Little Victories

"Success is made of little victories."  What's your little victory today?: Helpful Quotes
(img via Nomadic Lass http://www.girliestgeek.com)

Today provided cause for celebration. Today for the first time since the end of October my INR is back in range!!!! It was a solid 3.3! Today Dr. C said “See you back in a MONTH”! Today I sighed the largest sigh of relief I have sighed in a long time, simply because of a test result. This may also mean we have figured out the new dose of warfarin I will be on thanks to the manufacturer changes and hopefully when we recheck it in a month that will prove us right.

While at his office he also repeated the freezing of my wart that is hanging out on my right thumb. First time he froze it he used the canister of Liquid Nitrogen. This time it was old-school style with LN in a Styrofoam cup and a Q Tip applicator.  I don’t recall my skin sizzling during the first freezing. Was rather fascinating, or at least it was to me, but I’m a bit of an oddball when it comes to medical procedures. I do work on the fringe of the alternative medical field and therapeutic realm so I guess it isn’t all that weird. After the area around the wart heals from the LN treatment for a couple days I will continue with the adjunct Duct Tape Treatment that Dr C had recommended after the first freezing.

Talked to him about my last appointment with my Rheumy, the angry email that resulted due to the dreaded ‘roid’ rage that I sent my Rheumy and the fact that even though today is the last day of my Prednisone taper, I am not fully over the flare symptoms. So he recommended that that I email or call Dr. L and ask his opinion on extending my Prednisone or just relying on my at home treatments for my symptoms. I emailed, I’m still waiting on a response from Dr. L.

At least we had a small victory today, I rejoice in the small things and celebrate those every chance I get.

-N

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Just book it, we will figure it out later

Here we are in March already. Time is flying and I blinked somewhere back in January and lost an entire month. The good news is, I didn’t lose an entire month to Lupus. Nope this time I lost it to normal life! I lost it to my studies of Reflexology, to being productive and just busy.

Things are going reasonably well for me right now. I’m about halfway through my certification program and I should be at a point of accepting clients by June. I’m rather excited about this. I would be lying if I tried to say I didn’t have some anxiety about how my body is going to hold up when I start working again. I will be in a supportive office with other amazing therapists and I know it will be an amazing experience though.

I was first introduced to Reflexology as a teenager by my aunt, who passed away from Autoimmune Hepatitis, so I feel rather passionate about my connection to this modality. In a way it is a way for me to keep her memory alive and honor her. I remember many a conversation with her about various reflex points and how they could benefit me. Especially the ones for migraines and nausea, as I have suffered from migraines since I was 11. As you can imagine my studies are bringing back some wonderful memories.

As far as health wise I had a small flare in my symptoms at the beginning March due to the bipolar weather we have here in North Carolina. The hot the cold, hot the cold weather pattern cause me a lot of pain in my joints and a few days of a continuous migraine. Luckily I was able to skip the round of Prednisone this time and just take a shot of Toradol and Phenergan to knock it down enough to get through. My INR has been amazing stable though, and in range. We’ve spaced my check to every 3 weeks now. That means on average I’m only going in 1-2 times a month now for those checks. It has been amazing, and such a change than every 2 weeks. I’ll enjoy this while it lasts!

Therapy is going well. She keeps reminding me I’m doing extremely well and that I can space my appointments out to 3-4 weeks but I honestly think keeping them at every two weeks is what is keeping me in the space that I am emotionally/mentally. Knowing I have that outlet, and safe space where I can go and get it all out every couple of weeks. So for now I’m going to continue seeing her every two weeks. It’s working, it’s not broken, why try to fix it.

Life is overall good. Busy, and never seems to slow down but good. I still have to take momentary pauses though when my body reminds me to. That’s something I’m not sure I’ll ever get use to. The days where I’m tired for no reason other than it’s just a brain fog, fatigue ridden lupus day. My time out days. I’m learning to use those for constructive things though. For now I use them for studying and catching up on small tasks. I’m not sure how I’ll handle them once I start seeing clients. But as the running joke at the office goes “Just book it, we will figure it out later.”

6th Floor Office Appointment Notes.

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!

2014 The Year in Review

Wow guys, It’s hard to believe that we are sitting here and it is the last day of the year! I have been doing a lot of looking back this past week over the last year and I am simply amazed at the last 365 days of my life. I know it would be insane to try to do a complete capture of it in one post but I figured it would be fun to do a post where I try to highlight a few moments. Thanks you to all of my readers and subscribers for being along for the ride this year! I look forward to another year of blogging and telling my story next month. Living with chronic illnesses is always unpredictable and I don’t always post as regularly as I want to. Sometimes this is because I’m feeling unwell, other times it is simply because I’m feeling amazing and taking that opportunity to enjoy life while I can. One of my resolutions for 2015 is to try to post a little more frequently though and to stay a little more connected with my readers. Feel free to poke at me if I go missing for too long guys! 

2014 In Review It’s a little long, but It’s a list of a whole year!!!!

January (Prior to starting Triumphant Wings)

  • Began Plaquenil/Hydroxychloroquine.
  • Found current Hematologist, Dr. M.
  • Antiphospholipid Syndrome Diagnosis was confirmed.
  • Switched PCP’s and became a patient of Dr. C’s. Honestly one of the best decisions I ever made with my healthcare. They take such good care of me at their office.
  • INR was raised to 2.5-3.5 by Dr. C & Dr. M.
  • Look back at old posts on FB and such I was still pretty emotional over my APS diagnosis. I was still in limbo with part of my diagnosis, and looking for answers and still in a pretty bad flare  that I had been in since August 2013.

February

  • Dr. M ruled out adrenal failure and problems with my adrenal glands.
  • It snowed, while pretty and the most snow our area had seen in a few years, this came with the price of worsening pain and swelling in my joints. This led me to finally accepting the fact I needed meds to deal with the pain.
  • I made that appointment with Dr. C that led to pain relief. I told him my issues concerning my dad and pain medications. I cried my eyes out at that appointment, and he understood, and gave me options for relief. A step in the right direction.
  • We were already throwing Lupus around at appointments but the official diagnosis wasn’t in yet.
  • I was starting to appreciate small things again, which was the first sign that my stress level was receding finally. I’ll always remember the first couple of sunrises that seemed beautiful again and not foreboding. It is the small things guys, always appreciate the small things.
  • Had the last Retinal “TIA” that I have experienced on Feb. 7th after my INR fell to 1.8. This is HUGE being prior to switching to Dr. C’s care, raising my INR and such I was having them every few days. I’m now sitting here a week shy of 11 months of being clotting episode free!!!!! (Aside from some tiny micro clots under my fingernails…which I will more than likely always get from time to time due to having APS and Lupus).

March

  • My friend Jenica gifted me a necklace that has a seahorse (real) in a little glass jar. Symbolic to me because I dreamed of seahorses the entire short pregnancy before I miscarried in May 2013.
  • Dr. C decided my INR would be better in the 3-3.5 range. I completely agreed and that is where it has been since. I have felt much better since we have been keeping it in this range. Granted it falls out of this range during flares and for other reasons but if we can keep it in this range as our baseline I feel a lot better. Not every patient with APS benefits from a higher INR range, but I am one patient that does!
  • I had my first Malar (butterfly) Rash that was confirmed by a doctor. Well actually two doctors, and two nurse practitioners, included one that is the PA of my Rheumatologist.
  • I had my first appointment at “The Office on the 6th Floor”  (my Rheumatologist’s office) It was with his PA, she ordered a bunch of tests, and said that she was pretty sure I had Lupus, even if it didn’t show up in my lab work.
  • Started cooking more meals at home again, which means I was starting to feel better. I had been on Plaquenil for about 3 months at this point.
  • End of March came a pretty significant flare, with one of the worst Malar rashes I have experienced thus far.
  • I also started Triumphant Wings on March 31st!!! So a lot of things from this point will be a recap from April through the summer months. I’ll try not to bore you guys too much.

April 

  • SLE/Lupus appeared in my medical history for the first time in print. Significant milestone right? You can read about that appointment in the post Printed Words Echo the Loudest. I also quickly got an explanation of Seronegative vs ANA positive. UCTD and my favorite one that is used when describing me by my Rheumatologist so far is ‘not yet diagnostive Lupus’. Basically I have Lupus but my ANA is still negative at this time. My other labs, well they aren’t positive enough. I still meet enough of the other criteria to be diagnosed with SLE though so that is why I am being treated and diagnosed. Confused yet? yea Lupus is not a textbook disease and sometimes it is a tricky one to pin down. Dr. L is concerned that when my ANA does start returning positive things are going to be really bad, so he wanted to get in front of things. I’m blessed with a team of very smart doctors. Blessed I tell you!
  • I met Dr. L for the first time in April. He also ordered labs to make sure my body metabolized Imuran properly so we could start me on immunosuppressants.This was the second time SLE was added to my diagnosis the same week. You can read about that on the post Office on the 6th floor.
  • A dear friend of mine passed away in April. He was a long time suffer of Chronic Illnesses, and had suffered from a number of complications from birth. He was truly an inspiration and someone who always took time to enjoy life to the fullest.
  • I got a chance to say thank you to the PCP that took care of me when I first got sick in 2013 and had been my PCP when I was a child. I had to leave his care due to insurance changes and miscommunications with his nurse led to my abrupt departure from his care instead of the gradual departure change over to Dr. C’s office that I had discussed with him. Nonetheless the change was finalized by early February and I have been well cared for since.
  • Remember when Dr. C had the student Dr following him (Appt with Dr. C and the Student Dr. and The Expected-Unexpected Reaction to Vaccines), and I got the Pneumonia & Meningitis vaccines? Remember how I had to go back the next day because they spun me into a crazy flare? Yea I laugh about those two visits now but when they actually happened I was pretty scared.
  • I started Imuran/Azathioprine in April, ahead of schedule due to this flare. That also means that the test Dr. L ran returned that I was able to metabolize it, I’m a low metabolizer of it so we have to monitor my dose of it and I’m on my max dose of it, 100mg, that’s it. He is very hesitant to try any higher than that.
  • April 27th I began seeing my Therapist. This was a HUGE milestone for me. It has been an amazing step in my self-care and has done wonder in my emotional state of mine. AL has a lot of experience helping clients deal with chronic illnesses and her office did an exceptional job pairing me with her! I started seeing her weekly and now I see her every 2 weeks. I’m not going to mention every appointment with her, but I want to emphasize the importance of her role on my healthcare team. Without her, I do not think I would have made the strides in acceptance and processing the emotional side of being sick. I am forever indebted to her because of this. It is an ongoing and beneficial relationship and I still see her twice a week.
  • Warmer temps meant pretty flowers, baby birds, and more time spent walking at parks from my posts on Facebook, instagram and such.

May

  • Lupus Awareness Month! It was the first ever awareness month I took part in. So there were a lot of posts that month to my blog, fb, and instagram that dealt with Lupus facts, and my contributions to raising awareness. It was a lot of fun and I plan on taking part in LAM again in 2015.
  • I also hit a point in May where I finally accepted that I had to listen to my body. That I couldn’t just keep pushing through the pain and fatigue. That my body felt that way because it was sending me a message. Since I have started listening to those signals, I recover from flares quicker, I don’t get so sick during flares, and I can generally stave off flares from going full-blown if I start resting and really pay attention to my body.
  • I wrote a Poem called Lost which deals with the loss of one’s self when faced with chronic illness. It remains one of my most popular posts to date and One of my favorite poems that I have written to date.
  • I broke down and bought the first of my wide-brimmed hats to protect me from the sun.
  • Several of my friends, family and even my PCP, as well as myself wore purple on Put on Purple Day this year.
  • I had a follow-up visit with Dr. L, who decided that if we wanted to confirm my SLE diagnosis I should see a Dermatologist and have skin biopsies taken.
  • I started accepting that one of the biggest issues I have with all of this is the sense of loss of control.
  • I remembered with a heavy heart the miscarriage I had the previous year on May 29th. The loss of my child is not something I will ever forget.
  • Saw X-men Days of Future Past in theatre. Awesome Movie. Well if you like those types of movies anyways. Which I do!

June

  • I got my first Medical ID bracelet from Endvr, I now have two! I still need to write a post on them. That is on the list to do early in 2015!
  • I started exploring how to make Lupus and APS just be a part of who I am, instead of defining who I am. I have been accused several times of allowing them to define me. What people fail to realize is how bad things were in the beginning. They weren’t there for the worst of it, they didn’t experience the things I did. They didn’t spend weeks trying to figure out what was wrong with them, then months trying to figure out treatments that were effective.  It’s okay. I forgive those people and their accusations. They also do not understand the process of being diagnosed with a chronic illness and what one goes through when that happens. It’s as individual to a person as the grieving process is. We are respectful of that process and I wish more people were accepting and understand of the process people go through when they first get sick and learn they have a life threatening and life altering disease. Especially two at the same time. It’s damn overwhelming and I think anyone in there right mind would probably check-out for a bit while trying to make sense of it all. I did. I also picked myself back up when I got to a point I could and have begun moving forward. It is a process. It will always be a process. There will be glitches along the way, and I will deal with them as I have to.
  • I saw Dr. M, my Hematologist for the last time in 2014. He cleared me and told me that my care was better off with Dr. L and that unless I had another clotting event or surgery he was just a consultant pretty much. Dr. C has called him a few times with questions but I won’t see him again until June 2015. I owe him a big thank you. He got me to my Rheumatologist who has turned out to be a pretty neat guy. We have differences in opinions and ways of doing things but all in all Dr. L is the kind of doctor I need in charge of my autoimmune issues. (He’s  got immunities!) My best friend recently made me watch that movie for the first time…. Bonus points if you can tell me the name of it?!?
  • I started working with Cognitive Behavioral Therapy and learning my Distorted Cognitions and how to utilize CBT to squash my Anxiety. This has been one of the best approaches to getting my anxiety in check. There are still a few problem areas but CBT has definitely done a world of wonder to getting me to a calmer state of mind.
  • Flare in June, INR fell like a brick, dizziness, Prednisone, extra doctors appointments, Dr. C phoned Dr. M, yea that was a crazy flare. I felt like poop. It was all because I spent extra time under the big fall o fire in the sky. Craziness I tell you, pure craziness.
  • I saw Dr. B, my ophthalmologist for my check up. My Retinal Vein Occlusion was completely healed. While I will always have a blind spot where the clot starved the retina of blood flow, it was good to hear it had healed and didn’t have to be closely monitored. I had the testing done that needed to be done since I am on Plaquenil as well. All was good. I do not see Dr. B again until July 2015. He is another doctor I owe a world of gratitude to. He set me on the path to a proper diagnosis, recommended Dr. M to me, and vetted Dr. L and assured me that I was in good hands. Not to mention he is a top rated Retinal Specialists. Yep I’m that lucky!
  • We saw Transformers in theatre in June!

July

  • Enjoyed my first Appointment free week of the year. We celebrated by living a normal routine, and visiting a lot of parks it seems. We are boring people have I mentioned that?
  • Went to the Color Festival. It was hot, there were colors everywhere. It was in the middle of a flippin’ cow pasture. There was NO MEAT at this event.
  • I started baking cupcakes and other baked goods like crazy in July.
  • Saw Dr. W, my Dermatologist for the first time. He’s like a 12-year-old trapped in an adult’s body. Super high energy and excited about everything! Still waiting for a rash worthy of biopsy though.
  • Dr. L had Google Glasses at this appointment. The geeky side in me was so excited. I wanted to put them on! Maybe one appointment I’ll ask!

August

  • Mellow and I celebrated our 5th wedding anniversary. We celebrated with a day trip to the mountains of NC and to a cheese factory that we like to visit.
  • Was sick with Bronchitis for half the month. Recovery for the second half of the month. INR was wonky most of the month. Lots of Appts at Dr. C’s office because of this.
  • Robin Williams’ suicide happened during this time. Being sick and ordered to rest as much as possible in the wake of this event meant I had a lot of time to think back through my Dad’s death all over again and a lot of time to mourn the loss of one of my favorite actors.
  • Saw Guardians of the Galaxy and Into the storm. Guardians of the Galaxy was awesome. Into the Storm was an extremely stressful and intense movie. Much more so than we were prepared for going in.
  • Made a new batch of laundry detergent. (8/25) Last batch lasted 2 years! Woohoo!

September

  • I picked up my crochet hooks and began crocheting again. Another huge milestone. My fingers are working much better again! A lot less swollen and can function properly, with a lot less pain. It makes hobbies such as crocheting much more enjoyable! This is one of the reasons I disappeared toward the end of the year. I was busy crocheting Christmas Presents!
  • I got my Flu Shot for the year! I was one of the first people to get it when it came available at my PCP’s office because I am on immunosuppressive therapy and Plaquenil. It was the first Flu Shot I have gotten since I worked in Early Childhood Education. I am required to get one every year now.

October

  • I hit the 1 year mark of my Branch Retinal Vein Occlusion, Dr. L becoming my doctor, and of starting Warfarin as my anticoagulant. Milestone Jackpot!
  • I saw Dr. L for the last time in 2014. He ran labs. My Kidney Function Tests were completely normal when Dr. L tested them! First time since they started testing abnormal in August 2013. It was such good news to get, I felt I needed to throw a party to celebrate. I did not however, throw a party. I see Dr. L a few days after my 31st birthday in January 2015.
  • Doug brought home apples from New York. We made a lot of things from said apples. Apple cobblers, Apple pie. We even made several quarts of Applesauce.
  • Several crocheting projects were started and completed during the month of October.
  • Several baking projects were also completed and consumed.
  • I dyed my hair a color called Chocolate Cherry. It is a deep burgundy brown color. A wonderful fall/winter color.

November

  • More crocheting and baking projects.
  • Flare. Prednisone. Extra trips to Dr. C’s office.
  • Thanksgiving was a household event this year. Hopefully next year I will be fully back up to speed and able to invite people over like we use to. If not I’m not going to beat myself up over it like I did last year. I’m giving myself space to just be, and to be where I need to be at the given points in time.
  • Mellow’s Birthday, Celebrated with cupcakes, time with friends, and gift giving.
  • I made Dr. C’s office cupcakes to say thank you for all they have done for me this past year the week of thanksgiving. I had an INR appointment so it was convenient. A wise old man (my grandpa) once told me to always take care of those that take care of you, and that little acts of kindness and gratitude go a long ways in this world. So I always try my best to show those that take care of me how much they mean to me. Especially when they go above and beyond time and time again. I didn’t feel that a simple Thank you was enough this year, so they got super special Pumpkin Cupcakes.

December

  • Took time to remember the passing of my dad, he has been gone 3 years now.
  • Crocheted like a mad woman up until the last-minute possible to get gifts finished!
  • Put up a tiny Christmas tree this year because we weren’t sure if Timber (one of our dogs) would eat our other tree and the ornaments.
  • Baked Eggnog Cupcakes for AL’s office to say thank you for all they have done for me. I also gave her a scarf for Christmas.
  • Took Dr. C and Cindy scarves that I had crocheted them to my Dec. follow-appointment on 12/23.
  • Get to cut my Blood pressure medicine in half for the next month to see if we can start considering decreasing the dose officially or stopping it all together. So far my BP is staying really low. Like clinically low at times. I know this because my grandparents bought me a blood pressure monitor for christmas so I’ve been taking my BP periodically throughout the day every day since Christmas.
  • Spent Christmas Day with my family back home. Loved seeing everyone. Then we came back home and got back to the normal  life the next day.

So that’s it. That’s the Snapshot view of 2014. Sorry it was long so I think it is acceptable. I will try my best in the next week or so to post a list of my resolutions, goals, and thoughts for 2015.

Good News from the 6th Floor Office

Last Monday, October 20th,  I had my October Follow-Up with my Rheumatologist, Dr. L. It was a late morning appointment. I recalled vividly the checkout lady cheerfully telling me that it was ‘the best time’ to have an appointment at their office. I have to say I disagree with that sentiment. Getting into the parking deck was anxiety inducing. The two cars in front of us, seemed to be lost and just stopped, dead in their tracks causing a back up at the entrance. Have I mentioned I’m not a fan of parking decks/garages to begin with? Yea, I’m not. We managed to get around them and went a different direction from the lost ones to find a parking space. Then we headed to the first elevator. Down to the first floor lobby of the medical plaza, that is also connected to a large hospital, we made our way. Then across the lobby and to the second set of elevators so  we could go up to the sixth floor waiting room.

I was excited and rather anxious. It takes me a while to get use to a new doctor and get comfortable. Dr. L also is sort of the one that calls the shots as far as my treatments and such goes. He is also the one that runs the bigger, more in-depth, and as you can probably guess scarier tests at this point. Granted most of the time they come back as we expect them to and there are fewer surprises at this point than there were a few months ago, but still Rheumatology appointments are a bit stressful still. Not to mention there is the whole mess of having my joints squeezed and pressed on, which sometimes is quiet painful and uncomfortable.

A different nurse processed me this time. She seemed new and I hadn’t seen her before on any of my prior visits. While going over my medications she struggled pronouncing the two medications Dr. L prescribed to me AzaTHIOprine (Imuran) and Hydroxychloroquine (Plaquenil). I feel if you are going to be a nurse at a Rheumatologist’s office, you should quickly learn the medications you are going to be encountering. Those two are fairly common and I know Dr. L prescribes them frequently, as he told me they are two that he relies on a lot. Other than that minor detail, I liked her a lot. She was personable, considerate, and listened to what I said. She also made notes of everything I said and not just parts of what I had to say for Dr. L. After she was finished with her part of the appointment she stepped out.

After a short wait Dr. L came in and we went over how the last 3 months had been. He asked if I had gotten my flu shot yet, and I told him yes and provided him with the date. We talked about my last flare, triggers, and what I was doing to keep my symptoms at bay. He was pleased to hear that things were improving and we both agreed that there wasn’t a need to add any new medications or to increase the dosage of either medication. Which with Imuran, we really can’t because of how I tested as a metabolizer of it back before we started me on that medication. I’m pretty much at my high dose already. It was a short appointment and he sent me to the lab for some routine tests to make sure my body was tolerating Imuran properly still.

Before going I asked him about Antiphospholipid Antibodies and their significance. The first time I tested positive for APS I tested positive for Anticardiolipin Antibodies, the second test  I tested negative for Anticardiolipin antibodies but positive for antibodies against Beta 2 Glycoprotein. I wanted to know if that meant my clotting risk was lower, which was what my Hematologist has indicated. Dr. L told me that wasn’t the case, that B2Gl was a subset of Anticardiolipin and both were antibodies against phospholipids which put me at an increased risk for blood clots. I relayed that information to Dr. C, my PCP the next day at my routine INR check.

Thursday I received an email from Dr. L and it was one of the best emails I have received in a while. Not only is my body tolerating Imuran perfectly fine, my kidney function has returned to normal! For the first time in over a year my kidneys are functioning 100% normal! Thank goodness! I can only assume that the combination of Plaquenil and Imuran are doing the trick at keeping my immune system from attacking them or whatever was going on that had my creatinine elevated for several months.

I see Dr. L again in January, a few days after my 31st birthday. I’ll have a new list of questions for him by then I’m sure. For now though I’m just really happy with where things are with my treatment.

Markers of Time

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According to my TimeHop app, that was my status a year ago. Pardon the few grammatical and spelling errors. October, 11, 2013. That date, I’ll never really forget it really. It’s a day I play over and over in my head frequently. It was a very stressful day. The amount of emotions that I was experiencing, I don’t think I can begin to quantitate.  That day I had started the day by calling the office that has become my office that oversees my eye care to inquire about prices. After speaking with the lady for a few minutes she informed me I was having symptoms that needed to be seen that day, and that it couldn’t wait. She was concerned I had a Detached Retina. While I knew there was something wrong with my eye, I knew that wasn’t the answer. She scheduled me a late afternoon appointment with the man I affectionately refer to as Dr. B. He is a Retinal Specialists. He is said to be one of the best in our area. Honestly, he is the man you want to see if you need a Retinal Specialist.

I remember sitting in the waiting room scared to death. I had never been to an office like this. Prior to all this craziness my vision was perfect. I never needed to get vision tests other than the ones I needed in school. I was a little overwhelmed at the whole process as they ushered me through the process. In one room, into one exam chair to do the vision acuity test, dilating drops, fill out my medical history information. Then back to the waiting room. It was the end of the day almost so there weren’t that many people left. Then in to the room with the retina scanner. After I had fully dilated I was escorted to another room with an exam chair. An older,  tall and lanky doctor strolled in and introduced himself after a short wait. He took a quick look into my eyes, and then informed me that I had a clot in my right eye. Essentially I had a stroke in my right eye, you can read more about this appointment in the post called : It’s like a Stroke In Your Eye and It’s like a Stroke In Your Eye Pt. 2

I remember the crazy emotions that coursed through me as I listened to him talk. Honestly, one of the strongest emotions I felt that day was relief. This was the first answer I had to what was going on with all the bizarre symptoms I had started experiencing after my miscarriage. Because of this appointment with Dr. B, I was able to convince my PCP at the time to start me on Warfarin. Later on due to Dr. B being my doctor I was starting on Plaquenil at his insistence prior to being diagnosed with Lupus. I also contribute finding my Hematologist to him and one of his colleagues. My Hematologist handed me off to my Rheumatologist. My amazing healthcare team is, what is, largely because of Dr. B.  I had no idea how things were going to transpire a year ago. All I knew was this doctor was able to tell me what was wrong, and gave the most likely reason to why it had happened.

At the age of 29, you don’t expect to hear you have a blood clot lodged somewhere. Especially not in your eye, that’s something that is seen much more commonly in older patients. In someone my age, it was more likely to be seen in patients with Lupus and Antiphospholipid Syndrome. Looking back, I’ve come along ways since that post. I’m no longer pleading with people to listen to me and to take me seriously when I tell them something is wrong with me. The people who matter, listen and take me seriously.

At the age of 30, I’m still learning a lot about my conditions, the medications I’m on. My anxiety level is a lot less than it was a year ago. I know part of that is because I have taken the time to educate myself. I have made connections through support groups with others that are going through similar things.

Last year I couldn’t think ahead more than a few days without getting overwhelmed at the thought and crying. Now I’m excited to see where my frame of mind is this time next year, when that status rolls around on the 2-years ago list.

Oh and incase anyone is curious, even with the damned blind-spot in my right eye (that looks sort of like a shark shaped blob when I close my left eye)….my vision is still 20/20 in both eyes!

Flu 101: Vital Qs & As about the Flu

I did not write the following Article, I found it via the LFA Blog. Just sharing useful information. Author is mentioned below.

Flu 101: Vital Qs & As about the Flu

By Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator

As summer draws to a close and the cooler months creep in, flu season is right around the corner.  It is important to take preventative measures to protect yourself against the flu. Those with lupus are at increased risk for infections (including the flu); so, for most people, getting a flu shot should be a top priority.

What is the flu vaccine?

The flu vaccine is made to protect individuals against the most common influenza viruses that are predicted for that particular season. The vaccine usually protects individuals against the top three or four influenza viruses that experts predict will be the most common for the upcoming year. Scientists then use one or two of the influenza viruses of each kind to develop that season’s vaccine. It takes about two weeks after vaccination for the antibodies to develop in your body to provide protection.

When is the typical flu season and when should I receive the shot?

The typical flu season can start as early as October and can last as late as May. Usually peak activity in the United States is in January or February. Individuals should receive the flu vaccine as soon as it becomes available, ideally by October (you can speak with your physician or pharmacist to determine when the vaccine is available).

Who should get the flu shot?

Generally, the flu vaccine is recommended for all persons aged 6 months and older.

Why is it important for those with lupus to get the flu shot?

Those with lupus are at increased risk for developing infections for these reasons:

  • The way that lupus affects the immune system can negatively impact the way your body fights off foreign invaders, such as bacteria and viruses that can make you sick.
  • Many people with lupus take certain medications that can lower the body’s ability to fight off foreign invaders. These medications, known as immunosuppressive medicines, help control the overactive immune system in lupus. However, in doing so, they limit the body’s immune response and can leave the individual open to infectious agents, or foreign invaders. Therefore, it is important that those with lupus take all precautions to ensure that they do not get the flu.

Why do I have to get a new flu shot every year?

Flu viruses change all the time and can change from one season to the next, even within one season. In addition, studies have shown that the body’s immunity to influenza viruses declines over time due to various reasons including age and an individual’s overall general health. Thus, it is important to receive a yearly flu shot to make sure that you are always protected.

Do I have to get a shot?

The flu vaccine can be delivered in several different ways. The vaccine can be administered as a shot in the muscle or skin, or through a nasal spray. However, the live-attenuated vaccine (nasal spray) is not recommended for (immunosuppressed) individuals with a weakened immune system and thus, not recommended for patients with lupus.

The conversation about the yearly flu vaccination should start earlier rather than later. Please speak with your physician now about the availability of the yearly flu vaccine.

For more information:

http://www.flu.gov

http://www.cdc.gov/flu/protect/children.htm

 

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A note to my readers,

I encourage everyone to speak with their doctor about getting the flu shot this year.I got mine about 2 weeks ago. I was required to get it this year if I wanted to continue one of my treatments. Honestly though, I’d much rather deal with the few side effects of the flu shot and the risk of a small flare, than to risk getting the Flu and having to deal with the fallout from having to fight the virus, my bodies reaction to having the Flu, and what would most likely turn into another drawn out flare and battle to get things back on track. I’m basing this assumption on the struggles I had over the case of Bronchitis I had in August. I hope your Autumn is off to a fun and Flu-free start! Take care and stay well dear friends! 

Nicole