I’ve missed all of you, and I hope that everyone is well!
It’s been 6 weeks since I took hiatus from my blog although it doesn’t feel that long for some reason. I’ve been meaning to write this post for a couple of weeks now but since this might be my most personal post yet, no, it is my most personal post yet, I’ve had to work myself up to putting my thoughts into words. A part of me was hoping that if I kept the thoughts to myself then they just would not be a reality or my new normal. But many of you are not only followers of my blog but have become my dear friends, which I never thought would happen when I started my blog, and I wanted to share with you what has been going on with me over the past few weeks because I value the gift of your friendship. I apologize to so many of you for being absent and silent the past few weeks, but I’ve honestly had a trying time adjusting to everything and some of the changes that have happened since I have spoken to so many of you! But please know that I have thought of so many of you and value dearly the messages, emails, DM’s, etc that so many have sent me! You have no idea how much they have meant!
Most of you know that I took hiatus from my blog because I had been having daily severe headaches and my Dr ordered me to take a blogging break, well a screen break, and get more rest since I was exhausted from not sleeping and just doing too much between teaching and taking classes. If you read my hiatus post in October, then you know that my Dr was sending me for bloodwork and an MRI just in case since I have several autoimmune illnesses, and often when you have one autoimmune illness you are prone to having others. In case some of you might be wondering what an autoimmune illness is, it is when your immune system goes really crazy and can’t tell the difference between the healthy cells in your body and the bad ones. So instead, your immune system becomes overactive and starts attacking and destroying all the healthy cells since it can’t tell the difference between the two. Depending on what part of the body is going crazy, it produces antibodies to target those tissues; for example, I have an autoimmune thyroid disorder, so my thyroid cells think they are bad and have produced antibodies that attack my thyroid because it thinks it is bad. Crazy, right?
I’m not going to go into details about the very, very long and sometimes very painful ordeal that I have gone through over the past 6 weeks because then this post would be even LONGER than it already will be, but I do want to say that I am enormously grateful and so thankful to my neurologist for taking my symptoms seriously and instead of just writing them off as being my migraines and just eyestrain that he made sure it was not more serious and pushed for test after test even going toe to toe with my insurance to get some of them approved! And paid for! Because he was right, what I had was more serious than my migraines and too much screen time.
Anyway, after undergoing two head MRIs, a spinal MRI, a lumbar puncture, a kidney ultrasound and x-ray, and multiple doctor visits with specialists: my neurologist, my rheumatologist, and a nephrologist, I was finally diagnosed with lupus, or systemic lupus erythematosus (SLE) with central nervous system involvement, also known as CNS Lupus, which is just a central nervous system manifestation of the SLE. My brain MRI found 2 very small white matter lesions, or what my neurologist is calling scarring on the brain that is a result of the CNS involvement and although they can be very serious, even fatal, right now they are attributing them in part to the cause of my severe headaches in what is called a “Lupus Headache” and monitoring them for any signs that they will cause bigger issues down the road.
SO!! What is lupus some of you might be asking? I know that was the first words out of my husband’s mouth only not as nice, but I’m keeping it G-rated here! I’ll explain it here as best that I can and add some links to some websites if you want to check them out! Maybe some of you have heard recently that Selena Gomez has lupus and just had a kidney transplant because of the disease? And maybe some awesome graphics will help explain the disease too!
First, though, I want to say that lupus is something that my Drs have suspected that I have had for almost 17 years!! That is right, 17 years!! So, it actually came as a relief to me to get a diagnosis since I now have answers to why I feel so terrible almost every single day-on top of having fibromyalgia that makes you suffer through hell too! But it took so long to get a diagnosis (which is really actually normal for most people just like it is normal for a lot of people to be diagnosed with fibromyalgia first since the symptoms overlap) because even though I had symptoms of lupus: anemia, arthritis, blood and protein in my urine every year for 17 years for no apparent reason, being the biggest symptoms of all, I never had a positive Anti-nuclear Antibodies blood test that 98% of people with lupus test positive for. And to be diagnosed with lupus, you have to meet 4 out of 11 diagnostic criteria. I’ve been walking around for 17 years meeting 3 out of the 4. Until now. But it’s also been over 5 years since I have had the bloodwork done so I could have had a positive ANA before now and just not known. I wish I knew the answer to that!
What is Lupus:
Lupus is a widespread and chronic (meaning long-term or lifelong) autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood, or skin. Lupus is one of America’s least recognized major diseases, despite the fact that upwards of 1.5 million Americans and over five million worldwide suffer with this debilitating disease. (http://www.mollysfund.org)
Symptoms of Lupus:
- Brain and Nervous System: persistent and unusual headaches, memory loss, or confusion (brain fog).
- Lungs: lupus can damage the lungs through pleurisy and pneumonitis (inflammation), or pulmonary emboli, resulting in shortness of breath and pain in the chest from deep breathing.
- Renal System: About half of systemic lupus erythematosus (SLE) patients will develop some form of kidney inflammation, called lupus nephritis. This inflammation can lead to kidney failure, but like most lupus symptoms the effect on the kidneys is quite variable and hard to predict. Increased protein (showing as blood) in the urine, swelling of the feet and legs, and high blood pressure can be indicators that the kidneys may be affected.
- Eyes: damage to nerves and blood vessels in the eye might be evident, leading to dry or puffy eyes, and increasing sensitivity to light.
- Mouth: sores inside the mouth are a common symptom of lupus.
- Skin: lupus is known for producing a distinctive “butterfly” rash on the face, usually over the cheeks and bridge of the nose. These rashes can be exacerbated by sun exposure (photo-sensitivity). Hives or sores may be present, which worsen with sun exposure, and sudden and unexplained hair loss could also signify lupus. There are several types of skin lupus, called cutaneous lupus. Learn more about them here.
- Fingers, Toes, Tip of the Nose: fingers may turn white or blue with exposure to cold or during stressful situations, caused by the constriction of small blood vessels in those areas. Called Raynaud’s phenomenon, this condition is closely associated with lupus.
- Stomach & Digestion: lupus can cause or exacerbate ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent abdominal pain, bladder infections, and blood in urine.
- Legs, Joints, and Feet: persistent joint pain and swelling is a common lupus symptom; legs and feet may also swell. Rheumatoid arthritis is a common overlap disease with lupus.
- Fatigue and unexplained fevers (http://www.mollysfund.org)
I hope that information helps explain what I’ve been diagnosed with! I have so many of those symptoms and have for years. The hard part is that I also have fibromyalgia, which many of you who have been following my blog since May knows, and the symptoms of the two often overlap! I’ve been sitting here the past few weeks going “wait, is this a fibro symptom or lupus??”. And unfortunately, neither one has a cure, and both have “flares”! I could have a fibro flare or lupus flare at the same time, which I never want to experience!
Also, it seems though that what I thought was a fibro flare this summer when I just felt so, so awful and had to take my first blog hiatus was a lupus flare, and that I have been having one since last fall of varying intensity, but I just chalked it up to fibro! I should have known something was off after getting the flu, bronchitis 2x, and pneumonia 3x in a 7-month time frame that something was horribly wrong. And I honestly did, but I chose not to listen to that little voice. If I have learned anything over the past 6 weeks, it is to always listen to that voice telling you something isn’t right!
I have started treatment for lupus with high dosages of steroids and another medication, Plaquenil, which is an antimalarial drug. I’m hating the steroids since they make me feel yucky, moody, and have made me gain 15 lbs in 2 weeks. Ick! But, my headaches are starting to go away, and the pain is not as bad, depending on the day. I’m still so, so fatigued even though I’m sleeping-most nights, that is! I did take leave from work for several weeks to rest and get all this figured out, but I went back to work last week but have a co-teacher the rest of the semester for one class anyway to help take some of the stress off. At least there are only 3 weeks left in the semester for both teaching and taking classes! Yay! Then I get to take the rest of December off to rest and enjoy the holidays!
My doctors did want me to quit work and go on full disability starting as soon as possible, but I have decided to continue working for as long as I can since I can teach online classes from home and can “hide” my bad days at home. I’m very blessed in that respect to be able to teach online classes!
How will lupus plus the fibro affect my blogging? Well, fibro already affects it since there are days that I just can’t get out of bed and reading is just impossible. There are days that I feel like my head is in such a fog that I can’t think of what I want to say much less write, and I will literally stare at the computer screen for 5 or 6 hours before I can get a review written. It is terrifying sometimes since I sometimes wonder if I’m losing my mind, going insane, or getting dementia. I try to push through it, and I do what I can.
The good news is that I’m officially back from my hiatus BUT I will probably be posting erratically, at least for awhile. I may post 1x a week, I may go days or weeks without posting, or I may post several times a week; it is all going to honestly depend on how I feel. And then when I go back to work in Jan, it will all depend on how I feel with balancing work again since I’m not going to do anything to push myself.
I have promised myself not to push myself. That I have to come first. So I will check my blog when I feel rested and am up to checking on it and if I just can’t or don’t feel like it, then it will be waiting for me. I hope all of you understand! So if you leave a comment, I promise that I am not ignoring you, and I will answer as soon as I can!
Thank all of you, my readers, friends, publishers, for reading this REALLY, REALLY long post! I felt all of you deserved to know why I had been on hiatus for so long and why I will likely be posting erratically in the future. I love my blog, and I love the blogging community! Again, thank all of you for reading my book reviews, following my blog, and just being here! And for reading all this! It was hard to write, but it feels good to share it-cathartic somehow!
If anyone has questions, please ask! You can ask me in the comments, via email at firstname.lastname@example.org, or on Twitter @stephlvsbooks!
Great resources about Lupus:
Great resources about Fibromyalgia: