"Super Mom" or "Super Rachel" was how I viewed myself as well as many other friends and people in my circle of life. I always had it together. I played the role of overachieving mom, wife, daycare and preschool owner, PTA volunteer and teacher helper, Softball and Basketball Mom (never missed a game), made sure my kids tried every sport and activity available, threw over the top birthday parties for my kids, volunteered at church and was a Women's Ministry leader and event planner, attended Bible Studies faithfully, JBQ (Junior Bible Quiz) Coach for all 3 of my kids for 6 years, planned monthly "friend" get-togethers, traveled with my kids and did family activities, professional shopper (this one was at the top of the list), avid baker, hiked in the mountains, rode my bike everywhere, walked about 2-3 miles a day and later in life started a business, Gluten Free Mama and wrote two cookbooks. Not only did I perform all of these tasks, some would say I went "OVERBOARD" with most of them, and not even skipping a beat. Hence, how I got my nickname, Super Rachel or Super Mom. Somehow, I was able to perform all of those tasks and still be 100% mom and keep my house somewhat clean, orderly and have dinner on the table every night.
Those days have are long gone and now a thing of the past. Thanks to Trigeminal Neuralgia and MS, I am lucky to just make it through a day. MS has made me so fatigued that getting out of bed and showering takes up most of my strength for the day. Fatigue is so different than being tired. When you are tired you still can do things. When you are fatigued, you have not strength for simple things, you feel like your body has a huge 2 ton weight attached to you and you have to push through the fatigue with every amount of energy you have just to do simple tasks. Then you suffer the consequences of those simple tasks and have to sleep for 2-3 hours to recover. Half of my body has numbness making it difficult to walk. My right leg has become so week that it drags, slides or sometimes I cannot even get my mind to make it move. It has gotten to the point to do any activities outside my home, I really need to be in a wheelchair. My bedroom is on the second floor. Sometimes I will look up to the top of the stairs and think that it is impossible to make it to the top. My compassionate kids and husband will see my angst and discouragement in my eyes as I look to the top of the stairs that they will come behind me and help me walk to the top of the stairs without being asked. I dream of the day I can have a master bedroom on the main floor and a bathroom next to it. When I go places with the kids like shopping or to the grocery store, I will be doing totally fine. I can walk through about one store or to the back of one store. Then my leg will start dragging and my strength will deteriorate and from that point I either need to hold onto my kids' or husbands arm or sit in a wheelchair. It is silly and discouraging. I would love to just spend the day shopping with my girls and be able to walk the entire time or not have my neuralgia triggered.
The Trigeminal Neuralgia is far worse than the MS and it has virtually robbed me of my life as I knew it. The pain is so extreme that sometimes I just would rather die. Don't confuse that with being suicidal, suicidal I am not. The extreme pain extends from behind my ear and branches off into the three nerves that are in the face, the forehead, through the middle of the face towards my nose, and the lower nerve that reaches across my jaw and into my teeth. Often it will start with electric shocks that vibrate through the nerves and then after that subsides it is just pain. My type of Neuralgia rarely gives me breaks in the pain or triggers. Some people will have months of breaks between attacks, I do not. The swelling, agitation of the nerve and pain around the ear makes it very difficult for me to sit up straight for more than an hour or so, so I have to sit in a reclined position to avoid severe pain. This has caused me to only to be able to work from home and from bed or the couch. I don't eat much because it hurts to chew and usually sets off the pain. I have to choose soft foods or liquid foods that don't require pressure when chewing. I cannot bend over to pick things up or to get things off of a lower shelf. If I do, I can black out, trigger the nerve, and I have a strange reaction where I lose control of the right side of my body. It might be a combination of the MS and the Neuralgia, but I won't be able to communicate, yet I can hear, and my face will droop and my eye won't open. Sometimes when my nerve is going off, I will drool. Embarrassing huh! Noise triggers the nerve too. Noise is so incredibly painful for me that it has caused me to not be able to go to church, decreases how long I stay at the kids games or music events, and I avoid practically anything that will be loud. I often will wear earplugs as well as ear muffs just to get by in certain "normal" daily activities. I have to travel for work and the pressure from the air in the plane and the altitude changes is so painful that I hold my husbands hands until they hurt him and cry into his sweatshirt so no one will hear me. Most days the pain is so extreme that I just have to have pressure on my ear and lay down and sleep. Sometimes when we go out, the nerve will start hurting and the pain will be so bad I can't hold my head up. I choose not to drive unless it is within 5 minutes from home, because I don't ever want to get caught in a situation where I can't make it home.
The days of being "Super Rachel" or "Super Mom" are long gone.
I can't clean anymore. Mopping and vacuuming are big no no's. I can't scrub the tub. I can clean the toilet and the sinks, but can't sweep up the floor. I can do laundry, but shouldn't because bending over and putting things in and out of the machine is not good for me and walking up and downstairs to the basement is tough, let alone carrying a load of laundry. Folding the clothes literally makes me exhausted. I can't stand up long enough to do the dishes. I either get dizzy, have no strength. I can't do the grocery shopping anymore, it completely wears me out and that is if I can't make it through the entire store without an attack. I can't stand laying on the couch or in bed and seeing and thinking of all the projects around the house that I can't do because physically I can't do them.
I deeply depressed that I cannot cook or bake anymore, which happens to be my passion. If I have any energy, I put it into work or spending time with my kids so creating new recipes are rare and few between. By the end of the day, I either have no strength to make dinner or my neuralgia is so bad that I can't stand up and work through the pain. I force myself to make dinner at least once a week. Family dinners are very important to me.
I am no longer involved in school activities, no longer a JBQ coach, no longer involved in Women's Ministries at church nor attend Bible study and rarely make it through an entire service at Sunday Morning church. I was the glue that kept our group of friends connected, now I rarely see them and often wonder if they resent me for not being available anymore. I no longer can throw tea parties, over the top birthday parties for my kids, or even just invite couples over to play card games.
I am sad that I can't go to all my kids events, be their coach, be the obnoxious mom that is always cheering my kids on at the games, go hiking with my family, or have spontaneous family trips here and there. I feel guilty that I can't clean my house and do household projects and make dinner or have home-baked snacks when the kids get home from school. I am brokenhearted that my involvement in church is little to none anymore. I miss my friends like crazy. I am sad that my kids have to push their mom in a wheelchair when we go places. I am brokenhearted that my kids have to explain to their friends why I don't look normal anymore or have the wrong words come out when I speak or have to walk with a cane or sit in a wheelchair. I am not "Super Rachel or Super Mom" anymore. I MISS ME!!
On the Bright Side...
My husband likes to cook so he makes sure we have dinner on the table most nights. I am so thankful for him. I have taught my girls simple meals like Dutch Babies, Egg Sandwiches, and Spaghetti so sometimes they pitch in and help. Sometimes, I will prepare the meal at lunch time and just throw it in the oven at dinnertime.
I insist that no matter what I remain a GOOD MOTHER. I insist that my kids stay very active in their activities, and I insist they get good grades in school. I make that a priority. They should not have to change their life because of my illness. I embrace the moments that I can go to their games, plays, vocal lessons and piano lessons. I am thankful for the little moments. Helping them put together their "Who am I books at school." Ordering corsages or boutineers for their prom dates. Hanging out around a puzzle and hearing them talk about their day. Helping them with their homework. Watching our shows on TV. American Idol, America's Next Top Model and Psych are family favorites. Snuggling up with my baby(now 8) and playing on the computer or watching tv. Helping them reach their goals like going to DC for the 8th grade trip, inspiring them to stay involved in sports, teaching my step son about shivelry, listening to the kids talk about their day, open up about their struggles with their teachers or kids at school, or watching the kids be goofy and being goofy with them. Although, I can't make it to everything I force myself to be available all the time, either through texting, picture texts, phone calls, and being available at home. I have several trade shows that I am doing this year for my business. I am taking one or two of my children with me to each one to have one on one time with them, an opportunity to just bond individually. My physical body may be broken but my relationship with my children is NOT.
I am thankful for my husband, Rob, who makes sure we have dinner each night, plays taxi driver for the kids and their events, takes on the big role of keeping the household from falling apart, keeps my business afloat, loves me whether I am feeling good or feeling miserable, loves my kids as if they were his own and spends quality time with all the kids. I am thankful that he enjoys spending time with me, even if all I can do is sit on a bar stool next to him while he is making dinner or be in the same room with him while he works and just support him.
Grocery shopping completely wears me out. So Gracie my nearly 16 year old daughter now does all the shopping. That has made a big difference. I feel bad that she has to take on this responsibility, but it is a good life skill to learn before she leaves home. I have turned it into a teaching and bonding experience. I have been teaching her to look for sales and compare prices. We will text back and forth and I help her make decisions. She feels like she is helping and has a since of freedom and trust from me and is learning to be independent. Gracie is also my personal driver. She takes me anywhere I need to go. She takes me shopping a lot. She loves to shop and so do I and so do Cassie and Lexie.
I am thankful for my support system. My friends are always there to support me and encourage me. The Carlyle In-laws have always been a beacon of support. They never miss one of my kids events and would drop everything to help me if I needed it. My new Edington In-laws have been extremely supportive and have really dove into being involved with all our our kids. Today Grandpa Dave took my girls to the Lady Griz championship game and grandma Rita put on a romantic dinner for Josiah and his friends for their prom dates.
Thankfully, God has blessed me with an amazing team at work that fills in all the holes and keeps my business thriving. That includes my accountant, designer, local businesses, MCDC, MMEC, G-free Foodie and all my gluten free friends that encourage me and support me.
I didn't choose to be sick. I didn't choose to not be able to walk normal or not at all. I miss the old Rachel more than you will ever know. I want so badly just to be normal. But this is my life now. I do CHOOSE to be a good mom, I do choose to be a good wife and I choose to not give up on life. I choose to have Joy.
With all that said, it doesn't mean that everyday is not a struggle. I have to fight through all of these things everyday. It is a daily choice.
Saturday, March 16, 2013
Friday, February 15, 2013
For His anger endures but a moment; in His favor is life; weeping may endure for a night, but JOY comes in the morning.
It was pointed out to me the other day that I haven't posted on my blog since August 2012! I can't believe it..well yes I can, I have been living with Chronic Pain and trying to just survive the day. You know what I mean? I have been keeping my FB page up to date with comments so if you are missing the posts, just hop on over to my facebook page. Click here.
I am a part of a network of friends that have Trigeminal Neuralgia like I do. We often share how we are feeling and comment back and forth with encouragement or with information about what we have experienced. It basically is a network of friends who understand exactly what you are going through that you can lean on day to day. Today I was having a conversation with a few gals and one of the gals mentioned that she lost her husband a few months ago. I lost my husband to Leukemia when I was 25 years old. I remember what a hard, difficult and lonely time that was. I tried to encourage her by telling her one of my favorite sayings. Joy comes in the Morning. She asked me if I really believe it. I have never been asked that before, although without hesitation I said ABSOLUTELY I DO! I shared with her where I got the saying and it happens to be one of my favorite Bible verses that has helped me and that I have clung to since I was a child. Even if you aren't religious I believe you can find comfort and hope in these words. "For His anger endures but a moment; in His favor is life; weeping may endure for a night, but JOY comes in the morning." Psalm 30:5.
I was able to share this saying and truth with such confidence because I have lived it and experienced it countless times. I have Trigeminal Neuralgia, also known as the suicide disease as well as possible MS, still undecided. "Pain" is a faithful companion. I also, unfortunately, have not been a stranger to other life traumas, including but not limited to, being shipped off to boarding school (another name for reform school), a miscarriage (traumatic to me), death of a husband, still-born child, and a very difficult marriage ending in divorce, and other small stuff in between. Through all of that, I have never lost site of how BIG my God is and how His words are ALWAYS true.
There have been so many times throughout all these trials in my life as well through the peaceful times that I have experienced "JOY in the morning". Even in Bible times, there were trials as tough as chronic pain, loss of loved ones, divorce, childbirth issues, family issues, wars, sickness and so much more. That is why God gave us these words to encourage us. God knows that we live in an imperfect world and He never promised us an easy life. However, He did promise to give us hope and to give us Joy. In the scriptures the word Joy is mentioned 165 times. That has got to say something right there!
I want to share a few of the ways that I have been blessed by JOY in the morning.
When I was sixteen, I was swooped up, parent-napped and taken to an all girls school in Louisiana. Being taken away was traumatic in itself, but the girls school had "issues" that even all the parents didn't know about until it was too late and the school closed down 7 months later. The first few weeks that I was there were so traumatic for me that I prayed every minute that God would give me the strength to be there or to get me out of there. Three weeks later, I was asked to help in the kitchen. It was one of the special privileges the girls got for being good. There were 205 students to cook for, so it was not just family style cooking, more like restaurant style. The girls who worked in the kitchen had little to no supervision/control, were allowed to do their studies in the kitchen between meals and had privileges that made living there easier to cope with. The house mom noticed that I had a special talent and enthusiasm that changed in my spirit when I was in the kitchen cooking. It caused her to allow me to be put on full-time kitchen staff for the rest of my time there. Not only was this my saving grace, it allowed me to gain culinary skills that I am now using as a two-time Cookbook Author and in my business, Gluten Free Mama. A great example of "His Favor".
When I was 19, I was in a very bad place emotionally, and spent a lot of time partying. I had given up trust that God loved me and that He had a plan for me. I washed away my sorrows drinking and partying. Then one day while working, this dashing young man wearing a tank-top that had huge biceps and a smile that literally knocked me off my feet walked through the bank doors. He came to my teller station. I could barely get a word out, because I was still on the floor, Ha ha. I felt God speak to me and say: This is the man that you are going to marry. I brushed it off as if it were just a silly notion. Six weeks later, this amazing man asked me out on a date, not only was he gorgeous on the outside, he was beautiful on the inside. He showed me that I didn't need to drink to be loved or to hide from the pain of the world. He helped me renew my relationship with God. He helped me find joy in the simple ways of life. He showed me that I am lovable and he loved me every day of his life. Although, our marriage was short, the positive impact that it had on me has lasted a lifetime. "Joy that lasts."
|Chris and I shortly after we met.|
God was so amazing to bless me with a beautiful daughter shortly after getting married. I was only 22, but did not think I was young at all and embraced motherhood. Gracie was my little doll. I changed her clothes sometimes three times a day just so I could see her in every cute outfit. Life couldn't have been better. My husband and I worked at a Youth Home for troubled teenagers, not much different than I was as a teenager. We felt like we were giving back. We had an amazing marriage, amazing friends, an awesome job, lived in beautiful Montana and had the most beautiful baby in the world....then three months later the biggest shock of our life happened. Chris had been sick with what we thought was pneumonia for a few weeks. After work one day, he was so sick he went straight to the doctors. Three hours later we got the call at the youth home to drop everything and get to the hospital in Missoula as fast as we could. We were so young and innocent of "real life" issues that we had no idea what was happening. Two hours after being poked, prodded, and interrogated in the ER we were taken up to the Oncology floor. Ignorantly, I asked the nurse what Oncology meant. She said the doctor would explain. The doctor came in and said that our life as we knew it was going to change, "Chris has Leukemia and I am surprised he is even alive right now". He then immediately started chemotherapy, and they also had blood life-flighted in from Seattle for transfusions. Our innocence was swept away in a fleet of a moment and the biggest challenge of our life was ahead of us. Chris nearly died later that November after complications from chemo. When he was out of the woods we prayed all the way home from the hospital that God would give us wisdom on what to do next. When we got home there was a message on the phone from Chris' mom that we should go back to Washington and live with them. Chris could go to the Fred Hutch for a Bone Marrow transplant and I could start a daycare in their upstairs. It was an answer to prayer in so many ways. Chris' parents are still to this day, 13 years after his death being supportive and helping me with my kids as well as my illness and supportive of my wonderful husband Rob. Roz, his mother, is one of my best friends. That's a God thing. How many people are that close to their in-laws and how many 13 years after they passed away? That is "Joy in the Morning"!
|Baby Gracie. This picture was taken just before |
Chris was diagnosed with Leukemia.
Then the last one I will share with you this time, is a few years ago I went through a very difficult divorce, details not necessary to discuss as "Divorce" describes it completely if you have ever been through one. After suffering the loss of a husband, and going through a difficult divorce I decided marriage was not for me. I loved once and he died, I loved twice and well...you know, so I vowed that I would never marry again, nor fall in love again, never date again, etc., etc., etc. Just when my family and friends finally believed what I said was true and gave up on me ever falling in love again, I reconnected with an old friend that I have known for 15 years over FB. We just saw each other on another friends post and started communicating. He had gone through a divorce as well and had 3 children too. We started communicating casually for a few months, then before we knew it we were in head over heals love and our friendship grew into a beautiful relationship. However to my friends, it quickly blossomed because I didn't tell them about it, even hint a word until we were serious about each other. Some of them were blown away, some were happy, some were overly cautious. Then there was my mother-in-law Roz that I spoke about above who had the most priceless reaction of all. Let me set the stage. Roz, is a very nice, polite, respectable, honest, kind, proper, quiet, reserved, and kind of "Old School" type of lady. We were in a local pizza restaurant having a family dinner. I showed her a picture of Rob and I together on my iPhone. She was the first person, other than my kids that saw that we had any sort of relationship/friendship. She practically through her arms up and shouted a loud shout of joy that could be heard next door..."OH, I am so HAPPY! I just gave up that you would ever be happy again!" I had never, ever heard Roz scream that loud and with such excitement and in public even! It was priceless! Anyway, long story short, our love blossomed and a year ago we married on Valentine's Day in a short, sweet and simple ceremony with our closest family and friends present. Yesterday we celebrated our First Anniversary. Love was not in MY cards, but it was in GOD'S cards. It was the best thing that could have happened to me and my children at and the perfect time, God's time. "Joy that comes after weeping...."
|This picture was taken |
the first day my friends met Rob.
|Rob and my Wedding day.|
Now for some humor...I was telling my kids this long drawn out story at dinner tonight. Then when I was all done telling the story, they were done with their food, and I hadn't even started, I asked them..."What did you learn from my story?" Josiah says..."When you imitate what others are saying you give them all the same old person voice." Gracie says..."That you tell really long stories that you think are interesting and over enunciate your words." Cassie says..."That you wave your arms a lot when you are talking." ARE YOU KIDDING ME? I went on for an hour and that is what they tell me! So I gave them a little help, keep in mind all but one is a teenager, and the 8 year old is the only one who had the thoughtful response. I said slowly, "What... Comes... In... The... Morning?" Josiah says, "The sun." Really? I give up! Ha ha! But we had a nice laugh and carried on telling silly jokes for the next 15 minutes. However, I wouldn't let them leave the table until they said JOY COMES IN THE MORNING!
|Our Family Now.:)|
So if you are going through a trial, suffering from pain or from loss, whatever you are going through, please don't lose sight of Joy, it WILL come in the morning! Praying that you will find comfort in these words from a few of my life experiences.
Have a wonderful joy filled week.
***I will try to post more often too!
Wednesday, August 15, 2012
After day in and day out of struggling with Chronic Pain and not getting the help I need from doctors, I came up with an interesting idea. A video Blog of what I deal with each day. My hopes and prayer is that it will a. get more people praying. I believe God is our great healer and physician and He says where two or more are gathered in his name He will hear our prayers. Also, I feel sometimes he uses doctors and people to help with the healing process. My prayer is that someone will see this that knows someone who is doctor or neurosurgeon who they can forward my story on to them in hopes that they can help me. I live in a rural area and the doctors I have seen have said there is nothing else they can do but help maintain me through medications and rest. We know that the only cure is one of the trigeminal neuralgia brain surgerys, but without insurance and without knowing someone who specializes in this, our hands are tied. I really want my life back. If you are a doctor or know a doctor that can help please share my story with them. In the meantime, please enjoy learning a little bit about what I deal with on a daily basis.
Thursday, May 24, 2012
Since being down physically, I have spent a lot of time “napping”, and during my nap time I have been watching One Tree Hill. I have become attached to this show and can’t wait to see the next episode. Today I was watching and episode from season 6. Peyton Sawyer is getting ready to have Lucas Scott’s baby. The only problem is she has Placenta Previa, a condition that could cause her to hemorrhage during birth causing her and her baby to die. I know it is just a television show and isn’t real, but something that Peyton did during the show stuck with me and I just can’t shake it. She created a box of memories for her child to be. In the box the pictures, music, videos, art and everything inside told the story of who she was and her relationship with Lucas was. This was a memory box as a gift to her unborn child should she not live to share it with him or her.
I sat here on my bed watching this episode while trying with all my might to begin getting work done. I am so far behind in my job that it isn’t even funny. I have a list of all these wonderful things I need to do to make my business fabulous and or run smoother, not to mention all the regular day to day things I am behind in. If I had even 20% more energy you have any idea what I could do to bring more product and recipes to the gluten free community? I have my work bag next to me, my accounting computer sitting on my bed staring at me in the face, and my laptop. I started thumbing through emails trying to at least start there. All in the meantime, I am thinking about baking and creating recipes as well as all the things I need to do around the house to pick up and clean and get ready for our big move. It sounds overwhelming doesn’t it? It is. The truth is I don’t even know where to start. I have this heaviness in me that weighs me down and I feel like I need the most ultimate strength to break through this barrier and become the real Rachel again. I have lost who I am. This illness is robbing me everyday of the real Rachel.
I think about the legacy that I am shaping for my children. When they think of their mom, are they going to think of the Rachel who did great things and wrote two cookbooks and started a business in my back yard that grew into a national distribution business that is helping others enjoy life again, the mom who spent quality time with them making memories to last a lifetime, the mom who loved the Lord with all her heart and shared it with everyone she knew or are they going to remember the mom who was sick all the time and couldn’t get out of bed and couldn’t find any energy to enjoy the things life offered, the gifts around her, her family, her friends and her community? If I were to make a box of memories for my children, what would I put in there? Would I make it a box of memories that I would want them to remember me by or would it be a box of memories on how I look at myself, a failure because I can’t be the mom I want to be, the wife I want to be, or the business owner I am capable of being because of this unfortunate illness that has taken over my body and my life?
How do I break out of this entrapment? How do I break through the numbness I feel from being dependent on pain meds and anti seizure and brain altering meds just to survive the day? How do I find the real Rachel again? Where do I start? I want my life back. I want to take my life back. I can’t let this illness control me anymore. Yet it does, because nothing I do can make it go away. I am trapped. Is there any humanity left in this world? Is there a doctor who will push through the red tape and not be afraid to help me? Is there a doctor who would overlook the fact that I have no health insurance and just care about me as an individual that is worth saving, who is willing to take a risk to help me? The doctors know what they can do to help me. Brain surgery to deaden or remove the trigeminal nerve would give me my life back. I had Gamma Knife Brain Surgery in 2010 and I had 8 months that were virtually pain free. I started to have my life back, and believe me, I treasured every day that I woke up pain free. Unfortunately, the pain returned, which I understand is not uncommon and a repeat surgery is often needed. My prayer is that a doctor would read my story and want to give me a chance at life again. I deserve life. I have overcome so much tragedy in my life, I have to overcome this too. My kids need me, my new children need me, my new husband needs me, but most important I need me. I need the real Rachel to come back. I have so much to offer this world. I am worth saving!
Regardless if I can get surgery to heal me, I am determined to heal myself. I started a new treatment for myself, called vitamin therapy, following the advice that I am learning through the vitamin cure books. One of the doctors who helped write the Vitamin cure for adolescents lives here in Polson. He is a retired doctor. A friend of mine referred me to him and I introduced myself to him at the Port Polson Players play last weekend. I am so hoping he can help me. He blessed me so much already. He tracked me down and called me at home thinking of ways that I could help myself through vitamins. He said he is going to pray for me and do research to at least hook me up with someone who has experience with my illness.
Second step, is to wean myself off these pain meds. They are making my life a fog and I feel as if I am numb to the world. I am not an addict by any means, but I am dependent, but I have no choice. The pain from Trigeminal Neuralgia is described to be one of the most painful disorders a human can have. So I am going to have to find a way to help the pain without pain meds. They are controlling my life. I sleep about 18 out of 24 hours a day. I am always tired and have no energy.
Third, I need to be in prayer more. I need to BELIEVE and TRUST God that He will heal me. Whether he sends a doctor to heal me, that I find a way that vitamins and exercise can heal me or if God chooses to bless me by healing me with His divine touch. Either way, I need the strength from God to overcome this. I ask that you will join me and intercede on my behalf in prayer. The bible says where two or more are gathered in His name, there He is with us. So please join me in prayer, believing God will heal me one way or another.
Fourth, I need to take one day at a time taking my life back. Who is Rachel? What do I like to do? What are my gifts? What makes me happy? I need to spend quality time with my children and my husband, get back in the kitchen again and bake and create recipes, and stop and smell the roses. Do your relate to anything I am saying? If so join me and take the steps needed to take our life back again. We get one life to live, and we should live it well. I want to pray for you too, so please let me know how I can pray for you, and please pray for me.
Right now after I post this story, I am going to email it to the doctor who did my first Gamma Knife surgery and once again plead with him to repeat the surgery. Then I am going to take some more vitamin c and vitamin D and then choose a recipe to convert for G-Free Foodie. I am going to open my windows and enjoy the fresh spring air. I am going to take the first step in trying to enjoy my life again. The Bible says we need to have Joy ALWAYS! I am choosing JOY today. Will you choose joy today?
Sunday, May 6, 2012
Today has been one of “those” days. Yesterday, I had to spend some time at the hospital because I was weak. I didn’t get my prescription filled in time and I am on a timed pain medication regimen. I woke up kinda crazy…you know where you don’t get time to wake up wake up and there is so much chaos, right from the beginning of the day. We changed all of our plans in an instant to go support our kids in track up in Kalispell. It was the right thing to do, but it still through me for a wrench because I was geared up for cleaning out the house, getting it ready to sell.
We changed our plans and went to the track meet, because we could sense from our kids that it was important that we were there, especially, Josiah, Rob’s son. It is ALWAYS more important to support your kids, but let me tell you this one came with a price. It was freezing cold and windy yesterday. I wrapped up as best as I could, but the cold got in my bones. I ended up only watching Gracie’s event then I was too cold so I gave up and went to the car. Gracie joined me a little later and woke me up from a pretty good sleep. I was also struggling physically, because I didn’t have my meds on board.
While Rob stayed back to watch Josiah’s remaining events, Gracie drove us to the small mall up there. I struggled to walk through the mall and just enjoy my time with my daughter. It makes me so angry that I can’t be normal. Gracie is one tough girl. She has watched me be sick most of her life. The first two years she watched me take care of her dying father. He died when she was just two with Leukemia. About a year later I came down with this stupid illness and she has seen me struggle with it her entire life. Yes, there has been good spurts, where I have done quite well, but for the most part I have been in pain.
As we shopped she held on to me to make sure I wouldn’t fall and was so kind and supportive. I would reach for something and she would react quickly as if I was going to fall. For a moment, it broke my heart to realized that she has trained herself to take care of me. She has always been my biggest fan, never embarrassed by my health issues. She always loves me just the way I am. On the way back to the field she says mom, “I needed that time with you.” I needed it too Gracie. I did too. I am one pretty lucky mom to have a daughter like her. I hope that she doesn't end up in counseling because of me. Ha!
On the way home from Kalispell, the pain was so bad that I couldn’t endure it. I asked Rob to drop me off at the hospital and come back and get me later. I know that it disappoints him when I result to the pain shot. Sometimes, I just can’t suffer through it. I am weak.
Today, I still have no medication, so I am suffering from withdrawals. My strong will makes me get up and do small jobs and then rest for an hour, then do small jobs and rest. I am resting now of course and just wishing so badly that the pain would just go away, wishing I didn’t need pain medication to get through my day. As I sit here and write, I just looked across the room to a sign I have sitting on my desk. It says, “PRAYER, when you can no longer stand, kneel.” Guess I need to spend some time kneeling. Where I am weak, HE IS STRONG.
Wednesday, April 18, 2012
Counting the cost
As I found my life spinning, in what seemed like a runaway freight train headed for a ravine in which the bridge was missing a section in the middle, I had a roller coaster of emotions and thoughts. There were a lot of what if's and why's along with many how is this going to work and what am I going to do now. Will I ever be able to participate in the things I love – my family, hiking, fishing, bow hunting, and just generally enjoying the outdoors. Would I be able to participate in the hobbies I had always enjoyed – tying flies, reloading, wood working, rod building, and all around tinkering. Would I be able to do things with my wife and children or would this condition rob me of that as well. Would this chronic pain limit my ability to connect to anything in the way that I hoped I could? As I found myself slipping into a cycle of isolation and depression both as an emotional response as well as a physical copying mechanism I began to become aware of potentially where this path could take me. I had seen it in others. First a life changing event and then the downward spiral of their life. I often thought to myself that they had lived such a good life and now to see them was discouraging. It's like they had given up all hope. This reflection continued to bounce around in my mind.
Is that who I am going to turn out to be? Is that what I want to be? Is there any way not to become that bitter angry person that did seem to be adjusting well to the traumatic life event that seemed to steal the very essence of who they are from them. I would like to interject at this point that while a person experiencing a traumatic life event may be a Christian, it does not mean that they will not struggle with thoughts, emotions, and actions resulting from the challenge of coping, accepting, and managing a life that is now foreign to them. Yes our faith in Jesus Christ can support and encourage us, but I've seen just as many Christians struggle with depression, bitterness, anger, and a lack of self worth and self image as I have seen in non-Christians. If you are reading this and living with a chronic issue, it is just as important for you to understand these psychological traps and seek support so that you don't fall prey to the devastating impacts these issues can have in your life if they are given soil to root. If you are reading this and know someone that is living with a chronic issue, you must not judge them as being broken or weak. Do not impose on them that if they just had more faith or prayed more that things would be different. They need your support and encouragement.
It is important that all parties involved see the good in this situation not just what is the struggles are. This is a key point in counting the cost. So what is counting the cost? Counting the cost is making a rational judgment on the direction of your life based upon the calculated pros and cons to each direction you are considering. Counting the cost is the weighing of those pros and cons against each other and coming up with a justifiable and rational decision of what the best direction is that you will take. This usually results in full out commitment to that life path with no regrets and no turning back. These decisions are usually life long and can happen in many areas of our life such as relationships, our spirituality, and issues of character.
As I struggled with all of these new and unwelcome thoughts and feelings I began to realize that I was counting the cost. To put it simply – would I be a perscription drug addicted depressed and isolated individual that never got off of the couch, ate potato chips all day, and watched TV 20hours a day, or was I going to fight. Was I going to fight for a quality of life that was acceptable to me. It may not be what I want, but could I make it the best it could be in light of the circumstances that were out of my control. I chose to fight.
As I made that decision, I was not sure what it meant or what it would all entail, I'm not sure that I know now. I just knew that I would not stop fighting until I felt I had a quality of life that was acceptable to me and to those around me. This decision was not just about me, but my life was having an impact on my family and friends. I wanted to make sure that I minimized the negative impact and maximized the positives of those relationships. This topic I'll address more in detail in a future posting.
If you find yourself struggling with where life is taking you, I would encourage you to talk with others with chronic issues and to begin the process of counting the cost. With out a clear direction you will struggle to ever find a foothold in which to propel yourself into a direction that will bring hope and change. A clear direction also gives you boundaries and guidance on critical life decisions. By counting the cost you have then created a marker in the path of life that you can refer back to and use to guide your steps and decisions in all areas of your life. If you feel like you are aimlessly wandering finding yourself confused and anxious in a roller coaster of emotions and thought, count the cost and use that to capture your thoughts and bring them into line with your clearly decided goals. This is the first step taking back control of your own life. You no longer have to live at the mercy of your condition. You can direct and determine the outcome for those things that you do have control over but sometimes feel you do not. I encourage you to be the captain of your ship, don't just float aimlessly with no purpose upon the seas of life. Counting the cost will give you purpose again.
Consider other, sometime even more than yourself,
Tuesday, April 17, 2012
Do you ever find that stress makes your symptoms worse? Are you suffering from stress? Most likely in some shape or form you are. Stress does not choose you by how rich or poor you are, how smart or not so smart you are, how talented or not talented you are or how healthy or sick you are. If you are a living being…you probably suffer stress. See below at how many symptoms you can relate to. I will put mine in italics. (note they are not all suffered just today, but over time)
What is stress? The definition for stress is mental, emotional, or physical strain caused, e.g. by anxiety or overwork. It may cause such symptoms as raised blood pressure or depression. Synonyms for stress are pressures, strain, anxiety, constant worry, nervous tension, tension, trauma and hassle.
Through a quick google search I found out that the top 20 stressors are death of a family member, terminal illness (one’s own or a family member), chronic pain or chronic illness, drug or alcohol abuse, divorce, marriage, loss or change of job, moving, change of school, relationship problems (spouse or parent/child/sibling), persistent relationship problems (with friends, family members etc.), academic problems, Occupational problems, victims of abuse or crime, criminal actions toward others, abusive actions toward self or others, Extreme loneliness/lack of community membership or friendships and severe financial problems.
Then here is Rachel’s top 11 daily stressors: Paperwork, filling out forms, cooking dinner (when I am tired), cleaning house including laundry,taxes, money, dealing with ex-spouses, dealing with family drama, dealing with my health issues, and undone projects.
Can you relate to any of those? Well for me, when I start to suffer from those daily stressors, it affects my health. I can feel my pain start creeping in. My jaw will tighten up to the point I can’t even open it. My body begins to hurt and then before you know it my ear is killing me and my neuralgia is full blown attack. I may or may not be able to walk. It can even be the silliest or smallest triggers, but nonetheless still triggers.
Today I allowed stress to creep in before I was even out of bed and allowed it to literally kick my butt today. I am ashamed to say that I started off my day be being really bratty to my wonderful husband. I could tell it was hurting him but I continued. I was just so irritated and mad and the stressor wasn’t his fault, we were both affected by it. We drove to work and I was very angry and wouldn’t talk to him. When we arrived, he leaned over and grabbed my hand and prayed for us and our day. I stopped and prayed but I was still angry that I didn’t even give God the time He deserved.
Then I went in and tackled the issues we had to face today. I felt my body tensing up so bad that I literally had to squeeze my face to get the pain to release. I finally looked at my husband and gave him a hug and said I was sorry. He hugged me back with such tenderness. He loves me and is so forgiving. That brings me such joy.
As the day went by, Rob worked through his issues and I worked through mine. Just plugging away, and then I got a phone call. It was such good news. All the paperwork that was stressing me out that I had to get going because of an issues with his ex spouse was finally resolved. I will say that it was extremely good news. While the gentlemen on the phone was talking to me I burst into tears and told him how good this news was and how thankful I am that he was able to help me.
I went into my office where my accountant was working with my husband and started crying. They asked what was wrong. I said, nothing is wrong, I just am so thankful that God takes care of all my needs even when I don’t go to him first. He still cares and still helps me. The day continued like that with one thing after another getting resolved.
I came home filled with such joy and such relief, yet my body hurts so bad I can barely move, all because of the stress of the whole thing. But I will tell you I am joyful and I am MOST THANKFUL to GOD FOR CARING FOR ALL MY NEEDS. I know he will help me to rest and restore my body to full function tomorrow so I can then tackle the cluttered house.
Can you relate to stress affecting your health? Was it a big stress that made your health compromised or are you suffering from the result of small stresses today? For me it was a series of big stresses that ultimately caused my health issues, but it is the daily stressors today that keep me from functioning normal.
I don’t know about you, but I am going to get down on my knees tonight and thank God for helping me conquer those stressors today and that He showed me favor despite my poor attitude. And then I am going to each a chocolate bar and watch an episode of One Tree Hill. Wishing you a Stress free evening tonight and a stress free day tomorrow.
P.S. Hug your kids and tell them you love them. That is what God tells us everyday. They need to hear it from us too!