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).  

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!  

Personal Choice

Personal Choice.  It means a lot of different things.  In this country, our personal freedoms are taken very seriously.  In this blog, I am talking about having control over decisions about my health, as well as the health insurance company that goes by that name.  I think I could honestly rant about my insurance company and many like it on a daily basis but I'm choosing today.  Yesterday I basically spent 6 hours exchanging emails with my doctor's office, calling my pharmacy, and trying to figure out why it was taking so long to refill prescriptions.  I have come to the conclusion that for anyone with a serious illness, Personal Choice is the only insurance to have.

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.

Feeling Better/ 1,000 Views!

As I've said before, this blog is very personal to me.  While I might not be sharing every innermost thought, I am still writing about a topic that has caused me a lot of pain and frustration... physically and emotionally.  So today I wanted to thank you for reading this blog.  I just noticed that I had over 1,000 views and I think that's awesome!  It was a great feeling just to see that!  So today's post is going to focus on the GOOD.

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.

A Day In the Life of Pain

So as I've said many times before, pain sucks.  A lot.  I've been asked what I do all day or "don't you get bored?" or other questions.  I used to feel insulted by those questions... like the person asking me was saying my life was pointless or that I should be doing more during the day.

I could tell you what I'd LIKE to do during the day but for days when I'm feeling moderate/severe pain, it takes mental effort just to get through the day.  Those days are not fun and I'd say sometimes I think they are pretty pointless.   I would like to do SOOO many other things... I think I could make a list of about 500.  When I have a bad day, my pain is bad enough that I can't even pinpoint where it's stemming from (which was one problem I had when everything started).  I get through my days by NOT thinking about all the other things I could be doing.  I consciously do not think about how much life sucks or "why me?" or whatever.  None of those things help me. 

Showers

Showers.  (I know, I fooled you into thinking I was talking about snow showers after the week we've had... but I'm not).  I'm talking clean, watery, soapy-goodness showers.  I have realized that there is a direct correlation between how I'm feeling and how often I'm showering.  The better I feel, the more I shower like my old/normal self.  The worse I feel, the less I shower and as the days go by, the more I feel like a sick, dirty version of myself.  Today is Wednesday.  I haven't showered since the weekend.

Stress

So I have a list of topics I have yet to post about and I haven't been feeling well enough to write about any of them today.  It's very frustrating.  I'm feeling more pain for the past few days than I have since probably before surgery.  I haven't done anything exerting and yet there it is.  I guess I could direct you to the posts on tiredness or setbacks but I'm typing my post today because usually I would not chronicle today at all.  I was in pain so I had no desire to think about anything interesting I could write about earlier and now I am ok because I took extra pain meds but not thinking as clearly as I would like.  So normally I would just skip today, but days like these are important in understanding what my life is like still even though I would love to hide them away and deny I still have them.  Instead, I will give you a brief insight into my stream of consciousness during times like these.  

I hate to let myself admit it but today's pain makes me nervous.  It feels like pre-surgery pain...  I am hoping that I can attribute it to the overly stressful two months I've had because otherwise something might be wrong and I just do not want that at all.  I'm supposed to be gaining strength and overall health and having LESS pain, but that is not happening right now.  I was annoyed to be feeling bad while my sister was visiting because I couldn't even really sit and chat.  Small talk is the first thing to go when I feel pain.  (For my purposes, I would say that I'd been feeling "discomfort" mostly.  It's annoying and can interfere with me get my real life back, but it is way better than what I would call "pain."  For the past maybe three days I'd call it pain.) 

My Story (Part 2) - The Frustrating Part

(not me, my dr, or anyone I know)

I ended the first part of my overall story with the scheduling with what was to be an exploratory laparoscopy.  Here is a link to the first part: My Story (Part 1)

This is the part of my overall story that I would change if I could.  I would change just about every part of it, but at the time I didn't know better, I felt stoned all the time, and I had not yet realized I needed a much more specialized doctor than just a primary physician.  

Anyway, I scheduled the laparoscopy and had no idea what to expect.  I don't know that I even saw my surgeon before surgery... perhaps briefly as I was signing papers.  My first concern was that when the anesthesiologist came to see me, he pretty much didn't speak English.  I was left wondering how he got certified to treat patients because a language barrier is not something patients want to worry about.  He might be a great doctor, I have no idea, but I was uncomfortable and wasn't sure he had comprehended or acknowledged anything I said.  I remember being wheeled into a cold, sterile operating room, and the next thing I knew, I was still in the operating room and was being wheeled back into recovery.  

Perspective

In the course of writing my post yesterday, I decided to google "endometriosis blogs" and see what was out there.  Maybe not the best idea.  There were a bunch of blogs, but they were, for the most part, seriously depressing.  One that stood out to me was actually titled "Endometriosis and Suicidal Thoughts."  I didn't read further.  I can state with certainty that even if I have to deal with chronic pain for the rest of my life, I have no desire to end my life.  

Anyway, these blogs and their titles made me think about my perspective.  I try not to dwell on setbacks or pain because it can become frustrating and overwhelming.  I wonder though if by not sharing the really bad times if I make it harder to understand what I am going through.  I wake up everyday and the first thing I think of is "check your pain level."  I'm probably not going to write like the world is ending or that I have it SOO bad because in my opinion, there is always someone who has it worse than I do. I now refuse to answer the question "rate your pain on a scale of 1-10" because I am terrible at it.  I was in very bad pain, but kept thinking there must be someone out there in worse pain than me, so that precluded me from answering 10 and probably downplayed what I was going through at the very beginning. I've learned how I need to answer that question if I'm in an ER but to me it is way too subjective to be effective.  That doesn't mean my life is easy.  I mean, 3 years ago, my life was pretty awful.  I was so medicated and the pain was so bad that today, I feel almost glad that I'm doing better than that.  But I'm not healed.  There is no cure for endometriosis.