posted
A couple of weeks ago I read two separate posts from young people suffering from Lyme who were really struggling with convincing their families that their disease was real.
I offered to write a personal letter to their families highlighting what we have gone through as a family for the past 5+ years (my daughter suffers from Lyme and 3 co-infections).
One of the posters to whom I sent the letter has asked that I post it here in the General forum. My only reason for doing so is in the hope that someone else might benefit from our experience and be able to share our story with their family.
I've included the letter below (I deleted all the personal references from the original letter).
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I'm not really sure where to start so I'll just write what I know.
My name is XXXXXX. I am a retired SMSgt (4 years in the Seabees, 21 years USAF), living in southern California. I'm 59 years old, a veteran of two tours in Vietnam and a Christian man with a family that is hurting.
I'm not trying to sell anything and I'm certainly not trying to get involved in anyone's family business.
I just know that my family has been through a nightmare for the past 5+ years and I thought that if I could help anyone else by simply writing a letter, I would certainly try to do so.
I hope that you will take the time to read the following and see if maybe your family is experiencing some of the same things we have.
My daughter, Nicole (28 years old), has Chronic Lyme disease. She suffers every day from pain in most of her joints and muscles.
She also gets migraines so severe that she's unable to get out of bed for days at a time. She's had flu-like symptoms so bad she's been unable to keep much on her stomach for weeks at a time.
She's experienced time where she's been unable to speak clearly and she has problems with her short term memory.
This has been going on since January 2001.
Nicole was and is a very bright, engaging young woman who is now stuck living with her parents.
She has been so ill that she was forced to move back home and that is probably the worse thing about this illness, she's just not capable of taking care of herself.
Her first family doctor diagnosed her with Fibromyalgia Syndrome, Chronic Fatigue/Chronic Pain Syndromes.
The typical treatment for these ``diseases'' was to prescribe pain medications, antidepressants and anti-anxiety medications. Of course this only treated the symptoms, not the cause.
Nicole then began the rounds of being tested by all of the specialists. For a period of more than 4 years she saw so many different doctors we've lost count.
She's been to a rheumatologist, a cardiologist, two neurologists, a psychiatrist, a psychologist and two different family doctors; you name it she's seen one.
She's had at least six MRIs of her brain, two spinal taps, so many x-rays we've lost count.
She's been to the Emergency Room of our local hospital so many times that they know her by her first name.
She's been admitted to the hospital on three separate occasions for more than a week each time.
She's had so much blood drawn that she no longer even cringes when they stick her with a needle.
It wasn't until we were referred to a doctor in northern California that we finally found out what she has.
She and I made the 9 hour drive up the coast to see this doctor. He spent more than 3 hours just talking with us. He then drew blood and had it sent to a laboratory that specializes in testing for Lyme disease.
The results were just what he predicted, she tested positive for Lyme disease and three other co-infections.
All of the bacteria in her body came from a tick bite. In fact we even remember when she was bitten.
In 1996, Nicole and several of her friends went camping in the mountains above Ojai California.
When she returned four days later, she discovered a fully engorged tick in her scalp. We didn't think much about it.
We now know what it has done to her.
Nicole has been taking several courses of oral antibiotics from late 2005 until June of 2006.
In June she had an intravenous tube placed in her arm, called a PICC line. She now infuses antibiotics through the PICC line directly into her blood system.
This IV infusion has made a world of difference.
She no longer needs her wheelchair, she is able to get out of her room for about 6 hours every day and her ability to communicate with us and her doctors has improved tremendously.
We're starting to get our child back.
I wanted to tell you that when she first became ill I thought it was just her imagination. I thought she was just being lazy.
She would call me from work and say she was just too sick to drive home. I'd go to her job and drive her to her apartment.
I wasn't very patient with her. I just didn't understand.
The cause of the pain and other neurological symptoms she goes through doesn't show up on an x-ray or in routine blood tests.
She doesn't look sick from the outside. It was an extremely rough time between her and I the first four years of her illness.
I am probably the world's biggest cynic (must be the military training).
If I couldn't see the problem, I didn't believe it existed.
How could my daughter be so sick and not have it show up on any routine blood test or x-ray.
I assumed she was either faking it or like I said, just lazy.
The real problem with this disease is that there just isn't much known about how it works in the body. In fact many doctors don't even believe it is real.
Most health insurance companies won't even cover the procedures needed to treat this nightmare.
We've had to pay for about two-thirds of her treatments out of our savings.
Let me tell you, it's been a tough ride. I've gone to almost all of her doctor's appointments over the past five years.
I've listened to them tell her nothing is wrong. I've seen the disappointment on her face, especially when she and I have had arguments about her illness.
I've not been the easiest person to get along with, in fact, at times I've been a real jerk.
Her mother and I have watched and listened when she has been so sick she can't get up off the bathroom floor for hours.
We've watched as the paramedics have come into our home to take her to the hospital.
We've watched as she has become so ill she has to have a wheelchair to even get to her doctor's appointments.
I've done all the research I can over the internet and from books.
Lyme disease is real.
I'm not sure where you and your family are with this problem. I just know it's been one of the toughest things I've ever had to face.
Well that's about it. That's our story. I hope I've been able to convey to you and your family how real this thing is.
It wasn't until I saw a difference the antibiotics have made for my daughter that I finally became convinced that she has been suffering beyond anything I could have imagined.
Maybe I just didn't want to admit I couldn't fix it, so it couldn't be real.
I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.
I'm convinced we will lick this thing.
I only hope that others can read this and understand that someone else has gone through the same things as you are.
You are not alone.
If you'd like more information, one of the best sources I've found is at the LymeNet website.
I've spent many hours reading of other peoples struggles and advances on this site:
posted
I requested that lymedad post this letter. He wrote it for my father, who has been in denail about my illness for over two years. Reading the letter itslef was healing for me and I assumed others might also feel the same.
This is the sentence that hit me the most
quote: I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.
I have said this before Lymedad, but you are a special man. We all make mistakes, I can't count the number I make in a day, but your willingness to look at your actions out of love for your daughter is ..well something I repsect. We don't all get dads like you.
Thank you for posting the letter.
Posts: 628 | From the south | Registered: Dec 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by serendipity: This is the sentence that hit me the most
quote: I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.
I have said this before Lymedad, but you are a special man. We all make mistakes, I can't count the number I make in a day, but your willingness to look at your actions out of love for your daughter is ..well something I repsect. We don't all get dads like you.
Thank you for posting the letter.
That was the thing that hit me most too Ser. Thanks for asking for this to be posted.
I've got the tears streaming down my face again.
Thank so much for writing and posting this Lymedad. We are all really lucky to have a Dad like you.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Your story made me cry Dad, but I knew when you first came to Lymenet that you and your family are very special....you just reaffirmed it for me
posted
Thanks to all of you. You've got to stop now, I don't want to change hat sizes.
I'm actually the lucky one. I wish you could meet my family. I'm truly a blessed man.
I have a wife who has learned to put up with me for more than 38 years and still retain her beauty and sense of humor anyway (I've dragged her all over the world and yet she's stayed beside me, go figure)!
I have a son who swells my chest with pride just to mention his name.
A daugther who has become an even more beautiful young lady despite the pain and frustration that Lyme causes.
Okay enough already. You all take care and thanks again for your sentiments.
Posts: 681 | From California | Registered: Oct 2005
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posted
Lymedad, your last post put tears in my eyes again.
Your entire family is fortunate to have each other, and you will all be in my prayers.
Posts: 628 | From the south | Registered: Dec 2005
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bettyg
Unregistered
posted
Dad, you have been blessed with a special gift of expressing your thoughts/feelings into words deep within your heart!
Thank you so much for sharing your powerful story from a Dad's viewpoint of being a skeptic.
Those under you in the military were BLESSED to have you even if you are not to show emotions there! Your heart reaches the moon; it's unlimited.
I would love to see you do 2 more things with your letter; 1 is easy. Please copy your link here and paste it to a NEW POST in TREEPATROL'S NEWBIE LINKS so it can be read by thousands more to come online.
It would be great in the BUT YOU LOOK SO GOOD area of explaining things to family members.
2nd suggestion is emailing your letter to DEAR ABBEY where NATIONWIDE lyme families can benefit from your wisdom, courage, and learning to give support to your daughter who you initially thought was faking it and lazy!
You'd overwhelm the nation with endless tears, and be sure to give the LDA website, and BOTH web petition sites.
Thanks for your consideration Dad; we are truly blessed to have you, and your daughter HAS forgiven you. You're going to every LLMD appt; and providing her 24/7 support and unconditional love. YOU ROCK DAD!
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Thanks so much for your input. I really had no idea this type of letter would touch so many people.
I will do as you suggest and include it in the links and websites you've recommended.
My only other thought is that I'd like to have you talk with some of the young people that worked for me in the military.
I'd be quite surprised if they shared many of your sentiments.
However, I enjoyed managing and leading young people and I am proud to have served with some of the brightest and most motivated young people our country has to offer.
Posts: 681 | From California | Registered: Oct 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Lyme Dad, You are the 'dad' I could only 'wish' to be!!!!
Nuff said cuz I B --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by just don: Lyme Dad, You are the 'dad' I could only 'wish' to be!!!!
Nuff said cuz I B --just don--
Don, You needn't wish it, you are it.
TBF
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Some times it hurts so deeply because so many people just don't understand. Or they say/think you are crazy.
It is nice to hear from someone who felt that way and now knows how aweful this disease really is.
It silently ruins so many lives. Those infected and those close to the ones who are.
Thank you again!! Posts: 240 | From MA | Registered: Nov 2006
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bettyg
Unregistered
posted
Dad, thanks for agreeing to do both of my suggestions!
I look forward to reading Dear Abbey someday, and your letter will be in there HELPING thousands of children, and educating the public about lyme disease.
Perhaps all 3 of my national guard brothers might learn something from your comments, and finally give me SUPPORT and acknowledgement of my many illnesses due to lyme these past 36 years!
Yep, they are GRUFF too, so I would agree your subordinates would NOT agree to what I stated earlier, but WE LOVE YOU LYMEDAD!
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posted
Lymedad, please do go a bit further and put this in places, like Dear Abbey, where it will be seen by many. It says so much that needs to be said to people everywhere.
I am sure that there are many people who will better be able to explain their illness to their families, thanks to your tender words.
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
[ 02. December 2006, 10:44 PM: Message edited by: savebabe ]
Posts: 1603 | From ny | Registered: Aug 2006
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bettyg
Unregistered
posted
lymedad, I'm thinking of copying your letter and giving to all 3 of my military career brothers, who have given me NO SUPPORT or understanding during my entire 36 years of this painful disease!
Thinking of handing the letter as I leave saying read this at home later on after everyone is gone, and instead of daughter; please show sister Betty here!
What do you all think of this and especially lymedad since he was a career militay man too.
Since they have shown me no support, I have not gone to my sibling's xmas gathering the last 2 years. I'm tired of "be kind to Betty for a couple of hours today" AND ignore me the rest of the year.
plus my EXTREME SENSITIVITIES TO:
* lights, glare, and reflections and they love having BRIGHT lights on everywhere;
* chemicals in air/on relatives: perfume, aftershave, the smoke on smoker's clothing,
* food allergies: can't eat wheat/rye and dairy products: cow's milk, cheeses, egg whites, and garlic
* plus being diabetic and all that homemade candy!
* my will power isn't 100%; I try but I do NOT succeed.
* ever since my older bro, 59, sent me a nasty email saying he didn't like how I said things, they were for my agenda, and I did NOT CONTRIBUTE TO SOCIETY!; I've written him off completely except for his son's marriage 1 wk. ago.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I haven't read your letter in awhile. But, I do recall when I first read it how impressed I was with your daughter.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I have no problem with you sharing my writing with anyone. In fact if you wish, I'll write a letter to your brothers personally.
I know a couple of things for sure.
1. Unless you've experienced combat for yourself, you'll never be able to totally explain to someone else how it feels.
2. Unless you've faced this disease personally, you'll never be able to totally explain to someone else how it feels.
Having been through both; they are truly unique experiences.
At least being in combat I did without it affecting my family directly.
In addition, I volunteered for my service in Vietnam - both times (I wasn't all that bright as a young man).
My daughter did not volunteer to contract Lyme disease - big difference in my mind.
Having to watch a loved-one suffer, not only with the physical pain, but with the frustration of others misunderstanding her disease is much the worse of the two.
Let me know what you need, I'll do what I can.
You hang in there BG.
Posts: 681 | From California | Registered: Oct 2005
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bettyg
Unregistered
posted
Lymedad, I will accept your generous offer since it's coming from a military background to other military backgrounds!
I will send you a PM; God bless you Dad! Can't keep these tears from falling down my face from the gratitude my heart feels for your kindness to me/others on this board!
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tailz
Unregistered
posted
Lymedad - I wish were my dad. That's my story only mine is 41 years long and not over yet. I was accused of being lazy, wanting attention - told to 'snap out of it' - 'get a job'. I just want to cry anymore.
What coinfections did she have? So far mine are negative - I don't believe them.
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posted
that is a really well written letter. it should be published elsewhere too. i wish my primary doctor could read it to, and make him think.
i'm 29, and i'm the daughter who has had to move back home with the parents because i'm too sick to take care of myself. i'm lucky that i have my family to help. my dad really doesn't understand the disease, but my sister has been researching it day in and day out.
Posts: 98 | From San Francisco | Registered: Oct 2006
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posted
It took me awhile to find this letter. I didn't even know that it exsisted until I read a few posts and others were referring to it. I did find it and WOW!! My father is also a retired Military, SSGT of the USAF, he retired after 20 years, and he reminds me of alot like you. He also has a hard time understanding what I go through and his wife, my step-mom just keeps on telling me to stop seeing doctors because if they haven't found anything yet, than they never will! So stop faking, get up, go back to work, help out your family, don't make your husband do all the work, and most of all, you need to get off your lazy butt and go back to work. I posted a Forum in "General Support-Help Somewhere", you are welcome to read it, it's a short version of what I'm going through. Your letter brought tears to my eyes, and made me get goosebumps everywhere. I thought I was reading my story, but it's your's and you are a very brave person to admit that you were wrong. You daughter will forgive you, it might take awhile, but knowing that she has your FULL-SUPPORT with this horrible disease is a huge start. Keep your head up things will heal and your daughter will always know that she has a wonderful dad who will always be there for her, regardless of what happens or what someone might say!
I wish that everybody who suffered had the love and support that you are giving your daughter!
I wish you and your family the best
[ 25. April 2007, 08:41 AM: Message edited by: Mom of 3 ]
-------------------- Best Friends Are The Siblings God Forgot To Give Us!! Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006
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posted
Thank you for posting this letter to families! I read it with tears. I showed it to DH & he said, "That is an EXCELLENT letter! Save that!"
Lymedad, I really appreciate your openness and willingness to share what you've learned on this journey of pain & suffering. I'm sure this will help many others and spare them all the hurt.
God bless you!
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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bettyg
Unregistered
posted
hey gang,
thanks for finding and bringing this one back up where it belongs!
lymedad; consider that letter written to my 3 military brothers; i plan on emailing it to one of them this week! it was heartfelt written just like this one was. hubby really enjoyed reading it as well.
thanks for sharing this special gift you have of expressing yourself and getting thru to others who were like you USED to be.
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I've written him off completely except for his son's marriage 1 wk. ago.
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