Raising A Family + Chronic Illness
Hi, I'm Ellen, owner/author of 'e + r co' at http://www.ERoseCo.com. I offer business/hr + content as well as aesthetic vintage + decor services and manage a blog. The blog is about finding ways to manage my trifecta of chronic 'invisible' illnesses while (trying to) stay sane enough to raise a family, have hobbies, and earn an income. I was laid-off in January and haven't been able to find another job -- so I am trying to offer up my talents and work for myself! My son also has health issues so I really need the flexibility a set 9-5 job can't provide.
I think we can all agree there's already enough stress when raising a family -- add chronic illness & employment struggles on top -- and KABLAM! You end up like me with major brain fog, insomnia, and you start talking to yourself. You realize you need an outlet. The blog is my outlet. (Okay...I still talk to myself...but that's beside the point).
My illnesses are mostly #invisibleontheoutside, so to others I appear fine. But looks can be deceiving. I'm actually in pain and fatigued all the time. Yes. All. The. Time. Therefore, it's largely a mental and emotional battle. I continually try to smile, lean on my virtual support groups, give myself pep-talks, and write.
Hopefully my ramblings help others in similar situations feel okay about life not being perfect 24/7 and I can meet some awesome people along the way. And if I'm able to make any financial contribution to running my family, because of givers like you, it will all be worth it!
::THANK YOU:: in advance for any help to make this journey a continued reality.
We will use any gifts towards our mounting medical bills and therapies. Some of our needs include, custom foot orthotics ($650), sleep apnea mouth appliance ($1,000), night & MSLT sleep studies ($3,000), continued OT/ Speech/ PT visits ($1,600 per), theracane, SI Joint injections, and new bracing. I also have a growing need for a single-story home with greater accessibility, so keep me in mind if you win the lotto. ;)
::(Brief) medical descriptions::
- Ehlers-Danlos Syndrome (EDS): My body's collagen (building block proteins) have large holes in them. All my tissue (skin/ ligaments/ muscles/ veins/ organs) sag, tear, bruise & struggle support my frame. I am a human gumby. It may sound fun...but...I can assure you it's not all it's cracked up to be. The sagging & hypermobility puts a lot of stress on my bodily systems & causes numerous spin-off (idiopathic) conditions from things not working properly (Ex: chronic headaches, IBS, hypersomnia/ narcolepsy). I also get injured easily, have a lot of muscle knots, can dislocate suddenly (my knee was 2mm from being amputated) & am generally clumsy.
- Mast Cell Activation Syndrome (MCAS): My body's mast cells are hyperactive. Mast cells appear all over the body & are quite a new discovery. They produce heparin (natural blood thinner), histamine & several other vital molecules. Mine make my body think I'm having an allergic reaction(s) to nearly everything I ingest/ breathe/ touch (you get the idea), which causes aches/ inflammation/ itching/ burning/ brain fog/ temperature intolerance/ malaise. I'm slowly trying to identify events, environmental factors & specific chemical compounds that trigger these reactions in an effort to calm them down. Until then, taking antihistamines & other allergy medications multiple times per day & avoiding histamine inducing activity/ foods is my best bet. This includes avoiding high heat/ bitter cold/ exercise/ stress/ pain/ being tired/ infections/ insect bites/ highly ferment-able foods (grapes, cabbage)/ etc.
- Postural Orthostatic Tachycardia Syndrome (POTS): My veins have a hard time fighting gravity and blood rushes to my feet, especially when sitting & standing up -or- moving suddenly. I experience a rise of heart rate & drop of blood pressure which means my head lacks blood (oxygen) and I get dizzy & hot and need to rest a lot. It may look like I am lazy to some, but it causes blackouts if I'm not careful. Vacuuming and dusting even become daunting. I try to maintain a high sodium diet (weird, right?!) but sodium helps me retain fluid, which helps to increase my blood volume and (hopefully) prevent the draining downward effect. I also take beta-blockers.
::For more information::
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