Cytoxan

Starting Cytoxan in pill form tomorrow.  Marx wanted me to do infusions but we have a $5000 deductible which would need to be met.  The Rituxan infusions i did last month did no good and cost $14,000 each!
Still grasping at straws.   Also trying to get approval for Ofev, which was approved for IPF in Oct.

My latest blood work shows the same amount of inflammation plus my Vitamin D and B12 are still low despite 50,000 units of D plus B12 shots weekly.  I am also anemic again.
Not looking forward to losing my hair.  I may freeze this winter.

Can't walk at all without wanting to pass out. Saturation rate goes into the 70's then lower if I continue to move.  Up to 8 to 10 lpm 24/7.  Still feel out of breath at times.  Diffusion rate down to 12.

Good news is the insurance approved a wheelchair and it should be here this coming week.

Lupus Brain Fog

Understanding the Unseen Realm of Lupus Brain Fog
by Kim Nault ©

First published in The Lupus Magazine

An estimated 70-90 % of SLE patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person. The lupus brain fog is classified as a manifestation of organic brain disease and is of one of the 19 manifestations of NP-SLE/neuropsychiatric SLE that has a broad spectrum of manifestations, including psychiatric disorders and neurological syndromes of the central, peripheral, and autonomic nervous systems. Each manifestation is vast and complicating and far outside the scope of this sole article.

Sadly, the actual field of NP-SLE is still in its infancy, there is not much research done on this vast topic and not too many doctors fully understand this form of organ involvement. Many assume that the brain fog of lupus is just some quirky annoying problem, that it is not that bad, not that serious of a problem. For more than half the patients with brain fog it will be a quirky, sometimes an annoying and even at other times a comical issue, but for others it will be very disabling. In addition, lupus brain fog notably fluctuates with and without disease activity.


I have heard many heart-wrenching stories, of patients whose very own doctors have ignored or even minimized their conditions and complaints as mere irritants. Some medical practitioners do not regard the lupus brain fog as a disabling issue that reduces their patient’s quality of life. This is unacceptable. Lastly, if such large amounts of lupus patients are living and battling with the lingering consequences of brain fog, than why isn’t someone in the research field really pounding the scientific pavement for us to pinpoint the exact cause of this and yield our patient population better treatments? We deserve better diagnostic tools and therapies in our lives while we try to climb out of the trenches of the cognitively challenged.

There are also a high number of lupus patients with the secondary Antiphospholipid Antibody Syndrome/APS/Hughes Syndrome as well as those with concurrent fibromyalgia, both who seem to encounter more obvious signs of the insidious brain fog. There are many running jokes among patients regarding the effects of the brain fog monster in their lives. While we have to admit that some of the brain fog incidents are indeed hilarious and even downright entertaining to our loved ones there yet remains the silent population within the brain fog group who are overwhelmed with the mental and emotional impairments brought on by NP-SLE.

The lupus brain fog can cause:

• Cognitive Dysfunction (impaired abstract, concentration & reasoning skills)
• Short-term Memory Loss
• Verbal Fluency Dysfunction (difficulty finding words)
• Confusion
• Impaired Recall
• Depression
• Anxiety

Patients struggle with the cognitive impairments and the ripple effects that it has on their lives. To some patients it is embarrassing, frustrating and certainly regarded as incapacitating. I recall a forum discussion where Angie Phillips (NP-SLE/APS patient-advocate, founder/ creator of Ardent Cerebrations: Musings of Lupus Survivors!), earnestly explained that for her, the disabling effects of NP-SLE have been far more devastating than that of the pain caused by SLE. That she has incurred more disability from the cognitive issues relating to CNS lupus, that she would gladly take the pain and have her mental faculties restored to the way they used to be. I too, have described to my loved ones that I have teetered on near organ failure and have accumulated physical impairments, but not to have the consistency of my cognitive sharpness and verbal fluency has rendered me more defeated than anything else I have ever faced.

A few months ago, while at my primary doctor’s office we were discussing organic brain disease and she explained that neurologists had discovered that commencing to treat stroke patients with SSRI (selective serotonin reuptake inhibitors) antidepressants immediately following stroke promoted faster neuron repair and recovery from their strokes. She surmised that if antidepressants use was benefiting recovering stroke victims than people with organic brain diseases will also benefit from using them. Before you scoff at the idea of swallowing yet another pill, you might consider having a frank discussion with your doctor about whether you may or may not benefit from taking an antidepressant.

If you have a health insurance coverage that will cover neuropsychological testing, you may consider having that done. Once the tests are completed, the psychologist will make recommendations of activities that you can do to exercise areas of your brain that are affected by the brain fog. I know some patients who do brain games to exercise their minds and keep themselves as sharp as possible. There are very good games on the internet developed by neurologists and neuropsychologists, and a small amount of time surfing the Web may provide you with a good site to frequent. Do understand that lupus brain fog will wax and wane, some days will be better than others will. Do not be hard on yourself!

Coping and Strategizing – Lupie Cognitive Survival Tips:

• Do not multi-task (it can prove dangerous)
• Do not overbook your daily schedule
• Do not over commit yourself
• Prioritize appointments/events/activities (don’t double book things on the same day)
• Determine your peak energy time of the day (schedule needs around that time)
• Reduce background noises when needing to focus
• Use only one calendar (mark doctor’s appointments in one color)
• Set timers for reminders (cellular phones and your PC have different applications)
• Note pads (one for pocketbook, one for computer desk and one for kitchen countertop)
• Keep things simple
• Learn to say “no” (we do not have to commit to every event or activity)

Do not be hard on yourself! Explain to your loved ones about your frustrations and concerns with how lupus is affecting your cognitive abilities. Some of our loved ones may even have simple suggestions to simplify things in our lives, which may foster better memory and peace of mind. Please do not try to tough things out on your own; this will not produce great results. Be willing to ask others for assistance with things. If you are a type-A control freak of a Lupie, try the Zen Lupie practice of not being a control freak! Living with a chronic illness while life whirls about us, can be at times very stressful. How often do I forget that quality of life begins right smack between my very own ears? As in life, some days will be easier than others will and when we lose our way, another veteran patient stands ready to hand feed us morsels that will lead us out of darkness and place us back on the path of inner strength and hope.

*The best resource in your healthcare is your own doctor. The Lupus Magazine does not endorse or recommend any medication or drug company. This article is informational only and should not replace the medical care of your doctor.

I refuse to give up!

I got my vent a few weeks ago and have used it for going to acupuncture, a short shopping trip with Æmilia for her birthday and for a quick shopping trip with Chris.
It is almost too much work to use it.
Strapping on the unit is easy.  Carrying one tank is not hard but negotiating the damn hoses that are too long is a royal P.I.T.A.  I need to use bigger tanks which wasn't supposed to happen.  I am using more O2 than I did on the demo.  Obviously there is no solution to moving easily without dragging O2.  But I CAN walk with it whereas I'd usually need a wheelchair or scooter to go out.
I guess it is time to accept my limitations.   So what if I shouldn't be alive at this point.  I REFUSE to give into this crap called IPF!!!

A portable Ventilator!

Last week a rep from Breathe Technologies met me at Dr Marks office and did a demo of their new non-invasive ventilator.
He said I'd have to do two 6 minute walk tests. One on regular oxygen and one with the ventilator.
I laughed at him.  I KNEW I couldn't do it.  Well, I lasted 45 seconds (on 8 liters) for the first test.
Recovered for about 5 minutes and changed to his tank (the ventilator needs a specific canister that I'd need to change to)
There are three settings and I needed the highest to walk but I did it!  For 6 minutes! On 4 liters!
My SAT rate stayed at 99!  It's never on 99 unless I am staying totally still on 7 to 8 liters.
The ventilator weighs just about a pound.  It needs a specific "pillowed" cannula and the tube right under the nose is double the size of a regular one and is UGLY, but I can breathe with it.

I instructed Ann to tackle the guy for the machine but she refused so we're waiting to see if I can get insurance approval.  If not the machine is $5500 and I'll have to sit in my wheelchair at a major intersection and beg if I have to in order to collect enough money to buy one.
I might even be able to go to physical rehab again!  My muscles are SO weak now from not being able to move without being out of breath and cramping all over.

Shar came for four days last week and it was great.  I ended up having too many dr appts and it was nice to have her with me when I saw Marks.  We are considering Rituxan rather than Cytoxan because I really can not tolerate throwing up and possibly aspirating again.
Marx is trying to get insurance approval.  We'll have to wait and see.
Arizmendi sent me to see Greiner to make sure the wicked fluid retention in my leg wasn't due to heart issues.  An EKG and Echo later I am fine and I think we finally have the swelling under control and the cellulitis gone.  At least my leg doesn't hurt as bad anymore.  More Scripts... Potassium and magnesium.

Shar has offered to take a leave of absence when I feel I need someone here 24/7.  She is worried I'll be afraid but I'm really not yet.  I don't want to die.  I REALLY don't want to.  I want to see all my babies grow up but it isn't going to happen.  It is so hard to move at all now but if I stay still and calm I can breathe easily and be ok.  Existing more than living but it's better than not existing.  I still have lots of books to read, sewing projects to plan and conversations to have.

Ann brought the kids over and they went swimming.  Gareth liked his Dominos but Æmilia really loved the art kit and clay.   They played lots of games on the iPads after dinner.  Grandpa brought Firehouse subs because his middle appt. canceled then they couldn't even quote the last appt due to mold.

Sick as can be yet again

Went to Arizmendi because my calfs were hot, swollen and painful.   Had a Doppler done Wed. Afternoon that I thought was going to kill me.  My inner thighs are black and blue and painful.

Thank God, no clots found but even with antibiotics and a second diuretic (Bumex) my ankles are still swelled.  Fever on and off all week and now wicked pain across my back.  It feels like the flu with no runny nose or more congestion than usual.  Slept on and off for three days now.  Ann has brought the kids by and they have been so great.  They want to go swimming and I just can't get my act in gear.

I'm mobile!

After weeks and weeks of trying to get approval for a decent scooter or wheelchair we finally caved in and bought a used one on Craigslist.  After the mess of tring to find a used POC. I was really nervous about spending the money and having an unusable item but I think all is well.  If not we're out $450.
The couple that sold it to us said they'd bought it used, in Sept.  for a niece who had a soccor injury.  They put it in Chris' car for us and when we got home Chris backed up to the block wall in front of the apt and the height was perfect.
I took it for an intial spin, out to Huebner, almost to Bandera but a pole blocked me from continuing but I may be able to get past it if Chris moves the right arm in a bit.
Met Tina, the other "baby" of the Villa's.  She is also 56.  Says there is a new guy who is 55 so we aren't the youngest here anymore.
Also met Liz, I think was her name.  Tall beautiful woman who has a 7 lb.teacup chihuahua that has a  wicked deep bark.  Adorable.
Sat outside most of the day while Brye and Tope cooked.  I made German Potato Salad this morning and now I'm tapped out even though I probably slept 16 hours last night ~ on and off, of course.
Facetimed with Bran and Megs.  Talked to Miz for a bit.  Read a bunch and almost ready to sleep yet again.

No scooter yet.   Supposedly I need to pay $600 if I want one, which is half the cost of a cheapie model.  I don't have $600.

Chris borrowed an electric wheelchair from Janine at work but it needs a charging cord.  
That will cost $350 (non-returnable) and no guarantee the chair will work if we get it.
Looks like I'll have to look for a used one on Craigslist or at a pawn shop.  I just can't walk more than a few feet without wanting to pass out.

Dr. appointments this week with Garcia and Saigal plus two acupuncture appointments.
Christa, Avery and MaryEllen came for the weekend and Brianna and Anthony are coming on Tuesday.  Margo and the boys are also supposed to stop in.

My new normal sucks

No other way to put it.

I got the new, larger concentrator last week.  I really believed the being able to turn it up to 8 liters to walk around would help but it doesn't.  I no longer feel like I want to pass out if I stand up but it hasn't helped nearly as much as I'd hoped.
SAT rate falls to the low 70's if I move at more than a crawl.

I should be getting a scooter this week.  Hopefully insurance won't drag it out too long.

Went to the movies!  BIG mistake!

On Thursday Sally picked me up and we went over to the Regal Theaters on Vance Jackson & DeZavala to see Saving Mr. Banks.    I left my second canister in the car assuming I'd need just the one as long as I sat still after recovering from the stroll in.  Wrong!  
From the minute we sat down I had to keep turning it back up from 3 to 5 lpm (and I wasn't saying a word or moving at all)   Sally had to go out and retrieve my other bottle.  Wicked time getting to the car and then at least a half hour to recover once I got home and had the continuous flow set as high as possible.   for the past few days I use the big unit and a canister also when I have to move around.  Good temp. solution.
Called Providacare again and they said they didn't have the orders for a bigger concentrator.  Called Susan at Dr. M's.  Her comment was a very droll "They Lied."   Today I called everyone again and as of noon Jerry is on his way to deliver the larger concentrator.  Still not sure how the getting out of the house thing will work but we'll deal with that later.
Seeing Marks later this afternoon.  I don't think I'm "sick" right now.  I just think this is my new low.

Been in the cottage for 4 months now and I'm adjusting to my new normal.
Can't walk 5 feet without getting out of breathe.  Dr Marks ordered me a concentrator that will go up to 10 lpm.  I'm currently on 5 all the time now except when filling canisters.    My car wouldn't start last week so i walked to the office slowly.  Coming back I saw "glitter" of white light as I practically crawled home.  No more walks for me.  Dr. Ordered a scooter but insurance reimburses almost nothing.

We are so in debt it is killing us.  Finally got approval for the Adcirca so that is a $2000 headache taken care of but The Vest is going back because they've decided not to approve it for home use.  I can get 7 treatments a month. vs twice a day. Chris had to have a tooth pulled.  Borrowed $500 from Sharon. I've cut down on dr. Appts because of the $35 co-pays.

Met Fanny who moved in behind us. (Chris is still here and probably not going to Alburqueque)  she checks on me often.  Brought over some great cabbage and potatoes last week.

Stan is here visiting Ann this week.  She and the kids stayed over Tues night then they took me to Balance to get pinned. Chris is in Corpus for the week.

Yard sale on Sat.  Sally & Jason will set up so they can move easier next year.

An Eventful Few Months

Sick all of Sept and Oct.  Finally, after two courses of antibiotics I agreed to go into the hospital for testing.  Oh yeah, had a second right heart cath the week or two before I ended up in the hospital.

Was put on Adcirca, which the insurance company spent months denying payment on.  My heart is finally damaged from the lack of oxygen.  Still no approval but we have new insurance so who knows...

Last PT session on Oct 24. When Ann had strep and I was finally convinced to go see Marks again.  Saw Heather instead.

I also saw Dr Saigal, a renal specialist, for the edema and he put me on Lasix up to three times a day.

Back to the hospital stay...

I went in on Monday Nov. 11th   Had a lung scope done on the 12th.  Met Dr Zajac, an infectious disease dr after they found three different infections and thought I may have aspirated something.  (Ya think?!?   With the way I cough and gag I don't doubt it!)

Then they sent in a gastric guy; Margo's cousin Dr Garcia.  He ordered a stomach emptying test to be done on Wed night then again Thurs morning, if I remember correctly.

Almost forgot; I had a cracked rib, from coughing.   Tests showed my stomach isn't working at all.  The juice I drank at 7 on Wed night was still in my stomach at 9 the next day.  

Susequent testing in Dec showed wickedly bad GERD and Barrets Esophagus (mom took me for that testing at NC Baptist). Garcia also diagnosed me, after a cpepcide test, with dysmetabolic syndrom.  Put me on Metformin and I dropped almost 20 lbs in two weeks.

While I was in he hospital Ann and her friends moved a bunch of stuff into our new cottage at Leon Valley.  Three garage sales in Oct and Nov grossed almost $3000.  We sold the pool table, fridge, Chris's tools, some dressers, the coffee table, shelves, the treadmill, camping and Christmas stuff, the patio set, rugs, tons of kitchen stuff, car stuff, the A/C we never opened and lots of little junk. AND we STILL have a full storage unit.  

Change of names

Miss Julianna was born on Friday at 6:01 but by Saturday Mom and Dad decided she looked more like an Avery Rose.  So welcome to the world tiny Miss Avery.

She checked in at just over 5 pounds.  5lb3oz and 17.5 inches long.  She is a teeny little one but strong.  Can't wait to meet her.

I had a wicked headache and fever all day yesterday and today isn't looking much better.

Marks finally called in the script for the nebulizer.  That, along with The Vest might make a difference.
Had the second right heart cath done on Thursday.  A little hypertension with exercise.  He will talkto orher pulmonologists to see if the Viagara is warrented at this point.  He thinks itmight be too much, too soon.

Feeling great!

The Vest is the best thing ever! I haven't had a wickedly bad coughing fit since I started using it.

Danny & Margo brought the boys over last night to join us for movie night.  Ann picked up Peter Pan.   A little chaotic because it was last minute but overall it was wonderful having all the kids here.
I miss my guys so much.

Gareth's Birthday

Warren is here for the weekend, he and akk the Beckers stopped over for lunch.  Glenn cooked.  They are now going to "the boots mall" then out to dinner with Johnny and family.
Gareth loved the book with the toys we got him.  Downloaded lots more games on the iPods and Kindle.
Making notes for my End of Life Directive.  Chris really wants to take the job as district manager for W TX and NM.  I am so afraid to even try going to a higher elevation.   Having more nightmares and night terrors.  It has to be connected but I can't seem to stop it. I am so afraid I'll die alone while Chris is away two or more weeks a month.  
The alternative to moving there is two small apartments.  One here, one there.  Lovely last year, living in a complex with noise and a parking place too far away to think about venturing out.  

Yesterday after acupuncture i stopped at B&N for Gareth's gift.  Supposedly had a half charge on the concentrator but it ran out 10 min. into shopping.  Used the charger in the car but not enough of a charge to keep it going to get into the house.  Brye was here and had locked the door.  I totally panicked when I couldn't breathe after wrestling the concentrator out of the car and to the door. Keys in purse under the pile of mail I was holding.   Scariest moment yet.

Told her about the job thing and she suggested us living together.  No way, no how.  I can't and won't ever live with her again.  She reverts to sloppiness too easily and I can' live with messiness I haven't created anymore.  She says she'll move back to UT if we move.  That may be best for her as maybe she can pry her brothers fingers off her inheritance and not have to work.  Told her to file for bankruptcy.  The courts will get her money for her.  Her brother is screwing her royal.  She lives in an apartment while her nieces and nephews get houses on her dime. Why she won't hire an attorney baffles  me.

Chris is on his way home early.  He set all the appts this morning.  Sold his 10 with a credit reject. 4:00 canceled.

Getting The Vest!

I thought I would be getting a script for use of the Vest at pulmonary therapy but I am getting one to use at home!  A nurse will bring it to me in a few days and show me how to use it.

I am SO excited.  No more having Chris pound on my back to get the mucous loose. I can use it twice a day for 20 min. Each time.

I also got a Simply Go.  Hopefully that will work out well.

Still don't know if I'm changing from Imuran to Celcept.

No word on another right heart cath or appt. with Dr G.

Great weekend

Great weekend so far.
Yesterday Margo brought the boys over and Ann brought the babes.  They played together really well and with LOTS of energy.  Gareth came over in backwards plaid shorts and a striped shirt (made me cringe! Lol)
Had a good talk with Margo.  They are putting the boys into 5 day a week school and Yolanda is going.  I kind of thought that might happen after seeing her with them last week.  She'd said she was concerned that Margo was upset with her and after watching her more with the guys I thought it might not be as good a fit as I hoped for.   Margo teared up about them seeming to need more "loving" from Yolanda. I just want to hug them all!  Especially Margo because I know how you can hurt for your kids not getting what they need.   I love those babes so much and the thoughts of them not being happy hurts.

We met Christa and Ro in Schulenburg and picked up the little ladies, who were maniacs in WhatABurger but were great on the ride home.  We stopped at Buckees for Dippin Dots!
Took them to see Planes today and $60 later (yikes) all are happy.  A snoozer of a movie.  Not half as good as Cars.   Swimming and the park tomorrow then a ride to Schulenburg and hopefully an early bedtime.

Saw Marks on Thursday

Might change Imuran for Cellcept.  Thinking of upping prendisone
Getting approval for The Vest.  Renewed approval for Pulmonary Therapy.
Talked about end of life directives and hospice care.
Also about a med approved for use in China which is in trials here.
I may try to contact Chung to see if he can help me get some from there.  Not sure of the legalities but what could they do to me?  Put me in jail and then maybe give me a lung transplant so I don't die there? Lol. Forgot to ask about medical mary J for cooking.
He said morphine when I need it but I really hate it if it makes me feel  like what i did after the lung biopsy.  Rather shoot myself.
Probably doing another right heart cath because of the chest pain I've been having. At least the last one wasn't bad.yeah, will owe Baptist yet another $2000 that they won't put on a combined bill.  More phone calls.

Odette left. Met new PA Heather.  Nice young woman.

He is also trying, yet again, to push for a portable concentrator.

Have to call him tomorrow to see how his personal life went this weekend.  His 26 yr. old cat is at the vets for transfusions and other hopefully life savings measures.

Me

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.
Click HERE to download “The Spoon Theory” in PDF format.
The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.


As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#comments

Sick of being sick

Up until very recently I could honestly say I didn't feel "sick".
Now I'm not sleeping, sleeping too much, dragging ass and barely able to move way too often!
In my head I'm moving a million miles an hour but the reality is I hate tv, can't concentrate enough to read and find myself staring at the walls for hours. And I'm always amazed at how fast yet how slow the days go by.
I'm tired of sitting in the house.
I'm tired of sitting on the porch.
i want to DO something!
Tried the movies... fell asleep! An expensive nap.
Not to mention, fun running low on oxygen.
I'd sob if it didn't make me choke.