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.

Frustrated but still fighting

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. 

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.

The Mirror Does Lie

"The Lord is Kind for ever and ever; the nations will perish from His land.  You hear, O Lord, the desire of the afflicted; You encourage them, and You listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." Psalm 10:16-18 NIV

I've decided to start my entries with a Bible verse, song, or some encouraging word. That way there is always something positive that you can take away. I have a lot of supporters who read this just to keep up with my journey but I also have a lot of Lymies that read this too. No matter who you are or what your circumstances are I hope you can find some comfort in the words I choose to share.

Moving on, things have been really rough lately. Not just physically but emotionally and mentally too. This disease lets nothing rest. I had the chance to see some friends I don't get to see but maybe once a year this past weekend. It was nice to have a chance to see them even if only for a little bit. They were eager to see me as they have been following along this journey. As seems to be the norm lately, I was told how great I look. I hear that a lot. I have even noticed myself, that I do "cleanup" pretty well. I'm sure people are just being nice but if there is  any truth to what they say then I can't imagine how amazing I might look if I was well. The truth that has just been in my face this past week is that the mirror lies. My doctor says I look good and I must admit sometimes I agree. It just makes it difficult to even look at yourself and think I don't look sick. And if I don't look sick how on earth can I feel so bad.

Again I have faced some really tough days. Yesterday I actually had to call in sick to work. I woke up in pain but had every intention of pushing through like I have so many other days. Then out of the blue, I got dizzy and nauseous and my heart was not happy. I had a bad headache and backache and didn't get off the couch until dinner time. There were moments yesterday where I thought I could be dying. Everything in my body seemed to dysfunctioning (if that's even a word). It gets downright scary. I find myself either praying to God to get me through this with out panicking and to just let me fall asleep. Then there are very brief moments when I think God if this is what the rest of my life is going to be like take me please. Of course I don't want to die right now. I want to be here with my kids and husband. I know I have something else to accomplish. There are just times when you physically feel like you body is going to just start shutting down and your not sure what to do. I got up off the couch to go to bed and ended up in the kitchen with tears streaming down my face from the pain. God, it is not okay to be in this much pain. It's not. I can't handle anymore pain. I woke up this morning so obviously I handled it or God handled it for me I guess.

All of this once again raises concerns about the future. Will I ever be able to work again full time? Right now I don't see that in the near future. I don't know that I see that happening this year. That really leaves a lot to be discussed.  Once again the financial strain that this has caused my family just adds to the stress. This stress is felt by my parents as they have taken us in and on multiple occasions had to come up with hundreds of dollars for treatment and doctors. I find myself maybe hiding the truth. I don't want to run to them every time I run out of a supplement or medication and don't have the money to pay for it. In a perfect world my supplements would be a standing order shipped every month with no questions asked. The money would always be there. As I have said before this scenario is true for almost every person with Lyme out there. Although there are some rich and famous people that have been afflicted with Lyme there stories just don't seem to be as bad. I have to believe that is largely in part due to the fact that can seek the meds and the treatments that the rest of us can only wish for. Maybe I am totally wrong but I am not the only that feels this a disease for the "rich". The insurance companies are not on your side. As a wife and a mother I struggle with putting myself first. So when I have to look at what the cost of treating my disease maybe taking away from children it is hard to put it first. My kids deserve so much more than they have gotten that it is hard to know that I have taken something away from them to try and fight this. It wears on your mind. I mean if there isn't a cure then am I just wasting time and money? I know that is not the case. I believe I may be able to get back to fairly normal life. I am not ready to give up but this just shows you the kind of head games you can get sucked into with this.

My one doc is out of town until the middle of July so I set up a regular appointment with him for when he returns. Although he usually pops his head in during my IV it is not a true appointment to reevaluate where we are going. I also need  to schedule an appointment with my LLND. I guess I need to have the discussion of if I can't take or do everything what are the most important or beneficial things I can take or do? I have also scheduled an important with a cardiologist who is supposed to by Lyme knowledgeable or friendly. I just can't shake the concern that Lyme is damaging my heart in some way that we just haven't seen yet. What test have we not done? I mean all of the other cardiologist said my electrical issues were not life threatening and I didn't need to be concerned that my heart can go over 200. Although the cardiac specialist had never seen a heart rate as high as mine had gotten, 272 bpm, I should not worry. The only issue with a high rate like mine is that the heart muscle may wear out quicker than normal but again I don't have anything to worry about. Does that make sense to anybody? Plus the leading cause of Lyme related deaths, besides suicide, are cardiac issues. The few I have heard about don't seem to be people that got deathly ill and died without having a chance to undergo treatment. These are people, that had lyme for a long time, like me, and were in ongoing, long term treatment. Maybe even a few years into treatment they lost the fight. I just want to cover my bases.

I'm still working through this all as you can tell. This has certainly been the longest roller coaster ride I have ever been on. I question too how soon I can afford and should I get my kids tested. I don't want them to go through what I have been through. Part of my wants to stop my treatment and focus on them for a while. It's like the scenario on the plane of putting your oxygen mask on first. I can see it both ways. If I'm not better how can I support my children should they be diagnosed. Then again, if my treatment drags on for years, which it certainly looks like it is going too, how much damage could I be doing to them by not getting them treated right now. Lots to pray about and figure out.

Well I think I have thoroughly exhausted my brain for now. There is rest that is needed, plus errands to run and even a quick trip into work today and tomorrow. I hope everyone has a great fathers day weekend. Please let you dads and husbands (if they are fathers) know just how much they mean to you. To all of you, whose dad has passed, my heart goes out to you as this can always be a tough day. Thanks for all of the support.

Status Quo

Well another week of work has come to an end. I have once again survived. This week was a little tougher than the last. I did manage to have two days or so last week where my biggest issue was being tired. That was improvement from the previous few weeks. Unfortunately it didn't last long. Symptoms have ramped back up this week. The tiredness and fatigue never goes away. Some pain has come back. In fact today I have had a lot of the burning nerve pain migrating around. Yesterday I had a little tremor and twitching episode at work along with some weakness. I also had one little spot on the tip of my nose that was going numb on and off through out the day. This disease is so weird. I have had a lot of muscle aching back in my arms and the shortness of breath is back. I had to walk up a hill at a job site and got my butt kicked. So frustrating. I can't keep up on my supplements due to the money issue. I am hoping that once we get into me having a paycheck again we can get into a routine of being able to by supplements before they run out. I haven't had a chance to talk to the doctor about my labs with the heavy metal. Hopefully I can do that soon. Really, I just realized I have a lab slip for blood work that i have had for at least a month. I keep forgetting to go. Hate Lyme brain. Well anyways, I picked up something new today to try for detox. I also have inquired about the cost of HBOT but the place in San Diego I e-mailed hasn't gotten back to me. I hear it's really pricey but it is worth looking into. I just don't know if I can do it while I have my port in. I'm looking into it. I went and saw the eye doctor yesterday and my prescription has changed a little bit but the good news is there seems to be no damage from the Plaquenil I was taking. Not much else has changed. The symptoms just keep hanging in there and I'm not feeling much better. Some days has just knocked me out and put into bed as soon as I get home. The money and cost of my treatments is still a mess. There just isn't enough to cover it all but God has continued to provide and I am better off than a lot of other Lyme patients. We could still use your help though so if you are so inclined please check out the links to my photo site and purchase some of my work or go to my donation site and make a secure donation to help me cover my medical costs. I am hanging in there but could certainly still use your prayers. We have recently gained some ground in the Lyme community but we still have a long way to go in the political battle. Don't forget to watch the award winning documentary "Under Our Skin" as it is now available on demand for a lot of cable companies and also available for instant viewing on Netflix. I'll continue to keep you posted. I think there is a few other things that I wanted to say but at this point my brain just isn't cooperating.