Inherited Common Variable Immunodeficiency CVID and suffering

A comment was left on my post "Inherited Common variable immunodeficiency (CVID)":

my 22 year old cousin died recently from his cvid complications, Yes I am sad for this loss but I am also confused, Why him and not me. This bit by bit dying, tumors being removed spinal surgeries, nasal procedures, and all the drugs,,,, enough is enough I wish I had the balls to end this horrific life, 

This was a no-reply comment so not being able to email you my hope is to reach out.

Not knowing if you might read this or not my heart is for you. I am so sorry for the loss of your cousin. I am so sorry for your suffering. The pains of surgeries and nasal wounds to heal. All the side effects of the drugs having challenges of personality changes that can just leave you in tears. A shell of yourself, the real you left hiding inside often in shame. It is a shame that is undeserved.

All of you who have been reading here brace yourself for truth. Yep, I suffer daily and have so for many years. Waking this morning and reading my guest note on the weight of it had a strange effect. You see although the suffering be a part of my life at times it seems it has 'become my life' 

it is life however. . 

I asked for life. 
 A couple of weeks before before my diagnosis standing in the shower I knew I was dying. With pneumonia and bronchitis not responding to medications. My strength slipping from me I knew that my days were numbered. For 40+years I had endured the humiliating of testing and suspicion that follow undiagnosed CVID . That was in addition to all the illness and pains. Life limited by odd issues that gave to me a cloud of hypochondria. Even those closest to me began to wonder. That was a great suffering of indignity.
CVID is all about suffering yes, it is a pain covering our soul, spirit and body.
Diagnosis is at the very least a chance to gain out of all of this lifetime of physical and emotional loss a bit of dignity.

I wish and pray for the courage to live this life. Just last night I had shared how I was tempted to feel the way my commenter had expressed. It is courage to live that I need. I am glad that the 'balls' to end it have eluded me. My shoulder is almost frozen up now and it has to be faced. Surgery is inevitable and I need the courage to face it. Then I need courage to face more physical therapy. In 2008 at the Neuro hospital they said that IF I have MS it is in its mildest form. Well now everyday getting up out of a chair often accompanied by a whimper that can slip out before I can stop it. My kids see me in pain, my kids know me in pain, but my kids know me.
Reading that statement about wishing the courage to 'end it all', helps me to remember it is courage to live through it all that I must pray for.
My total knee replacement has been so VERY painful that I even forgot how bad it was before surgery. I have to trust that my shoulder will recover surgery and my heart will meet that challenge too. This year has been new for last year was long and hard. I'll see if this painful movement issue is just Fibromylasia or perhaps a side effect of high counts. Joints get attacked with CVID and so it is.
I think of the woman of 50 who is out there young and vibrant full of activity and I admire her. What is must be like to have energy and strength. Mine was amazing for a season. Missing the ability to garden or do heavy activities without measuring and budgeting what must get done against a wish list of things that need to get done. Independence became asking a lot for help, that too takes courage.

Dear Nancy I now that 'wishing for the guts to end it all' is a thought in the mist of the suffering, I have had it or thoughts like it from time to time. I think dear lady it is the guts to live through it that we have to be begging for. This is hard and you are hurting the losses around you. My own sister died undiagnosed and that is how I came to my own diagnosis after so many years. I miss her and am angry and hurt over her suffering into her end. Grieving this condition daily faced with blows of illness and pain never lets it ease. Don't let us give in and give over into the exhaustion of it all. Perhaps being there to comfort others helps us. There is the Primary Immune Foundation to reach too as well. I have done little of reaching out but after attending the conference I felt so much less alone in it. 
I know it is hard, you understand that? Yet lets fight for the 'balls' to live through it with our dignity. CVID can not be allowed to take that away from us. I need you to fight for the courage to LIVE remember we need each other. You strengthen me by reminding me to ask for the courage to live. I thank you for that today.

I pray for my family and husband who has to help me more and watch me suffer. I pray for my friends who have lost me into the vortex. It is as though this has left me holding strings to manage and so few of them.
LIVING with CVID

Marriage Monday

Please Complete These Sentences

I am…..and it is wonderful to be
I want…..this day and the one that follows
I have…..life, purpose, love
I wish…..for more life to delight in the beauty of those faces that surrounding me
I hate…..to hate, rather I desire understanding and tolerance
I miss…..those who have gone on before me
I fear…..inappropriate fear and its destructive force.
I feel…..content, exhilarated
I hear…..click and clack of my Labradors’ paws on wood floor
I smell…..hope, fresh sweet promise of a clean home
I crave…..a cup of coffee and a slice of toast
I search…..for knowledge wanting to gain understanding hoping to respond to life with wisdom.
I wonder…..how many years I’ll have
I regret…..years of self distain where compassion would much better of served me
I love…..the freedom of forgiveness being able to place the heart before the actions
I ache…..over the suffering we have endured throughout our lifetime
I care…..and that makes me who I am
I always…..think the best of and am for and not against others
I am not…..a waste of breath
I believe…..I am loved by God
I dance…..when I remember to love being in love with my maker
I sing…..like the trees dance
I cry…..like the wells of earth, deeply and mainly when I am feeling loved
I don’t always…..look like who I really am
I fight…..for my heart
I write…..for my posterity
I never….wanted to be so hindered as to hinder others
I listen…..when I remember who I am
I need…..to remember
I am happy…..being

Morning home schooling

We have a routine. Finally it begins to press out. Lots of wrinkles with computer issues and book errors. Today is a new day. The first where it is more like it will be each day. Kids up at 8-8:30 dishwasher emptied, chickens fed, dog fed and computers on warming before 9 a.m. Kids fed as in actually making it with me getting the ingredients out for themselves. All is well this morning and no fuss.
This is a process and it is now becoming smooth.
Dove is doing great as is Dash. The last semester ended with Dash on honor roll. Dove has tested out at an 11th grade reading level. With the higher levels of seventh grade algebra being a math of reading; she will show good improvement now we trust.

As a bouncing ball I am at a beck and call to each child. Dove in in the office so walking has increased substantially for me. It is a good thing for my knee is needing the activity, however it gets to be a long afternoon and a tired evening hour. Like a young woman it is a labor of love, it may perhaps even keep me young longer.
Many changes have been made to accommodate the lifestyle. This lifestyle however has also made many wonderful opportunities. The children and I were able to take Monday off to attend a K12 sledding event in the high country.  After a long four hour drive we arrived in Pinetop, AZ.

We stopped here to put on a layer of clothing of socks for the temp had come down below 30*

 I was very hesitant to drive up the cinder pit road so I walked it with cane in hand first. Dash was poorly behaved and took off up the road without us. After walking up to the cinder pit I was given a lift back to the truck. The snow was almost to the axle, powder snow. There were only three vehicles up there and one back at the road a real low turn out of folks. Only one other family from the valley. Not too surprising given the economy and fuel costs. I had saved up in the budget to give the kids a chance to see the snow. It was a real disappointment for within 45 minutes we had to be packed back up to leave. The event ended at 3p.m., but this was not told to me. All I knew was it started at 1p.m.. Due to a bad turn that left me backing up 1/4 of mile on a snow packed tree lined path we arrived at 2:10p.m.. Being alone without a cell phone staying was not an option. I offered up some hot cocoa to the folks for the camp stove came along with us. So the other family stayed until the hot coco was heated on my tail gait. My kids each had only four runs down the hill. They were covered in powder snow, fresh fallen just the day before. Then they waited while the kids got back into our truck. We all pulled out at 3:33p.m.. The sun set was due at 5:30, in the high country it chills fast. When we left it had dropped to 17*in a hurry.

My two kids saw this courageous woman drive 4-5 hours one way up into the Northern mountains of Arizona almost to New Mexico. It was fun to spend long hours with the children sharing knowledge. I had been reading about Native American Wisdom. This I spoke of for hours with them.Then a 5 hour drive home.

 As you can see the snow was pristine.

 The truck is parked down on the road here the drive into the cinder pit is to the right behind the yellow sign. Snow had fallen the day before. 18 inches of powder that I had no intention of being on alone.

On the way down we saw a sunset on the Moggioon Rim. White snow with black shadowed trees against a vivid rose/orange sky. IT was so beautiful. We stopped in Overgaurd for a restroom break and down the mountains platou we drove. At one point two cars were stopped on the road ahead of us. Two elk were just off the side of the road, as we slowed to a standstill the other cars were driving off. We saw the elk with the full fur on the neck. They were so beautiful. Of course it was all eyes to the sides of the road all the way through that section. Sunset is the crossing time for elk.

Now today we work and tomorrow we work on school, tasks and such.

It is a wonderful life.

When you have need...ask

 Daddy man came home with a load of lemons today. He had taken the children (plus one) over to a nearby empty dirt lot to film and shoot the air soft guns. A woman spoke over her back yard wall and offered lemons to him. He delighted that "his wife loves lemons" and picked what she offered.
Now just the day before yesterday I saw them for 3/$1 and they were small. I was shopping and stopped in thought at the shopping list and asked God for some.

 Simple syrup is a staple in my refer. So within 5 minutes lemon aide for the family. They all were amazed at the fast offering. So after an hour or so we had another batch of simple syrup, lemon juice for recipes, lemon zest to freeze and more drink for the afternoon.

 ...and yes, a sink yet full of beautiful pesticide free lemons. To zest a store bought lemon is a no no for the wax and such is a rich poison of sorts concentrated in the rind.
After washing, air dry, zest and let the lemon rest to dry a little and it will be much less slippery to juice.

 Use this for pie, curd and also recipes for chicken or fish.

 The lemon juice is in a spray catchup re-purposed container and the zest is in a dispenser made from an infant/toddlers snack container. A pinch at a time is easy. When frozen the zest will be a dryer texture. Do not press it into the container and it is easy to pinch.

The last several weeks have been full of these wonderful offering.

A book I needed was on shelf with the invoice accidentally left inside. The manager gave it to me from the online site, used her id and it came to me at 2/3 costs. Again I had prior asked for the very book.

We needed some binders and such for the kids home school. When at the Jr High withdrawing Dove I was able to purchase at a greatly reduced cost and support the school at the same time.

We were also blessed at years end with a wonderful Christmas. It would have been a much different type of holiday had I not opened up to be willing to ask the Jr High if we qualified for reduced lunches. The $20 a week was too rich. Although we did not qualify we were called and sponsored a bit. IT was strange and humbling to accept. Being the one who receives is much different than giving.

Ask for your needs
Your Father knows what you have need of. Asking humbles us and Lifts HIM up. We all need to be needed even God

Good Morning

Well hi there
Happy New Year!
Everything is awesome here just really crazy. Dove has come home to do on line school so it is a time of huge transition. She is doing all the prep testing. With paperwork to in roll and like wise withdraw every moment is well used up. We are also setting up the ymca k12 time it is a 12 hour attendance a week with at most 9 to 1 ratio at the Tempe y just 5 miles away. This is free to the kids as it will give time with other kids and me work out time for my membership will be at a reduced cost.
I have been speaking to a lawyer and I do not qualify for the disability. One must work for 5 out of the last 10 years. It is an issue at 65 that I will fall under Steve's s.s .
Teaching will be a good 6 hours or so work for me with prep time and such. We are so happy the kids are doing so well. School started on Tuesday.
Allergy shots went well on Monday now that I got off of the meds for my back. I can not do both. My back is better so that is good too.


Doing this with sleeping issues he must not have woke me.

We moved the freezer out to the garage and got rid of the other refer. I LOVE having my window back it was a huge task. Still have a tree to get down.

We start our day at 8-8:30 and school from 9-2 or so. The lunch break is watching science or history documentary