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!





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

A Lifetime of Gratitude to Dr. D


I realize I threw many of you into the middle of this story. I’m sorry. I realize by doing so, I still have a lot of things that I haven’t explained that I need to, and I will in time I promise. The man pictured here, is Dr. D. He was my childhood Primary Care Physician from the time I was 6 weeks old. I was an oddball patient even as a child. Maybe that should have been our first clue.  He was my doctor for the better part of the 30 years I’ve been alive. True there was a lapse in my care after I moved from my hometown when I was 19, until I returned to his care when I started getting sick back in August. That was a decade long gap.

When I started getting sick, back at the end of July,  I knew he was the doctor to turn to. I knew he would keep me safe, and figure out what was wrong with me. I was right, he played a huge role in getting me on the right path to a proper diagnosis.

See a little back story, this man saved my life when I was 6 weeks old. My mom took me to see him because I was unable to keep my formula down, it was to the point I was not taking in nutrients and was starving to death.  He quickly figured out the problem and I began gaining weight, and thriving. That is how he became my doctor. He saw me through many other moments where my body did strange things over the years and got me through them.

So in August after developing dizzy spells, double vision spells, splinter hemorrhages under my fingernails, and a few other symptoms, I called my mom and asked her to get me an appointment with Dr. D. I was terrified and I knew he was my best shot at getting an answer.

Splinter Hemorrhage under my finger nail.
Splinter Hemorrhage under my finger nail.

By the time I made it to my first appointment with Dr. D I had developed those little lines under all of my fingernails. Essentially they were little lines of blood or little clots from the small vessels under my nails. They were one of the first clues that got us pointed in the direction of blood clotting disorders back in August. This was of course after Dr. D ruled out a scary heart infection called Bacterial Endocarditis as they also show up with that condition sometimes. They were one of many clues that pointed him in the right direction. Even with that I did not have a typical presentation of Antiphospholipid Syndrome. Most people who present with it, have strokes, heart attacks, DVTs. Those are all large clotting events. My presenting clotting event was a Branch Retinal Vein Occlusion. That is a small clot in one of my small veins in my Retina. A micro clot. It wasn’t diagnosed until October. The event actually happened at the end of August, but I thought it was a prolonged Migraine Aura. After it was diagnosed I immediately started Warfarin, I will be on it for the rest of my life.

At that point, Dr. D sent me to my first Hematologist, that will be a story for another day. Essentially that man Dr. G, ran a bunch of expensive tests that my insurance did not cover… and got me an official diagnosis. That was his sole role in my journey. The diagnosis he got me was Antiphospholipid Syndrome.

I started this post, with a picture from yesterday, I took my mom to her doctor’s appointment. She still sees Dr. D. So did I until the end of January. My insurance decided in the middle of January that I could no longer see him as my Primary Care Physician and that they would no longer recognize his referrals. That is how Dr. C became my PCP. So yesterday morning I got up, ate breakfast with my husband at 6:30am and got in my burgundy red blazer and headed to my hometown. It’s an hour and a half from where I live currently. Not too bad but its long enough of a drive that I anticipated it would make my joints a little stiff and angry. I stopped part way at a rest stop to stretch and use the facilities and got back in the blazer and continued my journey. I arrived at my mom’s (well grandparent’s and mom’s they all live in the same house), around 8:30 and spent sometime talking to them. It’s the first time I’ve really gotten a chance to talk to them face to face since I’ve gotten my full diagnosis of both APS and Lupus. They don’t really know how to approach me and I think are a little afraid to ask questions. I don’t want to overwhelm them, but I also want them to learn. So I will educate them a little each time I talk to them.

After hanging out for a bit it was time for mom’s appointment so we headed to Dr. D’s. Mom’s check up went well. Which was great news. She has diabetes and this was a check up for that. She sees him again in 6 months for that. At the end of her appointment he asked me how I was doing. I gave a real quick up date. Told him Dr. C finally had my INR semi stable, higher INR range, that my Rheumatologist  had diagnosed me with Lupus and that the plan was to start me on Imuran in May. He gave it is vote of confidence as for a good treatment option for Lupus. Then I thanked him for his role in getting me to a proper diagnosis and for all he did for me over the last few months, we both got a little teary eyed and then I asked if he minded if I got a picture of us together because he was an important person to me and always would be. Obviously he didn’t mind, as I got the picture. I was glad I got the chance to see him in person, and had the ability to say thank you. I needed  to be able to see him and say that in person. I didn’t get a chance to see him in January when my insurance dumped the need to change doctors on my lap. Dr. D is retiring in a couple of years, the medical field will lose one of the great old school doctors when he does. There’s something to be said for doctors like Dr. D. There’s not many left like him. While I didn’t always agree with his treatment approaches, or his diagnostic approaches, he is a damn good doctor, he was just old school in his approach, but that’s what he was taught in his day. You can’t fault him for that really. So with that aside, I owe this man a whole lifetime of gratitude.

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

Office on the 6th Floor

This morning I was awakened by the vibrating jarring sound of my phone as the alarm went off. The sound it makes when I forget to turn the ringer back up to its normal volume left. I groggily laid there contemplating going back to sleep while my husband got up for work, then I remembered I couldn’t this morning. I groaned as I moved my stiff body to the edge of the bed. Slowly I swung my sore knees over the edge of the bed and sat there for a moment trying to adjust to the sudden upright position. Sleepily I reached for my pill-box and opened the slot that said Thursday A.M. and took my morning pills, tossed them in my mouth and grabbed my glass of water. Swallowing I finished my glass of water and sat it back on my night stand. Not sure if my joints were ready to move I hesitantly moved to the standing position and tested them out. Okay, my knees were cooperating! Opening and closing my hands I assessed that at least this morning, my joint stiffness and morning pain levels were minimal. It was time to get ready.

I had laid out my outfit the night before. A light teal tank top, navy shorts, and my tennis shoes. Casual but it still looked nice enough that I didn’t feel under-dressed to be meeting someone for the first time. It’s funny how much us women put into these types of things, no matter the circumstances, because first impressions do after all leave their mark. After dressing I joined my husband in the kitchen and we chatted for a few before he headed off to work. After kissing him bye, and telling him to have a good day. It was time to fix my hair. A little water and coconut oil insured my curly mess stayed presentable.

A few minutes later at 7am I sent our roommate Doug a text to wake him up, because he was accompanying me today. He got up and we did our usual morning routine and got the pets situated, and I took my second part of my morning meds, Plaquenil, the one that requires food to be in my stomach. Afterwards I brushed my teeth, looked myself over once more and then started going down my checklist. Medications packed, yes. Tablet packed, yes. Paperwork packed, yes. We were ready so we decided to leave well ahead of schedule. Dr. L’s office is in a weird part of town, near two big hospitals so traffic can be a crapshoot. We made excellent time which means once we got into the parking deck we got to sit there for a while, which was fine because my stomach was a big ball of nerves.

At about 8:40 we decided to head on up to Dr. L’s office. It’s the second time we have made this journey, to the 6th floor so this time we knew which door to go into, and we expertly made our way to the back elevators we needed to be able to get there.  Nervously I stood by Doug on our ride to the Office on the sixth floor. Once there, I signed in and waited for them to finish checking me in. As I sat in the waiting room I looked around, wondering what each person was there for, myself, I was referred to their office because I needed a Rheumatologist. At my first appointment I met Heather, the Nurse Practitioner. She assessed me, ordered labs, and said Oh My Goodness…A LOT. That was a month ago. The nervousness I felt today was much worse than what I felt a month ago. Today I was meeting my actual Rheumatologist, the man himself.

After what seemed like an eternity, okay really a whole 3 minutes, the receptionist called me up to take my co-pay and sign me in. I then took my seat back, facing out into the hallway where you can see the elevators, and the waiting straight across into another office’s waiting room. There is also a wall of windows, but I don’t dare get close to them because Hello! We are six floors up and I do not want to fall through one of those onto some unsuspecting person walking around in the lobby!

My appointment was scheduled for 9:15am and they took me back pretty much right on the dot! Impressive!  I handed Doug my tablet and sat my purse down, the friendly nurse weighed me, took me to my room, reviewed my medications, went over what to expect when Dr. L came into the room, took my blood pressure and then handed me this dry erase ‘form’ with questions about various activities and their difficulty level and how much pain they caused me during the last week. I quickly filled it out and sat it to the side.  Doug and I talked and joked around while waiting and a few minutes later Dr. L entered the room. He is the only doctor that has actually made it into my exam room looking like his staff photo! I was amazed. I told him I was excited to finally get to meet him, and that my Hematologist Dr. M had spoke highly of him and told me I was in good hands.

He then went over my lab results. First we talked about my Antiphospholipid Lab results and said that this second round of tests confirms that I have definite APS (he kept calling it APLS which is another acronym commonly used for it), and that I will be on anticoagulants the rest of my life. This I already knew and wasn’t too concerned with these results. Then he began talking to me about the Lupus related results. See here’s the problem. All of my Lupus labs, came back negative, and that seems to be a pattern with my family members that have been diagnosed with Lupus, it takes them years to finally have positive lab work, and I explained that to him. We went back over my symptoms, back through my family history, over various illnesses that were present on both sides of my family.There is Lymphoma, and Leukemia, but he didn’t seem to think I was showing signs of those at the moment, my symptoms simply do not support those. We talked extensively about Systemic Lupus Erythematosus being heavily present on both sides of my family. We talked about my mother having Rheumatoid Arthritis,  and that my aunt died when I was 17 of complications from Autoimmune Hepatitis. My family is riddled with Autoimmune issues, and unfortunately a lot of my family members have been affected for many years without a diagnosis because doctors wouldn’t treat them without positive lab results. By the time we went through all of my symptoms and family history he had two pages of notes scribbled down. He handed me a gown and stepped out of the room.

I changed into the gown and had Doug tie the strings in the back. I am so glad he has been able to go to my appointments with me, especially the ones where I have to change into those horrid scratchy, awkward exam gowns! I then got on the exam table and waited for Dr. L to return. He brought up this diagram of a body that had x’s all over it on the computer screen beside the exam table. Then he began doing what I think all Rheumatologists love to do, the squishing.  He  squished my various joints, and each time I said ouch, or that’s tender he marked an x red. I commented at one point,  ‘Hey today I get to be a robot on the computer screen today!’ It made him laugh. Good, because If I’m going to have to see a doctor on a regular basis, we are going to have to be able to laugh.  He squished my finger joints, my elbows, my neck, my shoulders, my hips, my knees. My knees and fingers are what got marked red today. Then he stepped out again so I could change back into my clothes so he could come talk to me some more.

When he returned he said that he was going to call a specialist at Duke to ask some questions regarding my case, and if there could be some genetic reasons behind why Lupus wasn’t showing up in my lab work. Oh, awesome, my Specialist is calling another Specialist at a Nationally acclaimed hospital to discuss my case. That has to be good right?  He went on to say that he wanted to run labs to make sure I could metabolize Imuran and that if I could he wanted to start me on it at my next appointment. The appointment wrapped up with him saying he would send a letter to Dr. C with his findings and treatment plans which are Definite APS, target INR range 3-4 and Systemic Lupus Erythematosus in which he recommends decreasing my Plaquenil dosage to 200mg a day from 400mg a day, adding Imuran as long as I can metabolize it and treating the symptoms as they come. He ordered more labs, to be sent to an outside lab to see if their lab returned different results, because, hey why not? He said it didn’t matter though. His diagnosis still stood regardless of what my labs said. We had been with the doctor for roughly two hours.

So there we were in that sixth floor office, and for the second time this week, I was handed the same diagnosis, Systemic Lupus Erythematosus.