Chronic Ama

 I guess I was meant to open Blogger today and see the blog my daughter left for me last April, at the beginning of the pandemic. I must have had a flare up at the time. It was probably stress about the world being on fire.  That actually is a great opener for why I'm back. It's been on my mind so much lately to keep blogging about being a chronically ill mother. Mom is a tough job in itself, but there are so many more variations when it comes the Chronically Ill Mom job. I'll just take things day by day here and see where we end up at.  I've been feeling down today because I got a migraine yesterday morning that started with pain in my neck. I think my nerves have regenerated rather quickly following the ablation I had done in April. My migraines had started 2021 with an intensity only matched by my uncontrolled fibromyalgia flares. I had cervical medial lateral nerve ablations done starting at C3 and then going up and down to burn off all the nerves that were the culp

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

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

In the spawn of a second, nothing really changed but a digit on my smart phone screen. Why do we celebrate a new year anyway? Because each calendar year must be ended and commemorated with the illusions of resolutions for a new set of numbers to live by. That's a lot to take in. Because life is, simply, cyclical. What begins, must come to an end. What ends fosters new beginning. I don't do resolutions. I never have. Besides, there are so many ways to resolve to be better and no one way is truly the right way. And why would anyone resolve to do the same things over again because you didn't accomplish them previously? That, my friends, is a sure route to depression and self loathing that not one of us deserves. Seriously, don't resolve to do anything for the second year unless you have a damned good excuse for not getting it done the first time around. That's probably how aging works. You can never spend to much time wishing because you end up with a bag of regret.

I slept terribly last night. I woke up in the middle of a dream with intense pain in my feet and legs. It took a while for a muscle relaxer to kick in, but I fell back asleep for the most part. I gave in and took a vicodin this morning to stay on top of the pain. It helped. I was able to run the last errand I needed to run. I even wrapped a few more presents. I guess now its feeling like crunch time. I can't put things off like I have been. It's my hope to be able to get in the kitchen tomorrow. I want to make some peanut clusters and I'm still itching to make lemon curd. I was also going to attempt a small batch of scones if I have the energy. We also still have sugar cookies to frost at mom's house.  I think I'm just blogging my to-do list now! So boring, I know. For me, it's a help to get all this mundane crap out of my brain. Also, I'm sitting at Chuck E. Cheese, so this was my little bit of quiet time today.

In the last 24 hours I have had some great conversations with two friends. Both have offered me the perspective I needed and both have let me speak my part, thus, further enabling me to let my ideas come to fruition and push myself to toward positive change. As a result, I had a wonderful day! I did housework, which is always so damn redundant, but is quite a necessity. I accomplished everything I set out to do today, which paved the way for the goals of the week. Remember, I did want to complete one gifty type craft as we are in Santa countdown mode. My paints are organized, my craft desk (yes, I have a desk dedicated to crafts) is cleaned and clutter free, and my task desk is also has order to it. I'm ready to make this week my bitch. But wait! There's more! I also had a relatively low pain day. I think when all is right in my world and I can focus on things one at a time and have my eye on a goal, I tend to focus less on what hurts. Yes, I am still in pain (and I will be

I am horrible at finishing blogs lately. I admit that, yet again, I haven't been feeling my best. And when I do feel good, I guilt myself into catching up on every single thing as fast as I can. And then sometimes that starts a vicious cycle. Today I'm trying my best to break that cycle. I'm nursing a migraine. I had a breakthrough for about 2 hours with no pain, so I finished laundry, cleaned up the kitchen, vacuumed, took out the trash, cleaned the cat box, watered my plants and then took a recliner break because my pain came back in an instant. I have to drive up to Phoenix to see my pelvic pain specialist tomorrow, so I decided that it was time to hit the breaks. I made myself get in a hot bath. I made myself take all my meds. I am making myself take care of myself, as odd as that sounds to me. This week if laundry goes undone, but I complete a craft, I'll be happy. I won't submit to guilt. I'll have more good days in return, and that's the motivation

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

It's 2:15 in the afternoon.  I only worked 4 hours today, but my body feels like I worked 10.  I finally got my B12 shot. For the 1st time it made my arm hurt pretty bad. I don't know how to say this but I've been slowly feeling depressed again.  I start my leave from work on Tuesday And that's not really a bad thing. 18 years of working with a company... It's gonna be a little sad to start my leave because I know I'm probably not coming back. If anything I'm not looking forward to missing the people that I have grown to love over the years. I know this is the right decision for me, though. I think for the 1st time in a long time I'm not looking forward to my birthday. I have no plans for the 2nd year in a row and I don't even know if I want to celebrate. That makes me sad because I love celebrating anything and everything. I don't care about getting older. It just feels like my life is changing so dramatically. It's also hard to celebrate

Today was shit from the start, no matter how hard I tried. My doctor appointment was rushed, so I didn't get my B12 shot, nor did I get to ask many questions. Silver lining... I got leave of absence paperwork completed and got my handicap placard paperwork sent in. Yeah, I dislike driving lately and have a hard time walking around when I'm running errands. Not sure if it'll help, but I'll take closer parking. Leave of absence company called me after receiving paperwork so quickly and my case manager was an ass. Condescending wanker. Basically told me they needed to call my doctor for medical evidence that I needed to be on leave. And now I have to see if my specialist is going to recommend surgery, which will ultimately push my leave through. It's safe to say that id put money on going under the knife soon. Midday goes fine. I'm over the morning. Then, I pick my kids up and the fun begins. I'm heading toward an intersection to turn right, going to another

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've decided this morning that all I want to do is immerse myself in music and art and books. Basically, all the things that make me happy and make me forget how afraid I am.

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

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

Currently waiting at a new OBGYNs office for a HRT consultation. Maybe I won't get told that it's impossible for me to have endometriosis or that there's nothing he can do for me. I'm nervous. I don't usually get nervous with doctors, but today I am. Update: OMG, I love my new OBGYN! He agreed that I very likely have endometriosis lesions and definitely at least have adhesions again. He agreed to start me on progesterone to see if it helps curb the symptoms I'm having.  I haven't really paid too much attention lately just because of everything in my life, but nausea has been quite a big symptom for me. I was actually surprised to see that I've lost some weight in the last few weeks, despite not being on my low carb, healthy eating path. I am not a breakfast person, but a lot of days even lunch is hard to get down. Hell, today I got an order of cheese curds and I wasn't the least bit upset about sharing them with my hungry offspring. I ev

I haven't posted about September being Polycystic Ovarian Syndrome awareness month. This is actually where my health journey started. I was diagnosed with PCOS in spring of 2006. I was immediately put on Metformin to regulate my insulin and try to get my hormones to work normally. It worked, and I was having more and more normal periods, for the first time ever in my life. Then, we decided we should try for a baby. In November 2006, I was told it was not going to be possible to conceive and they started me on more meds to see if it was possible for me to ovulate normally. I was pregnant 4 weeks later. I was one of the lucky ones.  Fast forward to the present. I no longer have ovaries, thus I really don't have PCOS anymore. But, I still have a lot of the hormonal symptoms, which also cross over to the hormonal issues I have with endometriosis. I get cystic acne, which I have started seeing a dermatologist for. I find it more and more difficult to lose weight, alt

More appointments today. I can't catch a break. My days are busy and I don't want them to be. I am anxiously awaiting vacation in October. Hopefully next week will slow down so I can start making packing lists and all that fun stuff. Today I did my sets is squats. I am going to try some heat when I get home and sit down to pay bills. Maybe I'll be able to hit the treadmill this afternoon and finish with some stretching. I haven't stuck to my plan.  So the treadmill didn't happen and I got hit with fatigue really bad again. Looking at the calendar, it's that time of the month for migraines and all the shit that comes with my phantom cycle. I guess now is where I cross my fingers and hope the preventative meds work their magic so I am not left with a migraine that lasts for days on end. My week is too busy for that.  Tuesday Update: I took my Maxalt (med to abort a migraine) at bed time last time and I pretty much passed out within minutes, like