9/6/2014

* I was reluctant to write a new post until I got FIVE good comments on my previous post HERE... but I had a thought as I was up all night and felt like sharing because I don't know if I cover my everyday life very well.  So while I would still very much like to get some comments (random, creative, far-fetched, whatever!) on my previous post (PLEEAASSSE) here's an expanded post of what I jotted in my pain/endometriosis journal last night:

Sometimes I feel like I spend all day just trying to minimize the pain that may surface at night.  That's an annoying way to spend the day!  I talked with my doctor about it and she confirmed that most people who suffer pain do feel worse at night.  She also talked some about normal cortisol levels and how they are different for pain patients, which made total sense while I was there talking to her, but now I can't remember exactly what the difference is.  (I'll have to Google to refresh myself).  At least I learned that there is a physiological reason for pain being worse at night and the irritating part is that pain at night throws off an entire day, if not more.  I either sleep in too late and then I'm not tired the next night, or I try to wake myself up at a regular time and then I'm just the Walking Tired for the rest of the day.  Also, for me at least, the less sleep I have, the more pain I feel.  It's almost always that inverse relationship.  So it's likely that while I'm up and unable to sleep, because pain that I can deal with during the day can definitely stop me from getting comfortable enough to fall asleep, I also have these thoughts and knowledge in the back of my head and that can't help my subconscious with the sleeping part either.  I do experience nighttime flare-ups of pain.  I can deal if it's a night when I went to the gym and expect it but on random days when I have done nothing of consequence I do get an occasional bout of extreme pain and that is extremely frustrating.  That happened to me this past week and it sucked but I felt improvement the next day and better the day after that, so that's a pretty quick turnaround.  It used to be a flare in my pain level would last a week, so if we are grading on a curve, my grade is improving.

6/1/14

Quick and late update:  Nothing exciting today.  I felt generally okay.  Just overly tired again so I am going to focus on my sleeping habits this week.  I tried to stay up a bit last night because I wasn't sure if my mom's fever would get any higher and then I would have had to take her to the ER because apparently fever + chemo patient = Bad.  I didn't hear from her so I finally fell asleep but one night can change everything for me in terms of how I'm feeling.  I have to be careful to not get too run down.  I was going to go to the gym today but I was exhausted.  Also, I think I was feeling allergies for the first time this year.  My eyes are dry and I'm a little congested even though I took Claritin.  So for this week... think sleepy thoughts for me.  I'd like to have five nights in a row of normal sleeping patterns because I know how much better I feel always when I can do that.

5/30/14

Okay, I made it through the night.  And by night, I really mean early morning.  I decided I was just going to give up today and let my body sleep as much as possible, even if it wasn't my normal sleep schedule.  I had pretty bad pain last night, but I slept for almost 12 hours and when I woke up, my body felt like it had rebooted.  My pain level is way down.  My lower back is grumbling a little bit but still, much improved from yesterday.

I know sometimes when I've been not sleeping enough that it can truly mess with my body.  Endometriosis takes a toll on a body and it's important to get enough rest to let your body take care of itself.  I had been feeling like I was going to have to just have a day to sleep but I had been putting it off because I hate those days.  I feel like it is wasted and can throw me off my schedule, but in terms of my body, I have to remember it's okay to do.  

The Pain Equation (or The Mathematics of a Chronic Illness)

I have endometriosis.  Endometriosis is a chronic illness.  A chronic illness adds and subtracts different things to life.  In order to deal with this chronic illness, I realize I have come to look at much of my life as a mathematical equation.  I take a situation (a), subtract the toll it will take on my body (b), and if the answer is a positive number (c), I will attend or interact with that situation.  If the answer is a negative number (d), I'm staying home.  So, (a-b)>0 = c and (a-b)<0 = d.  I just boiled my disease down to some math!  Pay attention, all you students who are preparing for the SATs!

Feeling Better, BUT...

My last post was telling you that I've made steps in a positive direction (yay!) which is HUGE over the past few months.  That post was all good news.  I don't have bad news to go with it, but I'm afraid too many people are going to read and think that everything is fine now.  In case I haven't said it already a thousand times, endometriosis is not curable.  I am going to have it.  Tomorrow, next year, at least until menopause... I'm going to have it.  With that comes decisions about hormones... which I am also going to be on until menopause to keep the endometriosis at bay.  And those hormones are not really supposed to be long term solutions.  They come with a long list of side effects!  Plus the supplements to help my body fight off the endometriosis that I guess my body wants to produce.

Doctor's Visit (Feb 2014)

Ok, so I went to see my doctor, Dr. K, on Tuesday.  I know I said I was going so I should post a summary.  Basically, it went exactly how I thought it would go.  I am going back for my follow-up appointment in 4 weeks, rather than my regular 3 months, due to the stressors that have loomed large over the past month or so.  At that point, I will hopefully be feeling better, but if not, she said she would likely recommend trying Lupron.  Lupron is a drug that essentially fools your body into thinking it has hit menopause.  I've avoided it and not wanted to take it due to the many horrible side effects (hot flashes, irritability, mood swings, mental breakdowns, any and all menopausal related side effects) I've read about, but Dr. K said she would feel pretty good about it now because it is always accompanied by hormone replacement therapies.  Also, since I have been getting a hormone injection already which lowers my estrogen levels, the change would not be as drastic as it would be normally.  Honestly, I still am not all that excited about the prospect and I would prefer feeling better in a month, but if she recommends it, I will probably do it.  I haven't regretted any course of treatment she has suggested/implemented so far so she's earned my trust.  Plus, pain sucks, so if I feel bad in another 4 weeks, I will probably be interested in anything.  Lupron is a federally regulated drug that I have to apply for through my doctor's office (or they apply for me) and I would need approval to start it.  I did not know that part until yesterday.  For now I just got my regular hormone/birth control injection.  That does sometimes help with pain management when it kicks in, probably at the end of the week.

A Night In the Life of Pain

Ahh... bedtime.  It seems to come around oh so often.  I think I would enjoy longer days and less sleeping...  But we all know that we have to sleep.  Well sleep is something that has been consistently hard since I began having endometriosis symptoms.  

At the beginning, I don't know if I would have been sleeping or not, but the pain was so bad, I basically didn't sleep normally for months.  The thing with sleep is that we try to relax and turn off our brains and let the sheep counting take us away...  Well when you have acute pain, chronic pain, post surgery pain... it is not easy to relax.  I could make it throughout the day simply by keeping myself distracted by doing about 3 mindless things at once.  But if I stopped doing those things, it didn't matter how tired I was, all I could think about was the pain.  I was uncomfortable every second before I found a doctor who could manage pain while also dealing with the endometriosis.  I have never slept with the tv on, radio on, or even been able to fall asleep to music, but I started leaving Netflix playing on my computer while I was in bed trying to sleep and I am only now getting myself able to sleep without the computer playing some television show.