Inherited Common Variable Immunodeficiency CVID and suffering

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

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

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

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

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

it is life however. . 

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

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

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

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

Primary Immune Foundation Conference

there was an fund raiser this was my offering a real lesson in diligence.

It was strung but I had to do the findings tearfully one handed in pain.

it sold

it was $20 a night for valet so I parked down in a lot after dropping off my bag at the door. A very kind young man came for me in an electric cart and took me to the lobby. when i got there it was a bit early to get the room
the clerk however seeing me cane with knee and wrist brace took mercy
he set me up into a different room checking in several hours early
see the number three, God and I have this little game we have played for ever His presence is reminded me in the three. over over and over this way for many a year

this was the type of conference rooms

no longer 49 i went over to the 50's and up very strange thin the first time your reminded of it

the first evening was a huge event

this was the 30 th year anniversary of the PIF. A foundation that began in someones kitchen. a dear woman who lost a child due to primary immune dif. she wanted to have a foundation where those of us with the rare disorder could affiliate and disseminate information to one day perhaps cure this thing

click to enlarge this is the information on the basic
my adaptive immune issue is mainly the B-cell issue with secondary low IgA issue

i met a wonderful woman who helped me get my heart back. she and I sat for a long visit in the lobby after we had met up down below at the conference.
I was walking (hobbling ) to the escalator and she came up and asked if I would mind if she walked with me. So funny she reached into her bag and whipped out a collapsible folding cane. We were so kindred a spirit. She too a seer really helped me get past the anger. Home again into my heart.

Suppose that why you see me here again.


this was the only money I spent a very expensive $30! breakfast to the room the morning of the infusion at the hotel. I did not need to use up any of the energy i had. the conference was almost two walking blocks from my room.

That was the most amazing bread!

click on image

that's the in room safe

pay per use refer and bar under it

NEVER touched it! $$$$$$$$$$

at the conference there was all the free drinks of my choice. soda water, juice any thing. even at night an open bar. Strange though to think of immune folks drinking. everything that would be found in my room pay per was at the conference for FREE!

 I have used the techniques that were on the bed to make mine now. The top sheet is under the pillows, blanket folded down at the pillows edge. Head pillow folded in. Throw at the foot. It is fun to get to see how the Ritz does it.

what a palace! the way the pillows were folded in made for a beautiful bed

It was a wonderful rest.
the last day with infusion and the nurse with me all morning i used a wheel chair to transport from room to conference floor. On that day a very sweet fellow gave me favor. He called and got me a LATE check out Sunday so I could sleep through the morning. I had until 1P.M. !

SATURDAY night the kids and Steve joined me at the gala event. It was so wonderful. This place NEVER left me hungry. EVERYTHING was included in my scholarship. The kids swam in two of the pools until they closed. They went on home that night as did I the next day late into the mid day.
Refreshed. The trip was so helpful in healing the anger left by the many years of misdiagnosis, torments and indignities. Most of us had experienced them who had late diagnosis.

Homemade sugar oil scrub

 Lately I have become much more grateful to have legs that work. Ones that have feet attached that work. Taken often for granted we forget the treasures they are. So to celebrate these gifts came sugar and avocado oil scrub. 1/2 cup grain sugar and 3 tbs oil. Olive can be used or coconut, use an oil that you would be willing to eat. That is what measure I use. My skin is alive and living oils will cause it to thrive.
Mix in a bit of water to form a moist paste.

 

 With the hand spun ceramic bowl I made some 15 years ago and a wooden spoon from the earth mixed I the creamed sugar and oil mixture. There is something about wooden spoons that make me feel close to this terrestrial peace.

 By spooning the paste and rubbing it the skin will begin to slough off. It will begin to ball up and turn crumbly. When it will rub no longer rinse. You will be stunned at the new silky skin. No lotion will be needed for days.

 When you look at the tub the evidence can be seen. The residue is no problem to remove. Real ingredients do not need artificial chemicals to remove. No petro based oils are used. In store bought items it will be a different story.

 Simply use a cloth and the tub will easily wipe clean. That is all there is to it.

 Last month for our anniversary I asked for new rugs for our master bath. I love the gray. Some day carpet of gray is the dream. Now I remain appreciative of the 20 year old pink carpet.

For a kind touch toothpaste shine for my ring.

Today was infusion. My nurse left just a few moments ago. Blessed am I so very blessed. We slowed this infusion down. Four weeks ago it did not go so well. With the knee injections, my pups death and all the other adventures in character it all caught up to me.

Today was a good day. We watched movies and enjoyed each other for six hours and those drops of sustain life came into my vein via the port within my chest. Needle insertion is getting better for the site is beginning to toughen up.

Dash is home from a sleep over and Dove will do a second night over. The morning was calm so nice on an infusion day to begin that way. Those morning have an innate layer of stress as it is. Raining all day the weather called for a cozy blanket and a good movie. Ned Divine and Nims' Island were the two we watched. She also asked a tutorial in food storage and preservation. So I gave her a tour of the freezers and pantry.

My nurse could be my daughter in a different life. She is the age one might be. What a gift she is . I find it so touching how she admires me so. I admire her so. Funny how we can often find so much beauty in others when beauthy is within the eye to find.

Resting is the call of the afternoon for me as well as hydration. This elusive woman thought to stop here to visit some. So many of you are in mind. Yet reclusive seems be me these last few months.

There have been several profound items come to light of recent. 

One is that after years of wondering, years of trying to figure out...this calls for another post.

Scholarship letter to attend the Primary Immune confrence

In June here in Phoenix is the conference for the Immune foundation. It is my hope to attend. The scholarship covers almost $700 in costs. The other entry costs are not covered, another $150?. What do you think? I have never written a letter like this.

Read more HERE at the Immune Deficiency Foundation about the upcoming 2011 conference in Phx AZ

Hello and Good Morning

It is with a grateful heart that I received this request for an application letter to attend the upcoming conference here in Phoenix. It was so strong in my heart to attend the conference but I saw little way to make it so. With a very tight budget two wonderful (adopted) special needs children (10 &13) the idea of getting off to tend to my own health needs seamed out of the question. My sweet husband so wants me to attend and has expressed full willingness to do to my tasks if I were able to go. Even in that however the added loss of his hours along with the cost wold just make it all too impossible. So I let it go, asking a prayer if there were a way dear Lord to make it so.

I received an email this morning encouraging me to make this effort to request a scholarship to attend. With the scholarship the loss of income could be weighed as a good cost and investment toward good health, affiliation and encouragement.

I was diagnosed almost a year ago. With CVIG IgA deficient. A more complicated issue I understand. A nurse met at the physicians office the first infusion due to the threat of aniphylactic (sp?) shock. The vomiting on that first infusion was rather scary. Since then she has come to my home monthly to administer six hour infusions. I am blessed she is a  wonderful nurse.

My diagnosis came at 49 years of age. Years of medical folks saying "It shouldn't" to me as if it were all in my mind. Sickness kept returning over and over. Years that came to a definitive point when anti biotic were at a twice a month necessity. With the kids health pulling strong and now after years of the intervention for them my health had even suffered more. Stress is an awful foe.
Last January my health was so bad. Within a four month period pneumonia and then bronchitis three times.

I thought I was dying. Truly I learned I was slowly dieing.

In late January my eldest sister and I were on the phone her taking her last breath in a hospital bed. She died of issues so odd that hit her all her life. Same thing was told to her year after year. "It shouldn't'' My niece held the phone to her ear and she passed away hour later.

I went to the doctor for my appointment's the next day or so. Telling him of her death and my fear. He looked at me funny and said he needed to run a few tests. The most amazing thing was that after 49 years of suffering he found it! He studied at a university that specialized in PI. He saw it. In my dear sisters passing I was given a chance for life. This a gift.

Infusions have taken some numbers of IGg from 28 on one line (of the lab results) to over 1000 in 11 months. My lymphatic system is almost to a low average range, it was gone. I had gotten very close to death. Now I turn 50 this year. My dignity restored. Now it is a resounding 'IT'S NO WONDER! CVIG caused so many issues all my days. The medical field was ignorant to discern it.

With the IgA thing little information is out there. I especially noticed the lecture on that topic.

My veins began to blow out after only three months. ER's for stroke scare over and over due to tiny , very tiny veins.  Now I have a new port with a few complications. Strange to have this thing in my chest.

It is my utmost desire to come be with those who would cause this obscure experience to be less so. To sit and share a cup of coffee and be a part of those who would so identify and understand. To sit at the feet and humbly learn from those who have walked this path. To no longer feel as if I am walking it alone.

Thank you for your consideration
Donetta Jonas

So what do you think?

ivig in new port

hi
infusion went real well. so much less drama and pain not having to poke my arms. It is so much better!
i was too dehydrated however and been with nasty head ache with the old wet noodle weak effect. Right after the infusion I had a good hour of the ol' Popeye effect. (strong man cartoon of my youth). He would eat his spinach and become invincible. Tomorrow is another day.
I am making a collage if elements of gemstones. It is so fun.
Sewing a quilt, a dress for me and one for Dove. That and all the too many tasks that accumulated at months end due to the ivig wearing off after a month with just too many stressed day with the surgery . I look forward to this next month.

I learned that it take approximately 50 units of donated blood to make up one of my gamma globulin infusions.
one person can not donate more than 2 units at a time but that is very uncommon.

now I only use the white cells yet even so...that is so amazing to me.

My nurse is so awesome! As is my little family. We had an extra child today so the house was a bit too noisy. All in all I did well. The kids were entertained with each other. Pray for this little kid she is in the dragons net. This is her safe house. I told her so today that if she ever needed a place to live we are here.
At one point she walk through the room I was in and said ' I love you Mrs. U.' It was so sweet touched me with her deep sincerity.
Well my head is propped up and so it is time to just bless ya all. Good night.

Primary Immune National Conference

click on title for more information

Today in an icepack chilled box came the gift of life to me. It is wrought by many who were so selfless as to donate the Blood to create it. I found myself holding it up to my heart; the bag of ivig solution. A washed blend of many who together spun for me a healthy chance for life.

It has several times been pointed out to me how expensive it will be to keep me alive if we should or when we might choose to have Steve retire. Every time this falls upon my ear it stings my heart. Being able to share that pain tonight with my Beloved Sweet Husband brought me to weep. Wept I for any inference that my life be simply measured by the dollar sign. I have at times done my best to save face by responding...

'If we run out of funding I will simply stop the IVIG and pass away as God designs'.

How angry after that I became. 

That is before my eyes without anyone bringing it up.

God is our provision. Trusting HIM for my life and my death is our choice. He has NEVER failed us in that. My husband would never ever even imply such a statement to me. He knows how to guard heart. It is also for me to guard heart. Stress is a huge enemy not only to my spirit and soul but even more so to my body.  I will avoid as much of it as possible.

For today and tomorrow, I will hold that bag of gold without the guilt of any one thinking my treatment, my life...is to expensive to keep. Or may someday be so. The many many people who donated their blood to keep me and others alive did not think so. Neither will I. I will embrace that IV bag as I would those who gave the gift of donated blood. 

This will be a new day where I will no longer feel guilty for needing IVIG.

I learned of this conference in June. Perhaps we might be able to attend. It would be good to be with like minded and learn as much as I can about all of the process of living a healthy life with a primary immune disorder. The conference will even have a lecture on the very type I have. No IgA.

IDF 2011 National Conference

It will be held here in Phoenix June 2011

Easy Online Registration Available NOW!

for adults

the lower one is for kids and babies

Surgery for Port

Let me preface this 

with a big 

I am so blessed!

The doctor and I have been researching some different options for me. We were looking into a process called sub-cutaneous but with low IgA levels I am not a candidate. It is a relatively new process as well. I If I tried it the likelihood of shock is there and it could cause my body to build more anti bodies to IgA. Not good.

Today was set an appointment to go to Good Samaritan Hospital Wednesday morning. My sister will come here at 6 a.m. We will have a long distance to travel but this fellow is a specialist in the field that has done many port insertions. I will have a device set with a catheter under my clavicle (upper chest). It will remain there most likely the rest of my days.
The port will ease the difficulties faced due to several sticks at every infusion. My veins are being blown out. I may even be able to numb the site before the nurse gets here.

It took me all day to try to find a specialist to do the port at the end of it all(after I finally found one)

this organization 

was stumbled upon.

I feel worn out just calling all the numbers of insurance, doctors and all. the coordinator was stunned that I got so far. God is good. After a $100 deductible it is covered at 100%. God is good. So blessed am I to have such awesome insurance. There is a very remote (not heard of except in children) chance that my body will yet be able to be free of the need for infusions. I can still hope. Even so it will be at least two years of monthly infusions. The port will make it so much less stressful. Infections are yet the greatest concern. There will be a 10 day no lift from the upper body thing. It is out patient.

 Here 

is a site that shows the process of how my IVIG will be given here after. It will be done at home still. I will have the same awesome infusion nurse. I feel a little worn out and tired. To have gotten into an appointment for the day after tomorrow!

In this week of life

concert

 Last Friday evening our dear son had his concert for orchestra, He is center back of image. We were so delighted the Grandparents were able to attend. All eyes were on our sweet boy that it was a little over looked on the same evening that Dove announced with the humility befitting her that she had won Student of the month at school.

Monday gave way to my son getting ill and staying home. He went to the (our) doctor. He had a viral infection that was clear for him by Tuesday.

However I was coughing yellow by Tuesday night rather ill again. Arg! it gave way to illness for me and antibiotics. The viral struck me with a bacterial bronchitis and sinus infection. Fortunately the doc on Monday gave me a RX for a 'just in case over the holiday' measure. I started it by Tuesday night, with orders in next day.

Wednesday was his first day of leave. Daddy man is now on a mandatory (said with a grateful affection) leave (paid) until after the first of the year. He had his review and it was awesome. It looks like he may be returning with a raise and a possible promotion. He was a huge part of a very successful job shall we call it. So he helped bundle the kids to the bus stop and giving me the 'sit down rest order', into the doc before lunch. We caught it before phenomena Ya! if it had not been for the forethought to get the Rx on Monday It might not of turned out so well.

Wednesday mandatory rest for 48 hours.

Tell the courts that . Not even 18 hours latter it was Thursday 7:30 a.m. to the court to testify. Got there and the whole thing... It had been postponed and right home I came and rested as much as able. We all slipped through the cracks that the next morning early was doves award ceremony. The Grandparents truly gifted her and us with the arrival there at 8:45 in the morning.

Friday morning was the awards for Dove

Dove

 Totally unexpectedly Dash had his name called too! 

Non of us knew about it.

Get this Dash is distraught for another child got a letter but was never called up.

Dash got no letter and was. 

He feels terrible so much so that he is praying for this little girls heart and not really able to accept the award very well at all. He feels it is hers. My boy showed so much character that He deserved praise.

 My attendance was in a warm vest and coat with a mask on my face and straight back to the car and home to rest.

The kids had a half day so daddy man had to do the last minute shopping with me. We were a good team. With his help pushing the cart we were able to do the shop. $400. I got $185. of it for free. I used an online Safeway tool and extra coupons buying mostly lead in adds. Got Christmas shopping done for the meal and for the two weeks all the family will be home together. It was so fun to show him my process.

the kids had a lot of fun shaking the wrapped packages for 15 minutes until we got back.

Saturday...

We were up very late tending to a medication expiration on the anti nausea medication to do the infusion this morning. An on call doctor found us an alternative medication they use for chemo patients. Steve got home at 1 a.m. with it. So an early start today at 8a.m.

It was another real hard start. My body refused again to let the catheter enter the vein. The stick is good but the valve shuts right down, over and over this time third try worked. It would not however let the blood back out to do the blood draw. Another stick with a hard needle draw leaving the other arm very bruised and pained me to the point a holler and I got angry! The blood kept stopping and there were many many vials to get the hard way with that darn needle digging at me. When I got mad the blood let go and started to flow fast! real cool the way it did.

My PTSD is causing the body reactions. We are trying all sorts of things. Music, prayer, trying to visualized another place to go. That was when it was with a large bore needle that the catheter stayed. I was listening to Irish music and tried to watch seagulls fly over the rocky coast. It was so hard to ignore the pain but forced myself to stay there and it just at that instant let it in! It was a horrible place but it was in. Just above my right thumb.

My nurse is so wonderful. She said she is learning so much about the spirit body connection with me. I laughed and told her that "I had a ministry to the medical profession", and that I was non to happy about it at that moment. :) She has never had another patient whose body pushes out the catheter. I may have to consider a implanted port. Surgically into my upper chest. Steve and I are trying to deal with that and pray about it.

So anonymous ivig gal if your reading. Our journey is unique to our own. Yes it is easy dear ivig for so many to have their ivg treatment. Each case is it's own. Wish it was easy for me like it sounds like it is for you. Your very blessed, never take that for granted. I am very blessed too.

Only three iv sticks today and one blood draw stick. Beats the 5 iv sticks last month. Tiring my mind and it is really getting hard on my husband to see me suffer it.

During the infusion the ceiling had a funny black spot on it....Termites!

Little too much for the Daddy Man. Please say a sweet prayer for him if any one is out there.

I know I am not commenting back or email I am sorry. Just feel so little uplift to speak. I would never want to be a Debbie downer to ya. So many years it was I reaching out with supportive kind words. I am trying to reach out really. It just feels like I have so little left of me.

However good news as strange as it might sound. I have a fever tonight. First one in a long long time. An immune reaction to the bronchitis! U HOO   I can not remember the last time I ran a fever, never do. Chills and all but never been well enough to fight it off with a fever.