Sunday, March 26, 2017

The past several months have been an ongoing battle for me and my family. The external stresses and intentional hurt being inflicted on us has been taking its toll on a variety of levels. This May I will have been on chemotherapy for a year to help treat my lupus. At times I feel as though it is helping and at times I feel that the side effects are worse than the disease itself. I have ups and down in my illnesses, mainly driven by the amount of stress occurring in my life. It seems that every time I begin to get a step ahead and feel better, someone or something causes undue stress which leads me into a flare and the cycle starts all over again. 

This week has been extremely tasking on me both physically and emotionally. There have been a few wonderful things that have happened, however they were followed by vindictive acts which has me at the beginning stages of a flare.

Many people ask me what lupus is and how it feels. On some levels lupus is very complicated, especially when it is coupled with Lyme disease and other disorders or diseases which is very common. With lupus your body attacks itself thinking its “bad” and therefore igniting a war inside your body. Taking the proper medications (transplant medication and chemotherapy in my case due to the severity) try to trick the body into thinking it’s good instead of bad which doesn’t always work, or if it does can be a short-term solution resulting in a long-term treatment plan, including being on chemotherapy for several years. 

As far as how lupus feels, two words come to mind immediately, pain and exhaustion. Some days I feel well enough to function normally, even when I know I should rest. I try to maintain as normal of a life as I can in public, working, running when I’m able, attending events or gatherings. However there are times during those days when I feel like I may collapse or start crying and not be able to stop due to the pain and exhaustion. These moments can come out of nowhere or slowly build over days. 

I’m extremely blessed to have an amazing family, incredible children, and a wonderful circle of friends who have been with me during the hardest times, even seeing past the verbal “I’m fine’s” and knowing reality is anything but fine. One thing I still struggle with is understanding how someone could abandon their loved ones during times of pain and illness, to the point of purposely inflicting more harm to make them more sick. Living through this has probably been one of the most difficult things I’ve endured. However sometimes blessings come in disguise. 

So through times of pain when we put on our game faces and continue on with life, trying so hard to make sure no one senses or sees the pain or hurt, those days are often the hardest. We can close a door and have our moments of weakness, but never let them see us struggle, even if it leads people to believe we’re not as sick as we truly are. Chronic illness takes its toll not only on the person, but their children, families and friends. The fear alone that they face is often more difficult for them than it is for the person fighting the battle. It’s time for understanding and awareness of lupus, Lyme disease, and so many other chronic illnesses that follow this same pattern. We are all just people trying to get by to the best of our ability without making our struggle more difficult. 

Sunday, August 7th 2016


It’s Sunday, which means for me it’s the day to take chemotherapy. Sunday has become my least favorite day over the past 13 weeks for this reason alone. It means rushing to get as much done as possible because I don’t know how I’ll feel after I take the medication. 

I had been on the oral medication until a month ago, however I was still flaring, had very swollen joints and in a lot of pain so my doctor made the decision to put me on an injectable form at the max dose. The shot has a faster and more drastic reaction, leaving me sick much sooner after taking it. I haven’t seen as much improvement as I was hoping while on this form, however my doctor said it can take up to a couple months to see the effects. 

I still have good and bad days, but Sunday through Tuesday/Wednesday seem to be the worst as far as medication reaction. I get horrible headaches almost instantly and try to keep as much fluid as possible down. I get extremely naseous, stomach pain and overall pain through my body. I also get flu like symptoms where I’m chilled then running a fever and have a very hard time sleeping. 

I’m currently attending training so I don’t have much time to rest or relax and my body is definitely feeling it. Not only are the side effects from the medication kicking my ass but my Lyme symptoms are starting up again.

There have been several days this past week where my feet and arms have gone numb, especially the first 15-20 minutes of the day. As much as I’d like to lay in bed and try to sleep through the pain, it’s not an option. So I force myself out of bed knowing with time the pain will become part of the “norm” for the day and it won’t be as overwhelming. Eventually the tears will stop. 

I try to rest and not let life stress me out, however with everything going on right now it feels damn near impossible, but I still fight every day and remember I was given this life to live because I’m strong enough to live it. Even when certain people inflict undue stress knowing how sick I get from it, and almost seem happy about it. Those are some of the hardest days. Knowing there are so many people who care and will do anything to help me and knowing there are always others who want nothing more than to break me. It’s something I’ll never understand..but it also keeps me fighting to show them I’m unbreakable. 

So to everyone who thinks someone with a chronic illness isn’t sick because we’re able to function on a regular basis, remember most of us are great actors. And while we can make ourselves presentable and get out of the house, it doesn’t mean it’s not a struggle every second of every day. 💚💜💚💜💚💜

Friday, June 10, 2016

I have been on chemo for a month now, so I had an appointment with my rheumatologist to analyze my labs and make sure my body was tolerating the medication. I explained my main side effects, nausea, vomiting, hair loss, weak nails, stomach pain, body pain and headaches. I expressed my concern that I didn’t feel the medication was doing much for my flares, to which he explained it takes between 6-8 weeks for it to fully start working in the body. So translated that means I can expect the side effects to get worse. Good times… Anywho, he increased my dose which I was expecting. He said he’s sure I will need to be on the max dose however we needed to gradually step up it up to try and limit the side effects if possible. 

I am still experiencing a lot of joint pain and rashes from my flares, swelling in my joints, primarily my hands, ankles and toes which have had me hobbling around most nights after being up on my feet for a good part of the day. My toes have never really been affected by the joint pain so this is a new one and very painful. I’ve been taking a lot of apple cider vinegar baths to try and get the toxins out of my body in hopes to alleviate some of the inflammation. I also take a very hot ACV bath on days I take the medication. My theory is to get myself feeling as bad as possible to try and sweat most of the toxins from my body so I can start feeling better sooner. Not sure if it’s helping or not but releasing the toxins is always a good practice.

I am also developing some major lymph node blockages which are causing some pain do I need to get a lymphatic to help unblock the in hopes that helps with some of the pain and inflammation as well. 

All in all the medication isn’t great but there’s always worse things I could be experiencing. I’m still hopeful it will end up helping more in the next could months. Hope is what keeps me going so can’t lose that now!  💜💜💜💜💜💜

May 28, 2016 – Week Two

It has been two weeks since I began chemotherapy treatment for Lupus. I am taking Methotrexate by pill form not IV which makes it much more convenient. I have found within a couple hours of taking the medicine I start to not feel normal, not necessarily bad just not the same. I had the same type of feeling right after I would get the “push” shot from my integrative medicine Doctor last year, prior to my full blown reaction. 

As the night goes on I begin to feel worse, pain sets in throughout my body, mainly in my joints and I become so fatigued I can hardly move. Day two always seems to be the worst for the pain and fatigue, even trying to push and force myself to get up for work has been impossible as all I want to do is sleep, but am unable to sleep well for an extended time. The third day I’ve been able to get up and to work, however it is difficult and the symptoms continue but differ some. I am still fatigued, tremendous joint pain and very nauseous. This has been going through day 4 for the most part. 

This week however I had a set back and today, I’ve been pretty much laid up in bed since this afternoon, only getting out with my dad and daughter to eat something since even that has been a chore some days. I got sick after I ate of course and the pain is continuing to worsen in my lower body, especially hips, knees, ankles and feet.  Unfortunately tomorrow is the day to take the medication again and I can feel it progressing with each week’s dose. 

The challenges I’m facing are not solely medical at this point in my life but also personal which do not help at all with my illnesses or treatment. My doctors have been keeping a very close eye on me due to the impacts of stress on lupus and Lyme and the direct effects and damage it can cause almost instantaneously. I’ve seen the progression happen within myself, even though I’ve fought my ass off not to let it impact me. Some things just happen within your body that you cannot control, another very frustrating fact of living with chronic and potentially debilitating and fatal illnesses. I’ve recently been told by someone I once loved wholeheartedly that I’m not really sick and faking my illnesses. Even knowing what I know, it still hurts to hear evil words purposely said to inflict more pain and stress. 

But again, things could always be worse. I continue to take each day as they’re handed to me and try to find the stength to rise above whatever challenge is thrown my direction. What doesn’t kill us makes us stronger right? Or so the saying goes…

February 29, 2016

Another tough day today, couldn’t sleep last night due to constant pain and muscle twitching making it difficult to stay still long enough to try and get comfortable with the pain. Another unpleasant aspect of Lyme is involuntary twitching of the muscles. Mine seems to occur more when my body is in “flare” and the Lupus and Lyme are active in my body. After I went through push therapy last year my twitching had almost completely subsided, however it has been increasing more and more with each week. 

Due to exhaustion and pain I was unable to work today. I’ve been pretty lightheaded since yesterday and get dizzy if I’m standing or sitting upright for too long. I’ve also been alternating between freezing and burning up/sweating. 

My sweet kitty Dax knew I wasn’t feeling well (she always does) and has stayed by my side all day. She’s been giving me kisses often which at least make me smile. 😊

I’m hoping tomorrow will be better. I know I’m in need of another IV to help battle the war inside my body and hopefully I can manage to get one sometime within the next week or two. 


Saturday, February 27,2016

These last 6 weeks haven’t been the best, I’ve been gradually feeling worse each day, swelling in my joints, pain pretty much everywhere, headaches and fatigue. I have been doing home care and glyoxal butt shots at least 3 times a week to keep me going which have helped but aren’t fixing the issues which are happening  under the surface and activating the Lyme and Lupus symptoms.

With the fatigue getting significantly worse with each day, I’ve decided to start getting treatments 1-2 times a week, depending on finances. The only bad thing about the treatments is although they are my only viable option for successful treatment, it is not covered by insurance so all the treatments are out of pocket and not cheap. The doctor and my plan as of now is to get 1-2 IVs a week, mostly autoheme and Vitamin C with a B12 injection, glyoxal (butt shots), colonics and lymphatic and see if that gets me where I need to be. 

I have also continued drinking Kombucha and taking probiotics to help keep my gut healthy and that is helping some. Starting this week I am also off of prednisone entirely which is the one goal I’ve been praying to obtain for 18 months. This is also causing my thyroid to go out of whack as well as contributing to some of the pain and swelling. That medicine is the devil and the pain of being off of it is better than the side effects of being on it so I will deal with the discomfort any way I can. 

Yesterday I received an autoheme/blood ozone IV which are extremely exhausting as 200 cc’s of blood are taken from my body then reintroduced once ozone and oxygen are added. Another IV is then administered containing hydrogen peroxide. 

I was very tired last night and when we got home from Reno I had terrible pain in my legs  and I was unable to walk into the house without them giving way. I’m feeling better today, still very weak and tired. 

This has always been and will continue to be a very long and painful process. But I remind myself each time that it’s worth it and with as bad as things get or seem, they always get better. Eternal optimist I guess…

Round 2 – Push#2

After yesterday’s push and having two reactions from it my body was not in good shape and I felt like I was having a slight reaction throughout the day. I was achy, chilled and had some pain all over my body. Instead of going up 2 on my push I decided to go up 1 hoping I would have a stronger reaction. Stronger reactions are harder and suck way worse but they typically don’t last as long as mild one do. 

I got my push at 5:20pm and within 15 minutes I was starting to shake and was chilled. By the time I got to our room, got everything ready for my night of hell and laid down I was starting to shake harder and become more and more chilled. Then the pain set in and it was almost too much to take. It centered mainly in my hips which is what has been hurting mainly over the past few weeks, it then went to my legs and back up to my arms and stomach. The pain was severe and I started vomiting. 

After an hour I got into an apple cider vinegar bath to help ease the pain, luckily it helped. Then it was time for the “bake” portion of “shake & bake”, which consists of major sweating as your body is expending the toxins from your body. 

This push was so bad it had me thinking for the first time that I didn’t know if I could do another one. It was one of the worst ones I’ve had, the pain was almost too intense to handle. Having a reaction like that means it is killing the viruses and doing its job, but it really sucks. So of course today I’m heading in for my 3rd push, praying it will be the last one I need and I don’t have to return in January.