TIPS PENTING BAGI ODAGRENS

Translator : Ika Fitriyana
Sumber : Sjogren’s Syndrome Foundation https://www.sjogrens.org

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Berikut adalah tips penting untuk penyintas Sjogren’s Syndrome (SS):

Tips Umum:

• Penting untuk menemukan dokter yang ahli dibidangnya dan juga pendengar yang baik.
• Ketika mencari informasi mengenai SS, pastikan sumbernya terpercaya, terbaru, dan mempunyai informasi bermutu.
• Identifikasi faktor utama penyebab stress di hidup melalui bantuan professional khusus mental atau lingkungan pendukung untuk meminimalisir pemicunya.
• Hanya karena OTC (Over The Conter/Obat Tanpa Resep) natural , tidak berarti itu aman untuk Anda. Selalu diskusikan tentang obat-obatan dengan dokter Anda.
• Panjang umur berkaitan erat dengan suksesnya mengatur pola hidup meski memiliki penyakit kronis seperti SS bukan karena ketiadaan penyakit kronis.
• Jika kamu memiliki SS dan bekerja, mintalah akomodasi yang tepat dikarenakan kondisi medis Anda.
• Selalu konsumsi obat NSAIDs (non-steroidal anti-inflammatory drugs) dengan makanan atau susu untuk menghindari sakit perut.
• Jangan pernah merasa bersalah untuk mencari opsi kedua, terutama jika tidak yakin dengan diagnosis.
• Tidak ada orang yang berencana untuk memiliki penyakit kronis, namun itu adalah takdir. Begitu terdiagnosis, hiduplah sebaik mungkin.
• Jika Anda mengalami emosi yang naik turun dikarenakan SS, ikutilah grup pendukung atau berbicaralah kepada pihak professional. Anda akan merasa lebih baik karena Anda tidak sendiri dan Anda akan menemukan jalan paling baik untuk hidup bersama penyakit ini.
• Dengarkan badan Anda. Jangan membebani diri Anda dengan hal-hal yang tidak dapat Anda lakukan. Jika muncul gejala dan bertambah parah, segera hubungi dokter Anda.
• Temukan dokter yang dapat mengoordinir semua kebutuhan Anda sebagai penyintas SS. Biasanya adalah dokter spesialis rematologi, namun dokter keluarga dan umum juga dapat membantu.
• Menjadi partisipan yang aktif ketika diskusi penentuan cara penyembuhan. Anda akan merasa memiliki kontrol terhadap penyakit, mengurangi kecemasan, dan yakin terhadap pengobatan yang dijalani.
• Anda dapat menjalani hidup yang baik dengan SS. Dapatkan informasi sebanyak-banyaknya mengenai SS, mencari dukungan, dan memperhatikan batasan Anda.
• Pastikan dokter Anda tahu mengenai semua jenis obat dan OTC yang Anda konsumsi. Banyak obat memiliki efek samping yang membuat penderita semakin buruk.
• Patut diingat, meskipun gejala tidak dapat dilihat dengan mudah, namun gejala tetap harus diperhatikan. Jika gejala Anda tidak dihiraukan dengan baik oleh dokter Anda, cari alternatif dokter lain.
• Jika penasaran mengenai produk apa saja yang boleh digunakan untuk mata kering, mulut kering, kulit kering, vagina kering, proteksi matahari, asam lambung dan sakit sara, Silakan Tanya SSF untuk jenis-jenis produknya.
• Cari hubungan yang positif dengan hidup Anda. Ini adalah cara terbaik untuk mengatasi kecemasan.

 

Tips Menghadapi Mulut Kering

• Makan makanan yang lembut jika memiliki kesulitan menelan atau gigi rusak.
• Makan sedikit namun sering untuk menstimulasi air liur.
• Hindari makanan yang asam, pedas, dan asin serta minuman yang bersoda.
• Hindari kerusakan gigi dengan merawat gigi dengan produk yang mengandung pemanis xylitol.
• Sering-seringlah minum setiap hari. Sedikit namun sering.
• Hindari pembersih mulut yang mengandung alkohol.
• Kunyah permen karet tanpa gula atau isap permen tanpa gula untuk menambah air liur.
• Gunakan minyak vitamin E atau gel pelembab untuk mulut dan lidah.

 

Tips Menghadapi Mata Kering

• Gunakan pembersih kelopak mata atau sampo bayi yang steril pada kain yang hangat untuk membantu kondisi blepharitis yaitu peradangan kronis pada kelopak mata dan garis mata. Dapat juga mengompres kelopak mata dengan air hangat. Jika kondisi tidak kunjung membaik, dapat meminta obat antibiotik pada dokter, menggunakan kacamata, atau lensa dengan filter FL-41.
• Jangan lupa membawa kain lap hangat di tas ketika berpergian.
• Hindari penggunaan produk apapun di kelopak mata yang dapat mengiritasi.
• Hati-hati dalam membersihkan kelopak mata dengan air hangat ataupun produk kecantikan.
• Gunakan air mata buatan tanpa pengawet secara berkala meski mata dalam keadaan baik. Fungsinya adalah untuk membuat mata nyaman selalu.
• Jangan gunakan produk kecantikan pada bagian atas dan bawah mata ketika tidur.
• Mata kering dapat menyebabkan alergi terhadap lingkungan. Gunakan tetes mata alergi yang dijual bebas dapat digunakan dua kali sehari meskipun terdapat bahan pengawet jika diperlukan.
• Gel mata dapat dipergunakan ketika tidur. Cobalah untuk menggunakannya terlebih dahulu dibagian kelopak dan bulu mata. Jika tidak membantu, gunakan di bagian bawah dan bola mata.
• Gel mata dapat membuat pandangan kabur sehingga disarankan digunakan saat malam hari.
• Untuk mata kering, gunakan lap air hangat pada mata tertutup. Gunakan ketika mau tidur atau sesering mungkin.
• Jika pandangan kabur karena air mata buatan, coba kurangi tetesan atau ketebalan gel. Gunakan kacamata pelembab, kacamata tertutup, atau jenis kacamata yang dapat mengurangi kelembaban dan dapat memberikan perlindungan dari udara.

 

Tips Menghadapi Kulit Kering

• Jangan mandi terlalu lama, gunakan air hangat, bukan air panasl.
• Keringkan tubuh dan segera melembabkan kulit setelah mandi.
• Anda dapat menggunakan petroleum jelly, minyak mandi, atau minyak masak seperti minyak zaitun atau minyak canola.
• Gunakan produk pelembab yang mengandung urea, glycerin, lactic, alphahydroxy acids (amlactin, carmol).
• Bagi Anda yang berkulit kering dan sensitive harus menghindari pelembut kain saat mencuci dan mengeringkan.
• Setelah berenang, segera mandi dan memakai pelembab.

 

Tips Menghadapi Paparan Sinar Matahari

• Untuk mengurangi reaksi terhadap paparan, gunakan kacamata atau lensa kontak pelindung dengan proteksi UV.
• Lingdungi kulit dan mata menggunakan kacamata hitam, sunblock, baju yang melindungi, dan topi.
• Pertimbangkan untuk mengganti kaca kendaraan dan rumah Anda dengan yang mengandung proteksi terhadap paparan radiasi UVA dan UVB.
• Bagi Anda yang sangat sensitive terhadap paparan, hati-hati dalam memilih pelindung kulit.
• Jangan lupa untuk mengulang pemakaian lotion pelembab ketika kulit terkena air, lembab, ataupun berkeringat.

 

Tips Menghadapi Fatigue

• Jangan memaksakan kondisi badan.
• Jangan malas untuk berolahraga. Banyaknya kasus kelelahan disebabkan oleh kurangnya bergerak dan berolahraga.
• Ingatkan keluarga dan teman Anda bahwa kelelahan bersifat datang dan pergi.
• Tanyakan dokter Anda cara terbaik untuk melawan kelelahan Anda karena SS dapat menyebabkan kelelahan namun masih banyak faktor lainnya.

 

Tips Menghadapi Kondisi Brain Fog

• Selalu laporkan perubahan mood dan memori seperti kecemasan atau depresi kepada dokter.
• Latih otak Anda. Terutama jika Anda berusia 65-70 tahun.
• Keadaan ini dapat ditimbulkan karena efek obat.
• Kurangi rasa cemas dan stres Anda.
• Jangan lupa untuk beristirahat dan relaksasi disela kesibukan sehari-hari secara berkala.
• Kurangi konsumsi kafein dan alkohol.
• Tetap latih otak Anda meski saat Anda sudah pensiun atau tidak bekerja. Belajar hal baru, jadilah relawan, ikuti kegiatan sosial dan kegaiatn yang menstimulasi mental serta bertemu banyak orang baru.
• Perbanyak tertawa dan membagi emosi anda untuk mengurangi stres dan kecemasan.

 

Tips Menghadapi Kesulitan Tidur

• Pastikan keadaan tempat tidur nyaman, aman, dalam kondisi gelap dan tenang.
• Tidur dan bangunlah pada waktu yang sama setiap harinya.
• Setelah jam 4 sore, jauhi alkohol dan kafein.

 

Tips Menghadapi Operasi

• Bagi Anda yang akan menjalankan operasi, konsultasikan kepada dokter Anda mengenai obat-obatan yang Anda konsumsi yang kemungkinan sulit ditemui di apotek rumah sakit.
• Pertimbangkan untuk menggunakan pelembab hidung meskipun Anda jarang menggunakannya.
• Antisipasi kekeringan berlebih pasca operasi.
• Bawalah tetes mata dan pelembab oral dan hidung ekstra.
• Beritahukan kepada dokter bedah, anestesis, dan dokter lainnya jika Anda mengidap SS. Ceritakan kekeringan yang biasa Anda dapati.
• Tanyakan kepada anestesis melalui suster Anda untuk menggunakan Evoxac atau Salagen pada pagi hari sebelum operasi jika itu merupakan rutinitas Anda.
• Sebelum masuk rumah sakit, cek kebijakan mengenai obat-obatan, apakah Anda diperbolehkan untuk membawanya atau akan diberikan oleh suster termasuk obat yang dijual bebas.

 

Tips Menghadapi Asam Lambung

• Hindari makan paling tidak 3 jam sebelum tidur dan kurangi asupan cairan untuk mengosongkan lambung.
• Tinggikan posisi kepala Anda paling tidak 30-45 derajat saat tidur. Namun jangan menggunakan bantal tambahan.

 

Tips Menghadapi Hidung Kering
Cobalah irigasi hidung/ gel/semprotan pelembab.

 

Tips Menghadapi Telinga Kering
Satu tetes pembersih telinga atau minyak mineral dapat membantu telinga yang terasa gatal dan kering.

 

#SSI
#SjogrensSyndromeIndonesia
#Autoimmune

Look below through the categories for over 100 short but essential survival tips for Sjögren’s patients.

General Sjögren’s Survival Tips

• It is important to find a doctor who is both a good partner in treating your disease, as well as a good listener! When seeking information on Sjögren’s, consider the source. Make sure the source is authoritative, knowledgeable and up-to-date.
• Identify major stressors in your life and work with a mental health professional or your support system to minimize their impact. Just because an OTC product is natural does not make it safe or appropriate.
• Always discuss natural remedies with your doctor. Recent scientific data show that longevity is associated with the successful management of chronic diseases such as Sjögren’s syndrome – not the absence of any disease.
• If you have Sjögren’s and are employed, ask for needed accommodations because of your medical condition. Always take non-steroidal anti-inflammatory drugs (NSAIDs) with food or milk to avoid stomach upset.
• Never feel guilty about seeking a second opinion, especially given the overlap and uncertainty with Sjögren’s.
• “No one grew up with plans to have a chronic disease. It just happens. Once it does, you have to do everything possible to live in the best way you can.” (From The Sjögren’s Syndrome Survival Guide.)
• If you are riding an emotional roller coaster of emotions because of your Sjögren’s, join an SSF Support Group and/or talk to a health professional. You will feel better knowing that you are not alone, plus you will find more ways to cope with your disease.
• Listen to your body. Do not take on more than you can handle, and pay attention to new symptoms, or symptoms that get worse, and tell your physician.
• Find a doctor who will coordinate all of your care in Sjögren’s and head your “medical care team.” Usually this is a rheumatologist, but a family doctor or general practitioner may also fill this role.
• Become an active participant in treatment decisions and an informed consumer. You will feel more in control of your disease, decrease anxiety, and ensure you are getting the best possible medical care for you.You can maintain a good quality of life with Sjögren’s. Stay on top of the latest information, educate yourself through the SSF, find support and watch your limits.
• Make sure your physician knows about all the prescription and OTC medications you are taking. Many drugs have side effects that can make your Sjögren’s symptoms worse. Remember that just because a symptom can’t be seen easily, your symptom is still important. If you feel your Sjögren’s symptoms are dismissed by a physician, help educate your physician and/or find another physician.
• Wondering what products Sjögren’s patients use for dry eye, dry mouth, dry nose, dry skin, dry ears, dry vagina, sun protection, reflux and neuropathy pain? Contact the SSF for a copy of its Product Directory.
• Seek positive relationships in your life. These will help you cope and will reduce general anxiety when you have a frequently misunderstood disease.

 

Dry Mouth Survival Tips

• Eat soft, moist foods if you have trouble swallowing or with your teeth chipping and breaking.
• Sjögren’s patients should eat smaller, more frequent meals to stimulate saliva flow.
• Avoid salty, acidic or spicy foods and carbonated drinks that may be painful on your dry mouth or interfere with digestion in Sjögren’s.
• Help prevent dental decay by using oral products containing the sweetener xylitol.
• For dry mouth, increase your intake of liquids during the day. Remember that small sips of water work best.
• Sjögren’s patients should avoid mouthwashes and rinses that contain alcohol or witch hazel. These ingredients can aggravate oral dryness and burning.
  Chew sugar-free gum or suck on hard diabetic or sugar-free candies to help increase saliva.
• Apply vitamin E oil or moisturizing gels to dry or sore parts of the mouth or tongue for long-lasting relief. Use the liquid oil or punch holes in vitamin capsules.

 

Dry Eye Survival Tips

• Try sterile eyelid cleansers or baby shampoo on a warm washcloth to help with blepharitis, a common condition in Sjögren’s that causes chronic inflammation of the eyelids and eyelid margins.The mainstay of treatment for blepharitis, a chronic condition that accompanies dry eye and Sjögren’s, is warm compresses, lid massage and lid hygiene.
• If the blepharitis is acute, you might need a prescription antibiotic ointment.If your eyes are bothered by light, wear sunglasses or try lenses with a FL-41 filter.
• Carry a wet washcloth in a zip-top bag to place on your dry eyes when traveling.Avoid applying anything to the eyelids that can irritate your dry eye; products placed on the eyelid will get into the tear film.
• Sjögren’s patients with dry eye should carefully clean their eyelids with warm water or one of the commercially available eyelid cleansers.
• Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. The goal is to keep your eyes comfortable, not to wait until they are uncomfortable.Keep the upper and lower eyelids free of facial creams at bedtime; they can enter the eye and cause irritation.Dry eye patients often develop or aggravate their environmental allergies. An over-the-counter allergy drop (even if preserved) used twice daily may help.
• Try ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball.Eye ointments and gels can blur your vision and are usually reserved for overnight use.For dry eye, apply a warm, wet compress to the closed eyes using a washcloth.
• Apply at bedtime and upon awakening for 5 minutes, or more often if helpful.If your vision is blurred with artificial tear use, try a less thick (viscous) drop or ointment.
• Try moisture chamber glasses, wrap-around sunglasses, or other glasses, goggles or shields to prevent moisture evaporation and offer protection from air currents that irritate your dry eye.

Dry Skin Survival Tips

• Take short, warm baths or showers to help with dry skin. Hot water removes skin oils.Sjögren’s patients with dry skin should pat dry after bathing and moisturize immediately while the skin is still damp.
• You can use petroleum jelly, bath oil or even some cooking oils such as safflower oil, olive oil, Canola® oil and Crisco®.Drag moisture into your skin by using products that contain chemilas such as urea, glycerin, lactic or similar “metabolic” or alpha-hydroxy acids, such as AmLactin® cream or Carmol®.Sjögren’s patients with dry and/or sensitive skin should avoid fabric softeners in the washer and dryer.
• After swimming, make sure that you shower and then immediately use a moisturizer to reduce dry skin symptoms.

 

Sun Protection

• To reduce reactions to the sun, wear good UV-protective eye lenses and sunglasses, and seek the shade when outside.
• Protect your skin and eyes through use of sunscreen, sunglasses, ultraviolet light-protective clothing, hats, and non-fluorescent lighting.Did you know that Sjögren’s patients can react to the sun and other sources of ultraviolet (UV) light? Consider purchasing UV-protective car and home window films that are clear or tinted to protect yourself from UV radiation.
• Look for the words “broad spectrum” on sunscreen protection. This means that you will be protected from both UVA and UVB radiation.Sjögren’s patients who react to the sun should be especially careful to use sunscreen that protects against both UVA and UVB rays. Doctors now recognize the dangers of UVA light in addition to those of UVB.
• Remember that water, humidity and sweating decrease sunscreen effectiveness and mean you must reapply your sunscreen. Sjögren’s symptoms can be aggravated by sunlight.Did you know that ultraviolet (UV) radiation from the sun and other light sources can affect Sjögren’s patients, leading to skin rashes, disease flares, eye sensitivity and pain? Protect yourself using tips offered by the SSF.

 

Fatigue Survival Tips

• Battling fatigue with Sjögren’s? Know your limits and pace yourself.Don’t be a couch potato! A common cause of chronic pain and fatigue in any disorder, including Sjögren’s syndrome, is lack of exercise.
• Educate your friends and family about what you are going through and how fatigue in Sjögren’s can come and go.Work with your doctor to find a specific cause and treatment for your fatigue.
• Sjögren’s can cause fatigue, but there can be other related causes.Click here to read SSF article, “13 Types of Sjögren’s Fatigue.”

Brain Fog Survival Tips

• Always report changes in cognition/memory and mood, such as depression and anxiety, to your doctor. “Brain fog” can accompany Sjögren’s, but all changes in usual symptoms should be reported.Did you know that “brain fog” is a major complaint of Sjögren’s patients? Hint:
• Train the brain! If you don’t use it, you will lose it.Don’t assume your “brain fog” is due to Sjögren’s, especially in patients over 65-70 years of age: a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.To help symptoms of “brain fog,” minimize stress and anxiety.
• Take breaks throughout the day and learn relaxation exercises and practice them at regular intervals.Reduce caffeine and alcohol to help with “brain fog” and sleep problems in Sjögren’s.Boost your brain power: Continue to work into retirement (part time) if able, learn new skills, volunteer, engage in social and mentally stimulating activities and establish new friendships and relationships.
• Letting yourself laugh and talk about your feelings will help reduce stress and anxiety, which contribute to fatigue and “brain fog” in Sjögren’s.

 

Sleep & Sjögren’s Survival Tips

• Sjögren’s patients who have trouble sleeping should make sure the bedroom is comfortable, secure, dark and quiet.
• To maintain good “sleep hygiene,” get out of bed at the same time every morning and into bed with lights out at the same time every night.Did you know that sleep problems are a major complaint among Sjögren’s patients?
• To help with sleep, avoid alcohol and caffeine after 4:00 p.m.

 

Surgery & Sjögren’s Survival Tips

• Sjögren’s patients undergoing surgery should talk to their doctor about bringing medications and OTC products that are not commonly stocked in hospital pharmacies.If you are headed to the hospital, you should inform hospital personnel during the pre-admission visit or phone call about the OTC and prescription medications you need and are bringing.
• Consider using a nasal moisturizer before surgery, even if you do not routinely use one. Sjögren’s patients tend to be drier than expected after surgery.Anticipate experiencing more dryness than usual after surgery. Sjögren’s patients should bring extra eye drops and oral and nasal moisturizers to the hospital.Tell your surgeon, anesthesiologist and other physicians and staff involved in your hospital care that you have Sjögren’s.
• Share information about your dryness and other symptoms and routine care.If you are headed for surgery, ask the nurse to speak with the anesthesiologist to obtain permission for you to take Evoxac® or Salagen® the morning of your surgery if it is part of your routine care.Before entering the hospital, check out your hospital’s policies.
• You may be allowed to keep your medications at your bedside, or they may be administered by a nurse. OTC products probably can be kept at your bedside for use as needed.

 

Reflux & Sjögren’s Survival Tips

• For nighttime reflux, avoid eating at least 3 hours before bed and limit liquids to small sips to keep the stomach empty.
• Elevate the head of your bed by raising the bed posts at least 30-45 degrees to help with nighttime reflux.
• Do not use extra pillows to elevate the head.

 

Dry Nose & Sjögren’s Survival Tips

• Try nasal irrigation for a dry nose. Instructions for various methods are available through the SSF. Use a moisturizing spray or gel for your dry nose.

 

Dry Ear Survival Tips

A drop of earwax remover or mineral oil can help dry itching ears.

#Sjogrenssyndrome #SSI #GeneralSjogrensSurvivalTips

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