So, it has been a while since I posted. A lot has gone on, and a lot still to do. We (being my Dr, my psychiatrist, and myself) think that some of my issues are due to a combination of Fibromyalgia and migraines, as well as stress and anxiety. From what little research I have been able to do, this seems fairly common in the fibro community. I have Physical therapy starting next week to try and get my shoulders and neck and upper back strong, Vestibular (balance) therapy the week after that to try to train my body to balance using my inner ear (the way most people do) rather than using and exhausting my eyes (the way my body has decided to do it). I still can't stand outside and watch cars go by, much less go for a walk. My FMLA leave is up, and my employer has been flexible and gracious enough to allow me 3 more weeks of personal leave, but that expires May 1st, and I have serious doubts of me functioning at a level high enough to return to work. I have applied for SSI/Disability, but the hoops and mountains of paperwork are overwhelming, and my gut reaction is to bury my head in the sand and procrastinate on it. Not such a good process, and now I am facing another deadline. Add to that the bills that continue to come in (over $700 AFTER insurance for some testing, just to hear that everything seemed normal), and my stress level continues to rise. I haven't even started the process of long term disability thru Standard. I don't have the patience for that again. Just trying to take a breath and relax and take it day by day, hour by hour, minute by minute.
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Tuesday, April 14, 2015
Thursday, March 19, 2015
Normal
*There could be use of swear words in this post.
I am so completely tired of the word "Normal". Test results-Normal. Bloodwork-Normal. Thyroid-Normal. Inner ear-Normal. Everything is fucking Normal. But it is not. It is sooooo NOT normal. Not MY normal. Not the normal I have lived with for most of my life, save the past 9 months. Not the normal I want to go back to. Why can't at least one little test be NOT NORMAL?!? I just want someone to tell me what is wrong with me. Even if they can't fix it, just find it dammit! I just want to know what is wrong, so I can find my normal again.
I am tired of having to explain my symptoms over and over to another specialist. I am tired of fighting with disability insurance to get some income coming into the house so we can pay the bills until they find out what is NOT NORMAL.
I want to go back to work, live my normal life with my crazy kids and my amazing husband.
Will someone please find out what the hell is so wrong with me that makes all the results "normal"??
It is so fucking exhausting.
Frustrating. Annoying. Irritating. Depressing. Neverending. Disheartening.
Donate to Megan's Medical Fund
I am so completely tired of the word "Normal". Test results-Normal. Bloodwork-Normal. Thyroid-Normal. Inner ear-Normal. Everything is fucking Normal. But it is not. It is sooooo NOT normal. Not MY normal. Not the normal I have lived with for most of my life, save the past 9 months. Not the normal I want to go back to. Why can't at least one little test be NOT NORMAL?!? I just want someone to tell me what is wrong with me. Even if they can't fix it, just find it dammit! I just want to know what is wrong, so I can find my normal again.
I am tired of having to explain my symptoms over and over to another specialist. I am tired of fighting with disability insurance to get some income coming into the house so we can pay the bills until they find out what is NOT NORMAL.
I want to go back to work, live my normal life with my crazy kids and my amazing husband.
Will someone please find out what the hell is so wrong with me that makes all the results "normal"??
It is so fucking exhausting.
Frustrating. Annoying. Irritating. Depressing. Neverending. Disheartening.
Donate to Megan's Medical Fund
Monday, March 9, 2015
The trip to the store
I try to not go stir crazy, but the gorgeous weather is making it more and more difficult. Any opportunity I have to get out of the house, I take. Grocery store? Take me with! Library? Sure! Running errands with my mom means sitting in the car for most of the time, but it gets me out of the house. People may think I have all this free time, but when I am stuck at home, forced to run my life and freedom around everyone else's schedule, it doesn't mean much. There is only so much cleaning I can do, especially when I get random dizzy spells in the middle of it. Just cleaning the bathtub takes all day. Looking for workouts I can do sitting down to combat some of this rapid weight gain.
John has been a saint through all this. We even try to enjoy our weekly grocery shopping trip. This last weekend trip was rather embarrassing for me. See, when we do our big weekly shop, it is too much for me to be able to focus on shopping and not feel lightheaded, so I have resigned myself to using one of the electric shopping carts. It is bad enough to have to use one, so I was happy to find one that didn't have the annoying back up horn. You know the one. The beeping noise that might as well say "Watch out! Wide load coming through!!!" So I thought, "Yeah, no additional embarrassment today, we can do this!". As we were going though the store, stopping to get yogurt, some older lady (and I use that term loosely) decided to judge me. Not only in her head, but to share with her world a picture of me in the cart. She didn't know how to take pictures quietly. I saw the camera pointed towards me, held "that" way. I even heard the click. After that, I just wanted to finish up and get out of the store. It didn't make me mad, it made me irritated. Who was she to judge my abilities? Just because I didn't have a cast on, or some other obvious issue, doesn't mean I didn't need to use it.
I try not to give it too much headspace though. They are there for those who need them. I needed it. End of story. Some stranger in a store doesn't get to decide what is best for me.
Donate to Megan's Medical Fund
John has been a saint through all this. We even try to enjoy our weekly grocery shopping trip. This last weekend trip was rather embarrassing for me. See, when we do our big weekly shop, it is too much for me to be able to focus on shopping and not feel lightheaded, so I have resigned myself to using one of the electric shopping carts. It is bad enough to have to use one, so I was happy to find one that didn't have the annoying back up horn. You know the one. The beeping noise that might as well say "Watch out! Wide load coming through!!!" So I thought, "Yeah, no additional embarrassment today, we can do this!". As we were going though the store, stopping to get yogurt, some older lady (and I use that term loosely) decided to judge me. Not only in her head, but to share with her world a picture of me in the cart. She didn't know how to take pictures quietly. I saw the camera pointed towards me, held "that" way. I even heard the click. After that, I just wanted to finish up and get out of the store. It didn't make me mad, it made me irritated. Who was she to judge my abilities? Just because I didn't have a cast on, or some other obvious issue, doesn't mean I didn't need to use it.
I try not to give it too much headspace though. They are there for those who need them. I needed it. End of story. Some stranger in a store doesn't get to decide what is best for me.
Donate to Megan's Medical Fund
Tuesday, March 3, 2015
Frustration
Feeling frustrated today. Trying to get all the right information from all the right doctors sent to Standard so they can process my claim and I can try to get some money to pay bills. It is a frustrating process. I guess I should be grateful that I have the disability insurance available to me, even if it means jumping through hoops every day and promising the blood of my first born. I want to be well again. I want to drive. Being stuck at home and relying on others is driving me batty. Frustrated that I can't even do something as simple as sit in the middle of a restaurant without feeling lightheaded. Patience is not my best virtue. I am frustrated that once again, I seem to be in a holding pattern, with no discernible end in sight.
Megan's Medical Fund
Megan's Medical Fund
Monday, March 2, 2015
Gratitude
Today was a good day, the first I have had in over a week. I got the boy off to school, showered and got ready for the day without feeling too lightheaded. I was able to take care of some business that needed my attention and run a load of laundry.
For that I am grateful.
I was able to water the flowers out front. I was able to enjoy the sunlight streaming through the windows. I was able to help my son with his homework.
For that I am grateful.
From the generosity of friends, family, and strangers, I was able to withdraw funds and prepare to pay bills.
For that, I am so grateful.
On the recommendation of my psychiatrist (one of my many specialists), I watched a movie on Netflix. The Secret. It really made me think and be grateful for what I have. It is definitely a movie I will have to watch again and again, to fully understand the theory behind it.
On the good days, it is easy to be grateful, to accept life. It is on the bad days that I have to remember to be grateful and accepting.
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For that I am grateful.
I was able to water the flowers out front. I was able to enjoy the sunlight streaming through the windows. I was able to help my son with his homework.
For that I am grateful.
From the generosity of friends, family, and strangers, I was able to withdraw funds and prepare to pay bills.
For that, I am so grateful.
On the recommendation of my psychiatrist (one of my many specialists), I watched a movie on Netflix. The Secret. It really made me think and be grateful for what I have. It is definitely a movie I will have to watch again and again, to fully understand the theory behind it.
On the good days, it is easy to be grateful, to accept life. It is on the bad days that I have to remember to be grateful and accepting.
Donate to Megan's Medical Fund
Saturday, February 28, 2015
Here we go...
Round and round I go, where I stop, nobody knows.
Seems fitting, doesn't it?
The world goes on around me, making me dizzy, lightheaded, tired. No one knows why, or how. No one knows how to make it stop.
I decided to start this blog as a way to get out my feelings, the good, the bad, and the ugly. I will try to post regularly my thoughts and feelings on life as I continue on this crazy journey.
A bit about me and the reason I started this-
For the past 3 years, I have been dealing with an unknown medical condition. I have episodes of lightheadedness, where the world feels foggy, spacially unsteady, and disconnected from me. I get headaches that make me cry. I can't walk outside very far without feeling like I am going to fall. I have a hard time focusing on tasks. I cannot drive. I cannot go out in public alone without fear of having another episode. I am to the point that a wheelchair may be needed just to go shopping. I am unable to work due to these symptoms. I have been to countless Dr.s, specialists, therapies; had scans and blood work done, over and over again. The symptoms come and go.
Both my mom and my husband, my rock, my amazing support, work full time but still try to take time off to get me to appointments. When we got married, the episodes had stopped. We thought for good. We weren't so lucky. They returned, worse than before. We still don't have a diagnosis.
We know what I don't have, thank God. We know that whatever is going on will not kill me.
It has, however, taken away a part of my life. I want to dance again. I want to take my sons out for ice cream after school. Grocery shop by myself. Drive to the beach. Work my full time job.
My husband deserves a well wife, my children deserve a well mother. So we search. And we fight. And we pray.
Meanwhile, the bills just keep coming. Ambulance trips, ER visits, scans, bloodwork, Dr appointments, prescriptions for things it might be, supplements for things to attempt to help the symptoms. It all adds up. And up. And up. And we can't pay it. With his paychecks and my short term disability insurance, we are barely keeping our heads above water with daily expenses. So here I am. Swallowing my pride and asking for a bit of help.
Thank you. Below is the link to my Go Fund Me page if you feel so inclined.
Megan's Medical Fund-GoFundMe
Seems fitting, doesn't it?
The world goes on around me, making me dizzy, lightheaded, tired. No one knows why, or how. No one knows how to make it stop.
I decided to start this blog as a way to get out my feelings, the good, the bad, and the ugly. I will try to post regularly my thoughts and feelings on life as I continue on this crazy journey.
A bit about me and the reason I started this-
For the past 3 years, I have been dealing with an unknown medical condition. I have episodes of lightheadedness, where the world feels foggy, spacially unsteady, and disconnected from me. I get headaches that make me cry. I can't walk outside very far without feeling like I am going to fall. I have a hard time focusing on tasks. I cannot drive. I cannot go out in public alone without fear of having another episode. I am to the point that a wheelchair may be needed just to go shopping. I am unable to work due to these symptoms. I have been to countless Dr.s, specialists, therapies; had scans and blood work done, over and over again. The symptoms come and go.
Both my mom and my husband, my rock, my amazing support, work full time but still try to take time off to get me to appointments. When we got married, the episodes had stopped. We thought for good. We weren't so lucky. They returned, worse than before. We still don't have a diagnosis.
We know what I don't have, thank God. We know that whatever is going on will not kill me.
It has, however, taken away a part of my life. I want to dance again. I want to take my sons out for ice cream after school. Grocery shop by myself. Drive to the beach. Work my full time job.
My husband deserves a well wife, my children deserve a well mother. So we search. And we fight. And we pray.
Meanwhile, the bills just keep coming. Ambulance trips, ER visits, scans, bloodwork, Dr appointments, prescriptions for things it might be, supplements for things to attempt to help the symptoms. It all adds up. And up. And up. And we can't pay it. With his paychecks and my short term disability insurance, we are barely keeping our heads above water with daily expenses. So here I am. Swallowing my pride and asking for a bit of help.
Thank you. Below is the link to my Go Fund Me page if you feel so inclined.
Megan's Medical Fund-GoFundMe
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