posted
Okay, DISCLAIMER: this post may turn out to be pretty negative me-venting time so if you don't want to hear it I understand...please stop reading here.
I haven't quite received the diagnosis of Lyme yet but it pretty much goes without speaking...I have TONS of the symptoms(they started 8 months ago) and all the docs think it's that but we're trying (wish me luck) to get a positive test so the insurance will be more cooperative. sigh. here in utah Lyme is considered more a myth than real...not that it's all that different anywhere else from what I've read ;p
Anyways...alot of my friends and fam are having a lot of trouble understanding and dealing with all of this--I'm was only 17 when all this started...missed out on half my senior year of high school and am now trying to figure out what the heck to do with college--and its really weird for both me and them. Which is understandable. I just get frustrated sometimes because it's like they're bitter at me for being sick...like it's my fault. I feel like what I need from them is understanding and support and what I'm getting is the exact opposite and it hurts. Frankly I don't even know myself what to do with this...it would help if I had a few people on my side to help me figure that out.
Anyways alot of friends and fam say things like 'when you get better we'll have fun again' or 'if you loved me you'd get better' or (my personal favorite of the week which really makes me laugh more than anything because it came from my 12yr old neice) 'I liked you better when you weren't sick all the time' I have trouble with these statements (all except the third because, like i said, it just makes me laugh...maybe I liked me better then too. hmmm....something to think about.) Of course I want to get better but I really need to feel like even if I don't I'll still be accepted among those I love. It's like everybody's sitting and waiting for me to 'be normal' before they can care about me again...instead of caring for and supporting me now when I need it the most. I really don't know what to do with it all and get pretty down and overwhelmed at times...any suggestions?
And then there's my own issues dealing with the question "What if I don't get better?" I really don't know....do I plan on college, do I plan on work? Do I need to tell the college department I'm disabled in certain aspects or can I hope for a response to treatment before that's neccessarry? Do I start up physical activity again, do I take up old hobbies? (Prior to LYME I was heavily involved in everything theater but especially musical theater...I LOVE to act sing and dance) Or am I looking at a lifetime of sitting in bed, only up to a walk around the block each day, dependant on my parents or whoever I end up marrying IF anybody is strong enough to marry me with all that in the bundle? And if that's the case...how do I handle it? I'm 17 FOR GOODNESS SAKES!!! I'm supposed to be out there learning, working, having fun...my life is supposed to be just beggining...not coming to a brutal TRAFFIC JAM!!! I just don't know how to make life LIVING when I'm stuck on a couch or in my bed most of the time...I don't know if I'm that strong or that wise. It all scares me so much...I don't know if I'm strong enough, wise enough, good enough, old enough, mature enough for this!!!
So if any of you have the time/heart/strength to read this essay of a venting session let me know what you've learned in your experience. I'm new to this and very open to anything all of you wise owls can teach me. Thanks bunches!
love from UT
[ 22. June 2006, 03:00 AM: Message edited by: jggrl ]
Posts: 89 | From UT | Registered: Jun 2006
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I am very new to this whole Lyme thing too (I've been ill a little less time than you), so I don't have a lot of advice to offer.
But you are most certainly NOT alone in the way you are feeling. I have the same feelings all the time and ask myself that same question every day.
I get the "when you are better were gonna..." all the time too. It is meant out of love and to show support, but most of the time it makes me soooo sad because it scares me to think that I may never have those things again if I don't recover.
I wish I could offer more support, but as I said, I too have just begun this battle. Just know you are not alone.
I wish you tons of luck in treating your Lyme. Take care - Greg
Posts: 17 | From Ventura, CA | Registered: May 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Good Morning and Welcome-
Most of us have been where you are right now, and it's no fun. The time between realizing you have lyme and making progress with a treatment was the toughest for me. Herxing becomes a good thing. It means you CAN get better.
It would be good if you had one relative that supports you 100%. My son and I became sick about the same time, but I was too sick to know he was sick too! Talk about guilt. Anyway 4 years later we are much better.
We were pretty isolated from friends and family, but sleeping 14-16 hours a day will do that to you.
He is 17 now and plans on college. He should be accepted at the college University closest to our home, 27 miles away. Our plan is for him to go full time if he is well and part time, with me driving if need be, if he can't handle a full load. They also have cyber classes.
I don't plan on telling the University he is operating under a 504 until after he is accepted. At the open house they were very possitive about working with students with disabilities. But we shall see.
Taking charge of your wellness is the best thing you can do to empower yourself. Improving your diet and exercising as best you can are things you can do today to take charge of your future.
The sad reality, as we learned, it is rare to find someone who will be there for you 100% My parents don't get it still.
Each day is a new beginning, some days you will be able to do things with your friends!
posted
JG, I had lyme 15 years ago with no symptoms, was treated for one month and it came back a year ago full force. We recently found out my 10 year old daughter has it and I worry what her life will be like. My only advise is to get to the best LLMD you can. Follow all their advise, and take it one day at a time. If you don't everything will certainly feel overwhelming. Since you don't have support this is a great way to talk to other people in the same situation. Good luck!
Posts: 82 | From east hampton ny | Registered: Jun 2006
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quote:Originally posted by g-mon: I wish I could offer more support, but as I said, I too have just begun this battle.
No worries Greg! that's tons of needed support in my eyes!
Thanks to all of you....once again sorry for the venting post, but I guess you know how it is Love to you all and i'm so grateful for your help and glad i found this place where i can talk with people who truly understand.
Loves!
Posts: 89 | From UT | Registered: Jun 2006
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posted
HI-- I am FROM utah too-grew up there and still consider it my home. May have even got the bite there--but now I think I got it in NM. Again, noone believes these nasty ticks are here, I don't really know anyone in person that has it--other than a doctor here (but there are 3 others from Utah that post on this board) and I wish I could say I was out there educating averyone but I haven't even told some of family in SLC--just trying to get a handle on this myself. Good for you for talking to your family about it--even the little ones-- but I knwo taht it posts an extra problems for us, we have a problem that none we know really recognizes or understands! Although I am willing to be plenty of people in the West unkowingly have tick born illnesses, there are actaully not that many of of us that know we do.
I am more than twice your age, but I feel a lot of your same feelings.
But you have several really good things going for you,
you are getting a diagnosis fairly early on --move on it! make sure you have a good doctor (post online it you need to get help wiht this) and work with him/her. are you getting treatment now?
your age--you are young I think that will work for you--young bodies seem to bouce back better with a lot of things.
Your parents can help take care of you, for now--I know you are at an age where you need independance but this is a big plus also right now. Make sure they work with you to get good health care, good food, and rest etc.
When I was in grad school in Colorado, (I also went to the U of U) my grad practicum involved helping undergrads get through school. I assessed a young lady who got lyme--in conneticut of course, and was able to get her reasonable accomodations through the ADA to help her with school--these are not big things, just being able to take untimed tests, if need be preferential seating, etc, modifications in your classes to help you through school, less of a classload... which could be specific to your major--and if you SHOW THE NEED it may be required by law and for the most part none of the other students are likely to even know you are getting this help. This may not be where you are on things right now, but do know taht many things are possible in terms of getting through school!
If you are interested in learning more, maybe I could help you find out more about this. A friend of mine got through a challenging grad program after a stroke, with this type of support, and she is as good at her profession as anyone--perhaps better because she has more empathy!
But this can wait until you feel better inside and healthier, but I think you have some real options.
You can pm, if you'd like. (Also, I am on a search for all the resoucres out there, or not out there in Utah and Colorado, so let me knwo of any info you might have about doctors, treatment etc.--please)
take best of care. I'm rooting for you!
jif
Posts: 208 | From Santa Fe | Registered: May 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey there and welcome,
Vent away that is what we are here for to listen.
Gosh do I know how you feel.
It was tough on my parents to understand my illness when i first got so sick. I was in and out of the ER at all hours of the morning.
And when nothing was found it was my fault! go figure. They have gotten a bit better as they went to the appointments with me and learned a bit about it.
so that maybe an option for you to take someone along to your first appointment, so they can hear how bad LD is.
Ive also heard from friends - you just need happy pills and a drink (yea i wish)...they ask me questions like 'what are you going to do' why arent you better. I wish i knew those answers...i feel they should be saying....hey do you need anything at the store etc.
Ive learned to do my own thing...at my own pace in my own time.
I have come far..and I know that i have and that is all that matters. I still have a long way to go to get my body back.
It will be a year for me in August that i got so ill. I lost my job because they just didnt get it and really it is there loss totally.
there will come a time in your lyme journey where you will learn acceptance and will put all your energy into getting well.
Hang in there
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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quote:Originally posted by jif: Your parents can help take care of you, for now
Yeah that is a plus, it's just that I feel so guilty having them care for me all the time....I feel like this is the time when I should be working to pay them back for all the years of care they've already given me. It's hard on them...my mom has suffered with what we think might be FM (and also depression) for almost all her life and it's so hard for me to watch her work so hard caring for me when I feel like I should be the one working to care for her! She's been the best at understanding all of this...she can relate a little because she's had her own problems...i just wish there was a way I could be there for her more.
Thanks so much again for the advice...there's so much to learn and I'm ready to learn it!
Optimistick your post was really helpful, I'll put those suggestions into action. You are all so helpful and supportive--thank you.
loves
Posts: 89 | From UT | Registered: Jun 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi,
I am old now (29) but I have been sick with lyme since at least age ten. So I've been there. I wasn't diagnosed for a long time so I became disabled.
I know what mean about the guilt over people taking care of you. I have been disabled since 2000 and my mom and dad took care of me till they divorced now I live with my mom.
I should have my own house and life and be able to live on my own - But this illness has made that impossible at this point...
I am always assured that I am not a burden but there has been times where I couldn't walk or anything - so I REALLY understand the guilt issues.
The only thing that helps with that somewhat is knowing and believing that someday I will be well and if they need my help I will be there for them.
cantgiveup said -there will come a time in your lyme journey where you will learn acceptance and will put all your energy into getting well.
I found this to be very true. I went through the stages of grief - and I have been at the last one, acceptance, for quite some time.
I also wanted to tell you your mom may want to think about seeing a lyme literate dr for an evaluation because Fibro symptoms and depression can both occur with lyme.
I hope you also have a good lyme literate dr. for yourself. You need one.
Treatment has to be strong enough, long enough, then there is the possiblity of coinfections ect.
Lyme is complicated.
I am lucky my family has been very understanding and supportive. I lost friends though - and I am ok with that. If you have friends that make you constantly feel bad about being sick I would say dont feel obligated to keep them.
I dont think toxic people help us heal.
We have all gone through the what if I never get better. I think it is part of the process.
Look at this obstacle not as tho it 'happened to you' -- but as tho you chose it. You chose this because there's something of great value to you in this journey.. You have to find out what that is. Knowing that you 'chose' this tranforms everything and frees you to be able to overcome.
What is it you chose it for - what's here that you need to learn?
Think outside the box, with constant actions toward wellness.
Accept, then act.
Think of these obstacles as your friend, NEVER, ever as your enemy.
Walk with it, never against it.
If you can do that, this will truly transform your life and the right steps to take will appear before you.
It's hard work in the beginning, but you have to consistantly call on this now. Don't let the deamons in the door.
Every time you begin to feel hopeless, or 'less than' - or wronged, or doomed, or scared..
STOP, look at it. You have to man the gates. Don't let the deamons in the door.
Stop and look at those feelings of doom. What is it? What is it's color? Where does it lie? Where does it go?
You'll find yourself looking around and realizing they are not really there.
Acknowledge it, and let it go. Trust. Call upon a higher power often and freely, whatever it may be. Don't ask or beg 'it' to help you - you are not in desperation, allow that power to come through you. Call upon it's strength and give things over to it.. it takes allot of heart and allot of trust.
There are no accidents. Everything that's happening is as it should be. Walk with it.
Accept this situation fully.... welcome it -- then act.
Answers will come. If you let yourself feel fear, or fight ghosts that are not there (like the one that says you won't get well) -- you will miss the steps you need to take.
They are there, you can get well -- don't let the deamons in the door.
See yourself as well as often as you can, and open your mind to take steps to care for yourself.
When you can do this, you'll be on your way, and nothing anyone else says or does will make a difference at all.
This is along the lines of something someone told me, that I am using right now in dealing with a very, very difficult situation. It has been a mindset that is tremndously valuable to me.
Mo
[ 22. June 2006, 06:48 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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Carol B
Unregistered
posted
Supposedly I am a mature adult ,and I had the same reaction as you when first diagnosed with Lyme, very apprehensive about the future, and overwhelmed by the magnitude of treatment.
But after just three months I can feel and see improvement-then there are days like today when I just have to give in and accept I have lyme disease-so if I can't do anything because I am too tired- I go to bed.
Tomorrow is another day- another step closer to wellness. Even though it all feels very intense right now, when I look back on the whole of my life this will just be a blip on the radar.
Maybe a really big blip-more like a blimp. Even though it has changed the course of my life I have to go with the flow. Fighting the current will only exhaust my energy and slow my progress.
Please repeat these words back to me when I get impatient and lose perspective. Thanks
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
You expressed yourself very well, and I think the information people gave you is fantastic. Look in every nook and cranny of this website and it will give you hope.
I am the mother of an 18 year old who was diagnosed with Bartonella six months ago. She is in the thick of the treatment. The other day, for one hour, she said, "I feel fine". I haven't heard that in years.
Antibiotics are only a part of the treatment. Probiotics to replace the good bacteria is essential. Hot baths, saunas, are great. Something to help you sleep, and something for depression may also help, as this crud gets in your brain.
And...my daughter was "diagnosed" with FM...but most Lyme docs feel it's really Lyme. Your mom may want to have a blood test.
And...as a mother, I can find no more noble place to be than serving my daughter and being by her side through this illness. As you may know...friends don't stick around too long. Life moves on for them. But, believe that your life will also be enriched by this experience.
posted
I am sorry you are feeling so low. It is wonderful that you found this place, everyone of us knows exactly how you are feeling.
It took me 5 years of feeling progressively worse, bouncing from MD to MD while getting no answers, and a lot of guilt about what my poor health was doing to my family before I finally found out what was going on.
I will tell you there is hope. I finally found a LLMD and started treatment in Dec and I am a new person. So many of my symptoms are gone, it is amazing what happens when you treat the problem rather than manage the symptoms.
There is hope.
Get your mom to be tested as well. I was dxed with Fibro on my way to finding out I had Lyme, I didn't have Fibro, it was Lyme.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Venting is totally and completely allowed here. This forum exists so we can give each other support and get through those bad days.
One thing I've learned from Lyme is that sometimes it's ok to be selfish. Sometimes, I just need to do what I need in order to get better or just make it through the day. And if that means cancelling on a friend, or not finishing a work project on time, so be it.
I've also learned the importance of not biting off more than I can chew. Now, I've had Lyme for 19 years, since I was 12. I'm 31 now. I've been an overachiever the whole darn time. But my Lyme was pretty suppressed most of that time. I'm now realizing that too much stress can really hurt the healing factor.
So, if you think starting college will be too much then wait a semester or a year. Don't make yourself sicker because you think you have to start this year.
A disclaimer that this is coming from the girl that decided to apply to law school in reaction to a fibromyalgia diagnosis. But that was a diagnosis with no help of a cure. I thought I could wake up completely disabled one day, so I needed to do school now.
With Lyme, there is hope of a cure. If you feel in your heart you are likely to get better faster without school, then delay school. You could always take courses at a community college, volunteer with a local theater group or do something else that keeps you busy but with less than full-time school.
If you are accepted into a school, the I would definitely speak with them sooner rather than later about your current health situation. They cannot be expected to provide accommodations if they do not know about your condition. There may be support systems, like support groups or counselors, that can help you with the transition. They may also have ideas you have not thought of that will make school easier on you.
Don't worry about your parents. Let them know how much you love and appreciate them. But they want you healthy. I'm sure it hurts them to see you suffer. I'm 31 and my mother flies in to see me almost once a month to go to doctor appointments with me. We are closer than we have ever been. One of the good things that has come from all of this.
I also recommend treating symptoms as well as Lyme. If you have pain, work with a specialist to control the pain. That way you can feel as good as you can feel during the treatment. It also helps give a positive outlook and boosts your immune system to feel better.
There is hope with Lyme. Remember that. You are young and your body can heal. You are on the right track.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by lucy96734: Get your mom to be tested as well. I was dxed with Fibro on my way to finding out I had Lyme, I didn't have Fibro, it was Lyme.
AMEN!!! I was dxd with FM 25 yrs ago. I wasn't dxd with Lyme until 6 yrs ago. All in all, I believe I've had Lyme since I was 8.
Get your mom tested!! I"m doing GREAT now! I know you can get well too....especially with your attitude!
posted
yeah lymetoo i did and it's great one of my friends that i've been having a particularly hard time with read it and sent me a note of sympathy...YAY. also, a bunch of friends and fam are asking about lyme and what it entails (symptoms, treatment, etc). what's the best site you know of to show them the info about Lyme? thanks.
loves!
Posts: 89 | From UT | Registered: Jun 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Guilt and fear can be exceptionally hard. I got sick in 2002 at the age of 26 and was completely incapacitated when Lyme hit me. I prayed everynight before going to bed to die because I was actually too tired to commit suicide. or I actually think I would have.
I had ( and still do obviously) three small children at home. I was working full time and had just entered college again to grab my BA. From there, it was onto law school and everything came to a wonderful screeching hault. I was to get married to a man I had met 18 months before getting sick and instead of marrying me, he had to help me live.
It took me 9 months to get diagnosed and I have been in treatment ever since June 2003. I went back to work 4 months after treatment and was still exceptionally sick, but I needed to feed my kids. I saw GREAT improvement in the third year mark, and today I am
90 percent- 95 percent better as long as I am not herxing. I Just FINALLY finished my BA ( which took me four years instead of two)
and the entire time I was sick, that perfect man that I was to marry was doing drugs right under my nose. I just threw him out last year, met someone else and we just got engaged last month.
So, somethings really did turn out good with me having lyme- I didnt marry a drug user, and I have NO plans on going to law school because I found other interests.
I'm not saying to try to find something positive in lyme. I am saying you CAN get better, you WILL get better, but it's going to take support and a whole heck of it.
I felt so guilty that I just could NOT take care of my kids. Heck, I couldnt even bathe myself at one point and my 58 year old mother and my one sister did mostly all of it for me.
Now, Im making up for lost time. My daughter had barely any teeth and could barely talk when I got sick. Now, she is outside riding her bike. yes, it hurts but
I feel reborn. I am now not afraid to do all the things I ever wanted to do, but didn't do because of fear. After getting , facing and battling lyme, I have NO fear anymore.
You mentioned your mother has FM, they think. Alot of FM is actually lyme disease. I just thought I would throw that in there. It woudl be amazing, absolutely amazing if your mother could get well with you.
Anytime you need support, there is someone here.Your life is not over. Its on pause and you can take your life back.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
'TheCrimeofLyme' thanks so much. I'm so glad that you are feeling so much better and have a better life now. It's really encouraging to me to be able to see others who have been fighting the battle for so long and are winning Good luck to you.
Posts: 89 | From UT | Registered: Jun 2006
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posted
Wow. I am impressed with your ability to express yourself and communicate.
You have more maturity in your years than some of us older folks.
I was not able to read all of your post. But, I did want to let you know that I recently read an article by Dr. Donta. He said that 80% of those who are treated for lyme get better. Those are pretty good odds.
I have limited my time around family and am very choosing regarding whom I am around.
I think it is a gift that people have regarding acceptance and compassion and not too many people have this gift.
Once you have a lyme specialist working in your corner the battle doesn't seem so overwhelming...well for the most part.
Posts: 89 | From AZ | Registered: Mar 2006
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posted
thanks Happy Camper for taking your time for my post! your screen name is ironic to me because I have a fun little song that I used to sing to the girls at Girls Camp called 'it's Happy Camper time' ha ha i even got the "Happy Camper Award"
Posts: 89 | From UT | Registered: Jun 2006
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posted
Jggrl, I have had lyme for 8 years, 6 of them undiagnosed. I lost my job, my wife left me, I no longer have any friends because I don't do much, I get my kids .5 the time and my family doesn't understand what is going on or why I can't get better. I just wanted to put this in so you knew a little about me and why I am replying to your post.
You've got to go on with your life. You may have lyme for a long time, or you may get better soon, but chances are that you won't get better all at once so here is what I would do.
You have to continue to live and fall in line with your "life's schedule". I worked while I had lyme for 5 years and didn't go on disability until my second IV treatment spiked my symptoms and the spike didn't go away. It is hard to do but you have to try. That being said... control your schedule as much as you can. I would live in the dorm because that is part of growing up and an important part of college. It is very important for your parents to spring for the "single room". While you are sick with lyme I would always try to live alone, because if you have a room mate they will always interpret your need to lay down and sleep as laziness and they will have to take up the slack and they will resent you for it. Count on an extra year for school. Lyme may slow you down but don't let it stop you. Before you know it you will have your degree and in the mean time you can be researching jobs that are flexible and let you work some from at home. It is possible to make a living while sick with lyme. It is hard unless you find the right situation. You can not take a job in a call center or anywhere that they make you "plug in and plug out". You need flexibility! If at all possible try to start your own blog or other internet business because that would be the very best way for you to support yourself and if you work on building it through your college years you will have a great start. Who knows you may even become wealthy before you get out of school... It has happened more than I care to tell you. On a personal note... Don't plan on getting too involved with a significant other. It is very hard and very complicated to live with a lyme patient. It will be very hard on your partner and they would have to adjust their long-term dreams in order to accommodate you. Just play it cool for a while...
Good luck to you. You have a tougher "row to hoe" than most people but you can do it. Don't count on the lyme being gone because waiting to be cured is a terrible mental mistake that will effect both your ability to get better and your "life's calendar".
Sincerely, Mighty Joe ps- these are my blogs... I'm interested in these subjects. My Blogs are not generating any revenue yet but eventually I hope to partially support myself with them. Every little bit helps... Blogs are only one avenue and there are many alternate routes to supporting yourself. It will make a huge difference in your life if you can support yourself. http://mightyjoesfree.blogspot.com/ http://mightyjoefirefox.blogspot.com/ http://mightyjoesgoogle.blogspot.com/Posts: 1 | From Raleigh | Registered: Jun 2006
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posted
I completely understand what you are going through. It might even be harder for you as a teen to be dealing with it. I'm a 38 year old mom of 2 kids (ages 9 & 10) who use to work out at the gym, run my own retail store, volunteer at kids' school, coach cheerleading, etc. Last year I sold my business and started working parttime but still doing the volunteer stuff...until this illness took over. I'm also still waiting for a diagnosis.
During the past 9 months, I have had support from a few close friends and my husband and kids. However, the rest of the family seems to think it's not such a big deal. When I am in pain, I generally do not leave the house so they don't see me until I'm feeling better. Without a diagnosis, people seem to think there really isn't anything wrong.
My mother was not very supportive the other day(and had Lyme for 16 years...so she should know better!) and I told her I wish I had been diagnosed with cancer because I'd be better by now! (I don't really wish it - just needed to make a point with her!) At the same time my symptoms started, a woman I know was diagnosed with breast cancer...9 months later, she has already had reconstruction surgery, finished all treatments and has hair growing back. She also had meals delivered every day for 3 months. Me...well, my husband and daughter have learned a few recipes because some days I simply can't think how to put a meal together. Nobody says "well, you have all the symptoms of cancer but the test is borderline so we'll just wait and see what happens." A test comes back positive for cancer, and there is already a set protocall for treatment. I just don't understand why there isn't a standard protocall for Lyme regardless of the stupid tests!!!! (I don't mean to undermine those going through cancer because that is truly worse than Lyme...but at least you know what demon you're facing and how to fight it!)
I can imagine what you are thinking in terms of choosing college or work while dealing with the illness. Although I do not NEED to work to pay bills, I WANT to work to help save for kid's college, vacation, etc. I also WANT to help in my kids' school, I WANT to play outside with them, go to the beach, tuck them in at night but sometimes I can't get up the stairs! They are still so young and it breaks my heart that their mommy can't do these things. When they try to tell me it's okay I can't play basketball with them, the look in their eyes brings tears to mine.
Then, the "mother" in me gets fired up and I decide I WILL NOT let this disease hurt my children...and I start researching and compiling as much ammunition, I mean, information, to take to the next doctor's appt. And I demand certain tests, referrals, etc. I will get better!!!!
As a teen, I'm sure it's harder to be taken seriously 'cause I'm dealing with that too! But the best thing you can do is keep pushing and tell your friends exactly how you feel. I really think that people don't realize how debilitating this disease can be and so they don't know how to be supportive. They would probably act completely different if it was a serious or life-threatening disease which fortunately isn't the case. Perhaps you could share with one friend how isolated you feel and what would help you feel better...and let the word get around!! It's hard enough being a teen let alone being sick!! I hope your friends come around!!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
OptiMisTick - You couldn't have put it any better! My son, Jordan had been sick all through high school. I wish that I knew then what I know now! Your advice was wonderful.
Posts: 2097 | From PA | Registered: Jan 2004
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My kids are 15 and 17 and they both have lyme. I also got infected, all of us, back in 1992. It took me 12-1/2 years to get a diagnosis.
There will be many days where you doubt life, your illness and the strength in yourself. That is part of being alive and dealing with this disease.
But know that you are far stronger than you ever believed possible. And that you are NOT alone in this.
IF it helps any, read "The Forgotten", a piece I wrote about the face of Lyme Disease. www.lymeleague.com/prose.html
And post your name and story on the site as well. Read the stories there to see there are others, who are experiencing the very same things you are.
Find someone you can use for support. Friends may distance themselves, family members won't understand. People with Lyme will, however, better than anyone else. Read whatever you can, be kind to yourself, and empower yourself to take charge of your illness and do whatever you can to get well.
You will have ups and downs in the process, but the lessons learned along the way, and the people you meet will enrich your life in ways you could never have imagined possible.
A HUGE hug from one Lyme mother to a wonderful young person who really needs it most.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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Love to you all and i'm so grateful for your help and glad i found this place where i can talk with people who truly understand.![[group hug]](graemlins/grouphug.gif)
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,and I had the same reaction as you when first diagnosed with Lyme, very apprehensive about the future, and overwhelmed by the magnitude of treatment.![[Smile]](smile.gif)
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also, a bunch of friends and fam are asking about lyme and what it entails (symptoms, treatment, etc). what's the best site you know of to show them the info about Lyme? thanks.
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