Thank You

Almost two years ago I was diagnosed with an illness called a primary immunodeficiency. This forever changed my life, identity, dreams, and abilities. I am extremely thankful to have a diagnosis finally after years and years of sickness, but, unfortunately, there is still no cure. However, with blood plasma infusion treatments, I have been able to experience a better quality of life at least. After all the steroids and antibiotics, that are now, thankfully, minimized; and I feel like I am becoming a healthiest I can be, despite my illness and limitations. This is what donating blood, whether it be whole, plamsa, etc., does. It saves and changes lives. It's been a lifesaver for me. I think the picture comparison speaks for itself. If you have ever donated blood, THANK YOU from the bottom of my heart. If you haven't and are able, please consider it. It's an invaluable gift that I am so thankful for.

Happy Rare Disease Day!

Happy Rare Disease Day!  Please share to support awareness of people who live every day with a rare disease.  I myself am one of them.  I have a condition called a Primary Immune Deficiency.  For more info, check out the Immune Deficiency Foundation​ at http://primaryimmune.org/.  Thank you!

Did you know that there is no cure for PI?  The standard treatment is immunoglobulin replacement therapy which is IGG antibodies from blood plasma donations.

Want to help?  Donate blood plasma.  There are donation centers all over the United States and the world.  Find the one nearest you at donatingplasma.org.  It is always needed, and usually you are paid a little money for your time.  You can also donate to the Immune Deficiency Foundation (primaryimmune.org) or the Jeffrey Modell Foundation​ (info4pi.org).  Thank you from a person whose life is touched every day by your gift!

In Sickness and Samba

Sometimes life throws us curve balls we never thought we would have to deal with, yet we find ourselves seemingly thrown onto a different path.  After a long journey of on and off illness, having a diagnosis of primary immunodeficiency was only the beginning.  My immune system is partially missing and not working right?  You wonder, how can that be?  I never pictured myself being diagnosed with a disease for which no cure exists.  I never pictures myself being my own nurse and having to give myself blood plasma infusions every six days for the rest of my life, or until a cure exists.  I never pictured myself as a person who would need to spend years on antibiotics to function "normally."  I never pictured myself as a person who has to take a ton of daily medications.  I never wanted to be a sick girl.

At least treatment does exist.  This treatment relies on the generosity of other people.  The thought that blood donors keep me alive and healthy every day of my life is a astounding thought sometimes.  I am touched by the generosity that gives me a chance at a quality of life.

It's funny how perspectives and life goals change when health becomes your main goal, your job.  While I'm never where I want to be, I finally am on a path to where I feel like I can have health, maybe even not require daily antibiotics to prevent an infection, the bane of my existence.  Sure, I can turn to my religion and social network, change my diet, exercise now that I feel better with treatment to have the energy to do so, get more sleep, try not to stress.  The list goes on and on.  However, of all things, one thing has really attached itself to my heart and helped me physically and mentally.  That, of all things I did not expect, was Brazilian Samba.  The music, sure, but, most of all, the dancing is where I have found sanctuary.  It has given me a gift of an outlet, a community, friendship.

What is your Samba?   Find something that you enjoy, that moves you, and stirs you from within.  Don't shelve it and put it on the back burner to get to someday in the future.  Do it now, and do it with all your heart.

IVIG Versus Sub Q IGG Therapy for Primary Immunodeficiency Patients - A Patient's Perspective

After a little over a year since my diagnosis, I am learning each day how to deal with this disease.  One thing that I thought might be helpful for people who are just starting out on IGG treatment was to list out my experience with the two types of therapies.  Please remember this is not medical advice.  It is just based on my experience from my own personal treatment journey.

For those unfamiliar with primary immunodeficiency or IGG therapy, here is a quick rundown.  For more information, please check out the Immune Deficiency Foundation (primaryimmune.org) or the Jeffrey Modell Foundation (info4pi.org).

1.  What is a primary immunodeficiency?

Primary immunodeficiency diseases (PI) are a group of more than 200 rare, chronic disorders in which part of the body's immune system is missing or functions improperly.

2.  How is it treated?

The typical treatments that I have had is antibiotics to clear existing infections and immunoglobulin therapy to prevent future infections.   This treatment is lifesaving for people who have an antibody deficiency. Immunoglobulin consists of antibody proteins needed for the immune system to fight infections.  It is taken from blood plasma donors and pooled together to be given to people who don't make enough on their own.

3.  What is IVIG?

IVIG is immunoglobulin therapy administered via IV.

4.  What is Sub Q?

Sub Q is a term used to immunoglobulin therapy administered under the skin (subcutaneously).

Now forward to the pros and cons of each!

IVIG Pros:

-It is a less overall monthly time commitment (often every 3-4 weeks).
-It gives you a bigger boost of energy when you get it.
-There is no need to learn how to do it yourself.
-It is good for if you have a fear of or just cannot stick yourself with needles all the time.
-Easier to travel without hauling all your infusion equipment with you if you travel between treatments.

IVIG Cons:
-It has more side effects (i.e. headache, nausea, feeling bad during "processing time").
-There are more "highs" and "lows" due to getting larger amount of medication all at once.
-My insurance approves IVIG for a smaller time period than Sub Q, so there is a need to deal with approvals more often.
-Scheduling can be a pain. It can be difficult to coordinate a schedule with a nurse for a period of 5 hours every time you need your medication.

Sub Q Pros:
-It is very convenient in that you get to schedule your own time when you do it.
-You are the nurse. You get to do it yourself and have control over how you do it and how you stick yourself with needles.
-There are less side effects, less headache, nausea, recovery time after infusion.
-There are less "highs" and "lows" due to getting the medication in smaller quantities more often.
-Insurance seems to approve Sub Q for a longer time period.

Sub Q Cons:
-It requires more of a time commitment through frequent infusions (weekly often, I've even heard of people who have to do bi-weekly).
-Not good for someone with a fear of needles.
-Have to learn how to do it yourself and have a nurse train you.
-It is harder to travel with hauling all the infusion equipment.

 When choosing what kind of therapy, it really comes down to what is best for each person. Whether on IVIG or Sub Q, you are still getting a life-saving temporary immune system to help you live life to the fullest. It is important to be grateful each day for it. The blood plasma donors that make this medication possible are saving the lives of people with primary immunodeficiency, that that is priceless.

Want to help?  Donate blood plasma.  There are donation centers all over the United States and the world.  Find the one nearest you at donatingplasma.org.  It is always needed, and usually you are paid a little money for your time.  You can also donate to the Immune Deficiency Foundation (primaryimmune.org) or the Jeffrey Modell Foundation (info4pi.org).  Thank you from a person whose life is touched every day by your gift!

Waiting...

Sorry for the delay in updating, but between in-laws visiting from out-of-country, home construction, wedding planning, and a wedding, like has been crazy!

Well, it's official.  I've been approved for a trial period of IVIG and have started it.  I am still having sinus infection problems and am requiring medicine for that, but at least I have started it.  Although I was lucky to only have a few weeks, from diagnosis to first treatment, I feel like I have been waiting for years for this to happen.  Sometimes, it's really hard to deal with life when there is just too much happening all at once.  That would be the simplest way to describe my life right now.  Even when you are strong of character and feel as if you have the ability to handle a lot, we all have our limits. While I am very thankful for a diagnosis, for an answer, about what is going on with me, I also feel very impatient in waiting for the treatment for that to start fully working.  While I know no treatment is guaranteed, you don't know until you try.  While I have been living with this unknowingly for so long, when you finally do have an answer, you want to get everything jump-started right away.  You are anxious to begin a new, hopefully better, quality of life.  For me, I love to be out in the world and to be active.  Having an immune disorder has been, in some ways, very draining on a person's spirit.  The fatigue accompanying this disorder really impacts a person's quality of life, especially when being less active is not who they are.

The Monkey Wrench

I recently have been dealing with a new monkey wrench that has been thrown into my life.  While I am glad to have an answers, it is also annoying in a way because it is just another seemingly long road to travel down.  When searching around the Internet looking for information on this new monkey wrench in my life, I came across a blog that really hit home for me.  Check it out:

http://www.hormonesmatter.com/coming-out-of-the-disease-closet-the-challenges-of-chronic-illness/

While not about my specific illness, it addressed the issue felt by many people living with chronic illnesses.  The blog called for people to come out of the disease closet and share their experiences.  I think that it makes a very valid point that illness is something that should be discussed, whether it be for support, information, or knowing that other people struggle with the same issues.  So, I am coming out of the disease closet.  I'm done not talking about it.  Here is my story.

For those of you who don't know, I have been struggling with my health for about the last ten years.  It is a long story, but let's just say it has been an up and down journey.  I have been lucky to experience periods of some good health, in which I will go go go in order to take advantage of life in the fullest.  However, those have been joined by many periods of sickness.  When you have a sinus infection that won't go away or have trouble breathing, you can be quite miserable, but you truck on because you become used to it.  I always wondered why I got sick so easily.  I seemed to always catch every cold or flu that came my way.  Those colds and flus would linger longer than anyone else and then morph into sinus infections and asthma/allergy issues that would require steroids and antibiotics to overcome.  I am allergic to pretty much everything, and asthma aggregated by those allergies is also a companion of mine.  I am on pretty much every inhaler, nasal spray, pill, nasal wash, shots, and even a biological medicine for my allergies and asthma.  I like to joke that I am a walking pharmacy.  Yet, despite all of these medications, I still find myself struggling.  In the past few years, I have endured a couple of sinus surgeries as well.  After my last sinus surgery this year, I am still having problems with sinus infections that won't go away.  I have spent most of the year on antibiotics.  I am tired of drugs, especially steroids, which, to those of you who are not familiar with them, have some nasty side effects including uncontrolled weight gain, mood swings, and insomnia among many other things.

While some of my friends and family know what has been going on with me the last few years, many do not.  For some reason, when people have a health problem, they tend to want to keep it a secret.  It is almost as if it is a shameful thing.  It can be particularly hard when your outward appearance does not show your chronic illnesses.  I don't want to deal with people telling me "well, you don't look sick."  That is the absolute worst thing you could say to someone with chronic illness.  Just because someone doesn't look sick, it doesn't meant that they are not sick.  I have always not liked to talk about what is going on with me too much, but I think I want to change that.  I'm finding that it is important to not be afraid of oneself, and I am finding that it is not healthy to not talk about illness.  I didn't choose this, and I most certainly did not want this.  However, this is the hand I have been dealt and I will make the most of it.

I was recently diagnosed with a primary immunodeficiency disease known as Specific Antibody Deficiency (SAD).  The road to this diagnosis has been difficult and long because my deficiency has apparently always manifested itself through my allergies and asthma.  I am familiar with the experience of having a chronic illness.  I have always had allergies and asthma throughout my life, but, in my late teens, my health in this arena took a turn for the worse.  I kept adding more and more drugs to my daily routine to stay as healthy as possible.  Basically speaking, our immune system has immunoglobulins that play a big role in protecting us against infection.  People who have SAD can mostly produce normal immunoglobulin levels, but lack ability to produce some against types of organisms that cause upper and lower respiratory infections.  The result?  Massive amounts of sinus and respiratory infections.  My having allergies and asthma only aggravates this problem.  The treatment for this condition is usually what is called IVIG, or Ig replacement therapy.  I am currently in the process of seeing if my insurance company will approve this treatment, as it is very expensive.  While I know that it is not completely guaranteed to help, I have a lot of hope that it will.  I am looking forward to a better quality of life.  Most of all, I am thankful.  I am thankful that I have answers, that I can look forward to better health, and, most of all, that I have a wonderful set of people around me.  I couldn't have asked God for anything better in this life.