Zero Pain #AtoZChallenge

...zero pain.  Well, that's a dream for a chronic pain sufferer like me.  But a sweet dream I will keep on hoping for!  Come on medical science...catch up!

For anyone interested in knowing a little bit more about me and why I have chronic pain, please see my About Me page.

Thanks to everyone who stopped by to say hello to me during this year's A to Z Challenge!

For a complete list of all my posts from this years challenge, please visit my A to Z 2016 page here

When Did I Get So Old?

Sunday night I had the opportunity to go out and see my best friend perform on stage for the first time. It was great fun and I felt like myself...a feeling that has been missing lately because rehabbing my latest surgery has felt like forever! Mike (my bestie) has been playing the guitar for a couple of years now and was looking to jam with someone. He found this event, called Flash Band, and decided to give it a go. (For more information on Flash Band, go here). Basically, you meet other local musicians, and then get together to play a show after only knowing each other for a month. The theme of Sunday night's Flash Band was 'British Invasion', which was awesome!

A wonderful night was had on Sunday, followed by a miserable Monday morning for me. Oh goodie. I woke up the next day feeling like someone beat the shit out of me. I hurt so bad all over. After seeing my kids out the door for their first day of school, I went back to bed and stayed there until early afternoon. Because of my medical condition, I know that I need to take things easy otherwise I end up regretting it, but this reaction caught me off guard. After all, I wasn't on my feet at all...Mike was kind enough to get me a seated ticket. I guess I thought that since I wouldn't be standing, that I would be okay. And my feet were okay...it's the rest of my body that objected! Too much time in the car...too much driving...too long being out. Man, I feel old! Back in the day, we used to go out all night long and I'd get up the next morning and function like a normal person...notsomuch anymore.

Ah, the joys of living with chronic pain. Sometimes, you never know when you'll have those bad days...they just hit you without warning. This is why I plan as much as I can...because I know that even with all the planning in the world, sometimes it is all for naught. I guess that next time I plan to see Flash Band (because there will be a next time--I love live music) I'll need my hubby to drive me. And I probably won't be able to stay to watch all the bands :( Oh, well. It was still worth it to be a part of Mike's fan club! :)

Mike and my daughter, jamming :)

MORE Affordable Heathcare? Not Really.

Over the past few weeks I've noticed that my compound creams have started to lose their potency, so I called in to have them both refilled (I have two: one for my neck and one for my ankles). Here is where the fun begins...

Back in September, I received two letters from my insurance company stating that they would no longer be covering compound creams with certain medications in them. Of course, among those listed, were quite a few that I noticed were ingredients in both my creams. Oh joy.

The medications that are no longer covered

I called the pharmacy that handles my ankle cream and told them that before they refilled my prescription that I would like to know how much my cost would be since my insurance coverage had changed. The customer service person quoted me $55 for 4oz of the “cash alternative”. Not too bad! I had heard horror stories of prescription pain creams that were over one thousand dollars out of pocket. I considered myself lucky and was thrilled at my new price. Then I asked what the difference was between this “cash alternative” and my original prescription. I got put on hold as he didn't know the answer.

The inserts that came with my pain creams

When the pharmacist picked up, she told me that my new cream would be almost as effective as the original one, because some of the ingredients were different in this new one and the percentages of the medications used would be lessened to allow for cost savings. Umm, would this really be effective for me considering all these changes? I mean, it's not like I have a little tennis elbow or something. Hmm. So I asked how much the out of pocket cost would be if I just got my original prescription instead of the “cash alternative”. I mean, my current cream seems to be working just fine...it takes the edge off most days. And even though I still have some pain that I have to deal with, it does help. I was put back on hold again.

This time the customer service guy came back on to quote me my out of pocket cost... 

$2263.39

Holy. Fuck.

Well, I guess that's why I've heard crazy rumors about the outstanding costs of compound pain creams...because they are fucking true! This is outrageous! My jaw is still on the floor from shock.

Sooo....I'm going with the $55 “cash alternative” cream. Shocker! I figure that it's worth a try...and what other choice do I really have? It's either this, or I start taking narcotic pain killers for my pain. And I really don't want to do that!

And the compound cream that I use for my neck...I don't have an estimate on that cost yet since there were no more refills on that prescription and my doctor denied a refill over the phone. I have an appointment next week to see her and we will discuss what my options are if I cannot affordably get the same cream as before. Cross your fingers that she has some reasonable answers and options! I don't think I can handle another $2000 quote.

On a related note...

I would just like to say “thank you” to all of the sleazy politicians who have made my health care MORE affordable. You're doing a bang up job. 

 And fuck the FDA.

Voodoo Dirt Helps Arthritis

The drastic temperature changes over the past couple of weeks have been especially hard on my shitty bones, causing my arthritis to kick into overdrive and make me ache all over.  It will be 70 during the day, and drop to the 40's overnight.  Imagine if you took a hot glass straight from the dishwasher and put it in the freezer...it would shatter, right?  Well, my body seems to react with a similar anger to the temperature change.

This past weekend I barely made it out of bed because I was in so much pain.  Luckily, over the past couple of days, the temperature seems to have evened out a bit, although now I'm dealing with the achiness that comes with all this stupid rain!  My acupuncture treatment today has already granted me some relief...thank God.  God bless my acupuncturist...she is a true healer.  I asked for some herbs to help over the next couple of weeks and she gave me this concoction.

I have to take three small teaspoons a day, before meals. The taste is pretty terrible, and it looks like dirt, but all the herbs I've taken in the past have helped.  Let's hope I'm as lucky again this time around!

Here's a closeup of the ingredients:

Don't ask me about the ingredients...the only ones that are recognizable to me are cinnamon and licorice!  But if this bottle of voodoo dirt helps...then bring it on!

Have you ever eaten or taken anything out of the ordinary just to help you feel better?

Celebrate The Small Things -- August 29

It's Friday and I'm Celebrating The Small Things!  Celebrate The Small Things is a weekly celebration where some bloggers have decided to post about something worth celebrating...no matter how big or small it is.

This week I'm celebrating travel size stuff.  I have a couple of different compound creams that I use topically for my neck and ankles/feet and since I'm traveling in a few weeks, I wanted to be able to take my creams with me without the hassle of the TSA (I hate the TSA--but that's a whole other post).  So I called the two companies that supply them and asked if I could get small, travel size refills so I could put them in my ziploc baggie full of other liquids for my carry on.  Ask and you shall receive!

They are like little baby medicines.  So cute!  And bonus...I can pop one in my purse!  No more worries about being without my medicine if I'm out all day.  Total score.


Happy Weekend!

What are you celebrating?

If you'd like to Celebrate The Small Things, visit our wonderful host, VikLit @ Scribblings of an Aspiring Author for more information.  And don't forget to check out her co-hosts:  Diana Wilder, LG Keltner @ Writing Off the Edge, Katie @ TheCyborgMom, and CaffeMaggieato @ mscoffeehouse

 

New Pain Medicine Routine

I don't know why, but over the past couple of weeks my arthritis has really been flaring up.  I've lost a lot of sleep and finally got tired of feeling so terrible.  My doctor that I see for my neck pain had originally prescribed this new medicine and I decided that I should give it a try.  It's a non-narcotic pain med called ConZip, which is really a slow release Tramadol.  I've been using it for my overall arthritis flare ups and it helps take my pain from a 5-6 to a 2-3...which is a huge difference.

I still get localized pain in my ankles if I'm on my feet too long, and in my neck/shoulder area because of my occipital neuralgia.  For these areas I have compound cream that has been helping take the edge off.  The cream I have for my ankles is a bit stronger and I'd like to try it on my neck, but it's super greasy.  After twenty minutes of absorbing into my ankles, I wipe it off with a wet washcloth otherwise it's too sticky to even get my socks back on.  I'm afraid of getting it into my hair and not being able to get it out if I try it on my neck...I'd have to be super careful.

Ankle cream ingredients

side note:  When I got my new ankle cream a couple of weeks ago it came in some very impressive  packaging.  There was a cold block in there (I guess in case it got too hot during shipment) and it was cushioned to the max.  Seriously, look at the big cushion that was in this thing.

The cushion was bigger than my 10 year old...

Also, I got 3 containers of it.  Does it get used that quickly that I need this much???  I guess we'll see.

Anyway, this has been the routine for about two weeks or so.  ConZip in the morning, Celebrex (anti-inflammatory) and Soma (to keep my back spasms at bay) at night...and cream on various body parts as needed.  It has helped keep the pain in check enough that I was able to take part in cleaning the house in anticipation of my family visiting, and I was able to enjoy the time with my brother when he was here last week.  Let's just hope this all continues to help and that I don't die of kidney or liver failure by the time I'm 50!

Bee Therapy?

As I was getting my weekly acupuncture treatment today, my acupuncturist, Tuan, told me about how he suffers from chronic pain in his shoulder due to several injuries to it in his younger years.  He said he had seen a few doctors, and three different doctors told him that he needed surgery on it to relieve the pain.  Even though I've been seeing him for 5 years or so, I've never known that he suffers from chronic pain because he has always seemed in good health.  Tuan told me that for many years now he has been doing bee therapy, also know as apitherapy, to help with the shoulder pain and that he only has to do it every six months or so to find relief.

Bee therapy is exactly what it sounds like...you get stung by honey bees.  Chinese medicine uses the bees to sting the patient on various acupuncture spots.  Tuan says that bee venom has been used since ancient times, going back to the Egyptians.  He uses it on himself, my other acupuncturist, and has had other patients that have found relief with this practice.  The bee venom causes the body's immune system to react strongly, which is what helps patients find relief.

Tuan told me that he just performed a treatment on my other acupuncturist, Thuc Dan, this past Saturday.  He treated her with only five stings, since she is much more sensitive and reacts more than he does.  Tuan says that since everyone's body reacts differently, people will have varying results and require treatments at different rates.  After speaking with Thuc Dan, she told me that after the treatments she feels like she has the flu for a couple of days, with the day after the treatment being the worst.  To feel a bit better, she took some anti-histamine, which helped to relieve some of the symptoms she was suffering from.

This isn't the first time Tuan has told me about bee therapy.  He mentioned it a few years ago when he told me about a patient of his that suffered from multiple sclerosis.  He had been treating her for years and she had found great relief with the treatments.

So, how crazy is this sounding to you?  If you are a regular, “normal” person, you probably think it sounds nuts.  And it sounds crazy to me too...but it also seems like something that I may be open to.  Suffering on a daily basis sucks, plain and simple.  If I could find something that would relieve my pain on a temporary basis...even if it sounds completely nutty...well, why not try it at least once?

Dear Readers...Have I lost it completely?  Or do you think this may have some substance?

Total Ankle Replacement 1 Year/6 Month Update – Good News And Bad News

Yesterday I made the trek into DC to see my surgeon for my 1 year (left ankle) and 6 month (right ankle) check up.  My original appointment wasn't for another month, but considering the pain I've been in, and the lack of progress, they wanted to see me earlier.

If you've been following along with my progress, then you know that I've plateaued in the past few months.  Since March, I haven't been able to do more than 10 minutes on the treadmill without being in a ton of pain.  Seems like 10-15 minutes on my feet is the absolute most I can do, and by then I'm hurting like a mofo.

 

 

The Good News

My ROM (range of motion) is great.  And looking at some newly taken x-rays, it seems like the implants are healing up nicely.  Everything concerning the ankle joint is perfect.  My surgeon was very happy with his work :)

I explained to my doc that I still can't be on my feet for more than 10 minutes without being in pain and asked why that would be.  And then came the bad news...

The Bad News (with a little Good News (sorta) sprinkled in)

The bones in my feet are shit!  Because of my condition (SED—aka: shitty bone disease) I have severe arthritis in my feet.  I'm looking at future surgery on fusing a few of these bones in order to help with the pain.  When I heard the word “fusion” I freaked out.  At first I thought he was talking about fusing my new cyborg ankles that I just busted my ass for a year to get to work right.  But he assured me that it's not my ankles he's talking about, but my feet.  Apparently ankles and feet are separate things...duh! :P  Doc says that fusing the bones in my feet won't affect my ROM because any ROM that I would have had in these bones is already gone.  I asked if my walking would be affected and he said that it would probably be better since I won't be in pain.

The circled pen marks are the spots where he'd do the fusions.

Now, he won't really get into the knitty gritty of the surgery just yet.  He wants to see me back in 6 months for my one year anniversary on ankle #2.  If I'm still having pain at time, then I'm thinking this foot-bone-fusing discussion will happen then.

So I'm looking at another surgery in the near future, but it should help with my pain...that's the sprinkle of good news just in case you missed it :)

What do I do now for my feet pain?

He's hoping that my new orthotics will help relieve some of my pain.  Since I've only had them a week, it's still too early to tell.  My husband asked how long it would take to see some improvement with the orthotics and Doc said for a “normal” person it usually takes about six weeks...but for me he thinks I'm looking at a couple of months.  Either way, this is a longer time frame than Ryan (the orthotics fitting dude) gave me.  Oh well.  Fingers crossed!  Anyone else have orthotics?  If they've helped, how long did it take for them to start helping?

Doc is also prescribing some compound pain cream to rub on my feet twice a day.  I have some pain cream that I use on my neck (to read about my neck problems click here) and this sounds like a similar cream.  The cream I have helps with my neck, so hopefully this new one will help with my feet.

I'm also supposed to start actually taking my Celebrex twice a day as it's prescribed.  On the bottle, it says to take one pill once in the morning and once at night.  Well, I try to take as little medicine as possible so I usually only take it at night.  I guess now I'll change it to twice a day and just suck it up!

Figuring it couldn't hurt to ask, I asked if cortisone injections would help at all with the foot pain.  Doc basically laughed out loud.  Apparently my bones are so shitty that they'd react to cortisone with a "bitch please!"  Oh joy!

At least I have some answers now as to why I haven't been getting any better.  It's always worse when you don't know what's wrong.  Don't you think?

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To read about my full ankle replacement journey, please click on the Total Ankle Replacement tab.  

I'm happy to answer any questions that you may have.  Please comment below, or email me privately at:  thecyborgmom@gmail.com

Going For A Road Trip

My stress level has been pretty high over the past few weeks...with dealing with my plateaued progress with my ankles, and some upcoming family events.  But this past weekend I noticed my anxiety getting markedly worse than it's been.  This upcoming weekend we are going out of town for my brother-in-law's wedding and I'm really dreading the whole trip.  Don't get me wrong, I love my BIL, and my future SIL, and I'm happy to attend their wedding, it's all the other stuff that's a problem for me and my medical state these days.

The only long trip I've made in the past year was when I went to visit my parents in Delaware back in November.  Visiting them is a 3 hour car trip each way, and although it took a lot out of me, there was nothing expected of me.  We didn't go anywhere...I could wear my sneakers...I could put my feet up when needed...and I knew that if I didn't feel well, I could always go and lay down and rest.  Bottom line...I didn't have to pretend to be happy and well if I really wasn't.

 Most people don't realize how much pretending, or putting on a happy face, goes on when you are a chronic pain sufferer.  Even the simple question of, “How are you?” is a difficult one to answer.  Are they just making conversation? “Okay, and how are you?”  Do they want the short version of the truth? “I've had better days, but things could always be worse.”  Do they want the whole truth? “I want to go home and load up on pain meds until I fall asleep and don't have to deal with the pain any longer.”  By the way...I usually go with the short version answer so I don't have to freak people out and make them feel uncomfortable.  Aren't I nice? :)

This weekend allows me a limited amount of options.  Not only is it a longer car ride, but I can't wear my sneakers, I can't put my feet up, I have to go about things on my own (without my husband's help since he's in the wedding party), and I can't just leave and lay down if the pain gets too much.  Not only will I be bringing all my pain meds along with me for this trip, but my Xanax for the stress of it too.  It's amazing how much more anxiety I get when I feel like I'm backed in a corner and have no plan B.

Say prayers for me my friends!  I have a feeling the anxiety is only going to get worse.  Hopefully the pain will be less than the anxiety, although I have a feeling it probably won't :(

Total Ankle Replacement: 24 Weeks Post-Op--Ankle #2

If anyone is following this blog because they are interested in my progress, and you are looking for some updated stats...look at last months stats and add five pounds to the knee machine and ten pounds to the leg press machine. That's all the progress that I've made in four weeks time :(

This week marks 24 weeks since I had my total ankle replacement on ankle #2. Ankle #1 is almost at the year mark (June 12). Last month I talked about how I don't feel anywhere near “normal”, and I'm starting to think that I'm never going to even come close to that at all. The past four weeks have been very depressing as I've realized that I've plateaued in my recovery for the last couple of months. Now, I've had plateaus happen before with other surgeries, but it's usually for just two weeks or so. Looking back at my progress in my March posts, I realize that although I've gained more strength in my legs, I haven't gained any endurance at all. At all. I can't stand on my feet longer than ten minutes without being in a terrible amount of pain. I'm starting to think that this isn't going to get any better.

Whenever I mention this to anyone, they remind me that I'm only about six months out and this can take a year to eighteen months to fully recover. But I'm almost at a year with my left ankle (#1)! And that is not any better than my right! They are in the same level of shitty pain!

Getting fed up.

I've had both hips and both knees replaced, so this replacement thing is not new to me (I told ya I was a cyborg!). I know that rehab is painful, but after it's done, the benefits can be life altering. My hips were so bad that after I had my replacement surgery I felt like I hit the jackpot. The replacement hips were new and improved and better than the originals (they took about 3 months to rehab). And although my knee replacements were a bitch to rehab...by far the worst pain I've ever encountered....the trade off was that I was pain free after all was said and done. The biggest downside to my knee replacements was that I lost a lot of range of motion (ROM). This is always a possibility, and I knew that going in for my ankle replacements. But I was willing to trade off ROM for no pain...no such luck. My ROM for my ankles is within normal range, but there is still so much pain whenever I stand or walk.

I'm not scheduled to see my surgeon until July. I think I may call just to ask if I should be worried, or if I need to be seen sooner. Can't hurt to ask, right? Only thing is...what if they tell me that this may be it for me? I've been so depressed over the past few weeks, that I don't know if I want to hear bad news right now.

Both the hips and knees, after rehab, gave me a (mostly) pain free existence in those joints (there's the occasional "I feel the rain coming"). I just assumed that I'd have a similar experience with my ankles. This is not the case, yet, and I'm starting to lose hope.

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To read about my full ankle replacement journey, please click on the Total Ankle Replacement tab.  

I'm happy to answer any questions that you may have.  Please comment below, or email me privately at:  thecyborgmom@gmail.com

Total Ankle Replacement: 20 Weeks Post-Op--Ankle #2

So this week is 20 weeks since I had my total ankle replacement on ankle #2.  I still don't feel “normal” in either of my ankles (ankle #1 is approximately 10 months post-op).  I realize that there's a very really possibility that I might not ever get to “normal”, but I've been pretty disappointed about my level of progress so far.  My husband keeps on reminding me that it hasn't been that long with either ankle and that I just need to be patient and give it more time.  But...patience is stupid.  Just getting frustrated here!

Physical Therapy/Medical Gym

Since last week, I've stopped going to physical therapy and have progressed to the medical gym.  What does this mean?  Not much.  Basically I do all the same exercises that I did while in pt, but I don't consult with my therapist anymore.  I'm lucky that my pt place allows patients to transition to a gym routine like this and I'll probably keep this up for another month or two?  Who knows.  I guess it depends on my level of progression and frustration factor.

I stopped using my aircast ankle brace a few weeks ago while at the gym.  I still wear it whenever I go out, but not at home.  Most of my exercises have remained the same, with the weights changing for some.

Hip machine...45lbs (same as last month)
Knee machine...25lbs (up from last month)
Total Gym...level 6 (same as last month)
Leg lifts...3lbs each leg (same as last month)
Leg Press machine (this is new)...60lbs
Pilates Reformer...
     Heel on bar squats w/ foot flexed... 1 red band (same as last month)
     Toes on bar squats w/ foot pointed... 1 red band (same as last month)
     One legged squats... 2 red, 1 green band (same as last month)

I stopped doing the rebounder every time.  Instead, I've been balancing daily at home...either barefooted, or with my Birki's on.  My balance has much improved!

Unfortunately, the treadmill hasn't progressed as much as I'd like.  I'm doing 10-12 minutes at 1.3mph.  Seems like whenever I'm on my feet for longer than 10 minutes, I start to really hurt.


Range of Motion
My range of motion is pretty much the same as it was last month.  I hope to do a video sometime in the next few days and will link it here.

'Round the House

Still walking with a bit of a limp, which is way more noticible the more tired I am or the more activity I have done.   I can load and unload the dishwasher, do the laundry, and vacuum (one room before I need to sit and rest).  I really try to schedule cleaning time so I don't overdue it and kill myself for the day.  I can cook a little bit...I sit on the counter if I have to be at the stove.  I cannot do a whole big meal, with lots of prep, and the cleanup afterwards.

Out and About

I'm still pretty sore on the days that I go to the gym in the morning and try not to schedule anything for the rest of the day.  But if push came to shove, I'd just slap my aircast on and maybe take a pain med if I really needed to do something super important. 

Like I mentioned above...I still can't really be on my feet longer than 10 minutes.  After that time, my feet start to massively hurt.  I did make a trip last week to Kohl's to get my son a new suit.  We went in, got some clothes to try on, and I sat down in the dressing room to rest while he tried on clothes.  All was going well (up to get clothes, sit down to rest) until I asked a sales lady to check the back for some stock.  We waited about 10 minutes (my breaking point), and then I had to wait another 5 minutes (at least) on the line to check out.  Holy hell...I was in so much pain by the time I got home.  I barely made it out to the car and could hardly walk the rest of the night.  But the next day I was okay, which is a huge improvement.  Before surgery, I wouldn't have been able to walk for days.  I did take a pain med when I got home, and it took the edge off, but I still could barely walk.

Immediate Goals

Over the next month my biggest goals are:  to go to the elementary school to have lunch with my son.  This was a goal for last month that I just haven't had time to do.  

I wonder just how far behind I am than the average person having this type of surgery...if there's anyone out there who can compare, please comment below!

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To read about my full ankle replacement journey, please click on the Total Ankle Replacement tab.  

I'm happy to answer any questions that you may have.  Please comment below, or email me privately at:  thecyborgmom@gmail.com

My Birthday

Today is my birthday!  I had some friends and family over yesterday to celebrate and had a really nice time, even if I ended the night very achy...it was worth it.  My husband did all the cooking and bought me a delicious chocolate cake, and flowers...grocery store kind, of course!  Even the little ones played well...we had a 3, 4, 5, and 6 year old, plus my kids.  At one point, all the kids were downstairs and not one of them came up to us crying...I call that a win!

Even though today is my actual birthday, there were a couple of reasons why we celebrated yesterday.  One reason is because I figured it would be easier for everyone to have a Sunday night dinner, rather than a Monday night celebration.  Another big factor was the weather...yes the weather.  Seems like every time there is a big change in weather my body gets very grumpy.  My arthritis flares up and I end up with aches and pains in all my joints.  And since my neck has been on the fritz (gee, I sound like a broken tv or something), that gets worse too.  The past few weeks have been so bad with weather ups and downs, that I thought it might be a good idea to check the weather ahead of time.  So last week when I was looking ahead, I thought Sunday would work better.  And I was right...today I feel worse than yesterday.  It probably doesn't help that it's also supposed to snow again tomorrow.  Even though they're not calling for a lot this time, my body is still affected.  Today is just another day of living with chronic pain...even if the day is my birthday.

On a creepier happier note...Google wished me a Happy Birthday...