Wednesday, April 23, 2014

Spring is Renewal

I love feeling the sun on my face. There's a certain buzz around spring that is the excitement of fresh new beginnings. The hope of summer picnics and blooming flowers and gardens.

Then there's also the fear of sweltering heat. Thunderstorms and tornados. The buzz of mosquitos and bees and trying to keep up with lawn care.

See? Two sides to every coin. Optimistic or pessimistic?  I don't know. Realistic?  Probably. But the Libra in me preaches balance. Finding balance. Living balanced. Emotional balance. Now if I could just get the pain side of my brain to work as a team with the rest of my body, I would be pleased.
I suppose there's no time that you would say ok...its 3 pm I will take my pain now. But boy it sure would be nice to roll it up and stick it in a box and have a pain free week.

I know within my heart that God gave me this for a reason. I know there's more to it, like genes and all that but there just has to be a reason. I know my God is a loving God, I do not believe that I am being punished. But as my Pappy said more than once. God has a plan for me, and as long as He still has something for me to do, I will be here. So here I am. Hoping that I can reach someone, anyone who battles like me everyday. That someone that sometimes is awake all night because of pain and cursing the heavens for relief. That someone who feels lost, misunderstood, and alone.

I'm here to tell you that you are not alone. There are many quietly grieving their life before pain alone. And that's exactly why I started this blog.
Every day I hear but you are too young for that! Or many others that we will discuss at a later post ( watch soon for 10 things NOT to say).  I agree in some aspects. You are right I should be too young to be handed a life sentence of grueling pain, feeling like your joints are going to explode,  feeling so exhausted as soon as you wake up in the morning,  like you need a nap after you take a shower...yes I think I'm too young as well. But fact...there's also JRA which also effects children. So yes I want to be too young. I want the children that are suffering to be too young and I want it all to be cured. Hhhmmmpppf. I guess thats too much to ask and maybe some day there will be. I'm very lucky with my meds. They are slowing the process of my crooked hands and toes. They still hurt though. And I know I'm not the only one.

I've been trying to find my balance for years now. I don't have any magic pills or herbal rubs or fad diets but I do have experience.  Real life experience with pain. I'm now rating my pain daily, and keeping track. I'd like to see if there's a pattern to the cycle of a flare. I'd like to name him. This pain. Fred. So when someone asks how's Fred today? Oh...he's pretty mean today. Or..Fred..must've taken a vacation, haven't seen him today. It would be so much easier than just saying I'm hanging in there ( my standard go to answer). It seems that it would be rude to say...oh hands feel like they're about to explode and my ankles feel like softballs and my knees are grinding with every step and I have a rash and a bruise from the lava filled shot I injected in my stomach  last night. Or the always happy..I'm fine, how are you? With no acknowledgement to the screaming inside your mind.
Guess there's a balance in there somewhere.  
And so with Spring and so many things I want to do, I even have to remind myself that I can't.  I dream of dancing. Dancing has been a love of mine always...swing..hip hop...line..any music any time. I do still dance occasionally but not all night or even around the house like I used to. Sometimes I'm limited to chair dancing or car dancing. And thats okay,  it's my new normal.  But, I obviously miss it if I'm dreaming of it. Adjustments-life is full of them. My gardening abilities also adjusted...I sit on a 5 gallon bucket to work on raised beds. Its still harder than it ever was, but I'm still just as proud and happy to participate in the ways I can now. See, it's still finding balance.

Enjoy the renewal of spring, with a promise of hope, and balance old habits with your new normal. Find renewal in yourself.

Monday, April 21, 2014

Finding Strength

Finding optimism while fighting fatigue and chronic pain is something like looking for a shiny pot of gold at the end of the rainbow. Sometimes though, you see that shimmer and if you have faith, you know it's possible.

If you are just starting your journey with a diagnosis, this concept will be difficult to imagine. In fact, it may be impossible to comprehend. But have faith, there will be periods of relief. Moments that you will feel human and days that you can still feel like a participatory part of society. There will also be days that you will pull the covers over your head and try to forget the world. The thing to remember is that there will be both.

Don't beat yourself up on the bad days. Fluctuations in weather, changes in diet or added stress can all easily work against you in causing a flare. Be a chronic procrastinator. Learn that there is always tomorrow, and it has the possibility of being better than today. Have faith.

Inspiration found in a card from a friend
About 2 years into my diagnosis I finally found a balance of medications, chiropractic care and multiple alternative therapies that gave me enough relief that I had a social life again. I had a great year. A few flares in there, it wasn't perfect or remission but it was manageable. And then it stopped, abruptly, and I was scared. The thing was, I was more scared on days that I felt human than the days that I was stiff and hurting. I was frightened that the next day I wouldn't get out of bed. I was scared of what the next day would bring. Equally frustrating was the fact that I had been doing so well and the rug was once again pulled out from under me. Last year was rough. I crawled back under the covers and wasn't sure I could climb back out. I had to explore new options, ramp up on new biologics and start all over again. I had experience the second time around. I'm sure it will happen again, it's inevitable. My hope is that I will tolerate it more gracefully next time around. If I don't, you can feel free to direct me back to this post for a reminder. I can't live in fear of tomorrow, because I don't know what it will bring, but I can live for today in pain or not.

I was a strong,self-sufficient, multitasker extraordinaire for 30+ years. Being "sick" robs your self esteem of that notion. Chronic pain strips you down and leaves you raw. There's a multitude of things that I can't accomplish anymore, there's a very long list of things that I can't do everyday. I fill out a chart with my current abilities every time I visit the Rheumy and mostly, I'm still thankful for the things that I can complete. I just do things differently now. I have a new normal.

These issues don't just affect ourselves but our families and friends as well. I have renewed strength in my marriage, in my friendships and my family. Learning how quickly life can change, learning to rely on others, was a hard road to travel. Acknowledging that I am still strong allowed me to balance the weight on my shoulders.

We don't choose to have a disease, disorder or problem. But in finding balance and keeping faith, we can draw from strength and carry on.

With the new day comes new strength and new thoughts
-Eleanor Roosevelt 

Thursday, April 17, 2014

Depression Part 2

With any condition, research is invaluable. There are so many routes to take and from my experience, you will hit a dead end or two or three.  The important part is not giving up. Easy for me to type, huh? Not always the easiest advice to follow. 

Physical Aspects

Depression is like having 10 lb weights strapped to each limb, a rain cloud hanging over your head, and the flu all at the same time. And that's before any other chronic pain conditions. Physically depression is exhausting. Feeling tired upon your already fatigued body. This makes recognizing depression as a separate issue difficult at best. It's frustrating to try to decide which condition is keeping you in bed that day.

Depression, for me, is like having a stranger shadowing me all day.The splinter in your finger that isn't visible by the naked eye but you can still feel it. This is the hardest part. When we ignore the issue it only worsens the condition. 

Reaching Out

Fighting an auto immune disease is more than a body should have to do in a day anyway. Ignoring depression can only aggravate your pain symptoms. Don't be afraid to reach out, talk to a friend or even do your own research. 
I'm lucky in that I have a close friend who also recognized how low I had become and even though I didn't answer her call for weeks, she kept calling. She lent a shoulder to me when I needed it and didn't preach to me about meds or therapy or what was wrong with me, but offered insight and support. She asked questions and allowed me to come to my own conclusions. From there, I talked with my doctor and found new options that I didn't even know existed. 

You see, when you are that far down, it's difficult to grasp the rope and pull yourself up. So if you notice The Big D shadowing someone you care about, maybe find a way to throw them the rope. 

Alternative Options

Finding your way out of the tunnel is also exhausting. Having support from family and friends is so important. Whatever your spiritual inclination may be, use it. a candle. Find your inner strength.
Music can lift a mood by leaps and bounds. Turn on a new station or download an old favorite but using music in the background can also help you concentrate on the next task.

Steer clear of the news. Unfortunately, I haven't found a news channel yet that only reports good news. Surrounding yourself with negativity will only subconsciously take your mind to a negative space.

Write in a journal. Having an outlet to release all that's on your mind can give you a release without feeling you need to burden someone else. You don't have to keep it. I have been known to vent and rant and rage and then throw it away. Just getting it out, helps.

Find something productive. Craft, paint, volunteer or try a new recipe. Now, I know you are thinking I can't possible even think of any of this while I'm in pain. It won't happen every day, or even every week, but finding activities that you can be involved with will help return your vitality. There are many organizations that use volunteers to simply make cards for nursing home patients for an hour or so at a time. If your mobility is limited, find something to get your mind flowing. It may sound silly, but even a crossword puzzle or board game can be uplifting when you finish it.

Don't Be Too Hard on Yourself

Give yourself a break. Just like fighting chronic pain, depression has ebbs and flows. Don't expect to be excitedly happy every day, but don't predict that you will be lower than low all the time either. Learn your limitations and set some goals. Knowing when to rest is just as important as finding activity.

Build your support system of options. Don't be afraid to reach out. Acknowledging your shadow makes it real. Reaching out is not weakness, it is strength. When you feel like you can't find hope, look around because I'm sure there is someone close by who will hand it to you. 

Wednesday, April 9, 2014

Depression and Chronic Illness, Aha!

Depression. It's an ugly word. The word itself makes you think of cloudy skies and sad commercials. You just thought of one didn't you?

Depression and anxiety can sneak up behind you and lurk in your shadow. You don't even notice the Big D standing behind you slowly cloaking you with a film over your heart.

Therein lies the problem.You are already in pain, you are already fighting fatigue, you are already feeling down, so how can you possibly know that you're depressed?  Am I feeling down because I'm in pain or in pain because I'm feeling down? When pain levels are high so are anxiety levels. You might as well not expect me to concentrate or carry a conversation because as much as I truly want to brain is busy doing things that are out of my control.
Many (not all) physicians are quick to pass out antidepressants at the first sneeze. I denied them for years. Then when I finally went in open minded I said proudly "only because it's for pain". Still denial. But I tried them, because I was assured they also help with pain and also I can't take narcotics and function at work. Then I gained 20 pounds which didn't help my joints, felt loopy all the time and more tired than before I started them. So, in my further clouded moment I told the Doc he must be wrong. I'm doing this without these meds. And I did, I went gluten free (for a short period of time) finally got biologics, took my vitamins and started feeling better-well at least manageable. I requested vitamin level blood work. I was extremely B & D deficient and completely convinced that would solve the problem. And it did help, for awhile. Then after 2 years when the first biologic stopped working, Big D camped outside my front door with the boogeyman and the werewolf and all other scary nightmare creatures. I ignored them. I knew they were coming to talk to me. To put that warm blanket of deceit over me. And without any treatment or even admitting to myself there was an issue. I opened the door myself. 
You see, depression has several stigmas and I was prideful. I believed those stigmas or at least worried about people that did and I felt shame.  Shame about having this illness, shame about things I wasn't doing at home, shame about taking things away from my husband and son. Shame that I might be depressed and someone might know.


Now, I know that there are many types of depression and anxiety. There's even more treatment options. I'm not a licensed medical practitioner, but I can put it here for you in layman's terms when it comes to pain and depression working with eachother.
Depression hurts. Yup, we've all heard that commercial and I am not advertising for them. It's unfortunately the truth. Especially for those already in pain. For those that didn't get the instruction manual...its lovingly referred to as painbrain.
Painbrain is caused by your body and your mind fighting eachother (or maybe a strongly worded discussion). Your body is already sending signals to your brain about pain. Because your pain doesn't go away, your body is starting to send stronger messages via your hormones (adrenaline). Your brain has to listen now. But its getting so many signals and warnings that sometimes the circuits overload and you lose some concentration as well. The body fatigues as it would naturally after fighting an illness.
This also leads to painsomnia. When you can't sleep due to pain and the fight or flight signals your mind is receiving from those warning signals.
I didn't recognize it as the Big D. I was losing interest in everything.  I didn't want to leave the house. My pain levels were off the charts and if I made it through a work day all I wanted to do was sleep. Denial even then.

So there in the middle of my denial, I had an AHA! moment. Recognizing depression and anxiety as a separate yet connected issue with pain is important.  I went to talk to my doctor. Who also asked alot of questions and spent a great deal of time helping me understand the link. Getting over the stigma was the hardest but once I found the tools I needed to connect the dots, I was able to resign myself for treatment options.

Depression, part Duh! To be posted later this week.

Asking for help

When you are feeling overwhelmed with life (which is generally the way of life and a chronic disease) support from friends and family is so important. 
Even though they can only sympathize and empathize with us, encouraging thoughts and random moments of "Hey, I know you're struggling" go a long way.
Looking back, my support system has traveled this twisted journey with me every aching step of it.
My family, friends, coworkers all have come to learn as much as I have along the way. I don't know how I would get by otherwise.

The key is communication.

If they don't know how bad you are feeling they don't know how to help you. This was a difficult process for me to learn. I prefer to be self sufficient.  I don't like to ask for help. When there are days that you need help with everything from drying your hair to disabled parking, your self esteem takes some pretty hard knocks.
Asking for help is frustrating at first, but don't be defeated. Bring some ease into the conversation. It doesn't always have to be about what you can't do. Simply stating, I can do X today but I will need help with Y next, can subconsciously alleviate the pressure of asking for help.

I am lucky because my husband helps me a lot! He carries in the groceries because I need extra time to maneuver the stairs. I put away the groceries as he brings them in. We both take action, that's our system. My hands are good some days and horrible the next. I can not expect hubby to know how to help me if I don't express to him- Hey I'm having a bad day. Simple as that. He then knows not to rush me and I need some help. Hubby asks are we using "princess parking" today? (On days that I am moving well I don't use my handicapped parking..someone else may need it more than me). Of course, some days it just visible in my limited movement.

So, my suggestion is set up your code. Find your terminology that works for you and your support system. Otherwise you take a chance of knocking yourself down mentally and physically. So, Arthur is in a bad mood today. My hands are yelling at me today. When you have established that yes, in fact, help is necessary then think of it on your terms. You may not be able to accomplish everything as you did before but you can still be productive in other ways. Plus, having your own code can help lift your spirits and keep you from feeling like a weakling.

Please know I've had those lower than low times, when the pain is bad and I couldn't even imagine how I could possible make it another day. Days that I pace, and lay down, and pace and cry. I promised from the beginning not all "hearts and flowers" in this blog. Just understand, that every day won't be as excrutiating as the last. The heck of it all is, some days I don't know if I can dress myself, and some days I don't want any help at all. The important thing is to keep trying, because tomorrow might be a better day. And when you have a "good day" take it and RUN (metaphorically speaking). Drop everything else and enjoy your good day.
Your support system can be there for you if you allow them to help. Its okay to ask for help. And if you aren't up for talking about it go to your code.
And I will tell you, I've had pain brain all day and I don't like Arthur very much today either.

Friday, April 4, 2014

Touch is healing and scary

My father taught me early on the importance of a good hand shake. A handshake should be firm and definitely not a limp fish. That's ingrained in my mind. Now from an arthritis perspective, meeting someone for the first time is nerve racking for me. Not wanting to come across rude, I often grin and bear it. Truth be told, I try to duck hand shakes all together anymore. 
Sadly in avoidance, I have been known to dig for an imaginary emergency in my purse. The ol' keep your hands in your pockets comes to mind. And there's the always popular politely keep your hands behind your back. Probably not the best options, but depending on the day and pain level sometimes you just can help it. 
Germs are my other reason for not shaking hands. Most noteworthy medications used for autoimmune disorders drastically compromise the immune system. Shaking hands is just not always possible. I think a nice respectful head bob should quietly replace the germ transferring painful motion of shaking hands! 

There are buttons and stickers and magnets available that simply state " I'm sorry, I don't shake hands". I suppose that's fine as well, but seems a bit forward to me. So the question is, TO SHAKE OR NOT TO SHAKE?

Touch is comfort? 

It can be when pain is not severe. A hug, a snuggle, and sometimes just a hand on the shoulder. Some believe that healing energy is passed through touch. Others believe that another heart beat is soothing. I believe anything is possible and truly just knowing that someone else wants to care for me is often comfort itself. 
Not necessarily human contact, pets can even be a source of comforting touch and good snuggle buddies. My pups definitely sense when I am in pain. They stay right by my side when a flare occurs ( a blessing and a curse). 

And then there's pain brain (many factors to pain brain will be eexplained this blog) 

I could quote some technological medically correct factoids here but to keep things in my terms. 

PAIN FRENZY- when pain receptors in your brain are firing in so many different directions that your mind overloads. It hurts to have on clothes. Sharp sounds hurt. It hurts to think. It just hurts. 

**For those of you visiting because you love someone with chronic pain, please take note. 

We do not want to be cranky, or testy, or rude. Pain frenzy is out of our control. It does not give us the right to be nasty so a gentle reminder that said crankiness has ensued will do. However, when you see the signs of pain frenzy, you may want to proactively disperse endorphin producing chocolate and back away. 

Actually, some soft relaxing music or the hum of a fan can be soothing. By eliminating other background noises that seem magnified during pain frenzy you are removing a trigger and helping to calm the mind. Everyone has different tastes in music but particularly, I use instrumental cello music or yoga inspired relaxation music. 

Short of voodoo, any method that is legal and helps subside pain frenzy is worth try to me. 

What helps this time may not the next. Don't cut yourself short by only using medications to ease pain. Explore new options.  

Thursday, April 3, 2014

Uncle sing a song and dance a jig

Unsure if you would actually call it luck but my family is for the most part very understanding about my limitations. Sometimes a gentle reminder is needed but it doesn't take much and for that, I am grateful!

Because of my Uncle Larry setting an example of strength and courage before me, I had inspiration. He had crooked hands and crooked toes and a wild ornery spirit! But he didnt want pity and mostly didnt want any help. He lived through RA like no one could have imagined. He worked....played with grandkids and was known to wiggle his fraile crooked body on dance floor now and then. But dont pity him. He was Cowboy Tough.  He was a hard may take him extra time but he would get it accomplished and with a smile. He always had a smile or a song to sing . I miss him very much. And I feel an honor and strange need to follow in his footsteps. 
It frustrating.  I have all these medications now that he didn't have. I was able to be diagnosed before any major damage was done. So with that and more progress in technology one would think all is okie dokie.  And medically speaking...if my blood counts are decent and my liver isn't falling out and my crp is level then huh? I must be ok. Really?

Cause that doc doesn't understand that Im 40ish and not 129ish. And I have a family and dinner needs cooked and a job..yes a real life job. That with requires me to unhook my hands every morning, so I can hobble to the shower and stumble through my morning. I was already exhausted when I woke up. So I am finding new ways to cope and new tools to use and maybe I can help someone else find their inner cowboy too.
And, I adjust. I follow the lead Uncle left for me in his legacy. I want to be cowboy tough. And I want to sing and smile through the pain because if I dont I may curl up into a ball and not come out. I still have life to experience and foods to taste and places to travel. One day at a time. One hour at a time. One minute at a time if thats what it takes. I will fight, I will cry and some days I will rest. Not because I'm lazy or depressed. But because I really have plans to get up tomorrow and sing and get to work and tell myself I can get through one more minute. I can do it because I know it can be done. Uncle Larry did it and I will be proud to follow his crooked cowboy tough path. 
Thanks Unc for showing me the way!