Featured

Ever feel badly that you don’t feel badly? 

If you’ve been wondering where I’ve for the past year+, well, I’ve been here. I would think about this blog often and think of ways to write about what’s been happening. In fact I have about 20 drafts waiting for me to finish and post. *sigh*

So what’s been happening? Nothing much on the LUPUS FRONT is what!

I haven’t have a major flare in about a year. Sometimes, I don’t even feel like I have lupus because I’ve NEVER gone so long without having issues. Not to say that I haven’t had issues…not at all, but I’ve been blown away by how well I’ve been doing lupus-wise. So…I feel guilty for neglecting my blog, my Twitter account and all of the lupus-related things that are so important to me as far as being able to share my experiences and possibly help even one person with some of the issues that they may be facing.

Let’s rewind a teeny bit:

June 2016- I mentioned that my health seemed to do a lot better after my (mysterious, I know) “life change“. I’ve basically experienced such good health since then that I was able to focus on other important life projects.  I decided to do lots of things that I couldn’t have imagined doing in my younger life when my lupus was very much active.

I continue all the things I mentioned in my June 2016 post:

  • Practising daily meditation
  • Being present–I read another book: The Power of Now
  • reconnecting with friends

You could say that these have led me to enjoy a kind of social life that I never had before.

I have been out and about…A LOT! I have been able to stay out later and not feel too terribly fatigued or achy afterwards. Once I realised this was a NOT a fluke, I upped my socialising.  While I always remain aware of my energy and how I should pace myself (i.e.: not wearing crazy uncomfortable shoes and going to places that had seating etc), I found myself able to stay out longer and enjoy my surroundings and the people I am with.

Maybe all of this good health is an outward manifestation of my generally more open outlook on life.  So good…

But now,

I visited my rheumatologst recently for my regular 3-month checkup. I had been feeling quite fatigued to I already knew I was flaring. I had been flaring at the previous 3-month visit and went back on Benlysta (I will post something about this soon). I was a bit disheartened that I had been doing so well but for 6 months I was on a downward trend.

Featured

Revisit, revise, reset, renew (?)

It has been a long time since I’ve posted to my blog, and it is not for lack of things happening. That is not the case, at all. There has been A LOT going on in the background as it relates to dealing with lupus. As you may know, there is no cure for lupus right now and the nature of the disease keeps us (and doctors and researchers etc.) guessing when it comes to new manifestations and treatments. 

For me, since my last post (a billion years ago–ok, 3!), there are things that I am not ready to share just yet (although, I would LOVE to because these are important issues to discuss as it relates to #lupus, living with chronic illnesses, managing an invisible illness and being immunocompromised). However, I will share a very brief update. Part of it is just feeling like I want to give back (I did have a purpose to starting this blog in the first place), but also, given the state of the world, I wanted to share a few thoughts on navigating as someone who “looks fine” but has considerable worries.

Since my last post, my lupus, while well-controlled, is showing itself to (again) present new challenges.

 NOTE: I like to try and explain things more or filter searches for you, but this will have to do for now (sorry!).

Photo by Retha Ferguson on Pexels.com
Photo by Anna Shvets on Pexels.com
Photo by CDC on Pexels.com
  • COVID-19 – As many immunocompromised people who have been managing illness for a number of years, I felt ‘prepared’ to protect myself from contracting COVID. When anyone is sick at work (or anywhere around me) I’ve always kept a distance, washed my hands consistently, and otherwise been cognizant of exposure to communicable illness. Perhaps it is a function of that, as well as generally being a “homebody”, but staying at home is not a social problem for me. I don’t NEED to go out to socialize, even though I know cabin fever has set in for many people. I am glad to be moving, relatively free of physical ills to live my life relatively safely. However…my frustrations are many:
WEAR A DAMN MASK!!!
  • It’s been said…it’s not about YOUR discomfort, it’s to protect yourself and others. I don’t care if you feel fine! You may not know you are a carrier. You can be asymptomatic. Your choice to not wear a mask (say, in a store where it CLEARLY says you need it to enter) is a sign of disrespect and selfishness. There are people around you (like those managing chronic illnesses and those who are immunocompromised) who will be affected and potentially die because of your choice. There are many options for face coverings; do the research and find the one you like and can “tolerate”. I don’t want to die because of your discomfort. None of my people (i.e. chronically ill, immunocompromised) want to die because of your discomfort. 
  • I have been so angry listening to people talk about their rights to refuse to wear masks and throwing tantrums in stores. I choose not to go to stores primarily because of this stupidity, but I also have the luxury to order my essentials from home and to work from home. Many of us CANNOT stay home, and are trying to stay as safe and healthy as possible. 
  • I can gripe more about this issue….but I won’t.
Physically distance! Keep your circle small so we can get over this hump.
  • Is anyone else ASHAMED that we have not gotten over the first wave after six months? Is anyone else TIRED that because people do not heed the warnings that we will be in this for the long-haul? I understand people want to go out. I understand people want to socialize and live life as they had before. But this is not our current reality. Be flexible, which is something people who manage chronic illnesses have learned to do over time. Yes, many people are new at this, HOWEVER, you MUST learn to adapt. You MUST learn to listen to REAL EXPERTS! For the love of humanity…
Photo by Natasha Spencer on Pexels.com
  • (Hopefully) full recognition of the barriers and need for equal and comprehensive medical care.
  • Whether it is because of my personal health issues or my professional life trying to find ways to help people manage chronic illness (I guess that makes it personal, ha), I have known for years that being informed about how to take care of people is not and should not be solely on the shoulders of the “patient”. It takes:
    • Individuals (yes, the patient should feel empowered – this is a much larger discussion)
    • Family and Friends or other loved ones
    • Institutions – Wider community, resources, ACCESS (community design etc.), hospital management, staff, doctors, EMPLOYERS
    • Policy – ACCESS. HEALTH EQUITY. BASIC CARE FOR ALL PEOPLE

Photo by Pedro Figueras on Pexels.com
  • The Stress of 2020
    • Stress can exacerbate flares (at least that is something I’ve learned for myself). I have learned to meditate, to take time off, take more rests etc. over the years, but it has been hard in 2020:
      • COVID: (check)
      • magnifying glass on racial inequities in this country: (check)
      • highlighting the failure of the ‘system’ at multiple levels to acknowledge, address, and make change (check)
      • Everything else…(check check check check…)

I have so much more to say, but I was moved today for multiple reasons, including taking part in numerous discussions about societal inequities, poor access, lack of resources or confusion about how to access programs to help in hard economic times, having a disability (invisible or not) etc.

I hope everyone is doing well: managing ok and taking things day by day as you can. I hope if you were affected personally by COVID, that you are ok and taking steps to recover or grieve. I hope you are able to find the resources you need, be it financial, emotional, informational or medical.

While the current times are frustrating, and very hard, here’s hoping that there are good things happening in the background and that our resilience will shine through.

Peace and love.

Photo by Ylanite Koppens on Pexels.com

Why so “meh”? There are no answers today…

Hi. Remember me? Yeah, I’ve been quiet. It’s generally been a “meh” kind of life lately. Why? Let’s see…

The holidays were challenging and it was around this time last year that I spoke of my life change. I suppose it’s been a long time since then, but I feel much has not been accomplished even though I know that not to be true.

My lupus is still under control (gasp!)

I am off most of my meds and remain flare-free (where’s that wood I can knock on?). This is really great news. I  don’t think as much about limiting my activities to avoid a flare because things have been going well. Heck, I am even saving money. I am paying off my infusion hospital bills, and there are no new ones to worry about. SHOCKING!

I haven’t even had a migraine in about 3 months.

screenshot_20170220-105338

I should be celebrating, but I’m just 

Fitness goals

I did my first 5Ks last year (walking, of course). That was exciting. I was able to get my times to less than 15 minute miles for at least two of those races. Check out my accomplishment wall! img_20170221_182936

I’d like to do more, but I’ve been feeling “meh” about searching for another 5K lately. I signed up for one taking place next month, but sadly I cannot go. I’ve lost my mojo and therefore…

There goes my momentum.

Wellness goals

Meditation was going really well last year, and then I missed a few days. Eventually it dropped off. I am back on a 30-day+ streak, but it’s been less of a priority and I seem less focused. Why? I’ll get to that…I think.

screenshot_20170220-110013

Searching for the Little Wolf Hunter 

I certainly let this blog and my whole “Little Wolf Hunter” social media stuff go kaput.

Inspiration: down. Creativity: poof (gone). Stamina: non-existent (believe it or not, it takes energy to do this).

Why? Like most things at the moment, I am just feeling “meh”.

So how do I get over “meh” self?

No idea. Hence “there are no answers today”. Obviously my mood is down. While I think the holidays may have been a trigger, I had/have all the “tools” to manage those stressors. And sure, I’ll tell myself (and tell anyone this):

  • nothing has to be perfect,
  • give yourself a break
  • just go out and do it…

But that never seems to be the answer or doesn’t seem to be possible when you are 

Funny enough, I was just on Twitter, participating in #SpoonieChat and there were topics about self-talk: namely, in what voice do we spoonies speak to ourselves (positive, negative or “meh”) and in what voice do we speak to others. I find it curious this came up when I had been working on this “meh” post for a few weeks and I generally reserve my positive talk for others.

My solution…in reality, I think I need to hit the ‘reset’ button and take a nice, long vacation. When you Google #vacationgoals, this is what happens:vacationgoals

That’s what I’m talking about.

Thanks to @BonnieBarnes48 for making me finally publish this post. 😀

Speaking of family

Maybe I’m being sensitive, but twice this week I’ve been asked: 1) are you married? 2) do you have kids (followed by: why not?). These are questions that many women (I don’t know about men) are asked all the time, especially after you are a ‘certain age’. The Holiday season is upon us and…well…these topics are bound to come up. I’ve been thinking about posting on this topic for a while but the recency of these inquiries just pushed me to finally write about it.

It’s hard to be a woman with a chronic illness for a myriad of reasons and planning for a family is no exception. As women, we are encouraged to have it all, but many times we don’t really focus on fertility. We focus on the career, the money, the relationships, and the idea that in the “distant” future, we’d be better poised to begin a family. We’ve had the plan of getting married in our 20’s or early 30’s and having kids by age 40. However, when we get to the ages where we would reach these self-imposed (or socially-imposed) milestones, we make a new plan until we need to make ‘adjustments’ to those milestones (again).

due-216869_1280

I know I am not alone in this. It is also more complicated for those of us who have chronic illnesses because we need to consider:

  • physical limitations – in the case of lupus, due to the unpredictable nature of the disease and resulting medication changes, it’s hard to really plan for something that requires your attention on creating a new life. In the case of lupus, it is best to be flare-free for as long as possible in order to maximize the possibility of pregnancy, to avoid miscarriages and in consideration of your (and baby’s) health in general.
  • medications– many meds for lupus are not pregnancy -friendly. They are contraindicated so you need to work with your doc to slowly get off of ones you can’t take before and during pregnancy. You’ll need to discuss if there are pregnancy-friendly options and have a ‘trial-run’to see how you do with the pregnancy-friendly options. I wrote about this last year on how I began working with my doc to prepare my body.
  • money– we already have medical bills, medication costs and the like, so planning for a family (in whichever form you intend to do so) needs to be considered as well. For example: Can egg freezing be covered by insurance?

I wish I knew to ask about these things when I was in my 20’s, although it wouldn’t have changed much of anything in terms of my having a family at that time since I was newly diagnosed with lupus and having a lot of difficulty. That said, perhaps this is where we and our medical providers can be more proactive if this is something important to us:

Just a few questions to consider asking your medical provider:

  1. What options do I have for treatment of my illness and how do they affect my fertility?
  2. Should I undergo some tests now to check my fertility status?
  3. Are there any resources for me to check out  such as support groups, insurance coverage for fertility preservation?

I could go on and on, but here are some links with more information and you can go from there based on your own situation:

Chronic illness and fertility: http://www.babycenter.com/404_what-chronic-illnesses-can-affect-fertility-and-why_6147.bc

Preserving fertility: http://www.savemyfertility.org/fact-sheets/preserving-fertility

Lupus and pregnancy (Lupus Foundaiton of America): http://www.lupus.org/answers/entry/lupus-and-pregnancy

Lupus and pregnancy (WebMD): http://www.webmd.com/lupus/guide/pregnancy-lupus#1

There are many different types of families and ways to go about it:  http://www.path2parenthood.org/

Nothing is ever perfect or able to be planned but we can be aware of our options and feel empowered to take the necessary steps when we can. As for those questions from nosy family members at the Holiday dinner, well, I guess you can always hide in the bathroom.

Invisible Illness Awareness Week

Recently we had Invisible Awareness Week (September 26-October 2) and now we have Invisible Disabilities Awareness Week (October 16-22). While these are (probably) technically different issues, the fact that “what you see is not what you get” is getting some attention is a win for any of us who have them. I’m going to refer to invisible illnesses throughout this post.

Having an invisible illness a full-time job. Lots of other spoonies recognise this constant jugglgirl-357729_1280ing of daily/weekly/monthly (hourly) things, while others on the outside don’t.

We know that invisible illnesses require…

  • vigilance
  • patience
  • planning
  • and maybe making some sacrifices (or changes) in order to be as healthy as possible.

It is hard for those without invisible illnesses to see how hard we work:

For starters, we are (probably) really productive and on top of things. That’s because we have to be. To handle a chronic and invi
sible illness (like lupus), we eventually become well-versed in our illness and what needs to be done to manage it. We’re professionals. Professionals in researching, planning, managing and handling these and other “regular” things like household duties, children (furry or not) and on and on. So yes, we juggle a lot.

We do such a good job of being productive and juggling that others forget we have an illness (heck, sometimes WE forget!).  I mean, how many of us have to keep track of:

  • medical billsworried-30148_1280
  • appointments
  • doctors
  • medicines
  • side effects
  • symptoms

…for each illness (I have three: lupus, sjögrens and raynauds)?

We downplay the pain or effect our disease has on us. Part of it is that our pain is different from ‘regular people’pain. Our pain level of “3” may be a “9” to the regular folk. We may say we’re feeling good, but that could still mean we’re not well…but perhaps better than we have been in the past. We just suck it up and move on (if we can). This phenomenon was highlighted in a recent article showing that patients with lupus downplay the effect lupus has on their lives.

We don’t want to be a burden. Most of the time we can do things in our own. But when our illness begins to rear its ugly head, we are sometimes reluctant to ask for help, or feel badly for having to cancel plans.

So, happy invisible ‘something’ awareness week. If you have one, perhaps this is a good opportunity to share your thoughts and experiences with close friends or family you trust and who might not quite understand what you’re going through.

Thank you, caregivers!

So much for keeping a blog schedule! I already had a post (mostly) written for the Thanksgiving holiday, but honestly, my attention to many things in my personal life has been lacking. I’d still like to share the post I wrote for Thanksgiving (two weeks later), but this is generally the season of giving so it remains relevant.

…

So let’s talk about a kind of sensitive topic for many of us living with chronic illnesses (especially invisible illness). The fear that we are a burden to others.

If you are a caregiver or friend, loved one etc. of one of us spoonies, you may or may not have had to assure “us” that we’re not a burden or…..well, you may feel we are a burden. Here’s the siutation…we sometimes do feel we are a burden and wish we didn’t have to involve you in our issues, but there are things we just have to deal with and we like and appreciate your support.

We understand that you may have conflicting feelings about our illness, what it means for us, what it means for you, and if you should help us or not and in what capacity.

On our side of things, we are the ones with the pain, or constant doctors visits, or medicines, so it’s certainly on us to be in charge (we just gotta do it to be well!).

When we are first diagnosed, we are doing our best to figure everything out. You may have been involved in the figuring out process, but I’ll bet, more often than not, we’ve kept most of that to ourselves. Why? First off…it’s a lot of information we’re trying to absorb. We don’t want to scare you (even if we are scared) and we don’t want to give you bad information! We also don’t want to be seen as complainers.

These early days may also be more challenging for us as we get used to doctors appointments, medicines, and feelings we’ve never had before. We may be more frazzled or constantly sick. You may have had to take care of us in a different way than you imaged or even wanted. We’re sorry. We don’t want to be a burden. It’s just our reality and not our choice. Our choices rest in figuring out how to best deal with and how best to fight to have as normal of a life as we can.

As time goes on and we’re more experienced with our illness we may tell you more about how we feel (physically, mentally) or what we are dealing with (i.e. finances) because…maybe we think you are used to it by now and you can handle it because we’re handling it better. This can be a poor assumption on our part.

On the other hand, we may also try to over-educate you in order to alleviate your fears or anxiousness about our illness. You might get tired of hearing about our ‘problems’ and may get annoyed, exasperated or just plain cease to care and brush everything off.

We understand it can be hard for you, and please understand that it’s not easy for us. We appreciate your patience, your support, your questions, your frustrations and your care. So in this season of giving I’d like to thank you caregivers for giving what you can and we hope you know how much we appreciate you.
 

Tah-Daaaaah!!! I did a 5K!

img_20160925_095628I completed my first real 5K last Sunday. I say ‘real’ because it was a timed race! As I’ve written about in my blog, I’ve been doing a lot of walking lately and done some ‘practice’ race walks, so
IMG_20160726_012435_picmonkeyedI figured this would be a great way to cap it off.

First off: What an accomplishment! I finished in about 45 minutes, which means I basically walked 15 minute miles. That’s pretty darned fast, in my opinion. It was challenging and I came in dead last…but I swear there were some people who didn’t finish (not that many people passed me when I got to the two mile mark and I know there were people I passed…).

Next…well…

On Monday, I was hurting. In pain and stiff. Thought process: uh oh. Did I trigger a flare? I have to get ahead of this. I need to rest, take a good hot bath. Use Epsom salt etc.

and so I did just that.

On Tuesday, I could barely walk. I went to work but the pain and immobility were similar to the hip pain I had before my hip replacement. Thought process: OMG, I messed up my hip replacement! I called my orthopedic surgeon’s and rheumatologist’s offices. I was instructed to rest, ice, take an anti-inflammatory and call back if it doesn’t get better in a few days. Panic somewhat alleviated, I started all the above and did a little internet research (to see if I was panicking for nothing). In my search, I read about Iliopsoas Bursitis. From what I read, I felt a little comforted that I may not have messed up my implant.

NOTE: Please don’t run to the internet to self-diagnose. Always consult with your doctor!!! Also, I was unable to find a link that ended in .org, .gov or .edu. These are usually good sources for information. Read an article about how to evaluate good health information online here. … Full disclosure, I had a hand in writing it. 🙂

Wednesday: PHEW! Things are much better. I did the whole regimen: rest, ice, Aleve and I added my (blinged-out) cane.  I think I’m good. 🙂 img_20160928_211708

So, I will continue to walk. I have my Lupus Walk on October 15th (not a race). Here is the link to my personal fundraising page if you want to walk with me and Hospital For Special Surgery’s Rheumatology Division or donate.

My next 5K? Hmmm, maybe a Turkey Trot around Thanksgiving. Maybe. Gobble gobble.

turkey-1460850_1280

Thank you!

Since my last post, I found out that I was nominated for a WEGO Health Activist award for “Best Kept Secret”. This is very humbling and strange because I generally think no one knows about the little wolf hunter!

I have no idea who nominated me, but it is really appreciated. It lets me know that I am putting out helpful information about lupus. The awards are part of the work of WEGO Health, a network of thousands of patient influencers, with the goal to:

  • Recognize patient influencers who have become leaders among leaders
  • Connect patient leaders to each other, across conditions and platforms
  • Give a big “Thank You” to all the leaders impacting their livesBest Kept Secret

We have just entered the endorsement phase and it would be great if you could endorse me. You can vote daily, so if I have inspired you to learn more about lupus, or if you’ve found my tips for managing lupus helpful or if I have helped you support someone with lupus–whatev- please vote for me!

http://awards.wegohealth.com/nominees/12559

Thanks so much for your support!

 

A journey and many discoveries

As we go through life, there are many things we push aside in favour of prioritising what our lives are ‘supposed’ to be. At some point we realise that we’ve forogtten to enjoy the person we are, to appreciate life in the moment… until we finally decide to do something about it. Many times we only get this this point when we are pushed to the edge by some drastic or dramatic (usually negative) circumstance.

I haven’t posted very much over the past few months, but I’ve been busy. I’d like to share a snippet of what I’ve been up to:

1.4 million steps Fitbitdata
180 days of meditation Screenshot_20160825-083304
Some insane number of boxes/bags of stuff donated or trashed man-30322_1280
4 inches (maybe more to go?) 2016-06-12 (8)
6 months with no flare!!
2 walk ‘races’ (planning on doing more!) IMG_20160726_012435_picmonkeyed
DIY projects completed  IMG_20160726_012300_picmonkeyedIMG_20160528_150934

IMG_20160327_123951_picmonkeyed

IMG_20160327_124009_picmonkeyed

IMG_20160822_201345_picmonkeyedIMG_20160822_201345

Journey of self-discovery
From Wikipedia, the free encyclopedia
https://en.wikipedia.org/wiki/Journey_of_self-discovery 

The term “journey of self-discovery” refers to a travel, pilgrimage, or series of events whereby a person attempts to determine how they feel, personally, about spiritual issues or priorities…The topic of self-discovery has been associated with Zen. A related term is “finding oneself”.

Can a bad thing can be the best thing for your health?

Again, it’s been a long time since I’ve posted here. My emotional energy has been so depleted for the past few months that I could never bring myself to share “doom and gloom” with you.

In my last post, I shared a bit about a life change I was going through and trying to figure out how to be flare-free while dealing with stress I couldn’t control. I’m glad to report that I am STILL FLARE-FREE and that physically, I haven’t felt better in a long time. I am still taking all of the same meds in the same doses, but my body is being kind to me. My labwork is even awesome. It’s still not all normal, but no flares and boring labwork is always a win.

So I got to thinking…ok…was someone (or something) trying to tell me I needed this change?

For all my “expertise” in managing my lupus, there was a part of my life that I guess I overlooked as a major stressor. I didn’t recognise it. For the past four months, I’ve found the following helpful in trying to find peace:Screenshot_20160619-173344

Learning to be present: I practice meditation every day.
I am not very good or consistent in my concentration, but between meditation and a book (The Untethered Soul) that a good friend recommended to me, I am working on shutting out the negative voices in my own head and taking each day as it is.

Walking just about anywhere: Walking has been a great release for me. These days, it takes a lot of energy for me to walk into the gym, change, do HSStoHarumy routine, etc. Don’t get me wrong, after I’ve worked out, I feel great! I feel strong! But lately, in order to deal with things, I take a walk.

Example: I walked from the Hospital for Special Surgery where I had my infusion to dinner with a friend at Haru Sushi. That’s 70th street to 18th and Park Avenue South. I did 17,000+ steps that day! (I love my Fitbit)!

Reconnecting with friends: The first two points show how important it is to have friends. Even if you haven’t seen each other in a while, it’s a chance to hang out with good peeps. Sharing stories, giving/receiving advice, eating or having a cocktail, and generally enjoying each other’s company. teddy-1361396_1920

Being open: In reconnecting with friends, I’ve decided to open up and not keep to myself so much. I figure that I might as well share my feelings and be a sounding board for others as well. It feels good to get things off my chest and it’s awesome to have others trust me with their experiences as well.

Learning to stand up for myself: This is a tough one. This involves me not being fearful that if I say something someone doesn’t like they will reject me. It has been absolutely terrifying to say things directly and strongly or even yell at people I hold very dear to me, but not doing those things and holding things in was bad for me emotionally and physically.

So, I’ve been doing a lot of inner work over the past few months. I certainly can’t say that I’ve done any outer work because my apartment is a HOT MESS!

…the journey continues…