Thursday, October 13, 2011

Are you listening?

I am simply at the end of my rope, dangling by a thread and unsure of what I will fall into. I am in so much pain, my doctor won't help, my husband doesn't get it, my kids well... are kids. I don't know what to do. I contacted a lawyer who told me that in order to get disability I need to quit my job. I can't quit my job because it would hurt my family. I can't keep working because I am in so much pain and nothing is working!! I have had a kenalog shot, a round of prednisone and I am taking the last of the pain medication I had on hand that was prescribed for my back. The doctor will not give me any pain management and I am self medicating at night with OTC sleeping pills, ibuprofen 800 mg, and the pain pill just to sleep. I keep praying for something to happen and yet it doesn't change, please please pray for me. I hate to ask others to intercede for me but I don't know what else to do.

Monday, October 3, 2011

birth


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

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, July 17, 2011

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.

Wednesday, May 25, 2011

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!

Tuesday, May 10, 2011

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.

Saturday, May 7, 2011

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...

Friday, April 15, 2011

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.

Thursday, April 7, 2011

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?

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.
Mark 12:29-31
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

Reborn


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

At what cost?


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.

Philippians 4:6

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

The Isolation of Rheumatoid Arthritis Pain

I am not superwoman


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:

pain

An 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.



Contrary to popular belief my RA pain does not go away with Ibuprofen, Methotrexate injections or muscle relaxants. It does not ever go away it simply migrates to another joint and continues on it's coarse.