Hello my Dahlins! This past weekend was so hectic that I didn’t have a change to post they way I would have wanted and yesterday was absolutely HELL for me! In order to answer they why it was hell for me, I will have to unburden my soul it would seem and make a teeny confession… more than one confession in reality. My confession is this my Lovelies: I laugh, I giggle, I approach the not so great things in life with at least a bit of levity and have a sarcastic and caustic sense of humor at times. Am I funny? Maybe, if you say so, but a portion of my humor comes from a place of pain. The truth of it is that my health seems to fail me at times. I am coming up on the anniversary of year ago when I ended up in the hospital fighting for my life, and so comes a time for reflection and thanks that I am here to even write any of this. This blog, my blog, is an attempt to channel all of the words that I want to say but at times don’t have the voice to publish; and maybe, just maybe, it would help someone going through the same things or something similar.
I have Rheumatoid Arthritis (RA), I have been exhibiting symptoms since I was 17-18 years old and thus far have not had a pain-free day in nearly 12 years. Don’t get me wrong, some days are much better than others and the pain is something that you become accustomed to. My pain tolerance is higher than most, what would intolerable for most, is annoying and painful for me, but I can still function. Yesterday was one of those days that functioning was limited, barely able to walk, not able to grasp even the simplest of things, barely able to text on my phone ( thank the good Lord for touch screen phones!). I am first to admit that some days are beyond what I can take, the pain, the stiffness, the swelling and the low-grade fever, it all gets to be all too much and the tears flow freely. Me crying doesn’t decrease my physical pain but does soothe my emotional distress, it is cathartic and brings me down off of the edge. Anyone with a chronic condition, a chronic pain condition at that, knows exactly what I am talking about. Crying gives you the bit of strength that you need to push forward through the pain.
Less than a year ago I was diagnosed with Common Variable Immunodeficiency (CVID), Hypogammaglobulinemia ( a symptom of CVID), Idiopathic CD4 Lymphocytopenia and to top it all off Inappropriate Sinus Tachycardia! The first is an immunodeficiency where my immune system doesn’t produce the antibodies that are needed to fight pathogens, fails to protect me and by proxy makes me susceptible to illness and infections, which are recurring in nature. The second on the list is a type of primary immune deficiency disease characterized by a reduction in all types of gamma globulins (antibodies). The third one with the horribly long name ( I will have to ask my physician buddy UB why the deuce these names are so long! UB, if you are reading this please give me an answer that doesn’t include, ” I don’t know” LOL) compromises my immune system and makes me susceptible to opportunistic infections ( like the fungal infection that infiltrated by lungs last year, staph infections, etc.) and has no real root cause, hence the “idiopathic” moniker. I might as well be living in a pretty plastic bubble because if someone at work is sick, I’m gunna catch it and it will turn into something nasty!! Common bacteria that people with normal immune functions would be able to fight and have little to no symptoms, has the very real potential to be fatal in me. The last on the list is an inappropriate arrhythmia that causes my heart to race, flutter/murmur, chest pain and shortness of breath.
I can’t say out loud most of what I have written here because it causes a lot of blank stares and general disbelief in people. I have been asked: How am I able to deal with all of those things plus the RA and the primary and secondary issues that come with it ( joint deterioration, herniated discs, radicuolpathy, etc.)? Why do I work? Why don’t I just stay home and rest? How do you deal with the pain? Truth of the matter is, working is a very welcome distraction, I deal with each day as it comes and have learned to embrace my limitations some days. Some days I can’t walk very well, if at all; those days I work remotely. I laugh and joke, I cry at times from pain and sadness and at times out of thankfulness to God. Don’t get me wrong, I get depressed, I get upset, I cry to God and ask why. But the answer that I get is that I am stronger than I can imagine, someone somewhere is going through the same thing and needs encouragement and to know that not every day is bad. I remember the burden that Christ carried for me and if He as a man could handle that, I can handle this.
My humor comes from a place of me being silly, me being me and making light of my everyday situations and also in part as a coping mechanism and cathartic release. I don’t tell you any of this to garner pity or sympathy, praise or adoration. I do it to give hope to myself and anyone else who feels alone in the world when dealing with these or any maladies. I join groups, support groups that help me by letting me know that I am definitely not alone, no one may have the unique combination of ailments that I have:
Asthma/RA/Herniated Disc/Radiculopathy/CVID/Hypogammaglobulinemia, Idiopathic CD4 Lymphocytopenia/Inappropriate Sinus Tachycardia/MVP (Mitral Valve Prolapse)/ Gastroparesis/Chronic Pain Syndrome It looks like a lot when you actually write it out… sheesh :-)… but someone may be helped.
Every day is a blessing my Lovelies, every day is new and comes with its own set of issues. Take every moment as one of opportunity and joy!
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Blessings and Happiness
T. Nicole a.k.a. “The Duchess”