Now that October is underway I wanted to take the time and answer some questions. Now, not everyone with chronic illness has the same manifestation of symptoms . Honestly even with the same diagnosis as some other spoonies I have met, our lives while similar are oh so different. Please don't take this session as a catchall for every human with a chronic illness. Take this with a grain of Rachel salt. This is just my walk on this never ending uphill battle.
What's wrong with you? What exactly do you have ? Is it terminal ? Is it like cancer?
I combined these because of the close similarity. Hopefully I don't have to elaborate that " what's wrong with you" could probably be phrased better. But I'm here to educate so I'd love to talk about "whats wrong with me." Let's first get this elephant out of the room, I'M NOT TERMINAL, I'm chronic. While I have many health diagnoses ( most intersect another) I'll talk about my main ones.
--- Dysautonomia: This is a dysfunction of the autonomic nervous system that regulates non voluntary body functions. My subtype is called postural orthostatic tachycardia syndrome (POTS.) I won't dive too deep into this diagnosis since I have a whole post about it. ( Dysautonomia awareness.) Management of this (for me) includes medications for heart rate and blood pressure, increased salt intake and a central line for IV medication and fluids .
--- Mast Cell Activation Syndrome (MCAS): This is an immunological condition where mast cells inappropriately and excessively release chemical mediators, resulting in a range of allergic reactions. So all that lovely medical jargon... Yeah throws me off too sometimes. Basically you have these things called mast cells which are responsible for allergic responses. So I have too many, and the ones I have overreact. My reactions range from something as simple as hives or flushing, to shortness of breath and anaphylaxis. This means I have to be extra cautious in my everyday life to avoid triggers. What are my triggers ? Here's a fun part of MCAS, triggers can be ever changing. Seriously I'll go into anaphylaxis over something I'm not even allergic to. Fun right? This makes it tricky to manage. Just the other day I ate eggplant parm (which I LOVE) and my throat started to close up. Management of MCAS is avoidance of triggers and medications ( H1 and H2 blockers and mast cell stabilizers.)
--- Ehler Danlos Syndrome ( EDS): This is a connective tissue disorder that primarily affects the joints, blood vessels, and skin. So my joints are hypermobile, meaning the extend or bend in ways that they shouldn't. Also, my skin is unusually soft and bruises easily. Thankful my type of EDS doesn't affect my organs. I commonly get dislocations of my joints or partial dislocations called subluxes. My majorly dislocated joints are my hip, fingers, knees, and jaw. I'm also prone to severe joint pain, muscle weakness, and poor wound healing. For management of my EDS I take an array of medication, use assisted mobility aids when needed, and live in usually some type of brace to assist my joints to doing their jobs in staying in place.
How do you maintain your mental health with chronic illness and constant medical barriers or setbacks?
Gosh I love this question! When you have a array of different illnesses, mental health is something that gets talked about a lot. Let's be honest. When I first had this crazy set of symptoms, from pain to cardiac, I was told I had anxiety. I was told it was all in my head.
Whoa. My health took a major decline about three years ago. To be told that it was all in my head in my early 20's had me second guessing myself..... a lot. I mean if you're told something enough, you start to believe it. I thought I was going crazy and belonged in the nut hut. Once I started reaching out to others and different medical professionals dots slowly were being connected. Finally I knew it wasn't all in my head as others had told me. Being chronically ill can take a toll on someone's psyche for a fact, but where is the sanity in that. I have not much of my health in control at the hands of others, but mental I can control. The first thing that is always commented on when I go to appointments or procedures is my cheery disposition. Look . I could be " whoa is me." I could pity myself. I could play the victim. I could be sad about the fact that my health is shit. I could distance myself and retreat from others. But am I really being me then? If I was miserable and mean I wouldn't want to be around me, let alone have other people be stuck dealing with Miss Crab Pants. Does this mean it's all rainbows and sunshine? Absolutely not. But I have a five minute rule. If I'm having a rough day I allow myself five minutes to be upset, pity myself, or wallow. After my five minutes is up I have to put my big girl panties back on and go about my life.
How many treatments do you do?
This got me curious so I counted. I take 34 pills a day, including medications and supplements. Holy Cow. That's not including my as needed medication. I also take a mast cell stabilizer liquid four times a day. Also for treatment I have a central line where I do infusions and as needed IV medication. I know this seems excessive. I have tried (and failed) alternatives to pharmacuticals. I also have found great successs in adding certain supplements. At this time the combination is to just maintain some type of normalcy in functioning.
On the bad days what do you do ?
On the bad days not much gets done. I can be found in a warm bath, on the couch, or up to my nose in my bed on these days. These are the days were I function enough to pee and take my pills. My hair doesn't get done, my face doesn't always get washed , and I may or may not get out of my pajamas. These days are reserved for Netflix binges and animal snuggles. On these days I like to listen to audio books and light a candle. If I manage to eat ,the menu holds left overs or freezer meals. These days hold naps a plenty. I can always be found in fuzzy socks on the tough days.
When will you be better?
Chronic illnesses are chronic. I may have times when I'm better versus not so hot. I may even go into remission, but I'll always have POTS, EDS, and MCAS.
Is there anything you've overcome that makes you feel strong?
Sepsis. This word stems fear in a chronic illness patient. We know management of our health comes with risks, and this is the big kahoona of risks. This word is the reason we are so nit picky about our central line care . For this word alone is the reason I wash my station, sanitize my station and do it a few more times just for good luck. I wash my hands double long, hand sanitize them then glove up. Its the reason we go through more alcohol than life. Its the reason for extra precautions and avoidance of this dreaded word. For those of you who aren't familiar with sepsis, it's a the body's toxic and overactive reaction to infection. If sepsis goes untreated it leads to organ failure and death. My symptoms included a high heart rate, an uncontrollable fever, fast breathing, and confusion. Being an EMT lead me know put two and two together to know this was means for a sepsis alert. The type of infection I had was MSSA bacteremia of the port and blood stream. Basically my port a cath in my chest got infected and due to negligence of the hospital staff the infection moved into my blood stream. After five days inpatient, port removal surgery, and hardcore IV antibiotics, I was discharged home with IV antibiotics every 8 hours for 21 days. In the midst of my recovery I was diagnosed and admitted again to the hospital with a pulmonary embolism, thrombosis, and DVT. I'm slowly on the mend but recovery takes time. I realize that I'm not at typical healthy patient so recovery takes longer than my impatient ass would like, but I'm on my way. It made me realize I wasn't strong because I wanted to be but because I needed to be. Beating sepsis and its complications made me realized I was stronger than I knew I ever could be.
Thank you to everyone who reached out and asked questions for this post. I hope this is a recurring issue we can do every so often with questions that you have :)
