Bad Day in Marriage Land

I hate days like this.  Hubs  is in a foul mood.  Nothing I can do about it.  He is angry that my medical care is interfering with his life.  He is also angry that this all could have been avoided.  His response: "you really need to get a new doctor".


Yup, it was another trip into medical stupid land.  Two weeks ago I developed a very small tic-tac shaped clear bump on my big toe.  It appeared to be full of fluid.  It was tiny.  It didn't hurt.  It didn't itch.  I decided to leave it alone and see what happened.  Last week I saw my doc for a routine follow up for my CFS.  Catch up on bloodwork, symptom lists and meds.  I asked him to look at my toe.  The tic-tac had now resolved into three small lumps that had a dark red almost black centers.  He took out his magnifying glasses and declared that they were bugs bites.  More specifically "breakfast, lunch and dinner."  Cute.  He decided to leave them alone since they weren't bothering me.


Over the course of this past week, more clear lumps showed up until a dime sized patch was covered with them.  The entire area was red.  Hubs said the toe was slightly swollen.  My masseuse, who used to be a dermatology nurse, said it looked like an allergic reaction and asked me if I had been in contact with anything weird.  Why, yes.  I had walked through the garage barefoot a few days back but I'm pretty sure the lump was there before I did that.  Timelines really aren't my thing since becoming sick.  I get events out of order all the time and can never figure out how many days pass in between events.  Anyway...


Yesterday, some of the clear lumps filled with pus.  Great.  Think its time to take care of this.  I call the doc and talk to the nurse.  Doc decides that he wants me to go see a dermatologist rather than go back in to see him.  The nurse emails me the contact info late in the day right as I'm going out the door to see my chiropractor.  There is no way I can call during office hours.  I'll have to wait until tomorrow.


Overnight, I discover a second patch in between my toes.  This one is a vicious red and it looks like some of the lumps have burst and bled.  Can't really tell because it is facing away from me and I'm not enough of a contortionist to really get a good look at it.  All I can tell for sure is that there is a dime sized patch of small bumps there as well.  So today I call the dermatologist my doc wants me to go see.  He is booked until October and his colleagues are booked through the end of July.  Well, the way this situation is rapidly deteriorating that isn't an option.  I call my doc's office back and tell the substitute receptionist that I can't get in to see the dermatologist.  She talked to my doc and then got back to me.  The regular office manager will try and set up an appointment for me with a dermatologist on Monday.  However, she has been out since her daughter is getting married and substitute doesn't think she will get to it on Monday but just call back if I don't hear from by the end of the day.


I promptly feel myself descending into medical hell.  I have a rash that is spreading and probably infected and a doc that wants to foist me off on a specialist rather than reassessing the situation and giving me drugs so that this doesn't get worse.  Next week is July 4th which is a HUGE holiday and poof it is on Wednesday.  People are either taking the entire week off or Wednesday, Thursday, Friday off.  I have my IV on Monday and I'm going to VT on Tuesday night for some unknown period of time.  If I go to a specialist I need 1) a facility that is wheelchair accessible (no kidding this is a problem in lots of places) 2) a driver 3) a person to push my wheelchair.  I also have to schedule the visit around the other doc visits I have and preferably in the afternoon so that I'm not a mumbling idiot when I go see them.  Both hubs and kid are now working full time, my regular ride is going to NH for the entire week and I've already tapped my alternate ride for my IV on Monday.  I'm basically f'ed.


After hubs gets home from work, this idea pops into my head.  Lets head up to the walk in clinic.  It is after hours so they can't call my doc.  The regularly treat skin rashes or at least stabilize them so they don't get worse before you can see your regular doc.  They will prob give me drugs to treat this. If it is really bad they have a podiatrist on staff who might be on call (if it comes to that but I doubt it is that serious).


So already grumpy hubs drives me two towns over to the walk in clinic.  The staff is great but the check-in is kind of stupid.  I have to go back and forth between the triage nurse and the check-in desk.  Hubs goes back out into the waiting room first chance he gets.  For some reason he doesn't like waiting with me in doctors offices.  I get triaged, signed in and make my co-pay.  It is about 30 mins between walking in the door and actually seeing a medical professional.  Not too bad.  It is a quiet night.


I finally see a nurse practitioner.  She used to work for my doc many years ago.  She remembers my name and vaguely remembers me.  I look totally different than I used to and I'm in my wheelchair so I'm not too surprised that I didn't look that familiar.  Anyway, she tells me that yes indeed I had an active skin infection and the patch between my toes looks like a fungal infection.  So I get scrips for cream for the fungal infection and antibiotics for the skin infection.  Woohoo!!  Hurdle number one overcome!  No trips to the ER this weekend!


I check out.  We head over to Walgreens at the end of the road to get the scrips filled.  I have never EVER used them for my scrips before.  I use a local mom and pop pharmacy which of course is now closed.  I give hubs the scrips and my Blue Cross card.  I settle into the truck to read my Kindle.  Much later he emerges and asks me for my ExpressScrips card.  Turns out I don't have it on me.  Of course I'm too muddled up in the head to explain the BCBS covers our meds.  I have an unusual plan.  ExpressScrips is for buying pills through the mail not from the pharmacy.  Now he really gets his panties in a bunch; grouses at me for not having my card and stomps back into the pharmacy to cancel the transaction.


As we get back on the road home, I start telling him the details of our health plan and how every time I go to a new pharmacy they try to use the wrong card because they don't get too many BCBS accounts that cover meds.  They never believe me until they call the companies themselves.  So now Mr. Crankpants decides he wants food.  Screw the pharmacy.  So we stop in Longhorn which is on the way home.  It is another half hour wait.  He plays with his phone the whole time.  He is pissed.  We eat in silence.  Only swapping a few words here and there.  He texts his friends more than he talks to me.  Food done, we head home.


As we leave the parking lot, I tell him that I have accounts at CVS as well as at Smith Drug.  We should be able to go to ether place and they should have my records.  He drives towards our house.  He is in lala pissed off land and drives right by the turn that would take us to the pharmacies.  I say "drugs" and point down the road we just missed and he grunts.  He goes the long way round to a different Walgreens.  When we are parked I ask him to look in his wallet since he should have the drug card himself.  He does.  I tell him if there are any problems just pay for the stuff and I can get reimbursed from BCBS after the fact.  Why in hell he didn't just go to CVS down the road is beyond me.


He goes in and it is a long wait.  I'm too messed up to read by this point so I watch some kids in the parking lot hang out.  One of them lights off a bunch of firecrackers and they scatter.  Next thing I know the cops are there.  The manager is outside.  Everyone is grousing about the kids.  Hubs finally emerges and tells me that Walgreens no longer takes BCBS.  WTF!?!  He just had to pay $50 for my meds.  No biggie really.  If it were car parts he wouldn't even blink.  Instead he is even angrier.  He had to pay FIFTY DOLLARS for that!  OMG!  I would have had to pay more than that if I ended up in the ER over the weekend from the infection getting worse.  But no.  He is in full tilt crank mode.


We get to the house and he has to help me inside.  I can no longer walk and I'm doing a very poor job with my gross motor skills.  Not quite headbobbing but damn close.  He leaves me on the bench in the vestibule and disappears into the garage.  Now I need my walker to get around at this point.  I need someone to get it for me since I can't walk.   I'm not even sure where it is in the house.  He doesn't come back in.  I hear the floor jack.  This means he is fixing cars and won't be back into the house.  I'm stuck on the bench.  I have to sit and wait until I'm able to get up and hobble around until I find my walker.


He spends the next several hours outside.  He is ANGRY.  He finally comes in only to discover the pile of stinky dishes he has been avoiding all week so now he has to do dishes.  Something he hates. I think it has become a symbol of my disability.  He gets really really angry when he has to do housework.  So now he is stomping around the kitchen.


This whole thing reminds me of some horrible YouTube vids called Tourette's Guy.  He is this man who has Tourette's Syndrome and anger issues.  He will do something which gets him angry and then he does something stupid because he is angry which usually results in him injuring himself.  During the entire debacle he is swearing his head off (which is the Tourette's).  CJ often reminds me of him.  He gets angry and acts out of anger or because he isn't thinking clearly because he is angry and the whole situation just escalates until he is walking around swearing.  If he just calmed down and thought things through it wouldn't get nearly as bad.


OMG I hate days like this.  There is nothing I can do about them.  I can't fix him.  This is his own crap he needs to deal with.  I have no idea what to do with him so I ignore him.  He finally tells me that he is going to bed because he is getting up early in the morning.  I ask him where he is going and when he is going to be home.  He has set up a little boys getaway for tomorrow without telling me about it.  He is going out first thing in the morning to get his noisy car so that he can put it on his trailer and take it to a car show tomorrow night.  I'm going to be at home all by myself for most of the day.  I remind him that we were supposed to go to the farmer's market tomorrow noontime.  He explodes.  I HATE going there!  IT is the SAME thing every week!  It is SO repetitious!


I just look at him "you are spending all day tomorrow doing car stuff and you can't spend 45mins taking me around the market?  Besides you like what I cook with what I get from there."


Silence.  He is in bed at this point so he just turns out the lights.  I give him a lame kiss and leave him to stew in his own juices.  I wish he enjoyed his time with me.  Instead I just seem to be a huge inconvenience to him.  I'm in the way.  I have to be wheeled around.  I can't do stuff on my own.  I have to be helped.  Makes me wonder about our relationship.  It also makes me glad that I'm dragging him into my next counciling session.


I've done the best I can.  I've got medicine to stop this infection from turning into something serious. I've managed to do this outside of work hours so that no one has to take time off.  I've avoided a potential trip to the ER.


I will probably still go see the dermatologist since this fungal infection seems to be spreading all over my body rather than going away.  My toe isn't the first place it has shown up but it is the first time it turned into a full blown skin infection.  At least going to the dermatologist is no longer a time sensitive thing and it won't matter if I have to wait a couple of weeks.


Hubs on the other hand is on his own.  I don't know how to fix him.  He is broken.  He doesn't/won't appreciate the fact that disaster has been averted.  He is angry that he had to take me to the clinic.  He is angry that he had to spend money on meds.  He is angry that he has to take me to the market tomorrow.   And to think two days ago he was a happy camper and was actually kind and understanding and willing to help me out....  I just don't get the mood swings.  And you know what the kicker is to this whole thing.  He will NOT ever apologize to me about it.  Don't ya just love marriage!?!

Go Mum!!

Now for something completely different....

My Mum is going to be 80 years old this year.  She is still skating.  In fact she just particiated in the Adult Skate Week in Lake Placid.  I used to attend this with her before I got sick.  This is a video of the rehearsal for the group number that is performed in the show at the end of skate week.  She is the short lady with silver hair.  I am SO proud of her!!  I wish I could have seen her in person but this is almost as good as being there.  Her ice dance coach is the one who choreographed the number and makes a brief appearance in the video himself.  Go Mum!!

A Confession

I have been driving hubs nutty.  I'm obsessed with food.  Thing is I like food.  Rather, I LOVE food.  I like the way it tastes.  I like the way it looks.   I like the smells.  I've been cooking since I was seven when I helped my Mum bake a pie and I got to make the crust.  However, normally, my thoughts only tend to revolve around food when I'm a) making a shopping list, b) planning out the menus for the week c) cooking or d) I'm hungry.

Trouble is, lately, I've noticed that I've gotten way worse.  I think about food almost ALL of the time.  I'm reading food blogs.  Following real foodies on Facebook.  I'm borrowing cookbooks from the library.  I'm reading about nutrition and nutrition studies.  I'm reading about the guts and CFS.  Every once in a while I step back and wonder why.  Why this obsession?

I haven't been this bad over the entire course of my illness but the illness didn't start off well either.  One of the main first symptoms of my CFS was almost constant nausea, food was immediately a problem.  I couldn't eat anything!  I was rapidly dropping weight.  My acupuncturist put me on congee (double boiled white rice) just to get food into me while he riddled me with needles to get my digestion working again.  Then he had me adding boiled meat and boiled vegetables.  Then a little fermented soy.  Then I moved onto chicken broth based soups.  Slowly I built up a repertoire of food that I could eat without wanting to throw up afterwards.  It was a slow process but it worked.

Once I got past most of the worst digestive issues, I ate a very clean diet.  Organic fruits, vegetables, meats and some tofu.  Gluten free breads, English muffins and crackers (GF stuff doesn't come organic unless made at home from scratch- like that was going to happen with CFS...).  I had made a private bargain with myself; if I ate a really clean diet I would be well by the fall and would be able to go back to work.  Of course, I still didn't know what I had.  I kept thinking this would just go away.  That I could fix it.  (If I'm being really honest with myself, I still think I can fix this.)

Once I hit the six month mark, the neuro symptoms hit (this is the normal progression of the disease BTW which I didn't know at the time), I got a diagnosis and I took a turn for the worse so I threw caution to the wind and started eating junk food.  I stuck with the GF because I'm not suicidal but I was purchasing muffins, cakes and brownies.  I ate chocolate and ice cream.  Desserts every night.  I just didn't care.  Slowly I noticed that I felt like crap after eating such things and I slowly but surely dropped them back out of my diet.

By spring when I did the Elimination Diet (The Diet from Hell), I was a mess.  I was so sick.  The diet made me bedbound and it took several months to recover from it.

Then fall came along and I found Paleo.  I figured what the heck.  It can't hurt any worse than the Elimination Diet.  Within a month I dropped several meds.  The nausea, terrible heartburn and intestinal pain all went away.  My period got back to normal, my mood lightened, I had more energy. I was a convert.  That is when the obsession started.  I made another secret pact with myself; try this diet for six months and you'll be cured.  After all, Dr. Wahls cured her MS in six months why not CFS?

I'm ten months into the diet and, no, I'm not cured.  But I'm still obsessed.  I did have a period of depression when a three month relapse happened.  I went from being able to walk around small stores with my walker to being bedbound, which is enough to put anyone out of sorts.

But the food obsession is still there.  I'm still reading blogs, papers, studies, articles.  I'm thinking about food all the time.  I keep thinking "if I only I had enough energy I would be making yogurt or ferments or kefir or sourdough bread or fill in the blank and then I would be able to heal faster".  I have wondered a few times if this was unhealthy mentally.  I've told myself a few times that I need to get a different hobby.  Other days I just say that I'm obsessed because I'm trying to heal myself.

Today, however, today I had an epiphany.  I was sitting out on the deck obsessing over a food war started by a real food blogger who decided to publish a post bashing Paleo.  I was pissed.  I stopped following her blog and un-liked her on Facebook.  I spent hours reading through the comments section on her blog and the rebuttal blogs.  Then I asked myself, why?  Why am I wasting so much energy over this?  Why am I obsessing over this?  Then it hit me...

Food is the ONLY thing I can control in my life right now.  I have NO control over: work, housework, finances, reading, health, friends, family, exercise, weather, etc.  NONE!  Food is it.

So I have a double edged sword in my hand: I'm trying to cure myself by eating the correct foods and food is the only thing I can control in my life.

I'm wondering if this will end well....

Sick Humor

http://www.gocomics.com/ziggy/2012/06/25

Sick Humor

Yup, some days it feels just like this....

http://lscpc.myshopify.com/products/im-high-maintenance-t-shirt

Sunscreen

Still haven't needed the stuff myself.  But here are some great article on sunscreens.

How to make some yourself:
http://coconutoilinformation.com/coconut-oil-homemade-sunscreen-recipe/#.T96HDRevLTo

Ranking of natural sunscreens:
http://www.kitchenstewardship.com/2010/07/20/natural-sunscreen-review-do-mineral-based-sunblocks-work-2/#sunscreen-reviews

Don't just take my word for it (diet helps with sun exposure).  There is a great list of links for more info at the end of her blog:
http://homewithpurpose.blogspot.com/2012/06/nutrient-dense-diets-and-sun-exposure.html

From Starvation to Gluttony

I was born in England.  My dad was a blue collar worker.  Back in the 60's this meant that he wasn't upwardly mobile as far as class and work went.  He even took elocution lessons to loose his working class accent so that he might, MIGHT, get promoted in to a management position.  Hence he wasn't paid much.  Blue collar work pays poorly in the UK.  We were also house poor and barely making the monthly payments and taxes on the small house we were living in.

So my first memories around food are not having enough of it.  I remember my Mum putting out a nice dinner for me and my sister and when I was finished I was still hungry only to discover that all the food was gone.  There were no seconds.  And this happened a lot.  I remember eating jam sandwiches to fill in the holes in my tummy.

When I was older I found out that my Dad insisted on eating steak every night even though we couldn't afford it so my Mum would often skip eating the meat or the dinner so that us kids could eat.  Beans and eggs on toast was a fairly common dinner when I was growing up.  As well as boiled ground beef with peas and carrots served over pasta.  But mostly I ate steak and potatoes.  Just not a lot of it.  I was tiny and skinny.

After we moved to this country we had money for a while.  Dad had gotten a really cool job and we were relatively rich.  Rolling in to the US in the 70's meant Wonder Bread, Sunbeam Bread, Hostess Cupcakes, Twinkies and Dunkin' Donuts.  We were in food nirvana and I almost immediately got chubby.  I had lots to eat and, what seemed to a seven year old, an unlimited supply of sugar.  Mum tried her best to keep our desserts to a reasonable number.  But daily candy/chocolate, lunch dessert and dinner dessert were daily occurrences with an occasional box of donuts that would be consumed in a few hours by three of us.  Of course back then this was considered normal.

By the time I got to high school we were poor again.  But now I could work.  As soon as I could, I started paying for groceries so that we had food in the fridge.  By this point I had a very bad body image.  Looking at my pictures now I wasn't that overweight but at that time, when the girls either had eating disorders or were on diet pills, I felt huge.

My mum had done a wonderful thing and taught me how to cook.  She made sure we had lots of fruit and veg available and fresh meat.  She tried very hard to limit our sweets.  She also let me loose in the kitchen at a young age so that I could experiment on my own.  To this day I learn to cook via cookbooks.

The 80s rolled around and fat was bad.  I watched as fat got swapped out for sugars and artificial sweeteners in processed foods.  100 calorie packs were invented.  I was poor again since I moved out and wanted to make it on my own.  This meant pancakes, oatmeal and lots of eggs.  Chicken was the only meat I could afford.  My weight had settled down to a nice chubby 225lbs on a 5'2" frame.

In the 90s, still overweight, I caved and went on my first official diet.  It was based on science so I had some confidence in it: high carb, low fat.  I learned a different way to cook.  I lost a lot of weight. I think I got down to 150lbs.  I was within my goal weight of 130lbs.  Didn't last long because I got pregnant soon after.  I ate healthy during my pregnancy which went well.  The birth was a bit of a cockup but that is a story for another day.  Lets just say I ended up with a week long stay in the hospital when they originally wanted to toss me out the next day.  I was five pounds lighter after giving birth than before I got pregnant.  Woohoo!!

Then the postpartum depression set in and I could no longer get to the gym for my weight lifting and aerobics sessions.  Heck I was spending 3hrs at the gym several days a week and that just isn't sustainable with a newborn and work and husband.  I gained all my weight back.

It has stayed put, hovering around 220lbs, for decades.  Didn't matter what I did.  How much I swam/stairmastered/treadmilled/weightlifted. What I ate.  I was stuck at 220lbs.

Now I'm at 260lbs.  Yup.  That is a big number.  But I'm also stuck on the couch.

It is a scary number.  However, like I said last time, I have to be patient.  I'm using diet to heal.  It is working all be it slowly.  I can work on the number later.  I have to get my body working right first.

But given my sordid history with food, is it any wonder that I'm obsessed with it!?!

Plus I'm bored off my nut and it is one of the few things I can tinker with and explore as a chronic chick.