Dude, The Drain is a Drag

My daughter is currently learning about the digestive system, which a pretty great work of ironic timing.  So my process has helped her learn about the esophagus and stomach in ways that the typical child does not.  Real life is pretty much awesome like that.

As I mentioned  before, I woke up from surgery with an unexpected new friend, the drain.  It completely freaked me out, hanging there at the end of a tube like a transparent, blood-filled hand grenade.   Eeewwwwww. And I’m not one with a weak stomach.
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I admit, one of the reasons I wasn’t in a hurry to get my first shower afterward was completely based on the fact that it would require changing the bandage around the outlet, which is a nice word for the open hole in my side.   I had some leaking from the wound and actually went BACK to the hospital and insisted that the poor tech change the bandage.  Once I saw him do it, I realized it wasn’t that big of a deal.  I still avoided it and got away with only having to change it at home twice. Quite proud of that.

After the first few days with the drain, and as I started recovering from the double pneumonia, the timing of all of this started to sink in and I found myself very aware of how minimal my suffering really is. Oh,  it was rough.  I haven’t even mentioned the issue of hemmies.  The fact that a no fiber liquid diet in combination with a week and a half of sitting, even to sleep, can wreak havoc on your rear. For me, to the point of strangulation and rupture.  See?  Isn’t it a good thing that I keep this an anonymous blog so I can shamelessly speak of such things?
Not that my suffering was minimal, but that I am a very-much-in-love-with-God  kinda Catholic and am currently walking with others through the serious season of Lent and now the Holy Week.  So for me, suffering is a learning experience and a humbling one at the moment., being on a liquid diet for weeks, unable to tolerate any food and really not caring about it!  The drain that drew literal blood and water from a wound in my side.  I was mesmerized and intrigued at the way it separated out in the tubing, a real physical change in a human body. Christ was oh, so… human. So feeling.
My chest has felt for days like I was booted in the ribs  by a gang of bikers with steel toes. Some times I look at them amazed that I don’t see bruises there (those are all over my belly, which looks like I was stabbed 7 times in a gang fight).  But it’s nothing, NOTHING.  It draws me back to amazement at the love and suffering He endured.
Easter is in 2 days!! Chocolate, candy, cakes, feasting… The only time of year that I can get a WHOLE bag of black jelly beans!!   And I get protein shakes, and pureed soups. And I don’t care.  It’s nothing.  In the past it has meant so much.

As things are getting better, and they really are,  I find myself protective of my Lenten experience that has been like no other I have ever had.  Grateful for the suffering that I’ve been through. I find myself wondering what next year will be like. I expect that I will be small, and comfortable in my own body.  I’ll be moving and have energy.  I’ll be with my family. I will never do it like this again.  And you would think I would be relieved about that. I’m not sure I am.
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8 Days Into the Unknown

P1100277While preparing for surgery, someone told me that for them it was  “like going to sleep in the USA and waking up in Siberia.”  That has really stuck with me.  What would it be like?   I considered the wasteland of not being able to eat for a long period of time (3 months till I can have fresh fruit!).  The boredom and frustration of not being able to munch on something.  The training of eating tiny bites, chewing them to smithereens and only swallowing if they were liquefied.  I was ready for all of that.

But right now I’m only 8 days out and I can tell you what I was NOT ready for.   Surgery took longer and was “more complicated” than expected.  I came to with a drain in my side that completely freaked me out.  I don’t like it.   I came out hardly able to breath and within 48 hours was back in the ER, having developed double pneumonia from being intubated.  I slept for a week taking every antinausea med they could give me, to keep me from coughing and heaving/puking so that I wouldn’t rip open the work on my esophagus and stomach.  The pain has been way beyond c-section, appendix or gall bladder surgery.

Anyone who calls this an easy way out can kiss my rump roast.  This is HARD.

But now I’m feeling human again. The coughing is over.  Tomorrow is my last day of antibiotics, thank goodness!  And today I was able to stomach some soup for the first time.    I have gone 8 days without an attack/episode from the para-esophageal hernia. Oh, that’s because it’s GONE!!!!!

The drain comes out on Thursday and I start moving forward.  They say the first 3 months are hard.  I feel so good about getting past the first week that I’m looking forward to that kind of hard!

And It’s On.

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I got the call Thursday that I’m approved and ready for surgery.   Yesterday I spent hours doing pre-op paperwork, blood work and a training class.   I’m ready.

The pre-op diet is really rough on my hernia because liquid comes up so easily.  I drink those protein shakes and end up coughing up bubbles from the powder every time. It’s gross.

But I can handle 9 more days of it.

It’s funny. I’m not really all that excited about buying a new wardrobe, as I’ve said.  Yet suddenly the idea of new bras and underwear sounds like heaven!!!  And bras that fit (or more accurately, boobs that fit in them)  (((happy dance)))

So, here we go.

A Love Letter to Normals- From Fibromyalgia

This is a letter written by someone recently diagnosed.  It is a beautifully open letter that shows the struggle emotionally with accepting this as “real” that I have been through myself.  Her description of the struggles is so raw and real to me.   I live her experience, too.

I wanted to share this because it was so powerful for me to see someone else’s response and experience with their friends and family. Our experience and emotions are different. I am so blessed with the level of support that I have and find myself able to offer grace to those who don’t get it it. It’s not my grace and forgiveness because I know that I’m not that strong.  But it’s there when I’m judged and misunderstood and it keeps me strong to let other’s responses go. It’s not my job to convince them that this is real.

Anyway, please read.

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LOVE LETTER TO NORMALS

by Claudia M.
Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn’t help over half the people who tried them. No matter how happy the people in the pictures look, there’s still no miracle drug available.

There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational. I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

Holding Pattern- Pre-Op Diet is a Go

While waiting for insurance to approve my surgery,  I have started the pre-op diet. This diet is meant to be for 2-3 weeks before surgery to shrink the liver and the fat around the stomach…nice.

I have 3 protein shakes a day and 2 meals of lean meat/veggies a day.    The protein shakes are to total 60-80 g of protein.   I started on Monday and am doing well with it, other than not particularly liking the powder taste. I’m hoping to try another.

The weather has been rough this week and thrown my body into a bit of a fibro-fit.  Aches and pains where you aren’t used to feeling anything.  Sleepy, cloudy head, migraines… Ugh.

Anyway, this waiting is rough. They said the answer is typically mailed within 7-10 business days (we submitted last Thursday) but they legally have up to 30 days to respond.  With spring break coming up for kids and other large family events and responsibilities next month, it’s feeling really close.   I just like to plan and right now I can’t.

Next week I see my neurologist and discuss lowering meds after weight loss, which I am excited about. I also start physical therapy for my arthritis to get that under control and start regular exercise again.
Within the next paycheck or two we should be able to join the YMCA. I can go back to water aerobics with my friends of the senior age group.  Lovely old ladies. I’m sure they will have lots to say about my size, just like any grandmother who points out the obvious elephant-ness of you in the room.   Not looking forward to that… in a swimsuit.   But it’s worth it, because I am certainly looking forward to the water!!

So much good is coming.  Right now it’s like everything is stopped, frozen like the credit card in a cup of water in the freezer (thanks for that Dave Ramsey)… so much potential but must be the right timing.   Timing is not my strong suit.

Moove Forward

hookIt’s done. All paperwork is submitted for surgery and now I’m settling into the idea.  I struggled with the idea of weight loss surgery for a year and a half. I’ve researched, spoken with several people who have had the surgery, and written up countless pros and cons.  I know that it’s a no-brainer, considering the hernia and that NOT having the size of my stomach reduced increases my chances of re-herniation.  There are lots of reasons.
But I do want to be clear. I am not trying to justify this surgery as  a complete side dish.  I realize that my focus has been on relieving the painful attacks from the hernia and it may sound like I don’t really care about the weight loss. I do.  I am absolutely prepared to take this huge step of changing my life to be healthier. And I am very aware that

  1. It is voluntary
  2. It is major abdominal surgery
  3. I am choosing to have it

It occurred to me the other day that I should point that out. Without it being said, I worry that it looks like I am trying to justify it in a way to maybe look “different” or better than others who chose to have weight loss surgery.  I admit that I still don’t think I would be doing it without the obvious need for the hernia repair anyway.   But ultimately, I AM choosing it and I am excited about it.

Hmmm… excited. About surgery. ME.  I’m the one who fought her arse off 4 times to avoid c-sections, which included researching, firing doctors seeing chiropractors and homebirth midwives, and knowing more about the statistics and implications of each intervention than 80% of women who walk into the hospital. I am also a woman who  walked out of the hospital AMA(Against Medical Advice)  after a severe gall bladder attack and being told I needed it out quickly, to research and consider before undergoing gall bladder removal.   I have a long history of avoiding unnecessary surgery.  If you know me, you know I’ve done my homework.  And after all is said and done, I’m choosing this like many other men and women who struggle with obesity.

I’ve been very open about my surgery and sharing with people.  Because I have so many other health issues going on, I worry that the sudden weight loss, and subsequent hair loss and languid skin that I know will accompany it… will just scare the tar out of a lot of people.  And those are the people who have supported me through the last several years of health issues. I don’t want it left to people’s imaginations and gossip.  If I don’t share, it’s going to look like I have cancer or something and my support system of friends and family deserve better.
I’ve been surprised by some of the responses.
“But you aren’t hardly big enough!!”
Ummm,  I actually weigh just under 250lbs at 5’4″.
“Oh, but you carry it so WELL.”
Ok, sure. But I’m still carrying it. My bones are. The bones that already at 25 have fibromyalgia, arthritis, degenerative disks… They’re ready for improvement.
“Oh, you’re going to feel so sexy. You’ll get all new clothes.”
Me? I couldn’t care less about bringing sexy back. My husband loves every inch of me, no matter how many there are.  I’ll leave sexy where it’s at.  And I’ve already been begging hand-me-downs from a few people so I don’t have to buy clothes.  I’m pretty focused on modesty. I mostly wear skirts, I try to hide all cleavage, and never show my knees. Don’t expect me to be strutting much.

I’ve had a few looks of horror and many looks of envy as it looks like an easy way out.  If there is one thing that I know, this is NOT easy.  The people who have had this surgery are strong, and have worked their butts off for success. It’s a quick fix to some extent but only works long term if you work it.  And that is a life long commitment.

The eating plan for the next 2 years is intense. TWO YEARS. And THEN I can consider maintenance.  I can never again have sodas and shouldn’t have alcohol.  I will never guzzle a big bottle of water for refreshment. I will have to take hard core vitamins and supplements for life.    People are going to be uncomfortable and confused as they see me shrink.  There’s going to be  some frustration when I go out with the girls and have 3 bites then sip some water.   I know all of this. And I’m ready for it.

This is going to sound so cheesy, but I’m going to bring out a little Jesus here.  You can think it’s a crock, but just listen for a minute.  (I totally justified my nose ring biblically, too, by the way.)

Have you ever looked at how many verses there are about cutting out/off body parts?
Mark 9:43 If your hand causes you to sin, cut it off. It is better for you to enter life maimed than with two hands to go into hell, where the fire never goes out.  Matthew 5;#0 and 18:8 agree with the amputation.   In Matthew 5:29 he suggests gouging your eye out if it offends  you.   And they all say the same thing… It is better to go throughout life without it…
Think about it.  Living without a hand would SUCK!  So would being blind in one eye.  You would have to relearn everything. You would be limited for the rest of your life.  There are things you just couldn’t ever do again, and people are going to be uncomfortable around you…. And did the Bible just imply that  you should CHOOSE this?
So there you have it.  One of my biggest struggles was being sure that I’m not taking over God’s plan or doing something outside of His will.  Many of us worry about that with our decisions.  All I can say is that my stomach offends me.  It’s taking too much of my life.  And I’m not gonna lie, I’ll take cutting out my stomach over my eye or my hand.  I think those guys had the raw end of this deal!! I am at peace with sacrificing my stomach to gain a healthier life. And I’m excited about the “hook”, the edge that it will give me as a tool to move forward.  Yeah, that hook pun was completely intentional. Go ahead, laugh. ARRRGGG..
So, those are my thoughts tonight as I’m waiting for the caffeine I had earlier to wear off.  It’s now 1:40am and I think I can attempt sleep.   If you read this, I’d love to hear your thoughts.

Goodnight!

 

Cow Pie


What can I say about this week…whirlwind, tornado…  So wonderful, so exhausting… so empowering, so humbling.  And for a laugh I’ll throw in this photo of some horrific blonde holding a cow pie made into a clock.

((shudder))

Monday I met with the Orthopedist who seems really awesome.  I like him a lot. I do NOT like that Xrays show my hip as looking normal and that he thinks the pain is most likely just from FM(Fibromyalgia). He told me that I need to find a rheumatologist. I don’t want to.  Anyway, it’s not like I want to have a hip issue. But something fixable sounds so much nicer than something I just have to deal with. I’m frustrated.  The final say is out until I get the MRI next week which they STILL haven’t called me to schedule. So now I have to find a spare minute to call them.

Tomorrow I meet with my PCP to get basic bloodwork done and release for surgery. Then I’m going to get Allergy tested for the simple fact that I never have been. And I know I have allergies… and my $2500 deductible is paid for the year. I want a clear, clean picture of what I can work on after surgery.  Also getting my chest X-ray and lung testing since I’ve always had weak-sh lungs. Same reason. Get er done, whether I feel like cow poop or not.