It does get better

My last post was in June. It has been awhile. Partly it was the herx and partly I just felt quiet about talking about this disease. I was going through a quiet phase. I had my fair share of herx these past few months which mostly was nausea and lots of it. I can honestly say I hate nausea. I didn't mind the nausea when it was following a night of tequila shots but that was also on weekends not every single day, all day long. As of late it has gotten better which is why I am back to blogging (well just one blog really). This past weekend I recieved a phone call from somebody that also has Lyme and felt discouraged and frightened of the treatment. That phone call got me thinking. It seems that there is lots of information on Lyme disease and how horrible it is from Lyme patients but once these Lyme patients get better they get on with their lives and do not continue sharing the other side of Lyme disease. That other side is where 'the good stuff' is. It is absolutely normal once the treatment is over to get on with ones life and put as much distance from this ordeal as possible however I have never been that normal about anything! Taking all these antibiotics does suck. Some of them taste so vile that words do not exist that can explain the taste. It's one of those things that has to be experienced to be understood. The woman that called me this past weekend expressed concern about taking antibiotics. Yes, there are risks with antibiotics. There are risks with a lot of things. The example I have is this- there are risks associated with radiation and chemotherapy for cancer patients but that doesn't mean they do not go into treatment, it does not mean they let the cancer grow. This Lyme bacteria can not be allowed to just grow in my body. It must be stopped. The antibiotics must stop it and stop it they are hence the herx. This is my thinking on my treatment and everyone is entitled to their own opinion on this. I am not completely on the other side of this disease but I am getting there. And from where I am standing it's pretty damn good. The pain gets less and less, the fatigue starts to abate and my memory gets better. The herx by way of nausea, joint pain, headaches and faitigue are worth it. And what's more it's temporary - I will not be sick forever. The antibiotics are working, they just take time. It took the Lyme bacteria years to distroy my body and now it will take awhile for the antibiotics to restore it. I am very lucky- I was diagnosed early enough that my life was not destroyed by it completely. It will just take some time. I have gotten well enough that now I am impatient with my treatment and I want it over and done with. That is a good sign. I now have the energy to be impatient where as a year ago I did not. So, just to repeat again- it does get better. The other side is where 'the good stuff' is and where Lyme disease will be a part of my past not a part of my future. Until next time - stay tick free and toodles for now.

Herx and more herx and more herx

It has been a while since I have blogged about my recovery. Starting from the end of April until today it has been a rollercoaster ride of herx reactions. I had a couple of weeks off from herxing long enough to catch my breathe. The herx reaction I had in April was pure physical pain. My life consisted of me wearing sunglasses in the dark, laying on the coach hating life. My neck specifically hurt so much I could not bare it. Headaches who tough as was the nausea that accompanied it. every joint in my body hurt. The extreme fatigue was demoralizing and scary. I used to have so much energy and was active in my life and now my life is nothing more than fatigue/exhaustion, physical pain and a rollercoaster of emotions - a mostly permanent state of PMS. By mid June I was starting to feel better just in time to start my new round of antibiotics - by that I mean my LLMD changed my meds. When I had my doctor's appointment, my LLMD appologised three times to me about the herx reaction these new meds will put me through. I figured it was going to be more physical pain like in April. Surprise! Surprise! The physical pain was minimal in contrast to the emotional hell I went through. I would spend my days and nights just crying, I would stop long enough to catch my breathe and then came another flood of tears. I was upset about everything. I would not call it a depression because depressed people have a reason to be depressed. I had no reason to be depressed yet I felt so bad. It was an exaggerated pity party with no end in sight. But the end did come, eventually. Now I am over the worst of it - emotionally. Physically my symptoms are subsiding from the herx flare up and I started doing yoga again as of last week. I order from PBS a yoga DVD- Easy Yoga for Easing Pain. My LLMD said it would be okay to try it. I did like it. I used to do an hour and a half of hot yoga before Lyme disease but now that would be a little too ambitious for me. The DVD is about an hour and it was okay. I did not push myself. My muscles were sensitive to it so I took it slowly. It did tire me out and it took a couple of days to regain my strength. I hate being fatigued. I will try to do it twice this week. Increase it by one work out a week. Fatigue sucks because for me it also bring along brain fog. I hate it when my intelligence does not work at the level I like it to. My mind would fire on all cylinders as would my body but now it does not. It frustrates me. It makes me sad. I want my life back. The life that was full of promise and fun not meds and pain. I know I am getting better but I am impatient for this chapter of my life to be closed and I am eager for the good times to begin. Until next time- stay tick free and toodles for now.

Time for some catching up

The new treatment my Lyme Specialist started me on has been uneventful in terms of bad symptoms/reactions. That by no way means I have not made more progress but the progress has not been unpleasant. I have finally found a local doctor (who talks more than I do....and I didn't think that was ever possible) who will treatment me as per my Lyme specialist's protocols. No more getting my antibiotics from online pharmacies. Yippy!

My Lyme doctor also started me on an excercise program. Actually, that was a negotiation. She wanted to send me to the hospital for physio but I thought 'No way am I going to a hosptial unless an ambulance is bringing me there', so I suggested Curves Gym. She agree and off to Curves I went. At first it was a couple of times a week and half the circuit. I am in my third month of Curves and I am going there 3 to 4 times a week doing the circuit twice. My body is getting stronger. My Lyme doc told me that the fastest way to get better is to excercise....excercising keeps the bacteria moving instead of resting and hiding in my body and as it's moving the antibiotics are doing their bit to kill those little buggers off. I do have days were I am tired but those day are fewer and fewer. The solution to that is just going to bed early and that does the trick. Listening to my body has been my biggest lesson learned. It's interesting that we carry around answers to our questions and problems but we are too busy listening to the outside noises of the world and forget to just listen to our inner voice. Our wise inner voice that has the wisdom of Socrates and the unconditional love and innocence of a child. I have learned about going back to basics- that has become my new foundation to built upon.

My Yeast Free Sugar Free Diet is another issue. I stick to it for a bit then I have a cookie or four. At first I would get all mad at myself, then I realized I am human and not perfect. So I stumble and fall, that is okay because as long as I get up I can fight another fight. Here is some info that does help me in keeping myself diet compliant and getting up to fight the fight - 'Lyme bacteria feeds off sugar and yeast and if you eliminate sugar and yeast then you are cutting off their food supply'. I wrote that on a post it and have it posted in my kitchen. Sometimes it helps knowing why doctors ask you to do stuff and follow their orders. I will say one thing- it's easier to follow this diet in the summer time than in the winter time. Winter is about comfort and comfort food. Thank God it's spring.

My next Lyme doc appointment is in early May. I am looking forward it.
Until next time- stay tick free and toodles for now.

First day of new cycle

Day went fine. No herx, no nothing. Liking this a lot. Overall good day for me.
Until next time- stay tick free and toodles for now.

'Twas the night before my new cycle of different antibiotics..

and all through my stomach, butterflies are stirring and nerves are ajar.The meds are in their individual compartments, placed there with care, in hopes that no herx reaction makes it a nightmare.

Okay, so I have been listening too wayyyy tooooo much Christmas music and I definately have the Yuletide spirit. Christmas is my favorite holiday and although I am happy that I am under treatment for Lyme the fact that I won't be enjoying all the yuletide food and cheer is upsetting. I am starting to feel like a puppy with my nose up against the window, wimpering, wanting to come in and feast. YFSF diet this holiday season will be tough but my husband said he will help me when I feel like cheating on my diet.

Now, back to my nerves. I am nervous about my new cycle of meds I will start tomorrow morning. Everytime my meds are changed I do have a herx like reaction - which sucks, so I am nervous and anxious over how bad it will be. I am trying to have happy thoughts but past experience has shown me that I will feel sick until my body adjusts and a die off occurs. Hope it won't be so bad is all I can hope for and lots of prayers that I get through it like a trooper. With every bad experience I am that closer to getting better.

Until next time- stay tick free and toodles for now.

Unsung heros

It is easy to get all caught up in my Lyme Disease and everything that it entails. It is rough on us Lyme patients on our bodies and in our mids. You know who else suffers and nobody really things about them? It's the people in our life, our spouses/partners, our family member, our children (those who have them) and our friends. These people get treated badly when us Lyme patients have a bad bout of the disease when all the systems flare up and flare up badly they do. They do not deserve it. Lyme patients don't deserve it either. Lyme ends up turning both us Lyme patients and our loved ones victims of this disease. My husband has been amazingly good through it all. Mostly he has suffered in silence but he has suffered just the same and I am sad for him for that. My mom although not that silent about her suffering has suffered too. Watching her child hurt kills her and she has told me that (like I wrote my mom is not the silent type).
I am sorry for all the bad stuff that my disease has brought into the lives of my loved ones and I am grateful for all my family and friends and of course my spouse that are still there for me even though I have given them plenty of reasons not to be when my Lyme got the better of me. They are the unsung heros in the lives of us Lyme patients and in my life in particular. I am grateful for all the blessings of these unsung heros in my life. Thank you.
Until next time- stay tick free and toodles for now.

Darkest before the dawn

A lot has happened since last Thursday. The aftermath of my husbands' family doctor refusing to treat me was devastating to both of us. The weekend was a tough one for both of us. On Thursday amidst all the sadness and tears I grabbed the board game TROUBLE and my husband and I played a few rounds of that. That, actually made us feel better. I am not sure what possessed me to grab a board game. I guess I must have regressed back to childhood times and childhood board games. In childhood things seem safe and okay or at the very least not that bad. We played several rounds of Trouble on Thursday, Friday and Saturday. That helped us both immensely.
One other thing helped. This one I do not recommend and I am pretty sure my Lyme doctor would be pissed if she ever found out. The second Saturday of every month is a regular get together with a couple of friends of ours. We went over to their place. I warned my husband before we showed up at their place that tonight I will not take any meds, I will eat whatever I want and I will get shit faced drunk. I made that announcement when I got to our friends place too. And shit faced drunk I got. I needed a night of heavy duty boozing. I needed an emotional escape from everything. The events of the last few months all caught up with me in a big way. At one point my husband suggested we go home so I would not get sick at our friends place. It's best to be drunk sick in ones own place, not a friends - as a rule of thumb. So we left but not before Nancy handed me a bucket for the road. Well, on the road the bucket got used. I asked my husband how long I was puking. He said about 2 kilometers worth. Impressive. It was great. I purged all the stress, anxiety, sadness, disappointment, fear and worry of the last few months. And I felt great afterwards. I can't explain the absolute relief that purge fest had on me. We got home and I slept the sleep of the just. I woke up the next morning feeling like a million bucks. No hangover. Just felt great. Spent the day prepping my meals for the week (YFSF).
So, Monday arrived and I went to see another doctor who refused to treat me. I was disappointment but mildly. On Tuesday I had another appointment with a doctor....he agreed to treat me and to follow my Lyme doctors' treatment protocol. WOW. Finally. After all the struggles, stress and tears and after over 6 months of looking for a doctor to treat me locally for Lyme alongside my US doctor, I found him. Funny thing is this doctor likes to talk as much as I do ----and that is saying something. I always have to much too say about everything. I am a 24/7 peanut gallery and so is my doctor- love that about him. He is a nice man and I am glad he is on my team of doctors. I still feel a bit nervous and anxious. Kinda like I am waiting for the other shoe to drop. After all the struggling for so long, even before my Lyme diagnosis there was a struggle. I was feeling awful and no doctor knew what I had. Some even thought it was all in my mind and offered to give me anxiety meds because obviously anxiety meds cure all the pain from Lyme disease and after all it's all in my head. NOT! NowI am trying to not feel like someone will pull the rug out from under me and take away my doctor or that he changes his mind. I guess I am going to have to get used to things being okay now. That's a new feeling or a feeling I haven't felt in far too long. But as of now I am okay.
I did spent this past weekend emailing my local politicians, the Minister of Health Canada and the College of Physicians to complain about the nonexistent help that Quebec and Canada offers to Lyme patients. Not sure where all that will take me but they have got to realize that they can't spend all their time ignoring a disease that is real just because it makes them uncomfortable. It is time my country grows a pair and mans up.
Until next time- stay tick free and toodles for now.