30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Sjogren’s Autoimmune Disease, a few others (boring!)
2. I was diagnosed in: 1999 and 1007, respectively
3. I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: focusing on basic daily needs at home
5. Most people assume: Being dry is no big deal if you sip water
6. The hardest part of mornings are: Trying to slowly and safely open my eyes
7. My favorite medical TV show is: No TV, movies and old dvd's only
8. A gadget I could not live without: The reassurance of having my epinephrine needle handy though I haven’t used it yet
9. The hardest part about nights are: Having to do a lengthy routine when I'm so tired-I make it worse as I am a night owl
10. Each day I take__ pills: (no comments please) 7 pills, 6 meds for eyes
11. Regarding alternative treatments I have tried: Acupuncture, chiropractic, yoga, relaxation techniques, massage, countless supplements, naturopathic doctor. None really helped and most supplements hurt due to salicylate sensitivity
12. If I had to choose between an invisible illness or visible one I would choose: Very hard. I might choose visible if I could talk and see as freely as before
13. Regarding working and career: I would love to be able to work to help support my family, but my health does not allow. I am thrilled to now be able to take care of the basics at home again and help facilitate my daughter’s learning
14. People would be surprised to know: Some days I cannot drive due to eye pain and I have 50% esophageal functioning
15. The hardest thing to accept about my new reality has been: Constantly disappointing people because I cannot participate in all the activities I once did before
16. Something I never thought I could do with my illness that I did was: Return to school by Distance Learning
17. The commercials about my illness: Fibro-for drugs possibly/ Sjogren’s- none?
18. Something I really miss doing since diagnosed: cross-stitching, being carefree outdoors in the wind and sun
19. It was really hard to give up: most normal foods due to allergic reactions
20. A new hobby I have taken up since I was diagnosed is: carting miniature horses, raising rabbits and writing
21. If I could have one day of feeling normal again: I would hope to be able to attend my children’s graduations/weddings
22. My illness has taught me: To be more patient and tolerate others who I do not understand
23. Want to know a secret? One thing that people say that gets under my skin is: You look great!
24. But I love it when: People do not pressure me socially and recall not to wear fragrance near me, especially in my home where it lingers and I react for days to come
25. My favorite scripture that gets me through hard times is: Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."....I've found him faithful
26. When someone is diagnosed, I’d like to tell them: It is time for ‘Plan B’ and God is good and will give one. Find an inner circle of trust-worthy friends, look for the Grace and life will go on.
27. Something that has surprised me about living with an illness is: The smallest things mean the most now. Life is still beautiful, the sky is bluer and loving is more passionate
28. The nicest thing someone did for me when I wasn’t feeling well was: believed me
29. I’m involved with Invisible Illness Week because: I want to help raise awareness and support others
30. The fact that you read this list makes me feel: Really grateful that you took the time to read and hopeful you will believe those whose illness is invisible. It saves lives.

Wednesday Photos

Here are some photos of how we spent the last week of our summer vacation at home...lots of good old free activity within our own area. I ended up having some Pre-Class assignments to do and needed to rest, but got in on some of the action. We visited an art museum in the area and took the girls to the Safari Park at Great Adventure-no rides, mind you. (What parents!) We were also blessed with complimentary tickets to a 5 stage outdoor concert not too far away with many Christian musicians. Amongst my favorite and most talented in my opinion, was Phil Keaggy. I did the math and realized my first concert seeing him was 32 years ago, so fair to say, I am getting old while he seems to simply be getting more adorable. We ended our week with a spontaneous bonfire. Hubby just hauled huge slate rocks in a circle and dug our own fire pit in the yard. Probably just another one of those situations where we were in need of another 'permit' this summer.......God provided much grace for me to do a few things that I normally would not always be able to participate in. As our girls would say 'Way Cool."

Growing Dreams

I’ve been living life in basic survival mode for a long time now. Life easily becomes about making it through the day. At times, taking care of a chronic illness and attending to family needs and expectations causes my cup to be quite full. That is when I am reminded to take life as a book and read at my own leisure as well, that balance is good, and so is time to explore a few dreams left living.

In this book of life, there are some chapters that I am a bit afraid to live and can only do it through Grace. I’ve made mistakes, I’ve set goals and dreams and watched them burn. I’m thankful that God always has my best interest in mind, that all from his hand is good. Though, considering new goals takes courage and at this point, a realistic consideration of abilities. Since the new year, I have felt a nudge, this gentle push to move me into action. Some thing more the than monotonous pass go and do not collect two hundred dollars as in a monopoly game.

So, I have prayed and listened and I’ve listened some more. I’ve mostly watched where God has already planted my own two feet the past few years. And I’ve spent a little time wondering where the next stroke on the canvas of my life will lead. I know now that it will not be even remotely what I had planned. I am taken back that God is again faithful to make his vision my own.

God has spoken to me through people, and through his scriptures and also significantly through the reading of Oswald Chamber’s writings this year. I’ve been reminded that God often can use the weak and I like what Chambers has to say:

“What is my vision of God’s purpose for me? Whatever it may be, His purpose is to depend on him and on his power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish-his purpose is the process itself......It is the process, not the outcome, that is glorifying to God.”

I like that quote as it has played a role in getting me ‘unstuck’. I now feel I can set a goal and not be all consumed with whether or not I will be able to complete it. I haven’t told many people as possibly some times in a life book, we fear the words themselves, finally written or even whispered a loud, may cause one to miscarry the growing dream. But I have to share it now, as my time and priorities will all need adjusting and I will not be nearly as visible around the internet as I have been. This blog may go quiet again for a long while until I adjust.

This week I am starting back to home educating my daughters, but am also beginning a two year Spiritual Formation and Direction Program for myself. As life would have it, I’ve paused and leaned long on this leading. I’ve had several affirm my simple desire to use it to continue befriending and companioning the chronically ill and hurting people that come into my life, and gain a little more experience to do so. I am only committing to one semester at a time and will determine the practicum and completion, depending on my own health. I think I will enjoy it a day at a time this way. God has been faithful to steady me and remind me that any eventual outcome or none at all is just fine. It’s the moments, the days and the experience that counts.

At times I even feel a bit selfish in all of this, as I have enjoyed preparing for this: planning, purchasing and beginning to read the books with the excitement of a little child. Even more so, is that I have grown to love relating to others who are ill. They are fun, creative and courageous people, which makes no sense for people in pain, but I’ve found it true and as it turns out, loving is good for our souls. My loving and giving in the smallest of ways helps me. It’s really as simple as that. I want to be a friend, a companion, that equally encourages another’s life and spiritual journey and I’m done running from this seed of a thought that was planted in me long, long ago which I feared.

God comforts me through Oswald Chambers words, “His training is for now, not later. His purpose is in this moment, not way down the road in the future.” So, I am fixing my eyes on God, rather than if I can meet the ultimate goal. I will attempt to be mindful to live each day, and we will all learn together side by side- each moment, in attempt to be obedient to our Guide. I will give this a try. There, I said it and wrote it.

See I am doing a new thing.
Now it springs up; do you not perceive it?
I am making a way in the desert
And streams in the wasteland.
Isa 43:19

Wednesday Photos

Oh How the Years Go By!

Summer Slipping Away

I’ve been watching them. Watching the girls grow what seems like inches this summer out my window as they meander along, care for their animals and swim. Son is now towering over me and I don’t know his schedule day to day and this has become the norm here.

It is a different experience to slip under that water with children 4 years older also. I have been able to swim this season with the purchase of a new salt water pool, without chemicals so it has been a pleasure once again to take the plunge with them. Then, all of us have been delighted to learn that our new puppy, just 8 months old, is an excellent swimmer as he skims the surface and beats me to the water balls.

The past 3 years, my son has vacationed independently. I am getting used to this. I did the same about his age I recall, as I watch him venture out of the lane, destination beach house. Other times to my in-law’s cabin in the Adirondacks, where love first made my own heart flip and memories for me come flooding back. It is amazing to me that he is now about that age I was then. Time does not stand still!

Next summer they will be even taller. I’m ever so aware that calendar will turn soon and so will the leaves.

I wonder, really, how many summers I will have left to cherish like this.......? Soon my youngest and I will share our fall birthday month, but I will be 47, while she will be just 11. I think to myself, twenty would be a miracle, ten maybe, and then possibly none? I swallow hard on that one, but how it makes me savor the day.

Lately, I have been visualizing a calming picture of walking hand in hand with God through each day. That is what it feels like when I am trusting him. Some days, I am strong, moving confidently side by side on the trail. Other days, I feel God’s hand gripping me tighter in my weakness, helping me up, guiding me and teaching me to stand firmer and trust him deeper as I make my way forward onto more arduous steps.

How blessed I am to look back down the path and see it strewn with God’s provision and faithfulness.

It will be time to pack away the pool in a few short weeks. I will be left to swim in box upon box of the girl’s warmer clothing to fill their dresser drawers for cooler days ahead. Their vacationing will come to a sudden stop as the cabin and shore house will close to the routines of autumn. I’d like to think I’ve learned more this season of the blessings of solitude, rather than viewing at times what in the past has felt a bit like loneliness. There is a enormous difference, I am learning.

I’m getting prepared. I do love autumn, and so I soon will be ready to catch the new season and gather leaves together- ready to make each moment count.

Oh give thanks to the Lord; for he is good: for his mercy endureth forever. Ps. 136:1

Friends Meeting Friends

Some of my most favorite people live inside my computer. There, I said it and it is true. Some days, I think how wonderful it would be to gather them all up to be my neighbors. Yet I know, God has set me in this place for a purpose and them in theirs and so I must enjoy these friendships for what they are and be content. I cherish the connectedness and find it is another area in which God has blessed my some times small life here.

I’m amazed with God’s creativity and surprises. From faithful and frequent notes in my e mail box, blogging friends and to precious people in online studies like the ones here. I’ve had several people offer help with my allergic food elimination diet when I’ve been at my wits end and give loving advice for treating my daughter’s Lyme disease. I have even come to know my family history more since the new year, from a online friend who freely offered to do my family genealogy 'just for fun’. There are some I’ve come to love as family and learned that one can choose them if you need to. And as Friends, there are some that have gone quiet for a while, but the connection we’ve shared remains valuable in the silent times even. After all, us Friends are good at silence...

Perhaps the most significant change this little screen has given me is the opportunity to exchange conversation on faith and to be where ‘two or three have gathered’. This has occurred for me in various forums and in online worship. Never did I really plan or expect to meet anyone face to face, but God had other ideas, as always, and much bigger than mine. Last year my family was afforded the opportunity to travel to Pennsylvania and experience a conservative Friends meeting. This was a good opportunity to grasp in physical life the broader scope of Friends on the internet with some like-minded faith. It was a gathered meeting and unapologetic in it’s sharing of scripture as vocal ministry. Then this past month I had a request to meet up at my meeting, Buckingham Friends, here with a recent internet contact. This came as a sudden surprise and how fun it was to meet and raise our voices together in song! (Yes, that’s right-my unprogrammed meeting here does have a hymn sing for 15 minutes prior to our expectant silent time.) Then, the highlight of our summer thus far has been for our family to meet a Friend and his family from the Netherlands who was vacationing on the East Coast of the US who we share a much longer history together.

Wim N. and I met online about three years ago when at that time, I had completely stopped attending any worship out of my home due to illness. When The Online Meeting for Worship shut down suddenly, we relied on a few e mail addresses we had along with other vital and instrumental Friends that formed Quaker Faith and Fellowship so we could continue on with our small group fellowship. Since then, the forum has slowly and steadily gained an international membership of 131 members and has a core group of committed members from various faiths and branches of Friends that worship together weekly. It has turned into an e-community, and has combined efforts with others to worship once again. As each member came and initiated taking on different roles, the contributions added up to where we all are today, all sharing this special place together where all are valued as equal and welcome. Kind reader, you are welcome to follow the link to QF&F, but encouraged if you do so to take the time to register, which is very simple, as then one is able to see a much larger forum than what is available to see to the general public, including blogs and the way we are slowly making more community planning decisions as Friends. Included there, also, is a much more in-depth history of our website.

So, for my husband Dave and I, meeting Wim for the first time at the train station here was like watching him walk out of our computer. After what has seemed like miles of correspondence over the net, I cannot fully put into words the happiness and memories that it has given me to meet in physical life after all this time and share a weekend together and to worship at the Arch Street Meeting House in Philadelphia. We discussed that we consider our internet lives to be ‘real’ as we connect with others and share in that which is eternal, but agreed that to get to meet in person is very special and I’m humbled he would give up vacation time and allow me to meet him and his beautiful family. Our family was blessed and hopes that many more physical meetings will occur from our ever-evolving community as well as other ones on the internet. The world seems enormous to me at times. However, every so often God graces me with opportunities to see that while it is large and we are all so different, we have much in common and the world of Friends meeting Friends is not so impossible.

Believing in Love

It was perfect, with a charming stone front, nestled in a wooded area with spacious rooms to spread out in, and even a bright airy room to claim as a school room. But the sudden phone call revealed that we had lost it, that hopeful bid in which I had prayed would be our next home.

We were meanderers moving frequently, never getting too attached to a place we’d call home, rather to each other. This time, our search was finally in the country and we were both old enough to be weary of the walk and determined this would be our last move. Our price range was so narrow, for me it was time to call off the search party. Not so with Tired Husband. He’s never given up easily on my dreams.

Step far back into our story and we were young love, barely grown up. I was just coming out of a slight slip off the straight and narrow that had previously been my life. Draw me a line and I’d cross it, roll me a rule over and I’d break it. But this guy- he was fun and he was a rock at the same time. He came from a family that was still together, that lived in the same home- on the same street- all his life. Go figure. That was not my experience. I was more than interested in the package deal, after all, he’d become my best friend.

It was a young love determined to last. However, I was cautioned to ‘let it go’ as young love is often too weak to last. The past kept whispering in my ear of all the insurmountable odds I’d been acquainted with all too well, but love is bold; it doesn’t stand still too long, calculating the risk. So, I slipped on the gold promise while far from home and we decided it best to return home for the wedding, and have our two ministers do the ceremony, one from the Midwest where we were living and one from back East, our family’s home. Yes, two, I was going for the guarantee!

I can still hear the clergy’s door closing behind me, leaving me alone with one of the ministers for premarital counseling and did I have any questions? Slightly shy at this point and with a quivering lip I managed to stammer out the all important one.

How does one make it last forever, a marriage, that is?

I got a bit lost in the long speech, but I still recall the words today: to keep the promise before God, believe in each other and let the words and the true promise of the cross empower you. I can close my eyes today and still see that wood cross at the front of the dear church we attended together at that time. And so, we followed just that and the years of practice led us to this place once again, searching for our final home, the one where we’d put our hands, feet and mark on the land and in the dirt for good.

So, excitedly Husband pushes the realtor print-out next to me on the table, of the last home left in our price range in the beloved area, but the address read ‘Goat Hill Road’. I quickly assured him I’d never live on a road with that name! But love believes and so agrees to schedule a visit to see what was apparently an old one bedroom cabin with an addition built on it.

Peering out the car window, it was obvious this home was completely over grown needing love. Driving up the long lane, one glance across the yard revealed one special tree, in what appeared to be in a tiny grove of ancient unkept fruit trees. Toward the base of it’s trunk, it had a hollow, distinctly formed in the shape of a heart. My heart flipped. It was precious as was the home, which was a blend of the old rustic cabin and a new contemporary angle-lined main part. I loved the distressed wood floors in the old portion and its plainness, which was slightly crooked compared to the new! There was beauty in it’s imperfections and it had land...more open land and that tree. The one that sealed the deal. The one that we were told to cut down as is was weakened by the hollow at the base and all the woodpecker holes in it, just destined to die.

I don't take down trees easily, no not at all.

We won the bid on that house and are going on eight years here today, but more importantly I am humbled to say, twenty-five years of marriage this month. The tree still stands. What some times looks dead just may be dormant and be about to bloom and bear fruit. That is, if we have a faith that does not die as it’s roots are firmly in Christ.

We have kept the tree, believed in one another and our promises together in the reality of the Love that was shaped in the wood.

.......The Lord will guide you always;
he will satisfy your needs in a sun-scorched land
and will strengthen your frame.
You will be like a well-watered garden.
Isa 58