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.

It can't be good can it?

Happy Easter! I hope you had a wonderful Easter weekend celebrating the fact that He has risen. I was able to spend some time with friends which was nice. This past week has been a little busy. It has been hard having the kids off of school. The weather went from great last a week ago to overcast and cool the whole week. It wasn't bad but we ended up in the house a lot more than I was expecting. I was hoping to do something fun with the girls while they were off but things just didn't come together. I think they still had an okay week off though. It will be nice when they go back to school tomorrow.

Nothing much has changed since the end of last week. I still have to get myself together as far as tracking my symptoms  go and just making sure that I have a really good and simple plan in place for getting all of my meds, supplements, and food in everyday. I just can't seem to do that stuff if I am out and about. That obviously won't work when I am back at work. I am still waiting to here back some from work about some of the final details for me coming back. STRESSFUL!

On a different note, I have been waiting for some basic blood work to come back. I figured the doctor would go over the results when I came in for my IV on Tuesday. I haven't seen the doctor in the last few weeks. Usually he pops in when I am getting my IV and just checks in but I think the last two weeks I haven't got to see him. On Saturday, I took the girls to a birthday party and while I am sitting there my phone rings. I look down and see that it's the doctors office. That is funny but it must just be the automated system telling me I have a message. His office uses a message system to give you blood test results and stuff but I still thought it was weird to be calling on a Saturday. I answer the phone and it's the doctor. My heart kind of stops and he says he got my blood tests results in. Now I am silently starting to panic. This can't be good if the doctor is calling me, himself, on a Saturday afternoon. Well basically everything looks fine. Really? I guess I have a pretty amazing doctor to call on a Saturday to tell me that. My CD-57 has gone up a  little more to 61. Over 60 for a Lymie is good but it needs to be back up too 200 or so when we are "all done" with treatment so to speak. At least my immune system should be starting to function on it's own a little bit. My concern with that is, if my immune system starts fighting some of the Lyme or co-infections itself am I going to start to feeling worse again? I guess time will tell. The only test that was low was my Vitamin D. This is somewhat concerning because I had boarder line numbers for Osteoporosis last year and I eat a lot of dairy. I have been taking Vit D supplements for a while and now the doctor wants me to increase them. I will ask more about that on Tuesday. I am guessing there is something I may need to take to help the absorption. The doctor asked how I was doing and if I was still feeling better. I explained that I was feeling better than I did 6 months ago but that I had this increase in my joint and bone pain. I had maybe more days with no pain but more days with intense pain if that makes sense. He told me to remind him and on Tuesday that he is going to add a Vitamin C treatment to my IV after my meds and send me home with some to do at home. I will find out more about that on Tuesday as well. Needless to say the call was good.

Despite the fact that I am supposed to go back to work in a few weeks we are still struggling financially and will be for a while. God has provided every step of the way even if it is not how I pictured things going. I am super excited and blessed that some of photos have sold. I do paid from my work even if it is only a few dollars per order. I am more excited that people are buying my work. I can't wait to get a chance to take some more pictures and add them to albums. People buying my work is probably one of the best feelings I have had (next to getting married and having my daughters). It gets me dreaming again, something I had stopped doing. Dreaming about the future and believing in possibilities. You can check out my work at my link on the top of the page. I love feed back and to know you visited even if you don't buy anything. (http://surfchaser.fototime.com/) To take a chance and try to help pay for some of my medical bills and treatment I also set up a donation page. You can click on the donate now button at the top of my page or go visit my page at www.gofundme.com/mylymetreatment.

I will keep you updated on the what the doctor says and work and well just life for us. Thanks for following along on my crazy journey called life. Oh and Happy Birthday to my wonderful husband.

Lyme and Life- You can't have both

Now don't get me wrong, I do realize life goes on when you are sick and a lot of it has to do with your perspective on things. It's just that there are times when it doesn't seem like you can do both, especially with Lyme. I think I have just been a little extra stressed lately and things seem a little overwhelming at the moment. Having Lyme Disease is like having a full time job. Being a mother and wife in and of itself can be a full time job. Still many of us have to work full time as well. The thought of trying to do all of it has me a little worried. Before I was diagnosed, I did it all but not well. Neither work nor my family got my best, I was stressed out and felt bad most of the time. Prior to being diagnosed though, I was really only being a full time working mom and a wife. Once you are diagnosed and treatment begins, things change radically. When you realize what you have to do to get better, treatment can quickly take up most or all of your time.

A set of highly referenced guidelines for Lyme quickly outlines a few things that are a must for successful treatment...sleep is number one. You can't get over tired. (Ya right) Not just sleep at night, but napping at least an hour everyday and before you get tired is essential. For most Lymies, that is difficult as insomnia is one of the symptoms we have probably been dealing with already. So now, in a perfect situation, you would be getting 10 to 12 hours of sleep a day and sometimes more. There are plenty of days when you don't get out of bed or off the couch. Eating right and taking all of your meds is extremely important. If I took all of my meds and supplements at the right time everyday on my IV days I would be taking stuff about 11 different times through out the day. Exercise is important but is very hard to do. It can be almost impossible for some people yet it is needed by almost everyone. Some people need fairly aggressive physical therapy to help with what was lost. Now you have to squeeze in detox. If you are not helping yourself detox all of this crap out of your system then you will feel so bad so much of the time you really won't do anything. FAR Saunas, rebounding, lymphatic drainage massage, colonics, enemas, Epsom salt baths, dry brushing...that is just some of it. Although this may seem like a want instead of a need to a lot of people many of us will tell you different. Taking time to connect (Facebook, on-line, yahoo groups) to other lymies for support is super important. You don't want to constantly complain to friends and family and fellow Lymies know the hell you are going through. You need to keep on the latest research, treatments, tests, and laws. You need to be educated and you need time to escape. There are times when all of this can take up a day. Now add in you roles as a parent and spouse. Something is going to suffer when you do both. When I try to be the mom I want and my kids need my Lyme suffers. I look at the pill box and realize I missed a dose of something. My IV's are spread apart farther than is ideal. I forgot to eat. I didn't get a nap. When I try to be the best Lyme patient possible my kids get to much fast food, I would be missing my daughters games, we miss church, the t.v. becomes the babysitter.

Now with my possible return to work getting close, I would be lying if I said I wasn't worried. June 1st is just around the corner. Even if I continue to have better days, and start feeling consistently better, for at least the next few months, nothing changes in my treatment. I will be still doing my IV's and continuing with all of current meds. In fact, I have just added a few more supplements, that should help me feel better but I will be up to 36 to 42 pills a day (depending on how I feel). Plus at least 5 liquid herbal supplements that I take twice day. The need for sleep, detox, and emotional support wont change during this time. In fact sleep may become more important as I am doing more. The requirements of my family won't change either. There will still be games and practices, vital time with mom and dad, church, family meals...Something will suffer. This disease just doesn't allow you to be sick and have a life. I am scared about the future. There is no way around it. I am praying God really gives my family some direction and we figure out what we need to do.

My story is in no way unique. Any Lymie will tell you their own story that sounds so similar. I don't doubt that there may be other diseases out there that can do the same thing to ones life but I  can only speak about the one I have and the havoc it is caused in my life. It is a vicious cycle of trying to be a compliant, diligent patient so you can get better as soon as possible yet trying to hold your family together and not let life pass you by. I don't wish this disease or this situation on anyone.

I'm not giving up or losing hope. I am just having a little set back as I try to work through this all. Almost a year in and things just seem to be getting crazier. There is no end in sight and for now that is okay. I guess it is like running a marathon...you don't see the finish line when you start out. It's like my doctor always says to me, "Your treatment is not a race." I guess he's right. To some degree, treatment will become a way of life. I will not be doing as much as I am now for the rest of my life but you don't know if you ever get rid of Lyme. If my kids have it, the cycle will only start over for our family. I look forward to the day when this disease is not the number one thing on my mind. To go a day without it being at the forefront of everything I do and every decision I make will truly be a blessing.

Now to take some pills, detox, take a nap...all in 2 1/2 hours before I have to become a mom again. :)