Thoughts

Almost a year has gone by and here I sit - wondering what great things I can write to you. I am still the same, there haven't been any changes with my health other than more illness. It makes me sad that I can't give you any magic words that can make me or you miraculously better. I sit here dumbfounded as what to write. When I was first diagnosed, I was much more scared than I am today and that is something to share. Receiving a diagnosis is just that...a diagnosis. It isn't the end of the world but an obstacle that we can learn to maneuver around, coexist with, handle it, cry about it, get angry about it, and just get over it! I think that those of us that are dealing with loss (of any kind) can truly get what I am saying/feeling. Now, how do I get out of this phase? I have too many things rattling around in my head as I type this post. I will have more constructive things to share with you once I get a handle on all of these thoughts, feelings, and ideas.

Once Upon a December

Mengusahakan suatu hubungan supaya bisa terjadi itu butuh usaha kecil, tapi menjaganya agar tetap utuh itu yang butuh usaha besar. Rasanya seperti baru kemarin, gue dan sesosok makhluk kecil ini menjadi musuh. Gue ingat tatapan sinis yang selalu gue lempar setiap kali berpapasan. Sangat benci, hingga lupa alasan awal mengapa bisa menganggap dia musuh.

Berawal dari SMA, dimana gue punya seorang pacar yang ke ’gap’ SMS-an rutin dengan si cewek mungil, sebut saja dia Rosalinda. HAHAHA. Well, gue bukan tipe cewek pencemburu sih, hanya waktu itu akibat kompor-kompor bertebaran dimana-mana, mateng lah gue dan Rosalinda ini lah yang jadi sasarannya. Hampir 2 tahun, Rosalinda harus jadi korban tatapan sinis gue di sekolah dan di ekskul (sialnya dia, mengambil ekskul yang sama dengan gue). Hingga akhirnya di penghujung tahun akhir mendekati kelulusan, gue benar-benar lupa alasan gue membenci si Rosalinda ini. Juga berkat media sosial, gue dan Rosalinda pun akhirnya memulai percakapan di twitter, yang berakhir dengan kedekatan. Kami bersahabat dekat, pada akhirnya, hingga kini. Mari kita buka kedok asli si Rosalinda.

Namanya BERNIKE ALEXANRIA. Cantik, mungil, lucu, seru jadi korban bully-an, phlegmatic (tapi selalu mengaku-aku sanguine), manis, romantis (CIYEEH), dan masih banyak lagi. Gue ingat dari awal bersahabat, betapa dia yang selalu jadi big supporter untuk setiap hal yang gue lakukan, setiap kata-kata yang keluar selalu terlihat tulus tanpa dibuat-buat. Sedih, karena sekarang kami sudah tidak terlalu dekat. Hanya saja, rindu. Gue menyesal dulu ketika gue dan dia menjadi ‘agak’ jauh, gue cuma bisa menatap perubahan itu, tapi tidak berusaha berbuat sesuatu. Hingga akhirnya perasaan dekat itu berubah menjadi perasaan canggung.

Well, seseorang pernah bilang, sahabat itu seperti bintang, enggak selalu terlihat, tapi enggak pernah kemana-mana, selalu ada, selalu disana.

Happy Birthday My Dearest ❤️

7 Things You Should Never Say

I hope that the more people know about autoimmune, the more people can get tested, and the more people can get helped quickly. I don't know autoimmune better than you, but I just want to share what I knew and what I experienced with autoimmune suffer. My purpose is to bring the knowledge so we can understand them (Autoimmune Suffer) better. That's all they need.

Here, 7 things that you have to think twice or maybe better to not mention to people who suffer with Autoimmune:

1. It's all about your mind. If you think you are sick, then you'll be sick. Try to be more positive about yourself.

The sickness is in their blood, in their immune system. Even they have the most positive mind, it doesn't change their condition with autoimmune.

2. My best friends cousin has Autoimmune and she's doing great or my best friend's cousin passed away from Autoimmune.

Autoimmune is a chronic disease. It affects everyone differently. And you cannot compare one to another. They are dying every day. They are fighting every time. The thought to die one day because of this disease is the worst thing. So, it's better to not mention that.

3. But you don't look sick, so it can't be that bad.

This is the most frustrating comment for the people with autoimmune. They feel the pain so real in their body but people cannot see the pain.

4. Maybe you have to do more exercise so you're not always feeling sick.

They are sick. That's the only reason why they always feeling sick. Nothing to do with exercise. Even minimal activity can cause flare up.

5. You're over exaggerating. It could be a lot worse.

The pain is unbearable for people who suffer with autoimmune. Please, believe them when they said they are in pain and sick. They just try to explain what they feel. That's it.

6. You don't get out enough.

Do you know the sun is dangerous for people with autoimmune? They are not allowed in the sun. Some medications forbid them to be in the sun. The sun causes flare-up and condition to worsen.

7. You don't believe how tired I am.

People with autoimmune always feeling tired. They can't even do what they plan because this sickens so unpredictable. In knowing that autoimmune is unpredictable may help other people understand their physical and emotional ups and downs as well as the changes that they may have to make to schedules, plans, and commitments.

Day By Day

Have you ever had a toothache, and not been able to get to the dentist for a couple of days? In that situation, you are always distracted, whatever else you do, you are aware of your tooth. Something as small as a single tooth can affect every part of your life until it is fixed. Now imagine what it is to have that pain, not just for a few days, but permanently. This is what it's like to live with pain as a symptom of a chronic condition.

For me, pain tends to be in the joints on my left side – especially my shoulder, wrist, thumb, hip, knee and ankle. Doctors can't explain to my why it's these particular joints. I do have some relief from pain – drugs can control it some of the time. When it's not under control, like the toothache, the pain is impossible to ignore.

We're always told that pain is a sign of something wrong. For some people, pain is just the way things are. We have to make the most of life, no matter how bad the pain is at the time.

My first task in the morning, before I get out of bed, is to work out which parts of my body are hurting and how much, so I can plan how I will handle my day, taking into account the limitations of pain. For me, pain increases with fatigue, and fatigue is just a normal part of autoimmune. So if I am tired at the start of the day, I know my pain levels will be worse along with my fatigue levels.

For many people, a week of pain is something horrible. For me, a week of pain is “normal”, and a week without pain is something to celebrate.

I always carry my day's pills with me. If I am away from home longer than expected, and can't access pain control I could be in serious trouble.

The things that help control pain for me are: medication; anti-inflammatory; rest, especially making sure I have my afternoon nap; gentle stretching exercises, as long as I'm not in severe pain; long soaks in a warm bath. Massage is sometimes helpful, sometimes makes things worse. Attempting to control my weight should take stress off my joints and help with pain control, but this is complicated by pain making exercise difficult.

Is there an upside to this? I have learned to treat little things as precious. If I can't manage a garden, I can put some herbs in pots and enjoy them. Going out for a coffee with friends is a major effort – but having made the effort has makes it all the more precious to be able to do it.

But You Don't Look Sick?

My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real. 

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability. 

My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all. 

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. 

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Indra's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. 

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. 

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it. 

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. If I can stand the pain, regular massage can help, at least temporarily. Massage is sometimes helpful, sometimes makes things worse.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going. 

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else.

When you have an invisible illness, it's hard to explain to someone who doesn't have a clue. It's a daily struggle being in pain or feeling sick on the inside, when you look fine on the outside.