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.

The Vest

Today at PT I tried "the Vest"  which is exactly that; a vest that inflates and then shakes the heck out of your lungs.  Weird but kind of comforting feeling.
Tammy put it on me for ten minutes.  It was so much better than having someone pound on your back to loosen the phlegm.  My cough was totally different after I did it.
It isn't approved for use in Pulmonary Fibrosis patients but is widely used in Cystic Fibrosis.   Tammy thinks I will qualify for use because of my history and symptoms.  I hope so.  Damn machine is $16,000.    Total madness!   Gotta get an Acapella flutter valve.

Ann & Glenn are packing the truck tomorrow for the move here!  Sold their house in 5 days!  How's that for good karma?

Another sign of oxygen deprivation

Tammy at PT was the first person to tell me about nail clubbing.  I've since found it also reported on a new site called lupuscheck.com

My nail beds started looking "puffy" a while ago and I thought maybe I was just imagining it.  Had I put my hands together, palms outward, nails facing down, thumbs towards body, I would have easily seen the something was wrong.  Rather than touching my nails now curve out over slightly puffy beds.   This is called clubbing and is a sign of oxygen deprivation. Not only to the nails but to other organs of the body.

SS Disability Approved! Yeah!

I receive my approval today!  I won't receive a check until mid November but at least I know it is coming.  Hopefully it will take some pressure off of Chris who has been working 6 days a week for 12 to 16 hours a day.  I don't know how much longer he can keep up this pace.  He is earning great money and we aren't buying anything more than food but we are still behind from last year and my toal lack of income since April.

My wonderful sister sent me $ to be used for a portable oxygen concentrator.  now if I can just find one locally I will be happy.  I can't find one so far.  Making me crazy.   I have called EVERY oxygen supply company in the city.  Might try Austin.

High Altitude Simulation Test

High Altitude Simulation Test (HAST) is a test that can determine the need for supplemental oxygen in patients who are going to be traveling by air or at higher altitude.  If you have a chronic lung disease (COPD, emphysema, chronic bronchitis, severe asthma), and you are considering a trip by airplane, or a trip to a higher elevation, you may need this test.  If you are alread on supplemental oxygen, you may still need testing.  This is simply the safest and most accurate way to determine if you will need oxygen at higher altitudes, and exactly what level of oxygen keeps your oxygen saturation in the safe range.  The FAA regulates that airplanes maintain a cabin pressure of bewteen 8,000 to 10,000 feet above sea level.  Rather than get into barometric pressure and partial pressure of gasses, this simply means that available oxygen has just dropped by about 6% compared to sea level.  The air we breathe at sea level contains 21% oxygen, but when flying, or at elevations of 8,000 feet above sea level, the air now has about 15-16% oxygen (compaired to sea level).  In the past, we would simply guess based on a patient's oxygen saturation.  If a person had an oxygen saturation above 95%, they were good to go, if not, they may need some supplemental oxygen in-flight.  Many hospitals and pulmonary function labs now offer HAST to accurately determine the need for high altitude oxygen, as well as the exact amount that will keep patient's safe when flying or traveling at higher altitudes.  If you are already on home oxygen, testing can determine what level you will need in-flight.  The test can be done several different ways, but basically, a mixture of nitrogen and oxygen is delivered to the patient to simulate the available oxygen at high altitudes.  During this time, the patients vital signs are closely monitored, as is the oxygen saturation.  If the saturation drops below a set point, usually 85-88%, supplemental oxygen is titrated to keep the saturation in a predetermined range (usually 88-90%).  Some guidelines recommend other screening, such as a 6 minute walk, arterial blood gasses, and other testing to determine the need for HAST, but the bottom line is there is a better way than simply guessing and estimating the need and the amount of oxygen needed for lung patients who travel by air, or those who plan to travel to higher elevations. 

Why you should stay healthy. Portable oxygen.

The major reason to stay healthy is that if the sickness doesn't kill you, dealing with doctors staff and insurance companies will.

The latest saga is trying to, yet again, get a portable oxygen concentrator.
I think the insurance companies figure if you are sick wnough to need oxygen then the Homefill unit with two bottles that only last enough to be out of the house a maximum of 12 hrs a day (set at 2 liters)are all you deservw to have. If you need more you have to buy it yourself.

So what happens if you want to go visit your grandchildren who live 2 hours away? Well you ccan go but you'd better plan well and get home before your tank runs out or you can ask for a loaner portble that your oxygen supplier says you can get if you sign with them. Of course it is NEVER available.

I missed a step-daughters wedding, a shower and a business trip with my husband because none were available. Try finding a rental and you run into a brick wall.

Back to the oxygen supply company.... if you have BC/BS don't try finding another company that says they can fill your need for a portable. They won't. BC/BS pays the suppliers on a buy to own program that makes it impossible to change. Anyone who says they will supply you changes their mind when they find out they might lose the $3600!!!!!! that BC/BS paid for the 1st year. Not to mention the $71 a month co pay.

End of saga 1.

Saga 2
I've been on 50,000mg of Vit D a week for more than a year. Need a refill but the rhumatologists office wants me to have bloodwork to make sure I need it. Haven't NOT needed it forever and other meds haven't changed so why spend $250 to check it? Well it isn't out off pocket they say so why would I complain. But the dr is on maternity leave so no open appts until Aug. Ok, bullied them into a bloodwork visit only on Tues.

Saga 3
Need to have my annual GP appt to have calestarol checked. Call the office to find she isn't practicing anymore but I can get in with her replacement at the end of Aug. Fine for me but hubby needs his diabetes meds renewed. Sorry they can't do that. And no he can't have renewals without an appt. at the end of Aug. So what if he strokes out inbetween.
Tried to find another GP and you would have thought I was asking for donations they way I was laughed at for wanting a quick appt.

Saga 4
Tried to change hubbys appt with his pain dr (too many back/neck/shoulder surgeries) Dr's assistant got snotty about if he had enough meds to last an extra week. She said he'd better not because they really regulate it. WTF??? They drug test him, at his expence, to make sure he uses only what she prescribes.

And should I mention the electricians who wired our house when it was built? Had flickering lights and found out we were lucky the house didn't burn down because the breqker box had wires arching. Just out of warrantee but time to go have a talk with them.

Saw Val & the girls

Val called and said the soccer tournament was canceled so they were going back to Houston early.
They went to the Alamo then met us at the Farmers Market. It was SO wonderful to see them. Poor Bella will not be happy when she gets home. Courtney, her rabbit, died yesterday despite an $800 vet bill a few months ago.
They are going to Sea World in July and I may go with them if I can.
Val offered to write me a letter to BC/BS. I wonder if a letter from the head of orthopedic oncology at one of the biggest cancer hospitals would get notice? Might be worth a try.
She is also going to send me info on a super light scooter one of her patients just got. She is doing a bunch of work related travel this summer and I offered for the girls to come stay if possible. I miss them so much.


Found out more of my limitations today. We parked across the street at Goodwill and I could barely walk to the market. Had to sit even though I turned my oxy all the way up. I am so frustrated and starting to think about gathering the family for what might be a last visit.

Wondering if I need to do lots of letters to the grandkids. How the hell do you die slowly???This truly sucks. Personal pity party time.

Brandy is here with Meg!

Yeah, Brandy came in today with Miss Meg. I didn't think I could get to the airport. Hundreds of road closures due to wicked storms all night and half the morning. Two people died in high water crossings.
Went shopping at Target.

Been a rough couple of months. I gave notice in the end of March then worked another four weeks waiting for the new nanny I found them to start. Long story there which I will add later.
Been off four weeks now and it has been a hard adjustment. My body is winding down too much, too fast.

Saw Marks last Wed. and he apologized that there really is nothing else for us to try. We talked a little about how band surgery really wouldn't help since I have almost no appetite at all. Asked if I can do damage by cutting down to 600 to 800 calories a day. He said no because my only hope to stay alive is a lung transplant and I can't even see the transplant team unless I lose 100 lbs. We joked about lipo-ing it off.
Talked about not doing a mamo or more heart testing this year because it would probably be a waste of $. Not said in those words but understood that way.

Putting off lung tests for three months because it won't help anything.

The physical therapists keep asking if I'm having any signs of depression. Same answer every time; I'm not depressed. I'm pissed. I want to live and it makes me crazy that there is nothing I can do.

Pulmonary Therapy at the Transplant Center

Started pulmonary rehab this week. I don't think they read my reports because when I practically begged for help to lose weight I was told the longer it takes to get on the transplant list, the better because transplants only last about 5 years. They all stood there astonished when I said my prognosis is less than 2 at this point.

I'm doing the rehab (against Dr. Rao's advice) but I believe I need it. Having muscle problems from lack of exercise.

Can't do the treadmill or stairs because my SAT rate goes to low 80's and even high 70's when I do. Turning oxy up to 4 for other exercises and weights.

Getting frustrated big time.

Oh yeah, still doing between 1100 and 1200 calories a day and not losing a pound.
Can't afford a portable concentrator and the tanks are hurting my back and not lasting all day so I have to conserve and not use the oxygen when I'm sitting still.

Sick all week

Back on Levofloxacin 500 after a 5 day run of Amoxacillin. Trying the nebulizer again also.
Nathan and Alex were sick two weeks ago and gave it to me. Margo is being great about it and has given me half of yesterday and today off. Going in late tomorrow but staying late.
Chris is loudly snoring in his chair. He is sick but refuses to do the nebulizer. He did ask Odette for a Z pack yesterday. I want to beat him. I must be feeling a little better because his lack of wanting to help himself is driving me nuts and the noise is totally annoying. He has the tv so damn loud then he falls asleep. If i turn it down he'll wake up and turn it back up again. Did it twice already.
Maybe its time to go to the store then read in the car for a few hours. Men.... Gggrrrrrr

Stalled

Still eating 1200 calories (or a bit less) per day. Meeting my goals for division of carbs, fats and protien but I;m not losing weight. It is making me crazy.

trying to change oxygen companies to get three bottles so I can make it through the day but the new company delivered a Homefill unit that won't work. Even Brye couldn't get it going and she can usually fix anything.
No one available on the weekends and no answer as to loaners for travel. I'm not a happy camper.
I wish I had the money to just buy my own concentrator. Had a bit of a panic attack Friday night thinking about what would happen if the damn machine stopped working. Guess I'd sit at the hospitalor in Mark's office.
Chris doesn't want me to but I'm buying a used concentrator somehow. I'll worry about a portable later.

Still dragging a bit but the diet is working pretty well.
Lost 6 pounds over the last two weeks.

So I started a diet log

I downloaded a MyFitness log onto the iPad and have been religously keeping track of a 1200 calorie diet. Eating hree meals a day with snacks other than eating only after work.
It is not easy to eat 1200 "good" calories a day. I'd been eating about 950 to 1000 and not losing anything. I'd been told for ages I didn't eat enough but I guess everyone was correct because i'm down 5 pounds this week

Not the easiest of weeks otherwise. My breathing is not good.Lots of choaking in the morning if I sleep in bed or in the chair even with the Musinex.
INR still ok.

Another mountain to climb w/no oxygen

Finally got a call from Martha on the transplant team and they won't see me because my BMI is too high. In other words I am too fat. BMI has to be under 30 and I'm at 45. I asked what weight that would be and she said about 160. She really seemed like she wanted to get off the phone as I asked more questions.

They have that I have Lupus. I explained that Marx says she hasn't diagnosed me with any specific auto immune disease although my markers are high for a bunch and that D'Avignon was who said I had Lupus before refusing to treat me anymore.

She was surprised I'm still working and active. said sorry she couldn't help me. I asked if they'd consider me if I lost the weight. I asked how the rest of my profile looked. We talked about my mess with D'Avignon, Marx's lack of diagnosis and my activity level.

She finally offered that I should call Methodist to get into their pulmonary rehab program. Called Marks for a referral.
She said they may be able to help with what I asked for ages ago; a way to exercise and keep my SAT rate up enough not to want to pass out.

Said to call her when I've lost 40 pounds and have 40 to go.

Going home to empty the cupboards of all food Chris doesn't eat. Eating light hasn't worked. Maybe a water, veggies, no dairy, no meat diet will work.
Guess the potato soup is going down the sink. It's just potatoes, onion and water but probably high in calories anyway.

Damn I am scared again.

Hyperventalating

The tea kettle above is one I've obcessed over for years. I actually dragged Chris to the Lennox Square Mall in Atlanta because it was the only place that I could see it south of NY.
Over the years I've looked at it at Neimans then Val got a little colonder from her mother-in-law in that pattern and it renewed my crazy obcessive want but I could never bring myself to spend $125 on somtthing so frivoulous.

A few days ago I made it my profile pic on BC. Covert commented on it and I told my obcession story.

Yesterday the Fed Ex girl came and I casually opened a box and almost fainted to find the tea kettle in front of me.
A BC friend, flossie771 Marcia Vaughn. said she was sending me a gift but I expected a wishlist book. I couldn't believe she saw my story and bought me my obcession. She said she felt compelled to buy it and she went with her feelings. She said SHE was blessed to be able to get it for me. I can't stop crying over her generosity.
I give to my friends on BC and try to do random good deeds like paying for the person behind me at McD;s or Starbucks in the mornings (gave my last $2 to a homeless guy on DeZavala just 1/2 an hour before receiving the kettle) but this makes my efforts seem feeble.

My week: Worked on the 31st until about 3 then came home and listened to the fireworks noise from abour 6pm to 2 am
1st we did almost nothing. B was supposed to come over but she was sick.
2nd Went into work at 9 then took the boys to Gymboree where Margo met us. Was using my oxygen and not feeling great and she suggested I see if I could see Marks. No antibiotic. Lungs the same as last week.
3rd Danny & Margo to Dallas until Sat. Picked up the guys at school then we had a good day. Chris stopped to check my antifreeze. he'd left the cap off. Hard night. Boys woke a few times.
4th Sonja and Richard came early at about noon and I met Chris at Sams then we went to Einsteins for a quick lunch before his next appt. Sold one today.