Superhero

So for awhile now I have been having some pretty bad symptoms. I had very heavy fatigue, the kind where you are dragging your legs around and feel like you weigh 1000 lbs. The kind that never goes away no matter how many naps you take, how early you go to bed or what kind of activity you are involved in. The doctor has been told, she doesn't understand and asks my if I am taking my vitamins and folic acid. I am screaming, "DUH!! That is why I am asking you!!" When I went for my yearly physical and blood work with my family physician my blood came back with high cholesterol, this was no surprise as I have had it before and my family history is full of it. Doctor said to take fish oil supplements, ewww never met a fish oil supplement that I could stomach they all come back as fish burps. I started thinking about the family history, high blood pressure, Rheumatoid Arthritis, type 2 diabetes, heart attacks, plaque in the arteries, cancer, asthma, arthritis, high blood pressure and heart disease. Wow did I sound like a ticking time bomb, tick, tick, tick. I started think what can I do to change my cholesterol which would in turn lower my likelihood of getting some of the other stuff. I knew meat would have to go, I had been a vegetarian before and knew that it had made a major effect on the cholesterol. I began to think some more and decided to read a book that I had seen on the morning talk shows, the book was the kind life by Alicia Silverstone. I know what you are thinking the girl from Clueless, come on Tina! Yeah well she is a great writer and encouraged me to take some bold steps in my life, I became a vegan! At first my decision was purely to affect my cholesterol and risk of heart disease but I found some added icing on the cake. My energy level is back to normal, if not better than normal I feel like a human again. I have steady energy that lasts all day and at night guess what I do? Sleep! Like a baby. All the stress I felt before about my day, my family, my work, school, it is now gone. Alicia tells us in the book that animals are under a tremendous amount of stress before they are slaughtered and all that stress hormone is secreted into the meat we eat. When I sit down and eat a meal my food comforts me, it heals me, nourishes me and gives me a sense of peace because it is living food for a living body. I know it sounds so hippy but it is true. I am not going to make anyone feel bad for the food choices on their plate, it is not my job and everyone has to make choices for themselves but I am giving you a challenge. Go meat and dairy free for just two weeks and see what a difference it can make in your body! 

Sunday morning

It is Sunday morning and I have to go pick up 4 prescriptions at two different pharmacies. I find it hard to come to terms with the money being spent at these two pharmacies when i have found little or no relief from the pain of Rheumatoid Arthritis. This is hard because our family finances are incredibly strained at the moment and I am worried about just having enough money to feed my children. I decide that it is better to pay with cash for the drugs and write a bad check for the food, something I wish I didn't have to do right now but with a husband not working and me making a lousy $800 a month it is a necessity. I take a deep breath and try to relax my shoulders which are causing me a lot of discomfort lately. Do you know you use your shoulders every time you move your head or your arms, yes painfully I know this is true.
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.

How did she get so brilliant?

I was talking to my daughter about life, how I really felt like a failure because I don't have energy to do anything. (stupid Rheumatoid Arthritis) My oh so wise daughter reminded me that pain in our bodies, the aches, the fatigue is so temporary. That in reality it is our spirit and heart that are well and doing what God wants us to do in the this season. That we need to keep our mind on the spirit and heart and move away from thinking about our temporary bodies. How did she get so brilliant?? It sparked in me, like a light bulb, like the switch was turn on. Why had I never thought about it that way! Here I was defeated, thinking I was a failure because I can't do what I use to do, can't do what I want to do. I was letting the enemy win! I might not have the energy and strength to run a marathon but I can keep my mind on the things that are eternal, that have real meaning, and in this way the enemy has no place in my life.

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!

The heavyness of being me

Why do I feel like I am carrying the weight of the world on my shoulders? Frustration, overwhelmed, under prepared, I feel all those things at once. Have you ever thought so many different thoughts at once that you could not sort them out? You look at your calender, your schedule, your life and think that there is no way you could possibly take care of everything you HAVE to do. I try to chip away at the list of responsibilities and it still grows bigger. I ask for help and get procrastination and that in turn makes my list longer and more complicated. Today I began to think that I should just give up, throw in the towel, quit, walk out, run away. Instead I just wrote to you.

I could list for you all the things I have going on right now plus dealing with a life long disease but I won't, complaining is something for children and not for us moms. Let's just say there are too many pots on the stove for me to deal with, everything is boiling over and burning.

Remembering mother's day

For the past four years there is an eternal battle that goes on especially around this time of year. Mother's Day is forever changed in my life, gone are the days of cards, flowers, and sweet phone calls. The last Mother's Day I spent with my Mother was in 2008. I traveled to California alone to meet up with my sister and see my Mother on her death bed in the hospital. When I arrived at the hospital she was awake, her eyes lit up but she was unable to talk. She struggled with pain, if you touched her she would scream out in pain, when the nurses would change her position or have to clean her up she could be heard from way down the hall. That first day I know she knew I had come for her. When the doctors came that day they told my father that she was in so much pain and that there was nothing they could do to help her recover, no surgeries, treatment or medical expertise. I don't think my father really understood what was being said to him, I think the shock and his partial deafness spared him from what the doctor was saying. The doctor continued with discussing my mother's living will that stated that she did not want to be in pain and that she did not want extreme live saving measures taken. The doctor wanted permission to take my mother off the pain pump with morphine and to put her on a morphine drip. My father agreed and we left her in her room resting comfortably. My sister and I left with my father and headed back to his apartment, we had come for mom but we had also come to help my dad deal with the situation. He is a quiet man, a proud man and often shuts down instead of facing situations head on. I wished he knew the Lord so he could feel comforted by him but he doesn't care about Jesus or God. My sister and I felt pulled back to the hospital but we would have to wait until the following day to see my mother again. That night we made a list of people that we must call to inform them of my mother's situation, Daddy would deal with the insurance company, burial & cremation insurance people. My sister would call my mother's brothers and sisters to inform them. I would call my mother's spiritual friends, the people who were closest to my mother over the 68 years she had been on this earth. I dreaded making those calls, calling pastor Bill who was my pastor when I was 5-11 years old! Pastor Bill was so sweet and recalled many fond memories of my mother singing in the choir, playing the piano and being a women of God. Pastor Bill loved my mother and his words were bittersweet in my heart, I had forgotten so much of who she was already and she wasn't even dead yet! I called Maryanne who was my mother's best friend for some 35 years. My mother had once called her the most spiritual person she had ever known, even though she was catholic! I always thought that was funny to include the catholic thing. Maryanne is now a Psychiatrist and published author, she said that it was my mother's own mental illness that got her interested and later on consumed with becoming a psychiatrist. Funny how my mother's mental illness which is seen as something so horrible and agonizing in my family, how God used that to inspire Maryanne. Maryanne spoke of how faithful, honest, pure and good my mother was. She also believed in the in-between life that when people are in between living and dying how the angels come to minster to you and Jesus comes in the end, how I should tell my mother that it was ok to go with them. I honestly thought at the time that the only thing I want to do right now is get off this phone because this women in completely out of line but I didn't I listen and politely exited the phone call. With calls completed my sister and I tried to go sleep at our hotel, it wasn't much of a sleep and when we were a asleep it was filled with vivid, wild, scary dreams. The next day we returned to the hospital to find that our mother was unconscious due to the morphine. I don't think any of us realized that she would no longer be awake but rather be resting as comfortably as she could. It is strange when you can no longer speak to someone, when there is so much left to be said and no way to say it. Now with cancer, liver and kidney's failing, and congestive heart failure she would lay in the bed and just sleep until the end. We all took turns sitting with her and talking to her, not knowing if she could hear us or not. When I took my turn I said with her and talked to her about my girls and my life in Washington. I could barely get out the words about how much I loved her and missed her. Then something in my clicked on and I prayed for her, outloud and held her hand. I also told her that both me and Alicia were here with Daddy, that we were going to take care of him, that he would be ok. I told her that when Jesus comes for her that it was ok to leave with him. We would all be ok and she could go be with Jesus. She squeezed my hand and opened her eyes, her eyes were searching and trying to tell me something although she could not talk. I told her it was ok, I would take care of Daddy and the boys and she could go with Jesus when he came. Her eyes softened and teared, I told her I loved her and then she fell back asleep.
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...

Going for a visit to see my Doctor

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.

Eye on the road

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.

Acts 2:25-28

‘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?