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!

 

 

 

Advertisements

I’m still around, it’s just been a crazy month. Things that happened while I was away that I’ll catch you up on soon:

  • 5 year Wedding Anniversary
  • Battle with Bronchitis
  • Another trip on the INR rollercoaster
  • More praise for my amazing PCP and his nurse
  • Life happenings of the non-medical variety
  • Migraine from hades
  • Brave Heart Award Nomination
  • Notes from Therapy

 

I’ll make more regular posts in September, I promise. Hard to believe summer is drawing to a close already isn’t it? I for one am stoked! Autumn is my favorite season so I’m a little excited and counting down the days!

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

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?

 

 

 

Always At the Doctors

Always At the Doctors

I’m always at the doctors. Okay that’s an exaggeration. I do have a life outside of the confines of my numerous doctor appointments. There really is more to my life than Checking in for an appointment, talking to nurses, and doctors, and scheduling the next appointment. There is! It just seems like I’m always at an appointment right now. Today was my weekly PT/INR check. It is usually a quick early morning appointment I have with the Nurse Practitioner at my PCP’s office. This appointment was a little later than my usual appointments. It took her a little longer to get into my room, but it seemed like all the doctors were having busy mornings as a few of them were marked as being behind schedule on their little schedule tracker board in the front when we checked in. Doug came with me to my appointment so we entertained ourselves while we waited and started taking random pictures of things.  Here I am, at least my shirt and hair were cute today! Goofing off while waiting for the NP. #antiphospholipidsyndrome #aps #atleastmyshirtiscute #bloodclottingdisorder #hughessyndrome #lupus #lupie #lupustruth #lupuswarrior #lupies #autoimmune #autoimmunity #april #invisibleillness #alwaysatthedoctor #chronicillness #butyoudontlooksick #sle

Then there are these buttons in every room, and any time they leave us alone I’m so tempted to start pressing them (I am not an impulsive sort or I would’ve already pressed them), because they control the lights on the outside of the room above the door, they are a code to signal various things to the doctors and nurses.   I always want to push these buttons when I’ve been in the exam room too long. Cuz I know they are blinking a code to signal something…. So if I change what they were signaling…. Lol #antiphospholipidsyndrome #aps #autoimmune #autoimmunity #lupus #sle #lupie #lupies #alwaysatthedoctor

The nurse pushes them to signal to the doctor the patient is ready. Then if the doctor has to step out during an appointment he pushes them to signal something different. My appointments tend to be longer than average when I see my PCP so they tend to be blinking really fast when I step out into the hallway. Awesome.  I want to learn their code so I can communicate with them. I’m there often enough, I feel I should be able to.   PT/INR day! Waiting for the NP to get back to my room for my appt. #antiphospholipidsyndrome #aps #hughessyndrome #bloodclottingdisorder #autoimmune #autoimmunity #chronicillness #invisibleillness #butyoudontlooksick #lupus #sle #lupie #lupies #spoonie #spoonies #warfarin #anticoagulant

Pictured above is the kit that is in all of my INR appointments. It’s not the SAME one every appointment but you get the idea. It’s the same set up. Gauze pads, and INR machines literature on the left, little  blue and white finger pricker doodads in the bottom right, INR machine, test strips and alcohol swaps in the top right. It is a fairly simple process and I could do it myself, and maybe someday if I can get a home machine that my insurance covers, I will. First the machine is turned and the test strip is loaded. Then the process flows fairly straight forward and quickly. You only have a few seconds before the test strip times out.

Getting ready to get my finger stuck! #antiphospholipidsyndrome #aps #hughessyndrome #autoimmune #autoimmunity #lupus #sle #lupie #lupies #alwaysatthedoctor #bloodclottingdisorder #warfarin #anticoagulant

It consists of her sticking my finger, putting my blood on a little test strip and the machine reading it, to see if my blood is ‘thin’ enough not to clot improperly but not too ‘thin’ as to cause bleeding issues. Finally the NP arrived to do my INR. #antiphospholipidsyndrome #aps #bloodclottingdisorder #hughessyndrome #autoimmune #autoimmunity #lupus #sle #lupie #lupies #lupuswarrior #lupustruth #anticoagulant #alwaysatthedoctor #warfarin And finger is stuck and test time!!!! #antiphospholipidsyndrome #aps #hughessyndrome #bloodclottingdisorder #lupus #sle #lupie #lupies #butyoudontlooksick #invisibleillness #chronicillness #autoimmune #autoimmunity #alwaysatthedoctors

The number generated by this little machine dictates the dosage of Warfarin I take for the next week.  This week’s number was 2.9. My range is actually 3-3.5 and may soon be officially 3-4 but she thinks 2.9 was close enough so left my dose the same. So I’ll take 15mg every night again this week. Yes, I take 15mg of warfarin a night, every night. That is a MONSTER dose of warfarin. Most people take very small doses of warfarin, but then again most people on warfarin, have much lower INR ranges and are not dealing with the autoimmune issues and other issues that I am battling. INR 2.9 today. NP moved my 4/29 appt to see Dr C to next week so we can go over notes from my Rheumy appt and start working on my immunizations that need to be updated before I can start Imuran. #antiphospholipidsyndrome #aps #alwaysatthedoctor #hughessyndrome #lupus #lupuswarrior #sle #lupie #lupies #spoonie #chronicillness #invisibleillness #autoimmune #autoimmunity

This appointment also triggered a change in my follow-up appointment with Dr. C that was scheduled for the end of the month being bumped up to Monday. This was because I mentioned that my Rheumatologist may want to start me on Imuran and that would require me to get my vaccinations updated and would need a TB test. So the NP had them change my appointment date. So I will see Dr. C next week for a follow-up, and to have my INR checked. I even let them know it would need to be a long appointment as there were a lot of notes to go over. So let’s see, next week will put us 2 weeks into April, that will be the second time I’ve seen Dr C this month, and that will be appointment number 4 for this month. Oh and tomorrow…. even though it’s not my appointment, I will be going to a doctor’s appointment with my mom, she asked me to go with her. I’ll see my old PCP, but that’s a story for another time.

There’s a DJ In My Joints

After months of pain from Lupus, the first moments of relief, were like being at a nightclub and stepping into the night. Body is numb from the jarring sound but you don’t notice, until it’s gone. That’s chronic pain, a never-ending nightclub playing through my body and I CAN’T LEAVE.

Weekly Writing Challenge: Fifty

When Summer Comes

Springtime means looking forward to Summertime. I can’t say summer has ever been my favorite season. This year,I am filled with even more apprehension. It’s my first summer with my diagnoses. This time last year, I was still healthy, I had no idea in a years time I would be sitting here at my computer, writing blog posts about having Lupus and Antiphospholipid Syndrome. Last summer, was my first summer with symptoms, but I had no diagnoses. These will be my first hot, humid, southern, god awful summer days knowing what is wrong.

For those of you who live in the south, you know what I’m talking about. The summers here in North Carolina, can be unbearable. Temps can be unbearable and days can start off above 80. Add in the brow drenching humidity and there are days we just don’t venture outside unless we absolutely have to.  It’s the type of heat you can see when you look out over the horizon. You see it rising in waves. Swelling and engulfing, waiting to swallow everything.

Winter was painful, the cold hurt me with a pain in my joints that I can not adequately describe yet. Someday I will find the words. Someday I will tell you of this pain. I am a little hopeful that Summer will be less painful. I will have been on Plaquenil for a few months by the time Summer hits, and as long as the tests come back, I will most likely have started Imuran by then as well. So there is some hope riding on the warmer months.

I don’t know how my skin is going to react. Before now I use to tan beautifully. Let me rephrase that, I am olive complected, because I am part Cherokee, not because I lay out in the sun. Now when I go out in the sunlight, I develop rashes triggered by the sun, and my tail tale mark of a lupie shines across my cheeks, the ever so noticeable butterfly rash. It is true that not all people with Lupus have the butterfly rash, but I was one of the ones that was marked. As though my body decided to make it known to the world that ‘Hey! This woman has LUPUS!!!!!’  It’s okay, I’m not ashamed of it, and more often than not, I don’t wear makeup, I’m just not a makeup person, especially in the summertime, because of the humidity.

That’s enough of the things that have me a little apprehensive about summer. Now for the things I forward to for each summer:

  • Our 5 year wedding anniversary is coming up in August.
  • Warm summer nights, because this means on Friday nights when we go out for dinner and coffee with friends, we can take advantage of outdoor seating. I love sitting outside. It makes me feel more connected to the nature, even when we are in the city. Being a country girl, this is really important to me. It feeds my soul.
  • Fireflies, they bring back such precious memories from my childhood. From chasing them when I was a small child and gathering them. To just laying and watching them as I got older.
  • Stargazing, this has always been a favorite pastime of mine. It relaxes me and soothes my soul.
  • More time at the parks, warmer weather hopefully will mean getting out of the house more, and taking advantage of the parks in our area. There are some great parks here.

 

Daily Prompt