Monday, October 29, 2012

My Mom's Fault

I sit on my parents' couch, sipping tea and watching news updates on Hurricane Sandy. 

My kids are excited to be riding out the storm at Gramma and Papa's house. I feel blessed to have parents who would take on seven extra people so that we can feel and be much safer than at home with the looming threat of trees falling on our house. 

We have a fridge full of food, a bin of gluten-free goodies, homemade gf pumpkin bread and pumpkin muffins, and games with which to entertain ourselves should (when!) we lose power. 

Words like "catastrophic" leap out from the tv. The wind whistles between the houses. A four year old and a quilt keep me warm as I check on friends online and read a thought-provoking book about spiritual gifts. Despite the hurricane outside and the whirlwind of kids inside, I feel a sense of calm. 

Phrases like "fierce, strong Sandy" and the words "Tracking Sandy" across the tv screen elicit giggles from the younger ones among us. Gramma, however, would prefer not hearing her name every three minutes, especially not associated with damage and destruction. Growing up, I always told her everything was her fault...and now Sandy will be blamed for plenty! 

There is one thing I know for sure is her fault - that my family is safe and secure and I can weather this storm knowing whatever happens, we'll be ok. 

Sunday, October 28, 2012

Sanctuary

I creep into the room and quietly close the door, clicking the lock into place. Bumping up the heat a bit to make things nice and cozy, I grab my book and settle in for some quiet reading time.  First I stop, steeping my spirit in the stillness of the moment and in gratitude for small blessings. If I'm lucky, my sanctuary will provide me with fifteen minutes or so of peace and space.  Well, not much space, actually, seeing as it's not a very big bathroom. You see, sometimes, when I do not even need to use the restroom for its intended purpose, I slip silently into the only room of the house where I'm afforded a bit of privacy, seeking balance and recharging my soul. 

Some find sanctuary in a church or in a place set apart for prayer or worship. I find sanctuary in silence, in uninterrupted thought, and yes, in the bathroom. Sanctuary can be found in the washing of a sink-full of dishes or in four minutes of watching the clouds move across the sky while pumping gas. There are living sanctuaries all around us - those people who, just by their mere presence, bless us with the gift of a feeling of belonging, of well-being, of love. We can create within ourselves a sanctuary - a place in our souls where we accept and love ourselves and others for who they are ... a place where we can replenish our spirit and the spirits of others in a well of joy and love ... a place of giving for the sake of love, and receiving with a sense of gratitude. 

When life's struggles, big or small, are getting to you, seek sanctuary ... wherever you can find it!

Thursday, October 25, 2012

A Halloween Tradition I Could Do Without

Last year, Halloween festivities were postponed due to a storm. A BIG storm. THIS big storm.

This year, we have a lot to look forward to. According to the news stations, Hurricane Sandy is heading our way. She may dump lots of rain, possibly some snow, and bring along some high winds for good measure ... just in time for Halloween. Again. 

From my NBC newsfeed on Facebook
As a New Englander,  I'm always skeptical of weather reports and whether the weather will be as bad as predicted. As someone who journeyed through Storm Alfred last year, I may tend to take forecasts a little more seriously this year. Thankfully, we have our Guide to, well, guide us. We have flashlights, candles, and glow sticks at the ready. We're tuning up our senses of humor. And we know that, if we need to evacuate our house in the middle of the night, the emergency shelter on the hill is more dangerous to get to than my parents' house forty minutes away - and should we invade my parents' house, we will want to arrive with lots of coffee if at all possible. 

Hopefully things won't be as bad as currently predicted, but whatever happens you'll be sure to hear about it in the further adventures of the Rannygahoots. 

Wednesday, October 24, 2012

StressFULL


Suffocating under a mountain of stress, I'm finding it difficult to function. 

One financially taxing situation after another is impairing our ability to pay for the basics. And by basics, I mean a roof over our heads and electricity.

My breath catches each time the phone rings as I await liver biopsy, bone scan, and follow up celiac testing results. Ocd adds to my struggle not to worry as I wait.

Sleep is not coming easily and is not of good quality, making my stress all that much more stressful. The energy to deal with all of this just isn't there. 



I sit. 

Breathe.

Pray.

Focus on what's important. 



Although we're once again struggling financially, my husband has a job, we have food enough to last us through the month, and the mortgage company won't complain too much if we pay the mortgage a bit late. 

Within a week, all the medical testing results will be in and I'll know for sure what's going on with my body - or at least these pieces to the puzzle. 

The sleep-disturbing drugs will hopefully not be necessary much longer. Until then, I sleep when I can and am thankful for any rest I get. And I thank God for the miracle that is coffee. 


Breathing in gratitude, exhaling worry, finding my way back to Peace.

Saturday, October 20, 2012

You Don’t See That on the Big Road

I admit it – I’m a planner. And I like things to go as planned. Sometimes I count too much on things going as I think they should. I have gotten better at letting go recently, though. If there’s one thing living with psoriatic arthritis has taught me it is that life is not predictable and nothing goes as planned. 
Not the Big Road

Then there’s my husband. He doesn't plan anything. It’s a challenge to get him to plan dinner when it’s his turn to cook. When things don’t go as planned, he just goes with the flow. I have no idea how he can possibly operate like this, but he does. I continue to try to improve my patience with him when he's lad back about things when I'm stressing. 

It didn’t strike me as odd, then, that when we passed the exit we needed to take to get to camp and were essentially lost (ok, we had a GPS, but who really trusts those things anyway?), that he didn’t consider it a problem. He simply got off at the next exit and trusted the GPS, which took us on a road that didn’t look at all promising to me.

  
"Well, this is an interesting road!" said my husband - the
 road looked as if it just dropped off into nothingness!
I took a deep breath and relaxed. I trusted my husband to get us where we were going. I took a deeper breath as I glanced at the gas gauge, and trusted there would be a gas station somewhere on this road through the wilds of New Hampshire. 

Pretty!
We saw some awesome sights on our detour: a really cool log cabin, wildlife, not-so-wildlife, beautiful trees framing a reflection pool-like pond. Each time, the love of my life commented,
“You don’t see that 
on the big road!” 
At first, as I was still working myself into a laid-back attitude, I found this slightly amusing, but mostly a commentary on my need to stress less and enjoy the scenery more. As we got farther off the beaten path, the words brought a genuine smile to my face and to my heart. 

We found a gas station. We made it to camp. But that's not the important part. The unexpected journey - the things we wouldn't have experienced on the Big Road - will remain in our memories and hearts forever. The lesson in the blessings of missing an exit, or making a wrong turn in life, will remain with me always. And maybe next time my heart will leap in excitement rather than worry over the change of plans. 


Wednesday, October 17, 2012

What to Wear?

Tomorrow is the big day! 

I dropped the kids off at my parents' house this afternoon for a sleepover so I'd have plenty of time to prepare and so Jim and I could get an early, unhindered start in the morning. I stopped at the store for supplies, came home and rested at bit, and then got down to the task of picking out what to wear for the big event. 

Ruling out more than half my wardrobe, I finally settled on something that seemed a good fit for the occasion. It's not as fashionable as it could be, but is very functional. Pajamas bottoms and a comfy long-sleeved shirt are appropriate garb for a liver biopsy, aren't they? If only I owned fuzzy slippers to complete the ensemble. 

Now I go to bed a bit early, as I have to be at the Procedures Center by 7AM. Not exactly a hot date with my husband, but hopefully the biopsy will provide needed answers so I can continue forward with psoriatic arthritis treatment. 

Prayers welcome. 


Pain Relief

There are different kinds of pain. These past few weeks there hasn't been much I can do about physical pain. With concerns about health problems, a busy season in our homeschooling year, and financial stresses brought about by medical and vehicle issues, I wasn't finding much time for me - or for nurturing my spirituality. Emotional and spiritual pain are things I take seriously, and so off we went, to a place of healing, where I could hopefully regain spiritual and emotional balance. A sacred space. Somewhere dear to my heart and good for my soul. 

Camp Calumet Lutheran in New Hampshire.



My heart leapt as I glimpsed the mountains in the distance. Home. I was going home. 




Calumet greeted us with a beautiful, dusky lake. A walk barefoot in the sand was just what I needed - that day, and in the days to come. To feel the sand between my toes, to feel more connected with and to the Earth was a blessing beyond measure. 


Connecting with old friends and making new ones, we settled in for what proved to be a fun and inspiring weekend. 

There is something about a campfire that says community to me. As we gathered to sing, laugh, tell and listen to stories, and share our faith, I couldn't help but watch as the firelight danced on my children's delighted faces. Whether resting my head on my husband's shoulder or cuddling a child or two on my lap, campfires were a time of family togetherness, as well as "Calumet family" bonding.

Out on the lake with my children, a sense of calm washed over me. The lapping of the water at the side of the pontoon boat; the children's excitement and wonder as they watched loons dive beneath the water's surface or a bald eagle soar over the trees; and the beautiful vistas soothed my soul in a way that not much else can. 

Each morning and afternoon I sat on a bench overlooking the beach and beautiful Lake Ossipee. Sometimes I sat alone, in silence, sipping coffee. Other times, I chatted with another person or two. Most of the time, my children were playing peacefully on the beach as I looked on, giving thanks for the blessings they are and those they bring to my life. 

As the water caressed the shore, I felt God caressing my spirit, reassuring me, calming me, centering me. 

A couple times, on the way back to our cabin, I made a brief stop at one of my favorite places at Calumet - the outdoor chapel. Serenity lives there. 



 The weekend went by much too quickly. On the last morning, we found it difficult to say goodbye to this place. The curve of the beach called to us to walk it one more time. The bench welcomed me for one last time of prayerful rest before our journey back. Back to busy. Back to health issues. Back to struggle. 

Back, but not the same. 

Refreshed. 
Renewed.
Centered.
Joyful. 
Blessed.









 
 
 
 
 
 
 
 

Friday, October 12, 2012

Not JUST Arthritis

I have arthritis. Well, that's not completely true. I do have arthritis, but not just arthritis. I have Autoimmune Arthritis. 

People with arthritis often have stiff, painful joints upon waking or after a period of rest. Some have pain throughout the day. Some develop deformed joints, making walking or using their hands painful and difficult. 

People with Autoimmune Arthritis experience that, too, and so much more. They get ten hours of sleep, get up to go to the bathroom, and feel like they've run a marathon. They make a trip to the grocery store and halfway through, out of nowhere, their body gives out. Their joints get painfully swollen for seemingly no reason. Their bodies are attacking themselves.


There's arthritis.

Then there's Autoimmune Arthritis.

When people typically think about arthritis, they usually envision Osteoarthritis (OA). OA is a mild to severe form of arthritis affects primarily the weigh-bearing joints as a result of injury, age, or wear and tear.

Then there's Autoimmune Arthritis. AA includes primary joint diseases that have an autoimmune component and also affect soft and connective tissues and organs. Autoimmune Arthritis diseases include Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Primary Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease, Juvenile Arthritis (JA), Mixed Connective Tissue Disease (MCTD), and Undifferentiated Connective Tissue Disease/Undifferentiated Spondyloarthropathy (UCTD/USpA). 


People with arthritis treat their symptoms with acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDS, such as ibuprofen), narcotics, cortisone injections, physical therapy, joint replacements, and other therapies.

People with AA treat their disease with those, as well as tumor-necrosis factor (TNF) inhibitors, disease-modifying antirheumatic drugs (DMARDs, including the chemotherapy drug methotrexate), and immunosuppressant drugs. 

Please visit www.IAAMovement.org
So when I say, "I have Psoriatic Arthritis," what I'm saying is, I have a debilitating and sometimes disabling disease the affects every joint in my body, as well as soft and connective tissues, and often makes me feel as if I've been hit by a bus before I even get out of bed in the morning. 

It doesn't mean that I'm not an effective parent, caregiver, or friend. It just means I have more tricks up my sleeve than the average person and have more time on my hands for reading, talking, singing, and being silly. 

It doesn't mean I'm a miserable, unhappy person. It means that even though I live with pain and PsA-imposed limitations, love and live my life to its fullest, in gratitude for every breath, every step, and every smile. 

Please visit www.showusyourhands.org!
It doesn't mean that I can take an aspirin and get on with life. It does mean that I get to relax for three hours in the infusion center while somewhat scary drugs drip into my veins so that I may spend a good portion of my time feeling better and not needing to make use of my mobility devices. 

It means I get to slow down, appreciate the small things and the not so small things, polish my sense of humor, continue to learn patience, and choose to laugh rather than cry. 

It means that when my hip dislocated while I was trying to get out of bed, there were tears streaming down my face not from pain, but because I was laughing so hard at the fact that the first thought that entered my mind when it happened was, "Well, that will make it easier to get my leg to move where I need it!" 

If someone mentions they have arthritis, please don't assume it's JUST arthritis. 


Thursday, October 11, 2012

Suffering

I'm suffering horribly. It's bad. Very, very bad. I lay in bed in the mornings, not wanting to get up. Once up, I just want to go back to bed. When I'm out, I want to get home. When I'm home, I just want to be doing nothing. Not reading. Not wasting time on facebook. Just - nothing. 

I'm suffering from a total lack of Motivation. 

Motivation seems to have packed her bags and left. I know my friend Greg hasn't seen her, because he just posted on facebook that she hasn't been around all week. Perhaps Motivation went on vacation. Can Motivation go on vacation? And what's with taking Productivity and Incentive with her? It's just not right.

Wherever Motivation has gone, she's kept well hidden. Should she ever decide to return, my house might look better, my kids might eat better, and I might get things accomplished. Until then, I'll suffer through the doldrums of doing nothing. 

Tuesday, October 9, 2012

The Brick and The Need


A four year old discovers a brick in the middle of grass and picnic tables at a park. She carries it across the park to where her family is, asking if anyone knows where the brick came from. Her six year old brother excitedly explains that there's a brick walkway not too far away that's missing a brick. The mystery has been solved. The two venture to the walkway, and the four-year-old places the brick back in place, pleased with her work. All is now right in the world.

Our van was broken into - no windows smashed, just a door unlocked and the entire vehicle rummaged through. Food pantry donations, a cup half full of change, and bags of clothing ddonations were stolen. An iPod, a case of cds, and other valuable items were not. A then five year old suggested we fill a bag with food and leave it out that night in case the person was still hungry - with a note saying they didn't need to break into our van, they just needed to ask. He saw not the criminal activity, but the need. Only food, change, and clothing were taken, after all. We left nonperishable food and a note out every night for a week to no avail. Several weeks later, some of the clothes were returned, dropped off during the night at the bottom of our driveway. 

How many times have we found a brick out of place, and taken care of it as well as the four-year old? Or do we step around or over the brick, leaving it for someone else to deal with?

How many times have we seen beyond misbehavior to motive or need, and found an opportunity to help instead of a reason for anger?


What if the brick was a person - perhaps a person who rubs you the wrong way, or believes differently than you, or is very much not as clean / crunchy / conservative / Christian / cool / insert your adjective here as you'd like them to be.

So many times in our lives, we cross the street to avoid the run-down house and the people who live there. Should we instead bring them some fresh-baked muffins and offer to do a little landscaping for them with the mulch we have leftover from our own lawn improvement project?

We avoid the newcomer to the group because she seems a bit odd, or needy, or more different than we think we're able to handle, instead of dropping our presumptions and getting to know the person.

Stepping around the homeless person while looking the other way, we fail ourselves. We deny the very basic part of ourselves - our humanness. Why not acknowledge the human being who is before us with a smile and kind word, if not a cup of coffee and a granola bar?

Viewing someone of a different religion or belief system as somehow lesser than people of our faith, as damned, or myriad other negative things does nothing but go against one of the basic tenets of most religions - that our higher power, rather than ourselves, is the one who is to judge people. You don't need to agree with someone's beliefs to respect them.

What if we treated each of these people, and the other "different" people, with the respect and kindness with which we expect to be treated - like we would want to be treated if we were in their situation? Why don't we tend to these bricks with as much diligence and respect as the four year old cared for her brick? Why don't we see the need - for food, money, friendship, kindness, respect - beyond how we perceive the situation or the person's actions? 

Perhaps we can learn by watching children. Their natural tendency toward kindness and seeing the best in people and the world is worth a second look. 



Thursday, October 4, 2012

Good News!

The past week has been one of my toughest yet. Major psoriatic arthritis flare that got better and then much worse. But, as always - and even though I'm typing this post with my thumbs because my fingers are too swollen and painful - there's Good News! There's always Good News, you just need to know how to see it!

Good news - we're putting you back on medication that could potentially kill you so you can get off the medication that will kill you sooner rather than later. 

Remicade is a life-changing drug for me. I was taken off of it for possible liver complications and am finally being put back on it, which will hopefully again provide a vast improvement in my health. In going back on it, I should be able to get off the liver-injuring drugs I'm currently taking to make it through the day. The scary thing about taking Remicade, is that Remicade can be a scary drug. The warnings go on for pages. The possibilities of health complications are seemingly endless. Yet I look forward to the phone call letting me know when I can once again spend several hours hooked up to an IV getting this amazing substance pumped through my body.

Good news - your daughter has high CRP (c-reactive protein) levels, indicating imflammation throughout her body. She most likely has an autoimmune something-or-other like her mother!

My eldest daughter has been having joint, pain, and exhaustion issues since she was four. She's ten. Following bloodwork ordered at a doctor appointment for inflammation in her foot, her crp levels came back elevated. As heart-breaking as it is to think she may have inherited PsA from me, getting these results means we can move forward toward a diagnosis and possible treatment rather than being blown off by the pediatric rheumatologist and waiting until her body is damaged permanently, as mine was by the time I was diagnosed. This is the first time in six years that any tests have shown that she does have the inflammation that's been there all along. She will not go through over thirty years being told it must all be in her head or myriad other ridiculous things before receiving a diagnosis. This is excellent news.

Good news from a friend - "my husband is disabled." (Not MY husband - a friend's husband.)


A friend's husband has been officially declared disabled by the court. This is amazingly good news, as it means further treatment options for his work-related disabling injury, and part of a huge financial burden lifted from his family. It also means less stress for the family, who have been fighting to get his medical care and compensation covered so they can get back on track financially - and all the emotional and mental health financial stability brings. 




Good news - you'll owe us even more money!

And the most excellent news of the week - my parents have loaned us money to go on a family weekend at our beloved Camp Calumet. It is not only a much-needed family get-away, it is a huge blessing to my spiritual and emotional health. Right now, my mind is too cluttered with medical concerns - both mine and my daughter's - pain, swelling, appointments, treatment options, and so on, and I've been finding it more and more difficult to find those quiet moments of breath and prayer and connection to God's healing love. That we are able to take this trip is a blessing beyond description and there aren't words of thanks meaningful enough to express my gratitude. 

Good News abounds! 
You just need to recognize it when you see it! 


Wednesday, October 3, 2012

She's How Old?

"So Mama, remember I want to be a ...what's it called? Forensic pathologist?"

"Yes..."

"Can I start learning it now?"

"Sure! First you need to learn all the parts of the body - there are LOTS - and how they work."

"And I have to wait until medical school to learn on a dead human body, right - what's that called again? Will that be like when I'm a teenager?"

"Yes, it's called a cadaver, and you need to wait until you're in medical school - so when you're 20ish."

"Good. Now I need my mamamilk."

Ah, the joy and insanity of having an incredibly intelligent, somewhat scary, nursing four-year-old. 

Monday, October 1, 2012

Much Ado about Bottoms

"Is this a girl skirt or a boy skirt?" asks my four-year old as we sort through a bin of Autumn clothes, looking for clothes that might fit her and her seven-year-old brother and sorting out clothes that were too small and we might give to friends. 

"I don't know ... what do you think?" 

"It could be either, I suppose. But can I have it? I really love it."

"You can have it if it fits."

"Yippee! I'll go try it on now!"

Now I'm going to say something that you may find shocking, so hold on to your britches...

You see, a skirt is a skirt. 

Just like the sky is the sky. 

It's that simple. 


Some people have huge hang-ups about something as basic as clothing, and can't imagine why a boy would wear a skirt, or a dress for that matter. Well, at least that's questionable here in the United States. Amongst some people in the United States, anyway. 

I've seen many boys and men in clothing that meets the criteria of a skirt or a dress right here in good old New England. Every Sunday, the pastor of our church dons and alb, which is very dress-like in appearance. A man who frequents one of the stores in town that I also frequent wears a dhoti kurta, as is traditional in his family. An African American man and his son in our neighborhood celebrate their roots by wearing traditional African clothing. Male friends of ours have known to rock kilts upon occasion. At least one of my kids' male friends wears dresses and skirts at times because he finds them more comfortable than pants, as do I.

We have child whose favorite color used to be pink, who has worn dresses and skirts, who used to have tush-length hair, and is perhaps the most "boyish" looking boy in our family. 

We have a child who, as a toddler, cried at the sight of a pink piece of clothing; who has always preferred blacks, browns, greens and blues; who adores both skater clothes and fancy dresses; and who didn't get the nickname "Danger Girl" for nothing.

"But the child will be teased by his peers!" I hear you exclaim.  

Not if his peers are taught to accept people for who they are on this inside and not what they wear. 
And even if he is - odds are he's not a child who fits into the box society has created for him and would get teased anyway. You can bet his parents are aware of the clothing choices he's making and are there to support him. 


And if you want to talk about teasing, don't think the manly people of the world who wear their pants below their butts, showing off their ever-so-lovely undergarments are impervious to negative comments. 

"But skirts and dresses are for girls!"

Do all the girls you know only wear skirts or dresses - or do they wear jeans and other types of pants? Pants are for boys, you know. It's improper for a lady to wear slacks!!! Oh, wait - it's not??? Ah, that's right. Current cultural beliefs state that it's ok for girls to wear whatever form of clothing they want. It's only boys who are being discriminated against. 

Think about this as you look at the sky today ... not the girl sky or the boy sky - the sky that, no matter what it looks like, no matter if it's blue or pink or purple or orange, is still just the sky. 

What kind of world would this be if we saw people as people, love as love, clothes as clothes, jobs as jobs - without perceiving gender as the most important distinction between the types of each of these?