My blog is an eclectic mix of diagnosis, disease, infertitity and adoption; however, the title hints to the all-loving autoimmune disease so I wanted to share in a little more detail about my disease.
First, I don’t know much and sadly my doctors don’t seem to know that much either. While on Clomid, I had my first flare (which is your disease in action) and it included weight loss, joint pain, fatigue, depression, loss of appetite, fevers and overall achiness overall. However, since I was on Clomid, those are all included in the side effects for that drug as well. I love to sleep so fatigue did not seem that strange and I play soccer every week so I am tired a lot. I look back and don’t know when I started feeling unhealthy because I always felt a little out of shape. Maybe that fatigue was related to Lupus…maybe not. Many doctors are reluctant to say that my symptoms are all related to the disease and those of us that have it know we did not just wake up one day and stop taking care of ourselves. In the past year, I have been diagnosed with a variety of things including Rayneuds, anemia, infertility and multiple cavities and I know there is a cause for all that which could be my autoimmune disease. I am currently taking Predisone and Plaquenil, but only because we are learning the disease is attacking my hormones not because I am in a lot of pain. Thankfully, I am mostly pain free. When I work a lot, I get tired, but I can still do it. My vital organs are fine so far and the medication is to keep them that way.
This disease is crazy because a lot of the symptoms are internal which means many have no idea that I am sick. Sitting in the sun all day sounds good until you go to the doctor to learn your liver is failing. I don’t want to be on medications due to the side effects, but I am afraid to not be on them due to the damage. I am no longer trying to conceive so my doctor will try more medications, but we all prefer to handle this with as few as possible. I have baffled many of my medical experts with bloodwork that does not always make sense so I am still a work in progress. The hardest thing is that each doctor knows about their ONE thing, but not about the other things, so I am constantly the go between of at least three specialists.
My disease is hard, but I am blessed because I still lead a very busy life and can do pretty much everything I did before with some awareness. I am not sure if that will be the case forever, but it is for now and I am grateful. I am reluctant to complain because I know others have it worse, but I also want to be honest so people know that I am not making it up. There is a fine line and it is hard to walk it. I am an athlete and I hate being weak or making excuses, but I also want to give a reason for why I need to sit down because I have a good one. Due to my athlete mindset, it is hard to quit or take time off and sometimes that is just what I need. If you want to know more about Lupus I suggest you google it because I am learning about it too. What I do know is that my symptoms are mild compared to others because I can still work a 10 hour job.
My biggest change is that I used to work a ten hour job then go work out before coming home to rest. Now, I work then come home and rest so that I have strength to get up and do it again tomorrow. I have noticed having to slow down with a few things and the number one change to is to be aware of the sun and the effects in can have on my body. I used to go outside for everything and I now I know better. But again, I am really blessed and I do feel have little to complain about compared with others. I am now taking two medications and six vitamins daily and will likely get on Hormone Replacement Therapy soon. When I don’t take the pills my world falls apart so thank you Jesus for medicine! I am now using a fancy pill holder and feel more connected to my grandmother than ever 🙂 The rest we will learn together as we go, but the short of it is Lupus can affect it all and for me it has mosty affected my hormones and blood. I have it pretty good.
I just stumbled upon your blog and am in a similar situation. Infertility + “maybe lupus” is a horrible place to be. I’m still a mystery case to my doctors and am constantly struggling for answers. This might sound weird: would mind emailing me so we can share our stories? Perhaps we can learn something from one another? email@example.com.
I will email you tonight 🙂
Hi there, I came across your site and felt compelled to reach out to you. I have been diagnosed with lupus nephritis for the past eight years. I was diagnosed at the age of 22 after waking up in the middle of the night one night crying because my arthritis had progressed to the point where I could not get up or move at all without being in horrible pain. It was found that I was also quite anemic and my kidneys were leaking a lot of protein and blood. I was diagnosed with stage 3 nephritis following a kidney biopsy and put on Cellcept, prednisone and plaquenil along with medication to control my blood pressure.
I’ve read through your posts and I just wanted hopefully give you some hope and to let you know that it sounds as though some of the information your doctors have given you might not paint the full picture of lupus and pregnancy. I am currently pregnant for the first time after having worked for many years (and through one really bad flare) to change my medications and get my body healthy enough for pregnancy. One thing for sure that I’ve been told by my perinatologist, several rheumatologists and several nephrologists is that prednisone and plaquenil are two drugs that are commonly used in pregnancy. I’ve been told repeatedly that if (God forbid) I have a flare during pregnancy they will be using steroids to control it because it is “safe” (as safe as any drug can be) to use during pregnancy. I’m not advocating that it’s necessarily the right time for you to TTC but I just wanted to let you know in case you ever do feel like you want to TTC again that from everything I’ve read and been told by many doctors, prednisone/plaquenil are not drugs that are prohibited during pregnancy. I was actually surprised to read that that seems to be the message given to you by your doctors.
It is definitely scary to have lupus and to be pregnant, but a lot of it is about getting pregnant at the right time. Research shows that if you haven’t had a flare in the past 6 months that you have a very good chance of having a healthy, successful pregnancy. That has always been stressed to me as the key to a successful lupus pregnancy – the right timing.
I hope this post isn’t offensive to you in any way, I really just wanted to reach out to you and hopefully give you some more information about lupus and that it doesn’t have to mean the end of your hopes of being pregnant someday (if that is still what you want, I can totally understand if it isn’t as a lupus pregnancy will always be considered a high risk one). I would love to email with you if that’s something you’d be interested in doing…thewinglessoneATgmail.com
Thank you for your comment. It does give me some relief that if anything were to happen that these meds won’t hurt the baby or the pregnancy. We are pursuing adoption whole heartedly, but I am choosing to not get back on birth control due to my hormones indicating a low chance of getting pregnant. However, I have often wondered if the Lupus is under control with medication, will the hormone levels go back to normal? The doctors say no-the damage is done, but they’ve been wrong about a lot already. We are choosing to say no to IVF, IUI, or donor eggs due to the high costs and the high possibility that it would not work, but miracles happen everyday. If it is God’s will, then we will welcome a pregnancy with open arms. My main prayer in all this is I want to be a healthy and active mother and I have read some blogs where Lupus patients had a healthy baby, but it did a number on the mother. If that is true in my case, then I am thankful to adopt! Thanks again for your information since it is very comforting and gives me some hope to not be afraid.