Feeling Judged? How to Deal…

First decide,  are they judging us or are we feeling judged there’s a difference!  I don’t always remember these things…  It hurts me too, but on the good days I can.  On the days I have the strength 🙂 You got this!

IMG_20180305_203618_093

Judgers can be truly ignorant people.

Take their power away     realize sometimes…. those judgers are just plain dumb and don’t know diddly squat!

They feel awkward and don’t really know what to say

They tried to say something, it just came out wrong    Give them kudos for trying,  at least they tried.  Many people can’t even bring themselves to do that.  It’s not easy knowing what to say.

Deep down they’re worried about being judged themselves   Maybe their self worth comes from ‘doing things” too.   Perhaps they were raised with this belief.  I’m willing to bet their recognition and self worth is gained from doing these ‘things’ and they have their own insecurities.  They are fearful and afraid.  The ‘doing things’ is ingrained in me too and I’m working on it!

Turn it around  ARE THEY  scared  to go through what you’re going through?  We should give people the benefit of the doubt (a few times).  But, you do not deserve to be treated this way.  If it continues…   remove yourself, do not play the victim,  you have the power to change how they treat you. Don’t just sit there 🙂

Some people just suck!   Yes they do.  Some people will see you’re weaknesses and know how to wound you where it hurts the most. They’re just born that way, don’t waste your precious energy on them, save it for you.

When we’re struggling it stings!   and really when we’re in a good place what they say won’t bother us.

This isn’t their normal   it’s not usually on purpose or pre-thought out. The judger didn’t wake up in the morning with the plan to hurt you.

They just hit on an insecurity we’re already feeling ourselves and we felt judged, there is no magic fix.   Time will help , time to adjust to your new life,  time to come to terms with the changes.  I still grieve the loss of a life I thought was mine.

Take a moment   The next time you’re feeling judged,  take a moment to understand why. Look at the judger and understand why they judged,  where it came from, what made them say those things and why it hurt.  Look honestly at yourself, was it really a judgement or are you just in a really low place and it felt that way.

We’re not so special    everyone gets criticized.  We weren’t singled out…  Those judgers judge all day, watch them!

Sometimes we’re more susceptible to feeling this way!    But sometimes we need to tell the judger to get lost!

This is it!  This is my life and when a part of me doesn’t feel I’m living it to the best of my abilities then I have to change that.  I have to find the things that fill up my tank and feed my soul, find the things I can do!!!  Then really what others say won’t matter because I feel good about what I’m doing.

Let me know what runs through your head when feeling judged? How do you turn it around?

 

IMG_20180224_193602_253.jpg

Advertisements

How to: MEDICAL Pain Management

Your medical pain management will be determined by your pain needs as an individual.  It involves a multi-modal approach as there is no ONE pill that fits all; even though we wish there were!

_20180205_174430.JPG

You’re goal is to try and cover as many angles as you can when you’re struggling!  But, backing off on those angles when you don’t need them anymore. You’re always striving for a balance between the most effective amount of medication with the least amount of side effects.

IMG_20180124_150436_251.jpg

BALANCE…

 You are NOT aiming for pain free here… that just ain’t possible! We’d have to be unconscious!!

FIRST OFF: SET YOUR GOALS take a moment to think about what you want to achieve. Aim low at first  we need to see some success.

I want to be able to go outside and walk at least 1-2x a week, I want to be able to participate in my kid’s lives. That doesn’t mean I’m on the field participating in the Parent vs. Kid soccer game… I’d be in a heap of pain and an embarrassment to my kids. But I can and do want to go shopping with my girls, go driving with my son or help him with his homework and hang out with my hubby. I wanna be able to get up out of bed most mornings.

20180205_174518

MEDICAL PAIN MANAGEMENT IS NOT ENOUGH ON ITS OWN… IT WILL NOT WORK IN ISOLATION.

To treat the pain of Rheumatoid Disease you will be using a combination of many small things along side your medications (ie): time management, a nap before or after an activity, pacing yourself, distraction. In other words you will also be practicing ‘self care’ and all those bits and pieces you find work for you!  They will work in tandem to allow you to meet the goals you set and hopefully this happens more often than not.

IT’S NO QUICK FIX! 

PATIENCE, FINE TUNING AND THE OCCASIONAL TWEAK WILL BE REQUIRED

Just like life, your pain will change… sometimes you will need less, sometimes you will need more. It’s a fluid process and if you understand the roles of each medication you will have more control and can become an active participant in your plan of care! You and your Dr. are a team!

ACETAMINOPHEN is an over the counter medication. It may not be strong enough on its own but please don’t discount its worth! It plays an important part. If you are able to take Acetaminophen and have cleared it with your Dr. it can lessen the number of medications you need and the strength of their dose.  This is an important role as lower doses of medications will decrease overall side effects. The role Acetaminophen plays in Rheumatoid arthritis vs. Osteo arthritis has not been as clearly defined. Only you and your Dr. can determine how effective it is for you.  Sometimes trialling a medication is the only way to determine how helpful it will be.

SIDE EFFECTS OF MEDICATIONS CAN BE DOSE DEPENDENT   Meaning by decreasing the dose you can reduce the side effects.  Something worth asking your Dr. before you give up on a drug.

SOME STRONGER MEDICATIONS (IE): THE OPIOD/NARCOTICS ARE FORMULATED WITH ACETAMINOPHEN ALREADY IN THEM  And for this reason you cannot add Acetaminophen to your regime if you are already taking it!

IMG_20180114_165047_156.jpg

THERE ARE NOT AN INFINITE NUMBER OF PAIN MEDICATIONS.  Make sure you have given each medication adequate time to work.  With your Dr. you have attempted every tweak possible from the dose amount to the dose frequency to try and lessen the side effects or increase the drug’s efficacy. Explore all your options with each medication before you give up and subsequently lose one of your options.  Can you take it with food to lessen the nausea, can you take it at bedtime to sleep through the nausea, can you decrease the dose and add a small dose of something else.  Can you pre-medicate with an antiemetic/anti nausea medication or drink ginger tea prior to your dose. There is no one size fits all here, and you won’t be the first person to experience your particular side effects.  Your Dr. or nurse may have some great suggestions.  Finally, its your choice, if you are miserable, only you know whether dealing with the pain is better than dealing with the side effects.  It is still all about living YOUR best life.

IMG_20171113_122538_094

MAKE SURE YOU TELL YOUR DR. ABOUT EVERYTHING YOU ARE TAKING, including your herbal remedies, vitamins and supplements because of the possible drug interactions or side effects. There is a definite place for these adjuncts.  But your Dr. has to know what you are taking in order to be able to prescribe the right drugs to go along with them.  They will not tell you to stop taking your adjuncts unless there is an evidence based reason to do so.  But ultimately you will know what works for you, and it’s your responsibiliy to vocalize that.

NON-STEROIDAL ANTI-INFLAMMATORY DRUGS (NSAIDs)
NSAIDs are a type of analgesic or pain killer that acts directly on your inflammation. Like steroids they decrease the amount of circulating prostaglandins. They come in varying strengths starting from over the counter medications such as Ibuprofen and ASA to prescription strength such as Naproxen, Diclofenac or Indomethacin.

COX-2 inhibitors are a newer class of prescription-strength NSAIDs. Examples of COX-2 inhibitors are celecoxib (Celebrex) and meloxicam (Mobic).

In July, 2015, the FDA strengthened an existing warning on prescription drug labels and over-the-counter (OTC) Drug Facts labels to indicate that NSAIDs can increase the chance of a heart attack or stroke, either of which can lead to death. Those serious side effects can occur as early as the first few weeks of using an NSAID, and the risk might rise the longer people take NSAIDs. Although aspirin is also an NSAID, this revised warning doesn’t apply to aspirin.IMG_20180113_140247_838.jpg

YOU CAN TAKE BOTH NSAIDS AND ACETAMINOPHEN ALONG SIDE EACH OTHER WHEN YOU NEED TO.  These are two different drugs and act in two different ways! But just remember they have different dosing times. One is to be taken every 4-6 hours, the other is to be taken every 6- 8 hours.  Follow your Dr’s directions.  For some people this can be enough to get your pain to a level where you can cope again. For others there will be additional angles that still need to be covered!

OPIODS
When severe pain rears it’s ugly head! Your doctor can prescribe you an opioid, and they will do so with you under their direct supervision. Opioids or narcotics are stronger painkillers and can provide greater pain relieving effects for intense pain.  They do so by altering your brain’s perception of the pain signals it receives. Most Dr’s will not prescribe Opiods as their first choice.  They will try to gain control on lesser medications first, moving to the big guns when proven necessary.  Oxycodone, Tramadol, Morphine and Hydromorphone are examples of narcotics

It’s important to note that you shouldn’t worry about becoming addicted to opioids as your doctor will be keeping you under close observation. Addiction becomes a concern when you continue taking the medication when you are no longer having pain.  Please discuss your fears or issues re: addiction with your Dr.  They will be able to reassure you or conversely come up with a plan to help you maintain control.IMG_20180121_133345_996

ANTI-DEPRESSANTS
If your doctor prescribes an anti-depressant, that doesn’t mean you’re depressed, though with a chronic disease it wouldn’t be unlikely.

Anti-depressants are used for pain reasons too. They will help control your pain by changing your body’s brain chemicals.

DSC_2242.JPG

THERE ARE 3 DIFFERENT CATEGORIES OF ANTI-DEPRESSANTS, EACH ONE WORKING IN A DIFFERENT WAY

  1. Tricyclic anti-depressants (TCAs) examples: Amitriptyline and Nortriptyline
  2. Serotonin and norepinephrine re-uptake inhibitors (SNRIs) examples: Cymbalta and Effexor
  3. Selective serotonin re-uptake inhibitors (SSRIs) examples: Prozac and Zoloft
  • TCAs increase the levels of certain brain chemicals
  • SNRIs block the re-absorption of certain brain chemicals
  • SSRIs also block the reabsorption of certain brain chemicals but aren’t proven to work as well as the other two categories on chronic pain.  If you are currently on a SSRI and it’s working DON”T CHANGE what AIN’T BROKE!

 

ANTI-SEIZURE MEDICATIONS
Also known as anti-convulsants,  anti-epileptics or anti-seizure medications.  These medications work to suppress the nerve signals going to your brain so pain messages aren’t transmitted as well. As with anti-depressants, if your doctor prescribes an anti-seizure medication, this doesn’t mean he or she is treating you for seizures. Anti-seizure medications can potentiate the effect of other pain medications and treat chronic pain.  Examples of anti-seizure medications are pregabalin and gabapentin.DSC_2275.JPG

SYSTEMIC CORTICOSTEROIDS
Steroids are powerful anti-inflammatory medications that can be taken orally or by injection. They are considered systemic when how and where they are administered allows them to spread through the entire body.  They are sometimes added when other medications have not reduced your pain. Steroids work by stopping your body from producing the chemicals that causes inflammation. Two corticosteroids you may recognize are Prednisone and Dexamethasone

Steroids do have certain side effects and it will be up to you and your Dr. to decide if these side effects out way the benefits to you.  REMEMBER  you can’t just STOP taking Corticosteroids—your dose MUST be slowly decreased. Your body decreases the amount of steroids it produces on its own when we give steroids to it in the form of injectable or oral medication.  If you stop taking them in medication form without titrating them down slowly your body will not recognize the need to start producing them on it’s own again.  This slow titration downwards should occur with your Dr.’s supervision and direction.  This will provide your body the time it requires to start producing it’s own steroids again and prevent an adrenal crisis and sometimes  SHOCK.

MUSCLE RELAXANTS
These medications are typically used to reduce aches and pains associated with muscles strains, sprains, or spasms. But, muscle relaxants can provide the pain relief you need with Rheumatoid Disease to manage your daily activities. They help relax tight muscles that can exert pressure on the joints, ligaments, tendons and nerves that are already affected by inflammatory changes and swelling. By reducing this pressure and pain they can also improve our quality of sleep.  Getting enough sleep allows us to cope better with the pain.

Muscle relaxants aren’t typically recommended for treating chronic pain and for some Dr.’s are controversial. There are many people they do NOT seem to help, but there are some people they work well for.  You will see them used most often with fibromyalgia and low back pain symptoms but they can have their purpose in Rheumatoid Disease as well. Your Rheumatologist or Pain specialist can provide you with more information specific to your illness and whether or not this would be an appropriate medication trial for you.IMG_20180126_105342_112

TOPICAL MEDICATIONS
Some medications are highly effective when used topically. They are also known as topical analgesics, topical anesthetics and topical medications.  Lidocaine is a topical anesthetic and can be administered this way.  NSAIDS can also be administered this way, one example would be Voltaren gel.  The systemic effects can be lessened by administering specific medications topically but, it does not remove the possibility of side effects.

  • Salicylates the same pain relieving medication you would find in Aspirin can be found in some topical heat/ice rubs (ie): products such as BenGay and A535.  Salicylates are blood thinners so again please use them under a Dr’s supervision. Some people find these work better on joints closer to the surface as they are absorbed locally through the skin.
  • Counter irritants are the active ingredients such as camphoreucalyptus oil, and menthol found in some of these preparations that act as a distractant to your body’s interpretation of pain.  They provide a hot or cold sensation which in some cases is very effective.
  • Cannabis infused creams the scientific jury is still out on their effectiveness. As with all rubs no matter the ingredients, you are massaging the area when you apply them. This will increase blood flow to the painful area.  The CBD oil is thought to decrease your body’s inflammatory response and decrease it’s sensitivity to pain. Some people SWEAR by it and some people don’t.  It works great for me in the heat rub I use. It’s dependent on the individual.
  • Capsaicin cream  Capsaicin, which comes from chilli peppers, can temporarily reduce pain, but for maximum benefits, it needs to be applied several times a day and for at least two weeks.IMG_20180113_180226_659

 

JOINT AND SOFT TISSUE INJECTIONS

Injection of steroids and local anesthetic medications into the joint or soft tissues  (ie): bursa, ligaments and tendons can relieve pain, reduce inflammation, and improve mobility.  They can be very effective.    Ask your Dr. if this is appropriate for you, depending on which of your joints is involved, the risks and effectiveness can vary.  Your Dr. will be able to provide you the information you need to make a joint (purposeful pun!) informed decision.  You are a integral part of the team.

NERVE BLOCKS are typically used for acute pain NOT the chronic pain of Rheumatoid Disease because they will only provide short term relief.  Again, depending on which joint is involved this may not be an appropriate therapy for you.  A nerve block involves injecting strong pain medication and/or steroids around the nerve to provide pain relief directly (with the analgesic) and/or by decreasing inflammation (with the steroid).  It can work very well when the sacroiliac joint, spine or shoulder joint is involved._20180121_143321.JPG

YOUR TREATMENT PLAN
Don’t be afraid to ask questions—you have to be your own advocate.

BE ON THE LOOKOUT FOR SIDE EFFECTS. If you notice any new symptoms, tell your doctor. But don’t stop taking your medication unless your doctor tells you to do so.  No one is more familiar with your body than you.

PAIN SPECIALIST OR CLINIC   PAIN SPECIALIST OR CLINIC  sometimes we need more contributors than just our Rheumatologist to formulate a successful pain regime.  Ask your Family Dr. and/or Rheumatologist if there is a pain specialist or pain clinic they can refer you to.  Let the pain specialist/clinic know which Dr’s are involved in your care so they can forward their recommendations to them.  Identify which Dr. (ie): your Rheumatologist or Pain specialist will be directing your care and ultimately write the prescriptions for any new medication you will be trialling. This will leave less room for error by having one person in charge.  A Pain specialist/clinic will also have other non- medicinal suggestions and therapies available to you and may even provide them all in one convenient location such as physical therapy, mental health, massage, acupuncture and exercise classes etc.IMG_20180129_103109_441.jpg

TRY AND REMAIN INFORMED AND EDUCATE YOURSELF

Only a few medical options were outlined here and not ALL the above angles will be necessary ALL the time.  Keep this list for when you just can’t get on top of your pain. Maybe adding one of these angles will help you gain control.  You will note I have not outlined the side effects of these medications.  This on purpose as I am not a pharmacist or physician; you should obtain this information from them. Please share this post if you think it will help someone who’s suffering and I hope you can find something that helps you too!

Every day is NOT a good day…

I feel horrible and tired, and just plain old sore. I just want to stay in my bed! I’m saying I want to, but really I need to.  This getting up thing is beyond me, it’s not something I’m able to do. I tried to be upright I couldn’t, I failed and it hurt.

I’m just lying here feeling my joints as they’re aching, my body is throbbing and every bursa I own is on fire! My fascia and tendons are shortening and tightening until grrrrrr they just won’t uncurl…

Envisioning my body so old and contracted.  The fatigue, lack of strength someone STOP this. It can’t be my life!

But, it is… damn disease, go to HELL.

IMG_20180111_120327_121.jpg

When we’re one hot mess! How are we meant to remember that maybe the reverse is true?!

Every day will NOT be a bad day

When immersed in our pain we can’t see a way out.  We feel hopeless and unable to cope. We wonder how we’ll manage for the rest of our lives. If it carries on like this,  never ending; we won’t.

But RA ebbs and it flows, it honestly does. It’s not every day that it sucks!  If we’re lucky at some point we remember it’s just our today (or this month). I’m trying to be real here.

Be gentle on yourself

as gentle this disease  

 “is not”

When we cannot see ourselves feeling better than how horrible we feel right now. A part of us genuinely can’t do it because we’re not able. Feeling better takes energy and strength and for today, BOTH things don’t exist.

The reality is sometimes it’s not within our control.

Give yourself permission to feel like dirt, for today just suffer and rest

Take your meds, crawl into the tub  (make sure someone is there to help you back out).  Pull out your hot pack and turn on the fireplace and figure out how to pass the time until tomorrow.  If tomorrow isn’t the day you feel better maybe the next tomorrow will be.  Hang in there, I promise better days will come.

DSC_2242.JPG

Another Set Back… Now My Feet Hurt!

Another set back, now my feet hurt!

You know how it is… you’re feeling good, you’re just getting into a rhythm when wham… RA throws you flat on your back!

20171127_103711.png

Don’t deceive yourself!   It’s killer hard and really depressing when reality comes rushing back! You were managing to be active, out walking regularly with friends and doing all the things you know you should do.  Then someone yanks the rug out from under you!

I get it!  I couldn’t even stand up on my own two feet last month.

Honestly,  I crumbled… from my fetal position on the ground  “No way,  uh uh, this suck’s,  I am not doing this!”

I wallowed, I got depressed and probably a lot more than “just a little catastrophic”.  I seriously felt like this was the end of the road, my feet are what allow me to put one foot in front of the other.

Rheumatoid arthritis is not an isolated disease of the bones and joints. It affects tissues throughout the body, causing damage to the blood vessels, nerves, and tendons.

So while I rested and backed off my activity I was a bit worried about my mental state and the lack of physical distraction. Without the distraction I know my pain is all I can think about.

Historically I have psyched myself up looking at instagram pics and quotes on resiliency and positivity.

This time, I’m wasn’t exactly feeling it 😦

When you’re ready and you get to the point that you don’t feel like life is about to end, try and take control; whatever control you can!

Read       I usually come up with as many things to fix my issue/feet as I can, working to identify what is going on… Plantar fasciitis, tendonitis, tenosynovitis, ligament issues, which joints, Morton’s neuroma, gout, or bursitis.  Almost all of which I’ve suffered from at some point,  bloody disease!

Identify what changed      stop and think of what you’ve been doing, is it something you can pull back on, did you increase activity too fast, did you work a few extra shifts, did you start a different activity or did you start a new stretch.  I did all of the above but I think the ultimate trigger was the new stretch! Movement is key, I don’t dispute that but, stretching like people without RA is too harsh for me.  Seriously something happens every time. Pushing to obtain greater flexibility is not necessarily a good thing with RA.  If you can change your way of thinking and just look at it as movement, doing the movement of stretching but with the goal of maintaining your Range of Motion ( ROM).   The goal being to stop your joints from seizing and to stop your muscles, ligaments and tendons from shortening and getting sticky and stiff because of the lack of movement. Use it or lose it is my motto but, I had over stressed my feet trying to improve my range rather than maintain. So REST was in order

Rest       giving my feet a chance to recover from being pushed too hard.  (This may not be the true reason it could simply be my RA, but, I’m not willing to go there yet). I looked at what I could still do;  I could go to the gym and sit on the recumbent exercise bike and still keep my body moving by taking the weight and pressure off my feet.  I have a list for those days of alternative activities.  A list I can read when I’m starting to think this is the beginning of the end.  My mind needs to understand it isn’t the end (I have to show it) and my body needs to still move to keep me in my better place of coping. More about rest and activity on my blog here

Change it up     try hard not to do one activity more than one day in a row.  This requires restraint which is hard to come by when you are excited about finding something you can do! Try and remember you want to do it forever and the way to succeed at that, is to treasure it.  Hold back,  maybe do it once a week or every couple days. Listen carefully to your body.  You want to be able to do it forever.

DSC_2149.JPG

My not so supportive boots…

Wear supportive foot wear      all the time.  We tend to revert to this only when we are sore and our body has drawn attention to our pain.  I wear my slippers (supportive comfy ones)  with my orthotics and cushioned socks.  No I haven’t always! I’m no super hero.  This new setback has drawn attention to my limitations and I am doing everything in my power to maintain control.  I replaced my work shoes as they were too old and had lost their support.  This is what helped me! You may be the opposite and find walking barefoot in the grass or sand helps you. There are two schools of thought here.  You decide!

Orthotics     my orthotics now go into every pair of shoes I’m going to wear.  Have custom orthotics made and if you can’t afford that, ask your Physiotherapist what stock orthotics you could purchase.  Even if you don’t need them now, by using them now, you can prevent issues later.

DSC_2088

Warmth      I try not to let my feet get cold, I wear socks to bed, I have a hot pack warmed and ready for when I crawl into bed.   I use a heat rub to create more heat to help relax the fascia, ligaments and tendons in my feet.  This decreases the strain and pull on my joints those tissues will exert when they’re tight.

Schedule your medications       have you been taking your medications regularly!?  I wasn’t…  sometimes it doesn’t seem like just the right day for me to take my methotrexate.  I am not willing to feel blah, nauseous or irritable so I put it off, sometimes for more than just one day.  I know (in my brain) this is not a good way for me to maintain control of my disease. But my heart says not today.  I promised myself for two months to maintain the schedule I wrote on my calendar and set reminders on my phone. I attributed the improvement in my health to the renewed consistency.  I did not flare during this time, maybe because I was doing my best to be consistent with my medications.  I’m willing to bet you have noticed too how your body feels cruddy as you draw nearer to the day you’re scheduled to take your BIOLOGICS or MTX.  This is because our body needs them.

NSAID’s     are very helpful for foot pain and inflammation.  If you can take them, set yourself up on a regular schedule during flares or injury.

Anti inflammatory topical cream or gels     my go to, as it doesn’t irritate my GI tract.  Feet have a more difficult time absorbing topical medication as the skin is thicker and tougher.  The medication cannot penetrate the skin as well.  But, it will still have some effect.

Heat rubs      help too by keeping feet warm and again relaxing those tight muscles, fascia, ligaments and tendons so they can’t exert pressure on your joints.  This will also offer you some relief.

Crutches, a cane, braces, and splints     ask your rheumatologist or Physiotherapist if this is an option for you.

Elevate and ice     elevation is your friend and this applies to everyone.  When you sit down make a conscious effort to prop your feet up on a stool, the coffee table or up on the couch.  It will decrease your swelling and subsequently your pain as there will be less pressure from the swelling on all your sore bits and pieces (joints) in the foot.  It also takes the load or weight off.  Ice can decrease the inflammation.  But, some people like myself cannot tolerate the application of cold.  It doesn’t make me feel better!   Listen to your body, it’s very individualized.

Not getting better

Ask your rheumatologist what options you have     you won’t be the first patient they have helped with foot issues, they may have a few tricks up their sleeves. We don’t have to assume it’s just part of our disease and therefore something we have to live with.  Steroid injections, splints, braces and sometimes surgery are all other options.

Add to your support team     a Podiatrist.  That’s the podiatrist’s role is to identify and treat your foot ailments, diseases and deformities. They should be able to pinpoint what’s wrong with your feet sometimes when your rheumatologist can’t. That’s their speciality!!

Physiotherapist     may be able to offer advice to strengthen, relax and adjust the mechanics of your foot and calf or even further up the muscle chain. All possible contributors to your problem.  This will also help provide some relief and support

Physiotherapist taping    once you have seen your (professionally trained) Physiotherapist who has identified your issue, research it.  Have them teach you ways to tape your foot yourself.  In my case, I was able to use kinesiology taping and once I was shown how, I could do it myself.  If the therapy is not working, speak up!  Sometimes the problem is something that needs to be worked through and there is more than one issue that needs to be addressed.  For my issue I used this taping method.

Myofascial release    again as directed by your physiotherapist.  Once they have identified the problem there are many methods you can do at home.  Take control and listen to your body.  If one method helps use it!  If another method seems to cause you more pain and you notice no improvement (actually causing a worsening of symptoms) stop using it.  To give you an idea of what I use for my current foot woes this short clip will give you an idea.

I’m lucky RA hasn’t stopped me walking for sooooo many years, I just have to keep finding ways around it. Maybe I’m just in the bargaining or denial stage of grief… it’s becoming apparent my grief ain’t fluid.  I don’t seem to go from one step to the next until I reach my goal of acceptance. Grief has accompanied me through all my years with RA.  Each time another hurdle jumps in my path, I regress back to an earlier stage.  This is gonna be a life long process dammit!

But I walked today!  I taped my feet up, put on my new boots with my cushioned compression socks and I got to enjoy this:) right up my alley and just my kind of distraction.

IMG_20171126_214319_749.jpg

Hang on to your hope! Try a few of these things, one of them will help you manage, I know it!  Follow this blog by email and you won’t miss a post.  I will also send you the occasional newsletter identifying more ways to cope than you will find here.  Please click “follow” and add your email if you don’t want to miss a post (check your spam account if you don’t receive them).  Would love for you to comment and share if you think you know someone this could help or you have found something else that helps you! Thank you!

My props:

Kinesiology Tape, Yosoo 4Pcs 5cm*5m Sports Tape Therapeutic Strips Waterproof Elastic Muscle Support Adhesive Physio Muscle Strain Injury Support Tape Roll for Athletes Knees, Shoulders, and Elbows Injury Recovery Care“>Kinesiology tape

Winter is here! And so is the Pain…

DSC_0518

Just talked with my mum last night and yes! my family now has our plans firmed up. We now know “who” will be “where” this Christmas.
As per the norm… we’ll be off to Victoria to hang out with family and friends:)  But, this year we’ll also be hosting a Xmas dinner at our house (the weekend before). 

I already want to throw everything out of the house so we’ll all fit.

I do that anyways at Xmas, just clear everything out!  I have to fit in the Christmas tree, the candles and all the cozy warm blankets;  not to mention the lights and decorations too.  Any extra piece of furniture gets relegated to the garage…  My neighbours think I’m crazy as I cart it all outside! I’m gaining control! CONTROL CONTROL, never mind my kids will all be hoarders to compensate for their mother!

So, Winter is here and with the change in season comes my pain.  I don’t know of it’s just the weather but it’s definitely cyclical.  With all the hustle and bustle of the holidays approaching, the functions and social engagements starting… take a moment for yourself and BREATHE! It’s only November.

Distraction, pick one goal towards healthier living and reach it! It won’t make your illness disappear, but might help you keep moving forward (always better than consistently backwards!) 

DSC_1007

BREATHE FRESH AIR if possible, get outside every day! Oxygenate, rejuvenate and strengthen your mind.  Its the mind that determines how we interpret our pain and there are two processes it will use. The first will determine where the pain is, how intense, and what type (ie ): is it sharp, drilling, burning or an ‘un relentless’ ache.

The second will determine the emotion that goes along with it.  It gives us an idea how we’ll cope. “Owwww! that bloody well hurts”, “I can’t do this, how long is this going to last, I’m scared, is it truly this horrible for everyone?”.

The good thing is… research shows our pain is minimized with positive feelings — like when our tanks and minds are full of connectedness and belonging; and we are feeling content, brave and supported.  But, negative feelings will have the opposite effect. I’m so sick, I’m ill, this isn’t getting any better, nobody understands and now all I can think about is the other shit that can go down! Yes it really, suck’s!

 Resized_20170323_095358

DISTRACTION insert Nature every day, you will be surprised how it helps you keep your life together, just stops it from falling apart.  The change in environment from indoors to out is better than a rest.  We’ve all heard the stories of adrenalin fuelled happenings where someone is injured and they don’t recognize the pain of injury at the time.  It’s not until later, when the distraction has passed that the pain hits.  Utilize this!  there are other things to focus on besides our disease.  Maybe even “forget about it” for a while.  That would be toooooo nice!

Give yourself a cognitive break by walking amongst the trees, head down to the water, or just take a stroll around the block. Take photographs while your out and about and view your life through a different lens. Improve your mental health and fill that empty tank.

DSC_0516

FOCUS ON BEING HEALTHIER  every day  you can reframe your life ( I dislike that word) it sometimes sounds so disingenuous.   Our life is not all about being sick and needing other people to understand.  Give YOURSELF the control, not them. Take charge! Take a moment to think about what being healthy means to YOU.  I decided I needed to actually eat my recommended daily allowance of fruit and vegetables each day. Not just think about it, or buy it and put it in my fridge! My goal was to eat three different servings of veggies at dinner.  I can tell you… I had to concentrate and plan for that one.  But, it was a simple goal to meet and I did it.   This month I will be striving to add 2 vegan dinners to our weekly meal plan.  For me this goal is two-fold:  it will save us money on meat but ultimately lessen my stress. That adds up to more health for me 🙂

DSC_0512

SHUT OFF THE DEVICES,  ESCAPE! we’re all guilty of it, its easy to get caught up in the ‘busyness’  that is our lives.  That’s how we roll!  Do not take your phone to bed with you, charge it in the kitchen or any other room overnight.  FB, Instagram and the rest of your social media can wait until morning.  Stay off the support forums tonight, the last thoughts before sleep should NOT be focused on your illness. That just ain’t beneficial.

Research spouts about our kids and the negative impact of screens daily, this applies to us too.  We all stare at screens too long!  I just had to get up from my chair and lay on the couch because my butt was killing me! Screens are sedentary.

Once you’ve achieved the first step of withdrawal, you may choose to make lunchtime a screen free break too.   For us addicts we’d still have coffee time to stay connected.

FIND A NEW INTEREST,  LEARN SOMETHING    perhaps photography, while exploring outside and taking photos.  Whether you are walking around the block in your local neighbourhood or the ‘hood’ that surrounds your work;  hone your skills at picture taking.  Learn everything you can about it.  Find something new that interests you (not just for the sake of it, that won’t last a minute).  Start a wellness blog, learn to be a chef extraordinaire, garden and grow all your own food or maybe you’ll only be able to add a few carrots from your garden to dinner like me!  Learn all the local hikes you haven’t discovered. Reduce your carbon footprint. Research the ins and out of grounding.

But, you can’t choose learning more about your disease 🙂  we do that… enough already!

_20171108_134920

Our bodies and minds want to be healthier give it a chance, and pick one!

I’m interested to hear and share what you’ve come up with, let me know in the comments so everyone can benefit 🙂

GAWD I hurt! REST or ACTIVITY?

I should be sleeping, at least resting!  But, I’m just laying in bed with good intentions… well I had intentions anyways. 

My feet were sore, and really cold so I got up and found some warm socks. I’ve put them on, and now my feet feel goooood!  The tightness of the socks taking away some of the ache.  Sometimes the weight or resistance of something like a scarf around my neck feels like too much weight and pressure and makes the ache worse.   Sometimes you’re lucky and stumble on something that works like the socks.  Sometimes someone like me will tell you the things they’ve discovered.  Just go with it…

IMG_20171105_133004_449

There is no one thing that helps. 

This nap was supposed to help me make it into work this afternoon.  Going to work is really not a choice thing, I have to go.  But, the rest would have helped.

We must be gentle on ourselves

… my latest BS phrase hah! But seriously it’s how I get through this disease, that along with a good dose of denial.  Give yourself permission to rest,  it may feel unproductive to some… but it will actually allow you to be more productive when you get up.

DSC_2090

My problem is guilt. 

“I have things to do”, “I need to earn my place and be a part of this family” , “I need to be the woman my husband married” are just some of those super helpful thoughts running through my head.  And the big one… remembering I almost broke up my marriage pre diagnosis because I was sleeping all day and all night. Only getting up to get the kids out of bed, feed them, make their lunches and drive them to school.  I’d come home,  crawl back into bed…  only to drag myself up again with enough time to tidy the house, go grab the kids, help them with their activities, make dinner, get them to bed and then crawl right back into bed for the night. I had nothing left, nothing for my husband, nothing for my kids, and nothing for myself.  Guilt,  I didn’t feel I was  the woman my husband married.  Mourning, I wasn’t the woman I thought I would be. This was the overwhelming fatigue of Rheumatoid disease.

So, REST or ACTIVITY with pain...

RESEARCH SHOWS THE ANSWER IS BOTH:   REST EACH DAY  and  MOVE EACH DAY

DSC_1876.JPG

  1. REST,  give yourself permission, or just say I gave it to you.

Figure out how to make peace with your demons and REST.  Take a nap. It’s always a teeter trotter… you have to balance and lose balance sometimes to find focus again .

Yes, today I’m skipping my rest, it’s Friday and I can hear my oldest up in the kitchen having breakfast getting himself ready,  I creak and groan (that’s my usual getting up noises).   A cup of coffee with him will be my break.  After… I will force myself to move for 10 min with a stretch video.

My motivating force behind doing this, the regret and guilt I feel if I don’t.   Not to mention how cranky, stiff and sore I’ll be. 

DSC_2011.JPG

2. MOVE, Just do it.

The movement may only be sitting in a chair lifting your legs up and down, You must decide what you can do that day.  No one else can tell you.  Somedays I can’t even sit in a chair, but somedays are better and I can walk or hike.

  1. Can help fix range of motion problems and maintain your range of motion
  2.  Keeps you joints flexible.
  3.  Will strengthen you joints and reduce PAIN. 
  4.  Will keep your muscles strong and support weak joints.  This relieves the weight and pressure on them. 
  5. Inactivity leads to a sedentary lifestyle.  A sedentary lifestyle leads to more symptoms, pain and further disability.  It also contributes to other risk factors (ie): cardiovascular disease.
  6.  Regulates inflammation. Some trials show decrease in inflammatory markers.
  7. Decreases disease activity scores
  8. Improve patient’s feelings of well being
  9.  Helps with maintaining and losing weight. Therefore reduces symptoms.
  10. Overweight people with RA put much more pressure on their joints
  11.  Distraction, there’s a phenomena of increased pain when we have no distraction
  12.  Feel good release of endorphins

There’s no reason not to do it. 

NO,  I don’t always follow my own advice, but I know there are people out there with stronger will power than me, mine’s horrid.  Besides, this isn’t just my opinion; research proves it to be true,  you have to do both. 

Click like or share and give more people a chance at succeeding!

Specific resources I use:

If I’m too sore to nap there’s a FREE app I use to practice mindfulness and meditation my headspace. 

 (my favorite) stretch video! LOVE 😍!! 

Increased pain and your cycle

You made it to late afternoon and you’re crabby, you want to “rip everyone’s head off”. You are feeling irrational and your are NOT a nice person to be around. Suddenly it dawns on you…
You are really sore!
This isn’t normal for you, if this is how it’s gonna be, you are NOT gonna cope! You start searching online… “What causes a flare?” “How do I deal with the pain?”

images

I feel this way almost every month… By the evening my pain is a 6 out of 10. I start feeling like I can’t do this! How am I going to look after my family, how am I going be a partner to my husband, how am I going to get out of bed and have a shower! I do manage to get through the evening whether I want to or not. Panicking just a bit, usually more than a bit with more than a touch of irrationality. I feel like I’m going to die! With the help of a warm bath, some Tylenol, NSAIDS and a hot pack, maybe even a walk around the block and then usually a less than stellar sleep. I figure it all out in the morning. I was in the premenstrual part of my cycle.

It’s a thing!!! You are not going crazy 😜 you really are having more pain than usual and now that I’ve seen it happen over and over it saves me a lot of ANGST! Angst leads to stress, stress leads to more pain, and it’s just a never ending vicious circle. Knowing this doesn’t take my pain away but it gives me an end to my misery… If I know it’s going to end, I can tell myself it’s only a blip. I can manage. I don’t know if this is a thing for you, maybe it is, maybe it isn’t. I’m interested to hear what you guys have figured out. Some of us are more in tune with our bodies (not me, in my constant state of denial) than others. Let me know I’d love to hear!!

Here’s a couple of links with a little more info:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4589942/

https://www.ncbi.nlm.nih.gov/pubmed/12705527

If you’d like to receive rheumatoidlife’s newsletter a couple times a month just click “follow” you can thrive too!