People that know me the best know that I like to dance. Well actually I love to dance. It is almost torture to be some where, especially with a dance floor, when a good song comes on. I can't sit still. I have a constant need to move to the beat of the music, in church, in the car, at home...Anyways I think you get the point. So the other day I made up a new dance. I decided to call it the Trader Joe Twitch. It is so easy to do I figured I would share it with you just in case you wanted to try it. All you have to do is grab a shopping cart, walk into your local Trader Joe's, and then begin having a seizure as you push your cart around the store.
That's right, after almost 3 months of no seizures I had one the other day when I was grocery shopping. I felt like one was coming on for about 3 days. I tried so hard to make it go away but with no such luck. I needed to get my shopping done so I just carefully maneuvered my cart through the store trying to not accidentally hit someone or give them my almost famous seizure thumbs up. I tried to keep my vocalizations quiet enough as to not draw attention and I fumbled my way through a conversation with the checker, stuttering as I went. I had a few choice words running through my head as I let my frustration get the best of me. What the heck is going on? Why do I feel so bad again? I don't understand.
For close to a month now I feel like I have been starting to regress a little bit. I assumed that the transient pain that was starting to reappear had to do with stopping my remedies to early by mistake. However when I went back to Kansas last month, the remedies I thought would be responsible my body didn't want anymore. To make it even more frustrating, it looked as if my Lyme was under much better control but my viruses were really a problem. Any progress I had the second go around is gone and the last week, especially the last few days have been hell. I am beyond tired, my brain is pretty much worthless, the seizure, and the PAIN! Muscle pain, nerve pain, joint pain, bone pain. The joint and the bone pain are at getting fairly high up on my pain scale and it has been this intense for three days now. That has never happened. Time to e-mail the doc and see what his thoughts are. I have been trying to detox more than normal and don't feel like I am getting any relief.
I am so bummed out right now. I guess I just thought things were really moving in the right direction (which they may be) and that I was reaching a stopping point so I feel like I am so moving backwards. I have been reminded recently though that my treatment is almost for sure going to be long, really long, term. I have been sick for over 26 yrs and I can't expect to get better in a year or even 2 years. I feel like I am at some sort of cross roads though on what I do for treatment. Frankly weather I go back to antibiotics or stay on the natural road with Hansa or someone else we are out of money. So unless I win the lottery the best treatment for me at this point is probably not going to be an option I have. I just feel lost at this point. I don't feel like I am even able to make the best treatment choice anymore. I need a third person to come in and hear what all the doctors have to say, and do some research and help me sort all of this out. It is just to much.
To make things more complicated, we of course I dealing with the fact the our 8 yr old has Lyme. I found out this week she has been suffering from the ringing in the ears and her intermittent dizzy spells are happening almost daily. She also broke out in the worst case of hives she has had in years. I don't know if this is a healing crisis, if the remedies have stirred up the Lyme and the bacteria is changing form, or what is going on. Her pediatrician doesn't even know about the diagnosis yet and frankly can't treat her as she knows nothing about it. I so wanted to go the natural route with my kids but am not sure if that is going to work. Both of my natural options are probably out of the question financially. Switching the kids to my doc would work for a little bit but again the natural therapies would cost more than we can afford. If I stop all treatment I will go backwards and could end up not able to care for my family at all. Yet at the same time, I won't let my daughter suffer. This is really something only God can handle. I have to remember to just give it up to him.
I'll let you know what the doctors say and how things go over the next week. Prayers and positive energy are always appreciated. Oh and I finally have a website for my new business. Please check it out and let me know if you could use my services. www.surfchaserphoto.com
Tuesday, April 17, 2012
Tuesday, April 10, 2012
As you can probably guess by the title of this post things are not exactly amazing right now. Let me say that I am blessed and my life is good. I have so much to be thankful for. I have been trying to increase my positiveness and stay positive and for the most part I think I have done a fair job. But as you may have learned by now I do vent when things aren't going so well. I have gotten much better at not posting negative things everyday but there are times when it is necessary and this is one of them. I am trying to walk the line of being positive without making this disease look like its no big deal. There are days when this disease seems like it is the only thing you have going on in your life. The last week or so I am being reminded that this battle will be a life long one.
Unfortunately this second round at Hansa has not produced the results that I saw the first time. I do believe that has a lot to do with how toxic I may have let myself get. I think because I was feeling so much better than I had in at least a year I was overdoing it and not taking care of my self the way that I should be. I know I have mentioned it in early posts but one of the things that is so frustrating about this disease is never knowing for sure why you feeling like you do. Is it a herx, is it a flare, is it just part of the disease? Even with tracking symptoms sometimes you still can not tell. Over the past couple of weeks I have had an increase in my brain issues. I am having a harder time concentrating and am more forgetful. I also feel more easily overwhelmed. Some of my heart and breathing issues have also increased a little. The biggest thing is some of my pain is back. After two months of being almost 100% pain free my joint and bone pain is back. It is fairly wide spread and random as was normal. My hips and knees get really sore when I am sitting or laying. My arms and legs are falling asleep really quickly and I have burning nerve pain. What the heck? This is obviously where my frustration comes in. I guess I had kind of convinced myself I could only go up. So this is my reminder that I guess I can go back down too.
My girls are still doing okay and I feel like Brooke (5) has had some improvements in mood and attitude. My family is plugging along with are better eating habits. I am beginning to believe we can do largely organic without breaking the pocket book. It comes down to my planning a little better but we will get there. I just have to remind myself to take this one day at a time and when we slip, we just need to get back up and move forward. There is no sense beating ourselves up over our mistakes. The girls are getting better at taking their remedies everyday. In about a week or so they will be all done. I'm hoping we continue to see some improvements with them both.
Our next issue is how we continue with my treatment. I wish I could be done but it is obvious I am not ready to stop everything. Hansa really wants me back in about another month or so. I still need to meet with my doctor here and see what he would like to do which I am sure will be to continue with the light therapy I had started at the end of last year. I am thinking I will be putting both girls through that as well just to try and help make sure we have done everything we can. I also have this CCSVI issue to address. It is a very complicated thing. The biggest road block comes back to finances. I hate that this is even an issue but it is. I am trusting God though that he knows what needs to happen and it will be taken care of. For right now I will continue the fight one day at a time.
I always like to end on a good note so I have a couple of things to share. An amazing person (and her family) who has become such an important part of my life have had a breakthrough in her fight against Lyme. She is lacking a major gene that is responsible for her bodies ability to detox. She is the second young person with Lyme I know personally who is facing this issue. I am so excited to see how this affects their treatment and how they feel. They have had little improvement much to the doctors frustration and this may be the answer. So I am beyond excited to see them start to get well.
Last thing I want to share is some exciting news for the whole Lyme community. This Friday, the 13th, Dr. Phil is taking on Lyme Disease. Please watch it, DVR it, whatever you can do even if you don't like Dr. Phil. He has a LLMD and news reporter/Lyme fighter Brooke Landau in addition to some "bad guys" from the IDSA. The IDSA
Lots of prayers continue to be needed and appreciated not only for my family but for all of the families fighting this disease. Thanks for following along on this crazy journey. Sorry this update may be all over the place. My brain has just not been working lately.