A special message from a Messenger

I have never read a book quite like this before. It was beautifully written - a mothers struggle through the life and death of her cherished son. The amount of pain that this family had to endure in such a short time, made me think about my own life. It brought me to tears on countless ocassions, and forced me to re-evaluate my life. So many times, we take advantage of both the people around us, and the situations we have been dealt. However sad this book may seem, it had the absolute adverse effect, it made you hopeful, it showed the true human spirit and how strong we really are. I could not put this book down. When everything was said and done, I completed the book in about 4-5 days. I would definitely recommend this book, not just to mothers, or people suffering from a debilitating illness.. I recommend that everyone take some time out of their day to learn about this little angel, and his message from God.

Treating pain at home

I decided to visit the Library last night, and decided to pick up some books on Arthritis. I looked everywhere for books on Lupus but could find absolutely nothing. No Chapters book store in Canada carried any books on Lupus, it had to be ordered. After searching through these resourceful books, i found a really great tip on how to treat pain at home. I am about to go try it but thought I would share it with all of you and see how it works for you.

Contrast baths

Make sure you start with two large pans, or you can use a kitchen sink in your house. Fill one of the pans and/or sinks with warm water and the other with cold water.

Place your effected joint in the warm water for (10)minutes and then in the cold water for (1)minute. Cycle back and forth between the two sinks or pans. You may continue this process for up to (30)minutes. Make sure you always end with the warm water. *Use warm, not hot, water.*

All of this information can be found in The Mayo Clinic on Arthritis; conquering the pain and leading an active life book.

Review:
*Ok everyone, here it is... drum roll! I did try this, and here is what I think. I think it is an amazing way to relieve pain *temporarily*. The pain in my joints aren't as bad, but it does begin to wear off shortly afterwards. I would reccomend this to people who are in extreme pain, and just want to take the edge off. I don't know that I would rely on it to take away all of the pain*

A Prayer..

Amongst all of the hype and excitement of the 2010 Vancouver Winter Olympics, I would like to extend my deepest sympathies to those who have been affected by the earthquake in Chile. With threats of a Tsunaimi on the coast of Hawaii and British Columbia, I want us all to remember where we came from, and who we are - people who show our support and love when it is needed most.

Foods that Benefit You...

- Fish & Seafood {cold water, oily fish may help reduce inflammation}
- Chicken, turkey, and veal instead of red meat
- Vegetables {lots of dark greens}
- Fruits
- Polyunsaturated Oils
- Wholefoods {whole wheat bread}
- Water

This information may also be found in Readers Digest; Alternative Answers to Arthritis and Rheumatism.

Food Irritants

- Beef, pork, and other red meats
- Wheat, barley, oats and rye
- Sugar, and sweet things
- Fat & fried foods {some fats can have an inflammatory effect}
- Salt
- Caffein
- Dairy produce
- Smoked and prossessed meats
- Alcohol
- Fizzy drinks {can deplete calcium levels}
- Refined carbohydrates
- Additives and perservatives
- Acidic foods {vinegar, citrus foods, and orange juice}
- Chocolate
- Eggs, nuts, seeds, and onions

This information can also be found in Readers Digest; Alternative Answers To Arthritis and Rheumatism.

I am not a medical professional, so, in no way is this meant to be taken as such.. It is just some interesting information that I thought I would share.

Homemade Warming Massage Oil

I found this remedy in a book that I took out from the Library, and I thought I would share it with all of you. I have yet to try it, but once I do, I will let you you all know how it works.

1.) 2 tsp (10ML) soybean oil
2.) 2 drops of wheat germ oil
3.) 3 drops of pimento oil

It's as easy as 1, 2, 3!

This homemade recipe can be found in Readers Digest; Alternative Answers To Arthritis & Rheumatism.

Did you know?

What Causes Lupus?

There are certain factors that may contribute to a Lupus causes which include; viruses, environmental chemicals, and a person's genetic makeup.

Female hormones are also found to play a part in the development of Lupus. This is especially true during a womans child-bearing years, as hormone levels are at their all-time high.

With an observation that 10% of all Lupus patients, have a relative that suffers from the disease, lets us know that there may be a slight tendency of Lupus being an inherited disease. However, this information DOES NOT mean that a diagnosis can be predicted.

Who is affected by Lupus?

Lupus can affect men AND women of any age, or race. (1) in (2000) people in the United States suffers from Lupus. People of African, Asian, and Native American descent are more likely to develop the disease.

If only women of childbearing (14-45 years old), are considered, (1) in (250) may develop Lupus in their lifetime. This suggests that there is a possible role for female hormone levels to influence the vulnerability of the disease.

How is Lupus diagnosed?

The diagnosis of Lupus is best made by an experienced physician who understands Lupus, and the different diseases and conditions that may mimic it. The overall diagnosis is made when a patient has several of the listed symptoms, findings on examination, and blood abnormalities. It is best, that during a Lupus diagnosis, the patient refers to a {Rheumatologist} for confirmation of diagnosis.

How is Lupus treated?

The type of treatment will depend on several different factors, including a persons age, the type of medications they are currently on, their overall health, medical history, as well as location, and the severity of the disease.

Due to the fact that Lupus is a disease that can change over time, and is not always predictable, a critical part of health care is routine appointments with your rheumatologist.

What problems may Lupus patients develop?

Many patients with active Lupus, feel poorly in general and may complain of fever, weight loss, and fatigue. People who suffer from Lupus may also develop specific problems when the immune system attacks a certain organ(s), or other area(s) in the body.


Information found at: www.doctoroz.com

Veggie-full Information

Mr. Oz, the love of my life - where would I be without you? Everyday, at 5:00pm, after Oprah! If you know me, you know that I love Oprah & Doctor Oz. Today, on his show, he discussed certain cancer-fighting foods that could probably help in people suffering from Lupus. A majority of the foods listed are foods that are good anti-inflammatory agents. Suffering from extreme joint pain, swelling, and stiffness, this seems like a pretty good answer to me. I will make a list of the certain foods that you should make sure you pick up at your next grocery store visit!

Vegetables & Fruits

1.) Leafy Greens
2.) Brussel Sprouts
3.) Tomatoes
4.) Beets
5.) Carrots
6.) Sweet Potatoes
7.) Squash
8.) Broccoli
9.) Onions, leeks, shallots
10.) Mushrooms
11.) Lentils
12.) Peppers; bell & jalapeno
13.) Spinach
14.) Oranges
15.) Grapefruit
16.) Lemon
17.) Lime
18.) Apples
19.) Berries; blueberries, strawberries, rasberries
20.) Apricots
21.) Pomegranetes
22.) Mango

Whole Grains

1.) Whole grains (bread, pasta, tortillas)
2.) Oats
3.) Flaxseed
4.) Quinoa

Spices

1.) Cinnamon {contains anti-inflammtory agents}
2.) Garlic {containts anti-inflammatory agents}

Everything seen here, you can get at www.doctoroz.com

Patience.

It takes one person. One person, to make things happen. One person, to leave an impression, and One person, to make you believe. Before today, I didn't think it was possible to have a doctor think that there was a way to solve everything. Until now, I had 2 doctors tell me that they whole heartedly believed that I have Lupus, and a family doctor who knew nothing more about medicine than the common cold. I am so thankful to have waited, remained patient, for that one doctor that confirmed all of my intuitions about my illness. She, too, strongly believes that I suffer from Lupus - 3 down, 1 more to go. I have a doctors appointment with my Rheumatologist in June where I will ultimately find out what it is that has been plaguing me for so long. Obviously, Lupus would be the last thing that I would want to happen, but until you understand what its like to worry, to worry about what has been wrecking havoc on your body for so long, this is a good thing. Finally, it means that I have someone who is listening. Throughout this entire process, I have felt nothing but crazy. Crazy for believing that doctors could help me, crazy that I was even in this boat in the first place, and crazy that this was happening to me. How many wasted days, I have cried myself to sleep, in so much pain. Regardless of how hard this new road will be, I am happy to be taking it - because for once, it means that I am not taking it alone, and that there is actually a road to be taken. As of now, I have had no clear path, just dirt trails.

Today didn't come with all good news. When it rains, it pours. I was told by my endocrinologist today, that she believes I am pre-diabetic. Wait a second, are you kidding me! With all of the other crazy stuff I'm dealing with, DIABETES! Thankfully, we caught it early and I can change things but holy cow. How long has this been going on with doctors just failing to see it. I can't tell you, how many blood tests I have had done, checking my sugars. It really opened my eyes - things have to change. I am living in a cocoon - i need to be set free, i need to fly. There is no worse feeling in the world than knowing that you have no control over what is going to happen to. I feel like someone, decided to plan my life without me. There are certain things I cannot control, like the Lupus BUT there are certain things I can control, like the diabetes. I need to be thankful that things were not worse, they could have been. This blog is not only an outlet towards my Lupus diagnosis but yet a blog towards the trials and tribulations that I call my life. If just one person, learns from my experience, and all of the mistakes I have made in the past regarding my doctors, then it has all been worth it.

I'm not one of those people that like to hide things, and not share my knowledge - I think that is so selfish. Do you remember in high school, there was always that person that continually got 90% on a test but never wanted to help anyone do better, they just rubbed it in your face? Yeah, totally not me. If I can help, I am going to. I should be referred to a Diabetes clinic out of either Credit Valley or Trillium by summer so I will share all my knowledge on weight loss, keeping a healthy body, and most importantly.. keeping a healthy mind. Patience everyone, patience!

Hell, meet Stephanie. Stephanie, meet Hell..

For the first time since 2006, when I couldn't keep a single thing down - i witnessed a little piece of what my life used to be like. I have had my fair share of dealing with this disease, but today, I reached a breaking point. At around 9:30, I experienced the most intense pain, I have felt in a very long time. With my back, and joint pain, already wrecking havoc on my body - the big bad wolf decided to show its face too. Without warning, my head felt like it was exploding, into a million pieces. I could not open my eyes until dark, and any sound made it feel like raser blades being shoved into my brain. I had THE worst migraine, I have had in a very long time. Back when I used to suffer from migraines almost every week, I was quickly put on medication to help. Since then, I have come off of them and have not had one of these migraines, in a very long time. With the littlest sound making me want to be sick, I could not handle it. It took 4 baths, lots of vicks vapor rub on my temples, and many meds later. Finally, some peace and quiet in my brain. I had THE worst day, in years. Not only was I dealing with my "normal" joint and back pain, that I deal with everyday, I was not dealing with raser blades being shoved into my brain. Ugh... what. a. day.

Sorry in advance for the title, it's the only thing I could think of to capture how I was feeling today...

Keywords ✩

✩ A ✩

ACUTE: Of short duration & coming on suddenly
ADRENAL GLANDS : Small organs, located above the kidney, that produce many hormones, including corticosteroids & epinephrine
ALBUMIN: A protein that circulates in the blood & carries materials to cells
ALBUMINURIA: A protein in urine
ALOPECIA: Hair loss
ANAEMIA: A condition resulting from low red blood cell counts
ANALGESIC: A drug that alleviates pain (painkiller)
ANTIBODIES: Special protein substances made by the body's white cells for defense against bacteria & other foreign substances
ANTICARDIOLIPIN ANTIBODY: An antiphospholipid antibody
ANTI-DNA: Antibodies to DNA; seen in half of those with systemic lupus & implies serious disease
ANTI-ENA: Old term for extractable nuclear antibodies, which largely consist of anti-SM & anti-RNP antibodies
ANTIGEN: A substance that stimulates antibody formation;in lupus, this can be a foreign substance or a product of the patient's own body
ANTI-INFLAMMATORY: An agent that counteracts or suppresses inflammation
ANTIMALARIALS: Drugs originally used to treat malaria that are helpful for lupus
ANTINUCLEAR ANTIBODIES (ANA): Proteins in the blood that react with the nuclei of cells. Seen in 96% of those with SLE, in 5% of healthy individuals, & in most patients with autoimmune diseases
A titer of 1:80 or above is usually considered positive
ANTIPHOSPHOLIPID ANTIBODY: Antibodies to a constituent of cell membranes seen in one-third of those with SLE. In the presence of a co-factor, these antibodies can altert clotting & lead to strokes, blood clots, miscarriages, & low platelet counts. Also detected as the lupus anticoagulent
ANTI-RNP: Antibody to ribonucleoprotein. Seen in SLE & mixed connective tissue disease
ANTI-SM: Anti-Smith antibody; found only in lupus
ANTI-SSA: Or the Ro antibody, is associated with Sjogren's syndrome, sun sensitivity, neonatal lupus, & congenital heartblock
ANTI-SSB: Or the La antibody, is almpost always seen with anti-SSA
APHERESIS: Process of removing blood or some component of it from the body.
APOPTOSIS: Programmed cell death
ARTHRAGLIA: Pain in a joint
ARTHRITIS: Inflammation of a joint
ASEPTIC MENINGITIS: Inflammation of the lining of the brain (meninges) that is not due to any infectious agent
AUTOANTIBODY: An antibody to one's own tissues or cells
AUTOIMMUNITY: Allergy to one's own tissue

✩ B ✩

B LYMPHOCYTE or B CELL: A white blood cell that makes Antibodies
BASOPHILS: Make up less than 1% of white blood cells. These specialised cells combat parasitic or fungal invasion, & also play a roll in allergy. Normal range = up to 0.15
BIOPSY: Removal of a bit of tissue for examination under the microscope
BULLOUS LUPUS: Produces fluid-filled blisters or a rash similar to that of chickenpox.
BLOOD UREA NITROGEN (BUN): A product of protein metabolism. When the kidneys fail, the BUN levels rise, as do the levels of uric acid
BURSA: A sac of synovial fluid between tendons, muscles, & bones that promotes easier movement
BUTTERFLY RASH: Reddish facial eruption over the bridge of nose & cheeks, resembling a butterfly in flight. Also known as Malar rash.

✩ C ✩

CARDIAC TAMPONADE: Accumulation of fluid around the heart.
CARTILAGE: Tissue material covering bone
CHILLBLAINS: A term used to describe cold-blisters on or inflammation of the fingers, toes or ears
CHROMOSOMES: Rod-shaped bodies in nucleus of cells containing the genes
CHRONIC: Persisting over a long period of time
CNS: Central Nervous System
COGNITION: Awareness; ability to think methodically
CONNECTIVE TISSUE: The 'glue' that holds muscles, skin & joints together
COMPLEMENT: A group of proteins that, when activated, promote & are consumed during inflammation.
CH50 (Complement, total hemolytic), Normal range=52-128 CAE units
Complement C4, Normal range = 30-60 mg/dl
Complement C3, Normal range = 83-240 mg/dl
COMPLETE BLOOD COUNT (CBC): A blood test that measures the amount of red blood cells, white blood cells, & platelets in the body
CORTICOSTEROID: Any natural anti-inflammatory hormone made by the adrenal cortex; can also be made synthetically
CORTISONE: A synthetic corticosteroid
CREATININE: A waste product of creatine metabolism. There are high levels of creatinine in the blood when the kidneys are not functioning properly
CREST SYNDROME: A form of limited sclerodoma characterised by Calcium deposits under the skin, Raynaud's phenomenon, Esophageal dysfunction, Sclerodactyly or tight skin, & a rash called Telangiectasia
CROSSOVER SYNDROME: An autoimmune process that has features of more than one rheumatic disease(e.g. lupus & scleroderma)
C-REACTIVE PROTEIN (CRP): A blood protein. Raised levels are found in inflammation such as infections
CUTANEOUS: Relating to the skin
CYTOKINE: A group of chemicals that signal cells to perform certain actions

✩ D ✩

DERMATOMYOSITIS: An autoimmune process directed against muscles associated with skin rashes
DISCOID LUPUS: A thick plaquelike rash seen in 20% of those with SLE. If the patient has the rash but not SLE, he or she is said to have cutaneous (discoid) lupus erythematosus
DIURETIC: A drug that helps to make more urine
DNA: Deoxyribonucleic acid. The body's building blocks. A molecule responsible for the production of all the body's proteins

✩ E ✩
ECG (or EKG): Electrocardiogram, a recording of electrical forces from the heart
ELECTRO-RETINOGRAPHY: A sensitive screening test for early abnormalities of the retina of the eye
ENA: Extractable Nuclear Antibody. Blood test that covers Anti-RNP, Anti-Sm, Anti-La, Anti-Ro antibodies.
ENDOCARDITIS: Inflammation of the inner lining of the heart
EOSINOPHILS: White blood cells that make up 0-5% of all white blood cells. Eosinophils are involved in allergic responses.
Normal range = up to 0.5
ERYTHEMA: A reddish hue
ERYTHROCYTES: Red blood cells, which have no nucleus & transport oxygen to the tissues
ESR: Erythrocyte sedimentation rate. The blood test used as a 'barometer' of inflammation. Normal range = male 0-15mm/hour; female 0-20 mm/hour

✩ F ✩
FIBROMYALGIA (FIBROSITIS): A pain amplification syndrome characterised by fatigue, a sleep disorder, & tender points in the soft tissues; can be caused by steroids & mistaken for lupus, although 20% of those with lupus have fibromyalgia
FLARE: Symptoms reappear

✩ G ✩
GENE: The biologic unit of heredity located on a particular chromosome
GLOMERULONEPHRITIS: Inflammation of the glomerulus of the kidney; seen in one-third of patients with lupus

✩ H ✩
HAEMATOCRIT: A measurement of red blood cell levels. Low levels produce anaemia
HAEMATURIA: Red blood cells in the urine
HAEMIPARESIS: Paralysis or weakness on one side of the body
HAEMOGLOBIN: Oxygen-carrying protein of red blood cells. Low levels produce anaemia.
Normal range = 13.2-17.0
HAEMOLYTIC ANEMIA: Anaemia caused by premature destruction of red blood cells due to antibodies to the red blood cell surface
HISTOLOGY: The study of the microscopic structure of tissue
HISTOPATHOLOGY: The study of microscopic changes in diseased tissue

✩ I ✩

IGG (IMMUNOGLOBLIN G): The major antibody of plasma & the most important part of our antibody response. Most autoimmune diseases are characterised by IgG antibodies
IGM: Initially produced to fight antigens but soon decreases & allows IgG to take over. It plays an important but secondary role in autoimmunity
IMMUNE COMPLEX: An antigen & antibody together
IMMUNOSUPPRESIVE: A medication such as cyclophosphamide or azathioprine, which treats lupus by supppressing the immune system
INFLAMMATION: Swelling, heat, & redness resulting from the infiltration of white blood cells into tissues
INTERSTITIAL PNEUMONITIS: Atypical pneumonia due to either a virus or unknown factors
INTRAVENOUS PYELOGRAM (IVP): An x-ray examination of the kidneys

✩ L ✩

LE CELL: Specific cell found in blood specimens of most lupus patients. The LE cell is a white blood cell that has swallowed the nucleus of another white blood cell
LESION: A change in tissue due to injury or disease
LEUKOPENIA: A low white blood cell count.
LIVEDO RETICULARIS: A blotchy purplish discoloration of blood vessels, usually on the wrists and knees
LUPUS ANTICOAGULENT: A means of detecting antiphospholipid antibodies from prolonged clotting times
LUPUS PROFUNDUS: Inflammation of subcutaneous fat
LUPUS VULGARIS: Tuberculosis of the skin; not related to systemic or discoid lupus
LYMPH GLANDS: Glands situated strategically around the body to protect against the spread of infection
LYMPHOCYTE: Type of white blood cell that fights infection & mediates the immune response.
Normal range = 1.20-4.0
LYMPHOPENIA: A decrease in the number of lymphocytes in the blood.

✩ M ✩
MACROPHAGES: Cells that eat antigens, immune complexes, bacteria, & viruses
MIXED CONNECTIVE TISSUE DISEASE: Exists when a patient who carries the anti-RNP antibody has features of more than one autoimmune disease
MONOCYTES: White cells that represent about 5% of circulating blood cells. They are responsible for processing foreign materials (antigens), & the destroying cells & tissue debris that are by products of inflammation.
Normal range = 0.2-1.0
MRI (MAGNETIC RESONANCE IMAGING): The form of scan using magnetism rather than x-rays

10 Things You Should Know...

I found some useful information off of Google, and like always, I thought I would share it.
Enjoy :)!

Fact # 1
Lupus is an autoimmune, rheumatic disease.
In Lupus, the immune system of the body attacks it's own cells and tissue. Specifically, the joints, skin, kidneys, lungs, heart, nervous system, and many other organs of the body are also effected.

Fact # 2
There are (5) types of Lupus
Systemic Lupus Erythematosus (SLE) : effects the joints and organs
Discoid Lupus : Mainly effects the skin
Sub-Acute Cutaneous Lupus Erythematosus : characterized by a non-scarring skin lesion
Neonatal Lupus : effects newborns

Fact # 3
90% of Lupus patients are Women
Lupus affects roughly 10 times as many women as men. Most often, Lupus develops in people 18 to 45 years old. Although Lupus is more prevalent in women, both men and children can also be affected, at any age.

Fact # 4
There are (11) American College of Rheumatology criteria for Lupus
Butterfly shaped rash across bridge of nose and cheeks
Scaly, disk shaped rash
Sunlight sensitivity
Mouth sores, tongue sores, inside nose sores,
Arthritis pains in joints
Pain in chest and side when breathing or moving
Kidney problems
Neurological problems
Blood problems, such as anemia
Immune system malfunction
Antinuclear antibodies

It is recommended that if you suffer from (4) or more of these, you visit a Rheumatologist

Fact # 5
Lupus Diagnosis may be difficult
Lupus is considered an unpredictable disease, with no two cases, exactly the same. The unique pattern of the symptoms, associated with Lupus has caused some to say that Lupus is like a snowflake. No two are alike. There are several symptoms of Lupus which mimic other rheumatic diseases, making the diagnosis process difficult.

Fact # 6
Lupus treatments depend on symptoms and severity of symptoms
Conservative treatment with NSAIDs may be appropriate for Lupus patients with non life-threatening symptoms such as, joint pain, muscle pain, fatigue, and skin rashes. More aggressive treatment which may include high-dose corticosteroids or immuno-suppressive drugs is used when there are severe organ complications.

Fact # 7
Up to 1.5 million people across the nation, may have Lupus
Though the Lupus Foundation of America estimates that 1.5 million Americans have lupus, the Centers for Disease Control and Prevention offer a more conservative estimate of 237,000. Approximately 70 percent of lupus cases are systemic. In 50 percent of those cases, it is a major organ which is affected.

Fact # 8
Certain races have an increased risk of developing Lupus
cording to the Lupus Foundation of America, lupus is two to three times more prevalent among people of color, including African-Americans, Hispanics, Asians, and Native Americans.

Fact # 9
The majority of Lupus patients lead normal lives
With careful monitoring of lupus, and treatment adjustments as needed, most lupus patients lead normal lives. There may be some limitations and the disease may impose restrictions at times but with good disease management quality of life can be sustained. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.

Fact # 10
A rheumatologist is a medical doctor who specializes in treating arthritis and other rheumatic conditions, including lupus.
Your primary care doctor can refer you to a rheumatologist. Evaluation by a rheumatologist is important so that a patient can develop a treatment plan.

Do not use this in substitute for medical advice. If you believe that you, or someone you love suffers from Lupus, please contact your family physician.

This information was taken from: http://arthritis.about.com/od/lupus/a/lupus_facts.htm

Support

Is it completely selfish of me to say that through this entire ordeal, I failed to realize, truly realize that this disease wasn't just effecting me. I always knew that my family had to deal with it, but what I failed to see was that this is as much their disease as it is mine. After a brief argument with someone I love, very much, I was informed about how much this disease was and is effecting my loved ones. For the first time, ever I asked how they were feeling; exhausted, I was told. I guess we have more in common in regards to this disease than I thought

You say Potato, I say Po-tat-o

Interesting finding everyone! I was listening to 105.7, based out of Niagara Falls here in Canada. Like always, the wonderful John Tesh was on with his insightful information. Anywho, he started talking about immune system, so of course, I listened in. Apparently, through research done, sweet potato's are supposed to work wonders for people who suffer from a low immune system. Constantly learning, and wanting to know more about how I can prevent things through this disease, I found this to be very useful information and thought I would share it with all of you.

Eat lots (of healthy stuff) lol, laugh uncontrollably, and

Happy Veggies!

Life, through my eyes...

The sun is bright, it is morning. With a dred that begins to wash over me, knowing that this morning will be no different. With every move that my body makes, my bones crack, that much louder. By now, my body is so stiff, that even the suddenest of movements, will send my body into pure shock, and pain. I try my best, to go slowly, remembering that the faster I try to sit up, the more my bones will crack.

Finally, my feet have touched the floor. Don't get ahead of yourself, Steph - it's not over yet! It has just begun.. Did i break my arm in the middle of the night? No, I couldn't have, who breaks their arm while they sleep? My pain is so horrible and stiff, that it feels as if I have broken something. My first step of the morning, and I am dreding the next to come - I reach to hold onto the side of my chair, then, the side of my door, with my back arched so badly, the thought of standing up straight is making me want to cry. I stay positive, and try everything in my might, not to breakdown and scream. The first few steps are always the hardest, without rhyme or reason - I want to give up.

With the bathroom close in sight, I cannot wait to move on with my morning and try and move past, what I will deal with, again, tomorrow. To most, the toothbrush is nothing to worry about, but to me, it's a weapon. With every ounce of my being, i must brush my teeth, regardless of how badly it hurts. My elbows are cracking, and becoming more and more stiff as I go on. By now, it is time to take my meds, maybe it will eiliviate my pain, even for just a little bit. With every single ounce of my body, aching, i muster up the strength to swollow the bitter taste of my pill. This part of my day, makes me believe that everything will be okay, in just 20 minutes.

What do you rate your pain out of 10? 5 on a good day, 8 on a bad day. I sit at the table, and I can feel my pain, radiate down my back, and into my legs. With the pain, burning so badly, I feel like crying. I don't know what else to do, but go lay on the couch, and wait for this pain to pass. With an electric shock, running right down my spine, even the simplest of movement involving my neck, can make me want to throw up. It is so hard, wondering what life has in store for you. With each minute, different than the next, never knowing what will happen to you, but knowing something will, is so unbelievably hard to handle. Whether I am so tired, from doing absolutely nothing, that I cannot keep my eyes opened for even 5 minutes during the day - daily daytime naps are needed. If I don't take an hour for myself to nap, I am done, for the rest of the day.

By night time, I am so wiped out, that even sleeping is hard. Have you ever been so tired, and drained, that falling asleep is a chore? With my mind in a fog, sleep can sometimes be a struggle - an unwanted struggle. My constant forgetfullness, of words, of actions, and my last name? Yes, I said my last name. It is certainly tough, but I am getting by. By the time the sky has turned dark, and the sun has gone asleep for the night - I am lying in bed, with fingers so swollen they are the size of sausages, unable to wear my rings. Knuckles, so swollen and inflammed that they have now turned red, and are hotter then ever. With my 2nd med of the day, my horrific pains are beginning to show their face. I tuck my body into a fetal position, hoping, praying, that this too... shall pass. With my back so stiff, and in pain, even the thought of standing up, is not concievable. With rashes the size of a football on my leg, little red broken blood vessels all over my body, and purple broken blood vessels under the skin, it has become apparent that my body is no longer what it used to be. I am sometimes ashamed, and hold guilt, of how different my body has changed, but I keep in mind, that one day, things wont always be so hard, and I will learn to accept the disease that is staring at me, face to face. With my ability to drive a car, almost none-existant, again - my independence has yet again, been taken away.

I can feel my nerves, pulsating beneath my skin. With my body in full blown twitching mode, I can't help but wonder if anyone is looking. My stomach, my face, my arms - every nerve imaginable in my body - twitching. Each day is different, and I am learning to work with my disease, not against it. I am not here to complain, but rather, to show all of you, what a day in the life of someone living with this disease is like.

How do I deal with this all, you might ask? I just, do.

Looking for an outlet

This whole thing is so unbelievably hard. If I had one piece of advice for someone going through this, it would be to find an outlet. Even with that, the stuff you are forced to go through is sometimes more than you can physically and emotionally bare. I started off my last blog post, with every intention of finishing it, little did I know.. life had other plans. Most days, the pain, and the symptoms take over me, control me. As much as I try to tell myself that I have this disease, this disease doesn't have me.. I end up right back where i started - in bed, throwing in the towel.

I shouldn't be so harsh - this doesn't always happen, but it happens enough. The pain through sitting is sometimes more than I can handle. It's strange you know, as much as I want the people around me to understand what I am going through, I would never want anyone, to go through what I go through on a daily basis. This disease, it's like a prison. You are a prisoner in your own body, in your own soul. When you want to run, and break free - you are left stuck, with nothing but the pain you feel, always. How does someone live like this, forever? I am only 21 years old and I am already struggling. I realize that I am not yet diagnosed and that this is only the beginning but boy, let me tell you.. this is one ride, I would like to get off of. I've been thinking lately, I would like to pain a picture for those people who don't quite understand what we go through. Not an artistic picture, but a creative-writing picture. Maybe then, people will grow to understand all of the things we give up, and the things we give for. This disease is a real give and take. What a relationship!

God, help me, for I am weak
God, help me, for I am scared
God, help me, for I hurt ...so...so... much.

I am having a rough night tonight.

Smiles... eventually fade

Based on the title to this blog, i think it's pretty safe to say that I have had a strange day. Outside of having to work tomorrow morning at 8:00am, for some reason, I can't seem to sleep. With the world around me dreaming, I am sitting on the computer chair in the computer room, wondering when I am going to catch some shut eye.

I had to make 2 calls today; one to my family doctor for a prescription refill, and one to my gynecologist for a requisition and an endocrinology date. Being the stupid person that I am, I decided to look up my new doctor on the internet at ratemd.com - such a bad idea! Apparently, I have been sent to the world worst doctor on planet earth. I have no idea why I do this to myself! Not only am I freaking out about this doctor that I have been referred to, I'm wondering if I should ask to be changed to someone else. I know, I know - you should never judge a book by it's cover but c'mon! This doctor was rated 1.3 out of 5.. I have never come across a doctor rated that poorly. My main focus right now is getting this auto-immune nonsense under control so I guess at the end of the day, it really shouldn't matter.. I just hate dealing with weirdo doctors, and believe me.. I have come across my fair share! My cardiologist and my gynecologist believe that my family doctor should have sent me to a rheumatologist ages ago. What can you do when you have a doctor who is completely old school. No offense to her at all, she is a really great doctor and has stuck by me for most of my life.. I just think there comes a point where you really need to say to yourself, this is beyond what I specialize in and send me on my way to a doctor that knows. How many inaccurate comments she has made over the years, that both of my doctors have told me are false.

At this point, as much as I want to smile and believe that everything will turn out okay - that these doctors will figure out what is wrong with me; a part of me is really scared that this isn't something that can be figured out on one visit. I have talked to men and women from all over that claim it took years for them to be diagnosed. There is no clear-cut test that says yes you have it, or no you don't.. it takes years to formulate an opinion - and so it should! This is my life we're talking about after all... it's just irritating sometimes when all you want are answers and no one has definitive ones. My joints are, yet again, keeping me up.. reading, will have to do for now!

I hope everyone had a happy and healthy weekend!

Welcome :)

Hi everyone! It is super bowl Sunday and I am so excited! I'm not a big football fan but I think it's fun.. especially the half-time show. GO SAINTS! This is the beginning of my new blog. I hope you all come and visit often, and be sure to share your stories, and struggles with all of this. I will be keeping a video blog/ aka. "vlog" about my struggles, and my triumphs through coming to terms with a possible Lupus diagnosis. By no means, is this blog any substitute for medical advice, but it's a place for lupus sufferers to turn. If you have questions, let me know.. and I will try to answer all your questions on video. Health and happiness to all xo