Thursday, April 14, 2011

Thankful Thursday IVIG Referals

Good Morning
Yesterday I left my appointment for the CVID and IVIG with great news! After 11 months of monthly 6 hour  infusions of gamma globulin my goal of getting the levels over 1000 has been reached. This is the trough level goal or the lowest levels between infusions. This means that no longer will it be a certainty that infections would grab hold of me in a social setting. Although the risk are yet greater than the population at large it is no longer a certain life threatening risk. It means that the freedom of access without the fear of illness has been gained! This is fantastic news!
If it were not for the treatments my life would be at serious risk. Now I can breath both figuratively and actually. A mask still for if someone in my vicinity is known to be ill, or in large crowds but fear is leaving me. It has been a real torment and concern. Leaving this gregarious woman rather isolated and somewhat exhausted of life. Sad, lonely and mentally defeated. Now I smile once again at my future.
Even if the knee replacement come to be it would be able to be done without being a life threatening thing. YES one day a new knee. It is only due to my levels being stable.

Well now as he calls me 'a proactive patient' another patient and I will be trying to set up a local support network.
I remembered of how long ago when an illness or trial would hit, I would think that "this is not about me, it is about God being  glorified". Somehow in the midst of the last year I had forgotten that. So many trials that I saw an end to were easier to think that way. This was harder, for 49 years I had been ridiculed, harassed by test after test. Thought to have Alzheimer, and a myriad of other issues. It was so demising and shaming. That is what people go through. So if in that God can be glorified perhaps it is in this. You are never alone. There are others who like you. Those that just can not figure out why your so ill for so long.
When we suffer it really is about how we can comfort others . It did not feel that way going through this for the last 11 months. It did not 'feel' like this either all those many years of scare after scare. Primary Immune issues show up as many different types of symptoms that defy most physicians without the knowledge to recognize it.  If you know that something is just not right...NEVER let them make you think it is all in your head or that you must be making it all up for attention. I was treated that way even by family members. It is so painful. So encourage one another, as I too hope to encourage you.
Now that I see a light, it is easier to get out of myself and do so.
I had to grieve the betrayal of all those years. Felt real angry that 'God' would allow it of me. Felt real sad that shame had removed the dignity allowed me for so many many years. These things are a normal part of grief. As is the joy that can come in the 'morning' (mourning) of a thing.

Now for all you who suffer the ignorance and isolation gained for you here are some referrals gained yesterday at my immunologist. We who have CVID often have been told "it shouldn't" as if it all in our minds. Remember the problem is that the knowledge is just not within their minds to understand this rather rare problem.

Try these referrals...In Phoenix, Gilbert, Scottsdale and Mesa Arizona. Arizona Allergy and Asthma Institute.
First His ( Levente E Erdos, M.D.) strong statement of make sure
a physician is board certified immunologist.

this is the web site
American College of Allergy, Asthma and Immunoligy

Here you can find a listing of physicians you can help with Primary Immune D.
Sure hope this helps you who have asked for assistance.

Also the PIF (Primary Immune Foundation) is having it conference June 23-25 the here in the valley. Hit the 'Think Zebra' link on side bar. I am so hoping for a scholarship to attend. they have patient and professional lectures and social events.

1 comment:

Spider Lady said...

Hi, I came across something interesting today. An allergy called OAS ~ Oral Allergy Syndrome. It was called Latex Food Syndrome in the 80's. Basically your body can't tell the difference with some foods, and thinks that they are latex. I remember you stating before that you have a latex allergy so I thought of you.


Older women likewise teach the younger women...

• how to love their husbands
• 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

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When I say... 'I am a Christian' I'm not shouting 'I'm clean living,'
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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.

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I'm professing that I'm weak and need His strength to carry on.

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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.

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  • 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.”
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  • “Live so that when your children hear these words they think of you… Fairness Caring Integrity Honesty Love Trust.”
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