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?

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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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Closer to an answer

Well, my rheumatology visit went very well. She was very nice and attentive. I told her about the symptoms I have been having throughout my adult life, and in addition to the test results that were sent to her, I brought the results from the previous GP I was seeing in 2016. Based on her analysis of both results, she wanted to do her own bloodwork to determine if I had Sjogren’s since the positive ANA on the most recent test (75% accuracy) was so low (1.1 out of a normal range of 0.0-0.9). The test done from the previous doctor (95% accuracy) did not give a positive ANA, but as we know, one can be seronegative and still have Sjogren’s.
 
She also said that the dry eyes, dry mouth, etc., could be caused from the antidepressants I have been taking over the years, and though I have joint pain and fatigue, I don’t have other symptoms she usually sees such as hair loss, rashes, etc., and I have osteoarthritis instead of an inflammatory type of arthritis. She made sure to say that none of this doesn’t necessarily mean that I DON’T have Sjogren’s, so I appreciated that she kept an open mind.
 
Instead of sending my blood samples to a local lab, she’s sending it to the Mayo Clinic for a full autoimmune panel. YES! Even if it is Sjogren’s, isn’t Sjogren’s, or is something else that I haven’t even thought of, at least I can finally find out. Now that’s what you call a REAL DOCTOR!
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She even asked me twice if I ever saw a rheumatologist before, and I told her no. I guess she was surprised.
 
I will see her again in four weeks, and before I left, she gave me a shot in my right hip for pain. I have been having pain in both hips which she diagnosed as bursitis. I will have the left hip done when I go back.
 
It feels good to be getting closer to an answer. I have also considered the possibility that thy may not find anything and I’ll have to start over with a different specialist, but at least I’ll be finally narrowing my choices down. Regardless of the conclusion after the lab results, at least I can stop wondering what in the world is going on with me.

Hindsight

Hindsight is truly 20/20. A couple of days ago, I remembered that there was something off about my blood work last year that did not point to anything specific, so I decided to retrieve the results and look at anything that stood out. I pulled out what I found interesting and put it in Excel.
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I had a sedimentation (sed) rate that was higher than normal, and my white blood cell (WBC) count was on the high end even though it was in range. The mono and lymph numbers are also high but within range. I don’t know what’s normal for an ANA titer, and I can’t even tell if they did the ANA pattern IFA test. (I was diagnosed with Sjogren’s syndrome this year with a positive ANA test.) I just see lots of foreshadowing here.
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At the time of the test, I remember feeling tired but generally well, but I did lose some weight and lower my cholesterol, so I probably didn’t sound off any alarm bells in the doctors head, especially since I told him I was losing sleep from working a lot. I see now that I was working a lot in spite of how I was feeling – just pushing through.
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I will definitely be sharing this information with the rheumatologist next month.

Stubborn

Friday, I had to go to the store to pick up my prescription, and my lower back was bothering me. I thought about getting one of those scooters with the shopping basket on the front as I walked across the parking lot, and I happened to see one on my way in, but for some reason, I walked past it as if I was supposed to have it. Instead, I got a regular shopping cart and leaned on the handle for support.

The following day, I decided to stop by the Mississippi Book Festival, but before I left home, I remembered the cane that my mom keeps in her room for emergencies. I could use it just in case I ran out of steam before I got back to my car, but instead, I left the cane and chose to use my umbrella instead.

Why do I keep doing that?

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Is it because I think people will judge me since I may not need a mobility aid every day and they’ll think I’m faking if they don’t see me with one all the time? Is it because I think I’m too young? Am I embarrassed? Am I full of pride?

I don’t know what the answer is – it could be all of these for all I know. One thing I know for sure is that if I am going to be an advocate for those who have chronic illnesses, I cannot be ashamed of my own. Therefore, if you happen to see me out and about riding one of those shopping cart scooters or sporting a cane, I will not hang my head in shame. Instead, I will smile and wave like the queen I am.

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Waking Up Mississippi

When I got my diagnosis of Sjogren’s (SHOW-grins) syndrome, an autoimmune disease in which the immune system starts off by attacking moisture-producing glands (think tears, saliva, etc.), but causes a myriad of other debilitating physical symptoms that can become progressively worse (5% percent of patients develop non-Hodgkin’s lymphoma), I was excited to find the website for the Sjogren’s Syndrome Foundation (sjogrens.org) with pages and pages of resources.

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What interested me the most was the support group page with listings by state, so I immediately clicked on Mississippi to see when the meetings were. Unfortunately, there were no meetings listed, so if there are any, I don’t know where and when they are, if any.

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My resolution to this was to seek our support groups on Facebook, and I did find some fellow group members online who are also in Mississippi. However, I still feel the need to raise awareness about Sjogren’s syndrome in Mississippi because it seems like so few people in my home state have ever heard of it. To start, I created a Facebook group for Mississippians with Sjogren’s syndrome. As of this writing, there are eight of us, but I believe that it will grow over time.

I also reached out to the SSF to let them know about my group, and representative said that she will give me some pointers about starting an SSF support group. That would rock!

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I’m not expecting everything to come together overnight, but my hope is that if I keep at it, I won’t get so many looks of confusion when I say “Sjogren’s syndrome.”

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