a few hours at home

Hello my loves, my friends and family
After much fuss the powers that be all agreed to let me go home for 7 hours to have infusion.
It went well. Dove who had been ill kept distance, unannounced to me daddy man had told her to do so to protect me. Poor girl. All went well. Only half the movie watched however us three adults covered the necessary physical needs for when I do get to go home next Saturday.
Spent the afternoon home, then later here at the rehab.
Slept most yesterday and slept in today. Had the best lunch.. I made favor with the young weekend cook and he really had blossomed. told him the eye eats as well as the mouth. The plates come out much quicker that way for others. Often I am given the most favor of all. Pointing out the needs of the elders has me in favor of them as well. Strange as they never speak out for themselves. The social study of cast be it patient/cna/nurse and such is no less issue in a nursing home. i am an odd ball. Loved by the staff and the other patients and residents dismissed/despised by the higher ups.
I find it hard to stay awake long when I type, or at most other times as well.
My leg is healing, only six more days here so gotta work hard. Getting home will be an adventure.

pain managment

good morning
Oh the love of a good egg timer. Steve got a real nice one up to me on Saturday. I have been keeping set with each dose and yesterday had good management. Last night they were real good to wake me as well. So this morning sleeping yet a small problem.

Last Friday night my two buddies came and as we were hanging out visiting the last dose wore off. We were on our way to get my meds when the nurse approched in the hall offering me a tramadol (mild).
The pharmacy was to deliveiver on the 3pm run my pain medication. Again it was dot here until after 10:30 pm.

Thus the 5th time I have gone without pain releif for up to 6 hour stints. This time I was not alone. They were here. My sweet Lisa and Trisha. Lisa held me and prayed. I had begun to panic knowing what was coming for me.
I felt the place where my bone was sawed off. felt it clear as you please.
More care was in place last night.
O have begun to get too panicked to sleep. If it wares off in my slllep I wake in torment.

Last night I was well medicated throughout the night. NO breakthrough Pain for one of the first nights that I have been here.
I have infusion on Saturday. It is worn off some for the Stress was so much this last three weeks. Hoping for a 6 hour medical leave to do it.
Hope it all works out. I need a strong cup of coffee so bad.
I keep dozing off even as I type thip
but the pain is in control.

Lisa, Trishia your my heros. Thank you for fighting for me and holding me through the teeth grinding agony.
I love you both so so so very much.
Lisa thanks for the snickers too :)
The black eye susan is so bright in the room. So alive.

I have to get to the dining hall, it is a thing I force myself to do to get out of the room.
ya all have a good day

battle in the field set for righting wrongs victory is yours

Hello Everyone
It is a bit hard to type due to the laptop is sitting real high on a hospital bed table thing. I'll try. It is sorta like a toddler trying to reach the counter.:)

These last dozen days or so have pulled up from within me some great and magnificent warrior who mad a difference. Many many hardships have I faced with the corprate bussiness powers at this nursing home. Many.
My rights as a patient have been violated 5 times some of them being serious. I have stood, during a time when even just sitting in a wheel chair was excruciating. Yet have I stood.  Yet see I the fruit of it. They just today have hired two additional staff members for this shift, this ward.  The nursing staff all admire and appricate me. The fight was not without insult or injury.

As for my knee
I walked (well sorta) for the first time Friday and was able to kick a ball on Thursday. Hard going. My brain is trying to recognize my severed muscles and get into action.  it is a thrill to me when gains are made,
I am coming well into terms with the new implant. strange thig it is

It seams I have given a new life to the dining room. The cook each day comes to me to hear knowledge of th trade. I have been given favor.

I am here two more weeks time. Not sure how to get the nurse privileges to infuse here.  I will investigate tomorrow. For now the day and the meds are taking effecct
need to go to let sleep come

good night

it is early morn up all night with pain so tired

jaye i can not email you the facility has it disabled

real hard guys]

Good Morning where are you today?

I found myself 

I am here at

Life Care Center of Scottsdale
9494 E Becker Lane
Scottsdale, AZ 85260

I can be reached via

4 8 0 -,,,,,,,,,,,,,,,seven,,,,,,,,,, sixty........
forty three..........
.. seventy four...

I hope you all doing well

So my new knew knee has proven it's bionic powers once again. It can actually wake me up in an instant when the pain med wears off! Now that's power!
It has the significant ability to say no if  it is turned for 'comfort' during the night. It is polite about it and will warn ya once...
Of course as with any Super Power one must obey

or 'else'...wa hahaha

'BAM!'

'SLAM!'

IT WILL SMACK YOU DOWN!

well gotta find some humor in it

:)

i made it online

i am in the rehab nursing home
my sweet local friends i am at a place called

life care center
near?86th street and Shea....perhaps the address is on Becker lane  North of Shea only a block or so? i was on a gurney in an amulet so that's the best i know

surgery went well on Monday
wend i was sent here to endure HELL!!!!!
they are corpret captures to an off site pharmacy it took 6 hour for them to get me a pain pill first night!!!!!second day, after awaiting an injection for anti nausea that was ordered mid morning then being told by the nurse that it would most likely not arrive until after he was off shift! when i asked when are you off shift he said 2pm!

Steve came up with my medication out of my infusion kit that had the rx on it for under the toung
mean while too sick to take the pain medication I had a second break through episode shaking I was in a wheel chair trying to get them to help me and some naive nurse put a alarm clip on my shirt. Then she stands me up for the toilet the alarm goes off! PTSD! she quickly sits me down I am demanding them that legally this is not alright. a PT walks by sees it all going on. whisks me away asks me to trust her. with out being able to be  medicated for pain because of nausea she works my knee as to release range of motion for by this time I had a peg leg.

Steve arrives with Dash in tow (home school) gives them the pills and they will not let him give me one until it was logged in. Nurse ran it back to me and mean while with Dash there a therapy dog comes. Distract Dash and me as well. Steve had to get Dash away for I was a mess holding my strings together with a real massive fray near at hand

pause....had to get help just now to get off the CPM machine, it moves my leg up and down) wow she came fast
anyway I have been here three days and it has happened three times that the cracks of this place have all but broken momma back' sure hope the system avoids steppin on those crack tomorrow!

Jesus and pain have been my constant companions too much company. rather just be with him without the pain.
pain meds just kicked in ") I am  off for the day...they would just curl their toes if I were a lawsuit type person. Nope just rather get lathered up and perhaps become a better advocate. For myself first then for the employee's and the ELDERS who can not speak up.

Dear Father rather than sit at the mercy of this place without any control over my days may I for ever just bask under your mercy.

thank you all for your prayers and lovin kindness I better rest now. good night


Remember the old don't step on the crack or your break your momma's back

never be the same again

there are these times that mark time. days when you really know you will never be the same. Looking at my beautiful leg, swollen and pained...by the end of this day it will never be the same again. forever changed morfed into steal and stapels.
ya know it will be all good.
we searched and found a good rehab Health South place it is on Shea and near 96th street in Scottsdale. 10-15 days. we searched hard yesterday wow there are really some terrible dives that have the audacity to call them self a rehab center

The surgery is at 10-11am this morning. I will be at the Scottsdale Thompson Peak Hospital for 3-4 days then rehab at the

The kids are cared for by my Michelle and my sister and grandma when she can. The house is covered so pets will be as well.

A good meal or two for the family could be nice, the freezer is full of what I call junk. they could use the nutrition of salads, fruits and so on. You know more the living foods. They will do fine. Dove is covered at school for the month of lunches.
Dove is ill...a sinus infection, as is Steve I started anti bio-tics on Friday. Dove started yesterday. Her sweet face broke out and she is really emotionally effected. My daughter so sweet and tender. Dash needs the diligence to do well and be self motivated.

I tossed and turned got up it is now 6:30. The peacefulness of feeding the hens some oats and sitting here is calming,
Thank you all for the loving kindness. The lap top may come with me if I am up to it.
i am good, enveloped not even sticky (the envelope thing) :)
Everything is as it should be. Courage needs stay mustered as the banner raised high I will forge on through this fine morning. I am honored blessed to be envied that I get this chance to walk one day free of the bone on bone pain of the last 5 years. I made it to the mark.
Hard to stop typing for the energy and the words they fill me up. I will need to fill them up soon.
the day is a gift lets go do it!

The new body

why wait!
There are promises of a new body some day when this one passes away.
Well in the morning I will be stepping ahead of time.

So many amazing things these last busy several weeks of getting ready.

My surgeon has spoken extensively with both the immunologist and the other ortho surgeon that I have attended all these years. The two surgeons met at the hospital and opened lap tops discussing my case in detail. I am told by my infusion nurse that this is unprecedented.

Thursday when getting cortisone injections in both my right shoulder and left knee I was told of this. I was also stunned as the doctor of 5plus years tentativly asked me...
"at the risk of offending you may I as something. Could we pray together over your surgery?"
I was so deeply touched at this gentle kindness.

For $60 I was given over $600 worth of walker, wheel chair and riser arms for the walker so as to protect my right shoulder impingement and the injury of late to my left wrist (a torn cartilage).  It has been a trying season for me.

All around me however are little kindness that blow even seasoned believers away.

I will have surgery in the morning, kids over at the Michelle's, for the night. Steve will be able to stay with me. They will only allow him on Monday as to keep infection risks lower. Infusion went well yesterday. I slept around 5 hours then a good 8 hours over night.

I know that many people are praying and for that my heart is full of gratitude. The kids are beginning school and so they could use it too.

I will be sent to rehab at a care facility for 10-14 days or so once out of the 3? days in hospital.
I am suppose to stay calm and this lap top is stressing me out. It is heavy on my knees too.

I'll close and go rest a while.
In all things his presence is palpable. It is good with my soul.

Daughter of the king

De-throned and tossed to the floor. So it felt like sorta over the past several months. Or was it that she stepped down off the platform from beside the throne. Some look at the house of royals as something to aspire too. While still others resent them and the authority bestowed upon them.

Telling of all that the throne may offer is an overwhelming task when one sees them self as more of a commoner using here the allegory...

al·le·go·ry/ˈaləˌgôrē/Noun

1. A story, poem, or picture that can be interpreted to reveal a hidden meaning, typically a moral or political one.

of imagery.

says....The princess. 

"How dare I speak of privilege when I see, and so much more identify with those who by no fault of their own suffer. They are left wondering where is their God.

Thus to leave no question of wound I speak in silence to the one who holds my chin up high.

Once she heard an outcry of a city. Morning grieving a weakened heart. A heart failing them. The city wept but non could comfort for the deeds had come upon them. Not only them but all of those citizens who lived among them.  Left wondering why this out cry this pain of grief and loss could be heard long before it's time. Left in grief as to the times ahead how this city could stand up to the things to come. "

Yet ...
Many fell. Thousands loosing homes, spouses and children. Left crying begging in the streets for lodging and food. Giving all they had acquired so as to avoid penalty. Both the righteous and the wicked left wanting. Hearing those who with wrecked hearts take their own lives dieing in the attempts to escape the consequences of the city, and for some the effects of their own choices.

Seeing this vision unfold left wondering the reason for seeing it before hand. Seeking only to practice wisdom. The princess became speechless. Simply standing beside her King humbly grateful that mercy was beside and before her.  Grace in this unmerited favor.
How could she with such regard for those around her say of the King, her God...all is well with my soul. With her all is well. Even in the midst of simple adversity...all is well.

With pantry and shelter all is well. With Husband and Children all is well. With health and provision all is well. Within every challenge all is well. Blindly all is well.

She might declare such things to an ear in stinging pain as they envy and desire the same. "Who am I?" she asked seeing all that abundance before her.

She a daughter of the king who is as those who sit at the foot of the banquette table only to be asked to come and sit in the place of honor. She wishing all along that she might share her spot with so many many others no less deserving. Knowing that it was not in any deserving that she was asked to come forward.

Comes she to sit at the table set before her. Longing for more chairs.

who are you?

The funniest thing happened to me yesterday afternoon on the way into therapy. There were two gentleman patiently holding the elevator. They said 'don't hurry'. Up we all went to the therapy place on the third floor. One man got off on the second floor.
The elevator opened as he kindly held the door reminding me not to rush. He then disembarked the elevator after me. He turned to me saying 'I suppose we are both going to the same place'?. He extended his hand introducing himself as Hank. In turn I said mine. Then he said the strangest thing...

'Ya, but who are you"?

I kid you not, something just came over me with the echo of. Be ready in and out of season to give answer to give answer. Out my sweet little mouth without thought came...

'I am a daughter of the KING, Wife to but one man for almost 30 years, and I am tenacious!'

He looked at me and then he said...
no, whats your name?  

Laughing I said I told you it was Donetta at the elevator. We entered the offices and my mood was literally aglow.

When this came out of my mouth this energy took me over. I floated like glee into the office. The gregariousness of my personality had returned me after all these many months. Lightness was within my heart.

Another woman asked as I was in the midst of therapy...

'how are you?'

My answer was..
'I'm hurting but I am happy'!

I have just been a chatty Kathy since

Perspective
There is a powerful force in this
over the last several days my perspective has been formed and muscled into one with much less inappropriate guilt over the kids and the surgery.
Jeriann thank you for your supportive truths to help my focus. I have gone from a sense of a failed invalid mom to seeing that this may as well become a success.
It is far too true that my life is in the hands of the one who makes the trees clap their hands in the breeze. As the days approach I am seeing the hand create an opportunity for my children to gain independence that I am much more likely by nature to coddle. Not out of a lack of trust however it is more out of a feeling of obligation.
Being an adoptive mother after 16/20 years of waiting prospectively I have the common sense that I owe the world more and must do parenting with a much greater sense of humility and diligence It is an adoptive moms perspective. Squed yes but normally never spoken of out of keeping in ones place culturally speaking.
Much more peace about things today even though the mild grief over the kids having to go through this lingers. Having done nothing wrong I an taking care of their Mother. I have fought the good fight with this knee for 5 years. Made the goal of taking the kids to Disneyland earlier this summer. Dove has her 14th birthday yesterday. Made able last Saturday after infusion to take her to do a little outfit or two. We shopped. Today nail polish. My nails are even long now.

When souls reach to souls perspective can be nurtured like a tree. Made ready to clap her hands in the changing nature of time. To all those souls of greater perspectives shared...I applaud you in the reflection of the sun on my face.

Love undeserved

Friends are around us a garland that can illuminate our way. I have three such who did so last evening. We four have met for many years to celebrate each other.
It had been far too long a time and a year has flown by us. At last we sat together around a table encompassed with mutual love and affection.
My head lifted up hearing of the lives lived, the days spent with children,, husbands. Lessons of the years time. Journeys ahead of each of us. ways parting in distance only as one of us is to leave to another state, to dwell far from us. It is o.k. to be sad she said. Thinking of the courage it takes to follow ones heart to walk into the vision and the dream of long years acquired. Even in the pursuit of a dream it takes the utmost belief that courage will prevail. My friends are love personified.
I am a very blessed woman. Many surround me who really are entwined in the love we have for each other.

We all find ourselves worn and tired of life during some seasons of our days. It is then that as last night we come to refresh our souls. Often I have wondered if I effect the tired heart as they do mine.

I have a special corner of my home that is set aside a sitting place. It is a corner of love, a place soft and still. Hours of time now spent here have shown how love can impact friendship. We all each one of us have these seasons of life that call for a tender heart to hold us in a special embrace. A corner in time where we too can extend outside of the self. Times have been for me within myself. Last night was so sweet to look out to see within the lives of my friends. Little boy stitches, Jr High wisdom and the courage of long distance relocation.

I have been so low that it is love to string me up, to tie me to remind me of love. My days will become dependent on others. Once again to lean into the kindness of those around me. It is for me a tipped scale for it is I who have been given more than any other. It is toward me that the cup flows. I have turned my head in a sort of inappropriate shame. Being so served, so loved, so cared for caused me great pause. For it is I who have had such a cup of compassion given.

I am a burden to others or at least that is what the enemy of my soul would have me believe. For who could ever deserve the kindness and generosity afforded me. "you have had enough you have had your share".
On empathy...those who have chronic illness are annoying. They bother folks. At least that is what some of us have allowed ourselves to believe. Now after years of looking like a person due the accusations of hypochondriac and Munchhausen the soul gets whittled down to the knee. In my case literally. I knew something was terribly wrong for several years before the Primary immune deficiency was identified. Now all those years just look like an embarrassment as judgement is dished out by some yet who do not get it.

That has left this woman depressed. Oh the words of a single man can wipe out the balm of so so many.
Thank God that man is NOT my husband.

Last night however sitting in that circle of friends...so depressed left me to wonder why it is that they love and care about me so. The three of them had it up their sleeve for several months now. To get us all together to celebrate each others birthdays...they were celebrating me...
I was so unaware, so caught up in loving them, seeing them after so long. Hearing them and enjoying just having us all together. I always feel like I wished I had done so much more for each of them sitting there. All I had given of tangible were simple necklaces made with one hand (literally). I chose findings that were special to the thought of each of them.

The three of them had gotten together some time back apparently and pitched in as a whole to give me a beautiful watch for my 50th birthday.  Then they added how they wanted to really do it up big...
Why do they love me as they do? How could others pour themselves out so when it has only been in my heart to do for them. Not so in my actions. Have you ever wondered why your loved so when it is not in anything deserved. They simply love me. I must of at one time really touched their hearts. I can't remember it.

Some in my lifetime have seamed to really resent that I am so loved by so many. I think that has made me feel so sad that they deserved to know this love too. It has left me feeling a guilt that does not belong to me.

It is like the world around me needs so much to know this love and I have been given so much of it...

Sitting yesterday in Physical Therapy for the first of what will be many many months ahead...it was awaken in me. I remembered sitting there so many many years ago. Seeing each soul pained in body as in soul in many cases woke me up a bit. It is time to intercede. It is come a day to once again sit pained in body lifting the souls of those who will be around me. Sharing the suffering. It is in that that my own suffering will be released.
I will have 6-8 sessions of physical therapy to get my quad ready for the total knee replacement scheduled on August 8th. With a shoulder impingement we will also be working to ready it for the use of the walker. It also looks as if my left wrist has a possible torn cartilage. We will be able to treat my shoulder as we did the knee and just keep it going as long as we can before corrective surgery will be indicated. My wrist is being guarded and injection of cortisone has calmed it enough for me to even type YA!
It has all just been too much.
The kids school begins 8/3 for Dash, 8/10 for Dove and my knee replacement on 8/8. The hardest thing is not being able to be there for the kids the way I want to. 

Pain has been tough, soon however it will be all but unbearable. Please if you could again afford me the kindness I do not deserve by holding up my little family in prayer. I am wrecked with guilt (fed by others as well) over my kids place in all this.  Many have spoken words of balance as to defuse those hurtful spoken things that float around in my head as it is. It is in the thoughtlessness of those few the battle is fought.

Utility progress by moving the refer and freezer inside.

On the 7th of July we moved the units into the house. On the 8th they were chilling down. Notice the decline each day. Now they are not in my favorite place in some ways. In many ways this is an ease and convenience with meal preparations. Not only do the units work so much easier, the garage/ laundry room door stays shut.

The savings will be so huge!

By looking up your utility company online you too can track your usage. Give it a try. We have our billing on an average monthly plan. We also use 'time of use plan'. In the last quarter we were able to bring the monthly bill down $25 every month. I am so excited to see what will come of the savings on the refrigerator and the subzero freezer inside.





From: To:

Total usage

On-peak usage

Off-peak usage

Display average temperature

Zero balance budgeting and the cost of electricity

What a difference a few changes made

With the year and a half of zero balance budgeting focus on costs that could be reduced. We began Dave Ramsey's program 18 months ago or so.
Utilities are our only other monthly after the mortgage. I began to focus on what numbers could be whittled down. On our budget we use % based categories. Depending on misc quarterly and yearly bills (that are saved up for on each monthly cycle) some months those %'s alter.

25-35%  mortgage
5-15 %   utilities (Electric, water, phone, internet. We have a pay as you go cell for emergency us only)
5-15%    groceries (people and pets)
5-15%    personal (includes, life insurance, computer, allowance,school supplies, holiday gifts and pet care, mag subscriptions)
2-7 %     clothing (adults, kids)
5-10%    savings (major fund to cover 3 months wage is the goal, kids education)
10-15%  charity
10-15 % transportation (includes auto ins. broken into months and set aside as well as a line if we were to have to pay a deductible, fuel and repair, registration)
5-10%   recreation (movie purchase, restaurants, travel fund, admissions)
5-10%   medical/health (co-pay, Rx, durable medical, dental)

There is  a column for actual and one for the estimates. After studying the estimates the budget is set. Fudge room is added. One upon a time I did not have a line for recreation and learned that it is a very necessary thing that gives muscle to the goal. Something to shoot for.
One day I will do gross instead of net and add a line of all the payroll deduction such as medical ins., taxes, and the like.

This has worked well for us and we were actually able to get a vacation to Disney this year.

We are on a payment plan of the balanced budget with the electric company so we pay the same every month. It is reviewed every four months. Recently it came down $25! a month with a bit of hard work
Hanging out laundry
window awnings
shade screen (came with the house)
duel pane windows ( came with the house)
time of use plan (1-8pm in summer to reduce electric use) run machines at morning of evening hour
Kids training :)
Watch the sun open West windows in a.m., East windows in p.m. Closing east in a.m. and closing West in afternoon.
Run fans and AC is set a bit higher
Chill house during overnight hours
AC is on a timer set to the time of use schedule
as is the water heater
Calking is the last thing yet needed to be done now.

Well now that we....

Brought the freezer 

and refrigerator in from the garage. 

The opening of the laundry room door to the garage every time we needed to fetch something, plus the garage being 120+ during summer gave us pause. It was the last thing on my list. A list that has been a year long goal. It is said that it can save at the least $15-20 a month per unit.

We are now testing the inside temps on each unit.
The freezer of one was set too low.

We extended the light blue valence for the counter was a bit inset of center to the window.

By adding a plant the wall is hidden. I'll miss the window a bit, however the ease of all of the units within a reach is really amazing. It will really make life easy with this knee thing too. It was hard to think of the house looking strange, I let that go. By pulling some tricks out of my hat I think in no time it will look much better.

 Never mind the mess :) a work in progress. The studio was also rearranged last month and has yet to get all ordered. I have done a great deal of fung shui around the house. These areas once organized will really serve us so much better. Making meals is already a lot easier not making trips to the garage.

 The old side by side really looks nice here. 

It is the drinks, everything baking (next to bread counter) and everything sandwiches/lunches.All nuts, yeast, and the like. Right next to the place that they will be made use of. I will wash the lettuce and the kids are able to begin making more things for themselves. This will also keep the snacks like fruit.

This will make mornings of making lunches all in a few steps span. The juice travel cups will be kept here as they were in the garage.

 The fourth of July weekend gave way to soda at $.20 cents a can.

 The old in house refer moved over next  to the dish washer is now the 'meal making center' everything for meal preparations are here. It is also the Ice chest next to the RO water outlet. It is so convenient.

Kept at 40*

 The deep freeze is for long term storage of grains and seeds. 

The meats are also kept here.

this is deep freeze to be kept at 10*

 Fall garden seeds are in the jars for this years planting.

 The white refer's freezer is far too cold.

By testing your units you can fine tune what energy your using.

 The freezer can be 0-30

Refer 30-45 better under 40

See the range of temp for each purpose?

There is no sense in cooling more than you need.

It is imperative however not to let your refer be above 40*

That is what started this whole post. We have been working hard on this job all weekend. It was a concern that the house would look bad. I actually LOVE it!

Well this week as you see will be full of cleaning and clearing up clutter.

Primary Immune Foundation Conference

there was an fund raiser this was my offering a real lesson in diligence.

It was strung but I had to do the findings tearfully one handed in pain.

it sold

it was $20 a night for valet so I parked down in a lot after dropping off my bag at the door. A very kind young man came for me in an electric cart and took me to the lobby. when i got there it was a bit early to get the room
the clerk however seeing me cane with knee and wrist brace took mercy
he set me up into a different room checking in several hours early
see the number three, God and I have this little game we have played for ever His presence is reminded me in the three. over over and over this way for many a year

this was the type of conference rooms

no longer 49 i went over to the 50's and up very strange thin the first time your reminded of it

the first evening was a huge event

this was the 30 th year anniversary of the PIF. A foundation that began in someones kitchen. a dear woman who lost a child due to primary immune dif. she wanted to have a foundation where those of us with the rare disorder could affiliate and disseminate information to one day perhaps cure this thing

click to enlarge this is the information on the basic
my adaptive immune issue is mainly the B-cell issue with secondary low IgA issue

i met a wonderful woman who helped me get my heart back. she and I sat for a long visit in the lobby after we had met up down below at the conference.
I was walking (hobbling ) to the escalator and she came up and asked if I would mind if she walked with me. So funny she reached into her bag and whipped out a collapsible folding cane. We were so kindred a spirit. She too a seer really helped me get past the anger. Home again into my heart.

Suppose that why you see me here again.


this was the only money I spent a very expensive $30! breakfast to the room the morning of the infusion at the hotel. I did not need to use up any of the energy i had. the conference was almost two walking blocks from my room.

That was the most amazing bread!

click on image

that's the in room safe

pay per use refer and bar under it

NEVER touched it! $$$$$$$$$$

at the conference there was all the free drinks of my choice. soda water, juice any thing. even at night an open bar. Strange though to think of immune folks drinking. everything that would be found in my room pay per was at the conference for FREE!

 I have used the techniques that were on the bed to make mine now. The top sheet is under the pillows, blanket folded down at the pillows edge. Head pillow folded in. Throw at the foot. It is fun to get to see how the Ritz does it.

what a palace! the way the pillows were folded in made for a beautiful bed

It was a wonderful rest.
the last day with infusion and the nurse with me all morning i used a wheel chair to transport from room to conference floor. On that day a very sweet fellow gave me favor. He called and got me a LATE check out Sunday so I could sleep through the morning. I had until 1P.M. !

SATURDAY night the kids and Steve joined me at the gala event. It was so wonderful. This place NEVER left me hungry. EVERYTHING was included in my scholarship. The kids swam in two of the pools until they closed. They went on home that night as did I the next day late into the mid day.
Refreshed. The trip was so helpful in healing the anger left by the many years of misdiagnosis, torments and indignities. Most of us had experienced them who had late diagnosis.

Masive Dust Storm Last Nigt

What a dust bowl around here. Leaving  a store after shopping last night was surreal. Approaching the door was so strange the cars were barley visible. It looked like it snowed.
Today the air was really really bad. The kids took the early morning well. We had a dental appointment. No cavities for Dove, Dash has three. Dove gets a bite guard. Kids have to go back in two weeks to do the work. $250 at that days end. Goodness! That my % of $1000.!
We came home out of the air. When I went out again in the afternoon a breath mask was in order.
Never have I seen such a litter of dust EVERYWHERE!
Over a half inch of it on my car when I came out of the store last night. A sweet lady helped by taking in the electric cart. I now have a handi cap parking permit. Helps to have a shorter distance however the morning had me all but in tears of pain at the dentist visit.
Resting it tonight, tomorrow as well laying low.
We have no property damage at all. Blessed, to be envied, fortunate are we.
Folks with pools face a terrible ordeal.
Yesterday we had a lovely time in my sisters pool. Just the kids and I.
I have partial use of my hand tonight. It is so wonderful to see it is healing. All the many appointments are coming along. We got a little computer desk to replace the other corner desk. Steve moved it on into the corner by my bed. Things are coming together. Got a toilet riser, jammies with stretchy legs and a heating pad last night. I have a loaner walker. I will make a bag for hanging on the walker to carry things. I think I might make a pocket to have set under the mattress and hang beside the bed. I got on line to a medical site and just perused it. Got a few real good ideas and have saved so much. The riser was only 20$ where on line it was almost $40. Got some skids ($12) for walkers to use in an old shower seat used in the garden. Wash it up and it will save another $60. Some slippers and slipper socks. Think the shopping is all set except a few little things.
Now pre surgery physical therapy may get a rx to do two visits just to set a strengthen program for my quad before hand. That way I will get up sooner. My old friend the PT said that my surgeon is so good that his patients are two weeks ahead of others treated by other guys. Nice to hear.
I'll have my physical and dental next Tuesday. Michelle will receive the kids early for a play date (thanks for the help sweetie). Monday an appointment with the immunologist. My nurse has set the new schedule and has given me some good counsel that the ICU is just as 'dirty as the wards. She said the ward would be better for the knee expertise. The Knee Replacement Training class is set for the evening of the last day of Doves Jr high camp. Perfect timing all around. I will be able to attend the last day with her as requested. Dash will get his books near that time as well.
Julie will help me set up the first weeks lessons for Dash will be doing distance learning on line at home next year.
I'll due two IVIG three weeks apart if all goes as planned and then my IVIG infusion will be two days before surgery and my immune numbers will get up real high.
So many things set up that is just July! At the end of the month a phone visit with the psychiatrist for a med check.
There will be a home nurse/ and or PT, or a week in a rehab hospital in my future after 3 days inpatient. Then several weeks of PT.
Today a thought
We have spent so much on me over the years and the coverage of insurance. We could of built a mansion...
Me a mansion. A house upon a hill.

Songs over us

This morning again as for the last week or so the songs over me have returned. This morning an old balard only a few words of it

tambourines and elephants all playing in the band

wont you take me for a magic ride du ta du

bother me tomorrow for today I'll have no sorrow

du du du du at my front door.

of late many tunes fly
one that is rather poignant is a song that has some words in it of a rather different power.

that's me in the corner

that's me in the spot light loosing my religion

I thought I heard you laugh

I think I thought I saw you smile

This new passage into 50 has taught me about really looking hard at what I believe and why. I will never let go of my faith or my friendship with Abba Pappa. My belief in the full meaning of Grace (unmerited favor ) and what Christ Jesus has and is doing.To feed the orphan and widow in the hour of need to love God with all my heart, mind and soul. To learn love better loving self as learning to better love others.

Religion to me is pre conceived notions about God. Judgments that occur that divide and separate. Of that I am loosing my religion and building a stronger relationship. Freedom in that for self, well it is in overcoming the fear of the judgments that divide. If they divide perhaps that is love not fear...loving so much as to not want to cause another to stumble in our own freedoms.

that's me in the corner

that's me in the spot light...

I think I thought I saw you smile.

that was just a dream...

Another one is a tune with a line...

No I won't back down

backing down just silences our own voice
 

thinking to build up courage

there is a fortress
it is in the reflection of all those things witnessed, learned seen and heard

time capsuled in this very moment

it is in these things spoken and listened too that i am shuffling aside from fear

dash embraces me
dove has her acts of kindness
Steve a gentle softly spoken hush that silences the loneliness, FEAR OF PAIN TO COME

i need to force myself to practice the gift of loneliness= reaching out

dash "mom...you remind me of everything that is good in the world"
dove" here mom, i saved this candy stick from vacation for you"
Julie "i love you, being here at your home is the closest place to heaven i have here on this earth"
a new friend from the pid conference"i am praying for your upcoming operation" an unexpected email she lives here in the valley. There are 5 of you who live here in the valley who i have met with CVIG
Amrita, Corey, Denise Annette Susan those others of you who have also hung in there with me.

this has been a hard season of grief with its many phases
it feels so good not to be stuck in anger. at the conference there were those who through personal experience understood what i have had to go through for so many years
at the big evening event i had to get up with cane in hand and just walk the room looking into each face at each table over 900 were registered from all over the world (many were spouse or friends of the paients. many patients were kids and teen who were in a different event.
what i saw...
in looking at each face...they were alive

i had it said once or twice" just as long as i stay alive to get the kids raised, even said it myself
this will not ruin us, there is help if we lost employment i will not just stop treatment and roll up and die

i am alive i see it in my face no longer a race with time,no longer fear of loosing my mind.
i intend to hold my grand kids someday!

MY HEART IS COMING BACK HOME WITHIN ME

typed one handed

Happy indepence

may the spirit of interdependence envelop us this weekend as we celebrate our nations independence.
this year i fell off the map. the oceans deep and wells dry became me
fatigue of spirit withdrawl into daily life
this year life felt too mundain and boring to even speak about.
coming to terms with health stuff
dripping of it speech repulsed me
being hurt and angry kept me pulled in and silent not just here but in life in general
numb
now the breath is returned with gaining better understanding
the primary immune conference made a huge difference
there i met people from all over the world who like me spent years off medical abuse through ignorance
there were others who were all but made to think they were nuts, hypochondriac longing for negative affection/attention
all the while knowing instinctively something was terribly wrong
even having effect on family and friends who became fatigued into doubt

anger consumed me as gratitude meld into pain
gratitude was all that it seamed was permissible in a social setting
why do we do that to each other?
encouragement must be inclusive if empathy
CVIG PATIENTS loose that privilege because when, or even if they get diagnosed properly all that care about them are so worn out by the years of complaint (justly so)

hidden illnesses under the cover of CVIG LOW IGa for me.. RED FLAGS WHEN ALL ARE RECURRENT
dental decay (18 root canals)
joint issues
fatigue
high rate of infections high use of antibiotics
asthma
copd
ear infections
hearing loss
bowel issues GIRD
MS scare and the testing for it lumbar punctures
early onset dementia
food allergy
cancer scare (breast,bowel)
strange issues unexplainable leaving doctors stumped


CVID LOW IGa leaves all the mucus membranes without the defense against bacteria

now meeting others and having someone really understand what it has been like...priceless
now i am independant of self doubt
justified of all the indignities
allowed now my own sorrow
perhaps now i can come home to my own heart
embracing my body as my own (such strong self doubt can leave one disconnected)

It was said to me that "my body is my friend" i have NEVER felt that way before

realizing how good it has been through all these years of misdiagnosis, ridicule and imposed shame. Well indeed it has been

thinking on all the things that suffered me without resolve only bandages that were often torn off in cruel suspicion...

i can see the goodness of my heart shining through. fear of becoming bitter...i am not bitter i won

I saw the rainbow in the midst of it all

Wow a lot has been going on here. My wrist will get xray today to see if a break is there.  

Post script...No break just joint damage, 

if not better in two weeks a cortisone shot.

ya!

.
Yesterday I met with the knee surgeon. On August 8th I will be getting a full knee replacement. That is if my wrist is not broken. Due to the knee cap scar tissue the minimally invasive is out of the question.

My greatest efforts are to keep in mind all of the things I have witnessed God do. That will get me through the challenges to come. Turning 50 this year has met the goal. No longer does my knee work however so it is time. My brace keeps me from falling when it locks up. A cane has been helpful too.

On notes of joy...We were rained on yesterday! Yes in June. It was a bazaar cloud in the blue sky. It was 4 inch drops! Just enough to wet the car thoroughly and the sidewalks. Later when we came into our community it happened again. I stood out in the heavy rain while the kids took the groceries in for me. Dash returned to enjoy it with me. There was a wonderful rainbow too. It had verga (rain that does not hit the ground) through it. Just beautiful. Found myself dancing in the drive way (well sorta).
Soon I'll go to see the sleep doc, then onto the hand care, xray and return to the hand guy to see outcome. I might get home with a cast. Purple I think if so :)

Steve's company had a HUGE successful .........well say it was a good day for the company. It will keep the place going. Long into the few ....accomplishments ahead.

Better get my shoes on.

Kids are wonderful so is the dog, canary and the chickens oh yes Hannah the hamster too.
Surounded by life. Living it with gratitude.
Hope that your well and smiles are upon you