Monday, October 26, 2015

Work and Chronic Illness

I posted a status update on my personal Facebook page this morning and I realized later on in the morning that I might gain some insight by posting it here as well.

I've been wanting to do some blog posts about work and chronic illness and I've wanted to write a little about my new job, so I guess this is as good a place to start as any.

As I've mentioned previously, I am in the homestretch of a very challenging and difficult month schedule wise. I am really hoping, that things will settle down a little for me once we go into November. I am definitely not getting the recovery time I physically need right now.

That got me to thinking this morning. I typically work two days a week for a total of fourteen hours. I also sometimes work a third day at my substitute school nurse job although lately that is rare. I am working three days this week. I honestly don't understand how people with chronic illnesses like Sjogren's (or any other illness) work full-time. I say that because all along that has been my ultimate goal: to get back to a full-time nursing job. I started with subbing, now I work part-time, and I was hoping full-time would be doable within the next year or so.

As of today, October 26, 2015, the full-time gig will not be happening.
No way.

Now I know I can't see into the future but honestly, the part-time stuff is physically kicking my butt. I know the fact that I had to come off the low-dose naltrexone, which helps treat my Sjogren's syndrome, isn't helping at all, but the kind of pain levels and fatigue I have experienced since starting the new job is off the chart. Just for two days a week! Plus, all the other stuff.

That is why I am curious to see how things are going to play out as we head into winter. Right now, I am finding it incredibly difficult to manage the ridiculous amount of medical appointments I have with working regularly. Not to mention the daily care that is required for my eyes, mouth, and other symptoms. I'm still trying to figure out how to fit in healthy cooking and exercise because right now, both have gone to the wayside. So, I am reaching out to my readers.

While I think that I am an organized person, I will reaching out and looking for suggestions on how to manage a chronic illness with going back to work. Please feel free to add your suggestion(s) in the comments section below.

Monday, October 19, 2015

Low Dose Naltrexone

This is not going to be a lengthy entry. It's one I wasn't even planning on writing, but I wanted to share something with you all. I get e-mails from time to time from readers asking about how things are going for me with using low-dose naltrexone (LDN). My LDN posts also typically get the most hits.

I think LDN is one of those tricky treatment options where you don't know exactly how much it is helping until you aren't taking it. It is also tricky in regards to managing the side effect related insomnia that comes with it.

Well, it took me the better part of two years or so, but I was able to get around the sleep issue just by titrating my dose up slowly over the course of about eight months.

Then I came off it.

And it's been hell.
Friggin' nightmare actually.

Long story short, I had to stop taking it because I need gallbladder surgery. Because I started a new job the exact same week I was told this, I am putting the surgery off. They wanted me to have it in early September and it's scheduled for Thanksgiving week. You have to be off LDN for 1-2 weeks before surgery and/or taking narcotic pain medications. My surgeon was concerned that if I urgently needed to get my gallbladder out sooner than November, he wouldn't be able to do the surgery if I was on LDN. 

So I have been off it for about six weeks now and all I can say is...

I miss it.
Like, really bad.

I thought because I was still having pain while on it, it wasn't working well. Not true because now, my pain levels are on a much worse level, like pre-diagnosis level. There are several other factors affecting my pain levels, but stopping the LDN was a huge contributing factor. I am trying some other pain control alternatives to get me through.

If you don't know about LDN or are skeptical, please check it out. There are a ton of resources online. I have written several other blog entries about it and you can access those by going to the right side column of my blog and clicking the label for LDN or low-dose naltrexone. It is not a miracle cure for Sjögren's, but it is definitely a vital component to my treatment plan.

And relatively speaking, it's cheap.
And safe (just don't take narcotics at the same time).
And completely underutilized because well, the health care industry cannot make a fortune off of it so they blow it off as a snake oil remedy.

Go check it out.

Sunday, October 18, 2015

Grounding My Soul

My life has been caught up in a whirlwind of busyness lately, probably the most I have seen in years. When the month of October descended on me, much quicker than I planned by the way, I realized that I have something going on every single weekday for the entire month, with the exception of one solitary Monday. I would like to point out that I NEVER let that happen, if for no other reason than I physically cannot handle it.

I looked at my October schedule, staring at me as if to taunt me and say "there's no way you can do this" and I made an honest attempt to cut some scheduled things out of it. Except for one problem...

I couldn't.

Those weekdays are packed with either work, a ridiculous amount of medical appointments, school nurse licensing classes, and one charity event that I just cannot miss. On many days, I am double booked and know that I am going to miss some things that I really wanted to attend, like my husband's yearly client event at work. With one exception, we are trying to make the weekends a time of true rest.

So I knew all this going into October. My husband and I talked about how we were going to get through it. Because when you have a spouse who is trying to get through a month like this, and said spouse has a chronic illness, it's not a one-person show. For example last week, I literally would spend the day at work, traveling to classes, and/or appointments and collapse into bed the second I walked through the door. My husband took care of the dog, made sure I ate, made sure we had food in the house to eat, made sure we had clean clothes, and a million other details that allowed me to be in bed whenever I was home. It honestly saved my sanity. And probably saved me an E.R. visit as well.

Our goal is for me to get to the month of November, pure and simple. I know I am pushing way beyond what is tolerable for me. But that's what happens when you start a new job at the same time a bunch of unexpected chronic illness complications come your way. And your elderly dog starts having  even more issues than she already had. So, it's one day, one hour, at a time for now. And God handles the rest. At least, I hope so,

People around me think I'm busy all the time, but up until this past September, that typically is not the case. At least not as much as people think. My husband and I do a lot together on weekends when I am able, but I typically get a lot of alone time during the week. That has not been true lately and I realized that between being on the go a lot and not connecting with friends as often lately, I have been out of sorts. I am one of those people who does not do constant stimulation well and after a while, that comes through in the way I respond to the world around me. I need a certain amount of reflection time. Or peace time. Or writing time. Anything that grounds me and bring me back to equilibrium.

After surviving last week, I know I am in for another two weeks of this craziness. I also know that it is time-limited. However yesterday I realized that I have to change some things around so that I have quality quiet/soul nurturing time. Time where there is no TV on, no Facebook newsfeed lighting up my computer screen, no feeling the need to respond to every single e-mail I receive. My quiet time doesn't necessarily have to be quiet time at all. It just has to be time where my spirit can rest and I can feel some peace with the world, with myself, and with what I am trying to accomplish.

Going into October, I made a commitment to myself that I would not do anything on the weekends because otherwise, what other time would I have to try and calm my physical symptoms down? I thought of that as I woke up this morning and my husband was up getting ready for church. My body was telling me to stay in bed, but my spirit suspected that it needed to get up and go to church. It knew that it needed to be amongst friends. I also knew that some of my faith has been in a little trouble lately (the whole having an illness and being angry at God thing) and that a morning at church could help that.

And it did, even more so than I suspected it would. I don't know what other people's experiences in church are like, but for me, there is oftentimes this feeling I get when I walk in the front door that I am home, which ironically was the theme for our sermon this morning. It is a place for me to be with people who accept me as I am, who love me as I am. It's a community where I have to opportunity to give so much love back. This morning, it was also a place for me to get grounded again; a rare opportunity to be still and quiet in a supportive environment with other people. It's a place where when my faith is shaken, as it has been, I can see God in the goodness of the people that surround me.

And my soul becomes stronger again.
At least for today.

Tuesday, October 13, 2015

Plantar Fasciitis and Extracorporeal Pulse Activation Technology: Part One

I first noticed the pain around May of 2014. I had been running/walking for about six months. Running/walking was new to me and I had fallen heads over heels in love with it. Well, maybe not with the running itself, but more the high I got when I ran. And when I completed a race. I figured that the pain I had in my heels was from overuse so I cut back on my mileage.

I also have a chronic illness called Sjögren's syndrome that can cause inflammation and issues with joints, tendons, and muscles. I had recently weaned off prednisone for the first time in a very long time and I thought my body just needed to adjust to functioning without it. But by July 2014, I was having major difficulties with being on my feet.

I saw a podiatrist in August and was diagnosed with bilateral plantar fasciitis with my right foot pain being worse than my left. I started with conservative treatments such as stretching and ice. If you have ever had plantar fasciitis (PF), you know that it can be a relentless, often debilitating pain that can affect all aspects of your life from work to travel to even basic personal care. By this point I had stopped running/walking all together and was lucky if I could ride a stationary bike for ten minutes without being in agony.

My podiatrist and I went through treatment after treatment: two round of physical therapy that lasted more months than I can remember; exercises, night splints, NSAIDs; alternative therapies, acupuncture, and multiple cortisone injections into both feet.

After a year and a half of all this, I had pretty much given up all hope of ever being able walk without pain again. Then at a follow-up appointment, my podiatrist presented me with three more treatment options: invasive surgery, a minor surgical procedure called TOPAZ, and an office procedure called extracorporeal pulse activation technology, or EPAT for short.

I was starting a new job and going back to work on a regular basis for the first time since 2008, so time off for invasive surgery was out of the question. I researched the other two options and while I thought the minor surgical procedure seemed like possibly the best option long-term, I did not want to risk needing time off from work if I didn't recover quickly. I was also looking at gallbladder surgery in the very near future and two surgeries in a matter of a few months did not seem like the best option for me.

So after much discussion with my husband, I elected to go with the EPAT treatments. The treatments did not require time off from work to recover, but they also are not covered by medical insurance and the average cost for the three treatments is $500.

I decided to write about my EPAT experience because I didn't know much about it going into it in terms of what to expect during the treatments or afterwards. I did my research online, and while there was plenty of technical information available, there wasn't much information in regards to actual patient experiences. The one patient experience I did read online was a horror story about how incredibly painful the procedure was, in detail. It scared me enough that I asked my husband to go to my first treatment with me!

EPAT is a non-invasive technology, invented by a company called CuraMedix, that uses pressure waves to stimulate the patient's metabolism, enhance blood circulation, and accelerate the healing process. The damaged tissue regenerates and gradually heals. Basically, using the body to heal itself which for me, was an attractive option. It treats many acute and chronic musculoskeletal conditions throughout the body and can be used in areas such as the feet, shoulders,neck, back, and other upper and lower extremities. Over 80% of patients treated report to be pain-free and/or have significant pain reduction. The procedure has virtually no side effects.

From what I read online, there are different ways to use EPAT. The doctor who did mine scheduled me for three treatments for three consecutive weeks. I also found out that because I have no office co-pay and my deductible for the year had already been met, the cost of the treatments was only going to be $50 for each office visit for a total of $150. That was definitely good news and quite a relief!

My first treatment was last week. My doctor doesn't do the treatments and so another doctor and a CuraMedix representative, along with my husband, were in the procedure room with me. The rep was there because this was the first week my doctor's office was doing the treatments, preceded by some patient trials.

I did not receive any local anesthetic. The treatment is done by using a large wand that looks similar to one they use for ultrasounds. After the doctor locates the most sensitive spots on your heel,a gel is applied and the treatment begins. She started off at the lowest setting and it feels like a very deep tissue massage. She gradually increases the setting to increase the pressure waves. The way she explained it to me was that the higher of a setting I could tolerate, the better. It would increase my chances of the therapy curing my PF.

I cannot lie. Once she started increasing the intensity, it hurt. It's not the actual device itself that hurts, but it's the pressure on the already damaged tissue that hurts. Once I got to a level where I felt like I couldn't tolerate it any higher, she left it at that setting. The entire procedure lasts about ten minutes. I have had a lot of painful procedure and I have to say, yes, it's uncomfortable, but it was nowhere near as bad as I had anticipated and I think that most people would find it very tolerable.

When I walked out of the office, I had no pain in my right heel for the first time in a year and a half and that was awesome! I was forewarned that in 24-28 hours, the pain could increase because the area would be inflammed. That is actually a good thing because it's part of the process of the tissue healing itself. And 48 hours is right when the pain came back for me. I had the procedure on a Tuesday and the pain intensified significantly from Thursday through Sunday. By Monday, it was less than my pre-procedure pain. Then I went back for treatment number two the next day, on Tuesday morning.

That was this morning. I found today's procedure more tolerable and the doctor explained to me that I should start to see more improvement as the week goes on.

The one major drawback for me, that I didn't know about until they were about to start my first treatment last week, is that while you are having this done, and for a while in the weeks that follow, you should not take NSAIDs or any other antiinflammatory medication while you are undergoing treatments. This is because the treatments are designed to initially cause inflammation and taking these kinds of medications could cause the treatments to not work as well.For me, this has been an issue because I have recently been having more autoimmune related pain issues and I had to stop taking Motrin for my pain. It also meant that I couldn't ask my doctor for a short course of steroids. Actually, I shouldn't say couldn't. I could, but I felt that it wasn't worth the risk of going through all this and then take the chance of the treatments not working optimally for me.

So that has been my EPAT experience so far. My plan is to do a follow-up blog post a few weeks after my treatments end to update you on my progress. I am hopeful though that this may be the answer to all my plantar fasciitis woes. Stay tuned!

Monday, October 5, 2015

"What I Have Learned as a Rape Survivor"

I have a new blog post ready to go up and two more turning over and over in my mind, waiting for me to furiously type them out.

All three of them are going to wait.
I came across something this morning online that I would like to share with all of you.

Two years ago this week, two young women I know were raped. Two women who have never met, both between the ages of 18-23 at the time of the incidents. Both live in separate parts of the country. Their only connection is that in the thread of social connections we all have, I know both of them.

The details of their ordeals are not for me to know and/or discuss.But here's what I can tell you:

1. 1 out of every 6 women has been the victim of an attempted or completed rape in her lifetime.
2. In 2003, 9 out of 10 rape victims were women.
3. 80% of victims are under the age of 30.
4. 44% are under 18.
5. 29% are age 12-17.

This makes me stop and pause. I have not been the victim of a sexual assault. But how many people do I know have been?

I can think of 10 just off the top of my head. And that's only people I know personally. It doesn't count all the children and adults I have cared for as a professional nurse. That number is off the charts. It also doesn't include the people in my life who have been victims and I don't know about.

More stats:

1. Approximately 4 out of 5 assaults are committed by someone known to the victim.
2. 47% of rapists are a friend or acquaintance.

Rape is not just a stranger attacking you in a dark alley type of violent crime. It is happening everywhere: in our own homes, in college dorms, in the back seats of cars, in bars, at college parties,in churches,  Women and girls (and men/boys) are being raped by not only strangers, but by their husbands, their fathers, their brothers, boyfriends, girlfriends, uncles, and priests.A woman is raped the moment she says "no" or does not give her consent.

**Statistics taken from the Rape, Abuse, and Incest National Network**

Those are the statistics, but my real reason for writing this today is to share, with her permission, a blog post written by one of the survivors I mentioned above. A woman who has taken the worst moments of her life and transformed them into an essay depicting courage, strength, and hope. The essay speaks for itself. It's only by bringing our hurt and pain from out of the shadows that we can then be a beacon for others who feel so alone. You can find Callie's post by clicking on the link for her blog here:

What I Have Learned as a Rape Survivor

Tuesday, September 15, 2015

Soul Nurturing

I'm having a soul nurturing day today. What is that you ask? Something I made up at 8am this morning when I realized that I needed some good self care today. In the past I have called them rest days. Rest days for me are days in which I promise myself that I will stay home and read or watch TV/movies. No work, housework,exercise, etc. Rest days are what enable me to get through my life living with Sjögren's.

However soul nurturing days are rest days in which I also do a few things that feed my soul. Things that I haven't been doing lately or not doing enough of. Coloring, reading, sitting outside, etc. are some examples of things that nurture my soul. For today, I decided that my priority would be that no matter how I felt physically, I would write something. Anything. It doesn't have to be good or even make sense. I just have to do it.

I miss writing. Many people have asked me if I will ever write another book about Sjögren's, or another book at all. I don't foresee that happening right now, and while I don't think I will write another book about Sjögren's, I may do something different. Who knows. What I do know is that I miss writing, especially for this blog. Going back to work on a regular basis has definitely shifted a lot of things for me, but I have to make more of an effort to get some words down on paper, or computer. Life isn't the same unless I do.

I started my soul nurturing day today by looking at my 14 year old dog, Molly, who looked all eager and happy that I was home today. It's finally cool enough to have the air conditioner off and at 8am this morning, I realized it was a beautiful morning. Typically it is my husband that walks her on the weekends, but I was overcome this morning by the feeling that it would be good for Molly and I to venture outside. I made a silent promise to myself in my head that it would be a short walk and I wouldn't overdo it; especially since I worked yesterday and still have two more days of work to get through this week.

Molly does this thing with my husband on weekend mornings. She KNOWS by his routine that he is not going to work and that she may be going outside for a walk. When my husband goes to his dresser and starts rummaging through for clothes to put on, she starts spinning herself in circles and barks. It's quite cute actually. Then when he goes to put his sneakers on, she really starts to lose it and starts running around the house. This is the same dog that oftentimes struggles to get up from a lying position because of her age and arthritis.

So this morning, I did the same routine my husband does on the weekend and sure enough, Molly started flipping out with excitement. We headed off to the rail trail and the weather was as beautiful as I expected it to be. The rail trail we go to has a lot of wildlife and vegetation and can be a very peaceful place on a weekday morning. Molly set off at her usual pace and honestly, I was struggling to keep up. It's amazing how well she can do when she is excited about her walks. Similar to how I am with my autoimmune symptoms when I am excited about something. I get a little temporary relief.

The air was crisp and cool. I watched Molly explore the various scents on the trail and my soul sang a little. I got to thinking about how it's been her and me for so long now; keeping each other company on days when the rest of the world is at work or raising children. I've been thinking about that a lot lately as she continues to show signs of aging: more grey hair, her recent loss of hearing and as of last week, urinary incontinence. I know her days are numbered and I have to say, I certainly appreciate the time I spend with her nowadays; even more so than I used to. There is something special about ushering a dog into their later years. The bond deepens. Or maybe it's just that I appreciate the bond even more.

I think that soul nurturing is something that we don't take enough time for in our fast-paced and hectic lives. We are so busy doing and going from one place to the next, that we don't often stop to think about what it is that feeds our soul or nourishes our spirit. For me, feeding or nourishing my soul often involves quiet or solitary activities, especially because I can also physically rest at the same time. But that is not always the case for me or for others. A perfect example is this Saturday. I am signed up to spend quite a bit of time on Saturday working a taco salad stand at my church for our town fair. It's something my husband and I commit to every year. It's also the only commitment I made during the month of September besides work and medical appointments because I am giving myself time to adjust to being back at work on a regular basis.

Working the taco salad stand is probably not in my best interest physically, but it certainly is a big soul nourishing activity for me. Besides volunteering where I am much needed, it gives me a chance to spend time with my community and friends in a place that has become a second home for me. To me, a soul nurturing activity is anything that reminds me of my purpose in this world and/or calms my spirit. Sometimes it is something that feeds other people's souls.

I almost always wrap up the end of my blog entries in a neat little package, but not today. My goal was to write and nurture my soul and that is what I have done. Hopefully, you also get to do a little soul nurturing this week also!

Tuesday, August 11, 2015

Making Life Work

So it's about 4pm on a weeknight and I just finished cooking part of tonight's dinner. And, that's late for me. I'm usually done earlier than 4pm, depending on how much I am cooking.

I know, it's weird.
And I am finally OK with that.

We don't eat supper that early. Usually we eat anytime between 5-6:30pm. For me, the earlier the better, but my husband does have a regular full-time job and well, he works until 5pm, at least. So it is pretty common for me to pre-cook dinner and then just nuke it when we are ready to sit down and eat. Because the reality is, if it doesn't get cooked early, there may be no supper. Except maybe cereal. Or take-out. And well, a healthy eating plan doesn't involve much of either of those. I don't know what people with chronic illnesses did before the invention of the microwave!

This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be, for the rest of my life. Pre-Sjögren's, I would have the typical mid-afternoon energy slump like everyone else, and then would bounce right back. But autoimmune disease redefines the meaning of the word fatigue. We are talking mind-numbing, body stopping, I can't take another step or blink my eye kind of exhaustion. There is oftentimes no warning and when it hits, look out. For some of us, it's a constant, pervasive kind of tiredness.

In the past, I would ignore the warning signals my body was attempting to give me. I was too busy trying to function as a person without an illness, in a busy world where chronic illness is usually not accepted or understood. In a world where the motto is "go, go, go", no matter what the price to our bodies may be. Just keep caffeinating. Just keep doing. And then I would get frustrated that my body couldn't keep up.

As the years go by, the fatigue issues has become more of an issue for me during the day. I started to notice that in the mornings, when many people with autoimmune illness are at their worst, I would be at my best. Maybe not always pain-wise, but definitely energy wise. I noticed a trend when I started working that there is a very specific time in the afternoon when I start to go downhill. When I sub (as a school nurse) at the high school, I have the most energy. Those hours are from 7:25am to 2pm. The elementary school is the most difficult for me and those hours are 8:30am to 3:15pm. I notice that I can predict a significant increase in my fatigue beginning around 2pm.

That is the first shift in energy levels. The second starts sometime after 5pm. It's all downhill from there and by 6pm, I render myself pretty useless. I am typically in my pajamas by suppertime. Nighttime activities have become harder and harder. I recently dropped out of a twelve week choir class because the 7-9pm weekly class was killing me. Evening church activities, conference calls, and meetings, for various things, have become something that I have had to rethink in terms of priorities. Up until very recently, I continued to do these things, despite the obvious detriment to my overall health.

There are some occasions where I can push past the fatigue to get myself to an evening event and even enjoy myself. I have come to realize that this is usually during an event I am really excited about such as a friend's party, concert I've really wanting to see, etc. After a little research on that, I found out that the chemical hormones that are released when someone is excited about doing something actually have a positive influence on a person's physical well being. Honestly, I think that is the only reason I can get myself to an 8pm concert! However the ramifications of those evening events are high, sometimes too high.

I have recently decided that for now, I am going to start scheduling my appointments, friend dates, etc.around what my body is telling me, as often as possible Nowadays, I wake up and am ready to roll between 6:30-7am and by 2-3pm, I'm done. Instead of pushing past those limits every single day, I've started to respect them. The problem is, the rest of the world doesn't always respect them or understand. Let's face it, in this country anyways, most social functions take place after 5pm and on weekends.

My husband and I go to a lot of concerts together and honestly, sometimes it is incredibly difficult. It will say that the concert start time is 7 or 8pm when in reality, the main act doesn't get rolling until 9pm. We recently went to an afternoon concert that started at 2pm and it was truly one of the best times I have had with him and some other friends of ours. I was alert and able to concentrate. I wasn't so focused on how exhausted I was and my pain levels was manageable. I had a lot of fun. Same thing for a recent afternoon Red Sox game, which started in the afternoon instead of the evening. A few hours difference can make or break a day for me and just as importantly, make or break the rest of the week.The running joke between my husband and I is that whenever there is an evening social event, no matter what time it starts, we have to be out of the house by 4pm so I can keep some momentum going!

Another example is from this morning. I had a close friend over for a visit. She's an early riser as well and we were eating breakfast together and chatting at my house at 9am. I can actually remember everything she said to me because that mind numbing fatigue hadn't set in yet.

I know there are going to be exceptions and I will occasionally have to make concessions. And,I don't expect the world to completely function according to my illness needs. But that being said, I have recently realized that I also have the choice to say no. Last week, I think I used the word "no" more often than in the previous six months combined. But, that's a topic for another post! The point is, I get to choose what is best for me. If it sometimes, or often, means missing out on things I would normally want to attend, then so be it. The right people will understand.

I recently said something to my husband about this. It was a Saturday night and we were home together watching TV. It was about 7pm and I couldn't hold my head up any longer. So I asked him if he would go to bed early with me. I'm not usually sleeping at 7pm, but I am resting in bed. I felt bad because it was a Saturday night and that had been happening a lot lately. And I told him that...that I felt bad he doesn't stay up late like he used to before we started dating, because he wants to spend time with me. His response was profound and basically he said that altering his lifestyle/routine to accommodate me was better than not being with me. Again, the right people will understand.

Since I've started listening to my body more and making adjustments, I have noticed that I am much more productive during that 6:30am-2pm time frame. Because I am rested. It's not a lot of time to work with and once school starts in September, it will be even much less so. But, the house has been cleaner, I'm getting more errands done, and I am spending more time at the gym. I am more tuned in to people and I am remembering more of my conversations with other people.

Is this the way I would have chosen to live my life? No. I'd rather not have Sjögren's at all. I'd rather live a life like I used to: sleeping eight hours a day and then being able to function throughout the remaining sixteen hours, without exception. But rather than being a victim, I'm working on figuring out what DOES work for me. You can do a lot of living in just seven hours a day. And honestly, many days, it's even less than that. My days may not have a lot of quantity, but they most certainly have a lot of quality.