Back for some old and new.

I have not written about my rheumatoid arthritis in a while because it has not improved. But I can say what it has made worse. My depression. As my physical health goes down hill my mental health follows. I’ve been called all kinds of names but in reality those same people couldn’t handle a week of my life physically, never mind the mental anguish that accompanies it. Being depressed is a lonely road. If people have not experienced it it’s very hard to understand the darkness. My old coping mechanism for depression was going outside. For a walk, fishing, birdwatching even to the store, just to distract myself a bit. It usually worked and kept the worst of it at bay. I’ve lost that remedy for the blues.

I have also learned these last seven years how important it is to have a purpose. I don’t mean a career by that. By a certain point the pain and disability makes a career difficult. A purpose is something different in my view. It’s more of a ‘I’m needed’ feeling. 

When you lose your physical abilities you really start to ponder your ‘purpose’. What do I do now? Where do I go from here? I’m at that place right now and it’s not easy. No part of RA, depression or any illness is easy, but no one mentions side effects like your mental health taking a dive.

My youngest moved out on her own this spring so I have that empty nester thing going on too.

If you are diagnosed with an illness do consider care for your mental health as well. It can be a tough road and just having someone to unload onto who is unbiased can help immensely. 

I’ll be adding more views on depression in the future. 

Enjoy the summer

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5 years & holiday reminder

I can’t believe it’s been five years since I first signed onto WordPress!

With the holidays coming up I wanted to offer support for anyone who deals with a chronic disease. December is brutal, too often when we are told to enjoy what we have. More often than not we’re reminded of what we don’t have. Our health is a biggie here, missing family and friends who are no longer living is another. Some families just don’t get along too. Add all of that on top of media/society pressure to have the perfect Christmas, to spend money you don’t have and there’s a recipe for a crushing disappointment.

I’m at a point in life where the people make the holiday for me. My kids especially. I refuse to be pressured and I let folks know if they’re headed that way. I use to bake tons and went all out with cheesy Christmas decorating. Now it’s a much simpler approach, the easier the better. For so many years I made the holiday, now I want to just enjoy the moment.

If you are chronically ill, sick and in pain, cut yourself some slack. It’s stressful for people who aren’t sick. Rest often, if help is offered take it. I cannot shop alone anymore, bags get heavy fast.

Think about the meaning more than the money.

Do something you enjoy if your heart is hurting.

Most of all be gentle on yourself.

Happy holidays

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RIP Mandy 2002-2015

Posted from WordPress for Android

End of summer 2015

It’s been a heck of a year so far. Recently I noticed that I can no longer stand on my right leg on its own. It gives out. I’m having to modify how I walk and move again, also stopping yet more activities. I’m not managing disease progression well, I get use to how things are then they change again. Pain levels are getting higher too. I’m not feelin this.

Went to a farmers market today and nearly tripped backwards over someones loose toddler. Yesterday it was a 3 seater stroller & loose baby. I’m becoming all too aware why you don’t see lots of disabled folks out and about. The world is a minefield of disasters that are nearly missed. Also, turning babies and toddlers loose in a crowded area is rude and thoughtless. Why should I have to watch out for unsupervised children? I told one woman off yesterday, you can’t watch your kids. Keep them home!

Between that and just rude people in general I stay home most times. I’m intolerant of the ignorance of others and tend to say something. Tired of the stupid looks and staring. I’m disabled, get over it.

Posted from WordPress for Android

The hole.

I have been dealing with a really bad bout of depression lately. Unfortunately I still see ignorant and thoughtless reactions to it.

Just throwing my opinion out there but why can you no longer express emotions that are not sunshine and rainbows? I find most are extremely uncomfortable with pain. Emotional and physical. Why? Pain and hurt are normal emotions we all experience. It is quite absurd to me that human beings are so fearful of it. I don’t understand the fear of reaching out to someone who is hurting at all.

I know of many who experience depression and many of them keep silent. I understand why. People will go out of their way to avoid you and your ‘misery’. Also you’re stigmatized to high hell. Because that’s what people do to others with illness. I’ve been asked what I consider ridiculous questions. Talk to someone? Get help? Blah blah blah. I have had medication resistant depression for 35 years now. In that time frame I’ve talked to psychiatrists, psychologists, therapists and Doctors. Tried every medication that is safe for me. Crisis lines, friends and family. Nothing has ever gotten rid of it permanently.

If you have depression you have my sympathy and understanding. It’s like having a rabid angry monkey on your back all the time. And sometimes modern medicine and therapy does not help.

It is not your fault.

July 2014

I have a lot on my mind lately. First I want to address comments made on the most recent post I did on depression. I have had chronic medication resistant depression since I was about 6. So that is around 35 years of me living/dealing with it as best I can. To make any suggestion that I have not tried everything possible to get relief is preposterous. Also to imply that a suggestion will change the way I think, to me anyway is amusing. The best part of me is that very thing, my willingness to be myself. Your suggestions will fall on deaf ears. I am and will always be, my own person.

In the rheum department, I am quite frazzled. I fight like hell to claim the physical part of my life back and it’s not getting any better. I was told if I kept at it I would see results. I do not improve. Just lose more little abilities as time goes by. I keep moving hoping for more gain, only to be gripped by cramps and pain. My right leg has an attitude of its own now. If by chance it slips off the bed I can no longer make it lift unless I use my arms to physically move it. Brain says rise and the command is outright ignored. What the heck is that about? I cannot lift my own freakin leg? Come on now.

I need help to go shopping. Lifting 2lbs of sugar is now (to me anyway) an Olympic event. Using a knife? Let’s just say I don’t cut my meat anymore. Getting up off a chair? Hardy har har. I love being outside, but now I am paranoid of the sun because of biologics. I don’t need cancer thrown into the mix as well. I avoid interacting as much as possible. It’s no longer in my power to listen to anyone talk about how sitting still all day would make them crazy. Or that a desk job would kill them. Gotta be productive after all. Meanwhile I am listening to how much my life is worth to other people. Even if they don’t realize it. I don’t go out shopping much. I find it makes my anxiety haywire. For fear of tripping over unsupervised children, sick people hacking all over, pushy rude adults, lunatic antivax’rs and drivers who are in a rush.

I don’t do much in my opinion. Things that I could do in under an hour now take much longer. Frustrating way to have to live. Listening to people who aren’t sick makes me feel as though I do even less. I don’t live. I exist. Rheumatoid Arthritis stole a big part of me. I don’t recognize what’s left.

Looking back.

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I have wanted to write about or more fittingly ‘purge’ some feelings I dealt with last year waiting for enbrel to work. I’ll start off with some history first. I started the biologic medication enbrel January of 2013, as we’ve all been told and I expected, it can take 3 months to start to work. March came and left and I still felt no different, my rheumy and I gave it more time. Because lets face it, there’s not an endless bunch of biologics to try and each one should be given the chance to work. June came and went and still nothing. By the time summer came around I was in excruciating pain. I had a hell of a hard time dealing with it, my rheumy would only prescribe naproxen and that pain-killer did a whole lot of sweet tweet all and in my opinion was useless for my pain. Most times I felt like I was being ripped apart from the inside. It was HELL. Laying in bed twisting around in pain nearly losing my mind. Pain on that level I swear turns a human being into a primal monster who only wants it to stop. My fear and anxiety skyrocketed and my instinct to protect myself overwhelmed me. A wounded bear backed into a corner describes in a nutshell how I felt. At that time all I felt was pain, I was not myself at all and I was desperate for relief. Marijuana didn’t help as much as it usually did and I may as well have taken tic tacs instead of ibuprofen, naproxen or Tylenol. I at that moment considered something horrific and at that time it seemed completely rational. I was going to ask my man to see if he could find Heroin, anywhere. I was desperate, screaming and crying in my bed, just wanting the pain to stop. I had no other option in my mind, Dr’s ignored my pleas for pain relief. I was treated like a drug seeker in the ER. My RA was brushed off and I was left to deal with it on my own. You know you’ve hit a low point in your life when you even consider that poison as ‘relief’. I did not want to get high, I needed the pain to stop, now. It never went beyond that request thankfully, afterwards I was alarmed that my mind even went there, but the effects of pain cause irrational thoughts. This I learned only by experiencing it. I got through that moment by smoking a lot of marijuana that particular night, to the point where I passed out. Thankfully.

My enbrel finally started to work in September of last year. My other Dr started me on cymbalta to help with the pain in September also. I was taking tramadol for pain before cymbalta but it was not working as well by then. I still feel pain even with these meds ‘working’. RA really frustrates me because it is not predictable and you cannot plan around it. I never know what each day will bring.

Recently I viewed a story on CNN, where they reported that many heroin users started using that drug for pain relief. My heart sank because I knew why those poor folks had seeked it out. I do not judge them, I feel for them. That is no place a human ever wants to be. Your instincts for self-preservation take over, the pain is your master not you.

It is my deepest hope and wish that some pharmaceutical company creates a pain-killer that works without the addictive side effects of opiates. We all deserve pain relief without the cost to our souls.

Your strength.

Good day eh. Living with chronic illness is tough but time and pain has taught me much about patience. Before being diagnosed with Rheumatoid Arthritis I always expected a quick fix to any ailment I had. After diagnosis I quickly found out that the medications for RA do not work fast at all and can take months to show any positive effects. I have over time learned that with supplements too and also what I eat. Before getting ill I loved my food, ate lots of carbs and other crap, didn’t care about my weight or if what I was eating was making me feel gross with GI issues. But since losing my appetite for the most part I make sure to (most of the time) to put good fuel in for my body to use. It has made a difference in how I feel overall and empowers me in a sense that I’m helping my body do the best it can. Chronic disease can make you feel weak and powerless, no known cause or cure, what ifs and should have dones. Dumping most of the junk and greasy food did nothing but help me out. The fact that RA is linked to heart disease makes it easier to choose healthy foods.

Depression is another ghost that haunts me ceaselessly, that is a ongoing battle here. I was depressed before RA, afterwards when the disease started taking its toll is when I really got lost in my own thoughts. Uncertainty along with pain, heavy duty meds and the rampant misconceptions about RA can put the toughest soul on edge. I sometimes wonder if people are judging me because of depression when there is nothing I can really do about it, I take what’s prescribed for my depression and have tried any new medications that became available. I have been asked if I was diagnosed properly,  I’m pretty sure what I’ve been dealing with since the age of seven is depression and unless you’re a Dr or other professional don’t bother wondering. This is the reason I keep to myself most of the time, I refuse to be patronized and am smarter than most realize.

If I’m not online that is a good thing, I would much rather be busy doing something other than on the net. I find it boring as hell now and mostly pop on to see my wonderful supportive friends and how they are doing. I love all of them ♥.

Cheers!