February 17... It Begins!

Today was my doctor's appointment, after which I said I would update people on my status... so here we go.  I start my Lupron injections on February 17!  I don't know a whole lot after that, but after the past year, the side effects don't seem very bad to me and for what would help my body, the effects may actually end up being positive.  

(no idea if that is what my actual label will look like)

For 2-3 weeks after the initial shot there may be a flare-up of pain.  My doctor explained exactly why to me in scientific terms and it made total sense, but I can't remember exactly what she said.  It had something to do with stimulating a certain hormone when it starts and then eventually it actually prevents that hormone from firing (?).  I always like when she explains things and yet for some of the more advanced biology answers I do not always remember everything.  For what concerns me, there could be an initial flare-up in pain.

Also, Lupron is not a quick fix, although we both are hopeful that it will be a fix.  For one, I learned that the hormones in my system from the Depo shots that I have been getting can last up to a year in the body, especially since I have been getting the shots more often than the "standard" dosage.  The good news is that since I have been getting them regularly, my estrogen levels are lower than a normal person so the shift to even lower levels will not be as drastic.  (I believe she said also that right now I have high progesterone levels, but those will decrease with the Lupron).  

(Estrogen and Progesterone levels in a normal, ovulating female - Not me, but just for reference)

Three weeks after I get my first injection, I see the doctor again and she will decide if I need any hormone replacement therapy to supplement the Lupron and get a grasp of my symptoms/side effects, etc.  The actual Lupron injections are every three (3) months.  The side-effects are most closely related to Menopause, but some people have a problem sleeping at all, which I had not known.  Hot flashes are common, and other than that, we will just see what happens.  I will not be adjusting other medications for a while after the Lupron starts and while the initial flare-up pain won't last, overall pain may not decrease for three months.  Even at that time, if I'm feeling better, I will likely still continue to feel better for while and then eventually things will even out and we can assess how I am.  

(Basically, this could be me... without the pained expression... There are totally worse things!)

I still feel really good about doing this.  It's a little frustrating that because my body is being flooded with hormones and they don't just change overnight (think of pregnancy hormones and how they decrease gradually after giving birth), it will take some time to see how I will finally feel.  Now that I've said that though, I'm not going to worry or think about it because that's the thing I cannot change.  I'm making a big change and I feel calm and even a little excited to try this and hopeful that it will work.  And while it won't be overnight, I'll still feel better slowly, which sounds great AND I will not be dealing with all the side effects of the Depo shot anymore! (Hallelujah!!)  That part I am super excited about!  Also, I should be able to exercise more regularly and be able to do more and more activities as the time passes... which is my ultimate goal: to be able to do everything I used to be able to do.  I don't know if that's going to be the final outcome, but until proven otherwise, it continues to be my goal.

And that, Ladies and Gentlemen, is all I know right now!  I look ahead at 2015 with much more excitement than past years and I'm still hopeful that this will be a really good thing for me!

Doctor's Visit - December 2014 (or Endometriosis: Episode 4, A New Hope)

(Love this sentiment, but have been wondering if this is true lately)

I will end up talking about this with many people in my life, but this also feels totally appropriate for my blog.  I had a visit with my Ob/Gyn doctor (Dr. K) yesterday and made a decision that could lead to some difficult but ultimately positive changes.  Most importantly, I decided I'm ready to try Lupron, the drug that I had resisted trying for so long because of the side effects.  I've written about it before on this blog (so you could search for those posts) but in simple terms: it causes your body to go into menopause.

Kidney Infection

Yes, I was feeling almost better.  Almost Ok, and then one debacle after another.  The end of the story: I had a kidney infection.  I just finished the last of my course of antibiotics (and I took my probiotics too, those are important!) and I go to my own doctor next week so I will get tested to make sure the infection is gone.  Plus, since I had a kidney stone, and endometriosis around the area of my left kidney, I will also ask her what I can do to encourage kidney health.  So far, I've just been continuing to drink some cranberry juice (well cranberry juice and other juices mixed because straight cranberry juice is not something I enjoy at all, but for the purists out there, I did manage to finish a bottle of the organic straight cranberry juice and it was certainly... Tangy).  

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.

Where I've Been

I know some people are wondering why I haven't been writing more since my mother has been feeling better and things are starting to calm down.  It is simple.  In order to get me feeling better (I was feeling BAD by June/July), my doctor added a prescription that I had taken prior to my surgery.  It has helped my body "calm down" but I have always hated taken it because I feel constantly drowsy and I also feel like it slows down my cognition when taken during the day time.  It has only been very recently that I haven't felt like I need to continue taking it during the day.  Hopefully I can now begin to wean off of this medication and slowly get my energy back.  BUT... (and this is a big but!) I am feeling pretty grateful to be able to worry about my energy level again finally and not feeling the amount of pain I had been constantly feeling.  Honestly, I just have been feeling bad since January and trying to "get by" rather than improve and live and smile.  At one point I realized it had been a long time since I last smiled and that's pretty depressing.  It is a little thing, but I am SO looking forward to going to the gym with much more consistency this month (my one goal for the next month) because I feel great when that is something I can do!  There have been a lot of negative things going on and now the absence of negative things feels pretty positive!  I will take what I can get.  

My Hierarchy of Pain Needs

I mentioned yesterday that I had finally broken down and bought some supportive bras for non-gym use.  (I already have heavy duty sports bras that are great for the gym).  I was nervous that I would have to not only increase my cup size, but my band size as well and that would hurt my self-image.  Well, I have been a 36 for as long as I can remember and I am now comfortably a 36/38 while still being a DDD cup.  While I could do without the extra letters on that cup size, I feel good fitting into my own size clothes again.  (Although I cannot wear my medium t-shirts because there is no way they are fitting over my chest).  I felt good enough to actually buy a couple shirts (on sale!) that help me feel like my old self.  I would like to be a little more toned still, but it was really a good feeling to be in normal clothes even while I'm still getting my hormone shot because that is supposed to cause major weight gain.  

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.  

Not A Fun Night

Ugh.  It's about 4:30 AM and I am having pain that just will not quit tonight.  It is frustrating and I know by this point tomorrow will be a pointless day that will just be me being exhausted.  I've had insomnia in the recent past, mostly when I get nervous about Mom's chemo or something to that effect, but tonight it's old school: straight up pain.  I am uncomfortable, feeling that wonderful endometriosis pelvic pain and remembering when this was my life 24/7.  I thought I'd be okay with the valium suppositories, but I guess I'm going to need more than one night to get back on track.  I feel like I've taken enough meds to stop the pain, but I also think I spread them out too much, not realizing how bad it was going to be.  I should have just doubled the dose when I went to bed 6 hours ago.  Sometimes it feels like medication that knocks me out in the middle of the day becomes ineffectual at night and I have never understood that.  Wish me luck with sleep, and be not at all surprised if I'm out of touch tomorrow (or today really).  I know that all the other EndoSisters out there know what it's like to get these days and they just suck.  Plain and simple, tonight sucks.  Pain sucks.  Pain not allowing me to go to sleep sucks.  And at this point my stupid medications not giving me the relief I need also suck.  I hope everyone I know is having a way better night and not reading this because you're curled up asleep in bed.  (Did I mention this sucks?)  I am so much less into positive thinking when I am exhausted.  But these nights happen sometimes.  Ignoring them is ignoring a big part of endometriosis so I'm sharing it with you... the not great, the bad, and the painful.  At this point most of you are closer to waking up than to having fallen asleep so I hope you have wonderful Fridays and I hope I sleep through your work!

5/29/14

Not having a great day, so I'm disinclined to write anything, but I realize the bad days are important to document.  I am having worse pelvic pain today but again, I didn't use a valium suppository last night.  I see the correlation, it happened last time I tried to go without for a night during a stressful period.  This time it was not by choice though.  I ordered my prescription but didn't even think for a second about Memorial Day weekend, so that was two days that mail wasn't moving.  So I don't have the valium suppositories but they should arrive any day now.  It takes about a week and I ordered them last week so hopefully they will be here in the next day or so.  It's a bit disheartening, which I think I said last time, that I feel so much worse by not taking one medication.  The pain is so drastically different when I don't use the valium.  And I don't mind that at all, but I would be more comfortable if it took more than just one night to feel so different.  I woke up ready to jump in the shower and then the pain hit and I took my regular pain meds but an hour later I'm not feeling much of a difference so I may need to take more and hope I don't get overly drowsy.  Then maybe I can at least shower.  For right now, I'm just watching tv I don't care about and looking at a bunch of different things online to distract myself.  I don't like bad days but they do remind me of how far I have come that now they are pretty infrequent.  I have discomfort still usually but not like this so I'm trying to just not think about it too much; just do what I have to do to make it through to when the valium is delivered and I'm back on schedule.

Dear Pain

Dear Pain,

I feel like I've been pretty tolerant of you throughout the past couple years.  I don't yell and scream, or curse your name or ask why you chose me to be your buddy/punching bag.  I mean, I've really been downright cordial.  I don't think it's asking too much for you to treat me in the same manner as I treat you.  I mean, make up your mind!  I don't think that is asking too much.  Which pain would you like to torture me with?  Pick one and stick with it!  

Doctor's Visit (May 2014)

I went in for my doctor's appointment today.  Didn't learn anything earth-shattering or life-altering.  Dr. K said that if I am not feeling worse, with everything that is going on, then I am doing well.  She knows I feel discomfort and some bloating.  She reminded me I need to see about an ultrasound or aspiration/biopsy for a node in my right breast.  That showed up on a CT and I'm glad she reminded me because that whole thing must have somehow disappeared from my mind.  I normally follow-up with what I need to but I hadn't even thought about this.  (I could just make an appointment for the same time as my mom and we could hang at the hospital together!)  No change in meds for now, although I am going to go back to the first pharmacy for a month for my Valium suppositories to see if the difference has just been in what I'm doing or in the way the valium was made.  Suppositories are not pills that come out of a bottle, so each pharmacy mixes them up by request, (or basically by prescription) so there may be more of a variance than in just basic pills.  Each order goes to a compounding pharmacy, so I'm going to try the one I did better on for a month now in order to determine if the difference is just me/stress/overdoing it or if it is in the pill.  I will continue to try to do as much as I can without overdoing it.  My back has been killing me since I got home.  

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!

Happy Mothers Day!!

Happy Mothers Day to all the mothers out there!  Whether you are a mother with endometriosis or a mother to someone with endometriosis, you deserve to be celebrated!  And if you are a mother with no relation to endometriosis at all, well Happy Mothers Day to you too, because we all have our tough times and mothers help us through them.

The Real Me

There is something I've been wanting to address for a while now but I guess it was never the right time.  For me, the time is now.  The images and words between/above/below the text feel very personal to me in this post.  I have realized that there is a glaring and important difference in people's perception of me as opposed to my actual experience while I was being diagnosed and up until my surgery and for a few months after.  The perception is I "dropped off the face of the earth," that I "wouldn't respond in a timely manner," that I didn't call back quickly or that I wasn't responding the way that others may have felt I should have responded.  I have a huge problem with all of those statements and I have a problem that nobody noticed...

Pain Care Bill of Rights

 The Pain Care Bill of Rights

I found this while I was wandering the hospital on Tuesday, and I thought it reinforced some really great information and it comes from a major hospital, so it made me hopeful that people with chronic pain are getting the care they deserve.  Since pain is one of the biggest symptoms of endometriosis, I found this particularly important to share in this forum.  I did not write it, but it is distributed publicly and I found it supportive...  So click "read more" to see it :)  (Or, if this is emailed to you, just keep reading!)

Invisible Illness

I have recently begun to think a lot about a term I've heard: Invisible Illness.  These are chronic illnesses (Endometriosis, Lupus, MS, many others) that are not apparent upon first glance, or upon just looking at a person.  Wikipedia has an entry for "invisible disability" which you can look at but wasn't worded well enough for my liking.  I acknowledge that there are many of these illnesses world-wide and I support people becoming more familiar with them and raising awareness about them, but this is my blog so I'm going to keep this post confined to endometriosis.

Fear

ALGOPHOBIA: Fear Of Pain.  Fear is something that I've touched on in other blog entries but have never fully-fleshed out in terms of my meaning.  With endometriosis (or, I would assume, with most chronic illnesses), fear is a very real thing.  

I have dealt with a lot of different fears since even before learning I had endometriosis.  I had the fear of pain from the beginning.  Not paper cut pain but pain that was so pervasive, it makes it so you can't even think right.  Pain that consumes and haunts your entire life.  I had PAIN at the very beginning, before getting proper medications and before having surgery.  The memory of that type of pain is scary.  I do not want to go back there.  I know I have had very few days of pain like that since I have had proper medications, a knowledgeable doctor, and surgery, but I now notice every twinge and in the back of my mind I am hoping that twinge is not signaling the start of pain.

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.