Archives For Living with Lupus

I am four weeks away from meeting my second child! It’s an amazing feeling knowing that we are so close, especially since this was a very long journey. With both of our boys we were not the lucky ones to conceive quickly. The first time around it took us seven months to get pregnant, while that is certainly not long compared to some people’s journeys it definitely is longer than we expected for being young and healthy. Little did we know that I had Lupus and it was playing a factor into me getting pregnant. This time around we were aware that it might take a while. But, I will say even though I thought it would take a while I did not expect it being a two-year wait.

Maternity_11I had weird symptoms for about four years off and on, but nothing that would tie anything together for the doctors to think, hmmm… maybe it’s Lupus. After my oldest was born I had a rough recovery and then around the time he was eight months old all the symptoms I had previously hit at once and more. By the time he was a year and a half I was diagnosed, finally. Truthfully, I was just glad to finally have a name, a thing, a reason for everything. I could finally know what I was working with. Getting any diagnosis is scary, especially one like Lupus since it is so mysterious and can attack any part of your body. It’s hard to predict and hard to treat. But, God gave me a peace from the beginning. My story is from Him, He has everything in control and Lupus is just part of my story and I have come to terms with that. He has plans for me!

Since I was young, one of the first things that the doctor asked was if I wanted to have anymore children. There was no question that I did, we had always talked about wanting to have a large family. But, it was going to have to wait… for the time being. Lupus patients can have safe pregnancies and healthy babies, but the best thing to do is first get it under control before putting your body through the stress of pregnancy. So that meant that I spent the next year working with the doctor to get everything controlled and to a point that I could get pregnant. That was hard, because by then in our ideal world we would have already been trying for another baby. Being told yes, but not right now is very trying…

After a year we finally got the okay from the doctor, everything looked good and we could try for our second child! Yay! And then came the next year… I honestly thought, oh it will take a while, but probably not longer than it took the last time. Well, it took exactly a year before we were pregnant. Since it was such a long wait I truthfully was in shock when I had a positive pregnancy test! You wait that long and eventually you start to think of it as a distant future thing, when it finally meets your present it’s so exciting you can’t believe it.

Fast forward a few months and I am sitting here, my oldest will be four next month and my youngest will be born within the next four weeks. It was definitely not the plan we had envisioned for our family, we had always pictured a two to three-year age gap. But, God has a much better, more beautiful plans than we can make for ourselves. Will we get to have four kids like we always imagined? I don’t know, and at first that saddened me. But now, I know that we will be given the number of children that God had planned for us from the beginning. If that means two, three or four it doesn’t matter, because whatever His plans are for me I am thankful! I am thankful to be called Mom and thankful for the two amazing little boys that God has blessed me with already.

The following post is a guest article written by Ruby Andrew. Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her articles have been published in leading UK newspapers. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle, Fitness and Health. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC card. 

Say “Hello” to Ruby Andrew

Systemic lupus is called “the disease with a thousand faces” in light of the disease affecting almost any organ of the body, and the symptoms resembling that of many other diseases. A condition in which the body isn’t processing enough red platelets; manifestations can extend from throbbing joints, fever, joint pain, exhaustion, skin rashes, and frailty. Lupus is a life-long battle full of the ups and downs and the uncertainty of how the disease can affect your life as well as the life of your loved ones. Caring for loved ones who suffer from Lupus is the biggest challenge in the life of the caretaker, as they need to cope with the physical and emotional sufferings of their loved one.Here are the few tips on how to take the best care of your loved ones with Lupus and how to safeguard the health of yourself.

1. Learn About Lupus

Lupus is a ceaseless, immune system sickness that influences nearly 1.5 million Americans. As information is a powerful tool, knowing the information about Lupus helps you to take better care of your loved ones.

2. Learn Early Warning Signals Of Lupus

As one might expect, the cautioning signs vary for every individual. Signs can incorporate hair diminishing, expanded joint torment, expanded exhaustion, and raised body temperatures. Signs and symptoms will vary patient to patient.

 3. Give Them Emotional Support

Besides the physical symptoms, Lupus profoundly affects a person emotionally well as.

Now it’s the time for the caretakers to build positive support for the people who are suffering from lupus.

4.Educate About Nutritious Diet

Learn with your loved one the best diet for their illness.

5. Take a Break from Lupus

Ask your loved one how they are feeling. Both the caretaker and the patient need to take a break from Lupus and enjoy themselves.

It’s not simple having lupus and it’s not simple being a guardian of a friend or a family member with lupus, on the grounds that you must be prepared for anything at whatever time. There are many help and supportive networks accessible to patients and family of individuals with lupus.

 

‘Tis the Season

November 29, 2013 — Leave a comment

Thanksgiving might be over, but why do we have to wait an entire year just to reflect on the things that we are thankful for? I know that I may not always remember, but I try every Thursday to post something I am thankful for, you might have seen me use #ThankfulThursday on occasion. I want to exhibit a spirit of gratitude all year-long instead of just waiting for the season to come around. So even though it’s the day after Thanksgiving, here are a few things that I am thankful.

Coffee mugs that put a smile on my face every morning

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My child and his love for all things Star Wars

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Finally knowing why my hands do this…

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Seeing the joy in my child’s eyes when he met Mickey Mouse

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Growing up with an amazing family… 

And finding super awesome old pictures of your childhood, that I am sure they will be so grateful I posted! :) 

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Having married my high school sweetheart and getting to walk through life with the most kind, patient and loving person by my side

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For having a husband who wants to play super heroes with our child. 

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For that moment when my son saw the ocean for the first time

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My forever accessory to life

My forever accessory to life

When my face is rash free, my joints are treating me nice and my fingers don’t go crazy white I can forget that I have an illness. Mostly when I have had weeks and even months of feeling better than usual. The thing about Lupus is that majority of the time it doesn’t show through on the outside. I look just like everyone else, I seem to be healthy but reality is far from that. There are times when I look into the mirror and think back to that moment I heard “You have Lupus” and find myself doubting those very words. Could it really be true? I have felt so good lately. I look okay. Maybe it was all in my head. But those thoughts come to a sudden jolt when I am reminded of my disease every day by my twice-a-day pill organizer. What twenty-something has a pill organizer? Just those that need one..

The truth is I am not in denial of my diagnosis. I’m actually okay with it. But sometimes I find myself looking and feeling like I used to and then everything becomes surreal. When I actually stop to think about those words “You have Lupus” it’s hard to believe. Not because I wish it weren’t so or because I fear what is ahead. It’s hard to believe because who thinks that they will have their world altered by words like that? No one. I seem to be healthy, and sometimes I even feel that way. But then I get reminded of just how invisible this illness really is when I wake up with achy joints and the beautiful butterfly rash to accent my face for the next several days and my stark white fingers that are my winter accessory. Truthfully it’s as simple as this… I don’t think about my disease all the time and if I am having several good days in a row I forget about this part of my life, that I have Lupus. But, I think that is a good thing because it’s pretty great that people don’t see me and see my illness. I will talk to people about it with all honesty, but I like knowing that it doesn’t have to be me. I think it’s okay to forget about your diagnosis because every day when I take my morning and evening medicine that is enough of a reminder. I don’t need to dwell on it.

I do not fear what is ahead. Rain or shine, God Has plans far greater than mine, and that includes my disease!

Go On, Admit It.

September 7, 2013 — Leave a comment

This is not an easy post to write. You see it is very common for people diagnosed with any disease to struggle with depression. But, no one wants to talk about it. Why? Because if you admit to having dealt with this issue then suddenly you will be seen as an emotionally unstable basket case. At least that is what we believe others will see.

typewriterThe truth is, it’s very common to deal with depression. In fact the Lupus Foundation of America states that “between 15 and 60 percent of people with a chronic illness will experience clinical depression.” That is a significant number! So why do we fear to mention this “symptom” of our disease? Because we are scared that others will view us differently. 

I have dealt with depression. There I said it. And honestly it’s not even easy for me to admit to you right now. I am actually sitting here thinking about your response as I type this.

At first I didn’t even realize that I was dealing with depression. I thought that I was emotional for one reason or another. When I finally began to realize what I was dealing with I didn’t want to admit it out loud because saying it means that it’s a reality. The thing is I wasn’t depressed about any one thing, I would find myself crying for no reason at all and frustrated that I couldn’t figure out why. I struggled understanding what was happening because I never really had a melt down after being diagnosed. There was a peace that I felt when I heard the words Lupus. There was finally a name to the problems I was having, and I knew that everything was in God’s hands. But, what I didn’t take into account was the changes that happened days, weeks and even months ahead. Fatigue that caused our family to end a Saturday outing earlier than normal, nausea that lasted all day, painful joints that left me sitting on the couch with heating pads all evening. It could be much worse, but it was change that I didn’t see coming. I also now know that certain medications can have a side effect of depression. Eventually my emotions began to shine through and I was able to see that yes, I was dealing with depression.

I don’t believe that depression is something that can ever truly be a hurdle that you leap over and never come to again with a chronic illness. The difference is that once you know it can creep up along your path at anytime you know what to do with it. For me, I look at it as another way to help others. You see I truly believe that my Lupus is more than just an illness. It is a ministry. If I didn’t battle with the things that come with my disease then I wouldn’t be able to encourage others in the way that I can connect with them now. So I write this to you today to say that it is okay to not be perfect! It is okay to admit that our illness stinks! It is okay to admit that your having a rough day! Because then we can stand together and fight our illnesses side by side!