TOLD YA!

Something to consider…In 2017, after being rushed to the ER and experiencing all kinds of random pain, swelling, etc., I had my last-straw experience and decided to try to find out what was wrong with me. The PCP at a clinic I was going to chalked it up to anxiety. Anxiety. 🤦🏾‍♀️ (That’s why I hate mentioning my history of anxiety and depression on forms because they tend to not go any further.)

Anyway, after testing positive for Sjogren’s through bloodwork ordered by a NP, a rheumatologist that I went to later didn’t trust the test results. She ran a different kind of test that made her determine that I didn’t have it. Hmph.So, after switching to a rheumatologist that’s 45 minutes away, she believed the results, called the other doctor “textbook” and started a treatment plan.I was glad that I found a doctor who would listen, but I kind of wondered if I actually had some sort of unspecified autoimmune issue and not Sjogren’s.

Then…Guess who just tested positive for Sjogren’s as well? My older sister.

BOOM! 💥

Now I no longer have doubts, and I get to help my sister out on her own journey.I am sooooo tempted to write both of the doctors who doubted me and tell them why I’m not losing it. 😂

The end.

Changes

About six weeks ago, I started working full time again – something that I thought I lost the capacity to do because of my health problems, but so far, I haven’t collapsed yet. Fabulous, huh?

Thankfully, it’s a desk job, so that helps me to even out my energy.

I made some major adjustments to prepare for this life change, including:

Purging my wardrobe. I reduced it by at least 50% and I still have a lot of items. What I do now is as I wear pieces, if I find a defect or it doesn’t fit well, out the door it goes.

It’s all about that “spark joy” stuff that professional organizer Marie Kondo talks about. I’m gradually changing the habit of hanging on to things out of guilt or obligation.

Next, now that I can see my clothes better, I pick out my work outfits for the week so I don’t have to think about that – or iron – every weekday. I am NOT a fan of ironing.

Finally, I have joined the world of meal prep. I cook my lunch for work for the week and put them in containers. Now I just stuff the container in my lunch bag and head out the door.

Talk about feeling like a responsible adult. 🙂

I certainly hope that I can keep this up. They say that it takes 21 days to form a habit and it’s been more than that, so I anticipate sticking to these changes.

Boob Trouble

I’ll fully disclose at the beginning that this post talks about breasts, so if that freaks you out, you can stop reading now.

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Now, to the rest of you…

In December, I came across what felt like a boil on my right breast. It was on the areola where one of the glands are. I found it by accident when I was bathing and bumped against it, so it must have risen pretty quickly. It was painful to the touch, and I could feel a lot of firm swelling beneath it. Over time, this bump filled with pus and began to ooze. I decided to keep an eye on it and let it do its thing. The oozing stopped, and the bump began to dry up and scab on its own. It seemed to be healing pretty good, but I decided to call my OB/GYN just in case. The receptionist scheduled an appointment for me to come in so the NP could take a closer look. By this time, the bump was a 1-2 cm lump with the top layer of skin missing, but there was no pus.

The NP evaluated the lump and said that I had developed an abscess due to a staph infection that I got from one of my bras. WHAAAAAAAT?!?!?!

Now, I admit that I had a couple of favorite bras that I wore a lot because they were comfortable and black, which you can wear under anything. I never thought in a million years that any of my bras would stab me in the…boob. Et tu, Brute?

Well, this was the NP’s advice:

  • Throw away all of my bras. ‘SCUSE ME?
  • Replace them with only white bras.
  • Wash my bras once a week in hot water with bleach.

First of all, I DETEST white bras because they show under some of my shirts, especially T-shirts. That means that I’ll have to wear tank tops under my shirts. Ugh. Right after I left the office, I went to the store, bought a white bra, drove to work, changed my bra in the bathroom and tossed the old bra in the trash – in a plastic bag of course.

On top of that, she said that she was referring me to a breast surgeon to clean out the rest of the abscess. SURGEON? Uh, I was expecting all of that, but anyway…

As I waited for the day of the consultation, another abscess began to develop under my breast right where it meets the rib cage. Fortunately, it didn’t get very far and just left a dark scar. Eek.

On the day of the consultation, the surgeon and a colleague of hers looked at the abscess and said it was healing well enough where I didn’t need surgery. Dodged a bullet there.

They recommended that I use a body wash for sensitive skin as it continued to heal, which I am doing now. The lump has flattened further, so I think I’ll be fine.

I got some advice in a Facebook group I’m in that I could use a laundry sanitizer or bleach for colored clothes so that I don’t have to wear only white bras. I like the sound of that!

So, now you know. Wash your bras, people. Replace them regularly so they don’t build up germs. And most of all, check your boobs for weirdness. Hope you learned something.

Low-carb Adventures

Happy New Year! I took a few months off from blogging to focus a little more on self-care, and I did so by finally doing what my rheumatologist told me to do months ago: go on a low-carb diet. I had been hesitating for some time because I assumed it would be too expensive for me to pursue at my current income level. However, I was invited to join a keto group that piqued my interest.

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The funny thing is about getting started was that I decided to start for the sole purpose of proving that I wouldn’t be able to afford to continue. That was in September 2018, and I’m still doing it, so I was wrong as two left shoes.

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There are different types of low-carb diets, and after reviewing the versions of the keto diet, I decided to go with LCHF (low carb, high fat). Attempting strict keto turned out to be entirely too stressful for me. I didn’t like counting macros, I tend to make up recipes that wouldn’t be listed in any carb-counting app, and there were times when I had to make some exceptions for financial reasons. (For example, most of the food I eat isn’t organic and I have never purchased avocado oil because I can’t afford it.) To be honest, I’m not trying to get into ketosis, and I have never checked to see if I was, either.

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Yeah, that’s right. For the strict keto follower who may be reading this, I apologize in advance for offending you, but peeing on test strips just wasn’t for me. Anyway…

What I do is aim for keto-friendly meals and snacks most of the time. I generally avoid sugars, starches and grains as well as most fruit and legumes. I do indulge in carbs here and there, but it’s a conscious decision rather than just mindlessly eating pretzels while on Facebook like I used to do. I also designated Saturday as my cheat day to keep myself from feeling deprived. (I jokingly call this a keto sabbath.)

Have I lost weight? Yep. Dramatic weight loss? Nope. I prefer to lose weight slowly to improve my chances of keeping it off. As of today, I have lost 17 pounds since I started this low-carb journey. It still amazes me that it happened because some of the meals I make don’t feel like I’m on a special meal plan at all. I had fun experimenting and reading about low-carb recipes online. Here’s some of the foods I made with a full disclaimer that I am not a food stylist:

Thanks to recipe tips from keto groups, Pinterest, YouTube, keto websites and just Googling, I was able to find lots of ideas, some of which I tweaked because I didn’t have all the ingredients. (Xanthan gum is still on my wish list.) However, here’s the Cheesebuns recipe I used for my pizza crust, although I also add 1/2 tsp of baking powder to mine:

cheesebun recipe

I still have a long way to go with the goals of reducing chronic inflammation and getting back under 200 pounds, but I have begun to see a difference. I imagine that I will continue this way of eating in some form for the rest of my life so that I can keep my health in check. After all, doctor’s orders.

inflammation test results

I Have Limits

It’s easy to allow life to suck you in and you begin to neglect your own needs – at least for me, anyway.

Whenever I take on doing work or helping someone else, I throw my everything into it, sometimes to the point of making myself ill because I become emotionally invested in what I do.

That ends now.

I mentioned in my debut blog post that I struggle with anxiety and depression, and one of the ways that those illnesses tend to rear their ugly little heads is when I feel like I lack autonomy. I don’t like to feel as if I am being controlled in any way, shape or form. Feeling trapped is the easiest way to send me running.

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Last week, I had reached the point where I honestly felt like I would have a nervous breakdown, but what kept me together is remembering that I can’t afford another medical bill, I don’t get paid leave and I don’t have an emergency fund. In other words, I couldn’t afford to crack up, so I didn’t. Good times, good times.

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That low point made me decide to find more ways to reduce stress in my life and focus more on my own endeavors. I want to actually act on my ideas and not just think about them because I’m too drained to do anything other than what other people want me to do.

A friend of mine passed away recently, and what I remember the most about her was her zest for life. She lived her life out loud, and fear was not in her vocabulary. I can assume that I will live to be 96 like my paternal grandmother, but my friend’s death was a reminder that it’s not a guarantee. Therefore, I have to act now while I still can. The universe is depending on me to carry out my purpose and make a difference, so it’s now or never.

Cheers to change.

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The Activities of My Limbs

Growing up as a “pew baby” in church, I often heard people say during testimony service that they were thankful for having “the activities of my limbs,” meaning that they were thankful for independent mobility. I’m thankful right now that I don’t necessarily have to have a cane, etc. to move around, but for how long?

I found myself cutting back on activities that involved a lot of walking due to fear of pain, but I also recall my rheumatologist telling me that moving around would actually help with pain. For real? How can moving help my pain if it hurts when I move?

huh

I couldn’t see the logic behind this initially, so I decided that whenever I moved a lot, I could mentally note how much agony I was in and prove that moving wasn’t good.

Well…

I’m not quite sure how to explain it, but I’ll try. I traveled to New Orleans for several days for a convention, and I not only had to walk from one meeting room to another, hop on the escalator frequently, catch elevators, etc., but I also walked quite a bit downtown for dining and entertainment – IN THE SUMMER HEAT. I was certain I would die, but I didn’t. Imagine that.

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The weird thing is even though my feet swelled up and my arches were on fire, the endorphins still kicked in. I was in pain and felt good at the same time.

 

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The following weekend, I went with my family to a water amusement park. I figured this would be a good experience for me since my neurologist recommended that I take up water aerobics. Other than almost drowning while being thrown off a floatie while exiting a water slide, I had a great time in the water, giving my knees and back a break as I hung out in other less dangerous areas.

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I learned from these experiences that in order to be more physically active, the following things would help me to carry them out:

  1. Walking with a buddy.
  2. Getting in the water for a good, low-impact workout.

I’m actually still sore now, but it’s the good kind that you get from something like working out in the gym for an hour. I actually feel pretty proud of myself for taking this all on. I rock more than I thought I did. 🙂

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In the middle of a sunrise walk in New Orleans. I’m on the far right. Notice that I am wearing my Sjogren’s syndrome medical bracelet in case things didn’t work out that day. LOL

Thawing Out

Easter snapped.

I’m not sure what is going on with spring this year, but it needs to get its act together. Just when I think my achy joints will get relief from the cold, the temperature dips.

Not. Cool.

At least the Plaquenil is starting to kick in. I don’t feel as fatigued as before. My insomnia continues, but the bouts are starting to shorten. Cutting back on coffee (ugh) and naps (UGH) did help.

Just a brief check-in until “sprinter” ends. See ya.

Happy New Year?

Gosh, I didn’t realize that I haven’t blogged since October! As Ricky Ricardo would say, “Let me ‘splain…”

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You’re not that angry at me, right? 🙂

  1. I took up a work-from-home customer service job which required 10 weeks of training. We’re talking five nights a week for five hours at a time if you exclude lunch and breaks. I finished my training in December, and after two nights doing said job, I resigned. I realized that the call center life is way beyond me now, even if it is at home.
  2. I needed to finish graduate school. I was supposed to finish in August, but thanks to illness, I withdrew a few times. Nevertheless, I persisted. Now I’m just waiting for my MFA degree to come in the mail.

Somewhere during all this madness, stuff happened.

I did get a lip biopsy for Sjogren’s, and it came back negative. However, my new rheumatologist’s interpretation of the results is that it only shows that the Sjogren’s hasn’t affected my mouth, which may be why I still have teeth. (It is common for people with Sjogren’s to lose their teeth.) She also brought up my weight again. I told her about my budget limitations, and she suggested that I try a HelloFresh subscription. That still seems expensive, especially now that I am looking for another second job, so I have yet to try it. I did get a coupon last month, so maybe I can just get a week’s worth and try again later.

One thing she did bring up is my elevated rheumatoid factor and C3/C4. She says it looks as if I am in the early stages of rheumatoid arthritis, and the RA may show up in my bloodwork in the next couple of years. Yay, me. Anyway, I’m not surprised. It takes effort for me to get out of bed in the morning because I am so stiff, and I always feel a burning sensation in areas like my shoulders. I also had a lot of joint pain thanks to the unusually frigid temperatures in my area.

I was supposed to start taking Plaquenil last month. However, I am waiting for the eye doctor to give the go-ahead for it. Since Plaquenil affects the vision of some people, I had to get a baseline evaluation, and I can get the prescription once the rheumatologist receives the results. I had to come in and do extensive testing, which was kind of like…

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My follow-up with the rheumy is in a few weeks, so I hope I’ll get to try the medicine out before I come back.

In other news, I’m thinking about featuring people on my blog who are also combating an autoimmune disease. This may require buying a domain, etc. to give me more flexibility, but we’ll see.

 

Too Real for Fiction

Soooo…where do I start?

First of all, I got the X-ray results from my NP after complaining about lower back pain and almost coughing up a lung in her office. The X-ray of my lower back did not show anything, but the chest X-ray revealed that I have mild scoliosis in my upper back. They weren’t even looking for that. What the…

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Anyway, I was referred to a neurosurgeon for further evaluation. She saw the scoliosis and pointed it out to me on the X-ray. She also said it was mild, and you can see a subtle bend.

My older sister has the same condition, but hers was discovered when she was a teen.

Since I was still having lower back pain, she ordered an MRI, which I almost fell asleep on thanks to the smooth jazz coming through the headphones, but I digress.

Well, it turns out that in addition to mild scoliosis, I also have lumbosacral spondylosis without myelopathy. In English, that means that I have arthritis in my lower spine. Two of the vertebrae down there have bone spurs that are compressing against my nerves, which explains the peripheral neuropathy in my feet and occasionally my legs. The neurosurgeon told me the following:

No heavy lifting – nothing over 15 pounds. There goes my dream of being Wonder Woman.

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Start light exercise such as walking, yoga and water aerobics to improve my symptoms. I can do the walking since that’s free, but the other stuff will have to wait until I have some money. Well, I can go on YouTube for the yoga for a while. I used to yoga a few years ago, so I can add that back to my list of favorite things.

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Physical therapy. I start that next week. This will be my second time, the first being for my neck and shoulders to help with my migraines, so let’s see how this goes.

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Guess what? Once again, my older sister has the same thing. I’m surprised she hasn’t yelled, “STOP COPYING ME!”

Now that I confirmed that my back is raggedy, my next step was to follow up with the rheumatologist I saw a month ago about Sjogren’s syndrome showing up in my blood work. She said that I tested negative on the blood work she sent to the Mayo Clinic, so she doesn’t believe that I have an autoimmune disease. Huh?

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Well, at least I still got the shot for bursitis in my other hip. Maybe I can walk kind of evenly when the meds kick in.

I belong to a few Sjogren’s groups on Facebook, and many of them said that their results came back negative in a blood test only to later show up as positive in a different test. I’m not fully convinced that I should assume that the previous results meant a false positive, so she said she would refer me to an ENT for a possible lip biopsy. I am also considering a second opinion as well since I was told by other group members that other tests are available. Autoimmune disease is nothing to play with, so I would rather be safe than sorry and exhaust all avenues before assuming that I feel like crap for other reasons only (depression, sleep apnea, arthritis, etc.).

Well, I am thoroughly confused at the moment, but the journey continues. Maybe I’ll get a definite answer at some point as to why all of this is happening to me (other than aging), but it looks like it will take a little longer to get to the bottom of things.

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The hidden predicament of ‘too sick to work; too ‘undiagnosable’ to get any assistance.’

.”What if they don’t find anything?”
That’s all I have been thinking about after having about eight or so vials of blood drawn yesterday. I’m so used to being told, “Everything looks good,” that I have already started to mentally prepare myself for that possibility. Insomnia came in handy this time because I happened to see this blog through a Facebook post. I do agree that years of stress can physically break you down, so if my test results come back saying that nothing was found, I will assume that I have a bad case of Raggedy Life Disease.

New Shoots

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Woe betide the person who develops a chronic health condition that has no name and which doesn’t show up on conventional health tests. You are about the enter a hellish realm of being seen as a lazy, antisocial, hypochondriac – and thats just what your doctor thinks of you. Your friends and family will become tired of you and your one subject conversation and you’ll start to not bother mentioning it; which will further cement the notion in everybody’s heads that you are making it all up and in reality you are living it up on the couch at home watching YouTube videos all day while they’re all out paying taxes.

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