The Language of Addiction

The struggle stigma is real.

I'm the mayor of my hometown. I'm a college professor and director-level employee. I'm a founder of an endo support group. I am a statewide board member of Equality PA. And I'm a drug addict. 

Wait, no. I'm not a drug addict. But according to many peoples' perceptions of addiction and drug abuse history, I probably am. Why? Not because I have to pain manage with prescription medications on a daily basis, but because of the perception of what addiction and drug abuse is.

I recently started serving on a local, county-wide Heroin Task Force. The need for education, awareness and support for heroin users is almost frightening; heroin is infiltrating every community, effecting every socioeconomic class, and damaging every family it touches. Even my own family has struggled with addiction--how to intervene appropriately, where to draw the line, who to ask for help and where to go when you do need help. While the heroin epidemic is a significant subject of discussion, I found myself thinking more and more about the women whom I have connected with in the Central PA Endometriosis Support Network. Many women whom I've encountered take prescription pain medications to help regulate their symptoms of moderate to severe pain. As the task force continued to talk about "why is heroin becoming the drug of choice," the conversation shifted to prescription pain medication, particularly opiates, and the over-prescription of them.

The task force is comprised of many community-based agencies--some of which are in the social/human services field, some criminal justice, some non-profit and some in education. Great! A wide range of professionals is exactly what a community needs in order to appropriately tackle heroin use. As we took turns speaking about how our agencies could contribute to the task force, I started hearing some familiar language and terminology being used to describe heroin users: addicts, drug addicts, criminals... 

Does heroin lead to criminal behavior? Often times, yes. Are the people who become addicted starting off as criminals? No. But the perception of drugs is this:

1) you take pain meds
2) you become addicted
3) you are a drug addict
4) you are a criminal

Admittedly, I used to think this way. I used to be the person who could never understand why someone would abuse narcotics because I didn't like the way they made me feel: detached, loopy, not in control. In the task force meeting, one of the members said, in essence: I don't get it. I have a hard time wrapping my head around addiction as a disease.

I appreciated his feedback and perspective because it was honest. I think the thing that shook me at my core was that I know this perception of addiction is probably the majority perception. And I used to be a part of that majority. What made me change? Endometriosis and suffering from chronic pain. 

Because I have to take pain management medications on a regular basis, I have become hyper-aware of the risks involved with opiods and opiates. Because addiction runs in my family, I am always self-monitoring and making sure I don't over medicate. 

But over the past 10 years or so, I have been treated as a drug-seeker in emergency room visits because, as we all know, you can't see endometriosis with an MRI, CT scan or ultrasound. I've felt judgmental eyes scan over my prescription list a the pharmacy and had pharmacists even ask me "what are you taking this medication for?" My doctor has referred to me as an "old lady" because of my past prescription list. Have I asked for any of this feedback or commentary? Nope. 

In all this commentary, has anyone asked me if I think I have a potential problem? Has anyone said, "are you talking to your physician regarding the risks of taking opiates?" Has my primary care doctor said anything about me taking prescription pain medications for endometriosis? No. But...why? If it's second nature to evaluate someones' potential addiction from afar, to assign a (negative) quality to your relationship with pain management prescriptions, then why is it so difficult to encourage a dialogue about the risks of addiction? If it means so much to people--sometimes complete strangers--why aren't they asking you if you need help? 

You'll tell me: "It's very personal to talk about potential addiction," or "I don't want to upset them by making accusations." So it's not okay to talk about help, but it's fine and dandy to discuss someone's social downfall? Whatever. Look, I get it. I also want to judge in silence...or judge by calling my bestie to gossy. However, the fact remains that addiction is a social stigma, not a disease.

Wait, no. It is a disease. We need more people to approach addiction with these words. 

Finally, I'll mention that I feel quite strongly that the conversation about addiction should, in all cases, start between the doctor and the patient when these meds are prescribed. If my doctor said to me, "Hey, look, I know these can be addictive, so let's make sure we keep in touch if you feel like your body is responding in these ways (list risk factors here), and I'll make sure to help you." That's it. The 'helping' can be seen any way the patient wants to see help--whether they think it's code for "I'll help you get more meds" or "I'll help you if you think you are beginning to see patterns of addiction." Who cares! As long as the doctor and patient are having these conversations, we're doing the right thing. Nobody's perfect. Nobody is automatically immune to prescription drug dependency. Until we can accept that fact, we will be speaking the wrong language. I won't understand you, and you can't understand me. 

(Not a) Mystery Diagnosis

I just had surgery, again, for the second time this year. And it sucked. How's your life going?

Me as Ursula the sea witch this past Halloween. Fitting, I think.

Even though I haven't written a blog post in a while, I have been keeping active with my online community of endo sisters. One of the main concerns I see quite often is that of a return to a life with chronic or acute pain. So often we depend on those surgeries to wipe away any anguish, fatigue, nausea and pain. Usually it works for a while, but it's not a surefire way to stay out of the frying pan.

You see, as a patient, we have responsibilities. For me, I'm supposed to not only take my medicine, but I'm supposed to make sure I'm taking it on time and not skipping doses--especially for hormones. I am also supposed to eat healthily, avoid alcohol/fatty foods/fried stuff/gluten-heavy delicacies of awesomness. And for the most part, I really do well with this habit. Finally, I know I'm supposed to stay active, get sleep at night, and make sure I'm conscientious of my stress levels because I often get sicker when I'm more stressed. It's all connected, you see.

What happens if I don't follow these rules--these rules that were set by both ME and MY DOCTOR, by the way. This is not a one way street--it is a two lane highway going in both directions. Let me tell you what happens when I forget to put in my new NuvaRing: I get cysts. LOTS. Oodles of gross, painful, and sometimes hemmorhagic cysts (which means they're bloody on the inside and dying). Eww. And lemme tell ya--these fuckers hurt. It is not comfortable by any means, and as I type this, I have a small hemmorhagic cyst that's killing me softly with its song. And it sucks balls. Well, I guess it sucks ovaries.

So I'm writing this blog to remind us all to follow our own directions. If you don't, you may end up with a bad flare-up or worse, an awfully painful cyst that is literally tearing your ovary as it tries to attach itself to your abdominal wall. Also, for the record, ovaries have a comparable amount of nerve endings as do the male testicles. Could you imagine having your balls trapped in a vice for 3 weeks and then in the 3rd week, it starts to rip your balls? If you can imagine this, then you know what it's like to be me this past November. It was awful.

Luckily, however, figuring out what is wrong with me has become a project in itself that I am kicking ass on. I can totally tell when something isn't quite "right" with my body, and I'm able to feel confident enough to follow my instincts and get an ultrasound--even if that means I have to charge into the ER with awful pain. If you're an endo warrior, then you already know how dreadful it is to go to the ER with this disease; everybody thinks you're lying, that you're a drug addict, that you're faking it all for that shot of Dee-lo-lo (as a nurse at my last ER visit referred to it). Truth is, when you're in that much pain, the only thing that does give you relief is not only some medicine, but results. And don't you love when you know that you have a cyst and that you're not just crazy? I know I do.

I guess that's just the point: always follow your instincts and don't give up until someone listens--and I mean truly listens--to your story. Your life doesn't have to be an episode of Mystery Diagnosis if it doesn't have to be! For example, I had that cyst which started to give me issues way back in October. Then I had it removed because we thought it may have been causing ovarian torsion (and you don't want to fuck with that if you want kids someday). Then 2-3 weeks after post-op, I was sick again--really sick and in pain. Awful pain. And so nauseated, I couldn't even eat at Thanksgiving--my favorite meal of the year! You know it's bad if I don't pile my plate with stuffing. It turns out, I had a new crop of cysts--small ones on my ovaries (both) but all follicular cysts. I knew it, too! Another 2 weeks later, and still having pain and nausea, I had another ultrasound which revealed yet another hemmorhagic cyst that's on my right ovary as I write this. I knew that was going on, too!

While I don't have to have surgery to remove this ovarian cyst, I do have to start thinking about other methods of hormone therapy before my husband and I start trying to conceive. I'm not quite there yet, but I have to start thinking about it for the sake of my health and sanity; in other words, this right ovary is a trouble maker and will probably have to be removed in the future. This is the start of yet another chapter in my journey with endo that I did not really anticipate, but I feel okay moving forward. "Okay" means that I have the support I need at home and from my physician's office. 

I may not exactly know what will transpire with my body over the next, few months, but I'm okay with figuring things out as I go. In the meantime, I'll continue to listen to my body, make sure I take my meds on time, and keep in touch with my doctor. And if something feels out of place again, I know exactly how to handle myself. What a blessing that is when you really think about it.

Nothing Changes if Nothing Changes: Extra Horomnes. Extra Fat.

I've gained 25 pounds since December.Which isn't normal for me. In all honesty, I am a yo-yo weight type of person where I can gain/lose 10 lbs pretty easily and if I go over a certain weight, I always can get back down.

Until now.

At first, I knew that weight gain was due to high stress and a bad diet. I ate whatever I wanted and ate probably more than I should have; indeed, it was my fault that I let myself fall back into a poor pattern of eating habits. Stress eating is my love drug. It's what I used to do to get me through the day of nasty pain and feeling like my head was going to burst at the end of the day. [I should mention that my job is quite stressful at times and was especially stressful this past spring.]

However, I realized back in February this year that my weight gain had been significant and also quite rapid--which is not normal for me despite my eat-til-you-feel-better habitudes. At this point, I reached a tipping point on the scale (197 lbs--my all time highest weight) and decided that I better change my ways. And fast.

So I started working out regularly. Getting back on a half-marathon training schedule. Not quite eating 100% healthily, but nonetheless, making much better eating choices. I quickly shed 5 lbs, and I was pumped. YES! It was working! But come April, I noticed that, unfortunatley, I was starting to gain weight during this 4 week process. Again: not normal for me.

Around the 20th of April--during the peak of my busy work schedule--I ended up in the ER with severe abdominal pain. Luckily my ER doc was AMAZING; he listened to me, believed me when I said I thought it was an endometriosis flare-up, treated me with some pain meds, and after diagnostics revealed that my lady parts were okay, sent me home. He was an angel, but I don't think he knows it. Any person with endo knows that getting onto a healthy schedule with exercise and eating is the best decision we can make for ourselves--but is it easy to maintain? HELL NO. Why? Because of the pain. The nausea. The fatigue. It's hard to keep up with something when our bodies fight us on a daily basis. Also I was feeling defeated because my exercise schedule did not go as planned, and I was gaining weight.

Defeated, but not wholly deterred, I decided that I needed to be more drastic with my diet plan. Eat less. Always eat a salad with lunch & dinner. Drink tons of water. Give up take-out.

Again, I lost some lbs quickly, but I slowly came back to the 194 lbs mark. And here I sit today.

So I started doing some research about Mirena and the NuvaRing. I've decided that it's not just my fault, but that the hormones in both birth controls are affecting my body's metabolism and ability to lose weight. Honestly, after tracking my calories to lose 2 lbs a week on "My Fitness Pal" app and getting light but regular exercise, I should have certainly been shedding the pounds. But I haven't been.

In 2 weeks I have a multiphasic blood scan scheduled, as well as a measurement of my HDL & LDL cholesterol and my TSH (thyroid) levels. It is common for women with endometriosis to also have hypothyroidism, and I am worried that with heart disease in my family, that the horomones could pose a threat to my heart health.

Bottom line is this: I can't live the way I'm living anymore. I think about my body's health, and I worry that my heart health is suffering from weight gain. I worry that I may have hypothyroid disease because it also runs in my family. I'll certainly find out where my levels are in a few, short weeks, but I still worry.

The point of being so honest and up-front about the possibilty of weight gain due to increased hormone therapy is because this phenomenon is not just in my head: it's real. And it's here, happening to me. I'm not sure how to handle this phenomenon, as I've always been able to lose weight with a strict diet and healthy exercise schedule. I feel sad, fat and ashamed of my body. While I'm trying to heal on the inside, I feel like I'm suffering on the outside. People look at me differently who haven't seen me in a few months. I watch their eyes scan over my figure and note when they register that I've gained weight. I can't fit into my clothes right now, and that's pretty depressing. We're going to the beach in a week, and I'm not sure what bathing suits I'll wear because I'm not sure if they'll fit!

I'm not revealing all of these sentiments because I want sympathy from others. I want others who read this to know that they're not alone in fighting the endo battle. Additionally, I want to point out that fighting endo means many things; it means fighting pain, lifestyle changes, mental attitude, and sometimes weight gain. I AM DETERMINED to beat this!

For starters, I have a plan:

1) Changing some meds:
I talked to my doctor about different pain medications, and we're trying a new NSAID medication called Mobic. It's supposed to help with inflammation and flare-up pain. You see, taking stuff like Tramadol can sometimes make me feel fuzzy or tired, so I hope that taking Mobic will relieve that pain without the side-effects of dizziness or fatigue. Additionally, I addressed possible neuropathic pain, and I've started Neurontin to see if that helps as well. After 1 month of taking both meds, I'll touch base with my doctor to see how I'm doing, and we hope that this provides regular pain relief so that I can maintain a more regular, pain-free schedule.

2) Changing diet strategies:
I downloaded a detox plan yesterday from Skinny Ms. (no, it's not one of those water with lemon plans--you actually EAT with this program), and a 30-day workout schedule that is comprehensive. On the Skinny Ms. website, there is a wealth of yummy foods that are healthy, full of fiber and "clean." I've noted that Skinny Ms. discusses "clean eating," which I think will help boost my body back to where it needs to be. I'm starting a 3 day (yep, just 3 days!) detox plan so that I can boost my metabolism, perhaps shed a pound or two, and start to feel a little more confident about putting on my work-out clothes.

3) Changing exercise strategies:
I always think that with working out, it's "go hard or go home." So either you go running or you do nothing at all. Which is bullshit. I need to remember that simply being active is better than sitting on my couch! In the past, I've been very successful with regular calisthenic training and cardiovasulcar training. In other words, interval training really works for me, paired with either walking, running, dancing, swimming--something that gets the heart pumping for at least 20-30 minutes. With this workout program from Skinny Ms. that I found, I think I'll find a nice balance so that I'm not pushing myself beyond my limits, and I'm able to keep up with the exercise schedule.

4) Changing my attitude:Gaining weight after a long, cold winter can be, well, depressing. There's no better word for it! But it's not the end of the world. I always think that if someone were to call me fat, I would retort: "Well, fat people can lose the weight; people who are assholes are usually just plain old assholes." When I look at myself in the mirror, I know that I'm not FAT, I'm just fluffier in more places than usual. My normal weight (170 lbs) is actually quite healthy for me even though my BMI chart says that I'm still "obese" at 170. I'm muscular and have a high bone density. I can wear size 8/10 clothes when I weight 170, so whatever. At that point, it's not about what you weigh, but how you feel. And I need to remember that I CAN DO IT. I can feel good about myself again.

---
My hope is that if you are suffering from hormonal weight gain, you can remind yourself that there is a light at the end of the tunnel. There are options out there for you. And I had to remind myself that "nothing changes if nothing changes." If I don't change my diet, my work-out schedule and my attitude, then I won't lose the weight. It's plain and simple.
Best of luck to all of my EndoSisters and EndoWarriors out there who are fighting the good fight! Remember always that YOU ARE NOT ALONE.

With lots of love,
JLK

Things I sometimes forget but shouldn't.

Endo is the liverwurst. (AKA: THE WORST)

I've been suffering from on-and-off pelvic pain in my lower abdomen for about 3+ years now. It sucks, but it's something I've learned to deal with. I hate saying that I "deal with" my endo pain, but honestly it's a place I needed to get to in order to negotiate my day-to-day life. I needed to find a middle place where I could, when necessary, reside and still have fun, make plans, go to work and live my life!

But there are some things that I forget, so instead of keeping my not-so-secret pain "remedies" to myself, I've decided that I'll share.

1) Poop. You have to poop.

Not having regular bowel movements puts extra strain on your lady parts. When you have endo and are still having your menses (some women have the Mirena--like me--to help stop menses and thus, stop continuous endo growth), your lady parts are inflamed. It's simple:
Endo + Menstruation = Ultra Inflammation = Pain
Endo(iflammation) + Full Bowels = More Pain due to increased pressure on inflamed parts of the body, like your uterus and ovaries.

So, if you have been diagnosed with endo, make sure you are drinking PLENTY of water, eating fiber, and pooping regularly. Here are a few of my poop tricks:

*Senna Tea: Not for the weak of heart. A natural laxative, senna tea or oil stimulates the bowels. Since I have IBS, this stuff can be a little too "potent" for me to stand, but it does the job if you prefer to use herbal products.
*Miralax: My personal preference. Instead of traditional stimulants like Ducolax (also the liverwurst), Miralax draws moisture into your bowels so that you poop pretty naturally. Remember to drink lots of water with it, and if you're on pain medication, it's a good solution to help keep you regular.

*Colon Cleanse: For those of us who can't get the job done with typical OTC remedies, I've heard from patients at my physician's office that Colon Cleanse can be a "life changer." You can purchase it on Amazon.com. I've never tried it, but others who have tried all else and failed swear by it.

2) Pee. Don't hold it in like you're trying not to say the f-bomb in your grandma's presence on Thanksgiving. (I've never been there....ever...)

You know when you're busy and forget to pee? Or you're sitting on a conference call so you hold it in and later on, you lose the urge to pee? Yeah. I've done that before. And later on, when I finally have to go, I REALLY have to go. And it huuuuuurts. Not only does it hurt for your bladder to be extra full and, like a full bowel, it puts unnecessary pressure on your inflamed lady parts. Thus, you have abdominal pain that you might have avoided if you took a regular trip to the toilet when nature calls. Just remember: in this case, yellow means go, not slow down.

3) Stay away from the following common "trigger" foods like:

*Alcohol. It's poison. Delicious and theraputic. Sometimes magically solves all of the world's problems except for the problems in your uterus. But essentially it's poison.

*Fatty cheeses. Like brie, bleu cheese, other high-fat cheeses. Which are my favorite. [sad face]

*Fried foods. Need I say more?

*Lots of caffeine. I HEART tea in the morning. Also coffee. Lattes. Espresso. Dear God, caffeine is amazeballs. But just make sure you aren't over-doing it. Like drinking a pot of coffee or having more than 3 "cups" of tea/day. Followers of the Endo Diet stray from caffeine because it can be a natural inflammatory.

*PAY ATTENTION TO WHAT YOU EAT AND IF IT HURTS AFTERWARDS.

No all "trigger foods" are the same for everyone. In fact, some folks swear by coffee with cinnamon to help. The message is to make sure you pay attention to whether or not you feel especially crappy after a night where you only had 2 beers with a healthy dinner. I've always had nerve issues after a night out on the town where my nerves would be extra sensitive and my forearms would "fall asleep" randomly. Since endo pain can be caused by "neuroangiogenesis" (when new nerve cells form with new endometriosis/blood cells), having more nerve pain after drinking beer was a definite "trigger" for me.

4) Stay hydrated. Drink water. Lots. Also remember to pee.

5) Try melon or berries. Cantaloupe is my "go-to." For whatever reason, it really helps alleviate some pain if I'm having a bad day. Berries and melons are natural anti-inflammatory foods.

6) When in pain, find ways to distract yourself.

For me, I get my fat pants on, a comfy tee, lie down on my couch with a tall glass of ice water or gingerale, get that heating pad going, and lose myself in bad Lifetime Movie Network movies like "The Surrogacy Trap" or "Lying to Win." Sometimes I call a friend. Other times I don't. Other times, my husband (God love him) will rub my feet or scratch my back. It helps me forget that I'm in pain. Forgetting isn't curing your pain, but it sure beats going to the ER.

7) Download a period app like "MyCalendar."

I don't care if you've had a hyster or not. I soundly believe that our bodies operate cyclically. Sometimes, I can almost pin-point with my app when I'll most likely have a migraine, have bad endo pain, or feel really tired. I don't get my period anymore due to being on not one, but TWO lovely hormones, but my pain is still quite cyclical. My pain is the (liver)worst right before I have to change my NuvaRing. And if I forget to get my new NuvaRing, I'm late on putting it in or whatever, DAMN does my uterus hurt. Pamela Beard (my uterus' name) get pissed off and lets me know about it.
Bottom line: don't think that because you're not menstruating that you will be asymptomatic. (I hope you ARE w/o symptoms!) But I'm saying this because often times women will have issues, call their doctors, and aren't sure how to advocate for themselves. For me, since I keep track of data on my phone, I can answer my physician's questions or point to possible links between my hormone therapy either working or not working. It's good to have that kind of information in YOUR hands. Because it's YOUR body.

8) Make peace with your uterus.

Having a chronic illness means there is no cure. It means you aren't fully in control. Neither is your doctor. You wish you were. You wish you could make everything better on your own. But you can't. Like the "Spoon Theory," everyday can sometimes mean that you have to make decisions that will effect today, possibly tomorrow. And the next day. For example, coming to terms with my pain means that I wish to have a social life again. If I start to have bad pain symptoms, I evaluate the situation: I could go to dinner with girlfriends or go home. No one would be angry or upset with me. But I ask myself: What would YOU like to do? If you are okay with fighting over that current wave of pain and meeting your girlfriends to see if you can make it through dinner, go for it! I've decided to come to terms with Pamela--by taking back some of my power. Which means that some days, I'll feel great and go for a run. Others I'll walk. Others I'll lie around on my couch. ALL OF THOSE CHOICES ARE OKAY. Your life will never be the same as it was before you were diagnosed. And it's okay. Make peace. Shalom.

Shalom, EndoSisters. Shalom and ahavah. [Peace and love]

 

Yes, I had ass surgery.

Sweet baby Jesus, I can't believe I'm saying it out loud.

But yeah. I just had ass surgery a few weeks ago from, what I believe, is due to chronic, long time effects of endometriosis. Including constipation, mostly. And possibly having abdominal pain that made it difficult to have a bowel movement without straining so hard.

Why am I telling you this? Because it's important. It's important that I confess what's going on with my body so that YOU DON'T FEEL ALONE in your own journey, struggles, frustrations. We are endosisters in this, together.

So about this surgery: it was a sphincterotomy and a banding of hemorrhoids that had been causing me a lot of discomfort over the last 2 years or so. Yes: I said 2 years. You see, because I've been so focused on having/dealing with endometriosis, I had neglected other parts of my body. For example, I have TMJ disorder, too. My right jaw joint is completely dislocated and does not "recapture." The other side is degenerative as well--which leads to chronic neck, head and jaw pain. But either way, getting back to the subject, sometimes being so focused on one health condition helps you either forget or, unfortunately, neglect other issues that you're also dealing with. And here's something I find helpful to mention:

Endometriosis can influence other parts of your body. (Yes, I've said it before: 'it's all connected.') But besides that point, endometriosis can correlate to other inflammatory diseases and conditions. According to "The Pains of Endometriosis" published by Berkley, Rapkin & Papka in The Science Journal:  In some women, pain can be exacerbated by the co-occurrence of other severe chronic pain conditions such as irritable bowel syndrome, interstitial cystitis, repetitive kidney stones, vulvodynia, temporomandibular syndrome, migraine, and fibromyalgia."

In my case, I believe that years of irregular and difficult bowel movements/problems have contributed signficantly to having a severe anal fissure and hemorrhoids. In fact, in my post-op session with my GI specialist, he made it clear that "that fissure was NOT going to go away on its own." Which makes me wonder: in what other ways our our bodies being affected that we're not even aware of. And further more, why am I so comfortable talking about my uterus, ovaries and fallopian tubes, but talking about my butthole is so seemingly "off-limits." Many of us diagnosed with endometriosis end-up either having bowel adhesisions, deep penetrating endometrial tissue in our bowels and growth in the pouch of Douglas or posterior cul de sac. Which means that our reproductive system is affecting, directly, the efficacy of our gastrointestinal tract.

I confess that I had surgery on my behind because, on one hand, I feel like an old lady. I've had 3 major surgeries in the last year. My PCP even remarked, at one point, "Jessica, your medical history looks like that of an old lady." SERIOUSLY? Okay, how about this: Fuck you. Yep. I said it.

But to keep it real, please don't neglect your other bodily functions because endo "might" get in the way. I almost ended up canceling surgery because my abdominal pain had returned and I was worried (and still am) that I may end up with another laparoscopy within the next year. I'm worried that I might force myself to make decisions about my reproductive organs that I don't want to have to make sooner than later--like either have kids NOW or think about the fact that I may become infertile within the next few years while I wait, quietly, with a Mirena implant and NuvaRing regimen.

Finally, I want to tell you today that my butt is doing better. So far. It's nothing like endo pain, but still: no one wants to feel like you're pooping razor blades. Nope. No one wants to know about that. But the point is this: don't feel embarrassed or ashamed to talk to your PCP or specialist about what's going on "down there." Because our "down there" is all connected. And I truly believe that until you can start to balance your WHOLE body health, focusing on one problem will not allow for another to go away. Was I nervous to have someone voluntarily cut an incision into my sphincter? Hell yeah! Was it worth it? Hell yeah!

I hope that--for many of you--your journey is either on a good, healthy path or you feel confident that your road to recovery is bright and full of opportunity. For others, we take 5 steps forward and 3 backwards. That's kind of how I feel right now. Yes, I'm considered a medical "success," but it worries me that I may have other (side-effects) of endo that I'm not ready to deal with yet. But fear only gets you so far--and by "so far," I mean no where.

Bottom line: don't ignore your bottom. Don't feel embarrassed to talk about it. Don't feel ashamed to have issues down there. And if you do, find A SPECIALIST who will listen, treat you with the utmost form of care and concern, and understand that you are an Endo Warrior, not just a(n old) lady with butt problems.

Cheers to you and your lady parts!

Pain, Pain, Go Away

I've tried hard. But not hard enough?

After my August 2013 surgery, I did start to feel the benefits of the excision process which eliminated growth around my right ovary, including an abdominal adhesion that planted my ovary against my abdominal wall and some uterine adhesions. Around October, I had some breakthrough bleeding which threw me for a loop. I was worried--like, "Am I falling apart?!" kind of worried. Mostly because I envisioned my Mirena breaking through my uterine wall like Uma Thurman furiously punching her way through a casket in Kill Bill: Vol. 2. Otherwise, I just hoped that the hormone therapy of both the Mirena and NuvaRing would eliminate my menses and, thus, help supress the abnormal endometrial growth.

Around December, I found myself suffering from occasional bouts of pelvic pain. Stabbing, sometimes throbbing, minimal bouts of severe pain. It all went away. And then came back. And went away again. I was in a cycle of increasing severe pain, and didn't want to have to go back to my steady Tramadol regimen. But I caved--I gave in. I emailed Dr. H about my issues and we went back with Tramadol for breakthrough pain.

But what happens if the "breakthrough pain" becomes, well, "all the time pain?" It's happened to me before for months at a time. The thought of unrelenting, throbbing, chronic, sickening, debilitating pain revisiting my lady parts for months and months was enough to scare me into a strict gluten free diet. NOTE: Enough to SCARE me. But not enough to motivate me.

I am a self-proclaimed stress eater. I love food. I gain weight somewhat easily. I am not the healthiest of persons. I am not obese, but I could lose about 20 lbs and feel great. Either way, here we are. Not quite a year after my last laparoscopy, and I'm already sitting here with the deep, throbbing, somewhat burning pain in my lower right side. And what am I doing about it? Because I am familiar with both pain and triggers of pain, I have decided to take 2 Aleve per day; start drinking more water; use a heating pad; eat gluten-free and start exercising. So I am doing something, but I'm worried that with my cyclical pattern of (bad?) behavior, I will ultimately keep letting myself down--keep letting my body down. Does this make me a terrible person? No. Does this make me a negligent human being? Possibly. Should I take better care of myself? Yes. But is there a definitive cure for endometriosis? No.

So the question: Is this my fault? Is the pain my fault? Is it in my head? (<--Hate this question, but don't act like you've never said it to yourself before.) Is this an endo flare-up? Is it a cyst?

I don't know. I don't know the answers to my questions, and until I see Dr. H next week, it's driving me CRAZY. The pain is driving me CRAZY. So perhaps the blog title "You're Not Crazy" should be altered to suggest that "you're not crazy--it's the pain that's driving you to think you're crazy." In the meantime, I just say to my body, pleading for relief: "Pain. Pain. GO AWAY."

And don't come another day. Just get lost.

 

"...we can do it your way, but DON'T GET CRAZY."

In need of some needling.

I'm traversing new ground. New possibilities. Hopeful outcomes.

I'm getting acupuncture on Friday.

While I have yet to try it out, I've heard that acupuncture is a valid form of pain management therapy for those who may suffer from chronic and/or bouts of acute pain. In my case, I have both (bad) bouts of acute pain from my jaw/upper back muscles and lovely gnawing pain that I have yet to combat in my lower, right abdomen (a place that is the constant source of endometriosis pain and, coincidentally, endometrial growth). Nevertheless, I am very much looking forward to getting "pricked" and "prodded" at a doctor's office! Let's call this a "first" of sorts in this regard.

I'll be getting my acupuncture consult and therapy at Gettysburg Holistic Health Center. As I spoke to the founder Lynn Roby on the phone today to make my appointment, and came to find out that Lynn is a survivor of a rare and deadly phenomena: a brain aneurysm. She has published a book entitled From Darkness to Light: my journey back from a brain filled with blood which I may get to after I finish Joan Halifax's Being With Dying: Cultivating Compassion and Fearlessness in the Presence of Death.

After speaking for almost 10 minutes with Lynn, while I don't know her personally, she revealed that she started the center due to having chronic, constant pain from having had serious brain trauma. As the operation center of the body, I can only imagine the kinds of headaches and body aches that she had to suffer through to get where she is today. She mentioned that yoga, acupuncture therapy, and a diet & lifestyle change truly helped her overcome her chronic pain symptoms. I am hopeful that someday I can say the same.

But for now, I have to admit that I'm kind of bummed that I still suffer from pain. And my attitude towards pain is becoming increasingly...well...depressing? After this last bout of therapy with my TMJD specialist, his recent relinquishing of his services to me in the midst of a terrible "flare-up" of face and head pain, I feel very desperate and lost. Sure, I have meds for endo which may help my head pain go away. Okay. Let me be honest: the ONLY pharmacological therapy that has helped is a combo of valium & percocet. So I admit to sometimes (over-dosing?) on my Tramadol just to keep my head pain in check. And I'll be even more honest: this is NOT good. Not good at all.

So in a moment, this week, of desperation, I decided a few things: 1) to call a TMJD specialist at a teaching hospital (UMD). 2) To start acupuncture therapy. 3) To keep up with Physical Therapy I guess as long as I'm allowed? 4) To keep up my bi-weekly deep tissue massages. 5) To start chiropractic adjustments on my back/upper spine to see if this helps alleviate some of my symptoms.

I know that TMJD and endometriosis could not appear to be more different, as the affect different parts of the body. But really when you think about it: it all comes down to inflammation, irritation and radiating pain. What does this sound like? Endo, hands down. So I'm taking another step towards healing my WHOLE body rather than just parts of it at a time. I am very hopeful that creating a relationship with the Holistic Health Center will lead to further lifestyle changes. Perhaps someone can help me more with anti-inflammatory diet changes? Who knows. But just from talking with Lynn briefly, mentioning that I'm starting to be more involved with local support networks, she was kind enough to offer her facility for a future meeting for the Central PA Endometriosis Support Network. Wow! What a nice offer up front before meeting someone! Thus, I guess it's nice to know there may be a place to host an in-person meeting for those of us who are in the Gettysburg area.

The point of this blog is to announce that I am--FINALLY--listening to Dr. H and looking at holistic healing methods to integrate into my therapy. While some folks adhere to a purely holistic lifestyle and others to a Western practitioner's lifestyle, I would like to allow for both East and West to meet, to work together. I am looking forward to healing my body, to getting back to the old, "in shape," healthy, happy and active Jessica that I knew not so long ago.

One thing that many people don't have to think about is how much having a disease, an affliction, a health problem (whether it be long or short term), really does affect your life and how you live it. You make plans, decline plans, work, don't work, vacation, postpone vacations, based on how you feel each day. It's really a day-to-day battle. (Wow, now that I think of it as a "day-to-day" thing, I feel a little bit more relieved!) While day-to-day means that I have to get through this day, perhaps it means that tomorrow might be better? I always like to be hopeful, and I know that days awaiting surgery are torture-like. At least, for now, I am looking forward to this Friday. I'm looking forward to physical therapy tomorrow and to Friday's combo chiropractor/acupcunture date. I also look forward to seeing how I feel on Saturday and possibly seeing what additional "tips" I can pick up from either physician about dealing with chronic pain. They say your lifestyle depends on how you style your life, how you live it. Well, right now I think I'm only doing the bare minimum to keep living--not to improve it. Perhaps this experience will propel me to seek beyond expections, just like I do in every other aspect of my life. Either way, I'm hopeful. And sometimes hope is all you need.

Confessions

Today I wrote a long email to Dr. H. and confessed.

Today I confessed how bad my pain was before surgery. And also that the medication that he prescribed me for three weeks was taken. In three weeks. Because it was bad.
Really bad.
Today I confess that I'm worried the pain won't go away.
Today I confess that I don't know what else to do at this point.
Today I confess that I am trying to be strong, but it's hard.
Really hard.

I lost 16 lbs since June. Not because I was trying. But because of the nausea before surgery. And now, after surgery, I don't eat much because of the pain. Because I'm scared that any extra pressure in my bowels will just make me feel sick.
And I feel like a chronic complainer. I feel inadequate when I tell my husband "I can't do (fill in the blank) because I don't feel good."

And then when he asks me "why don't you feel good?" I just want to scream at him.
I confess: I do scream back: "WHY DO YOU THINK I DON'T FEEL GOOD?!!!"
So now the protocol is when I say "I don't feel good," he must respond with a mechanical: "Is it Pamela Beard?" I will reply with a sound, "Yes." Conversation: over.

Today I confess that I'm worried about my body becoming addicted or immune to pain management tactics. Like drugs. Meditation. Breathing. Heating pads. Stress eating.

Today I confess that I strive to lead by example. And I'm not worried about the example I'm leading for my students--it's more for myself. When is it okay to get up and leave work? When is it okay to call off sick? When is it okay to "suck it up?" When is it okay to take pain meds when the world is telling you that you'll become a drug addict?

I confess: I wish men had uteruses.
I don't know what difference it would make. But, like all things, isn't it easier to understand someone when you have the tiniest idea what they're going through?
I confess: I wish all people held virtues of compassion. But the truth is, they don't.

So Dear Dr. H,
I'm an over-achiever who thought this (third) laparoscopic surgery would be a piece-of-cake.
I confess: it is not.
Help?


 

Post-Op: Ain't nobody got time fo' that!

A letter to my Lady Parts: Part II

We did it, Pam. We got through surgery. We found out that, within a year's time, our endometriosis goblins had grown back. And like a super hero, Dr. H and his handy little robot removed the nasty growth around our right ovary, fallopian tube and some crap growing in our posterior cul-de-sac near our poop chute. The success of surgery? Aces.

But do you feel okay? Because--let me be honest--I feel like shit. It's been taking a long time to heal, too. I shuffle, scoot and hobble around my house like an old lady. In fact, I've been day-dreaming about a walker. At least a bedazzled walker. All white rhinestones, of course.
Is this bad?

I have sharp pains in my right side, still. It's been hard to keep normal working hours (which is unbelievably frustrating), and so I've been at the mercy of my body. At the mercy of you, come to think of it. (Dammit, Pam!) I mean--it's not like it's your fault or anything, so please know that I ain't mad atcha. But if you're curious, when I need to go #1 or #2, I feel the wretched pressure of pain and cramping that would better off suit someone whom I disliked. Unlike most people, I would wish this pain on my worst enemy--because it goes away eventually, at least. I don't want to the world to think I'm a horrible person or anything, but now that I'm thinking about ways of torture...

Back to the point: We had Stage II endometriosis this time. Not as bad as last year, but think about it--that was ONE YEAR AGO! A whole lotta crap grew back in record time, and I think we did everything we could have done to prevent it. Like the Mirena IUD. By the way, I've been meaning to ask you: How do you feel about this? I mean, I think you're having cramps because of Ms. Mirena, but I haven't had the time to ask. If you think about it, let me know. I've been bringing my heating pad to work lately just in case. In fact, it feels rather nice as I write this right now, doesn't it?

Secondly, I met with Martha yesterday--our Physician's Assistant who is balls in my opinion. (Oh yes, sorry Pam, I'm using masculine terms of endearment, but "balls" means "tits" and "tits" also means "awesome." So Martha, in other words, is awesome.) She explained that Dr. H did a lot of work on our right side--like, a LOT of pipe cleaning. She showed me the pictures of our ovaries and fallopian tubes on the right. Of course, I didn't know what the hell we were looking at, but being the nerd that I am, I insisted on seeing visual evidence of the growth that was making us so sick we've lost almost 12-15 lbs in the last 2 months. Lemme tell ya--it was gross. Our right ovary was literally stuck to some other muscle wall--they call that an "adhesion." And there was a white, bumpy layer of gunk surrounding everything. Like I said, though, Dr. H licked it out of there. (No, not literally licked! C'mon, Pamela. Head out of the gutter, please. This is a serious conversation.) Either way, after removing all of the crap on our right side, it turns out the left side was virtually clean from any signs of endo. High-Five! (Or is it "High Uterus?") I don't know how you do things down there--it's not like you have hands or anything, but if you had an appendage to slap, would that be an ovary?

You should also know that there was a mass of growth in the posterior cul-de-sac. I think they also call it the "Pouch of Douglas" or something. So much for a pouch. If I had a pouch in my abdomen, I'd at least want Tory Burch to design it. Or Marc Jacobs. It would be sparkly and fun--possibly purple or cobalt blue. Yes, a cobalt blue P of D with crystal embellishment. Tasteful embellishment. Not like "My Big Fat Gypsy Wedding" or anything. In the meantime,
the lessons that we should share with our Endo Sisters in pain are:
Eat a soft diet with little meat while you heal.
Drink tea--without caffeine--preferably fresh herbs in hot water (a combination of: mint, rosemary, lavendar, oregano, basil, thyme) Some of these fresh herbs have anti-inflammatory powers. Also it helps you stay hydrated.
Make yourself a "nest." In other words, make a comfy place where you can lie down with your torso lifted up slightly and a pillow under your legs to help the gas flow towards your bum. As in: help yourself fart. You will feel MUCH better!
Gas-X RULEZZZZ.
Take Colace.
Drink plenty of fluids--not sugary shit, but water, tea, whatever. Fruit juice is okay in moderation to get some calories while you heal. A gingerale is nice every now and then, but I am wary to drink carbonated beverages while dealing with internal gas problems.
The "gas pain" is probably the worst part. Something I wouldn't wish on my worst enemy, in fact.
Get a neck/shoulder massage--preferably someone who can come to your house and massage your neck muscles while you lie, face up, somewhere dark, warm and cozy. Hopefully they won't try to get fresh.
Have people "on call" to take care of you. Trust me: you will need them.
Be open and honest with yourself. And your boss. No explanation needed, I hope. You are NOT Superwoman. Although I know you try...
Call your doctor. If anything seems awry. If you're spotting--bright red, heavily, whatever. If you have unusual pain. If, like me, you find yourself with a knock-down drag-out cold in the middle of healing. Your doctor's office will advise you what to do both homeopathically and if you can take additional medication.
It gets better. It's cliche. But it's also quite true.

So that's our story: We weren't crazy after all! Again. Be wary for now, my friend, but heal fast and let me know if I'm doing too much around here. I'm trying to take it easy, but as it turns out, there's only so much Lifetime Movie Network I can watch and the latest fantasy-romance novel I picked up has sucked me deep into a fictional portrayal of 18th century Scotland. I think you would like it, but it's already made me cry. More than once. And with our weakened, healing abdominal muscles, all I can say is: Ain't nobody got time fo' that!

What we do have time for is knowing that we have time to wait for babies. The baby factory has vacancy, but is currently not open for business. As long as you're okay with that, so am I. Be in touch, Pam.

Love,
Your Endo Sister

Dear Pamela Beard: A letter to my lady parts

Just to avoid any confusion, "Pamela Beard" is my nickname for my uterus. I mean, guys name their man parts, right? Anyways...

-----------

Dear Pamela,

Hey girl. How are you? Just from how you've been acting around me lately, I'm gonna go ahead and imagine that you'll tell me things are "fine." But when you say "fine," I know that you mean things are not fine. I know you're not doing so well right now. It's okay to be honest. In fact, it's why I'm writing you.

Pam, I'm scared. I'm scared for you. I'm scared for us. I'm afraid that because we've both been sick lately, we'll find ourselves in a most precarious position. And by "precarious" I mean infertile. YES, I KNOW we've talked about this before, and you tell me not to worry! You tell me: "You can achieve your professional dreams and wait to have babies. You don't have to hinge your femininity upon your ability to procreate. If your fallopian tubes are too scarred in three years, you can always look at adoption. The world doesn't have to end here." But Pam, I'm worried. I'm worried that, while I obviously have dreams to become Dr. Knouse someday, I'm going to look back upon my life and ask "what if?" What if I wouldn't have waited to have babies? What if I wouldn't have had that abortion in college? What if I just said Fuck it and decided to take my Nuva Ring out tomorrow? Am I allowed to dream of having both titles of "Dr." and "Mom?" Or must I choose only one option.

Am I being an asshole by thinking I have the right to choose to gamble with my fertility? I know women who are struggling with becoming pregnant. I know amazing couples who want nothing more than to be parents, but still have challenges conceiving both with and without medical intervention. When issues like this arise, I think to myself: Am I wasting away my precious fertile years? Am I an asshole?

Pam, we're getting surgery soon. Perhaps within the next 2 weeks so that we can recover before our students come back for the fall semester. We're getting surgery--only 1 inscision this time!--and Dr. H says he'll check on the status of your health, our ovaries, and fallopian tubes. I was sure to express my concerns to Dr. H about fertility since you, me and the hubby will be thinking about this in the next two years, possibly three. I say "my concerns" because I know you're a lady of leisure; you've told me before that you don't mind not having a job and that baby-making is my decision, not yours. I appreciate your laid-back approach to this situation. It keeps me balanced, I think.
I should also tell you that we're getting the Mirena IUD, so be prepared to have a roommate for a while. I know you prefer to live alone, and have managed to successfully reside as neighbors to my Nuva Ring for the last year and a half. The Mirena will prevent pregnancy for up to three years, so you'll be living together for a while. But hey, "Mirena" seems like a nice name. I hope you gals can become great friends!
I have to mention this--just so you're aware--that if Dr. H looks up inside of us and thinks that we look like a "mess," then he'll let us know that we should think about family planning sooner than later. Your "lady of leisure" days will be numbered. I just thought I'd give you a heads-up about that--you know--because we're besties.

Oh, Pamela. I'm scared. What if it is a mess in there? Or what if nothing is wrong? Then what? Am I crazy? Is the ridiculous pain, nausea, bloating, fatigue and discomfort all just in my head? I hate that I have to ask these questions, but I do. After all the shit I went through last year, I still question myself constantly. I know this isn't healthy, but what else can I do? I had doctor after doctor tell me that I had "nerve entrapment," or a "bad back," or "Irritable Bowel Syndrome." That "we'll treat you for endometriosis," but at the end of the day no one really knew what was wrong with me. Then we met Dr. H. I know this might sound silly, but I don't want to let him down; I want to get better, but I also want him to find endometriosis in this surgery. I don't want him, the best doctor I've ever come to know, to think I'm crazy, too.

By the way, I hope that (between you and me) this next surgery works. I'm so incredibly tired of being in pain. I'm tired of looking at my "Leave Balance" at work and fretting that I don't have enough time to take-off to have surgery. I hate that I might miss out on this up-coming conference because, well, what if my surgery falls upon the date of the conference? Sure, I can probably get a refund. I can re-book my flight. I can look for other professional development opportunities out there. In the big picture, it's not that big of a deal. But if I want to be honest, I'm sick of being scared to make plans. Again. This was the life I lead last year--it's not supposed to happen again. This year.

Pamela, if you don't know this already, I should tell you that endometriosis never truly goes away. There is no cure. Research suggests that pregnancy may have a greater chance of lessening growth, and only in some cases, it may not return after a woman is pregnant. But not all endometrial cells are created equally. Like cancer, endometriosis cells can regenerate "mildly, moderately or aggressively." Thus, even if we did get pregnant, there are no guarantees that this will stop our pain. We might have to get a hysterectomy some day. Possibly in our 30s if we do have babies within the next 5 years. (I know you don't want to think about it! It would mean we'd be breaking up for good--for life. Don't worry; it's not a decision that I'll make lightly, and I'll be sure to consult with you first.) It's not something to dwell on, but it's something to think about. I mean, the more I talk about this to women, the more I find that so many women have had a hysterectomy or some form of laparoscopic excision/surgery. It's nuts! On the surface, I feel so alone, but once you begin to dig a little deeper--once you begin to peel away the shame of having "lady part problems"--I find that I'm not so alone. There are many women out there in our situation. We have to remember that. Always.

I know you may not be able to write back right away, but if you can, please tell me that I'm not crazy. Please tell me that I'm not an asshole. Please tell me that I need to relax and wait until our surgery is complete so we know our next step. Please tell me that I am lucky to have support systems--husband, family and friends--who support me and want me to recover, to be "okay." Please tell me that sometimes the greatest thing we can do as humans is to "let go" to the feeling that we have to maintain control over everything in our lives. Please tell me to let go. To have hope. To understand the meaning of grace. And in the meantime, to get some damn sleep.

Thanks for listening, Pamela.

Your friend,
Jessica

Emergency.

To be clear: I hate the Emergency Room. I hate the feeling of helplessness that permeates the space between myself and the standard changing room curtain. I hate the chill of sterility. I hate being prodded by med students (sorry to my cousin Caiti who is currently in med school!). I hate repeating myself over and over and over again. I hate feeling like someone is going to walk into my room at any minute and tell me that I'm crazy for being there. That because I'm not dying, I should stop taking up bed space and go the hell home.

But as much as I hate the Emergency Room, I sometimes find myself there. Two weeks ago, I found myself in the Hershey ER with severe abdominal pain and a sense that if I strained my bowels or my bladder, organs would start to fall out of me. It was bad.

To keep my story short and sweet, I was doped-up on Dilaudid and still in crazy pain. It felt like both ovaries were burning and the stabbing, throbbing pain crept all the way from my belly into my upper thighs and down my legs. I had only ever experienced pain like this a few times before; it felt like I had an ovarian cyst. A few hours after being heavily medicated, I finally had a transvaginal ultrasound. The results? Nothing. Well, nothing remarkable.

Because I'm super nosy, I always ask the technicians what they see on the monitors. I mean, if someone is sticking a big ole plastic wand up into my vag, I wanna know what's going on in there! Even so, the "charm-free" technician acted like I was a nuisance and said: "It looks like you had a large follicle on the right side that is folded in on itself."
I think: "Oh, could it have been a cyst?"
She says, nonplused, "No. It's normal."

Great. So I'm in the ER for no reason? No Jessica, don't start thinking you're crazy again. (This is what I have to keep telling myself.) Meanwhile, back in my chilly "holding cell" the doctor returns to tell me that it very well could be endometriosis flaring up again.
Great...

I'm writing this blog today not to claim my return into a "decline" of health. Rather, I'm writing this because I wanted to point out two things. First, I'm pretty sure my endo is flaring up again. I'm pretty sure that it's because I'm majorly stressed out. I'm pretty sure that when I'm done with this semester, I'll probably start to feel significantly better. Secondly, I freaked out. My doped-up ass starting bawling at the thought that my endo was back. (It never truly goes away--duh!) I started freaking out, thinking: "I'm gonna have to go back on Lupron! I'm gonna have to have surgery again!"

Ladies, I ask you: Have you ever felt like this? Say, after having surgery, after keeping things under control, have you ever freaked out because you thought your body was in severe decline, worrying that you were starting all over again with treatment?

I hope the answer is yes. But I commend you if your answer is no.

Ladies, I tell you this: Stay positive. Honest to goodness, keeping a positive attitude over the last few months as I started to feel pain creeping into my abdomen again, has been the only thing that's kept me afloat. I write this to you after finding myself in the ER again, thinking for a brief (and drugged) moment that I was a helpless victim of my body. After sobering up--and vomiting the whole way home from the drugs (always ask for Zofran before you leave the ER if you've been given pain meds)--I realized that I was going to be OK.

I think back to myself a year ago. I virtually let endometriosis rule my life. It was a horrible experience, and I thought often about killing myself because I had been in so much pain without relief or a diagnosis. (There, I admitted it--FINALLY.) But now, even after having found myself in dire straights, I can tell you that I'm FINE. I'm ok. I'm gonna make it. I'm not depressed any more. I'm well on my journey to discover who I am. Recently, the President of the College (I work at a college) commended me on my professional success and mentioned that the "little girl-ness" inside of me had finally matured into a professional example of leadership. WOW. I'm paraphrasing, but the point is this: NEVER GIVE UP HOPE. Even when you find yourself in familiar territory like the ER. Even when you have submitted your body to scrutiny again. Even when you're pretty sure you're going backwards rather than forwards, NEVER GIVE UP. You'll be ok!

In the meantime, do whatever you have to do to stay positive. Talk to your loved ones about your fears. Talk to your doctor about your concerns. Go for a walk. Sleep late. Read a trashy romance novel. Reach out to anyone whom you know has experienced endometriosis or cysts. Comment on this post! If anything, send your cosmic question into the universe through virtual networks. There there are always resources that can help. I recommend the Facebook Page for the Endo Research Center: https://www.facebook.com/EndoResCenter

After I graduate, I hope to help establish a Central Pennsylvania Endo support group. If you know of any resources, feel free to share! If you live in south-central PA, feel free to reach out! jknouse05@gmail.com

Always remember: you are not alone. Don't give up hope.

My loving, supportive husband, Justin, has been an important part of my recovery. This is a picture of us (making plans and having fun!) at a Penguins game in Feb 2013. Go Pens!

Getting to Zero: Thoughts on Recovery

"To let go is to admit powerlessness. Which means: the outcome is not in my hands."

 

 

I am not a god. Or goddess. I cannot see into the future or predict Michelle Obama's next fabulous outfit. But sometimes--in the dark, secret moments of night--I wish so badly that I could see into the future. Into the infinite possibility of tomorrow.

Because then, maybe I could figure out how to be an endometriosis success. Maybe with this knowledge, I could help myself get out of the negative cycle of feeling good/feeling bad/feeling better/feeling worse. Maybe I might know how to recover.

 

Recovery. There's a tricky thing to say. I once wrote a short story about recovery post surgery:

"If only I could recover here. Recovery. Recover. Re-cover. To find something I have lost. Overy. Over. . . I split word and morpheme to make meaning, my own. Recovery: to choose sorrow or separate yourself from it."

 

For a few months after surgery, I found myself in a precarious position. I was not sick. I was not in pain. I wasn't overly tired or consumed by overwhelming nausea. I was...okay. After living for almost eight months of feeling like I had a knife stuck in my uterus, I finally found myself opening up, body and mind, to the single, perfect feeling of "relief." I was recovering. What we don't tell ourselves after we begin a regimen of health consciousness is that we'll someday feel better. And when we do feel better, it's like the world has been reopened to us, blooming in full like apple blossoms in springtime. 
So here is my question: Why did I feel so depressed after recovering? Why did I choose not to separate myself from the sorrow of feeling victim to my own body? Here's why: When you recover, your life changes again. You begin to feel like the need to be a social hermit is minimized. You begin to realize that you can make dinner plans. That you can stomach dessert. That you can have fun and live your life again. AGAIN. Meaning: you have to introduce yourself to this "new" person--this new you--who is learning how to reorient and renegotiate social boundaries all. Over. Again. And it's hard!

 

Not to "boo hoo," of course, but I feel like getting back to Zero has been a rough road. I say "zero," meaning that when I feel at Zero, I am at a zero on the pain scale. You know, the scale that literally ruled my existence for the better part of a year. It's tough to reside in a place of neutrality when you are so accustomed to the disease and anxiety of your social scale. Being ready to not make plans is a function of stability for a sick person. It's a function of control over a body that is seemingly control-less. Not knowing what to expect becomes a (albeit paradoxical) routine, and feeling like the pain always binds you to the uncertainty of making important life decisions becomes a force of corporeal habitude. In other words: being "above zero" was difficult, but over time it becomes part of your routine. And you adjust to the phenomenology of your body to make illness your 'norm.'

 

And this is where I suggest, too, that being "less than zero" indicates that I have felt--I can't believe I'm about to say this--a mourning for the illness that, for a time, controlled my life. It's so strange to feel a certain sorrow or sadness for feeling sick, but eventually "being sick" becomes part of your identity. You learn how to be sick because being healthy isn't an option.You begin to view yourself as a sick person rather than seeing the possibilities for yourself as a patient in recovery.

 

I also want to be clear and mention that, while I was in recovery for a few months, I have recently noticed some "bad" changes. I feel as though I may be headed in the wrong direction. As of the last few weeks, I have started feeling...weird...sick, maybe...again. I've started having bouts of nausea and migraines. I've had a few intermittent experiences of brief--but unbelievable--abdominal pain characteristic to the pain I had felt before. I start to wonder: "Okay, am I regressing and going back to feeling like poop?" To confess, a part of me is almost relieved to feel sick again. A part of me thinks: "At least I know how to function when I'm sick; at least I know what it's like to withdraw from the world."

 

I write things like this, and then I shake my head--I know that I don't want to be sick! I look at pictures of me from 2009, 2010 and 2011 until I had my hormone therapy. I had so much fun, I looked so healthy, I loved life! I don't want to go back to being a shell of my old self. No, sir. I do not.

 

So I have to keep thinking positively, yet realistically. Like my initial quote suggests, I cannot control my body; I am (ultimately) powerless to control every facet of its biological function. All the while, there are some things I can do to help myself stay less symptomatic than I was a year ago. Like eat gluten-free/Paleo diet. Or exercise. And meditate. Do yoga. Go to parties. Have parties. Brew beer (but don't drink it...no...don't drink too much of it!). There are positive ways to help myself get out of this funk and get back to zero! I just have to remember that.

 

Just to keep it real--not necessarily to end of a negative note--I do still wonder about some things:

Question:
I'm worried that my endo will come back. Full force. Worse than before. I'm worried that when it does come back (ok: IF it comes back), I'll feel too defeated to want to do anything about it.

Answer:
I know in my bones--also rationally--that I will totally be proactive about treatment. But...if I'm not living up to my own expectations of health (by eating right 90% of the time), how do I stay accountable to myself without a proper network of support? Maybe there are some answers here that can be explored by getting myself involved in more reading, research and outreach.

 

Question:
What if I want (the pain) to come back? What if I liked some of the attention I got from feeling sick? What if I got comfortable being sick and don't want to really change?

Answer:

I know that this thought comes from a place of apparent uncertainty. Again, I'm keeping it real, people. I admit that I did become rather accustomed to feeling sick, and I did learn to cope with the pain, the nausea, the constipation and peeing all the time (luckily not in my pants). But I only worry that feeling depressed from learning to be "me" again is probably more of a natural reaction than I have previously considered. Perhaps I still have to give myself some time to settle-in to my "new" self. Perhaps I need to learn how to forgive myself for not being the fit, healthy, runner self I was a few years ago.

 

Question:
On that note, I am not really the same person I was a year ago. What if I'm okay with being more introspective and introverted? What if I'm just not ready to run a half marathon again? How can I be "me" again if I'm not really sure who "me" is right now?

Answer: First of all, I'm not the same person I was a year ago. And I mean that more than just on a cursory level. I mean it: my priorities are not the same as they were before. I don't put friends and experiences so high on the prioty list. I'm concentrating on finishing graduate school and my profession. I have to be more introverted to survive my present goals. I have to be more serious about my priorities if I'm trying to advance myself professionally. And, NO: I'm not the same Jess I used to be. I don't party as much. I can't really drink beer. I don't go out as much, and I'm not into smelling like a smoke stack when I get home. Honestly, maybe this experience of illness was a positive thing because I learned how to be "on my own" rather than depending on my social network to energize my batteries. But to be fair to the "old" me, I do miss being social. I miss some of the friendships that I had cultivated, and I see that being introverted really does hurt the stamina of your social relationships. To that end, I'm honest when I say that I'm not sure who "me" is right now. But I'm interested in finding out who that person is --not for the sake of the future or for the legacy of the past. Rather: for today.

 



Triggers

For almost a year, you suffer from chronic pain. And then you have surgery. You heal. You feel better. You aren’t in pain every day. So…what now?

It might seem like a strange question to ask: what do after the pain subsides, the constant nausea goes away and you don’t wake up 6 times to pee in a night? About three months after surgery, I realized that my life had significantly changed—again. This time, however, the change was for the better. But I had to transition into a healing phase, and that was also somewhat challenging. For example, over quite a few months, I had all but isolated myself from socializing outside of my nuclear family or work. I have to admit that it was kind of weird to start making social plans again, to have an alcoholic beverage or stay up later than 10 p.m.! I thought: “Shit, I wasn’t just sick. I’ve aged about 10 years!” While I was elated to be able to have more flexibility in my life, more mobility, my body had to adjust to being active again. This, however, is a great problem to have.

I still wonder, too, if my pain will return. Most recently, after months of feeling pretty great, I had forgotten to change over my Nuva Ring. Without getting into too many details, I began menstruating again—something my doctor recommended that I try my best to avoid. I thought: Oh well. No big deal.  I mean, I’d felt great for so long that I’d forgotten what it meant to have abdominal pain.

Big mistake. Almost immediately, the pain returned. I caught myself clutching my lower abdomen again—a habit I had acquired pre-surgery. It. Fucking. Hurt. Suddenly the fear had returned: What if I need to go to the Emergency Room! I don’t want to see that bitchy nurse! Yes, these are the exact concerns that ran through my head. They’re gonna think I’m crazy again! No—you’re not crazy. You’re just lazy.

Luckily, this bout of pain only lasted a few days. At some points—mainly when I was stressing out—I felt the sudden, sharp pangs shoot through my insides. And then there were moments after I’d eaten something I shouldn’t eat (like Wege Party Sticks—like nectar of the gods), I’d start to get the creeping, burning sensation in my lower abdomen. And finally, I noticed that my bathroom habits were way off. Cue the small bladder syndrome. Cue the need for Miralax in my life.

Over the past few months, I’ve been trying to pay attention to my “triggers.” Your triggers are things that do two, basic things: 1) facilitate inflammation and 2) activate pain. This is why it’s very important not only to follow the habitude of constant and consistent birth control, but also to forego certain foods or beverages. Your doctor should be recommending that you take birth control without skipping the week or taking the placebo pills—just go right into the next packet. Or, like me, change Nuva Rings after 3-4 weeks before menstruation. I didn’t know that being amenorrheic was such a crucial part of decreasing the likelihood of endometrial tissue growth. Basically, amenorrhea prevents uterine lining from shedding, re-growing, and shedding again. The growth cycle is stunted, thus, less chances that the endometrial tissue is growing in the abdominal cavity. Additionally, menorrhea causes the lower abdominal cavity to become inflamed. So whatever is growing in there that shouldn’t be will also cause pain and discomfort in your abdomen, as well as interrupt your normal bowel or urinary functions. Again, to echo Dr. Harkins, “it’s all connected.”

For women who are thinking about looking into the “endo diet,” which, I’ve found, is basically like eating a gluten-free diet which also limits fried foods and cheese (foods with high fat content), I strongly recommend trying it out. I admit that I don’t follow it to a “T.” I have drastically limited my intake of grains, mainly processed grains like white bread and pastas. Sure there are times when I indulge—I’m human! But knowing what I should eat helps me understand my body’s reaction to when I eat what I shouldn’t eat. In other words, if I make a solid effort to eat only the foods which I know will help decrease inflammation (like leafy greens, melon, or anti-oxidant rich berries and other fresh foods), I can actually feel the difference. So when I make a choice to eat that slice of cake or munch on those ever-so-delicious pretzel sticks, I can actually feel my body reacting (negatively) to these foods. I feel a twinge of pain in my side. I sense a bit of nausea. Almost like my body is rejecting those foods! *Shakes her head* Of course, that doesn’t prevent me from resisting desserts. Or Wege Party Sticks. So instead of denying myself foods that I love, I simply limit my intake.

In addition to certain foods, I’ve noticed that alcohol induces pain—especially beer. I know! No beer?! Yes, folks. I have pretty much given up beer. And I’m actually ok with it. I guess after you give up a certain beverage for a while, it’s not so bad. Also, I can’t really hold my liquor any more (another reason why it’s challenging to socialize with folks my age because we want to meet up in bars “for a drink!”), so I’ve found myself drinking much less.

Finally, I will simply say that if you feel as though you might be suffering the pains of endometriosis or have already been diagnosed, lifestyle changes are inevitable. Changing your diet is effective, as well as hormone therapy. While not everyone’s body is the same, sometimes it helps to know that small remedies make a big difference no matter who you are.