Home, My Body, Carrier of My Soul.

There was a time not too long ago I was at home in my body. I was confident, I felt proud of who I was as a person. I did not struggle with processing how others viewed me, nor did I care so much about how they viewed me. Body image was not a problem for me until a couple of years ago, now I can’t stop seeing the flaws, and it really cuts me deep when someone points something out. My soul feels trapped in a prison, rather than at home in this body. It’s like living in a foreign land, trying to learn a foreign language and all of the cultural beliefs, rules, and lifestyles. It is like figuring out a new normal, while having to accept your old life, the one that you loved, is gone forever.

Getting sick was not a choice I made, It was not something I asked for. When I first got sick, I had a friend very rudely asked me “Do you want to be sick?” This happened while I was trying to explain to her my concerns, my thoughts on what was going on and what my doctors suspected was happening. It hurt me deeply, I cried so hard day sitting in the restaurant with her. It ultimately was a turning point in our relationship and I put a lot of distance between us, and things will never be the same. That was the beginning of me questioning every relationship in my life, and how that person viewed me. I began being hypervigilant about what I said to people, and am still on edge about trusting people. (I have always had trust issues this just exacerbated them).

Getting sick also made me start looking at my flaws. First I questioned if I had done something to cause all of this. Then I questioned if it was the fact I was a little overweight. Then I started focusing on the fact that I had a rounder belly than the skinny girls, thighs that were bigger than a skinny girls. My hair wasn’t always perfect. My face is often red because of my butterfly rash. I have other rashes that affect other parts of my body. This ultimately made me wonder how other people saw my obviously broken body. I just felt (and sometimes still do) like I was completely broken by this, but I fight hard to regain the parts of me back that I can.

I have always been socially awkward. In the past I learned to deal with it and the small social anxiety was manageable. These days if my medication isn’t working properly or I am amidst a flare it is pretty intense. I have days where I feel trapped and I will just sit quietly if I don’t have the need to interact, being an introvert does not make this part of my prison any easier to deal with. This has been the single most isolating experience I have ever been through in my life, and it is hard once you feel isolated to remember to reach out to loved ones, and even the people you are paying to help you get through this. I do my best, and I’m getting better at that part. It is also hard to connect with people who haven’t experienced or been around someone with Chronic issues, they tend to look at you like you are talking crazy when you try to explain what your life is like. I’m still not sure how to deal with this part, other than just not talk about that topic much.

My hope is to one day have a soul that feels at home in my body again. I would like to be at home again.

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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.

5 Things My Illnesses Have Taught Me

(Image credit:http://7-themes.com/data_images/out/64/6990593-purple-flower-macro-30248.jpg)
  1. Appreciate the Small Things

    Those days where it takes all of my energy just to crawl out of bed. Those days when the pain is forefront in my mind and I know it’s going to be hard to get through the day, I try to keep focus and stay positive by tallying all of the positives in my life. Some days it gets down to the bare essentials, and the smallest things I have to be thankful for to keep me going, but it works for me, and it helps me stay centered and moving forward.

  2. Empathy and Deeper Understanding

    Since I was 11, I have suffered from Migraines. I’ve known Chronic Pain from them since I was 15, when they started being a more chronic issue for me. As the years have progressed, and now with the diagnoses of Lupus and APS and the complications I experience with these conditions, I have a deeper understanding of a wide array of ailments that people are faced with. I also Empathize with those that suffer from various chronic conditions. Likewise, when some comes to me with an acute pain, or ailment and tells me how it is impacting their life, I empathize because sometimes the acute pains in life can hurt much worse than the pains you deal with on an ongoing basis and have adjusted to deal with them. I have a whole new appreciation for the pain scale, and people’s own experience with it due to my experiences.

  3. The Power of Laughter

    I have had some pretty serious moments where the moment came that it was either laugh through it or break down and cry. I thoroughly appreciate being surrounded by friends, loved ones, and even a medical team that understands my sense of humor (and me) enough to know that when things get super serious, I need to be able to joke my way through it. A wise man once told me, if you can laugh your way through it, you’ll survive. It got him through 2 battles with Leukemia before the 3rd one took him from us. He laughed his way through it all. He is one of my heroes.

  4. Support Comes in Various Forms

    I have been fortunate with the various forms of support since I got sick. I have loved ones that are by my side and help me cope and fight each day. I have an amazing doctor and healthcare team that do their part to support and keep me going. Sometimes they even go out of their way a little and support me by listening that extra bit of time. My therapist that I see every two weeks has done wonders for that part of my care and support. She has also taught me various tools to help me cope. I have also found amazing support through online support groups specific to my conditions via Facebook, I have made a few wonderful friendships this way, and it has just helped having people going through similar things to talk to on occasion. That has helped me feel not so isolated.

  5. How to Survive

    Sometimes we don’t realize what we can truly endure and survive, until we come out the other side of it a survivor. I look back over the first part of my journey with my illnesses and the things I experience and at times I still break down. In the beginning when I would cry it was because I thought I was not strong enough to get through the things I was facing. Now I realize I was breaking down because I was trying to be strong at the wrong moments, and not allowing myself the chance to process, and heal. There are moments in facing life you have to stay strong, there are moments when you have to break down and let it out. Ultimately though, life shows you how to survive what you are dealt. It is up to you to figure out the rest. 

On The Road To A Happier Place

I see a therapist. I call her AL. I started seeing her at the end of April. Chronic Illnesses or at least for me, awoke a lot of fears and anxieties that I didn’t realize I had. Or maybe I did and they just became overwhelming as I became sick, became sick. Damn-it that still seems so weird to me. Became sick, I don’t get to get better though. I am a Chronically Ill person. That has led to an insanely intense fear of becoming a burden to my loved ones. Now that I have a couple of chronic illnesses that have unpredictable courses, this fear overwhelms me at times.

First of all, Antiphospholipid Syndrome, is an autoimmune blood clotting disorder, puts me at a higher risk for strokes, heart attacks, DVTs, PEs, and other clotting events. I have already had several transient clotting events, as well as a clot that lodged in one of my Retinal Veins and led to a small area of blindness in my right eye. This has left me fearful of any change to my vision, as I can never be sure if it’s the start of another clotting event, a side effect of a medication, or even migraine related at first. This has been a major source of anxiety. I can tell you now, the mere thought of more vision loss, causes an instant panic to run through me. Blindness would definitely cause me to be more dependent upon my loved ones, and thus more of a burden. So far my clotting events have all been micro-clots. It is my hope and the hope of my doctors that we can stop any more events from happening, and especially prevent any large clotting events from happening. I still live in fear of the next one happening though. I’m not sure that fear will ever go away, regardless of the amount of therapy I undergo.

Now let’s talk about this other diagnosis that is out there looming. Lupus, another autoimmune condition, with no predictable course. Even my diagnosis is going on an unpredictable course. I don’t at this time have the positive labs to ‘support’ a ‘definite diagnosis’ of Lupus as my Rheumatologist says. So instead I am being treated for a ‘Lupus-like Illness’ because my symptoms are ‘highly suggestive of a ‘Lupus-like illness’ (do you think perhaps….because it IS LUPUS????). Another phrase that has been thrown in the mix is Undifferentiated Connective Tissue Disease. Which is sometimes a catch-all used by doctors when they want to say ‘hey we get it, something is wrong, but we can’t make a definite diagnosis at this time so we are going to label you with UCTD and treat you for Lupus without calling it that at this time’. I know my family history, I know my symptoms. I know what I’ve read, and what the Lupus Foundation of America’s website and many other resources have said. This is Lupus, seronegative at this time, but nonetheless, this is Lupus. It will eventually be supported with Labs, I just have to get sicker first, yep that’s how it seems to me. I’m not sick enough yet. Of course in July I’ll see a Dermatologist so we can see if we can track down the elusive antibodies that way to see if we can at that time ‘definitively diagnose’ this as Lupus. As I told my PCP, the Rheumy can call it what he wants, I know what it is, as long as he continues to treat me, I really do not care, other than being frustrated over how things are playing out. I also know, eventually the labs will be positive, eventually he will get what he needs to definitively diagnose me (unless he retires first), see….. I can wait this out, I know these things take time, I’m doing my best not to go anywhere, despite my fears of the alternative. Lupus or UCTD, whatever you want to call it at the moment, has an unpredictable path. It can attack any organ, at anytime. It can lead to disability at any time, and it can lead to more dependency upon loved ones.

Both of these conditions combined have been caused me a great deal of fear. I know, I know. You shouldn’t stress over what we don’t know about the future. What we know today could all change tomorrow. That’s part of the problem. My entire life changed in a matter of a few weeks. I’ve just recently started getting things back on a track that makes somewhat of sense with how I saw my life panning out. Of course there have been changes implemented to the original plan. I had always seen myself as one that would end up in the caregiver role for my family, to now be in the position of the one that may very well be on the receiving end of that relationship, it has been a bit of shift in how things are viewed. It scares me. I’m not good at being ‘sick’. I never was when it came to acute illnesses, and I’m not sure how I’m suppose to do this long-term.

This past week was a prime example, I had a flare, so on top of feeling physically ill, I mentally/emotionally beat myself up because I felt like an inconvenience/burden. Al and I talked about this at my appointment today. I told her that Friday alone I managed to inconvenience two doctors because of all of this. She stopped me, and reminded me, that it was sort of their job to do these sorts of things. We talked about that aspect of this and I agreed, but still I felt guilty. Then I mentioned how much of a burden I was for my husband and best friend and that I feared it was just going to get worse as time went on, and what if I couldn’t pay them back or show my gratitude enough. We talked through these issues, and by the end of the appointment I had gained better ways of confronting these specific cognitive distortions. Cognitive Behavioral Therapy has been very beneficial so far for me. I can’t say it has fixed everything, it probably never will, but it has given me another tool with how to combat the thoughts I struggle with on an almost daily basis. This alone should help me with my fears, anxieties, and the depression I face while dealing with my illnesses. It’s a work in progress, it will be for some time to come, but I’m on the road to a happier place.

Dear Lupus Flare

Dear Lupus Flare,

Hi there. It appears we are getting to know each other real well this week. I get it, trust me, I got the memo, YOU are not a fan of the sun, or stress, or maybe even the chickpea salad that I made over the weekend  that was oh so tasty. Please stop. You put me on notice. I’ve listened, I’ve lessened my time outside, I’ve even seen my doctor 3 times this week because of you.

I wish you or someone could explain to me why you are messing with my INR so bad. It had been so stable for almost 2 whole months. What gives? This past week you caused me to have THREE INR tests, at THREE different appointments on THREE different days. Monday was low enough, 2.4 isn’t cool man! Tuesday showed hope of rebounding when I was back at the office. That’s the day we figured out we were dealing with you. Dr. C gave me the option of starting Prednisone at that point or riding you out and letting you pass on your own.  I didn’t take into account that not all flares show up as pain. At least we figured it out. At that appointment Dr. C said to come back Friday (Monday at the latest) to see Cindy for my INR check. I chose to keep in on Friday since my INR was low the previous day. See…. I’ve already learned I can not trust you.

My choice not to start Prednisone on Tuesday was based on the fact that my INR was 2.7 on Tuesday so I thought, ‘Meh, if the pain doesn’t get any worse, I’ll leave things be.’  That was a mistake on my part, trust me….that mistake will not be made again.

Wednesday, was crap. If I hadn’t of known better I would have sworn I was coming down with the flu. I felt like utter poop. Thanks for that. I got a lot of snuggle time in with my pets, caught up on emails, and got some quality chat time in with some friends I hadn’t talked to in a while. So by sidelining me you actually helped me slow down enough to catch up with the loves in my life. Thank you for showing me I need to slow down. Thursday came and I didn’t feel much better, less flu-like, but still ran down and crappy. I mustered up the energy to shower and prep my meds for the following week, ate meals and well that’s about it.

Friday morning arrived and we headed to see Cindy. You can imagine (no you can’t) my frustration and disappointment when I saw 2.3 on the screen as the INR machine finished processing my result. After reminding Cindy this was way too low for me, (Remember my Range is 3-3.5-4ish? Yea) She went and grabbed Dr. C. I felt horrible, I was supposed to just see her. I wasn’t on his schedule and then all of a sudden, here I was a random patient added to his probably already busy schedule. I can’t begin to express how appreciative I was that he was willing that do that. I know there are plenty of doctors that would not of. Luckily my doctor….is not like most doctors.

He came in, talked to me, decided to call and involve my Hematologist in the process, and all of a sudden two doctors were being involved in this issue. Do you understand why this frustrates me? (I know you don’t). He had called Dr. M to see if we should do a Lovenox Bridge to tide me over while my INR rebounded. Lovenox is a different anticoagulant that works on a different clotting cascade that does not react to Vitamin K and the other things that Warfarin interacts with. His thoughts were, it would be sort of like an insurance policy while I came back into range. There are several issues though. Even with insurance, its expensive, it would be 1-2 injections I’d have to give myself a day, bleeding risks are slightly higher, and I’d have to come in for at least 2 more INRs in range before I could come off of it. So in a way it was great news when Dr. M said we didn’t need to do the bridge. Apparently with my Anticardiolipin Titers as low as they were last time, I am at a lower clotting risk right now. So at least that is good news. So we decided I’m on 17.5mg until Monday and I’ll see him then to get my INR rechecked.

Oh, did I forget to mention…..the  Prednisone? Yep you are on notice Flare. Your days here are numbered.

Goodbye at the soonest and no love,

Nicole

It’s like a Stroke In Your Eye Pt. 2

For as long as I can remember I have always received the best compliments on my eyes. So you can imagine my sadness when my diseases started attacking my eyes. I knew that they wouldn’t change their appearances, at least permanently. Short term, there were a few periods of time after some transient blood clots that I dealt with ruptured blood vessels that left my eyes bloodshot and dingy looking for a few weeks. I am sure I thought this was more noticeable than other people did. We always tend to focus on the negatives when they are happening to us, especially when they are terrifying.

I didn’t realize how important blood flow was to vision. I mean it makes sense that it would be, but it wasn’t until I developed ‘thick blood’ that I realized just how important. Back before I saw Dr. B for the first time, I was having all sorts of visual disturbances, including the blind spot that had developed. I felt like I was in a fun house of visual effects. My vision was distorted, I couldn’t focus properly, and was blurry from time to time. I know now that this was likely because of the thickness of my blood and because of tiny clots passing through the veins.

I still think back to that first appointment with Dr. B often. Those words ‘You’ve had a stroke in your eye.’ often play through my mind. At the age of 29, the words ‘you’ve had a stroke’ are far from what you expect to hear, and ‘in your eye’ are even more distant. I went from having not seen an eye doctor since my school days, because I have always had perfect vision, to now I see a Retinal Specialist routinely. My appointments are long, I’m at his office for about 2 1/2 hours every time I go to his office. They do the vision field test, dilate my eyes, and prior to me even getting to see the doctor do a retinal image scan, take pictures of my eyes and then I get to see Dr. B. This next time I get to see him, he will have to do an extra step because I’m on Plaquenil and it requires monitoring for retinal damage. It can be done at the same time he is checking on the status of my Occlusion and making sure there has been no new events that have gone unnoticed to me.

That’s the scary thing, Retinal Vein Occlusions can happen without you being aware of them. Not all of them affect your vision as severely as the one I had. Some of them go unnoticed until detected by a doctor. That still unnerves me when I think about it. So I try not to think about it too much.

I haven’t seen Dr. B since January and I’m sort of looking forward to seeing him next week. It will be nice to talk to him and fill him in on everything that has happened since the last time I saw him. It’s quite a bit. I changed PCPs, acquired a Rheumatologist, was diagnosed with Lupus, started Imuran, my Plaquenil dosage was adjusted, my INR range was increased to 3-4. There were some other changes as well. Most of all, my anxiety level has significantly decreased. I also want to tell him thank you. He has been there almost from the beginning of this craziness. He is the ‘senior’ member of my medical team. If all goes well next Thursday  I probably won’t see him again until December. Since I’m on Plaquenil I should get checks every 6 months to make sure that medication isn’t causing damage to my Retinas. I still find it odd that I’m on medications that have to be monitored, and that could cause me harm, that I’m at a point in my life where the risk of the complications of the medications is outweighed by the benefits gained by taking them. It happens when you develop a couple of pesky autoimmune conditions though.

 

 

Distorted Cognitions

I watched as she hurried around the front office this morning. I was there early so it was interesting to see her move around the place. Normally I don’t see her until she comes out of her prior appointment. Eventually she acknowledges me.

“Sorry, I didn’t have my make-up on earlier. Please feel free to go on back.”

I gather my bag, water bottle and phone and head to her office. I make myself comfortable on her couch. I’ve been here several times so I’m comfortable here, but today I’m fidgety. I can’t quite place why though. I look around the room while waiting on her. My papers are on the small table by her chair already. I’m obviously her first client of the day. There’s a wall graphic on the outer wall to my right. There is a bird and a quote about Obstacles, but it is partially blocked from my view by a toy easel she uses with her child clients. On the drawing paper, are two swans, one right side up and one upside down. I’m staring at these when she enters the room.

She hurriedly takes her seat and apologizes again. ” Sorry again, some days the goal is getting out the door. Then I have to do everything else when I get here.” she almost sighs as she slides into her chair and grabs my paperwork. “Hey, I understand, we all have mornings like this.” I say cheerfully. She looks at me and my session begins. We talked about the past two weeks. It was a lot of ground to cover. The year mark of my miscarriage occurred since my last session. I told her of my poem, that instead of avoiding the emotions of the loss I decided to meet them head on and embrace them. She listened intently and remarked “It sounds like this was a positive approach to dealing with this aspect of what is going on.” I agreed with her.

Conversation then changed to the anxiety I’ve been having over the fact that my Rheumatologist wants me to see the Dermatologist for skin biopsies. I started fidgeting and could not sit still. That part basically has played out that I’ve decided that I will see the Dermatologist for the skin biopsies but I think after that at least for a while I’m done, I think that’s where I draw the line with tests for a while. Unless something comes up that they are absolutely needed. Of course this is all subject to change. We go over the fact that my Hematologist vetted the Dermatologist yesterday, that I won’t see the Hematologist for a year but I’ll still have to go to the same office building to see the Dermatologist anyways.

Next we discussed about my ongoing anxiety over taking pain medication and the newest issue of Aleve. See, my Rheumatologist wants me to take Aleve but my other doctors have told me not to in the past because I am on Warfarin. At my last appointment he said I had to take it so we knew if the anti-inflammatory action of it was beneficial.  So I’ve been taking them as needed, no that’s not quite true. If I took Aleve or pain meds as needed I’d take them all the time. I take them when the pain gets unbearable. We talked about how I’ve been gauging when I should take it and when I shouldn’t. AL said “Perhaps you shouldn’t wait until you are irritable and it is affecting your day so badly. What if you took it a step before that point?” I thought about it and nodded. “You are right, I should take it sooner.”

We also talked about the book I purchased for CBT. Luckily I purchased the right one. We went through the various distorted cognitions. “Which ones do you think fit you?” she asked as she took a sip from her coffee mug.  ” Oh hang on I marked them in my book, Overgeneralization, Mental Filter, Magnification and Minimization, and Should Statements.” I said. She peered up from the papers as she added softly, “Jumping to Conclusions perhaps?” I sighed heavily, as much as I hate to admit it, “:Yes that one as well.” We talk about this topic pretty much for the remainder of the appointment in some form or another. She asks for a few examples and I  can barely get the words out “I still have moments where I feel I should have seen this all coming.” That is a manifestation of  Should statements and Personalization. I still feel I am somehow responsible for getting sick. I know logically that makes no sense, but the thought process still happen. I would say emotions, but what I’m learning through CBT is that emotions are triggered by thoughts. We feel the way we do largely because of how we think. I feel responsible, and guilty over being sick because of the thoughts I have about being sick.

The session wrapped up with her telling me to continue reading my book and to continue challenging my distorted thoughts as they crop up. We headed back to the front office and she scheduled my next appointment for two weeks and took my payment. “OOOO Cash!” She is always so excited when I pay with cash.