Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.
Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.
During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.
Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.
In response to The Daily Post’s writing prompt: “Forward Drive.”
Into the parking garage to park. Down one elevator, up the next. The familiar pattern leads us to my Rheumatologists one office and to the doctor that I have slowly realized everyone else defers decisions to and is more concerned with. The weirdest adjustment I’m dealing with right now is that since getting a Rheumatologist, everyone wants to know what he is saying, what his decisions on everything is.They are much more concerned with who my Rheumatologist is. It seems like an overwhelming amount of power of my care lies with this individual. This in turn is requiring me to learn to put a great deal of trust into him. Slowly I’m getting there. After being “burned” by a few doctors in the beginning of getting sick, I find it harder to blindly trust doctors these days so it takes me a while. Each appointment though I get closer to being comfortable with the amount of trust I must have in Dr. L.
Last week I had my 1st Rheumatology Appointment of 2015. Overall it was a positive appointment, Dr. L was in a great mood and we covered a lot of the concerns I had with my conditions and medications. My Rheumatology appointments tend to cause me more than the other doctor appointments but this one went smoothly and other than the fact that I am still waiting on pending lab results, which has me scratching my head a little bit as they are marked as received. Hopefully soon I will be able to see the results as well.
I went over notes from my last flare with him that happened back in Nov. and how Dr. C and I handled it, he was okay with how things played out. If I should experience another once before my appointment in May I am to try get into see him. If not I’m to document it with pictures and such as best I can. I told him about the rib pain I experience during flares and he made sure it wasn’t my liver or gallbladder (I tried to tell him I was sure it wasn’t). He wanted to be sure. I also experience a cyclic flare in my joint pain that coincides with my menstrual cycle so he wants me to try taking Naproxen beginning mid cycle (or thereabouts) to stay in front of the pain to see if that helps prevent it from getting too bad. We went through our usual sequence of the joint squishing and I was happy to be able to tell him I was in less pain than previous appointments.
I talked to him about my desires to walk in the Lupus Walk in May and he told me that would be great, as long as I remembered to wear my sunscreen. Which made me realize why they hold the event in the evenings… D’oh!!! Sometimes my brain takes a little time to process. haha!
I’m pretty sure he was on a mission to see how many times he could say Lupus during my appointment. He issued a reminder that my INR was better off being kept 3-4 and that he would send a note to Dr. C stating his thoughts and notes from this appointment. Fair enough. Hopefully those notes will reach Dr. C before my Follow up with him next week. That would be helpful.
We discussed the fact that azathioprine was a little difficult to refill last month and that the pharmacist said I may have to switch medications due to the shortage. He didn’t seem a fan of that thought process, and neither did I. So he called me in more refills of it and the plan for now is to continue on that path unless we heed to go another direction. The medication is working well and I am for the most part stable. That is something to be happy about.
My next appointment is an 8am appointment in early May. Hopefully he will be in a good mood then as well! He is rather hilarious when he is in a good mood!
The Lupus foundation is doing a Campaign called Dear Lupus. Imagine you could sit down face to face with Lupus and have a conversation. What would you have to say? What would you want Lupus to know?
Here is how you can participate:
Get started. It’s simple.
- Create your Dear Lupus™ video. Share how lupus has impacted your life and how you persevere in the face of the everyday struggles and challenges of lupus.
- Upload Your Video: Upload your video to YouTube, or any other video platform. Include “Dear Lupus” in your video title and tag it with #DearLupus.
- Submit your video and share it with friends and family.
Be sure to visit Lupus Foundation of America Dear Lupus for more information and to read the Terms & Conditions to participate. If you do participate I would love to hear your story, and see your videos, please comment with links to your Dear Lupus videos! Even if you don’t plan on submitting for official participation, I’d love to know what you’d say to Lupus if you had the chance!
To help the doctors diagnose Systemic Lupus Erythematosus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
1.Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2.Discoid rash – a rash that appears as red, raised, disk-shaped patches
3.Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4.Oral ulcers – sores appearing in the mouth
5.Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6.Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7.Kidney disorder – persistent protein or cellular casts in the urine
8.Neurological disorder – seizures or psychosis
9.Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low-level of specific white blood cells), or thrombocytopenia (low platelet count)
10.Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11.Abnormal antinuclear antibody (ANA)
Not all symptoms have to be present at one time, and not all symptoms have to be observed by the same doctor. This is where a health team that communicates and works well together comes into play. You will notice I have bolded several things, these are my personal symptoms that led to my diagnosis of Systemic Lupus Continue reading “The Diagnostic Criteria for Lupus”
May is Lupus Awareness Month. To kick it off I thought a discussion on the types of Lupus was appropriate. The Lupus Foundation of America estimates that 1.5 million Americans and at least 5 million people worldwide have a form of Lupus. 90% of those affected are women. It can affect men though and one form largely affects men more so than women. Without further ado here are the Types of Lupus affecting millions of people:
Systemic Lupus Erythematosus
SLE is the most common form of Lupus and it is what most people mean with they tell you they have lupus. Systemic lupus can be on the spectrum from mild to severe. It can involve any organ and the symptoms present can vary from each person that it affects. There are 11 criteria used to diagnose SLE I will do a separate post on this tomorrow. The most common organs affected are the heart, kidneys, brain, and lungs. A lot of people who have this form of Lupus experience a rash called the butterfly (malar) rash which is a red rash across the cheeks and bridge of the nose. It can vary in severity. It is not present in all SLE patients. A lot of people with SLE also experience other skin rashes and sun-triggered rashes and discoid rashes. People with this form of Lupus also experience joint, muscle pain and fatigue and will often complain of feeling like they have the flu from day-to-day.
This is the form of Lupus that I have. I was diagnosed in March, but it appeared in print for the first time in my medical record on 4/1/2013. I’ll discuss more of my personal story tomorrow when I talk about the diagnostic criteria that is used, and I will talk about my own personal story that led to my diagnosis.
Cutaneous Lupus Erythematosus
CLE is limited to skin involvement. It causes many types of rashes and skin lesions or sores. The most common is called a discoid rash, a raised scaly red rash that is not itchy. It appears as discs or circles on the skin. The butterfly rash is also common in CLE. Other rashes may appear on the face, neck or scalp. A lot of the rashes can be worsened to exposure to sunlight or even fluorescent light. It can cause sores in the mouth, nose and vagina. Hair loss and changes in color, skin pigmentation are common in CLE. Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus later on. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.
Drug-induced Lupus Erythematosus
Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but it rarely affects major organs. This form is more common in men because they are more likely to take the medications that trigger the Lupus-like symptoms. The Symptoms usually disappear within six months after the medications are stopped.
The drugs most commonly connected with drug-induced lupus include:
- Hydralazine—Treatment for high blood pressure or hypertension
- Procainamide—Treatment for irregular heart rhythms
- Isoniazid—Treatment for tuberculosis
Neonatal Lupus is not a true form of Lupus. It is a rare condition that affects the infants of women who have Lupus. It is caused by antibodies from the mother acting upon the infant in the womb. At birth the infant may have a skin rash, liver problems, low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. However, some infants with NL can also have serious heart defects. With proper testing doctors can identify at-risk mothers and infants can be treated at or before birth.
Every person with Lupus has a story, it is a journey and it affects each person differently. If you or someone you know has Lupus I encourage you to take part in Lupus Awareness month to help raise awareness. There are several ways you can do this. Please visit Lupus Awareness Ideas for ways you can help raise awareness!
I’m not one to shy away from spicy food, not even my chronic illnesses will change that! I love heat, when done right. Call it my little piece of rebellion, my little corner of culinary masochism. I am a cook, I can create some amazingly tasty dishes. I also know my way around spicy foods. Not everyone shares my love for the burn. So I have over the years adjusted my desires to fit within limits. Occasionally we will be out for a meal and I will indulge in a dish that is above the comfort levels just so I can feel the warmth of the spicy burn as it engulfs my taste buds.
Spicy food really isn’t a form of self-torture for me. I truly do enjoy it, when it is done right. Throwing hot stuff in a dish just to call it HOT does not deem it a Spicy dish done right. Spice is meant to augment the flavors within the dish not to be the flavor. It should compliment the dish, not overwhelm it. This makes me want Thai food, it is one of my favorite ways to consume the heat, and one of the best ways to achieve the Ring of Fire!
Expectations come in all shapes and sizes. They can encompass many things. My greatest expectation was that I would lead a happy, healthy life. That my well-being was solid. Through-out my 20s these things were easy. I fell in love and moved to the city I now call home. I. Like most 20-something year olds expected my health to hold out and that my well-being would be great. Life was good, and happy. In my late 20s I convinced my husband we should have a baby. He is older than I, and has two adopted children from a previous marriage that are grown. I wanted a child of my own. I had no reason to suspect this would be an issue so we began trying for a child in the fall of 2012. In 5 short months I fell pregnant and then 10 short weeks later, miscarried. That is when my greatest expectations began to shatter. I sit here at 30 wondering what the next decade holds, I was certain I was going to rock my 30s. That they would be awesome. So far, they are off to an awkward start, I feel like I’m an awkward teenager again. I am not comfortable in my own skin, I miss feeling at home here.
So what happens when your body deceives you? What do you do when the things you thought you could trust are no longer true? Your immune system is supposed to be there to protect you. What do you do when it launches an all out war on you?
I catch myself thinking sometimes I should’ve seen this coming. The signs have been there. I knew my family history. I knew Lupus was lurking, waiting. Was this denial that it was in my genes some odd form of rebellion against my father? Alas, it’s on both sides of my family. So denying that it exists in one set of my genes does not save me completely.
I have to recalculate my expectations now. I don’t get to have the health I thought I would have for the rest of my life. Or at least not on the same scale that I was on before. I hope that my Lupus (that still seems so weird to say) is a case that can be well controlled by the treatments my doctors have begun. I hope that this isn’t too hard on my family. I hate having to watch them go through this.
I’ll find happiness again. I’ve always succeeded at finding happiness. I just have to sift through the hard time long enough and eventually I will make it to happier times again. Plus I have an amazing amount of support in my life that won’t let me stay down for too long.
So that’s what I’m doing. I’m at the crossroads, I’m 30, and I’m re-calculating my expectations.