Deena BinghamI haven’t blogged in a long time. I’m not sure why, there are many reasons I suppose. Some possibilities and thoughts are; I hit a plateau and felt stagnant in describing my Lupus journey, the major Lupus flare I experienced made it hard to form thoughts, I lost my words and I also lost my voice for a bit. To be honest, when I started the blog I was doing well and thought I could be an inspiration to others fighting chronic illnesses, and I still believe that, but for a while I believed what I had to say wasn’t important or I didn’t want to seem like I was saying, “whoa is me” all the time. I was wrong. I need to not only share the positivity, but the negative as well. I always said you need to know you are not alone in your journey and that includes the good, the bad, and the ugly tears. After reading some of my old posts, I tell people they shouldn’t let their disease define them, and lately I have been doing that. But my diseases do not define me, I just lost my way. Even living with Lupus, Crohn’s, chemo and more I am finding my way back to the light again. I promise I am not going to the dark side and I still want to be an inspiration to all of you!
The last couple of years, my CNS/Meningitis Lupus has controlled every aspect of my life and is severe enough to put me on long-term chemo. To be able to write my thoughts down is therapeutic to me, so I’ve decided I needed to share this journey again with you because all aspects of our chronic illness journey needs to be validated.
Let’s Play Catch Up
Most of you already aware of my backstory of the last couple years, but I’m going to fill in the blanks a bit and reiterate some of my last post before we get to the current bits.
I have Lupus. CNS Lupus mostly attacks my central nervous system as Aseptic Meningitis, I also have Crohn’s disease, Asthma and an IGG deficiency. Goodness! On paper, I’m a mess!
An update that I posted in December 2020:
For a few years I had been doing pretty well, except for a few flares and hospital stays. That changed in the summer of 2018. My body rejected my IV meds I was on for 5 years and it was really helping, but I was going into an anaphylactic response when I received the medication. My team of Doctors could not find something that would work. I don’t medicate well, and my body rejects lots of medications. Throughout the year, I steadily got worse.
The end of Summer 2019 I lost partial use of my right side, had a constant tremble, was having trouble forming thoughts, using words, I was stuttering and having extreme migraines. I was growing weak physically and mentally from having a complete flare for an entire year and being homebound.
My Doctor called in Home Health and Hospice Palliative that summer to help me recover. They brought me a walker, Oxygen to use at night when I sleep and took excellent care of me. They did physical and speech therapy and they met most of my medical needs at home rather than me risking germs in public and possibly getting sicker.
I was in constant pain everywhere, so my Rheumatologist then tried an RA medicine and again my body completely rejected it.
That meant that I had tried every drug available to me and still continued to grow weaker. They had prescribed me chemotherapy to put me into partial or complete remission. They use regular chemo (Cytoxan) for extreme cases of Lupus. I had my first treatment on the 11th of November 2019 and I received a high dose of Chemo every four weeks for six months, and then every three months for a year. Yes, it is regular chemo; I got sick; I lost my hair, but it has since come back at an unusual speed, and I had to be very careful of germs and still am, especially now in Covid world. I am still living in a camper by my house since my husband and daughter are working and going to school. Though my husband has had both shots of the Covid vaccine and my daughter has had her first. The hope is, even though I can’t get the vaccine, I can move back into the house in May. Yay!
It has been a very isolating 2 years, but I know others are also in the same boat I am right now. I am extremely blessed to have housing options and the ability to isolate in my Covid free bubble. A wonderful husband who brings me everything I need and whose primary concern is always my comfort and health! Also, Amazon is a lifesaver!!
Some good thoughts before we continue, I am flaring and haven’t been well lately, BUT; I have not been in the hospital since January 2020. In the fall of 2020, God had steadily instilled in me a peace and contentment that has always eluded me. I admit, this past summer mentally was terrible for me! But I am learning to embrace my isolation. I can now give myself SCIG (IV Subcutaneous Immunoglobulins) at home. Thankfully, I don’t have to go into the hospital for IVIG monthly anymore. I can give myself the infusions of plasma at home and it is one less place to pick up germs. This has improved my quality of life! I never knew how fatigued I was my entire life until I had a steady stream of Immunoglobulins in my system!
Current situation:
When I was receiving the monthly infusions of chemo I started getting a brief glimmer of remission, but when we switched to every three months I flared more frequently again. A couple of weeks ago I had to receive one gram of Solumedrol (steroids) and felt horrible. This month was to be my last IV chemo treatment but sadly after having a major Lupus flare again, we canceled that appointment and my doctor put me on 100mg of oral chemo daily, still Cytoxan, for the next 6 months to a year. This will keep a steady flow in my system and I continue to hope that remission will happen.
When I learned this news, I admit, I went into a deep depression and even though I did not question why me; because I know God always has a plan, I did question what His plan was. I’m all about being an inspiration to others, but I just wanted to be disease free, healthy and pass that lantern. Why am I fighting Lupus, Crohn’s, Asthma, an IGG Deficiency, NASH, one would have been enough?! I had quite a few weeks pity party for myself. But, since we decided on a treatment plan, I feel better mentally because I always need a plan. I need to know exactly how I am going to fight. I think we all have some warrior in us that wants to know who or what we are fighting and how we are going to win. I admit, I was feeling quite sorry for myself. For just a moment I was tired of fighting. My hope was fading and I didn’t see any light at the end of my struggles, but my hope and peace for the future has been somewhat restored, I still don’t know what God’s plan is in all this, but He sure does! I am holding on to the hope that I will achieve complete remission at the end of this battle. And I have some serious prayer warriors backing me up!
Today is my 5th day on the oral chemo and I can feel my energy draining a little each day. Last Wednesday was a hard day because besides being tired from my meds, I had to do a plasma infusion and it totally wiped me out. I am discouraged because even though I am writing this post; I am finding it difficult to concentrate. I am grateful that I now have another course of action, but I do worry about the long term effects of the chemo and the immune suppressing medications I am on. I am trying to find a balance between holistic, diet and chemical approaches to my health. It’s a very intentional way of life and can be daunting at times. But I am doing everything I can so that I can see my grandchildren grow and have a long happy life with my husband and family.
I want to be real, raw and honest with you for the next year. Maybe my journey will help you in some small way.
God bless you all and I hope and pray that this blog will help you know you are not alone, that there are others that celebrate your triumphs, are with you in your struggles and make your obstacles a little bit easier to handle. Find your light and joy today and I will try and find mine!
Deena, Lupus Warrior
