It Hurts

This isn't fun for me.
I miss the person that I married.
You are broken.
You are punishing the entire family.
Our marriage is worn out.
Pushing you around in a wheelchair is not my idea of fun.

Don't get me wrong, I'm not always this miserable, but this weekend just takes the cake.  My defenses are down and I just don't have the fight left in me to deflect these missile attacks.  I've been locked up in the house for days and haven't had anyone to talk with.  My kid has even been sick so he is even more morose than his usual teenage boy self.  After six months of these comments it is wearing me down.  I'm getting depressed and crying a lot.  I feel like I'm alone.  It is just me, my illness and my cats.  While I have moments where I feel totally worthless I try to remind myself that I have given up my career for these two.  I spent the last 17 years taking care of my kid and the last 20 taking care of my husband.  I've lost promotions because I couldn't work late or had to leave often to take care of the sick kid.  I didn't get to go back to school to get an advanced degree because I was too busy being wife and mom and full time employee.  In my field you have to put in long hours to get ahead.  40 hours doesn't cut it.  I can't tell you how many times I've been passed over due to the mommy factor.  While this stinks I made peace with it years ago.  I'm happy that I could be a wife and mother.  It was more important to me than being A1 engineer.  I have provided food, income, nurturing and health insurance for my family for 20+ years.  Even though I've been ill for six months, due to the fantastic job I have (still have waiting for me), I got full pay for 6 months, 60% pay for the next two years and all my insurance premiums paid in full.  Even while I'm sick I'm still providing for them.  But apparently this isn't enough.  This isn't good enough.  20 years wasn't enough.  I'm not interesting enough or entertaining enough or provide enough meals or cleaning services.  I'm so jealous when I read of others whose spouses arrange for trips and take them places and spend time with them.  I'm just a lump on a couch that occasionally gets asked if I'm ok.  I'm broken.  I'm alone.  And very very sad..........

Cranky Pants

I have my cranky pants on.  I put them on just before dinner.  As I've mentioned before everything about the dinner ritual can get contentious in my house.  Dinner is almost never a pleasant experience anymore and I dread it daily.  To make a short story long....

I had an excellent morning.  After the neighbor's dog woke me up for the millionth time this year, I spent the morning lounging in my favorite chair reading Craig Ferguson's autobiography American on Purpose.  It is a hoot and I highly recommend it.  That guy can write and make even horrendous stuff funny.  Anyway, so there are me and the cat enjoying our quiet warm house on a blustery rainy morning.  Finally my kid got up around 1pm.  Turns out he is now sick.  He caught it from hubby who had been sick since last Saturday and is just getting over whatever he had.  Since I was feeling pretty chipper, I decided to make my little germ factory drive me to the supermarket.  $300 later we drove home with tons of groceries.  We were both in good spirits at this point but I was dragging.  I left my sick kid to put all the groceries away while I curled up on the couch with another book, Jim Butcher's Grave Peril.  It didn't take me too long to end up closing my eyes for a while.   I think my foul mood started during that rest.  While my body craps out on me like this, my mind often remains very active.   It gets restless and bored while my body has to take time off to recover from whatever abuse I laid on it.  So I was off thinking of food, planning elaborate meals I couldn't possibly cook and generally annoying myself with ideas that were beyond my body's capability.  Because the mind got restless my body followed suit.  Instead of taking the much needed nap I got fidgety but couldn't really do anything about it.  I was on the couch with the regular TV and nothing good was on.  I was stuck.  Too tired to read and nothing to do.  I found myself waiting.  I wanted my husband to come home to keep me company and to talk with me for a while.  I called him to remind him to pick up my new meds from the drug store and got a surly person on the phone instead of the loving attentive hubby that I was craving.  (cue whiny voice) I know he is at work.  I know he is busy with other stuff.  But sometimes I am in an unreasonable mood and this afternoon was one of them.

He was late coming home.   I had an odd feeling that I couldn't start dinner before he got here.  After he arrived I found out why: he had made plans to go out to dinner with the guys tonight.  He offered to skip dinner which is unlike him, which means what he really wanted to do was eat with the guys.  I had just bought all the food for dinner at great energy expense on my part (I just laid on the couch for three hours and still felt beat) and now he tells me he wants to eat with his friends.  This is just a bad confluence of events.  He is big on family dinners.  In order to please him and maybe for once have a peaceful meal together, I went out of my way at great expense to get food into the house, cook a nice meal and now he wants to duck out.  Normally I don't mind him going out but I had been craving his company, looking forward to a real family dinner and was dead on my feet.  My dream was shattered.  My good intentions wasted.  And did I mention I was tired?  I wasn't exactly mad yet but I was a powder keg.

While I was sitting at the table going through the recipe I was going to attempt, hubby was gnawing away on the loaf of fresh bread I had just bought.  I looked at him and asked him to break off a small piece for me and he jokingly pushed a crumb over to me.  I blew.  I mumbled a few expletives under my breath that I'm sure he caught wind of while I stormed off to another part of the kitchen.  He suddenly became very helpful with dinner which is unusual for him.  Probably a case of the guilts.  I guess he really wanted to go out.  He hasn't gone for quite a while since he has been so busy working. Like I said normally I don't begrudge him that.  Today I was tired and I have an amazingly short temper when I'm tired. 

So this is the point where I put my cranky pants on.  I put together dinner while he hovered around trying to be useful.  Again very weird behaviour on his part.  This is normally what I crave but I was too pissed off to enjoy.  I shocked myself and made a very decent Chicken Saltimbocca on my first try.  A little salty but pretty good.  I want to switch to some better ingredients next time but it is worth trying again.  I couldn't believe how easy and fast it cooked up.  For the recipe go here.  Just type in junk@junk.com when it prompts you for an email address.  (I didn't do the flour dredge and it came out fine.)  I was so tired by the time I was done even though it was really easy.  I should have taken him up on the offer of no dinner but I didn't want the meat to go bad.  And maybe I was being a tad stubborn.  Like I said just a bad confluence of events.  We enjoyed the dinner.  The kid picked the prosciutto off but ate the chicken.

Now, kid is upstairs being sick.  Husband is out with his friends.  And I'm stuck by myself at home on a bad TV night.  I'm still cranky and restless and bored.  Crap I hate this.  And I was in such a good mood this morning.  ARGH!



From



ID Bloodwork Round 2

I went for another visit with my infectious disease doctor and his fellow yesterday.  This is at a huge hospital in downtown Boston so it is scary that the staff know me now.  Anyway, I got what I consider some very good news.

1. All of my inflammation markers are going down.  This means that whatever I had my body seems to be recovering from it.  Yeah!
2. My thyroid is out of whack.  Now this I find a bit weird since I had it tested back in June and it was normal but the ID doc told me that sometimes there is a delayed thyroid reaction to an infection.  They took four more vials of blood to check all things thyroid and I should hear back in a week.  If the second tests confirm the first it is off to endocrinologist to get some meds.  In a stupid way I hope it does come back positive since thyroid problems are relatively easy to fix.  Even if this doesn't cure me at least I will feel way better and that is a step in the right direction.
3. She (the fellow) put me back on the B12.  The odd thing is she said that the B12 shouldn't effect me as fast as it did.  This is making me doubt myself: was it some kind of placebo effect?  Am I mentally deranged and making myself sick?  I'll have to ask my regular doc about this and/or my shrink.
4. He finally heard what I was saying about lack of energy vs tiredness.  He is talking to a colleague at MGH about my participating in an XMRV study.  I find this very exciting on two fronts.  First that he is now seriously considering CFS as a potential diagnosis (which isn't good but it is validating) and second, as a scientist and patient, I am very excited to do anything to further the information on XMRV and CFS.  We need a cure.  Even if I end up not having this disease there are millions of others that need help.  While I'm too sick to do anything else at least I can be a guinea pig to further our knowledge and this makes me very excited.

So all in all a good visit.  I crashed hard afterwards which was a bummer.  I was having trouble even hobbling around the house.  Still haven't gone shopping.  Doubt I will get there today.  I have an appointment with my regular doc regarding my stomach issues and then it is off to the chiropractor.  Looks like this week is all restaurant food.  Bummer.

What Not To Eat

I don't know if you have ever seen this, which is very cool by the way:

What the World Eats, Part I

So here is the Homer Simpson version:



see more My Food Looks Funny

Treatment News from the UK

Surprising results from a survey done on ME/CFS patients on the effectiveness of various treatments including: pacing, graded exercise, supplements, yoga, behaviour therapy and many more.  spoiler alert: graded exercise does NOT work.  No surprise there.

http://www.forums.aboutmecfs.org/entry.php?631-Treatment-the-UK-way-the-ME-Association-s-ME-CFS-Treatment-Survey

Pain Pain Go Away

Well the Celebrex wore off yesterday.  OMG I have never herxed that bad coming off that stuff.  I usually feel a little extra joint stiffness when I stop taking it.  I've been on and off the stuff for my osteoarthritis for years.  I used to take Vioxx for it before it was taken off the market.  But back to yesterday.  Normally I would say I was hit by a bus but this was more like being run over by a dump truck.  A really big dump truck.  Like....

Scarfed from

See the guy leaning up against the wheel?  It was BAD.  "How bad was it?", you ask.  It was so bad that one of my really bad headaches woke me up at 4:30am.  Out of a dead sleep.  I had to get up and take some pain meds, which I wasn't supposed to touch so my stomach could recover, and then sit watching TV hoping I wouldn't throw up from the pain.  It was a bad morning.  So today despite what my doctor said I took my Celebrex. 

I'll take the blue one.

Now I feel human again.  I have some pain but it is mild.  I am not under attack from the killer headache monster who can morph at a moments notice into a migraine.  I'm a little achy and the head is a bit twingy.  I guess the headache monster doesn't want me to forget it can attack at random.  He is probably lonely and just wants some company even though he isn't welcome here.  So even though I have some pain and even though I still can't get off the couch much,  I am happy today.  Yeah me!

WeHeartIt

Round and Round We Go

I ended up back at my docs on Friday with lots of bowel pain and problems digesting my food.  He took me off B12 and Celebrex and Protonix and put me on Nexium.  I can now eat but I'm getting stupidly tired and weak again and everything HURTS again.  OMG, either I can feel okay and not eat or feel like crap and be able to tolerate some food. 

So I started looking into stomach issues and CFS and ran into two interesting items:  CFS patients have low stomach acid (as far as I know this is only anecdotal since I haven't found any published papers on it yet) and there is a specific gastric bugs that show up in CFS patients.

Here are the links for further reading:

http://www.fightingfatigue.org/?p=1271
Low Stomach Acid in CFS Patients

http://www.gastrojournal.org/article/S0016-5085(97)70075-1/abstract
Stomach Virus

http://www.sciencedaily.com/releases/2007/09/070913132933.htm
Chronic Fatigue Syndrome Linked To Stomach Virus
ScienceDaily (2007-09-17) -- Chronic fatigue syndrome, also known as ME, is linked to a stomach virus, suggests new research. The researchers base their findings on 165 patients with ME, all of whom were subjected to endoscopy because of longstanding gut complaints.

 
This makes me wonder if my infectious disease guy is onto something.  He is worried that something is wrong with my guts.  I'm now looking forward to seeing him on Wednesday.  I am going to bring up the whole low stomach acid thing and see what he has to say.  My stomach problems started with the B12 doses not the start of my pain meds but I was put on them since I was eating a lot of aspirin.  There was definitely a problem with my stomach even before I got chronically ill.  I had to take calcium, magnesium and zinc supplements or suffer leg cramping when I skated.  I also had to eat large servings of protein to keep my energy up.   I had to balance my meals very carefully to keep my blood sugar even and my energy at a constant level. If I had a vegetarian meal I was hungry and tired within a few hours of eating.  I remember being concerned about how much meat I was eating but it was the only thing that stopped me from being hungry and/or tired later.  We are basically working backwards: I have a documented B12 deficiency, now we have to find out why and then find out the cause and hopefully there will be a cure.