In the wake of having to cancel my book signing due to a slow delivery (though X's Lemon's to Lemonade Stand will be at Claremont's Fall Festival on Sat. Oct. 1 along with my jewelry), I am declaring today LINDA DAY!  |
| Herpse Zoster (aka Shingles) usually appears as red, itchy or painful bumps along a nerve line. See between my eye, above the left eye & my top right forehead. |
I knew once I hit that "accept" button something would happen to stop me from going to my ten year reunion.
I wasn't going to accept the invite. I was just going to show up, but I did. I was feeling good 5pm Friday night.
I didn't think anything could stop me from my day of plans on Sat: soccer shoot outs, maybe a yard sale, my tenth reunion, and N's 30th birthday party.
After hitting the accept button, the boys (J, X, and C) decided, since it was raining, they wanted a rare family night out with dinner and a movie. They were voting to see the inspirational dolphin movie.
I was voting for a comfy family night in. My stomach had started to churn. I felt a little feverish. I just didn't feel good, but I knew if I said no nothing would happen, and I don't remember the last time we went out on a "date."
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| The first spot is seen as a red patch near my ear, it has extended above my eyebrow & to my temple. |
We got pizza before the movie, which immediately flipped my stomach.
When we got to the movie theatre I ran right to the bathroom. I felt feverish and nauseas and itchy. I wanted to go to bed, but I stayed awake through the movie.
It was a good movie, inspirational.
But when I got home I looked in the mirror only to see little spots all over my forehead, itchy, burning spots.
Acne? Maybe, it looks like it.
Bug bites? Maybe, it definitely itches.
Shingles? I'm always a little in denial when I get shingles.
Those nasty shingles just kept popping up! The red spot on the back of my arm, along with multiple spots near my hairline, & a few bumps @ the bra clasp.
I tried to sneak into my second transplant while having active shingles, but on the gurney to get my line placed I confessed.
I took out an alcohol swab and rubbed it all over my face to dry out the oozing wounds.
WHEWEEE!!!
I thought nothing could stop my plans. Nothing could stop me except SHINGLES!!!
Yes, grown up chicken pox all over my face, under each arm pit.
Like the hard core crazy chick I am when it comes to healing or containing contagion, I saw the bumps spreading all over my face, and not completely knowing if it was shingles or an acne breakout , which I've never had, I took alcohal to it to dry them out.
I don't recommend that treatment.
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| This is a "WTF" symptom. It looked like shingles, it itched and hurt too, but it's on my shin, not a nerve Maybe a cellulitis? Who knows, but I was diagnosed with "diseminated herpes zoster." Very serious. |
Shingles burns enough on its own, but being around kids with a spotty oozing face, I had to do something.
It dried them out.
My prophylactic 500mg twice a day valcyclovir didn't save me.
I called the doctor. He took pity on me and had me try 1000 mg three times daily so I could enjoy my family, but Sunday came and the shingles had gotten worse!
I had spots creeping towards my eyes, spreading more across my forehead, across my back. It was all over. I hurt and I itched.
I called the Doc back, as I was told to the day before, and it was time I headed to the ER for IV anti-virals for "Disseminated Herpes Zoster," and after X's game, I was ready to run to the ER for relief.
"It takes a 100 compliments to undo one criticism." -Unknown
During my first transplant, at my sickest, I murmured about how I was never going back to work as a nurse, and I was going to couch soccer forever instead.
I'd tell everybody I was going to be a soccer coach, not a RN, like one of them may just force me back into clinical bedside nursing.
It seems like I got my wish.
J and I have coached both summer and fall soccer since X was 4.
Even at my worst, in fall 2009 when my lungs threatened my life, we still managed to coach.
Since then, x has lost his memory of me teaching him moves, running drills, and leading cheers, but I've been cautiously optimistic that one day I'd be able to physically coach again.
And I finally did it!
I coached with J before x's flu, leading stretches, teaching foot skills, showing how to pass properly by giving physical examples!!
There was a time I couldn't take two steps without the assistance of my oxygen tank.
I pray I can keep my ability to breathe and stay physically active.
Despite my improved physical functioning, my lung tests have gotten worse.
What? A conundrum? Me?
It's true.
Recent studies show that functional ability in people with asthma can be improved by physical activity.
To get to the point that I could coach again, I ignored my instincts and played until I lost my breath. I'd catch my breath and do it again. Unable to push through my shortness of breath, but through continually bringing myself to the deepest depths of breathlessness, I gained my ability to breathe again.
I pushed that SOB (shortness of breath) straight out of my life.
Since 2009, x has gotten so scared of hurting me he wouldn't let me play soccer with him anymore.
After coaching a group of 15 kids and being his primary caretaker through the flu, he's finally letting me play soccer with him again!
We've played "world cup" where I cross the ball from the side and he scores using whatever he can.
I'm so excited I can influence him again as a coach, but what I didn't expect was the effect me coaching had on our young lady players.
I didn't expect to be looked up to.I didn't expect to have a group a chattering girls surround me after practice asking questions and saying, "Girls rock!" and "Girls are better than boys. Tell them now!" As the boys descended upon us.
I was so excited that I could again be, if just for a moment, a intelligent, attractive, athletic, feminine, strong and courageous woman model for them to emulate.
There are few relatable women coaches in local sports. Many are the ultimate tomboys, and many young ladies are feminine tomboys.
They want to have their glitter and kick ass too, and I'm so excited that I may just be the woman to show them how to do it. 
This is in response to someone who chooses to remain anonymous, but has interested me very much. What they wrote is here:
Hil,This is anonymous, I have been you friend, you caretaker, someone who has said many prayers for you. When you played your little April fools joke I cried for hours. Each time the cancer as returned I have cried. Like you I am dying too. No, not from cancer. I have been sick for many years and they will never be a cure. I really have coded and died. You are very lucky to have such a wonderful and supportive family. Mine has all passed and are waiting for me. It is very hard to feel sad for you at times when you are talking about all the things you get to go with you friends. And you talk a lot about not having money, but there seems to be a lot of shopping therapy. For some of us we don't have all those things surrounding our illnesses, and its not that we don't suffer. You werw the one who talked about getting the attention in the DHMC ER, you opened the door on that one. I hope X is OK. Just remember you will be surrounded by love no matter what. Some of us will just be alone.
Anonymous, I am so glad you have chosen to speak out over so many years of remaining silent. I heard the resentment in your voice from your first comment, and was confused why there was anger there.
It's now my time to cry for you. I am so deeply saddened that you are burdened with a disease you feel you can not share and have no support for, and that your family, your support system, has passed.
I'm sure you would do anything to have the "burden" of a sick child.
I know I would not be alive today without my families' assistance and the motivation of surviving so my child will not grow up motherless.
I am so lucky, and I talk frequently about how fortunate I am, not despite my disease but because of it, to have experienced the vast generosity of humanity that only seems to present itself in the most dire circumstances.
Feeling lucky, appreciative, and happy is a decision I have made. It did not come naturally. It's a conscious decision that requires taking anti-depressants and training my brain.
It's an attitude I hope to be role modeling for others so they can cope as well. There are many things diseases can not do unless we allow them.
They cannot cripple love, shatter hope, or corrode Faith. They can't destroy Peace, kill Friendships and silence Courage. Disease cannot invade the Soul. It cannot steal eternal Life and It will not conquer the Spirit unless it's allowed to.
I will not let my disease be stronger than my spirit, and I pray, neither will you.
I've invited family, friends, strangers and acquintances into my life in hopes having transparency in my trials will help others. It hurts that the same judgments I feared from the beginning remain.
I've humbled myself, asking for help, and in turn, hoped sharing private details and advocating for improved access to reasonably priced care would be enough.
What I write about are not all complaints, they are facts.
I hope you'll take this into your heart, the strong people surrounding me do.
You can have a strong support group too. I'd like to communicate with you anonymously here, by email, however. You deserve better than how you feel, and you're never as alone as you think you are.
Look to your church, the senior center, a therapist, dating service (they have ones that match people with diseases), I think you'll find you are all ready well loved.
I want to address all you said, but I don't want to turn into an angry raving lunatic because the anger is not directly towards you, it's to everyone who judges anyone that struggles financially by saying, "well, they sure do a lot of retail therapy for claiming financial problems." Or "Why did they buy mums? They lost their house. Those $4 should have bought dinner?"
These judgments force people into suffering silently from fear that spending charity frivolously will become their legacy while they battle disease and a system on their own that is designed to bankrupt the patient.
The health care system, though improving, oppresses consumers through taking advantage of the information asymmetry between insurance companies, health care agencies, providers and patients.
This is what I advocate against. I hope people can read my story, learn from my experience, and be prepared, because it's not only a system but a social problem.
Personnaly, I've been a frugal penny pincher forever. I don't have the energy to write about extreme couponing, shoppings sales, buying bulk and freezing. I'm busy doing it.
I've cut my costs as much as possible, even to the point I'm risking blindness cutting my eye drop medication script in half.
We're purchasing/refinancing our house since now I don't live in fear of the 2 million cap on healthcare.
I wouldn't risk going blind and force my husband into refinancing for a shopping habit.
It's a terrible fear of mine that people will overlook all the good I've done: my participation in creating NH Dept. Of Health's online records, my nomination to the board of Trustees to expand it into a communication system, fundraising for Relay for life, advocating for better care for everybody, and only remember, gasp, she accepted charity and shopped!
Thank you for writing and thinking I will always be loved. I hope that is true. I also hope and pray that this will be true for you, too.I've been concerned since a posting months ago (I think in April or May), that some of my comments were taken out of context or misunderstood, especially the part where I told the triage nurse I had chest pain and was quickly brought into a treatment room.
Clearly, I was right to be concerned.
Thanks, anonymous, for readdressing the issue with your comment, "Why didi't you use your little DHMC ER trick and say he ws had chest pain? It got you to the front of the line."
I can't even find the posting, but let's go back. I remember it well.
The day I ran to the ER, I was experiencing what was later discovered to be a severe allergic reaction with an incidental finding of a pulmonary embolism.
An allergy alone would have gotten me "to the front of the line," but the point of chest pain complaint in the writing was not supeficial.
It was very spiritual, and these deeply spiritual situations are difficult to explain to others who have not had long term illnesses, who have different belief systems, who have not been in life or death situations, etc.,etc., but I'd very much like you all to understand that there is something greater than us in the universe that is there to help us through my own catastrophes.
Traveling to the hospital I floated between coma and consciousness. I'd speak unable to differentiate between the reality of the outside world and my thoughts, dreams, or hallucinations.
I was hovering between life and death, this world and the next.
During these periods, I sometimes have visions. I may receive messages.
I can often trace a life saving intervention to a deceased loved one.
A week earlier, my family had lost a lifelong friend, Mrs. L, needlessly to a Pulmonary embolism. This friend's sister died of leukemia when I was 8 leaving behind 3 beautiful young children.
With them, I had my first experience with cancer, and I think of the surviving family often.
Mrs. L's death from a PE could have been prevented. Her leg started to swell after a period of immobility which allowed her blood to stagnate and create the clot that eventually went to her lungs, killing her in her sleep in her 50s.
She'd sought care in the ER twice in the week before and had gone undiagnosed.
Dying in my sleep is a fear of mine. I don't want to taint our family home for X, and x often crawls into bed with us.
One of my hallucinations, or so I thought, during our trip to the ER was a feeling of chest pain and heaviness, but with all my meds, I don't think I could have felt chest pain.
I got it in my head that the professionals wouldn't see how seriously ill I was and I would die waiting.
I'm alive today, because through divine intervention, chest pain made it on my list of symptoms.
Reporting "chest pain" to the nurse didn't just get me "to the front of the line," it got me a CT looking specifically for pulmonary embolisms.
Unlike my friend, my emboli would not have been discovered. They were small but would have continued growing.
The message of the posting was not "tell the ER you have chest pain for fast care," it was "divine intervention exists."
Your prayers are working!
I'm saddened that of all my writings, this had been a stand out message.
Thank you all who continue to pray for me. The prayers are working.
Ironically, as J, X, and I decided to leave the ER, X pointed to his heart and said, "I hurt here." "Where?" I asked.
"Well, around here." He said, motioning around his heart.
I was about to turn his wheelchair around and drive it to the triage room when x saw the look on my face and said, "No, nevermind. I'm fine."
I've been listening to his heart at least daily. Its been sounding fine, and we drove out of there instead.
But sadly, it has started.
My predictionns regarding the healthcare system are here.
What was once isolated to overwhelmed, understaffed, poorly funded inner city hospitals has spread to what once were the safest places on earth.
As a young nursing student practicing triage, I was forced to send bleeding, assaulted women back to the waiting room and people who came in to restart life through detox back to the streets, because until they have a seizure, detox is not an emergency.
I saw patients grasping their stomachs and vomitting bile, but that still didn't earn immediate admittance.
What did?
Respiratory issues (we had a whole room where people could sit and take their nebs together) cardiac patients, mental status changes and severe injuries, the severity of which was judged by the triage nurse, the St.Peter of the golden gates that lead to health care.
People waited huddled feverish in the waiting room, sick and coughing for 18 hours only to be diagnosed with TB.
A cough doesn't put you high up on the emergency list. Having HIV with weight loss and a cough does, but there's no law requiring anybody to disclose that info, even if it will infect everybody the comes in contact with.
Now, my rural ER experiences have been comparable.
Be scared.