I actually hit a huge wall this month and didn’t want to write because I felt wrong was akin to complaining. Then, I read the wonderful new comments from readers of my site and decided that was absurd. Often, I’ve been the person to say things others are afraid to say out loud.
So I’ve made a new committment to writing here this summer.
I’m visiting family in texas so I’”l have to wait until tonight for a nice new real post!
Love, Sasha xoxo
For my RA things are looking up: The Enbrel is working great again. I ran down the stairs just now and was so gosh darn excited! I haven’t been able to go down the stairs like that in ages! I’ve also dropped my cane near the front door and haven’t had to use it for a few days either. I’m hoping that is a long-standing tradition.
I’m now preparing for a huge project in mid-July and hoping to bring all of my resources together to make it a success. I’m going to be working with tons of teenage girls. I’m excited about it, but this is the issue: My work is very behind because of my crappy health. There are lots of things I needed to have done already but could not. I never want to make excuses for it – but my health being so bad still has stolen many hours of my time. Now, in order to stay on track and to help the girls I am going to need to hire 2 assistants to help me with the workload. I CAN’T LET MY DISEASE WIN AND TAKE OVER MY LIFE!!! The irony of course is that my medical bills are so high (even with insurance) that I can’t afford the teammates that i need to hire in order to help the girls. I’d rather search around for the money than have the project fail. [ Please consider donating to help over 40 at-risk teenage girls through a project I am helping with]. Jax has offered to take off one week of work to help out in July. This will be a huge savings for me, but still not nearly enough to make the project go decently. I’ll have to continue thinking of ways to raise the funds.
Here’s some notes from my internal dialog: I refuse to be lazy. I refuse to let pain get in my way. I refuse to complain about it any other place than right here on this page. Naturally, this gets me into a viscous cycle of beating myself up and then that spirals into depression. Many studies have been done that show that depression makes the pain worse. You can not let yourself stay depressed!!! It is of great urgency that I keep myself out of it. This is my constant mantra to keep myself on track: I am not my diseases. They try to win my time but I refuse to let them succeed. I need to think like an Olympian in order for my project to turn out well… I need to stay focused and not let anything distract me…But unlike a sprained ankle or jock itch, my pain can literally shut my body down so I truly can’t push it too hard. I have pushed too hard many times, but only ended up 18 feet back.
So the next part is about balance: “I will push myself hard but I promise to listen for the signal to stop. I promise not to ignore it, since I know this will only make it worse. I promise to try 1 new thing this week to lessen the effects of my disease. I will not stay stagnant in the depression of it..and i promise to do activities to get out of the depression as quickly as possible. In AA (alcoholics anonymous) they have the concept, “help another person to help your own disease...the reason is because it helps take you out of your own depression/or keeps depression away if you’re not currently depressed.” This has been true for me and I highly recommend it EVEN when I feel too crap to help anyone. That’s when I focus on getting the house cleared out of stuff to give-away or small things like that. It just lifts me a bit out of my depression and usually keeps it away for awhile. I can’t allow my diseases to become the center of my universe. But then I realize that the time I used to distract myself from the pain has actually taken away the time I needed to get something accomplished. it is a conundrum! What do other people do? –Sasha xoxox
I’ve got a new theme. Let me know if you like it. Thanks! –Sasha
WANTED: BF [boyfriend] (or GF) not a Caregiver: Jax & I are working hard on breaking that “caregiver cycle”. It’s too tragic a topic for me to bother reading a book abut it right now. Maybe once I’m further through it I’ll see what books are out there. Jax & I are doing well since our last therapy session. He’s been taking more time for himself & his friends (which he never allowed himself to do before). I am so happy for him. I’ve promised myself to NEVER give him a hard time for going out with his friends (to bars, games, stripper bars, or whatever he wants). [He insists he doesn't want to go to a strip club but I've insisted it's fine if he does - In fact, I think he and I have gone together in the past]. The reality is He gave me 3 years of his life (even though I never asked or meant for him to do that).
The point is I want him to take back his own life. I want him to go out and get drunk (as long as he doesn’t drive). The more he takes back his own life – the happier WE have become. I don’t want him to be a martyr. Looking back he now sees that he should have spent more time with friends… but he couldn’t… he was too worried and was always concerned he’d have to take me to hospital. Now I am past that urgent phase. The hardest part is charting this new path instantaneously. Meaning, these past few weeks he’ll just make plans and go with no advance warning. For example, if i’m going to see a friend on Wednesday night – I’ll mention it to him a few days ahead. But since he’s not used to having plans, he’ll send a text Friday night after work that says “going out with the guys right now… see you l8r”. Then he’ll be out all night. The tough thing is that I can’t get upset because he was so gracious to me with his time when I really needed it during my hospital scares.
HOW DID I BREAK THE CAREGIVER CYCLE: I just want Jax to be happy and I don’t want him to be forced into being an around the clock caregiver. We’re starting to get a much better balance. He ends up being a caregiver about 10 minutes a day when he’s making sure I’ve taken my meds and such. Initially, when i first noticed the caregiver issue was so vast, I made a list of the things I needed to do to give him a break.
First, I became … (Read on for the list of things I’ve done to break this cycle)–>CLICK HERE Read the rest of this entry »
It’s 10:30am on Saturday morning and I just got over a 2 day pancreatic attack. For those of you with RA that don’t (thank god) have pancreatitis let me briefly explain what happens to me: First, the pain coming from my pancreas is excruciating. It is like being stabbed with a bayonet or a long sword directly through your solar plexus. Then it slides down my ribs and around my rib cage. This is usually when I crawl into a ball on the couch or in bed, or on the floor – anywhere really. I take my medicine and wait. I do have a pump but it just helps me to manage being alive. Without my pump I would be very dead. From my understanding, the way a person dies from a pancreatic attack is that the body goes into shock and starts shutting itself off. First, your blood pressure drops very low. Then you temperature goes up to about 101. Next, your system starts turning off all the switches trying to save itself from the shock it is in.
It usually takes about 3 days for me to recover from a pancreatic attack. Now, since my pump, it varies depending on how bad the attack is. I’m not clear why the attacks happen. Sometimes it’s food based, others there’s no rhyme or reason. I never drink even a drop of alcohol. I’m very strict about that. You’ll never ever see me drink a beer or a cocktail.
Since this is all about pancreatitis, I’ll start a new post that’ll be about RA to talk more about what’s happening in life. I suppose i don’t like to cross-pollinate the diseases. If you’re new to this blog and interested to read more, the chronology page might be a good place to start. –Sasha xoxo
I’ve received some great posts in the comments these past few days and would like to share 2 of them in my blog so you can find them more easily. First this one:
Sasha, when I got really sick this year with RA me and my bf stopped having sex and then it just miraculously came back. We didn’t do anything different we just started wanting it again. Perhaps, the fact that you’re worried about it and want it so much make it harder for it to happen. Perhaps just relax and realize that it’s okay to have lulls and it will come back on it’s own. She Also wrote: I have 3 autoimmunes: Vitiligo (got when I was three) and hypothyroid and rheumatoid arthritis this year. I am convinced they’re all related. But maybe that’s good. Maybe when they figure out how to fix one they’ll fix them all! -Libby
Libby makes such a good point here that I think i would be cheating myself to not try it. Good point. Perhaps what my couples therapist would advise!! This one from another reader:
Me too. I so very much appreciate the caregiving, but if I could afford it would rather pay someone else to be driver, cook, housekeeper, caretaker. We came into each others’ lives for the joy, the fun, the sex, the adventure. I’m absolutely certain that if the situation were reversed I would make maintaining the intimacy a top priority, it’s so (CLICK TO Read more about caregiver relationships and also multiple diagnosis of autoimmune diseases)…HERE –> Read the rest of this entry »
All of us have things we have to get done each day/week/month. Some of us keep to do lists, others post it notes, and some pure memory. One thing I still can’t wrap my head around is how many things I can realistically get done each day. Admittedly, this is a life long issue, but having a disease greatly reduces or alters what can logically get accomplished.
[PS. I've lost 6 lbs with new hypothyroid meds! It's the first weight I've lost since being off prednisone steroids. but still battling extreme exhaustion!]
Take my past 2 weeks as an example; I literally got zilch accomplished. I filled out 20 new health insurance grievances, fought with a doctor’s billing office, bounced 1 check by accident (please donate even $5 to help keep me going). I finally called back long overdue calls and emails, I finished a painting, ordered new embrel, and went to a friend’s birthday party sporting my new polka dotted cane.
You see, to me I got absolutely nothing done. I didn’t get a new paying project lined up because I slept half of the past 2 weeks. This must be a “type a” quality since all my non-alpha friends are always trying to get me to learn how to relax. It makes me wonder how much of my diseases are exacerbated by my own self. [This reminds me to write about "the self" in an upcoming blog as seen by Virgina Woolf. She spent a lot of time in bed also but for her mind being diseased].
My mom suggested that my problems with Jax could be preventing me from getting 100 percent better, but I have life-sentenced diseases meaning I’ll have them for life (although I’ve heard of RA going into remission. It doesn’t seem like my issues with my lovely Jax could cause my diseases to be worse. I mean, I love Jax so much and I know it’s mutual. Anytime we’ve been on the rocks we’ve always stayed together. There are no answers to this.
I need to get more realistic about what I can accomplish in my life – but I am a doer and nothing will deter me from living my dreams out even if that in the end kills me quicker… At least I lived it 110%. But admittedly, I can not seem to get started with my day for several hours. It is a huge battle for me. I can spend 4 hours just trying to start working… that seems totally absurd! Then I spend the next hour or two beating myself up for taking so long to get started…by then I am exhausted and need a nap…which I have never EVER needed before in my entire life (and I am not coping well with needing it). It seems I just beat my mind up for allowing me to take a break.
The real trick is to not let this health crisis get me down. I need to stay focused on my goals and to remember why I’m on this planet. But I do need to cut myself some slack once in a while when I’m forced by my body to stay in bed. Easier said than done!! –sasha xoxo
ps- since i have my thyroid out of whack, RA, chronic pancreatitis, and IC in remission – how in the world is this different from lupus when other systems keep failing? I just dont get it. Can someone explain it to me?!
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