My Skeleton Hurts!

Hello again, dear friends.  When I made my Bloggyville comeback appearance last week, I tried to be upbeat and lighthearted.  It’s never easy leaving a place you love for a while then returning later only to be greeted by a lot of new faces who look right through you because you’re a stranger and not seeing some of the familiar old faces you used to love.  The same is true of taking a lengthy break from the blog as I did.

The fact is, while I often see things that either make me think they will be the subject of my next short story or the subject of my next blog post, the life I was living didn’t allow my body to go much beyond just having the thought to do such tasks.  It’s been quite a roller-coaster ride since I was diagnosed with Lupus in 2016, not to mention the couple of years before that with the host of medical problems I was experiencing and getting no answers from the numerous doctors I saw.

I thought that once I was diagnosed and finally had a name for what ailed me, things would start getting better.  That was not the case.  Keep in mind that I’m also dealing with Gastroparesis caused by my Lupus, so that means I still vomit more days than not, and I’m very limited in what I get to eat and keep.  My family has started saying, “Are you going to eat that meal or just rent it for a while?”  Gastroparesis typically occurs in people with diabetes, and what happens is the food they eat does not digest past the stomach, and since it doesn’t move along as it’s supposed to, it can cause their blood sugar to spike even hours after having eaten their last meal.  In my case, my gut gets so inflamed, the food just sits there until it hurts so bad I have to get rid of it in the only way I know how.  Which is a visit to hug the porcelain god.

I took steroids daily for more than 2 years to try to get everything under control, not to mention chemo for 4 months.  Because of all the poison I was eating in the form of “medicine,” my skin thinned to the point I can see my veins, and just scratching an itch can make me bleed or have a “hickey” that lasts for weeks.  The slightest bump into something can make me get a large, ugly, violet bruise.  All the meds made me lose even more of my already-falling-out hair along with other unpleasant side-effects.

But my body was still in such excruciating pain, I saw no quality of life.

And then my rheumatologist announced she was leaving her practice to move to another city.  Fast forward a few months until I got in to see the new rheumatologist who took her place.  The new doctor’s husband is diabetic and has Gastroparesis.  What this meant for me is that (even though this G.I. affliction was out of her scope of treatment) I finally had a doctor who actually understood at least part of what ailed me.

But worse than tossing my cookies (oh, how I wish I could really have cookies!) 5 or 6 times a week, I just hurt!  Everywhere!  I typically have a pretty high pain tolerance, but this was too much to bear.  I mean, it was like this (and this is factual… not embellished for comic relief):  My 10-pound cat would try to sit on my lap, and I’d scream in agony because it was as if my femurs were being broken in half.  I’d knock on my son’s door to call him to dinner and I’d recoil because it felt as if I’d dislocated every knuckle.  I’d roll over in my sleep and wake up crying out because it was as if my ribs were cracked.  I’d sit on a kitchen chair and grimace because it felt as if my spine and my tailbone had been fractured.  In reality, my problem was this: MY SKELETON HURT!  Every. Single. Bone.  I had no better way to describe it.

My new rheumatologist, because she understood better than most about Gastroparesis, realized that I was losing nutrients during my frequent time on my knees, and as it turned out, my Vitamin D was acutely deficient.  (Your levels are supposed to be between 30 and 100 and are optimal between 40 and 80. Mine was 9!)  And when your Vitamin D is low, you don’t absorb the calcium you also need to help keep your bones healthy and strong.  Turns out that the steroids and chemo I took are known to deplete Vitamin D, the anti-malarial I still take daily to preserve my organs is known to deplete Vitamin D, and my unwilling pastime of barfiness also depletes the Vitamin D. Additionally, I haven’t eaten any of the foods rich in Vitamin D (milk, fish, eggs) in more than a year because they make me puke.  And because of the Lupus, I can’t get out in the sun which is another source of Vitamin D.

(Side note: when I had the iron and B-12 anemia, that caused pain and total exhaustion, but that pain was nothing compared to this.)

So, I was put on a prescription level of D3…  If you take an over-the-counter supplement, you will either take 7,000 or 14,000 IU’s in a week’s time.  I was prescribed 200,000 IU’s a week for the first four months, and now take 100,000 IU’s a week for maintenance.  And I finally feel so much better!  Oh, I do still get the aches and pains from Lupus, but those are nothing compared to the deep bone pain in every bone from the low vitamin supply.

I’m also still dealing with the puking, but at least now when I lose my meal, I don’t feel as if my kneecaps are being bombarded with nun chucks as I kneel to do so.  So, half of my battle is won, and I can’t tell you what a relief it is not to live with that kind or that level of pain in literally every bone in my body.

While my experience has soured me on the current state of America’s healthcare system and the bureaucratic “rules” that go along with it (because no other doctor I saw went out of their way to even recommend a simple, inexpensive blood test that literally could have saved me from months of torture), it also woke me to the idea that there must be an inordinate number of people in third-world countries (and likely even closer to home) who don’t get enough to eat or at least quality nutrition, and they must live as I did every day – with their skeletons hurting.  And that thought hurts my heart.

Let’s chat:  Have you ever experienced a broken or fractured bone?  Have you ever experienced a severe vitamin deficiency?  Did you ever realize that a mere missing vitamin could cause such severe pain?  When you are diagnosed with something out of the ordinary, do your thoughts ever turn to how someone else in the world might be dealing with a similar condition but for a different reason?

 

#LupusAwareness #GastroparesisAwareness

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?