Stormy Seas

A few months ago I had some big ideas of where this year was going to take me. I was trying some thing new for my health, focusing on being able to once again contribute to my families finances, changing up my blog and committed to sharing my story. January and February seemed to comply with my best laid plans and then March rolled in and things just kind of go flipped on their head. At this very moment I am trying to my best to ride out the storm and when the waters calm enough for me to get my bearings, I can re-evaluate the course I am on.

After sharing some little wins with my health and the fact that my the pain I usually experience around my cycle and a full moon was gone, the winds of change blew in and the pain came back. Not only did the pain come back but everything started to go in a downward spiral. I am having days as bad as they were right before my diagnosis or during the first of year or so of treatment for Lyme. I just don't know how much more of this I can take. 

My brain is so inflamed and jumbled up right now I can guarantee my spelling and grammar will be off and the words aren't going to flow smoothly as I share whats been going on. It's important that I share this for those of you that have been following this journey, for myself so it clears my mind somewhat and for those that is may help. So please bear with me. 

For some reason my nerves are not happy. The one symptom we had managed to significantly decrease and for an extended period of time was burning nerve pain. The ghost that sneaks up and holds the invisible cigarette lighter against my skin has decided to come back and visit my regularly. I can be cooking dinner, driving down the road, or laying in bed and the searing, burning pain is so bad I am surprised there are no blisters or scars. My muscle pain and weakness has returned full force. I am back to wanting to cut my arms off because the discomfort is so bad. I am battling my seizure type activity regularly. My legs are restless and I just can't get comfortable. I am having muscle spasms all over. 

My heart is acting up again. Palpitations. PVC's. Recently I had to walk a short but somewhat steep hill and I had some chest pain. It went a way quickly but it is still scary. The only other time I have really had chest pain is when my heart rate had jumped up to 272 bpm on treadmill stress test. I get short of breath really easily and just don't feel good. 

My brain is not functioning well. I am confused, lost for words and anxious. I start sentences and stop talking mid way through with out realizing it. My 10 yr old told me the other day I keep doing that and how something is wrong with my brain and I'd better see the doctor. Oh if only there wasn't so much truth behind those words. It really sucks when I have to look up my 5th graders spelling and vocabulary words or words she needs help spelling because I just don't know any more. 

Fatigue. Or should I say FATIGUE! I maintain to this very day that if I only had normal healthy energy and the ability to sleep well and feel rested when I woke up I could live a full life with all of my other symptoms. Fatigue is the one thing that has never gone away. I have been dealing with it consistently for 20 years now. And it's only gotten worse. I am back to being severely exhausted so much so that I can not always stay awake through the day. Miserable. Most days I get the kids to and from school at least. Part of me feels like my body continues to adjust to what I am dealing with. So in someways it may seem to you like I am doing more, and maybe I am, it is not because I have made such great improvements or that I have put the disease into remission but more so that I have learned to survive with a new normal. A certain level of feeling bad becomes normal so I have to feel that much more crappy for things to take me down. Something has got to give. I feel like I am in limbo or some other "in between" state. I know this sounds horrible to say but I am committed to keeping it real so ...sometimes I wish things would get so bad that I was stuck in the hospital. Then the seriousness of what I am facing would be evident. It's like get better or get worse but don't just stay in this in between state that keeps functioning enough for people to think your doing fine and yet bad enough to make you look just plain lazy. 

I know I am at the heaviest weight of my life and extremely out of shape and both of those things aren't helping the situation so I am trying to refocus on those areas. While I do have an appointment to see my doctor next week, the reality is so much of this I just have to figure out on my own. If money were no object I would stand a better chance of getting things figured out but even then this whole mess is just so complicated. It it critical though that we make some way. Not only have I lost a good part of the last six years with my husband and kids, and the my oldest will be gone before I know it but there health is becoming more of an issue. I can't put dedicate what I need to, to help them if I can't take care of myself. And so the story goes. 

This leads me to where my kiddos are in their journeys and my current worries and stress. My 13 yr old continues to be monitored by a neurosurgeon for her Chiari Malformation and Syrinx. She recently had a repeat MRI early than expected for some unusual persistent head pain in the back of her head. All remained unchanged with her other issues which is good but we had no known cause of her pain. If I hadn't shared in any early posts, she also broke her hand just before thanksgiving in a freak accident. It was a fairly traumatic injury and besides breaking her second metacarpal she lost a lot of skin about the size of quarter on the top of her hand. Her scare continues to hurt, the coloring in her hand is off just a little, and she is now having pain along that metacarpal. UGH! She has some random aches and pains and still some dizzy episodes so we continue to run tests, and when all comes up clear I just check the Lyme related box. Unfortunately trauma can cause things to get out of control so I am really monitoring her since her accident and am hoping this doesn't unleash the wild beast of this illness.

My 10 yr old has put me through the ringer the past few weeks and I just have this gnawing feeling in my gut something bigger is going on. She along with my husband and other daughter had been sick earlier in the year with a flu type virus. We managed it at home and either I didn't get it or I did and maybe that's why I am having an issue at the moment. I have never seen my hubby so sick. Fevers, body aches, sore throats, etc...Jump ahead about 4 or 5 weeks and my baby started in with a low grade fever and just not feeling great. It would come and go on it's own, disappearing for  24+ hours before returning. She started sleeping a lot, not eating. Blood work showed an elevated SED rate (which indicates inflammation) and she had (actually still has) and swollen lymph node in her arm pit. Long story short after almost a week she was diagnosed with bacterial pneumonia. I guess it was making its round at school but it was just a little crazy the way hers presented and I am thankful that I was persistent with the doctors that something was going besides the standard virus. She lost almost 3 pounds in a week and she is a string bean to begin with so we are working hard to get the weight back and she is still taking it easy. She gets worn down somewhat quickly and just still isn't a 100%. I do realize the lymph node may totally be related to the pneumonia but I am keeping my eye on it. In addition, she has these spider angiomas. They are typically considered benign. Just maybe fragile blood vessels. I had some as a kid too and they aren't all that uncommon. At her first doctor visit for her ongoing fever and lymph node issue the doctor saw one on her hand that she thought was a petechiae that can be a sign of Leukemia. That caused her to start looking at my daughters hands and arms. While what caught her attention was just an angioma she commented about how many there were. While she doesn't seem incredibly concerned about it there were about 12 which is on the higher side. Usually there are only a few. Well today I found 3 new ones. There isn't any really clear information on what they may mean for a child. They can be indications of liver issues but so far we don't have any other symptoms to go on. So while I am trying to remain calm my mommy sense just is nagging me so I am doing my best to stay on top things. 

I am sure I have so much more I could say but I am tired and brain has decided to give up for now. I once again don't know where I would be with out my faith in God. Frankly I have cried, yelled at and questioned Him a lot lately. What an amazing father He is to love in spite of this. As angry as I get with Him somethings He is also the only thing that gives me hope to go another day. I've got some special people fighting some serious health battles I am keep in my prayers and honestly I'll could use your prayers too. Preparing to take on what ever challenges tomorrow holds for me. Thanks as always for your support.

Do A Little Dance

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

Second Chance

My life may not be going the way I planned it, but it is going EXACTLY the way God planned it.


My husband and another dad took the kids out for dinner and a movie so I have the evening to myself. You would think I would be doing something much more exciting than this but the truth is I don't feel very good and wasn't up to going any where. I also realized it had been quite a while since I wrote an update and I figured there was not better time than this. My life has been really busy and I haven't had much down time. I have to say that is a good thing. I am amazed at how quickly I could forget how sick I was. In some ways I think it is a good think. However, it does create some issues with not over doing it. In my opinion my energy is still horrible and I still wake up tired not matter how well I slept. (I am sleeping much better by the way) I try and remind myself though, that I am doing much more than I was 6 months or certainly a year ago. So my energy is better but I know I still have a long way to go. If I could only have that bouncing of the wall feeling a few days a week that would be great.

Overall, I have done fairly well since coming back from the Hansa Center. I have not had any seizure episodes. My muscle spasms are 95% better. My pain has been almost non-existent and my brain function has improved somewhat. I had a little reality check though this past week with some joint and muscle pain, poor brain function, heart issues, etc...It has been a little frustrating but I can't really complain. It is interesting that this has been happening during the full moon and solar flares that have been happening. It seems really consistent among most of us with Lyme at least that feel worse during the full moon. I am hoping that is all it is. I got my new herbal remedy for this horrible allergies I have been having. Within 3 doses my symptoms had improved dramatically but they have come back. It seems like taking the remedy things clear up fairly quickly for a little bit but they come back within a few hours. Hoping we can get them under control soon.

As far as my treatment goes...my doctor here in San Diego had wanted my to start back up on the light therapy a few weeks ago. I am holding off for at least a little while more. That treatment is not cheap and I don't have any measurable results. That makes it hard to know if it is working. I have continued with acupuncture fairly regularly and am doing my epsom salt baths and the sauna. I will admit I am not doing the sauna nearly enough so I am trying to get up and do it first thing every morning. I did reach my 60 day mark since starting my remedies so I have stopped them. So other than my heart medication, the remedy for allergies, vit d, and one other pill I don't take anything. To go from almost 50 pills a day  and IV's to this is amazing. It is really evidence as to how far I have come. I am hoping to redo some of my blood tests, like my CD 57 to see what they are indicating within the next month or so.

The really good news is I am going back to Hansa in a little more than a week. Although I only get to stay for 3 days I am really excited to get a tune up and see how much I have improved and what else we can tune up. The best news is I am taking both of my girls. Although my husband doesn't get to go I can't wait to find out what they see in my girls and what we can do to get them on the right track. It is a total blessing that my friends from when I went in January will be there at the same time. I can't even say how much I have missed them. Plus, they are helping me with the girls while I am in treatment.  You can bet I am going to blog about that whole experience when we go.

I feel like I have so much more to tell you but I guess it will have to wait for another time. If you wouldn't mind praying for our trip which is March 18-21. Please pray for safety, answers and improvements for myself, Jenna and Brooke. Also please pray for our financial situation and some big decisions we have coming up. God is continuing to bless us and it will be exciting to share all of the details of my photography venture and what God is doing over the next few months. As always, thank you for your continued support, kind words and prayers. I will try to get back to blogging more often so you know what is going on and where I am on this crazy journey called life.

Because of Lyme

I can't believe it has been a week since I left Hansa. Where does the time go? I don't think I realized how different my life would be when I came home. One of the big reasons is because I have gone back to school. Not anything crazy, just one class. But for someone who has been living the life of the chronically ill this can monumental. I am taking a class because I want to which is also different for me. This is not out of necessity. Of course things are different too because I am healing. I am getting better. I still am not sure how to say I feel physically. I am still having a lot of my symptoms but a week later I would say they are less. Next week is my typically bad week so I am excited to see how it goes. Emotionally and mentally well the positive attitude thing is a bigger deal than I ever thought. It is an everyday struggle to not fall back into bad habits. I have to fight to keep  my mind in the right place all day long. I am finding though that I am happier. My husband certainly notices that difference. People seem to be nicer. I'm getting lots of smiles, and hellos, and people wanting to start up conversations. So I am now a true believer in the power of a positive attitude. Gosh I have so much I want to say about some life long friendships I have made, and details on what specifically has improved but I am going to save that for another day. I have been thinking all week about this experience, the power of the positive and how blessed I am and I started realizing there are a lot of things I have because of Lyme. I feel like they are important to share with you all. So here it goes.

Because of Lyme:
My faith in God grew
I've learned to give up control and totally rely on God
I've learned what is really important in life
I've learned what real friends are
Because of Lyme:
I am making healthier choices for myself and my family
I've seen a whole new side to medicine and healing
I've learned to be okay with needles
I've made some amazing new friends
Because of Lyme:
I've learned to be positive
I've learned that I am good an empathizing and sympathizing with people
I've found that I can be a great support to someone else
I've learned how to live with less
Because of Lyme:
I've learned to speak up for myself
I've been given the opportunity to chase my dreams
I've learned how truly blessed I am
I get to help lots of people

I guess I could go on and on, but the point is, Lyme has given me so much more positive than negative that I wouldn't trade it this experience even if I had the chance.

17 Days and Counting

I knew I was behind on an update but I didn't realize it had been a month. A lot has gone on in the past few weeks. Where to begin...Well I took the leap of faith and started acupuncture. I can't tell you how happy I am that I did. I was so nervous going to that first appointment. I still get anxious when they are going draw blood or access my port. So of course the thought of having even needle stuck in some odd place was going to cause a little anxiety. Before I went in I filled out my health history. I was surprised at the amount of detailed information I had to give. I gave the acupuncturist more information than I had ever given any doctor. It was actually somewhat comforting. I brought that with me to my first appointment and we reviewed it before we did anything. I guess while I was on my antibiotic break, this guy had started working at my doctors office doing some pain management type work. We had had a chance to talk a few times before my visit so he knew how apprehensive I was and he already knew I had Lyme. After reviewing my history he checked my pulse and a few other things. Of course with being nervous my pulse was really high. The first thing he did was called cupping. I had heard of it but didn't really know what it was. It involved placing briefly heating up these glass bowls or cups and placing them quickly on my back which created a suction. You leave them on there for 5 or 10 minutes and then take them off. They are supposed to help release the stagnant blood and I believe increase circulation. He told me he knew I would bruise easily so don't be surprised it I had some marks. I did have these big circular almost hickey looking marks all over my back. They didn't hurt though. This procedure was also supposed to help with some of the tension in my shoulders and neck. I have done it on all of my visits except this last one and it has really helped a lot. After the cupping we did some needles. He made sure I was comfortable and didn't do to many because he didn't want to overwhelm me. It was nothing like I had thought and wasn't bad. He told me I would know in probably my first visit if this was for me or not. I was quickly a fan and am still going once a week. I don't know how other practitioners work but as long as he is around I won't see anybody else. His knowledge is amazing and it is evident that he wants you to get a lot out of your experience. He reviews how you are doing before starting, during, and after and makes adjustments as needed. I can say enough about what I positive experience this has been. So for all you San Diego people here is a shout out to Michael at Eight Wave Health in Encinitas. I highly recommend seeing him. He has helped with my diet, and overall healthy living. He has helped reduce my pain and is working on a couple of other issues as well. I couldn't be happier that I gave it a try!

Along with the acupuncture, I continued with the light therapy. I completed 6 treatments over about 3 weeks. I have doing okay symptom wise but I haven't had any significant breakthroughs. At the end of 6 treatments I had an appointment with the doctor to see how he wanted me to continue. He decided instead of taking a break and doing six more that he would start treating me with another type of light therapy. So yesterday I did my first treatment with the new machine. Now this one is different and is administered by the doctor or nurse. There are no glass bottles taped to me. This machine uses coherent and in-coherent light. I can't explain to you the science behind it but there is a lot of positive feed back about this kind of treatment. It is even safe for kids. It can even be used to counteract the bad stuff from vaccinations. I am really hopeful about this. One of the first things we treated with this were all of my scars and my neck from whiplash I've had once or twice. Then we treated some of my viruses, the vaccinations I have had, etc. We will begin focusing on the lyme in future treatments. I haven't been feeling great so it is hard to say weather today is because of the light therapy or something else.

In regards to how I have been feeling. I was thinking I was back to about where I was before treatment but it appears I am not even that far yet. And that isn't my goal. I need to be much better than I was before treatment to really feel like I have gotten somewhere. If you could take me back to when I was about 20, it would tolerable. But realizing that i have been sick for so long, what I felt at 20 wasn't right either. I don't really have an idea of what healthy feels like. I know now the things that bothered me then were signs of a problem even though no doctor would agree to that at the time. I am really set on getting healthy and staying that way. As I was saying, I have been doing okay. I have made some changes in my diet and have lost about 4 pounds. So that makes me happy. I had a little bit of pain and all during my cycle but nothing extreme. Then all of sudden for almost the last week I have been going down hill. I have had some pain, a ton of palpitations and heart racing episodes. I have had some dizzy spells and extra fatigue. In fact Tuesday night I had the worst creepy crawly, weak feeling in my arms and legs that I have ever had. It kept me up most of the night and I was so ready to cut my legs off at the knees and my arms off at the elbow or maybe even the shoulder. That feeling has stuck around since then but is not as intense. I'm getting transient bone pain and muscle aches. I have been muscle spasms at some place on body probably everyday for almost a month. So needless to say I am a little frustrated. I can't say what the cause is since it seems to be out of the blue. A flare, a herx, reactivation of a virus I have no idea. I guess it just a reminder I'm not done yet. I'm sure the stress surrounding the holidays, money, my trips arent' helping. I never know if stress caused it but I certainly know when you feel like this you get more stressed. Such a vicious cycle this is.

Onto something a little happier. I am officially going to Kansas. I fly to Wichita on January 1st and begin treatment January 2nd. I have been in contact with a girl who a has recently gone and has had great results. That gives me a lot of hope and I am so excited to go.The great thing is, some of what my doctor is doing here with the light therapy seems directly in line with what they do at Hansa. My hope is that for the two weeks I am gone, I get a great jump start on restoring my health so that when I come back we can finish up. I get to stay in a nice hotel where all of the rooms are kind of like studio apartments. I have a full kitchen and all so this will a nice retreat to really focus on my healing. I can't say I won't be lonely and somewhat distracted by leaving my family behind. However, I believe that this is where I am supposed be and it will be worth it if I can come back feeling better. I will doing my best to update regularly when I am back there. I will at definitely keep a journal so I can always blog about it later if I need too. I am trusting God that this is right thing to do and that not only will he take care of my family while I am gone, but that he will continue to provide for us financially. Between the light therapy, acupuncture, and this trip the available funds for treatment will be down to nothing. God has provided for us this far and I believe he will continue to do so. In His time, according to His plan and will for my life.

To end on a happy note, I have a new excitement and passion for what the future holds. In fact, I even signed up for a college class for next semester. I am ready to put in the effort to make my dreams a reality. If I don't get to update before I leave I pray you all have a very Merry Christmas and a Happy New Year.

You can continue to support me and my family by praying, by buying some of photography, or by making a donation to help pay for treatment. You can now donate directly to a donation account at US Bank. Just tell them you would like to make a deposit to the Jessica Madson Donation Account and give them account number 153466674998. Thanks for following along on my journey and for all of your support.

An Exciting Disappointment

I have a lot to update you on but I am going to do it a little backwards. Some amazing friends put together a fundraiser for me at the Belly Up Tavern in Solana Beach. It is a very cool place and I will give you the details in a minute. Let me start with what happened today. I was forwarded an email by one of the event organizers. The email was sent to the Belly Up from the tv show EXTRA and they wondering how to get a hold of Jessica. They used a different last name but the Belly Up assumed it must be me since we just did my fundraiser. Now I thought it was weird because the only show EXTRA I know of does celebrity gossip type stuff. Either way I kind of freaked out. I prayed that if this was meant to be that I do the right thing with it. I must admit though I am a big dreamer. I mean I don't sit and daydream my days away. But I guess I have a wild imagination and more than once I have spent time planning on how I would spend my lottery winnings, or what it would be like to live in the HGTV house that they give away. I have recently been planning on what I would do with my Publisher Clearing House winnings, however I have yet to enter. So you can see how easily I get myself wrapped up into these ideas and I can get really excited. My head was spinning with ideas on what I would say, what I would wear what this would mean for my family and the Lyme community. So I emailed the rep and gave him my info. Shortly after my email I got a phone call. I answered the phone and was talking to this person from EXTRA. It was obvious very quickly I was the wrong Jessica. They wanted a Jessica that had talked to Prince Harry. (He had been at the Belly Up the weekend before). Very quickly my excitement turned to disappointment. I knew it was a long shot but for about 30 minutes I was on cloud nine.

Onto the fundraiser. I have some amazing friends. I will say that the Fire Prevention Division of the Fire Department is kind of like the "red headed step child" of the family. It doesn't really matter though. My amazing Fire Prevention buddies of the last 11 years have been a big support to me and family. Yesterday was no exception. They put together a fundraiser with a couple hypnotists that work for some local Fire Departments at an amazing venue called the Belly Up Tavern. Although the crowd was small the love and support from my friends and families was amazing. Plus the show was really funny. I haven't laughed that much in a while. It was a great time and I could not be more grateful for the amazing people that God has placed in my life. I would say the fundraiser was a great success and we can certainly continue my treatment for at least another month.It's not enough for me to get to Kansas but I am still hopeful. I am blessed beyond measure. I have a lot of thank you cards to write.

Now for a treatment update. Well this wonderfully expensive IV antibiotic has been given me a little bit of a rough time. I have heard some good things though and been encouraged to keep it up as long as I can. I will start by saying my first month order from Target got screwed up and when I went to pick it up they told me that it was $4000. How can there be that much difference between brands and generics or whatever. So they had to reorder the right stuff which only took a day and I got 30 doses for the bargain price of $1427. My doctor is still searching for a cheaper place to get it. Totally praying we find that before this month runs out. I went in for my first day a few weeks ago and was in for a little bit of a surprise. First off this medication is bright orange/red. Perfect for Halloween I guess. I found it fairly quickly it changes most bodily fluids that color. (TMI I know) The funny thing is, it may change my tears colors as well. My husband has been trying his best to make me cry to test that out. Wonderful! No such luck yet. The other surprise is that is has been hard on my stomach. I assumed with it being an IV it would bypass my gut but no such luck. So extra probiotics have been in order and it seems to finally be settling down. I have felt fairly bad for the last few weeks and I think it is about time for my lyme flare so I think I have been feeling pretty rough for about 6 weeks straight now. Some old symptoms are back. I have continued with some bad twitching/seizure episodes, the creepy crawlies, constant nausea, needing to nap, insomnia and some other stuff. Plus I have had some new symptoms like daily headaches and my sound sensitivity is getting worse. Even white noise type sounds hurt my ears. So that has been a little aggravating. Plus for about the first 5 days, my IV's were taking about 2 hours. I discovered I can handle a higher drip so I now can get it done in about an hour. My skin is not happy about my bandage though. No blisters yet but I am worried that having it on there everyday with only about a 24 hour break is not going to work so well. Time will tell.

I got to attend the San Diego Lyme Walk with my mom, two daughters, and my friend Dawn. That was nice because I got to meet some other Lymies in person that I have been chatting with on-line. I also got to meet some new Lyme patients in my doctors office. All I can say is there is way to many people with Lyme. At least 9 new patients getting IV's just since I took my little break. From a mom whose 14 yr old daughter is getting a PICC line and has had a really rough time since she was 10 to a mom who was just diagnosed, is in a wheel chair because of it, has had it about as long me, and found out she gave it to her 20 yr old son while she was pregnant. Then there was the family I met today. The sweet man must be at least in his 70's. He was diagnosed with Parkinsons after some health problems the last 5 years or so. The couple is from South Dakota and staying with one of their children while he gets treatment. They have been for here since May. It just breaks me heart but we a group that really supports each other. There was 5 other patients getting IV's during my first one with the new abx. They all wanted to know what I was on and some of them are headed this direction. The other day I got in and out early but there were 9 people with Lyme on the schedule for IV's. Very sad, but we keep each other entertained in the "IV lounge".

On a different note I got to help out a food packing event with an amazing group called Friends and Family Community Connections. My family has been involved with this local non-profit for a number of years. My dad has gone to Tanzania Africa two or three times and helped build schools for the children, bring them food (that is who the food packing us for), etc. I am so proud of him. So we got to help at another food packing event this weekend and I was reminded how much I like helping people in need. I have decided to try and spend some of my "free time" volunteering in ways I haven't really been able to before. I am really excited to see what opportunities I have to help others. It will certainly help me stay positive and not focus on my illness so much. I am looking forward to helping at Operation Christmas Child at our church next weekend. KLove radio will be there and it should be a great time.

I'm going to end with a plug for www.AlwaysPositive.org. I saw their booth at the food packing and took the following pledge. I encourage you to check them out. I believe in the power of a positive attitude and possess the courage to cause positive change. I will exhibit humility when I triumph and strong character when I fail. I will begin every day with a sense of gratitude for my gifts and the desire to use them to their fullest. I will end every day with the satisfaction that I gave it my all. When I fall short, I will respond with integrity and determination to improve. I will strive to inspire others to adopt a positive attitude as I commit my talents and influence to have a positive impact on the world I touch. I Am Always Positive!

Going Backwards

What a first "week" back to work. I say "week" because I am only working three days but that is all I can handle right now. Actually, I am not even sure I can handle that. I guess it is not fair to judge how I am doing off of only 4 days but it was a lot tougher than I thought. First off, my Lyme cycle seems to have shown up early and has decided to stay late. I thought I was going to escape my first few days with no real problems. Wrong! The joint and bone pain that started back in over a week ago has managed to stick around. That is so frustrating. I was so excited to think that the Vitamin C was going to help eliminate it. Maybe it's the cyst buster I  started taking causing a herx. Who knows for sure but I was just excited to think it was gone. I was definitely more tired than I thought I was going to be. When I get off I am ready to skip dinner and go straight to bed. Problem is it's only 3:30. I was just tired and in pain. I have also had a sore throat off and on. This morning I woke up with the sore throat and a headache. By noon I was feeling horrible. I just wanted to be in bed. I took some Advil and went to take a nap in my car. How sad it that? I have to go into the parking garage and take a nap in my car at lunch. I did make it through my day but I honestly didn't expect to be awake right now. The headache is gone for the most part but my back hurts, the bone pain is starting in, my muscles hurt...on and on the list goes. Other than having a major heart freak out today, so far I have had almost every symptom I have ever had. My face started to go numb for a few seconds, I had occasional burning nerve pain, ringing in the ears, burning sore eyes, brain fog, a twitch now and then. It was just a rough day. Unfortunately it wears me down mentally and emotionally. I am expecting the rest of this week to be rough. Maybe some of this has to do with my chelation for heavy metals as well. Regardless of the reason I get a two week break from my Tindamax (cyst buster) and hopefully my Lyme cycle will be done hear in the next few days so next week I can get an idea of how I do when I am feeling somewhat decent. It has just been a rough start. I have labs I have to do that I keep forgetting to do this week and I am hoping to hear a little something from the doctor on Thursday.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world.  I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment.  Be back soon I'm sure.

Two Steps Forward, One Step Back

I know my title is backwards from what you would normally say but in my attempt to keep a positive attitude I decided that I very possibly have taken two steps forward and the last day and half is only one step back. I don't really need to tell you that my hyperactive crazy good feeling that came on Wednesday did not last.  I knew it wouldn't but I was hoping for some continued forward progress at least. Unfortunately in a matter of about 24 hours things kind of got turned upside down again. I can say though that I am handling it better. The ups and downs and disappointments that is. It's so funny how when you think you have learned your lesson or that you can't grow any more God says, "Oh ya, watch this!". Okay God, I am trying to listen to see what lesson you have for me know. I will admit though, that it doesn't seem to take as much to get my attention. I am ready to see that God has something for me in much smaller things so He doesn't have to take a 2x4 and hit me upside the head like he did a little while ago. I would say that is progress.

So Wednesday was crazy in a good way as you already know. I was able to make it my daughters softball game, it didn't get rained out, she scored a run, and they won. Great evening! We get home, eat dinner and then Brooke (4) starts grabbing her ear and crying saying it hurts. She had tubes put in at about 17 months and she still has one of them in. Of course the ear that hurts is the one that the tube came out of a month or two ago. She was in a lot of pain. She has never complained about anything like she was that night. Just in tears over how bad it hurt. It was 10 and too late to take her to Urgent Care. She didn't have a fever just in a lot of pain. It was a long night to say the least. She woke up yesterday, still in pain, with a fever and then started throwing up. And so the fun began. Off to the doctor, full on ear infection, got the abx. The pain is subsiding a little and she is a little perkier today. She has continued to throw up though. This child has the worst time with upset stomachs in that she can go 24 hours without throwing up and then it starts again. Lots of probiotics to say the least. Hoping things calm down as the day goes on. I hate it when the kids are sick but I do love how cuddly they are. Unfortunately my wonderful feeling didn't last and I was in a fair amount of bone, joint and muscle pain. Plus I had some familiar pain that made me think I have/had an ovarian cyst. It wouldn't be the first time. Just what I need. Feeling a little better today though. I guess the blessing in disguise is that with Brooke being sick I couldn't work out.

I guess I need to back up and say I have been trying to get things back on track with a rough week last week and also with feeling better. I haven't done everything I should be doing on a regular basis, I admit it. Well I decided I need to start the physical fitness part of this recovery so I can build up some strength again before I get thrown back into my "normal" life. There is a gym really close to my house that is only $10 a month and no contract. I went in and checked it out on Wednesday and was so excited to sign up and go for my first work out yesterday. Well the sign up got postponed with Brooke not feeling good and so did working out yesterday. I guess with how I felt a little later in the day I guess that may have been a good thing. Let me just clarify my workout right now will involve walking about 45 minutes on the treadmill. I may do some lower body strengthening but can't do anything for upper body with my port. I realize this is just a little hiccup and I am hoping to sign up today and go tonight or for sure tomorrow.

To tag onto the idea of getting things back on track I have been of course trying to still work on the diet thing. It always feels good when we eat at home and eat healthy but sometimes life just seems to make that really tough. Last week was one of those times with softball 4 days, 3 of them nights which makes the family late on everything. Anyways, I have trying to do some more research on Lyme and different protocols and relapsing and hitting rock bottom and just everything. I am excited for my progress but as I kind of mentioned I am a little shocked I guess that things are improving. I guess the bottom line is I shouldn't question it and should just consider myself blessed that my treatment appears to be working. So many other people just don't seem to be getting better so it becomes confusing. I guess my mind set is that I need to do everything I can including everything I should have been doing but haven't to help my progress continue to move foreword. One of the things I have been considering is buying a portable FIR sauna. (Infrared Sauna) I have used one a couple of times and have liked it. It is supposed to be great for helping to detox and anyone can benefit from it. Now our friends bought a nice one and have offered it up for me to use. I still haven't taken them up on that offer and I don't know why. I am limited with my number of days I can do it with my port and I just haven't gone. I think having one at home I can do whenever I want and I don't have to drive anywhere would be the best. I know a few lymies that have them, and love them. The surprising part is you can get one for under $200. At this point, I think it is definitely worth the investment. So helping detox, working out, getting better on the diet...what ever needs to happen. My doctor also said he may be getting a coil machine which I can use. I'm not going to take the time to try and explain it all here but you can look up coil, Rife, or Doug Coil machines on line to see what it is all about. It has to do with different bugs, parasites, whatever, having their own frequency that they emit and if you send that frequency back it destroys them or something along those lines. Look it up if you want the real story. :)

Back to the ups and downs or forward and backwards I guess. My emotions were turned upside down and I was thrown for a little bit of a loop last night in regards to work. I will say that my leave without pay was approved until June 1 which is great. At the same time I am really feeling like if I don't get well enough to get back by then that I may be done. That is just me. That is adding to the pressure and my resolve to get done with this sooner than later. Some other things with work didn't go as I had hoped and just the way my mind works I took it very personally. I am very lucky my husband is so grounded and can offer my a totally different perspective. The tears didn't last long but I am still a little emotional from it all. I had finally started feeling like some of the stress and worry had left and I was okay with where things were headed. All of this kind of just rocked my stability and made me questions everything all over. I realized fairly quickly though that God is still in control. Me worrying about things won't change the outcome and is probably not good for me anyways. I think this is God's way of saying, hey don't forget about me just because things are looking up. It's not that I am not praising Him in the good times but I have a tendency to start relying on me again when things go good. Well God got my attention quick this time and I still need Him as much as I did a month or two ago.

To switch subjects a little, I will say I think I have decided against Germany. I am so glad for my friend who has had great results over there and I pray they are lasting for her. My decision comes after receiving some advice from a very trusted person, not having access to that kind of money, and starting to see some improvements. So for now, I will pass on Germany and continue here. I must remember what a miracle it has been this past year and a few months to get where I am. Just to recap...I was referred to Dr. Joni Labbe (a chiropractor/nutritionist) who said in our first 20 minute consultation she thought I might Lyme. Although, I chose to move my care, if it was not for her, I don't believe I would be where I am today. She is amazing and has an incredible practice. If you just don't feel good and can't figure out why I would highly recommend seeing her. Once I felt that Lyme disease was the correct diagnosis, I had done enough research to know I needed an LL doctor, which is lyme literate doc. Those doctors are hard to come by and hard to find based on the fact that they often come under attack for their treatment. I went through the channels to get access to the "super secrete list" and found there were only two LLMD/LLND's in San Diego. I chose the lesser known of the two and have been blessed by her knowledge and care ever since. Extra cool that she is a Christian. She in turn referred me to Dr. James Novak in Pacific Beach as a primary care doctor. This was after my pc at the time told me my positive test results weren't true, that I didn't have Lyme, or anything seriously wrong with me at all. So glad I stood up for myself. Dr. Novak has been incredible. In fact, he is so well versed in Lyme that he and my LLND are treating my Lyme together. He did my port and does my IV's. He is the one that ordered this latest and greatest test. So I have been blessed with two doctors that work together. I keep each of them informed on what the other is doing and they usually support each others treatment ideas. In fact I have a long over due phone appt. with my LLND next week. I can't wait to talk to her and see what she has to say on a couple of things. I will certainly keep you posted after I talk with her.

Well know that this post has gotten really long and I have bounced all over the place, you at least know whats up. Keep the prayers coming as I can use them. I still need prayers for healing, discernment, finances, and just listening to what God wants me to do. Oh ya, and to stop worrying. He is in control. Thanks for following along and sharing this journey with me. I always appreciate your comments and questions.