I’ve been in and out of the hospital more times than I can count on both hands. With each experience, I’ve gained so much knowledge not only about my autoimmune condition but also about myself. In this post, read on for some tips about how to make you next in-patient hospital experience more comfy.Continue reading “How to make your next in-patient hospital experience more comfy”
One of the most helpful tools for your doctor and yourself during your appointments is keeping a pain diary and symptom tracker or log. This way you can pinpoint exactly the time and date of when an autoimmune disease flare-up occurred, monitor, what you were doing each time and have a better understanding of what sets you off or what looks to be caused by more general things such as weather or the time of day.
This blog is dedicated to the people with autoimmune conditions and the people that love them. It aims to educate both parties on how we can both work through these diseases together. For family & friends, how they can care for and support their loved one diagnosed; and for the autoimmune patient themselves, how they can better cope and involve their loved ones. So what roles can you play as ‘The Watcher and the Patient with an autoimmune disease’?
Types of doctor’s appointmentsDuring my previous experiences, I’ve come across all different types of doctors, and I don’t just mean different like a neurologist to a GP (I did that too). But I mean different doctor’s appointments with varying personality and style.I really admire some amazing doctors that I have come across, who are compassionate, dedicated and just make you feel safe. I’ve also come across some who I didn’t feel comfortable with.When it comes to your appointments, you need to feel comfortable with your doctor. You don’t want to develop “doctor appointment anxiety” and not god. Doctors are people too and have different attitudes on how they deal with patients. Some are wonderful, and make sure that you feel cared for which is important with autoimmune conditions.
The ‘not so wonderful’ doctorsI have experienced not so wonderful doctors (in my own personal opinion) when I really felt attacked and almost as if I was a burden to the doctor and his long day. This isn’t a good situation. While I don’t blame him for being the way he is (we’re all just people and take along with us our own set of beliefs, attitudes, daily thoughts etc), I definitely did not want to continue going to someone who obviously wasn’t in the mood for understanding and would probably add unnecessary stress.Some people get into the medical world and maybe their hearts were never originally in it, or maybe things have happened to them when they had bad experiences themselves with patients. But whatever the reason, when it comes to conditions like ours, you need someone who will not only give you the facts but support you in your overall life quality.
Respectful doctorsThey can help you with exercise regimes, eating properly, monitoring your medicine and blood tests etc. I believe it’s a two way street, just like any relationship there needs to be respect from both parties. We need to respect our doctors as they have a lot of knowledge and can help us with things we don’t understand.Doctors also need to respect their patients, as patients come to them not just with these medical problems but with heavy hearts. They are worried and don’t really want to create more problems. While it can be frustrating, and not all the time will answers be straight forward or maybe even be doable at the time, both parties need to understand that is an ongoing process.Autoimmune conditions are complicated, even a little bit of explanation of how things are going can be helpful, letting the patient know what is really happening but in a gentle way. Patients, similarly, also need to keep doctors up to date.
Doctor Appointments Tips and IdeasThe following are some tips and ideas I’ve learned along the way through my journey to getting the best out of an appointment at the doctors:
Have a positive attitude but be honest tooI know everyone’s personalities are different. You might not have the same problem I had before. I used to be ashamed of what was happening to me and didn’t want to be too honest with what was going on with me. While I still don’t talk much about what is going on in person, I have learned that having a condition like ours is definitely NOT something to be ashamed of. It’s not your fault what is happening. But what you can do is remain positive.I don’t like to dwell on my problems, because I believe that if you focus so much on the bad things or the pain, then you’ll just feel it even more. Whether you want to share about your condition to someone personally is your prerogative. But when it comes to being honest with your doctor. You definitely MUST tell them what is going on. The doctor would ask me “so how are you?” and I’d reply “I’m great”, but it wasn’t true. You don’t need to pretend to be okay.A lot of the times with autoimmune conditions you might “look” healthy but there’s a lot of things going inside that just don’t show on the outside. You need to be honest with the symptoms you are experiencing, don’t expect a doctor to be able to help you if they aren’t able to see a clear picture of what is happening. It can save you a lot of pain and suffering.
Keep your “support” team close to youOne big lesson I have gained from all of my experiences is that we need to keep our family and friends close. If you feel nervous or scared, you don’t need to go to an appointment alone. You can bring along someone close to you, even if they aren’t able to say much or do anything specific, just having them there can make you feel more comfortable. After your appointment, they might be able to help you with remembering what you need to do, or assist you with tasks that you find hard to do on your own e.g opening a can of beans.
Keep a diarySome appointments might only be a few times a year, with months being in between each, I find it’s a great idea to keep a diary so that you can explain what happened, when it happened and have proof as well. I once got a bit of a wakeup call when I was in the ER, and I told the nurse I had fevers. She asked me, “how often? what temperature?” I didn’t keep a diary then, and wasn’t able to answer her.She told me that by just saying you have fevers isn’t so helpful because they might not even be fevers. While her manner of speaking was a little brusque, I really appreciated her honesty because after all the years of just going through the motions, I realised it would be better to actually record my symptoms, making it easier for the doctor and I to track my progress.Even years later I can look back at my diary and recall periods where I hardly had any complaints, to other periods where the pain was unbearable. I can then see what things I may have done differently those months, or whether it was just sort of random. You can also use this diary while you are at the appointment itself, jotting down little notes of advice or reminders. You’ll find it very useful and I even found that since my memory sometimes gets a little hazy (sometimes from medicine or from random neurological symptoms I get) I feel at peace know it’s been written down somewhere before I forget.
Have a list of questions readyAs I discussed before, some appointments might not happen for months, so it’s always good to come prepared and make the most out of your 15-30minute appointments. Have a list of questions ready that you would like to address with your doctor. It makes better use of both your time since you get to the point, and also when you leave you feel like you have gotten something out of the appointment.Earlier on there were many times I left appointments feeling a little bit wanting. While I know doctors can’t solve everything in one go, but even little questions like the following can make you feel you benefited from having the appointment: Is there any advice you can give me for improving my sleep? Or maybe, is it okay to use topical cream to help the pain in my knees? I always come prepared with my list of questions, and I’ve had very positive feedback from my doctors too for bringing one.If ever you feel like something needs clarifying or you don’t quite understand, don’t be afraid to ask even if isn’t on your list of questions. It’s good to ask questions so that you don’t have any fears to worry about later on too and gain a better understanding of what you think you need to know.
Bring along any scans or resultsSome doctors will remind you this in a pre-appointment letter, while others don’t. But it’s always good to bring any results that may help in explaining your current condition to the doctor. They can decipher the results and then explain to you what they mean.
Make a Medical History SummaryAfter so many years, you’re going to have a lot of information about what you have experienced. I made a medical history summary a couple of years ago, and found it really helps to keep new doctors up to date, and remind old ones of what’s happened. The idea is to have a copy for yourself to update, and to give one to your doctor as needed. You can set out your summary any way you like. I actually keep two. One is about 4-5 pages, and that might sound like a lot, but I divided my major milestones by age, for example:
|Age 13-15||• migraines• insomniaetc.|
|GP, Neurologist, Otologist etc.|
|12/30/10 – 5/1/11|
|Check up with Ophthalmologist, in connection with vertigo and nausea. Medicine changed, prednisone now higher at 30mg per day|
|Arthritis||– warm areas, migratory, non-asymmetrical, in major joints, stiff, swollen, painful to touch, limited mobility etc.|
|April 16, 2006:||Can’t move right hand fingers, painful, put on warm compress, took Celebrex, pain eased after a few hours|
Medication ListYou can then go onto listing down the medicine you are taking, what time you take it, the dosage you take and how long you have been taking it. You might remember all these, but it’s good to have this written down so your doctor knows too and can look back onto your own written files to compare with his own notes.I mentioned earlier I keep two summaries. Now the second one, is a concise version, I limit it to one page only. This is most useful for emergencies, or first time appointments when you just want to give a brief overview of your medical experience. I did this by just giving the dates I was diagnosed with anything major, or admitted to hospital. Then go onto listing current medicine, and symptoms (without explanation). The longer version of my summary is useful for doctors later on when they want to know more. My doctor told me he was really glad I had given him what I was going through in my own words because it helped him understand how I saw it and where I was coming from.
Get a ReferralThere have been many times when a doctor I saw wasn’t really the person I should be seeing. If you know, and feel the doctor knows too that you need to be seeing another specialist then get a referral. Don’t be afraid to ask one. The doctor will be happy too because they’ll be worried if they can’t provide the proper care to you or your condition is out of their knowledge scope.*~*~*~*~*I wish you all the best at your next appointment. Feel free to message me anytime with your comments, or other ideas on how to get the best out of your next appointment. Just remember to keep smiling, take care of yourself, and keep your loved ones close
Blood Test and Blood LevelsThroughout your testing, blood tests is the initial step your doctor will take to diagnosis. You may have a high CRP or ESR. Continue reading “Polyarteritis Nodosa Symptoms and Relief”
The first diary entry
The bed felt cold, lonely and I couldn’t wrap my head around the fact that I was in it. It scared me. They told me they would run a few more tests and that there wasn’t anything to be worried about. I closed my eyes, took a deep breath, and felt the gentle squeeze of my dad’s hand. It felt familiar, reassuring.
We had been traveling the country over the past few months to get answers. What was happening to me? I was 12 years old and I couldn’t recognize myself anymore. Black-bluish scars and other red blotches of raised red skin bombarded my legs. There were days when I woke up and couldn’t get out of bed. My knees so stiff my mum had to put a warm compress beneath them to help stretch them out (later I would find out this is what arthritis is).
I would get ready for class and get so frustrated for doing just simple tasks like trying to brush my hair. These skin disturbances or “lumps” as I always referred to them as were spreading all over my body, and it wasn’t just that they looked bad, they were painful to touch and restricted the mobility of the joint they inhabited.
These amongst a myriad of other symptoms were my taste of what an autoimmune condition could do to you.
It would take me 8 more years, 4 misdiagnoses, 8 hospitals, 12 specialists to get “officially” re-diagnosed with Polyarteritis Nodosa.
Beginning the journey
From neurologists to rheumatologists and otologists (ok you get the gist, no pun intended, ok maybe it was) and numerous GPs & ER teams, innumerable breakdowns and 8 major flare-ups, is how I got to the Polyarteritis nodosa diagnosis.
Looking back, I believe I have learned so much and I feel that my lessons could help a lot of people. Polyarteritis Nodosa (PAN) is one of the many rare autoimmune conditions that exist today.
An autoimmune disease in my own words, is when the body believes there is an “enemy” inside, even though there isn’t. It’s when our body’s tissues attack itself, instead of this so called enemy that the immune system is detecting.
An autoimmune condition can manifest in many ways. There are more than 80 different autoimmune diseases discovered so far. One problem with these conditions is that some of them mimic each other. It is always best to get the closest diagnosis you can. While a lot of other Autoimmune diseases are treated are similar, being diagnosed can change the whole course of your condition, especially if you are getting treated for symptoms you aren’t even experiencing.
Research shows that PAN occurs more frequently in males, and in the age groups of 50-60. However, obviously cases like mine exist.
Looking back and having all the knowledge I have about conditions like mine, I realise the process started in me when I was already 12 years old. I feel strongly about educating people about this condition, while it is a serious illness, it can be treated and you can live a full life. Albeit a little bit different where you will need to make some changes, but never lose hope. There is a large network of people out there going through similar cases even if it isn’t exactly PAN.
In the next few blog entries, I would like to tackle other issues that those with PAN or autoimmune conditions face and help give some advice to get you through your dark days.
Having an autoimmune condition can be very frustrating, you may go through a lot of times when this “invisible” or faceless enemy inside you really tries your inner strength.
Trust me, I’ve been there. It can be a lonely, scary journey, but you need to keep your friends and close. While it will be hard for them to understand, know that they love you and will learn to cope, as you do as your condition progresses.
In the future of this blog, I also want to make information more readily available for you. Here you’ll find all the information related to PAN and some other similar autoimmune conditions.
One stop info hub
I personally found that it has been hard to get all the information in one place, and have been researching for answers on my own for years. I think it is good to educate yourself to understand what is going on in your body and why. But it is also best to talk to your doctor. Be open and honest with them. If you feel you aren’t getting the support you need, it is okay to get a second, or a third opinion, heck I got twelve of them. I’ve seen all kinds of doctors, and with each experience, you can take a little bit of wisdom with you.
At the end of each blog entry, there will be links to these informational sites, the blogs themselves, however, will be firsthand encounters and information from a patients point of view. I believe we need to equip ourselves with not only medical information but “emotional” information. Conditions like these don’t just affect our bodies, they can affect our emotional well being.
What is Polyarteritis Nodosa?
Here’s a short video that helps explain PAN briefly:
An in-depth explanation of Polyarteritis Nodosa
For a detailed description of PAN take a look at http://www.empowher.com/media/reference/polyarteritis-nodosa
Polyarteritis nodosa is an autoimmune disease is a condition in which your body’s immune system mistakenly attacks your own body.
With Polyarteritis nodosa, small and medium-sized arteries (blood vessels that carry blood from the heart to the rest of the body) become inflamed and damaged. The inflammation of the arteries affects many different organs, including the skin, CNS, peripheral nerves, gastrointestinal tract, kidneys, heart, joints, ear, nose, throat and lungs. With cutaneous (or skin) PAN, leukocytoclastic vasculitis can be seen.
Polyarteritis Nodosa Support
- To read about other people’s experiences with PAN, surf onto http://www.experienceproject.com/stories/Have-Polyarteritis-Nodosa/639792
- For other autoimmune conditions, and also a sense of community, there are a few on Facebook, for instance: Autoimmune Angels and for PAN specifically, try: Men and Women Living with Polyarteritis Nodosa.
If you want any advice, would like me to write about a specific topic or would like to share your story here please feel free to contact me via email or on social media.