A Different Person

Lyme Disease and Chronic Illness change people. You don't want it to, and try to stay the same person you were before everything surfaced, but you aren't the same person. Its just how it ends up.  

Before crashing and getting sick 9 years ago, I was an outgoing and active person. I loved people and staying busy, I didn't like staying home and wanted to the go, go, go lifestyle. I typically over did it and did too much, like a lot of this society. But that's how I liked it, it was fun. Once I got sick it slowly changed, I tried to keep up with that lifestyle, but it was so hard and it was making my health decline and negatively progress faster, which made it hard to function going at that speed. 

Now 9 years later, I feel like a completely different person, for the most part. I have learned to slow down and not to commit to so many activities. I am home a heck of a lot more than I ever was before. And I get worn out doing the smallest things. When I had 2 years of remission I was able to have a more active lifestyle with out so many consequences, but since relapsing I have had to step back again. I am still able to do a lot more than other times in my journey- I am currently working 50 hours a week, getting my kids to and from school and sporting events, etc. Just doing that all basically sucks any energy I have out of me. Which means not much left to do anything fun, or even keep the house clean. Its embarrassing, but there isn't much I can do about it. 

An example was last night- This week has been really hard, its even my off week, AKA drug break, but its been extra hard for some reason. Last night (3rd night in a row), I had to get my daughter to softball. I can not for the life of me get that poor girl there on time. Between getting off work, making dinner, feeding the kids and driving there, its a lost cause. I need to try and prep better but that takes energy, and I don't have it. Anyways, we got to the field (late of course) my daughter ran over to be with her team and my other daughter and I went to find a place to sit to watch. It was a really hot day and we had to sit in the direct sun. It didn't take long for me to feel really sick, light headed, sweat like crazy, and I was worried I would pass out. I was feeling really faint. Just sitting there in the sun and heat was too much. I wasn't doing anything or using any energy, just sitting there with my daughter. It's just kind of ridiculous to me that I can't even sit and watch a softball game with out ill effect. Of course the heat was playing a huge role in it, but it is still really frustrating. I was praying I was going to stay upright and I wouldn't pass out, freaking my kids out and causing a scene. Another example is as I write this blog post, I keep taking breaks because my eyes keep going blurry and doing strange things so I can't really see what I am typing. Something that has been happening a lot in the past couple weeks. Yesterday I couldn't get my right eye to focus all day. 

Just a lot of little things (although I am told often, they aren't little things) that have added up to big things over the years. I feel like crap, I look like crap, am basically a walking zombie that just wants to sleep all day long. 

Which brings me to my next point. Going out and being active when you are invited to things causes mixed emotions. I really, really want to be invited to things. I don't want people to stop inviting me because I am struggling, I do really want to be involved still. But, sometimes I have to cancel or back out at the last minute because I am feeling terrible. I don't want to and hate having to, but sometimes I just can't push myself hard enough, especially after long work hours. Or sometimes its a battle with in my own head. I hate who I have become. I was recently invited to a graduation party for a family I haven't seen in 8 years. I really want to go and see them, its been too long and I think of them often. But I am also battling the thought of going because I am not the same person they remember. I don't feel well a lot, I don't look healthy and people see that and even tell me that sometimes, and its really embarrassing to see people when I have changed so much. I am not me anymore in a lot of ways and I don't like presenting that to people that haven't seen those changes. It can be awkward. 

I don't want the disease to win, it shouldn't completely take who I am and who I want to be. I typically push through even when its a really hard day and I feel terrible, because I don't want it to completely change me. It is a battle for sure, but we can't let the disease beat us. Always wear your invisible crown friends. Some days we need it more than others. 

Mold

I get tired of negative updates, but I am so disappointed in our rental townhouse lately. I feel like there has been nothing but problems with this place since we have been here. For the most part they have been good about coming and fixing things when they need fixing. But it does really seem like it has been one thing after another, guess that's what happens with an old house that hasn't been updated in a long time. There are many things we like about the community- there are tons of kids for our children to play with, nice trails, swimming pool, lake and lake access, tennis courts, basketball courts, nice parks. But the actual home, its been disappointing. 

The really big one was when our shower pipes kept shaking/vibrating and was so crazy loud. We would turn it off really fast because it sounded like it was going to explode, that made showering interesting for sure. I kept contacting the rental company to come take a look, over and over again. Nothing, no one came. Three months worth of trying to get them to come look at it. And then one day it burst, yup, the pipe burst. Which in turn meant our living room ceiling started flooding and in the end came crashing down. Did I mention I was pregnant with our second child at the time and due any day. Awesome timing, so they came to fix it, and before they finished I had our baby. Thankfully they rushed to get it done before we came home from the hospital. But, it all could have been avoided if they actually were diligent with response time and getting things fixed, or actually coming and taking a look at it before it becomes a massive problem. Funny how fast the owner of the company that you didn't know existed, contacts you when you write a not so nice review/rating on google about the rental company. I hate being mean and having to get to that point, but I will if it effect my family and our health. So now I worry if they actually fixed it properly or if there could be mold growing under the surface. Which brings me to my next point-

I recently discovered mold in our bathroom. As if we don't have enough health problems in this family, hey, lets add in more mold exposure, that will be fun! Who ever installed the bathroom floor did a piss poor job and it shows. The edges aren't flush with the walls and they never would stay down. I had maintenance come caulk around the edges but it still would pop up. I finally just peeled it back to see what was going on, and there it was, mold, all on the underside of the vinyl floor. This was a horrible idea on my part because I exposed myself even more to the mold, but I tore it all up and threw it away. I went into pure panic mode and wanted it OUT of my house ASAP. There was a floor under it and after taking the floor up I could see the toilet had been leaking and it was clearly poorly installed. Who knows how long this has been going on, insert more panic. Maintenance came out, scolded me and told me he didn't see any more mold. I wasn't convinced but we had to wait for the owner of the place to respond before they could move forward with tearing everything up and re-doing it all, including installing a new toilet properly. That was probably a week ago, still waiting. 

Since then I have noticed that every time we shower, there is a black like dirt material that appears on the floor. At first I thought it was my messy 9yr old. Lord knows that girl practically rolls around in the dirt. But nothing was adding up. I would just wipe it up with a towel and throw it in the laundry. Tonight I had enough and investigated again. Yup, more mold. Can I tear someone apart now? Really? When I was looking around, I was pushing on the wall and baseboards. One section was damp and actually peeled off, that's where I found the mold, behind the drywall. Ugh, this is so dangerous and unhealthy. Not only for my own health, which is already struggling, but for my babies. My children do not need more health problems and this makes me so angry. So, once again, I am taking photo's for proof, emailing the management company, sending photo's to them, and demanding to know what they plan to do about this. Seriously, I don't even know what to do anymore. I can't have my health go to shit even more than it already is and my children cannot get sick from a house that should have been taken care of by these "professionals." I am at a loss and just really disappointed and upset. We cannot have these set backs. I guess if I have to, I will get higher up people involved and call the city etc, just real tired of having to fight extra hard for health. We will see what happens, in the meantime I guess I won't be taking detox baths since we only have one bathroom. 

Weak

I have been wanting to update but haven't made the time. Today is short and to the point. Today is one of the worst herxing days so far. I am so exhausted I can't stand it, major muscle weakness and fatigue, and just don't feel well. Overall feel like I got hit by a bus. That's all for now, I will update when feeling better. 

Two Weeks In

I am two weeks into round two of treatments and the exhausted has hit. I was doing pretty good over all, until the last day or so. Now I'm super tired and sore. Not letting it stop me though. Last night and tonight my oldest had softball practice. So, we ate dinner fast, loaded up and off I went with the two kids and my PM infusion items. I try to sneak off to the side someplace to hook up my IV, it's kind of awkward otherwise. Once I'm hooked up I just put the IV bullet into my hoodie pocket and play with my little one while we watch practice. It's completely exhausting working, parenting and fighting a tough illness. But it has to be done, so I just power through and hope for the best.

 I do get a lot of strange looks and people staring at the IV line That's clearly hooked up to me, when I'm out and about. So far no one has asked me about it. I was at target the other day and the check out lady noticed, she then told me I should probably lift the bags with my other arm because they are very heavy. She wasn't kidding, those bad boys were loaded! I thought it was kind of her to let me know and try to help me out some, but also respect my privacy and not ask a million questions. I wouldn't mind if she did though, I just make those conversations into an educational talk to try and spread the word and hope people protect themselves better. Speaking of exhaustion, I can barely keep my eyes open, so excuse me while I go crash on my pillow! 

Loosing A Friend To Lyme Disease

It is with tears running down my face that I write tonight's post. I learned today that I lost a Lyme friend of mine to Lyme Disease, Co-Infections, and Early Onset Alzheimer Disease, caused by the Lyme. She was such a brave, loving, giving, caring and courageous person. Many of us knew that she wasn't doing well, and that she would enter heaven sooner than later, but we didn't think it would be this soon. She has been suffering for a long time, like many of us, but it still seems too soon. I feel selfish writing that, because I know she is in a better place, free of pain and doing all her artwork she loves so dearly. But its just not fair, someone so young and so full of life shouldn't have to leave this earth so soon. I am so sad the world lost her. 

She was an amazing person, she didn't let her health define who she was. She made sure to reach out to people and ask how they were doing and still tried to do things that made her happy. She was a great artist and would post pictures often on facebook of her creations. Such talent, it was amazing! We would talk about art, crafts, family, our illness and just life. She made such a huge difference in so many lives! Its pretty powerful to see a person come from a broken childhood and struggle, but not let that define who they become in life. She used it to her advantage and created a great life and helped many along the way with the same past struggles. 

It really is so amazing to see everyone writing on facebook about how she had changed so many lives for the better. It is a broad range from people that have known her for a very long time, to a short time, and some that never met her in person. Each person has been moved by her, it didn't matter if they never met in person, she was just such a powerful, positive being and made such a difference here on earth. I could write a lot more but I want to protect her identity so I won't go into much more detail. She will be missed by me and so many others. I am glad she was a friend and that I had the privilege of knowing her. The artwork above are some of her creations. Rest in peace warrior my friend. Until we meet again. 

Two Week Break

I am finally getting on here for an update! I completed my first round of treatment, which was 6 weeks, and then went on my 2 week break. This kind of treatment is called "pulsing", I will write another post explaining what that is, and why some docs treat this way. 

I was really looking forward to the break, I was herxing like crazy and so exhausted. I was really hoping the break would give me some relief and a nice break before the next round. Week 1 was amazing!!! I felt great, had energy, felt like I could keep up with life, was on a mission to get a bunch of things done around the house etc. I went a little crazy with my To Do list, it was just such a relief to feel so great after a rough 6 weeks. Week 2, not so much. I think part of it was me over doing it during week 1, and then also my body was crashing and it was clear I needed to go back on treatment. I still felt better then when I was on treatment, but not great. A lot of symptoms came back and tons of body pain. I was in a pretty ridiculous amount of pain yesterday. I over did it the day before having a fun family day fishing with the kids. I paid for it, that's for sure. But it was still nice to get out and be active and have fun. 

Today I started back on treatments again. I did my morning infusion today and I have already felt it kick in. Which is both good and bad. Good, because its killing the bacteria and doing its job. Bad, because I feel like poo. I really need to be better about detoxing this month. The reason many people on treatment feel sick is because there is SO much die off happening so fast that the dead bacteria floating around in your body becomes toxic. A persons body cant rid it fast enough. Hence amping up detoxing 100%. So there ya go, I will be detoxing tonight....I promise!! 

Treatment-Week 4-Herxing

Week 4 has been much harder than I thought it would be. I haven't changed anything or added treatments, but the herxing is insane. I am proud of myself for being able to get things done I need to as far as parenting and working but it sure isn't easy. I have tried to add in things to make life easier. I started ordering on-line groceries, using Amazon to also order things I need and using help from others when it is needed. It takes a village when someone isn't sick, it sure takes a village when you are sick. I really do hate asking for help and needing help, but sometimes I have to give in and just ask, accept it, and move on. It is my life, I have to just do what I can. Thankfully I have fantastic neighbors that have helped me out some. 

The herxing has been kind of strange and I have some new symptoms I have never had before, and then some I have had many times. One new one is I keep getting a sensation of bugs crawling around in my left eye. I don't know what that is about but its disgusting and I would be perfectly fine if that one left and never came back. It doesn't matter what I do to try and stop it, it just kind of comes and goes on its own. Another new one is I am getting "hot spots" randomly around my body. I know some of it can be histamine related but I am sure some of it has to do with herxing and also neuropathy. It tends to be in the evening, I will get one hot ear, one hot foot, one spot on one of my legs gets hot, one hot finger. Its very strange. Some of the other herxing symptoms I am getting: hot flashes, major fatigue, night sweats, nausea, head and neck ache, visual stuff like blurry vision that comes and goes along with floaters, brain fog, muscle fatigue, muscle pain, body pain, foot pain, dizziness, itching, ear ringing. Some of these I have all of the time but some are from herxing and all the die off in my body. 

I have been trying to work on detoxing since the meds are killing off the spirochetes at a rapid pace. I am sure my body cant keep up, hence the ridiculous herxing. I am trying to remember to put burbur drops in my water daily, I took a detox bath today (which I need to do every couple of days), trying to drink tons of water. I need to get back in to many other detoxing methods too to help things along. Another easy one to do is Dry Brushing, I always forget to do that before jumping in the shower, but it really does help a ton. It is hard to fit in detoxing when you are so drained but its an important component to healing. 

Yesterday and today have been rough. Today I have laid low and have been in bed most of the day. If I have my eyes open too long, they start to really burn. So I take breaks after being on the computer or watching tv to give them a rest. I wish I could just sleep all day long, but in order to get my supplements in, my IVs, and food so the meds dont make me extra sick, I cant go too long in between with out having to do all of those things. They all need to be spaced out through out the day and some cant be taken to close in time to another one. Then of course the kids want to see me etc. I am doing the best I can to rest up on the weekend so I can function during the week so I can continue working and continue to be available for my kids. 

If anyone has any specific questions about Lyme Disease, Co-Infections or anything related, please let me know. I would love to do blog posts about those to help educate people. That has always been my goal once I became sick. I want people to be aware so they can protect themselves and their loved ones! And to better understand chronic illness.