I am never surprised by the strength and love that friends provide. They all serve different rolls and do very different thing - in the end filling my heart so full. I sat at a birthday party tonight and watched a small section of our friends wondering - how did I get so blessed. It amazes me how God provides.
One challenge when I look at my life is how does Brett continue to work and maintain his life and sanity despite my epilepsy. As I have said he is always the first one here for me, the last and everything in between. I know he must keep some independence.
I have gotten friends to help with little (and ladies understand important) hair appointments. I am blessed that my hairdresser is one of my dearest friends. She does everything to not only accommodate but keep me feeling like myself no matter the barriers.
Yesterday I spent the day with a friend that has witnessed my seizures repeatedly - understanding exactly what I do and how to handle it. My hope was despite a seizure Brett could stay at work. Unfortunately, I had one but all went smooth. As soon as Brett heard he came and got me - worried of course. It was very hard to experience the seizure with someone else but I got through. One challenge time will get us through.
That seizure was different - I remember most of it, I know how long it lasted, how long speech was gone- but afterwards I was very confused. I remember Brett getting me ice cream and eating it- this is something I often want after episodes. I don't remember where we went, I don't remember coming home, I don't remember changing or why I did. Luckily Brett identified my confusion and cancelled our dinner date as I wouldn't have been very fun. I went to sleep at some point until Brett woke me up with dinner made.
Today a friend and I went to breakfast while Brett knocked out a big hike. Something dawned on me after breakfast, the diagnosis of epilepsy has made some changes that are very important. I have had seizures now for a year. That part isn't different, only the name is. All of the sudden people feel either more comfortable or responsible to ask how to handle me if I have a seizure. Lots of questions about how they look, what is expected, who does the ativan shot and where? How long will it last? I will have to write an entire other blog answering those questions.
The opposite reaction I have gotten is oh so and so had epilepsy and has forever is fine and you will be too. No worries type approach, comfort with the disease and what it entails.
I see every response I get as valuable. I appreciate that I am safe enough for folks to ask questions and be honest with. I know that as I began writing on Tuesday I wasn't ready for that yet. I am moving through the process. Sometimes maybe I am stronger than others, even though it's a year old to me "EPILEPSY" still sounds brand new. Ordering my med alert bracelet was a real reality that things have changed.
Tonight Kate told me- keep writing whenever you can. A few months ago Nancy told me the same thing. She personally found it so healing when she went through hell. I didn't ignore Nancy, I was a loss for words. It was confusing, scary and physically difficult to do it. Now I understand why, hopefully that will make writing in the future easier.
I close with a happy birthday to Misty - such a beautiful soul. It was wonderful to see you! Darlene thank you for having us. I love your music and only wish the lightening hadn't interrupted our visit.
Showing posts with label wisdom. Show all posts
Showing posts with label wisdom. Show all posts
Saturday, August 11, 2012
Monday, February 13, 2012
Early Morning Reflections
Our Father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespassers as we forgive those that have trespassed against us. Lead us not into temptation but deliver us from evil. For thine is the kingdom the power and the glory forever and ever Amen.
Since my phone call on Friday letting me know the reults of the MRI - I have been blessed by an outpouring of love and support that is nothing unusual from those close. Dinner, snacks, laughter, hugs, drinks, phone calls, offers to help all came pouring in. Although I have been facing debilitating health issues for 2.5 years - the response still surprises me. I immediately feel the warm blanket of love, true friendship, close family.
Friday I texted a very small group of people. Making a phone call and telling someone at that moment was impossible. I was in a little bit of shock looking back. As it was I didn't even get through my intended list- despite even two more days of the weekend. I have felt fear, anger, sadness, fear, frustration, tears, shock, happy for a diagnosis, thankful that its better than some possibilities we've discussed. Millions of questions anxious to understand and symptoms to improve.
I logically know its fairly common - UCLA says @ 1 in 1000 people live with this condition. Physically my symptoms have generally been worse the past couple weeks. Any stress whatsoever always increases them - finding out I have a tumor in my brain area no matter what - adds some stress, aggregates the symptoms, which in turn scares me, You see the cycle.
After finding out, I began slowly sending a few texts explaining the test results. My unitial thought just tell those that knew I was having the test and waiting. I didn't quite get through everyone. Just hearing it - I was exhausted. I did some relaxation followed by a 2 hour nap. NOTE: VERY important lesson I have learned through this, everything is easier after some sleep or even just relaxation. I can handle sleep often proceeded by deep relaxation breathing and repetition of The Lords Prayer in my mind. (your repitition or vizualization of peace must be your own).
I woke to a text from Renee that as we do and have done forever - she was bringing over appetizers, planned to try a new cocktail - a Gimlet and Happy Hour would commence shortly. She and Tia were soon followed by Joe, Tony and Correen. I set to work in the kitchen cooking - therapeutic and along the lines of the 1950s which we all enjoy. I made the dinner as planned for the evening. Salisbury Steak with mushroom gravy, mashed potatoes, peas and of course a Jello salad. Felt wonderful to feed everyone such a strong meal.
Saturday was quiet time with Brett a visit with my grandma that I am so blessed to have here still. My body needed rest. It seemed to be flipping out!
Sunday was comforting old Marilyn Monroe movies, Joe, Rod, Candice and Boo brought dinner and we enjoyed laughter and good times followed by the Grammy's.
I was able to have so many great discussions with loved ones despite how I was feeling - social media options provided just what I needed.
Last night was a rough night physically and emotionally. I went to bed determined to take Sean to school and head into work for a few hours. Unfortunately, my body had other ideas and the jerking started early. Dry mouth, something I haven't talked about much but it was quite annoying last night. Nothing seemed to help. Nausea, Hot and sweaty - obviously my own heat wave when everyone else is wrapped up in quilts.
It is now almost 7 am. I had ativan about 4 am, dozed off and on about an hour all night. I have recited the Lord's Prayer maybe 100s of times over the last night. It helps me refocus, relax, accept the changes of my day. God has truely blessed me! I am so thankful for his peace and direction as I move through this challenge. He has blessed me with a husband, kids, family and friends that couldn't be better. I'm learning that my expectations aren't important. I just need to be comfortable.
We shall see how this day will go. I give my expectations up and will relax.
Thank you all that have been so wonderful throughout this journey!
Since my phone call on Friday letting me know the reults of the MRI - I have been blessed by an outpouring of love and support that is nothing unusual from those close. Dinner, snacks, laughter, hugs, drinks, phone calls, offers to help all came pouring in. Although I have been facing debilitating health issues for 2.5 years - the response still surprises me. I immediately feel the warm blanket of love, true friendship, close family.
Friday I texted a very small group of people. Making a phone call and telling someone at that moment was impossible. I was in a little bit of shock looking back. As it was I didn't even get through my intended list- despite even two more days of the weekend. I have felt fear, anger, sadness, fear, frustration, tears, shock, happy for a diagnosis, thankful that its better than some possibilities we've discussed. Millions of questions anxious to understand and symptoms to improve.
I logically know its fairly common - UCLA says @ 1 in 1000 people live with this condition. Physically my symptoms have generally been worse the past couple weeks. Any stress whatsoever always increases them - finding out I have a tumor in my brain area no matter what - adds some stress, aggregates the symptoms, which in turn scares me, You see the cycle.
After finding out, I began slowly sending a few texts explaining the test results. My unitial thought just tell those that knew I was having the test and waiting. I didn't quite get through everyone. Just hearing it - I was exhausted. I did some relaxation followed by a 2 hour nap. NOTE: VERY important lesson I have learned through this, everything is easier after some sleep or even just relaxation. I can handle sleep often proceeded by deep relaxation breathing and repetition of The Lords Prayer in my mind. (your repitition or vizualization of peace must be your own).
I woke to a text from Renee that as we do and have done forever - she was bringing over appetizers, planned to try a new cocktail - a Gimlet and Happy Hour would commence shortly. She and Tia were soon followed by Joe, Tony and Correen. I set to work in the kitchen cooking - therapeutic and along the lines of the 1950s which we all enjoy. I made the dinner as planned for the evening. Salisbury Steak with mushroom gravy, mashed potatoes, peas and of course a Jello salad. Felt wonderful to feed everyone such a strong meal.
Saturday was quiet time with Brett a visit with my grandma that I am so blessed to have here still. My body needed rest. It seemed to be flipping out!
Sunday was comforting old Marilyn Monroe movies, Joe, Rod, Candice and Boo brought dinner and we enjoyed laughter and good times followed by the Grammy's.
I was able to have so many great discussions with loved ones despite how I was feeling - social media options provided just what I needed.
Last night was a rough night physically and emotionally. I went to bed determined to take Sean to school and head into work for a few hours. Unfortunately, my body had other ideas and the jerking started early. Dry mouth, something I haven't talked about much but it was quite annoying last night. Nothing seemed to help. Nausea, Hot and sweaty - obviously my own heat wave when everyone else is wrapped up in quilts.
It is now almost 7 am. I had ativan about 4 am, dozed off and on about an hour all night. I have recited the Lord's Prayer maybe 100s of times over the last night. It helps me refocus, relax, accept the changes of my day. God has truely blessed me! I am so thankful for his peace and direction as I move through this challenge. He has blessed me with a husband, kids, family and friends that couldn't be better. I'm learning that my expectations aren't important. I just need to be comfortable.
We shall see how this day will go. I give my expectations up and will relax.
Thank you all that have been so wonderful throughout this journey!
Tuesday, October 4, 2011
Wonderful Day
I have successfully set up my etsy account. My new online store via etsy is called Stormy Vintage - of course a play on my pinup name. I am hoping that tomorrow I will be able to begin putting pictures in tomorrow and some items can begin selling. I was blessed enough to feel up to a few garage sales on Friday morning with Brett. I found some amazing vintage patterns, some very vintage style fabric, a handbag and some adorable belts.
Today Correen and I got some time in at a local thrift store. I found some wonderful items. My favorite a late 50's/early 60's shift dress with matching neck scarf. Just adorable. Thanks to both mine and my husbands wonderful parents I was able to gather the inventory that I have collected for the past few years. In addition, I was contacted by a previous publisher with interest of me doing more pinup modeling. Don't forget to check out Pinups and Hot Rods Vol. 1. Perhaps I will participate in future publications. I would love too.
I have also added a widget to my blog - It includes links to anything that I refer to on Amazon. If you use this link I get the opportunity to earn a very little kick back for the reference. Being that I'm not working this could really come in handy. In addition, I spend so much time reading and listening to music - I simply decided I would love to share some of what I am learning with you.
Now the health part of my day. The best news since this nightmare began. I'm not sure if I mentioned it a few weeks ago or not. I decided I would be proactive. After hours of internet research I sent emails to every movement specialist I could find with an email address listed. As you can imagine most of them were return to sender as they were no longer any good. I got a few "I'm not taking new patients". This morning I received a phone call from a Dr. Jerome Lint's office. His staff member told me he is VERY interested in the email I sent (included video's of seizures). He wants to see me immediately. I will see him first thing Thursday!!! No we can see you in 3 weeks. I want to thank God and thank ALL of you that have been praying so much. Please pray that it will go as wonderful.
I luckily still have an appointment October 12 with Dr. Mark Lew at USC. He has an amazing reputation. I am starting to feel hopeful that a diagnosis and perhaps some level of understanding will surface soon. I did go 72 hours without a seizure. Unfortunately last night about midnight I woke up to terrible back pain and within minutes I was seizing. I lasted aout the normal 30 minutes. My back has been terribly sore all day. The other odd symptom I am struggling with the past few days - some edema fairly mild, however extremely painful in my feet and ankles. It doesn't seem to improve much when I stay off my feet - painwise. I have found an amazing product that does help Traumeel. I was introduced to it during my 22 days in the hospital. I can't believe how much it helps. I accidently let myself run out. I miss it so much. Really - anyone with pain even just from a workout. This is it! AND it doesn't smell, and it's not a nasty narcotic/opiate with a ton of terrible side effects.
One thing I did notice today that was rough - the old days not only could I drive myself around to the various thrift stores, I could hit all of them. Today I honestly barely made it through one store. I was exhausted, sore and unable to even enjoy my purchases the end of the day. I ended up sleeping for yours afterwards, taking a very LONG bubble bath with Village Naturals Aches and Pains. listening to my favorite music.
Wonderful reset to say the least - gave me the ability get in set up the Etsy Store. Really got my head in place. Its been quite a scattered day, and my post a bit scattered as well. The best part I feel good today emotionally. The pain is there and difficult, I'm shaking awful becasue I chose to use the laptop, but I got to thrift shop, set up my online store (step one) AND I'm blogging.
I hope you don't mind the Amazon widget. I want to share these wonderful things I have found. I have NO money coming in. Maybe it will work. Please let me know. I don't want to be a sell out. One last thing that is just awesome is a book that reflects some of the things the neurologist staff has been working on with me. Alternative methods of healing. I am loving to drink a chunk of ginger in hot water with a bit of honey. My new morning drink that I am really trying to switch to from coffee - just HOT water and lemon. I feel sooo GOOOD when I do this. Its such minor changes folks. You won't believe it. I just love so far how this book talks about it, just the basics in idiot terms :)
OK my LOVES I must try to go to sleep. Please feedback. Hopefully tomorrow will be as wonderful as today. Hugs to you all that keep me, my family going. Today and my joy would and could not have happened without all of you. We are so blessed.
Sunday, September 11, 2011
Acceptance
I have taken up the inclusion of acupuncture therapy and yoga therapy since I left the hospital. Acupuncture brought up something difficult. I don't truly love myself right now. I thought well no SHIT. Am I supposed to lay here and be thankful to my body further LOVE it that I can't do anything that I believed to love just a few months ago? I have been forced to give up running - it may have been a passion for only a year or so - but I loved it. I loved who I was while I was running, I loved how I felt for the hours after it. The activities related to Rockabilly, Pin-up, all of it - can't make plans to go to anything because who knows what will happen between now and then. Our last planned show I was just getting out of the hospital so guess that one isn't happening. The therapist in her work told me I need to accept myself as I am now. Truly accept it. She further assigned that I call my Grandmother - that I remember having a real conversation with maybe as a child. We have spoken rarely since.
I did as assigned. The next morning at 7 a.m. I called her. I was honest why I was calling her. She told me that it is time I stop trying to impress anyone else - only myself. I've spent my entire life trying to be a protectionist. I've tried to have the best grades, the best job, the best performance. I've even tried with all my heart and soul to apply that brilliance to raising my kids. Guess what you can't be the best mom. They are people that makes them a variable. Nothing I ever do is always going to be right. In fact at the older ages, maybe being a good mom is going to mean being a terrible mom. My grandmother told me it's time to stop fighting with my own Mom about everything. You know what I realized - I don't even know what that means or how to do it. I asked and she wisely told me I will figure it out.
I received many other thoughts from her. I realize now I should have written it down. Those two items however are enough right now. I don't even know what to do with them. Further taken into thought is that I MUST learn how to accept this me, the current me. I'm no longer independent, I'm no longer the strong alone person I always thought I was. I am quite the opposite in fact. Don't want to hear any of it. I don't want to hear that the job I loved for years isn't an option to return to - it no longer exists. In my mind - if I had just been there (not incapable) I could have solved it. I would have saved what I loved as a career. If I wasn't sick my kids and I would be closer and I wouldn't feel like there is a wedge bigger every day. I would be myself not some warped pain medication intolerable version. If I wasn't so sick my house would be clean (especially if I was home a small fraction of what I am) instead I am doing amazing if I start a new load of laundry. I would be able to be a wife, to my husband in all ways - an equal. Instead, I depend on him for everything. It seems to increase every single day. Now I need a babysitter 24/7 in case I have a seizure. Not only do I have "NOTHING WRONG WITH ME THEY CAN FIND". There are no words to provide a diagnosis. I'm just supposed to ACCEPT all of this? Really?
I did as assigned. The next morning at 7 a.m. I called her. I was honest why I was calling her. She told me that it is time I stop trying to impress anyone else - only myself. I've spent my entire life trying to be a protectionist. I've tried to have the best grades, the best job, the best performance. I've even tried with all my heart and soul to apply that brilliance to raising my kids. Guess what you can't be the best mom. They are people that makes them a variable. Nothing I ever do is always going to be right. In fact at the older ages, maybe being a good mom is going to mean being a terrible mom. My grandmother told me it's time to stop fighting with my own Mom about everything. You know what I realized - I don't even know what that means or how to do it. I asked and she wisely told me I will figure it out.
I received many other thoughts from her. I realize now I should have written it down. Those two items however are enough right now. I don't even know what to do with them. Further taken into thought is that I MUST learn how to accept this me, the current me. I'm no longer independent, I'm no longer the strong alone person I always thought I was. I am quite the opposite in fact. Don't want to hear any of it. I don't want to hear that the job I loved for years isn't an option to return to - it no longer exists. In my mind - if I had just been there (not incapable) I could have solved it. I would have saved what I loved as a career. If I wasn't sick my kids and I would be closer and I wouldn't feel like there is a wedge bigger every day. I would be myself not some warped pain medication intolerable version. If I wasn't so sick my house would be clean (especially if I was home a small fraction of what I am) instead I am doing amazing if I start a new load of laundry. I would be able to be a wife, to my husband in all ways - an equal. Instead, I depend on him for everything. It seems to increase every single day. Now I need a babysitter 24/7 in case I have a seizure. Not only do I have "NOTHING WRONG WITH ME THEY CAN FIND". There are no words to provide a diagnosis. I'm just supposed to ACCEPT all of this? Really?
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