Spoonie Life

I am a Spoonie. Some of you are Spoonies too. Some of you are reading this and feeling a sense of togetherness and community. Though our symptoms may vary greatly and our conditions may not be the same, as Spoonies we are part of a huge support group.

For those of you not familiar with the term Spoonie let me offer you an explanation. A spoonie is a person living with one or more chronic illness that identifies with Christine Miserandino’s Spoon Theory. Spoon Theory is a dramatization/illustration of what life with a chronic condition is like using spoons. It’s worth reading through if you happen to have loved ones that live with chronic conditions such as Lupus, APS, Rheumatoid Arthritis, Asthma.

I have two conditions that make me a Spoonie. Lupus and Antiphospholipid Syndrome. They both cause their own set of problems and at times it’s really hard to tell which is the bigger pain in the rear. The scariest of the two is definitely APS. It is an autoimmune blood clotting disorder. Due to it I had a miscarriage May 2013 and then a series of TIAs over several weeks later that year. Autumn of 2013 I also suffered from a blood clot in my right eye and now have a blind spot because of it. Other complications from APS include chronic migraines, brain fog, and other neurological issues. Lupus also causes me chronic joint pain, rashes, chronic fatigue, flu-like symptoms, random fevers, and a plethora of other symptoms that have been difficult to learn to live with. Even the medications (this should read small pharmacy that I have acquired) have crazy side effects and have been an adjustment.

Life as a Spoonie means starting the day knowing I have to make decisions based on not what I need or want to get done, but more so based on these ruling forces in my life that change from day-to-day. My energy levels and physical abilities (number of Spoons) varies greatly from day-to-day. As a person that has never been one to set quietly on the sidelines, this has been a very frustrating realization and acceptance process. There are still moments on a day where I start the day with fewer spoons than I need to accomplish what I need that I get discouraged and feel hopeless. I constantly have to remind myself to take time out and reserve my  spoons. Running out of spoons puts me at risk for a full-blown flare of my conditions and then instead of having a day where I do low-key activities and take time off for myself, I may end up being down for the count for over a week.

It’s odd to view every task as something that may be the task that benches you for the rest of the day. That’s how my life is though. I know at any moment, even on days that my energy is plentiful, it could all vanish with no warning. Vanishing spoon syndrome is what I like to call it. So I try to plan my day accordingly and make sure I get the most important things done early. If I can get the important things done first each day, hopefully on the days I run out of energy before the day is complete, I can move my list of uncompleted tasks over to the next day to be completed tomorrow.

Being a spoonie has taught me the value of knowing that not everything has to be done when I think it has to be. That some things can be put off to another day. It has made me reevaluate how I do certain things and it has caused me to implement some changes in my life. I have also over the last year of being a Spoonie found ways to make the processes I deal with easier, and I’ve gotten creative with how to save spoons. That’s what you do though, you learn how to live life within the restraints your conditions place upon you while living life to the fullest. That statement seems contradictory but it’s the reality of it. It’s amazing how many contradictions being a Spoonie has brought into my life.  Here are a few of them. The amount of medicines I take just to feel somewhat close to normal, but I’ll never be healthy again. I’m on medicines that are considered High Risk and that could cause cancer. This came with a verbal warning that went something like this “This may cause Leukemia or Lymphoma but it’s our best bet at making you feel better. Plus the good news is we can cure those! We can’t cure Lupus”.  I see my doctors more than a lot of cancer patients see their doctors, I’ve actually been told this by both an Oncologist (who happens to be my Hematologist) and by a cancer patient who was recovering after a few rounds of Chemotherapy.

Most of all being a Spoonie has left me at this odd point in my life where I find it very hard to relate to a lot of people. I’m just very lucky and grateful to have a close group of loved ones that love me for who I am and that are very supportive and accepting of who I am regardless of the changes that have occurred in my life.

I’m excited to say I am taking part in the SUPER SPOONIES STORY SWAP. It’s a network of other Spoonies sharing their stories about their Chronic Illnesses and what life is like for them. I encourage you to check it out. It is a pretty cool project!

 

 

 

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In the Lupie-Loop

This week I’ve read over some great information about Lupus, Lupus awareness and other topics relating to common threads of interests. I thought I would share them with you all here. Please take a moment and check them out!

This blog is also doing a Lupus Awareness Campaign for the month of May. There are several blog, myself included that are doing various things to raise awareness during Lupus Awareness Month, check out this blog to see what they are doing!
The benefits and risks of long-term Prednisone therapy. I know from my short-term experience a couple of weeks ago, I felt the best I had felt in months on Prednisone, but through conversations with my PCP, it was clear that LT Prednisone was something we want to avoid as long as we can. 
Cartoon image of Christine Miserandino holding a spoon
Spoon Theory by Christine Miserandino. A great explanation of what it is like to live with  Lupus using spoons to illustrate the choices and fatigue we are faced with daily. I have shared this post with friends and family to give them a way to relate to what it is like having to live with Lupus. It has opened up a lot of conversations and helped open lines of communications. 
Stress Reduction
Stress reduction tips and why it’s important to people with Lupus. Stress can be overwhelming at times, not only to the newly diagnosed. Stress plays a role in flares as well. Getting stress levels under control can lead to feeling better overall. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Once a month I will try to post a roundup of information that I stumble across that I think will be of interest to my readers. If you find things that you think others would find beneficial or entertaining and would like to submit it for consideration for June’s round-up please leave a comment with the information, send me a message on Facebook, or

The Diagnostic Criteria for Lupus

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!

May Lupus Awareness 2014 Month Flyer-page-001

 

May is Lupus Awareness Month! Here are a few ways you can raise awareness! I plan on doing my part to help.  Do you?  I will also be taking part in Put On Purple Day! Will you take part with me?

 

 

 

To The Newly Diagnosed Chronically Ill

Dear Newly Diagnosed:

I know it’s scary right now. I’ve been there. I don’t know the specifics of your situation, nor do you know those of mine. That’s not important right now. I want to share with you a few things I wish I had of had someone say to me at the beginning of my journey. I’m just a few months in, still at the beginning, but when I look back, I realize I’ve made strides from where I was, before I had answers.

You have a lot of information flying your way, and in a way it’s not enough. With each bit of overwhelming information, there’s a new question created in your head. It’s overwhelming. It’s terrifying. Doctor appointments will be overwhelming, write down your questions. Don’t be afraid to tell them you are overwhelmed, and scared. I cry in front of my doctors a lot. It let’s them know you are real, that this is affecting every part of you. That you aren’t just an illness. Also if you have skin rashes or the likes as part of your condition, take pictures and show them to your doctor, especially if they have the tendency to disappear before you make it to an appointment.

Find online support groups. Utilize Facebook, as odd as it sounds, there are an amazing amount of Chronic Illness support groups on there. It will help you to find others going through similar things. With that said, know that everyone’s journey with an illness is personal. Just because “Julie” is experience “scary symptom A” it does not mean YOU will. Also know sometimes people exaggerate online. You will learn quickly how to spot this type of behavior, if you are smart about it.

Breathe. You will forget to do this from time to time. I know I did. I still do.  Sometimes you have to take a few minutes and just relax. It seems to a common phenomenon across the board, 1. get sick, 2. develop anxiety issues.

Do not be afraid to ask for help dealing with anxiety/depression. If these become more than you can handle on your own, let your doctor know. There are plenty of options out there including medications, therapy, groups, etc. Do not suffer in silence. Please get help.

You will have a lot of different loved ones trying to tell you a thousand different things to ‘make you better’. They love you. They are trying to help. They mean well, but most of it will not make any sense because, they do not understand your condition. This will eventually get annoying. Learn to take it in stride, and love them back.

A harsh reality, you will lose ‘friends’. Some of the people who drift away from you will surprise you, and it will hurt. Some people can not deal with having a chronically ill person as a close friend. I hope you can be more graceful about this phenomenon than I was. I let myself get hurt more than I should-be. You will as a trade-off, learn who your true friends are, and you will strengthen those relationships and they will become even more awesome because of this.

People will say some really hurtful things without realizing it. They will be under the guise of being helpful or meaning well. They will come in the form of things like “I hope someday you can forget you are sick”, or “Maybe you should stop talking about being sick”. Realize you have every right to talk about your life and what is involved in it as much as you want to, just as they do. They talk about their crappy day at work, or their woes with divorce all the time and you listen, they should support you and be there for you when you need to talk about this part of your life too. The point I’m conveying here is, to us chronically ill folks, this is part of our everyday life, it should be okay for us to talk about it.

Friends and family members will go through stages of acceptance that you don’t expect. I still have a friend, who even after I’ve been officially diagnosed by my doctors, refuses to accept that I have Lupus. I guess she thinks I take the medicine for all the fun side effects.

Speaking of doctors, I have a few thoughts 1) You will see them a lot in the beginning, make sure you enjoy their company. I know that seems silly, but it can be the difference between being in complete misery every appointment or being near someone pleasant. I have 4 doctors, and I definitely have my preference as to who I prefer to see, based on personalities. 2) If a doctor is not a good fit, and you do not feel they are meeting your expectations, find a new doctor. It took me a couple of tries to find a Hematologist that was a good fit. I’ve been extremely lucky with my other doctors. 3) Also if you have one specialist, and need another specialist… don’t be afraid to ask for recommendations, my Ophthalmologist helped me find my Hematologist, and my Hematologist is the one who got me to my Rheumatologist.  I see a lot of -ologists

You are going to have good days, and bad days. Hold on, and try to stay focused on the good ones.

This is your journey, it’s your life, you will find your way, it may not seem like it now, but you will. There is no right or wrong way to do this. Sure there are some better approaches and some things that should be avoided, but know that you are still you. You are still a person, and not just a disease/condition.

If you ever want to drop me a line to say hello, to reach out and talk, please don’t hesitate to contact me.

You are not alone!

Nicole

 

Printed Words Echo The Loudest

Up until this very morning, it has all been discussion between my doctors and I. Several weeks of hints to a diagnosis, hints of things to come, they have all been leading up to this moment. My joints have been telling a story for months now, between the swelling, and painful moments, the evenings spent curled up on the couch because I was in too much pain to move. The fatigue slid into my life, like a band of thieves stealing precious valuable moments, forcing me to slow down. The butterfly rashes, were finally officially titled as such, and could no longer be passed off as just looking rosy complected that day, now I seem to be forever lightly masked, even on my better days.

Today, April 1, 2014 Systemic Lupus Erythematosus appeared in print, for the first time, and is now officially in my medical record. You would think after hearing so much talk of it from my Hematologist, Ophthalmologist, Rheumatologist’s assistant, and especially from my PCP (we have talked a lot about Lupus)  it wouldn’t have affected me the way it did. I was expecting to see it in print this week, just not today, not from Dr. C, my PCP. Today it caught me off guard. It was one of the rare appointments where the word Lupus wasn’t actually spoken, we talked about symptoms and flares, but the word wasn’t mentioned.

It’s funny, I’ve thought long and hard about how I would feel…in that moment, when I saw those words for the first time, because I knew it was coming. I just forgot to consider it might happen today when I went for my weekly PT/INR Check with Dr. C. I simply forgot to consider it might happen like this, and just like that its all too real again, too fast, too sudden, and it’s something I can’t run away from and I have no choice but to accept it, learn to live with it and endure. To fight the good fight, and live life to it’s fullest. In that moment, words of several appointments played through my head, conversations with family and friends resonated loudly, I was saddened, angered at why all of this is happening to me, and even a little relieved all at the same time. Because at least with Lupus, they know what to do with me.

It worked out this way for a reason I know. After processing this for a few hours, I’m glad it was Dr. C that it came from. I have at least a little history with him. I will be meeting my Rheumatologist Thursday for the first time at my follow-up appointment. At least this way, I won’t be emotional in front of a doctor I’ve just met for the first time, because I still have an issue with crying in front of people I have just met. I am thankful to Dr. C for being the one to do this, he has unknowingly made the rest of this week a lot less stressful for me.

Dr. C said something at my appointment today on getting back to a point where I can focus on who Nicole is outside all of the medical stuff going on. This conversation was brought up because I told him I was at a point where talking to a psychologist/counselor would be beneficial, that things had finally calmed down enough that I was starting to process things and needed help. He knows I’ve found some amazing support groups relating to Antiphospholipid Syndrome and Lupus so he didn’t think we needed to focus on support that focused around medical conditions at this time. His words though…focus on who Nicole is, I just hope I can remember.

I know one thing that still remains the same as for who I am, my desire to help others. I will focus on that, and start seeking out ways I can do that. It will at least give me something to do with the energy and give me something to focus on.