Combat armoury assembling sir!

I forgot to follow up on the disability thing. I tried to file for state and federal (Social Security) disability on March 16 and 17 respectively. I was turned down over the phone by state and got a rejection letter in the mail from federal after being grilled for an hour and a half by phone by them.

I am not shocked, nor surprised.

Today was the New Moon. I spent the day cleaning house (cuz even housecleaning stopped happening in the past month) and only putting healthy food in my body. I moved about calmly and deliberately and tried to remember to breathe and not feel so overwhelmed by life in general.

In general, I’m really bitter right now that I’m having pain again, not just pain mind you but continual pain. Before my surgery, I experienced moderate pain and fatigue up to two weeks before menses every month. Surgery brought that down to a few days before menses. This gave me back a week and a half of my life every month for two years until November 7, 2008, when complications from a bad ovarian cyst took hold, which left me debilitated for all of November. I experienced nine good days in December (not consecutive), then had a much better month both in January and February.

Now, something’s up again. Something is wrong. It’s not ovarian pain. It’s not a cyst.

At time of surgery, some endo was found right near the bladder. It was cauterised instead of cut out because the surgeon was afraid she’d puncture my bladder. Cauterising the surface tissue does nothing for the disease that’s deeper in. I know the endometriosis is growing and spreading again.
On top of getting pain two weeks before menses again, I’m now getting lots of bladder issues (frequent need to urinate but can’t, feeling of urinary tract infection (UTI) coming on). I’ve only had six good days this month (not consecutive). If a UTI were coming on, I’d have had it already. I used to get them all the time as a child (now known by endo experts as a possible early warning sign of endometriosis).

My annual gyn visit is in one month. I’m sick of doctors telling me I’m too pre-emptive with stuff, even though it turns out I’m usually right. But I’m going to wait on this one. I’m going to keep gathering evidence over on ReliefInsite.com and through my calendar and journal, and present it at my appointment, and demand my urine be checked for blood to rule out endo perforating the bladder. I’m going to get it definitively on paper how far my uterus is tipped (an ultrasound tech in December told me I have a tipped uterus but didn’t note it). I’m going to get it ruled out if possible if either A) endo pulled my uterus that way like it had done to my ovaries and/or B) the tipped uterus accounts for some of my pelvic pain (depending on how far tipped it is). If the discomfort worsens or doesn’t otherwise improve, I’m going to first rule out UTI and then demand Interstitial cystitis (IC) be ruled out, too. This means I will have to go for a cystoscopy and will have to have my potassium levels checked. My friend, who has IC, says he is confident that I do not have it. This of course reassures me greatly.

I spent time today reading about pH Balancing, and decided after seeing several websites advertising supplements for balancing, that I should just go down to the local hippy store and see what they have on tap. I came home with some pH strips and supplements for pH balancing. My first urine strip at 8pm came out to 7.5, which is in the high end of the normal range. I forgot to do the saliva test so I’ll do that later.

phrange

 

I also bought more goat milk yoghurt and flax oil, and will be starting up the Budwig Diet again (I let it lapse because I got tired of putting effort into food prep, but I must accept that’s my life, now).

Last night, I got to meet one of my husband’s high school friends whom he just reconnected with (it’s our 20-year anniversary this year, so classmates are popping up all over the place). She’s a physical trainer, and showed me some pelvic strengthening exercises.

Today I set calendar alerts on my cell phone to remind me to take my supplements, because I’ve fallen behind on that again, too.

I need to also set calendar alerts to remind me to do Qigong and Chi Nei Tsang every day, and the exercises my hubby’s friend showed me. I’ve been doing it when I remember, it’s not like I’m not doing it at all, but still.

I have a sneaking suspicion that after about three days of all these alerts going off, I’m going to become Edie in AbFab, throw the phone out the window, and scream GIVE ME BACK MY LIFE!!!

Stay tuned…

Always with the catching up

NOTE: This post contains references to relations between a married couple. You know, hootie hoo, insert tab A into slot B… that sort of thing. It’s on topic!

I’m looking for a job full time, researching and blogging for endometriosis awareness full time, and going to job interviews. So now my pain diary is falling behind. Don’t even get on me about ReliefInSite or CureTogether – I’ve barely touched those, either. Always playing catch-up.

So let’s go back in time once again, and then get caught up to present day.

Thursday March 12 was the ant invasion on the heaviest day of my menstrual cycle. My husband brought home peppermint and cinnamon oils. We tried those in dilution, to no avail. The next day, I said screwit and applied cinnamon oil directly. That seems to have worked.

I noted that I felt better on Friday, March 13. I continued to feel better. I did go to the doctor and saw whomever was available – Dr. Tsao was good to me. She told me black stools are normal when taking iron, and nothing to worry about. She sent me for a blood draw. A week later it came back that my iron levels, despite having taken all that iron, were still low!!! She said my levels were on the low end of “normal”, but still low, and to just continue taking the supplements as I’d been doing. I backed off anyway, though. I’ll just take the recommended dose for the next month and see how that goes.

labwork_ironlevels03162009-summary

I did get to Calistoga and had a nice time. I swam in a 102°F pool, I got an hour-long massage, and I giggled with a gaggle of women and we all helped our friend have a great, low-key bachelorette, just what she wanted.

http://www.indianspringscalistoga.com/

http://www.indianspringscalistoga.com/

I did get out to the nightclub for the 16-year anniversary party of that club’s existence. Had a fun time. Danced my little patootie off.
img_0058

I did get to the job interview on Tuesday, March 17, and I did great, but as expected, I did not get the job, because of my health condition. She stated it directly as the reason why she did not hire me, but thanked me for being forthright.

Now, I don’t really talk about this … but really I should…as uncomfortable for me as this is, it’s important for me to be able to track back and relay this info to my doctors…I was intimate with my hubby on March 17 but I had pain and spotting right after. I am clinically diagnosed with dyspaneuria (pain with sex) as part of the larger endometriosis diagnosis, though doctors can’t say for sure if it’s because of the fact that I also have a tipped uterus or if it’s because of the location of the endometriosis in my pelvic region.

The uterine/bladder pain continued into the next three days, with moderate low back pain as well. So Tuesday was mild to moderate uterine pain, Wednesday was moderate uterine plus low back pain, Thursday was on and off pain in uterine area and low back, and then on Friday, it worsened. I noted that I felt the need to urinate frequently. This began overnight, and worsened through the day on Friday. I had stinging pelvic pain, and I also developed hip pain after walking in San Francisco a mile and a half from my gynecological surgeon’s office back to bus station. I could have taken the bus, but I hate taking the bus because I really don’t like being in that close of proximity with strangers. I had too much mental energy going on and preferred to walk.

On Saturday, March 21, the pain was gone. I did get my hair coloured, and it turned out faboo! My husband liked my new hair colour, too. >:)
steph_newhair03222009_8
More intimacy ensued, and there was no pain during or after! (the month of March is by far the most action I’ve given my hubby in a long time. Wish it could be like this all the time, with no pain of course).

On Sunday, I had another job interview, and it went really well, but again, I’m not holding my breath.
Sunday evening, we joined up with friends at a local theater which was abruptly shut down after longstanding disagreements and negotiations between building owner and tenants failed to produce an outcome desireable to the owner. People were out collecting signatures to try to persuade the owners to reopen the theater. We saw our last show there with friends, and I had two glasses of wine. When we got home, my husband handed me a shot of whisky. It had been a tough day – we were both wrecked emotionally by seeing our friends literally weep because the place they got married in was now shut down. I promised the guy doing the paper petition that I’d help him also get an online petition going to further his cause, and now that seems to have become my third unpaid job.
I have a full time job of looking for work, a full time job of endometriosis awareness blogging, and now a part time job of monitoring signatures for an online petition (we’re already up to 316 signatures in just two days!)

Noting the fact that I drank alcohol on Sunday is important because…

On Monday night, I was preparing to go out dancing again. As I leaned forward in a chair to tie my boots, it felt like my entire pelvic region was frozen in place – it simply didn’t want to move with the rest of my body. The pain was sharp, stabby, and made me cry out. The pain didn’t dissipate like it sometimes does after a wrong move like that. The pain just continued, like waves fanning out after something initially hits the water. I popped half of a Tylenol 3 and went out dancing anyway, because I’m stubborn like that.

Movement and exercise did not help.

I am here to tell all doctors, friends and family members, that telling anyone with endometriosis that you’ve heard that exercise helps – IT’S ALL LIES.
So shut the hell up!

The pain was pretty unbearable at times, but I still tried dancing when I could. I rarely lasted an entire song, because I was so fatigued and/or in pain. I took another half Tylenol 3 on the way home from the club.
Late Monday night, the hubby and I were at it again. I was drugged on Tylenol 3 so I thought I was feeling better, right? HAH. The fun didn’t last long. The pain was razor sharp and I started spotting.

I woke up Tuesday and POOF! The pain was gone.

I had yet another job interview on Tuesday, and while at the interview, the pain returned. Go me! :(
I was handling a 6-month-old baby. He’s not heavy – he’s kinda small for his age. So lifting and carrying a baby can’t possibly be what set off the pain, could it? I have no idea.
The pain continued on and off for the rest of the day.

I accomplished putting away some laundry and catching up on endo awareness blogging, but found it hard to wind down at the end of the night. I’m sick of having pelvic pain when I’m not even on my period. I’m bitter. I’m angry. So in that, I become weak and I cave into coping mechanisms. Like drinking. I had a glass and a half of wine last night before bed to chill the hell out. It worked – I was able to get in some leisure reading (oh it’s never JUST leisure with me, I ended up taking notes for later research – the books I was enjoying had to deal with stuff to see in the UK).

Woke up today, and so far, I’m feeling fine.

Today I plan to hang out with a friend in SF whom I’ve not seen in awhile. We’re supposed to go thrift store shopping. Let’s see how well my body holds up.

So to summarise, let’s put it all in perspective, my month so far:

march2009

The questions…

I’m already so sick and tired of people asking me if I’ve considered getting a hysterectomy or a laparoscopy to “cure” the endometriosis.

I’m tired of explaining that to say I have endo means I’ve had the laparoscopy to diagnose it. I’m tired of having to explain that I have endo on the bladder, so a hysto would be useless. I’m so tired of explaining further that endo grows back if left on other organs even after a hysto. I’m tired of having to explain that I react badly to hormonal treatments and that a hysto would mean I’d have to be on HRT for the rest of my life. I’m so tired of having to relay the story of how I became suicidal on hormones, of how I’ve gone through this twice in my life, of how I’m not willing to put myself in that danger again just to prove to disbelievers and doctors that hormonal treatments are NOT the answer for me. I’m tired of having to explain what tradeoffs and side effects mean.

Lately, I’m getting tired of having to explain the difference in the type of laparoscopy a woman undergoes – that is to say, that some doctors prefer electrocoagulation type laparoscopy and some doctors prefer excision type laparoscopy. Since I just found all this out myself, I haven’t yet blogged about it on the main Living With Endometriosis website.
But I’m already burnt out. I’m already tired of explaining how so many women have no idea what to ask for in diagnostic surgery, and that they (myself included) think a laparoscopy is a laparoscopy, and that the doctor WILL remove whatever endometriosis is found at time of laparoscopy. This is all false, from what I’ve found by personal experience and have read on the endo forums and have read from surgeons’ websites.

I’m getting these questions once a month, sometimes once every few days. At last count I was asked about hysterectomy alone on March 9th, March 14th, and March 16th.

I’m asked by well-meaning people, often times it’s people who have not found my blog, my facebook page or any of that. And these people have never read up on endometriosis – why would they if they don’t have it?
So of course it’s a logical question to them. I need to keep remembering to answer the questions for the millionth time with the same even look on my face as I would have answered the first time. I need to remember not to launch into a tirade about “what if you were asking a person who DID want to have children? How do you think that would make them feel?” Because I already know the answer would be, “well you could always adopt…”

How do I, a person who does not want to have children, convey to someone purporting hysterectomy and adoption to just any woman with endometriosis, convey that for those women who DO want to have children but who also suffer with endometriosis – it’s not an option to get the hysterectomy, because they want to bear their own flesh and blood, their own genes…they want to go through the pregnancy experience. How do I get it across to someone that to deny a woman the right to this when she’s not terminally ill is like forced sterilisation and punishment – how do you convey that to someone who just doesn’t get it?

You might be asking right about now, “why is that any of your responsibility, since you don’t want children at all?”

It’s the point of the matter. I need to be out there educating people about endometriosis. It doesn’t matter whether or not I want children. To make a blanket statement that one should “try hysterectomy” to “cure” the endo is completely out of place, and people need to know why it’s not cool to suggest such a thing.

I also have to continue to not be put off when I lose peoples’ interest immediately upon my reply. I know that people lose interest the moment they feel their suggestion won’t be met with, “oh wow, gee thanks! Sure! I’ll give that a go!”

Though sometimes I wonder if I should just say that.

The problem is, they’ll keep on talking ignorance and well, I’ll just get upset.

People say I shouldn’t let endo be my life. Even people who have experienced endo and who found relief from it have said this to me. “Don’t let the disease become your life.”

Well I got news for ya. It IS my life. I was born with it. It’s a stated fact as of January, 2009. I didn’t catch it. I didn’t come down with it. I’ve always had it. I always will. Even excising the hell out of it – it grows back. There is no cure. There is pain management. Gaining relief from symptoms through surgery and pain management is not curing the problem. Endometriosis is incurable. I hope for the day when a cure is found, but until then, I for one am acknowledging the fact that I have an incurable illness, and I’m taking steps to find what works best for me on the path of pain management.

This past week, and looking forward

George arrived on Sunday, March 8 at 6:48pm. I’d been cleaning the house all afternoon in preparation for george, and documenting it for YouTube.

I’d been documenting different parts of the video all day as ideas and the script came to me, and getting excited as to how all the parts would fit together at time of edit. This was the first video I was creating that would have a soundtrack and voice over parts, and my confidence level was high – I would figure out how to put it all together in iMovie.

I was in the bedroom, photographing the stuff I would use to entertain myself with while bedridden, when suddenly my face and ears flushed. I felt stingingly hot and winded. I went to the bathroom and there was george – a day early. There was bright spotting at first, and the pelvic cramping returned. I immediately popped 600mg ibuprofen, dropped everything I was doing around the house, and zoomed off to the store to finish grocery shopping.

By the time I returned home an hour later, the pelvic pain was at 6.5 on the Mankoski Pain Scale. I can’t recall but I think I took Tylenol 3 before bed that night.

On Monday, I went from bright spotting to dark brown spotting, and then it turned bright red by evening time. I note this because all through 2008, I had dark brown coffee ground type material on my first two to three days of menses before the heavy bright red flow set in. And then it was November 7, 2008 when I was diagnosed with a 4cm ovarian cyst, which left me very ill throughout the month of November. I went on a detox diet for liver and kidneys that month, and by the end of November, the cyst had shrunk to 1.6cm.
I’ve had dark brown spotting on and off since November. I’ve only had one month so far that menses started off bright red and stayed that way throughout.
A healthy menstrual cycle is supposed to be nice and bright from day one of menstruation. The dark stuff means something not right is going on inside, such as a cyst. So I keep track of the colouration every month, now.

Going back further in time a bit – after my last day working over in Daly City, on Friday, March 6, I went to a health food store I always frequented when I used to live in that area ten years ago. I picked up some liquid iron supplement, and also purchased iron supplement pills. I spoke at length with the dietician running the register, and he told me that for my condition, my doctor would probably put me on 1,800mg “of the harsh stuff”, meaning the really constipating iron tabs. He sold me stuff that’s supposed to be much more gentle on the stomach and intestines. I’ve been taking the iron since Saturday, March 7th: 100mg per day of the capsules and 4tbsp (20ml) per day of the liquid stuff.
That is to say, I’ve been taking three times the recommended dosage of the capsules, and two times the recommended dosage of the liquid, because I lose so much blood every month, and because a year ago last April, when I was in the emergency room, I was told I may need a blood transfusion with all the blood I’d lost (I declined treatment, I just wanted to go home cuz I’d had a horrible hospital experience).

Tuesday is when the cycle got very heavy and painful. That day was the Full Moon. My pain level was at a 7-8 all day on the pain scale. I went through a lot of Tylenol 3 that day. So much in fact that I’d wager to say I overdosed a bit, because by evening time I had mild hallucinations and found it difficult to breathe. Despite having taken so much Tylenol 3, I was highly productive on Tuesday. Being that high allowed me to dissociate from the pain and work on my YouTube video quite a bit.

On Wednesday, I woke from a medication-induced nightmare which left me on edge for much of the morning because it involved friends disowning me. The pain and bleeding was moderately heavy, but it fluctuated all day. I ranged from a 4 to a 7.5 on the pain scale for much of the day, but despite that, I was very tired and listless all day. I refused pain medication for much of the day because I didn’t like how much I’d taken the day before. It wasn’t until around 9:30pm that I resumed taking Tylenol 3, because the pain and bleeding ramped up again. I went to bed feeling 8 on the pain scale.

Thursday is when I had my Terrible, Horrible, No Good, Very Bad Day.
First off, I woke up from another medication-induced nightmare in which tornadoes, my father, my husband and some friends were involved.
But I fully expected to feel better after having two heavy pain and bleedy days. This was not the case. If you can believe it, the bleeding was even heavier than the previous two days. I was soaking a pad an hour, I was dizzy, off balance, disoriented. I took my pain meds and considered whether I should go to hospital emergency. Every time I stood up or adjusted my position, I soaked a pad.
I had just stood up and had picked up my bottle of orange juice, when the lid popped off and the bottle fell from my hands, splashing all over the place. It wasn’t even 10:30am yet. I wrote about it after cleaning everything up, but my bad day didn’t end, there. After cleaning up the mess, my pain got considerably worse of course, what with all the stooping, bending and mopping I had done. I took my rice heating pads to the kitchen to heat them up in the microwave, and shrieked.

Ants!

We’ve been having trouble with ants for the past few weeks, and have tried several remedies. The ants always find a new way into the house. In the two and a half years we’ve lived here, we’d never had ant invasions until this year. Because of the recurring ant invasions, I’ve come to scrutinize any room I enter before going about my business in that room. This means that I had just been in the kitchen less than an hour prior to my re-entry, and there were no ants. And yet here they were now, a full busy highway of them. They had found my cats’ water dish but surprisingly not their kibble. They were having an all out pool party in the water bowl. Miscellaneous ants crawled about the kitchen, checked out the liquor shelf, and cruised alongside the bottom of the refrigerator. The source of their entry was through an opening in the cabinets below the kitchen counter. This is the area – that entire back wall of the kitchen – in which the ants have been trying to come in through various sources for weeks, now. They’ve even tried coming in through light switches.

Upon entering the kitchen and seeing this, I put down my heating pads and sobbed. I had to clean up this mess NOW, or else I’d go mad, and the ants would be in the cat food and in the fridge within minutes.

Good thing I’d already popped a second Tylenol 3.

I set to work with the ‘Bugs R Done’ orange spray. After coating the kitchen in that stuff, I opened windows to air out the house, and mopped up ant carcasses. To the latest entry point, I applied ‘Ant Eater’ brand anticide, which contains diatomaceous earth and clove oil. I then stripped down and took a nice hot shower. While showering, several ants streamed out of the towel rack in the shower and began running up and down the shower wall.
I sobbed and sobbed. Depression set in full force at this point.

My husband came home early from work, bringing peppermint and cinnamon oils in tow. He moved the fridge out, cleaned up under it, and we applied soaked cotton full of the oils to various potential ant entry points around the kitchen.

I went to bed early last night – around 9:30pm – as the bleeding tapered off. I laid in bed first listening to progressive relaxation tapes, then reading The Witching Hour – a book I first fell in love with back in 1995. I had three heating pads on various parts of my body. I finally was able to get to sleep around midnight.

We’ve not had any further ants and hopefully it’ll stay that way.

Today I am feeling better. I’m back to spotting again. I have mild to moderate low back pain. The problem today is that around 9am this morning I had black, bloody stools. This is important to note in relation to my iron supplement discussion above, because it is a sign of iron toxicity. Insofar as symptoms go, I also have metallic taste in my mouth, and a headache. So I’ll be laying off the iron supplements altogether until I see my doctor. I have an appointment today at 2:45pm.

Tomorrow, I’ll be up in Calistoga for an all day spa event for a bride-to-be. I’m a bridesmaid in her wedding next month, and so we are treating ourselves and the bride to massages, swimming, relaxing, and dinner. We’ll cap off the night with a girly slumber party and then come back home on Sunday.

This Monday, it’s the 16-year anniversary of a local nightclub, and so my husband and I will be heading out to that.

Coming up this Tuesday, I have an appointment with Social Security Disability Insurance, which will likely be a waste of my time. I set up the appointment yesterday in the throes of my depression, because I am feeling unemployable again due to the fact that I have just missed another week of potential work, and I can’t shake it from my head that the last job might have continued had I not been out sick for nearly a full week every month, and the daycare agency never called me back when I asked to be reinstated (that’s the same agency that told me “I knew it! Every time I need you you are not available!” in August, 2008, because they seemed to only call me on a monthly basis, and when I was bedridden).

I talked to state disability yesterday. They told me that per their rules, they can only pay out a maximum of 55% of one’s paycheck, which means one must be inable to work for more than 14 days out of each month. Because I can work 23-26 days out of each month, I do not qualify as disabled per their requirements. So although I am potentially unemployable due to my health conditions, I fall through the cracks for state assistance. I was referred by state to federal. I know that will be a joke, too, but at least they’ll take time to interview me rather than just deny me outright.

This Tuesday, I also have an interview for a nanny position. I know I will ace the interview because I am confident in my skills and educational background. But I am not confident I will get the job once they find out about my health condition. I go back and forth on the issue of whether or not to divulge my health condition.
We’ll see how it goes.

Next Saturday, I’ve got an appointment to get my hair coloured. I’ve not done anything colour-wise with my hair since the wedding five months ago. I’ve been letting all the colour and length grow out so I can get the copper and red tones I originally wanted before that one hairstylist screwed up my hair just weeks before our wedding last year. The woman I’ll be seeing next Saturday is the miracle worker who fixed what the other hairdresser had done to me.

Crisis

Just spilled entire 13oz container of orange juice all over me, my computer chair and the coat on the back of my chair, and the floor. This, right after I filled the toilet bowl with blood. Very shakey. Very weak. Much pain. One Tylenol 3 did not do the trick. Took a second one immediately after juice accident so I could mop it up cuz I’m here all alone. My body overheated while mopping up.

Today is the heaviest day – it started late last night. Must lay down.

Pre-george update

George is due tomorrow. I’m currently babysitting. When I get home, I’m gonna need to run around the house prepping as though I’m going on vacation. I’ll need to get all my comfy clothes out, make sure all my supplements, medication, and food is all in order, and clean so that the house is nice during my downtime.


4pm Edit: I’m super tired. I need to get the house prepped for my downtime, though. I don’t have enough energy to do laundry. Doesn’t matter – I expect to be in pajamas for the next few days, anyway.

Hmmm. This whole prepping for downtime would be a great video blogging topic. Off I go!


6:48pm Edit George just arrived. Dammit. *sigh*

NO Pad Thai with shrimp!!!

My husband and I were talking about what to eat for dinner, and I said I was craving Pad Thai. Then I thought for a second… didn’t I get major cramps last time I ate Pad Thai with shrimp?

Why yes. Yes I did.
Noted on January 20, 2009 and also noted on September 16, 2007.

I’m super glad that I now have everything documented on one searchable server.

I’ll be avoiding Pad Thai altogether tonight just to be safe, cuz george is due by Monday, and I’ve already had moderate pelvic pain extending down my legs to my knees all day today as it is. Although, I ate forbidden foods this morning, too — scrambled eggs and bacon.

The PMS cravings lead me to hurt myself. Why does the body do that to itself!?

Doing okay

Today at work I only got mild pelvic pain and intermittent sharp pains on the right lower quadrant. I’ve also been getting pain every so often which shoots from my pelvic region to my arse again. My energy level however has been good today. I got home from work and did two loads of laundry and made dinner for four – for the purpose of leftovers. I’m using the thai stir fry recipe from the Endometriosis Diet ebook I bought.

Tomorrow night, I’ll make cornish hen. Hopefully I’ll have enough food to last through the weekend and into next week.

With the pains I listed above, those aren’t actually the ones that are really bothering me today. My upper back and knees are killing me. To top it off, I torqued my knee pretty good when I got home from work – just by turning to the side to get out of my chair after checking mail real quick. The upper back – I dunno – from lifting the baby or sitting hunched over on the couch typing on a laptop while the baby naps, probably.

It’s nearly time for bed – gotta fetch the laundry from the dryer, shower and get ready for tomorrow. Only four more days left with this family before I’m on to a new gig – I’ve been sending out resumes and advertising myself like a madwoman. I even called the agency and had them reactivate me. I really hope a new nanny job comes along in the next two to three weeks. Babysitting for a couple hours here and there is not going to tide me over.

Feeling better

Today I am feeling better.

Saturday morning, I had a revelation – getting pain two weeks before menses is due IS actually normal for me! It’s how it was for me all those years before I had surgery.

I noted it in May, 2006 and in July, 2006, a year before my surgery.

*big sigh*

So I had two good years, if you can call them good. I never experienced complete pain relief, but the surgery did at least some good: I did gain a week and a half of my life back every month for two years.

After five days of being in moderate pelvic pain, culminating with me taking a total of 1,800mg of ibuprofen on Saturday throughout the day, and capping it off with a Tylenol 3 and a heating pad….

Today I woke up in no pain and stayed that way all day.

And get this – last night I ate like complete crap. I ate gluten-free cookies, I ate Cheetos (first time in many months), I ate chocolate pudding… all that you’d think I’d be in screaming pain. But no. I ate this stuff while already being in pain. And then today – no pain. So it doesn’t matter what I do for dietary management. The pain will happen no matter what I do. This doesn’t mean I’m going to embark on a diet of chocolate cookies and cheetos – it just means I won’t be so hard on myself anymore when I don’t stick to a strict diet in some aspects. And of course with the gluten and yeast allergies anyway, I still do have to keep a strict diet.

I’m eight days away from menses. Will I stay pain-free until then? Will I experience debilitating pain on my last week on the job? Today I feel great, tomorrow I have no idea.

On Friday, the on-call GYN said it is normal with endometriosis as bad as mine to get mid-cycle pain that lasts that long, and she was right. I’d forgotten, is all. I used to get it like this before surgery. I had two good years before the shit started growing back again badly.

Time to start researching Dr. Cook, who is local, Dr. Redwine, who’s up in Oregon, and the Center for Endometriosis Care out in Georgia, because I am NOT going to go through just any OB/GYN surgeon ever again.

…annnd my ears just began stinging and feeling hot to the touch, and looking in the mirror I see they are both beet red.
I know from experience that this is a hormonal or immunological thing with me.
I had sushi for dinner with wheat-free soy sauce. However, soy sauce has phytoestrogens and yeast in it. So I’m likely having a reaction. Better my ears than my gut, I always say.
..ugh..now getting a headache and red itchy upper cheeks. :(