Saturday, November 3, 2012

Health Update: Adenomyosis, Mirena, and Some Other Stuff

Today is a writing day, but I wanted to post something first, so expect more odd bits of info strung together without any real relation to one another.  Such is my way.  ^_^

After a summer filled with pain so immense it was untouchable by OTC pain killers, along with prescription pain meds and antibiotics, doctors, xrays, ct-scans, procedures, and mris, I finally have an answer, and for once, I am afflicted with something that can be cured.  The likely culprit:  adenomyosis, which is similar to endometriosis, except that it occurs within the uterus.  My doctor dismissed endometriosis rather quickly due to prior surgeries and the time duration for symptom onset.  She said that signs for endometriosis are usually present early in life and that there was no evidence of endometriosis during an abdominal surgery about five years ago.  Plus, the symptom onset happened steadily over a period of months this past year and then worsened suddenly with acute, localized pain.  We did officially rule out endometriosis with a surgical procedure, but adenomyosis can only be officially diagnosed after the uterus is removed and the organ tissue tested.

Treatment was started by using a Mirena IUD to secrete a hormone into my body that has proven helpful to many women.  In my case, however, I was in constant pain, with a chronic spot localized in the lower right quadrant of my abdomen that sometimes expanded to my lower belly and up toward my right ovary.  Other days, I had horrible cramping pain, which required prescription medication to control.  Other side effects I experienced over this two week period:  increase in hair loss, facial flushing (I'm usually paler than a ghost and my face was sunburn-red), rapid heartbeat, mood changes (anxious, impatient, agitated, depressed), pain, excessive bleeding, and throbbing, pressurized/crushing headaches.  In addition, a few side effects affected my preexisting conditions.  The chronic pain was near a nerve that runs down my right leg, which aggravated my MS in that leg and made it feel like I was going to "lose" it (one of my MS afflictions is that I'll lose partial feeling in my leg(s) or they will feel weak - I refer to this as "losing my legs").  And, mostly with the flushing events, I would feel very warm/hot (no fever), but I have an atypical form of Raynaud's Syndrome and my feet would still be ice cold.  In those situations, I was too hot to sit under a blanket and my feet would be sweating, but freezing.  It was rather odd to experience and frustrating. 

Probably needless to say at this point:  I told my doctor about my symptoms and we decided to remove the IUD.  The next day, I felt immediately better.  The chronic pain was gone, as were the flushing, headaches, etc.  My mood even felt better.  She suspected that my body was rejecting it and attacking it as a foreign body, so I'm on a short course of antibiotics to calm things down.  But to back up just a moment, after removing the IUD, which, in my case, was the best (and pretty much only) form of treatment, my doctor and I discussed the next step.  There are other courses of action, such as trying other hormone/birth control-related treatments, cauterizing the uterine lining, etc, but, in my case, the only next step was a hysterectomy.  The reason why I say "in my case," is because I am very sensitive to medications and my medical history, along with my symptoms, left us with only that option.  Cauterizing the uterine lining helps women where heavy bleeding is the main issue, but it does nothing for pain.  We decided to remove only the uterus so that I wouldn't be forced into early menopause (I'm not even 40 yet!), with yearly checkups to make sure my ovaries are still healthy.

Honestly, after being diagnosed with more incurable syndromes than I can count on one hand, I welcome this hysterectomy.  Finally, I can take control my body and permanently get rid of one element of my pain, which my neurologist believes will also help with my MS symptoms (the constant pain has just been aggravating everything).  (We did mris of my brain and cervical spine, and things are looking good - still have the spots, but the biggest spot is looking even better than it did last year.)  So...yes I'm nervous about major surgery, but I'm more happy that I have an answer and a solution.  I meet with the surgeon next week, and am on the wait list for an opening this month, otherwise I have two tentative dates set for December.  I'll be looking at an overnight hospital stay followed with 2-3 weeks off work, but my position allows me to work from home, so I can cut down my actual off time when I feel up to working (as long as I take care of myself first).

In other health news, another doctor took me off Topamax, which I had been taking to suppress dreams and aid with sleep.  Since then, I've noticed a drastic reduction in many of the symptoms I've been experiencing in addition to what was going on in the paragraphs above.  I had chronic and horrible joint paint, mostly in my elbows, hips, lower back, and occasionally in other joints like my wrists, knees or knuckles.  I was also cognitively disoriented, sometimes to the point that I could barely function at work and was worthless at home - I couldn't think of words, form cohesive thoughts, and was a growing danger because of short-term memory loss.  There was a time in my MS history where that had gotten so bad that I needed to leave post-it notes all over the house to remind me to do things, and I literally was a danger to myself - I almost burned our house down after starting something on the stove and wandering off due to getting sidetracked.  My doctor had told me upfront that Topamax in MS patients either helps or exacerbates their symptoms.  It did exacerbate my symptoms in that I had more numbness/tingling in my legs, full body weakness, and daily headaches, but until we hit 100mg, I was willing to deal with the side effects because the medication worked.  Now that I'm off of it, however, I wish I had done so sooner.  Within the first few days, the mental fog lifted and I was able think more clearly than I had in months.  I could watch movies and tv and put plots together, whereas before, I was a vegetable letting the story stream into my eyes where it dispersed into my brain like a mist never to be formed into a drop of water.  After a week, I noticed the joint pain diminishing.  Eventually, the numbness/weakness got better, and all but pain in my right hip remained - and it was pain from stiffness, not from the joint.  I finally knew what was MS and what was Topamax.  And the best part is that around the time he took me off the Topamax, I had discovered the dual layered Melatonin tablet and obtained his approval to begin using it at bedtime.  It did take some adjusting to dreaming again, but the melatonin has been an excellent replacement as far as sleep therapy goes.  I am sleeping much better now.  I think I mentioned this melatonin in a previous post, along with a supplement beverage called Neuro Sleep (the bottle says to drink the whole thing, but since I take the tablet, I only drink a little over an 1/8 of the bottle every night - one bottle usually lasts about a week).  What a great combination.

So there's the good news I've been waiting to hear all summer, and it couldn't have come at a better time.  I have something to take my mind off losing Neko and I'm in a better place mood-wise to deal with her loss (between the Mirena and Topamax).  I wrote a thank you letter to her doctors and staff at the hospital, which included tidbits about her life and some pictures.  I delivered it when I picked up her ashes.  It was devastating to see that little box.  My sweet Neko-chan has been reduced to a black bag of ash in a small wooden box.  :'(  But at least she's home.

When my husband called to tell me that David wasn't going to make it, I was sitting in a Wal-Mart parking lot with a box of tissues.  "Shadow of the Day" by Linkin Park came on the radio after we hung up and I cried alone in my car.  Given the song's lyrics, the timing was impeccable and made me cry harder.  It became David's song, and for a long time, I cried when I heard it, but now I can listen to it and just think of David.

On the drive home the afternoon we had to euthanize Neko, I knew that listening to music would have a similar affect.  I don't listen to the radio anymore, so for a while, I drove in silence, not wanting any song to have that influence.  But I knew that in time, during my grief, it was inevitable, so I picked the song(s).  I didn't have "Shadow of the Day" on my flash drive, but I did have Dead to Sunrise's "Too Late" and Linkin Park's "Waiting for the End."  I played both.  Both made me cry harder.  Both are now Neko's songs.  But that's okay with me.  I think it's fitting.  All three songs fit well together, and since they are all sung by the same person (Chester Bennington, the lead vocalist for Linkin Park, started Dead to Sunrise), the somewhat soothing effect of  "Shadow of the Day" adds a calming element to the other two songs.  I can listen to them and remember fond memories instead of feeling an urgent need to cry.  I have had to find new ways to cope with this loss, and mixing these songs into my playlist has actually been helpful.

Speaking of playlists, I'm always behind the trends and don't discover "new" music until long after it's out in the mainstream.  My latest discovery is Lady Gaga.  Yes, I am that far behind, and yes, I like Lady Gaga.  Until recently, I had only heard "Poker Face" a few times, but I have seen her make appearances on shows and so forth, and I liked her every time I saw her.  She has the aura of a strong woman with hidden vulnerabilities, and she seems honest and genuine, as well as approachable, like a normal person even though she's this huge sensation.  I realize that makes me sound like I idolize her, but these are merely statements of observation and the only reason I mention them now is because I've been enjoying her album "Born this Way" - particularly "Government Hooker," "Bloody Mary," and "Heavy Metal Lover."  Finding "new" music is also nice during a mourning period, since it can draw one out of the past (where one tends to dwell on nostalgia).  Next on my buy list is Foster the People (again, I know I am SO behind).  I can't remember how I came to find them, but I love "Pumped Up Kicks" and "Houdini."  I have to laugh at myself.  For loving music as much as I do, I should go back to listening to the radio...but no.  I won't.  After all, the radio wouldn't have helped me find Gus Gus.  ^_^

In writing news, I'm still working on my one page synopsis and I'm still not sure what to cut.  I've also written a few pages of ideas to move the plot forward in the third manuscript and have been thinking a lot about the scenes in the second manuscript.  This is all basically me revving up to get back into writing mode.  I am going to write today, but then I have to go into agent hunting mode again (unless I can get my synopsis done, because I have an agent to query with that).  I had two queries out and received a rejection yesterday, so it's time to keep moving forward.  After experiencing the hurt of the first few rejections, I've gotten into the mindset that I should expect rejections and it's worked.  I get one and just move on.  It only takes one yes and it's that one yes that I'm searching for.  Writing and reading are so subjective and so competitive that expecting a yes every time just isn't realistic or logical. 

You know - I think, just maybe, one of these days I'll write something short and to the point.  Um...-_-'  Then again, anyone who's read my manuscripts or this blog knows how fond I am of words...so maybe not.    The blog has seen a large upswing in traffic, so I'd like to thank everyone for reading and putting up with my eccentricities.  I hope you're enjoying it or finding the information you're looking for.  The "Writing as Catharsis" post made me realize that my posts are so scattered because I just enjoy writing, but I do need to work on my rambling.  ^_^

2 comments:

NerdGirl said...

I'm so glad to hear some good news on the medical front, most notably that going off the one medication has lifted the fog that has encased you and kept your from experiencing things fully.

Kastie Pavlik said...

To follow up on the hysterectomy and the effect it had on my MS - The surgeon had a cancellation come in while I was meeting with her for the 1st time, so she got me into surgery within two weeks (my original date was over a month away). IT HURT. A LOT. In post op, as I woke up, I was woozy, but I remember crying and moaning, and a man standing beside me. He tried to comfort me by talking in a soft voice, and apologized for the pain while explaining that he was increasing the pain medications as quickly as he could - but even then, it was going to hurt. I don't remember much about my hospital stay, but the next day, I could not walk and could not swallow. I choked on hot tea and struggled to walk with a walker - I felt like a giant toddler. I felt so odd - the ground was so far away - but as long as I went slowly and made sure each foot was in place, I made it. And that helped me get better, but my gait improved greatly after I was off the pain pump and switched to oral meds. They wanted to remove the catheter as soon as possible to avoid increased risk of UTI (I did get one), but my walking troubles meant it was in longer than anticipated. The first urination was very painful and very difficult. Obviously, I couldn't shower, but I had the foresight to pack wipes, facial toner/cleansing wipes, a tooth brush, mouthwash, etc, so I was able to freshen up with help in the bed - but still, that first shower the day I was discharged felt SO good! I had multiple IV bruises and the pain pump "burned" my vein, which took months to heal. Instead of a one night stay, I stayed three days and two nights, and instead of 2-3 weeks off work, I was off for 2 months. The surgery and physical stress on my body threw my MS for a loop, that's for sure. Don't underestimate the need to rest after surgery like this. If you have MS and need surgery, definitely discuss with your neurologist what effects it may have on your MS. It took a while to regain normal walking skills - I was on a walker the first couple of days and then had to walk along the walls for balance (to wobbly to use the cane safely). I have experienced some atypical healing and have required silver nitrate cauterization twice, and have another follow up next week. That said, even through all the pain, I would do it again. My uterus did test positive, so the pain would have gotten worse. I'm not at 100% - I do still have MS, after all - but I feel so much better because of the hysterectomy. This permanent cure beats any long-term treatment, I assure you.