The Sort of Hope Who Waits

The countdown to K has begun! My Philadelphia Freedom as I have come to call it is waiting for me.

19 days til my next treatment. The closer I get the harder things get for me. It gets harder to get out of bed. It gets harder to eat, harder to move. It gets harder to function basically. I get so very tired so quickly.  So I wait. I wait for the world to become more accepting of people who are “sick but don’t look it” . I wait for understanding from friends and family who can’t see my invisible disease or my swollen *insert whatever internal organ you chose here*. I wait  for the world to become more tolerant of those who are different from each other and I wait for a cure.  I guess you could say I am “waiting on the world to change.”

“Nerve-mber” our fearless leader has chosen to call it. In honor of how RSD/CRPS destroys our nervous system. It is our responsibility to continue to raise awareness of this disease in order to educate the public, each other, even medical professionals and hopefully to someday find a cure. To that end, I share the following… in the meantime, I wait.

Elle and the Auto Gnome

That blog ( above) contains the  best description (ever) that I have found of what dysautonomia is , written by another CRPS suffer. What *is dysautonomia* you ask? Just more joyful issues that some of us with CRPS have to deal with. (copied from Elle and the Auto Gnome) these issues are due to our faulty Autonomic Nervous Systems. These issues are also some of the reasons why I get so very irritated when people say ” WOW. You look great, you certainly don’t look sick.” And though I truly appreciate the compliment, as I do go to great lengths for my (vain)self and for the sake of my family, my children to make certain I *don’t* look sick, I wish I knew what sick was supposed to look like. Or how you could see all these things in someone.  The closer I get to my treatment, the harder these symptoms seem to be to deal with. Thankfully I don’t have all of them. As Elle’s blog mentions, not all of us have every one. Thank heavens. But many of us have many of them. I was trying to think of what I would consider to be the worst affliction  and I really can’t.

Far worse for me than any of these symptoms is the lack of understanding that surrounds those of us who suffer. Far worse for me than any of these horrible things mentioned below is watching my fellow RSD friends die due to the ignorance and lack of knowledge of the world around me. 

  • Tachycardia (very fast heart-rate)
  • Bradycardia (slow heart-rate)
  • Arrhythmia
  • Chest pain or discomfort
  • Dangerously low blood pressure
  • Sudden drops and irregularities in blood pressure (as a result of inappropriate dilation and contraction of blood vessels)
  • Blood pooling (on standing up the blood vessels do not constrict as they should, gravity naturally causes the blood to then pool in the legs, reducing returning blood flow to the heart).
  • Trouble staying upright (orthostatic intolerance)
  • Weakness and excessive fatigue (not the same as depression. Minor activities can lead to extreme exhaustion)
  • Fatigue after reading or concentrating
  • Heaviness of lower limbs
  • Unsteady gait
  • Slurred speech (aphasia)
  • Cognitive impairment – memory problems
  • Cognitive impairment – ‘brain fog’
  • Cognitive impairment – comprehension difficulty & confusion (understanding individual words but not making full sense of the overall concepts or context of the words in a sentence)
  • Cognitive impairment –  concentration, losing focus when conversation takes an unexpected turn
  • Cognitive impairment – speech disturbances (inability to finish a sentence, losing train of thought)
  • Cognitive impairment – memory
  • Cognitive impairment – word recall
  • Intelligence normal when blood flow is sufficiently normal
  • Adrenaline issues with over-activation of ‘fight or flight’ mode
  • Dizziness
  • Lightheadedness
  • Fainting (syncope)
  • Near-fainting (near-syncope)
  • Exercise intolerance and syncope
  • Gastrointestinal problems [DINET says these are very common] (including Irritable Bowel Syndrome, constipation, diahorrea, abdominal discomfort)
  • Bladder related issues (e.g. overactive, neurogenic – lacking control, different at night)
  • Blood sugar issues
  • Pupil dilation issues
  • Nausea, sometimes vomiting, bloating
  • Sleep disturbance
  • Insomnia
  • Needing more sleep to function
  • Breathlessness
  • Yawning
  • Anxiety
  • Convulsions
  • Blurred, tunnelled or dimmed vision
  • Migraines and headaches
  • Inability to regulate body temperature
  • Heat intolerance
  • Cold hands and feet
  • Decreased sweating
  • Increased sweating
  • Joint or muscle aches
  • Myofascial (muscle) pain
  • Nerve pain
  • Neuropathic pain (amplified pain signals to the brain)
  • Tremulousness (tremors, shaky etc)
  • Sexual dysfunction (impotence, loss of libido, dry or retrograde ejaculation)
  • Bowel dysfunction (intermittent diarrhoea, night-time diahorrea, rectal incontinence)
  • Increased emotions
  • Noise sensitivity
  • Generally feeling unwell on a daily basis (severity of symptoms can vary day-to-day)
  • Temporomandibular joint problems (TMJ), also known as myofacial pain dysfunction, and Costen’s syndrome (can include stiffness, pain, headaches, ear pain, tinnitus, neck pain, bite problems, clicking sounds, restricted jaw motion or locked jaws)
  • Panic attacks – induced by faulty ANS responses (including dyspnea – breathlessness, palpitations, chest pains and discomfort, sensation of being choked or smothered, dizzness/vertigo/unsteadyness, paresthesias – abnormal skin sensations e.g. burning/prickling/itching/tingling with no apparent physical cause, hots and cold flashes/sweating/faintness, trembling/shaking, fear of dying/going crazy/uncontrolled behaviour)

~ waiting ( not so patiently) on the world to change.

The Sort of Hope Who Gets Flushed

Welcome to November~November happens to be RSD Awareness Month! I kicked off awareness month by getting flushed.

 

For those new to my blog, I am sick.  For 12 years I have had a disease called RSD. (reflex sympathetic dystrophy). I am currently receiving regular treatments through an amazing Dr in Philadelphia. This treatment requires regular access to my veins. It is kinda/sorta like chemotherapy but only for what I have.  ( I do not have cancer most people associate ports with cancer so I always feel the need to over clarify this. )  RSD is a disease that affects the central nervous system. It changes the way my body works. It is different in almost everyone who develops it. It predominately affects skin, joints, muscles, bones and sometimes impacts the way the internal organs function( like it has with me). It’s most common trait is severe burning pain. Constant relentless burning.

My port is to make my life just a little easier. A little less painful. My port requires routine maintenance to keep it functioning properly. The maintenance of this port is referred to as a “flush”. It always makes me giggle.  (what it’s called, certainly not the flushing itself, as it involves the insertion of a needle and as far as I am concerned, that is *never* funny.) I go to the Infusion Suite at the local hospital since they have been kind enough to save me the 55 miles that I normally travel to my doctor  just for this literally 2 minute procedure. The nurses and staff at the Infusion Suite are probably some of the greatest , kindest people I have ever had the pleasure to deal with. I always feel badly about taking them away from the very sick people there and they never make me feel like the inconvenience I go there feeling like. My Dr and  I decided I needed a port because my veins kept blowing. Also because IV’s are painful and every time a person with RSD gets a stick somewhere, it is a possibility that their condition can spread or at the very least, cause the condition to flare up. Getting a port was probably one of the best decisions I have made for my own healthcare to date. I had my port inserted right before my first 7 day inpatient Ketamine Coma over 2 years ago which was another great move because I wasn’t really awake to feel any post surgical pain until over a week later.

Most of the time I forget I even have a port. Until I see it. Or feel it. Or bump it. My daughter is somewhat fascinated by my port. She is one of the only ones who seems to ‘like’ to touch it. She likes to feel the “straw” that is inserted up into the main artery into my neck. She’s an odd child.

My port is not without it’s own issues, though. Somehow, out of all the port insertions, in all the operating rooms, mine falls a little short. Literally. Because of that, it has trouble giving returns. The “straw” ( catheter) that is supposed to go into the main part of my heart is just a fraction too short. So while it works to give me my treatments, ( put things into me) it doesn’t often work for blood return, as the catheter sometimes randomly floats between the main ( big) vein              ( artery? ) vein, (I think) and the smaller one right next to it. I can’t really think about it or it freaks me out. Something is randomly floating inside my heart. Ya, cool.

I had a port buddy. His name was Kerry. He used to tease me that his “3rd nipple” was better than mine because it had more holes. ( he had a fancier sort of port). Sadly, the world lost him a few months ago after his valiant fight with cancer. We used to talk about being sick together all the time. He was one of the few people who I ever actually truly talked about being sick with. We discussed how we hated it, our constant struggles, how we hated what it did to our families and how much fighting we did with ourselves. He truly “got it” . I miss him. He was feisty. I loved that about him.

I both love and hate my port. It has saved me countless sticks. But when I do see it, or bump it, it serves as a reminder that I am not who I once was, I am now RSD Hope. And RSD Hope has to get flushed.

do it while you can, kid.

just passed my very sweaty 16 year old son post work -out in the hall on his way back  up to his room…

protein shake in one hand and 2 bags of doritos in the other. not sure if he is trying to gain muscle or confuse it.

*smh*

~ teenagers…

It’s difficult , sometimes, living in this house of amazingly fit super successful athletes. My son is a baseball player ( guess you figured that out from the photos) . My beautiful daughter is a competitive gymnast since the age of 6 , now a Level 7 for USA Gymnastics and also a recent addition to the world of HS Cheerleading.

Nick is now 16 and Natalia is 14.  and I’ve been “differently abled” since falling down the steps when Natalia was just 2 and he only 4. Spending 2 of their toddler years on crutches being shuffled from dr to dr to seek the most current form of treatment for a then little known disease called “RSD” aka Reflex Sympathetic Dystrophy. At the time of my injury, I worked full time at a large local Hospital in Human Resources in a job I was certain I would retire from.

Housewife/stay at home mom is a role I never wanted yet somehow found and embraced nonetheless.  When I was forced to give up the career I loved more than anything, I made the decision that I would put all the energy and passion I had for my job into my new role. I decided that my new “job” would become being the best Mom that I was capable of being. Remember, my children were 2 and 4 at the time. Staying home seemed the scariest option in the world to me. How could days filled with messy, loud kids possibly be as fulfilling the place where I went to to escape this loud, messy, chaotic home?  In a blink my life went from working 45 hours a week,- power meetings with CEO’s and the like, teaching Sunday school, and starting a business to cooking, baking cleaning and coloring. It was a huge adjustment and one I never thought I’d have to make. At first it was difficult. I missed grown ups. I missed the fast paced, packed calendar I kept at the Hospital. But slowly strange things started to happen. My children started to teach me how to live. I learned the beauty of a butterfly, of a fall leaf, or the amazement a cracked sidewalk held. I learned the joy of a bottle of bubbles. I took an interest in cooking and began to delight in the responses I received when I got it just right. I discovered parts of Hope I never knew existed. My children have slowly begun to teach me who Hope is.