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Aug 23, 2014 - 2 comments

So-

Yesterday was a hard day.  After speaking with me on Thursday and hearing about my lumps and bumps my surgeon wanted to see me ASAP.  So I got up yesterday at 6 am (usually the time I am finally getting some REM) and got on a ferry.  I saw her, and the nurse, and the counselor.  She examined me.  She thought I meant the lumps were inside.  Since they are not, it is not her area.  BUT- she is very concerned.  I had just assumed they were another endo symptom and due to the extreme inflammation I was experiencing but she said NO.  That every lymph node in my pelvic region is very inflamed and tender, especially in my right groin and between my vagina and buttock.  SORRY TMI MEDHELP!  I'm kinda an open book right now.  It's scary.  She said they needed to be biopsied by a general surgeon and I need another full CBC done- especially since I've been running a low grade fever off and on.

She also told me that I needed to be prepared that this surgery would not necessarily 'fix' me, as the last one did.  it was merely going to be diagnostic to see what was going on.  She's not certain she will find endo as my last scan in August of 2012 was totally clear.  She showed me all my pathology reports from past surgeries and explained that she removed everything in 2010.  The chances of recurrance are not high.  Also, because of how rapidly it's returned and escalated, and because she saw a mass on my last ultrasound, she thinks it may be adenomyosis.  If I don't want a hysterectomy and I want to conceive, I am going to have to find ways of dealing with this pain without any drugs.

Man.

I realize I'd made some very definite decisions in my own mind.  I have endo, I need it removed, then I will go off drugs get pregnant and live happily ever after.
Maybe this is not the case though?

I have decided I am going to get more active in finding non-narcotic pain relief.  I have found a series of exercises to release tension in the pelvic floor and calm things down.  I  have to change my tunnel thinking that this surgery is the answer and be more pro-active.
I am also going to try and lower my dose of the opiates.  This will be hard but I'm not going to be working for the next 2.5 weeks and so resting more.  Maybe if I change my whole mind set on this and work hard at getting things settled down then I will be able to do this.
In any case, I am going to try.
I know myself very very well.  I am going to want off these drugs as soon as surgery is complete (well after a week or so anyways)
I am not good at tapering, I get inpatient.
She told me I can only reduce by 10% a week to avoid throwing my body off so much that I stop ovulating etc.  Since pregnancy is my goal I need to be gentle.
I am currently taking 60 mg.  That will need to go up for awhile after surgery.  So if I can reduce by 20 mg that would mean 6 weeks of tapering which would be just about the same amount of time before I can begin to try to get preggers anyways.

I like this plan.  I am a control freak and always need to have a plan.

But then we have the lumps.  I refuse to google it as I know it's gonna tell me cancer and all kinds of other crap that I don't think is healthy for me to fixate on right now.
I am going to see my family doc on Thursday and I am going to get a referral and blood work and go from there.
I always feel better with a plan.
I am exhausted.  I fell asleep in the ferry line up and slept for four hours in the car (I NEVER SLEEP IN CARS) then I got home and slept 12 hours last night and I am still exhausted.  I have not been able to eat a meal in over a week, and my guts are all messed up.  I do believe my Crohn's is flaring because of the stress and I need to get that calmed down too.

I NEED to CALM down.  By any means necessary.
Calm.  Peace.  Tranquility.  No googling.

I took my house off the market.  I've hired other people to do my jobs.  I am going to a cabin on the ocean with no wifi.  I am going to do the Yoga Nidra every day, twice a day.  I am going to substitute 2 of my narcotic doses a day with tylenol and I am going to stay in a horizontal position as much as possible.  I am going to let Andrew do all the housework, grocery shopping, and cooking (Poor Andrew)
I am going to do the pelvic floor exercises daily.
I can do this.  I know I can.  I just have to shift my perspective.  I've been panicking and honestly, I have been returning to old modes of behaviour-
Pushing myself too hard and then medicating.
Danger.
Stopping that now before it's a train that is hard to get off.
I'm sure you will all weigh in with your thoughts and opinions.  And I will take them all, and appreciate them all.
Love,
Lu

Comments
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3197167 tn?1348968606
by clean_in_ks, Aug 23, 2014
Hey Lu......it' good to hear that you are "reigning yourself in" and continuing to surrender.  I had hoped weeks ago that you would stop doing housework, grocery shopping, cooking, driving your stick shift car, running errands, etc.

The help is there for you.....it always has been...but you have to relinquish your control.  Your man, your mom, and who knows who else will be there to do ALL these things for a spell if you are just willing to get yourself out of the way, let go, and accept the help.  You are WORTH it...do you not know this???

From all the reading I have done on swollen lymph nodes in the groin....it is RARELY cancer.  Usually an infection...and typically a viral infection.  It can also be caused from a flare up of an underlying condition such as autoimmune diseases which fit the bill for you too.  Seeing your primary and getting a CBC done is the BEST thing you can do right now, imo.  The fever you speak of is also indicative of an infection (whether bacterial or viral).  Many times if the lymph nodes are swollen due to an underlying condition such as RA or Crohn's....the underlying condition is treated....and the nodes will return to normal size.
In the meanwhile...since you aren't seeing the dr until Thursday....here's a "copy and paste" for you and a few natural tips of things you can do at home:

"Most swollen glands are due to viral infection. To heal the infection, it would be essential for you take complete rest to allow your body to recuperate and for your immune system to fight off the microorganism causing the swollen glands
◾Frequently drink lukewarm water with fresh juice of lemon laced with a teaspoon of honey. This solution is known to be effective in fighting off infection because honey has strong antibacterial properties while the lemon juice is rich in vitamin C, which is best for boosting the immune system.
◾Lightly massage the swollen area with slight pressure application. The light massage will improve blood circulation to speed up the healing process.
◾You can also treat the swollen glands and lessen the pain with alternate hydro therapy. Take two basins of water, one for warm water and the other for cold water. Get two towels and soak each of them on separate basins. Alternately apply hot and cold compress on the affected areas."

Did you read the sentence that says, "it would be ESSENTIAL for you to take COMPLETE REST to ALLOW your body to RECUPERATE"???????

That means no dinner outings, no trips to the post office, no "I just HAVE to do this" stuff.

I have been concerned for a LONG time about your definition of "bed rest" versus mine.  I don't know any other way to tell you this.  You will continue to get warning signs telling you to relinquish your control until you actually do it.
The teacher doesn't go away until the student actually learns the lesson.....ya know?

So, I will continue to pray for you....and am hopeful that you will let others do EVERYTHING for you for awhile.  It's hard, yes it is.  But it doing this.....it will add a new facet to WHO you are inside.  I know your spiritual beliefs and mine differ...and you are more into self-realization and self-empowerment...but....  In order to let go....we have to have faith that in letting go...some higher power out there has our best interests at heart.  

Sending you love~
Connie


1742220 tn?1331356727
by meegWpaw, Aug 23, 2014
Lu--

I am just not sure I know enough about this, though I googled adenomyosis, to really weigh in with an opinion.

So, all of the work for this surgery is going to be for a diagnostic exploration?

Im just not that sure Im so on board with your surgeon ... as I've told you in the past.  Im sorry!  I know you love her and I respect your opinion.  And I am no one to say.  Im not a doctor, what the hell do I know?  How come she didn't inquire further as to what the lumps were before bringing you in ... to tell you its not her area ... ?

I just feel weird about this path she has taken you down.

I don't agree that you should cut the pain meds.  Or whatever, lower them.  I want you to take the meds as you need them.  You have already borne such insufferable pain.  Havent you???

I know I told you about this woman I know in NA who had severe endo and she is a lot older than you and she's at meetings and doing great.  I feel frustrated with what they are putting you through.  I want all of these means to justify the end.

I guess I want to tell you to give up control of what you have no control over, and rest and try to take care of yourself the best you can.  The best you can!!!

I love you and I want only the best for you.  I don't mean to be critical of the surgeon if it is unwarranted and like I said I am just making my own observations.  I don't really have any knowledge to base my opinions on so im sorry if they're off base.

Meegs

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