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.