Life Changing Lessons

ou never know, one day, this, or another medical problem will end the old life as you know it. Believe it, or not, the new you, will emerge

When your first diagnosed with a “chronic” illness, life sure does change. I’m not just talking about the everyday illness. I’m talking about you really face an uphill battle when it comes to the medical institutions, the insurance companies, and figuring out where and what all the new terminology  means. In all honesty, I was quite alone in this. I have always been a research nut. However, there were so many new, to me, vocabulary and scenarios. I had no advocate. It was quite the ordeal. Of importance: Do not give up! You have come this far, to turn back now.

Believe it or not, many primary doctors have not heard of this diagnosis. Specialists turned me away, telling me, that I was to “difficult” a case (yes, it’s in my records). I had no idea where to begin with getting my treatment, I was turned down, and turned away, and sent on many a wild goose-chases. I spent countless hours on the phone (Tip: Document all calls, date, time, contact and content), all in the attempt to get treatment. If your ever in my shoes, and you have BLANK Health Insurance, if you can get rid of that God awful insurance, do so now. You never know, one day, this, or another medical problem will end the old life as you know it. Believe it, or not, the new you, will emerge. That’s left probably for my treatment blog, so I won’t bore you any longer. Life sure does change, in a lot of ways.

Through the process of the last year, I began doing specific research, not Google, or Wikipedia, but real, research backed by National Institute of Hearth, and other various, well versed entities. A leader in the field of CVID is Charlotte Cunningham-Rundles, I was able to hear her speak briefly at one of the national conferences this year. She is eloquent as a speaker.

Click on the link below for further research from Cunningham-Rundles:

Cunningham-Rundles, C. (2010). How I treat common variable immune deficiency. Blood, 116(1), 7–15. http://doi.org/10.1182/blood-2010-01-254417
How I Treat Common Variable Immunedefeciency  Cunningham-Rundles, C. (2010)

Challenges of Being a Parent With a Chronic Illness

All I ever wanted was to be a mother. And I can’t even do that right. It’s another loss in a string of losses. Challenges of being a chronically ill parent. Part One

“I am a bike rider. No training wheels”! Mom missed it 🙁

>Part One: Originally blogged: 10/25/15

My youngest, recently learned how to ride a bike, I was not able to see or teach her. She recently had a fall party at school. I always volunteered at school, until the CVID diagnosis. Schools are germ factories. I did not know how to tell her I would not be there to volunteer.

I did.
She accepted it.
After one year post diagnosis, I guess she is beginning to stop asking.
A poem that captures my feelings everyday…applied to my guilt and sadness of being a parent that has a chronic illness.

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Parent Continue reading “Challenges of Being a Parent With a Chronic Illness”

Blogging and figuring this out

October 23, 2015

Thinking creating a blog was a good idea, for many reasons, At First. Appears there is a lot of techo knowledge I truly don’t understand. Not even sure where this particular post will land, if it posts at all. I’m really not sure what a blog is suppose to contain. I’m not selling anything. As appears many bloggers do. My goal, is to give the information of a rare disease, CVID. However,  glimpses of my daily “grind” will also be included. I’m also hoping to create awareness, and leave a legacy for those who love me. I have so many ideas, categorizing, and actually writing them will be an ongoing process. Please bear with me, I’m just updating a tad of the last few days.

My beloved and ever faithful furry child, has been pretty sick. She is a 15 year old Bichon, name Sadie. She has a big responsibility taking care and being the great companion she is, to my now 9 year old, and 5 grandchildren. She grew up with my 3 oldest children. Of course, this was a scary ordeal when she got sick.

i discovered my distrust of the medical field, carried over to the canine medical field. I questioned their reasoning for tests, their probable diagnosis, and so forth. Reflecting back on this situation, yep, safe to say I question the medical field and for good reason. Long story short, our pooch has a collapsed trachea, but will be okay.

Allso, had a visit with my clinical immunologist (when one has CVID, they must have a clinical immunologist, as they have the additional training needed to address these diseases). I will see him in three months, as he says that I have a lot of other medical problems (I do) and he feels better if I see him sooner after I get any results—-IF I get any results. I’ll post further, when necessary.

I am starting a second round of antibiotics for a raring sinus infection. First course, surprisingly did not work. I say surprisingly because this particular antibiotic would clear up an infection in an elephant. We are trying another one, maybe it’s a different bacteria, or God forbid my go-to antibiotic doesn’t work anymore.