CVID-The Umbrella Effect

My Journey Through Diagnoses

2012-03-16T12:36:00.001-05:00

Having rare diseases creates many challenges. Stumbling blocks and brick walls you run smack into only to be turned around to do it all over again! Frustrating to say the least. And unless you are famous or world reknown, you are likely to be dropped off into the web filled cracks of our health care system. No where to turn, no where to lay your tired being. Terrified, worn out and simply hopeless.

Have you ever been so sick and tired of being sick and tired that you want to just give up on all the doctors, specialists and professionals? I have! But I suggest you don't. Be your own advocate and ask all the questions until you get answers! Make them work for you, with you, not against you or in a dictating fashion. Honey is sweet and kindness, expression of your fears or troubles will help guide them in the proper direction. Building a team rather than preparing for a fight.

Family that doesn't understand or who refuses to try to understand are huge problems, because we depend on them to help and pull us through our darkest hours. Don't be too hard on yourself or them. Realize that they may not be capable of understanding complex problems and if they request, show them a diagnosis and simply show them how to follow through on research. Trying to make them read or understand is only going to upset the family unit. So connect with others that do understand and want to help. Build your support system from the outside in. You will be amazed at who and what is available in your community and on the internet. And allow your family to help in ways that work for everyone. Maybe it's helping around the house or making a few frozen dinners, be grateful. Gratitude gets you everywhere!

My greatest obstacles are all the testings and unanswered questions to what it might be and what it might not be. Doctors who have told me these other doctors are smart enough to test, yet not smart enough to connect the dots to diagnose. Ignorance on that doctors part in my experience, because I found a specialist who understood the methods of testing and answers it produced. An Immunologist! Although I did fire my first and second Primary Care Physician, I found an acceptional one on my third attempt! These two have worked like a well made watch, in sync and step..... Not missing a tic!

It's been a long journey. Difficult and challenging along the way and have almost lost my life several times. I will discuss my many diagnosises in the next blog so be sure to sign up, comment and ask questions! I'll be checking back in very soon!

Help with COST

2011-08-25T12:11:00.000-05:00

Anyone who struggles with a chronic illness knows all too well how much it can take, not only emotionally and physically, but financially!

Is it not enough that we suffer with illnesses and worry about our families futures? What they endure? The stress that they are under? I have seen too many families fall apart due to financial difficulties. The straw that broke the camels back... This should be a time that families are strengthening their bonds, supporting one another and they do it the best they can! Until the bills pile up. The cuts in budgets, the financial burdens of the medications that loved ones need to simply survive.

I am listing a few places that patients can turn to for help in insurance premiums, health costs and yes, medications! Some of these places will not only help with the insurance premiums, copays, but might even be able to offer FREE prescriptions. There are also programs within pharmaceutical companies that can offer help.

http://www.help4seniors.org/newspage.asp?ref=1064

Understanding COBRA Premiums
http://www.familiesusa.org/issues/private-insurance/understanding-cobra-premium.html

Sharecare
http://www.sharecare.com/question/help-paying-insurance-premiums-copays

Patient Assistance Programs - Prescriptions
http://www.patientassistance.com/

RX Assistance
http://rxassist.org/

I am in no way shape of form promoting any of these companies or benefiting from any of these companies that I have posted. They are simply a start for people that need assistance. Just places that I have found during my search for assistance with the costs of my monthly costs of prescription/chronic illness management. I only hope that someone will find help or relief, maybe even just realizing that there are places that will help. You are not alone!

These are just a few of the websites that you can look into and maybe give you a head start in the right direction. Remember that many Pharmaceutical companies offer assistance to patients that enduring financial difficulties. There are also websites that you can find if you use your diagnosis as the key search word when searching or browsing the web.

I will work hard to add as many websites to my blog as I can that others can find inspiration, help or support. Emotionally, spiritually and financially. Please send me questions, if there is anything I can help anyone with research, I am here to help!

God Bless you all!

My Saving Grace - The Zebra Umbrella

2011-08-24T10:48:00.000-05:00

The Support Umbrella that I found at the IDF on the internet. I made many friends there that understood me. I didn't have to try to explain over and over again my anguish, they knew all too well and they received me with open arms! Just everyone who enters is received and offered all the information you could need or want on Primary Immune Deficiencies!

When I was first diagnosed with CVID, I searched for everything I could find regarding this disease that was ravishing my body and stealing the very breath from me. This is where I found a new kind of umbrella. An umbrella that would shelter me, no matter where, they were there... Zebra's. Beautiful, loving, kind, understanding, fierce and could also attack at any moment if needed! A strength I would grow to learn and people I would come to love and make life long bonds.

There is everything that you could ever need at the IDF, information even Dr.'s! They have committed themselves to bringing awareness and help to the world around us.

Check them out... you won't be disappointed! IDF http://idffriends.org/

My whirlwind with Chronic Illness

2011-08-24T09:26:00.000-05:00

A whirlwind is the only way I can describe what has happened over the past 3 years. It began with a headache that wouldn't go away, another infection, another fever with muscle weakness and relentless fatigue. After struggling with many doctors, tests, hospital stays and ER visits, most doctors thought it was all in my head and fluffed me off as a hypochondriac. I was even starting to doubt myself.

I suffered from many strange GI/Kidney/Lung and Neurological infections that couldn't be explained. I went through many misdiagnosis's, only ending up in frustration and Medical Burnout.... Hanging onto the mustard seed of faith, we pushed on, traveling to Mayo, searching for answers. Through hundreds of lab tests and a spinal tap, they always came up with the same answers, low IgG levels and high protein. What was this IgG? Why were they low? As my previous Primary Care Physician scolded me, stating I was over reacting, doctors were smart enough to test these IgG's, but not one was smart enough to know what to do with them... She was fired. On the spot, that very day. After all, I was going to need a doctor that cared enough to search for answers. Listen to me, believe me and follow through without questions or doubts, finding another who knew what to do with the low IgG levels.

After finding a new Primary Care Physician, I was sent to a specialist. Something we hadn't heard of before. An Immunologist. This is the doctor that specializes in IgG levels, their diseases and complications. Keeping things as simple as possible for us, my new doctor proceeded to explain. The Immunologist knew what needed to be done, he knew what to do with the low IgG levels and what they meant. We met, he took my history, spoke with me and my husband for about an hour and than he put together a plan. We will draw blood. Test against certain proteins and will call us when the reports come back. Really? You will call me when they come in and explain to me what you think? I wasn't sure he would follow through, so many had told me the same things before. Resulting in the same things over and over again, no answers, no explanations.

Finally, 2 weeks later we had an answer, on a Saturday even! The lab work was in, the test results were confirmed. "Mrs. Dawson, you seem to have a condition known as CVID". Let me try to explain, he said. "We have tested against 23 pneumococcal proteins and you can not make any antigen to any of them. You have low IgG, IgM, IgD and IgE. We need to begin treatment as soon as possible with Immunogobulin therapy." This was all overwhelming to me. I didn't understand anything except that there was a problem, it wasn't in my head and the wonderful man had an answer! He went on to explain as simply as he could and set up an appointment for me to come in that following week. As for me, I came home that day and began searching everything I could on CVID. I entered a new world and life would never be the same again, for any of us!