Letting Myself Have Lupus.

“For after all, the best thing one can do when it is raining is let it rain.”
Henry Wadsworth Longfellow

Acceptance is a funny thing, especially when you are dealt a card in life that you can’t give back. Oh I’ve tried many times to give this back to the doctors. It’s a running joke I make to my PCP on a regular basis. He may not find it as amusing as I do but, it does entertain me from time to time to offer to give back my illness, it would make things simpler if that’s how it works. I’ve asked many times where the return box is because this isn’t working out so well for me.

I simply do not know how to be the sick person they tell me this requires me to be. My therapist says, that  in part is my fighting acceptance. I argue that I take my medications daily, I don’t revolt against the doctors. I have even stopped arguing so much when it comes to doing rounds of prednisone. What else is there to accept?

It still feels weird to say that I have a lifelong illness that affects damn near everything I do, want to do, or could possibly plan to do. It still frustrates me to have to change plans at the last-minute, is that where the final stage of acceptance would benefit me? Would it frustrate me less if I just gave in completely and let this horrible disease call the shots.

You see…I’m a bit of a control freak. I know shocker right? This really showed when everything in my life spiraled out of control and I starting obsessing over the tiniest little details I could control. It still is something I have to keep in check or it gets nerve-wracking. I have some tendencies that could be considered OCD. It is something I monitor and so far they haven’t gotten out of hand or disrupted my life too bad. I am a bit of a germaphobe thanks to this.

I’d like to take a moment and discuss what acceptance of an illness might look like on a ‘normal’ person level. You start feeling run down, you argue that it is just lack of sleep. Your throat starts hurting and your nose starts getting stuffy, man it must be allergies, because you don’t have time to be sick. Then everything starts tasting weird and the panic sets in, you realize that your friend or coworker was sick just the other day, and this is starting to look all too familiar. You fight it for a few more hours at work, and then all of a sudden you can’t go any longer and you go home early. You a few days into your illness by this point, before you have accepted your fate. You still go through feeling frustrated because it disrupts your schedule.

Why would it be different for a Chronic Illness? I would suspect scale wise I’m still right on track. (There isn’t a track)

Now imagine feeling like you are constantly fighting off the flu (accept it). You deal with constant pain in your joints, routine fevers, rashes, nausea (accept it). Doctors appointments so routine they know you on sight, who you are there to see, and can tell if you are there for a routine test or visit, or if its one of your flare visit, simply by the sound of your voice and appearance (accept it?). This is your normal. This is your life. This is what they tell you to expect for the foreseeable future, and unless they find a cure, forever, for life until you die. You will always be sick on some level.(Have you accepted it yet?) Then when you finally figure out how to manage your daily symptoms, and move forward with life, and find your footing, you encounter flares, you know those pesky things where you’re manageable symptoms all spike to off the charts levels and leave you barely able to hold it together long enough to think through what the next step needs to be.(Why haven’t you accepted it yet?) This is going to happen over and over. The hope is to find a treatment plan to minimize the impact, but the experts will tell you that sometimes flares just aren’t avoidable. That it is just something you have to learn to live with. (Wait you are overwhelmed with just the thought of this?)

Letting go of the healthy me, that woman who had a bright and shiny future ahead of me, and altering my plan for the future to allow for this new version of me to exist hasn’t been easy. It has been a lot to take in, a lot to mull over and consider. I’m an over thinker by nature and it usually gets the best of me I know, but I also know I’m usually ahead of the game when it comes to planning and having a backup plan in life.

Who knows when I’ll fully accept that I have Lupus and APS, there is not a time line on this type of things. Over the next little while, I’m going to figure out a new approach to self-care, a flare protocol, what this all really means for me. I’m truly going to work on acceptance. I’m going to work on figuring out what it means to let myself have Lupus.

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Venlafaxine Yes, Sleep No.

(image credit:http://orig02.deviantart.net/ff8d/f/2013/055/2/5/insomnia_by_nightwolf7272-d5w2i1p.png)

I am coming up on the 3 week mark of making the switch from Mirtazapine and Venlafaxine. The first couple of weeks were definitely odd, and I’m sort of wondering if the transition from one medicine to the other is what shocked my system enough to trigger this current flare I am in. It wasn’t something that I considered would happen when I made the transition but I suppose going forward I should be more aware that changes like that may trigger a flare.

The good points about this medicine is that I’m definitely noticing myself being calmer during situations that would normally send me into a panic. It’s not 100% yet but it has definitely made a positive impact on my anxiety. Even at nighttime when I would normally have my nocturnal panic attacks, now I just lay awake with my mind racing through the problems that it is trying to solve, without the ensuing panic attack that usually follows those times. It has been nice to experience this lessening of anxiety. I may request the next higher dose at my next visit as I think it will be more beneficial. With that said, I’m also wondering if I had gotten to the point where Mirtazapine was causing me anxiety vs treating it because I literally felt a change almost immediately after I stopped taking that medication. It was enough I plan on mentioning it when Dr. C and I have a chance to sit down and talk about this part of my care again.

Sleep Still eludes me, I have many nights where either I snap awake between 2-4 to solve the world’s problems, yep my brain thinks it is a superhero! So I spend the next couple hours trying to convince it that there is nothing we can do to solve the problems it is thinking through during the wee hours of the morning. Now that the panic is less, it is really like a silly argument going on in my head. Seriously if they weren’t so damned annoying they would be rather comical. I’m following Dr. C’s advice and only taking Ambien every 3rd night of sleeplessness. It has been a cycle of horrible sleep and patchy sleep even on the nights I take it. There has to be a better solution to my sleep issues. The night after I got my Phenergan and Toradol shots this week I slept amazingly well. Best sleep I have had in a long time. Too bad I can’t just take Phenergan for sleep! I fell asleep curled up in my favorite blue chair and woke up long enough to drag myself to bed and promptly fell back asleep. It was amazing. I know part of my sleep issues are pain and nausea related, especially during flares like this one.

Someday I will have peace, sleep, and happiness, and be relatively pain-free. Hey, I can atleast hope right?

(Image Credit: http://a1.files.biography.com/image/upload/c_fit,cs_srgb,dpr_1.0,q_80,w_620/MTI5MTU3ODY5NzA5ODU5Mjk0.jpg)

Over the last two years in facing my illness I have faced many challenging moments. The struggles with the daily symptoms alone have been enough to make me want to give up at moments. The side effects to my meds are debilitating from time to times. Then you throw in a flare every few weeks or months and its down right overwhelming.

Yesterday as we were leaving my doctor’s office my best friend asked me a difficult question on our way back to the office “When do you know to take a day off because of this stuff?”. I sat for a few and then eventually was able to breathe long enough to tell him that I hadn’t figured that part out yet. I don’t know when to stop. I don’t know when I’ll be okay with my life pausing long enough to take a day or so off for a flare. My schedule right now is set up that on days I don’t have clients I mainly help out around the office and am here in case we get walk ins. It is a great set up. After my shots, I didn’t see any reason to go home and feel horrible for breaking my word about being there instead of at work. I already felt bad enough about needing to leave for the hour it took for us to run to my appt. Commitments and promises keep me moving forward. Giving someone my word, gives me a reason not to give up. It allows me to know that even when things suck really bad because of Lupus, I can still be a dependable person. It may not always be on my terms because my body gets hijacked from time to time, but I will always follow through with what I have committed to.

During flares it is almost like I go through this emotional drive to prove to myself and those around me that I’m okay, even when I’m not. There is a whole lot of frustration with the extra meds, I loathe being on prednisone, I feel yucky because of the flare, the extra pain distracts me, and the nausea is often enough to where it impacts my ability to eat. I approach each flare with the goal of doing what I feel is best for me. I’m learning quickly that no matter what you decide to do, or when you decide to do it though, there will always be criticism. Sometimes it is meant well. Sometimes it is simply because you didn’t do what the person you thought you should do. Those moments can make me feel like I have had the wind knocked out of me, and it is another instance where I consider giving up in this journey.

Continuing to fight, continuing to slowly put one foot in front of the other, and to deal with the symptoms as they come, and hope each day is better for the other is how I make it to the next morning a lot of the times. Hope gets me through the other times. When I’m all out the other two options, I fully admit I get through those moments I have to find one of my stronger support system members and let them help me. It hasn’t been an easy journey, there have been a lot of bumps and wrong turns along the way….and I have miles to go before I sleep.

In response to The Daily Post’s writing prompt: “Forward Drive.”

LOST

by: Nicole Davis

Back before the war,

when life was full of so much more,

before the attacks began that left her lying low,

prior to the red upon her cheeks began to glow

Do you remember her?

Back before the pain became too much,

when life offered a plethora of common touch,

before the tears were cried and the pills were taken,

prior to the beasts within beginning to awaken.

Did you see her leave?

Back before all the tests and results,

when life was pleasantly void of insults,

before appointments became routine,

prior to learning what these medical terms mean.

Is she still in there?

Back before the long list of medications,

when life was full of holistic remedies and meditations,

before being labeled as chronically ill,

prior to the first medical bill.

Will she make it through the battles?

Back before this new life began,

when life was a journey and there was a travel plan,

before things turned upside down, and the way was lost,

prior to my immune system getting confused and crossed.

Will she remember 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

 

The Expected-Unexpected Reactions to Vaccines

Tuesday morning I started my day thinking everything was going to be okay. Around 11:15 I started having rapid fire migraine auras and it became evident that I was having a reaction to something. At the time I thought it may be the nasal spray Dr. C prescribed. I had just taken my dose and they started almost as soon as I took it. After the 4th one started in just a short few minutes I had his office on the phone at 11:30 and Doug and I were on our way to his office for a 12 o’clock appointment with him a few moments later. On the way it dawned on me it was probably the vaccines making my very mild flare worse. By the time I got checked in and the nurse called me back to the room I was almost to aura # 10, was experiencing double vision spells, and blurry vision, my joint pain had doubled in intensity from the day before and I was pretty miserable not to mention a little scared.

Claire was with him again, so she came in, talked to me briefly, checked me over, and then started to step out when Dr. C stepped in. He took one look at me and goes “You are in more pain today than yesterday and we need to stop this from getting any worse.” He went over the options we had, but had already made his mind up as to which one we were going to take. Prednisone was the course we took. It is in my file that I have a mild allergy to this drug. It makes me vomit. I have had one experience with this drug and that was 10 years ago. We had discussed a few times that we may need to try a round of them during a flare to see if it would help me. He wrote the prescription for 30 mg but told me to start with 10mg and see if that helped and to only take the lowest dose I needed, and once I started feeling better to taper down from there.  He also prescribed Phenergan to offset the nausea and any vomiting I may experience from the Prednisone. As I left the appointment Dr. C said he was sorry things were so rough right now, and that hopefully things would calm down soon. He also said he’d like for me to call my Rheumy and let him know what was going on, especially if things weren’t better by Thursday.

After leaving the office Doug and I went by the pharmacy and picked up my prescriptions. As soon as we got back home I took 10mg and as soon as it kicked in my migraine auras stopped. I was still in pain at dinner time so I went ahead and took a second 10mg pill. That was enough to start decreasing my joint pain, but it also required me to take a Phenergan.

Good call Dr. C, Good call.

Today I’m feeling a good bit better, still not 100% so it’s another 20mg day. I’ll see how tomorrow goes and go from there. I went ahead and called Dr. L and spoke with his nurse just to let them know what was going on. She is supposed to call me back if he wants me to do anything differently or has any other advice on what to do. I’m not scheduled to see him until May 19th but she said he may want me to come in before then, and he may want me to go back up on my Plaquenil dose, or he may start Imuran sooner than planned. So we will see.

This morning I was sitting on the couch contemplating calling Dr. C’s office and asking if I could see him for my INR check monday instead of the NP, because we are anticipating it being crazy because of the addition of the steroids this week and I’d feel more comfortable with him overseeing this week’s adjustment. My phone rang and it was the switchboard and I figured it was one of my specialists calling to change the date of an appointment but when I answered the phone it was Dr. C’s office and the receptionist on the phone said there had been a change in the schedule and they needed to change my appointment. So it worked out that my INR check got switch to be with Dr. C anyways, without me even requesting it to be done. This means I’ll see him 3 times in a week’s time, and for the 4th time this month. At least he has a sense of humor, and isn’t as intimidating as some of my specialists!

Appt with Dr. C and The Student Doctor

Yesterday I had an appointment with Dr. C, my Primary Care Physician. This appointment took the place of an appointment that was scheduled for later in the month as a follow-up for my Chronic Illnesses and was meant to touch base over notes from my Rheumatologist, update him on where things stood there, and to start the process of getting my immunizations updated in preparation of starting Imuran next month.

This appointment turned out not to be a normal appointment. Not that my appointments are anywhere close to normal though. When Cindy, the nurse took my vitals at the beginning of my appointment she explained that Dr. C had a student doctor following him and asked if I minded her coming into my appointment with him. I said I didn’t mind at all. Truth is, it did make me nervous, but I also realized the value that is in the exposure student doctors get in their rotations during their rotations.

Cindy left briefly to go get the INR machine and she came back and we checked my INR, 2.5, great, low. No changes to my diet, no changes in my meds other than this was the second week of a lower Plaquenil dose. My target range is 3.0-3.5. I had gone 3 weeks teetering right around perfect, then all of a sudden bam, low. Some days I get so frustrated with APS, and Warfarin and this whole balancing act. My only theory is that I’m in a mild Lupus flare and perhaps that is impacting my INR.

After Cindy left, Claire the student doctor came in and talked to me while Dr. C was finishing up with another patient. She asked about Antiphospholipid Syndrome, Lupus, and how they presented in my life. I gave her the whole story. She excitedly exclaimed “WOW, that’s exactly how they teach it, and how it is in the textbook.” I was impressed. Finally! Finally doctors are being taught the truth about this damn disease! Not to sound ageist or bias but one of the best decision I made about my health care was the decision to go with a new (young) doctor when I had to replace my Primary Care Physician back in January. Now to make an overly technical analogy about it, it’s like upgrading your computer, you don’t usually replace your old system with an old system, you usually buy a new computer when you need a new one, so when you need a new doctor why not find a new one with the most up to date information who just recently came out of school. I chose to go with the new vs experience because of the updated information being taught on APS in recent years. Of course experience sometimes wins out, but It is amazing the experience they gain from med school, internships, and residency.  Talking to her was interesting, she had just done a small rotation at Duke Pediatric Rheumatology  and was familiar with Lupus and APS from being there. She asked me why I thought my INR had dipped and I told her my theory on my Lupus flare. She took notes and did her own exam and then went out to discuss with Dr. C.

A little while later Dr. C came in and did my actual appointment. My appointments with him are always longer than average. This one turned out to be closer to 2.5 hours long by the time it was all said and done. Dr. C has a good sense of humor, and that has helped a good deal. I can’t handle overly serious doctors. They intimidate the crap out of me. As he came into the appointment he settled in on his stool and leaned against the wall, in that manner of ‘yep I’m going to be here awhile.’ Then he made some comment about my INR, and I said “Uhh the wind changed? Uhm I looked at something green? The moon is full?” He laughed and I said  “Seriously, I think my allergies have my immune system pissed off and is causing a small flare” He agreed that this was likely the culprit as we have seen this happen in the past. This is by far not the worst of my flares and we decided the best course of action was to treat my allergies, so he prescribed a nasal spray. Then we talked about the referral put in for the group of therapists I want to work with, so I should get a call from them with an appointment in about 10 days. It has been a stressful time in my life, it’s not just the diagnosis, life really has been one stressful thing after another for the last few years. It’s been 3 years of things I really need to talk to a therapist about and to help sort through. It’s time. But a good part of it is due to the anxiety and the adjustment of life with chronic illness and there is no shame in that. I will come out of this a stronger person.

We discussed my Rheumatology appointment, and I gave him copies of my lab results from the tests they ran. I told him that Dr. L was a little miffed as to why my Lupus test results were coming back negative, that I have 7 of the 11 diagnostic criteria for a diagnosis for SLE and that is why Dr. L had diagnosed me with SLE. I also made mention that he had reached out to the folks at Duke to see if there were other ways to test me, as he felt there as something genetic going on within my family causing us to test negative, as it is a trend that seems to happen with us. We discussed more about Lupus and it’s impact in my life and how it and APS coexist.

We talked about Imuran and that Dr. L plans on starting me on that in May. It may require me to bump up my Warfarin dose so we talked about the need to schedule an INR check 3 days after I begin Imuran, and then a week after. I have my INR checked weekly so that will not be too big of an issue. I’m just concerned about the increased Warfarin dose, my standard daily dose is 15 mg a day when my INR is behaving, to keep my INR around 3.

Partway through my appointment Doug asked Claire how she was enjoying her time at the doctor’s office and she said she was enjoying it and learning a lot and thanked me for letting me be involved in my appointment. Her plans are not to be a PCP, she is headed to be an Ear Nose and Throat specialist, but said now anytime in her classes they discuss APS or Lupus she will always think of me, and remember our discussions. Dr. C then proudly (at least there seemed to be pride in his voice) exclaimed ‘She knows her stuff and she is a good patient to talk to, she is open and honest, and she talks to other patients in her support groups and reads a lot of blogs about her conditions but don’t believe everything she says she’s a liar.’ This was said with a complete mocking sarcastic tone, and I followed that in suit with a heart filled mock handover my heart ‘oh that hurt Dr. C!’ We laughed and he goes ‘And I blame Doug for my sarcasm’ to which we all broke out in laughter. Seriously any other doctor of mine had called me a liar even jokingly I would’ve been highly offended, none of us have that relationship. Dr. C though, he makes me feel comfortable, he makes me feel safe to be myself. I’m not just a Lupus patient, or that patient with APS, or ‘OH god it’s that patient with the chronic illnesses again’ Or at least if I am he never lets on that he thinks that if he does.  Patient-Doctor relationships are important and it is important to feel at ease with your doctors. I know I tend to see my PCP more often than I do my specialists and a big part of that is he makes me feel more at ease. My specialists are all tall, older men, who are very serious and intimidating. It took me several appointments to get my Hematologist to smile, I’m still getting to know my Rheumatologist, and my Opthalmologist only needs to see me if I’m having eye problems. But for the most part they all are very serious, intimidating, and see me as a condition not as a person.

Even to Claire, I will forever be remembered as that patient with Lupus and APS. But more importantly, and exciting, I’ll be the patient that helped make these conditions real to her. I’m not sure how often she will see APS in her specialty, I suspect she’ll see Lupus more often in the context of some of the secondary conditions that can present with it, with the inner ear. Though APS can affect the inner ear as well. Especially for those who have micro-clotting issues.

I received two vaccinations while at the appointment yesterday, the pneumonia vaccination and the meningitis vaccination. When I asked what sort of side effects I could expect from these vaccines Dr. C said with me, he had no idea. He told me to schedule my next INR check with the nurse practitioner and to schedule a follow-up appointment with him in  1-2 months.

This wrapped up his part of the appointment, and we said our goodbyes and then the nurse came in and gave me the shots. I went to the checkout desk and scheduled my next two appointments.

My appointment next week is for monday afternoon, and I scheduled my next appointment with Dr. C for 3 days after I should start Imuran. That is the suggested time to have your INR checked for concomitant use of Imuran and Warfarin. It is known to require an adjustment/increase in warfarin dosage.

I left the office pretty thrilled I had the chance to talk to Claire, the student doctor. She is going to make a good doctor, I’m glad I had a chance to cross paths with her.