For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

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Work and Chronic Illness

October 26, 2015 / / 1 Comment

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.

Low Dose Naltrexone

October 19, 2015 / / 0 Comments

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.

“What I Have Learned as a Rape Survivor”

October 5, 2015 / / 1 Comment

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

Making Life Work

August 11, 2015 / / 6 Comments

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 unpredictable…like, 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.

When They Grow Old…

May 14, 2015 / / 0 Comments

As many of you know, I have this amazing dog named Molly. She is a 13 year old (14 in two months!) basset hound/black lab mix who I adopted from a local shelter with my ex-husband back in 2003. She and I have been through it all together: serious illness, a divorce, a job loss, loss of another pet for me and serious illness, severe separation anxiety, a divorce, and the loss of a dog brother for her. Through it all, we have been constant companions.

Molly is different now than she used to be and the change happened sometime around the time I got divorced and moved into my own place with her. She used to be the hyper one, not especially affectionate, and always wanted her own way. She still wanting her own way, but the move changed her. At first, it was for the worse. The separation anxiety she experienced was bad enough that she almost hurt/killed herself trying to go through a window when she was home alone, I was renting at the time and my landlords were not appreciate of her constant howling and barking every single time I left the house. It was a hard time for me as well, because I was disabled and even getting to doctor’s appointments was a struggle, because I didn’t know what I would come home to.

It took a long time, but we worked it out. A year of behavior modification and psychiatric medications, as well as visits to a dog shrink at Tufts University, got us through the bad parts. Not to mention several kind and compassionate friends and family who would watch her for me during the rockiest of times.

I will be honest. I almost gave up on her during this period of time. My own physical needs were so extensive at the time that I didn’t know how I was going to mange the severe separation anxiety because I obviously had to leave the house. I remember one afternoon, I came home to find her panting and in so much distress. The apartment was torn apart. I sat on the floor with her and cried. Then I google searched basset hound rescues and found the one I was going to call.

I never made the call.

And from that point on, that is when the change happened. She was completely and utterly devoted to me. It’s almost like she knew…

A year later, Molly, who was about 8 years old, started to have multiple medical problems. The vet bills mounted up and the care she needed increased. The most notable incident was the day I came home from a friend’s funeral to find that she couldn’t get up and down the stairs and cried every time she tried to move. I still vividly remember the pain in my heart upon hearing her cry like that. It sounded like she was being tortured and I had never seen her react to pain at all, never mind as if someone was beating her.

Several days of hell ensued. Multiple vet/E.R. appointments got us nowhere. Then the day after Christmas, I realized she was almost completely paralyzed. I was able to get a hold of a supervisor in the E.R.who said she read what happened when Molly was brought in and I was to put her in a car immediately and rush her to the MSPCA Angell  Boston Animal Hospital, two hours away. Because of my own limitations at the time, I had to call a friend to get her in my car for me. We drove to Boston, during a major winter storm. I honestly thought we might not make it there in one piece. I also knew that I had to try and get her there.

She received the best possible medical care there. After a lot of tests, I was told that she had a ruptured lumbar disk in her back and that was why she was paralyzed and couldn’t go to the bathroom correctly. I was told that a $5000 surgery was needed and it was thought that the surgery would help her walk again and get rid of her pain, but there were no guarantees. Even if the surgery accomplished all this, she would most likely be incontinent of urine and stool the rest of her life. I could do the surgery, or have her put to sleep. The decision was mine.

I don’t know if words can adequately express the agony in making that decision. The only financial resources I had at the time was some money from the sale of my house during my first marriage. But, I was also on disability and that was the only money I had in the world to fall back on. Taking $5000 out of it could have serious consequences for me in the future. I also wanted to do what was best for Molly. I didn’t want to prolong her life if it meant a life of  pain and suffering. Would I even be able to care for her long-term? The aftercare from the surgery alone would be incredibly difficult.

I remember my boyfriend at the time (my now husband) just holding me and letting me cry. I prayed a lot. I decided to go ahead with the surgery.

Molly came home several days later. She was never incontinent after the surgery and made a full recovery. The doctors were astounded. I know we were lucky. We trudged through the following few weeks of her recovery together.

The years since that day I made that difficult decision have been a blessing. I got married. Molly took really well to my new husband and once we moved into his home, she rarely ever had separation anxiety issues. She remained my constant companion. She continued to be by my side during several medical crises. She kept me company during those long days and weeks when I couldn’t get out of bed and my husband was at work all day. She was my emotional healer.

It has been an interesting experience watching her age, and a precious one at that. I’ve never been responsible for a senior dog before and I will say, I treat it as a privilege. I watch her get grayer with each passing week. I see how drastically she has slowed down in the past year or two. No more one hour walks romping through the park. No more play dates at the dog park because it is just too much for her. We have to be vigilant about keeping on top of her pain medications and some other health issues, especially as the arthritis continues to progress from her back surgery all those years ago. I have made a commitment to her that when she is ready to go, I will not prolong her life.

I will not let her suffer.

Mother’s Day passed by recently and I was so appreciate of the dog mom friends I have on Facebook who were so happy to claim themselves as dog moms with all the different memes. I never had children of my own and Molly has helped fill the maternal need that I have. I have taken some crap about that and heard all the jokes, but really, it is serious business. She instinctively knows when I am suffering, either physically or emotionally. She acts in ways that make my husband and I laugh so hard, we can make a whole evening of it. She gives and gives and gives to us every day, expecting nothing in return. Sometimes society, and the people in it, judge how we love. They say there is no love like the love between a mother and a child. Or you have not truly loved unconditionally unless you have a partner or a spouse,

No, love is love. We each get to define it for what it is and for how we feel it.

I had an opportunity this week to talk to someone about Molly. A person who doesn’t know her. I explained to her that it is a love like I have never known. It’s not better or worse than the love I have for my husband or say, my parents, but it is very different. It is the fierce, protective love that is demonstrated by putting her needs before my own and trust me, it has happened many times. It is a quiet, unconditional love that has no rules; no boundaries, no expectations.

It is a love of true acceptance.

Up until recently, I was sometimes afraid to love Molly over the past two years. I knew she was getting towards the end of her days and I thought the pain of the loss would be more than I could bear. A few things happened to change that. I started leaving situations out of my control in God’s hands. I realized that I could make more out of the time we do have left. I would also see profiles on dog rescue sites of elderly dogs abandoned by their owners, because they could no longer care for them. Dogs who have multiple health issues. Elderly dogs who get treated in many ways similar to elderly people in this country-like they are disposable.

I made the very difficult decision this week to have Molly put under anesthesia to get her teeth cleaned. It was a difficult decision because of her age, a heart murmur and a new found problem with one of her liver tests.There was some concern though that two of her teeth were very bad and maybe causing her pain, Some of those in my life disagreed with my decision, but I was OK with that. I made my decision based on my promise to her: that I would not let her suffer, no matter what. If it was God’s will to take her during the procedure, then she would go peacefully, with no more pain.

The procedure ended up being twice as long and twice as difficult as anticipated. Seven teeth had to be extracted, as well as some root work that included a bone graft. A biopsy also needed to be performed. She is now recovering well and while I am grateful, I am not really surprised. She’s a fighter that one. And now, she will live whatever time she has left without pain.

And we will love her just as much as ever.

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