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!! 

Do You Feel Alone In Your Journey?

Do you ever just feel alone? You could have all the people in your corner, and you're still lonely. I think after a person has been chronically sick for such a long time, people just don't know how to help you anymore. Friends and family and anyone else supporting you don't understand. People will never fully understand what you are going through, unless they are going through the same thing.

I've been sick for so damn long, I'm drained, physically and mentally. I hit remission for two years, and that was so nice. A really nice break to feel so good for that period of time. It gave us a chance to have our second daughter, she was so worth waiting for, and all the pain and suffering I went though to get better. My children keep me going, I push through the days and nights that I'd rather not. It would be easy to surrender and just lay in bed and not care about what's happening around me. But that wouldn't be fair to them, and I would miss so many fantastic memories with them and my husband. But man, some days, some days are just so hard. My health is declining and I feel like it's declining more rapidly these days. I'm still able to work my job and function as a parent, but it's not easy, that's for sure. On the weekends, I'm so exhausted I just want to lounge around and veg to catch a bit of a break. Thankfully my husband is awesome and let's me sleep in, and if I nap, I'm out cold for a minimum of 4 hours. My body just needs it! 

I do feel like people have given up on me, I mean in the world of the chronically ill, why would they stick around? What are they suppose to say or do for you after all that time? It's the same story, ya know?! My answer is- just be there. Keep communicating, just talk about your day, ask about ours, anything really. Just be there for them, because they need it. The longer the chronic health problems go on the more support a person needs. I think it's hard for the outside world to see, we get good at covering the pain and anything else that's going on, because we have to. It's our world, and the pain that was an 8 on the pain scale five years ago, is probably now a 4 because we adjust. If you're reading this and you have someone in your life that's chronically ill, keep checking in with them. If you're reading this and you are the chronically ill person, know that I completely get it and we can lean on each other to get through. It's hard, really hard, but the world still has a lot of beauty in it, and beautiful people on it. We just have to look a little harder some days

Relapse and New Diagnoses

I am very long over due for an update on here. I gave birth to our second daughter in February of 2014. It was a rough pregnancy to say the least but I made it through and gave birth to a perfectly healthy, sweet, spunky little girl! I was on a two antibiotic combo while pregnant to help prevent passing along lyme disease to her. Even though I was in remission, it is still recommended you be on the two drug combo to protect the baby. We tested the cord blood and that came back negative. I am keeping a close eye on her but other than two food allergies, she is a healthy girl and we couldn't be happier with our two girls. They are the loves of our life and we couldn't ask for better children! Parenthood is an amazing journey, right?! We are so blessed! 

Onto my health. I am not doing so well, recently I've been diagnosed with Mast Cell Activation Disorder or Syndrome. Also known as MCAD or MCAS. Over the past year I have been having a lot of trouble with food allergies and sensitivities. I have has a few anaphylactic reactions, Iv'e had to use my epi pen twice and should have used it three times. Have been to the ER many times and just trying to figure out what the heck is going on with me. I was lucky enough to see a Doc in the Mast Cell field that is the top dog, many people travel really long distances to see him and lucky for me I didn't have to go far. I had to go through testing twice because its VERY sensitive and the first batch was mishandled so round two was the winner (or looser? lol). It proved I do in deed have Mast Cell and we can move forward with treatment. Its tricky and very confusing. There's only so much researching I can do before I get completely overwhelmed and have to take a break. So I still have a ton to learn. According to the specialist and the Mast Cell community, it can take years to find the correct drug combo that is the winner for me. Oh joy, sound familiar? It's all so confusing. This particular Mast Cell doc doesn't believe in chronic lyme and thinks the crappy testing out there is accurate (insert eye roll), so it gets really confusing what is Mast Cell and what is my lyme and co-infections. I really do not understand at all why these medical professionals don't believe you can have both. Of course you can, ticks and lyme are everywhere, its an epidemic so of course you can have many different health things going on at once in one person. And I am sure they feed off of each other and break the body down even more. I have so-much-learning-to-do. Its exhausting! I was also recently tested for the MTHFR gene and it looks like I have that too. Not surprising but still annoying to add more to the plate. Still learning what that's all about too and need to see the genetic team for more specific testing. Apparently I can be at risk for blood clots now? As far as the lyme, I think I relapsed a few months ago. I didn't want to admit it and also didn't want to pay an arm and a leg to see my medical team and for treatment. There is no denying it now though, I am getting worse and need to do something about it. Just in the last week or two the bone pain has gotten so much worse. Joint pain has been mostly feet consistently and lower back but now its traveling. Knees have been so dang painful recently along with feet. I am sure both babesia and bartonella are back from my current symptoms I am showing along with the lyme. I feel like an old lady. It especially kicks in full force at night after I have been sitting for a bit, its hard to get up and oh so painful. The joys, right?! So, I decided to make an appointment with my naturalist in a couple weeks and go from there. May be adding in my LLMD in NY too. 

My older daughter who is 8 is having a lot of health problems lately too, so we are trying to figure out what is going on and how to help her. There is a local peds Mast Cell doc that she will see for testing, most likely test her for lyme again and have some specific genetic testing done for her too. Poor thing is too young to deal with so much. She already has celiac disease and a metabolic disorder called MCADD. Lets hope we can get all of under control for her specifically. 

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