Thursday, June 30, 2011

Not quite ready

So, as I said in my last post, I was desperate to start school, drove with my Papi to Utah less than 10 days after surgery, and felt pretty clever sitting in class on Tuesday, the 21st. It was difficult--I had to drive up to the school parking lots with my handicap pass and limp around campus like an idiot, as people saw me limp out of my car but no cast. Occasionally I felt like lifting my shirt, pointing to my surgery incisions and saying, "See? See everyone? I'm NOT lazy, I HURT."

What was most pathetic is I almost always had to open doors with the handicap button, as the big glass and metal doors of a college campus were beyond my strength and pain tolerance. Then I'd have to limp into class, feeling about a hundred curious eyes, and fall into my seat. About fifteen minutes in, I'd have to take some sort of medication, usually for pain. My boyfriend says my pill box looks like something for an AIDS patient, and my friends joke I could open up my own pharmacy. I've sometimes have had people tell me, those close to me but who still have often failed to understand I actually have a few serious diseases, that I "should stop taking so many pills". I of course agree, but there is a little problem--I need them to live normally. As a biology nerd, I am pretty obsessed with nutrition and know that medications affect your body in many ways besides that intended; however, when medications change your quality life, lengthen it, and make it possible to do things you otherwise could not, you have to make a sacrifice and take a little poison. Yet, I digress, and I should save that opinion vat for another post! My point was simply to illustrate that even attending class was a struggle.

I sat, tried to take notes, but focus was hard. I hurt. I missed a class my first week, both times, because my first class took too much out of me. And as I was taking anatomy, I was expected to memorize endless body parts, which is taxing under normal circumstances, but impossible on pain medications. I studied for nine hours for my first anatomy quiz, and got a C. I never get a C. I wanted to stop taking the medications, and I weaned myself off them, but I ran into a barrier: I'm still in a ton of pain. On my knees, gasping, gagging, pain. And on top of that, I have started Lupron therapy and have been suffering bouts of extreme nausea and fevers. I've had days where I couldn't stomach a single thing.

Finally, it became clear. A week into my courses, I knew it was impossible. I couldn't do school right now, what was I thinking? I talked to my parents, and they agreed. They were fine with me being back in my college town, amongst friends and gaining strength to take care of myself and take care of my incompletes eventually. But doing school? Pretty much everyone who had been rooting for my recovery were frustrated by my determination to return. My doctor especially said he wasn't comfortable with me putting my body under so much strain.

So I've dropped all my classes, dropped out for the second time this year due to health problems. Problem is, sickness doesn't just suddenly stop. It takes time. My surgery recovery is going to be slow, because I was so incredibly inflamed by the time the doctors got in there. It's going to be awhile. Anyone who has an inflammatory disease knows what it's like, how long these things can take.

But on the bright side, because this crippling pain and severe bouts of sickness come and go so irregularly, I can't really engage in work or school, but I can occasionally really enjoy myself. I've camped, I swam at the water park, and I even drove go-karts. Of course I'm in a lot of pain after I do stuff like this, but the point is that if I pace myself, I can do these things. I've got to do things that are fun and social because it keeps me a little optimistic and happy.

It can be really easy to use sickness as a crutch and keep yourself secluded because you're tired. It could be so easy to sleep all the time and to stay in bed. I am tired. I'm still fighting this stuff and it makes me tired. But surprisingly, I just really want to look for the positive in this and use the 'free time' to my advantage. Maybe it sounds crazy, but I haven't had time to really bake in months and it was really fun to do that the other day. Even if I have to pace myself.

Really, if I had to complain about anything, it's that I'm tired of doctors telling me I'll feel better soon. I've heard that for years. Stop lying.

Thursday, June 23, 2011

Verrrrry Busy

Hello Everyone, I am so sorry it has been almost two weeks since my last post. It took over a week for me to feel well enough to sit up at a computer, and as soon as that happened, I was packing up for leaving for school. I thank everyone so much for their support, friendship, and prayers, it made such a difference, I really appreciate it all.

I am sorry to say that I am still knee-deep in craziness, and I cannot post much. I arrived for school on Sunday night, and did not have time to even to my required reading for my first two (and only) classes Tuesday. As I am behind and in serious need of studying, it's unfortunate that I am still on the mend. I get really tired and sore from walking around campus, and I need about 12 hours of sleep a day! Keep in mind I was super inflamed and sick for about three months, bedridden, so me going to classes and running errands is the pretty much the equivalent of a normal person suddenly diving into a triathlon! I am confident that so long as I take it slow though, and for once put my health before my schooling and social life, I will continue to get better.

This really wouldn't be possible without all the help from my friends, family, doctors, church, and even a couple of friendly strangers, so I just want to say thank you. I have never had to depend so much on others as I have these past few months, so I really want to say thank you from the bottom of my heart. This still isn't over, and I have to go through maybe a year of injection therapy to reach a normal life, but I really can't believe that that is now possible. When endometriosis gets severe like this, it really is an aggressive and awful disease. I mean, when the doctors start feeling sorry for you and calling it those kinds of names (severe case, aggressive case, uncommonly bad... yeah, that raises your spirits haha) you know you're in trouble. But this experience has taught me a lot and made me aware of how important friendships and family really are. So many friends showed me uncommon kindness and helpfulness. My parents especially rose to the occasion and made it possible for me to be where I am now. I hope I can return at least some of the many many favors bestowed on me.

As this isn't over and I still have things I'd like to say, I will be continuing this blog. I was surprised when many people told me they had been reading it--I honestly tried not to get my hopes up! But I'm really glad that it's piqued some interests and I'm excited to continue. I just have to get a little more grounded in my current situation before I can really start making some posts.

Before I go today though, I just want to pass on probably the most valuable bit of knowledge I believe I've learned from all of this: if you're sick, really sick, don't be stubborn and make it your own thing. Don't sacrifice help and support for privacy. Don't forgo an opportunity to teach others about what you're experiencing so you can sit back and be quiet. You never know what bodily struggles other people around you are having, and being open with your own often makes it easier for others to feel safe about doing so too. I don't mean give the nitty gritty details of every part of personal experience. There are more personal parts of this disease that I do not share here or even with friends. You're allowed privacy. But by keeping everything to yourself, I think it reinforces that stigma that sick people are weak people. By owning your struggles you are reaffirming that it's okay to have them. And you are also giving the people around you an invaluable opportunity to serve another human being in trouble. I often struggle with asking for help--I'm almost always willing to give it, but almost didn't know how to ask for it. And I believe a lot of people don't know how to ask for it. But we grow from serving others and it's a great opportunity to be able to serve someone you personally know. I feel I grew closer to a lot of friends, and I don't think I could have stayed as positive as I did without the support I received. Don't try to do everything on your own, is all I'm trying to say--because you're more likely to fail without help, and much much more likely to succeed with it.

Thank you so much, I hope I can write a bit more thoughtful and more organized post soon!--Ash

Monday, June 20, 2011

Saint Vincent's Extended Stay

This is my first post from a phone, so you will have to pardon the choppiness and brief nature of this post. This stems from me being in a truckload of abdominal pain and also that I seem to keep drifting off to sleep whenever I start typing on my phone... must... figghhhttttt.... zzzzzzz....*cough cough* mkay, I can do this!

So, for starters, my surgery yesterday ended up taking three hours. The complexities took an unexpected turn, and my doctor found some surprises. For example, I had a huge fybroid tumor on the outside of my uterus, which of course had to be removed. that left a hole to be sutured too. Also, all the organs were bright BRIGHT red! Super agitated and inflamed, so every time something got rubbed it was like torture. There were quite a few endometrial implants and a couple endometrial polyps too. And these were only the surprises on top of what already needed to be done. Not to mention everything else that was done.

Anyhow, because I am in extreme pain, and after staying two days in the hospital and my first night home, I still can't manage to sit up and do an actual post. It's not in my current ability. However, I wanted to inform people that despite things not going as smoothly as we had planned, things still went well and I am on the road to recovery. I'll post some real information and some pictures as soon as my pain is under some control. Thank you for thoughts and prayers.
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Friday, June 10, 2011

sample of photos

This is just the only photo I can put up for now. That white thing is the tumor they found, which is very very much likely, almost positively, benign. Those dark patches are endometrial implants. There were so many and they were so large! And my insides are so agitated and in pain, they should be pink, not lipstick red. I will post more photos and explanations probably Monday. I'm in a lot of pain still today and typing on my computer is too hard. Thanks again for support and prayers, enjoy being freaked by the picture.
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Wednesday, June 8, 2011

Pre-Surgery Jitters

In less than four hours I am heading off to the hospital for my laparoscopy for removal of endometrial implants, adhesions, a bilateral uterosacral nerve ablation, and possible removal of my right ovary. And the idea of 'resting before the big day' is laughable. I am tired, and few times I've almost drifted off to sleep, but then I remember something I need to do and I'm up.

Probably because this is it's last day to torment me, but my endometriosis pains have been awful today. Cramping, stinging, stabbing, tremors-down-the-legs awful. It's like it needs to get in all it's last moments before it's cleaned out. Luckily I have had some awesome friends to distract me from it all.

My old friend Jane* and I have been reconnecting these past few weeks and she came over for the whole evening. She was patient while I wandered aimlessly in my bedroom, trying to finish last minute cleaning and organizing so I don't have to stare at a messy room I can't clean while I'm recovering. And after we convinced myself to leave it be, we made savory salmon crepes (crepes with cream cheese, arugula, and smoked salmon--let me know if you want directions!) that were absolutely delicious. We wanted to get in some henna tattooing time, but thanks to my out-of-it, ADHD behavior, we ran out of time. But we still got to talk-talk-talk the whole time and it was a lot of fun!

Next I talked to my lovely but tired boyfriend Josh*. With the time difference between states, it was already almost one-o-clock by the time we connected. But we chatted for about thirty minutes and he gave me great advice for calming myself for the surgery today. I could share it... but I also don't care for broadcasting the details of my conversations on my blog :).

After we hung up, I was alone and I couldn't get over the anxiety coming from a combination of horrendous pain in my gut and anticipation for the surgery. Luck was on my side however, because I soon bumped into my good, old friend Dave* on Facebook. First he offered to drive two hours to come keep me company until I could fall asleep, so I wouldn't have to be alone and in pain the night before my surgery. But upon finding his gas tank near empty and local gas stations closed (remember in Oregon it's illegal to pump your own gas), his trip was canceled. To compensate for the loss of a visitor, we chatted on Facebook and then the phone for 2 1/2 hours.

Some great friends have really come through for me at various times during this experience. If anything, I wish I had a few more friends because I refuse to take up the same friends free time over and over again to satisfy my need for support! But the ones who have come through, please know how grateful I am! My friends have done such a great job of distracting me tonight, and I'm appreciative. I needed it. Because now that I've been left to my own devices, at 4:20 am, the pain is back and I am doing everything I can not to worry about my surgery. Everything logical tells me I am excited for this. I will finally be stopping the pain, pain I've had badly for almost a year now! My doctor said I should feel better even IMMEDIATELY after the surgery, because even though I'll be cut up, I won't have adhesions tugging on my body. I try to imagine what that might be like, but I honestly cannot. But I think it will be pretty amazing.

Problem is, that no matter how necessary a surgery is, no matter how great it will make you feel or how life changing it might be (and at this point now this surgery will be life changing for me--at least drastically changing how my life has been these past few months), no matter how much you want and need it, it is still scary. And it does not matter how many you've had or whether you're an adult or child. Going into surgery is scary. This will be my third recent procedure I've had. Two years ago I had major shoulder surgery, one year ago I had a laparoscopy for a 7 cm cyst and ended up having my appendix removed (chronic appendicitus is more common in women with endometriosis), and today I am having a laparoscopy for severe abdominal pain due to endometriosis. I've had complex MRIs and CAT scans. I've had a sigmoidoscopy and a colonoscopy. By now I should be a seasoned OR traveler. But I am not looking forward to having those IVs hooked up to me and being wheeled into that OR. I don't like that I won't know what they'll find till after the fact. I feel frustrated that I won't know if I'll lose my ovary until after. And being put under makes me nervous, because a small part of me is worried I won't wake up.

But a combination of writing this now and advice from friends and myself is helping me get by. Writing about what is happening is therapeutic. Of course I love that I am informing people of what's going on. Whether it's family/friends checking in on me, or a stranger who might gain some valuable tidbits for themselves or a friend who is suffering from one of these diseases. But it is also therapeutic in that I am able to sort through what is happening and how I feel about it. Not to mention that I absolutely love writing and having something interesting to write about, that people may want to read--it's very satisfying.

But onto the advice. I was reminded tonight first not to worry about the things I can't control. It's true that there are risks with surgery. But when I've reached a point that surgery is my only option for a chance at a normal quality of life, I have reached a dead-end point where the benefits greatly outweigh the risks. And my family and I have gone lengths to get me a great and experienced doctor, a surgery at a capable hospital, and we can afford all the precautions to ensure my safety. I am healthy enough now, have overcome the inflammation with ulcerative colitis, that surgery is a safe option. I've done all I can. And worrying about the 'what ifs' is not going to do me any good. And as for my own advice--after a friend commented on my ability to remain positive through all the disasters that have occurred, I first confessed that I am not always so positive. I have my down moments. But I generally try to remain positive. And without thinking much, I said, "You can choose to be upset or you can choose to be positive, but either way, s#*! is going to happen. But you get to choose how you handle it."

This surgery is going to happen. It needs to happen. And though it is very difficult to chose not to be nervous, I am going to try my very best to instead be excited. I am excited to be normal again and not be in pain 24/7. So I am thus excited to be cut up this morning. Things will go well, and everyone will see my elated post reporting good news either this evening or tomorrow morning. Please wish me luck and keep me in your prayers--Ash

*I did not have time to ask permission to speak about my friends, so I changed their names to protect their privacy

Tuesday, June 7, 2011

Funny Dogs

I wasn't forcing her into the picture... I was trying to stop her licking me!

Did you know that dogs are the perfect medicine for someone who is chronically ill? That they have been shown to help lower blood pressure, stress hormones, heart and lung pressure, and epinephrine. The have a calming effect on people. And they make a great distraction from pain.

I'm not sure if my dogs always have a calming effect on me. They certainly don't when they get into my trash, eat my underwear, or knock my laptop on the floor, then run out of the room panicked with my power cord wrapped around their ankles. Sometimes my dogs make me want to tear my hair out. They leave little black and brown hairs everywhere. Stuck into the corners and every surface in my room. But when I'm back at school, and I occasionally find those little black and brown hairs, they make me smile and wish I could trade anything to have those mutts back.

For those of you who don't know, I have three dogs. Two labradors and a dachshund. The biggest is Kona, a slightly overweight, overlumbering, and over affectionate chocolate lab that belongs to my mother. We bought her from a place that we later found out was a puppy mill. I can't believe we were duped, but she's such a nice dog. She's slightly inbred but despite seeming like a numbskull, she's very bright when it comes to certain things. For example, she can undo almost any zipper to get into a bag containing food.

Next one is little bear, our runt chocolate lab Berkeley. I call her little bear because not only do her looks remind me of one, but she makes this grunting noise that sounds exactly like a quiet bear growl. Berkeley belongs to my sister Meghan, but she usually lives somewhere that doesn't allow dogs, so she lives with my Mum. Good thing too, because she loves Kona so much, and Kona would be devastated if she left. The most important thing to know about Berkeley is that that dog will fetch until she dies. She picks up a tennis ball and flicks her head so she throws it at you. Over and over again, begging you with the saddest eyes in the world to throw it.

The third and final is Otto. A small little dachshund (aka wiener-dog) that has been completely devoted to me for eleven years. We got him for my Mum for a birthday present but he's always been mine--I didn't choose him but he sure chose me. I always wanted a big dog and that's the kind I begged for. I remember as an 11 year old, throwing a tantrum for a big dog. But we got Otto, and he's not like any dog we've ever had. He's not like an annoying little lap dog that yips all the time and is scared of everything or an ankle biter. He's fearless, runs around the house like a maniac, forgets that he is 11 years old constantly, plays with the big dogs, and growls at my boyfriend when he even tries to hug me.

These dogs have been wonderful these past few months. People have been great and come visit me when they can. But there are 24 hours in a day and visits only cover so many of them. Some days no one is available to come play with me. Talk to me and distract me from what's happening. And these dogs keep my attention.

On days when I couldn't leave bed, they piled in with me. And on better days when I was able to escape, I'd put some books in my back pack, try to remember my phone, and slowly walk up to the school a few blocks up the road with one of these animals. When I take Otto, I unclip his leash and he gets this crazy look on his face before he jets off through the grass like some sort of rabbit-dog. He's so short that when the mower hasn't been through in a while, the grass comes half-way up his body and he has to jump and bound through it. And it makes me laugh just thinking about it. When I take Berkeley, we take her ball. I'll admit it hurts a little each and every time I throw that ball. And it hurts a little more with each throw. But she is such an enthusiastic and thrilled fetcher, I can't bring myself to stop. I throw until she can't move, and then a few times more.

The great thing about having dogs when you're sick, is not only do they provide extremely entertaining distraction, but they are these loving, emotion-filled beings that love you unconditionally, and it's like they try to love you back to health. People who have never had dogs sometimes try to tell you that they are primal animals that are incapable of emotion. And I know that's not true.

My dogs display many emotions. The funniest of which being jealousy--they are constantly enraged when one gets something that they don't. Sometimes the big ones will tear up little Otto's toys because he got to sleep in the bed. Kona always knocks the other dogs out of the way to get attention. Berkeley throws full on temper tantrums (barking and growling, turning in circles, sometimes biting the other dogs) when we tell her she can't come somewhere with us and shut the door on her. And Otto shred some of my clothing the other day after I told him he couldn't come cuddle with Anj and I.

But they also show a lot of love. On a night where I just couldn't take anymore, I was sitting in the kitchen crying my eyes out, and Kona wandered in. She stared at me with her big almond eyes for a moment, before sitting and leaning against me. I wrapped my arms around that pillsbury, buried my face in her fur, and cried and cried. And she waited patiently. On another occasion, many occasions actually, whenever I've been upset but shut my door, I'll open it and find three concerned, furry bodies piled up against it, waiting to see if I'm okay.

People have played important roles in my recovery and friends have been irreplaceable in cheering me up when I'm feeling down. But I would be down much more often without these wonderful dogs. They make me laugh so much it hurts sometimes (literally). I'm smirking right now because i can hear a couple snorers on the couch across the room. I even can't help but laugh when I have to get up to gently wake up one of them because they're having a 'dog-mare' (when they start whining and crying, running in place, kicking there legs out to the side as they're sleeping).

I know why having dogs is such a therapeutic tool. Whether you're having a bad day, have cancer, or are dealing with a couple of chronic illnesses that cause chronic pain. Dogs love you as much as their furry hearts can love. You can shout at them, kick them out, get angry at them because they got in the trash, and all they want to do is convince you to love them again (which of course you do but they don't know that). The meaning of their lives is in playing and making people happy. It would be impossible for an animal like that not to make you happy and make illness a little more tolerable. It does for me.

Saturday, June 4, 2011

For Those Looking In

With all this crazy stuff that has been happening, I really try my best to remind myself that this is not only my deal going on. That's more easy to remember on days that I have to go over medical bills with my parents and feel like a leech for costing them and my insurance more money than I care to say. Medicine, surgeries, ER visits, doctors visits, MRIs… it adds up. But I often find myself thinking about me-me-me during this time. And I try to give myself a break on this--after all, I do have some gut wrenching pains wreaking havoc in my center of my body, pulling my focus inward. Focusing on myself is easy when my body is screaming for attention. However, the best distraction for this, which I unfortunately often forget, is to look outward. I need to tend to myself but I also need to remember that this hurt doesn't just hurt me.

I know that this is all very difficult on those who really worry about me. And going into their personal experience in a public blog doesn't really seem appropriate or fair to them. What I will say, is I feel for those who wish that they could stop all this and make the pain go away for me. I know I should cut back on my worrying, but I can't help but fret over the pain that me being sick and at times immobilized is inflicting on others. Those who have to care for me, be my taxi, help me on really bad days when I can't leave bed, or listen to me when I'm feeling so down I can't stand it. Who on my good days take me shopping and out to eat and around town. Who are willing to stick with me even on my worst days, when I can't stand how jealous I am of normalcy. Not only do they help me greatly but they are handling the difficulties of having someone they love suffer.

Some people have turned tail and run off during all this. I know illness makes some people uncomfortable. I think it scares people that getting sick could happen to them--that being young, exercising, eating right, doesn't necessarily mean you're 'safe' . I think some people want to believe that I did something to make all this happen, that I brought it on myself or it's my choice whether or not these medical problems interfere with my life. But I didn't--it just happened and it's not a choice. This experience has made me realize how unfair and unjust the stigmas out there about illness are. Sick people are not weaker than anyone else, they're strong people who happen to have fallen ill.

It can be greatly tempting to whine about this bad luck . Sometimes I do. But I know that I am also so lucky to have the medical treatment available to help me, my parents willingness to provide for me at this time, and an amazing boyfriend to support me . For those who have been my friends and helped me through this, I am really grateful. For whatever help I have been offered or received, little or great, I'm really thankful. I'm sure it can be really taxing to care for someone who is sick. Either because they need you too much or it's depressing to see someone so often hunched over and miserable. I've tried my best to be as independent as I can at this time--not to be stubborn, but to not be any more demanding on others than I already am. I wish I knew where exactly that balance fell--I collapsed yesterday (hurt my shoulder and back :( too) because I pushed myself too hard and wanted to do too much. But I am trying to find that balance and I hope it helps out those who are there to help me. Most of all I think it helps reassure people that I am strong and I am able to handle this. Maybe not by myself, but by the support of my family and friends--thank you.

Thursday, June 2, 2011

The Surgery

Ah, the surgery. Ok, first a rant, then an explanation of what it is. Because this is probably my biggest current frustration. But there are some maybe good reasons behind this. See, I have been meant to have surgery for two months. Every day I had to stay in bed from the pain, I would think about how surgery could turn that around. When I got to go out around town, I would think how surgery would make that normal rather than I treat. So why haven't I had it?

I have been technically scheduled three times, officially scheduled twice. Every appointment I had, about 1-5 per week, would surround healing me up and prepping me for surgery. It is the only option left for relieving me of the crippling pains I've been having from endometriosis. But I couldn't just simply have it. Ulcerative colitis had done a number on my intestines--it caused a lot of swelling and perforations in my colon and rectum. The medications I was on for the flare up also affected blood clotting and immune response. Surgery is already very taxing on your intestines and immune system. To cut me up during a bad flare up of the colitis risked dangerous likelihoods of infection, complications, or death. So even though I've needed this surgery for around 15 weeks, I had to keep waiting.

Last Tuesday was pretty rough, because when I went in for the pre-op appointment for the operation Wednesday, my doctor told me he didn't feel comfortable doing the surgery. It was one of those moments when your hearing and sight go fuzzy, when you tune out everything and go into your own head and have a moment. My Mum was at the appointment too and kept listening, but I sort of had a mini-meltdown in my head. I had pushed so hard to have that surgery last Wednesday, for both pain relief and so I could have enough time to heal to return to school. Summer Term starts June 20th, and I am going to be there. This cancelation threatened that and put me back in bed for pain. I took a moment, had a melt down, and then returned to my appointment. No crying, no temper tantrum, just snapped back and said okay. I wasn't going to change my doctor's mind and I needed him to try and get me in the next week.

Well, surgery didn't happen this week, but it is scheduled for next week. June 8th. I had my pre-op appointment today, all lights are go (meaning both my doctors ok'd the surgery), and Dr. Bair, my Mum, and I discussed the details today. Signed the papers, talked possibilities.

What does the surgery entail? Well, this surgery is a laparoscopy aimed at removing rogue endometrial tissue and scar tissue from various locations in my abdominal cavity. Dr. Bair is pretty much certain that there are multiple adhesions sticking some various reproductive organs to my intestines. I have four different severe pain centers, and it's possible that these represent areas that are being tugged on. What we're really hoping for is that these are simple adhesions--meaning an organ is stuck to another by only a single band of scar tissue. However, if there is a complex adhesion on my right ovary, which is a possibility, it'll have to go. Recurring problems would be much more likely in such a scenario, and as this is already my second surgery for endometriosis, we don't want to go down that road. I've already given the doctor permission to remove it if necessary, but we're praying that that's not going to happen.

There are some other processes involved in this surgery. We've discussed a laser ablation of some of my nerves to reduce pain, but I'm a little hesitant to destroy neural sensors. Maybe it's my major, but the idea of destroying nerves just makes me nervous. But I'm not saying yes or no until I do more research. Dr. Bair will also implant a hormonal device, check for endometrial polyps, and do some work both in and out of the uterus.

It'll be a long surgery but my doctor is fairly confident that because it is in the morning, I will be home that night. Risks of complications and infections are low. Visitors will likely be welcome :). It's at St. Vincents in Portland, on June 8th. Of course visitors at home will be welcome and enjoyed as well.

EDIT: Recently added, I've decided to let my doctor also perform a bilateral uterosacral nerve ablation. This is a procedure that involves destroying a part of the uterosacral ligament that is thought to be part of the nerve tract. By interrupting that nerve pathway, it is hypothesized that severe pelvic pain can be reduced. Results are mixed, with some women showing no improvement and some showing great improvement. But there are pretty much no risks, it will not affect any reproductive abilities or nerve processes, and it might really help my pain. I didn't want to agree to it until I had conducted some research and read some studies. But I now agree with my doctor and we are tac-ing this onto our to-do list for today.

Wednesday, June 1, 2011

Good things come in strange packages

Believe me or not, there are some things that I have to be grateful for that came from these past couple months. Some really good things--not cheesy 'well on the bright side' things. No, some genuinely good things have happened. And I want to share some. This is a long post, but I guess that means there is a lot to be happy about :).


First, I took a break from school. Okay, so that's kind of a bad thing. I'm obsessed with succeeding in my education, heck, I'm on first name terms with some of my professors, and leaving school a week before finals devastated me. I cried and cried and cried. But something good happened too. Because getting straight A's, over and over, at a ridiculously difficult school, wears at you. In a bad way. Especially when you're crazy, like myself, and need your A's to be 'real As', which apparently only count above 95%. What was it my boyfriend once said? "I can't believe that you're upset over a 93% Ash. Something is wrong with you."

Yes, something was wrong. I was a perfectionist, and I attached any failure or subpar performance in school to my sense of self-worth. I believed I got the grades I earned--and if I couldn't earn perfect A's, then something was wrong with me. I studied ALL the time, slept little, socialized little, just kept study-study-studying! And yes that gives me As, but what does it cost? Especially with my individual learning disabilities, I should have been more patient and proud of what I could do. But this theme of never good enough, never done enough ran in a lot of things I did, despite how caustic it was. And yet I couldn't stop pushing myself--getting sick forced me to stop and look at what was happening.

The cool thing about being forced to take a break like this, when I've been ordered by doctors to NOT worry about school, no worries about work or independent study--I've started looking at the way I motivate myself. It's taking a while, but I'm learning how to stop this constant slave-driving tactic and am being nicer to myself. It's hard to motivate myself with these 'pure reward' tactics--I'm not a girl of moderation. I've most often gotten things done because I either bullied myself or it made me too anxious to leave it undone.

But now, I am becoming patient. I don't do things because I should, out of guilt or because I'm unworthy if I don't. I do them because they make me feel good, help me, help others, or can make good things happen. I'm learning how to be patient with myself, my shortcomings, and appreciate the things I do well.

Perhaps this sounds silly or like something most people learned long before they were 22. But learning this now is much better than never, and the difference it's making in my life is incredible. I'm overcoming bad habits, working on art and writing again, and am happier. Even with all this bizarre nonsense happening, I'm happier about this. Because I had the time to take a break from my busy life and make some decisions on whether I was happy about how I was running it. I recommend anyone to take a moment and really look at how you drive yourself. Are you using the right kind of self-motivation? If not, can you change it? I'm not sure if I would have been strong enough to change this while I still needed to accomplish things (i.e. lived in the real world). But I'm confident with this break, when I head back into the heat of things, I'm going to be much healthier about my tactics.


I've gotten closer with my parents. This good thing is not entirely mine to share because it involves people besides myself, but I will say that this experience (at least on my side of things) has improved my relationship with both of my parents. Today, I'm kind of a stubborn and independent sort of person. And when I was younger, my parents were often busy with my other siblings. I've tried not to depend on their help for too many things.

Needing my parents' help so much these past couple months has forced us into close quarters and into frequent conversation about serious topics. You don't get that opportunity much as a 22 year old. It's been nice to bond with them and despite us all going crazy at times from me living at home again, I think we like each others company.


Little things don't bother me as much. Before I came home sick, I had made a goal to stop whining so much. I had used a personal system to track and reward/punish my whining levels and it made me a lot more aware of my whining. It was good timing, because it helped me be (on most days) much less whiny about my situation. This ordeal has put many things of my life into perspective and I feel like, from now on, I'm going to be more laid back in life's daily mishaps. I know a lot of things I used to think were a big deal just make me laugh now. There are still little things that get to me more than they should--I'm only human. But I've gotten much better about it overall, and I'm happy to have this new advantage.


I appreciate my mobility to new extents. I have not been able to drive for almost three months now. I can handle about one walk and one outing a day, sports or exercise are out of the question… I am almost entirely confined to indoors, to my bed. So when I get my surgery and heal up, it will be a long long time before I take for granted my freedom and mobility. The whole idea of skipping a work out because I'm 'tired'? No chance--I'll be happy like a crazy person to be moving. I know this sounds like a pretty pathetic 'good thing' but it really is. This isn't something I lost, but I have lost it temporarily, and I will cherish it to new extents when I heal up. People will be cranky and groggy to be awake or at work and I'll just be happy to be on my feet!

...I have now fallen asleep 3 times at my laptop, so I think it is time for a nap. This is the end of my post for the day :)

The Average Joe's Guide--Part B

I know it's really late to be posting on my blog. I probably look ridiculous. But I've had really bad pain tonight and I just can't go to sleep. I've tried painkillers, heating pads, hot soup, a hot bath, but nothing is helping. So I thought I'd start writing a little and then post in the morning--well, here's what came of it:

So for today we're going to go over ulcerative colitis. I've only known that I've had this disease for a little over 6 weeks. I'm not sure how long I've had it--I've had the problems for a long time, but can only remember when I stopped ignoring them, not when they actually started. But I've had less time to intensely research it like I have endometriosis. Being the nerdy scientist type, I can't help but learn everything I can about my body, what's working and what's not working. Not in a hypochondriac crazy way but in a "I can't possibly find out more stuff about all this crazy stuff" kind of way. I can't express how fascinating it is to figure out what's going on in my body. To help explain all these bizarre happenings that have just wreaked havoc with my body and caused more pain and disruption than I ever ever imagined! Well, I've been conducting my research with ulcerative colitis, and I might not know as much about it as I do endometriosis, but here's what I do know.

Ulcerative Colitis is one of the two major types of inflammatory bowel disease (the other type being Crohn's). Sometimes this disease is confused with irritable bowel disease, which has some similar but much less severe features. As my GI doc once agreed, IBD eats IBS for breakfast. Ulcerative colitis is an inflammatory bowel disease of the inner lining of the large intestines and rectum. It causes inflammation, reddening, and ulcerations (holes in the lining). This causes excessive and often painful bowel movements, diarrhea, mucus and blood in the stools, and lots of pain. It's associated with inflammatory problems in other parts of the body as well and low grade fevers. Not to mention weight loss. Ulcerative colitis ranges from mild, moderate, severe, to fulminant. (BTW, I have moderate ulcerative colitis--totally treatable but still sucky. I'll post pictures when I'm less lazy!). The symptoms wax and wane based on whether it's a dormant period or flare up of the disease (flare up meaning more inflammation/holes and thus more symptoms).

Treatment for ulcerative colitis is aimed at treating the inflammation in the GI tract. This is done with medications that work sort of like ointment for wounds on the outside of your body. I currently take 7 of these types of pills every morning. And during flare ups, which is when the symptoms are disrupting your 'normal' life, you take lots of prednisone--a steroid that operates as an anti-inflammatory. I used to have to take a ton of it, but am now off of it, yey! Signs that indicate degree of a flare up and need for extensive or mild treatment is based on… bum da da duuummmm! BMs. How many, how solid, how painful, how much blood--fun fun stuff. When you're at 10 a day, that's when it's bad. 4-6 a day is better. 2 a day and you're golden. IF your body can't respond to the medication, or if you get colon cancer, which is more likely with this disease, then you have to have your colon removed. It's the last thing you can do for your body in response to the disease--luckily, I'm not there.

Surprisingly, even though ulcerative colitis is an autoimmune disease that attacks the lining of the GI tract, flare ups are not caused much by what you eat. Of course this can vary for individuals, but for most, diet is not much of a factor during periods of dormancy. However, during a flare up, you have to be careful not to eat things that irritate your already inflamed colon. For example, I'm a little lactose intolerant, which wouldn't be a problem, but the reactions of my body to lactose cause a ton a pain during my flare ups. Also, heavy fats (i.e. saturated and trans) make my symptoms worse, because it's hard to digest. I knew things like butter or ice cream made me feel sick--I wouldn't want to eat heavy foods because they gave me digestive problems. But everyone just made fun of me and said I was scared of getting fat. I'm glad I listened to my body and just let people continue to make fun of me. Pretty much, for now, I keep a food journal and eat what my body wants.

Ulcerative colitis and Crohn's disease affect about 0.1% of Americans. Not common, but not rare either. People discover they have Ulcerative Colitis at either ages 15-25 or 50-60--two common 'age blocks' for flare ups to first start. I started having problems a few years ago. But onset is gradual, and I honestly didn't start having more serious problems till this past year. I honestly thought I just had IBS. And even though I ate 3,000-4,000 calories a day, and was still losing weight, none of my doctors were concerned (they just kept asking if I was anorexic, which got really frustrating) so I again called myself a hypochondriac. The extreme bouts of pain I had, digestive problems, lack of nutrients in my blood--it was something to be dealt with and ignored.

After my diagnosis, I started learning a lot of people around me had some form of IBD. Well, ok, not a lot, but the fact that I wasn't completely alone was reassuring. I even was going to attend a support group (but the night of their meeting I had a bad pain flare up and couldn't leave the house). But the point is people have this. People we all know--and they continue to live their lives and deal with it. It doesn't mean that they don't struggle with it or that their lives weren't made unnecessarily more complicated by it. It sucks. It really does. The pain and symptoms are really bad at times. Cry all day on the toilet bad sometimes. But l can keep living my life with it. If I keep taking my medications, watch my diet, get routine check ups to keep a vigilant eye out for cancer cells, I will be okay.

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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health, struggles, and happiness.