The muscle spasms have stopped completly only for my body to attack myself in different ways. I was getting rashes constantly that went as fast as they came and sores in my mouth. I finally got a rash that burnt so bad I decided I couldnt wait till March to talk to the rheumatologists about it.
The list of symptoms that were given to the nurse before the nurse practioner walked in was rashes on various parts of my body, mainly face, neck, legs, and ankles, mouth ulcers, fatigue and hair loss. The nurse practioner walked in and immediately said, "Do you have lupus?" I said, well I hope that you diagnose me and help me. She asked that just looking at the marker of lupus butterfly rash on my face. She then looked at the notes that I had given to the nurse, asked some more questions. One was, have you ever had any miscarriages. I didnt completely know the answer to that question so I explained. Before I had my 2 healthy babies I had 2 months in a row of positive pregnancy test even when I was bleeding. She explained that pregnancy test can be positive for up to a month after a miscarriage. I said that the second month it scared me so I went to the hospital and they said that my blood didnt show it and theres no way I was having a miscarriage. She said that my blood levels would already be to low for it to be in a blood test and that I had probably miscarried at least the first month. I had always just assumed the test were wrong and never really mentioned it to doctors when asked if I had any miscarriages. I guess now I know that me and Cody have lost at least one baby before Hailey. This information made a difference on the blood test that she was going to run on me. Im sure some of you that have had trouble carrying a baby and took blood thinners know what an antiphosphilid (sp?) spelling test is. She was testing my blood to see how thick it was. I said well wouldnt that be the opposite of the ITP? (auto immune low platelets) She said it can actually cause low blood platelets becuase the blood is so thick. The crazy thing is that I know my blood is thick from a blood test Dr. Weber ran like last month. We will see what that test says.
She then said the words I have been waiting to here. "We are going to help you." "So youre diagnosing and treating me with lupus?" "I sure am diagnosing you."
I will now be taking an antimalarial drug. Malaria from what I know is a disease that is found in other countries. I looked up why this helps lupus and found this information.....
----- Antimalarials block UV light from damaging skin; have an anti-inflammatory effect; lower cholesterol levels; inhibit clotting; block cytokines, which promote inflammation; & most importantly, alter the acid-base of the cells, which limits their ability to process antigens. (If antigens were processed, this would lead to the creation of unnecessary antibodies.) Antimalarials do not lower blood counts, or make patients more susceptible to infection.----
I was advised to stay out of the sun, becuase uv rays cuases flares in lupus, away from alcohol, and have low stress levels (yeah right).
I was given medicine for my fingers and feet turning white/blue when im cold, which is some syndrome name that goes with lupus but I cant spell it. I was given a cream for the rashes, becuase when it was suggested I take a few days of prednisone I said UH no.
She also explained that the rashes are from inflammation of my blood vessels and that I probably feel like I have a UTI when I dont from inflammation. The muscle relaxers did not work for me with the muscle spasms becuase lupus can attack your central nervous system and cause seizure activity, which would be nerves, not muscles.
For most people the news of having lupus would be devastating, but for someone that knows something is wrong and that I wasnt doing anything about it its relief. I've had it for a long time, so its nothing new for me, just a name.
The first picture is a picture of the butterfly rash. Its on my forehead, across my cheeks and my nose. It looks like a butterfly. The second picture is of a light rash on my hand, and the third of the rashes on my ankles.
The list of symptoms that were given to the nurse before the nurse practioner walked in was rashes on various parts of my body, mainly face, neck, legs, and ankles, mouth ulcers, fatigue and hair loss. The nurse practioner walked in and immediately said, "Do you have lupus?" I said, well I hope that you diagnose me and help me. She asked that just looking at the marker of lupus butterfly rash on my face. She then looked at the notes that I had given to the nurse, asked some more questions. One was, have you ever had any miscarriages. I didnt completely know the answer to that question so I explained. Before I had my 2 healthy babies I had 2 months in a row of positive pregnancy test even when I was bleeding. She explained that pregnancy test can be positive for up to a month after a miscarriage. I said that the second month it scared me so I went to the hospital and they said that my blood didnt show it and theres no way I was having a miscarriage. She said that my blood levels would already be to low for it to be in a blood test and that I had probably miscarried at least the first month. I had always just assumed the test were wrong and never really mentioned it to doctors when asked if I had any miscarriages. I guess now I know that me and Cody have lost at least one baby before Hailey. This information made a difference on the blood test that she was going to run on me. Im sure some of you that have had trouble carrying a baby and took blood thinners know what an antiphosphilid (sp?) spelling test is. She was testing my blood to see how thick it was. I said well wouldnt that be the opposite of the ITP? (auto immune low platelets) She said it can actually cause low blood platelets becuase the blood is so thick. The crazy thing is that I know my blood is thick from a blood test Dr. Weber ran like last month. We will see what that test says.
She then said the words I have been waiting to here. "We are going to help you." "So youre diagnosing and treating me with lupus?" "I sure am diagnosing you."
I will now be taking an antimalarial drug. Malaria from what I know is a disease that is found in other countries. I looked up why this helps lupus and found this information.....
----- Antimalarials block UV light from damaging skin; have an anti-inflammatory effect; lower cholesterol levels; inhibit clotting; block cytokines, which promote inflammation; & most importantly, alter the acid-base of the cells, which limits their ability to process antigens. (If antigens were processed, this would lead to the creation of unnecessary antibodies.) Antimalarials do not lower blood counts, or make patients more susceptible to infection.----
I was advised to stay out of the sun, becuase uv rays cuases flares in lupus, away from alcohol, and have low stress levels (yeah right).
I was given medicine for my fingers and feet turning white/blue when im cold, which is some syndrome name that goes with lupus but I cant spell it. I was given a cream for the rashes, becuase when it was suggested I take a few days of prednisone I said UH no.
She also explained that the rashes are from inflammation of my blood vessels and that I probably feel like I have a UTI when I dont from inflammation. The muscle relaxers did not work for me with the muscle spasms becuase lupus can attack your central nervous system and cause seizure activity, which would be nerves, not muscles.
For most people the news of having lupus would be devastating, but for someone that knows something is wrong and that I wasnt doing anything about it its relief. I've had it for a long time, so its nothing new for me, just a name.
The first picture is a picture of the butterfly rash. Its on my forehead, across my cheeks and my nose. It looks like a butterfly. The second picture is of a light rash on my hand, and the third of the rashes on my ankles.
Well there is so many things about this that make me want to cry (I hve tears in my eyes, but I know you would say its cuz I am the emotional one lol) I cant imagine how you feel with the news of the baby, that is so very sad.
ReplyDeleteThe diagnosis of Lupus, it still scares the shit out of me to be honest. Your so strong about this all and so open about talking about it. I have nothing but admiration for you. I just want to be able to put a bandaid on this all anf fix it :(
Everything is going to be alright =)
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