You know the old saying; “I’m sick and tired of being sick and tired” I’ve had health issues nearly my whole life and my immune system is the biggest problem of them all! I was born the runt of the litter with many health issues. Anemia, hypoglycemia, Hemophilia, Low blood pressure, and low heart rate and I am severely claustrophobic. With all of that, as I got a little older I suffered from anxiety, depression, and panic attacks.
As a child little cuts or nose bleeds weren’t that big a deal but for me they were terrifying as you have to wait an extremely long time for it to quit. The first migraine I experienced; was that and my Mother were in a pharmacy just looking at girlie stuff, and as we walked around some smell, most likely cheap perfume or AXE body spray, lol, brought on a blinding migraine. Literally, I went blind and I had to go in an ambulance to the emergency room. Throughout my life, it was routine to go to the emergency room or my doctor’s office to get injections in the back of my neck and then drive home to sleep for two days.
My first panic attack; I was coming home from work on the Buckman, the three-mile bridge; I was triggered and started having a panic attack and literally I pulled over in five o’clock traffic and finally a police came to assist. They ended up having to call my Dad who had to cross both ways, yep 7 additional miles came to drive me home.
When I was about 19-20 I got Mononucleosis; there are three strands and I didn’t get the “kissing disease” I had 2 of the 3 strands. I was so sick that my Mother had to come to help me during the day. I could barely walk to the restroom myself. It has always made me feel a little sluggish and I worry about damage to my internal organs, but I had not thought of this for so long not even after I was diagnosed with Lupus. I was talking with my parents and realized how similar the symptoms were. This was also about the last time I was able to donate blood. I did not have enough to even fill the bag and they confiscated my donor card; it was very sad.
So, running on an empty tank with little sleep has been my life. I have become accustomed to being exhausted and not being able to sleep. I have suffered from insomnia for a very long time. It wasn’t until I started experiencing other issues such as severe vision changes, heart racing, erratic heartbeat, waking up like I had been lifting weights all night, and just very achy and cold feet. I also suffer from skin issues, sweating, and weight gain to name a few that’s when my doctor sent someone to come do bloodwork. I already had been on telehealth and had a home health care nurse.
As all these weird things began happening to my body so quickly; and with the second round of bloodwork indeed confirmed; Diagnosis confirmed, I was told I have Lupus SLE, Idiopathic inflammatory erythematosus, and several other autoimmune disorders that are yet to be diagnosed. I am now waiting to find my forever rheumatologist. Recomendations welcome. Yes, I am scared and unsure of what’s to come. I am in desperate need of predictability in my life, most of it anyway, but I think I am stuck in a daily loop of uncertainty like the movie. ab://en.wikipedia.org/wiki/Happy_Death_Day
SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it. https://www.cdc.gov/lupus/facts/detailed.html
The idiopathic inflammatory myopathies (IIMs) are a group of autoimmune conditions characterised by inflammation of muscle (myositis) and other organ systems, resulting in widespread organ dysfunction, increased morbidity and early mortality. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297649/#:~:text=The%20idiopathic%20inflammatory%20myopathies%20(IIMs,increased%20morbidity%20and%20early%20mortality.
So, to all of you who have noticed that I have dropped off the planet here it is. I have kept this from everyone for a year except for my parents and one other. I have made stupid excuses, rarely seen friends, or socializing, and stopped meeting new people; I mostly keep everyone at arm’s length it’s my defense mechanism. I have exiled myself until I have no one left.
That is not 100% true I have a few real reals that absolutely refuse to let me disappear and I love them, and I am so grateful for that. Suffering in silence instead of giving my tribe the opportunity to decide for themselves is selfish. That is why I have decided to share my story and the facts of my illness so that the few of you who truly do care know my situation. I am the Master of “Avoidance Coping”; I live my life in hopes that everything will work itself out. I don’t know what my future holds and please feel free to ask me anything you need I will try to keep you updated without fixating and letting it define me. I still have my hopes, dreams, and goals. I still believe I have a future and I hope to be able to get a handle on this and pursue travel and mission/outreach work.
I am hopeful once they get me on the right kind of medication and get me feeling like I can go farther than downstairs. I will be able to get back to some normalcy. Also, if you are reading this and you are suffering from Lupus and you know of a more natural treatment; I do not do very well at all with pharma medications. One of many weird things with my body chemistry is that they work contrary. Natural, medicinal seems to be the most effective for me.
I am sorry to you that deserved an explanation and I failed to share it with you. I know some of you who once were a big part of my life are just over my sadness and family issues, and I just decided not to unload another reason to avoid the sad, sick girl.
However, I have chosen to NOT! I am not going to be that girl, you know the sad one, the one with so much household drama, and now the girl who is sick. The one that can possibly be a drag, so it’s not worth the risk. Nope, not her. I choose not to be that girl. I am going to focus on my health, move forward with life, hopefully have my tiny tribe, and start dreaming again.
I will travel to those places I want to go, I will go and volunteer abroad and I will continue to give my food to the homeless, and buy the less fortunate a drink or give them crack money when I see them. This is my purpose and I will not let “Luppy Lupus” mess it up!
My sequel is yet to be written and who knows, sometimes the second book is better than the first! Cheers!
JaxBeachHippie 