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.
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
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
Friday, September 6, 2013
Ya! A three year project that My Mister has been working with hundreds of other good folk has successfully launched! We had the kids watch. It was so good to show them science in action. My husbands company along with NASA has set new laser that might one day communicate inter planetary. Fascinating stuff well it is on its way to the moon.
Good Job all of you on a successful mission. In a few days time the orbit will come so close to the surface of the moon that it could be like looking up at a plane in the sky.
The cooperation of so many many highly skilled people is an inspiration.
Posted by Donetta at 11:56 PM
Wednesday, September 4, 2013
This has been a full month for us here. Getting the children set in school and helping a friend during a surgery kept me busy.
My health a challenge as well. Bursitis hit my hip helped by an injection, with the MRI and such my low back showed some need for attention. Injections into some muscles in my mid back have helped with some muscles that were not willing to soften. The low back will be tested with injections into five nerves to see what one the stinosis is effecting. This in hopes to gain more mobility.
With my dear friend giving me power of attorney for a few days the task proved too much responsibility to be accomplished without a fair amount of stress and strain. Then I was exposed to a sinus infection through my son the day before infusion. I have been ill a week now. Monday found me at the ER with a pulmonary issue. Thank God no pneumonia so a stronger steroid and heavy antibiotics has me slowed this week.
I am however finding strength in dressing how I want to feel. I went to a thrift store and found a few nice things. Making jewelry for each outfit is a pleasing addition.
My loving husband sat with me during the ER stay and it could not have gone much better. We arrived to only one person in waiting room. They had been slammed all night, but we had decided to try to go to sleep. I awoke not being able to breath and arrived by five a.m.. It was so awesome we went to a new to us hospital where my friend had had surgery just the week before. We had a team familiar with power ports due to a cancer center next door. Great doctor and wonderful nurses and respiratory tech. I did not have to go in patient. Thanking God we arrived home to the children only being awake an hour or so.
I rested today and did some laundry, beading and an easy supper of baked potato.
The back pain has me up, but my mind is so full of creative ideas. I am at peace.
Posted by Donetta at 1:07 AM
Thursday, August 15, 2013
Living life with medical challenges gives us pause. We often wonder about the battles we face. Many who suffer procedure after procedure, indignity after indignity tire. We are left wondering if it is worth the battle. If we see our life as living for the next medical issue to arise, is that a life worth while. When what we have to look forward to is more pain, more surgeries the costs to our families both financially and emotionally "why?". Why fight it? I have battled the CVID now for almost three years. With the fear of job loss=insurance loss always hovering.
For every moment. Every moment that we have matters.
Last evening I shared my heart with my husband. I told him how it is to have such seeming unfairness. This week after finally overcoming having both arms reattached at the shoulder labium now another issue is resurfacing. I have been successfully addressing the PTSD cortisol syndrome. I have been able to get back into life and be active at home. Pain again accosts me. After not wanting to face another doctor office for a few weeks, I was forced to, or that is at least how it felt. I am now with bursitis in my right hip, lumbar sprain, stinosis is worse and the disc is degenerated between #4 and #3 vertibre. I will get an injection in hip next week and after the MRI an injection at the least in the back. There may be a bone spur. The sciatic nerve is being pressed as well as my spinal column. More PAIN! ARG! I had an injection of anti inflammatory medication and patches for it as well. I am unable to take the pills they make me sick. The patches are so expensive but are working pretty well. Insurance is such a blessing. I never knew that the patches for inflammation even existed.
I stopped blogging in part because of the tendency to resend into a cave when I am hurting.
My dear husband sent me this today. Click on the link. It really set my mind in a better state of courage to face the next thing.
Posted by Donetta at 11:57 AM
Thursday, July 25, 2013
This is while awaiting breakfast this morning. They both sit so pretty.
My place really missed me this year. Everywhere it is neglected. Three major surgeries on three different limbs, in a year and a half, will do it.
Life is good here. My health is slowly improving. I felt well and energized enough to actually do a post today. This is an encouraging sign. Everyone is still asleep. We have an extra child almost every night.
School starts soon. Both children are registered. Dove in 9th grade will be doing online studies. Dash is in 7th grade he will be going to the local public Jr. High. They are both healthy.
Steve is wonderful. We are in the parenting trenches but very little war time. We are having Steve do cataract surgery soon. He really needs to have some relief but he is healthy and happy.
I am showing my work at a nail salon and keeping my nails done with acrylics so as to stop biting them. It is a good option for me. Keeps me healthy. My IVIG numbers are doing well and staying in the good range so well as to labs only need to be drawn every 3 months now.
I hope love comes in and overpowers you with kindness and peace.
Posted by Donetta at 8:33 AM
Monday, June 17, 2013
It is the heat of summer here. In the heat the water and food supply for those tiny critters dwindles. Like any intelligent creature they are in search of it. Yesterday a few were found in the kitchen, today it was my studio.
As I sat and studied them I was able to see the entry was along an exterior wall along the foundation. In search of food they had a trail across the studio floor toward the kitchen stopping near the dog food bowl and then on to under the refrigerator at the other side of the room.
My son saw me watching them and asked what I was doing.
"studying them I told him."
he asked why?
"to understand what they are after and where they are coming in. Listening to them between the words."
I then explained to him that the ants will tell me what they need and why they are here. They are meeting the need they have. We spoke of the scent trail they make so others can follow. Dash said he should use his finger to interrupt the trail and then the next to follow would not be able to find it. I then explained it would need a much grater interruption.
By mopping with ammonia water the trail was gone and so are the ants. They are entering out by the garden. No longer do they find food or water over there. One day the garden will grow again. For now the ants are desperate. The days are hot. They told me so as I sat and studied them.
Learning to wait and to listen between the lines. That is where the critters speak, that is where God can be heard. There waiting listening between the words.
Posted by Donetta at 2:25 PM
Sunday, June 16, 2013
Life is GOOD
Days are so full of a good life. After four months I have finished the physical therapy on this right shoulder of mine. Now both shoulders are finished. They each had the labium torn from arm pit to tip of shoulder to the front. The bone was abraded and then screws set and the labium sewn to the screws. Amazingly to all involved I now have a good 95% function in booth arms. Not yet able to tie an apron so asking for help is a good skill I have gained.
Both of my sweet kids finished the school year on honor roll. Dash got the Presidential Academic Excellency award for all A's all year long. Dove got all A's but the one B. So they are set for summer.
Summer is full of time here at home together. We have sleep overs almost every night. Mostly here. So days have extra children who's parents are at work.
We have set to some wonderful new nightly rituals. My Darlin' Daddy Man and I meditate and still our minds in the evening. It is for me a time to stop and tell my loving God how much I love him. We are also learning to use the time to still our minds. It can be more challenging than you might think. It is a wonderful thing to share as man and wife.
Our Lab has had Valley Fever this last month and was VERY ill for a while. He is improving to a good show this week. The coughing and gagging has stopped. You have heard nothing until you hear a 95pound dog cough it is just gut wrenching. It was all day all night for a few weeks. I think he is making a complete recovery.
The IVIG is doing VERY well. My numbers are staying right at target. Labs for gamma counts can now only have to be done every three months. I have stayed consistently well. Antibiotics only twice in the last few months. Except for the surgery on my shoulder. No infections with the surgery either. Lifting my arm is still hard until I move it a while. I am told that if I keep up my home program it will still gain use and range of motion.
I became pretty overwhelmed there for a while. Three major surgeries in a 22 month time was just a bit too much. I guess God had confidence in me. It felt pretty close to the line of too much. It was just 12 months before the knee surgery that I began the ivig. With the monthly infusions becoming more common place that helps. Most IVIG sessions are 6-8 hours now. We have fun almost every month. We go to get our hands and feet done often.
At the salon we go to get our feet done I am now showing my jewelry. If I sell I will use it to cover the cost of pedicure. Pedicure is for me a medical necessity to keep cracked heals from becoming infected heals. I have learned to take better care of my feet and how very important it is. So selling jewelry there is a hope of cost deferred.
This last few months the education of becoming a life coach has captured my interest. Right now though is a time of rest and healing coming to a completion.
Be creative and make the life you long for. It might take a lot to patience and hard work. It is so worth it. My hopes to be able to garden this fall are a little bit of a seed of hope. My strength is low perhaps to return. It may not as much as I hope for the CVID is a critter stealing strength. Got to respect that critter too. Fatigue is a constant for a woman who was once a hamster on a wheel. Some days getting on the wheel is a challenge. I keep trying and never to give up.
Posted by Donetta at 1:46 AM
Thursday, April 18, 2013
Two years later for this is a re-post
Life is greatly improved and infusions are so much easier. I had no idea how long it would take to be normal again. Life is sweet and I am grateful. I also had no idea how many souls are out there with the same issue just floating in a no mans land. Many have found solace here. Please forgive my lasting absence. It took a while to accept through things grieving process. Also within the last 18 months I had a total knee replacement and labial repairs on both shoulders. Life does continue and it is full of promise. It is a joy to me to hear from so many of you who walk dazed in the CVID diagnosis. I will be coming home here to the blog.
Original posted in June of 2010
Genetics are a huge part of our makeup we are a generational being...
The test have returned and this is the diagnosis faced in my life now. The most difficult thing is the sadness regarding the nieces and a nephew who are suffering in the dark as to why their bodies are self destruction. They have no medical intervention. This greatly effects life expectancy. I must inform my siblings, the generation of those there after and so on to be tested and to seek intervention. To do this while guarding the hearts of those who have no comforter.
I have an 8 year old and a 12 year old. The infusions can sorta wipe you out a bit for a few days. Best case only one every 4 weeks. But it sounds more likely that it will ramp up to that. I need courage. I need tenderness to strengthen my heart. Knowing that siblings are in a untreated state, know now what took my moms life. All these thing flood my mind a white wash of thoughts.
The general fatigue and lethargy is so progressive. This has gone un-diagnosed for some time now and many years of repeated resistant lung infections of bronchitis and pneumonia. You know I see the sweet mercy. I asked why? Why do i get all this freaky illness that have left me feeling humiliated, demised,demeaned and folks including medical and family acting as if this has all been in my head. YEARS OF THIS! IT LEFT ME DOUBTING MY OWN CHARACTER AND SANITY AT TIMES. SOMEONE i THINK IT WAS Marsha SENT ME A LITTLE BOOK ON MINISTERING TO THOSE WITH CHRONIC ILLNESS. well at THE HOSPITAL DURING THE INFUSIONS FOR MYSELF THERE i WILL BE...WITH A CHOICE OF THINKING AND BEING THERE FOR ME AND CONSUMED WITH "me" OR EXITING THIS VORTEX INTO THE COMPASSION NOT ONLY FOR MYSELF BUT FOR THOSE AROUND ME.
with THE SAME COMFORT WE HAVE BEEN COMFORTED WE SHALL COMFORT OTHERS.
Must be a lot of folk needed comfort cause here it comes. Please remember to comfort my heart my dear friends and family. I will need the bracing up as I go forward. I can not let this stop who I am within my heart.
Man, it has really been one thing health wise after another for so many years. Understanding is the beginning of knowledge it will be then that I can walk in wisdom once I exercise the knowledge there is for me to gain.
A Wonderful post gave me a nice dose of
God works all things to his Glory
Everything to harm us is turned to glorify Him
May this walk given me to undertake be done in such a way that i remain unfettered by fear, bitterness and the potential effects of treatment.Treatment usually consists of immunoglobulin therapy, which is an injection of human antibodies harvested from blood donations:
- intravenous immunoglobulin (IVIG, most common treatment in the US)
- subcutaneous immunoglobulin G (SCIG, relatively new treatment in the US and UK)
- intramuscular immunglobulin (IMIG, less effective, painful)
IG therapy can't be used if the patient has anti-IgA antibodies but in this case, products low in IgA can be used; subcutaneous delivery also is a means of permitting such patients to have adequate antibody replacement.
IVIG treatment can be received by patients with a complete IgA deficiency if the IgA is completely removed from the treatment.
Inherited Immunodeficiencies: Common Variable Immunodeficiency (CVID)
DefinitionCommon variable immunodeficiency (CVID) is an immune system disorder which typically affects males and females in the third or fourth decade of life. However, it may also be seen in children. It is characterized by low levels of antibodies (another name for immunoglobulins) in the blood stream and an increased susceptibility to infections.
The diagnosis of common variable immunodeficiency is suspected when the patient has low levels of antibodies in the blood stream, a poor immune response to vaccines, and a history of recurrent infections. Patients with CVID develop recurrent infections of the sinuses, ears, nose and lungs. They may also develop enlarged lymph nodes (palpable glands in the neck and groin) or an enlarged spleen. Infections of the gastrointestinal tract may also occur. Individuals with CVID have an increased incidence of malignant lymphomas and autoimmune disorders such as lupus, rheumatoid arthritis, inflammatory bowel disease and autoimmune hemolytic anemia.
Influencing FactorsPattern of Inheritance
Genetic factors do play a part in the development of common variable immunodeficiency. However, there is no single gene mutation (mistake) that can be identified. Environmental factors may also influence the development of CVID.
Treatment StrategiesTreatment for common variable immunodeficiency includes monthly infusions of gammaglobulin (IVIG) and oral antibiotics to prevent infections. Prognosis is variable and may depend on the severity of lung disease prior to diagnosis and the occurrence of autoimmune disease or malignancy. Patients are encouraged to lead a healthy lifestyle, which includes good nutrition and regular exercise.
More detailed information can be found here.http://emedicine.medscape.com/article/1051103-overview
Sunday, March 31, 2013
Love is my Easter Basket
Handle in hand it swings in steady movement as I walk it sways
Sweetness as candy a child's dream
Nibble its' goodness
Joy for every day
As a bunny prolific life it stays
for love of a Easter Basket
I will soon be able to post again. Typing is getting easier. In the last 6 months I have had both of my shoulders repaired. The labium was torn off of both. They drilled holes and set screws into the bone. Then they stitched the labium to the screws. It has been a very long road of healing.
The childhood tares tore up to the top of the shoulder and stopped at the ligament. The recovery of the total knee replacement tore then the rest of the way. From arm pit to tip of each shoulder. I am now seven weeks out from the second surgery.
I have love in my basket for all things become new. Newness is often a painful journey. Love sees us through.
Know that you are loved simply for who you are.
Posted by Donetta at 1:41 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."