Huffing and Puffing

Easter just passed me by this year. I barely remember it.

Last weeek was the kiddo's Spring Break which we heralded in with an exciting day at the Boston Marathon and followed it with two mad days of city exploring, albeit in the rain. By Thursday the kiddos were ready for a rest day, we had really been pounding the pavement and everyone was exhausted. They slept in, relaxed, read books, watched a movie... I took advantage of the time to catch up on all the laundry that had accumulated over the few days. There were meals to be planned and the fridge and pantry needed re-stocking, there was hair from the Oversized Dog all over the house and that needed vacuuming, there was toothpaste adorning the bathroom sink and mirror, (sometimes I wonder if they're actually finger-painting with toothpaste rather than brushing their teeth, honestly!) all in all this house needed to be whipped back in to some kind of order and passable cleanliness. By Thursday evening I collapsed into bed, exhausted.

Friday morning, when all I could muster as a good morning to Hubby was a breathy squeak, I knew I was in trouble. I had lost my voice, was completely congested, throat was extremely sore, my body ached and head felt as heavy as lead. I had a fever but the most worrisome symptom was the cough that rolled around in my chest. The secretions were thick and blood tinged, never a good sign, but I was managing to expel them and that was important. I knew that over the next few days I would have to be very vigilant in trying to get as much of those secretions up and out as I could.

Those of us with chronic inflammatory lung conditions, such as sarcoidosis, are at risk for developing something called bronchiectasis. The airways lose their elasticity from being inflamed all the time, they become lazy and not as effective in doing their job in helping to expel secretions. When secretions pool and just stay in your lung it becomes a perfect breeding ground for all kinds of viruses and bacteria, not least of all, those causing pneumonia. It was time to employ those coughing techniques that a respiratory therapist had taught me in 2007 when I was battling hard with an aspergillus infection in my lung.

I find the "Huff-Cough" (at least that's what I call it) to be the most effective. You take a deep breath and literally "huff" ten times, (it helps if you think of the Big Bad Wolf!) as if you were trying to blow out a candle but with your mouth wide open, lips apart, almost as if you are smiling and with as much force as you can muster. You have to resist the urge to cough mid-way through your ten huffs. Huffing will move secretions around and you'll feel that but don't give in to that cough just yet. After your tenth huff only then can you cough and it's best to cough with your chin dropped to your chest and your mouth and jaw in an "eee" position (almost like a smile) rather than in an "o" position. And you should be wonderfully and productively successful! Bet you didn't know there was a right and a wrong way to cough!

So, I spent the Easter weekend in bed, feeling totally miserable but grateful that it was a weekend and that Hubby could help me out, grateful for the phonecalls of concerned family members. I started antibiotics on Monday and am slowly starting to return to normal activities so all is well, or soon will be.

Meanwhile I'll huff and I'll puff and.......

Dancing Around the Edges

I've been silent for a while: a trip to the doctor in Denver, farewell get-togethers, a myriad of getting-ready-to-move details and sick children home from school all have put pause to my online musings. I also celebrated my birthday. I just turned 39, a year closer to the infamous 40, but for me, my sights are set on 50.

Last year my doctor told me that she thought I was never really going to get rid of sarcoidosis (it was the first time anyone had dared to tell me that and I so appreciated her candor).In many cases sarcoidosis goes into remission by itself and with time but in my case it has been too persistent, too difficult to control and seems to have too tight of a hold on me. However, she tells me that if I can make it to 50 then I may see it becoming easier to control and more willing to loosen its grip a little, and perhaps I'll be able to pull back on some of the heavy-duty meds I'm on, all I suppose as hormones change and the immune system calms down a little, as occurs naturally with aging. So, my birthday ritual this year included a silent homage to the aging process and a respectful salute to the next 11 years! And I'm dreaming of a big birthday bash when I'm 50!

Last week my doctor confirmed some more sarcoid symptoms. She told me that I was "dancing on the edge of some major disease activity". She brought up that stress issue again. Oh my, now I am trying so hard not to stress about being stressed! With some reflection though I have come to the conclusion that moving house and across the country is a major life transition and I have decided to try to accept that of course I am going to feel stressed. I shall try to just keep moving through it knowing that all shall be well again in time. In the meantime I shall keep dancing on the edges, and while I'm at it I shall dance with grace and joy and loving the music...

Guilty

I've been quiet these past few days. It has been a time of laying low, resting, sleeping. I had a burst of energy on Friday last and cleaned the house again, preparing optimistically for the possibility of more house showings. It wasn't just any type of cleaning either. It was that deep cleaning that requires, among other things, a jar of vinegar and a toothbrush to try to get rid of hard water buildup in the bathrooms and kitchen. I didn't quit until 7:30 that night when freshly cleaned and shiny floors completed my cleaning blitz. I was happy, satisfied and even remarked to Hubby that perhaps this latest sarcoid fog I've been under is lifting. We smiled happily at each other at the promising thought.

Saturday and Sunday were quite different though. Gone was the burst of energy. I was reminded again of the conclusion that I have come to over the years that when in an active sarcoid phase there is a limit to the amount of energy one can "spend" before needing to rest and replenish again. I picture my energy as sitting in two beautiful clay pots resting on an old fashioned weighing scales that demands to be kept balanced all the time. Energy taken out or spent needs to be counterbalanced with restorative practices, sleep, rest, quiet, so that energy can be returned again, thus balancing the pots.

This latest active sarcoid phase has surprised my doctor and I. In March of 2010 I started a new medicine regime that requires IV infusions every 4-6 weeks. It was a bit of a desperate measure at the time and one undertaken after much deliberation and weighing of benefit versus risk on the part of my doctors as this medicine carries some pretty hefty longterm side effects. Overall it has worked marvellously well. It took some time to arrive at the optimal dosage and even though the symptoms never fully abated, I was definitely feeling much better than I had in years. Over Christmas I started to develop more sarcoid symptoms, an irritating dry cough, increased breathlessness, daily low grade fevers, aches, a tiredness that was hard to shake, increased tingling on the left side of my face and fingers and a slight tremor in my hands. I consulted my doctor, an internist in the area that has seen me through a lot of things. We talked about stress and anxiety and the possibility that an increase in both as a result of our upcoming move may be triggering something. "Do you really think that stress is a contributing factor?" I asked him. "Most definitely yes" he replied, "I strongly believe that our emotional, psychological and spiritual health greatly affect how our bodies handle chronic disease." We came up with a plan to bring my next infusion forward by a week and make some other medication adjustments. They haven't worked...at least not yet, but this week I will travel to Denver for the last time to meet with my doctor there and see what she might suggest.

In the meantime I am left with this nagging thought about the interconnectedness of chronic disease and emotional/spiritual health. I have to chase away, once again, the guilty feelings that this is something that I have drawn on myself. Am I not working hard enough at healing any emotional/spiritual issues I may have? I take on massive loads of guilt when I think about the effect this may be having on my family. (It doesn't help when I remember an experience I had with a native Apache seer many years ago, a story that I shall save for another time.) I have been down this slippery slope before. It is a difficult one and to climb up out of it again I need to remind myself about compassion, and compassion for self. I could write so much more about this, but I am tired!

On a bright note though, I did get to go in the recording studio a little this weekend. The band I have played with over the years, Houseblend, wants to lay some tracks down before I leave. We've only been talking about doing this for about five years or so and, as always is the case, it is my pending move that has finally motivated us to actually do it. I'll keep you posted....

A Dilemma

So, I have to admit that this project is my first venture into the blogosphere. I don't even read (or is the word "follow"?)that many blogs. Niamh's desire to raise awareness of those living with chronic illnesses and for sarcoidosis in particular though has inspired me to step outside of my safe zone and share my story.

I find myself presented with a great dilemma in the midst of this. Over the years of living with a chronic or ongoing disease I have worked hard on developing an attitude of positivity and trying to see the best in everything, and although not always successful at it, it has helped me tremendously! After all, one figures out pretty quickly that most people don't really want to hear about your aches and pains, it makes them uncomfortable, they don't know what to say, they don't understand sarcoidosis, it's pretty much a conversation stopper actually! And I understand that, I really, really do. More importantly though I also have come to realize that everyone carries their share of sadness, pain, loss, call it whatever you will. A lovely friend of mine has a quote from Plato posted on her refrigerator for her family to see "Be kind, for everyone you meet is fighting a hard battle". The older I get the more I realize and appreciate just how true this is...and I hear that call for compassion, that call to go deeper in relationship, the call to listen not just with my ears but with my heart, to try to walk in another's shoes, to not judge....

My fear in blogging about my experiences with illness is that I will present myself as if my life is terrible, because truthfully, my life isn't terrible, it's quite wonderful actually! There have been hard times, of course, but my life is rich and full and with the shadows have come lots of light. So that is my dilemma. I want to represent sarcoidosis and chronic illnesses but I am very unused to sharing the details so publicly. So bear with me as I figure this out and in the meantime "Be kind, as everyone you meet is fighting a hard battle".

My Story

I was diagnosed with sarcoidosis in 2003, a chronic inflammatory condition that primarily involves the lungs, although I probably had had it for a few years prior to that. Unusually, my initial symptoms involved my kidneys. For reasons that no one at the time could figure out, I kept forming massive and very painful kidney stones and had required multiple shockwave treatments to break the stones up so I could pass them. Since 2002 I have had no less than 12 such treatments, each one involving anesthesia and a day in the hospital. In the spring of 2003 I was experiencing night sweats, an annoying dry cough, wheezing and was pretty tired all the time. I also had some swollen lymph nodes in my neck. Truthfully I didn’t pay too much attention to these symptoms, I was pregnant and expecting my third baby, you don’t always feel your best when you’re pregnant! When the baby miscarried I found myself at the doctor’s office. He drew some blood, gave me a complete physical exam, ordered some x-rays and then told me that he thought I was very sick, so sick in fact that he told me to prepare myself for the news that I had cancer, probably lymphoma. My lasting memory of that time was driving home from the doctor’s office, alone, grieving the loss of our baby and wondering to myself, how in the world am I going to tell this to my husband?

Eight years later, I now know that it wasn’t cancer I had but sarcoidosis. When I initially received that diagnosis, those in the medical profession were almost congratulating me that I didn’t have the dreaded “C” word. The common belief was “you’ll be fine. It goes away by itself in a year or two, three at the most. About six months of treatment and you’ll be fine!” This turned out of course to be not true. Eight years later my treatment requires me to receive a medicine through an IV in the hospital every 4-6 weeks. Chronic inflammation in my lungs has caused permanent lung scarring, created a cavity in my lung, and caused my airways to become floppy and lose their elasticity. Any respiratory infection I get is cause for concern. I have experienced sarcoidosis on my skin, in my lymph nodes, spleen, sinuses, kidneys and lungs. I have developed a tingling sensation in my left arm, fingers and toes and left side of my face suggesting nerve involvement and arrhythmias suggesting heart involvement. To receive adequate health care I fly over 900 miles every three months to see a sarcoidosis specialist in Denver, Colorado.

I am a musician and I love to sing, it’s my passion and my job, but sometimes I simply cannot, there’s not enough breath. Sometimes when I sing long phrases it induces coughing fits where my lungs go into spasms. I have had to quit my job teaching movement and song to toddlers and pre-schoolers as it was becoming too hard to sing and move around the classroom with these active little folk. When I play outside with my children I have to stop frequently to rest, catch my breath or cough! When my daughter was five she asked me if the doctors could make me well enough to be able to play tag with her, this was what she wished for. Despite some pretty serious medication, the sarcoid remains active, refusing to go into remission, although I do feel better than I have in a long time and my quality of life has improved. During active disease spells I will need to go to bed in the afternoon so I have enough energy to get through the day. I will run daily low grade fevers and feel achy and “flu-ish” all over.

Sarcoidosis is a poorly understood disease. There is no consensus among medical professionals as to what causes the disease, therefore there is no way to cure it. The most common way to manage the disease is by trying to reduce inflammation and suppressing the immune system. This brings its own complications. Sarcoidosis does not rank high on the list of diseases that receive a lot of funding for research nor a lot of attention from the general public. Many people are unaware of how debilitating a disease it can be, how it can rob you of the prime of your life afflicting as it does mostly those between the ages of 30 and 50. Similar to other chronic diseases, someone with sarcoidosis doesn’t always look sick so those around them may not be sensitive to their needs and may place unfair expectations on them. It is not uncommon for a sarcoidosis patient to suffer from depression, often due to a lack of support and understanding and the constant battle to keep going. Sarcoidosis patients frequently have limited sources of energy to get them through the day.

When I first flew to Denver in 2007 to meet my current doctor she said to me tongue in cheek after reviewing my lung x-rays, “Well, you’ll probably never run a marathon but I think we can definitely improve your quality of life…” and she did, and no, I cannot run much at all really! But in June 2011, my sister will run that marathon for me!