need some experience, strength and hope

mlouise · Member

need some experience, strength and hope

we can · Senior Member

Hi I'm an addict named Sandra
I can relate to your situation I have had a head ache spotted with migrains since May of 99' and I suffer from chronic pain. I think the hardest part was sorry 'is' trying to accept that this is my life now.
I do take pain pills and have been able to controll the amount I take becouse they make me sick if I take more than 4 a day. I guess I'm lucky there, one thing I have learned over the years is that pills should not make you pain free, if they do then you are taking too much.
Physical pain causes me emotional pain witch increases my physical pain, its an endless cycle that I can get stuck in.
Also I have learned that what I use for my pain today will not work continuasly, so I try to mix it up; meds, physio, massage, meditation, relaxation, exersize. Nothing I try lasts forever but switching it up helps, all of them give me some relief for a short period of time then I switch again.
I just started working out of this book that I found on this site in the recovery book store called Chronic Illness and the 12 steps, a practical approach to spiritual resilience by Martha Cleveland. It is teaching me to accept my illiness and make the best of my life regardless of how I feel by using the 12 steps.
The days when I can accept my limitations and be ok with not being wonder woman are the most rewarding and manageable for me.
I have been in recovery now for 20 months so I'm still new at this but I have found a way (most days) to have some serenaty, inspite of how I'm feeling.
It's a process that involves surender, acceptance and faith. I'm am still greaving the loss of who I use to be and am in theraphy for it.
I know that I could have stayed in my basement getting high and justifying that with "well if you felt as much pain as me, you would get high too" line, but the ability to move forward and get a small bit of freedom from pain by being clean and dealing with it rather than using it as my crutch has made a world of differance for me.
Just want you to know there is hope , it might not be the life you had before but it can still be a rewarding one if you are willing to accept the pain and grow with it.
So glad you found us here , there are some amazing people on this site so please keep coming back!
Sandra

mlouise · Member

Hi Sandra,

Thank you so much for your reply. I really needed to hear from someone who is going through the same stuff. The book you suggested sounds interesting. How do you get to the online bookstore? I couldn't find it on this site. As far as managing the pain, I really want to do this without any narcotics. I don't feel that is necessary for everyone in recovery, but for me, I so want to be totally free of all substances. But, like you said, acceptance is so key. Acceptance is key in my life as it is now- headaches, migraines, pain AND medication if needed. I look forward to talking with you again. Thanks so much. I would love to find Martha Cleveland's book.

Thanks again,

Mystie

tvb3 · Member

I hope I can help you. I suffered with migraines for 2 years. None of the preventative drugs worked for me except Topamax. The narcotics only made things worse because they would help for a day or two and then I'd get rebound migraines. My neurologist referred me to Jefferson Headache Clinc in Philly. I had to wait a long time for an appointment and I think you'll need to have your doc refer you. Anyway, this is my experience. I was hospitalized in Philly for 3 days. They introduced an IV med called DHE (I'll have to get the actual name of it later) that was not a narcotic and took my headache away in 15 minutes. The reason they do it as an inpatient is not everyone tolerates it well so they want to keep a close eye. The whole floor is for headache patients which is crazy because I found out from another patient that her's was head pain, not headache. Some ER examined her spinal fluid and said her headaches were caused by hydroencephalitis or water on the brain. Her pain was constant. I mean neverending. I got some gratitude man. Now I take the Topamax and when I get a headache I inject myself with DHE and it's gone in minutes. Good luck.

mlouise · Member

Hi,

Thanks so much for all of your suggestions. I agree that narcotics or any abortive medication can only make things worse, especially the narcotics! I have been in rebound in the past. It's so easy to get into rebound when you suffer from daily headaches and frequent migraines. I am taking Topamax right now. I have been on it in the past and it has helped before. Right now, as far as a preventative goes, I think this past cycle was so far gone before I got back on the preventative that the Topamax is having a hard time doing the job that it really can do. I hope that makes sense. I may be in a little rebound right now. I probably am. I am due to see my neurologist on the 6th of Feb. and will let him know this. I have found in the 4 plus years of this journey, that like sobriety, there are many things that I have to do simultaneously to have peace and relief. I have to eat well, (that's a huge piece of it- sugar, chocolate, cheese, peanut butter, bananas, sandwich meat... basically all of the food I lived on prior to this will give me a headache), exercise, meditate/do Kundalini Yoga, get enough sleep and stay on top of my recovery- most importantly continue to grow spiritually. This has all been a bit overwhelming and almost too much to handle at times. But, I am so glad that I have found this site. My AA sponsor and friends definately sympathize and try to understand. But, like I said earlier, I have not found anyone who has really walked in my shoes. I would love my recoery to be like it used to be- free of ALL substances!!!! I just feel God wants that for me. Or, maybe I'm not accepting things as they are. What is the abortive medication you found that works for you that is not a narcotic? I have tried everything! I have even tried Imatrex injections. I am in Birmingham, Alabama by the way. Thanks so much.

Mystie

we can · Senior Member

Go to www.12stepforums.net click on book store then go to the second page . you will find the book there it's called Chronic illness and the 12 steps. You can order it through amazon. Good luck

mlouise · Member

Hi Sandra,

Thank you so much for the suggestion about the book and how to find it! I just ordered it! I can't wait to get it. Thanks again so very much.

I look forward to keeping in touch. I hope you have a good night.

Peace,

Mystie

tvb3 · Member

Sorry, I forgot to look and see the full name of the drug DHE. It's something like dihydroergotomine). Ask your neuro doc if he is familiar with it. If he is not, ask him to call the Jefferson Headache Clinic and speak with one of the docs there. This med is also self-injected into the muscle, but believe the only side-effect I had was I got hot flashes. It does not make you feel high.

mlouise · Member

Hi again,

I was just wondering, have you tried most everything available too? Was the DHE (I think that is what you suggested) the last option? The Frova that has been working and had stopped, worked for me again- sort of. I got a migraine yesterday and took a Frova, it went away, and then it came back today, took another Frova and it went away again! Yeah!!!! I love it! I think I gave myself enough of a break from the Frova that it was able to work again. But, you know there is that fear that it won't again. BUT, then you have to have faith! I guess my question is, what do you suspect is the reason why only one thing works? And, why it seems we are so resistant to relief? Or, is it just me? Was the DHE one of the only meds that works for you? Thanks so much for your help.

M

mlouise · Member

Hi,
I got my book and I am really getting a lot out of it already. I look forward to really getting into it and doing some really good work on this stuff. It will really help having this book to guide me through the steps with this chronic illness. It has really affected my family as well!

Thanks so much,

M

Prendila · Newbie

Hi there,

I have had migraines and headaches since I was a child. It's hereditary. I used to take so much medication for them. Now I try not to take anything if possible. I mean sometimes, I have to. I don't have a choice. But the only thing I will take now is Tylenol Ultra. This seems to take away my everyday headaches and if I catch it fast enough, will take the bite off the migraine, or take it away completely. There are some things you could look into though, like banana's are high in potassium, which is great for headaches. Cold ice pack. I don't know if this just numbs your head and makes you think of the ice cold pack but this has worked at times. This is just a funny thing to throw in but I'm Italian and whenever I have a really bad headache and I'm visiting my mother she insists on making me a steak or liver. (Unless your a vegetarian then that's probably not a great idea...) This isn't a common practice but you could even try booking an appointment with an Iridoligist. They will analyze your eyes and from there can tell you what may be causing your headaches as your eyes are a complete map to your system. It's pretty interesting. I've suffered from headaches forever so I've tried so many things. Never know. I do hope you find something that works for you.

Pren.

Tahir · Member

Hi Pren & Mystie, welcome aboard to MIP. Glad we have you here with us.

-- Edited by Tahir at 06:19, 2007-02-11

we can · Senior Member

I'm so glad you like the book. My sponsor and I both have disabilities and chronic pain so we are doing a book study and the step work in it together. I don't know about you but for me it was like the first time I picked up the basic text, I felt like the person who wrote it was fallowing me around an knew exactly how I felt. I hope you find some peace through your journey. I think the best answer for my pain is god ,I go to the doctors but they can only do so much. I need god to help me be ok with this body I have been given. That is why acceptance is key for me, the more I fight the pain or Deni the emotions surrounding it the worse I feel. I really hope it helps you. Skip to the back and read chapter 14 What will happen it is so encouraging.

tvb3 · Member

Yes I tried everything and DHE was finally what worked for me.

mlouise · Member

Hi all,

Thank you so much for all of your suggestions! I am so happy that I found this board! What a gift. I wish we could all be in a meeting together. Anyway, yes, the ice is great- when I can stop and give my kids to my husband and lie down. Or, just sit up and put the ice on my head while in the room with them:) God has really watched over me and my family, because they have been so patient and willing to wait the headaches out. They are happy to have me, sick or well. I am grateful.

Sandra, I will skip to chapter 14- I can't wait to see what it says. It is speaking directly to me! It is amazing. I wish I had someone to go through the steps with me here in town, on this stuff.

Prendila, thanks for the idea about the protein. I wonder if it has to be steak or liver. I don't eat steak or liver, but I do eat other protein. I do feel well when I eat protein, more energetic. I am seeing a holistic nutritionist and she has given me a lot of wonderful ideas. I am TRYING to eat Ayurvedically. I do feel horribly- no understatement- when I eat certain foods- which are all of the foods that I used to eat regularly! It has been a very hard switch! As you all know, we can be... at least for me, I am a very impatient and rebelious person, which only hurts in the long run. Character defects! So, I have had a hard time feeding myself the right foods to take care of myself- some of the time. A bit of a cycle. I am beginning to "get it" though. The book Sandra suggested is going to be huge for me. Of course, the steps is WHERE IT'S AT! I've known all along that I've needed to find peace and acceptance with this illness through the steps, I just didn't know how. My sponsor doesn't suffer and doesn't relate. I didn't mean to be so long-winded. I just wanted to express my gratitude for all of your help and suggestions.

Thanks again. I look forward to talking with you all again soon.

Love,

M

P.S. tvb3- I will talk with my neuro about the DHE- thanks again.

mlouise · Member

Hi Sandra,

I don't know if I am doing this message board thing right, or not. Maybe I am supposed to start a new subject now... I don't know? Anyway, I wanted to ask you if you have been online for any of the meetings. Have you shared a lot at the online meetings? What has been your experience, if you don't mind my asking? I hope you are doing okay today. I look forward to talking with you again soon.

Thanks so much,

Mystie

we can · Senior Member

Hi Mystie
I dont know if there is a right or wrong way to use this board, I think your doing fine. Well I have only made it to one on line meeting here, only because I still go to my meetings almost every night and I dont get home on time. I did enjoy the one I made it too. I prefer the chat room it's a little faster pased I get board easy lol.I haven been there for a while either, I tend to get caught up with what ever is going on and forget to make time to do the things I like.
I have been house hunting and it's consuming my time. I started the step study on that book with my sponsor last week. We are starting with the part "identifying our emotional pain"pg. 17 we are going to right about each subtitle powerless, fear and anxiety, self-pity, ect. before we start the steps. I find I'm having a hard time keeping the work separate from my NA step work , trying to look at these steps without thinking about the addict part of me but just the illness part of me. So far so good I guess at least I'm doing it. I went for another MRI on Thursday hope they can tell me something from it, gota wait and see. Just taking it slowly one day at a time. Hope your feeling ok and thanks for keeping in touch. Maybe I will see you in the chat room some time.

Tahir · Member

The last three days I have been crippled with constant, and at times, unbearable pain in my body and limbs. I had been symptom-free from my hepatitis C manifestations for a long time now before it attacked me severely again 3 days back. I'm just not able to get up from my bed in the mornings, not able to place my feet on the floor and take a step... 10 to 12 steps with much effort is all I'm able to take at a time... I'm not able to work, or join my wife in our daily errands & plans... Today, however, I requested my wife to drop me at the ASC Meeting by car. After the meeting, I made a conscious effort to walk back to my house. It was painful, but nevertheless, I pushed myself hard and made it. But these footaches and pain in the muscles and the constant fatigue that I feel when I wake up in the mornings is really driving me mad, and ends up as a lot of frustration and stress at the end of each day.

Maybe, I try out the book suggested by Sandra too. If I remember right, the book is "Chronic Illness and the Twelve Steps" right? I will check out the recovery bookstore here at MIP and see if I can procure a copy from here. Thanks for the shares and the suggestion, everyone on this thread. Glad I took time and read them all.

we can · Senior Member

(((TAHIR))) I'm sorry your not feeling well, the book we are talking about is by Martha Cleveland it's called Chronic illness and the twelve steps a practical approach to spiritual resilience. It's an amazing book has given me a lot of hope and a way to get to that dam acceptance part that I so struggle with. I hope you get something out of it.

mlouise · Member

Tahir,

I am so sorry to hear you are feeling so badly! I am so grateful I found this group, so that we can help each other through these really tough times- sober. The book Sandra suggested is wonderful and I believe is helping me take the steps and apply them to the "illness". I have been taught and learned to apply the steps to every area of my life, not just drugs and alcohol, but trying to apply the steps in every area isn't always the easiest for me. Like Sandra said, it's that acceptance of powerlessness that is SO key- at least for me. I sure hope you start to feel better soon, physicially. We always have our spirit.

Peace,

Mystie

mlouise · Member

Sandra,

It's good to hear from you. I will try to work up some courage to do the message board sometime soon, I hope. It sounds like your step study will be great! I hope the house hunting goes well. I am doing well today. I hope you are too!

Peace,
Mystie

Tahir · Member

Thank you, Sandra & Mystie, for the strength and hope. I feel much better now, the symptoms seem to have subsided for now I guess

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