could do with medication. After that, it's just the rest, dark room, ice packs, etc. The longest my migraines had lasted up to this point was I think 6 days or something so.....

I waited.
Having a migraine pretty much aggravates the Trigeminal Neuralgia pain so everything just hurts worse and I'm no good for anything. In bed. Eye Exploding. Hammer pounding on the side of my head. Needles jabbing my face. Everything.
I hit 6 days. 7 Days. We're talking constant migraine. No relief. No break. 8 days.

I decided at this point I needed to go see a Dr. This was waaay too long to have a migraine. Surely they could give me something to "break" it.  Right???
He gave me a shot of morphine, toradol and phenergen. I came home and slept blissfully for about 18 hrs.

Then I woke up and the migraine came back again.
You've got to be kidding me.
Day 10. Day 11.

Day 13 I went to the InstaCare because I couldn't get in with my Dr. and I didn't know the Instacare can't give narcotics. Darnit. So they gave me shots of Toradol, Benadryl, phenergen, and Decadron.  This didn't do a darn thing.

The next day, I called my Pain Management Dr (although he'd never done anything for me), and my neurologist, and my primary care Dr, telling them I'd had a migraine for 14 days and asking if I should go to the ER or what I should do because I couldn't handle the pain and I couldn't get it to stop. Anyway, they all agreed that the ER might be a good idea at this point. So I got Zac to come home and take me to the ER. I just needed the pain to stop. I thought I was going to go crazy.

So, at the ER they didn't even really know what to do (so frustrating). There's no magic bullet to make it go away, they said, especially since I'd already tried so many things.  But they ended up giving me an IV of Bendadryl, Toradol, Morphine and Haldol. Also giving me oxygen.  The haldol was the only thing I hadn't already tried. It's a powerful anti-psychotic and it made me feel really weird, kinda floaty, detached and I didn't really like it at all. I don't think I'd want to take it again.  I think it helped the pain for the next day. I was pretty out of it and slept most of the day. I just felt really shaky and weird, mostly. But by the day after that, the migraine came back again.  So that was day 16.

During all this time, of course, I'd been asking everyone I knew for any advice or help to get rid of this awful pain and everyone was throwing advice at me. Here, go see my chiropractor! Have you tried this? You should go see this Dr, he's fabulous with headaches! Have you tried acupuncture? Hey, my cousin's sister's daughter saw this Dr and he did this thing and she never had migraines again, you should do that too!
And I admit, I was at a point where I was willing to try about anything!  I was so desperate. Truly, truly desperate. But, I was also completely incapacitated by pain. I hardly moved, at all.  It just hurt to move. So it was a difficult thing to balance wanting to get more help and barely being able to survive.

But, on Mon Nov 11 I called my neurologist again to tell her I really needed some help. I'd had the migraine for 19 days. And her assistant (who handles all the phone calls) was so insensitive and rude to me. Basically told me there was nothing else they could do, I just needed to take the medicine prescribed to me, blah, blah blah. And I kinda lost it and broke down sobbing over the phone. And she says, well do you want me to leave another message for the Dr or something?  And I just said, No!! I think I'm going to find another Dr who will actually help me!!
And, so I fired my neurologist.

So that day I found a new neurologist. And I had a friend who got me in with her Dr who was supposed to be really good at treating migraines (I actually thought he was a migraine specialist, but he's actually an integrative medicine Dr). And I did make an appt with another friend's chiropractor, because I decided I might as well give it a shot. I needed to get rid of this migraine and I was willing to do anything, from any angle, to do it.

The next day I saw the Integrative Med Dr and he took 9 vials of blood to test for a whole bunch of stuff.
And the day after that I saw my new neurologist Dr G. and he was concerned about my sleep and wanted me to start on a migraine diet and go to bed much earlier and get a sleep study done. And that night I went to a workshop for the Rezzimax vibration tool that I ordered is supposed to help headaches (and helped my friend with TN). He did a hands on technique on me called intra-oral masseter and pterygoid release on the jaw joint in my mouth which was extremely painful but is also supposed to be very effective in knocking out headaches. But that didn't work for me either.

At any rate, that migraine lasted for 22 days. Thereabouts. And I had a couple days break before it started up again. So does that really even count? I have no idea.
But it was pretty much hell. And I gained about 10 pounds in that month's time because I barely moved at all and it was so so horrible.
I'll tell the rest of the story with what's happened with those Drs (and more) in another post. Phew!

Sunday, January 12, 2014

what I believe

I want to say first and foremost that this is not a post about gay marriage. So please don't make it about that.
Nor is it really about religion. This is not about debate, or proselytising or converting. I really don't care right now what you think or where you stand and I am not going to tell you right now what I think. About anything. This isn't about any of it. I've just been thinking about this a lot lately, as the result of many accumulating experiences, and I just need to get this out.

What this is about is kindness, respect, and compassion. Always.
Always.

I will tell you that what I believe is that everyone is deserving of respect no matter what. (Ok, unless they are hurting or somehow abusing people or animals. But, other than that...)

 I believe that the most good can come from approaching you at the table and sitting with you at your side of the table and trying to understand your point of view.

 I believe that curiosity and wanting to understand why someone thinks the way they do and how they came to think that way is more beneficial than shoving my point of view down their throat. Understanding. When's the last time we tried to really understand someone else whose thoughts are completely different or even opposing our own?  Have we ever tried to do it? Are we so afraid that we will change our view that we can't even entertain their viewpoint? Here's the secret: they will never be able to convince us just by argument. So don't be afraid to be quiet and listen. And the other secret: we will never be able to convince them. So be quiet and listen.

I believe that harshly criticizing, belittling, minimizing, or making fun of someone's deeply held convictions or beliefs is not respectful. And that there are ways to disagree, discuss and debate without doing those things. I know it's possible.

I know there is kind of a platitude out there that we "choose to be offended" but I don't buy into it. It takes responsibility off of the speaker to say whatever they choose, offensive or not. But that's not true. Words matter. What you say and the way you say it, matters. We choose what we say. Sometimes we make mistakes in those choices. I know I do and I regret plenty of them. But we learn from them and we try to do better. If anyone has ever felt like I am not listening to their point of view or that I have been offensive, please let me know. I would like to reconcile that. I'm serious.

I believe we matter and words are important. I'm a word person. This is something that is important to me.
You matter and the way you speak matters.
That's what I believe.

And finally, I am committed to removing people from my life who do not consistently treat me with kindness, respect and compassion.  There are no excuses.

(PS - the facebook page TBK (To Be Kind) is one of my favorites and definitely worth looking at. I believe in it.)  :)

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