Has lyme caused any positive changes in your life?

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Cheezhead
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Date Joined May 2007
Total Posts : 517
   Posted 12/27/2009 8:42 PM (GMT -6)   
Lyme disease has changed each one of our lives. All of us would prefer never to have been infected by this disease. I can count numerous ways this disease has affected me negatively, as I'm sure all of you can as well. I started thinking about this subject recently when I realized how many changes I have made, or have "had" to make in my life. One of the biggest changes has been quitting smoking. I am 39yrs old, and have smoked since 17. I tried numerous times to quit prior to contracting Lyme disease, but never had much success until this illness forced my hand. Amongst many changes Lyme caused with my body was a negative reaction to cigarette smoke, within seconds of inhaling smoke I would feel awful . I still have urges for a cigarette from time to time, but I already feel how quitting has improved my health. Another change I made was not consuming alcohol. Don't get me wrong, I was never a huge consumer of alcohol, I would have an occasional night out, or a few beers while watching a football game. One of the first ABX my LLMD put me on was Flagyl, you can not consume alcohol while on this medication. It has been nearly three years since my last drink, although when I'm finally over this I'll still like to have an occasional drink. By far the biggest change has been my understanding of chronic conditions. Before dealing with my own chronic illness, I never thought much about the people suffering from these conditions, and how it affects their lives. I guess what this means is I'm less judgmental of others. Before I may have looked at someone and thought, they look healthy to me, but now I know appearances can be deceiving. One more positive change I'm trying to make is by being an advocate for myself and others. I hope in some way to find more positives, than negatives and hope that when I am symptom free from this disease I will end up a better person than I was before.

1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 12/28/2009 6:28 AM (GMT -6)   
Congrat for quitting! That sure is a tough one...I for one have yet to kick the habit.

I have learned to have alot more patience and compassion for people.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 12/28/2009 6:46 AM (GMT -6)   
Yes, that's great that you quit smoking!  I still smoke, yeah, I'm bad!   Didn't have to give up alcohol since I was already a recovering alcoholic for 25 years now..  
 
Having lyme also gave me so much compassion for others and trying to help people..  I truly believe that if a person has never experienced chronic lyme, they could never understand it no matter how much information one gives them..   Even to this day I don't dare mention the word "lyme" to my family because they didn't get it when I was sick and they still don't get it..     I'm glad that I get it!
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 12/28/2009 8:08 AM (GMT -6)   
Lyme has definitely made me understand what others go through in their lives.  It has made me want to be an advocate for the elderly who cannot or do not speak up for themselves when they are sick because no one will listen.
 
However, overall, lyme has defintely made me angier, sadder, slower and overall much more depressing.  But hopefully I'll get there!

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 12/28/2009 10:58 AM (GMT -6)   
Excellent subject Cheezhead.
I contracted Lyme disease when I was 24 and finally got treatment when I was 48. Those years were a gradual (unnoticable to others) descent into a personal hell. After 18 months of treatment I see many things in a totally different way. I appreciate how strong I am, having done all that I have while fighting Lyme as well. I really understand the dark road into mental illness and feel so much more compassion for those suffering from that.

Because of this disease my love and devotion for my husband has deepened. Even when I was at my worst he did not think it was me, he thought there was a chemical or physical problem. His faith in me did not waiver.

Lyme disease is like climbing your own personal mountain, after you're done, you feel like nothing else is all that difficult.

And I take nothing for granted.

Post Edited (achievinggrace) : 12/28/2009 7:06:24 PM (GMT-7)


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 12/28/2009 5:56 PM (GMT -6)   
Nicely put, achievinggrace. I, too, have experienced a deepening of devotion and love with my husband who, like yours, has always believed me and believed in me even when the doctors were saying nothing was wrong. That kind of loyalty is priceless. Like you, I've had Lyme undiagnosed for years, and though my health was deteriorating, I accomplished a lot. In a glass-half-empty mode I've wondered how much more I could have done had I not been continually battling health problems, but looking from the other side, I appreciate how strong my body is to have taken me this far when there were so many dastardly microorganisms accosting it. That goes for my mind, too. Lyme and the all-permeating pain it has bestowed on me certainly leaves me empathetic and compassionate. We never know someone else's experience. Understanding how someone can look so healthy, act so "normal," and yet be so hideously in pain has left me open to interpreting kindly and generously others' concerns and complaints about their health. In part, I learned that from how others responded to me when I was at my worst; the "get over it" people left me feeling misunderstood and further separated from others. Those who even for a moment imparted a kind word or a concerned glance affirmed me and my experience and made my world a better place. Forever more it is my mission to pass that on to others so that I, too, can help to make some else's experience a little more bearable.

When my late husband was dying, he wrote a book and in the beginning he made a comment that he was "fortunate to have a serious illness" because of what he'd learned and how it changed his perspective about people and experience. At the time, though I understood it intellectually, I didn't really get it. How could he, constantly in pain and pleagued with a plethora of horrible maladies, feel fortunate because of it? Now I'm starting to understand. Because of Lyme my priorities are realigned, I'm more focused, and I am far more thoughtful of others and far less judgmental. I'm not sure I am yet at a point where I would say it has been "worth it." Given the choice, I think I would still elect to have never been so sick, and to have lived my life unencumbered and in ignorance of the torture Lyme can bring. But, as long as I'm here, it is good to recognize that there are positives, and the positives are significant. Thanks, Cheezhead, for a great thread.

I look forward to a day when, like achievinggrace, I can cast an "after you're done" eye to the Lyme experience. That will be lovely.

Rose
I have Lyme; it doesn't have me.


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/28/2009 8:23 PM (GMT -6)   
1bitten2xshy said...
Congrat for quitting! That sure is a tough one...I for one have yet to kick the habit.

I have learned to have alot more patience and compassion for people.



Your are right, it is tough to do. To date it's the most difficult thing I've done in my life. I have tried to quit many times before, but I truly believe when you are ready to make the commitment to quit, anyone can do it. I quit cold turkey, the first couple weeks were very difficult, but I would not allow myself to buy another pack. My sister used a prescription to help her quit. She has been smoke free for three years now. Where I live a pack of cigarettes cost over $7.00 I just could not afford to keep smoking. One thing that made it easier for me was that my wife has never smoked, and she would not allow me to smoke in my own home. After a while I was tired of standing outside my home in the freezing Wisconsin winters.

I hope in time you will decide to give it a try. I know if you put your mind to it, and are determined, you will be successful!!

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/28/2009 8:39 PM (GMT -6)   
achievinggrace said...
Excellent subject Cheezhead.
I contracted Lyme disease when I was 24 and finally got treatment when I was 48. Those years were a gradual (unnoticable to others) descent into a personal hell. After 18 months of treatment I see many things in a totally different way. I appreciate how strong I am, having done all that I have while fighting Lyme as well. I really understand the dark road into mental illness and feel so much more compassion for those suffering from that.

Because of this disease my love and devotion for my husband has deepened. Even when I was at my worst he did not think it was me, he thought there was a chemical or physical problem. His faith in me did not waiver.

Lyme disease is like climbing your own personal mountain, after you're done, you feel like nothing else is all that difficult.

And I take nothing for granted.


You are very fortunate to have a husband that is as devoted as yours. Many people with Lyme, and other chronic illnesses, do not have significant others who can grasp how these conditions can affect their partners. Until I finally was diagnosed with chronic Lyme disease, I had spent over a year going from doctor to doctor, procedure to procedure, and bills, after bills. My wife was having a difficult time understanding how I could be sick, and the medical establishment could not figure it out. She started to think I was becoming a hypochondriac. As more of our finances were being spent on medical bills, the more stressed our relationship became. At least now with a diagnosis she has become more understanding.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/28/2009 8:44 PM (GMT -6)   
Deejavu said...
Yes, that's great that you quit smoking! I still smoke, yeah, I'm bad! Didn't have to give up alcohol since I was already a recovering alcoholic for 25 years now..


Having lyme also gave me so much compassion for others and trying to help people.. I truly believe that if a person has never experienced chronic lyme, they could never understand it no matter how much information one gives them.. Even to this day I don't dare mention the word "lyme" to my family because they didn't get it when I was sick and they still don't get it.. I'm glad that I get it!



Denise



I totally understand why you don't bother trying to help other understand this disease. Unless you have experienced it yourself, there is now way to explain the complexity of this disease.

At least it's good to know that others here.....get it!!

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/28/2009 9:00 PM (GMT -6)   
Willowrose said...
Nicely put, achievinggrace. I, too, have experienced a deepening of devotion and love with my husband who, like yours, has always believed me and believed in me even when the doctors were saying nothing was wrong. That kind of loyalty is priceless. Like you, I've had Lyme undiagnosed for years, and though my health was deteriorating, I accomplished a lot. In a glass-half-empty mode I've wondered how much more I could have done had I not been continually battling health problems, but looking from the other side, I appreciate how strong my body is to have taken me this far when there were so many dastardly microorganisms accosting it. That goes for my mind, too. Lyme and the all-permeating pain it has bestowed on me certainly leaves me empathetic and compassionate. We never know someone else's experience. Understanding how someone can look so healthy, act so "normal," and yet be so hideously in pain has left me open to interpreting kindly and generously others' concerns and complaints about their health. In part, I learned that from how others responded to me when I was at my worst; the "get over it" people left me feeling misunderstood and further separated from others. Those who even for a moment imparted a kind word or a concerned glance affirmed me and my experience and made my world a better place. Forever more it is my mission to pass that on to others so that I, too, can help to make some else's experience a little more bearable.

When my late husband was dying, he wrote a book and in the beginning he made a comment that he was "fortunate to have a serious illness" because of what he'd learned and how it changed his perspective about people and experience. At the time, though I understood it intellectually, I didn't really get it. How could he, constantly in pain and pleagued with a plethora of horrible maladies, feel fortunate because of it? Now I'm starting to understand. Because of Lyme my priorities are realigned, I'm more focused, and I am far more thoughtful of others and far less judgmental. I'm not sure I am yet at a point where I would say it has been "worth it." Given the choice, I think I would still elect to have never been so sick, and to have lived my life unencumbered and in ignorance of the torture Lyme can bring. But, as long as I'm here, it is good to recognize that there are positives, and the positives are significant. Thanks, Cheezhead, for a great thread.

I look forward to a day when, like achievinggrace, I can cast an "after you're done" eye to the Lyme experience. That will be lovely.

Rose


Thank you for your response Rose, You have a talent with words. The thing that struck me the most in your response was the " get over it" subject that I myself have faced. The single biggest Lyme rage moment I had was when my wife uttered this phrase to me "get over it" I lost it.....after yelling, and crying for an hour I told her I wish I could just "get over it"

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 12/29/2009 10:19 AM (GMT -6)   
My Lyme journey has taught me a lot about health and the human body that I probably would have not been as interested in learning had I not needed to find answers about my own health.

I think also that my Lyme journey may have contributed to my meeting my husband (through mutual friends of ours) - if we both hadn't had health issues, we may not have connected so strongly when we first met. He is the love of my life, my soulmate. He has stood by me through almost 11 years of struggling with my health, numerous doctors, frustrations, etc. He has taught me patience, perseverance, and loved me through some of the most horrible Lyme crud.

And I think my Lyme journey has also strengthened my faith (Christian).
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1335
   Posted 12/29/2009 2:09 PM (GMT -6)   
If I never got lyme, I would never have moved home after college and left my job at the time to stay home and get well. Then when I felt better I went to work part time for a Real Estate Firm where I went on to get my real estate license. When that job ended, I was unemployed with my own apartment and needed to find work. I went to work for a mortgage company where I made some of my closest friends to date and 4 months after I started, my future husband walked through the doors of my work and we have been together ever since (that was 7 years ago). We have one beautiful daughter, 21 months old, and another baby on the way (just newly pregnant).
 
So yes, lyme disease took away a lot of my 20's when I should have been out with friends, having fun, but in the long run, had it never have happened, I wouldn't know just how strong I am and just how blessed life can be sometimes. Everything happens for a reason and takes us on the journey we were supposed to go on. Who knows where I would have ended up had it never happened.
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/29/2009 5:22 PM (GMT -6)   
I think I've learned more negative things than positive. Like how cruel people are and how the people you thought were your friends forever, abandon you in your time of need. There's a lot more negative things but that's not what this post is about, sooooo I will concentrate on the positive.

I've learned to appreciate the little things and life and not take anything for granted....like how our bodies are so perfectly made and how every organ, vein, etc. has a purpose. I've learned to slow down and enjoy the sun, rain, birds singing, etc. I've learned that my husband has a lot of patience because I wouldn't have stayed with me, lol.

That's all I can think of now. There's more though. I guess I was trying to avoid this post because I've had a lot of negative things happen to me for the past few months and I'm a tad bit bitter and angry at the moment.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


phillypina
Regular Member


Date Joined Oct 2006
Total Posts : 308
   Posted 12/29/2009 7:23 PM (GMT -6)   
I thank God for guiding me towards alternative treatments for lyme disease.  Lyme has positively influenced my life in that has changed my perspective on the power of good nutrition, a  healthy lifestyle, the power of positive thinking, and opened my mind to the many natural and alternative treatments and resources available.  Knowledge is power.  In that I have renewed my passion for health education, medicine, and helping people.

 


mustangfiveohhh
New Member


Date Joined Dec 2009
Total Posts : 7
   Posted 12/30/2009 4:15 AM (GMT -6)   
I love this topic!
Besides the things already mentioned (i.e. compassion, appreciating those who have stuck by us and never quit believing we were sick and not just attention seekers, knowing all people have a "story" despite their appearance, living a cleaner, healthier lifestyle, appreciating our bodies' abilities to fight and repair, learning what is important in life and what is not) I would like to add that my children have grown up with these traits, too. They see the hurt and illness in others. Their compassion comes from dealing with all my problems and I have no doubt they could easily have grown up quite differently. I was the impatient "just get over it" type. I am ashamed of that and oh, so grateful I have changed and especially thankful that change came in time to affect a change in them!
The older I get the more I value the idioms I have heard all my life. In this case look what the "school of hard knocks" has taught us all!
MG

Deejavu
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Date Joined Aug 2005
Total Posts : 4282
   Posted 12/30/2009 6:22 AM (GMT -6)   
Some of these posts brought tears to my eyes, happy tears for those who found love and support and some sad tears for those who have been hurt.   Yes, I was hurt too because I wanted my family and friends to "understand" lyme disease and they never did.   So as I stated above, I stopped trying to make people understand. 
 
Perhaps I would have never met my boyfriend if I didn't get lyme as I probably would have still been married to my ex-husband but once I did meet him I gave him a really hard time!  Lyme isolated me for so many years that I became used to being alone and fending for myself so if someone "threatened" my isolated world (even when I was totally better), I didn't welcome those people for fear.   So when I met my boyfriend, I kept breaking off the relationship with him only to go back with him, etc.   He never gave up on me and fought hard to get me back in his life which he succeeded at!  All because I was afraid after living alone for so many years. 
 
I forgot to mention that if I didn't get lyme, never in my life would I have wanted to learn about detoxing, eating healthy, learning about supplements, exercise (I was never into exercise before), mustard foot baths, and to top that all off, coffee enema's??   I will never forget the first time I heard about those enema's and I said to myself "no way!!).   I had no clue what those enema's had to do with chronic lyme and I most certainly was NOT going to put a nozzle in my butt!  But lo and behold, after reading so much I finally had the courage to do it and I was proud!  LOL!   So I learned so much during my journey not only about this disease but also about myself.   And I believe I am a much better person for it all.
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/30/2009 4:28 PM (GMT -6)   
mustangfiveohhh said...
I love this topic!
Besides the things already mentioned (i.e. compassion, appreciating those who have stuck by us and never quit believing we were sick and not just attention seekers, knowing all people have a "story" despite their appearance, living a cleaner, healthier lifestyle, appreciating our bodies' abilities to fight and repair, learning what is important in life and what is not) I would like to add that my children have grown up with these traits, too. They see the hurt and illness in others. Their compassion comes from dealing with all my problems and I have no doubt they could easily have grown up quite differently. I was the impatient "just get over it" type. I am ashamed of that and oh, so grateful I have changed and especially thankful that change came in time to affect a change in them!
The older I get the more I value the idioms I have heard all my life. In this case look what the "school of hard knocks" has taught us all!
MG


Just reading your response made me feel good. When I started this tread I knew it would make people think what the heck is this guy talking about...some thing good coming from Lyme?? I think your response, along with others here have shown that even when affected by one of the worst, and misunderstood diseases in history, we will adapt, overcome and in the long run be better people because of it. Just being here to support and help others is proof of that. Your childen are fortunate to have you for a parent.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/30/2009 6:17 PM (GMT -6)   
Denise,

What a great, heart touching post. That definitely made me "giggle" inside. Thanks for that.


Cheezhead: You are so right and I should have been a bit more positive. I had a very bad few months and with my daddy passing away...he was the only person that understood my sickness, it's been hard. I apologize for being so negative because there are many things to be thankful for.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/30/2009 8:20 PM (GMT -6)   
CajunGrl said...
Denise,

What a great, heart touching post. That definitely made me "giggle" inside. Thanks for that.


Cheezhead: You are so right and I should have been a bit more positive. I had a very bad few months and with my daddy passing away...he was the only person that understood my sickness, it's been hard. I apologize for being so negative because there are many things to be thankful for.


Hey CajunGrl,
That's OK.....I am so sorry about the loss of your father. It has to be difficult not to have his unwavering support. I know it has only been a short time, but I hope your heart will heal in due time. You have been doing a great job of moderating this forum, thank you for supporting us all.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/30/2009 8:34 PM (GMT -6)   
I appreciate that. Thank you.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 1/1/2010 12:20 PM (GMT -6)   
No - Nothing I couldn't have achieved without 10+ years of He11.
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 1/2/2010 5:23 PM (GMT -6)   
CG,
 
Glad I was about to make you giggle!!  LOL!  I just realized how my "lo and behold" statement sounded!  rolleyes eyes yeah Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/2/2010 7:35 PM (GMT -6)   
LOL, I had to go back and read but I "get" it now! Phew, I'm slow tonight.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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