I wasn't quite sure where on the board to put this post but I figured this was as good a place as any.
Mainly, I just needed to vent so you can muddle through this post or skip it if, like I kind of feel right now, you are too emotionally labile and exhausted to deal with another person's angst, frustration, and depression.
There was a mix up today at my physical therapists office on my appointment. These things sometimes happen so it wasn't like an end of the world issue or anything. But it completely broke me.
It's all I can do to bathe, brush my teeth and get dressed. The diabetes complications make my blood pressure drop in the bath or shower so it is all I can do to clean myself without fainting. The gastroparesis makes me chronically nauseated and the recent increase in my Plaquenil dosage has not helped that at all. I am managing between 500 and 800 calories a day. No raw foods. No fruit. No veggies. No fiber.
To then drive to PT twice a week while they basically rip through the adhesions in my frozen shoulder and then drive back is more than I can take. I drove up there this morning with the air blasting at 58 to try and keep from either throwing up or passing out.
So today was a wasted trip that pretty much took all my "spoons".
I have a spinner on the Jeep (to help me steer with one arm) but the car is still a behemoth. I'm sort of shopping for something smaller. My daily driver used to be a Viper RT10. It's been sitting in my garage since Spring. I can't drive it. I will likely never drive it again with the top off because of the sun.
I cancelled the rest of my PT for the month and they agreed it might be better to wait until this flare has passed to try anything.
I am in so much pain. I took my last morphine pill (left over from intense neuropathy pain last year), half a phenergan (for the gastroparesis) and a low dose valium (for the CNS itching and muscle cramping).
And I am upright and typing. All of that barely took the edge off. But I can't stop crying.
I feel like every day now is a fight. Everything from dressing myself to scheduling appointments is a battle. The looming holidays are a wall to scale. My husband is going to yet another wedding this weekend I cannot attend.
I have help (both paid and unpaid.) I have an AMAZING husband who is devoted to me. I have great doctors, one of whom is so frustrated because he wants to help me so badly and he feels powerless.
But between the diabetes complications and the lupus it seems like one step forward and two steps back. The neuropathy had gotten so much better before the lupus diagnosis. I was lifting weights, walking (at grade) on a treadmill 3 days a week, wearing high heels again, dancing with my husband, doing barre exercises.
In the space of 2 weeks, my left shoulder was frozen, the neuropathy was horribly back and I needed a forearm crutch to walk, the gastroparesis had me throwing up everything, I had bursitis in both hips, rashes, tmj, etc. I finally had the lupus and sjogren's diagnosis I had been fighting for.
My life is almost inalterably changed. I am in the middle of a refit on an incredibly expensive yacht (my husband is a licensed captain and sun worshipper) in preparation for retirement on Hilton Head Island. We're now trying to figure out HOW to retire and keep me (I'm only 43 - he's 59) insured. I guess I won't spend much time on the fly bridge.
I'm curled up in bed watching tv by 5 in the afternoon - and my Harry Potter movie (to call me an insane fan would likely be an understatement) opens at midnight on Thursday. I want to see it with my husband but he leaves for the wedding I cannot attend on Friday.
<sigh> I am so tired. I feel like I'm 80. I used to be a dancer. I used to be an erotic art model. I used to be a political activist. I used to be a writer. I feel like my life is now characterized by what I used to be and I haven't yet reached a definition of what I am NOW because the meds haven't started working yet.
I don't want every day to feel like I'm marching into the breach. I don't want to be in so much pain that my choices are suffering or doping up to the point of mental impairment (you may think I sound unimpaired but I keep having to fix typos and look up words). I don't want my days to consist of compromises. I don't want to be a source of compromise to my husband.
I want my life back. I feel like I am in mourning. But I also feel like I have no right to feel that way.
When I read about some of you who are single parents or can't afford your meds my heart just breaks for all of you. I KNOW how lucky I am. I literally pinch myself every day for having found this incredible man who has given me a lifestyle I could have only dreamed of and love and support more solid than anything I have ever known.
Today I am just so sad about all of this. I feel like I just can't do it anymore - that I don't think I have what it takes. I'm sure this feeling will pass. Or, at least, I hope it will. But today I feel like a burden to everyone around me.
What a G-d awful feeling.
Depression is something with which we all suffer from time to time, and this is a good place to come when life feels unbearable. I am so sorry for your suffering, but glad you could vent, as I do, in this forum. I don't know about you, but when I'm in the midst of a bad flare, there's only so much I talk about with even my best friends, for fear of wearing them out. They try to understand, but I know they don't. So I have started coming here. Like you, I am saddened to read posts from young single mothers struggling to financially support their families, raise kids, and fight the disease all at the same time. I don't know how they do it. Reading about each others' stories helps me get out of myself and my problems and reach out to other people.
The holidays can be such a struggle. Seeing life go on all around you while you don't have the energy to go even to the movies can be difficult. Hopefully the increased dose of plaquenil will help once it kicks in. It has been a lifesaver for me, but it took time to bring relief.
I've only been coming to this forum for a couple of weeks, and it has become a lifeline for me. I need to vent somewhere, and this is a safe place for me. I feel compassion and understanding here. I hope it helps you as well.
Hang in there. We care. Hugs
I cancelled all my PT appointments which has taken some of the load off.
I'm shopping for a smaller (and better gas mileage!) car that I can get me and my forearm crutch in and out of but so far I'm just looking online. I don't quite have the energy for a car dealer right now.
I have a lady who comes to the house twice a week to do PT for my neuropathy. We haven't been able to do much since the lupus flare and she doesn't specialize in frozen shoulder or anything. But she's doing some research and working on range of motion stuff with me.
The lupus is tiring enough without being down an arm. It's like everything I do takes twice as much effort. Everything on TV makes me cry. It reminds me of when I had just had my son and couldn't watch a show where anything bad happened to a child without bawling!
I slept all afternoon yesterday. I wish I could do that again today but I have stuff to do! Alas!
I am trying very hard to maintain my almost legendary sense of humor. Told my doc I was planning a trip to Africa because for all the crap that was wrong with me the one thing I would NOT get was malaria! I DARE those mosquitos! HA!
Many many hugs dear Ariel!
This is the place you can vent and we all can offer you support and as much comfort as we can. We all understand where you're at, we all understand the frustration, the depression, the days "marching into the breach." This board is a lifesaver - it can help you find a bit of strength and comfort.
It is so difficult to feel that your future will not be the one you'd envisioned. You can still boat - just dress sensibly. Visit Coolibar, Sun Grubbies, Sun Precautions and similar websites - sun safe clothing and hats. You'll still need to be sensible about sunscreen and reflected light, but you can enjoy.
Lean on us here, and add a "talking cure" to your regimine - find an EAP counselor, a social worker, or even a minister/priest/Imam/rabbi who you can talk to. Someone who can help you find new ways to enjoy your pace now. I had to learn to accept a weedy garden, and now love the loosely messy look most of the summer, rather than grab a hoe and hack away. Little things like that - "slow down and smell the roses" - as the old saying goes.
It isn't an overnight thing. It isn't a place you reach and stay - but it is a place where you can eventually find a comfort in your new abilities and new pace.
So many hugs dear!