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!
Sunday, October 21, 2012
Wednesday, October 3, 2012
After my sweet man tore it apart and determined it was a goner we opt for a new one.
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.
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.
Posted by Donetta at 3:33 PM
Saturday, September 22, 2012
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.
Posted by Donetta at 11:59 PM
Tuesday, September 18, 2012
Posted by Donetta at 9:22 AM
Monday, September 17, 2012
SLAP Tear and Glenoid Labrum InjuryThe 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.
Posted by Donetta at 5:47 PM
Tuesday, September 11, 2012
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.
Posted by Donetta at 2:39 PM
Sunday, September 9, 2012
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
Posted by Donetta at 3:49 PM
Tuesday, August 21, 2012
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.
Posted by Donetta at 10:14 AM
Tuesday, August 7, 2012
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.
Posted by Donetta at 9:40 PM
Saturday, August 4, 2012
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.
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.
Posted by Donetta at 10:27 AM
Friday, August 3, 2012
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.
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.
Posted by Donetta at 10:11 PM
Thursday, July 12, 2012
Wednesday, July 11, 2012
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.
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!
Tuesday, July 3, 2012
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.
Posted by Donetta at 10:24 PM
Thursday, June 28, 2012
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.
dance like I am full of courage
Posted by Donetta at 11:23 PM
Monday, June 25, 2012
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
Posted by Donetta at 10:36 PM
Friday, June 15, 2012
It is good I remember his story.
Posted by Donetta at 12:24 PM
Thursday, June 14, 2012
With Fathers Day coming many stores are doing beef sales. Safeway was having a pretty significant sale. As I laid awake wondering just how I was going to grind the beef up I asked for God to help me out with it. Early morning visit to the store proved Him out. Walking up to me was a butcher and as he approched I told him how I did not want to clear his shelve of the meats. Telling him my intentions of grinding up the bottom round roasts he said that he had large 20+ pound muscles uncut. Telling him I was going to purchase at least three of them he suggested that he grind it for me. He was the manager of the department the head butcher. He assured me the grinder only did beef, that he would triple grind the meat and keep the muscles separate from each other! All these years grinding it on my own girls. He had it all ready in twenty minutes.
I thanked him telling him that had never been offered to me before. Telling him of how he was an answer to prayer and how I had done this on my own for 30 years, he said..."I love God too, I am a Christian". What a cool thing to occur. The harder part of the job was done for me. Dove helped me unload it to chill down while I went off to Physical Therapy.
Posted by Donetta at 9:58 PM
Friday, June 1, 2012
Dash has a room for teenage years to come. The dark blue sheets and new blue blanket ($5 at Wally's) All of his toys are sorted into the bins on the shelves. Steve and I found a full 8" mattress and put it on the top of the car to drive it home. What an adventure.
We have an extra kid today. Dash still has one of the old twin mattresses (to the right) and we were able to fit it on the floor. Good for sleep overs. The air mattress did not work for the kid was a bit to heavy for it. Makes me consider keeping it for sleep overs.
At last my car is back in the garage. We had the contents of my boys room out here. We found a family in need of the beds and the toys are all sorted now. We invested $160 and had limo tinting put on the back of the Saturn. The front windows are lighter for legal reasons. This car is so much cooler now. The AC cools it fast. Now that it will again be garaged for the summer the quality of auto transport will be greatly improved. Our cars here can get deadly hot inside when parked in the sun. They get heat soaked and take a very long while to cool down. When in a garage and limo tinted summer trips will be much more pleasant. So the 1996 Saturn looks like a cool car now, not a granny car any longer.
We have not taken many images this year. Perhaps it is the camera lack luster. The replacement is just not a clear image taker.
With the pain syndrome an issue my study into aromatherapy has taken more of an effort. Some used to help with stress, sleep and even pain. Through air and massage I hope to help myself and my family through the study.
My day began
Mom Muffins with egg, sausage and cheese. No Mayo for this one No egg for another. Apple juice, grape juice for me please. We have a mid day switch over for me to go to therapy and the kids to friends houses.
Speaking of friends, a good idea for summer is to have a list of phone numbers of friends for the kids to call. Then they can just independently reach out. Something I have not been very good about lately.
Life is good. Tomato plants are thriving.
Posted by Donetta at 9:33 AM
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."