CVID Hurdles Treatment

Today I am finally recovering from my last epidural injection in my back. I have needed this epidural injection since August. It is now October. Why did I have to wait three months to get this injection? It's because I have CVID and this placed hurdles blocking my treatment. CVID stands for Common Variable Immune Deficiency, a form of primary immune system diseases. All this technical stuff just means that I get sick. I get sick often, severely, and it effects everything; including be able to get my epidural injection for my back and leg pain.

In August I noticed that my last epidural injection was wearing off. I was told this spring that I should get them every 3-4 months. The purpose of these injections is to reduce the inflamation in the nerves near my spine that have been damage from years due to ruptured discs squishing and pinching them. The nerves that have been effective happen to cause havoc with my legs, both of them. My legs tend to give out, go to sleep, have holes in my feet, not be where I thought they were and, of course, give me lots of pain and difficulty walking. These epidural injections help eleviate the problems associated with the nerve damage by reducing the inflamation, thus allowing the nerves to send messages appropriately so I can walk- pain free.

The problem with getting my epidural injections is that I must be infection free and not on any antibiotics. My immuniologist also recommends that these injections be done shortly after my IVIG, intraveanous gamma-gobulin infusion, which I get monthly. These IVIG or blood infusion provide a supply of IgG, (gamma gobulin) that is an important part of the immune system that fights infections. So each month I have a short time frame of about 14 days or so that I can be scheduled for my epidurals, this is during the time when my IgG levels are at their best and I can fight infections better. However, that time frame just happens to be after a period prior to my IVIG when my immune system is weakest, with lower levels of IgG. It is during this time in which is usually when I get sick. And I did.

I came down with a sinus infection in September. My doctor put me on antibiotics for fourteen days. I continued to be sick, so he extended it another 10 days. Then the weather changed and I got severely worse. He gave me steriod injections and antibiotic injections three times. This infection continued to stick around. So I was then put on another antibiotic for 10 days. This was extended by my primary doctor for another 4 days. Finally, the infection seemed to be gone. My doctor informed my pain doctor that I was medically cleared to have my epidural injections. A week later I had my IVIG. I was so glad that I didn't get sick again. Now, a week after my IVIG, I have finally been able to get my much needed epidurals. Yeah!

But see, the purpose for this story is that this is what life is like being a Zebra. Having to bounce from doctors to doctors. Infections lasting forever with the slightest thing making them get worse. Not being able to get treatment needed, such as my epidurals, due to being sick all

the time. Not being able to walk, be free of pain, and unable to participate in activities due to illness, pain, or other impairments. Watching life go on day to day from your couch and bed. Coping with all the emotions that comes with being chronically ill. It's a tough place to be and you have to be a fighter at all times.

Today I am recovering from epidural injections. I can already feel the relief as my pain lessens, but still keeps me being very easy on myself. I haven't done any housework. I haven't cooked other than the microwave and bake-it stuff. I haven't walk my dogs. But I am thankful that my overall health is once again good and I was finally able to get the treatment I have been needing for months.

I hope soon to be doing able to do all kinds of things. In the meantime, my fellow zebras, hang in there! For those who help us Zebras, Thank you for not giving up. We need you so much. And

those who are just learning about CVID- I hope that this is a peek into what it is like to live your life as a Zebra.

Many hugs and best wishes!