Chronic Ama

We caught the rain on the way back from Phoenix this afternoon. It was the usual day trip to see my pelvic pain and surgery specialist. This visit was far from usual. I caught myself wanting to pull over or, at the very least, stick my head out the car window and feel the cold hard rain wet my hair and pelt my carefully painted face. I wanted to physically wash away the worry and stress that came with these trips. I wanted just to feel the world around me from this new perspective. I have no where to go but up now. It may be that I have reached the pivotal point in my health where I may be in the clear from the recurrence of endo. The bleeding lesions may never appear again. I truly wish this to be with a degree of foreseeable certainty, but I'll take the large chance I now have of never seeing this brutal disease grow inside me again. And that small sliver of uncertainty and doubt can go in the trash. Really. I don't need that doubt. I need the clarity. I'm moving on f

This week I'm focusing on moving forward. Even with the beginning of a new month, I have felt stagnant and unable to step out of my comfort zone. I don't like always being in my comfort zone because my heart and mind long for so much more.  It's amazing how things work themselves out once you relinquish your hold on correcting them. Sometimes a deep breath and stopping in the moment is all it takes. Now, I think I am able to take better hold of my health, even if there is still a rough road to travel. I can see how all things are connected and I have a plan to make it over that hump. My goal is to have both my migraines and my leg pain well controlled by June.  First, I am trying new meds and starting physical therapy again. I am back on muscle relaxers to stop a lot of the spasming in my hips. It has helped tremendously in the last few days. I am also back to wearing this cursed abdominal binder. I never wear it long after surgery because it's uncomfortable.

We drove to Phoenix yesterday for my post surgery follow up. I was a little surprised to find out that the pathology report came back that the excised tissue was not endometriosis. It was scar tissue. That was actually a bit of a relief that I may be in the clear now to move forward a bit more. I did find out that my continued pain is from muscle spasms. I am full of scar tissue (adhesions) in my pelvis. None of it was excised with my last surgery as it has worked to hold things in place in places that I've lost organs. OK, makes sense. Apparently the scar tissue can trigger muscle spasms, which causes pain. Not all hope is lost! We're hoping that a combination of medication and physical therapy should alleviate the pain. And even if that doesn't help eliminate the pain, we have a plan in for other things that can help. Now I'm just waiting to be scheduled for physical therapy again. I'm also going to keep trying my best to be active. I've been really

There are distinctly two different mes. I am forced to love them both. One side can get out of bed in the morning, have coffee,get dressed. The other me can't lift her legs out of bed. Shes a prisoner in her own body. Shes so full of medication, the world spins around her. She uses all her strength to shower. The first shower in two days. Her hair has finally been washed. She rubs body cream all over, even though her own hands on her skin hurt. The movement hurts. Standing becomes difficult. A clean dress instead of pajamas just to feel somewhat normal. Back in bed she goes. The next hurdle is to rehydrate. She fights back tears many times today. Sometimes the tears win. She's back in bed now, just wishing she could find the strength to get out of bed again. Comb her hair. Try to eat. She wants her children home with the normal her. She wants another dinner like last night. Happy. Healthy. Living. Because today isn't living. Today is trying. Coping. A test of w

Sitting in a hotel in Tempe, Arizona this evening waiting on my husband to get back with dinner. I have to travel to see my pelvic pain specialist, as you probably know by now. I am nearing the end of my three day stay here to have my second laparoscopic surgery with this doctor. We were hoping this would be the start of figuring out my health decline. In addition to pelvic pain, I have debilitating migraines and what we think are symptoms of fibromyalgia. This is the beginning to answers and to healing that hopefully brings me a longer spell of good health.  I'm going to rewind to the beginning to December here (soon, i'd like to rapid rewind to document my female health journey). I had another follow up with Dr. Desai to discuss my worsening pain. She gave me two options. The first was pain management and physical therapy. The pain started when I was still quite active, running and walking on the treadmill as often as I could and also doing stretching and core streng

The pantry was definitely my inner self forcing me to live that metaphor. I feel like everything is a mess right now. There's so much going on. So much noise. So much on my plate. We've gotten through this before. It's the little victories that pull us through. Saturday evening and ran a quick errand to pick up some much needed medicine. I ran into an old coworker that really brightened my day. It was nice to see someone that I enjoyed working with. It was even super cool that she wished me a happy birthday, remembering that our birthdays are a day apart. It's those little details that people remember that make you feel good. After the nice conversation, I headed home. On the corner of the street on the way home I see a little blonde girl with her dad standing, holding a Girl Scout Cookie sign. It immediately made me think of my Bellini and her dad. They were such a perfect cookie selling team. It's been bittersweet not selling cookies this year. I had to stop a

  I've been doing that thing again where I start to write, but then the idea gets lost somewhere and I never finish it. My list of drafts is getting pretty long. At least I have quite a few tidbits to read through in case I ever need an idea, right? I've been thinking about blogging about how my make-up routine changes drastically the more my "spoonie" days show up. Honestly, there isn't a thing in life that endometriosis hasn't changed. It's overwhelming to think about. I've been sort of breaking things down in my head. Make-up for starters. The way I dress has changed. The things I eat changes weekly sometimes. Relationships and friendships change. Really, this list can get huge.  I'm sure you know by now that I love make-up, especially make up in bold, different colors that I can play with. I live by the idea that a day without eyeliner is a day wasted. I like my eyeliner, but there's just some days that getting on face cream i

I long to be on the go, to be outside in the warm January sun. I want to finish all the things I've started today.... the laundry in the washer, dryer and couch. The dishes in the sink from breakfast and the freezer meal prep this morning. The pantry in need of a clean out to make dinner menus and put away today's groceries. The little details I've started in the patio in acrylic paint. Lastly, my planner in need of my inked ideas for getting through the next week and a half so I can begin planning my recovery. I feel robbed and almost victimized by my illness right now. More so because it feels more than evident that something else is at play. My feet and hands hurt badly. Last night, I clung to my husband's chest as the lower part of my back tightened and released again and again for what seemed like endless moments. I held back my tears because I didn't want to ruin our evening vegetation ritual that we both desperately need through the week. I watch little old

A lot of my days consist of resting wrapped in my favorite blanket and afternoon tea because night time is hit or miss. I didn't sleep much last night. I ended up falling asleep on top of all the bed covers with my heated blanket because I couldn't move to get under them. At 1:30 this morning, I wandered into the kitchen for more meds and water and debated just staying awake until I got tired again. I didn't. I went back to my heated blanked that was now turned off and rearranged my pillows and stared at all the odd shapes that things make in the dark. I think around 3am I found sleep again. I wanted to wake up and go to the bookstore. I was still pretty sleepy as I made brunch at 11am. I drank coffee in a daze and I can probably only recount parts of my day. I allowed myself to fall asleep in the recliner in the late afternoon. The sound of cartoons didn't bother me as my zombie kids wrapped themselves in blankets and relaxed on their second to last day of win

I never thought I'd be so nervous about discussing pain management with my primary doctor. I need some kind of pain management to help me between now and surgery. This is also at my specialist's request. But, I'm nervous and I'm here feeling like and addict, although I'm far far from it. This is what the opioid crisis has done to people like me. I know, I talk to other women with endometriosis who are in the same boat. I'm not the only one that refuses to go to the emergency room when my pain gets out of control. Dealing with unbearable pain is the lesser of two evils. I'd rather scream or cry than ask for help and be sent to a social worker again. I'd rather tough it out than be labeled a drug seeker. Because once that ink dries, it's there. It doesn't go away. I have plenty of medical evidence that shows I'm not a drug seeker, but that doesn't seem to matter. I am just person who needs some kind of pain medication to help me feel some

Making the trek back from Phoenix now. I had a follow up appointment with my pelvic pain specialist, Dr. Desai. She's amazing. She puts things straight forward with no sugar coating. She gives us all the information we need to make decisions in my healthcare. She is patient and never rushes us knowing we drive two hours to see her. With that, I (we) have decided that surgery is the next best step to take. The alternative was giving 3 months of physical therapy a shot to see if that brings any relief, but I didn't feel that was the best route to go. At least with surgery, if she finds endo lesions, she can excise them and I can start fresh. If endo isn't found, she will take a look around and cut any adhesions that could be the culprit of pain. Either way the surgery goes, we will have a clear path to follow to get my back to where I want to be. Following surgery I will likely go to physical therapy again as part of recovery. The goal is to put even more time between surge

I've been debating on talking about how I'm feeling. I always freely talk about my dealing with endometriosis and my insights and a little about how I'm feeling, but I think it just touches the surface. It may also be the fact that it's been well over a year since I've felt this bad. The last truly bad time I've had was before my last surgery in August 2017. I made it through the summer and working the busy season at work, but before surgery, it was tough. It could also be that since the last bad time I've had, I seem to have gotten progressively worse. I'm also falling into a mild depression again. It has been over 2 years since I've had problems with depression and anxiety and have needed medication. I don't think I'm to that point yet and I'm trying my damnedest not to get to that point.  My pain is getting worse. For months I've had joint pain and endo pain, but usually at different times. My endo pain has also been under

I've been awake for over an hour, watching the sun come up. I caught a cold from my son and have been coughing and coughing since it was still dark out. And the coughing has brought a lot of pain today. Yesterday too, but not this bad. I feel like I should be used to it. It happens most mornings. My feet ache and I have to grip the edge of the bed and the door and the wall to make it across the hall to the bathroom. And then after a while, it dulls and I can ignore it. This morning my back aches, likely from the cough, and the pain in my legs has me slowly breathing in and out so I won't cry out loud. Being sick triggers a pain flare. I remember back in January I had the flu. Once I was over it, my body just gave up. I was in physical therapy and I rememver my husband having to take me and help me walk in. I didn't want to miss a session and it was important to me for my therapist to see what a bad flare looked like. After all that, I ended up taking a few weeks of work t

Welp, after such a fantastic day yesterday, I started off my Thursday completely achy and with a terrible case of the dropsies. I sacrificed an egg attempting to make breakfast. The recliner was so very accommodating after that. Currently I'm in a hellfire bath in an attempt to make my legs work. I'm hoping the meds I took help out a bit too. I'm looking forward to the monthly PTO meeting later, so it'd be really nice if my body could cooperate. I actually started using a different pain logging app called Pain Scale. I have abandoned Phendo for a bit since then pain I've been experiencing is only partly endometriosis pain. I don't think the endo is causing my joints to hurt like this, even though there is a possibility I could have endo lesions on my nerves. I actually can't wait to see my doctor next week and then to see my specialist the following week. My neuro follow up was also bumped up, which I'm happy for. Maybe we can make some sense of every

I've been feeling great the last two days and all I can think of is how the pendulum of my health swings to such extremes. Lately I try to keep track of everything to see what sets me off and what doesn't and there really is no rhyme or reason to any of it. This past Saturday morning, I could barely walk and it took an awful lot of medication to get me through the day. It was a great day in the end, but one still filled with lots of pain. And then today, I got up at my regular time, started laundry and picking up the house and then went outside to start to paint the porch. It was such a huge difference from how I felt just days before. On good days like today, I can't even fathom how I could have been in so much pain. I try not to waste a second of a good day. I don't know if I mentally put all the bad days in the back of my mind or if I hyper focus on feeling so good. It boggles me. Completely. I also never know how I am going to feel the next day. Today's da

I'm currently still on a search for as much information as I can find about the pending investigation into the drug Lupron. Lupron is a drug commonly used to treat prostate cancer in men, and more recently, to treat endometriosis symptoms in women (and men in some cases as well). It works by overstimulating the production of hormones, namely testosterone and estrogen, causing them to stop being produced temporarily. I fought with insurance companies in 2015 to take Lupron after having a surgery that provided no relief from my pelvic pain. It was the second to last resort treatment that my OBGYN at the time suggested. We didn't want to skip to the last resort, which was having my last remaining ovary removed, because being only 34, it was not the best idea to undergo surgical menopause. I was excited to try my 6 months of Lupron to see if it provided at least a few years of relief. It was highly recommended, with the only side effects being worsening symptoms shortly after t

OH MY GAWD! I have so much to say right now. Like, my brain finally processed all that noise and now I can package it up and sell it like American cheese. Calm down. Not sure where I was going with that cheese part, except I haven't had much to eat today unless you count the popcorn samples and can of Chef Boy-are-you-kidding-me-this-isn't-pasta I ate. Oh, and a pretzel at work because I love stress eating and intended to, but life happened and I still have a pastry from my all time favorite spot chilling in a bag on the table... It's all because this morning I dropped the thing I love just a little more than my kids as a result of my back spasm. My beloved make-up and brushes cascaded down around me like Sephora was literally making it rain. Sit down, I actually do love my kids more, even when my favorite black sparkly Kat VonD lippie is painted on the side of the bathroom cabinet. I held my breath inhumanely long when I saw that disasterpiece. So yeah, my back spams s

This is the first morning in a long time I've woke up in a whole lotta pain. It actually started last night during family movie night. My left shoulder hurts every time I move my arm. My hips, lower back and legs keep getting shooting pains and have just stayed sore. I hate taking medication, but I'm loaded up and ready to feel better. I have a busy day ahead and I don't want to feel like this. Well, I can say that the best thing to take my mind off my pain is getting involved in something bigger than me. I attended a PTO meeting this evening and came home feeling so different from how I woke up. I am totally looking forward to our Trunk-or-Treat event next Friday. It's our first event and we're hoping to raise some money to get more projects up and running. Fingers crossed all the pieces fall into place.

Last year's vacation was just three weeks after my first excision surgery for endometriosis. I had had plenty of ablation surgeries along with a hysterectomy previously. I wasn't afraid of going on an 8 hour car trip so soon. It was something I looked forward to. This year feels different. In the last month, my endo symptoms have been looking over my shoulder day in and day out. I was actually scared of the car trip and the walking. It's not normal to have stabbing pains when my bladder is full, but that happened yesterday. I can remember a trip to San Diego a few years ago that I packed double for not knowing if I'd be swollen like I was in my second trimester. It really didn't bother me then. Now I find myself only buying stretchy pants and leggings. Thankfully stretch jeans are all the fashion. Comfort is key, right?  I really shouldn't care, but the swelling has become a symbol of pain and discomfort again. It can sometimes be a symbol of healin

I just learned that when you upgrade your phone and reinstall the blogger app, it pretty much wipes any drafts you had saved on your previous device. Yes, September Twentieth has been eaten by technology. Let's get on with this... I've been dwelling a lot on the two sides to having a chronic illness. I've been wanting to go back to the summer months when I felt a helluva lot better than I have felt recently. I feel like I'm in limbo right now. I have such an interesting mix of good and bad days and they are equaling out a lot lately. I find myself saving my "spoons" a lot these days to sort of build up a wall around my good days and keep them good. You will likely see more of my good days than bad because bad days keep me holed up and hiding in a way. Believe me, it's better that way. Which brings me to the next part of my journey. Currently my return to work is pending. I have been restricted to work no more than 4-5 hours a day, 20-25 hours a wee