Tuesday, May 31, 2011
Far Above Rubies: Domestically Divine Homemaking Link-Up and Giveawa...
Far Above Rubies: Domestically Divine Homemaking Link-Up and Giveawa...: "I want to change things up a bit this week. I'd like to give 10 select ladies 1 free download of Sarah Mae's new ebook, 31 Days to Clean; Ha..."
Monday, April 25, 2011
My fibro is not like yours.
It seems that even the fibro community does it. Of course, society does it. Our families do it. We question fibro. Statements I have heard (from fellow sufferers):
1. If you do not have x symptom, then it isn't really fibro.
2. If you really had fibro you could/could not work.
3. What do you mean you do not work? I do.
4. That is crazy. If you had fibro you would not be able to do (insert anything)
5. That med does not work for fibro. You must not really have fibro.
6. If you really had fibro you would love/hate massages.
7. Chiropractic is helpful/hell.
8. Pain killers work/do not work.
9. I was cured by x. You don't want to get well or you would try it.
and at #10: I had fibro once. Once.
Other bloggers have stated similar encounters and are as frustrated as I am at times. What makes this so hard is we cannot seem to cohesively rally together. Can you imagine what would happen if we could get the momentum that the Susan Komen for Breast Cancer movement has? It would be astounding.
Now, I am not trying to bash anyone. I am just making an observation. However, I believe that we as a group must, and I mean MUST, band together or we will never be truly heard. We will be slaves to the newest fad treatment and worse, out and out dangerous scams.
Let's try and bridge the gap this May 12 and truly make a difference. I am sending a press release to my local paper and trying to develop a local support group. What can you do?
1. If you do not have x symptom, then it isn't really fibro.
2. If you really had fibro you could/could not work.
3. What do you mean you do not work? I do.
4. That is crazy. If you had fibro you would not be able to do (insert anything)
5. That med does not work for fibro. You must not really have fibro.
6. If you really had fibro you would love/hate massages.
7. Chiropractic is helpful/hell.
8. Pain killers work/do not work.
9. I was cured by x. You don't want to get well or you would try it.
and at #10: I had fibro once. Once.
Other bloggers have stated similar encounters and are as frustrated as I am at times. What makes this so hard is we cannot seem to cohesively rally together. Can you imagine what would happen if we could get the momentum that the Susan Komen for Breast Cancer movement has? It would be astounding.
Now, I am not trying to bash anyone. I am just making an observation. However, I believe that we as a group must, and I mean MUST, band together or we will never be truly heard. We will be slaves to the newest fad treatment and worse, out and out dangerous scams.
Let's try and bridge the gap this May 12 and truly make a difference. I am sending a press release to my local paper and trying to develop a local support group. What can you do?
Sunday, April 10, 2011
I am back!
After what seems like a year, I am able to blog again. I am sorry for the silence but I had some things to do and take care of, most of all the sale of the family farm.
I was out there today taking pictures. Pictures of the family farm, in the family since 1888. My father was born there and died there. I grew up there but never really appreciated it, until now.
As I was taking the shots, the wind blew harder and harder. The swirls of motion seemed to whisper "remember". The tears started as I went down memory lane. Back to the first time I rode my new horse, my new puppy, my first date, my now to be nearly last walk around the property. Crows cawed in the background, turkeys gobbled in the distance and the spring peepers sang away. It is definitely a magical property with rolling hills, a spring fed pond and numerous creeks. I remember my grandmother's feather bed and the soda she saved especially for me. Thoughts of her Avon Bird of Paradise cologne drift through my brain so strong that I swear that I can smell it. I can hear my brother's laughing and my dad yelling at us to stop torturing each other! Yeah, like that ever happened. I see rows of golden wheat, corn and soybeans. Stacks of hay bales fill the barn and the sweat rolls down the nape of my farmer tanned dad's neck. Peaches are held to overflowing in baskets well worn by years of use. The memories keep drifting in and out of my mind's eye.
Suddenly I am aware of my husband coming up behind me. He notices the tears and puts his arms around me. We stand in the warmth of the sun, silently holding each other. Suddenly I hear a horn beep and my mom's voice yelling at us to come in for supper. I turn but no one is there. I turn to Jon and we walk quietly to our car and drive away.
I may have left the farm, but the memories came with me.
I was out there today taking pictures. Pictures of the family farm, in the family since 1888. My father was born there and died there. I grew up there but never really appreciated it, until now.
As I was taking the shots, the wind blew harder and harder. The swirls of motion seemed to whisper "remember". The tears started as I went down memory lane. Back to the first time I rode my new horse, my new puppy, my first date, my now to be nearly last walk around the property. Crows cawed in the background, turkeys gobbled in the distance and the spring peepers sang away. It is definitely a magical property with rolling hills, a spring fed pond and numerous creeks. I remember my grandmother's feather bed and the soda she saved especially for me. Thoughts of her Avon Bird of Paradise cologne drift through my brain so strong that I swear that I can smell it. I can hear my brother's laughing and my dad yelling at us to stop torturing each other! Yeah, like that ever happened. I see rows of golden wheat, corn and soybeans. Stacks of hay bales fill the barn and the sweat rolls down the nape of my farmer tanned dad's neck. Peaches are held to overflowing in baskets well worn by years of use. The memories keep drifting in and out of my mind's eye.
Suddenly I am aware of my husband coming up behind me. He notices the tears and puts his arms around me. We stand in the warmth of the sun, silently holding each other. Suddenly I hear a horn beep and my mom's voice yelling at us to come in for supper. I turn but no one is there. I turn to Jon and we walk quietly to our car and drive away.
I may have left the farm, but the memories came with me.
Thursday, March 10, 2011
Sorry for the silence!
I am sorry I have not posted for so long. There have been so many things going on in my life right now.
That being said, I saw my doctor on Monday for a followup to the ER visit. He listened and stated he felt that I am having migraines. I researched migraines on the internet and they can make you faint (syncope). Lucky me.
Migraines are more complicated than I had ever thought. There are different kinds of migraines depending on the presence of an aura or lack thereof. Also, some migraines are located in different areas of the head. One distinguishing characteristic appears to be the level of pain. A migraine is described as having such a level of pain as the person is unable to continue with activities. There appeared to be a number of medications that are available. Some are preventative type meds while others are taken after the migraine has started. Attacks can last from 4-72 hours. Symptoms can include the following: sensitivity to noise and light, pain that restricts movement and activity, nausea and/or vomiting. There are other symptoms. Triggers can include: food (chocolate and nuts) temperature, change of weather, stress etc.
It was recommended to me that I see a neurologist (who cannot get me in until next month!). It was explained to me that with so many different types of medications it is important to determine the class of migraine.
That is my story for now, the quest for headache relief. Please!
That being said, I saw my doctor on Monday for a followup to the ER visit. He listened and stated he felt that I am having migraines. I researched migraines on the internet and they can make you faint (syncope). Lucky me.
Migraines are more complicated than I had ever thought. There are different kinds of migraines depending on the presence of an aura or lack thereof. Also, some migraines are located in different areas of the head. One distinguishing characteristic appears to be the level of pain. A migraine is described as having such a level of pain as the person is unable to continue with activities. There appeared to be a number of medications that are available. Some are preventative type meds while others are taken after the migraine has started. Attacks can last from 4-72 hours. Symptoms can include the following: sensitivity to noise and light, pain that restricts movement and activity, nausea and/or vomiting. There are other symptoms. Triggers can include: food (chocolate and nuts) temperature, change of weather, stress etc.
It was recommended to me that I see a neurologist (who cannot get me in until next month!). It was explained to me that with so many different types of medications it is important to determine the class of migraine.
That is my story for now, the quest for headache relief. Please!
Saturday, February 26, 2011
Hospital Stay :o(
I suppose the title is a dead giveaway to say the least. I did land in the hospital on Thursday night, my husband's birthday. It all started like this . . .
I fainted. Four times. Out like a light. I could hear my husband's voice but could not respond. After the fourth floor hit my husband insisted on taking me to the local emergency room . . .
We arrived after 20 minutes of driving in near zero visibility snow. I was ushered into a room quickly and hooked up to an IV. Now the IV was a problem for both nurses and to say I nearly had a blackout from the needle being put in and out, yikes!
In the next room was our own personal episode of COPS. Four policemen were guarding a drunk young man who was being very abusive. I tried to relax between yells of "I didn't do nothin'" and "Get off me pigs". Lovely . . .
I was admitted. I was taken to a cold, uninviting room. I was introduced to a few people then told to try and sleep. That would have been okay except across from my room was a patient that was having a definite problem. Groaning and yelling came wafting through the air reminding me of Sloth from the Goonies. . .
After a few hours of bad sleep I was wisked off to testing. CT scan, Echocardiogram, chest xray and ultrasound of my heart and carotid arteries. I was still very cold . . .
The food was terrible. I had to ring to go to the bathroom (I did understand this as a safety measure). After all that the tests came back negative (yay). . .
With all of this I asked myself, why couldn't I go home and do any other tests on an outpatient basis? I asked for the nurse and he paged the doctor who came to see me. I convinced him, as a medical professional (retired, medically) myself that I could monitor my status, my husband would be home and I could do anything else outpatient. He was initially reluctant but finally said yes. . .
I came home and felt fine. This is Saturday and I still feel fine. I have reasoned that since all my tests were negative something else must have happened. Here are the facts: I had not eaten in a long time, it was 1:30am, I had not consumed adequate liquids that day, there was an adrenaline rush from seeing the opening of the musical (my husband was the pit conductor) and I tend to be lightheaded easily due to medications. I believe it was this combination of factors that lead to my fainting. . . .
I am going to follow up with the doctor, I did buy a blood pressure cuff and I have consciously tried to drink more water today. . .
I did come away from all of this with one thought: I am going to take a little bit more time for myself. I do not want to go back to that room again, ever!
I fainted. Four times. Out like a light. I could hear my husband's voice but could not respond. After the fourth floor hit my husband insisted on taking me to the local emergency room . . .
We arrived after 20 minutes of driving in near zero visibility snow. I was ushered into a room quickly and hooked up to an IV. Now the IV was a problem for both nurses and to say I nearly had a blackout from the needle being put in and out, yikes!
In the next room was our own personal episode of COPS. Four policemen were guarding a drunk young man who was being very abusive. I tried to relax between yells of "I didn't do nothin'" and "Get off me pigs". Lovely . . .
I was admitted. I was taken to a cold, uninviting room. I was introduced to a few people then told to try and sleep. That would have been okay except across from my room was a patient that was having a definite problem. Groaning and yelling came wafting through the air reminding me of Sloth from the Goonies. . .
After a few hours of bad sleep I was wisked off to testing. CT scan, Echocardiogram, chest xray and ultrasound of my heart and carotid arteries. I was still very cold . . .
The food was terrible. I had to ring to go to the bathroom (I did understand this as a safety measure). After all that the tests came back negative (yay). . .
With all of this I asked myself, why couldn't I go home and do any other tests on an outpatient basis? I asked for the nurse and he paged the doctor who came to see me. I convinced him, as a medical professional (retired, medically) myself that I could monitor my status, my husband would be home and I could do anything else outpatient. He was initially reluctant but finally said yes. . .
I came home and felt fine. This is Saturday and I still feel fine. I have reasoned that since all my tests were negative something else must have happened. Here are the facts: I had not eaten in a long time, it was 1:30am, I had not consumed adequate liquids that day, there was an adrenaline rush from seeing the opening of the musical (my husband was the pit conductor) and I tend to be lightheaded easily due to medications. I believe it was this combination of factors that lead to my fainting. . . .
I am going to follow up with the doctor, I did buy a blood pressure cuff and I have consciously tried to drink more water today. . .
I did come away from all of this with one thought: I am going to take a little bit more time for myself. I do not want to go back to that room again, ever!
Wednesday, February 23, 2011
Why I Isolate . . .
It has been hinted at by family that I may be spending too much time alone. "It isn't healthy" they say "you will just dwell on yourself" or "it will make the pain seem worse". I listen, trying not to react, roll my eyes or say something that will be misconstrued or offend anyone. So I pondered. Am I isolating? Why, yes I am.
Why I isolate is partly self preservation, partly sanity driven and mostly comforting. What I mean by all this is I want to isolate. Few people understand what I am dealing with, the constant pain, fatigue, and aches plus other varying maladies. Add to that questions regarding why I can go to the grocery store but I cannot work (are you kidding), do I really need the cane (only if I don't want to fall over) and is CFS/fibromyalgia real cause someone told me it isn't (well if it isn't someone should come and tell my body).
I isolate to keep my sanity by surrounding myself with familiarity, warmth, smells and noise levels that I can tolerate plus no one with questioning looks when I use my handicapped placard. People do not understand that odors, noises and other environmental factors can increase my discomfort. Large gatherings of people can stress me out. Sometimes just the thought of certain events makes me ill.
I suppose it is possible that some will think I am developing a phobia and that I am scared to leave my home. Nonsense. I can leave but on my terms if possible. If I am allowed to plan it increases the odds that the outing will be successful or at least tolerable.
I am trying to get better. That is always my goal but I also have to live in this body so some level of acceptance is important as well. Maybe I will not have to isolate as much someday but, for now, it is necessary. Necessary for my sanity. Necessary for my body. Necessary for me.
Why I isolate is partly self preservation, partly sanity driven and mostly comforting. What I mean by all this is I want to isolate. Few people understand what I am dealing with, the constant pain, fatigue, and aches plus other varying maladies. Add to that questions regarding why I can go to the grocery store but I cannot work (are you kidding), do I really need the cane (only if I don't want to fall over) and is CFS/fibromyalgia real cause someone told me it isn't (well if it isn't someone should come and tell my body).
I isolate to keep my sanity by surrounding myself with familiarity, warmth, smells and noise levels that I can tolerate plus no one with questioning looks when I use my handicapped placard. People do not understand that odors, noises and other environmental factors can increase my discomfort. Large gatherings of people can stress me out. Sometimes just the thought of certain events makes me ill.
I suppose it is possible that some will think I am developing a phobia and that I am scared to leave my home. Nonsense. I can leave but on my terms if possible. If I am allowed to plan it increases the odds that the outing will be successful or at least tolerable.
I am trying to get better. That is always my goal but I also have to live in this body so some level of acceptance is important as well. Maybe I will not have to isolate as much someday but, for now, it is necessary. Necessary for my sanity. Necessary for my body. Necessary for me.
Monday, February 21, 2011
Stressful times
This is a particularly stressful time for me. Ignore my husband's crazy job as a college band director, my worries as a mom and the financial issues of being disabled. To increase my pain and fatigue is my mother's health.
Mom has been declining for awhile. Her heart is slowly giving out. She is losing weight and needs oxygen 24 hours a day. She is not eating very well. Mom now lives with my sister who is an RN. I am facing the fact that I will soon be losing my mom, my biggest cheerleader and my role model. It hurts in more ways than one. The pain in my heart is accompanied by pain in my body and increasing fatigue.
How do you deal with this impending loss? I have a few suggestions that are working for me:
1. Make sure I take my daily vitamin supplement, watch my diet and get adequate sleep.
2. Try and do some form of exercise daily even if it is only a few chair moves or a couple of bicep curls.
3. Read from my Bible daily. Nothing calms like God's inspired Word.
4. Spend time with my mom. I have asked so many questions about relatives, her life and my deceased father's life. Things I have always wanted to know.
5. Take my sister out to lunch to give her some down time and a chance to talk.
6. Don't forget to take time to spend with my husband.
7. Turn off the tv and sit in silence. Let the emotions wash over me and give them the forefront.
8. Try and keep the basics of the house in order. Cook simple meals. Don't let the laundry get too deep.
9. Eat chocolate.
10. Listen to my IPOD.
In addition, make sure my prescriptions are filled and any other items I regularly use are available in case of a flare.
This is my personal list I am sharing with you. This list may and probably will not work for your personal situation and stress. During times of stress we need to try and keep some normalcy and also some time to honestly deal with the grieving that has already started.
The reality is I am soon going to lose mom. It hurts, it stinks and it is normal. I am going to embrace the moments as they come. That works for me.
Mom has been declining for awhile. Her heart is slowly giving out. She is losing weight and needs oxygen 24 hours a day. She is not eating very well. Mom now lives with my sister who is an RN. I am facing the fact that I will soon be losing my mom, my biggest cheerleader and my role model. It hurts in more ways than one. The pain in my heart is accompanied by pain in my body and increasing fatigue.
How do you deal with this impending loss? I have a few suggestions that are working for me:
1. Make sure I take my daily vitamin supplement, watch my diet and get adequate sleep.
2. Try and do some form of exercise daily even if it is only a few chair moves or a couple of bicep curls.
3. Read from my Bible daily. Nothing calms like God's inspired Word.
4. Spend time with my mom. I have asked so many questions about relatives, her life and my deceased father's life. Things I have always wanted to know.
5. Take my sister out to lunch to give her some down time and a chance to talk.
6. Don't forget to take time to spend with my husband.
7. Turn off the tv and sit in silence. Let the emotions wash over me and give them the forefront.
8. Try and keep the basics of the house in order. Cook simple meals. Don't let the laundry get too deep.
9. Eat chocolate.
10. Listen to my IPOD.
In addition, make sure my prescriptions are filled and any other items I regularly use are available in case of a flare.
This is my personal list I am sharing with you. This list may and probably will not work for your personal situation and stress. During times of stress we need to try and keep some normalcy and also some time to honestly deal with the grieving that has already started.
The reality is I am soon going to lose mom. It hurts, it stinks and it is normal. I am going to embrace the moments as they come. That works for me.
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