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

Saturday, July 23, 2011

This week

(All grammatical and spelling errors courtesy of Vicodin).

This week I've posted a lo tof snippets and not a lot of explanation.The last real post states Dr. Brain had told me that I possibly could stay on my MAOI and what did I think of that.  I thought no.  I spent a lot of time talking to Dr.Mind about this and he was quite supportive of my feelings/I thought decision.  Dr. Brain, it turns out, was not.  After a lot of time consulting with various anesthesiologists she pretty much told me I needed to follow this protocol that has just been developed for volatile patients on MAOIs at Cleveland Clinic.  I would stay on the MAOI and everything would be addressed in a way that would keep me safe.  I was not happy.

Then Wednesday I had the great panic attack.  I think that knowing that not only can I not responsibly have children what with the whole crazy mood swing things the fact I probably have a diagnosis causing infertility and that my niece is loved so much but is still not mine and that I love her so much and yet will fail her throughout her life because of a stupid disease and that she is going to sometimes see me not as I want her to, it hurts.  I had a few uncles I thought were perfection when I was tiny and I hate that she'll go from thinking "Aunt JEN!  She loves and plays with me and always brings me a book!" to "Aunt Jen!  I love her but I know that sometimes she can't do everything all  my other aunts and uncles can, but she does always play with me and brings me books".  It's all complicated and I can't express it well; I need Dr. Mind's help her and am under strict orders from Dr. Brain to work this out.  Dr. Brain called me soon after the panic attack and talked to me for a long time.  She told me she wasn't mad when I thought she was, just trying to be very factual, I think because it was one of the few times ever that she'd decided my opinion needed to be overridden and she was trying to express why when to me it felt like she was ignoring my thoughts.  She told me a lot more about the protocol, and explained that to be allowed into it she had to give a clear statement that she believed without the MAOI I would be at high risk for becoming suicidal.  The way that it had to be stated (she read it to me)  made it clear that first she'd been afraid to have me off, and second that it is totally unsafe to consider it.  Also, the protocol makes it very clear at all times that meds are careful monitored and it sounds like staffing will be limited to specific people who are the only ones allowed to give meds, and those people will all be hyper-aware of the restrictions.

The next thing has been trying to find out how things are going to work out.  There was a lot of confusion, and continues to be, as there are currently 1 psychiatrist, 2 gynecological surgeons, 5 anesthesiologists, 1 scheduler, and some kind of nurse involved in this.  I'm told different things by different people and so I have no idea how long I'll be hospitalized (per Dr. Brain the developer of the protocol says 1-3 days and it sounds like the night before as well as after surgery; I'm scheduled for 23 hours per the surgeon).  I have pre-op moved up and it includes a long anesthesia consult and at that time I'll find out the truth.  Pre-op is 2 days long now so I can see both surgeons as I have some major questions regarding my laparascopy that I didn't think to ask when I saw the doctor because I felt so horrible.  So until then I don't even have a clue how long I'll be off work.  Given that I'm doing this as a very complicated patient (the special protocol I think has not been used many times at all), ashtma, very limited options for pain management  (aside from tylenol there are only 3 drugs possible), and I'm having multiple procedures all of which are expected to cause bleeding, I am expecting to have a little more recovery than the typical person having a laparascopy.  Even more complicated is that nobody knows that the laparascopy will do; it could vary from checking out my pelvis and finding nothing at all (I think biopsies are still taken) to finding any amount from a little to a lot of endometriosis and removing it, to removing my ovary.  That all of course is going to affect healing and recovery time as well.  So until I have pre-op i just have to wait and try to stay calm.  This involves meds, lots more than usual.  The real plan was to "pulse" my antipsychotic this weekend to try to rapidly stabilize me but since I wound up needing vicodin more that's on hold.  So I've made about 200 calls to Cleveland Clinic and still don't know more than I won't know much until the 17th.

To top all this off one day I came home from work and my deadbolt was broken and I was locked out.  Other entrances are available, just annoying, and I just now (had to wait for cool) messed with lock long enough to finally remove the old one and while I couldn't get the new one on I did manage to give the appearance on the outside that my door has a deadbolt, which around here will suffice until tomorrow.

I'm training an assistant and finding that having to talk for 8 plus hours/day is also taxing.   I'm used to lots of quiet breaks driving between patients, having my car organized a certain way with everything I need in the front, etc.and now all that has been changed.  Temporarily, but changed nonetheless.

I think that's about it for why I've been a mess this week.  Next up is figuring out how to get to sleep when the vicodin plus my regular meds didn't do it.

Fun stuff.


Anonymous said...

Whew! You're going through so much. I admire you for all your self-awareness. You say you have the "control" issues but you're such a responsible person who has so many factors to juggle all the time. You said "Dr. Body is praying for me which is just awesome." What a caring team you have. You also said that it's "time for faith" so I will pray you can find that balance between "hypervigilence" as you take care of many necessary details and "rest and peace" as you trust in God.

BTW, I think you mean "period" (flow), when you're saying "cycle." "Cycle" is the entire "monthly" (or whatever) series of hormonal changes. (Just one of the things that I notice many people say. :) )

I hope it helps you to know how amazing I think you are. I want you to be free of fear and to look for comfort in a scripture that a friend shared with me today.

1 Peter 1:2
Amplified Bible (AMP)

2 Who were chosen and foreknown by God the Father and consecrated (sanctified, made holy) by the Spirit to be obedient to Jesus Christ (the Messiah) and to be sprinkled with [His] blood: May grace (spiritual blessing) and peace be given you in increasing abundance [that spiritual peace to be [a]realized in and through Christ, [b]freedom from fears, agitating passions, and moral conflicts].

Love and prayers, Michal

Just Me Jen said...

Nope, this time cycle was right...45 days in May-June, 21 days to this one. 21 days before that. Craziness and it's gone on for so long it's started to seem normal.

Anonymous said...

I hope you're able to take some comfort in the encouragement that I'm sending!

Blessings, Michal