Tuesday, December 5, 2017

Update on belly

Long angry frustrated rant short...a few weeks back I had a flexible sigmoidoscopy and my Pancreatic Specialist did not find that I had microscopic cholitis. I got my test results with the note, “...results are negative. If symptoms continue, or get worse. Contact my office.”

Okay, what the fuck do I have to do to get a doctor who has a little persistence? I do not expect to get House, for fucks sake, but I do expect someone to at least follow through on what they say they are going to do. On our first appointment I told him my symptoms; that I’ve been having transient symptoms since my Whipple in 2003, but that they’d ratcheted up in May. I’ve lost 20 pounds since July without trying...yeah, that’s AWESOME if you’re trying, and seriously I would by lying if I didn’t look in the mirror at times and say “Looking good in those jeans, Sweetie!” But when you aren’t trying and no matter what you eat, it goes straight through you and makes you feel like you alternately are going to throw up, or you’re being stabbed in the gut and poisoned at the same time, it’s shall we say...disconcerting.

So at our last office visit I told him three things:
  1. My symptoms are better and the weight loss had seemed to slow, but not stop.
  2. I was still having some symptoms every day.
  3. I do not eat during the day because of those symptoms, so I’m really controlling symptoms with fasting as much as with my diet and Creon.
He had me do a test on my way out that showed that my pancreatic enzymes had fallen, even though I had Creon on board from that morning’s breakfast about 90 minutes earlier, and of course had taken it the day before at all meals. That was when he brought up EPI. However, I did not know (since it was brought up in an email) if it was a diagnosis or a “it might be” so I was confused.

In fact, I just made the mistake of eating some nuts because I’m hungry, and I can feel symptoms starting. Darn it!! No, nuts are not something I shouldn’t eat. It’s just that any food kicks off at least minor symptoms.

So does that sound like things are good? I think he hung on the first one. Better is not fixed. Better does not mean I’m satisfied. It is like, “Well it was flames but now it’s just embers.”

So I went back to my GI PA.C. Who is not a pancreatic specialist, but at least listens to me. She is a GI specialist. I’m done with doctors who don’t listen and I’m tired of pain.

So she is going to get his records, even though I always ask to have them sent to her and my doctor there (who is another “I fixed you, right?” Doctor who I don’t like going to....really I never have this attitude, but these two are just....). 

She said that if I respond to the Creon and my enzymes are where they are, that’s how they determine EPI, so I do have it. (Exocrine Pancreatic Insufficiency or the fact that my pancreas is slowly losing its ability to make digestive enzymes so that makes me sick because my body isn’t digesting its food). It isn’t fatal or anything, just uncomfortable and something I have to manage. She’s going to also see if there is anything else. She said I can take Imodium before meals when I’m out to try to head off the symptoms. I grabbed them, or thought I did, today...but it was something else. LOL. Dumbass. 

She looked at my weight, and was alarmed that I had lost 10 pounds in the month since I’d seen her. Yeah! It is alarming, isn’t it!? Looking like an extra in Coco alarms me too! Okay, it’s not THAT bad. I fall just on the line between “healthy” and “underweight” and somehow I still have back fat. 

It is so strange to feel like my life has been taken over by doctors and pain, when it used to be all I thought about and talked about outside of my teaching was running and exercise and how much it enriched and enhanced my life. Now I am so proud if I get even a two mile run in because I feel so crummy all the time. I felt like I was getting used to the brain pain because it has been almost six years. It’s not better, and in some ways it’s worse. But this EPI thing? I just don’t get it. 

Warning: Whiny rant ahead...

I don’t get it. I take such good care of myself. Not to the point of Gwyneth Paltrow steam cleaning my clam and making my own organic linens, perfect so you want to slap me, but I take care of myself. I eat mostly healthy food (Lucky Charms is a food group, so shut up) and I exercise. I lost the weight that as unhealthy. I chose a career path that was/is a path of giving/social service and as a teacher, I give my heart and soul to my kids. Just today I told three kids, individually, how much I care about his success and how I will always be there for him. I meant every single word. You can ask my best friend, who is also a former student. I have their backs in thick and thin. I work within the community through a non-profit to raise money for local people or families in need and take NO profit from it myself, ever. I don’t want riches or fame. I just wanted a simple life where I could make at least a small difference. I still have goals and ambitions I want to meet, but I have been hit with two chronic conditions that make me feel like shit most of the time and I just don’t get it. I don’t understand why. I don’t get the lesson. I don’t get what I am supposed to learn from this or how it’s supposed to mold me into the right vessel or person. I believe things happen for a reason. When I had my original tumor in my pancreas and they found it SO early so I never had to have chemo or anything, just my Whipple (which was no picnic, but still) I felt like there was a purpose...that was why I embraced health and fitness so strongly because I learned what it felt like to be so sick I literally was afraid to close my eyes to sleep at one point. I was afraid I would wake up again. 

But the brain hemorrhage and never ending headaches, confusion, frustration? Maybe it’s to give me empathy for my students who struggle. I don’t get the digestive issue. I know why it’s happened. Most people with a Whipple end up with it, but why? It just frustrates me so much. It’s so hard to accept that it’s just “sucks to be you!” And I have to suffer with feeling sick all the time when I’d rather be out running or teaching a boot camp class while someone else is perfectly happy being a complete couch potato, not taking care of his or herself, and they remain perfectly healthy. I am not saying they “deserve” it more, but I am saying that it would make more sense for a sedentary couch potato to be stricken with these illnesses, so it is hard not to feel “why me” sometimes. Not only does it keep me from doing things that enrich my life, but it is keeping me from doing things that help others, and that hurts the most.

Next year I’m sure I’ll be teaching half time, so less kids will be impacted. I’ve cut down on teaching my fitness classes and personal training one on one. I can’t handle it. As it is, I can’t handle what I do have and cry almost weekly because I’m so overwhelmed. I can’t bring myself to give it up, yet, because it was a dream of mine and I can’t let that dream die. I worked hard for it. But next year, I’ll probably have to drop that too because it’s a business that costs us money. I have goals that include, very seriously, running for public office but can I do that with two chronic conditions that can take me down at any time? I don’t know. So do I even consider it? One or the other, maybe, but both? It just feels so hopeless like I shouldn’t even bother to make plans. 

Then when I think that way I feel like “But others go all over the place and talk to Congress and shit, why can’t you be someone like that?” And I feel pressure because I’m not some Hallmark Story of Wonder Womanness running across a finish line breaking the tape, or even stumbling across the finish line, with a Nobel Prize in one hand and a perfectly brined brisket in the other. I’m just me and I’m not amazing. I’m in pain most of the time and I only want to go back to being normal me full of energy with tons of dreams left for my life that now just seem fucking impossible. 

Wednesday, September 13, 2017

I can't do this...

Only day three and I haven't left on time yet. Three migraines, three IBS attacks, one big fat breakdown complete with ugly cry tonight and one on the first day. Things that shouldn't have happened with my class did, and my computers, which were all in perfect working order when I left in the summer, half were not working when I returned. I have no idea why. I literally reinstalled every single one and personally tested them myself before I left so they would be perfectly ready to go when I came in.

Some of the other teachers who wanted to use computers this week didn't come and check to make sure they were working, so of course that became my emergency. Yes, I am tech support but that does not put more hours in my day. I still only have 24, and I still have to go to staff meetings, and I can't suddenly whip up the power to be in three places at once. People don't read emails I send, but instead come to ask me for information I've already sent. I want to be patient, but at the same time while I'm trying to reinstall computers who decided to take a crap in MY room over the summer (in a class completely dedicated to computers, where I did make sure they were working before I left for the summer so had a very fair assumption that they would be working when I returned) I'm being torn away to fix other people's computers too.

What we need is tech help to open school, but we don't get much of that.

I'm not sure how much longer I can do this, run a business, and try to figure out how to keep a house from being condemned, find something I can eat that doesn't keep me doubled over in pain, and not kill one husband and six dogs. I just hate how sometimes I just feel like once the school year starts I have so few moments of happiness because it's just run run run, go go go and take my one day a week to sleep in on Sunday and then feel guilty if I'm not "doing" something.

I haven't exercised yet this week because I can't get home on time, but I did get in acupuncture yesterday and that 45 minutes with needles in my belly felt amazing.

Sorry to bitch but I am so fucking exhausted. I hate how everything was so good until my brain broke and now I can't keep up with what I used to do, but everyone still expects me to, including me. No choice. I've been so stressed out leading up to school and I even reached out to a support group and no one replied.

I want to apologize for having a pity party but I'm not going to. Goddamn it I'm tired. I'm tired of not sleeping (although last night I did first time this week). I'm tired of coming home and wanting to sleep. I'm tired of making dinner while Roy watches TV, even though maybe it's fair because I used to do that while he made dinner. I'm tired of feeling like I'm being targeted at work by one of our administrators, which has never EVER happened to me in my 23 years of teaching. (Someone else pointed it out to me, and now that I see it, I see it and it makes me angry because it's impacting the kids more than me and it's not right, small minded cunt faced bitch.)

All I want out of life is to leave a legacy, but I couldn't have kids so I teach. Now I'm coming to the end of my career. I can feel it. What will I be then? Pointless I guess. I can't set new goals, it feels like, because everything is up in this stupid limbo. If I stop working, we're poor. If I keep working, I'm so exhausted I can't enjoy life except during vacations. Then I resent the fact that this is it, enjoy these few days you have because the dark days come back. Don't get me wrong, I find JOY in my job, but by the end of the day I am so completely exhausted there is nothing left for me, for my husband, for my friends. That's not right.

I just feel lost because I don't know how to be this person. I'm either super go getter or nothing and I don't want to be nothing, but I can't be who I was before. I don't know how to find that in between state because that in between state just feels boring to me. I don't want to be boring. I might as well not even be.

Saturday, September 2, 2017

Worried about MCM

So excited! I booked us an AirBNB for MCM!! It’s right in the heart of DC. I was reading the course map and can’t wait!!!

But at the same time, I am super worried. I haven’t run a long run since last month...well a few weeks ago and that was 13 miles. All due to these IBS like symptoms. I just got in from running eight miles. We are a month out from this marathon and I am not ready! I haven’t been this undertrained for a marathon ever.

I don’t know how to fuel because right now I’m still on the low FODMAP diet. I don’ t know how to carbo load because right now I’m eating like I’m anorexic, and I’m not trying to be funny. Because I’ve had such a bad reaction to food the last three months every time I eat, I am afraid to eat so I find I will make food and then not eat it. Or I’ll eat just 1/4 of it because I’m afraid too much will cause issues.

I’m excited to go to DC, but what will I eat there? I know this is what all people who deal with this go through at first, and I will get it sorted out, but it sure does cause initial anxiety!  As if the brain pain wasn’t bad enough!

On a good note, I did just have a pretty good eight mile run. I used some of the gummy bears I made. I took two pieces before I left and right now I have no stomach upset, just a gnawing (which I think is the typical munchies). These are made with GG#4 clarified budder (so fanceeeeeee). No psychoactive properties at all, and about 30 minutes in a I felt good. I’ll take them earlier next week.

So hey, that kind of makes me feel a little better about MCM! Maybe I’ll try a 15-16 miler tomorrow!

Tuesday, August 29, 2017

Sometimes I HATE being a woman

I woke up this morning determined to get some more exercise in today. We did kayak yesterday, which was good and I wanted to hike today. However Roy needed to take his mom to see her sister, and I have a dinner date tonight, so I decided to go ahead and get a run in. I wasn’t feeling great, so I medicated to eat breakfast. To explain, with this current situation I often have no appetite which means I will go without eating all day. Yesterday I ate breakfast, lunch and that was it. Before bed I felt like I should eat something, tried 1/3 of a banana but after one bite felt like throwing up. So this morning I woke up with no energy, feeling nauseated. I decided I was having nothing of this, so I took one hit of White Rhino. Within 15 minutes I was hungry so I had my one cup of cheerios, cheated with half a ripe peach (it came in our CSA box, which I should cancel now because I can’t eat most of it) and I didn’t want to just throw it away, and coffee with coconut milk creamer. I felt much better so saddled Flik up for a run.

I decided that since it was mid-morning I would head out for a run on the new Ebey Waterfront Trail. I haven’t been out there alone since we rehomed Pogie. One of the reasons we took her in was because I needed a larger dog for safety. Even though Flik will protect me, the truth is he is not intimidating. He will bite someone coming for me, but a swift kick could really hurt him. A larger dog makes someone think twice.

So I head down and I’m relieved to see that there is trail work being done in the area where there are usually indigent people sleeping, using drugs and alcohol, and sometimes doing other things. Yay! That makes me feel safer. As I’m running I see another runner ahead of me with a dog off leash. It’s a big dog, but my hope is that he’s going to stay far enough ahead of me that he’ll turn and see me with enough time to recall his dog (hoping he has good recall) and leash him.

I notice, though, that the gap is closing and he’s not wearing running gear. Then he pulls off the trail and I hope to just run past him, as I run past, I notice he’s urinating and then the dog comes running at us. I’m trying to keep Flik from attacking the dog, who really does seem friendly enough and just wants to say hi (but Flik is not always dog friendly and I don’t want him to get hurt). That’s when I realize this isn’t a runner, or someone out for a walk, but an older man who is obviously also indigent.

Now don’t get me wrong. I am not automatically afraid of indigent people. In fact, I have a big heart for them. He did not act in any way like he wanted to hurt me. He was startled (probably because he was holding his dick) and he apologized and told me he was jogging. I acted pretty tough (I felt) and was nice and just told him my dog was not friendly, and it was fine.

But it wasn’t. It scared me. It made me realize that as a woman runner, I am not safe running alone out there. I love that trail and because I am a woman and even though I can run, even though I lift weights, if a man wanted to hurt me Flik wouldn’t be able to do much. I tried to run off to put as much distance between us and that man as I could and push my fear away, but my insides turned to liquid, of course my digestive issues came up and I started cramping, feeling nauseaous, and finally had to stop and walk. I kind of walked/jogged for fear of him catching up to me, but I was so afraid I’d -well- mess myself because of how my insides felt. I realized that if he was a bad man, I had run myself to a dead end.

Blessedly about ten minutes later a police officer on a bike came by. I saw him and just started saying “Thank you Jesus. Thank you! Thank you!” Under my breath. Then you know how sometimes when a crisis is over and you held it together and suddenly you’re not holding it any more? Tears sprung to my eyes and I had an asthma attack. I get exercise induced asthma VERY rarely (like maybe once a year) and FUN here it came! So I stopped to walk and regulate my breathing. The officer rode down to the end of the trail and I am thinking, “Do I flag him down? Do I not? Am I overreacting?” It calmed enough that I was able to continue by the time he got back, but I did sit for 20 minutes to calm everything before I ran again. I knew Flik would tell me if anyone was coming and hell, I could jump into the slough if someone came, or over the barrier and run into the neighborhood through water (tide was out) carrying him if I had to.

God dammit it just isn’t fair that women have to worry about going places because we have a few men in this society that can’t control themselves around women. I miss Pogie and the protection and camaraderie I shared with her. I miss feeling safe. I feel like now I can’t run down there alone and while I love to run with friends, I also sometimes need to be in my own headspace. I used to run trials alone with Wiley and because he looked like a red German shepherd, no one bothered me. We were so in sync. I could take him out on a summer morning, or weekend, or break and we’d go run for hours. Roy never worried because he know I had Wiles with me to protect me. Now I just feel like a weak, sitting duck. Being so weak right now doesn’t help either. I’m down to 116 this morning, which most people would think is “yay” but that’s actually 3 pounds since Friday. Not yay.

On the good front, I actually felt really good on the run, and my symptoms left me until the last mile. I did have some butt clenching time on the way back but oh well. I feel like I’ll get that in control. I’m still feeling sad, but glad I got the run in. Flik was too! He’s such a good boy and I love running with him. Too bad he isn’t like 50 pounds heavier!

Monday, August 28, 2017

I wish

...a lot of things in my life. One of them is that I wish I kept up with this blog more. I wish I had wonderful, witty and motivating things to say. In real life, I’m actually very motivating. I am a personal trainer and running coach and I help people feel good about themselves.

Unfortunately I do not feel very good about myself lately. It’s not a “I hate myself thing” at all. I don’t hate myself thing. I’ve just not felt good for a long time. It’s the head, but it’s more than the head.

In 2003 I had a Whipple Procedure to remove a cancerous (pre-cancerous, it was in-situ) tumor from my pancreas. Since then I’ve had on again off again digestive issues that have been annoying and painful but manageable. I realize looking back that it’s been getting worse over the last two years with a lot of issues that are embarrassing that people who deal with these kinds of issues will relate to. I’ve struggled to run long distances with severe stomach cramps and diarrhea. I’ve had problems fueling on my long runs. Stuff I used to be able to eat without issue suddenly causes problems.

In mid-May or so I had an attack, as I do, of stomach issues...bloating, cramping, stomach pain, nausea (two different types of pain), diarrhea, loss of appetite. When I get this, every time I eat I’ll feel better but then within five minutes I’ll start having symptoms. Usually these go away within 2-3 days but this time it didn’t. At first it was annoying, but I could ignore it. But as days turned into weeks and weeks into months it got worse and worse. I started losing weight and not wanting to eat. I went from five meals a day (small meals) to three to two to one.

In August I finally had a colonoscopy and endoscopy. I was hoping that they’d find something and if not, at least having the procedure would “reset” things (like a cleanse, although I do not necessarily believe in them) and I’d feel better. Not only did they not find anything at all, but it didn’t reset anything. In fact, it’s only been worse.

I’ve lost 12 pounds since May. My exercise has gone from daily to none because I’m so weak. Okay, I am still trying to get something in if I can. I did kayak today but was sad when, after a single mile I had to turn back because I was exhausted.

At first I was handling it with marijuana, which helps the symptoms quite a bit. But they’ve gotten to the point where it soothes them but doesn’t take them away. It helps with appetite but I’m starting to get afraid of food because even if it doesn’t hurt now it will tomorrow.

I have started a low FODMAP diet. FODMAPs are short chained carbohydrates that most people don’t absorb well, and some don’t absorb at all. If you don’t absorb them, they ferment in your large intestine and cause symptoms of IBS and other intestinal issues. I am actually starting to feel better but it feels like 2 steps forward 2 steps back and I’m not sure if I’m doing it right. I ate something yesterday or the day before that reacted with me, so I’ve had two no fun days. However, the day before yesterday I felt good enough to go for a run and that was AWESOME!

Other things this summer...one of my dogs tried to kill another dog. We had to rehome the killer Dog. Ugh. I feel like one of those people who always has a sad story to tell, but the fact is, August has sucked. Not “My house is underwater in Houston” sucks, but “It’s not been the best month” sucks. I miss Pogie so much. I don’t blame her. She’s a dog and for some reason she just was set off by Lucy and I blame myself. We did the right thing by rehoming her but I love her and I miss her, and even typing this tears me up. Lucy is fine. She is going to live and acts like nothing ever happened. She has a huge scar from her surgery, and we have an empty bank account (literally), but payday is Thursday and it’s only money. Money can’t buy you love, but it can pay to save your dog’s life and puppy kisses are like love so there.

We did make the most of not having money, though. We’ve had an awesome month despite that issue and money has come out of the woodwork when we’ve needed it, Praise the Lord.

Head has been better in August than in July, when the first from BC were really impacting it. The stomach and intestinal cramps can send it soaring, but now that they’re a little better they don’t seem to be setting it off as bad.

By the way, the second procedure did not work at all on my brain. It was very disappointing. So for now, I’m not going to do it again. There is a new supplement I will be taking once payday comes called Bosswellia and there is also some new pain thing she wants me to try. It has a ton of good reviews and I feel like if it doesn’t work for me, it probably will for Roy! So that’s hopeful for him. There is also something that is not yet FDA approved for my brain pain but it is for Cluster Headaches. I tried it in the office and it did give me relief. Dr. M feels it will be available within six months to a year.

So there are some hopeful things on the horizon.

Tuesday, May 23, 2017

I'm sad

I'm sad because my head hurts and I'm so tired of it. I don't want to keep trying to find a cure for it. I want to quit. I want to stop being in pain. I want to stop spending money on this. I want to live a quiet and happy life, well maybe not quiet. I want my old life back where we did fun things and went places and explored and I never worried about pain. I don't deserve this. I worked so hard to be healthy and this is what I got for it?

I know no one deserves pain and I know I'm not handling it graciously. I still don't understand the lesson 5.5 years later. Why did this happen to me? What purpose did it serve? What lesson is there in it? What do I take away from this experience? How is it helping others? How does it work through me to give to others?

I don't know where to go from here and I have no one to talk to about it. I feel so alone.

Thursday, May 18, 2017

Five Weeks Post SPG Radio Frequency Ablation

So tomorrow is the second side procedure. I'm not looking forward to it At All because it hurts so much. I know it will only be about half hour, but just thinking about it is spiking my current headache. I can do it, though.

So how are things five weeks post-hence?

Deep Breath.

It actually took me about three weeks to say out loud that I don't think the first procedure worked very well at all. I told Roy and just cried. Then a week later I shared with a few friends. I saw a little relief, definitely, so I don't think it was a complete failure. But did I see the improvement I thought I'd see?


Not even close.

Most of the time my headache is the same as it always was. Maybe once a week it'll be worse on the left than the right. My suspicion is that since our weather has been so bad lately (literally changing at least once a day, often two or three times and weather change hits me hardest) that the right probably IS a little better but it's hard to tell with quick spikes when the pain level goes quickly from say a level 4 to a level 6. I think on better days I'm not really focusing on a slight pain relief on the right and when it does increase so much, it kind of hits me so hard that at that point if one side is only a little better, it's not enough to make a difference in that scenario.

So why am I doing the second side? I guess my hope is that either that side will be better or more receptive (maybe they missed the nerve or that is like a super nerve), or more likely the correlation of the two improvements together will be more than additive. Maybe both together will signal a greater feeling of relief than trying to add a 4 headache to a 6 headache and expecting to feel any dramatic sense of pain relief. After all, that really is still 75% of my original pain level. Wow, actually typing that out makes me feel better! Only a 25% reduction of pain makes a little more sense because that would be really hard to feel most of the time, if you think about it. Pain is hard to quantify sometimes. It's like you know when you feel it and it HURTS, and you know when you can ignore it, but if you think about it "Yeah, it's still there".

So here is hoping for better results tomorrow.

Sunday, April 30, 2017

So it's been a week

Really, a week and two days since I have my low frequency radio frequency ablation of the sphenopalatine ganglion nerve bundle. (Whew! Every time I type that it's a mouthful, or, uh, finger-ful.)

From what my doctor told me, I'd start noticing within six days. I tried not to hang my hat on that, but of course I did. The ONLY thing I'd noticed up to that point was that maybe Thursday (day six) my head hurt a tiny bit more on my left side than on my right (my block was done on the right).

By the way, my doctor allowed me to choose the side. I'd asked for my right since most of the time if one side is going to hurt worse, it will be my right. I figured I could tell better.

So today is eight days post. It started out a nice day so we took the dogs for a walk, which is an ordeal in itself as we have seven dogs. We decided to start with the five tiny dogs (three chihuahua mixes, a mini-pin foster, and a yorkie foster). We took them down to the park for the Best Day Ever (according to them). As we were out, the wind started up.

Wind and I are bitter enemies. Oh sure. As children we played together; "Wizard of Oz" and I used to love when the wind sang to me. However, once I had my brain hemorrhage it has become nothing more than a torture demon. Whenever it shows up it brings Spidey with it to wring out the worst of the worst headaches!

We went home and swapped out for the big dogs. Again, Best Day Ever! The wind kept on it's torture and as expected, Spidey made an entrance.

For those who are here just wanting to know about the RFA SPG block, you have to sit through my dog stories, bad jokes, and now you're wondering who the hell Spidey is. Well, Spidey is my headache. Since my brain hemorrhage or stroke was a Subarachnoid Hemorrhage and arachnoid sounds similar to arachnid, I have always referred to bad head pain as Spidey.

So Spidey started torturing me, and I decided to pay attention to how the pain was developing since it was getting too windy to really talk, plus one year old Pogie (border collie, lab mix who is really named Rogue, and is much more used to running with me, than this walking shit) was pulling me well ahead of Roy and 11 year old Dash (lab, pit bull mix who is not used to even this walking shit, and is much heavier and slower, but was still having the Best Day Ever).

As the pain ramped up:

Right side: 3-4-5 and stopped
Left side: 3-4-5-6-7->8 (ready to cry by the time we got home)

So...I'm maybe starting to feel like it might have worked, but am still hesitant to get my hopes up.

For one thing, there were still a few spikes of pain on the right. I do think the nerve is still dying, but even right now the right is better.

Plus I'm just worried if I get them up too high and it's just a fluke I'll be so disappointed.

But if this is working and even if the best I get is days that don't go above five, that would be much better. I really want complete relief most days, though. I know I can't be guaranteed that, but it sure would be nice.

Monday, April 24, 2017

Three Days Post RF Ablation SPG Block WHEEEEEE!

Before I had my radio frequency ablation sphenopalatine ganglion block expealidocious, I looked everywhere for information on it and could not find it. None. Nada. Okay, not none, but I couldn't find anything from real people. I could find advertisements from pain clinics, and a few short articles, some study abstracts, and I dug deep and found a fantastic description complete with cadaver photos from The Cleveland Clinic. But I did not find any people who said, "This is what happens, and this is how I felt when it happened, and here is my outcome."

So I'm trying to document it in hopes someone else might stumble upon this someday and find it helpful.

So after the procedure I felt pretty good the rest of the day. My jaw was sore, and cheek was swollen, but overall I felt pretty good. Towards the end of the day my headache came back about a level 5 or 6. We were having a windstorm, so I wasn't surprised. I was also told that I wouldn't feel relief right away; that it would take a few days.

Saturday wasn't too bad, but I wasn't sure if it was the procedure or just a relatively good day as the weather was pretty nice. However as the day went on, the head ramped up and it was bilateral, so no love.

Sunday was amazing, but it was due to running. I ran a half marathon with my lovely running group. I wish I could bottle running. I wouldn't have to go through all of this! During my run I felt amazing, all the way up until the last half hour or so, but the weather really changed about that time. The rest of the day got a lot worse.

So here we are Monday. My bruising on my face is down and the swelling is almost gone. I do have a black eye, which is sort of amusing. It's not horrible, but my husband keeps joking that there is "more where that came from!" If you knew my husband, you'd get why that's funny. He is afraid of spiders and is a big teddy bear of a guy.

No pain relief, though. I did do a TON of reading on other ablations last night and it sounds like the nerves take from 6 days to sometimes up to weeks to completely stop transmitting pain signals, so I am honestly not concerned.

I did read a lot of horror stories of more pain from other ablations (not SPG, back or neck related). So far I wouldn't say more pain. Maybe more tinnitus. I'm not 100% positive, but tonight my tinnitus is really loud! Not sure if it's causation or correlation.

Friday, April 21, 2017

Radio Ablation Sphenopalatine Ganglion Block, My Experience

So I had the procedure today and if we isolate it only to the actual procedure, IT SUCKED! 

I like to share my medical procedures. No, not because I'm sick AF, but because after I had my Subarachnoid Hemorrhage I couldn't find any information on what I was going through. I could find a lot of information on what had just happened to me, and I had a care sheet and a sell by date from the doctor. But that was it. (Sell by date was when I thought All This Will Be Done and I Shall Be Whole Again!) So when I started feeling like water was being poured over my brain, and it hurt to be hugged, and I couldn't remember how to "salad" so I started crying, and I could run but walking across the room I'd fall down, and my memory was so bad I had to have my life run by a bitch called Siri...I felt left alone with nobody to talk to!! When I did find a resource here or there that said, "what you are feeling is normal after an SAH" I would cry tears of relief.

So that being said...

Here is my experience today with my first High Frequency Radio Ablation Sphenopalatine Ganglion Nerve Block (that's a mouthful in itself). 

Why: SAH in 2012 and I have had a headache every moment since then with the exception of when I have had SPG blocks. The Lidocaine blocks worked, but not as long as it did for most people. However it did tell us we were in the right spot.

The only other time I'm painfree for any period of time (besides my dreams) is when I run marathons, usually about 90 minutes into the run it fades away and it'll last until the end if I'm fast (which isn't often), or for 2.5-3 hours and then fade back in.

I arrived at the UW Pain Clinic at 8:00 (on time, thanks to Jacquie being early to pick me up, and giving up her coffee). They checked me in, did all the vitals, asked all the questions, commented on the tattoos, I changed into a gown, but was able to keep my bra, pants, and even shoes and socks on.

The Nurse started an IV. I was given Versed for sedation. I do believe some use Valium, but I had a Valium "incident" in the hospital after a surgery, so they marked it an allergy.

My doctor came in and explained the procedure fully. He is very clear. I appreciate that. He told me there are a lot of nerves in that area so before they could give me anesthesia, they would have to find the right nerve and it would be uncomfortable. He would do this by sending a pulse down each nerve and wherever I felt a tingling would determine which nerve they were hitting. They would need to have me with all of my nerves fully awake to be able to feel all sensations. Once I felt it in my nose, close to the bridge, then they would have the right spot. At that point I would get anesthesia (general, so I'd be awake) and they would send a high frequency radio wave down through the probe (or another, I'm not sure) and it would damage the nerve. Over the next 2-4 weeks the nerve should die and regrow.  

I went into the procedure room and got up onto a narrow table. It has to be narrow so the CT Orbiter can orbit your head during the procedure. A pillow was under my shoulders so my head was well back (so be aware, if you have neck pain. Another pillow was under my knees, maybe for comfort? If so, it was the only bit of it. 

An oxygen cannula was placed in my nose. For some reason all I could think was, "It feels and smells like Barbie just stuffed her feet up my nose" and then I wanted to giggle. I hadn't even had the Versed yet!! Yesterday WAS 4/20, but still. I was completely sober!

The doctor came in and positioned my head with an x-ray, then they ran a test CT scan. Once it was clarified that I was properly positioned my head was taped down so it wouldn't move during the procedure.

Dr. Chu washed my face very well, four times with an alcohol dish scrubber. Then he palpated all up and down the Zygomatic Arch and made me a marked woman along the arch. They checked placement one more time.

That's when the fun began. So from what I understand, since I only experienced the sensations and couldn't see what was happening, a hollow needle was fed through the infrazygomatic arch, which is a tiny little hole. Mine is 17 mm in diameter. Most necklaces are 18 mm in diameter, so that gives you some insight into the size. They do this slowly and advance it towards the right lateral (in my case) sphenopalatine ganglion nerve bundle. (That isn't the needle type, it's part of a machine, I think.) It was sort of painful, but not horrible. 

Once it is in, the probe is sent through. That's when, for me, it got painful. Now I have a very VERY high tolerance to pain, so I was able to keep still. It was a challenge. I can't really tell how long it took, but it felt like it took a long time to find the right nerve. I know that we went back and forth on a sort of "can you hear me now" game, except it was "where do you feel that?" "In my cheek" Okay now it's in the roof of my mouth, roof of my mouth, closer to nose" etc. Finally after what felt like forever, and more than a few silent tears, my nose really tingled. It was close to the top, but it wasn't the tippy top (between brows) so I hope it was right. Dr. Chu said it was according to the CT. 

I think the pain was maybe from the moving of the tube/needle around in the infrazygomaticarch. It's SO small and it still feels bruised in that area. When the charge was put through, it would stop hurting and it would just make my face feel tingly. I think the pain stopping was because the tube wasn't moving any more. Plus it felt like the same kind of pain as when I had the same procedure but with Lidocaine, only it lasted a lot longer and happened more than once. Then after the pain stopped, the tingling would start.

After proper location was determined, I was given anesthesia; I think Fentanyl. The pain was immediately gone, but I did feel some double vision come on for a few minutes. Fortunately it cleared. I had that for awhile after one procedure and it is NOT fun. Just pressure after the the pain left, and shortly after that he was done. 

Now I have a feeling at some  point I fell asleep because the radiologist said something. I don't know when, but I hope it wasn't when I was needed because I actually can fall asleep while in pain as a coping mechanism. However, it felt like once they did the radio frequency part it was over. I might have dozed, though. 

After they gave me time to sort of recovery, but in the same room and only a few minutes. They took the Barbie feet out of my nose, and untaped my head. They took all the probes out and disconnected the BP cuff and pulsoxometer. They tried to help me down, but I thought I was okay and almost fell. Ha! Then they wheeled me to the recovery area, which is just a chair. I had my BP taken again and it was 80 over 36, which freaked the nurse out. She had me sit back and uncross my legs and then it went up to 100/56 which is more normal for me. At one point the heart rate alarm kept going off too but Jacquie and I had told the nurse anesthesiologist that we were marathoners, so she just let them know not to be concerned. Love that low heart rate!

So how do I feel now? Well, I've been typing this for over seven hours, but it hasn't taken this long. My fave really hurt a lot, but my head does feel better. At least right now it does. However, the other side of my head isn't very bad at all, so it might just be because we've had a nice day and tomorrow is going to be a nice day...or because I medicated as soon as I got home, and have remained thus so all afternoon. Or both. Or all. Or either. Or none.

My face is swollen on my right side and it hurts to touch. My teeth hurt because it really felt like they were being pushed out (my molars) from the inside out. It hurts to eat hard food on that side, but it isn't like I had to eat pudding. I had leftover pot roast, potatoes, and carrots for dinner but I did chew the meat on my left side. I was super tired when I got home, but I took two dogs for a 1.5 mile walk and felt a little better. I never did take a nap. Now I had HOPED to go for a run, but nope. Head hurt too much. So nothing impressive about walking the dogs to the park. 

So that was my day. It kind of sucked, but even if it only works for six months it will be worth it. I hope it does. I just want my old life back.

Tuesday, April 11, 2017

Ten Days to Relief! (ihope)

It's April 11! I can't believe it's April 11! On April 21 I get to have my first SPG High Frequency Block. For some reason I always think of a radio when I type that...like they're going to implant a radio in my brain.

Frankly, I don't know what I'm typing. I have such a bad head right now. I can hardly stand it. Ondedesteron is on board but hasn't done anything yet and I just want to die. I hope this procedure works because if it doesn't I just don't know what to do.

Why can't I just accept this is my life now and move forward? I have a Facebook friend named Rico who had an aneurysm 13 years ago. He has headaches all day every day too and he's the most pleasant man I know. Not that I'm not a nice person, but he seems like he's accepted his life and I just can't.

I was seeing a therapist for awhile and that really helped, but she moved into a different situation. If the treatment doesn't work, I'll seek out another therapist.

I'm afraid the procedure won't work. I'm also afraid it will work. I want it to work. I really do, but it will change my life in a really good way and that scares me because then I have to remember how I lived before. That's super exciting, but scary at the same time.

But I'm really afraid if I get my hopes up and it doesn't work...even typing this makes me get a huge lump in my throat, I will be devastated. If it doesn't work, I don't think there's another option and then I will be the one saying "I've been living with this pain for 13 years".

If I make it that long...and this is where I say it isn't a cry for help, and it isn't right this minute, but I don't know how I'll handle facing a lifetime of this pain. It's just been so bad lately...so constant and unrelenting.

Tuesday, April 4, 2017

What's the News?

It's been forever because it feels like there is nothing to say when all you have to say is "My head hurts, and it still hurts. Have I mentioned my head hurts?"

I could call it brain pain or headaches or migraines. Regardless...it's pain and it's a pain in the mother fucking ass!

I guess there is a new development. I am getting a new procedure on April 21 called a Sphenopaltine Ganglion (SPG) Nerve Block using high frequency nerve ablation.

I've had two procedures where they used a needle to directly apply lidocaine to my Sphenopaltine Ganglion nerve bundle. They were SO painful, but it worked to take the pain away! Unfortunately like the nasal application, it didn't last long. The first time it lasted 32 hours, which was awesome! It was supposed to last 3-6 months, though. The second time it was only a few hours. To do this, they tape my head to a table and use a CT machine to watch as the doctor inserts a needle through my cheek, under the Zygomatic arch, and up to the SPG and release Lidocaine onto it. OMG it hurts SO bad!!

So that's basically what they'll do on the 21st, but only on one side. The other two procedures were to determine if the SPG is indeed where my pain is coming from. Since the Lidocaine worked, that tells us that we are on target. They will put a larger hollow needle through (I feel woozy just thinking about it) and then put a probe through and apply a high frequency to the nerves to damage them. The outcome should be that the nerve then shrivels up. It should regenerate as a healthy nerve that doesn't shoot off for no reason. If it still shoots off, I still should have at least 6-18 months of relief.

Five weeks later, I will get the second one if the first one works. I get bilateral headaches. What's interesting is that my official diagnosis is daily chronic migraine of unknown cause, but I don't think they are migraines. They have no migrainal characteristics. They are always on two sides. I don't get auras. I don't usually get sick and if I do get nausea it's due to pain level, not a migrainal misfire.

Sometimes I call them migraines just because I get tired of people thinking it's "just a headache".  There is a lady at work who I can't even mention if I'm having a bad day (mention it to her). The last few times I have, usually because she comments that I'm wearing sunglasses, she's said, "Oh yeah! I know! I have a headache too!"

Really? You know?

You have a headache too?

Do you?



That was with my inside voice.

Outwardly I just smiled, looked at her like, "Are you kidding me??" and walked off without saying anything.

Eat Well to Feel Well

So I've been pescatarian since summer of 2015. As a refresher, that means I eat all fruits and vegetables, dairy, eggs, and fish but no other forms of meat. No beef, pork, or chicken.

Welllllls...one of the problems with that is that the candy food group is big in there and it's also my biggest problem. I love candy. I love candy a lot. Candy is my downfall.

So, I have been pretty much clean eating for about 60-70% of my diet for about 2-3 years now. I am trying to do better. I'd like it to be more like 85% of my diet, but I can't get that candy out of there. I also want my meals to be more organized. Lunch is always super healthy. I have a salad with a variety of vegetables and half an avocado for good fats and protein.

Problem is, or was, on that very healthy diet I actually gained weight. I think it's because during this time I hit menopause and we have higher protein needs. Don't get me wrong, you can get all the protein you need on a pescatarian diet. However, I wasn't.

So, I decided two weeks ago to return to an omnivore diet. I had originally stopped eating meat to see if it would help with my headaches. Of course it didn't...nothing does, but I keep trying. I just didn't really miss meat. After awhile I did realize I missed sushi, so I added back fish. The rest was easy to resist, although I decided that if I wanted it I'd eat it.

So what happened in the last two weeks? Well, I decided part of the reason I didn't miss it was because my darling, sweet, wonderful husband is (don't tell him) a really boring cook. Not his fault! He just is fine with the same old food every week. So I was tired of it. I got an Instantpot and decided I'd do the cooking, which got no argument from him. I made some amazing meals that made great leftovers.

Not only that I lost four pounds and have had a bunch of compliments! I didn't even journal or anything, I had a friend tell me how good I looked on Saturday, plus Tuesday I'd been weighed at the doctor. The doctor's scale said 127, clothes and running shoes and jacket on, late afternoon. I'm a "nekkid as the day I was born" morning weigher. So I decided to step on the scale yesterday and 124.8! I was 129 last time I stepped on the scale, and after I had the flu I felt fluffier so avoided the scale.

So there you go...no longer vegetarian. Hope that doesn't disappoint anyone. If it does, oh well. I'm an adult and I've been feeding myself since I was two and I've been okay so far.