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. 

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. 

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. 

Tick Prevention and Proper Tick Removal

I have a friend that has Lyme Disease with a great blog and I thought this post was a great reminder. It is so important to know how to properly remove a tick! Check out her blog post HERE

Conquering Depression

7 Steps For Conquering Depression

 

 

• Unplug From The Noise

           Take a sabbatical from the news, facebook, Internet discussions, and any social interaction with grumpy naysayers, Debbie downers, and drama queens.

 

• Daily Exuberant Motion

       Turn on some bouncy music and move! Dance exercise, swim, walk, play tag, chase the dog.    Break a sweat and feel your heartbeat. Let the blues roll down the drain when you rinse off.

 

• Daily Mindful Stillness

          Spend some time paying attention to you. Sit still, breathe, and notice your body, thoughts, emotions. Work towards 20 minutes of compassionate awareness and acceptance.

 

• Cultivate Joyous Virtues

           What if happiness isn't something you wait for, but a habit you can practice? Compassion, gratitude, peace, passion, innocence, curiosity, play, enthusiasm, and generosity.

 

• Try A Pride Costume

           Scrub yourself up nice, and get dressed like you're proud to be you. Go out and do some work in a coffee shop or library. Walk tall, smile, maybe even flirt a bit. Shine!

 

• Eat Like Hunter-Gatherer

          Yes: Plants, animals, water. No: Grains, sugars, chemicals. Caffeine is great rising, but remember to ease off to encourage healthy sleep.

 

• Mitochondrial Support

          Supplement with CoQ-10, L-Carnitine, B-Vitamins, Folic Acid, and Antioxidants. Spend time in the sun for Vitamin D.

 

I saw this on Pinterest and thought it was a good list. It linked to Get Inspired Get Fit

 

 

 

 

 



Lyme Disease is the most rapidly spreading disease, faster than HIV/Aids TB and Cancer

I thought this was a great talk, check it out!

Remission

I AM IN REMISSION, yup I said it, remission!!!! I honestly never thought I would get to this place in my life. What a sweet word remission is, music to my ears and all of those fighting the Lyme battle. I want to throw a remission party, yell it from the rooftop, dance around, sing, party, do everything I couldn't do for so very long. I am very happy, but also leery. I know lyme can come back at any time and I haven't been in the clear too long. December 19th I had my PICC Line pulled out and have been in remission since then. I am currently on maintenance drugs so I am not drug free, but many good Lyme docs out there know that this is the best way to do it. You should never just stop treatment all at once. Your body has been sick for so long and on meds for so long that it would really throw it for a loop cutting things out cold turkey. So for now, I am on a couple to make sure things stay at bay for a bit. I take it everyday but everyone is different. I have a friend that is doing great and he only has to take meds one weekend a month to make sure he stays healthy. That isn't bad at all!

I have been gradually been getting better for a while but always hit road blocks and could never get over the hump. The key for me was the IV treatment via the picc line. Everyone on my medical team was amazed at how fast I was getting better on it. I hardly herxed compared to other treatments I have tried and was improving at a pretty fast pace. I only had the picc line in for a total of 4 months and it didn't take me long to feel well and could tell it was working! It is amazing to me that someone can improve so quickly when you find the correct combo for their body! Makes me wonder what would have happened if I would have done this a long time ago. 

It is fascinating to me that such a tiny tube in your vein can provide such important medications to get you better. A tube that is always in your arm, that goes all the way to your heart and stays there. Just chilling in your vein doing its job. A tube that is kind of complicated to get put in and so easy to take out. To take it out all my nurse had to do was pull it out, that's it! I couldn't even feel it and wasn't grossed out like I thought I would be. Such a tiny tube with such a big job! Boy am I thankful for that little tube! I had to keep the spot covered for 3 days so air couldn't get into my vein and then I was safe to let air on the spot and shower like normal. I kept it covered for an extra day since I was paranoid air would get into my lungs if it was exposed to air too soon. It has been very nice to shower with out having to cover part of my arm! Now you can hardly tell I had anything in my arm. There is just a small red scar that I am sure will fad more over time. 

I am living proof that long term antibiotics DO help and that many in the lyme community need that to get better. There is no easy or fast fix when it comes to such a complicated disease. It's a long, hard, hard battle. I wish all of us could get to the point of remission! Keep fighting the good fight and never give up!!!

Picc Line

I have't updated in a while and many things have changed! I was hitting road blocks with the oral meds so my lyme doctor and I decided it was best for me to get a picc line put in and get IV treatments. I was really nervous to get the line put in, I mean there was going to be a tube inside my arm to my heart that stayed there!! Ew! I knew I would be fine once it was in but the process of getting it in grossed me out. My hubby came with and I had two great nurses. There was a little trouble getting it in the right location but once it was in the correct spot I was good to go! Its been really great! I forget its there most of the time and once it healed I could do normal things with my arm again. My nurse said I could even lift weights if I wanted to. Note to self-get my butt in gear and start working out again ;-) I have had one blood clot in my line but it was really no big deal. My nurse came over and put meds in my line to take care of the clot and the line worked again!

I started out on one drug that was one IV a day, then I got bumped up to two IV's a day. Currently I am on two different IV drugs. One is a cyst buster that I do three days a week, twice a day. The other is the drug I started with that is four days a week, twice a day. I was warned by many that IV therapy is really rough and I will be down and out for a while, especially the cyst busters. Of course I have had bad days but its been a blessing to have this treatment. I have come a long ways in a very short period of time and I am not herxing like crazy like many people thought I would. I love this treatment, I only wish I would have done it earlier! Lets hope I keep getting better and will enter the world of remission soon! How awesome would that be! I never thought it was possible after 5 1/2 years of fighting for my health!! Check out facebook for more pictures of the picc line process.

What I Wish I Knew Ten Years Ago

•What a deer tick looks like and how very small they are


•When a deer tick is engorged with your blood it can look as big as a wood tick


•How to properly take a tick out. Do NOT squeeze the body, use a tweezers and get the head


•You don’t have to be in the woods to get it, you can be in your own back yard or right in the city


•Not everyone gets the bulls eye rash


•If caught early and you treat right away with antibiotics it can potentially be enough to get rid of it


•If caught later, you could have years and years of treatment and the damage may be irreversible


•Doing a full body check every single night is a key factor to find any ticks either before they attach or get them out as soon as possible


•Showering after being outside lowers your risk to get any unattached ticks off of you


•Putting your clothes in the dryer after being outside can kill ticks attached to your clothing and lower your risk


•Pets can bring ticks into your house and they can drop from them onto your bed, couch etc and then attach to you


•Kids are at the highest risk


•Keeping your lawn very short and cleaning up leaves right away lowers your risk


•The Elisa test they do at a normal clinic is a horribly inaccurate test and normal MD’s are not educated like they should be about Lyme Disease and co-infections


•You need to see a Lyme Literate Doctor to get accurate information


•You should be clinically diagnosed in addition to the advanced testing, there is no test out there for lyme disease that is accurate enough to 100% go off of


•If after going to a million doctors and getting nowhere, and getting diagnosed with random things, you are still not getting better you need to see a lyme literate doctor to at least rule out lyme disease


•Lyme Disease isn’t called the great imitator for nothing. It can imitate MANY other diseases out there 


•Do your homework and fight for your own health. Only you know how you feel