Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Tuesday, August 30, 2011

You know what? Bring it on

I've been hesitant to post much about where I'm finding myself since my random attacker the other day.  I've wanted to keep everything limited instead of letting the general public know all because I don't want to deal with nastiness.  But that's not how this blog works.  If I can write about some of what I have in the past I most certainly can write about the present. If someone chooses to be mean about it then i hope they will be brave enough to leave a name or a particular reason you feel led to be mean to me.  An email address would be nice.  Mine, should you ever want to use it, is on the sidebar.  Attack away if you must, if that somehow makes you feel better about your life..  Although really?  The best time to attack someone is typically not when they are manic, weaning off pain meds, somewhat stressed, not sleeping well (see mania),bored, and swollen and bruised where nobody should experience swelling or bruising.

So, the final test results are in.  I had multiple cysts of fallopian tubes which are one of those things the doctor said "doesn't USUALLY hurt but could" versus Google which has plenty of reputable sites saying that these cysts can imitate ovarian cysts and can be painful.  So my interpretation of that is "these sometimes hurt and based on other findings there is a reasonable chance that was my pain, or at the very least we can hope for that until enough cycles are past that we know what the mirena can and can't do for me.  Most other things were pretty typical/as expected.  Uterine yuckiness, nothing abnormal.  Etc.  My doctor continues to feel that my pain is going to be associated with ovulation and that we wait that out to find out if it's true and then if it is we deal with it then.  I am going to start preparing for this by talking to Dr. Brain about some "what ifs" to try suppressiving ovulation if needed without making me sick or manic.  Better to be ahead than behind on this.  My bladder biopsy was normal, however here's where my life gets to be crazy for a while.  When I first saw my surgeon (why she has no name is beyond me; I need one for her; since I don't want to address her body parts of choiceand everyone says she's a sweetheart (that exact word) I shall call her Dr. Sweetheart) it was because Dr. Body wanted me to be checked because of blood in my urine.  He thought I needed the cystoscopy I just had; however after we went through this incredible process to get in to see her because it was kind of an end of her subspecialty she decided to do a straight cath and test those urine cells for abnormalities.  This was in May 2010 and Dr. Sweetheart was really happy to tell me my cells were normal and that the bleeding was nearly certainly uterine and so no more testing needed.  When all this was being set up she decided to do the cystoscopy as part of an overall thorough exam for pain.  (I read today and have no idea why it took until today that women who have been sexually abused can have a very hard time getting pelvic pain treated because of difficulty isolating it, difficulty discussing it, difficulty standing the testing.  I guess I knew this but I needed to see it was a fact, not just something I fail at.  I now understand too that when it feels like I'm not being  believed it has a great deal to do with not disbelief but the need to remember that I am at a disadvantage when it comes to handling this.  It also means that good doctors believe that someone like me needs very thorough testing because isolating, describing and given an accurate portrayal of pain in this region is incredibly hard after you learn to ignore pain and really all sensation in part of your body.  Seriously, this is TMI but  this is how unaware of pain in the pelvic region I can be:  Dr. Sweetheart told me that I should expect to have a good bit of soreness in my "bottom" (this being the term of choice used by gynecologists who are especially good with abuse  survivors.  I  do not know why but notice it in  anyone who has been able to handle my PTSD well.  Anyway, I knew that the wheelchair out of the hospital hurt my "bottom" and that sitting up in chairs could feel sore.  It wasn't until yesterday when I was trying to determine where some discharge was coming from (there are several angry choices) that I discovered that my, um, birth canal, is still swollen shut.  A week post op.  Yet except for the wheelchair ride and one other random moment of sitting funny in Dr. Body's office yesterday I have not been aware of any pain there.  Today I must have a little less swelling as sitting funny makes me aware of where these wire things that come out of my IUD are pressuring into the sore area (they get cut later I believe. I really need to read about this thing in my body).  I never felt this soreness enough to think of it, yet my normal pelvic involves the small pediatric speculum they can find and the exam is somewhat limited by what I can tolerate in terms of palpation. I've had the full thing done and can't tolerate it; Dr. Sweetheart does what she has to and I suspect will use ultrasound to monitor beyond that if needed.

OK, I just lost even myself.  The point was that  every test in the world will be done to get things controlled and to rule out every possible source of pain that I may not be able to describe well.  So the cystoscopy was done and once again my bladder was drained the the cells sent for evaluation.  This time it appears we may have found a new problem, as the cells were "atypical''.  That's not necessarily bad, it just means that further testing is needed, especially because I have a kidney with a "thing" on it.  This was found somewhat accidentally about 3 years ago and has been assessed a few times.  Nobody has known what it was other than it is apparently fairly large, has been called cystic as well as other things, and it is vascularized.  I think the deal was that I'd just have ultrasounds annually to watch it and then I had whooping cough when the last was due and then this, and  the end result was it hasn't been seen for nearly 2 years.  At last discussion the guess was that it was a type of vascular birthmark tissue since that is more common in someone with extremity vascular birthmark.  So now that thing needs to be figured out as well as determining what is making the cells atypical.  It is possible that it was some random infection or something and a repeat test will show normal cells and imagining will show a stable kidney "thing".  Atypical can mean anything from some cells look funny because of infection or inflammation to cells that are cancerous but aren't showing definitive signs of cancer.  I'm going to guess that things will be fine with the next test (although I'm not positive how long it will take before they can say everything is healed enough to ensure accurate results).  I know the cells in the bladder and urethra (affected by the procedures and catheter) heal fast but how long they go before they forgive what was done to them I do not know.  I do  know there was an impressive speed with bleeding after the biopsy of my bladder.  In recovery they drained my catheter and it was bright red blood.  A few hours later I said something to Dr. Brain about it being gross (I couldn't see it yet) and she said it was actually good and sure  enough the urine never was icky again.  I  suspect that the bloody part was from immediately after the biopsy and that the bleeding area was cauterized but again I have no idea how long it takes before abnormal cells aren't expected.

Time for a new paragraph.  Sorry, don't know what's with my writing today.  Except lack of sleep, lingering valium and the one!! pain pill I've had today.  Anyway, at this point I'm moving on to another doctor who Michal has hilariously named Dr. Pee.  Dr. Pee is a urologist and I  will see her next week.   Per Dr. Sweetheart I will have another test done before I see Dr.Pee, some kind of specialized CT scan that will focus on observing how dye passes through my urinary tract.   I'm completely happy since the dye is IV.  I drank  contrast once when the cystic/vascular/lump/"thing" was first being assessed and it was awful.  I gag so easily that I asked to please drink it somewhere I could vomit privately if that happened.  I expected to go to a cubicle.  I did not know that this was the 2nd to last day this hospital was being used (moved to a new building) and so they actually sent me and 2 cups of "orange cream" barium into a public bathroom.  I do not want to know what I ingested with that stuff, since I had to set the cups down a few times while I gagged and vomited. Ugh.  However, despite that test being supposed to be before Dr.  Pee per my discussion with Dr. Sweetheart yesterday and her discussion with Dr. Pee prior to that. So I have a call in about that and there is some hang-up with orders so hopefully they'll work that all out without my having to miss work to get it done.

And that's my other big news.  I see Dr. Brain  next week.  If we have gotten my sleep back to normal and the mania controlled so I go back functioning at my best then I will be returning to work on the 13th.  I honestly won't be totally shocked if that takes an extra week or so but if it does so be it. I don't want to go back not fully ready.  That is a risk with going back when I am and  we'll also have to factor in recovery fatigue with bipolar fatigue. Dr Sweetheart has basically said I can take 4-6 weeks which is a typical leave  or go back  when I  feel ready.  I think if I am psychiatrically ready I'll be ready in general.  I'll have some days off for follow-ups from surgery and possibly for Dr. Pee as well, but work has been notified of that as well, that I'm not done with the entire process for a little longer.

So wait and see is back.


Anonymous said...

Wow - that was a lot of info, Jen. The not being able to identify "bottom" pain makes perfect sense to me after knowing what you've been through. And now that your docs know, they can care for you very intentionally, right? Your paragraph had lots of information but I followed you easily.

Dr. Sweetheart sounds kind of cute, but Dr. Pee? hahaha - is Dr. P a male or female doc?

Typical leave for your surgery is 4-6 weeks, huh? Well... doesn't that just prove your ugly commenter wrong, wrong, wrong. After all, only laprospcopic surgery, huh? Yeah, right.

So, sounds as though there may have been more than one reason for your pain, and also that your pain has greatly lessened (1 pain pill today?) - that's excellent! Could you please take all the time you need to recover 1000% please? Please?

I will keep checking in. Good thoughts and healing prayers are going out to you!


Anonymous said...

Dr. Sweet Pee? Hmmm. You're getting more lucid all the time. Definite progress, Miss Jen! I sense light at the end of the tunnel, the speculum, whatever...your healing is on the way!

Am I too silly tired to write sensibly? Probably!

Caring about you! Michal