Common variable immuno deficiency (CVID)

Hello folks 

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)^[9]
• subcutaneous immunoglobulin G (SCIG, relatively new treatment in the US and UK)
• intramuscular immunglobulin (IMIG, less effective, painful)

This is not a cure, but it strengthens immunity by ensuring that the patient has "normal" levels of antibodies, which helps to prevent recurrent upper respiratory infections.
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.

Disease Information

Hypogammaglobulinemia - Overview

Hypogammaglobulinemia essentially means antibody deficiency, and includes numerous primary immune deficiency diseases such as Common Variable Immune Deficiency (CVID). Unlike AIDS or chemotherapy-induced immune deficiency, primary immune deficiencies are considered inherent, perhaps genetic.

One of the rarest forms of hypogammaglobulinemia, Severe Combined Immune Deficiency, is nicknamed the "boy-in-the-bubble" disease - a somewhat popular example known to movie viewers.

Both Common Variable Immune Deficiency (CVID) and IgA deficiency, whereas antibodies are decreased but not absent, are much more common. The approximate rate for CVID is 1:50,000 persons and the rate for IgA deficiency is as frequent as 1:750 individuals.

As the immune system is quite complex, CVID often involves additional defects in the immune system.

Common Variable Immune Deficiency (CVID) is mild to life-threatening: dependent on resistance to infection, treatment success, and if complications occur. Significant risk of developing certain cancers and autoimmune illness also exists for patients. 

Inherited Immunodeficiencies: Common Variable Immunodeficiency (CVID)

Alternate Names: CVID

Definition

Common 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 Factors

Pattern 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 Strategies

Treatment 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

Happy Easter

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

Donetta

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.

Patricia left a comment

 Yes dear Lady it can be very lonely. I think it hard when folks see me the week after ivig. I look so normal it is like nothing is really warranting the isolation. They can not see the risk to our lives. It took a long time to teach those around me why I insist they wash their hands. I have two kids in school yet. Each day I risk exposure. 
There is a gift to loneliness and that is to reach out as you have. I am here. Only one woman but with a heart of compassion. I have been recovering from surgery of a torn cartilage in my shoulder. Now having to go to P.T. I risk. Yet I ask if he has washed his hands and he is careful of it for. Last Friday I masked, it is so awkward to do so. Saturday was infusion day. I am stronger.
I too worked with kids, never gave birth yet adopted two. Almost dieing after both trips to Russia from becoming terribly ill.
Patricia Commiseration is good for the soul.

Patricia has left a new comment on your post "Inherited Common variable immunodeficiency (CVID)":

I'm a 58 year old woman diagnosed with CVID ten years ago. I am so interested to read the reports from my fellow CVIDers--well named, "an uncommon life."

I was an elementary special ed teacher who suffered for 18 years with undiagnosed allergies and asthma literally since my first year of college after getting pneumonia my senior year of high school. Got sicker and sicker, than finally was diagnosed with asthma and drugged appropriately and started allergy shots, which helped a lot. However, that didn't stop the near-constant sinus infections, colds turning into bronchitis, etc. that I would pick up at school from my students. I would take loads of prednisone to get breathing again and get back to work--and of course, prednisone impairs the immune system...

Finally, 12 years after my asthma diagnosis, in December of 2001, I got sick (which I did roughly every month to six weeks), but this time I did not get better. I couldn't pull out of the asthma attack and sinus/lung infection regardless of the amount of antibiotics and massive doses of prednisone and other meds I was taking. After trying to go back to work by going one day a week, then two days a week, and so on, I got to one week of working four days, and that was all--in March 2002 I relapsed and was sicker than I had been the previous December. That was my last week of work, ever. I had had my blood levels checked in the mid-90's to find them low normal. This time, my doctor checked my levels, and they confirmed the CVID.

I remember thinking, when I was first told about the IVIG, that that was the cure--just a few IV treatments, and I would be good to go. It was quite a punch in the gut when I realized that this condition is incurable.

For five years, I did the IVIG once a month, then got on a trial for subQ, which I've done now for five years, and I love it. I feel much, much better--but I am also extremely isolated. I do not go out much, don't travel at all. (Fifty miles to an acupuncture doctor is the farthest I've gone in 30 years--and she is unhappy with me because I have to cancel so often because of asthma flare-ups). I use a heavy face mask from fall to spring during rare trips out in public during flu season. I only eat in restaurants from spring to fall during off-times (dinner at 4:30, anyone?) when no one else is in the restaurant. When mosquitos are active, I must be very, very careful, as West Nile is in my area. It would take a house fire or me or my family being carried out in an ambulance to get me outside between dusk and dawn from May through October!!!

I only have regular face-to-face contact with my husband and mother, (no children--I was always too sick to even consider it) and they know enough to stay clear if they feel ill at all. I lead a very, very lonely life--but the tradeoff is that I am reasonably well (considering I take 14 meds, not counting the subQ, on a regular basis for other conditions). I have asthma flare ups often because of weather or pollen (even staying indoors...), but I've not had a serious asthma attack in six years, and have only had to use prednisone for a week or two a few times in the last few years to get me through a bad flare up.

I've done this self-imposed exile from the world willingly after being so sick for so long--but it is a very strange (uncommon?) life, very isolated. I know that some people could not afford to do this--go on disability and become a hermit. But it has been my salvation. An odd life, an uncommon life, but finally, literally, since I was 18 years old, a relatively healthy life. I'll take it. It's my only option!

Frugality is timeless

 Do you ever purchase just to have the latest and greatest of gadgets? Consider the humble $20 coffee pot. We had our four cup pot for a whopping 30 years! Monthly cleaned with vinegar and a good triple flushing it served us very well. My darling and I only share a pot on the weekend, otherwise i may have a cup or two every other day or so during the week. A four cup pot is a self regulating measure as to not be over caffeinated. If we needed more for company we just brewed two pots.
 After my sweet man tore it apart and determined it was a goner we opt for a new one.

We like things to be compact and so we opted for a new $16 pot to replace it. No fancy bells or whistles to break down. Living with simplicity is a frugal option to think about. We do the same thing in many of our purchases.
A coffee pot with good maintenance lasting 30 years is really not that surprising if the design is simple. Money well invested even in the small purchases will take your dollar far.

 In the refer freezer was kept all the pre-made or ready made meals. The fast foods the family used during my recent down time from the shoulder surgery. The old refer is still running just fine. It is used for sodas and over flow storage.

In the spring we decided to retire our 25 year old refrigerator to the garage and get a new one. We waited on that purchase and did a study  to discover all the pros and cons. We saved a long time and bought a large capacity french door with freezer on the bottom. This has really been a back saver!

Being frugal is to save up for the best you can afford to budget for, research and learn about your item on line. Utube and other sites offer user reviews. Avoid extra features when your able, it is most often the mother board computer parts that gives out. They are $$$ to replace. Fewer extras also mean no need to concern yourself with extended warrentees.

CVID infusion tip

Wow what a difference dilution has made. Friday I had my monthly IVIG. We changed it up from 40/400 to 40plazma/800water that is full dilution. The day was wonderful. I have the best nurse/friend. She took me to treat me to a pedicure and manicure during infusion. I have a fanny pack that holds the iv bag and the pump. Having the port is wonderful, we used a folded wash cloth in my shirt so the sling did not rub on it.
Even still being in a sling we were able to have a really nice day. We discovered that the water dilution is so much easier for my organs to absorb. NO side effect at all!
So if you notice the thickness of infusion ask your doc about diluting it. Really made it like nothing occurred. Even today I was full energy.

Pet Rabbits

Good Morning

Ginger and Sable are getting ready for a new day. 

They enjoyed half a bowl of bunny food.

 We used Dog runs 6x6 fence panels to enclose the hens.

That is the lemon tree in the upper image.

 The apple trees are doing very well.

 Sable is very watchful of Ginger. They are sisters of a sort.

You will always find them close to each other,

Even though they are very different from each other.

Post op visit held Great News!

SLAP Tear and Glenoid Labrum Injury

The glenoid labrum is a donut shaped ring of gristle that serves to deepen the socket on the scapula for the shoulder joint. It helps to stabilise and strengthen the function of the shoulder joint.
The glenoid fossa is the name given to the "socket" area of the ball and socket joint.
The glenoid labrum varies in size in different people and - a bit like a cartilage or meniscus in the knee - it has a wedge like shape in cross section.

The surgeon got in there and saw a totally different issue than what the MRI with contrast showed. It was not a compressed scapula tendon issue. The tear was sorta in the arm pit against my chest.The wonderful news is no bone grinding was needed and it goes from a 6-9 month recovery to a two month or so recovery!

Thank you all for you well wishes and kind prayers.

 

Encouragment

"Let no feeling of discouragement prey
upon you, and in the end you
are sure to succeed."
- Abraham Lincoln

wow! timing is everything to God. Sitting here today the thought came across my mind "How can I make a difference today?"
I am, today and that is all I need. Doing much is limited post-op,

The phone rang and on the other end was a woman I had had no contact with for many many years. She was calling me to tell me that she had recently come to ask Christ into her heart. She wanted to contact me to tell me that knowing me had made difference. She shared with me that she felt loved.

God gave me a sweet wake up call. No need to feel discouraged.

I took of the bandages today. The bruising is not bad. Pain is not to much. Actively I WILL NOT let myself go into discouragement. Her call gave me a good solid step to rise up on.

shoulder surgery

Hello'All
Everything is going well. When the doc got in there he discovered the ligament off the bone. I do not know what all he did but Steve tells me that the bone had to be drilled and the ligament stitched to it.
So my arm is in a sling. The medication is working well for pain.
My other shoulder is just following fast.
thank you all for your prayers

Life with Commmon Variable Immunoglobbulin Deficiency and Fibromayalgia

Hello to you Laura.

A commenter who has suffered undiagnosed left me several comments yesterday. My doc said that the estimated diagnosis time is now 15 years from onset! I had no way to contact Laura.

Sorry everyone for my lack of posts. It takes all my energy most days to just take care of my little family.

I have been enduring Fibromyalgia pain and lethargy. My numbers are good as far as the IgG. I am holding well. The last two months have had me in a holding pattern. A cellular Rhuomatoligst has confirmed that I do NOT have lupus or RA thank GOD! It is a mystery how the physical pain can grab so hard. A mystery solved in the Fibromyalgia. My nurse told me that a gynecologist she worked with said that fibro is related to endo fibers that free float in the body. At least that is the latest in research. I had several abdominal surgeris over the years ending with a total hysterectomy in 2001.

Well of late with that study it is now proven out that the shoulder impingement's are due to bone spurs. I have surgery on the left shoulder on September 7th. My arm is impinged now with a partial thickness tear along the bursal side of the disal course of the supraspinatus tendon. A common issue in aging and or overuse. My left wrist is in a bad way needing surgery as well. The difficulty in having pain that is greater than what MRI or x ray might indicate is the insulting response of an ignorant P.Assistant. I have  contact with a different hand surgeon but have been on hold until after the test to rule all the other stuff out. My hand is a wound unto itself also in need of surgical repair.

The ortho doc wanted to rule out lupus or RA. It has been over a year now with shoulders in great pains. The surgery should help, but more pain of recovery will be my lot soon. Pain can really effect a soul, this soul.  I do my best to take vitamin B's ,calcium and such.

It was a concern that perhaps the CVID was causing the generalized pain and lethargy. Fibromylagia is actually made worse with lack of sleep. Note that with both shoulders sleep is hard won with the pain. Stress is another main issue with fibro, try pain=poor sleep=stress. A wheel within a wheel. Sitting here to type is like a heavy task physically. Exercise is important, yoga has had to stop due to my shoulder. It is a feeling of being trapped at times. I take a mild muscle relaxer at bed time. That has helped with the flexing and cramping. I am suppose to start a water aerobics program with the arthritis foundation after several weeks of physical therapy training. It is all so very overwhelming. It took 14 weeks to have the two appointments with the Cellular Rhum. doc.

knee shots last thursday and for the next two thrusdays
got to set up the water p.t.
shoulder surgery on 9-7 (it was on the 30th Surgery was postponed by the doc.)
call on the rx for the infusion on 8-25
call my nurse to confirm
call the other surgeon on my wrist to keep them in the loop
Allergy shots 1-2 x wk

Take our bunny to the vet (mites)
Take our dog to the other vet (3 year rabies shot and exam)
Dash has on line school, we are trying to get him into a real good charter school
Dove is in Jr. High, special needs. Got to call her interventionist.

Life is full and days are often like a huge stream through a straw. Pain slowed me way down. Love holds me up.

Please pray for MILove her sister passed away.
her funeral is on the 30th.

A new school year

It was a good day today. Dash began his 6th grade year here at home on the K12 online. He had a really kind attitude. We got along well. Daddy Man told our son about my two hats. When mom has teacher hat on you respect her and treat her as you would a teacher. When mom is not teaching she has her mom hat on. Respect her as your mother. That he did today. It is hard for a smart child to listen an do things the way he should. His mind reasons his own way to do things, today he listened to the teachers reasons and respected them. Tonight at bedtime he even differed his thoughts to a "they must send us the books for a reason", in response to using the student workbook and not printing out the pages on the computer. He is a year older now and the maturity shows.
Our daughter Dove begins 8th grade in the morning. I have picked up another child to transport along our way. She is Doves' new friend. Nice girl. Her parents are suffering hardship and we pass her home on the way. Dove does not ride the bus I transport her daily. Busing here is now a real battle ground for bullies. That and a neighbor kid is very troubled and I fear violent.  She got her things ready. They are both asleep now.
It felt good to have a scheduled day today actually. After Dash finished all of his school work we went to shop for him. Some new tshirts and three pair of pants. He is skinny, we found jeans for $8 each! Gratitude for being able to get my children what they need impressed upon my heart a pleasant peacefulness.

We are so blessed. So many have need for supply, my heart goes out to those mothers who suffer the lack of peace. As it should.

Regarding our cars

After a kind comment on the car I realized that a wrap up on it was needed.
On the Saturn it needed to have the upper engine rebuilt. They got into it and found that it had been opened up before. We had been deceived by the man we purchased it from. Beyond the bent, cracked rods the inner head had been damaged before. They were able to machine it and replace the upper head. All in all it was $2400 to get it done. The mechanic gave us a $300 discount. It is now running great. Almost 35? miles per gallon. Just waiting to run this tank of gas out to measure the mileage. We only paid $3600 for the car. With it only having the 50,000 miles on a 1996 car it was worth saving. Kelley Blue Book at $3900 for one with over 100,000 miles on it.We thought of all of our options. Believing in staying debt free we chose not to get a newer or different car.
My Beloveds parents loaned us a vehicle for almost a month! They really covered us.

Our Honda went into shop during all of this to fix the grinding noise. It was a loose bolt! It had an alignment done that called for a part to extent the range. All of $300 got it home. It is running true and quietly. We are so happy to have found a wonderful mechanic that is honorable.

Highland Auto in Mesa, off of Country Club. I do not usually refer folks but this team is wonderful!

We will get back our savings if we work hard on budget in a couple of months. Being frugal and diligent living debt free is possible. Never give up on a life free of servitude to debt. It was a real hit to lose all that savings but it was there when we needed it. Job one is to build it back up again.

The Saturn and the Honda both get 30mpg. Both are free of debt. Both cost only $100 a month to insure them. Registration for the 1996 Saturn is $40 for a 2 year time frame. The 2001 Honda is only $75 for 2 years registration. Would I like a new car? Not at the cost of owning one. Having a car with low miles, that is only older in years is still a wonderful thing. The repair was high but not as high as to own a new car with the payment, insurance and registration. New cars go bad too. So all in all we are grateful to have what we have.

A time for all things

Two children sing in the background and at last I type a little. My daughter and her girl friend are singing. Imagine two voices sweet. A smile for you and me too. Daddy Man sits in the same room with headphones on. My tender heart son is watching TV.
It has been a summer of rest. This year called me into low gear and a tortoise shell grew over me. Tonight my head peeks out, my voice will exit the keys as stretching out of this quiet place begins. It feels like so much effort to just post.

 Daddy Man was honored on his day. We have the best dad, our family is held together in his love.

 Tender moments suffering humor what a grimace. Note to dad teenage girls do not want dad kisses.

 Dove turned 15 this summer. We had time with the Elders, she so enjoyed being with them. Teaching her grandma how to use an Itouch.

 This was perfect for her. She has been on a kick over owls. Her and one other girl went to the mall escorted my me. We shopped and this generous child of ours gave some of her clothing money to her friend. Dove wanted to make sure her friend had new outfits for school too. I could not fault her on it. She really wanted to do that as her birthday. This child has a great soul.

 We have had a few Haboos, major dust storms. The kids ran to put garden rags under the garage door. I did the same with all the exit doors. That is a wall of dust.

 Life in the desert can have some exciting moments.

Today after sleeping until 11a.m., cooking was done for the weekend. Spaghetti, frijoli beans, turmeric rice, pasta salad and taco meat. We had a fish fry of cod for evening meal. I made a chicken enchilada tray to bake tomorrow. Saturday is low peak pricing on electricity.All the eggs were time checked by placing in a water bath, any that float are tossed out. The jar of eggs cracked are for morning meal. We have an extra child today and tomorrow. Actually there will be a fourth one on the morning.

School starts next week here. Our son will do online 6th grade and our daughter will return to public for 8th grade. My life will hum with business and life will flow.

Last week an MRI with contrast (injected right into my joint) was done on my left shoulder. It is beyond the pain syndrome. It may have a tear in joint or tendon. Yep, surgery may follow. I try to keep my eyes up and feel the warmth of Gods love and my face tiers. Nightly muscle relaxer helps. Yoga stretching is very helpful. This week I was only able to go one time. Next week I hope to be able to do more. In two weeks knee injections will begin again. It can be an obstacle to climb over so much physical pain. I will carry on.
Maybe I'll stretch my neck out again soon.

You all be blessed knowing that God is for you and not against you.

Today had many sweet moments.

inside-the-teenage-brain

  
I found this wonderful article on the teen brain. It is a real education in understanding 'why'?

Make it from Scratch* Refried Pinto Beans*

This is a re post enjoy

I like using pure ingredients.
Now days here in the states our store bought foods have become polluted.
They put High fructose corn syrup in everything.
Whey, this was once the bi product of cheese a waste product no more.
The Oils are toxic.
So after investigation on my part reveled that they are not even using the "pinto bean" any more I had enough!
Oh and the expense to eat toxic (long term) food on health care!
Organics are pricey.

Empty a can (ease and speed of preparation) of "pinto" (or any other you favor) and rinse with running water.
Pick out any bad beans.
(you can even cook beans from scratch after soaking over night)
I had a little salsa left so I added some water too it and shook to jar
A 1/4 C of butter
a teaspoon of cumin
a tea. of sea salt
and a dash of cayenne.

I used my blender pulsing it a few times.

Walla!
Beloved raved! He said it was the best burrito I ever made!
Well I been making his burritos out of canned refried beans for years.
I think I will make them from scratch from here out!
Oh, Dash agreed!
I had some on rice it was wonderful!

Seeing good in all things.

What a full life I live. Rich with opportunities for gratitude.
Update on the cellular R. It was a wonderful visit! Often I am left feeling very embarrassed over the complexity of my health issues. The P.A. was so thoughtful and patient. Inch by inch we went over all the symptoms and the history. A good 45 minutes were afforded in doing this. After a while the specialist came in and he was really very insightful. Due to the holes in my immune system he is running several test on blood drawn right there at the site. He felt that fibromyalgia was a contributing factor but not the only issue. He said that most people are on a sort of continuum of it. For some we are so far over on the spectrum that we become disabled by the pain. So for now while the test are being done the sleep issue is priority. He gave me a type of mild muscle relaxer for bedtime. Yoga is to be done and stress is to be addressed. So for now I have slept two nights and feel less pain than what has been the norm. Sleep deprivation due to the pain makes the pain progress. I learned that the memory issues may well be a part of having fibromyalgia due to the PTSD. The stress disorder itself can cause the condition. Always having tense muscles.

I have yet to get my car back. The engine has a lot of work to be done. It bent the rods when the timing chain snapped. I will not see it until after Friday it looks like. $1300 to $1500 he thinks. Man that is a lot of money. Today I did the budget and last month I did not spend all of my budget so it looks like it will not be too bad of a hit. It is so amazing and wonderful how things work out. No savings or travel on vacations, but the money will be there to fix the car. No debt thank God! All I will owe them is to pay em and love them. We all owe but to love one another really. So I pray for the mechanic.

Yesterday I went to leave for yoga and the other car refused to start. Later speaking with Hubby, I went to start it and it lit right up. He had left a key that only works on the doors on a key ring. So I was then able to go fetch my son from his sleep over. When we got back to the house the car was over heating! Hissing and boiling over. The radiator cap had broken. Think on it...if it would of started I would of broken down across town. It turned out to be was a $7 radiator cap.
Once again God kept me off the hot roads and safe. It will always be my heart of gratitude that gets filled up. Even those small annoyances can be blessings. I was where I was suppose to be.

Saturday I had Infusion, it was uneventful. In fact I slept through most of it. No side effects however, just fatigue on Sunday.

I slept now two nights. YA! Unfortunately no yoga yet, but Thursday my nurse is joining me. The owner of the yoga studio asked me to bring in some of my jewelery to sell in her shop. Think on it, even a way to pay for the yoga. God is so GOOD! I will make works based on stones and the meaning of them. Just got to smile.

I remember many of you, and think of you often. My strength is better today as is my concentration. It is a wonderful thing to sleep. I am really gaurding sleep practice right now, and it is late I need to close.

May all of you see those little things so often overlooked, and remember that you matter. God sees you. You are loved more than you may ever know.

Trusting in Love

Rhumatology
I have been awaiting an appointment with a cellular specialist. After several weeks tomorrow is the day. I need to be checked out to make sure leukemia is not at issue. The myofacial pain issue is more likely I think.
I have been loosing the use of my arms. After several mri's that show joint issues that do not measure up to the level of pain that is constant for me this is the next step. I am not sure how willing I am to do any major spinal tap, muscle biopsy and the like. I know that this sleep deprivation due to pain has to be addressed. I am apprehensive to place myself in the medical arena again. It took them 48 years to discover the CVID with all that indignity I am just really not at peace
I need wisdom

If your heart is so inclined please pray for this project.
Thank you.
dance like I am full of courage

Protected and given all I needed

On the way to yoga this morning my car broke down. Ya know what that car coasted a good 1/8 th mile just up to an abandoned driveway that had a bar and chains across it. I was on a MAJOR street. Folks travel in excess of 50mpr. Just as my car stopped rolling I looked up to see two men in a big truck. They pulled over and pushed my car right into the driveway.
I took my yoga mat with me and walked the half mile home. It was so hot! Over 100* It was at 10am. I made it home just fine. It was a bit close to overheating for me.
A tow truck came and got me and we went to get the car. The traffic was so crazy fast. I stood on the sidewalk and signaled cars off of the right land. The tow truck driver was laying on the street! a car with a punk brat kid almost hit him. When I called on the name, that wonderful name. JESUS he just missed the man.
I was so happy to be in the rig and back on the way to the shop.
We found a wonderful, honorable mechanic and have used him a few time.

So I find myself grateful, at peace. Seeing how well I am taken care of. The car died within a safe walking distance. I had a travel cup of water with me and made it home alright. It is a wonderful thing to have a car problem and PEACE at the same time.

It looks like it might have been the timing belt. Whatever it is though I have beautiful peace.
I slept the heat off and cooled down.

Smiling at the present

My New Moto

In the midst of pain comes a swing. From the endless sleepless nights with each movement lighting a fire of mortality, to the focus of spirit to spirit she swings. The 'when will this end imaginings of leaving this frame' turns to a simple ' thank you for life' breadth. It is then the storm becomes rain. Oh that I dance in the rain.

Many years before motherhood my home was a safe house on the street (as it still is). All the neighborhood children came and visited me while I worked in the yard. One sweet child told a tale to me.

He was with his Grandmother on a trip to the grocery store. It was raining heavy. The Grandmother pointed out to the child a woman dressed in shorts, barefoot with an umbrella splashing in the puddles. "look at that crazy woman"; to this the child replied "thats not a crazy woman that is Mrs. J. (Donetta).

It is good I remember his story.
I dance.