Everyday Is Just One of “Those” Days

a84058af94664a90a2bbb6b831322ba2Damn it! Another one of those days that comes and goes, then turns around and comes again. “Those” days are days when I’m in so flippin’ much pain, I can’t think. Pain does that, ya know. It takes away your thoughts, hopes, dreams, and agenda. It just picks them up in its greedy slimy hands and wrings it tighter screaming at your soul, “THERE, TAKE THAT!”

It’s Spring and for me that means mowing the lawn, breaking out the shovel, spade, and seedlings to sprinkle around my yard. It means looking for fun projects to do around the house (re-arranging furniture after spring cleaning), digging through photo albums for this year’s wall hanging. It means cleaning out the chicken coop and decorating it was fresh sawdust and using the poo for my soupy fertilizer. It means yoga outside on a warm sunny day, building a new mailbox post, painting the living room a new fresh color, or adding lighting to my front porch rail.

Spring means renewal of life, dormant bulbs popping out at different times to remind the planet it’s time to grow again. A big sniff near a creek and you’ll catch a whiff of Skunk Cabbage and you know all it as it should be.

Spring brings promise, hope, joy, and life. Unless, that is, if you’re in pain. I don’t mean whimpy headache pain. I mean SHUT THE FRONT DOOR pain. And believe me when I say, after weeks or months of exquisite pain, you will get PISSY. No, not pissy, I should’ve said you’ll get FUCKING PISSED ABOUT EVERYTHING AND EVERYONE! YOU JUST WANT TO SCREAM!

I want so much to start my Spring projects. It’s my favorite time of year and I can barely mow my lawn. I want to make a chicken run so my stupidly ridiculous feathered egg hiders have to stay contained. No more poo in my driveway, front porch or back door welcome mat. I have a couple of great ideas on how I can contain them; the only thing stopping me is I can’t raise a hammer. Or, if I do manage to get it over my head, I can’t hang onto it. Lupus and Degenerative Disk issues in my neck and lower back have paralyzed my right hand. The Lupus is making every joint in my body feel (and I flippin’ mean this literally) like I’ve been run over by a car and then they backed up over me again.

pDo you get what I’m saying? I can’t even hammer or screw two pieces of wood together! How crazy is THAT!!??!! When I’m severely limited on, well let’s face it, everything I need or want to do because of the pain or loss of use, I get so incredibly frustrated. Frustrated so overwhelmingly that I scream to relieve pressure in my soul.


I have been happily single for coming up on 18 yrs. I use to keep 3 or 4 ‘fuck’ buddies on standby for physical needs; however, since my ex-husband left in 1997, I just haven’t been interested in a partner. Even now, I dread the idea of not only looking for someone, but the whole courtship dance makes my skin crawl. I’m just not ready. The thing is, I can no longer handle life alone. I need help.

I don’t cook anymore. Even until a year ago, having a big fancy kitchen brought out some culinary interest, but not anymore. It’s too much work. It hurts too much to stand for long. Lifting a pot full of water  – I’m terrified I’m either gonna drop it, or I can’t lift it at all and I have to fill it glass x glass. Cleaning up is even more daunting and won’t even bother you with that narrative.

I work as much as I can to pay my meager bills. I’ve learned how to work really hard for a month, save up and then slow down the next month so I can rest to do it all again the following month. My car has a bad water pump, the Lupus is attacking my teeth so this flare is putting 3 teeth into unbelievable cold sensitivity. My back window is taped up with cardboard. I’m piss-flat broke.

How did my life get so … low? Everything was wonderful. I loved working on the ocean from March to October; then in the woods Oct to March. I have a beautiful home, great friends, and some wonderful family. I have over $20K saved up to buy land for cash and build a cob home, permaculture landscape along with livestock. I had it all – job, dreams, goals, and familial love.

Yes, I’m loved. But my dreams are gone. I don’t even want any more goals. I don’t look for land anymore…what’s the point? I can’t even lift a flippin’ hammer.

And today, one of “THOSE” days is the bursting point. I’m irritated by just about any tiny thing…the wind pissing me off. The stairs piss me off. The damn tv volume won’t turn down. The paper dropped. I JUST WANT TO SCREAM!

I hate pain. I wake to it, I bathe and dress and brush my teeth to it. I put on my clothes to it and I am just. fucking. sick. of. it.

I need help. I cannot keep it all going by myself anymore. And I don’t want to ask people for help. I’ve already leaned on every person I know and love, since acquiring Lupus & crushed nerves, that I refuse to ask. The needing help is what is going to push me over the edge, I think. Living with pain, no savings, no dreams, no time to go live life instead of just working to struggle through it, was really tough, but manageable. But the petulance and acrimony I’m starting to feel as a matter of course is just too much.

So, Cruel World, I thought I’d write it all down. I need to vent my frustration and since I do have a private little blog to rant and rave, I’m gonna just dump it all here and try to let it go.

This entry was posted in Health, Lupus, Pain. Bookmark the permalink.

4 Responses to Everyday Is Just One of “Those” Days

  1. tlohuis says:

    I totally understand your pain. I’m still waiting to get my official diagnosis, everyone of my diseases have one thing in common. When I research each disease the one word that shows up on each disease is LUPUS! I need this official diagnosis so I can get the proper treatment or I’m going to die. Point Blank! Just the truth………………………………….take care. I’ll be back to read more of your blog and I look forward to following your blog. 🙂


    • enanahwe says:

      I completely understand where you’re at right now. I went to 8 quacks (doctors specialists) who all told me either; 1. I was fine; or, 2. I was faking. When I just couldn’t take it anymore, I got a visit with a local clinic who ran a simple blood test and wallah! Lupus! I was so glad there was finally a name!

      You must realize that Lupus tests can come back negative, even if you have it. You must make sure to do them when it’s really bad…called a “flare.”

      Prednisone works great BUT…you won’t sleep (like, for days), you’ll gain weight without changing your diet, and you will become a witch (with a capital “B”) Oh, but the pain goes away in a few days.

      Keep me posted on what you’re doing. I don’t have a rheumatologist near me, so it’s just me an my family physician.

      And thank you for writing a note on my blog 🙂 Sweet.


  2. tlohuis says:

    One of my diseases is hemochromatosis, therefore I have a hematologist. The first hematologist I went to because before a surgery I was getting ready to have I had to tell the doctor that my sister has Factor V Leiden and I was told when I have my next surgery to be sure and have my doctor test me for it before the surgery. I did and I had it. One of the Lupus markers, can’t remember which one was positive, but I was told I had to wait 90 days and be re-tested because you had to have 2 come back positve. The second one was negative. I was told to go to a rheumatologist to be considered for a serologically negative lupus. I went, but no one would give me the diagnosis. I now have a new rheumatologist that I’ve seen twice so far and I’m due to see her again in June. I just found out that I have avascular necrosis of my left hip. I did my research and once again, there was that same word LUPUS. I’m hoping that this is finally going to be the time that the surgeon and the rheumatologist can put two and two together and get me diagnosed. My rheumatologist did start me on Plaquenil which does seem to help. I have so many diseases. My body is literally attacking itself and I’m getting tired. Tired of the daily fight. Tired of having no life. Maybe, I pray, that this will be it. I’m still waiting on the surgeon to call with the MRI results. It was accidentally found on a CT scan of my abdomen. I was sent to the bone and joint center. The doctor did an x-ray because in the early stages it won’t show up on an x-ray, but it did. He sent me for an MRI so he could better see the degree of damage. I had the MRI done last Friday and I’m getting very anxious waiting for the call for me to come back in to discuss my options. I couldn’t wait much longer so I called today and the nurse said the doctor is out until Friday and hopefully, he’ll be able to get the report read and give me a call. Wish me luck!
    And yes, the nurse at my rheumatologist’s office said when I’m in a bad flare to call and I can come right on in for some lab work. I probably won’t be able to see the doctor that same day, but they can maybe catch it. I’ve been in a major flare, all over body pain, hip pain, abdominal pain and distension, I get mouth sores/ulcers, whichever you prefer to call them. 2 nights ago it was like my mouth was literally on fire. They don’t hurt to start out with, but my tongue swells just enough that my tongue brushes against my teeth making them hurt really really bad. The one day that was the absolute worst was a day I had already planned to help a disabled friend of mine get her very sick dog to the vet. That’s okay, that’s what friends are for, and that won’t be my last flare. I’ve been having them for years, but you know how it works, the day of your appt. there is no flare going on. Happens every time. The next time, I will get in there. I may get my diagnosis with this hip thing. I’ve been on Prednisone a million times for bronchitis that I usually get at least twice a year and it takes me forever to get rid of it. Just got over it, in fact. I had 3 rounds of antibiotics and a medrol dose pack, of which I knew was not going to cut it. I’ve only been doing this crap for about 25 years or so, and I told the doctor that I always need Prednisone, but she didn’t want me to get the Prednisone, Prednisone. I know that the medrol dose pack is steroids, but it isn’t the same. My doctor didn’t want to prescribe it for me because I was just recently diagnosed with osteoporosis and osteoarhritis. and I understand that because that is one thing that can cause AVN. It goes on and on……………………………………..I’ll let you know what I find out. Oh, and I forgot to tell you that I have a JG Peg feeding tube that bypasses my stomach because I have gastroparesis, too. Take care and I hope to talk more with you soon. 🙂


  3. enanahwe says:

    Well. Wow. You’re a mess!

    I hate to quantify people’s illnesses as it just doesn’t pan out; however, you are a pretty sick girl. So my question to you is: How do you keep going? Where do you get your strength? How do you get thru days where moving is so damn painful?

    I have kind of reached the end of my patience with life. I wake in pain, work in pain, rest in pain, and sleep (kinda) in pain.

    What is your power?


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s