I go something like this.....
Top of head, dull pain. Underneath the skull. Feels full, swollen, inflamed like. Tylenol doesn't even make a pause in the blood pulsating through my skull.
Difficulty remembering. Times I forget if I was going upstairs or downstairs and what I was retrieving.
Once I got into the car and didn't remember if I was getting in or getting out.
Times while driving I forget where I am, like I am on the wrong street and never drove it before…but when I wake from that skipped in thought moment, usually it is the road on the way home.
I know, I know but I can’t find the words in my memory to say what I want..er, er..ah, ya know, that thing or to find things, that I swear was just there.
Or in my kitchen when I put dishes away, another hiccup in my memory, gee where does this go? I go to that cabinet, and to this one…nope, nope in a minute..oh, this is where she goes.
When I wake up. I feel like someone pushed me into wet cement and while I slept it set. Sleeping in the distorted position all night, without a turn. I feel hardened, stiff. I can feel my spine from the base of my skull to the end bone of my tail, like in the movie Predator. Like a tadpole tangling from his grip.
Nausea is prevalent. Toilets are for butts and not my face.
Stress just smothers any thought. Extreme stress in the home. The load is too heavy for one, let alone the one with Lupus. My husband is always in the sky, city to city, or in a taxi, building to building.
New place. New home. No support in the home. No support near. No friends. No family. My husband and I are on one coast while my friends and family are on the other.
My joints are stiff like a Barbie dolls’ rubber legs. You bend them but they never make that 90 degree angle. Aching like the pain of a tooth that had mistakenly chewed on the Juicy Fruit Gum foil wrapper.
Sometimes I can see the inflaming tissue in my thoughts, like the thin membrane on a turkey’s rib that has been cooked. I feel every bone, every joint from my jaw to my big toe.
Muscles ache as though someone is pushing on an already bruised spot. Location, at the connection to the bone, closer to the joint. Sometimes in the middle of the muscle, or I should say, the muscle that once was. Connective tissue, tendons? It is as though not enough oxygen is flowing though my blood to feed my muscles. Stretching temporarily relieves the pain but also increases joint pain. Between the two..Muscles..joints..humm..which one do I want to hurt less today?
My chest burns inside. I feel the pain all the way to my spine as though I was only one inch thick. Or is it my spine that makes my chest ache? GERD, which I was diagnose with or another herniated disk, as I had three, three spine surgeries? Right arm doesn’t have full range of motion without pain. Bicep and forearm affected. Spondylosis progressing? Or another symptom of Lou-Pus?
Eyes, with each blink feels like sand on cement with each high heel step. More red lines than that of the highway map in New Jersey. Feels as though my eyes are being pushed out from behind. The sockets ache with each darting look. I am wearing sunglasses as I type this as the LCD screen is burning my eyes. Sjogrens Syndrome. Show Grin, huh? Show him what? That I am drying from the inside out?
My face is like two land masses of rugged red terrain connected by a bridge. More like a pimply rash that needs to be dusted with Johnson and Johnson's butt powder and covered in a baby's diaper.
Energy? Isn’t that a name of a edible bar as I know no other, as I don’t think we had met. If, energy is what I spend rolling from one side to the other while in bed, I guess I met him for a brief moment in the night, he is the one then that gave me that small momentum to flip in bed.
This episode has been three months, it is getting old and as each day passes I am too a day older. Closer to the dirt than I am to a dance floor.
This is my story. I am 46. I haven’t been well since 2000. Two lumbar and one cervical spine surgery. Was waiting to recover from this last surgery 10 months ago, in hopes the end of back pain would be near. Instead…since 2000, while recoverying I was plagued with hives the size of dinner plates for 30 day stretches, rashes from ears to ankles. Laundry soap, dander, laxtex I wondered? Dizzy, blank stares, two by two, each joint would flare. Memory stutters, that I bought a NintendoDS to play BrainAge. I wondered for two years..is it menopause? No more eggs in this basket. Arthritis? New house making me ill? Allergic to cosmetics? Tried everyones’ from Lancome to Estee’ Lauder to K-mart Cover Girl.
I was stuck in the cement bed. I cried, I moaned and made my way to the doctors, filled vials of color me red and I drained the yellow me. Positive was bad, negative was good. Bad was good and good was bad, left me in a spin. ANA elevated, protein and bacteria was found in the cup. I was passed on to a Rheumatologist. More tests were done. Did I pass or fail when he uttered, Mrs. “Oluwa”, you have Lupus?
Does just being alive matter? I lost my creativity. Will I ever get better? This is the most I've done today, writing this..this ..this thing called my life.
Last edited by Oluwa; 07-23-2009 at 08:17 AM.
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To answer you last question...yes life does matter. Why? Because you matter! We are all creations of God and I do not think that he created anything that does not matter!
I am so sorry that you are suffering so greatly and with such a myriad of symptoms. I know that many of us can identify with so many of your symptoms. The memory problems (I like to refer to them as 'brain farts'), the debilitating fatigue, the constant pain and inflammation, the horrific headaches, the swollen face; oh yes - too many of us have been there also.
I am sending you a cyber hug because I can feel, through your words, that you need one. I want you to know that you are not alone, please know that you can always come to us and someone will always be here to help you. I hope that you are able to find some relief from your symptoms or, at the very least, some understanding and compassion!
I wish you the very best
Peace and Blessings
I am so sorry that you are having such a tough time! What a myriad of symptoms you are experiencing!! I hope you know that you definitely are not alone. I know how hard it is to pressforward sometimes. Manytimes I'd rather go back to bed and hide under the sheets than face the day. I know it is so much easier said than done, but do try to find some good in everyday, it will do wonders for your spirits & outlook on things. I have many of the same symptoms that you do, and I truly feel for you....its rough I know! You are in my thoughts and prayers.
Thank you Saysusie and Ruth1908 for your words that are filled with compassion and encouragement!
Usually I am a strong one, but recently I've hit a really rough patch. Too many holes to in my path that I was bound to fall into one. In the dark, I cried alone. Perhaps, because my husband is out of town it gets magnified. This time alone it went from ant size to a tarantula. I wasn't lonesome, I became lonely. Felt all alone.
I know there is happy, I usually find it but yesterday I looked everywhere. In a snack, in a movie, in the warmth from my kitty. It wasn't here, it wasn't there. The wind was breezing through our screened porch. The sheer outdoor curtains sailed in the wind. I love the wind as it lifts my hair, listening to the trees' leaves shuttering in the air. Surely, this will cure the blues. I walked ever so lightly on my aching heels and sat myself down on the overstuff santee. It felt wonderful, but soon my body said it had enough.
I wanted more and when I couldn't I took to my bed and had pity for myself. Said this just can't be life....
Went to my space and sat at the PC, looking for help, any. Miracle foods, vitamins, homeopathy, someone...searched and surf and I found you.
This morning I took two pain stompers, coupled with Claritin to stop any allergic reactions.
I've made a list of anti-inflammatory foods, and those foods to avoid. I've scheduled a painter to color my space in a warm color as now it is a cool. Too bright. Feels like a neon light. I want something soft like a taupe with a splash of orange. I am getting geared to get myself out of this hole, gaining control over the situation.
Surely I will flounder about, as I tangle from this rope to get myself out. I will come here often, to encourage others like you have done for me and no doubt I will write more lines of woe is me. Sounds strange, but it is nice to meet someone like me. Who is not Lupus free.
I am sorry that you two have Lupus too and to all who come to visit this place in space, wehavelupus.com.
Thank you again. Squeeze, tight hugs....Oluwa
I've been there, recently. I'm coming out of the dark myself but it isn't easy. I know the absence of a husband makes it that much harder to carry alone. The last hole was by far the darkest depths I've reached, so I'm trying anti-depressants. Even though they do nothing for the pain, the pain doesn't make me feel like I'm worthless and caught in a black hole forever.
I will be praying for you & all of us. I'll be on and off today if you need me I will try to respond quickly...
Thank you, AB for including me, us in your prayers.
Still scaling the hole walls? Anti-depressants working, yet? How are you this day? Being depressed causes physical pain, so maybe when we can get our spirit in balance the aches and pains will lessen.
I use to be full of life, loved to cook for guests, tend the flower garden, swim, dance, paint, sew, read, social gatherings, travel, photography...but the downer for me, the words use to...
I've had to change up so many times, my lifestyle and with that goes friends. My travel is to the store, my cooking is slap it on the grill and my social gatherings is talking to my neighbors over the fence.
I'm just not ready to alter me again, but I will reluctantly accept the change and concentrate soley on halting this, this, this thing. Creating a regime of eats and activity and hopefully I can make it surrender, even if it is just for awhile.
My husband lands tonight, I told him earlier today I don't think he realizes what a sick girl I am and I need help. That is my fault because I always tried to keep a smile, toss a few pain pills back and pretend all is well. After our conversation I felt his hand, grabbing mine, tugging me, helping me out of the hole.
Are you on any special diet?
Do you have the facial rash? What do you use to keep it calm?
Any tips, tricks to make your body feel better?
I am just south of you, the other Carolina.
I am still scaling the walls. It is starting to work slowly...at least the opaque veil is becoming more translucent. Today I feel tired. My pain is on the low end. I went to work earlier and came home because I was feeling myself getting sucked into the exhaustion, but I am also learning that just going in for an hour a day makes me feel like I've done something compared to the last few weeks that I've been bedridden.
I do not have the butterfly rash, what I do have is these horrible breakouts on either side of my chin. I've never had this before. They disgust me and they are all I see when I look in the mirror. I have tried everything short of going back to the dermatologist which will be one more doctor and dime, but if they can help me feel attractive again I think it might be worth it.
My husband is amazing, but he is learning how to deal with this the same as me. I wonder sometimes if he would have married me if he'd known I was going to be so broken...those are dark days indeed. More often I wonder if I would have married him if I had known he was going to have to take care of me physically so early in our marriage. He keeps me from falling off the edge and I can't imagine going through this alone, but it makes me sad that I'm not able to be more active. There are many things we have given up. We don't go to concerts or the movies. We rarely travel anywhere unless we will be there long enough for me to recover for the trip which leaves us little time to enjoy it. Most of all we don't spend nearly as much time at the beach. We both love the ocean, but I can't really do the sun anymore. Like I said it is hard, but we are learning together.
I looked for a support group in my area and they meet once a month in the middle of the day. I only recently (last week?) found this place myself so I'm very greatful for your post.
Sorry, you asked about tips...
Rest when you have to, move when you can. Sometimes, for me, this is as little as my husband driving me to get gas with him. I don't have to get out of the car, but I do get out of the house.
DON'T make lists. This has been really important for me. I write something down when I think of doing it ONLY if I know I can do it now. I write it down, because I'll go to the bathroom and forget what I was working on, but I've found that lists just make me feel like I'm not doing enough, which leads to worthlessness all over again.
Ask for help. It is hard to be dependent. I've always been very strong and like you, I'd pop a pain pill and pretend I was okay, but I wasn't fooling anyone. My husband always knew but didn't want to push me into admitting it if that would make me feel worse. This is a partnership though and even if I can only bring my absolute love for him to the relationship I have to tell him what I'm feeling. This has gone a long way to helping me not feel worthless, because he says "Rest!" "Sit down, I'm happy to get it for you," etc and it is like we have given me permission to feel like crap with no guilt. I know I shouldn't need that, but aparently I do.
My life is not at all what I thought it would be, but this is my life and it is valuable (as is yours) I know I will continue to have good days and bad months, but I just try to enjoy the good ones to the fullest extent possible.
AB, Oh, I feel the same about my marriage and use the word broken. Would we be married if we knew? We've been married for almost five years.
I feel guilty for "lazin' about", knowing he works hard so that is why I kept most of it to myself. Making myself feel somewhat less important. Maybe I didn't realize how ill I really am too . Now it is all out, all my ouches and grouches. I don't have to carry the load anymore, alone..I dumped it all out. He said if he can't be here, and traveling about, he will hire some outside help...i.e. cleaning service and outsource the laundry to a cleaners. It is funny, I didn't want him to feel bad, but in the end by not saying it long ago that I need help I did make him feel bad after all. Now we both feel guilty and in time it will be gone. He promised he will cut his travel when he gets back from his trip to India next month.
I do find if I did more than shuffle about that day, like planting a couple of trees. I am out for at least two to three days. Feeling as though I just did my first triathlon. Not that I ever did one, but I can only imagine the exhaustion.
That is great, I am happy to know you have found a support group in your area. I've searched the yellow pages and the Internet but to no avail. MUSC lists there are no support groups in the Lupus Foundation of America-South Carolina Chapter. They seem to have research groups, maybe I should check that out. But do I want to be a trial?
Lists, I don't do them like you. I have reminders of all the things I wanted to do near my desk, in my drawer, on my shelf, at my table. Pillows to be made, quilts to be finished, photos to be frame, drapes to purchase, walls to paint, canvas waiting for colors... We had our house built and move in almost a year ago. I am a self-proclaimed artist but now I feel like a blank slate board, unable to envision, Maybe it is the meds and it will pass.
For your chin, have you tried a product by Olay, Definity. A mild skin definer and light scrub? When my face isn't in a flaming flare this makes it look smooth and feels silky soft, but I still look like I have a mild sunburn. But when it is flaming, I can't find anything to make it feel stop feeling like a Halloween mask is glued to my skin. Tight and dry. My face does have good days, leaving me to feel attractive. Give it a try.
Does the palms of your hands and the heels of your feet ever ache? Mine does..
Thank you for chatting with me....
Last edited by Oluwa; 09-20-2010 at 01:13 AM.
I really appreciate your chatting with me as well! We have so much in common. I also am a self proclaimed artist. I write, or at least I used to. I've had a few things published and now I have a hard time stringing a single sentence together. I have more art supplies than I know what to do with all with a layer of dust because I just can't will myself to paint or draw.
This is our first marriage as well, my husband is 40 (I'm 30). We've been together for 7 married almost 8. We moved into our house (which was built for us) three years ago and the walls are the same color as when we moved in. Our upstairs is unfinished. We have unfinished bookshelves in our garage. All of the things I used to love to do, I don't have the energy or even spirit to do them. I also have quilt to be finished from years ago, my wedding photos haven't even been ordered (thoug they are digital so we have more time...because three years isn't enough) I don't have blinds in my Kitchen windows, because they have to be special ordered and fitted and I never know how I'm going to look or feel from one day to the next and blind makers don't come just beause you are having a "good" day.
I know when I read your initial post I thought, "This woman is close to giving up," but I'm so glad I wrote you because honestly, I believe we need to freely share those thoughts that so many of us have. I know it is thought of as taboo, but I think we all feel what you feel. At least I do.
Do you know the band Phish? My brother used to listen to them and after he died I got his collection. There is one song (Rift) that comes to mind all the time and especially when I read your post. Here are the beginning lyrics:
Last night, in the moments my thoughts were adrift
And coasting a terrace, approaching a rift
Through which I could spy several glimpses beneath
Of the darkness the light from above could not reach
I spied wings of reason, herself taking flight
And upon yonder precipice saw her alight
And glared back at me one last look of dismay
As if she were the last one she thought I'd betray
So much better I said to myself
And drawing quite close to the top of the shelf
I struggled with destiny upon the ledge
And gasped when defeated he slipped off the edge
And silence contagious in moments like these
Consumed me and strengthened my will to appease
The passion that sparked me one terrible night
And shocked and persuaded my soul to ignite
Anyway, I'm home today...to much hip pain to make it to the bathroom, much less my office. I'll try the Olay product and yes the souls and palms of my feet ache like I've been running marathons while simultaneously raking all of the yards in north carolina.