Headache

This is actually Waterlily but no matter what email I sign on with, I can't get to my personal account moniker.

Hypogammaglobulinemia describes low levels of immunoglobulins in your body. Immunoglobulins are antibodies that fight germs like viruses and bacteria that can make you sick. Having low levels may increase your risk of infections and other diseases. Antibiotics, immunoglobulin replacement therapy and stem cell transplant are potential treatments. I get Chemical Asceptic Meningitis whenever I get an IVIG Infusion. I have very low IgG1 and IgA's in my blood. That in turn creates almost untreatable Pneumonia, Bronchiectasis, cancer, and organ failures. There are only two immunologists in Minnesota. Fairview University of Minnesota and Plymouth Minnesota. I got IVIG infusions for years without issue and then one day I started getting Chemical Asceptic Meningitis within a day or two of IVIG administration. After not taking any for 5-6 years, I tried it again. The first infusion went well except for a little headache. The second required emergency hospitalization because it causes the lining on my brain to swell and then I go downhill fast. This information doesn't always make it to the doctor's attending me from the emergency room. I have to wait to talk to the doctors directly and at that point I can barely speak. I can only go to one hospital for that reaction, and there's only a couple doctor's there that know how to treat it. It starts with a lumbar puncture to test the spinal fluid. I think that they test for high white blood cells and other information. So far I've healed with their assistance. One of these times I won't be as lucky. I am off any type of IVIG Infusions now, but I know I will need to get IVIG Infusions again when I get too many infections and, organ failures or cancer. I've also had a hard life from childhood on up. Almost my entire family struggles with mental health issues. My mom had lupus as I do. A Rheumatologist told me it was inherited. I have a daughter with some early symptoms that I've been keeping my eye on. I will help guide whenever I feel I have knowledge that might help. Bless all your hearts through your struggles. I'm currently in the hospital healing from a bilateral L4-5 decompression lumber spine surgery. I have a wonderful care team and my daughter is here when she is able. She's carrying a 4.0 in college and I'm so proud of her. She has 3 types of epilepsy. Finally she found an Epilepsy doctor who knew exactly what medicines she needed to control them. She occasionally has break through mild seizures, but shes finally able to function. She had a stroke last month at 51 years of age and was temporarily paralyzed. Our lives are a journey. That is how we look at ours. It helps immensely. This is an informational post in case someone can use this information. I'm here while recovering from surgery. Feel free to reach out any time. It may take me a little while to reply, but I will do my best. Bless you all on your life journeys. #Hypogammaglobulinemia #Epilepsy #Stroke #Immunedisorders

Continued from Part 1

Yep, I got their attention.

A friend of mine saw the deep fingernail gauges on my inner arm, and the information made its way to the school counselor, who proceeded to tell me that I could either call my parents and tell them, or she would. Pretty standard. Of course my parents were shocked and confused and, despite believing psychology/psychiatry to be a variety of pseudoscience, took me to see a Christian psychiatrist, then proceeded to warn me that "if this behavior continued", I would be sent away to a mental hospital. I had read about mental hospitals and asylums, but nothing modern and certainly not regarding a character with self-harm tendencies. I pictured being dragged away from my loving family like a criminal, locked in a padded cell with no furniture, and drugged out of my mind for months on end, occasionally being electrocuted, or worse. Needless to say, I was absolutely terrified when, at my next appointment, my parents asked if I had told the psychiatrist about my latest self-injury, and I refused to go back. I also changed my methodology to things which caused pain, but left either no marks, or ones which were more easily hidden. I was no longer seeking help; I was downright petrified to ask.

I did wise up in the middle of 10th grade, and lowered some of my own academic expectations of myself, to my fathers gentle chagrin, dropping from the highest level of classes to the AP level in all but math, in which I dropped down to the basic intensity level (though still 2 grades ahead). Finally, I had a course load in which I could be moderately successful! The depression lessened significantly, until....

COLLEGE

I was determined to succeed. I was going to be a middle school band director, just as I had dreamed since 7th grade. With a reasonable 15 hour course load, and now determined to get help for my ongoing depression, I just knew I could do this.

And I did. I made friends, worked hard, tried a couple different medications, lost a bunch of (definitely excess) weight, and seemed to be on a roll in all but one particularly challenging class. However, by Christmas Break, it was starting to catch up with me, and unbeknownst to me, the medication that I believed was "working" (ie: I wasn't crying all the time), was in reality either numbing them, or preventing me from expressing them, the results of which would soon become apparent.

Spring semester began with a renewed determination and vigor, which was unfortunately short-lived. Only a few weeks into the semester, a series of migraines (which the doctor believed was technically one migraine fluctuating in intensity) forced me to miss multiple classes over a 2 week period. I was in a ton of pain, scared for both medical and academic reasons, and feeling like an utter failure and possible hypochondriac. "Who misses class for a headache, and who gets a headache for 2 whole weeks?!" I thought at the time, though now I know that this is FAR from unheard of. My teachers were incredibly understanding and gave me ample opportunity to get caught up, but in my mind the damage was irreparable.

See, part of me felt the fear, doubt, and shame, excessively even, but I couldn't seem to express it. I even feared to admit that it existed, because that would mean that I was too broken for the medication to fix. The self-harming returned. I dyed some of my hair bright pink, just to have something to smile at. And I continued to miss certain classes (especially math) due to "migraines", some real, but many more simply my shame and increasing depression causing me to hide from reality. This coping mechanism dated all the way back to 4th grade, usually taking the form of reading (usually fantasy), daydreaming, or forum-based roleplay. However, beginning in high school, I had also begun to use sleep as a way to escape from anything that felt too overwhelming: assignments, chores, and even my own mind. This became my primary escape during this time.

I didn't understand why I was falling apart. In my mind, I had no excuse, and was convinced that if *I* couldn't even understand and thought I was just lazy and a bad student, everyone else would see me the same way. More than anything, I dreaded disappointing my parents.

So instead, I made everything worse...

I could feel the migraine starting early in the day. It first started with pressure in my head. Slowly my eye sight started to blur. I could feel an increase in tension in my muscles. There was a weakness in the back of my neck. My anxiety started increase and a sense of panic came over me. My balance left me. The floor started to spin.
A couple of hours of rest in a dark room and the worst past. I was left with a headache hangover.

I’m recovering from knee surgery and feel so stuck. I haven’t been able to shower without help, I’ve had a bad headache all week, and my partner has been working a lot of overtime. Most days I’m just here alone.

Some close family members are dealing with health issues of their own, and my support system is far away or very busy. I don’t want to keep leaning on anyone, but I feel like such a burden and I’m exhausted and lonely.

I know others have it worse, but I could really use some kind words or encouragement right now.

Hi, my name is Zinniaglow45.

#MightyTogether #Anxiety #Depression #loneliness I’m recovering from knee surgery and feel so stuck. I haven’t been able to shower without help, I’ve had a bad headache all week, and my partner has been working a lot of overtime. Most days I’m just here alone.

Some close family members are dealing with health issues of their own, and my support system is far away or very busy. I don’t want to keep leaning on anyone, but I feel like such a burden and I’m exhausted and lonely.

I know others have it worse, but I could really use some kind words or encouragement right now.