One year later…

Wow. It’s been over a year since I’ve been here. That’s awkward…

Well I’m back. What brought me back? Yup, you guessed it. Endo.

I was mostly pain free for about 1.5 years aside from the usual aches and pains that comes with having multiple chronic illnesses, until a couple months ago. Then, the endo came back with a vengeance. After a trip to my doctor, he suggested I try some medication to even out my hormones. A week of that did nothing, so I called and asked what to do next. They told me he was booked out until June (this was in February) and that my two options were Lupron or surgery. Now I have heard nightmares about Lupron and vowed never to do it and surgery didn’t sound appealing to me either for obvious reasons. So I decided to get another opinion.

I went to a new doctor that I heard of that uses natural methods to treat infertility and endometriosis. Hoping she could help, I scheduled an appointment. While her treatment ideas and advice weren’t awful, they weren’t a solution either. Maybe they would be after I had surgery and had a regular cycle, but for now it just wasn’t the right answer. However, she did recommend a surgeon that she knew did a wonderful job treating endometriosis. So I scheduled an appointment with her and traveled 2.5 hours to see her with my boyfriend (yup I got me a boyfriend in the past year 🙂 ).

Besides getting stuck in a traffic jam, which really taxed my nerves, I was eager to see if she could help. Needless to say, this is why I never get my hopes up for doctor’s appointments. Basically she wanted me off my birth control patch and my IUD, the two things keeping some of the pain at bay. She had no other solution for me and told me she wouldn’t do surgery until I was off of them for at least 6 months. Lady, if I did that, I wouldn’t be leaving my bed for 6 months. Honestly, she seemed confused as to how to properly treat endometriosis. The last straw was when she was examining me and found the strings to my IUD that previous doctors couldn’t find. She said “oh I found the strings, want me to pull it out?” Um how about no? Especially because I already said that I didn’t want it out. And even if I hadn’t said no, I think I would want some time to think about it, not just have you yank it out. She even seemed surprised that I said no.

So the whole visit was a complete waste. It had been about 1.5 years since I had a devastating doctors appointment like that and I had forgotten what it felt like. I tried to hold back my tears during the appointment with some success, although she knew I was upset and apologized she couldn’t do more. I basically ran out of there as fast as I could and got in the car and sobbed. I know this sounds dramatic, but until you’re in this situation it’s hard to understand. To have this hope dangling in front of you that a stranger will somehow be able to help you and take away all your pain. That someday you can live like a normal human being without having to take 10 pills a day and not worry about whether or not you should bring your heating pad on vacation. And then to have this hope taken away is devastating. So why even hope at all? Well, some days, hope is all you got.

The boyfriend and I just sat in the car for about 20 minutes, processing what just happened. Wondering what to do next. Questioning if there really was another answer other than lupron or surgery. Since this was his first doctor’s visit with me, he was even more hopeful than I was. And his hopes dashed even more. Hopeful that he’d be able to see me without pain, with more energy, and needing to take less medications, I can imagine it was just as hard for him as for me. The casual, joyful conversation that we had on the way there was quiet on the way back. The visit to Bass Pro Shops (my incentive to get him to come with me 🙂 ) was put aside.

However, we’re both pretty resilient and about 2 hours later we were laughing and joking again with our puffy eyes.

I then decided I was going to try to see an excision specialist, since it seemed surgery was my only option. I scheduled an appointment with a doctor near Chicago, about 3 hours away from me. This time my boyfriend and I headed into it much more wary. Again it was disappointing, but for different reasons. The doctor was kind, knowledgeable, and acknowledged my pain which is huge for endo patients. However, he wanted me to try 3 new meds for 3 weeks to make sure my IC wasn’t causing me pain. I knew in my heart that it wasn’t IC pain, but he wanted to make sure. At that point, I was so sick of the endless, everyday pain, of the extreme exhaustion that made the littlest tasks difficult, the constant struggle to maintain a happy, cheerful demeanor, etc., that I was disappointed there wasn’t a quick, easy solution. That I would have to wait 3 more weeks and then come back.

But again, I’m resilient. After the first couple hours of disappointment, I realized that I would survive and that it was probably wise to double check things. Three weeks later, I was headed back to the doctor. The new meds hadn’t helped anything and my pain had increased. The doctor agreed that surgery was probably the best and only option right now. He discussed what he’d do during surgery, checking other organs to make sure everything was okay. Checking to see how my IC is, see if I have PCOS among other things. I left really encouraged that something was finally going to be solved. I scheduled my surgery for June 8. I was feeling hopeful. Finally, a solution, an end to the pain, the fatigue, the aches, and hopefully some answers about what is happening in my body.

Well, life isn’t perfect and it seems that this disease is riddled with more ups and downs than a roller coaster. The Monday before my surgery, my insurance company emailed me saying that my surgery is not covered by them. So I had to cancel it and I’m working now to see what I can do to get it approved. More on that later.

This past year has been filled with so many good things that I would repeat it again, despite the pain. This disease has taught me one thing: to appreciate the good days even more than ever before.

The Year 2014.

It’s the end of the year and I decided it’s time for a report of sorts. I know that I haven’t been very faithful in blogging lately and mostly it’s due to the fact that I’ve been feeling better which is a positive. Since I haven’t had as much pain as normal I’ve kinda forgotten about the blog and the endometriosis world. But I’m back to summarize the past year and to talk about some new things that have happened recently.

The past year has been wonderful and challenging, exciting and scary. Even though I struggled a lot in the past year, trying to figure out how to deal with pain and the uncertainty of endometriosis and my health issues, I wouldn’t trade it for anything since I made so many amazing memories this year as well. I learned more about myself and who I am, I’ve become stronger, made new friends, and created amazing memories that I won’t ever forget.

About a month ago, my endometriosis pain came back with a vengeance so I called my doctor and set up an appointment to see him right away. He thought that I might have a cyst on my ovary since one of the medications that I am on causes cysts. So he scheduled an ultrasound and sure enough, I now have a new friend sharing my life with me. (Can I name him? 🙂 )The pain did go away with some medication tweaks and the cyst isn’t huge so we’re just going to monitor it and make sure it doesn’t get too big, I guess. Not entirely sure what’s happening with it, but I was just overjoyed that it wasn’t my endometriosis coming back. Other than that, my health has been pretty good which is a huge blessing.

I have one more semester of college left and I’ve been applying to grad school this week which has been stressful since I waited until the last minute possible to do this. But I’m excited about graduating and moving on to something new.

Anyways that’s mostly all that’s new in my life. Here’s some pictures from the past year that make me smile, laugh, and give me warm fuzzies. 🙂

These are my amazing friends who have supported me through everything, made me laugh until I cried, told me the truth even when it hurt, and were by my side through it all despite the crazy mood swings :). I love you guys!

And this is my family. Full of corny jokes, leg-stomping laughter, and unconditional love. Without my family’s support, I would be lying in my bed all day doing absolutely nothing. They encourage me to get up and keep going no matter how hard. I love all of you! (Aren’t they all just so adorable?)

This past year was filled with epic trips and memories but I wanted to share with you the people who have made me the person I am and have supported me through everything. The ones who made me laugh when I felt like crying, who told me jokes when I was so angry I couldn’t see straight, or who came and jumped on my bed when I couldn’t move because of the pain. I love all of you and can’t wait to see what the next year brings! ❤

A Letter to my Mom

This letter is much overdue and I’ve been meaning to write it for ages, but could never find the words. Not that I have the words now, but I realized that I need to start somewhere.

Dear Mom,

I don’t know what I’d do without you. Honestly. I don’t think I would survive. You do so much for me that I don’t even know where to begin. Words can’t describe this, but I will try my best.

When I was younger I never appreciated everything you did for me. And now I wish that I could go back and change all of that. To let you know how thankful I am to you for washing my clothes, making dinner, packing me a lunch, buying me presents and clothes, taking me on vacation, listening to me whine about my small problems, and so much more. Instead of growing more independent as I grow older, I feel as though I am growing more dependent on you. I rely on you for so much more now. When I was young I thought I could live by myself, do everything myself without your help. I thought I knew everything. Ha. I figured out I don’t and that I need you still, so much.

Being diagnosed with endo and other health issues has caused me to rely on you even more and given you more work then before. Which I feel bad about. You shouldn’t have to worry about me, go to so many doctor appointments, and help me when I’m in so much pain. You should be spending time with your grandkids, having coffee with your friends, and going on dinner dates with Dad. But I am so thankful that you are willing to give up things to help me. You have no idea how much. This is why I promise when you are old and cranky and senile, that I will always be there to help you:)

You and Dad have helped me get through this tough time and I’m sure you will help me in the future. I don’t know how I could have done it without your support. Thank you for waking me up an hour early in the morning to give me my pain medicine. Thank you for pushing me out the door to work and school because without that I probably wouldn’t have gone anywhere. Thank you for going to doctor appointments and demanding that something be done because you can’t stand to see your daughter in pain. Thank you for working for me when I’m in too much pain, for cleaning my room and doing my laundry. Thank you for always being so cheerful and greeting me with a smile, for asking how my day went, how my pain is, and what you can do to help.

Thanks for always being there, no matter what.

You and I have different personalities and sometimes it’s hard to understand where the other is coming from. But I’m thankful for this because without that I probably would give up and just sit at home, but you keep pushing me to try new things that might help me. You are always so positive that someday, we’ll get it all right and I’ll be pain free. And for that I’m grateful!

Mom, you and Dad are the most inspiring people to me because you always think of others before yourself and I wish that I could be more like you. Thank you both for everything that you do.

Happy Birthday Mom, hope you had an amazing day. I love you ❤

Love,

The Spoon Theory

When you are healthy and live without pain you don’t realize how hard it can be to simply go through everyday tasks. You think nothing of getting out of bed, getting dressed, eating breakfast, going to work, coming home, hanging out with friends, etc. Yeah it might be difficult to drag yourself out of bed because you stayed up late finishing a real page turner. You might get home from work and feel exhausted. But this is only a small part of what people with chronic pain deal with.

Before I lived with chronic pain, I took advantage of the fact that I had enough energy to clean my room, go to work, school, and hang out with my friends, walk the length of the pier, and so many other things. Now, I would give anything to have one day where I had enough energy to do everything that I wanted to do. Whether it’s because of the pain, the medicine that makes me tired, or a combination of these, most days I get home from work and do absolutely nothing because I used up all my energy simply getting out of bed and going to work. It’s hard to explain to people that don’t live with this everyday, why I can’t go out to eat or quick run to the store or even get up and go for a walk. That’s where the spoon theory comes in. I found this on a fellow endosister’s blog and it explains things so well!

Here’s the actual post by the lady who came up with the idea. She has Lupus, but everything she says relates so well to endo or any chronic pain someone is living with. Here’s the blog I found it on first and so many things she writes about relate to me that I’m just like, can you read my mind?

The jist of it is that everyday, those with chronic pain are given a number of spoons. Each day you wake up with a certain number. Some days you may have less or more, depending on many factors: such as the time of the month, what you did the day before, etc. Each activity costs a spoon, even little things like taking a shower, getting dressed, eating breakfast. The point is by the end of the day you may have only one spoon left, but 5 things you still need to do. And you need to chose which activity you will do. Most days my spoons are almost gone by the time I get home from work. And then I need to chose the one thing I want to do that night.

Before I had this pain, I never had to calculate exactly what I wanted to do that day. I just did whatever I wanted without worrying if I had enough energy. Now, I need to watch whatever I do because there’s no way I can get extra spoons. Once they are gone, that’s it.

It’s really hard to explain this to people who don’t live with pain everyday. To explain why you can’t hang out, or why your room/house is a mess. Or why you’re so quiet. But to me this is the best way to explain it. I hope this helped explain things. I hate it that people might think I’m lazy or boring or anything else simply because I don’t have enough energy. So I hoped this helped clear things up a bit!

And to my fellow endosisters out there, here’s wishing you an extra spoon today!

Life after Surgery

I know it’s been awhile since I last posted but life got busy, somehow. You would think that during a week of recuperating as well as the absence of school I would find time, but no.

The first few days after surgery were filled with, well, nothing really. I mostly just slept, rested, read, and did my very best not to move. During those days I told myself that I would never have surgery ever again, no matter how important. But, like most things in life, the pain and bad memories faded and now I think I would be able to survive another surgery if I had to. The next few weeks were a quick recovery to my somewhat normal life. (How normal can a life be with chronic pain?)

During the surgery, they excised some tissue and biopsied it to see if it was really endo. It turned out that it was. There’s one of my many questions answered. Although with one question answered, a million more pop up. How will they prevent it from growing back? How much of my pain is really from endo? Which medications should I take? And so on. Now I wait till my doctor’s appointment with all these questions racing through my mind. One disappointment from the surgery was that all my pain isn’t gone like it was last time after surgery. Most of the endo pain is gone, but I still have some muscle pain that must be from the pelvic muscles. So now that’s one more thing to figure out how to fix.

Overall, life has been pretty good. I went back to work about a week after surgery. About 4 weeks later I went on a mission trip to North Carolina. I was worried how it would go since I was still recovering from surgery and my pain wasn’t completely gone but it went pretty well. I managed to help build a wheelchair ramp, tear shingles off a roof, and stain some cabinets. I did have a few minor mishaps and spent one day in major pain, but I pushed on.

It’s hard being one of the few people living in chronic pain while surrounded by 25 seemingly healthy and energetic people. I worry that people are judging me because I don’t work as hard, or because I’m quiet and not running around. Sometimes I wish that I could just have a normal life for a few days. Without having to wake up feeling like a truck ran over me, with legs so week that I can barely stand. Without a body that aches like an old woman’s and I feel like I should be able to tell the weather with it. Without worrying if I took my many medications or when I should take my pain medicine so I can make it through the whole day. But then I remember that what I have to live with is so insignificant compared to other’s lives. I have my friends and family to support me. I have a job that is flexible. And I am still alive to appreciate everything that I have. I’m still here to somehow make a difference and help others. And for that I am thankful.

 

The Joys of Surgery

So today’s the big day. The day I’m depending on, maybe a little too much. I’m hoping that the surgery today will take away some or most of the pain I’ve been having. But there’s two ways of looking at it. If the surgery doesn’t help with the pain, or only some of it, maybe endometriosis isn’t the only thing causing pain. Which will be hard since I won’t know what’s causing my pain, but could also be good because perhaps whatever is causing the pain has a simpler solution then endo. So I don’t know what I’m hoping for right now. Endo or no endo? Not sure. Just some answers, I guess.

So although I’m hoping this surgery helps take away my pain as well as shed some light on the whole pain issue, the whole surgery thing is for the birds.

First, there’s the prep beforehand. This time, I could only have full liquids 2 days before and clear liquids the day before as well as a bowel prep. So right now I’m writing this, starving, while at the same time making a list of all the things I want to eat after my surgery. 🙂

Last year, I had surgery around the same time. The time before surgery in the hospital isn’t that bad, since they give some good meds to help with the pain and such. But afterwards, the extreme discomfort from them moving around some organs and cutting my stomach open was pretty bad, including the nausea from the anesthesia.

The doctor told me last year to expect a week for recovery. I kinda laughed and said, me? A week in recovery? Nah it’ll only be a few days. Yeah, it actually was a week, which was a surprise to me and kinda made me go stir-crazy towards the end. I guess it just depends on the doctor and how you’re body reacts, but I’m hoping the recovery process isn’t quite as long.

I hope and pray that everything goes well today and that I get some answers as to what this monster is that lives inside my stomach.

So many questions

I always have hard time adjusting to change. Like at the end of the school year, when I’m all done and my schedule changes completely, I always feel a bit restless for a few weeks until I get back in the grove. But this is more than that.  Right now, I feel like there are a thousand bees in my brain all buzzing around and I can’t think straight… at all.

So I went to the doctor a few weeks back and we decided to schedule surgery to cut out the endo so he can biopsy it and make sure it really is endo. Apparently, last time, when my previous doctor scraped out my endo, it didn’t mean it was endo even though she told me it was? This is why I’m so confused. I’ve been living for a year now thinking that I was diagnosed with endo only to be told by my new doctor that just scraping the endo isn’t enough, you actually have to cut it out and biopsy it to make sure it’s endo. So which doctor is right? The problem with this disease is that there are so any different opinions from the professionals that are supposed to know all about endo that it is extra confusing to the patients.

Another problem I’ve been having is a lot more pain in my back, which I’m not sure is related to the endo or not. What if it’s something else? I now have another thing wrong with me? I’m not sure I can deal with that. But wait a moment, I don’t even know if I have endo for sure now, so maybe I don’t have endo and I’ve been living for a year thinking I do.

I guess I’m just scared. Scared of having another surgery. Scared of the doctor telling me that, yes it is endo and we’re going to have to come up with a life-long plan to keep your pain at bay. Scared that the doctor will tell me, no it isn’t endo, sorry kid we have no idea what it is. I just have so much pain every day, I wonder if I’ll ever live a normal life where I can hang out with my friends without having to leave early, or get a real job and not have to worry about calling in sick too much.

And then there’s the whole thing with Dr. Drew who minimized the pain that 176 million women throughout the world face everyday, saying it’s a garbage diagnosis and it’s just what doctors diagnose when they don’t know what else to say. Thanks a lot Dr. Drew, a man who has never before experienced this pain, who doesn’t know what it feels like to be already rejected by doctors and waiting years to receive a diagnosis, who just made all of us women feel that rejection and pain all over again by telling us, it’s just in our heads and doctors don’t know what to do with us. Sometimes, I feel like we are lepers. Just give them a diagnosis and put them outside the walls of the city. Maybe toss them a pain pill now and then when they’re screaming really loud and it’s bothering us. (Sorry, now I’m just being dramatic) 🙂

So it turns out that now I have a lot of angry bees buzzing in my head with questions. 🙂 I guess I just needed to vent about how confusing and frustrating this disease is. How much it can affect your mood. And how society and doctor’s opinions about this disease really affect you too.

I really am working hard to accept whatever monster is inside my body gnawing at my stomach and now my back. This past weekend has just been a long one, and I needed to get it out there.

If you have any suggestions, or know any answers to my questions, I would love to hear them. Because I’m still as confused as ever and I would love some answers. 

5 New Things

I wanted to give you all an update on all the crazy and not so crazy things happening in my life right now. Just in case you care. 🙂

1. A couple weeks ago, I had some pelvic injections to see if my pain was coming from the endo or my pelvic muscles. Turns out it wasn’t the pelvic muscles (could have told them that)

2. After waiting 2 months for a procedure that was supposed to take away my pain, I waited another 2 weeks to see my doctor to figure out where we go from here. Worried that he would be the same as my last doctor and tell me over and over that it’s not endo it’s something else. Just go to physical therapy and suck it up. It’s not endo growing back, it’s gotta be something else. Thankfully, he believed me when I told him that I thought it was endo. He gave me some more pain meds, got me into a different pain clinic to try some different pain management, and is going to schedule surgery to see how much the endo is growing back. This time he’s going to biopsy the tissues he takes out to make sure they are endo and then we’ll come up with a treatment plan to keep the endo from growing back. I’m actually really encouraged by the plan that we have and I am so happy that he believes me and doesn’t minimize my pain. Because if he had told me it’s in my head, I may have done something I’d regret later.

3. I decided that I want to start a business. I’m still in the thought process about what kind of business yet, but I want to start a business. (Any ideas or suggestions will be gladly welcomed)

This is what my office is going to look like

4. I am in my last week of my junior year of college. Which means that summer break is almost here. I may spend my first week sleeping because of the massive amounts of papers due, but no more class sounds amazing. As a side note, I think I’m going to add up how many pages I wrote this semester for papers. I feel like it’d be in the thousands. (I may be exaggerating a bit, but that’s what it feels like).

5. I heard of this new idea of a financial social worker. I guess you help families make a budget and stick to it. Which I love this idea because I love numbers and making budgets and I feel like helping families save money would prevent a lot of other problems from happening. Anyone know anything more about this?

Can’t think of anything else you guys would want to hear about. (Not that you wanted to hear about this) 🙂 But let me know if you have ideas, suggestions, input, or comments!

 

For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?

I found this really good blog post from yellow paper dress.

For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?

Endometriosis is a condition that occurs when the lining of a woman’s uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility.

The average time it takes for a woman to receive an accurate endo diagnosis is 10 years.

I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my “endo-sisters” out there.

I’ve tried for a long time to find a way to explain how endometriosis physically feels, to someone who doesn’t have it.

It’s not a question that I receive often, but since we harp so much on the fact that it’s different than cramps, I feel that us endo-girls kind of owe the rest of you an explanation as to what it does feel like, you know?

Many women with endometriosis associate their pain with the term “flare up.” I think most times, this is referring to the severe pain. Not the daily pain that many women deal with, but the times when it gets really bad. The Emergency Room times. The Percocet times. The how-the-hell-am-I-supposed-to-get-out-of-this-bed times.

I posed the question to an endometriosis Facebook group and received some helpful and honest answers. Keeping in mind that every woman is different, some may find several or all of these to be true in their case, some may not relate to any of them. But these were the most common answers.

What does an Endometriosis flare-up feel like?

It feels like someone is grabbing your insides and twisting them as tightly as they can. Like the “rug burns” that children give each other on the playground by twisting the skin on their arms, but inside of your pelvis and abdomen.

Like recurring, nonstop, appendicitis. Many women with endometriosis are actually misdiagnosed with appendicitis! I never had it, but I’ve been checked for it via ultrasound multiple times in the ER when I’ve gone in with endo pain. I heard from several ladies who have experienced both and said that endometriosis is similar or worse. Even one whose “appendix almost ruptured due to [her] high pain tolerance from endo.” Yikes, girl!

Like a dull knife making quick jabs into your abdomen repetitively for days.

It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Like pushing on a sprain or digging your thumb into a fresh, deep bruise.

It feels like the worst food poisoning you can imagine. Your muscles are tight, you’re nauseous, dizzy, and there is an uncontrollable, sharp, pain in your stomach.

Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there’s a lingering pain from the burn.

There are many opinions about comparing endometriosis to labor pains, by the women who are lucky enough to experience both. (Endo is one of the leading causes of female infertility) More often than not, I hear that the pain is similar, but some mamas argue that endo is worse. I heard from two mothers :

“When I had my daughter, early labor and transition labor felt identical to endo pain.”

“I had very long and difficult labor with my first born (almost 10 lbs)….

Giving birth without epidural twice, I can say that for me endo is

much, much worse than giving birth without epidural.”

It’s throbbing. Aching. Ringing in your ears. An entire body feeling overheated, but in need of heat at the same time.

It is a relentless pain. Sharp and then dull. It teases with previews of what is to come, then magnifies your pain to points you didn’t know a person could tolerate until you had no other option.

I’m sure words can only do it so much justice.

We black out. We faint. We vomit. The room spins. For hours on end. For days in a row. And it leaves only to come back again. And we know it will be back again. Every time, we know.

And that’s why endometriosis feels like hell. Sometimes, it feels like wasting life away. Sometimes it feels like failure. Like jealousy. Bitter, isolated, and misunderstood.

Sometimes the physical pain is the least painful part, actually.

For many women with endo, and in my particular case, daily life consists of a dull discomfort. Exhaustion, nausea, aching muscles, twinges of pain in the abdomen – like a dark reminder not to get too comfortable.

And for other women, there’s none of this. Just because the pain isn’t as regular or as severe as other girls may describe it, doesn’t mean it isn’t endo. It very well could be. It’s really important to remember that everyone’s symptoms are different.

And yeah, okay.

I guess maybe sometimes it does feel like cramps.

But we call those our “good days”.  😉

via yellow paper dress.: For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?.

What not to say to a girl with endometriosis

Story of my life!

teambabylare

I know I’ve done a “what not to say to a girl with infertility” before but since it’s endometriosis awareness month, I figured this would be a good way to help push endo to being more understood in society.

Endometriosis is a disease that occurs when your lining grows outside of your uterus. It can attach to any organ and causes excruciating pain. It can also cause internal bleeding and has been linked to cancer as well. It is an extremely serious disease which has absolutely no cure at this time. It often goes undiagnosed or misdiagnosed a decade or in some cases even longer. 176 million girls have this disease so let’s help find a cure so no other girls have to go through this!

Okay, let’s begin….

“but you don’t LOOK sick..so it can’t be that bad.” No, believe me..it is THAT bad. Unfortunately, we do have to…

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