Destination

Mexico City Marked on a Map

Well, after a year and a half of flying around….in search of answers, it seems I have reached my destination. I would rather it be Mexico.

I saw a dermatologist last week who took a biopsy from my hand and it came back as Dermatomyositis. Probably “Amyopathic Dermatomyositis” – meaning it’s present primarily in the skin.

Dermatomyositis is typically a skin and muscle disease. I have had some pain/stiffness that has come and gone in my shoulders and thighs, but have not had the hallmark weakness. Also, my CK levels (used to test for muscle inflammation or damage) have always been normal.

I have noticed since beginning the AIP diet, I don’t feel that pain in my thighs.

I take Plaquenil, which he said is already the treatment. There are a whole host of other meds they use, but I think that is reserved for those with more muscle involvement or really bad skin disease. And I have various steroid potions for my skin when I have a little flare up.

I will likely need a few more screening tests, as DM can be related to malignancy or lung disease. But I have already had in the last year a 3D mammo, pelvic and transvaginal ultrasound, chest X-ray, PFT, shoulder x-ray and MRI….and had a normal colonoscopy 5 years ago.

Shame on all the doctors who dismissed me when I asked if this was a possibility. Props to my local dermatologist for encouraging me to keep asking – even if the biopsy he took came back as discoid lupus. I mean he just took the sample – a local dermopathologist read it. And I guess it can look a lot like lupus.

Always, always keep seeking out the best care you can. Even if it means a car ride and a train ride. Thankful I have found the doctors I have now.

This isn’t the end of my (therapeutic) blog…..but just an answer to that big question.

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On Board Dining

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It’s 7a and I just finished cooking myself lunch to take to work. Like full on cooking. Sautéed shrimp with riced cauliflower and yellow squash. This is so not me. I barely ever even brought lunch, and if I did it was a can of soup or a Lean Cuisine.

I think my friends at the local lunch spot are wondering what happened to me? I used to go over there at least 3-4 times a week for lunch. And it’s a healthy place. My go-to lunch was the quinoa protein bowl – lettuce, kale, quinoa, red cabbage, garbanzo beans, avocado, sprinkled with sesame seeds w/balsamic. Or the super food salad – mixed greens, quinoa, black lentils, artichoke hearts w/balsamic. GARBAGE!

What do you do when you are too health food conscious for the “health food”?

I wandered the aisles of Whole Foods yesterday in search of coconut milk without gums and other such consistency sustaining nonsense. I had to ask for help – they hide that shit. And then charge $7 for 2 cans. I read the labels on various products and put them back. I walked out with 2 cans of coconut milk, 3 bags of plantain chips, blueberries, 2 Epic bars and a tub of Vital Proteins Collagen Peptides.

This is hard.

Reading on the Plane

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As I kill time on this flight I don’t wish to be on, I read a lot of blogs and follow a bunch of Instagram accounts. I saw this on someone’s Insta today, and it just is todays feels.

Sometimes it feels like a blessing in disguise, something that grounds me and makes me appreciate taking things slowly and being patient with myself and my body. Some day it feels like I’m running the longest, most difficult marathon that I know isn’t going to end, and it takes all of my might not to give in and give up.

I can’t manage to form intelligent words with my jumble of thoughts, so I’ll just leave it at that.

 

Where’s that drink cart?

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Where are those onboard drinks? I could use one.

Dealing with an autoimmune/uncertain diagnosis not only creates physical problems, but also emotional ones. I’d dare say this has been the greatest challenge for me.

Yes, I try to be tongue in cheek here. I mean, if you can’t have some sense of humor about these kinds of things, you are in for a long haul. But the truth is when I first realized something was going on I was far from OK. So far.

I remember at one early point, dealing with some skin issues related to sun exposure, thinking haphazardly maybe it’s some kind of little autoimmune thing. What was autoimmune? I really had no idea.

As things seemed weirder and weirder . . . and as my dermatologist ordered some lab work, it started to sink in that maybe something was actually wrong.

 As I started googling and researching, I found out a lot more about autoimmune diseases – and none of it was good.

After seeing the first rheumatologist and hearing that something “was not normal” it really sunk in that something was truly amiss. Up to that point, I’d been hoping there was a simple and less scary explanation.

Did I take this in stride? Absolutely not. I recall sleepless nights. Crying. Panic. And one day when I hadn’t slept, I googled a lot. And got to the point I was pacing and so afraid. I went to my regular health center’s urgent care hours. And when the PA came in, I was a complete mess. Thank god she was a kind, caring and compassionate person. She ordered some tests that helped allay some immediate concerns. She prescribed Xanax.

I followed up with my regular doctor, who was so very kind. She was trying to calm me down, and would say “when you hear hooves, don’t think of zebras”. She prescribed Zoloft. I went from 25mg>50mg>100mg.

The meds sank in. And I finally found a good rheumatologist, who I still remember saying (as I shared my fear of the various connective tissue diseases) “don’t despair – we have ways of treating all of these”. I hold on to that.

Do I still worry? Of course I do. In fact, between starting and finishing this blog post I “researched” some things. There are some minor “new” things I have noticed. My rheumatology appointment is in 2 months. Should I message her? Or just wait? I don’t want to seem overreactive or like a nag, because in all honesty I want/need my rheumatologist to like me. I am still undecided about this.

What I do try and do is just take each day as it comes. I feel OK. I can do what I need to do. I just want to be sure I am staying on top of things. So that I can be as proactive as possible. Address anything that needs addressing. But not dwell. Not dwelling is hard for me.

I have gotten considerably better at being able to put my anxieties aside in order to enjoy other things. In the beginning I just wanted to stay home and be scared. Either I burned out on the intense anxiety – or the meds really are doing their thing – probably both. But I think it’s important to recognize the emotional toll this can take. And that it’s not so abnormal to be anxious, since the future is not clear.

Each time a new symptom appears or reappears, the anxiety starts to creep back in and I work to push it back down. I can’t change the symptom. I can work to change my reaction.

I think most people around me don’t see my inner struggle. My husband saw when I completely fell apart for a bit there. But other than that I haven’t told but 3 people about anything I am going through, and they don’t really ask about it. Because I seem fine.

So, I guess a lot of those old adages ring true. “One day at a time”. “Live in the moment”. “Be thankful for today”. “Think positive”. I keep reminding myself….

Old Flight Logs

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I’ve been looking back at some old flight logs. Or labs. And thinking about how those may or may not have corresponded with “things”.

I am not one of those people that think – “oh I remember that time in 1996 when I had a hangnail – that must have been related to my autoimmune woes”. And I am not one to lump every possible bodily sensation into the autoimmune problems pool.

But when I realized I could get my lab results – even earlier than they were in my rheumatologists portal – through the Labcorp portal – I found some old “unrelated” labs. I’ve had an irritable tummy for many years and at one point underwent some celiac testing. And it was in there. I never knew what it involved, what they tested – I just knew they told me it was “normal”. And I moved on.

But now when I see that panel, I see that my Immunoglobulin A (IgA) was elevated. Hmmm. What is the significance of that? An IgA test can help doctors diagnose problems with the immune system, intestines, and kidneys. It may be done in persons who have recurrent infections. It’s also used to evaluate autoimmune conditions, such as rheumatoid arthritis, lupus, and celiac disease. Apparently in celiac they evaluate the level with other labs, and if it’s low it plays a role in the interpretation of the other results. But one of the reasons it can be high is due to autoimmune/connective tissue diseases. So that test was 5 years ago.

Also….about 3-4 years ago, I had a weird rash all over my chest, stomach, upper arms that looked like ringworm. But I am sure it was not ringworm. It lasted about 8 weeks and then disappeared. It didn’t itch. And it was not related to sun/light exposure, as it was January. I never went to the doctor and wrote it off as possibly pityriasis rosea (a weird rashy skin condition).

And then 3 summers ago, I noticed my feet, ankles and hands would swell in the heat/sun. Of course I was out there basking in it. I thought maybe I just needed to lose some weight? I am not clinically overweight, but could at times benefit from losing 10-15 lbs.

Also….a good 8 years ago I had a bout of what I self diagnosed as costochondritis (chest wall/cartilage inflammation). It hurt like a bitch for a good 4-6 months. And then went away when I stop commuting as much. I thought it might have been related to how I was at a steering wheel so much more than before.

Thinking back there were time when I’d just feel a little less good than others. Like nothing that was really attention getting. But I’d get up in the morning and less rested and more…..achy? My feet would hurt when I got up to walk. Or my hands would kind of hurt. But I just figured it was hormones, weather, or who knows? It wasn’t significant. Didn’t make me think I needed to see a doctor. I just figured it would pass. And it would.

I guess this all relates back to my desire to understand what happened. When exactly it happened. How it happened. And I will probably never really know.

Instrument Flight Rules

 

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In order to understand how to operate a plane, you have to understand what all the instruments do, and how they work together, otherwise you can end up flying upside down into the horizon.

I spend a fair amount of time trying to understand my own instrument panel. And by that, I mean my body. And what is going on with it and why. Though I clearly find it unsettling, I also find autoimmune diseases a bit fascinating. I can see why rheumatologists get into the field, and it seems there is still so much to learn about and research still to be done.

I think it’s important to have a balanced understanding of what it going on, if you are experiencing any illness or disorder. And I think it does involve doing some of your own research. From reputable sources. If I hadn’t done that, I’d probably not be in the position of doing something proactive. And I’d not know what I should be monitored for and what sort of symptoms are significant. And I wouldn’t be on Plaquenil. Because the first 2 rheumatologists were not of the notion to either treat or recognize something that wasn’t straight out of a flight manual.

Anyway…. I am just chilling at home this weekend. It’s hot and sunny and my family are all otherwise engaged. So I am reading ….. analyzing….. and I think I would have to say if I was a betting person, I’d put my money on MCTD – if this UCTD “becomes” anything else. It lines up with the RNP antibodies. The muscle pain I was having. The weird capillaries on my fingers. The skin rashes. And I guess, if it were to devolve into anything, that wouldn’t be the worst one. I think at my next rheumatology appointment I will ask about an echocardiogram and maybe a PFT, since it will have been over a year since I had the last one. I just want to continue to be proactive and on top of anything that could be coming up.

Of course, still hoping it just stays undifferentiated …

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Red Eye

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It is an odd thing to wish for a cloudy day. The sun to set. The summer to end. But that’s what I do now.

The whole world revolves around the sun. Literally and figuratively. “It’s a beautiful day!” “Let’s get out there and do something!” Um….ok. Wait – let me put my one sunscreen on my face. Now let me spray myself head to toe in Neutrogena Helioplex SPF 100. Wait…what hat goes with what I am wearing? Now let me pack my sunscreens, as I will have to reapply in 90 minutes. Kind of a drag.

It’s also kind of isolating, when other people flock to do things, that you used to love to do. But now have to avoid.

I went to a wedding the other day. I knew it was a barn wedding, however I did not know the ceremony was outside. I didn’t pack my sunscreen or a hat. And I only applied a small amount…..just for a car ride. But then I found myself sitting in the middle of a bright and sunny field, knowing I’d end up with a rash and/or skin irritation. My scalp is super sensitive, and sure enough things there flared up.

I guess I have to always plan that my red eye could get switched up for a flight the next sunny day.

Out of Control Tower

So, it’s been a little while since I last wrote (or at least when I entered these posts originally in Blogger – switched over to WordPress). I did get all my results and I did see my rheumatologist again. My current diagnosis is “undifferentiated connective tissue disease” (UCTD). I guess this is a good thing. I am not experiencing a lot of symptoms right now. I am practicing safe sun behavior, since I am now photosensitive and get skin irritation and rashes in the sun. I’ve been on the Plaquenil for almost 6 months and it seems to be helping.

The good thing about UCTD, is that if you read about it, it tends to have a milder course. If it stays that way. But still 30% can go on to become a more defined connective tissue disease. So, while I 100% agree and feel comfortable with this diagnosis, it still leaves that uncertainty in your mind. What will happen? What will this become? If anything? I am an answers/control kinda person, and this is not conducive to that.

When I first saw my rheumatologist, I told her that I had an order in my mind of my “preference” for having a disease that kind of went: 1. Lupus 2. Dermatomyositis 3. Scleroderma. At this point, none of my labs point to any of these. As far as lupus (SLE) my ds-DNA, Smith, complements, CBC and urine were all normal. The myositis antibodies – a bunch – were all negative. And the scleroderma specific ones were negative too. The only positives were RNP – under one testing method, but negative under another. My rheumatoid factor came back positive, though had previously been negative. And my Beta-2 Glycoprotein 1 Antibody (IgM) was high. RNP seems to correlate with Raynaud’s – which I don’t have. And arthritis – and I seem to have more muscle/tendon pain that actual joint pain. So I don’t know the actual significance of that, other than my rheumatologist said it was just suggestive that there is a connective tissue disorder. It can be related to “Mixed Connective Tissue Disease”, but I think you have to have Raynaud’s for that diagnosis.

I had been feeling very calm/zen about things. And then for no significant reason I am feeling anxious again. My nailfolds are still red/puffy – the Plaquenil has done nothing there. I find myself looking at my hands all the time for changes. I had a scaly rash on the top of one hand that is still there a bit. Discoid? I evaluate my knuckles to see if they look red for dermatomyositis. One does…kinda. But that’s my trackpad finger for my computer….the whole finger is bigger than the same finger on my other hand. I mean – who looks at their fingers this much?

So I am trying to put it out of my mind the best I can, and just focus on the positive. I don’t feel fatigued. It hasn’t really changed anything for me, except for having to be very careful in the sun. Just try and be grateful for the now and not too focused on the what if.

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Upgrade to First Class

It was time for an upgrade. There is no point in putting your health in the hands of someone you don’t trust or have confidence in. Particularly as you get into complex, specialty care. I have learned there are few “easy answers” when it come to autoimmune diseases. Because even of the “named” ones, there is so much variability, so one persons constellation of symptoms of the same illness can be very different than another persons.

So I traveled several hours to a major rheumatology center. I had researched (hopefully better than before) and saw that the doctor really specialized in connective tissue disorders and wasn’t just an “arthritis doc”, as many rheumatologists seems to practice mostly with.

From the moment I met her, I liked her. She looked at my unusual nailfolds, with an expertise I hadn’t felt before. Said she looks at these ALL the time. We discussed what I had been experiencing. My concerns….fears. I remember her saying “don’t despair…..we have ways of treating all of these”. In my quest to figure out what is wrong with me, I have researched a lot. This is my mode whenever I am trying to figure anything out. When I went through infertility issues at one point, I probably knew more about labs, hormones, medications and the timing and interactions of all the these….than the average OB/GYN…..though not quite as much as a Reproductive Endocrinologist. Thankfully, the RE I was seeing at the time, was amused by my amassed knowledge. Not all doctors are. So I try to keep that on the down low. I did mention some antibodies I wanted to be tested for, and those were all on the list of ones she had planned. She had reviewed the testing I had already had done….and combined with other things, she felt that I did have a connective tissue disease, though was not sure what type. She thought it would be good if I started Plaquenil. My dermatologist had been saying he thought I should be on it. I was happy about this, as from what I had read the side effects were few and the benefit was reduced flares, symptoms and possibly preventing further disease progression. Although it would take several months to see if there was an appreciable effect. So…although there was no name what what I had at this point, I felt I was in good hands. That I didn’t have to second guess what she said and continue to research things with the fervor I had been, as she had that knowledge. She also recommended I see a dermatologist in the same city…..who had an expertise in connective tissue/autoimmune issues. I actually had already scheduled an appt with that same doctor, as that’s just how “forward thinking” (translation insane) I am. So, off I went to the lab and she’d contact me with results to review.

I won’t say I was completely calm walking out…..I still had some worries about what it might be….could turn into. But at least I felt, whatever it was I was with the right physician.

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So, I was able to get another local appt before the appt at the specialty center. I figured I might as well go….if I felt comfortable I could cancel the other appt. And if not, I already had it scheduled. I went to see rheumatologist #2 and he was very nice. Talked through my symptoms. Skin issues. Reviewed labwork I already had. And basically at that point just felt that I might have an autoimmune issue that had not yet “declared” itself and that there was nothing really to do at this point. There were no proactive or protective steps. Great. Then we talked about my nailfolds some more. He asked if I had the same on my toes. I said maybe one toe and he wanted to see. That same toe has a really icky fungus toenail that surfaced during my running days. As soon as he saw that he said “I know what this is! Psoriasis!”. Then he started googling pictures of fingers with psoriasis, which really looked nothing like mine. I had a follow up already scheduled with my dermatologist, so he wanted to see what derm thought of that. And that I could come back after that, though he wasn’t sure it was necessary. I was not feeling relieved at this point that I “just” had psoriasis, as I knew that wasn’t what was going on, though my husband thought this all sounded good.

Fast forward a week or two to dermatology. Dermatologist does NOT think it is psoriasis. He had previously given me a topical steroid for my scalp that was working well. I had stopped using it to see if that area would flare up again, and sure enough it did. I asked if he could biopsy it. So he punched a little hole in my head and sent it off to the lab. In a little less than a week he called me and said the biopsy came back as discoid lupus. And that the discoid alone should not cause the labs I had. And that he thought I should be on Plaquenil – a medication used for a variety of autoimmune and rheumatic conditions. And to follow up with rheumatologist.

I canceled my follow up with rheumatologist #2 and decided to proceed with rheumatologist #3.

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