Appointments and tests oh my….

Daily events . In between all the paper work for everything you need . I can barly move and i have to use all my might to keep going.

Pet Scan is schedule for friday but my arm are to beat up and i need to rest it is too long of a thing for me they wrote me a note no eating or drinking except water . For me that mean going off my routine and in turn will be very ill for a few days from that .Waking  to my daily severe headache , severe neausea and not being able to do anything to try to calm it down and the only thing i do is drink some coffee but i am not able to leave the house even for an appointment if im not able to do this ritual of coffee , bannana with medicine, Heat, ice, then aspiring for the head. Then taking  my medicine other medicne. I don’t want to go into the details of the yucky stuff .This entire process just to try to move and goes takes a min of two hours up to four on a good day and by the time done have to rest for one hour before leaving it has to be very planned out. If I do not have a bannana with the medicine then my gastropherisis gets to bad in the morning part of the morning is trying to move by coffee for my head pain , then lying on heat to loosen up , then ice to numb the pain (i do not take pain killers, just aspirin and ibuprofen) They also told me they may have trouble due to my veins that is another story and obstacle , I found out for this they can not use my foot so i need to postphone it and schedule one of the many other appointments in it’s place . 

WHY BUTTERFLIES

THE BUTTERFLY REPRESENTS FREEDOM, TRANSFORMATION, AND RECOVERY.  ONE COMMON SYMPTOM OF LUPUS IS CALLED A BUTTERFLY RASH. IT IS A RED RASH ACCROSS THE NOSE AND CHEEKS THAT RESEMBLES A BUTTERFLY.

THIS IS WHY THE BUTTERFLY HAS BECOME A SYMBOL OF HOPE FOR LUPUS PATIENTS . THEY ARE PRETTY AND IF IN PURPLE I FIND TO HAVE MORE OF A MEANING SINCE PURPLE REPRESENTS COURAGE AND ENDURANCE, SOMETHING WE NEED ! I LIKE TO PICTURE MY SELF BEING A BEAUTIFUL BUTTERFLY FLOATING AROUND BEING FREE MINUS THE RASH. : )

MAY IS LUPUS AWARENESS MONTH

MAY IS A TIME TO COME TOGETHER AND HELP RAISE NATIONAL AWARENESS FOR ALL FORMS OF LUPUS. THIS IS TIME TO SHOW SUPPORT FOR THE MILLION PLUS PEOPLE IN THE US WHO ARE AFFECTED BY THIS CHRONIC INCURABLE AUTOIMMUNE DISEASE. PLEASE VISIT LUPUSLA.ORG OR LUPUS INTERNATIONAL SOME OF MY POEMS HAVE BEEN PUBLISHED IN LUPUS INTERNATIONAL (WHEN I CAN FIGURE OUT HOW TO PUT IT ON HERE I WILL ) I CAN NOT WAIT TO SHARE MORE.

THIS THURSDAY IS LUPUS LA’S YEARLY ORANGE BALL TO RAISE  FUNDS FOR RESEARCH AND SPREAD AWARENESS . IM AM HAPPY TO ANNOUNCE I AM PART OF THIS EVENT IN SHARING MY STORY AND EXPERIENCES TO HELP OTHER’S .

 

11 vials today and Neurology

Today was a long day …Bare with me my cognitive abilities are making it so I am not able to figure out how to put up images , photos, and links to the site. The treatment for the cerebral vasculitis is usually high dose iv steriods and chemo. I have  alot to still do in terms of tests to get down to a treatment plan for me , it is  challenging for the doctor’s and myself due to my system being hypersensitive and the adverse reactions to many of the drugs used for treatments.

I am  thankfull to find a group of people here that are very kind and open to everyone. After a long stressful day. I got a rest in and for an hour was able to attend this gathering. For me I am happy for one hour vs none.  The daily medical is too much for my brain to process  and it needs a break. They all started at 5pm, to celebrate a birthday , I am happy i showed just to say hi and feel like i am part of something ,

 

 

 

 

What is CNS Lupus?

CNS-fatigue

Lupus is an autoimmune disease that can affect almost any part of your body, including the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).

The nervous system has three parts, any of which may be affected by lupus.

·  The central nervous system (CNS)—The brain and spinal cord.

·  The peripheral nervous system (PNS)—The network of nerves that connects the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.

·  The autonomic nervous system (ANS)—Allows communication between spinal and peripheral nerves and the brain and internal organs, and controls functions like breathing, blood flow, and heart rate.

People with lupus can experience a number of complications when their nervous system is affected. The symptoms may come on suddenly or may come and go, but they will vary depending upon the location and extent of the tissue injury. These symptoms also can be present in other diseases, so diagnosing lupus-related nervous system disorders is often difficult.

Neurologists are physicians who specialize in the nervous system. They may rely on a number of diagnostic tools to determine whether lupus is involved in cognitive problems:

·      Brain scans (MRI and CT)

·      Electroencephalograms (to capture the electrical pattern of brain activity)  ·      Spinal tap (to examine fluid in the spinal column)

·      Behavioral and cognitive tests may also be done to find out if your memory or other mental abilities have been affected.

Depending on the symptoms, a variety of medications are available to treat lupus-related nervous system disorders, including non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your response to treatment may be rapid or gradual over several months. For many people with lupus, nervous system involvement is completely reversible.

Central Nervous System (CNS):

When lupus affects your central nervous system, many symptoms may occur, including:

·      Headaches

·      Confusion

·      Fatigue

·      Depression

·      Seizures

·      Strokes

·      Vision problems

·      Mood swings

·      Difficulty concentrating

·   Lupus Fog or Cognitive Dysfunction

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction, although many people with lupus call it “lupus fog.” Cognitive dysfunction most often affects people with mild to moderately active lupus. The causes of these symptoms, and the reasons the symptoms tend to come and go, are unknown.

Living with cognitive dysfunction can be very frustrating. However, you can learn to improve your concentration and lessen confusion and memory loss with a variety of coping skills, including puzzles, games, biofeedback, using a daily appointment calendar, and balancing daily activities to reduce stress.

Lupus Headache  Compared with the general population, people with lupus may be twice as likely to experience migraine-like lupus headaches, commonly known as lupus headaches. The features of lupus headaches are similar to migraines and may be seen more often in people who also have Raynaud’s phenomenon. However, headaches can also be caused by vasculitis, a symptom of active lupus due to inflammation of the blood vessels.

Medication Side Effects:

Medications used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you should consult a neurologist who can determine which symptoms are side effects of medication and which are due to lupus. The drugs most known for causing symptoms like those of CNS lupus are:

·      Non-steroidal anti-inflammatory drugs (NSAIDs) – May cause headache, dizziness, confusion, and in rare instances, meningitis-like symptoms

·      Antimalarials – Very high doses (not usually given for lupus) may cause manic behavior, seizures, psychosis

·      Corticosteroids – May cause agitation, confusion, mood swings, psychosis, depression 

·      Anti-hypertensive medications – May cause depression or loss of sex drive  

A serious form of lupus called CNS vasculitis may occur when there is inflammation of the blood vessels of the brain. Characterized by high fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS vasculitis is the most dangerous form of lupus involving the nervous system and usually requires hospitalization and high doses of corticosteroids to suppress the inflammation.