Thursday, October 13, 2011
Monday, October 3, 2011
I have been thinking a lot lately about how miraculous our lives really are. I mean out of tiny cells and some miracle dust from God grows a tiny little human. This human is so small at first that we can't really see them without a little help from ultrasound. As a parent my job has been to protect this human and nurture them, help them to become autonomous, to make decisions (hopefully good ones) but to stand firm in those decisions. We do all this while the child is growing, testing limits, trying on new characters, scaring us to death and trying to remain a "baby" as long as possible. I live in a house full of teens and pre-teens and yes they are all females. These girls are my life, they are a cumulative effort of years of parenting, worrying, praying, and teaching. They are not an extension of me but they are constantly ex-tending me, stretching me to grow and change, to adapt. They are all truly beautiful human beings, each one with their own gifts to share with the world. They have been a little unit for quite a long time, the Thomas girls. They actually do not function so well when one is away at camp or spending a summer some where else. They need to all be together because there is a balance between them and when one is away the balance is well not in balance. The time has come when the balance has to be rebalanced because Echo, my oldest is leaving home. I was afraid to tell the other girls because of the "over" drama that has been occurring at my house for the past few weeks but they managed to keep it together. Some girls were happy and some were sad but all of them realized that the unit would never been the same again, the end was here.
Tuesday, September 6, 2011
Sunday, July 17, 2011
I pull up to the first Pharmacy which is handling my Methotrexate which is a "specialty" medication. I am pretty sure means they can charge you more money for it. I walk in and pass all the cosmetics, vitamins, and beach attire and head for the back corner of the store. The pharmacist welcomes me and takes my name and looks up the order. She is a small women of Asian decent, very pretty and sweet looking, I smile and wait. "Ok Mrs. Thomas we have your order ready" she says. I pull out my ATM card and swipe it, the register beeps. "Oh Mrs. Thomas I want to make sure you are not taking Ibuprofen with this medication," she says. I look at her blankly and say, "I take 800 milligrams of Ibuprofen 4 times a day." Her face goes cold and suddenly she looks not so nice and friendly, "Mrs. Thomas if you take Ibuprofen and Methotrexate together it can cause severe damage to your kidneys and can cause internal bleeding. You should talk to your doctor about this. I am sure she put you on the ibuprofen before you started the methotrexate and after about 6 weeks of the methotrexate you should have little or no pain and should not need the ibuprofen." I looked at her blankly and thought oh how ignorant you are of the realities of this disease. I wanted to actually yell at her but I didn't I smiled and said, "I also take Enbrel injections, pain pills, and muscle relaxants and my pain never goes away." We finish the transaction and I leave to go on to the next pharmacy to retrieve two other orders.
How do we educate people about this disease? How do we explain that Enbrel, Humaria,methorexate are not miracle drugs. They do work for some people but not for everyone. My only hope is that the drugs are preventing me from having further joint damage, I don't even wish or hope for them to remove the pain for it seems that I will just have to live with the discomfort. I do long to wake up in the morning and just feel good, to feel like I have the energy to face what is ahead of me.
Wednesday, May 25, 2011
2 Corinthians 4:16-18
That is why we never give up. Though our bodies are dying, our spirits are[e] being renewed every day. 17 For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
I am sure that my daughters were all sent from heaven as a blessing to me, they remind me everyday of the truth, the light, the freedom in Christ!
Tuesday, May 10, 2011
Saturday, May 7, 2011
The days passed until mother's day. What do you do for a mother who is dying, flowers, cards, presents all seem stupid and meaningless, you can not tell her you love her, not sure if she hears you. My sister and I decided that we would go to the hospital and pamper our mother. When we arrived we took the personal care kit from her side table and washcloths, we filled the basin with warm water and baby wash and began to give our mother a bath. None of the nurses had done this for days, she was sorely in need of a good washing. My mother stirred, could she feel it? We didn't know but we continued. There was a tooth brush and tooth paste and a little dipper with a sponge which I did not know what it was for. I thought about taking out her denture and brushing her teeth, scary to think about putting my hands in her mouth she could bite down not knowing what was going on. I asked my dad and he said that it was a good idea and that she hadn't brushed her teeth since way before the hospital. I removed her teeth and went to the sink to wash them, a surreal experience to be sure holding someone else's teeth in your hands and cleaning them. The nurse returned and I asked what the spongy dipper was for, she said that it was for giving sick people a drink of water. I got chills, the sponge not having ever been used had sat there for days while she was unconscious my mother had not had a drink of water in some 5 days! My alert level went up, my mom was always sipping water having struggled with a dry mouth for years and here she was unable to quench a burning thirst. Even though she was asleep I thought I would at least wet her lips. I put the dipper to her lips and rubbed the icy water over them, they were cracked and dry, parched. I parted her lips and tried to put the dipper closer to her tongue and more in her mouth, nothing. We wiped it up because it ran down her chin. I repeated the same motions and this time I could feel her sucking on the sponge! My sister and I thought it was so weird that she was sucking the water down and yet she was still asleep. She continued to suck the water and began moving around and then she opened her eyes and looked straight into mine. Oh how wonderful to see her warm brown eyes looking back at me. She noises like ohh and ahh, the water must have felt so wonderful to her and then she spoke, "The roles are reversed." She smiled and we all laughed, she drank some more and then fell back asleep.Those were the last words my mother said to me, she died two days later.
My heart aches to see her. My heart is empty because she is not here to pour love into it. My soul knows she will be with me when I go to be with Jesus, she is there with him drinking his eternal life giving water. I miss her...
Friday, April 15, 2011
I sat in the Doctor's office, I forgot my book and looked through the magazines for something to occupy my time. Golf Digest, Retirement magazine from AARP, nothing to read. I sat down and began to rub my inflamed wrists that ache. The door opened and in walks the next patient in line. The woman, once very beautiful somewhere around 50 years old hobbled in with her cane and big glasses, she signed in and sat sat with a whoosh. She too rubbed her hands to try and alleviate her discomfort. I couldn't help but begin to wonder if the women in front of me was my future, a cane to keep steady on inflamed or possibly disfigured joints. She looked like once she had been graceful and full of life and now she was hurting and on her face you could see all that the pain had done to her. They call my name and I try to pop up to fast, ouch. The women said slow and steady wins the race, I laughed and continued to walk slowly towards the nurses voice.
I had decided that today I would talk to the Doctor about my pain level.Lately I have thought about going on disability because I do not have the stamina and physical health needed to do my job. My pain is so high that it is affecting my work, this disease has showed no signs of slowing down. It is funny, I was raised never to ask for help or admit that you can't handle something, I actually have to make a conscious decision that I am going to ask for help, to be completely honest with the Doctor. The doctor came in, she reviewed my latest labs and we talked about my symptoms, I was honest with her. She responded better than I thought she would, she prescribed several different medications, some to alleviate pain immediately and some to slow down the progression of RA. I told her about the lady in the waiting room and how I was scared that in 10 years that could be me. She told me that many of the patients she has now did not have access to the treatments being used now to treat the disease, the disease was allowed to run ramped in their joints, causing crippling damage. She told me that if I was willing to fight, then she would supply the arsenal to fight RA.
Thursday, April 7, 2011
My husband and I have been across the country several times. When we were younger our favorite thing was to drive across the country and see different areas. We enjoyed the different landscapes, weather and people. When we did those trips our most trusted tool was our map. Before we set off on an adventure we would plot our course on the map, settling on a route based on time restraints and over all beauty of the trip. On one particular trip we decided rather than drive through southern California which is both hazy, full of traffic and very ugly we would cut up through other states not previously visited and bypass Los Angelas. On the map this looked like a safe and reasonable route into the Bay Area. The ride was breath taking until....The road changed and suddenly we could see that the terrain was different, we started our decent into the unknown.
But small is the gate and narrow the road that leads to life, and only a few find it. matthew 7:14
When we got the bottom or our decent we saw the most amazing, most terrifying sights. We had landed in one of the most unlikely of places, the desert. We passed signs that read that we could be in danger from the heat, that our car might overheat and we would be stranded because there is no one living there. We saw nothing living there, no people, no bugs, no birds just sand. We even passed the infamous Area 51.Our perfect route was not looking so perfect anymore, it looked like it was full of peril. You see when you lay out a route or a plan it may look good on paper but you have to take in to account the unknown. The desert was the unknown, it wasn't on the map. On the map it looked like a road that would take us where we wanted to go. We kept our eyes on the road and drove carefully through the desert, windows down and temperatures above one hundred. The car made hot wind against our faces.
When we reached the end we could see the mountains looming ahead of us and we sighed a relief.We then began our assent out of the desert which would prove to me more treacherous. Death Valley California is below sea level.The road cut back and forth, no guardrail on our side of the road, sharp cliffs, narrow road. I have never seen my husband get nervous driving. He has driven in all kinds of conditions but this road was making him nervous. We thought we must be starting the assent up the mountain but the mountains looked to far away for that. When we finished the trip upward we finally reached sea level with the Sierra Nevada mountains looming in front of us.
With everything that has happened in the last year I am remembering this trip. We had plans, had bought a home, moved our family, we had our map guiding us where we thought we needed to be. Our best laid plans don't always end up the way we planned them. We followed the map and the road and yet the conditions along it were full of peril.
‘I always see the Lord in front of me. I cannot be moved because he is by my side. That is why my heart is glad and my tongue rejoices. My body also rests securely because you do not abandon my soul to the grave or allow your holy one to decay. You make the path of life known to me. In your presence there is complete joy.’
Even on the road God is with us. He does not ever let us tremble in fear or abandon us on our own. He gives us a strength that can not be broken, a joy that can not be explained, a hope for all eternity. A lot of people would rebuke this saying, "Why do we have to go through all this discomfort and pain? Why would God do that?" My thoughts are that God does not like us in pain but he does want us in a constant state of metamorphosis, he is always asking us to grow and to change, to become better than we are. I am thinking about childbirth, it is painful, uncomfortable and sometime unpleasant but the end result is you change from women to mother, from fetus to child. Is it not worth the pain involved?
Tuesday, March 29, 2011
This summer my daughter Echo will embark on a mission trip to India. This is no ordinary trip, not a summer camp or retreat, it is to fulfill a desire that God has put in her heart.
Take delight in the LORD,
and he will give you the desires of your heart.
You see many years ago a seed was planted in her. In 2002 our family went on a mission trip to the Dominican Republic, it was one of the hardest points in our families history, it was scary, foreign, isolating and faith impacting. Out of that trip came some pretty big spiritual revelations. The first was my husband was called into full time ministry and began to pursue a pastoral job and the second was that Echo knew she wanted to be a missionary. That tiny seed, just the desire to evangelize somewhere (at age 12) was big enough but then God started speaking to Echo and giving her more and more love and compassion for the people in the Middle East and India. Every time something is said about that region or it's people Echo's ears prick up and she listens. When things erupt and there is turmoil, Echo feels it with them. He heart breaks when a bomb explodes, or when hatred is spoken about these people so far away from us. Many well meaning and good Christians have tried to persuade her not to go into this region of the world, saying well meaning and very logical things about safety, security and her youth. This hurts Echo, she begins to wonder if maybe she is wrong and everyone else is right. She told me the other day, "how can it be right for people to die in the middle east, at war or in turmoil and not know who Jesus is?" As a mother it is so hard to minister to her, to comfort her and enable her to see the truth what ever it is. Part of me would like nothing better than to keep her here with me, safe and sound. I know that would be wrong. Who am I to judge her passion, her faith, her calling. Part of being a parent is learning to let go, to have our children find their place in the world. I know that this one trip to India will change Echo, it will give her direction and it might end up taking her even farther away from home. Scary to think about but I would rather have my daughter half way around the world standing with Jesus then lost and wondering around the cities of the United States alone. In the bible there are several things Jesus, God's own son commanded of us.
The first is love God above all else.
The second is to love your neighbor (everyone in the world) as your self.
29Jesus answered, “The most important is, ‘Listen, Israel, the Lord our God is the only Lord. So love the Lord your God with all your heart, with all your soul, with all your mind, and with all your strength.’ The second most important commandment is this: ‘Love your neighbor as you love yourself.’ No other commandment is greater than these.”
The last was to go out into the world and make disciples of other nations.
Matthew 28:18 18When Jesus came near, he spoke to them. He said, “All authority in heaven and on earth has been given to me. 19. So wherever you go, make disciples of all nations: Baptize them in the name of the Father, and of the Son, and of the Holy Spirit. 20Teach them to do everything I have commanded you.
“And remember that I am always with you until the end of time.”
Tuesday, March 22, 2011
I love Spring, it is the promise of renewing that comes each year. After a long hard winter the first signs of spring always brings to mind a new year, a new beginning. I have a ritual of sorts that I do each year. No matter where I am living, a house, a condo, an apartment or a tent I always plant something somewhere. I do not have a green thumb but I fumble through it. I buy seeds and play in the dirt and plant them, water them, and watch as a new creation is born. I know lots of people who every year go to the home stores and buy already grown plants and deposit them in their dirt but somehow that doesn't appeal to me. I enjoy taking something so plain (the seed) and lovingly care for it as it grows into something. Maybe it is the Mama in me that enjoys the creation part, maybe it is the God in me that enjoys watching as the creation unfolds. This year I bought wildflower seeds, poppies, and a few others. For some reason I am drawn to the wildflowers every year, I think because the seeds are all mixed together and you just don't know which flowers will grow in your area and because I have daughters who when they were young would cut bouquets for every one, I had to grow things that were very abundant! The poppies are for sentimental value, they remind me of California which is where I am from. There something that is therapeutic about my spring ritual, it somehow resets my thinking for the new year. In reality I am the seed, every year I am reborn.
2 Corinthians 5:17-18
17Anyone who belongs to Christ is a new person. The past is forgotten, and everything is new. 18God has done it all! He sent Christ to make peace between himself and us, and he has given us the work of making peace between himself and others.
Thursday, March 17, 2011
O.K. so I did my taxes, like so many other Americans I rely on my income tax refund. I am lucky, I am poor and have 4 kids so I have a little nest egg that comes to me each year. Thank you Uncle Sam you always allow me to buy my kids new shoes and replace the clothes they have out grown since the beginning of the school year. I noticed this year that there is a section for deducting medical expenses so I began a file and started saving receipts, I fill a prescription and put the receipt in the file. So far this year alone I have spent $781 dollars out of my bank account for medical problems, prescriptions, and doctor visits. Oh yeah, I have insurance which is deducted from my husbands public school teacher salary every month. I do not know the exact amount but I am betting it is a lot for a family of 6! I have an outstanding bill from my Rheumatologist for close to $300 all I can figure is I paid my co-pay, the insurance paid their portion and what remains is what I need to pay in order to continue my care. Really the doctor has already received over $100 dollars for a 10 minute visit how much does she really need? Give me a break. All I want is to be healthy, normal, untouched by RA is that too much to ask. I am beginning to think that maybe being ill is too expensive for two teachers with a family. Uncle Sam saved me for the first few months of the year but after the tax money is gone I am out of luck and sick of being broke and sick of RA. It is funny that in the middle of all of this God is speaking to me, reminding me of what is most important and relevant to the whole picture. No matter how hard things may seem in the moment, I am praising God for all he is doing in my heart. I will fix my eyes thoughts on what is true.
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
8 And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 9 Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.
Updating now mid April add another $800 in medical expenses!
Wednesday, March 16, 2011
According to my family and those who know me I am superwoman. I have always been able to keep going, to get things done even when everyone around me was withering from exhaustion. I am trying to get my family to realize and understand that I am not that person anymore, that my body is now being ravaged by a disease that slowly takes away my physical strength, mind and spirit. The disease is Rheumatoid Arthritis. For years I have struggled with undiagnosed pain and fatigue and now it has a name. I am fighting it with all I can, my strength, my spirit, my heart and my mind. The pain sometime is so unbearable, my body just wants to rest in a hot tub and try to unwind itself. But I don't do that, I keep going, keep working, keep trying to have a assemblance of normalcy. I am not the type or person to ask for help, to complain or to make my needs known. Is that bad? I expect my family to help me, to understand. How can they when they don't know what this feels like. When it hurts to walk because you have bulging discs in your lower back, your hips are inflamed and of coarse your knees and feet hurt because your RA will not settle down. Oh yeah and I am suppose to walk 3 miles to work each day and teach 3 year old's. Yes, I am complaining. I know I shouldn't but lately I feel like no one is listening.
The dictionary describes pain as:
painAn unpleasant sensation that can range from mild, localized discomfort to agony. Pain has both physical and emotional components. The physical part of pain results from nerve stimulation. Pain may be contained to a discrete area, as in an injury, or it can be more diffuse, as in disorders like fibromyalgia. Pain is mediated by specific nerve fibers that carry the pain impulses to the brain where their conscious appreciation may be modified by many factors.
Pain is also a term specifically used to denote a painful uterine contraction occurring in childbirth.
The word "pain" comes from the Latin "poena" meaning a fine, a penalty.
/peɪn/ Show S