Late Nignts

As of late, I have taken to making different types of jewelry that require me to think, as a distraction from what is really happening. I make them whenever I can not keep my mind from going where I wish it not to be. Where does my mind go? To the pain, to the anger, to the darkness.

Mornings I wake, I am slow to rise from bed and shower, as my body is so tense from the night of pain. Once I get showered, the nausea hits so hard I feel if I breathe I will empty my already empty stomach.  I lay on my back, on the yoga mat, and do my PT stretches to help loosen the IT band in my thigh, hoping for relief from that pain. I can't sit in certain positions now, due to the IT band pain syndrome and the bursitis in my hips, these days. PT only seems to anger it more, and place me in pain for days after a session.

By late morning I am in need of a quick nap, depending on how bad the pain and exhaustion are at the moment.  Even drinking caffeine does nothing to wake me, taking vitamins, nothing seems to ward off the "must sleep now" feeling. In the afternoon I try to do as much as possible to keep up the house or work.

At night, the pain is unbearable. I take anti inflammatory medications, even a pain pill if needed, they do little to put me to sleep, or to help with what I am feeling. My hips burn with pain, my insides from my belly button to my inner thighs ache with every move. I feel like someone is inside, twisting, pulling, zip tying everything together. Yes, even after a hysterectomy, even after excision, I am fighting. I get tired some days, of fighting, of having to say, yes I walked to the mail box, but I still feel like shit.

Everyone has a cure for my endometriosis. Eat this, don't eat that, do this, don't do that. Really? Do you think if there were something that cured this, we would all be on top of it and be doing it?
This is why I get so angry with the debates on medications, big pharmo, Dr's blah blah blah... People don't understand to me, they are saying "there is nothing wrong with you, that pain is not real, it is just the Dr wanting money." I freaking WISH!

Words of frustration from a woman tired of waking up and knowing that the day will hold pain, either now or later. Knowing that it will likely hit while I am driving, that pain, that feels like someone just stabbed three huge knives into my pubic bone and just above it. I will double over the wheel, do everything I can to breathe through the pain and drive. I refuse to give up anything more to this disease(s), so I continue with life as much as I am able, even if it means having to pull off the road until and attack passes. Lately, I find I get a twinge of pain in the left lower abs, and then a full on flare of "WTF was that??" pain. And yet, I tell it to kiss my ass, I am going to do whatever it is I wanted to do.

Keep trying Endometriosis and your evil little twin sister IC, but you will not, can not stop me. I will find a way, always, to live my life. And I will show up in March and I will march against you, unified with those like me, and I will enjoy it, as everyone there will understand!

Endo March 2015
My biggest goal set to date.

I'm not sick, I have a chronic disease.

I am not running a fever, I do not have a cough. I am not weak because I was up all night with a stuffy head or nose. To look at me, you would not know anything was wrong with me. You can't see these diseases, you can't witness what they do to me.

Why do I say the above? Because, I am sick of hearing that I am sick, or I am "not right" or I am "weak". Let me assure you, I am in pain, yes, but I continue my daily life as much as possible without complaining. I get up, I shower, I take my children to school, I work if I am able, I attend pool workouts and physical therapy. I may move just a bit slower, but chances are, I will keep up with you. Why? Because it is what I do, it is how I am. I refuse to slow down, I refuse to stop doing something I love because you see me as "ill" or as "weak".

I do all the daily things you do, I simply do them with pain that sometimes drops me to my knees. But I continue, I don't give up, I don't give in. I am not weak, I am strong. I am stronger than those that have no mountains to climb daily, and who can get from point A to point B without feeling their insides are being twisted in barbed wire.

Pain. The nurses at the ER will ask you "On a scale of 0 to 10, what is your pain level?" And you answer with your number so they can assess your urgent need for pain intervention. When I go to the ER and they ask me that question, my number is always lower than what they would expect. The racing heart, the sheen of sweat on my body, the high pulse tells them I am in excruciating pain. Yet, to me it is not horrible, it could be worse. Why? Because I am used to this pain. It is daily, it is nightly, it does not end.  Why do I do everything I can to hide the pain? Well like every woman with this damned disease, we don't want your pity. We don't want your "understanding". We just want to live our lives, the best we can, without judgment. Weak. Not even close. I've had a child, all natural, and I would do that everyday for the rest of my life, than to feel this pain. Yet, I still function in life.

I hate, HATE, being treated differently, I hate admitting I have these two diseases. Endometriosis and IC are horrible, painful, and no one can do anything to help. But call me weak, think of me as needing pity and I will blow up at you. I don't want your pity, I don't want you looking at me as though I might fall apart if you touch me.

I am tired of being told that people think I am weak. I'm angry right now. Very angry. I am sick of the bullshit. I am sick of needles, of ER visits, of Dr visits, of PT, of insensitive assholes.  It is not okay to dismiss me, or any woman with this in her life, as simply "weak,sick, not right". How dare you!

I have my support team, I have amazing Dr's to help me. I have days when I want to scream at the top of my lungs in anger over everything. I accept this is my life, I accept I will never feel 100% better and pain free. But that does not mean I have given up. It simply means, I'm living my life to the fullest, and my life happens to include two chronic pain diseases. They are not my life, they are just a part of my life. If you can't see that, then step away and make room for those that do and can.

It's truly that simple, if you make my life more complicated, well you have to go, because things are complicated enough. Rant over.

My Surgery Report....

Finally, I have been given my report.

Room #: Attending: Frye, Lance MD

Admit Date: 07/29/14
Dischg Date: 07/29/14

DATE OF SERVICE: 07/29/2014


PREOPERATIVE DIAGNOSIS:
Endometriosis, site unspecified.

POSTOPERATIVE DIAGNOSES:
1.  Pelvic adhesions.
2.  Endometriosis.
PROCEDURE:
1.  Diagnostic laparoscopy.
2.  Fulguration of endometriosis.
3.  Peritoneal biopsy.
4  Lysis of adhesions.

FINDINGS:  Normal right ovary.

DISPOSITION:  Stable to PACU.

ESTIMATED BLOOD LOSS:  5 mL.

IV FLUIDS:  1000 mL

URINE OUTPUT: 100 mL

DRAINS: None.

PROCEDURE:  The patient was seen in the preop area.  Risks, benefits, indication
and alternatives of the procedure were reviewed with the patient.  The patient
agreed to proceed and signed the consent.  The patient was taken to the OR with
IV fluids running and SCDs to lower extremities and anesthesia was obtained
without difficulty.  The patient was placed in the dorsal supine position.  A
sponge stick was inserted into the vagina for uterine manipulation.  An
approximate 2-cm incision was made immediately inferior to umbilicus with a skin
knife.  The superior aspect of the umbilicus was grasped with 2 towel clamps.
The abdomen was tented up and Veress needle was inserted through the incision,
Veress needle felt to be in place, the position was checked by placing saline
drop test.  This was seen to further drop into the abdomen so the needle was
connected to CO2 gas, this was started at low flow setting and it was seen to
flow freely, it was then advanced to the high settings.  Abdomen was then
insufflated to an adequate distention of 15 mmHg.  The Veress needle was then
removed and a 5-mm trocar was then placed.  Laparoscope was inserted through
this port and then two 5 mm trocars were inserted in the bilateral lower
quadrants under direct laparoscopic visualization.  Trendelenburg position was
obtained to facilitate moving the bowel from out of the pelvis.  Next, a
atraumatic grasper was used to facilitate movement of the bowel out of the
pelvis, it was noted that the patient had multiple pelvic adhesions which were
lysed using scissors.  Hemostasis was noted.  Full examination using laparoscope
of the posterior cul-de-sac as well as the peritoneum in the pelvis was noted to
have multiple vesicular lesions.  Atraumatic grasper was placed on the vesicular
lesion and removed with scissors.  The specimen was sent to pathology.  Using
fulguration at the site of biopsy, hemostasis was noted, other areas suspicious
for endometriosis were fulgurated as well.  The pelvis was then copiously
irrigated with the suction irrigator and irrigation was removed, it was noted to
be completely hemostatic.  The ports were all then removed under direct
visualization.  The camera and laparoscopic ports were then removed and the
abdomen was desufflated.  All the ports were closed and the patient was taken to
recovery room in stable condition.  The patient was discharged home today with
ibuprofen and pain medication.  The patient before surgery as well as family was
discussed to have an appointment with Dr. Frye for postoperative check.


__________________________________________
Larissa Smith DO

__________________________________________
Lance T Frye M.D.
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Fulguration, also called electrofulguration, is a procedure to destroy and remove tissue.
vesicular lesions endometriosis