Feeling a bit better

I'm not feeling much better physically, but I'm in a better mood after all the swimming I've done recently.  Even if it's not helping my body, swimming is sure helping my mind.

I got a new cane!  My parents bought it for me and it's beautiful.  It's made of wood so you can see the grain and it's finished in a yellow and green finish.  It's gorgeous.  It's also lighter weight than my other cane.  My dad cut it to size for me and it fits perfectly, which is something I couldn't get out of my previous cane.  I still can't wait to ditch it, but It's nice to have such a beautiful cane.

My pain levels are still really high.  I'm glad I have swimming to help me mentally.  My mom and I joined a new gym.  We are dedicated to 2 days a week together, barring unforeseen circumstances.  I'm trying to go at least once more a week.  I like this gym because although it is not open 24 hours a day the hours are really good and the pool is open almost all day and late enough into the night for me.

My next pain doctor appointment is in about a month.  I'm hoping there's more that can be done.

There is hope!

I met with the NP at my new pain doctor's office this week.  I loved her.  She was amazing.  I'm always nervous meeting with new doctors.  Ever since I met the one whose first words to me were "I don't believe in CRPS.  I think it's just an excuse lazy people use to not have to do anything," I have been nervous about a repeat experience.  Years of dealing with this condition has taught me it most certainly is real.

The new NP told me they treat a lot of patients with CRPS.  She asked me to take off my shoes and socks so she could examine my legs and immediately after doing so she said "Well, I can guess which one is the problem."  She *carefully* examined me, asked a bunch of questions, and reviewed the document I brought along explaining previous treatments.  She then said "I have a bunch of ideas just off the top of my head."

She suggested a few things: 1) a high frequency SCS.  She says this has been found to be more effective in treating CRPS pain and does so without the paresthesia. 2) an increase in some of my medications, but she says medications can only go so far. 3) A Buprenorphine patch, which I admit I was not immediately in favor of.  She said there are also other options.

Next week I will go back and have my stimulator reprogrammed to a higher frequency.  She said the results of this could help indicate whether or not a high frequency SCS might be better for me.  She also increased my medications and suggested melatonin to help me sleep.  I took the melatonin last night, and so far no dice.  I really think my lack of sleep is linked more to pain than much else.  I never had insomnia until I got CRPS.

Last week I was worried I'd never find a way to decrease my pain.  Today I'm feeling much more hopeful.  We haven't run out of options.  That's all that matters.  For now I'm still in a lot of pain.  we've had some crazy weather and temperature swings this week.  My husband is making me sit on the couch and not do anything.  I found a good one :)

Mind and body

It's interesting how your physical well-being can be so affected by your mental well-being.  From my previous posts you likely know I've been in more pain since last winter than I had been for years since getting my SCS.  In October it got so much worse than I had ever imagined it could be.  That's when I lost someone I was very close to.  My big brother died.    This is when I truly learned how much my mental health affects my physical health.  I haven't been able to walk since.

That was the worst phone call I've ever received.  My nightmare had come true.  My husband and I raced over to be with my family and in my haste to be near them I managed to twist my ankle slightly.  And so the nightmare got even worse.  I've lost my brother and I'm in unimaginable pain.  Since that day my pain levels have been so high I've barely been able to sleep.  I've been doing my best to keep my head up.  He wouldn't have wanted me to be down forever.  In fact, as I sit here crying for him I think of how mad he'd be at me for crying.  He'd just want to put a smile on my face, give me a gentle hug, rub the side of my face, and tell me everything would be okay.  I can almost feel him doing it now.  But how will anything ever be okay again?  I tried getting back into my routine, but even now, months later, the pain is so incredible I can barely function.

In the meantime, my pain doctor closed down.  No notification, no help finding a new doctor, nothing.  After repeated attempts I went to my PCP to see if he'd increase the dosage of one of my meds until I could get a hole of my doctor.  That's when I found out my doctor had just up and closed down.  Thankfully my PCP is very understanding and helped me find a new pain doctor ASAP.  I see him at the end of next week. It was the earliest I could get in.  In the meantime I'm putting one foot ahead of the other, so to speak, and just trying to keep going.

I have found a song that I listen to every morning to try and help keep me positive.  It's Fun. Carry On.  There's a part of this song "My head is on fire, but my legs are fine.  After all they are mine..."  I'm trying to keep that in mind.  My leg may be a huge issue for me right now, and I may feel like it is really holding me back, but after all, it is mine.  Therefore it must be fine.  My head, on the other hand, most certainly is on fire.  I just have to keep going.

Due to all of this, I have swam exactly twice since he died.  I just can't bring myself to do it, and the normal pool is not comfortable because of how cold it is.  Today my mom and I went to a new gym and tried out their pool.  It is smaller, but it was warm.  We liked it.  I'm checking out one more pool tomorrow and we will decide which we like better.  Then hopefully I'll be able to get back into swimming, and that will help me cope.  Swimming has always helped me deal with problems.  Maybe once my head is straight again the pain will go down?  Maybe?  I'm still holding out hope the new doctor will have ideas for me as well.

For the first time in a long time, I have little positivity to add to my post.  For that I apologize.

Volunteering

So, as you have no doubt become aware, I do my best to not let my CRPS get me down.  Sometimes that leads me to making not so great decisions.  Case in point: this weekend.

My husband is friends with someone that was involved in a large event this weekend.  He told her that we'd be willing to help her out if she needed us.  She asked if we would serve beer.  We agreed.  I said I could help out Saturday and Sunday because I had to work on Friday.  It turned out they needed me Friday so I took a personal day and went to help out.  We thought it was only going to be for a few hours but as it turned out we were there fairly late.  Not too many people were there on Friday so I was able to sit down occasionally when my leg started to really hurt.

On Saturday we thought we were going to be closing a bit early but when we got there we found out we were going 2-3 hours past when we thought we would be.  We worked all day and into the night on Saturday.  It was very busy (good for the people benefiting from the event.) On Sunday I could take no more and my husband was having some trouble with his back so we bowed out.  I spent all day on the couch.  He wouldn't let me get up for anything.

This morning, still in intense pain but off to work I went.  Now I'm home and looking to relax the rest of the night.... unless my friend calls me about swimming.  My pain is still through the roof.  Once again I'm left wondering how much worse I'd be feeling if it wasn't for the medications the doctor put me back on.  I'm beginning to get a bit worried about what might happen when I wean off them in a month or so.

So all of that to say I overdid it because I was being dumb and I'm paying for it now.  Maybe next time someone asks me to help them out I'll remember this and be more careful, but lets be honest... it's not likely.

Now off to kick back, put my leg up, and watch some crappy TV.

Back on the meds

Well, it's been a while.  I know some still read this blog and for that I am grateful.  When I realize so much time has passed since my last post I'm left wondering if it's even worth keeping up with.  Seeing that people are still reading gives me encouragement.

We had a long, cold, awful winter here.  It was so bad I spent most of it using my cane.  Oh how I hate that contraption.  My doctor has told me before there is nothing else they could do for me so I admit to being terrified when I called him a few months ago to see if there was anything he could do.  I'm back on some medications :(  They have been helping, though, so they are probably worth it.

My sleep has been suffering from the meds.  They make me drowsy and keep me awake all at the same time.  How is that even possible?  But again, I keep reminding myself they are helping.  I'm walking without the cane again, and am doing pretty well at hiding my pain from the world again.  I wean off them soon but the doctor has assured me that I can stay on them long term if I need to.  I suppose I'll see how I feel when I start weaning.

For all the cold we dealt with this winter we've had some crazy weather this spring.... I suppose you could say Spring and Summer now.  It's been a mixture of unseasonably hot, unseasonably cold, and stormy here.  None of this does much to help with the pain, which is really why I'm even considering staying on the medications.

All of that having been said, life goes on.  My husband and I have been getting a lot of work done around the house lately.  We had some problems because of the weird winter, so we're dealing with all of those.  My house is soon to become a construction zone.  I'm not looking forward to it,. but hopefully this past winter will finally be put behind us soon.

Although I have been swimming a lot this past week, it has done nothing for my pain.  If anything it has made it worse.  I will not let that deter me, however.  I plan to keep swimming and keep hoping that it will help.

Long time no post. We bought a house!

I realize it has been over 2 years since my last post.  I'm sorry for not updating sooner.  Life got crazy for a while in there.  About a year and a half ago my husband and I ran into some very stressful housing issues.  We had to move out on fairly short notice and decided we were done renting.  Instead we started house hunting!

My father in law was kind enough to let us stay with him while we searched.  It took us about 2 months to find a house we loved that was also within our budget and put in an offer that night.  The sellers accepted and we were off!  We thought that would be the end of the stress, but boy were we wrong.  It was really just the beginning.

While we were getting our approval from the bank for our loan the government shut down!  They couldn't process any of our paperwork.  It was a complete nightmare.  Eventually the government re-opened, we signed our closing papers and the second move in just a few months began.  Only this time, instead of putting all our stuff into storage we were moving it into our house!

So we bought a house, and it's wonderful, but I had no idea it would be so much work.  We got a ton of snow just a few months after we moved in here.  Shoveling heavy snow is hard work, let me tell you.  My husband was not pleased with me for even trying.  In fact, I've been banned from doing so this year.  So the upkeep here can be a bit of work sometimes but I am so glad we did this.  It's been well worth it.

Unfortunately, with increased work, comes increased pain.  I'm still doing much better than I was before I got my stimulator.  I still am thankful every day I chose to have it implanted, but I admit the pain levels have gone up a bit since we moved in here.  I had to use my cane for about 3 weeks recently (Oh!  That's another new thing!  I had to buy a cane earlier this year to help me get around when my CRPS starts flaring really badly.  I hate using it but thankfully I haven't had to use it much.  I really feel for those of you out there that need that or more on a regular or constant basis).

And that's a brief overview of what's been going on in my life.

Chillingly hot

I said in my last post it seemed summer might be coming to an end.  Well lately it seems like it.  It's been cold here at night and hot during the day.  This week we were in the 50s (F) every night but today, for example, it was in the mid 90s during the day.

These dynamic temperatures make it hard to determine how to dress in the morning.  Do I dress for the 50 degrees outside when I leave the house, or the 90 degree when I leave work?  It's nearly impossible to decide.  I usually opt for dressing to the heat and wrapping a blanket around my ankle when I'm in the office.

On top of the weather there's been a bit of stress in my life the lat few days.  Swimming last night helped me release some of the stress, but my ankle is still bothering me a bit.  I'm trying to relax right now (I'm sitting back with a glass of Pinot Noir and watching my favorite movie- The Princess Bride).  Hopefully after a good night's rest my ankle will be more cooperative.