I thought today would be "Normal".

I woke up today feeling great. My rash and sensitivity was very mild, no aches, no nausea. I had so much energy. I even said to myself. "So this is what normal feels like?" I had forgotten how good it feels to feel "normal". I am still not on any medication, but I just thought that maybe my flare was passing on its own. I did the morning routine with the kids, and was even planning out my home school schedule for the kids next week. I have gotten behind on their schedule and I am really going to have to play catch up with them.

 I was just doing my thing when all of a sudden I started feeling it again. It is hard to explain. It is like I am feeling a fever coming on. I start to get achy, my skin got more red and sensitive, I started to feel really cold on the inside. I felt almost shaky, but not in a diabetic-low glucose kind of shaky, just nerves shaky. As I feel my joints ache I try to analyze what is going on so when I ever do get to a doctor, I can explain what it feels like. That is when I noticed that it isn't even my elbow joint that hurts, but the inside of my arm, at the elbow. Kind of like the place where they draw blood. But it  always happens with both joints at the same time. I was also having wrist pains that seemed to change location. I know some of you reading this will think that I am crazy, but I also know there are some that may say, "That sounds just like Me!" When I do get a diagnosis, I will have to update this post and label it with the correct "Invisible Diagnosis".  :-)

So what did I do....

I took some aspirin, pushed on for a few hours, and then went down for a nap when it was the littlest ones nap time. After a good nap I got up, felt better but not "normal" and carried on.

So now what...

Should I get upset that I didn't have the day that I had planned out, complain about how bad I felt, or... be thankful for the reminder of how "normal" feels and keep hope that in the near future I will have more "normal" days than sick days.

Wishing you all a normal day today as you read this and carry on with your I.D. (Invisible Diagnosis)

Bonnie
Writing from Tanzania, Africa

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Why are some patients at risk for Blood Clots and Miscarriage?

Every time I start to research something I always end up finding out something completely different than what I started looking for. I wanted to find out the recommended Aspirin Dose for Lupus, and ended up finding the answer to the question above. Here is what I found.

People with a diagnosis such as Lupus, Sjogren's Syndrome, Fibromyalgia, and Thyroid Disease may also have a condition called Hughes Syndrome. Hughes Syndrome is also known as "sticky blood". It is basically when the blood has an antiphospholipid antibody. This can be detected through a simple blood test.

In my research on Lupus I kept coming across information that said Lupus patients are sometimes at risk for blood clots and need to take low dose aspirin. From what I understand, this is why. I have also read that they are at a greater risk for blood clots and miscarriage. Again, I imagine Hughes Syndrome- the antiphospholipid antibody- is the reason.

The different names for the same thing: Anti Phosholipid Antibody Syndrome (APS) or Hughes Syndrome or even Lupus Anticoagulant.

How common is this for Lupus patients?

According to the Hughes Syndrome Foundation, 1 in 5 Lupus patients will also have Hughes Syndrome- the antiphospholipid antibody.

So how does this apply to me?

If I have a Lupus (SLE) diagnosis, then I need to add the antiphospholipid antibody (APA) blood test to my list. If I am positive for it, then I will know what I am at risk for and how to manage "another symptom" better. I also now understand the WHY behind the causes of blood clots and miscarriages.


Questions that I ended up having after I found out this information.
(I told you that I always end up getting off track and end up looking into something else.) 

Is Fibromyalgia an auto immune disease?

How much does an antiphospholipid antibody (APA) blood test cost?

I will have to wait to answer these for now.

Until next time...

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One reason Why someone with Lupus would get a false positive for Syphillis?

Wow, I absolutely Love it when I actually figure out a Why with something. (Yes, I know I am a little strange.) But I know that there are others out there asking these same questions, so that is WHY I am making a blog about all my "fun" discoveries.

Ok, so when I did my own internet research of my symptoms, and came up with my own Lupus diagnosis, I made a list of test to get done. I had read that some individuals with Lupus will get a false positive for Syphilis. I had no clue why, but I thought that it couldn't hurt to have it done.

(If you didn't already know, I am a missionary in Tanzania, Africa.)

It was so embarrassing to go the the clinic and ask them if they could do a Syphilis test. I couldn't explain my full thought in the language of Swahili, and they didn't understand English. So I couldn't explain that I was really testing for Lupus because I was thinking that I might get a false positive on the Syphilis test. So I had to just grin and accept the fact that if I did have a false positive, they would just think that I had Syphilis. I wasn't sure how to actually feel when my test came back negative. I thought that maybe if it was positive then I would know more for sure that it was Lupus.I then wondered why only some people test positive.

Okay, follow long with me here...

Today I found out why some individuals with Lupus are at risk for blood clotting and miscarriages.
This is because of (APS) an antiphospholipid antibody that some have, which causes "sticky blood."
According to the Hughes Syndrome Foundation, 1 out 5 patients with Lupus will have this.
And according to the answer from John Hopkins Medicine, 50 % of Lupus patients will have it. 

Now I just read on the Lab Test Online website- last line:

"The reagents used to test for syphilis contain phospholipids and can cause a false positive result in patients with antiphospholipid antibodies.

So if I am understanding this right.... If I am having a Syphilis test and they are using "stuff" that has Phosholipids in it and my blood had Antiphospholipids in it. Then the Pho and the Anti ain't gonna to mix. (Do you like my Texas slag) :-) And This is WHY it causes the false positive.

There may also be other reasons, but this one seems to be the main reason.

What does this mean to Me ?

That the reason I probably Did Not have a false positive is because I probably don't have Hughes Syndrome. 

If I were to have a false positive on a Syphilis test, then I should also have an antiphospholipid antibody test to see if I am at risk for blood clots or miscarriages.

Now I may be Way off on this, and please feel free to correct me in the comments below. The more I study my Invisible Diagnosis, the more I realize the depth of all of it.

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All About Vitamin D

If you have Lupus, Fibromyaligia, or MS your doctor may prescribe you a vitamin D supplement. It is important for fully understand every medication, vitamin, and herb that you put into your body. If helps to know Why you are doing What you are doing, and how it is suppose to be helping you.

Here is the Link- All About Vitamin D

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Vitamin D and Lupus

I kept talking to others with Lupus who mentioned that they had low levels of Vitamin D when they were first diagnosed. I have heard someone say, "It was like my body was craving the sun." I don't know if my vitamin D level is low, but I have felt this exact way before. There were a few days when I would go outside and lay down on a blanket in the yard while the kids played. But then... that is also the same time that I started having photo-sensitivity. I came back in the house after only 20 min. and my skin felt so sun burned. I usually go outside for much longer without any problems. I still want to go outside and just lay in the sun on the green grass, but that will have to wait until I figure out what is going on with me, and get it under control.

The other day I started doing my own research on Vitamin D and found this link Very helpful. It basically says that Lupus patients should also be on Vitamin D to help with their treatment.

"Repletion with vitamin D should be carried out among SLE patients to prevent their suffering from becoming any worse. Thanks to the research carried out at the University of Oklahoma, it is evident that such a course of treatment is necessary."

Here is the link. http://www.medicalnewstoday.com/articles/232288.php

Has anyone else had a craving for the sun? 

Do you have Lupus and take Vitamin D supplements as part of your treatment?

If so what is the dose and frequency?

Please comment below and help us out....

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What is an Auto-Immune Disease?

Wikipedia's Definition:

"Autoimmune diseases arise from an inappropriate immune response of the body against substances and tissues normally present in the body. In other words, the immune system mistakes some part of the body as a pathogen and attacks its own cells. This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places (e.g. Goodpasture's disease which may affect the basement membrane in both the lung and the kidney). The treatment of autoimmune diseases is typically with immunosuppression—medication which decreases the immune response."

My Definition: For whatever reason... Your body is trying to kill itself. 

Please note that immunosuppression medications are not always used. 

It  really just depends on the disease. 

I know that probably doesn't make you feel better to read my definition without all the medical jargon, and blah, blah, and if you have just been diagnosed with an Autoimmune disease then you need to hear the facts straight up. To carry on with something like this on a day to day basis it is going to take guts, courage, and hard work. We can do it Together !!!

List of Auto-Immune Diseases:

I could try to list them all but Wikipedia does a better job of it, so here is the Link to Wikipedia. 

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What is an Invisible Diagnosis?

An Invisible Diagnosis or I.D. is a name that I came up with to describe a wide variety of illnesses. They are something that you normally wouldn't "see" when looking at someone. These may include such things as Lupus, Celiac Disease, Fibromyalgia, Multiple Sclerosis and More.

Many people may actually have more than one of these at the same time, and they can be confusing to understand. There is a large population of people that are struggling with these health issues on a daily basis. Others may not even know that they have these struggles because they don't always look or act sick.


I have chosen the name Invisible Diagnosis, instead of something like- Invisible Disease or Illness. I personally get enough daily reminders that I am sick, and the word- Diagnosis- makes me feel a little less dysfunctional. :-)

It is funny because this is my first post, and I don't actually have a diagnosis... yet. Like many with an I.D. - it may have taken, or will take, years for you to get an actual diagnosis. If you don't have a diagnosis yet, then I hope you find this website helpful in getting one. It is also my hope that it helps others along the way in understanding the Why in many things that go along with their I.D. (Invisible Diagnosis)

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