A New Set of Bullies

Happy New Year, dear friends.  As many of you know, 2016 was a roller coaster ride for me, both physically and emotionally, because of my health.  I puked nearly every day and absolutely every week, no less than twice a week, with the exception of a very few times when I found intermittent relief with one gimmicky pill or another.

I developed what I thought were more food sensitivities, as I had increased swelling and pain after ingesting certain ingredients.  For nearly all of 2016, I almost exclusively ate grilled cheese sandwiches because that was about all I could hold down.  (I used to say the only thing better than cheese is more cheese.  Do you know how sick I am of cheese now?)  And I got sicker.

I had my intensely infected gallbladder removed which provided temporary relief, only to find out that the surgeon left an extremely calcified and diseased gallstone in me which made me sicker than ever for nearly a month until it worked itself out.    And I got sicker.

I literally ate acid before each meal to help it digest before I vomited it.  And I got sicker.

My energy was ebbing to the point that I barely was able to stay awake for work hours only.  I was losing big clumps of hair everywhere.  Every. Single. Day.  My vision was blurred, and I was dizzy most of the time.  And I got sicker.

I put up with asshole “friends, acquaintances, and family” calling me a hypochondriac, telling me I didn’t “look sick,” doubting that I vomited as often as I claimed because I hadn’t lost much weight, telling me I needed to see a psychiatrist, and advising me to seek mental help.  I became the butt of their jokes, either by claiming, “Oh, we can’t serve that food; we might as well serve cardboard or Rachel might throw it up,” or “Maybe instead of visiting the toilet, you should visit the psychiatrist’s couch.”  I tried to force a smile.  I tried to shrug it off and not be a bad sport.

But I was boiling inside!

Can you imagine how stressful it is to not know what’s wrong with you, to want to eat like normal people, and to select a meal not based on price, availability, or taste, but rather solely on how it might taste when I throw it up later? The simple question, “What’s for dinner?” literally reduced me to tears on more than one occasion.

I feel that most of these so-called “friends” were no less bullies than the jerks on the playground when I was a kid.  I know they thought they were funny or cute, or they didn’t know what to say, or they were the type that needed to “fix something” and because they didn’t know how to “fix me” they had to just say something.  But the sharpness of their words stung just the same.

After over 6 months of tests with no real answers, I was disgusted by doctors, and just fed up with life in general.  And then my hair started falling out even more.  Since I’d already been diagnosed as anemic, I made an appointment at an entirely different clinic, hoping I could just get an iron infusion and not have to wait for the pills to kick in.  As I mentioned in my last post in October, this doctor was awesome!  He’s the epitome of what a doctor should be.  I kept the focus of my issues just on the low iron anemia because I didn’t want to go through the same intense GI tests that I’d already had to no avail.

I accepted that hugging the toilet was a way of life, and I just wanted my energy and hair back.

He kept asking different questions, and I kept my answers vague because I only went there for the infusion prescription.  I got annoyed when he asked if I was “regular” (because that’s none of his business, right?), so I rolled my eyes and dismissed the question with, “No, but I’ve been that way for years because I feel swollen inside after I eat most foods.  It’s just how I react with food sensitivities…”

The word “swollen” caught him, and he started writing so fast, his pen was a blur.  He went from ordering a couple of tests to more like fifteen.  When a couple of those results came back irregular, he repeated them then sent me to a specialist when they came back irregular a second time.

So, apparently, I’ve been wrong for years.  The swelling I get after certain foods is not a sensitivity or allergy.  The pain and swelling I get after eating or upon waking the day after I eat a “no-no ingredient” is also not from a sensitivity or allergy.  My dizziness and exhaustion is not necessarily from having low to no nutritional value to my diet.  And my chronic vomiting is not from a sensitivity or allergy.

I was diagnosed with lupus.

I’ve tried to avoid telling people so far because I wasn’t ready to have to deal with the stupid comments from the same jerks that made me the butt of their jokes.  But there were certain people I had to inform, and, yes, it’s left me just as angry and pissed off as before!

Lupus kills!

It can cause excruciating pain in any part of your body.  It can destroy your organs, including robbing you of your eyesight, your hearing, and even your brain!  (I now wonder if that’s why my gallbladder was so filled with infection.)  You often have to avoid the sun with lupus because sunlight can cause a flare.  Stress can cause a flare.  Food can cause a flare.  Colds or infections can cause a flare.  Exhaustion or an injury can cause a flare.

If you’re unaware, lupus is an overactive immune system which causes your immune system to attack everything, even healthy cells and tissues, organs, etc., within your own body.  So just being around someone with a simple head cold means I can get their cold, take 3 or 4 times as long to heal, and possibly even get a worse infection from it, and then of course, deal with a flare.

I always thought I had a poor immune system.  I never realized I actually had an overactive immune system (which results in the same thing: slow healing time, easily infected, etc.).  So everything I’ve done to try to boost my immune system has been counter-productive, actually causing my immune system to work even harder and fight against my own body even more.  {I’ve already dealt with this since my diagnosis, having had bronchitis since Thanksgiving weekend, and I’m just now starting to get over it!}

During a flare, you can expect, pain, inflammation, swelling, vomiting, migraines, hair loss, facial rashes, fatigue, dizziness, memory loss, cognitive skill loss, and organ damage.

It’s scary as hell!

Yes, it is true that between 80% to 90% of people diagnosed with lupus can have a normal lifespan with the appropriate medication and monitoring, and I pray to God that I’m one of them.  But so far, the medicine I’m taking also causes hair loss, muscle loss, dizziness, water retention, brain fog, and it can cause a dreadful sounding condition called “moon face” where your face grows and flattens out from fluid (Thank God I haven’t had that yet – and thankfully it is reversible if you stop taking the medicine).  But I have had increased loss of hair, loss of muscle, a lot of forgetfulness, inability to concentrate, and worse yet, the loss of speech!  It is so frightening to be in the middle of a conversation and know what you want to say, yet not be able to make the words leave your lips!  (Oh, and by the way, I’m still puking regularly, but the doctor says once one of these medicines kicks in some six months from when I started taking it, that should level out.)

The Impact of Lupus of the BodyI now feel stupid and ugly!

I’m angry because I’ve already dealt with a world of shit, and despite that, I’ve still tried my best to refrain from complaining, but I don’t deserve this (not that anyone does!).  I’m pissed because the idiot doctors I saw since 2015 never once sent me for any of these tests so I could get a handle on this sooner.  And I’m scared to death!  Because while there are plenty of people with a long lifespan, there are also plenty of people who die from this awful disease long before they should, and their only solace from it is that they’re finally out of their excruciating pain.

I know I probably sound like a wimpy whiner.  I know many of you probably have lupus and are living just fine.  And I’m sure I’ll “settle in” to my diagnosis soon enough.  I just wish I had  a better “support system” in place to help me deal with the scariness of all the unanswered questions I still have.

That being said, do you know how many of the same assholes who played me off as their joke have had the nerve to tell me, “Well, at least you finally got a diagnosis,” or, “Oh,  my aunt died of that,” or, “Oh, that’s nothing.  I knew someone once with that, and she lived a normal life.”  But the absolute worst has been, “What’s lupus? [Then I explain as above…] Oh, I know what you mean!  Once, I took a medicine that made me lose my hair for almost six weeks, and it drove me crazy…”

Reactions such as this make me want to scream! 

So while these friends of mine are probably well-intentioned, their comments throughout my journey have hurt me no less than when my arch nemesis in grade school used to pick at me relentlessly.

I’m stepping down from my soap box now.  I appreciate your allowing me to vent and kick and scream and cry on your shoulder today.  That being said, now that I’ve gotten it all out, I hope to be able to, in true Rachel fashion, pick myself up, dust myself off, and get on with my life and the act of living with this diagnosis only being a little hiccup.  I’ll definitely appreciate each and every encounter much more as I walk my journey.  When I next see my doctor (in February), I’ll get tested to see if it’s one of the medications or the disease itself that’s causing my recent brain problems, so I’d appreciate your prayers and good vibes until that time.  And I’ll keep you posted as I rearrange my bucket list and hope to have some wonderful adventures.

Let’s talk:  Have you ever received scary news from the doctor?  How did you cope?  How would you deal with people who joke at your expense to the point of being cruel or who blow off your ordeal?

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40 thoughts on “A New Set of Bullies

  1. Oh goodness, Rachel! I’m sorry to hear that but I’m sure you’ll get to a point where this all becomes manageable. Fibromyalgia was a struggle for me since it’s difficult to diagnose so I understand those feelings of people thinking you’re crazy…but my experience seems to pale in comparison.

  2. I’ll simply say that I’m so glad to see you strong enough to type to us, my dear Rachel. OK, I must go on some, me being me and you being you. Having a diagnosis is good. Now your doctor is fighting the right illness! You and your medications are on the same team!! And … my baby sister has been fighting lupus for a decade, getting through the flares, staying out of the sun, and living with it. You will find your equilibrium. Love you. ❤

  3. i am so sorry that you have had to endure all of this, rachel. not only the physical, but the emotional component. i have a very close friend who was finally diagnosed with lupus 2 months ago, after 6 months of doctors, tests, etc. now that one kind and intelligent doctor stopped the madness and figured it out, she is managing it and having many more good days than bad. i hope the same for you –

  4. I believe you are smart, worthy and beautiful inside and out, Rachel. Time will tell if treatments work or if a natural homeopathic treatment works better. I think knowing you have a diagnosis is very validating. Also, lose a few of those so-called friends! I did this when I turned 50 and it felt like a big stone was taken off of me! What a relief! The ones who think you don’t need sympathy or comfort and somehow always think their problems are worse are “toxic.” Take it easy and hope things improve slowly but surely. ❤

  5. I’m so sorry to hear you’ve gone through all this. Rant and vent away, Rachel! You’re entitled. Even though you said you’re annoyed by people who say at least you have a diagnosis now, it’s true that now your disease can be treated, and hopefully you’ll see some improvement soon. My younger daughter has lupus–nowhere near as severe as your case–but it did take a year or more for it to be diagnosed. Apparently there is such a thing as drug-induced lupus (from birth control or antibiotics), which is what her doctor thought it might be at first. Does anyone else in your family have lupus? My daughter was surprised that no one did, but then my mother-in-law at age 70 something was diagnosed with it. Have you looked into lupus support groups? Perhaps they might help? Sending you another huge hug. I hope you are feeling better soon!

    • I’ve never heard of drug-induced lupus! So far, I’m the only one I know of in my family, so who knows? How long ago was your daughter diagnosed? My doc says so far, I’ve been in (at least) a 5-month long flare, so as soon as I get through it, she says I should feel so much better. I’m looking forward to that. As far as support groups, I’ve just been introduced to some friends of friends on Facebook who have been helpful to talk to and learn from. Thanks for the love! ❤

      • Hi Rachel. It’s good to hear from you! Yes, drug-induced lupus is a real thing. My daughter first had symptoms when she a senior in high school, and that’s when the rheumatologist first thought it might be drug-induced lupus. We did a lupus walk/run last Fall in Philadelphia. You might find information and support groups through the National Lupus Foundation. Hugs and good luck!

  6. After I had the heart attack and surgery, the doctor said that my heart was damaged and wouldn’t get any better. He said he might have to go back in. I told him I wouldn’t authorize any more surgeries.
    I do pray for your healing, so you’re good to go.
    I’d be looking around for some new friends.
    I know how you feel with the meds. About the time you start getting used to them, they change the meds or up the dosage, and you have to go through getting used to them again. Being light headed is now my new normal. And going blind at high altitudes (I live at 6,000 ft) is my new normal, too.
    You hang tough. I’m sending good thoughts your way. ❤

  7. Well, Kindred, here we are again. I read each of these words and re-lived most of them, albeit with different symptoms and diagnosis in the end. I know the stabbing at your soul kind of pain when you are floundering alone out there looking for help, and relief, just for someone to ‘hear’ you. I know how it feels to learn who is your friend or ally in the true sense or not. I know how it feels to be told your worst experiences are only in your head. I can’t stand that anyone has to get through this cruel and vicious route to find critical answers to their own health needs. It will always drive me a little crazy that people, even or especially doctors, will dismiss anything if they can’t find the easy answer in short order. I am sorry you are diagnosed with Lupus. I am relieved that you know what you are dealing with, finally. I will always hold the highest hopes that you will now live in much greater ease because the treatments and lifestyle attentions will benefit you more than less. I wish I could hug you, just to be able to fully convey that I understand. I understand every moment of this journey for you. I am happy you are back – for whatever that will look like. Always, the hugest hugs for you. ❤

  8. Oh Rachel how awful! I’m so angry on your behalf, particularly that your so-called friends are so unsympathetic and mocking. Two of my (former – I myself have left) work colleagues have lupus and I know how unpleasant it can be. I’m sure stress is a big factor in this. Are you still working? If you were in England, you would be entitled to sickness benefit. My prayers are – very much – with you.

  9. Oh sweetie! My heart is heavy for you and all you’ve been going through. I’ve been thinking about you a lot. I’m relieved a doctor finally figured it out and made an accurate diagnosis. You’ve been through far too much and your perseverence is admirable. I can relate to your issue with people saying you “look fine.” I have fibromyalgia and when I get sick with anything, even the common cold, moving my fingers, much less walking, hurts like crazy. But people don’t see that. I’m with reocochran, lose some of those so-called friends that are only causing you more stress. They’re literally toxic, life is too short and you deserve better than that. Praying for you!

    • Ouch, Rhonda! I know fibromyalgia is horrific as well! Thank you so much for the prayers! (P.S., I just signed up for your newsletter and am excited to keep up with you that way, too!) Love! ❤

  10. Rachel I am glad that you discovered the source of your illness but sadden at the same time to learn that you have lupus. Definitely stay positive and believe that there will be many good days ahead. Now that you know what was wrong with you, you can move forward in managing it and getting better. I will continuously keep you in my prayers, wishing for the best. Stay away from the negative people who seem to not be taking your illness and situation seriously. Surround yourself with positive, supportive, and understanding people 🙂

  11. Well, that answered my question from the other day!
    I can only wish you continued improvement in your health. At least there does seem to be a way forward now.
    And hopefully we’ll see more of your blog posts too

  12. I am very very disgusted with your so-called friends. I like the fact you finally found a good and caring doctor. Rachel, you have been in my prayers off and on for awhile. I just don’t have a lot of time to read and comment. Blessings will follow your diagnosis. People can live with Lupus. Believe in the food choices suggested as well as trying to rest and conserve your energy over weekends. Hugs, Robin xo 💟

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