It just occurred to me that from Oct 2012 to Oct 2013, I did a lot. I ran a dishgarden business and opened up a flower shop . Worked hard 6 to 7 days a week. It is now 2016, I sold my flower shop back in April and started to do what I really wanted to. I learned Tuning Fork Therapy. Amazing stuff. I now have a company called The Harmonious Soul and do the tuning fork treatments along with sound therapy using singing bowls, drums and such. Life is better. I am also opening up a Wellness Center in the next few months.

The Lyme Dr? We haven't' seen him in quite some time. Both of us are so much better. Still have minimal issues. My husband...the ringing in the ears never quits but only quiets. He works so unbelievably hard. Never gives up on anything. Loves life but wishes the work did not control life.

Me......I still get tired sometimes and do not have the energy I did all those years ago. Minimal depression but that always seems to be about the money thing. We work so hard and it all just goes
to bills and we can't seem to put anything away.

Our Lyme is at bay if not gone. There is always a worry that it will come back. This winter was extremely mild and the ticks have been out all year. We check ourselves but you never know. At least we have been there and back. We have experienced what Lyme does, how long it takes if you end up with Chronic Lyme. We have the best LL doctor ever.

We work, live our lives, struggle but still survive, so far, so good.

Who know what life will bring. Don't wait for the bad news, live day to day. Conquer if you can, climb that mountain and keep walking in the vallys. We are all human. Be kind, considerate, help others fight the fight but give yourself credit. Take a little vacation. I want to live, not just exist.

HANG IN THERE. YOU'VE GOT THIS!

October of 2013

Not posting too much here these days. I think that I don't like to remind myself that I have a blog, a lyme story, an ongoing story. I want to feel normal, young, energetic and more. Lyme disease has taken a lot of my health and life but I still fight the fight. I still work Tues-Sat at my floral shop, do what I can at home. I still have to pick and choose what I want to do on my off time, of late? well, its not much of anything. I find myself really tired, I can hear my lyme Dr saying that I should take these supplements to get more energy back. I am so tired of swallowing pills I don't want to unless I am so sick I have to attitude. My husband is so very good at swallowing pills, he can swallow a handful at a time twice a day, not me. I dread it, always have, always will. Anyway, I feel so drained I hate to do anything. My comment was to him this a.m.
I wish we would win the lottery so we could do whatever we wanted to......meaning I was too tired to go to work, do the every day stuff and that I could relax, do my photography, go at my pace instead of the worlds pace. Well, at least my two feet are walking. It could always be worse.

Yes I still have some symptoms but I must say that the both of us are doing extremely well.
Even though I feel exhausted and he is too, we both work a lot, we do a lot, we try a lot, we are not ready yet to give up. 





 

Here It Is A Year Later....

Last year at this time was my last post. After finishing up the medications last time I decided to take a break from everything. I was feeling great. No symptoms, working hard, and totally ignoring the fact that I have Lyme disease. I did not get the test to check if there was active lyme in my system. At that time we were trying to get our lives back together with working and trying to put away some money that we spent for our treatment actually saving for the treatment again and again. That is a hard thing to do in this economy especially when your so sick you can not work and your saving go quickly. So I ignored everything. Symptoms started to come back in August. First it was horrible air hunger. Then it was constant neck and shoulder pain. Come to think of it, I had those neck and shoulder pains 3 times in the past year. So bad at times I called my regular Dr and told him of the pain, went in and had xrays done on my neck and upper back, he did blood work etc... and followed up with me. He prescribed anti-inflammatory and pain meds. Eventually the pain would go away only to come back a month or two later. I didn't think it was related to the lyme back then. But now when the severe air hunger started I still had some medicines left over that were still good and decided to do a treatment that the lyme dr gave me before.  I took 3 weeks of them. They seemed to do little if nothing and the pains got really worse after I took myself off. So we both have an appointment on Dec. 3. I am worried about paying for the tests that we both need and the visit to the Lyme Dr. It has to be done regardless but we are stretched to the limits here. There never is extra money for anything let alone trying to get ourselves back into a healthy state again. I know HUH? honestly I tell myself to call 1-800- WAAH :)

Let me go over these symptoms that flared up again. Air hunger, neck and shoulder pain, stabbing pains anywhere in the body at anytime, memory issues, spelling issues, nausea, pain in my lower back, hips, thighs, knees, elbows, arms, hands. Tendinitis, Dizziness out of nowhere along with pressure in my head, I would think I was going to pass out. I also had the feeling over the summer that I couldn't drive safely. Hard to explain but almost felt like that section of the brain wasn't working and I was afraid I would get into an accident. Sounds funny doesn't it, "missing brain sections". Honestly it really felt void somewhere in there.
Now when I work hard in my greenhouse making my dishgarden orders I am racked with pain, severe pain like I was hit by a truck. This is so hard to deal with at times especially when you look alright from the outside.

I don't know what the future will bring. I only know that it will be filled up with new treatments until we are symptom free and take a blood test to see where we are at.
I have to admit I know people with lyme who are much worse off than myself or my husband is. Symptoms they will never get rid of and literally are scared they won't make it much longer. Some are strong regardless of what they go through, others are just bedridden, waiting, for something to happen to get better or to just wish it would end.

Lyme is so serious it boggles my mind how trivial most Dr's and people think it is. "Oh you have lymes?" Yeah my dog has that too!" Thats what I hear all the time. Until they experience it for themselves they will never know the damage it can cause, sadly even death. It is still sad that chronic lyme "does not" exist in most Dr's eyes (world). WE ARE PROOF. STOP THE MADDNESS, STOP THE LIES, STOP THE POLITICAL FIGHTS. Those of you who deny it? Well, it saddens me to wish upon you what people who fight this nasty disease feel everyday and then to be told your crazy and it is not lyme. Walk in these shoes for one year then come back and tell us its not real. Tell me those tiny spirochetes are not real swimming in our bodies and delivering us into hell!!!!! We live in the hell, there is plenty of proof, it does do damage beyond repair and it does kill.

For the people who read this and think they may have it, NEVER GIVE UP, NEVER TAKE NO FOR AN ANSWER FROM YOUR DR. YOU MUST FIND A LYME LITERATE DR TO TREAT YOU OR AT LEAST A DR WHO BELIEVES ITS REAL, WANTS TO KNOW MORE AND TREAT YOU WITH THE HELP OF A LYME LITERATE DR. FIGHT THE FIGHT IF NOT FOR YOURSELF THAN FOR YOUR CHILDRENS AND FAMILIES SAKE! THIS IS NOT A FICTIONAL THING.

Still Fighting the Fight

Still fighting the fight, :(
Sad but true, when you think its over, its not. But I am still fighting the fight.
Back on medications 2 weeks on and then 2 weeks off. I delayed getting back on them
due to a "turned 50" procedure that was recommended. So after that was done I got back on. 2 weeks I'm thinking great I don't feel any difference. Just when the 2 weeks were almost over I started with hip, knee and ankle pain along with one foot aching. Two days later (I had to unload 52 plant boxes from an 18 wheeler and by the time I was finished with 3 loads hauling from one place to the other I had to lay down. Hurting from head to toe I didn't move a muscle for about an hour on the couch, then I had to get up and unload each box and put thousands of plants away. I was totally exhausted and hurting for 3 days after that. I ended the meds on the 3rd day after that to begin my 2 weeks off. I did notice the pain diminish. So I am thinking that was all Herxing. We'll see when I begin my 2 weeks on again.
NOT LOOKING FORWARD TO THAT.
One thing I did do in October was another art/craft show for 3 days. When I do those I pass out free information on Lyme disease and most people want to talk. Its nice to just get educational material out there especially in MA.
I still travel (along with my husband) to Bridgeport, CT. to see our lyme specialist. He is amazing!!! We have helped so many others and we met one of the families on our last trip there. We (especially my husband Jeff) got hugs and kisses and praise from the mother and from the young man. He is on his way to better days. I love that part of it. HELPING OTHERS!! My husband does more of that for people he meets. Just to see happiness and relief that they have found some actual help.
Well onward and upward is all I can say now.
Fight the fight and never give up!
PEACE

Bad Girl

Well, since Lyme has drained most of our money and most Dr's in Massachusetts don't know much about it, we have missed appt's with our Lyme Specialist. Its hard when insurance does not pay for out of the "system" Dr's. At 250 dollars each, my husband and I, thats a lot of money to dish out. After being off the meds for two months, things have come back.
At times incredible joint pain in my hands, elbows, back and knees. Stabbing pains in legs and arms. I should be glad thats all thats back but we need to go back and get another round of meds. So we will be calling the Dr. soon.
I wish we could find a Dr in the "system that is as educated as our Lyme Literate Dr. But since MA recently passed a law for Dr's to treat it longer than they were allowed maybe someone is out there that the insurance will pay for. Thing is, how do you find them and how long can you wait. Switching Dr's is not fun either.

Its been awhile!

Yeah, so what.....its been awhile. I know. I am trying to ignore the Lyme thing. Its bee too long, met too many other people who have it or think they do or are seriously ill from it. So sad. Still frustrating!

I went for another Dr visit this summer. He thought I was almost done with it. He is a bit late getting back with test results though. Anywho, the tests show I still have Barbesia and 4 Lyme bands. I didn't call him yet to see whats next. One part of me says forget about it and the other part knows better.

Lyme sucks, no if's and's or but's about that.

I was on the 2 weeks on meds and then 2 weeks off but now I think that will change. Can't wait for this to be over, but then again I am afraid to get bit. Actually had a tick on me yesterday, in my ear.
Never felt it but I think I got it before it attached.

I hate them. I think we can live in the world without ticks......

till next time

so far so good

I am feeling much better, lots of energy, head really clear, easy to remember things at work, body aches very little. I still have sutle symptoms, off the doxy, wishing I could take it thou, had lots of Herx with it but that means it was doing a good job killing them off.
Tick season is beginning and I find myself scared to have them on me again. I want to find some all natural product ( maybe make my own) to put on, maybe some essential oils in suntan lotion, I will have to experiment to see what helps. Pets need to be treated also.
So far so good. We will see next month how its going.