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. 

Hurtful Comments

I have learned over the years that uneducated people will make hurtful comments. The majority of the time they don't mean it, they just don't realize what they are saying is completely ridiculous and just how hurtful they can be to a person. For the most part I have learned to let those comments roll off my back. Or, I choose to take those opportunities to educate the person on the subject of lyme, or chronic illness. But sometimes it surprises me, or hits me harder than I would like. Especially when my children are involved. 

I was at a family function recently and someone there was asking about my health, my picc line, my treatment plan, etc. Then the person asked why the docs thought I had relapsed and needed treatment again, as in what caused it. I explained that there are many factors when it comes to lyme and everything else I have going on, and there are a million reasons a person can relapse. I said I am guessing my last pregnancy did a number on my body and it may have caused a relapse. This person then turned to my 2yr old and said "You did that?" Right to her. NO! SHE did not do this to me. If you are looking for someone to blame, then blame me. Myself and my husband are the ones that decided to get pregnant and add to the family. I am the one that knew the risks going into it. I am the one that chose, she did not. Do not ever, ever, for one second put this on my children, ever! This is not their battle and they are not the ones that caused me to be sick. I do not for one second want them ever thinking they are to blame for any of this. How horrible of a feeling for a child to think they are to be blamed for this. 

Having said all that, I feel we went into the process of pregnancy very educated. We had talked to many professionals, and learned everything we could. We waited until I hit remission and was healthy enough to handle a pregnancy again. I wanted another child for years, and years. It was really hard to wait, but we knew that was best. Once remission hit I went on a combo of pregnancy safe drugs to prevent passing lyme to the baby, for the entire length of pregnancy and breast feeding. I did everything I was suppose to, to keep my baby protected and to keep my own health in check. Sometimes you can do everything right and still have consequences when it comes to chronic health problems. But guess what, she was born healthy. She is a sassy, spunky, loving, fun 2yr old just like her big sis! She was worth the years of suffering to get better. The tough pregnancy was worth it, both of my children were worth it. My children will always be worth everything I go through. They are the reason I get out of bed every morning and the reason I keep fighting to get my health back. I will never stop fighting for them. They are my everything and deserve only the best life can give them 

Feeling Defeated

I have been feeling defeated lately. When I first started infusing I felt fine during the day, but nights were really hard. I was on a HIGH dose for my evening infusion. I called my LLMD to ask for zofran and then my yucky symptoms just stopped. It was very strange. Doc still wanted to cut my dose in half since it was a very large amount and also got me some anti nausea meds. I haven't had to use any yet but I am glad I have them on hand. 

It seems as though the 3rd week of treatment has hit me hard and the fun and random lyme roller coaster has kicked in. I feel fine one hour and the next I am completely exhausted and herxing, and then again the next hour I am fine again. Lyme is so weird! Typically by night time and weekends I am completely fried. So exhausted its ridiculous. My daycare and my own children keep me going during the day and into the evening, but man I am pooped! Then you add in some insomnia and its a party over here!

 Tonight I pushed myself way too hard to get some shopping done. I wanted to get all Easter shopping out of the way but that also meant too many stores in one night. I am exhausted, my whole entire body is humming and vibrating, I am getting shooting random pain in various areas, and feel like I have fatigues muscles. 

Since my hubby works strange hours it has been hard for me to get all the errands taken care of. I am definitely going to do as much shopping as possible from the computer and having it delivered. Thankfully between amazon and a grocery delivery service here I think I can get most things I need. Also need to stop pushing myself so hard to try and keep on top of so many things. Can't be super women, need to give that cape a rest sometimes ;-) On a side note, I am thankful my 2yr old doesn't seem to really care much about me infusing and what its all about. 

Picc Line Is In!

Picc line is in! I had it inserted on March 1st, and thankfully the same nurse I had last time was who I got this time. She's really great-so kind, calm and caring. Last time I had my picc line placed they had a hard time getting it to go to the proper place. Thankfully, this time around they have some new technology and it went much, much smoother. It only took 1 try vs 4 last time. Phew, I was very thankful for that. I had myself worked up over it since it took so many try's last time around. I wasn't looking forward to that part of it. But this time really was a breeze, so easy and smooth and hardly any pain at all. 

Before they started getting set up to place the picc line, they hooked my up to a normal IV in my hand to make sure I wasn't allergic to a particular antibiotic. Once they got that running the picc line process started. Since I infused at the clinic, that is officially the first day starting back on IV therapy. I am now about 3 weeks in and have had both good days and bad days mixed in there. Here are some pictures of the picc line process. 

A New Health Chapter

About a week ago I traveled to see a new lyme doc.  I have heard for a long time that he is amazing and the top lyme doc in my area, so got on his waiting list. Took 9 months to get in but his current wait list is 14 months so  I was lucky to get in within a 9 month wait time.  The doc was great, he really took the time  to listen to my history, questions, comments and concerns. He did a great job explaining things and his staff was fantastic. The nurse also did a great job explaining all the strange tests she was giving me. They seem pretty up to date with the testing etc they were doing and I found it pretty interesting. Lets see if I can remember everything--

When I got there the nurse gave me some tests I have never heard of or had before. The Bioelectrical Impendence Analysis and Phase Angle and Cardio Wave Analyzer. 

Phase Angle is a calculation of 2 electrical properties, reactance and resistance, on a cellular level. Phase angle is an indicator of membrane integrity and water distribution in and around the cells in our body.  It tells us how well our cells are performing. Surprisingly, I did well in this test and my cells are working well in my body currently. 

For the Bioelectrical Impendence test I was hooked up to electrodes to measure body composition, fluids distribution, body fat, body mass, etc . It measures the resistance of the body tissue.He didn't end up going over these results with me so I am not sure where I stand with this one and no clue what the results mean on the print off. I may have to do some research on this one or just ask next time I am in. It basically just gives him a measure on how well my body is handling my current health state and will help give a comparison when I start treatments etc. 

Cardio Wave Analyzer. This tests Digital pulse wave analysis, Heart rate variability and The autonomic nervous system, Sympathetic nervous system Parasympathetic nervous system and Accelerated vascular. 

When doc came in we went over my whole history, I tried to remember everything since all my records didn't6+ come in time for some reason. Hope I hit all the important points, its hard to remember 9 years worth of medical problems. He asked a lot of questions and I thought it seemed really up to date in the field and very knowledgeable. Its pretty clear that both lyme and babesia are back full force. He checked my hands and feet with this vibration tool. My hands did really well and I have good sensation and no loss of feeling but my feet are showing some damage, I couldn't feel the vibration for as long or as strong in the feet vs hands. Right foot seems to have more damage than the left. He also said he saw arthritis in my front collar bone by just visually looking at it, one side sticks out more than the other. Hands have Rheumatoid Arthritis, he also said my hands have Swan Neck Deformity, which I have never heard of before. I looked it up and the definition--is a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it-- is exactly how my hands look. I hope my hands don't get worse because those photos on the web are disturbing!! Never google haha! He also did a brain assessment screener test-9 and above is severe...I tested at a 23. Which basically means my body is constantly in the Flight or Fight stage and why I have trouble with anxiety and lines up with Babesia always raking havoc on the brain and function of the brain. Aka-my brain and autonomic nervous system are a hot mess and all over the place.  The plan moving forward--

They took 6 vials of blood to run an immune panel, and new patient panel to monitor health markers.

I will be re-tested via I-genex testing in CA. They are the gold standard in lyme testing. Their comprehensive lyme panel looks for lyme disease from several points of view. This test will include an immunofluoresence assay, western blot testing and PCR testing. An immunofluoressence assay is looking for IgG, IgM, and IgA to lyme disease. The western blot looks for antibodies of IgM or IgG to specific parts of the lyme bug, and PCR searches for DNA of the lyme bug. While no test is perfect this is an excellent first step in the laboratory diagnoses of lyme disease. If we can prove lyme and get a CDC positive it really helps lyme cases and getting insurance to cover medications, testing, and the general medical world to take you serious. It also really helps your case if you were to apply for disability. Any good lyme doc out there will not just go off of labs, it also has to be a clinical diagnoses. Testing is just not accurate enough bc those darn bugs and spirochetes can dig so deep in your body. 

I have to come back two separate times for more testing. These tests are called Evoke. Evoke EEG and CNS vital signs. They can not be done on the same day so have to go back twice for this. The evoke test is a neurocognitive test but also measures a wide variety of my underlying neuro-endocrine physiology. It is a sensitive measure of  my autonomic nervous system balance. It is the autonomic system that is the interface between your brain and your endocrine and immune systems. It also measures and maps your brain waves, which help them understand how my brain is operating and how it is responding to stress. It also gives indication of GI health. mitochondrial health and certain chronic infections.

The treatment plan- Since its clear things are back full force, I had done many years of oral antibiotics, bicillin injections and responded the best to IV treatments via picc line, he is ordering another picc line placement. I have mixed feelings but I know my body will respond best to this sort of treatment. My only worry is I will herx a lot. Last time I had my picc line placed, I was warned by many to brace myself bc I am in for a hell of a ride with such powerful drugs being pumped into me twice a day. But, I felt amazing. This time around my body isn't going from years of orals and then straight to a picc line....so the herxing could get rough. But, I am hoping it makes me feel good again vs sick. As long as we can get insurance to covered it that's the plan and he wants to do this soon. The clinic is contacting a couple infusion companies and they will contact me to get rolling. He wont say how long the picc line will be placed for because it just depends on how my body does with the treatments but its a minimum of 6 months. In addition to IV treatments I will also be doing a bunch of supplements again.  I also will start a very high dose of stevia, a special kind. This particular dosing and kind is known for killing off lyme. Also on the list is to start HBOT--Hyperbaric oxygen treatments. NOT excited for this one, I am claustrophobic and being locked into a small chamber and being pumped with oxygen doesnt sound fun to me one bit. It has to be a special kind and luckily there is one not too far from my house. HBOT is a way to increase the amount of oxygen in your tissues. Studies have shown that HBOT can imprive all of the key physiologic areas of the functional medicine matrix. This included the GI barrier function and altering the gut microbiom. HBOT can kill certain pathogens, decrease inflammation, and improve the activity of white blood cells. It can improve mitochondrial function thus improving the conversion of fluid in the energy. Bio transformation/detoxification can be enhanced by HBOT. It has also been shown to increase the sensitivity to messenger molecules such as nitric oxide and certain growth factors. It has also been shown to release your own stem cells. I have  many friends who have done HBOT. 

Since originally writing this I have an update on the picc placement. I will thankfully be using the same infusion company as last time and even my same nurse for my home care! They are such a great company to work with. I will be getting the picc line placed next Tuesday, 3/1/16. I am hoping they get it on the first try and it's not as tricky as last time. Once it's in I can't feel it and it is pretty easy to use. Here we go, hope its not a rough ride!!