*Warning: medical post
I have been debating for several weeks, maybe longer, how to write this post. Most people look at me and think that I am completely fine. I may be seen moving slow or have trouble getting up at times. I might even be seen having a hard time getting the right word, but over all, I look basically fine. Many of you know that I have lupus-SLE, and some of you have read about my autonomic dysfunction ( https://fikeadventures.com/autonomic-dysfunction/ ), and some of you are aware that I have very severe migraines. From here, things get quite complicated.
The Bible says that we are supposed to pray for each other and to share our burdens. I don’t know why it is socially unacceptable today to let people know about medical illnesses. It is almost like people need to keep their sufferings so quiet and to themselves. So many people go about their days not telling anyone that they are suffering from “invisible diseases”. Just because a person looks ok on on the outside, doesn’t mean they are. Honestly, the same goes with mental health issues, so many people are suffering quietly, and no one knows. They look fine on the outside, but they are being destroyed internally. Just like we should not judge a book by its cover, We should not judge a person by their cover. We need to pray for each other. How can we pray for them, if we do not know that they are sick?
James 5:16 – Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.
I want to share three of the other medical issues that I have been dealing with…not for sympathy, but for awareness, and also, to explain why I don’t participate in some things or don’t physically help out at times. I tend to do things in my time, as I am able.
Myositis and lupus
Lupus is an autoimmune disease; myositis means muscle disease. Lupus can attack any part of your body, treating it like a foreign invader. Lupus is attacking my muscles. I’ve had muscle pain for many years. It seems to get worse with activities, and gets better after short periods of rest. The muscles affected are my trunk muscles, and large muscles closest to the trunk. They feel very over worked. I’ve had testing done, (EEG, EMG/ nerve conductive s, swallow test, lung testing, and muscle biopsy). All test showed irregularities. After many visits with the rheumatologist, the doctor came to a diagnosis of lupus myositis. Myositis makes me physically worn out at times. Occasionally, my leg might threaten to give out, or I feel very weak. I have 40% dismotility in my esophagus. My lungs have nodules and ground glass (not actual glass-might be from covid pneumonia). We started several meds to fight this. If you want to know more about myositis, click https://kaleidoscopefightinglupus.org/myositis/
Pseudotumor Cerebri
This was my first migraine diagnosis. Also known as Idiopathic Intracranial Hypertention, there is excess spinal fluid in the brain, characterized by the “empty sella” sign. The original name of “pseudo tumor cerebri” is because it acts like a massive tumor on the brain, interfering with some of the functions. The medication for this reduces the spinal fluid, but makes me very thirsty. Here are two links for those interested. You can find more about this by clicking https://www.hopkinsmedicine.org/health/conditions-and-diseases/pseudotumor-cerebri and
https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/symptoms-causes/syc-20354031
Cerebral CNS Vasculitis
Probably the most debilitating thing I have been fighting is severe migraines. These are daily. Some lasting hours, some lasting days. Part of the time, I can reduce them with a nap, but that doesn’t take them away, only reduces the intensity. Some of the symptoms that come with these migraines are: not being able to find the right word, trouble getting words out, memory blocks, walking diagonally instead of straight, feeling confused or dizzy, aversion to lights, smells, and sounds, and vision changes.
I have tried MANY medications from the neurologist. I failed all of them. They would not touch the migraines.
We knew two things that worked…fioricet and steroids. The doctor did not like giving fioricet, because it is a narcotic pain medicine. I agreed, but find me something that takes away the pain. The steroids given in the ER migraine cocktail also worked, but they didn’t want to keep me on steroids. I have had lumbar punctures with elevated protein.
Finally, right before Thanksgiving, the neurologist and rheumatologist talked. They decided it was time to completely rule out vasculitis. I had the option of waiting for an invasive test, angiography, or trying meds to see if they worked. We chose a short trial of meds.
Now, many of you know that my mom had neuro vasculitis, was diagnosed after a massive stroke at age 30, and past away a few years ago from it at almost age 64. It had spread to every organ in her body. This has been a deep concern of the family for years, that my migraines were really vasculitis.
Back to my doctors, they said if the medication doesn’t work, I will still need the angiogram to rule it out completely. I told the doctor that I was tired of continually trying new meds, and it always coming back to “lupus must be causing the migraines”. She asked if we could just rule the worst one out, and then we will go down a different path. We agreed.
I was greatly surprised when the medicine worked. It reduced my migraine significantly. It felt like a tremendous weight had been lifted from my head and neck. This has continued since I started right before Thanksgiving. Jeff says that I am a whole new person. We are waiting for confirmation that this is vasculitis, and if it can be diagnosed from history and response to medication… or if they will make me go through the angiography.
The doctor did say that treatments have advanced in the past 35-40 years. But she would get into that later. While I was at her office, she heard swooshing sounds in my neck. I need to go for an ultrasound to see if they are partially blocked or inflamed.
Vasculitis inflames and narrows the blood vessels. The back up of blood can cause aneurysms or strokes. They believe mine also is causing inflammation in the central nervous system since the trigeminal nerve is greatly affected. They now call the disease cerebral vasculitis or cerebral CNS vasculitis. If you want to know more click https://www.vasculitisfoundation.org/education/forms/central-nervous-system/#1545061074385-4a318c45-7c9f and https://my.clevelandclinic.org/health/diseases/13205-central-nervous-system-vasculitis . Central nervous system (CNS) vasculitis is inflammation of blood vessel walls in the brain or spine. (The brain and the spine make up the central nervous system.)
In conclusion, I did not share all of this so that no one ask me to do anything. Please ask, but if I say no, or not right now, there is a reason. Another reason for sharing is that people tend to ask, “how are you doing?” My flat answer is, “I’m good.” I’m not going to tell everyone what hurts at that moment… it could change in a few minutes or a few hours. It is always fluctuating. If I am in severe pain and need help, I will let the right people know. When I am out and about, I focus on the reason for being out. I can ignore some pain for a few hours of low activity, but sometimes it cost me later. Shopping is something that completely wears me out. So, I do most shopping online and get it delivered or someone picks it up. Some days I will feel very well and try to get more done, only to be paid back later by needing more rest. I want people to treat me like a normal person, with the understanding that if I am not speaking correctly or forgetting a name that I know very well, it is not because I don’t care, it is just my weird medical issues coming out.
We all carry a cover to ourselves, just like a book. Many people look good on the outside but inside are hurting in various ways. We can’t judge a book by a cover, why do we judge people by a cover? Possibly, if we share some of the trials we are facing, we can help each other and pray for each other.
Please pray that the meds keep all of my issues under control. It is often said that autoimmune diseases come in multiples. I know the potentials of these issues. I don’t want them to control my life. I try to live as normally as possible. Some days that may mean resting in the recliner while the house still functions well, some days I may need long naps to defeat the extreme fatigue. My family works with me to make sure everything gets done, and everyone helps out. My kids are becoming amazing cooks, can clean a house (when needed🙄), do laundry, garden, and take care of multiple animals. They do all this, and complete their schoolwork. I even have a guard dog and cat that protect naptime. Seriously, the cat will yell at anyone coming in the room if I am sleeping, and both the cat and dog sleep with me on the bed.
I know that God has allowed these medical problems to come into my life, and my family’s lives for a reason. We may never know that reason. There are several reasons God allows trials into our lives. My job, and my families job, is to love and worship God in all things. I also know that God is with me through every trial.
“But he knoweth the way that I take: when he hath tried me, I shall come forth as gold.” Job 23:10
Isaiah 43:1b-3a
Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine.
2 When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.
3 For I am the Lord thy God, the Holy One of Israel, thy Saviour:
If you have an invisible illness and want to share, please feel free to comment or message me. I totally feel that people need to be more open about the struggles they have that are hidden. Today, people feel like an invisible illness is like a bright red label attached to the cover of their book. There is so much we can learn from people who struggle and keep going. Let’s not be afraid to share about our afflictions .