It's Real

I love this video because I am reminded that I am so lucky to have fought for answers.  I never gave up when the doctors said, " I don't really see anything, come back in 6 weeks if you don't feel better".  I never went back because I knew they would tell me the same thing.  
      So, after all had failed, I went to an allergy/immunologist.  He changed my life.  He immediately detected my symptoms and within 3 months I finally knew the cause of my constant discomfort and weakness.  Common Variable Immunodeficiency.  My body doesn't make the antibodies to fight anything from cancer to a common cold.  Bacteria can live in my stomach until it dies on it's own.  Thus far, my levels are not low enough that I have been sick like others I talk to online.  I am still able to fight off a lot of nastiness, but in time, I will not be able to anymore. I spoke a little about it in my last post, so I won't bore you with the same details, but basically, my IgG and IgM are low.  My C cells (white blood cells) are also off in some areas, along with a random mono nuclear light chain.  The doc will keep an eye on this as it may be a super rare form of cancer (mylenoma), but it is highly unlikely.  I am so grateful for this doctor and so proud of myself that I pressed on and demanded answers.  

Diagnosis, Grief, and Joy

     I am keeping this blog active, mostly for my own therapy.  Although I might share the link from time to time, please keep in mind that is primarily a diary.  I am a very transparent person, and I won't apologize for that.  I am not seeking attention, rather just being investigative, reflective, and compassionate (which you will see more of in previous posts).   If I have shared the link to my blog with you, it is because I care about you and you care about me.  Just beware that I am honest and maybe sometimes overly emotional and even sometimes too straightforward for some.  
     So, just an update, I was in fact diagnosed with CVID.  Although some of my antibodies responded to the Pnemonvax23, there were enough antibodies that did not respond, which means treatment is necessary.  Treatment means subcutaneous gamma globulin (plasma) every 2 weeks indefinitely as I understand it now.  Thankfully, we have been approved for a 2 month free trial while we await insurance approval.  I should be getting a call from the nurse company tomorrow to set up the dates for in home training.   I found this picture of a general set up, however, I will have 4 infusion sights until I have enough gamma magic energy to lose more weight.  So multiply everything you see by 4.

     Luckily, my immunologist feels like he caught it early, because most people are much more sick than I have been.  Many are not diagnosed until they have been hospitalized every month, and are unemployed due to the extreme fatigue.  This has been difficult for my family, doctors, and friends to understand.  I don't look sick.  I am tired all the time, which can be mistaken for laziness or depression (which I also suffer from).  Sure I've had chronic sinus infections, but it must be because I smoke.  Over the last 9 years, since I experienced early ovarian failure, I have been to many doctors,  I explain my joint pain and muscle fatigue.  I tell them I have constant diarrhea and I am always exhausted.  They do a basic thyroid test, check my gallbladder, and run the routine tests.   Everything comes back normal.  It's all in your head.  Year after year.  I have seen a neurologist for electrocution sensations deep in my brain.  He sent me to an Ear, nose and Throat doc because he truly thinks I have sleep apnea and those sensations are due to over exhaustion. Sleep study is in 1 week. It was only 5 years ago that my weight started to skyrocket, my cholesterol and blood pressure was high for the first time in my life.  I figured it was because my life had become nearly stagnant.  I could get to work, do everything necessary for my family, and finish the evening coping the best way I know how.  I talked to my doctor about my alcohol intake, assuming that was making me sick.  I cut back, ate better, but working out was something I felt to be impossible.  AGAIN, I feel like a lazy piece of crap that cannot commit, and I'm pretty sure my doctors and even my husband thought the same way.  Snap out of it, Jamie!  You were a gymnast, you can do it. But my doctor just kept switching my anti depressants/anxiety meds.  We tried a diet pill, which had no effect on my appetite or my energy.   It had only been 7-9 years ago that I was going to school full time, taking care of 2 little boys, and working 4 (yes 4) part time jobs to make up for the child support I never got.  I had a wonderful boyfriend that helped both financially and with the kids, but my days ran from 6am- 3am for years.  I could not understand how all of a sudden I felt so terrible.   

       And then I met Dr. Pinna...

Auto immune deficiency, early ovarian failure, low thyroid, and posibly sleep apnea

Although I have been known to post way to much on social media, I have decided I don't care. I have people asking me left and right if I am okay...what do the test results say...what will you do next?

I experienced post menopause at 27.  I have been taking estrogen ever since.  Over the Thanksgiving and Christmas break, and even into last summer,  I started therapy after experiencing electrocution sensations in my brain. My joints started to swell, I gained weight rapidly, high cholesterol, high blood pressure, etc... So my gyno upped my estrogen to the max, and 6 weeks later, no avail,  Still post menopausal. He referred me to a neurologist who referred me to an ENT for a sleep study.  In the meantime, I saw an allergist/immunologist who discovered that I was allergic to nothing...but my 23 serotypes were nearly absent, meaning my body can't make what it needs to fight infections/viruses. My IGG and IGM are extremely low, my b cells are also low. B CELLS ARE A TYPE OF OF WHITE BLOOD CELL . T cells are also a type af white blood cell. These are also low. At this point, i would expect a bone marrow sample.  But we'll see.

Zebra Strong 2017

     So in 2009 ish, my oldest son randomly told me he remembered being in my belly.  He said all he remembered was his zebra blankie. I  found it especially odd because he never had an animal print blankie nor did I have any animal print in my home. I thought it was strange, but not impossible because I have memories of about a year old. Most people don't believe me, but after a lot of investigation, talking to family about the placement of furniture at that time, I realized I really did have those memories. Crying in my crib, I can remember the placement of the room.  I can remember where Grandma's organ was, that my crib was by the window with no curtains, and that my mother came to bounce me back to sleep in her nightgown. There was a small chair she sat in sometimes. I can still see the entryway where the door would lead out, and I still feel scared until my mom picks me up. Today my son tells me a story of being afraid to let go of the "zebra" blankie... without any prompt of talk of babies or birth.  He says he remembers the bright lights and trying to hold on but they (doctors?) were pulling him...but "softly" he said. (I had a c-section).  I have never told him the cord was around his neck as well as the fact that he was clutching it when they did an emergency c-section after 20 hours.  WEIRD.  I tried really hard not to have any expression on my face as he told me the story...I wanted it un-altered.  I got an honest recount of my son's memory of birth.  That is big information. Now, don't knock me right away, but there is some research that suggests that babies can hold on to memory, even as young as birth. It's extremely controversial, but not out of the ball park.  Childbirth is traumatic for the baby, even in a perfect environment.  Traumatic events can glue into our memory, usually not the real, perfect, and 100% account of the event, but traumatic events certainly stick with our senses...sight, sound, touch, etc...Whatever we feel is necessary to retrieve, our minds will give us enough. Call me a hippy, but I believe my son when he says he remembers, and I believe myself as well.  I can still hear my mother humming as she bounces.

_____________________________________________________________________________________________Fast forward 8 years from Nick's memory.  That post was done. No resolution needed.  Super cool if he really did remember his birth.  Completely forgot about it.I have been diagnosed with CVID, an immunodeficiency which does not allow my body to produce antibodies to prevent infection/fight cancer cells/do it's job, etc...I am still waiting on more lab tests to confirm and deny other coinciding  conditions.  Trying to stay positive here.In the midst of my research of CVID, I found this...ZEBRAS!  Zebras are the "motto" for CVID. It's probably coincidence, but I don't think there is such a thing.  I PERSONALLY BELIEVE that Nick knew I had CVID long before I did. CVID can be a slow moving, genetic disorder that isn't diagnosed until your 40's.  I'm a little ahead of the game. Maybe his memory is my first version above, a womb that resembles a striped uterus, and he may remember it that way.  Or maybe, my first born is as empathetic and sensitive to the senses and body energy as his mama, and held on to the zebra blanket memory for another reason.