We are home just over a week now. It was a wonderful trip. So many adventures. I still have my young guest here so we are yet busy with school set to start for my teens in a week or so.
I made it through all my adventures and just two hours away from home it all unraveled. We had been on flight for almost seven hours and my health failed. I had to get oxygen in flight. The flight ended with the medivac team coming inboard to remove me. I never inconvenienced so many people at one time. I had to be taken my ambulance to hospital. I spent the night there. We proved out no heart attack and blood clots. Possibly altitude illness and or possibly my pressure bottomed out. NO one knows yet why. I have to follow up with the cardiac doc on the 6th.
I was so mad that my goal was interrupted.
My ivig Saturday went well.
All in all I really did do it. I took a trip that sent me over 5000 miles from home. I was loved and favored all the way. I spent time helping others and seeing a reflection that reminded me who I am. Even getting to see that I really like who I am.
If I do fly again it has to be for shorter distance to work up to long flights. Now I have a mess of a house to work on. Getting kids ready for school and bills to pay.
Life is good and the grass is greener but the weeds still hide among every lawn. :) There are however a few things that I want to implement here.
Thank you Jaye and Lisa for the hugs.
I was hard to tell of how it all ended but I still succeeded in overcoming my fear. I am living with NOT dying of cvid. I do hope that my husband can see me now as powerful.
We took the teens all up to the Grand Canyon last week. I rented a wheel chair for the altitude still did not agree with me. We also took them to the Meteor Crater. Little trips and resting a lot. My energy was still good after almost five week interval.
So after four years of ivig I am so much more able. Still getting faced with limits but I will continue my education of learning to live within them.
Monday, July 28, 2014
Saturday, June 21, 2014
It is really happening. In six days my daughter and I will be boarding to fly to England!
This trip started out as an opportunity to build a lasting memory with my daughter. It was so exciting to think of all the teaching moments with her. It is an opportunity to try to instill all the things that time may not permit me. My time may be shorter that other mothers get. It is a thrill to have this chance to get to really know her heart too. She is amazingly kind and a delightful innocence not burned by prejudice, she delights in life.
I have my ivig on Monday. Most everything is done except a few things around here.
I told my daughter four months ago to dream and not to just dismiss her heart. We are invited to stay in a home for three weeks. Wow her heart heard and her faith in hope built.
My health is strong and I resting and preparing.
Listen to your heart. All around me the rules and fears and doubts almost lost my joy over the trip.
My sweet daughter does high school on line at home. She met and befriended a medically bed bound teen who also did school at home. The group of friends shared hopes and after a few months my daughter became closer to this dear young man. We skyped his parents and grandmother. It is his grandmother who is so dearly grateful to my daughter for bringing her grandson back to health. Their friendship gave the kids a future mindset. They both finished the grade yr and the young man was even able to do his testing.
My daughters heart healed another and gave a hope for a future.
It is the kindness of her heart, not the fears of evil that is to be witnessed here. Yet those who are so afraid of error made me second guess my own heart to a state of torment. I was and have been so afraid that I was a horrible mother to take her to England. That I was putting her in danger or harms way. That is the farthest thing from my heart. I have a release seeing that I as mother to this amazing young woman am due some credit for following the spirit above the seeming rules of fear.
We are blessed to go to England and stay for three weeks as guest. I trust in my heart that this is an adventure of faith and beauty. Opening ones life to the wonders of opportunity God sets before us.
Whether for a moment a reason or a lifetime these two teens will meet in person. My daughter will be celebrated for the wonderful friendship and kindness that gained another back his strength to hope again.
Both of the young adults are looking to the future, to education and employment one day. Someday perhaps to become engaged to marriage. It may be a moment or it could be a lifetime. I have witnessed an amazing relationship where they build each other up. They encourage each other to follow what is right within their own hearts. He plans another four years education as does she hope to attend college.
After six months of daily skype they will meet face to face.
I am highly thought of by his people yet it seems our own doubt and fear leaving me to even doubt my own heart. They are so very excited that we are coming. There are celebrations and events that they are tending to for us.
My daughter grieves that when Tom flys home with us for the three weeks that all he will encounter is suspension and assumptions that sex is involved. How hurtful and sad that that is for my daughter that she is thought so little of. These are people who deserve LOVE not petty judgements. I will do my best to example that love to them.
We are excited to take the family to the Grand Canyon and all. Toms health now is good, his family is very grateful that we will show him a little bit of America. It is Toms hope to one day have a good education and come to the US and have a good job to take care of his duties well. We have a separate bedroom for him and I will be here with them.
When we look upon another life and see evil perhaps it is the evil within us that is the true enemy to be faced. That we might face it all and learn to love our own self to become better able to truly love others.
Posted by Donetta at 4:55 AM
Tuesday, December 31, 2013
Today was a huge milestone for me. We let go of our chickens and our
bunnies. Tomorrow folks from a rescue are going to receive all my cages
and hen house. I will be dismantling my gardens and passing on the goods
I have accepted that gardening and hens and rabbits in the yard are now a season that must pass. I have peace about it. I cried a bit but the most amazing thing occurred
The man and his son who came to get the hens and the rabbits were wonderful folks. We all even prayed together at the end of the thing. He prayed for my health and for our family.
I loved my garden and now pass along all the gain of the hard work I once put into it all. The fellow even thanked me for all the hard work I had done.
It was beautiful
Tomorrow afternoon the other folks come to clear out a many good things.
I think I will try to sell my fence panels and a few other things.
I have peace knowing the animals are fed and watered and in no way neglected. It has been a real burden and a bit of condemnation knowing that they deserved better than I could do for them.
My children even have a peace that has rid them of the anger and sorrow of letting the critters go.
I accept that the seasons of my life have changed. I in no way give up or give in to illness. I give over to the abilities I have and choose not to overwhelm myself any further.
It is really pretty cool.
What a weight off knowing that all those tasks are no longer weighing upon my limited energies. More of me to do other things more restfully.
It was a terribly hard night for me last night. To tell ya true I feel a bit lost letting go of my garden and hens bunnies and all. It was as if I was disappearing and I was gone sorta. Like where am I now?
I got up in the night and my sweet husband insisted on hearing me out so I could process. We base our sense of self in what we do or are known for. I feel absent now. Me no longer the gardener the woman who all the kids loved to come and feed the hens gather an egg or pet the bunnies.
I gave my prized gardening veggie notebook away that contained so many years research and study at gardening at 1200 ft above sea level.
The Bee Bliss garden is no more.
The mornings no longer ring with hens begging fodder
Now the bark the rabbits tore off the trees reminds me only of dieing trees
I have said a million times to others...nature arbores a vacuum
I spoke of a hole in my heart. A vacant place. My children spent the day with my ivig nurse playing with her children. I went and had a mani pedi wore my mask and sunglasses and cried during the pedi. Spoke very little did not want to speak of it all
I awoke to my nurse and telling her of the transition and she is so startled it is all gone.
My daughter is staying the night with her, my son is home we had to get his stitch removed. I stayed home alone. I watched a movie about a healer and how she spent her life giving life to others.
I remember that God once told me He has a purpose for me.
I hope that propose fills this hole. knowing Him It will.
Just no fun walking around with this gaping hole in my sense of self.
Posted by Donetta at 10:42 PM
Wednesday, October 16, 2013
I have found a wonderful support network. It is called Daily Strength. They have an easy hundred different topic groups. I am meeting a few who also have this rare CVID.
Life within our sweet walls is good. The children are happy and healthy. They are doing very well in school.
It is hard to write here, this reminds me of who and how I once lived with such vibrancy. I am working on accepting life on its terms. It is a good life even if it is so very different. Grieving the change has come closer to acceptance. My garden looks like a deserted wild west town, as does all of the flower gardens.
I have two spinal procedures within the next few weeks and perhaps I will be able to toss a few seeds and tend them. We are eating together at the table so this a huge accomplishment. Dove is helping me wanting to learn. She came to me, a 16 year old now, asking me "mom can I do the dishes?I want to learn how to be a good wife." Wow am I blessed or what!
Dash is good he is choosing good character not an easy thing in this world. Steve and I are happy and doing our best to lean into being our best. We still have all ten hens, three bunnies and two dogs. Oh and a gold fish. Many lives here.
I hope the lives of you who read this thrive.
Posted by Donetta at 8:59 PM
Tuesday, September 10, 2013
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW – 30 THINGS MEME
1. The illness I live with is: Common Veritable Immune globbulin Deficiency with low IGa the defense in our saliva, a Primary Immune Illness, Fibromyalgia, Post Traumatic Stress Disorder and Joint and Spinal Degenerative Arthritis, pulmonary issues.
2. I was diagnosed with it in the year: 2010 two weeks after my sister died of it. With the CVID three years ago after several miss diagnosis left me totally demined and humiliated. The Later stages of CVID untreated acted like MS., seizure and several bazaar systems
3. But I had symptoms since: All of my life, infections and strange illness plagued me.
4. The biggest adjustment I’ve had to make is: Is having to mask in public, IVIG every four weeks of eight hour infusions of plasma. Slowing way down at my duties of homemaker and mother. Staying away from large gatherings of people, like church or gatherings.
5. Most people assume: Once infused I am immune to getting ill for four weeks. That is not always the case stress or fatigue can make me very vulnerable to airborne illness not having natural immune defenses.
6. The hardest part about mornings are: Removing the CPAP and breathing on my own getting past the eye opening pain and standing walking stiff.
7. My favorite medical TV show is: I think I tire of medical watching it on tv is just sad.
8. A gadget I couldn’t live without is: Under the cabinet jar opener.
9. The hardest part about nights are: Pain. Laying down increases it and taking the muscle relaxer and tramadol is disliked. I wish my day would have been more productive. Keeping a good attitude for a new day is tough. Meditation nightly really helps.
10. Each day I take 1 pills/vitamins. I do not take all of them each day, I just cant. So I do the most important ones. vitamin powder b stress tabs and the ones I can stomach. When on the antibiotics and steroids they are taken and the supplements are reduced.
11. Regarding alternative treatments. I study and supply myself with needed items. I am eating for my blood type and doing a cortisol connection protocol to help the effects of the PTSD. I do get very discouraged when I get sick.
12. If I had to choose between an invisible illness or visible I would choose: The port in my chest often reminds others that I really am sick. I helps me to remember all those donors of plasma that help keep me alive. My sister died in the indignity of invisibility. I live. The mask I must use makes me very visiable and is a hard thing to do. Some times I think that it is nice to blend in. I go with out the mask at great risk. Last time it left me sick now for almost two weeks. Physical invisibility is different from emotional invisibility it is the harder to have all these feelings all alone.
13. Regarding working and career: Dreams are less actualized but still fun to imagine.
14. People would be surprised to know: How sad I am for my caregivers.
15. The hardest thing to accept about my new reality has been: Future and the end that may come me.
16. Something I never thought I could do with my illness that I did was: Go out in public when the infusion is going on. My wonderful nurse and I go get mani pedi, or shop. People stare at me.
17. The commercials about my illness: Except for the copd or the arthritis nothing is on. It is a rare thing. Dont see to many commercials about donating plasma.
18. Something I really miss doing since I was diagnosed is: Gardening and growing flowers. Working with my body.
19. It was really hard to have to give up: Gatherings
20. A new hobby I have taken up since my diagnosis is: Keeping the infusion kit organized, watching a lot of HULU and netflix.
21. If I could have one day of feeling normal again I would: walk for miles in a cool misty rain.
22. My illness has taught me: That to some my life is only valuable in order to finish raising my kids. To me my life is valuable to me to live it for the life that I deserve to live.
23. Want to know a secret? One thing people say that gets under my skin is: "mom do you have to ware a mask?"
24. But I love it when people: Forget that I am sick.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 91 God loves me because I love Him.
26. When someone is diagnosed I’d like to tell them: Study and go to the Primary Immune Difficantcy Support group. Keep trying to reach out even when it is hard.
27. Something that has surprised me about living with an illness is: My nurse is here for me every month. She stopped all other patients and part time patients but me.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a home cooked meal. Made my chores easier. Kissed me on the forehead, and told me He was here for me.
29. I’m involved with Invisible Illness Week because: I am trying my best to get out of this dark lonely cave I have been held up in.
30. The fact that you read this list makes me feel: scared
Posted by Donetta at 9:06 PM
Older women likewise teach the younger women...
• how to love their children
• how to be self-controlled
• how to be pure
• how to be keepers at home
• how to be kind and submissive (not subservient) to their own husbands. (See Titus 2:3-5)
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By Maya Angelou
That a man should have to seek Him first to find her.'
When I say... 'I am a Christian' I'm not shouting 'I'm clean living,'
I'm whispering 'I was lost, Now I'm found and forgiven.'
When I say... 'I am a Christian' I don't speak of this with pride.
I'm confessing that I stumble and need Christ to be my guide.
When I say... 'I am a Christian' I'm not trying to be strong.
I'm professing that I'm weak and need His strength to carry on.
When I say.. 'I am a Christian' I'm not bragging of success.
I'm admitting I have failed and need God to clean my mess.
When I say... 'I am a Christian' I'm not claiming to be perfect,
My flaws are far too visible, but God believes I am worth it.
When I say... 'I am a Christian' I still feel the sting of pain...
I have my share of heartaches, so I call upon His name.
When I say... 'I am a Christian' I'm not holier than thou,
I'm just a simple sinner Who received God's good grace, somehow!
Words have power. Here are a few of my favorite sayings.
- A warm cup of tea is like a cuddle with a friend.
- The North American Indians have a more eloquent word for ‘friend’ than we do in English. In their language, the word for friend literally means, “the one who carries my sorrows on his back.”
- Return with Honor
- The sage anticipates things that are difficult while they are easy, and does things that would become great while they are small. All difficult things in the world are sure to arise from a previous state in which they were easy, and all great things from one in which they were small. Therefore the sage, while he never does what is great, is able on that account to accomplish the greatest things."
- "HOME IS WHERE YOUR STORY BEGINS"
- “Live so that when your children hear these words they think of you… Fairness Caring Integrity Honesty Love Trust.”
- "O Lord help my words to be gracious and tender today, for tomarrow I may have to eat them."
- "No man has ever been shot while doing the dishes"
Click here for all crafts
This was given to me for the third time in just a few weeks.
"For the LORD your God has arrived to live among you. He is a mighty savior. He will rejoice over you with great gladness. With his love, he will calm all your fears. He will exult over you by singing a happy song."