Hi. Thanks to those of you who gave me suggestions for LLMDs in states surrounding mine. I just had my blood drawn again a couple days ago, and a local doctor is interested in seeing how another western blot looks now that I've been on a low dose of doxycycline for a month. I don't have a Lyme diagnosis yet, but my last wb (from Quest-- yes, I know, not ideal) came back with four bars. I've been having symptoms for at least 8 years, but this past year and especially this semester has been killer as my symptoms increase exponentially. Life is insanely hectic at the moment because my little sister is getting married in January, but we're still working on getting in touch with a good Lyme doc.
Here is my next dilemma: I'm 22, living at home with totally supportive parents, no boyfriend, no kids, with my own business and freelance work. I'm a semester and a half away from having a BA from a local school. I'm struggling to stay on track although life really isn't that demanding.
Some days I can walk slowly, other days I creep. I'm having lots of difficulty breathing, and constantly feel like I'm suffocating or going to pass out. I took a shower last week and somehow ended up afterwards on my bedroom floor unable to get up.
I don't want to aim for martyrdom and insist on crawling on my hands and knees to class or church, but I'm pretty stubborn and I don't want to let myself give in too easily either.
SO HERE'S THE QUESTION I'M THROWING OUT FOR EVERYBODY:
How do you (personally) decide when to say yes or no to something? How do you balance living life with maintaining some level of health? A wheelchair is starting to look really appealing some days. And is a shower chair for a klutz more dangerous than it's worth? How do you evaluate these things in your life? What do you look at or what aspects do you weigh?
The only example I have in the area of balancing life and poor health is my grandmother who, after having heart bypass surgery and a pacemaker installed, goes out and splits enough firewood for a year and then complains that she doesn't feel good.
I don't want to be in denial, and I do want to be responsible and careful about how I progress with life.
Thanks for any input you want to share!
Posted by Melodymaker (Member # 16434) on :
I'm puzzled that you don't have a Lyme diagnosis if the Quest test came back with 4 positive bars. Are you seeing a LLMD??
I found that I could only survive well if I cut out all sugar, and ate a very healthy diet. This was the most important factor in my 25 year battle with Lyme.
I contracted Lyme at age 26, and decided to do everything I could to live healthy and well. (back then they said it was fibromyalgia, and they couldn't do anything about it)
I decided to treat myself, and learned that diet makes a huge difference to your health with this disease.
Eat healthy, avoid sugar, and resolve to live well. You have a lifetime of happiness waiting for you.
Getting proper treatment, and eating healthy, is your best defense.
Posted by lymielauren28 (Member # 13742) on :
You just asked the million dollar question! A question I don't have the answer to, because I struggle with same thing.
For me personally, I simply take it day by day. I try as best as I can to listen to my body and give it the rest and respect it deserves. It's so hard because life goes on doesn't it? Life is crazy and hectic and it's not designed for the chronically ill that's for sure.
There are birthdays and weddings and deadlines and commitments, but sometimes you just have to say no. Somedays you have to say yes. It's a juggling act, and a tough one at that. I admire your tenacity and your unwillingness to "give in", but remember you're not giving in, or giving up but simply taking a break sometimes - one that your body has to have to recover and function the way it needs to.
Lauren
Posted by ThatColorGreen (Member # 16016) on :
well i can surely relate to you. I'm 23 in my last semester of college, struggling greatly to get through.
After 15 years of doctors, i finally was diagnosed within this past year.
I also ask 'how do you know when enough is enough'.
I have asked one person after the next,including a recent trip to the college academic office for medical withdrawl options
(Let's just say that little visit ended after she said 'well medical withdrawl is for people that are REALLY sick ... maybe you should go next door to see a counselor")
but ultimately I believe that if you sincerely listen to yourself, you will find the answer.
i know that does not ease your frustration. Just know that you are Not alone and there are others who truly understand your circumstances.
I have learned rather quickly that too many people are unaware and unconcerned...
i was looked upon as a 'phony' because i want to push through this disease so i can graduate. "if someone is really sick, they would not be able to finish the semester....."
I suppose my personal advice is to sit down with yourself and listen to your body. If you are spiritual, I find that talking to God helps too.
I'm sorry that you are going through this, but I am yet to meet a lyme patient that is not strong willed, determined and good natured.
You will get through this and you have a place to come to for support.
PM me anytime if you want to share stories.
and lauren: ditto
with sincerity, Green Posted by Liz D (Member # 16739) on :
Lyme has taken over my whole life and at the moment I cant seem to find a way to get back some control.
Posted by ajisuun (Member # 17658) on :
Set your priorities and decide how you want to spend your energy. Do what you have to do to be functional. If that means a shower chair, get one. If that means scheduling 3 hours in the middle of the day to rest (that's what I have to do), then do that. If if means not having " a life" until you finish school then accept that school is the only life you can have right now. Do whatever you can to ease the stress and energy demands. If that means that you need to take a lighter college load, then do that. Look into herbal products too. I am on doxy, but when I started taking Cat's Claw, I had a herx reaction and then about a month later my pain stopped.
Posted by bettyg (Member # 6147) on :
tough question we all deal with but i really feel for ALL YOU YOUNGINS!!
i don't commit to anything; i've said yes to many times and then NOT WELL enough to leave home.
i plan from day to day only...
if you need a wheel chair or a scotter to get around; do so!
bath chair; definitely to have as a safety device and place to hang onto sitting...
wishing you the best! Posted by Tracy9 (Member # 7521) on :
Unfortunately, I find I cannot effectively balance Life with Lyme.
Lyme balances me, and it is WAY off balance.
Lyme runs the show. Or should I say, steals the show.
Posted by Liz D (Member # 16739) on :
Tracy9 - you got it in a nutshell ! I dont seem to have it in me to take control. If we figure out a way - what a blessing.
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