For the past 7 years, I have felt like Julius Caesar and I have something in common. Its the day we were both betrayed. Caesar by fellow Romans. Me by my own body. If you have followed my blog for any length of time you know I suffer from Fibromyalgia and an autoimmune known as CREST Syndrome. In the days leading up to this anniversary, I have thought about the past 7 years a lot. Especially in the context of the past year.
I've been doing better. Over the past 15 months I've lost 51 pounds. This has allowed me to move more with less pain. I'm glad I had already started to lose weight when my husband decided to walk out on me. I could not have handled working the jobs I have worked with the pain I had been in. I worked weekends last fall at a Rein Faire. They were long hard days, but I was blessed by working for my friend and fellow Spoonie Ruby. We watched out for each other and made sure not to use up to many spoons each day at take lots of rest breaks. I spent three months working for Target stocking shelves. There were so many days I came home from Target rung out. In January I started to work for my towns Parks and Rec department, where I am also on my feet most of the time. All the while I continued to look for an office job.
I stated to a close friend in January I knew my technical skills were a little out dated, which I felt was keeping me from finding full time work in an office setting. I just didn't know how to go about getting them updated without paying to go back to school. In my current financial situation, that was just not an option. A few weeks after making that statement the opportunity I had been looking for presented itself. A 12 week training program in Application Support Management with job placement help for every successful graduate. Just what I needed!! I went through the multi-interview multi test process and ended up being one of 22 selected (over 90 applied).
Upon finding out I was accepted I felt two things at once. Overjoyed to finally get a professional break and terrified. The training program would be in downtown Dallas Monday - Friday 9-5. So not only would I need my employers to work with my new schedule (Target declined to) but I would need to the spoons to take on this additional task. There were so many days after working at Target and the Rec Center I barely had the spoons to feed myself. How the heck was I going to pull this off for 12 weeks?
My parents have been incredibly supportive through the divorce. In talking to my mom about my new undertaking she expressed concern for me and my health about doing the training program and working my jobs. Thanks to Target not working with me (after telling me we'd talk about it for a week and a half) I only had one job to worry about. Of course this spawned another concern, paying the bills, as I had barely been getting by. Once again my parents are being amazing and are helping me bridge the gap.
So dear reader why am I telling you this? As you know I do tend to make points. Mine is this. For years after getting sick I never thought I'd ever get close to leading a normal life. That I'd never work physical jobs again. Or work full time. I have been in my training program for almost two weeks now. I'm doing it and I'm not just getting by. I'm doing well and keeping up with the homework. I'm doing things again I never thought I would do.
So on this historic day of betrayal I want to send out a message of encouragement. I don't know what is going on in your life, but have hope it will get better. It might not be soon. I had to wait 6 years for mine. Don't give up. You never know what amazing thing might be around the corner. And if your a fellow spoonie - I'd love to connect with you.
Until Next Time
Melissa
Showing posts with label Autoimmune. Show all posts
Showing posts with label Autoimmune. Show all posts
Thursday, March 15, 2018
Tuesday, December 19, 2017
2017 - Year in Review
Dearest Reader,
I must apologize about my silence as of late. Well, It would appear almost all of 2017. There are many times I would have loved to have written to you. I felt it was best not to. My silence has been quite intentional.
2017 was going to be better than 2016. Or at least that was the plan. I had plans to really build my brand. Start a Youtube channel geared towards my fellow spoonies. Blog more. Instagram more. Jump start my jewelry business.
Things in 2017 started off rocky in my personal life. So clearly my attention was elsewhere. Aaron left me in May and I decided to stay fairly silent on the matter. I'm sure he expected me to lash out every which way on social media. Sometimes I don't behave as expected.
I've learned number of things since my marriage broke up. A few I'm going to touch on in this blog. The first thing I learned was you find out who your real friends are real quick in a divorce. For the record, if I ask you have you heard from Aaron and you tell me no, you may want to make sure you are either telling me the truth or I have no way of verifying it. In this instance your insistent no was quickly proven out to be a lie. I was checking cell records daily. Your number was on the text logs a lot. Don't feel bad. A few people got caught that way.
As I said you learn who your real friends are. These are the friends that step up, circle the wagons with you. The friends who call more, check on you more, make sure you're eating once in awhile. I am very blessed to have a number of these amazing friends, both locally and via the internet.
I've learned you are given what you need when you need it. Almost a month after Aaron left, my friend Annie and I were out in my jewelry studio when Annie thought she heard a cat. She did some digging and found some very weak, dehydrated, flea covered kittens that we estimate were about a week old.
Annie and I quickly ran to petsmart and bought a bottle and formula and then went to Target for some Dawn dish washing soap (for the fleas). Did you know kittens need to be fed every three hours? I didn't. Guess what I ended up doing. That's right, feeding kittens every three hours for three or so weeks. I was never so happy when I was able to wean them and they could eat kitten food. So many people told me how amazing I was to do this for the kittens. Maybe yes, probably no. They gave me something to focus on, someone to help. In one small way I could effect positive change in the middle of my life being thrown out of wack. Also, you should know all the kittens found furever homes. I did end up adopting one of the black ones.
I've learned it's okay to be alone. Until a few months ago, I had never lived on my own. I got married in college. I went from having a roommate to having a husband. At first I didn't know what to do with myself. Change is scary, but it's not always bad. I've learned to embrace the solitude and the quiet. I boxed up things that weren't mine. I rearranged rooms. I made this space mine and mine alone. I turned my house into a place of peace and rest.
While I was learning how to live alone, I also learned I really don't know who I am. I recently ran across this and it made me think:
It was like somebody took a bucket of cold water and threw it on me. Talk about a light bulb moment. I'm still thinking about it and trying to figure out what to do with it.
Traditionally I try to learn something new each year to improve myself. It's typically a skill of some kind. Find something I'm interested in and take a class or read up about it. So here is what I've decided. 2018 is going to be the year I learn about me. Old baggage is going to be left at the curb for garbage collection. Toxic people no longer have a place in my life. It's time to get to know me, a balanced and healthy me.
And here is some food for thought. Despite society telling me I should be upset over the break up of my marriage, I've found I'm a much happier person. And healthier (to date I'm down 39 pounds). They say a picture is worth a thousand words, so here you go!
Until next time
Melissa
I must apologize about my silence as of late. Well, It would appear almost all of 2017. There are many times I would have loved to have written to you. I felt it was best not to. My silence has been quite intentional.
2017 was going to be better than 2016. Or at least that was the plan. I had plans to really build my brand. Start a Youtube channel geared towards my fellow spoonies. Blog more. Instagram more. Jump start my jewelry business.
Things in 2017 started off rocky in my personal life. So clearly my attention was elsewhere. Aaron left me in May and I decided to stay fairly silent on the matter. I'm sure he expected me to lash out every which way on social media. Sometimes I don't behave as expected.
I've learned number of things since my marriage broke up. A few I'm going to touch on in this blog. The first thing I learned was you find out who your real friends are real quick in a divorce. For the record, if I ask you have you heard from Aaron and you tell me no, you may want to make sure you are either telling me the truth or I have no way of verifying it. In this instance your insistent no was quickly proven out to be a lie. I was checking cell records daily. Your number was on the text logs a lot. Don't feel bad. A few people got caught that way.
As I said you learn who your real friends are. These are the friends that step up, circle the wagons with you. The friends who call more, check on you more, make sure you're eating once in awhile. I am very blessed to have a number of these amazing friends, both locally and via the internet.
I've learned you are given what you need when you need it. Almost a month after Aaron left, my friend Annie and I were out in my jewelry studio when Annie thought she heard a cat. She did some digging and found some very weak, dehydrated, flea covered kittens that we estimate were about a week old.
Annie and I quickly ran to petsmart and bought a bottle and formula and then went to Target for some Dawn dish washing soap (for the fleas). Did you know kittens need to be fed every three hours? I didn't. Guess what I ended up doing. That's right, feeding kittens every three hours for three or so weeks. I was never so happy when I was able to wean them and they could eat kitten food. So many people told me how amazing I was to do this for the kittens. Maybe yes, probably no. They gave me something to focus on, someone to help. In one small way I could effect positive change in the middle of my life being thrown out of wack. Also, you should know all the kittens found furever homes. I did end up adopting one of the black ones.
I've learned it's okay to be alone. Until a few months ago, I had never lived on my own. I got married in college. I went from having a roommate to having a husband. At first I didn't know what to do with myself. Change is scary, but it's not always bad. I've learned to embrace the solitude and the quiet. I boxed up things that weren't mine. I rearranged rooms. I made this space mine and mine alone. I turned my house into a place of peace and rest.
While I was learning how to live alone, I also learned I really don't know who I am. I recently ran across this and it made me think:
It was like somebody took a bucket of cold water and threw it on me. Talk about a light bulb moment. I'm still thinking about it and trying to figure out what to do with it.
Traditionally I try to learn something new each year to improve myself. It's typically a skill of some kind. Find something I'm interested in and take a class or read up about it. So here is what I've decided. 2018 is going to be the year I learn about me. Old baggage is going to be left at the curb for garbage collection. Toxic people no longer have a place in my life. It's time to get to know me, a balanced and healthy me.
And here is some food for thought. Despite society telling me I should be upset over the break up of my marriage, I've found I'm a much happier person. And healthier (to date I'm down 39 pounds). They say a picture is worth a thousand words, so here you go!
Until next time
Melissa
Sunday, December 18, 2016
Self Care and Why You Need To Do It
Dear Reader,
It's time we talked about self care. This is important for normal people and for us spoonies. I know a lot of you don't invest in self care which is why we are going to have ourselves a little chat. Now you may be asking yourself, what makes this random blogger an expert? Well dear reader, I have lived with fibromyalgia and an autoimmune disease called CREST for over 5 years now. If I do not take care of myself daily and set up boundaries I get myself in a whole mess of trouble. Trouble equals a flare and me being in bed for days if not weeks. It is my goal in this blog to impart to you some of my hard-gained knowledge in the world of self care.
Go grab yourself a drink. Coffee or tea if that's what you need. Something stronger if that will help. I'll wait... Are you ready? Then let's do this.
Step One - Figure out the energy you have. In the spoonie community we call this our number of spoons. For my readers who might not be familiar with Spoon Theory you may find it here. Now your energy level should be what you can accomplish on a normal day. Not a full on emergency situation day. This is the energy level you have without being totally wiped out. The kind of day where you go to bed tired, not the kind of day where you literally fall into bed.
Step Two - Now that you have figured out what you can get done in a day, you need to prioritize your day. What must get done versus what you'd like to get done. These priorities might change from day to day. For example, must the laundry get done today? If you still have clean clothes to wear and you have more pressing matters, I'd put that on the "like to get done" list. It is very important you learn the difference between "like to get done" and "must get done." You are not Superman or Superwoman. There is no reward for getting it all done right this minute.
Step Three - Learn to forgive yourself. I know you have been taught you must get everything done in one day and what you don't get done you must lay in bed and flagellate yourself over. I know, I know, we have been conditioned by society that we must put on this facade of a perfect life. Guess what, there are no awards for having the perfectly cleaned house or always helping out people when they ask for it. Which leads me to step four...
Step Four - The magic word. This is going to be a tough one. Deep breath and repeat after me. NO. Let's try it again. NO. Use this magic word (NO) to create boundaries for yourself. Your time on this planet is finite. Don't waste it all doing everything for everyone. You can't be all things. If you are running around trying to do everything asked of you, you will have no energy for yourself.
Step four is a very hard step. I get it. You want to be a good friend, a good sister, a good child. However, if you are constantly using your energy for everyone else and leaving nothing for you, your batteries will eventually just run down to zero. Then what? You can't do anything on a dead battery. Learn to set boundaries and take care of yourself first. This step is critical for self care.
Are you still with me? You've evaluated your energy, figured out the difference between have to's and like to's, learned to forgive yourself for not being superhuman, and learned to say no and set firm boundaries. Are we ready to move on?
Step Five - Recharge. What can you do just for you? This might be taking a bubble bath, or reading a good book with a glass of wine. Maybe going for a walk. Figure out what you can do just for you. I know you're used to putting yourself last, but this must change, dear reader. You need to put your own needs first. Now now, I'm not telling you to be selfish and never do anything for anyone else. All I'm saying is put yourself first, take care of what you need to do, including recharging your batteries. If you have energy left over after you've done what YOU NEED to do, then you can help others.
As to not overload you dear reader, I am going to leave it there. You can start practicing these five steps and see how it goes. Please report in on how you feel after practicing. You know I love to hear from you!
Do you have a recommendation on self care? Did I miss a step? Please comment below. I too am learning how to do this "self care" thing.
Until Next Time <3
Melissa
It's time we talked about self care. This is important for normal people and for us spoonies. I know a lot of you don't invest in self care which is why we are going to have ourselves a little chat. Now you may be asking yourself, what makes this random blogger an expert? Well dear reader, I have lived with fibromyalgia and an autoimmune disease called CREST for over 5 years now. If I do not take care of myself daily and set up boundaries I get myself in a whole mess of trouble. Trouble equals a flare and me being in bed for days if not weeks. It is my goal in this blog to impart to you some of my hard-gained knowledge in the world of self care.
Go grab yourself a drink. Coffee or tea if that's what you need. Something stronger if that will help. I'll wait... Are you ready? Then let's do this.
Step One - Figure out the energy you have. In the spoonie community we call this our number of spoons. For my readers who might not be familiar with Spoon Theory you may find it here. Now your energy level should be what you can accomplish on a normal day. Not a full on emergency situation day. This is the energy level you have without being totally wiped out. The kind of day where you go to bed tired, not the kind of day where you literally fall into bed.
Step Two - Now that you have figured out what you can get done in a day, you need to prioritize your day. What must get done versus what you'd like to get done. These priorities might change from day to day. For example, must the laundry get done today? If you still have clean clothes to wear and you have more pressing matters, I'd put that on the "like to get done" list. It is very important you learn the difference between "like to get done" and "must get done." You are not Superman or Superwoman. There is no reward for getting it all done right this minute.
Step Three - Learn to forgive yourself. I know you have been taught you must get everything done in one day and what you don't get done you must lay in bed and flagellate yourself over. I know, I know, we have been conditioned by society that we must put on this facade of a perfect life. Guess what, there are no awards for having the perfectly cleaned house or always helping out people when they ask for it. Which leads me to step four...
Step Four - The magic word. This is going to be a tough one. Deep breath and repeat after me. NO. Let's try it again. NO. Use this magic word (NO) to create boundaries for yourself. Your time on this planet is finite. Don't waste it all doing everything for everyone. You can't be all things. If you are running around trying to do everything asked of you, you will have no energy for yourself.
Step four is a very hard step. I get it. You want to be a good friend, a good sister, a good child. However, if you are constantly using your energy for everyone else and leaving nothing for you, your batteries will eventually just run down to zero. Then what? You can't do anything on a dead battery. Learn to set boundaries and take care of yourself first. This step is critical for self care.
Are you still with me? You've evaluated your energy, figured out the difference between have to's and like to's, learned to forgive yourself for not being superhuman, and learned to say no and set firm boundaries. Are we ready to move on?
Step Five - Recharge. What can you do just for you? This might be taking a bubble bath, or reading a good book with a glass of wine. Maybe going for a walk. Figure out what you can do just for you. I know you're used to putting yourself last, but this must change, dear reader. You need to put your own needs first. Now now, I'm not telling you to be selfish and never do anything for anyone else. All I'm saying is put yourself first, take care of what you need to do, including recharging your batteries. If you have energy left over after you've done what YOU NEED to do, then you can help others.
As to not overload you dear reader, I am going to leave it there. You can start practicing these five steps and see how it goes. Please report in on how you feel after practicing. You know I love to hear from you!
Do you have a recommendation on self care? Did I miss a step? Please comment below. I too am learning how to do this "self care" thing.
Until Next Time <3
Melissa
Friday, November 11, 2016
Body Positivity And Learning To Love Yourself
What do you know about the body positive movement? Maybe you've seen a Dove ad with women of all shapes and sizes. Maybe you saw the Lane Bryant campaign of I'm No Angel. If you're on Instagram maybe you even follow Effyourbeautystandards. If you don't know about Body Positive, it's about accepting all shapes, sizes, and colors and celebrating them. It's about rejecting what we've been told is beautiful by the world (and mainly advertisers and the fashion industry) and finding the beauty everyone has.
I've been told by a number of people "I love your confidence" or "You're so brave to pose for pictures like that." When I get told these things it's almost if there is an unasked question of how do I get that confidence? Maybe some even think I've always had it (I haven't). I've been told these things enough that I've decided that I should make the keys to the kingdom into a blog.
For a very long time I derived my self-confidence and self-worth from the knowledge that I'm fairly intelligent. I did well in school. I learn things fast and I'm a great problem solver. I've never been a shy person and I'm quite happy to tell you my opinion. I would actually lose patience quite easily with people who couldn't keep up with intellectual conversation. When it came to beauty however, I didn't think much of myself. I didn't think I was a troll, but I didn't think of myself as pretty either. When my husband and I started dating he would tell me how beautiful I was and I would laugh at him. He was blinded by love! How sweet.
I continued on this path of deriving my self-worth from my intellegence and, after college, from my career. I was a great employee (I have the awards to back it up). So what happens when you get sick, doctor after doctor can't figure out why, and you eventually lose your job? Talk about having a bubble burst. Even though I was no longer working I was still intellegent. Which is just fine and dandy. Who am I going to prove it to? The walls of my house and my pets?
People with chronic conditions can really take a hit to their self-worth, especially if they are house bound. Plus there is the added bonus of weight gain with a lot of the medications. Nothing makes you feel more confident than getting larger and having your clothes no longer fit. Add to that having days where you can't get out of bed and you are living in your pajamas. You can really start to feel like you are nothing.
Three years ago I was fortunate enough to kind of stumble into a community of performance artists in Dallas who celebrate everyone. It wasn't just skinny people or traditionally beautiful people on stage. I saw large women on stage. I saw people who didn't fit the commercialized mold of beautiful. I was intrigued. I also started taking some dance classes. I felt uncoordinated and very unfit at first. I had lost a lot of what little coordination I had due to my fibromyalgia. But my dance teachers encouraged me and little by little it came back! As it came back I felt more confident; I held my head higher.
About this same time I was introduced to a local photographer and make up artist. Having my makeup done by Vivienne Vermuth is a game changer. You look into the mirror and you don't recognize yourself. Then you go in front of Dee Hill; as she shoots each picture she gives you words of encouragement. You hear things like "beautiful, oh wow, stunning!" Somewhere during the shoot your inner light comes on!
I've also done photoshoots with Shoshana Portnoy and her right hand make up artist LaDonna Stein. They are also amazing to work with and their finished product always shines! You can find them at Dallas Pinup.
Am I saying you must go do a photoshoot like this to get confidence? I'm not advocating that at all. What I am advocating is to find things that boost your confidence. What makes you feel good about yourself? "Nothing" is not the right answer. There is something amazing about you, I know it! Find that little nugget of amazing and grow it. The trick to confidence is you MUST learn to love yourself.
I can hear the objections already. Stop. Just stop. You are amazing. You are beautiful. You're right, I don't know you. But I do know every human being on this planet is beautiful. You are beautiful because you are unique. You are beautiful because there is only one of you. See where I'm going? That's right, start to love yourself. Find those things that make you YOU and flaunt them!
Find your tribe. Find the people who will encourage you. Get rid of the toxic people in your life. If they don't add to your existence, you don't need them. Surround yourself with people who love you just the way you are. This is your tribe. These are the people that will remind you how special you are in times where you don't see it yourself.
For my spoonies, I know this can be especially difficult, especially if you are housebound. That's okay. You have the internet and you've already found me. You can join my tribe. I have a bunch of friends who I only know through the internet. Nothing is worse than feeling alone. I know. Come join us so you don't have to go through your illness by yourself. There are people just like you all over the internet.
I hope this blog has helped you start the first step on loving yourself. If you need more enouragement, just let me know. I'm always happy to send love and encouragement through the internet.
Until Next Time,
Melissa
I've been told by a number of people "I love your confidence" or "You're so brave to pose for pictures like that." When I get told these things it's almost if there is an unasked question of how do I get that confidence? Maybe some even think I've always had it (I haven't). I've been told these things enough that I've decided that I should make the keys to the kingdom into a blog.
For a very long time I derived my self-confidence and self-worth from the knowledge that I'm fairly intelligent. I did well in school. I learn things fast and I'm a great problem solver. I've never been a shy person and I'm quite happy to tell you my opinion. I would actually lose patience quite easily with people who couldn't keep up with intellectual conversation. When it came to beauty however, I didn't think much of myself. I didn't think I was a troll, but I didn't think of myself as pretty either. When my husband and I started dating he would tell me how beautiful I was and I would laugh at him. He was blinded by love! How sweet.
I continued on this path of deriving my self-worth from my intellegence and, after college, from my career. I was a great employee (I have the awards to back it up). So what happens when you get sick, doctor after doctor can't figure out why, and you eventually lose your job? Talk about having a bubble burst. Even though I was no longer working I was still intellegent. Which is just fine and dandy. Who am I going to prove it to? The walls of my house and my pets?
People with chronic conditions can really take a hit to their self-worth, especially if they are house bound. Plus there is the added bonus of weight gain with a lot of the medications. Nothing makes you feel more confident than getting larger and having your clothes no longer fit. Add to that having days where you can't get out of bed and you are living in your pajamas. You can really start to feel like you are nothing.
Three years ago I was fortunate enough to kind of stumble into a community of performance artists in Dallas who celebrate everyone. It wasn't just skinny people or traditionally beautiful people on stage. I saw large women on stage. I saw people who didn't fit the commercialized mold of beautiful. I was intrigued. I also started taking some dance classes. I felt uncoordinated and very unfit at first. I had lost a lot of what little coordination I had due to my fibromyalgia. But my dance teachers encouraged me and little by little it came back! As it came back I felt more confident; I held my head higher.
About this same time I was introduced to a local photographer and make up artist. Having my makeup done by Vivienne Vermuth is a game changer. You look into the mirror and you don't recognize yourself. Then you go in front of Dee Hill; as she shoots each picture she gives you words of encouragement. You hear things like "beautiful, oh wow, stunning!" Somewhere during the shoot your inner light comes on!
 |
| Photo by Dee Hill. HAMU by Vivienne Vermuth |
I've also done photoshoots with Shoshana Portnoy and her right hand make up artist LaDonna Stein. They are also amazing to work with and their finished product always shines! You can find them at Dallas Pinup.
 |
| Photo by Shoshana Portnoy. HAMU by LaDonna Stein |
Am I saying you must go do a photoshoot like this to get confidence? I'm not advocating that at all. What I am advocating is to find things that boost your confidence. What makes you feel good about yourself? "Nothing" is not the right answer. There is something amazing about you, I know it! Find that little nugget of amazing and grow it. The trick to confidence is you MUST learn to love yourself.
I can hear the objections already. Stop. Just stop. You are amazing. You are beautiful. You're right, I don't know you. But I do know every human being on this planet is beautiful. You are beautiful because you are unique. You are beautiful because there is only one of you. See where I'm going? That's right, start to love yourself. Find those things that make you YOU and flaunt them!
Find your tribe. Find the people who will encourage you. Get rid of the toxic people in your life. If they don't add to your existence, you don't need them. Surround yourself with people who love you just the way you are. This is your tribe. These are the people that will remind you how special you are in times where you don't see it yourself.
For my spoonies, I know this can be especially difficult, especially if you are housebound. That's okay. You have the internet and you've already found me. You can join my tribe. I have a bunch of friends who I only know through the internet. Nothing is worse than feeling alone. I know. Come join us so you don't have to go through your illness by yourself. There are people just like you all over the internet.
I hope this blog has helped you start the first step on loving yourself. If you need more enouragement, just let me know. I'm always happy to send love and encouragement through the internet.
Until Next Time,
Melissa
Thursday, November 3, 2016
It's Been Awhile...Let's Catch Up
I stopped blogging over three years ago. I'm not sure why. But in the last few months I've been thinking I need to revive this blog and get back at it. So let's catch up (and three years is a lot of ground to cover, so grab a drink and settle in for a long one).
Through my jewelry and vending at various events I made some new friends and got involved in an amazing performance art community here in the Dallas area. In 2015 I even went to work part time for an amazing company. Overall life got better. I still had bad days but they seemed to be fewer. Life was pretty good for a couple of years.
Then on December 26th, 2015 my world was rocked. If you're friends with me on Facebook you know a little about this date. That's the day an EF4 tornado ripped through my hometown of Rowlett, Texas. This blog is the first time I've REALLY talked about how it affected me. It's been 10 months and I've written this blog in my head a thousand times, but I could never bring myself to really put it out there. Until now.
I like to keep things fairly upbeat. I don't hide the bad things or the not so good things. I've blogged about my fibromyalgia and my autoimmune disorder. I just try to not let them define me or use them to get attention or pity from others. I try to focus on good things or funny things. People don't need to know about my problems or how I really feel. They have their own issues. So why am I writting this blog? Because I feel this topic is too important to hide. So let's talk about the night of the tornado.
It was the day after Christmas. In fact it was a pretty nice day and we had the windows open. It was warm and beautiful. A cold front was expected later that night but thats not unusual. The weather varies in Texas. There was even a possibility of storms. As it became evening the threat of storms became greater, but I wasn't too concerned. I live on what is known as The Peninsula in Rowlett. We are on this strip of land in the middle of Lake Ray Hubbard. Traditionally severe weather has either gone to the north or to the south of us. I've lived here for 15 years and we had never had any severe weather related damage to out house or vehicles. I was so unconcerned I wasn't even watching the weather. It was a Netflix and chill kind of night.
My husband finally was said we should turn on the news and watch the weather. Okay fine. Another thing you need to understand is I grew up in Upstate New York. Winter weather doesn't phase me. Here in Texas, when we get ice and snow the local TV stations make it out to be there is an impending apocalypse. So I've come to ingore the "we're all going to die" hyperbole the local stations spew.
As the line of storms grew closer my husband went outside to watch. He's an Iowa boy and apparently tornadoes are events to be watched there. Not long after Aaron went outside to watch he came running back in saying we needed to take cover. Houses here do not have basements so taking cover means to go to the center of the house to a room with no windows. We attempted to get the dogs to go with us and about this point I could hear the awful sound a tornado makes. Three dogs went with Aaron. I was chasing down a fourth dog when the tornado hit. We lost power and you could hear everything hitting the house. It was terrifying and then it was over.
Flash lights were turned on. Damage was checked. Neighbors were checked on and loose dogs were put in our backyard as our fence was still standing. It was chaos. After things kind of calmed down here Aaron said we should go check on my parents' house. My parents were visiting my brother in North Carolina for Christmas and we were watching the house and feeding the cat. Back in 2014 my parents had purchaed a second house just two blocks from my house. We walked over there (there were shingles and nails sprinkled throughout the streets and my husband didn't want to replace tires on his truck) expecting to need to maybe board up some windows. We grabbed our cat carrier just in case we needed to grab Spike (the family cat). I was not prepared for what we were to find.
As you can see there was nothing left. This 3300 square foot house was just gone. Picking through the debris took a number of days and a number of volunteers. My parents got here as fast as they could. My brother came from North Carolina. A friend of my father's from NY came down. The damage was overwhelming.
For the first week after the tornado it was just go go go. Help recover items from the debris while there was light and clean recovered items and wash recovered laundry at night (once power was restored which was three days). At first I didn't sleep at night because there was stuff that needed done. I was also on Facebook a lot trying to keep up with the news. The tornado took a diagonal path across the peninsula.
My parents had lost everything, including a number of family heirlooms. My neighbors lost a lot. My neighborhood looked like a war zone. There was grief, loss, and devastation everywhere I looked. For about a week I physically was able to hold up; considering my fibromyalgia and autoimmune, this was an outstanding amount of time. After about a week I was forced to bed with a flair.
And then I was able to think, able to absorb everything that had happened. It also allowed me time to let the survivors guilt settle in. From there I spiraled downward. I was unable to sleep at night, even with the help of Ambien. I then tried Ambien and alcohol (which you're not supposed to do). I tried other combinations I won't go into. Night became a time of total terror. I was able to sleep during the day sometimes. I stopped leaving the house. I even hated to walk out my front door to get the mail. Eventually it got to the point where I rarely left the master bedroom.
For reasons I won't get into seeking professional help was not an option. I knew my mental state had gotten very bad. Any type of thunderstorm or threat of a storm triggered me. We had a near miss with our house (pretty minimal damage; houses literally across the street were total losses). Any storm felt like it was going to happen all over again but this time it would take us out. Some TV shows would trigger me. Anything with explosions that caused destruction were hard to watch.
Luckily I have some really amazing friends who I chat with via Facebook Messanger reguarly. One friend (Jane) was my rock. I don't know how I would have gotten through this horrible time without her. Another friend (Kate) gave me the suggestion that put me on my path to recovery. Kate suggested I take up gardening. Around April I started planting vegtables and herbs. Then I started a fairy garden. By the beginning of June I had transformed my backyard into a tranquil space. The work of creating a safe space and helping plants grow really helped to heal my devastation.
I started to go out with friends more. I'd still sometimes have panic attacks leaving the house. But I had to push through it. I even took a road trip with my mom and visited upstate NY twice (I flew up to help her drive to Texas to take care of some business, then helped her drive back three weeks later and flew home). Going back home and seeing long time friends (20 years+) also really helped to ground and recenter me. I came home from my second trip feeling better than I had in months.
If you've stuck with me this long, you're probably wondering why I wrote this large tome. I have two reasons. One, to bring awareness to things like depression, anxiety, and PTSD. I know a number of people that stuggle with these and I now have a better understanding of them. Obviously my poor mental state was caused by an event. I still get triggered occassionally but I'm working on healing. I know some people have depression and general anxiety and that is something you don't just get over. Those are conditions that need medication to be managed. For some reason there is a stigma attached with metal illness and there shouldn't be. We don't judge people who are diabetic or have heart conditions. I would like to see awareness raised for mental illness and the stigma eradicated.
My second reason for this blog is I want to get back to blogging so I see this post as a jump start. Earlier this year I started a Facebook group for people like me (Spoonies) who have a chronic condition. I started it out of a need to connect with others like myself. Little did I know how rewarding it would be to connect people so they can help and support others like them. It's powerful just to know you're not alone. I'd like to take it a step further and make this blog spoonie-centric. It will still be my random thoughts and it will still be all over the place. However my goal is to try to make it more focused on my spoonie lifestyle. It will still be applicable to everyone, just more suited to those of us with chronic conditions.
So there it is. I think we've caught up. I hope this blog finds you, my dear readers, well and I will catch you again soon.
Until Next Time (and not three years from now),
Melissa
Through my jewelry and vending at various events I made some new friends and got involved in an amazing performance art community here in the Dallas area. In 2015 I even went to work part time for an amazing company. Overall life got better. I still had bad days but they seemed to be fewer. Life was pretty good for a couple of years.
Then on December 26th, 2015 my world was rocked. If you're friends with me on Facebook you know a little about this date. That's the day an EF4 tornado ripped through my hometown of Rowlett, Texas. This blog is the first time I've REALLY talked about how it affected me. It's been 10 months and I've written this blog in my head a thousand times, but I could never bring myself to really put it out there. Until now.
I like to keep things fairly upbeat. I don't hide the bad things or the not so good things. I've blogged about my fibromyalgia and my autoimmune disorder. I just try to not let them define me or use them to get attention or pity from others. I try to focus on good things or funny things. People don't need to know about my problems or how I really feel. They have their own issues. So why am I writting this blog? Because I feel this topic is too important to hide. So let's talk about the night of the tornado.
It was the day after Christmas. In fact it was a pretty nice day and we had the windows open. It was warm and beautiful. A cold front was expected later that night but thats not unusual. The weather varies in Texas. There was even a possibility of storms. As it became evening the threat of storms became greater, but I wasn't too concerned. I live on what is known as The Peninsula in Rowlett. We are on this strip of land in the middle of Lake Ray Hubbard. Traditionally severe weather has either gone to the north or to the south of us. I've lived here for 15 years and we had never had any severe weather related damage to out house or vehicles. I was so unconcerned I wasn't even watching the weather. It was a Netflix and chill kind of night.
My husband finally was said we should turn on the news and watch the weather. Okay fine. Another thing you need to understand is I grew up in Upstate New York. Winter weather doesn't phase me. Here in Texas, when we get ice and snow the local TV stations make it out to be there is an impending apocalypse. So I've come to ingore the "we're all going to die" hyperbole the local stations spew.
As the line of storms grew closer my husband went outside to watch. He's an Iowa boy and apparently tornadoes are events to be watched there. Not long after Aaron went outside to watch he came running back in saying we needed to take cover. Houses here do not have basements so taking cover means to go to the center of the house to a room with no windows. We attempted to get the dogs to go with us and about this point I could hear the awful sound a tornado makes. Three dogs went with Aaron. I was chasing down a fourth dog when the tornado hit. We lost power and you could hear everything hitting the house. It was terrifying and then it was over.
Flash lights were turned on. Damage was checked. Neighbors were checked on and loose dogs were put in our backyard as our fence was still standing. It was chaos. After things kind of calmed down here Aaron said we should go check on my parents' house. My parents were visiting my brother in North Carolina for Christmas and we were watching the house and feeding the cat. Back in 2014 my parents had purchaed a second house just two blocks from my house. We walked over there (there were shingles and nails sprinkled throughout the streets and my husband didn't want to replace tires on his truck) expecting to need to maybe board up some windows. We grabbed our cat carrier just in case we needed to grab Spike (the family cat). I was not prepared for what we were to find.
 |
| Before and after of my parents' home |
As you can see there was nothing left. This 3300 square foot house was just gone. Picking through the debris took a number of days and a number of volunteers. My parents got here as fast as they could. My brother came from North Carolina. A friend of my father's from NY came down. The damage was overwhelming.
For the first week after the tornado it was just go go go. Help recover items from the debris while there was light and clean recovered items and wash recovered laundry at night (once power was restored which was three days). At first I didn't sleep at night because there was stuff that needed done. I was also on Facebook a lot trying to keep up with the news. The tornado took a diagonal path across the peninsula.
 |
| Aerial shot of the tornado path. The red dot is where my parents house was. I don't know who took the original aerial shot. |
My parents had lost everything, including a number of family heirlooms. My neighbors lost a lot. My neighborhood looked like a war zone. There was grief, loss, and devastation everywhere I looked. For about a week I physically was able to hold up; considering my fibromyalgia and autoimmune, this was an outstanding amount of time. After about a week I was forced to bed with a flair.
And then I was able to think, able to absorb everything that had happened. It also allowed me time to let the survivors guilt settle in. From there I spiraled downward. I was unable to sleep at night, even with the help of Ambien. I then tried Ambien and alcohol (which you're not supposed to do). I tried other combinations I won't go into. Night became a time of total terror. I was able to sleep during the day sometimes. I stopped leaving the house. I even hated to walk out my front door to get the mail. Eventually it got to the point where I rarely left the master bedroom.
For reasons I won't get into seeking professional help was not an option. I knew my mental state had gotten very bad. Any type of thunderstorm or threat of a storm triggered me. We had a near miss with our house (pretty minimal damage; houses literally across the street were total losses). Any storm felt like it was going to happen all over again but this time it would take us out. Some TV shows would trigger me. Anything with explosions that caused destruction were hard to watch.
Luckily I have some really amazing friends who I chat with via Facebook Messanger reguarly. One friend (Jane) was my rock. I don't know how I would have gotten through this horrible time without her. Another friend (Kate) gave me the suggestion that put me on my path to recovery. Kate suggested I take up gardening. Around April I started planting vegtables and herbs. Then I started a fairy garden. By the beginning of June I had transformed my backyard into a tranquil space. The work of creating a safe space and helping plants grow really helped to heal my devastation.
 |
| Collage of my Fairy Garden |
I started to go out with friends more. I'd still sometimes have panic attacks leaving the house. But I had to push through it. I even took a road trip with my mom and visited upstate NY twice (I flew up to help her drive to Texas to take care of some business, then helped her drive back three weeks later and flew home). Going back home and seeing long time friends (20 years+) also really helped to ground and recenter me. I came home from my second trip feeling better than I had in months.
If you've stuck with me this long, you're probably wondering why I wrote this large tome. I have two reasons. One, to bring awareness to things like depression, anxiety, and PTSD. I know a number of people that stuggle with these and I now have a better understanding of them. Obviously my poor mental state was caused by an event. I still get triggered occassionally but I'm working on healing. I know some people have depression and general anxiety and that is something you don't just get over. Those are conditions that need medication to be managed. For some reason there is a stigma attached with metal illness and there shouldn't be. We don't judge people who are diabetic or have heart conditions. I would like to see awareness raised for mental illness and the stigma eradicated.
My second reason for this blog is I want to get back to blogging so I see this post as a jump start. Earlier this year I started a Facebook group for people like me (Spoonies) who have a chronic condition. I started it out of a need to connect with others like myself. Little did I know how rewarding it would be to connect people so they can help and support others like them. It's powerful just to know you're not alone. I'd like to take it a step further and make this blog spoonie-centric. It will still be my random thoughts and it will still be all over the place. However my goal is to try to make it more focused on my spoonie lifestyle. It will still be applicable to everyone, just more suited to those of us with chronic conditions.
So there it is. I think we've caught up. I hope this blog finds you, my dear readers, well and I will catch you again soon.
Until Next Time (and not three years from now),
Melissa
Friday, July 20, 2012
Crossroad
Do you ever feel like your life is at a crossroads? You are standing in the middle of the intersection, but there are no signs to tell you which way to turn? I've encountered this throughout my life and I feel like I am there again. While I am not a fan of GPS devices (I have been known to have pretty good arguments with my Garmin), I do wish life came with one.
After I lost my job last November due to my health issues, I decided to focus on doing my jewelry 100% of the time (instead of as a side business). Did I expect to become the next "it" jeweler to Hollywood stars and the uber rich overnight? No (but don't get me wrong, I would take it). I know that running a small business takes time to build and that it would be a lot of hard work and it would be lean for awhile. I am not afraid of hard work and I'm not afraid of making sacrifices.
What I didn't fully understand was how nice having a regular paycheck really REALLY was. While I love being my own boss (okay, kind of, we all know the Feline Union runs this joint) I find there are months where I really hate the paycheck. I have also found I miss having coworkers. I have found virtual coworkers through Twitter and Etsy, but it's just not the same.
Now that I have a diagnosis and a management plan in place (and thank the Lord above for finally connecting me with a knowledgeable doctor who actually cares), I decided to test the job market waters. I actually had an interview shortly after I applied to a company.
It is at this point in my blog I would like to take a small "commercial" break and bring you this public service announcement. If you are going to bring someone in for an interview and have them drive 25 miles for said interview (50 miles round trip plus tolls), that's really no small thing. If you are going to ask them back for two more interviews that same week (now 150 miles and triple tolls) that's a big thing. If you tell the interviewee that you will have a decision that next week, do not make them email you twice over the next three weeks asking for an update to simply reply with a form email telling them thanks but no thanks. That is not the level of customer service I know for a fact you ask of your employees. If you tried this on one of your clients, you would surely be fired. Remember, what goes around comes around. And now back to our blog...
So here is my dilemma: Do I continue to test the job market waters? Do I have faith that my business will continue to grow and just tough it out? I have been helping my friend two days a week at her antique shop, which I enjoy. I get to play with antiques and it gets me out of the house (and away from the Feline Union that likes to shake me down for kitty treats). It's a nice "part time" job and I'm thankful for it. However at times it makes me yearn for the days where I sat behind a desk and played Corporate Barbie.
At the end of the day, all these variables, all the positives and all the negatives don't point in one direction, which leads me to feel like I'm standing in the middle of the road wondering which way to go. Lacking clear direction is outside my comfort zone (just ask my Garmin). What are your thoughts on my current situation, Dear Reader?
Until Tomorrow - Melissa
After I lost my job last November due to my health issues, I decided to focus on doing my jewelry 100% of the time (instead of as a side business). Did I expect to become the next "it" jeweler to Hollywood stars and the uber rich overnight? No (but don't get me wrong, I would take it). I know that running a small business takes time to build and that it would be a lot of hard work and it would be lean for awhile. I am not afraid of hard work and I'm not afraid of making sacrifices.
What I didn't fully understand was how nice having a regular paycheck really REALLY was. While I love being my own boss (okay, kind of, we all know the Feline Union runs this joint) I find there are months where I really hate the paycheck. I have also found I miss having coworkers. I have found virtual coworkers through Twitter and Etsy, but it's just not the same.
Now that I have a diagnosis and a management plan in place (and thank the Lord above for finally connecting me with a knowledgeable doctor who actually cares), I decided to test the job market waters. I actually had an interview shortly after I applied to a company.
It is at this point in my blog I would like to take a small "commercial" break and bring you this public service announcement. If you are going to bring someone in for an interview and have them drive 25 miles for said interview (50 miles round trip plus tolls), that's really no small thing. If you are going to ask them back for two more interviews that same week (now 150 miles and triple tolls) that's a big thing. If you tell the interviewee that you will have a decision that next week, do not make them email you twice over the next three weeks asking for an update to simply reply with a form email telling them thanks but no thanks. That is not the level of customer service I know for a fact you ask of your employees. If you tried this on one of your clients, you would surely be fired. Remember, what goes around comes around. And now back to our blog...
So here is my dilemma: Do I continue to test the job market waters? Do I have faith that my business will continue to grow and just tough it out? I have been helping my friend two days a week at her antique shop, which I enjoy. I get to play with antiques and it gets me out of the house (and away from the Feline Union that likes to shake me down for kitty treats). It's a nice "part time" job and I'm thankful for it. However at times it makes me yearn for the days where I sat behind a desk and played Corporate Barbie.
At the end of the day, all these variables, all the positives and all the negatives don't point in one direction, which leads me to feel like I'm standing in the middle of the road wondering which way to go. Lacking clear direction is outside my comfort zone (just ask my Garmin). What are your thoughts on my current situation, Dear Reader?
Until Tomorrow - Melissa
Tuesday, July 10, 2012
The Mother of Invention
It has been said that necessity is the mother of invention. To put it another way, difficult situations inspire ingenious solutions. I have found this to be true in my own life. When I first lost my job (catch up here), I didn't know what I was going to do. My first thought was to try to get a new one as soon as possible. Then I had a couple of people say "This might be an opportunity to work on your jewelry full time." When one person says it, okay, it's an idea. When more than one person says it, I find this is Someone's way of telling you what to do.
So I made up some jewelry and I started an Etsy shop. I then had to find ways to market my shop and in marketing my shop I began to build a network of other Etsy shop owners. These women (it's mostly women I have found in the jewelry and accessory realm) are super supportive and are willing to lend a hand to newbies.
As you interact with the new "associates", you start to find out about their lives and you become friends. I found it very interesting that a lot of these women were much like me. They are creative women who have some type of health issue (autoimmune disorders and fibromyalgia, for example) that makes working a normal schedule or outside the house very difficult.
It makes me wonder how many Etsy store owners are in the same position as I? I started to do my jewelry as a hobby, then it morphed into a side business. Now I rely on it as a source of income. Before I got sick, it was nice when someone (typically a friend) would commission a piece of jewelry. I would turn around and reinvest the profit into my business by typically buying a new tool. Now the profits help me pay day-to-day expenses.
Sometimes I can get a little frustrated when my sales are slow. I have friends tell me that it's the economy. I'm sure this is partially true. However, I still see women buying jewelry and accessories at Charming Charlie's, Target, Walmart, etc. I think a lot of women don't think about buying something from a crafter/artisan or they think it might be too expensive. While I do have some more expensive items in my store, most are very wallet friendly.
If you had the option to buy a pair of earrings that were made by hand by a small business owner for $16, or a similar pair at Wal-Mart for $14.99, which would you rather buy? I know what I would like to do.
Dear Reader, you may be asking yourself, where do I find these handmade goodies which you speak of? Well, I will tell you! Just follow the links below.
Handmade Lampwork Beads by Bastille Blue - Etsy Facebook Website
Handmade Children's and Pet Accessories by The Joyful Princess Boutique - Etsy Facebook
Handmade Jewelry by Beadsoul- Etsy Facebook
Sequintatic Bead and Sequin Jewelry by Saturday Sequins - Etsy Facebook Blog
And now for the shameless plug for me:
Handmade Jewelry by Chrysalis Jewelry - Etsy Facebook Website
These women make really great products and I know they would be honored to have your business. Please consider giving them a try!
Until Tomorrow - Melissa
So I made up some jewelry and I started an Etsy shop. I then had to find ways to market my shop and in marketing my shop I began to build a network of other Etsy shop owners. These women (it's mostly women I have found in the jewelry and accessory realm) are super supportive and are willing to lend a hand to newbies.
As you interact with the new "associates", you start to find out about their lives and you become friends. I found it very interesting that a lot of these women were much like me. They are creative women who have some type of health issue (autoimmune disorders and fibromyalgia, for example) that makes working a normal schedule or outside the house very difficult.
It makes me wonder how many Etsy store owners are in the same position as I? I started to do my jewelry as a hobby, then it morphed into a side business. Now I rely on it as a source of income. Before I got sick, it was nice when someone (typically a friend) would commission a piece of jewelry. I would turn around and reinvest the profit into my business by typically buying a new tool. Now the profits help me pay day-to-day expenses.
Sometimes I can get a little frustrated when my sales are slow. I have friends tell me that it's the economy. I'm sure this is partially true. However, I still see women buying jewelry and accessories at Charming Charlie's, Target, Walmart, etc. I think a lot of women don't think about buying something from a crafter/artisan or they think it might be too expensive. While I do have some more expensive items in my store, most are very wallet friendly.
If you had the option to buy a pair of earrings that were made by hand by a small business owner for $16, or a similar pair at Wal-Mart for $14.99, which would you rather buy? I know what I would like to do.
Dear Reader, you may be asking yourself, where do I find these handmade goodies which you speak of? Well, I will tell you! Just follow the links below.
Handmade Lampwork Beads by Bastille Blue - Etsy Facebook Website
Handmade Children's and Pet Accessories by The Joyful Princess Boutique - Etsy Facebook
Handmade Jewelry by Beadsoul- Etsy Facebook
Sequintatic Bead and Sequin Jewelry by Saturday Sequins - Etsy Facebook Blog
And now for the shameless plug for me:
Handmade Jewelry by Chrysalis Jewelry - Etsy Facebook Website
These women make really great products and I know they would be honored to have your business. Please consider giving them a try!
Until Tomorrow - Melissa
Friday, June 8, 2012
Answers
Dear Reader - If you have followed my blog for awhile, you will know I have struggled with a mystery illness for over a year now. In early January, I detailed my mystery illness struggle (Catch up Here). A couple of months ago I reached out to a former coworker who also has an autoimmune disorder to see who her doctor was. She gladly gave me her doctor's name. It then took me another month to put on my "big girl pants" and make an appointment. You may ask why it took so long. Making a doctor's appointment may seem like a very easy thing to do. However, there comes a point where you can no longer deal with the emotional roller coaster of hope (surely this doctor will be able to help) to devastation when they shrug their shoulders and send you to the next specialist.
I went to see the new rheumatologist on May 24. I took with me all the copies of my medical records, organized by the specialist that had ordered each test. It was a considerable stack. My new doctor patiently listened to my tale of woe, then took my records while I changed for an examination. After looking over my records and examining me, she came up with a diagnosis. She said, "You have CREST, it's right here," as she pointed to the tests my hematologist ran last July. She also said that I have fibromyalgia. I was already being treated for the fibromyalgia, with the medications my GP "threw against the wall" last August (after my first rheumatologist told me he didn't have a magic potion for me).
One would think being diagnosed with an autoimmune and fibromyalgia would be a huge blow. This diagnosis felt like a massive weight was lifted off my shoulders. My husband even commented later that day that I looked like the weight of the world had been lifted from me. My new doctor ordered several new lab tests to get baselines. This included a lung function test, as pulmonary hypertension is a concern for people with CREST. The best part of my appointment was having a doctor tell me it was her job to help me manage my illness. Finally a teammate with an MD to her name!
Yesterday I had my two week follow up. We went over test results (including a confirmation on my CREST) and came up with a game plan. I will see her again in four months, unless I need to see her earlier. It was good to find out that my liver and kidneys are functioning normally (kidneys can be a concern as well for people with CREST). It's good to finally have answers.
As blessed as I feel to finally have my answers, I must tell you I also feel rage, mainly at my first rheumatologist. He had the same information presented to him. He said he could do nothing for me. When I begged for his help, I got a smart alec answer, which was highly unprofessional. I wonder what would have happened if I had been given the help I needed at the end of August instead of sarcasm.
I have to believe that everything happens for a reason and that there is a purpose in everything. I do not know at this point what the purpose of this trial is. I hope in time to figure it out.
I do know one thing, Dear Reader: You have to be persistent in your medical care. I have found there are good doctors out there, who will help you, and there are also doctors out there that really shouldn't be practicing. If you run into the latter, don't give up. There is a lot of information out there (on the internet). Do research. Talk to people and see who their doctors are. Dr. House may be a fictional doctor, but doctors with his talents do exist in reality, as well.
Until Tomorrow - Melissa
I went to see the new rheumatologist on May 24. I took with me all the copies of my medical records, organized by the specialist that had ordered each test. It was a considerable stack. My new doctor patiently listened to my tale of woe, then took my records while I changed for an examination. After looking over my records and examining me, she came up with a diagnosis. She said, "You have CREST, it's right here," as she pointed to the tests my hematologist ran last July. She also said that I have fibromyalgia. I was already being treated for the fibromyalgia, with the medications my GP "threw against the wall" last August (after my first rheumatologist told me he didn't have a magic potion for me).
One would think being diagnosed with an autoimmune and fibromyalgia would be a huge blow. This diagnosis felt like a massive weight was lifted off my shoulders. My husband even commented later that day that I looked like the weight of the world had been lifted from me. My new doctor ordered several new lab tests to get baselines. This included a lung function test, as pulmonary hypertension is a concern for people with CREST. The best part of my appointment was having a doctor tell me it was her job to help me manage my illness. Finally a teammate with an MD to her name!
Yesterday I had my two week follow up. We went over test results (including a confirmation on my CREST) and came up with a game plan. I will see her again in four months, unless I need to see her earlier. It was good to find out that my liver and kidneys are functioning normally (kidneys can be a concern as well for people with CREST). It's good to finally have answers.
As blessed as I feel to finally have my answers, I must tell you I also feel rage, mainly at my first rheumatologist. He had the same information presented to him. He said he could do nothing for me. When I begged for his help, I got a smart alec answer, which was highly unprofessional. I wonder what would have happened if I had been given the help I needed at the end of August instead of sarcasm.
I have to believe that everything happens for a reason and that there is a purpose in everything. I do not know at this point what the purpose of this trial is. I hope in time to figure it out.
I do know one thing, Dear Reader: You have to be persistent in your medical care. I have found there are good doctors out there, who will help you, and there are also doctors out there that really shouldn't be practicing. If you run into the latter, don't give up. There is a lot of information out there (on the internet). Do research. Talk to people and see who their doctors are. Dr. House may be a fictional doctor, but doctors with his talents do exist in reality, as well.
Until Tomorrow - Melissa
Friday, May 4, 2012
Take What You Love…And Beat It to Death
My dearest readers, I have a long list of
"typical" blog topics, and this is not one of them. Tonight, as I entertained myself into the wee
hours of the morning (when normal people sleep), I was looking through some
“old” photographs. If you follow my
blog, you may think I am referring to some antique photos. Sadly, that is not the case. I was looking through old photos of my
jewelry. Talk about a wake-up call.
The photos I speak of are about three years old. Let me share some with you:
These were pieces of jewelry that were created out of
love. Pieces that were created out of
passion. You can tell just by looking at
them. As I digitally flipped through
them, I felt like I had been knocked upside the head. What happened? Where did this go wrong?
I first got into making jewelry almost by accident. I purchased some loose stones with the
intention of having a jeweler set one or two of them. As I researched what to do with them, I ran across
an artisan jewelry gallery that also offered lessons. Aha!
Why have a jeweler set the stones when I could learn how to do it
myself? I intended on taking the six
lessons I purchased, make a piece of jewelry or two, and be done with.
My husband had business to attend to in the same area of
town at the same time as my first jewelry lesson, so we carpooled. When he returned to pick me up, his first
comment was “WOW! The smile on your face was worth the price of admission. I haven’t seen you smile like that in a long
time." I was having a lot of
fun. In three short hours I had almost
made my first ring.
Picture of my first ring
What started as six lessons turned into six months. As lessons progressed, I became irritated at
spending precious class time sanding, filing, or some other simple task when I
could be learning. So I bought a few
tools. Anyone who knows me personally
knows I don’t do anything half way. A
few simple small tools turned into
bigger not-so-simple tools. I originally
started work on an old store bought television stand that had been moved out to
the garage a few years earlier.
The original "studio"
Like Tribbles, the tools began to multiply (What? You don’t know what a Tribble is? Get off my blog! Just kidding, educate yourself at http://en.wikipedia.org/wiki/Tribble . And yes, my nerd is showing). The Tribbles, I mean tools, needed more
space. So what does my husband do? He builds me a studio.
The studio that actually looks like an artist's studio
I used to go out to my studio for HOURS and create. I could lose entire weekends out there. Friends noticed my jewelry. They asked if I could make them a piece. I am an American. I am a good capitalist - of course I can make
you jewelry! Enter my business, Chrysalis
Jewelry.
Chrysalis remained a side business until a few months
ago. I became very ill with what is
suspected to be an autoimmune disorder that doctors have yet to conclusively
identify (should you want the blow-by-blow on that, here is a link to my past
blog where I detail my experience to date: http://melissa-randomthoughtsfrommelissa.blogspot.com/2012/01/my-apologies.html
). After I lost my job, I began to focus
on my business full time. It seemed like
a good solution. I could work for
myself, working when I felt well.
However, in order to “succeed”, people had to know I was out there. One quick way to let people know I sell
jewelry was to open an Etsy store (feel free to shop at http://www.etsy.com/shop/chrysalisjewelrytx ). An Etsy store by itself really doesn’t do any
good. One must use as much social media
as one can. So I did.
Somewhere in all of this, I lost focus. I felt I needed to produce. To get a lot of items in my Etsy store so
people could buy them. I think this is
where I went wrong. I am a jewelry
artist. I need to focus on creativity,
not mass production. I need to create
beauty. I need to create wearable art.
It’s so classic; I see that now. Take something you love and beat the
tarnation out of it until it no longer resembles what you started with. Spend so much time doing it, you end up
seeing it as a job, not a privilege.
Dear Reader, I’ve had my wake up call.
I need to refocus and recenter. I
need to let the creative process take its natural course. If people buy it, great. If not, I will know I’ve done my best.
Until tomorrow – Melissa
PS – Should you want to buy a piece or two and support an
artist, here is the address for my Etsy address again: http://www.etsy.com/shop/chrysalisjewelrytx . ;)
Thursday, January 5, 2012
My Apologies
Dear Reader, I must beg your forgiveness. I have not blogged in a very long time. When I started this blog I intended to blog every day. I endeavored to come up with something comical or whimsical to share on a daily basis. At first it was easy. Then it wasn’t so much. I can use the excuse that, as an artisan jeweler, I got overwhelmed with Christmas orders. This is partly true; I was busy filling Christmas orders. I can say that I was concentrating on getting my Etsy store well stocked. Again partly true. Upon much reflection, I realize why I stopped writing.
I think writing requires a bit of honesty on the writer’s part. My blog was happy-go-lucky. It was a nice charade, a nice distraction while I figured out what was going on in my life. So dear reader, in a moment of soul baring I will tell you my story. If you want happy-go-lucky, please stop reading now.
Last March I was at work, which was at a university. We were in the middle of spring break. I was mid-sentence with my student worker when I had to run to the bathroom. I will spare you the gory details. I went home, thinking I had the stomach flu. Oh how I wish that it had been the flu. March 15th (“Beware the Ides of March” they say) was the beginning of my own personal hell.
I didn’t get over “the flu”, and the abdominal pain sharpened and settled into my right side. By the next Tuesday, I was still not feeling well. To my doctor I went. And so the theories began, along with all kinds of tests. When my GP ran out of ideas, I was referred to a gastroenterologist. At this point I also had to medically withdraw from my Master’s program, which was a blow to me. I don’t quit. I stick to it, I grin and bear it, but I don’t quit. But in this case I had no choice. I was still running a fever, and feeling sick, and no one could tell me why. I’ve suffered from kidney stones since I was 16. I know pain, I can handle pain, I get through it (let’s go back to that not quitting thing). There are not words to describe the pain I was in all the time. Pain so bad I couldn’t sleep. I read a LOT of books. What else do you do at 3 AM? The last test my gastroenterologist ran was a scope down my stomach. Turns out I had a hiatal hernia. That would account for the heart burn, but not the fever and abdominal pain. Then my facial drooping and tremors began. My gastroenterologist sent me to see a neurologist. More tests. The only thing this doctor could come up with was my clotting factors were through the roof, my ANA was high, and had a vitamin D deficiency.
I’d been gone from work for a while and as you can imagine, my employer wasn’t happy. So back to work I went. Just getting ready for work killed me. Shortly after I returned to work I had a follow up with my neurologist. During the appointment he had a hard time getting a pulse. Then he listened to my chest and looked up at me said, “I need you to go to the ER right now. You’re in tachycardia.” Across the street to the ER we went (thank goodness my husband was with me). More tests and a few drugs later, I was still in tachycardia and the ER doctor was shrugging his shoulders. No idea why my heart was beating so hard and not responding to pain killers or antianxiety drugs. If I wanted, he could admit me or I could go home. Since you took 16 vials of blood and came up with nothing, I’m going to go home. Thanks for playing. I went to work the next day over my husband’s emphatic protests.
I went back to my gastroenterologist and begged for pain pills. He wrote me a prescription for another antacid. He also referred me to an endocrinologist. I went back to my GP and begged for his help. Due to some family history, he sent me to a hematologist. The endocrinologist was a bust. The hematologist ended up with a 25 page lab report. She confirmed my ANA was high. She performed a lot of other tests that showed I had an autoimmune disease. She also tested for all of the “common” ones. All negative. She did get a positive on something called CREST syndrome. She had no idea what it was. She had to Google it to find out what it was. Long story short, CREST stands for five symptoms: Calcinosis, Raynaud's phenomenon, Esophageal motility disorders, Sclerodactyly, and Telangiectasia. My hematologist sat there and apologized. She had done every test she knew to do. She was at the end of her knowledge. She said it was going to take a very knowledgeable rheumatologist to figure this out. Who did she recommend? She told me a doctor at UTSW. Awesome, a sister university to the one I worked for. For the first time in months I had hope; maybe this guy was the key. At this point in my story we are in mid-July. He had a cancelation and I was able to get right in.
My appointment came. I had to fill out all kinds of family history paperwork. I had stacks of test records. The doctor sat and listened to my complaints. He said he had a couple of theories. Ordered more tests and scheduled a follow up in six weeks. He was a busy and popular doctor. I didn’t want to wait six weeks for answers, but as long as I got answers I could grin and bear it. I had gotten into the habit of having someone at my appointments with me. Someone who could also listen to all the technical jargon. My follow up fell at the end of August. My husband is a school teacher and we didn’t feel comfortable with him taking a day off so early in the school year.
My mother offered to fly down to go to my appointment with me. My follow up appointment came. After going over my test results and telling me what I didn’t have for 20 minutes, he finally concluded there was nothing more he could do for me at that time. I was in shock. I plead with him, begged for help. I was told (and here’s the kicker) “I don’t have a magic potion for you.” I didn’t ask for magic, I asked for help. I cannot tell you the despair I felt in that moment. Five-and-a-half months had elapsed after I first got sick and I was still no closer to an answer (or so I felt).
Since I was going to have to miss work anyway (something I hated to do at that point), I also scheduled an appointment with my GP. I was already on a lot of medications trying to control this or that and one of them required I get a blood test every six weeks to make sure it wasn’t harming my liver. I got to my GP appointment and told him how my rheumatologist appointment went. Bless my GP, he’s a great doctor if you have the flu or the sniffles, but he’s a GP. Sensing my despair, he decided to throw a couple medications “against the wall” if you will and see if they helped. He first put me on a sleeping pill, so I could at least sleep. He also put me on an antidepressant that was known to also help with nerve pain. They may not have been magical potions, but boy did they improve my quality of life.
I cannot tell you how good it felt to one - get a full night’s sleep and two - not be in pain. This helped for a few weeks. However, my tachycardia still wasn’t solved. You know how you feel after you run, or do some kind of hard exercise? When your heart is beating really really fast and you need to catch your breath? Imagine feeling like that, 24 hours a day, 7 days a week. Imagine this going on for months. Any type of physical activity exhausted me. Walking from my car to my office was a daily nightmare. However, my pain was better, so I was going to take what I could get.
I made this work until October. That was when my body said, “That’s it. I’m done.” I couldn’t get out of bed. There was just about nothing that could motivate me to give up lying flat on my back. Hunger and thirst were not motivation enough. My house is not large. The kitchen is about 40 feet from my bedroom. It may as well have been in China. I made one trip to the kitchen a day. That one trip was in the morning to give my diabetic dog her insulin. My husband would get her at night. I would eat when my husband would get home from work and would bring me something. I returned to my GP. I told him how exhausted I was. He took my vitals and said, “Well, with your heart beating as fast as it is, it makes me tired just listening to it.” It was going so fast he actually had to get a finger monitor to get a count. He then put me on a 24 hour halter monitor to check out the rhythm. Not that it did much good. You are supposed to live your normal life while wearing the monitor to get the best picture of what is going on. I couldn’t get out of bed.
My rhythm was normal, just very fast. I was sent to a cardiologist. In case you are keeping track, this is doctor number seven, if you don’t count the ER doctor. I first had the joy of going through tests including a Balke protocol stress test. I wanted to die. Finally I got to see the doctor. Normal rhythm, everything is fine. I asked why it was beating so fast. The doctor had no idea, but come back if I needed to see him again. I think he was late to a golf game or something. He literally did not spend two minutes with me.
Back to the GP I go. He was not a happy camper. He apologized for sending me to that cardiologist. He then put me on a beta blocker to bring my heart rate down. Talk about magic potion! One pill and a good night’s sleep and I felt….I felt like me. The beta blocker prescription was given to me on Halloween. Seven and a half months since I had gotten sick.
The beta blocker didn’t come in time. I lost my job in early November. Who can blame my employer? I went from model employee to an employee who was never there and had wild tales of illness. Who would believe a tale of doctor after doctor blowing you off? I wouldn’t, but I know it to be true; I have experienced it firsthand.
Losing my job was devastating. Anyone who has ever lost a job can tell you how hard it is. For me, it was the last thing I had. Since March, I had given up on my Master’s. I no longer made jewelry, something I LOVED to do. Months went by and my studio went unused. I wasn’t a wife to my husband. Cooking, cleaning, and the care of our home fell completely on my husband’s shoulders. Most of it I simply could not do. I stopped being a sister to my brother who is in college here (the one I use to work for). He has Asperger’s and needs help from time to time. My job was the last thing I was doing (although poorly). It was the last thing I had…or at least it felt that way. Whatever disease I have robbed me of everything.
God bless my husband. He has been a rock through this whole journey. The irony of losing my job when I did was finally having all my symptoms treated. It was also a blow to lose my health insurance. COBRA is about $500 a month. To get on my husband’s was going to be even more.
So now what? I really don’t know. I had a job offer. I was going to take the job. But I’m still not 100%. I have good days and I have days where I’m really tired. I still have nights (even with sleeping drugs) where I can’t sleep. I thinking working a job right now would not be good for me or the employer, and my husband agrees wholeheartedly. So, I do my jewelry. I’ve started to sell it on Etsy. My jewelry business had always been a side thing. Now I’m trying to grow it into a successful small business. It’s a lot of hard work, but the upside is, I can’t fire myself. I can work nights and weekends when I feel like it. I can stay in bed when I don’t.
So, dear reader, why am I telling you this? One, I think confession is good for the soul. It has been very therapeutic for me to write this. I thank you if you have read it this far. But I have ulterior motives for writing this as well. A few nights ago I couldn’t sleep and was surfing the net, looking for information on CREST (the only autoimmune I really have to go on at the moment). While I don’t hold a medical degree, I must say the pieces fit. I ran across a message board for people with CREST. I read it in tears. For the first time, I was reading post after post that could have been written by me. Symptoms I have, not being able to get out of bed, job loss. As heart-breaking as the stories were, I found comfort. One – I had validation that I wasn’t crazy and two – I wasn’t alone. My husband and family can tell me they’re behind me, but they aren’t living it.
My other ulterior motive is I can hope that a doctor or a medical student, or someone else who has CREST can tell me who to see. From what I’ve read, it’s hard to diagnose because it’s not common. For the longest time I’ve wished there was a real Dr. House, someone who can put my puzzle pieces together. Now I just have to hope he or she reads this.
Thank you for reading – I hope to see you tomorrow.
Melissa
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