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.

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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.

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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.

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Ethiopian Adventures Part I

Ethiopia

On February 16, 2015 I embarked on a great adventure. To Addis Ababa, Ethiopia with my cousin and his wife. I tagged along on their excursion as they went to adopt an adorable Ethiopian boy. Along the way, I met some great new people, tried new food, learned about different cultures, and also became immensely grateful for everything that I have.

It all started in the beginning of February when my cousin emailed me and asked me if I still wanted to go to Ethiopia. Of course I did. Two days later, our flights were booked and we were planning to leave in two weeks. In record time I got my vaccinations, packed, and completed all my homework for the next few weeks. And then I boarded a plane headed to Addis. The flights there were excruciatingly long, but I can sleep anywhere so I just slept most of the way. And then we landed in Addis around 10 pm.  We waited in line for a visa and this was my first introduction to Africa time. There was probably a line of 40 people and fortunately we were at the front of it. And it still took us forever. They handwrite everything there and search through mountains of binders to find the correct form. Workers periodically get up and leave and come back 5 minutes later, even though there still are 40 people waiting in line. They talk amongst each other and laugh. The lady that was helping us, her pen stopped working so she spent about 5 minutes licking it, scribbling with it, and shaking it before slowly getting up to find a new pen. A good while later we had our visas and were ready to go.

When we were finished, it was dark outside, we were exhausted and we had new clue where to go. But eventually we found our way and made it to our hotel. We got to the hotel and they told us that they only had one room for us. That one of us would have to go to a different hotel. I started freaking out internally because I had no idea what I was doing, where I was going, my brain was barely functioning and I was having trouble talking nonetheless understanding this new culture. Fortunately the hotel was right next door, so everything went smoothly. The next morning at breakfast was an adventure as I attempted to navigate by myself which foods I could eat, what each food was, and where was the cereal?!? I then decided I would be healthy and take the stairs to my fifth floor room. What I didn’t realize was that Addis is at a high elevation so taking the stairs is a whole lot harder than normal. And normal stairs is hard for me. Needless to say I got a few funny looks as I wheezed my way to my room. 

I then moved my stuff to the other hotel and we headed out for the day. Driving during the day in Ethiopia is even more terrifying than at night when you’re half asleep. There’s more cars and you can clearly see all the ones you are about to hit. And all the pedestrians you narrowly miss. It’s a free for all there, no lanes. You just honk when people are in your way or if they are going too slow (that is something I wish we could do here. I may adopt that practice 🙂 ). People get side-swiped and just continue on like nothing happened. We went to two museums that day, learning more about Ethiopian culture and saw the bones of Lucy who was found in Ethiopia. Honestly I don’t remember too much because my brain was still foggy from lack of sleep and I had a hard time understanding their accents. And I may have been still recovering from the harrowing ride over there. In the afternoon we went to the orphanage and met little Bedilu. We walked into the orphanage and there were 3 little boys just sitting outside on their potty chairs. All the little kids were so adorable and we played with them for a couple of hours. That night we went to a traditional Ethiopian restaurant complete with Ethiopian music and dancing. I enjoyed the food and the singing for a while. But then jet lag overcame me and all I wanted was my bed. I honestly think I became a sleepwalker since I don’t remember the last bit of the show. 

Thursday we headed off to court. As a social work student, it was a neat experience to see their court system and how it works compared to ours here. For one thing, it’s a lot louder and busier than ours is 🙂 When we were done, the judge told us that if we waited about 15 minutes we could get our paperwork which would help speed the whole process up. We told our Ethiopian lawyer who came with us and he laughed. But we stayed and waited. 15 minutes passed. 30 minutes passed. An hour passed. Another hour passed and finally we were set to leave. Again Africa time. I had my book with me though so I was all set 🙂 That afternoon we went again to the orphanage and played with the kiddos. It was such a great experience to see Bedilu bonding with his parents, to see the orphanage where he grew up in. It was definitely a trip I won’t forget.

And the rest of the trip will be continued in a later post 🙂

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Life’s not black and white

When you’re a kid everything seems so simple. Adult life seems like a dream. You grow up, finish school, get a real job, get married, have kids and whatever else. You make money and can buy anything you want. What you don’t think about is all the decisions, struggles, the bills, and expectations that are made of you.

Once you graduate from high school, it really hits you like a brick. All of a sudden you face a whole new world. Are you going to college or getting a real job? Where do you want to work? What do you want to study? Are you going to run to Ireland and travel and work and then travel some more? (I was tempted by this, not gonna lie.)

Let’s follow my life for a minute. I chose to go to college but didn’t know what to do. All I knew was that I wanted to help people. How? I had no clue. I started out as a pre- Physician Assistant major but found out I hate Chemistry. I then changed to social work but decided the lack of money was awful. So I changed to music education. This changed when I realized that music is a hobby for me, not a job. (As you can see I am very indecisive.) So I took a social work class and goldmine! I found my niche. Finding resources and connecting people to them is what I want to do. Then I started the social work program and the doubts started creeping back. Am I sure I can handle the stress? Is this really what I want to do? I started doubting that social work is for me. I realized how much I like planning things, managing situations, and doing administrative work. I took a couple of non-profit management classes and I realized that I really enjoy that too. Now I have two things that I am interested in, how am I supposed to choose? Grand Valley does offer a MSW/MPA program which is a combined degree of social work with public/non-profit administration which sounds perfect to me. But the idea of another year and half to two years in school terrifies and horrifies me. I just want to work, gain experience, and make money. But the jobs available to me right now aren’t the ones I’m interested in. So I guess it’s more school for me. (Honestly, I have no idea what I will do. As you can see I’m waffling a bit at the moment.) Another option would be to run away and live in a cave surrounded by nature. That’s sounding pretty good to me right now.

I like planning things. I make lists. I have my days and weeks planned out. So it frustrates me when I don’t know what I’m doing with my life. When four months from now, I have no idea what I will be doing. I can’t plan vacations or road trips since I don’t know if I’ll be working or in school or living on the streets begging for money.

Another issue I struggle with is that I want to do so many things. I want to save the world, travel the world, and experience life fully. But I don’t know how to do this. I am searching for the perfect job that checks off every box on my checklist, but that job doesn’t exist. Even if it did exist, I don’t know what it looks like. I want to run a non-profit helping specific populations. I want to educate people about different issues that are important to me. I want to work with women struggling with endometriosis. I want to do so much and experience so many different things that it’s overwhelming and I don’t know where to start. But I’m learning to take it one day at a time and accepting that I may not find the ‘perfect job’ but I will find a job that completes me and helps others at the same time.

Life’s not black and white. It’s not cut and dried. There are grey areas. Things pop up that you aren’t expecting. No matter how much you plan and schedule, things change forcing you to adapt. The past few years have taught me this, don’t plan on life going the way you expect it too. People change, friends come and go, and crises happen. But how boring would life be if everything went according to plan? There’s be no surprises, no new friendships, no spontaneous adventures. And that would be unfortunate. So I guess while I’m adjusting to this life of uncertainty, I will accept the unknown and appreciate all the surprises life throws at me, good and bad, and appreciate the roller coaster that life is.

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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. 🙂

Friends Collage

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!

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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! ❤

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Things I love about college

I complain about college a lot. About the stress, the homework, the professors, and basically everything else. But I have to admit there are some great things about college life that I will miss once I graduate.

1. Class

Yeah class can be boring and frustrating but sometimes it’s nice just to be able to sit for 3 hours and not have to worry about anything except when the next assignment is due. The ability to just go on Facebook and Buzzfeed and anything else is amazing. (Yes I am that student, sometimes).

2. Fellow Classmates

Occasionally there are the classmates who chew their food loudly, or ask numerous questions. But then there’s the ones you can joke around with, stress out about life with, and have a good time with. The ones who will help you with your homework when your brain has died after reading 50 peer-reviewed articles to find the perfect article for your research paper.

3. The variety

I love college simply because there’s a variety in what I do. Some days I go to school, other days I work and to me it’s perfect because I do something different everyday. The days I do go to school, I have a couple hour break where I’m supposed to do homework, but really I just catch up on Youtube videos, who knew there was so many interesting things on Youtube?!

4. The professors

Usually I don’t speak with my professors often, however, since starting the social work program, I have gotten to know a few of my professors quite well and can go to them with any questions or can ask them for advice, which is very helpful because right now I’m struggling with the giant black hole that is my future. Plus I need some great recommendation letters.

5. The odd friendships that form

College throws at you some great friendships that somehow just pop up. Whether it’s at your internship and you’re stressing out about your midterm and almost run over a pedestrian or it’s during your 2 hour breaks between classes and you’re bored out of your mind and have deep chats with someone who is now your bestie. Either way, you meet some pretty cool people at college.

6. The easy excuse of homework

Homework is always there, lurking in the back of your mind. There’s always something that can be done. So if you need an easy excuse to get out of hanging out with people you really don’t want to or anything else, instead of sounding lame and saying you’re tired and you’re just going to crawl in your bed with comfy pjs you can say “oh I have sooo much homework.” And then you just sound smart and dedicated. Simple, right?

7. College clothes

No worrying about what professional clothes you’re going to put on for the day. All you have to do is locate the nearest comfy pants and baggy sweatshirt and you’re all set. And no one judges you. Or they probably do but you don’t care because you’re a college student and you can do whatever you want.

8. You learn the most interesting things

Oh I’m not talking about what you learn in class. I’m talking about what you learn when you’re supposed to be listening in class or during your break when you’re supposed to be doing homework. Procrastination gives you the opportunity to learn so many wonderful things from the Internet. I mean from Buzzfeed to Youtube, Pinterest to all those inspiring fitness and health food blogs (which I always mean to follow, but then get distracted) there are so many things to learn about. I never knew the variety of Youtube videos available. There’s so much more than just cat videos. Who knew there was modern day adaptations of Anne of Green Gables or Emma. Simply amazing!

I attempted to come up with 10 reasons why I like college, but I couldn’t think of anymore and Pinterest was calling me. I’m pretty impressed with how many I did come up with actually. (Also, I need to stop writing this and focus on what my professor is talking about right now) 🙂

But really, even though college is hard and stressful with so many things going on at the same time and constantly trying to remember to get everything done and learning how to balance school with work and an internship, it really is a period of my life I’m going to miss. Looking toward the future, I’m scared of getting a real job where I actually work with people and affect their lives. I just want to be a kid where my biggest worry is how I’m going to get this 10 page research paper done, it only affects me and my grade. But on the other hand, I’m excited to get out there and start changing lives and saving the world! Ambitious? Probably, but that’s what the American dream is all about right?

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Endo Update

So it’s been awhile since I’ve talked about my many health issues and I thought it was overdue. Because obviously you’ve been dying to hear about how my chronic pain is. 🙂

Because it’s my unlucky life there is good news and bad news. We’ll start with the good news. My endo pain is so much better since my surgery. I rarely have pain anymore and when I do it’s only about once a month when I’m taking pills that are supposed to combat the side effects of my other pills. Oh the troubles of taking too many pills. I went and saw my doctor las week and he was really happy about how well I am doing. So the plan right now is to take the medication that is suppressing all my hormones for 4 more months and then find a birth control that works since the medication I’m on right now has some pretty nasty side effects long-term. Good news right?

The bad news is that while I have one thing under control something new popped up. I was going to my physical therapist because after surgery I’ve been having weird leg pain and weakness in my legs. She suspected hip dysplasia and told me to see a hip doctor. So I went and the x-rays showed some funky things happening there. I tried a hip injection and then waited around for an MRI. Of course, since it’s me, the answer isn’t simple. It rarely is. 🙂 I had two things going on with my hip, mild hip dysplasia where my hip socket is too shallow and the ball isn’t very stable in the joint as well as impingement where the head of the ball is shaped oddly. (I have no clue if I’m describing this right, this is just what I got out of all the big words the doctor threw at me). So the MRI didn’t show any tears or anything which means that the pain is coming from the dysplasia which the doctor I went to doesn’t work with unfortunately. He also didn’t want me to see any doctors here since they might start cutting into me prematurely. I now have to see a doctor in Detroit since he’s supposed to be one of the best in the country that deals with hip dysplasia. Road trip to Detroit, whohoo! Any takers? 🙂

So that pretty much sums up my life lately, medically speaking. What is really frustrating to me is that I have a narrow time window of being pain free from the endo so I was really hoping to have at last sometime with no pain but apparently that’s not meant to be. My leg muscles are getting stronger because of all the PT so that’s a plus I suppose. 🙂

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Summer Memories

Here’s the clichéd phrase that my summer just flew by. But it really did. And honestly I’m okay with that. I like summer and all it entails: beach days, flip-flops, iced coffee, and everything else. But I love fall and sweaters and scarves. So I’m excited for fall. But I digress. I wanted to celebrate my last summer as a student with some of my favorite memories, in no particular order.

1. Beach days with my friends. I didn’t go on very many beach days, but the few I did were so relaxing and sunny…and just perfect. And included ice cream of course.

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2. My family road trip to Wisconsin. Having a few days off to chill with my parents and nieces was amazing

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3. Going on a mission trip to North Carolina, building wheelchair ramps, tearing off shingles, illegal swimming…

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4. Going to Mackinac Island with my friends that live so far away, taking old-fashioned, scandalous pictures, star-tipping…

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5. Roadtripping with my bestie to hear amazing Irish music:)

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6.  Walking the pier at Grand Haven complete with giant waves that splash you when you’re least expecting it.

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7. Hanging out with my favorite boys which includes wrestling matches to see who can beat me up, reading favorite stories, and them asking me a million questions about everything. 🙂

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8. 4th of July celebrations. Attempting to light off fireworks while they went whizzing dangerously over our heads (unfortunately I don’t have a picture to remember this)

9. My family and I spent a week at a cottage on Lake Michigan and it was beautiful and relaxing, as it was supposed to be, complete with sand castles, good food, laughing, sunsets and so much more.

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Oh and my nephew and niece were determined to catch a seagull 🙂

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This summer was pretty great and filled with so many amazing memories. This was just a few of them. So here’s to one more year of school and then freedom!!

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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.

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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.

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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:)

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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.

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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,

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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!

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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.