Wednesday, November 16, 2011
Flare squared
This is the third day of a particulary bad flare and I'm finding it hard to cope and hold on to hope. Last night I was having the worst Thunderclap headache attacks (kindof like clusters but usually are singular) and today I was/am afraid to move too much incase they come back.
I just got up to make an omelette and now I'm exhausted again. I don't know how I can survive many more days like this. At least when I lived with other people , I'd occasionally see another person. I don't know where I'm going with this, I just find it's sometimes good to get things out into the world, sometimes it makes things better to write them out.
How do you deal with a flare when you are stuck in bed with way too much and fatigue?
I guess one thing that is good is that I have a lot of time to pray.
Soli Deo Gloria
REformed girlflares
Sunday, October 9, 2011
RIP Alexa Simmons, real friend.
I have been blindsided by the death of a very good friend. Now some might not consider Alexa to be my "real" friend as I knew her only on the Internet but I feel her loss just as much as if she lived down the street from me. She was an amazing light in this world, she was so very positive even when her situation seemed impossibly difficult. Alexei had a rare illness called Ehlers-Danlos syndrome. There needs to be more research into EDS so that beautiful, wonderful, joyful, sarcastic, love to laugh girls that are only aged 22 don't die. PERIOD!
Alexa Simmons you will be missed by many many many friends and family members who will keep a little piece of you in their hearts for the rest of their lives, allowing you to live on through each of us since you were taken so young.
God must have needed you, but it's hard to accept that and not ask why.
Soli Deo Gloria
reformed girl
Alexa Simmons you will be missed by many many many friends and family members who will keep a little piece of you in their hearts for the rest of their lives, allowing you to live on through each of us since you were taken so young.
God must have needed you, but it's hard to accept that and not ask why.
Soli Deo Gloria
reformed girl
Monday, October 3, 2011
Modest Monday
I thought on this modest Monday, as I'm trying to get back into the swing of blogging,that I would explain to you why I choose to wear modest clothes. Why I choose modesty.
I feel better when I'm covered. End of statement. when I see people having to pull up shirts that are riding low or pants that are riding low for that matter, I feel comfortable in what I wear. Having sensory issues means that I wear a lot of dresses, skirts, jumpers which make me feel more feminine but which mostly I wear because I hate pants.
A second good reason why I choose to wear modest clothes is because I believe it's my responsibility to my brothers in Christ that I not tempt them into lustful thoughts. I don't claim to be any great beauty! I am definitely not! But I feel like it's my duty to protect the minds and hearts of my brothers and hope that they would do the same for me.
I feel good when I'm covered. You can still wear pretty clothes and have pretty things and be modest. Putting a tank top under a low cut shirt or making sure that your undergarments don't show are little things that I choose to do to make modern clothes more modest.
I'm sure that there are other reasons, which I will talk live on another modest Monday! Thanks for letting me back into the blogging world and I hope to continue blogging.
Soli Deo Gloria
REformed Girl
I feel better when I'm covered. End of statement. when I see people having to pull up shirts that are riding low or pants that are riding low for that matter, I feel comfortable in what I wear. Having sensory issues means that I wear a lot of dresses, skirts, jumpers which make me feel more feminine but which mostly I wear because I hate pants.
A second good reason why I choose to wear modest clothes is because I believe it's my responsibility to my brothers in Christ that I not tempt them into lustful thoughts. I don't claim to be any great beauty! I am definitely not! But I feel like it's my duty to protect the minds and hearts of my brothers and hope that they would do the same for me.
I feel good when I'm covered. You can still wear pretty clothes and have pretty things and be modest. Putting a tank top under a low cut shirt or making sure that your undergarments don't show are little things that I choose to do to make modern clothes more modest.
I'm sure that there are other reasons, which I will talk live on another modest Monday! Thanks for letting me back into the blogging world and I hope to continue blogging.
Soli Deo Gloria
REformed Girl
moving, moving , moving
I've been moving around a lot. I don't mean physically, bodily moving around. I mean physically 1000 boxes, rental vans moving around.
at the beginning of May, I made the hard decisions that I needed to move and that I needed to move away from the town I had been living in for the past 10 years because for me, living there and not being able to work, was starting to make me really feel like I didn't have any worth. Plus my best friend at the time was mad at me, I'm not really sure why still but I think it worked out for the best. God was working in my life.
I found a new place, it seemed to be perfect, it was a basement apartment that was very low ceiling and it was set up perfectly for a little person like myself. The landlord even put the shelves on top of each other instead of overt top of the counter so that I could reach all the cupboard space. It was within walking distance of the grocery store, the pharmacy, my new dentist and my new church. I thought things were perfect. Well I had been looking for this place I had been trying to get into my Aunt's building, but there had been no vacancies. Unfortunately, I'm sure you picked it up by all the past tense, the apartment wasn't as perfect as I thought it was. There was flooding, one of the two postmarks sized windows had to be covered at all times so I had very little light, and there were several types of mold and a white crystalline from fungus in the closet. The first time it flooded was because I had moved the plywood off of the second window because I did not know why it was there. The landlord tried to tell me he did not know that there was going to be a flooding issue and that it hadn't flooded in the spring but I find that hard to believe because how else would he'd known to have blocked the window. He promised to fix it, but nothing is getting done.
At a doctor's appointment, I had mentioned that there was mold in my environment, and my doctor told me I should not live in an environment like that with my compromised immune system and the fact that I only have one and a half long capacity instead of the average two. So I called my landlord and gave my notice. It was very hard for me to do that because I don't like feeling like I'm letting people down.
I was away for two weeks and when I came back the apartment had flooded again even with the board being left on the window! My mattress is ruined but hopefully the landlord is taken care of that! He promised that he would now I'm just having to be patient and wait for him to get back to me.
The good news in all this kerfuffle is that I put in an application to my Aunt's buildingand got a beautiful bachelor's apartment on the ninth floor. I guess you can say I'm on cloud nine. If I weren't so exhausted! I am slowly unpacking and hope to have my first visitors this weekend as it is Canadian Thanksgiving.
In God's timing, things worked out perfectly, I believe he gave me this experience so that I can trust in him more deeply that He will take care of me and all my needs and I pray that I can be a blessing to someone in this building.
so this Thanksgiving I'm thankful to be in the house that doesn't leak! And I think my cats are too!
Happy Thanksgiving! What are you thankful for?
Soli Deo Gloria
REformed Girl
at the beginning of May, I made the hard decisions that I needed to move and that I needed to move away from the town I had been living in for the past 10 years because for me, living there and not being able to work, was starting to make me really feel like I didn't have any worth. Plus my best friend at the time was mad at me, I'm not really sure why still but I think it worked out for the best. God was working in my life.
I found a new place, it seemed to be perfect, it was a basement apartment that was very low ceiling and it was set up perfectly for a little person like myself. The landlord even put the shelves on top of each other instead of overt top of the counter so that I could reach all the cupboard space. It was within walking distance of the grocery store, the pharmacy, my new dentist and my new church. I thought things were perfect. Well I had been looking for this place I had been trying to get into my Aunt's building, but there had been no vacancies. Unfortunately, I'm sure you picked it up by all the past tense, the apartment wasn't as perfect as I thought it was. There was flooding, one of the two postmarks sized windows had to be covered at all times so I had very little light, and there were several types of mold and a white crystalline from fungus in the closet. The first time it flooded was because I had moved the plywood off of the second window because I did not know why it was there. The landlord tried to tell me he did not know that there was going to be a flooding issue and that it hadn't flooded in the spring but I find that hard to believe because how else would he'd known to have blocked the window. He promised to fix it, but nothing is getting done.
At a doctor's appointment, I had mentioned that there was mold in my environment, and my doctor told me I should not live in an environment like that with my compromised immune system and the fact that I only have one and a half long capacity instead of the average two. So I called my landlord and gave my notice. It was very hard for me to do that because I don't like feeling like I'm letting people down.
I was away for two weeks and when I came back the apartment had flooded again even with the board being left on the window! My mattress is ruined but hopefully the landlord is taken care of that! He promised that he would now I'm just having to be patient and wait for him to get back to me.
The good news in all this kerfuffle is that I put in an application to my Aunt's buildingand got a beautiful bachelor's apartment on the ninth floor. I guess you can say I'm on cloud nine. If I weren't so exhausted! I am slowly unpacking and hope to have my first visitors this weekend as it is Canadian Thanksgiving.
In God's timing, things worked out perfectly, I believe he gave me this experience so that I can trust in him more deeply that He will take care of me and all my needs and I pray that I can be a blessing to someone in this building.
so this Thanksgiving I'm thankful to be in the house that doesn't leak! And I think my cats are too!
Happy Thanksgiving! What are you thankful for?
Soli Deo Gloria
REformed Girl
freedom
I've recently been on a journey. On a journey with a good friend of mine, a person I call my sister whom I've known for a very long time. I have been helping her with an exciting journey although I times it has been scary, seemed like it was never going to end, tence, and frightening.
My friend has an illness named Crohn's disease, Crohn's is an autoimmune condition where your body essentially attacks your intestines/colon causing embarrassing symptoms like excess gas and diarrhea. My friend was essentially trapped in her bathroom, and she couldn't go out, couldn't do any errands or things that most people take for granted that you're going to be able to do. Having a chronic illness myself I can understand how she feels but I feel I've had more freedom than she has had.
But that has all changed.
I recently went and spent two weeks in hospital with my friend, slept at her side. It was a strange occurrence to be in the hospital but not IN the hospital. I was glad I could offer comfort, distraction and entertainment in equal portions. I was stalwartly waiting with herfor her to be free.
My friend had surgery on September 17 aafter every other option to treat the Crohn's had failed. During the surgery I helped take to her stuffed animal named Ginger and cried quite a few tears and prayed quite a few prayers that she would come through the surgery and be offered the freedom that we hoped would happen from this surgery.
When you're chronically ill, sometimes it's fun to name your mobility aids, wheelchair, catheter, ileostomy or colostomy bag.
Meet Rebecca, she is my friend's new partner in crime, partner in freedom. Rebecca and her purse ( my friend"s ileostomy) are beginning to offer my friend freedom.
It's hard to put into words how this freedom affects me, how it affects my heart, how it affects how we'll be able to be together, and all the things it affects in her life. Rebecca brought hope. Rebecca brought freedom. Rebecca brought a new sense of one's self of one's body and ownership of that body.
I am on a journey. We are on a journey. Hopefully it's a long one filled with hope and freedom from bondage. My heart is light when I think of how much this is changing my best friend's life and how brave she is, and how wonderful she is, and how strong she is. She is my inspiration, my partner in crime, the person who knows me better than I know myself, my worst enemy *smiles* and my best ally.
I love U. sissy, thank you for letting me be a part of your freedom and thank you for letting me write about it here to share your freedom with others.
Soli Deo Gloria
REformed girl
My friend has an illness named Crohn's disease, Crohn's is an autoimmune condition where your body essentially attacks your intestines/colon causing embarrassing symptoms like excess gas and diarrhea. My friend was essentially trapped in her bathroom, and she couldn't go out, couldn't do any errands or things that most people take for granted that you're going to be able to do. Having a chronic illness myself I can understand how she feels but I feel I've had more freedom than she has had.
But that has all changed.
I recently went and spent two weeks in hospital with my friend, slept at her side. It was a strange occurrence to be in the hospital but not IN the hospital. I was glad I could offer comfort, distraction and entertainment in equal portions. I was stalwartly waiting with herfor her to be free.
My friend had surgery on September 17 aafter every other option to treat the Crohn's had failed. During the surgery I helped take to her stuffed animal named Ginger and cried quite a few tears and prayed quite a few prayers that she would come through the surgery and be offered the freedom that we hoped would happen from this surgery.
When you're chronically ill, sometimes it's fun to name your mobility aids, wheelchair, catheter, ileostomy or colostomy bag.
Meet Rebecca, she is my friend's new partner in crime, partner in freedom. Rebecca and her purse ( my friend"s ileostomy) are beginning to offer my friend freedom.
It's hard to put into words how this freedom affects me, how it affects my heart, how it affects how we'll be able to be together, and all the things it affects in her life. Rebecca brought hope. Rebecca brought freedom. Rebecca brought a new sense of one's self of one's body and ownership of that body.
I am on a journey. We are on a journey. Hopefully it's a long one filled with hope and freedom from bondage. My heart is light when I think of how much this is changing my best friend's life and how brave she is, and how wonderful she is, and how strong she is. She is my inspiration, my partner in crime, the person who knows me better than I know myself, my worst enemy *smiles* and my best ally.
I love U. sissy, thank you for letting me be a part of your freedom and thank you for letting me write about it here to share your freedom with others.
Soli Deo Gloria
REformed girl
Wednesday, April 13, 2011
'nuff said
Hello Friends!
I nhave been away on holiday, visiting friends, its been very busy but I hope to be able to post more details in the coming week. I just felt like I should share this verse for some reason and I sincerely hope that this verse will be soothing balm to the hurting heart of a person with chronic or dabilitating illness. We have all been there. Reach out! You aren't alone. We're not alone.
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7 so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. 8 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, 9 obtaining the outcome of your faith, the salvation of your souls. 1Peter 1:6-9 ESV STUDY BIBLE.
'nuff said.
In Christ's love,
REformed girl
I nhave been away on holiday, visiting friends, its been very busy but I hope to be able to post more details in the coming week. I just felt like I should share this verse for some reason and I sincerely hope that this verse will be soothing balm to the hurting heart of a person with chronic or dabilitating illness. We have all been there. Reach out! You aren't alone. We're not alone.
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7 so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. 8 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, 9 obtaining the outcome of your faith, the salvation of your souls. 1Peter 1:6-9 ESV STUDY BIBLE.
'nuff said.
In Christ's love,
REformed girl
Monday, April 4, 2011
Fibro...a pain in the...EVERYWHERE!
FIBROMYALGIA
Fog
Irritable bowel syndrome
Balance
Restlessness
Oppressive
Muscle spasms
Yawning
Agitation
Lack of appetite
Grieving
Incessant pain
Anxiety
Sincere
Understanding
Resourceful
Valiant
Inspirational
Versatile
Outstanding
Remarkable
For all the fierce fibro fighters!
Soli Deo Gloria
REformed Girl
Fog
Irritable bowel syndrome
Balance
Restlessness
Oppressive
Muscle spasms
Yawning
Agitation
Lack of appetite
Grieving
Incessant pain
Anxiety
Sincere
Understanding
Resourceful
Valiant
Inspirational
Versatile
Outstanding
Remarkable
For all the fierce fibro fighters!
Soli Deo Gloria
REformed Girl
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