Medicating teenagers is a tricky thing. Back when I was a teen my first doctor we went to with my headache concerns was very reluctant to medicate me. The second doctor was fine medicating me and instead of listening to me that the medication was giving me no relief, he just upped the dosage causing me more reaction from the meds than the headaches. It was a yucky time to be me.
My first doctor however sent me to do some physical therapy, hoping the problem was in muscles and training of my neck. This was my first stab at trying something different to help my headaches. I worked on machines, practiced different exercises, I think they used electro therapeutic point stimulation, tried relaxation techniques(similar to what I used during bio-feedback, but this therapy took place several years before bio-feedback). It was a start- and a good place to start at that. I learned a lot about my body and its reactions to different things- such as why physical support is important(always travel with a pillow) and why its important to get up and move if I have been sitting around for a while.
I am about to go in to physical therapy for the second time in my life for a problem I am having with my hip. I am interested in seeing what they can do for me and while I am not skeptical, I am cautious with allowing myself to feel hope. Starting down this path again, even though its for a different issue, just reminded me of all those afternoons spent in the basement of the hospital when my hope was at its highest not having any idea 20+ years later I would still be dealing with headache pain.
Monday, November 22, 2010
Thursday, November 18, 2010
Its OK to lie
Its OK to lie- that is what I tell myself anyway.
How are you? "Fine." "OK." "Oh, you know."
These answers are all lies. I am not fine. I am not OK. You couldn't possibly know.
I might even answer: "Its been a rough day." or "Not feeling so good." But these are lies too. Its more than that.
I have had some positive things happen lately. I am on a good track for my health. But today I am in extreme pain and feeling very low. I am on day 5 of intense pain. I am feeling lonely. No one checks on me. I am throwing myself a pity party. And eating chocolate. Wishing I could just spend an entire day in bed and in peace and quiet. That is not in the cards, so I am going through the motions even though it is excruciating to do so. And I lie about that too. I will never admit to anyone how hard it really is to live a "normal" life.
Of course no one checks on me. I should feel lonely. I lie. I am not comfortable talking about my pain. Not to those closest to me. Not to those I trust or who love me. Not even to paid professionals.
So, my walls are up pretty high. I think this time I will leave them up for a while and just wait to see who breaks them down. I am going to lie again and say I don't care if nobody does.
How are you? "Fine." "OK." "Oh, you know."
These answers are all lies. I am not fine. I am not OK. You couldn't possibly know.
I might even answer: "Its been a rough day." or "Not feeling so good." But these are lies too. Its more than that.
I have had some positive things happen lately. I am on a good track for my health. But today I am in extreme pain and feeling very low. I am on day 5 of intense pain. I am feeling lonely. No one checks on me. I am throwing myself a pity party. And eating chocolate. Wishing I could just spend an entire day in bed and in peace and quiet. That is not in the cards, so I am going through the motions even though it is excruciating to do so. And I lie about that too. I will never admit to anyone how hard it really is to live a "normal" life.
Of course no one checks on me. I should feel lonely. I lie. I am not comfortable talking about my pain. Not to those closest to me. Not to those I trust or who love me. Not even to paid professionals.
So, my walls are up pretty high. I think this time I will leave them up for a while and just wait to see who breaks them down. I am going to lie again and say I don't care if nobody does.
Thursday, November 4, 2010
Doctor Visit
Its funny how when I seem to go to the doctor its usually not for my headaches. I go in for some other reason and then use that time to ask her a question or two. I wonder why I can't just face the fact that these headaches are real and consuming and deserve an appointment all their own.
I had an experience recently of someone discounting my headaches because I can live my life with them. I don't always collapse in my bed and disappear- I usually push through the pain, nausea, discomfort. I call this my strength, but maybe its stupidity. During a headache I am usually a bear to deal with but it is normally just my family who sees it. I can fake it for the rest of the world- shield them from the monster this chronic pain creates. Seriously, who really wants to know how I am really doing when they ask: hey, how are you?
Anyway- heading into the doctor today for a different issue other than headaches- a pain issue- but hopefully she can send me in the right direction to get this other issue fixed. I will talk to her about my headache issues and maybe get a couple of adjustments made.
I simply need to be more assertive in this area of my life and I am sincerely wondering why I am not. I would be assertive about it if it were my children, my husband, my parents. Do I not place enough value on myself? Or is it due to habit? Fear? Laziness? All of the above? Maybe its something else I haven't come up with yet but at least I have identified something needs to change. Now its the fun part- changing it.
I had an experience recently of someone discounting my headaches because I can live my life with them. I don't always collapse in my bed and disappear- I usually push through the pain, nausea, discomfort. I call this my strength, but maybe its stupidity. During a headache I am usually a bear to deal with but it is normally just my family who sees it. I can fake it for the rest of the world- shield them from the monster this chronic pain creates. Seriously, who really wants to know how I am really doing when they ask: hey, how are you?
Anyway- heading into the doctor today for a different issue other than headaches- a pain issue- but hopefully she can send me in the right direction to get this other issue fixed. I will talk to her about my headache issues and maybe get a couple of adjustments made.
I simply need to be more assertive in this area of my life and I am sincerely wondering why I am not. I would be assertive about it if it were my children, my husband, my parents. Do I not place enough value on myself? Or is it due to habit? Fear? Laziness? All of the above? Maybe its something else I haven't come up with yet but at least I have identified something needs to change. Now its the fun part- changing it.
Friday, October 29, 2010
Stress Relief
A big stressor in my life was just lifted from my shoulders this past week. Our so sweet 20 month old had surgery on her kidney on Monday. I am looking forward to my new life with a child with a healthy kidney. A life where a small fever will not set off panic alarms and buttons in my head. A life where the thought of surgery created knot after knot and the constant churn of nausea in my tummy. She did just about as good as a baby can do and I am well pleased. I am so grateful to have this experience behind us. I know stress is a big factor to my headaches and I am interested to see how they change with this stress off my list.
Friday, October 15, 2010
Relaxation
Lately I have been trying to help my kids go to sleep. Big Girl has troubles falling asleep like her mom. Thankfully its not due to pain, its just because her mind runs a mile a minute and its hard to calm it down. Little Man is pretty good about falling asleep, but he has his nights when he is restless. They sleep in the same room, so they can antagonize each other too.
I have resorted to using a relaxation technique where they hold muscles tight for a few seconds release. I ask them to visualize the tension leaving their body. This was a technique I learned when I was a little older then them. It seems quite effective and only once or twice have they not settled completely down as a result.
When I was in High School I tried Bio-Feedback where different muscle groups were attached to sensors and I would "hear" if the tension was present or not. The idea was I could train myself to relax. I remember many times laying there wondering why I would still feel so much pain if I was making those machines completely silent. As a teenager, I wanted immediate results. However as an adult I wonder if that relaxation allows for a nights rest which in turn will allow for less pain the next day, or after several nights rests allow for less pain over the next week. I don't actively go through my muscle groups and tense and release them and I am training my children. However I do relax and meditate, even in severe pain, because honestly, I what else can I do?
I have resorted to using a relaxation technique where they hold muscles tight for a few seconds release. I ask them to visualize the tension leaving their body. This was a technique I learned when I was a little older then them. It seems quite effective and only once or twice have they not settled completely down as a result.
When I was in High School I tried Bio-Feedback where different muscle groups were attached to sensors and I would "hear" if the tension was present or not. The idea was I could train myself to relax. I remember many times laying there wondering why I would still feel so much pain if I was making those machines completely silent. As a teenager, I wanted immediate results. However as an adult I wonder if that relaxation allows for a nights rest which in turn will allow for less pain the next day, or after several nights rests allow for less pain over the next week. I don't actively go through my muscle groups and tense and release them and I am training my children. However I do relax and meditate, even in severe pain, because honestly, I what else can I do?
Monday, October 4, 2010
Log
This past week was a pretty good week as far as headaches go. I was pretty sore and tired after the triathlon, but the high seemed to get me out of my rut. That or the hormones finally leveled out. Today was good too. Last night I went to be pretty late- around 1:30. Had crazy but good dreams(the kind you just don't want to wake up from) of long lost friend until the baby woke me around 3 and wouldn't go back to bed until 4. This resulted in a grumpy mom at 7, and my poor kids put up with me. I snapped out of the grumps and layed low. I was even somewhat productive in my daily work. Started a new course of scripture study for personal growth. Cleaned up awesomely. Had dinner ready for my family even though I ran out to go give blood as soon as husband got home from work.
I think I am ready to report to my doctor and realize I don't have a lot to tell her except a general overall impression of how I am feeling and a general impression of progress I can't really back up. I need to start again on my headache log. I have been reading up on several headache blogs the importance of communication to the docs and how valuable this sort of tool is in this communication. I have tried to keep logs over my decades of suffering, however I am always unable to keep it going. I have always tried to make my logs very detailed- I might just resort to a five minute recall at the end of the day and any general ideas as to why or why not I endured pain. I need to do this.
I think I am ready to report to my doctor and realize I don't have a lot to tell her except a general overall impression of how I am feeling and a general impression of progress I can't really back up. I need to start again on my headache log. I have been reading up on several headache blogs the importance of communication to the docs and how valuable this sort of tool is in this communication. I have tried to keep logs over my decades of suffering, however I am always unable to keep it going. I have always tried to make my logs very detailed- I might just resort to a five minute recall at the end of the day and any general ideas as to why or why not I endured pain. I need to do this.
Monday, September 27, 2010
Another Triathlon
I am copying and pasting a portion of this from my personal blog- but I just completed my third sprint triathlon. I never thought I could do something so physically challenging in my life. Not just because of my headaches, but because I am just not the kind of person who is into exercise.
Last week was a tough one- Severe headaches and nausea every single day. Extreme throbbing and pain that I just had to push through because I had commitments I didn't want to miss(I was excited and honored to be asked by my 16 year old nephew to tutor him in french- I felt horrible, but HAD TO SAY YES! And even though I hurt, it felt good to be with my boy.). I went for a simple walk on Friday with the baby and I felt winded. I was in so much pain- I simply wondered how in the world was I going to manage the tri-athlon the very next day. The pain wouldn't go away. But I refused to panic and realized if I felt horrible I would deal with it then. Here is what I came up with:
Last week was a tough one- Severe headaches and nausea every single day. Extreme throbbing and pain that I just had to push through because I had commitments I didn't want to miss(I was excited and honored to be asked by my 16 year old nephew to tutor him in french- I felt horrible, but HAD TO SAY YES! And even though I hurt, it felt good to be with my boy.). I went for a simple walk on Friday with the baby and I felt winded. I was in so much pain- I simply wondered how in the world was I going to manage the tri-athlon the very next day. The pain wouldn't go away. But I refused to panic and realized if I felt horrible I would deal with it then. Here is what I came up with:
I have found that even though I may be carrying around extra weight and don't look or feel how I want to, that I am still capable of setting physical goals and achieving them. I have found that despite any physical pain I am in, I am able to focus and relax and enjoy the moment at hand. I have found that although it might not be very pleasant, the reward for endurance is sweet and gratifying. I simply found a strength inside of me that allows me to keep going. The power of prayer is huge, and I am grateful to have it on my side.
I think I can becomes I know I can.
My goal is now a reality.
I feel good about myself and my abilities.
Thanks to my friends and my dear sweet family for supporting me and believing in me too.
Thursday, September 23, 2010
one step forward... two steps back....
I noticed three days in a row: no headache!
My medication takes two months to really start working- by month six, whatever changes have taken place are probably it. So I am almost to the two month mark and have noticed a change.
The medication for pain works on the migraines. I don't always have migraines, so it isn't always effective. I know I should call the doc and try something else. But I just have a block on calling doctors. For me anyway, not my children(I finally have surgery scheduled for the baby end of October after weeks of what felt like incessant phone calls).
The meds for sleep don't really work. I don't get sleepy feeling, just drugged feeling. Not so good for the next day when I still didn't get enough sleep. Another thing to mention to the doctor.
My husband and support person has been much kinder since our last blow-out. We had our anniversary. We made some decision about our future. We have renewed our commitment to each other that includes more dates and counseling- which is taking a back-seat since I was working so hard on arrangements for the baby. But at least we are on the same page. I feel he just over-heated and had to get to his re-set button. He has no idea how much one little phone call from work to simply ask me how I am feeling can mean to me.
Since those three non-headache days last week my period started and I have plummeted into the black-hole of headaches. I skipped book-club and have been in my bed every night by 9 with a heating pad and an ice pack. Not only have I been headachy, I have been exhausted and nauseated. I called my sister to tell her I would think I was pregnant if I wasn't on my period. I told my other sister my periods have been getting harder lately because I am starting the journey to meno-pause. She told me I am nuts because I am only 34. Whatever-- right now I am having very bad thoughts as to what I would like to do to relieve this pain. But no thought I would actually act upon. It sucks.
On Saturday I participate in my third and final tri-athlon of the season. I am very nervous because of my pain this week. My sister and I tried to do a run-through on Monday and my energy was so low I couldn't do the third part: the 5K run/walk. I will ask the good Lord for his strength to make up for my lack of strength. After the tri I need to come home to go to my husbands company picnic, and then Sat. night we have a Broadcast to the women at church. I will be busy... and exhausted. I wonder if I will make it to all three events?
So... I am frustrated and in pain as I write this. I am nervous about this weekend. But I will do what I always do... put my shoes on... and face my life head on.
My medication takes two months to really start working- by month six, whatever changes have taken place are probably it. So I am almost to the two month mark and have noticed a change.
The medication for pain works on the migraines. I don't always have migraines, so it isn't always effective. I know I should call the doc and try something else. But I just have a block on calling doctors. For me anyway, not my children(I finally have surgery scheduled for the baby end of October after weeks of what felt like incessant phone calls).
The meds for sleep don't really work. I don't get sleepy feeling, just drugged feeling. Not so good for the next day when I still didn't get enough sleep. Another thing to mention to the doctor.
My husband and support person has been much kinder since our last blow-out. We had our anniversary. We made some decision about our future. We have renewed our commitment to each other that includes more dates and counseling- which is taking a back-seat since I was working so hard on arrangements for the baby. But at least we are on the same page. I feel he just over-heated and had to get to his re-set button. He has no idea how much one little phone call from work to simply ask me how I am feeling can mean to me.
Since those three non-headache days last week my period started and I have plummeted into the black-hole of headaches. I skipped book-club and have been in my bed every night by 9 with a heating pad and an ice pack. Not only have I been headachy, I have been exhausted and nauseated. I called my sister to tell her I would think I was pregnant if I wasn't on my period. I told my other sister my periods have been getting harder lately because I am starting the journey to meno-pause. She told me I am nuts because I am only 34. Whatever-- right now I am having very bad thoughts as to what I would like to do to relieve this pain. But no thought I would actually act upon. It sucks.
On Saturday I participate in my third and final tri-athlon of the season. I am very nervous because of my pain this week. My sister and I tried to do a run-through on Monday and my energy was so low I couldn't do the third part: the 5K run/walk. I will ask the good Lord for his strength to make up for my lack of strength. After the tri I need to come home to go to my husbands company picnic, and then Sat. night we have a Broadcast to the women at church. I will be busy... and exhausted. I wonder if I will make it to all three events?
So... I am frustrated and in pain as I write this. I am nervous about this weekend. But I will do what I always do... put my shoes on... and face my life head on.
Thursday, September 9, 2010
Invisible Illness Week
National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.
Check out: invisibleillness.com
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic Migraine/Headache
2. I was diagnosed with it in the year: 6th Grade
3. But I had symptoms since: Around puberty
4. The biggest adjustment I’ve had to make is: taking it easy when all I want to do is ignore and keep on going.
5. Most people assume: if I am moving around and appear to be normal, I am not hurting.
6. The hardest part about mornings are: getting up before I am ready- with kids that is almost every morning
7. My favorite medical TV show is: None right now
8. A gadget I couldn’t live without is: My crock-pot- that is a gadget- right?
9. The hardest part about nights are: going to sleep- I either hurt too much to sleep, or I don't hurt and don't want to slow down long enough to sleep
10. Each day I take _10-20_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love it and think it works, but have a hard time keeping with it because a)it is expensive(not covered by insurance) and b) its alternative so I let it drop off my radar
12. If I had to choose between an invisible illness or visible I would choose: invisible. I may not have life figured out, but I can fake it like the best of them... and sometimes faking it helps pull me through.
13. Regarding working and career: It was sometimes easier going off to work with pain because I had a distraction.
14. People would be surprised to know: I have headaches that last 8-10 days- usually one or two a month.
15. The hardest thing to accept about my new reality has been: some of the people closest to me are fed up and no longer patient with me and my pain.
16. Something I never thought I could do with my illness that I did was: tri-athlons- I will participate in my third one at the end of September.
17. The commercials about my illness: aren't really about my illness.
18. Something I really miss doing since I was diagnosed is: spontaneous adventures- who knows if I will have a headache or not.
19. It was really hard to have to give up: Needlepoint- I enjoy the detail work, but can't do it with a headache.
20. A new hobby I have taken up since my diagnosis is: Yoga- My husband got me started in yoga for relaxation before we were married in hopes it would help me. I enjoy it and can usually do it with a headache. My kids do it with me for about 5 minutes too.
21. If I could have one day of feeling normal again I would: completely clean my house, play for hours with my kids in the park, and enjoy an evening alone with my husband.
22. My illness has taught me: not many people understand, but that is OK, a lot of people still care.
23. Want to know a secret? One thing people say that gets under my skin is: give me advice that completely cured their headaches(which couldn't possibly be like mine)
24. But I love it when people: listen and actually try to understand
25. My favorite motto, scripture, quote that gets me through tough times is: I can live with pain. I can live with my headaches. I can still CARE for my FAMILY and meet my obligations. I might do it better without the pain, BUT I am capable to do it with it. And I think that is pretty darn OK.
26. When someone is diagnosed I’d like to tell them: listen to their bodies- its OK to take it easy.
27. Something that has surprised me about living with an illness is: even in great pain, I can find happiness.
28. The nicest thing someone did for me when I wasn’t feeling well was: extended understanding. And took my kids away allowing me to not worry about them and rest.
29. I’m involved with Invisible Illness Week because: I just found out about it and am starting to get more involved in the online community that deals with headaches.
30. The fact that you read this list makes me feel: loved.
Check out: invisibleillness.com
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic Migraine/Headache
2. I was diagnosed with it in the year: 6th Grade
3. But I had symptoms since: Around puberty
4. The biggest adjustment I’ve had to make is: taking it easy when all I want to do is ignore and keep on going.
5. Most people assume: if I am moving around and appear to be normal, I am not hurting.
6. The hardest part about mornings are: getting up before I am ready- with kids that is almost every morning
7. My favorite medical TV show is: None right now
8. A gadget I couldn’t live without is: My crock-pot- that is a gadget- right?
9. The hardest part about nights are: going to sleep- I either hurt too much to sleep, or I don't hurt and don't want to slow down long enough to sleep
10. Each day I take _10-20_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: love it and think it works, but have a hard time keeping with it because a)it is expensive(not covered by insurance) and b) its alternative so I let it drop off my radar
12. If I had to choose between an invisible illness or visible I would choose: invisible. I may not have life figured out, but I can fake it like the best of them... and sometimes faking it helps pull me through.
13. Regarding working and career: It was sometimes easier going off to work with pain because I had a distraction.
14. People would be surprised to know: I have headaches that last 8-10 days- usually one or two a month.
15. The hardest thing to accept about my new reality has been: some of the people closest to me are fed up and no longer patient with me and my pain.
16. Something I never thought I could do with my illness that I did was: tri-athlons- I will participate in my third one at the end of September.
17. The commercials about my illness: aren't really about my illness.
18. Something I really miss doing since I was diagnosed is: spontaneous adventures- who knows if I will have a headache or not.
19. It was really hard to have to give up: Needlepoint- I enjoy the detail work, but can't do it with a headache.
20. A new hobby I have taken up since my diagnosis is: Yoga- My husband got me started in yoga for relaxation before we were married in hopes it would help me. I enjoy it and can usually do it with a headache. My kids do it with me for about 5 minutes too.
21. If I could have one day of feeling normal again I would: completely clean my house, play for hours with my kids in the park, and enjoy an evening alone with my husband.
22. My illness has taught me: not many people understand, but that is OK, a lot of people still care.
23. Want to know a secret? One thing people say that gets under my skin is: give me advice that completely cured their headaches(which couldn't possibly be like mine)
24. But I love it when people: listen and actually try to understand
25. My favorite motto, scripture, quote that gets me through tough times is: I can live with pain. I can live with my headaches. I can still CARE for my FAMILY and meet my obligations. I might do it better without the pain, BUT I am capable to do it with it. And I think that is pretty darn OK.
26. When someone is diagnosed I’d like to tell them: listen to their bodies- its OK to take it easy.
27. Something that has surprised me about living with an illness is: even in great pain, I can find happiness.
28. The nicest thing someone did for me when I wasn’t feeling well was: extended understanding. And took my kids away allowing me to not worry about them and rest.
29. I’m involved with Invisible Illness Week because: I just found out about it and am starting to get more involved in the online community that deals with headaches.
30. The fact that you read this list makes me feel: loved.
Sunday, August 29, 2010
Fight
We had a fight- one of the worst in our marriage. The reason? I am not doing enough around here. Because I always have a headache.
Will headaches bring down my marriage? Maybe its time to talk to the doctor again. And a marriage counselor...
Will headaches bring down my marriage? Maybe its time to talk to the doctor again. And a marriage counselor...
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