Friday, February 26, 2010
My Rheumy Appt went well. I will be starting Enbrel, but there are some tests I have to take first. So i got more blood drawn yesterday to make sure I don't have Hep, and then Monday I have an appt to test for TB, after that's finished and my primary care docter faxes my rheumy the results I have to call him and let him know it's done so we can put in to get me started on Enbrel. I'm excited. He said he planned on taking me off pred but since I was in a lot of pain he decided to keep me on it a little longer until i can start Enbrel and he also gave me a prescription for a pain killer, the cool thing about them is that they are hot pink!! I posted a picture :) so i just have to take it as needed. I got copies of recent blood work & doctor notes that I am going to start asking for every time, so I'm going to get a file system going on to keep track of everything.
In other new; I got a new phone the day before yesterday! The HTC Droid Eris for verizon, I was ready for an upgrade and decided to stay with verizon. I love it! My first day of creative writing class was monday and that went well! & on tuesday I went to disneyland!!! & the good thing? I wasn't sore that day! I had so much fun!!! Here are a few pictures :) I love that I have a annual pass and can go whenever!
Yes i love love love alice in wonderland!! & was super excited that they finally have merchandise you can buy now since the moving is coming out! :) Anyways it was lots of fun and my feet didn't start hurting until the end, the weather was nice too! Good times :)
Friday, February 19, 2010
Thursday, February 18, 2010
Monday, February 15, 2010
I've always felt like my life was a book. *cue music here* I told myself for many years that I'd love to have someone put my life onto paper. As times passes the urge to have it get done only becomes stronger as I continue to face challenging life events. I'm not the best when it comes to writing but I've thought about doing it myself. I just know I wouldn't be able to sit for hours on end writing nor do I even know the slightest bit about writing a book.
From losing a mother, heartbreak, a car accident, struggling with school, thinking I found love again, & more heartbreak, & becoming diagnosed with a chronic pain disease. It would seem to one that my unfortunate events never seem to fail me... of course with one there always comes another. I've had my fair share of happiness mixed into the despair. I think I've experienced what one would call "hitting rock bottom" but this ceases when a bigger event seems to come my way. Yet here I am, still breathing, still living and trying to conquer everything that gets thrown in my direction, one hit after the next. I like people to believe I'm strong, but sometimes I get tired of pretending to be. What's wrong with letting it all out and crying? I get people asking me "how are you?" a lot lately & quiet honestly I just want to scream I'm horrible, terrible, no... I'm in absolute disbelief on why bad things have to happen to really good people. Is this the depression starting to take over? I don't know whether to feel anger, sadness, disappointment or maybe all three. Can't I just crawl in a hole for awhile & stay there? I'm not asking for forever, I'm just asking for awhile, or at least until I know I can stand up and fight back. Don't get me wrong, I have friends & I have a Dad, & even a fantastic step mom, I have an "almost" significant other If I can call her that who's been here through it all over the past 7 years. Yet here I am, still afraid more then ever of what's to come next.
What is it that's missing?
I went to the cemetery a few days ago & told my mom I have RA. Is that silly? I always wonder what things would be like if she were still here. I miss her. I keep struggling to find the strength inside of myself. I'm not dieing right? At least it's something that won't kill me? Is that it? How is that supposed to make me feel better? It doesn't, I mean It makes me laugh thinking about RA in that way, As if I'd rather suffer from this insane pain I get, these stupid "flares". I didn't ask for this, any of it. I can only pray for a cure one day, or wait patiently for that one medication that will help me get my life back on track. I want my happy ending, I want to reach the light at the end of this long tunnel.
She's losing her mind, she's fallen behind
And she can't find her place, she's losing her faith
She's fallen from grace, she's all over the place, yeah"
Friday, February 12, 2010
My feet have been more sore then usual with working longer shifts over the past few days. I got my taxes back today and invested in something for myself before the rest goes towards bills, the sony digital pocket reader! I love it already :) the design is great & it suits my needs perfectly. I already have 10 books on it. Some I downloaded for free & some I paid for. =] I got a fantastic deal at my work (Target) so I couldn't pass it up. I figure it'll come in handy on those days that I'm feel icky and laying in bed for hours. It's so light weight and much nicer then holding books in my hands. I have The Winter Olympics on tv right now, the opening ceremony so far is so pretty! I've never seen an opening ceremony before. I'm so glad I have tomorrow off and can sleep in as much as I want! I hope I get some Enbrel information in the mail tomorrow. My wrist are starting to get sore so this will be a short entry!
Wednesday, February 10, 2010
I'm counting down the days until I see my Rheumy on the 24th this month. I've been so sore lately & the cold weather off and on hasn't been helping. I've been sleeping in bed a lot this past week I think I got about 11 hours of sleep today and that still doesn't feel like enough! I still feel exhausted but I have to work 5:15p-10p tonight & be up early tomorrow again for work at 8am. I'm not off until saturday. I do have FMLA now for work so if I feel like I really can't I can call out without a problem but I really need the money so that's something I have to try not to do :( But the FMLA allows me to miss up to 7 days a month because that's what I estimated I'd need tops for now for up to 8 hour shifts. This protects me from getting fired for calling off to much or if I need to leave work early.
I've been reading lots of Blogs lately about other people who have RA, so many interesting and helpful entries I've found on RA Warrior (dot) com I even order a book called What to Do When the Doctor Says Its Rheumatoid Arthritis, by Harry D Fischer, MD and Winnie Yu. Found here so I'm looking forward to receiving that in the mail.
Monday, February 8, 2010
What is it?
Sjögren’s (SHOW-grens) syndrome is an autoimmune disease that primarily affects moisture-producing glands. The damage caused to these glands leaves you with dry eyes and mouth. Other parts of the body (such as the skin, respiratory system, nerves, thyroid glands and digestive tract) can be affected by the inflammation as well.
In this disease, the body’s immune system mistakenly sends its disease-fighting cells to attack the lacrimal and salivary glands, which produce tears and saliva, respectively. Rather than protecting the body as it is intended to do, the immune system damages these glands causing dry eyes (called keratoconjunctivitis sicca) and dry mouth (xerostomia).
Sjögren’s syndrome can occur in two forms:
- Primary occurs alone and is not associated with any other disease.
- Secondary occurs with rheumatic diseases such as polymyositis, rheumatoid arthritis, scleroderma and systemic lupus erythematosus.
Scientists think that Sjögren’s syndrome is caused by a combination of genetic and environmental factors. Several different genes seem to be involved, but simply having one of these genes will not cause you to develop the disease. Some environmental trigger must activate the immune system. Researchers think that the trigger may be a viral or bacterial infection. Because most people with Sjögren’s syndrome are women, it is thought that hormonal factors play some role in the disease’s initiation.
What are the effects?
Along with the main symptoms of dry eye and dry mouth, several other parts of the body can be affected by Sjögren’s syndrome.
- Eyes: Your eyes may burn and feel dry, gritty and itchy. They may appear red and can be sensitive to bright lights. Having dry eyes makes you more prone to getting eye infections.
- Mouth: Your mouth will feel dry, and you may have difficulty swallowing and speaking. Your sense of taste and smell may be altered. Because you are lacking natural saliva, which contains substances that fight bacteria and cleanse the mouth, you are susceptible to cavities and mouth infections. The fungal infection candidiasis (oral thrush) is particularly common among people with Sjögren’s syndrome and causes redness, burning and a white film in the mouth.
- Energy: Sjögren’s syndrome can cause extreme fatigue that can interfere with your daily life.
- Salivary glands: The saliva-producing glands located under your tongue, in front of your ears and near the jawline may become swollen and sometimes tender.
- Nose and throat: A dry nose and throat can cause a tickly feeling and persistent cough, leading to irritation and hoarseness.
- Skin: About half of people with Sjögren’s have dry skin. The skin may only itch, or it may also become so dry that it cracks and splits. Skin that is split or has been vigorously scratched is prone to infection. Some people with Sjögren’s (particularly when it is secondary to lupus) are sensitive to sunlight and can get sunburn from minor exposure.
- Vagina: Vaginal dryness is common in women with Sjögren’s syndrome. Painful intercourse is the most common complaint.
- Lungs: Pneumonia can be a complication of dry mouth when food becomes aspirated when swallowing is difficult or bacteria from the dry mouth can migrate to the lungs. The disease itself can cause inflammation of the bronchial tubes, windpipe and voice box.
- Kidneys: Some people with Sjögren’s syndrome have a diminished ability to concentrate urine. People may have distal renal tubular acidosis, which gives people acidic urine and can lead to calcium loss from bones. Parts of the kidney’s filtering system can be affected by this autoimmune disease, causing inflammation around the kidney’s filters (interstitial nephritis) or in the filters themselves (glomerulonephritis).
- Nerves: Peripheral nervous system involvement can cause carpal tunnel syndrome, peripheral neuropathy or cranial neuropathy. Carpal tunnel syndrome causes pain, numbness and tingling in the thumb and index and middle fingers. Peripheral neuropathy causes similar symptoms in the legs or arms. Cranial neuropathy causes face pain; loss of feeling in the face, tongue, eyes, ears or throat; and loss of taste and smell. Rarely, Sjögren’s syndrome can affect the brain and cause stroke-like symptoms.
- Digestive system: Inflammation in the esophagus, stomach, pancreas, and liver can cause painful swallowing, heartburn, abdominal pain and swelling, loss of appetite, diarrhea and weight loss. It can also cause hepatitis (inflammation of the liver) or cirrhosis (hardening of the liver).
- Connective tissues: The connective tissues of the body include the joints, muscles, bones, skin, blood vessel walls and lining of internal organs. Sjögren’s syndrome could affect any one of these on its own. In addition, several autoimmune disorders that effect the connective tissues are associated with Sjögren’s syndrome, including:
- Raynaud’s phenomenon
- Rheumatoid arthritis
- Systemic lupus erythematosus
- Thyroid disorders: Grave’s disease (overactive thyroid) or Hashimoto’s thyroiditis (underactive thyroid)
- Lymph nodes: About five percent of people with Sjögren’s develop lymphoma (cancer of the lymph nodes). Lymphoma occurring in patients with Sjögren’s syndrome often involves the salivary glands.
The main goals of treatment for Sjögren’s syndrome are to alleviate the symptoms of dry eyes and dry mouth. If other parts of your body are affected, your doctor will add other therapies as needed. One general tip for anyone with Sjögren’s syndrome is to check with your doctor to be sure that none of the medications you take for any other problems could be contributing to your dryness. You may not be able to stop taking the medication, but perhaps some other formulation will be available.
Dry eye treatments
- Artificial tears: These are available in different thicknesses, some with preservatives and some without. Preservatives may irritate the eyes.
- Eye ointments: These are thicker and longer lasting than artificial tears. Most people use them only at night as they may blur your vision.
- Hydroxypropyl methylcellulose (Lacriserts): You place these small pellets in your lower eyelid; when artificial tears are added, a film covers the eye that traps in moisture.
- Cyclosporine emulsion drops (Restasis): These drops deliver the immunosuppressant cyclosporine directly to the eye. It is thought that using this drug causes the immune reaction in the tear gland to be suppressed, resulting in increased tear production.
- Punctal plugs: Either collagen or silicone plugs are inserted into the tear ducts to prevent what tears you have from being drained away.
- Punctal occlusion: If punctal plugs work for you, the tear ducts can be surgically closed permanently.
Dry mouth treatments
- Sugar-free gum and candy: If your salivary glands are still making some saliva, you can stimulate production by chewing gum or sucking on hard candies. Be sure they are sugar-free so that you don’t contribute to cavities.
- Sips of water: Take small sips of water or other sugar-free drink throughout the day.
- Lip balm: Oil- or petroleum-based balm or lipstick can soothe dry, chapped lips.
- Saliva substitutes: Gel-based substitutes give the longest relief. Some contain fluoride, which will help prevent cavities.
- Salivary gland stimulants: Pilocarpine (Salagen) and cevimeline (Evoxac) are two medications that can stimulate the glands to produce saliva.
- Antifungals: Candidiasis (oral thrush) is a common infection in people with Sjögren’s. Antifungal medications, such as nystatin or clotrimazole, are available to treat the infection.
- Moisturizing creams: Heavy moisturizing creams and ointments should be applied three or four times per day to trap moisture in the skin.
- Sunscreen: If you are sensitive to sunlight, wear a minimum of SPF 15 sunscreen every day.
- Moisturizer: Vaginal moisturizers attract liquid to dry tissues and can be used every day.
- Lubricant: Vaginal lubricants are used only to make intercourse more comfortable, they do not moisturize.
- Skin creams: Regular skin creams and ointments can be used on the vulva (outer surfaces of the genital region).
- Estrogen: Vaginal estrogen creams may be beneficial for postmenopausal women.
- Antibiotics: Pneumonia is treated with antibiotics; your doctor will choose the appropriate one.
- Humidifier: Placing a humidifier in the rooms you use the most can alleviate bronchial irritation and inflammation.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to relieve inflammation within the lungs.
Most kidney problems will not need treatment unless kidney function is affected.
- Alakaline preparations: Renal tubular acidosis is treated with oral alkaline medications that contain sodium and potassium to correct the body’s acid-base balance.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to treat inflammation within the kidneys.
- Immunosuppressants: Immunosuppressants (such as hydroxychloroquine [Plaquenil], methotrexate [Rheumatrex], and cyclophosphamide [Cytoxan]) may be needed to inhibit the immune reaction occurring within the kidneys.
Nervous system treatments
- Pain medication: Pain relievers, such as acetaminophen (Tylenol, etc.) and nonsteroidal anti-inflammatory drugs (aspirin, ibuprofen, etc.) can be used to control the pain caused by carpal tunnel syndrome, peripheral neuropathy or cranial neuropathy.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to treat the inflamed tissues.
- Immunosuppressants: Immunosuppressants (such as hydroxychloroquine [Plaquenil], methotrexate [Rheumatrex] and cyclophosphamide [Cytoxan]) may be needed to inhibit the immune reaction occurring within the body.
Digestive system treatments
Treatment varies depending on the digestive problems you have, but may include the same as those used to treat the nervous system.
Connective tissue treatments
The connective tissue diseases [link] associated with Sjögren’s syndrome are treated as they would be if they were occurring by themselves.
What is it?
Rheumatoid arthritis (rue-ma-TOYD arth-write-tis) is a chronic disease, mainly characterized by inflammation of the lining, or synovium, of the joints. It can lead to long-term joint damage, resulting in chronic pain, loss of function and disability.
Rheumatoid arthritis (RA) progresses in three stages. The first stage is the swelling of the synovial lining, causing pain, warmth, stiffness, redness and swelling around the joint. Second is the rapid division and growth of cells, or pannus, which causes the synovium to thicken. In the third stage, the inflamed cells release enzymes that may digest bone and cartilage, often causing the involved joint to lose its shape and alignment, more pain, and loss of movement.
Because it is a chronic disease, RA continues indefinitely and may not go away. Frequent flares in disease activity can occur. RA is a systemic disease, which means it can affect other organs in the body. Early diagnosis and treatment of RA is critical if you want to continue living a productive lifestyle. Studies have shown that early aggressive treatment of RA can limit joint damage, which in turn limits loss of movement, decreased ability to work, higher medical costs and potential surgery.
RA affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.
What causes it?
The exact cause of RA currently is unknown. In fact, there probably isn’t an exact cause for RA. Researchers now are debating whether RA is one disease or several different diseases with common features.
We do know that the body’s immune system plays an important role in rheumatoid arthritis. In fact, RA is referred to as an autoimmune disease because people with RA have an abnormal immune system response.
In a healthy immune system, white blood cells produce antibodies that protect the body against foreign substances. People who have RA have an immune system that mistakes the body’s healthy tissue for a foreign invader and attacks it.
One example of this miscommunication in the body is known as rheumatoid factor. Rheumatoid factor is an antibody that is directed to regulate normal antibodies made by the body. It works well in people with small quantities of rheumatoid factor. People with high levels of rheumatoid factor, however, may have a malfunctioning immune system. This is why your doctor often will request a test measuring rheumatoid factor when trying to diagnose RA. In general, the higher the level of rheumatoid factor present in the body, the more severe the disease activity is.
It is important to note that not all people with RA have an elevated rheumatoid factor and not all people with an elevated rheumatoid factor have RA. The test also can come out negative if it is done too early in the course of the disease. Approximately 20 percent of people with RA will have a negative rheumatoid factor test and some people who don’t have RA will test positive.
Learn more about the immune system.
Women get rheumatoid arthritis two to three times more often then men and their RA typically goes into remission when they get pregnant. Women develop RA more often than expected in the year after pregnancy and symptoms can increase after a baby is born. These facts lead researchers to believe that gender might play a role in the development and progression of RA. Many are trying to understand the effects female hormones might have in the development of RA. Currently, there are limited answers to these questions. For more information on pregnancy and arthritis, see Pregnancy Prognoisis.
Most researchers believe there are genes involved in the cause of RA. The specific genetic marker associated with RA, HLA-DR4, is found in more than two-thirds of Caucasians with RA while it is only found in 20 percent of the general population. While people with this marker have an increased risk of developing RA, it is not a diagnostic tool. Many people who have the marker either don’t have or will never get RA. While this marker can be passed from parent to child, it is not definite that if you have RA, your child will too. Learn more about genetics and RA.
Some physicians and scientists believe that RA is triggered by a kind of infection. There is currently no proof of this. Rheumatoid arthritis is not contagious, although it is possible that a germ to which almost everyone is exposed may cause an abnormal reaction from the immune system in people who already carry a susceptibility for RA.
What are the effects?
Rheumatoid arthritis can start in any joint, but it most commonly begins in the smaller joints of the fingers, hands and wrists. Joint involvement is usually symmetrical, meaning that if a joint hurts on the left hand, the same joint will hurt on the right hand. In general, more joint erosion indicates more severe disease activity.
Other common physical symptoms include:
- Stiffness, particularly in the morning and when sitting for long periods of time. Typically, the longer the morning stiffness lasts, the more active your disease is.
- Flu-like symptoms, including a low-grade fever
- Pain associated with prolonged sitting
- The occurrence of flares of disease activity followed by remission or disease inactivity
- Rheumatoid nodules, or lumps of tissue under the skin, appear in about one-fifth of people with RA. Typically found on the elbows, they can indicate more severe disease activity.
- Muscle pain
- Loss of appetite, depression, weight loss, anemia, cold and/or sweaty hands and feet
- Involvement of the glands around the eyes and mouth, causing decreased production of tears and saliva (Sjögren’s syndrome)
Advanced changes to look out for include damage to cartilage, tendons, ligaments and bone, which causes deformity and instability in the joints. The damage can lead to limited range of motion, resulting in daily tasks (grasping a fork, combing hair, buttoning a shirt) becoming more difficult. You also may see skin ulcers and a general decline in health. People with severe RA are more susceptible to infection.
The effects of rheumatoid arthritis can vary from person to person. In fact, there is some growing belief that RA isn’t one disease, but it may be several different diseases that share commonalities.
The proper medication regimen is important in controlling your RA. You must help your doctor determine the best combination for you. The main categories of drugs used to treat RA are:
- Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) – These drugs are used to reduce inflammation and relieve pain. These are medications such as aspirin, ibuprofen, indomethacin and COX-2 inhibitors such as valdecoxib and celecoxib.
- Analgesic Drugs – These drugs relieve pain, but don’t necessarily have an effect on inflammation. Examples of these medications are acetaminophen, propoxyphene, mepeidine and morphine.
- Glucocorticoids or Prednisone – These are prescribed in low maintenance doses to slow joint damage caused by inflammation.
- Disease Modifying Antirheumatic Drugs (DMARDs) – These are used with NSAIDs and/or prednisone to slow joint destruction caused by RA over time. Examples of these drugs are methotrexate, injectable gold, penicillamine, azathioprine, chloroquine, hydroxychloroquine, sulfasalazine and oral gold.
- Biologic Response Modifiers – These drugs directly modify the immune system by inhibiting proteins called cytokines, which contribute to inflammation. Examples of these are abatacept, etanercept, infliximab, adaliumumab and anakinra.
- Protein-A Immuoadsorption Therapy – This is not a drug, but a therapy that filters your blood to remove antibodies and immune complexes that promote inflammation.
& a video that explains what RA does:
Anyone who happens to read this and is currently on Enbrel please leave some feedback on how it's working out for you!
I've recently been talking to 2 girls around my age who also have RA so it's nice to have someone to connect with and share experiences and tips with while I deal with this disease. I hope that they will turn into friendships. I wish there were more support groups in my area. So far I've found one but most of the meetings they have been having are about an hour drive. I do plan on going to at least one cause it'd be nice to talk to some people in person. & on the meetup website they seem very welcoming!
My Appt with my Rheumy is coming up soon, Feb 24th, & on the same day I'll get my blood drawn again. I plan on asking him more questions. Maybe he will know some support groups in my area, I also want to know more about biological medications & I'm looking forward to getting off Prednisone. I've still be sore every now and then but he said it would take a few months before the Methotrexate kicks in which is why I'm still on Prednisone.
My depression is off and on lately, just trying to deal with life. Some days are better then others & I cling to the people/things that do make me happy. It's what keeps me sane really. I've been spending more time with friends & I think it's been helping a lot. So that's good at least. I'm not asking for things to get better, I just want it to all be stable.
Thursday, February 4, 2010
You may have just heard the news of me being diagnosed with rheumatoid arthritis, and while I know you feel the need to comfort me, please give me some space. Right now I just need time to process what I have just been told. Right now I can’t even get my own thoughts straight, let alone explain this disease to you. I just need some time.
You may see the look of pure terror on my face or see it in my eyes. Right now I AM terrified. If you feel the need to comfort me please don’t say things like “it’s going to be alright,” because, to me, it isn’t. I have just been told that I will live the rest of my life with a painful, crippling, incurable disease. That’s not alright. I have just been told that the plans I have made for my future may never happen. I’m not alright.
I have just been told that my family is destined to see me, at times, unable to walk or feed myself. You’re not alright. Everything is NOT alright. Please do not tell me right now that I have to fight this disease. While it may be the best thing you can say, I cannot, at this time, begin to wrap my head around how to fight this awful, incurable disease. Right now I do not feel strong enough to fight. I feel beat down and kicked around by this disease. Right now I feel so weak, so please just give me time to build up my strength.
Please understand my depression. I know this will be difficult for you, but you must understand that in just a few words spoken by my doctor my life has changed forever. There may be many days that I just want to lay in bed and cry. Please don’t worry about me, I am just mourning that life I had expected to live. And I’m so tired, as this has all been too much for me as well. Besides, the tears make me stronger and more able to fight.
I want you to know that I am not mad or angry at you in any way, and apologize in advance if I have harsh words. Right now I resent being sick and I may even resent that fact that you are healthy. Please don’t take this personally, as I am learning how to deal with these new feelings. You may think that I am a bit too bitter, but please understand that watching people get up and about while worrying if I will even be able to make it out of bed in the morning, or take a shower, or brush my teeth by myself does make a person a tad bit bitter."