Wednesday, November 30, 2016

The Good in a Very Difficult Season

This fall has been rough. Extremely rough. I thought seriously about not writing about it at all because I've not been able to do much of anything outside of doctor appointments and sitting on the couch watching tv in pain. Hubby encouraged me to still do it so I thought I'd give it a try. I did find some good in this very difficult season.

Fall Favorites

I'm a big fan of Instagram. I love seeing pictures my friends post, but I've also been following a whole bunch of chihuahuas I've never met before. Oddly enough, I've become attached to these sweet little dogs. I see their pictures and videos every day along with fun captions filled with clues about their personality. Over time, I've begun to feel like I know these dogs. One of them has stood out, Little boogie shoes. This little chi has a movement disorder along with all kinds of charisma and charm. I have loved getting to know this chi. If you are on Instagram I would encourage you to check him out.

Fall Successes

My big accomplishment this fall is continuing to endure. I've been fighting through some very dark moments as I've been unable to do the meager handful of things my chronic pain had previously allowed me to do. By no means have I conquered the fear, anxiety, and deep sadness I've been wrestling with, but I still have had moments of pleasure. I've laughed with hubby and enjoyed some good shows. I'm even enjoying our Christmas decorations now, which I wasn't for more than a week.

I'm enduring and I'm hopeful that, with time, I'll find a way to deal with all of this much better. For now, that is a big accomplishment.

Fall Failures

The cortisone injections were a giant failure. Not only did it not help, it actually made my feet worse. At least I won't have to do that again.

We also had a small snake in our garage in September. We had accidentally left the garage open, only to discover the snake when we stepped out to walk the dog later.

Fall Highlights

Well, we couldn't let fall pass us by without enjoying some firepits.

The other highlight of this fall was the time I spent with our chihuahua, Gypsy. As always, she has been a loyal little friend and companion through this difficult time. She does dozens of cute things every single day. It is such a pleasure to have her in our life.

Fall Lowlights

This one is easy. The pain in my hands and my feet.

Whimsy Wednesday

This dog is so excited to skateboard.

Have a great day everyone!

Tuesday, November 29, 2016

It Might Be Time For a New Migraine Rescue Medication

I've always had a love/hate relationship with my migraine rescue medication - sumatriptan. I started on Imitrex back when my migraines were turning chronic (11 years ago) and then switched to the generic when that became available a number of years ago.

I love it because it helps to provide some relief from the terrible migraine pain. I can't imagine not having a medication to help me treat the pain. I honestly don't know how I would cope without the assistance of this medication. Literally.

I hate it because of the side effects. The Imitrex always made me feel sick to my stomach. So much so that I still don't like taking any generic that comes in that same triangle shape that the Imitrex came in. The negative conditioning is that strong. The generics still leave me feeling queasy but to a lesser degree. But that's not the only side effect. There is often a weird feeling in my heart. It makes my breath terrible. Sometimes, a couple hours after taking it, my blood sugar will drop and my breasts get tender.

Slowly. over the past year, I've been feeling like the medication is not as effective as it used to be. More often than not I need to add 400mg of ibuprofen to my sumatriptan to get relief. That used to be a trick I used only to treat the worst migraines. Plus, it's becoming more common for the rescue meds to either not provide as much relief or wear off quicker than it used to.

I think it might be time to look for a new rescue med, which will be tricky because:
1. My migraine doc is in Minnesota and I'm in Missouri.
2. Right now what little bit of energy I have is being spent on dealing with the pain in my hands and feet.
3. Trying new medications for my hands and feet might impact a trial of new medications for my head.

I've decided to put it off until the spring or summer in hopes that I can get a better handle on my hands/feet and be on a stable medication regimen. I just hope the sumatriptan won't become completely useless before then.

Friday, November 25, 2016

Getting Back on the Medication Roller Coaster

Well, I've officially gotten back on the medication roller coaster. I officially got off the migraine prevention medication roller coaster back in 2013 because I couldn't take dealing with all the side effects and never seeing any benefit. Well my reasons were a bit more complex than that but you can read the link if you want more information. 

I'm getting back on now because of the pain I'm having in my hands and feet. So far we've ruled out any kind of autoimmune, inflammatory or arthritis causes. Everyone feels confident that I'm having nerve pain. The only question now is this nerve pain due to nerve damage (neuropathy), or is this a severe increase in my fibromyalgia pain. 

The medications used to treat both conditions are the same and all of them are ones that I've tried before either for migraine prevention or fibro pains. I've had bad reactions to some of them and the others were ineffective. 

Still, I don't mind trying all of them again because severe pain in the hands and feet is quite disabling and very difficult to cope with. Plus, it's possible it will go better now. Just because they didn't work for migraine prevention, doesn't mean it won't work for nerve pain. The ones I did take for my fibro pain I didn't stay on because the side effects outweighed any benefit I was getting. But the pain is so much worse and more relenting now. 

I'm hopeful that I won't have the awful side effects I had before and that one of these medications will step up and provide some relief. 

I'm thankful that my primary care doc got me started on one while I wait for my neurology appointment. 

Yesterday I stepped on the nerve pain medication roller coaster feeling cautious and hopeful as I took the most daunting of all the medications - gabapentin. Last time I took it (migraine prevention) it gave me terrible nerve pain. 

Wednesday, November 23, 2016

Adjusting Holidays Plans Because of Pain

Holiday gathers are tough for me. The lights are always too bright. The din of all the simultaneous conversations is always too loud. There are usually at least a couple women who wear perfume. Between getting ready, driving and then trying to engage in small talk with everyone, it's taxing and exhausting. In a nutshell - migraine triggers are everywhere.

It's always nice to see family but there is no getting around how tough it is.

With the addition of terrible hand and foot pain this year, the holidays are even more daunting. I'm not able to do much of anything right now because the pain has gotten so bad. Additionally, I'm struggling to cope with these new pains. More and more, this is looking like it will be something I'm dealing with for the rest of my life. I might be able to manage the pain but it will be management not cure. The few things I could still do now worsen my hand and foot pain.

I'm just not in a good place right now and the last thing I want to do is put on a show and make small talk. I can't make a dish to pass. I can't do my hair. I can't put on make-up. The only shoes I can wear are my sneakers with the special inserts and those don't look good when dressing nice. I don't eat meat. I just want to be at home with my hubby and my animals.

This year we are going to have to do things a little differently. We have opted out of the big family gathering tomorrow but attended a smaller immediate family thing over the weekend. We will take the same approach to Christmas celebrations. And I've decided to not attend a bridal shower for my cousin in a couple weeks.

I don't want to miss the holidays completely but I'm just not up for anything big. The only good news is that I don't feel the least bit bad about doing what I need to do to take care of myself during this tough time.

Thursday, November 17, 2016

A Last Attempt To Obtain Relief

Well, after trying absolutely everything else to relieve the pain in my feet, I went ahead and did the thing I was scared to do. I got cortisone injections in both feet. 

Seems silly for someone who lives with chronic pain to be afraid of getting painful injections. But people were describing these injections as mind blowing, take-my-breath-away pain and I couldn't imagine doing that to myself. So I tried everything else my podiatrist had to offer first and since I wasn't making much progress I finally decided it was time. All this pain is getting to me. It has been so long since I took a step or stood up without pain. I figured I could endure the painful injections if it meant I had a chance at relief.

So Tuesday morning I went in and had it done. It wasn't terrible. It hurt but it wasn't as bad as I had been hearing. Then again, my experience might have been a little better because it didn't go deep into a joint but rather she spread it along the metatarsal area. The injection also included lidocaine so by the time I left my feet were numb, which was weird. I went right home and put my feet up and have carefully followed the doctor's instructions to rest and ice my feet. 

I was told that the pain would be worse for the first 48 hours (and it has been) but then it would start to feel better. It has now been 46.5 hours and I'm starting to worry. The pain from the cortisone has begun to wane but I have not yet experienced the original pain going with it. 

I need this to work. Have any of you had cortisone shots? What was your experience?

Monday, November 14, 2016

Making Further Adjustments to Manage Pain

On top of my usual chronic migraines, fibromyalgia  and endometriosis, I've been dealing with bad foot pain since August and even more recently with pain in both hands. My usually low level of activity and function has been forced to go even lower. I struggle to cook and clean. I struggle to shower. Well everything has become a struggle because everything involves using my hands and/or feet.

I don't yet know if this is going to be an ongoing problem that I'll have to deal with for the rest of my life, but I DO know that I will need to make some changes to how I do things either to manage these terrible symptoms or, if I'm lucky enough find a "cure" for whatever is happening, to prevent them from becoming a problem again. 

To that end I've been thinking a lot about how I can cut down on some of the work my hands and feet currently do. I'm going to get an automatic can opener. I'm going to stop making my own laundry detergent because it is hard on my hands and my feet. I'm going to have my husband help me put up and take down our holiday decorations. My mom sent me a pair of gloves with cushions to help pad my naturally bony hand. I'm going to type out labels instead of hand addressing my Christmas cards. You get the idea.

Additionally, I've been seriously considering giving up dairy. I tried going vegan about 7 years ago but after 3 months without dairy I started losing weight, which was a very bad thing. Normally, I wouldn't think of doing this again but I'm in a better place now with my weight and I think I might be able to do it without losing this time around. The benefit I seek is to reduce inflammation in my body. I don't know yet know what is wrong with my hands, but the problem with my foot is inflammation and this is not the only example of inflammatory problems in my body. 

I'm open to ideas if you have any.

Thursday, November 10, 2016

Some Post Election Thoughts

Well, I'm still in shock. All of my fears surrounding this election have come true. Nobody I voted for won - not at the local level, not at the state level and not at the national level. Additionally none of the state and local propositions and amendments went my way. That means Missouri will now have voter ID laws, which will make it much harder for any progressive thought or person to have a voice. 

We have elected some pretty disturbing characters to "represent" us. 

Most shocking of all, obviously, is the fact that Trump has won the presidency. I'm deeply disappointed in our nation. Trump might be an outsider and he certainly is going to shake things up but nothing he has presented indicates it will be for the better. The level of hatred and lack of maturity he has displayed over the years and during this campaign are frightening. 

As someone living with chronic conditions I watch as other states are able to adopt recreational use of marijuana while Missouri can't even agree to put extremely limited medical use up for a vote and I feel frustrated.I watch as the republicans talk about repealing the Affordable Care Act and I'm filled with fear about what that will mean for me and millions of others. 

I'm saddened by the big steps our country is taking away from equality, inclusiveness, unity and progress. 

I'm sad. I'm angry. I'm frustrated. I'm disappointed. I'm disgusted. I'm worried. I'm confused. I'm shocked. 

Tuesday, November 8, 2016

One Migraineurs Thoughts on this Election Day

Hubby and I got up a little early this morning and went right to our designated polling location. We stood in line for about 40 minutes, despite arriving about 5 minutes before it opened, before we were finally able to cast our votes. Immediately after I felt a wave of relief wash over me. I'm so glad to have gotten that over with. I'm even more glad that all campaign advertisements and election coverage will come to an end after today. 

Tonight, as polls begin to close and results begin to trickle in, my nerves will no doubt ramp up. The possibility of a Trump presidency is frightening to me for many reasons. One of those reasons is because he wants to completely repeal the Affordable Care Act (ACA) and replace it with Health Savings Accounts. Obviously the ACA has plenty of problems that need to be fixed but, as someone who isn't lucky enough to be completely healthy, I understand the importance of the protections offered by the ACA. Protections like, not charging women more than men, eliminating lifetime limits and not allowing providers to deny coverage for people with preexisting conditions. No HSA is going to protect us from these sorts of discriminatory practices. 

Earlier this year, I wrote about how glad I am to live in a state that holds primary elections instead of a caucus. The idea is that for someone living with chronic pain (along with many other populations) a caucus is exclusionary and I happen to think that's wrong. To that same end, I wish all states would offer early voting any time there is a presidential election. Voting has hardly begun and already the news and social media is full of the images and stories of long lines. Heck, the man in line behind us this morning had to leave before he could vote. Who knows if he will come back and vote later.

Thankfully, it wasn't terribly cold this morning so waiting outside in line wasn't too bad. But what was bad was being on my feet on the concrete for 50 minutes, the bright lights in the school where we vote and the fact that I woke up with a mild migraine. By the time I was done, my head felt worse and my feet were quite sore. It would have been much worse if I had to stand in line after the sun came up, or if it had been colder, or if that line had been any longer (as I see many other lines are), or if my head was in worse shape. 

The unpredictable nature of living with chronic migraines, fibromyalgia and endometriosis coupled with the large turn out we see during presidential elections makes voting a challenge. I suppose I could attempt to get an absentee ballot during these elections but I am resistant to that idea because it seems like those votes only get counted if the margins are just so. The idea of that bothers me so I prefer to cast a vote, which is why I wish we had early voting. 

Early voting is great. Plenty of people besides those of us with unpredictable chronic health problems would love to vote early just as a convenience. Plus it would cut down on the crowds on election day. Even though Missouri doesn't currently participate in early voting, it does seem like the country is trending in that direction. I'm hopeful that one day soon, it will be an option for me.