Tuesday, December 15, 2015

Saying Goodbye To My Gallbladder

This is going to be one of those posts that I wish I had access to during some critical decision making times over this past year. I did more Google searching about this topic than almost anything else I have ever researched in regards to my health and when it came to personal experience stories, there wasn't much to choose from.

So this is my little contribution to the world today in the hopes that it can help someone else who may also travel down this particular path. If you're not interested in a good gallbladder story, no worries, I will get around to writing something different soon.

This story begins in February 2014. I was working at a church function one evening when all of a sudden I began to have sharp pain from the upper middle of my abdomen radiating to my right side. It was a pain I had never experienced before. I ignored the pain as my husband and I had Valentine's Day dinner plans we were looking forward to. About an hour later, we were in the car on our way to dinner and the attack was so bad, I thought I was having a heart attack. I asked him to pull into a fire station because I honestly thought I wasn't going to make it to an emergency room. That resulted in an ambulance ride to the hospital where I was told maybe I had gastritis and to follow-up with my gastroenterologist (GI). My blood work was fine, as was my heart. And nobody bothered to do an ultrasound or any other scan. Within a few hours, the pain subsided. Within 48 hours, the pain was pretty much gone.

I saw the GI doctor who was following me for other autoimmune related GI issues. I had an abdominal ultrasound done a few months before because it was discovered in 2008, during a scan for something else, that I had a cyst on my gallbladder, so I was getting ultrasounds every six months just as a safety precaution to make sure the "cyst" wasn't growing.

All was well until around May 2015. I started to notice that I was getting fuller quicker when I ate and my bra and pants seemed tighter, even though I was losing weight. I also noticed that I would get that mid-upper abdominal pain (also called epigastric pain) once in a while, sometimes after I ate and sometimes randomly. I wasn't overly concerned about it because as an autoimmune patient, there is always something wacky going on in my body. Some things end up a big deal and some just end up going away by themselves. However by June, I decided it was worth a call to my gynecologist. I was forty-four years old and the same exact age as my mom when she was diagnosed with ovarian cancer.

For those of you who don't know, ovarian cancer is known as a silent killer because the initial symptoms are so vague and includes symptoms such as bloating and feeling full quickly while eating. I went in for an exam and had a pelvic ultrasound which showed that everything in that arena looked good. Whew!

By July though, I was feeling worse and experiencing issues with nausea for the first time. I made another appointment with my GI doctor. A few days later I had lunch and got that epigastric pain that was more intense than it had been. It was right after eating a salad with grilled chicken and some salad dressing. My husband and I had plans to meet friends for an evening out so I sucked it up and went.

I was feeling a little better by the time we got to the concert and proceeded to eat a cheeseburger with a side salad and rice. Within fifteen minutes I was in the bathroom vomiting and I honestly don't remember too many times in my life where I've been in that much pain. Same pain, epigastric and radiating to my right side, under my ribs. I STILL stayed at the concert, however after throwing up again, I asked my husband to take me to the emergency room. By the time we drove the ten minutes there, the pain was out of control and extended all the way around my right side into my back.

In the emergency room, where I honestly thought I was going to die from this pain, I was given nausea medicine and several doses of narcotic pain medication, which helped tremendously. The attending doctor thought I was having gallbladder attacks and scheduled me for an abdominal ultrasound the next morning. I was given prescriptions for pain and nausea medicine, told to call my GI doctor for an appointment ASAP, and sent home.

And that's when the fun really began (note sarcastic tone here!)

I just never bounced back. I had the ultrasound, which was negative and saw the doctor. He thought it was either a stomach issue or my gallbladder. To me the gallbladder seemed more like the culprit because 1. I'm a nurse and 2. I had lost a lot of weight, which can precipitate a problem with the gallbladder and 3. I had an autoimmune disease that causes inflammation, and that includes in the gallbladder. Meanwhile, I revamped my diet even more to cut out as much fat as I could in case it was my gallbladder.

So the doctor sent me for a HIDA scan. A HIDA scan is a nuclear medicine study that evaluates how well, or not well, your gallbladder is functioning. I thought for sure that this scan would tell us either way if the problem was gallbladder related or not.


Despite the fact that I felt significantly more pain during the test, which apparently can be an indicator of gallbladder troubles, my scan came back inconclusive. Typically, the ejection fraction of the gallbladder is considered normal it it is 35% or greater. Mine was 32%. Based on that, the doctor decided that the issue was not my gallbladder. He offered me two options: to do an endoscopy which would look at my stomach or see a surgeon to get his opinion on the matter.

Well, if someone tells you that it's not your gallbladder, to me the next logical step would be to check the stomach, especially since some of the pain was in that region. So I checked myself into the hospital, got sedated, and had an upper endoscopy done. The results were normal.

A few days later I was starting to feel better, only to have that abruptly change for me by the following week. I had nausea, pain under my right ribs, pain in my mid-upper back and stomach area, my pants and bra didn't fit, and I felt pretty unwell in general. Eating was becoming more and more of an issue as oftentimes I would feel sicker after eating. I called the doctor back. He told me he didn't know where to go from here. Since people with Sjögren's syndrome can have a stomach motility disorder called gastroparesis, I asked him about that. He didn't think that was likely, but really had nothing else to offer me so I was scheduled for a gastric emptying study.

The results were normal.

He told me this at my follow-up appointment and then, all of a sudden, told me he thought the issue was my gallbladder. Like, out of the blue, despite no new information since the previous appointment where he told me it WASN'T my gallbladder.

OK, so this is where we are going to take a brief pause in the story. At this point, I knew I was in a mess and to be honest, my trust level in my GI doctor had taken a nosedive. While I respect the fact that medicine is not always an exact science, I wasn't confident enough in his diagnosis to put myself under the knife. I was so frustrated and I didn't know where to turn. Also at this time, I was being interviewed for a new part-time job. For a year and a half I had been working as a substitute school nurse, but this was my chance at a part-time school nurse position, which would be the first time I have worked on a regular basis since going out on disability in 2008. Needless to say, it was a big deal.

I decided to go ahead with the interviewing. I also discussed the situation with my super fantastic rheumatologist who also thought it was likely to be a gallbladder problem. She referred me to a GI doctor in Boston and I also set up an appointment with a general surgeon for his opinion. While gallbladder surgery these days has become routine, it would be anything but routine for me. If I had surgery, I would have to stop one of my autoimmune medications (the one that actually helps some) and I would have to consult with a hematologist because of my history of blood clots in my leg and lungs.

I ended up getting the job. The day after I started the new job, the surgeon told me he wanted to remove my gallbladder, like now. I was so upset. I felt like we'd been screwing around (for lack of a better term) all summer with this issue and now that I had this great opportunity, I felt stuck. What do I do? September and October at a new school is the absolute worst time to be out of work. So, I decided to tentatively schedule the surgery for my Thanksgiving break and meanwhile get a third opinion in Boston. I went to Boston and saw the new GI doc. He was great. He understood the dilemma I was in, but felt like because of this mysterious gallbladder cyst and my symptoms, it was worth the risk of doing the surgery. I felt like with all the information I now had, surgery was the next right step.

I never made it to Thanksgiving week.

During my pre-op appointment in October with the surgeon, it was decided that it would be to my great benefit to have the surgery sooner. So I let me boss and co-worker know and I was able to take off two weeks for the surgery and recovery.

Best decision ever.

On November 4th a had a laparoscopic cholecystectomy done. Now, as a nurse who has taken care of KIDS who have had this surgery, I really thought that two weeks off from work was overkill and that I would be up and around within a day or two. However the surgeon advised the two weeks off so that's what I did.

The surgery itself went really well. For those of you not familiar with laparoscopic surgery, it is supposed to be an easier way to remove the gallbladder, as opposed to doing a full open incision. Instead, they make four smaller incision in various spots in your abdomen and use a variety of instruments to fill the abdomen with carbon dioxide (so they can visualize all your organs and such) and disconnect and remove the gallbladder through one of the keyhole incisions.

I woke up from the anesthesia and the first thing I noticed was how much pain I was in. I was forewarned about the shoulder pain and bloating you can have post-op from the carbon dioxide gas they use to inflate your abdomen. They were not kidding! However, I also noticed that for the first time in about six months, I didn't feel like I had a baseball stuck under my ribs. I had felt bad for so long that it felt weird to not have pain in that area. And all my back pain was gone as well.

In the recovery area I really struggled with nausea and pain and despite numerous different pain medications, they just could not get my pain under control. I had great relief from a Dilaudid injection which lasted all of about an hour, but the oxycodone they gave me didn't touch me at all. However I was able to drink and eat a few bites of saltines without vomiting, after they gave me a nausea patch behind my ear.

Then next thing I know the doctor comes by and it's obvious that my pain issues are not significant enough to anyone to keep me overnight. And at that point, I was so miserable, I just wanted to get home and figure out how to manage the pain myself. The doctor told me that they sent my gallbladder to pathology, but that he didn't see any stones. However he said that part of my gallbladder WAS anatomically wrong. It was actually folded in half at the neck (Phrygian cap). He told us that while that usually doesn't cause major issues, it may have been the cause of my issues.

So my husband brought me home. I am going to preface this part of the story by saying that I know a lot of people who have had gallbladder surgery, and most of them recovered quickly. One or two did not. But, don't let my post-op experience freak you out. It was thought that a big part of the reason that my recovery was more difficult was because I waited so long to have the surgery.

My biggest recovery issue was pain. I had a lot of incisional pain at two of the sites, gas pain in the shoulder something fierce, and abdominal muscle pain like you can't even imagine. Nobody warned me about that. It felt like someone had gone into my abdomen and beat the crap out of me. It was difficult for me to even turn in bed and for the first week. I could not sleep lying down. I was slower than most in going back to eating a regular diet. The pain medication I was on was the same one I use for bad arthritis flares and it did very little to help the surgical pain. I was also trying to take as little pain meds as possible so I could restart my autoimmune medication, which cannot be mixed with narcotics.

I also experienced a lot of diarrhea the first two weeks, which is very normal, and common. I was told that some people struggle with that for quite a while, like sometimes forever, but it resolved relatively quickly for me. And, I was just completely physically wiped out from the surgery itself. Then, I ended up experiencing a very bad case of depression during the first two weeks after surgery. Like, scary depression. I wished someone had warned me about that as well. I guess it can be a result of the trauma from surgery.

But you know what? It all got better. Two weeks after surgery, I worked one full day and then a half day and then I was on break again for Thanksgiving. I probably could have used that one week off as well, but I really didn't want to miss another week of work and it was good for me to be back among the living!

Today, I am six weeks post-surgery and things are pretty good. I have had a few twinges of pain below where my gallbladder was. This is normal and I now haven't had that for about two weeks. One of my incisions wasn't healing properly and had to be reopened a little. That sucked, but now it is fully healed. I am eating well, but I have noticed that I seem to have a bit of an aversion to any foods that are fried or high in fat content. It's almost like my body is trying to tell me to reject those foods. I also eat smaller portions, but none of this is bad. The pain  is gone and the nausea, vomiting, bloating and back pain is all gone. In general, I feel more well.

I did have to go on a course of steroids, which I'm on now, to quiet down my autoimmune stuff. I made it through the recovery with no blood clots, pneumonia, etc and I am very grateful for that. I am having an issue with continued right chest/shoulder pain, which I first noticed when waking up from surgery. The surgeon has told me several times that it cannot still be trapped gas and that maybe things just need time to settle down. It has improved some since starting the steroids, so I am going to try and wait it out for now.

I did get my pathology report back during my post-op visit. In addition to the folded gallbladder, that little cyst ended up being a solid tumor which thank god was benign, and I had significant cholecystitis (inflammed and diseased gallbladder). So the end result was that my gallbladder was the cause of all my woes. And now, I never have to deal with it again.

As you can see, this was a very trying journey for me and I think there are a lot of lessons to be learned from my experience. To start with,like I say all the time, you have to advocate for yourself as a patient. I knew something wasn't right with my body and I also knew that it was something beyond my typical day-to-day health issues. And I kept at it until someone listened to me and then figured it out. Tests are not the end all-be all of diagnosing people. The fact that my gallbladder was even showing a 32% working capacity at the time of the HIDA scan is even amazing to me. And yes, I am now officially seeing a new GI doctor.

Just as importantly, everyone heals at a different pace. Keep your expectations to a minimum. Heal on your own timeline and not on the timeline of a friend or family member who may have breezed through the surgery. Make sure you have a good, solid pain control plan in place for after surgery and that you understand that no matter how common a surgery this may be, it is still a major assault on your body. While people say you can live without a gallbladder and that is true, it actually does serve the function of storing bile to break down fats. Once that's gone, your body has to completely change the way it operates. And that takes time. Not forty-eight hours or even a week. We're talking months for a complete recovery.

I would also suggest getting out of bed and walking right away and making sure you do that several times a day, no matter how bad you feel. I firmly believe that is why I didn't have any major post-op complications. The day after surgery my husband took me to a walking trail and I walked for ten minutes. Three days later, my parents drove me to a craft fair for a few minutes and the following day I was at church. Was it super hard and painful? Yes! But also very necessary.

A good heating pad is essential for the gas pain the first week or two and I can't stress enough the importance of using a pillow to splint your abdomen when you move around, cough, etc. Keep your diet light for the first few days. See if you can get someone to stay with you the night you come home from surgery and the entire following day. Most of all, be patient with yourself and know that it will get better, one day at a time.

Monday, December 7, 2015

Dressing My Outsides

For all kinds of physical and emotional reasons, I was having a really tough morning yesterday before church. And without me saying a word, my husband, who was already up, looked at my face and tucked himself into this sliver of leftover room on my side of the bed. And he held me. And I sobbed while telling him my woes. In my head, the next step was to huddle in my self-made nest for the rest of the day, away from the difficulties of the world and away from the struggles it takes these days for my body to function in the world.

My husband is very good at respecting my space and knows that sometimes I just have to do what I have to do to get by and care for myself. Apparently yesterday was the exception. Or rather, maybe yesterday, he knew better than I did what would work for me and wallowing in bed all day wasn't it. He reminded me how much I would enjoy seeing our friends at church. I thought that some quality God time somewhere other than in my house was probably a good idea.

But then he said this:

"We should definitely go clothes shopping for you today."

Ugh. And he was doing so well!

Some, if not many, women would be catapulting their bodies out of bed upon hearing this, pain or no pain. Me, not so much. I'd rather stay in bed and watch reruns of The Kardashians. Seriously.

The back story to this goes as follows...

My husband does not care what I wear, ever. If he does, he never says a word, except maybe to point out that I wear a lot of black, and dark colors. Duh? I've been overweight my whole life! Dark colors are my savior! It's just been recently that I've been able to convince him give me an honest opinion about how something looks on me. He has asked several times to go clothes shopping with me and except for one time when I caved during our dating days, I'm usually like, "No way in hell."

I hate clothes shopping. I can tolerate it a little more now that I'm seventy-two pounds lighter, but I've never been good at figuring out what looks good on me, how to mix and match pieces to form what I guess women call an "outfit." Because I was overweight as a teen and young adult, I almost never went shopping with my friends. The one or two times I did, I would get embarrassed because nothing in the cute stores came close to fitting me. And there was no way I was asking my friends to come into the plus sized stores with me. I was not the confident, rocking her size, teen, that is for sure!

And things just got worse from there. I used to go shopping with my mom, but by the time I got to 252 pounds, that stopped as well and so most of my adulthood, I have gone clothes shopping alone, except for my wedding dress. It's definitely easier for me to shop now, yet it still seems all so complicated, especially with woman's clothes. Seriously, I can wear a medium in one top and an extra-large in another. Same for pants: so many cuts, styles, etc. In the past few years I was trying to stay with two particular brands at Macy's because I could find some things I like and I would try to stick with those brands. But, I don't enjoy clothes shopping and I wasn't completely sure of all the reasons why until yesterday.

So back to my story. I agreed to go for several reasons. First off, I really needed some warmer weather clothes, badly. Because I hate clothes shopping, when I do go, I tend to just grab things that are on sale and if it fits and doesn't make me look like a house, I'll buy it. It's usually a few weeks later that I realize in fact, I really don't like it and just bought it so I would have something to wear other than sweats and pajamas. And when I DO find something I like, I wear it to shreds, literally.

Second reason, I've been complaining to my husband for years about how I think I am missing a fashion gene and wished I could look as put together as many other people do. If we were rich, I'd have someone do that for me. For sure. He wanted to go shopping with me solely for the purpose of helping me and giving me another opinion. I have complete trust in him that he would do that in such a way as to not shred my self-esteem. I figured I couldn't keep complaining and then not accept the help that was being offered to me.

Third, and final reason, I decided to go was because I wanted to feel better about my appearance. I am a creature of comfort and I love my fleece jammies, oversized sweats, etc. I don't give a hoot about what anyone else wears. And, I fully believe that what is on the inside counts, not your hairstyle, your Gucci bag, what you wear, etc. etc. But, I have been finding lately that I want to look nicer on the outside. I think it's because I have spent so many years recently barely getting through the days physically, that how I look on the outside has been a low priority. But the longer I live with a chronic illness, the more I realize that I don't want my outside to look as bad as my physical insides. I want my outside to reflect my spiritual inside, the part of me that is filled with light.

Taking some time on my hair, makeup and clothes once in a while makes me feel more confident and more secure; that I am putting my best foot forward. Will it be an everyday thing? Probably not. But it gives me the power and control to not look like a "sick person."

I was a little nervous about how this shopping venture of ours was going to go. My husband had gotten some clothes for himself lately. Bunch of sweaters, pants and two new pairs of shoes came in the mail. The mail?? Anyways, besides ordering the shoes, the whole experience probably took him twenty minutes.

So as we drove to the Holyoke Mall, I reminded him that this is not going to be a twenty minute venture, but that I wanted to streamline it by only going to two stores, right next to each other. My ability to be on my feet or walk has been significantly impacted recently, so streamlining was important. We were going to Macy's and then a shoe store next door so I could find some boots.

Immediately I realized one of the reason I hate clothes shopping so much. It is absolutely physically and painfully exhausting for me. Carrying all the stuff to the dressing room, getting dizzy every time I change positions while trying clothes on, going back for a different size, etc. No wonder I never want to go! My husband held everything as we went around and he would also go and get a different size if I needed one. I couldn't believe what a difference that made for my physically.

I promised him I would be open-minded and try things on I wouldn't have tried on before. And, I did. Some didn't work out, but surprisingly some did. He gave me honest opinions like I asked for, without putting me down or making me feel self-conscious. I'm not sure I would say it was "fun", but I did enjoy the process with him more than I usually do. I definitely enjoyed the support. I probably tried on approximately forty different pieces of clothing. Typically in the past,I would have left with MAYBE one or two items. Yesterday we left with ten I think. Definitely a success!

Most importantly I enjoyed what I learned from the process of shopping with my husband. He picked up so many items that I would have normally walked past. And then if I said "no", he would ask me for a reason. For example, he held up this shirt and when he asked why not, I told him the cut was too wide and flowing and would make me look bigger. But then he held up something else a little while later that was more fitted and I told him that would make me look too fat in the middle. He looked at me like, "What?!? Which is it??" And I realized that when I shop alone, I spend a lot of time finding excuses for not even trying something on and while I am doing that, I am internally beating myself up. By the time I do get some items to the dressing room, I have already defeated myself. Is it any wonder why I don't enjoy clothes shopping?!?

We all have preferences obviously. There were many things he held up for me to inspect and I just thought something was ugly, too heavy, etc. But I tried many things on that actually looked great and we tried to make my life easier by buying a few basic items that could all be mixed and matched so I'm not standing at my closet every morning wondering what the hell to do.

I guess my important take home lesson from yesterday is that I am not necessarily lacking a fashion gene, but rather, I am still lacking confidence and self-esteem when it comes to how my body looks. And honestly, that issue is getting old. I'm forty-four years old, in the middle of attempting to make a major career comeback without falling apart physically, and I have some serious living to do. It's time to accept all parts of me, not just the ones that I think are more desirable.

It's time we all did.

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.

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 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.

Thursday, July 9, 2015

Boston, Saliva, and Other Musings

I woke up early this morning and did not start the day off on the best note. I was scheduled for a doctor's appointment in Boston at 10am with a new oral medicine doctor at Tufts that I saw for the first time three months ago. And as soon as I woke up, I was dreading the drive (1 1/2-2 hours each way) and the pain that was going to come with seeing her.

I started seeing her because my current rheumatologist thought she could help me with the pervasive, severe dry mouth issues I have been having since I developed Sjögren's syndrome. To be honest, I wasn't sure what she could do for me that I have not already tried. But, that first visit convinced me I was in the right place. I found out that the swollen lumps in my neck, that doctors told me may be enlarged lymph nodes, were actually blocked salivary glands. At that first visit, she used pressure/massage and suction to remove small salivary stones from my glands and gave me instructions for other measures to do at home. Honestly, it was really not a pleasant experience and very painful, but in the end, worth it, as I have noticed an increase in saliva production the past few months.What many people don't know is that these stones can get so large that the gland has to be removed and once that happens, it's all downhill from there. If you take the gland that produces saliva, much less saliva. And, much more discomfort and complications.

So I got up this morning and got ready for another trip to Tufts, knowing more discomfort would come, but realizing the importance of the appointment. In addition, it was injection day and for some reason, today's was much more painful than usual. And it got me to thinking, especially as I was getting ready to leave and throughout the drive, about how much I go through with this illness. This of course brings up the typical questions that usually arise when I am feeling a little sorry for myself such as, "Why me?" and "Why do I have to suffer so much just to get through the day?" Then I realized something huge. Huge, and sad....

I don't really remember what it was like to feel "normal."

I have been symptomatic with Sjögren's since about 2007-2008 and I don't remember what it feels like to exist in my body without pain, fatigue, dryness, or organ complications.

Kind of like when someone close to you dies. For a while you remember their scent or what it felt like to hold them or hear their voice. Then, as the years go on, some of those tactile memoires fades.

The way I move about in the world has changed dramatically because of Sjögren's. The memory of an able body that moves without effort or hesitation has left the recesses of my mind. I don't have the right words to adequately describe  the sorrow that comes with that knowledge.


My plan for today was to drive to Boston for my appointment and drive right back home. For some reason, I was under the impression that is was going to be like ninety degrees today. I got to Boston, with relative ease, which was a nice change, and it was in the high 60's. Now anyone who knows me well, knows how in love I am with the City of Boston.

Like, head over heels obsessed.

This obsession started when I began dating my husband, who is a Boston native. He can drive the streets of Boston like the maniac local he used to be. No fear and always knows how to get somewhere, eventually that is. As a native of the western part of the state, before he and I met,I enjoyed going to Boston on rare occasions, but it always felt inaccessible to me.

It was my husband who gave me the gift of Boston.

He showed, and still shows me, the points of interest, the back streets of the neighborhoods, and the places where I can soak my mind in history and culture. It was he who helped me find the courage to take the T (train) around by myself. It was he who helped me find the courage to roam the streets of the city without a map.

I keep thinking with every trip I take to Boston, and there are many, that the excitement will eventually wear off. That the city will become ordinary to me and my wanderlust of the streets and neighborhoods will fade with time.

But, it never does.


I got to my appointment and as I got out of the car, I realized how cool it was outside. And, how much it would help my mental state if I spent some time walking my favorite city. I had casual clothes on and my best sneakers, orthotics and all.It was like God was saying to me, "Here is an opportunity to feel better....take it." I called the dog sitter, who said she would be happy to go pick up my dog, so I didn't have to rush home.

I had my salivary glands suctioned out and while it was not pleasant, it was easier than last time. My guess is probably because it was done before, three months ago, On top of that, the saliva tests that were run showed that I was actually producing more saliva. She talked to me about some promising treatments coming down the line including a clinical trial she will be doing with a new biologic medication and the use of BCP, a vaccine for tuberculosis, for autoimmune disease.

The doctor was happy. I was happy.

But here is what REALLY made me happy: how I was treated at this appointment. She had a new assistant doing my salivary tests and getting me ready for the appointment. She talked to me like a person, and not as a blood pressure or a temperature to take. We talked about our summer plans.

The doctor came in. I have seen her once for an appointment and met her twice, briefly, during SSF events. Yet, she remembers important facts about me that a previous doctor I had for four years, wouldn't be able to recall if her life depended on it. Like the fact that I am a lymphoma survivor. And, that I wrote a book. And I like the fact that she can joke around with me and make me laugh. Or randomly ask one of her students why she is wearing such uncomfortable shoes.

Things that make me feel human.

Those of us with chronic illness need simple things...

We want to be taken seriously.
We want to be treated as more than an illness: as a human being.
We want things explained to us.
We want to be heard.

So I left my appointment feeling better than when I went in. After checking out some possible venue sites nearby for an upcoming SSF Sip For Sjögren's event, I went back to my car and dumped my purse, my samples from the doctor's office, and everything else except for my phone, my driver's license, a credit card, and forty dollars.

And off I went into the city I love.

I walked through Chinatown and ended up at Boston Common. I somehow found my way to my favorite gluten-free restaurant and enjoyed lunch by myself in a comfortable booth outside on Charles Street. Prime people watching spot! I meandered to the Public Garden where I sat on a bench and did more people watching.

It's a rare thing for me to walk around Boston during the summer. It's usually much too hot and sunny for my autoimmune ridden body. Not today though. It was perfect. And because it is summer, school is out, and people are on vacation, the city was bustling. The swan boats were in full swing and every corner you turned, there were street performers.

I made my way through Downtown Crossing and to Faneuil Hall and Quincy Market. It was like a party there...a dance troupe and musicians everywhere you turned.  I window shopped. I passed two large tour buses that certainly looked like they belonged to someone famous, evidenced by the increased police and security presence. The energy was high, and so was I. High from having my soul and my spirit filled by a city I have come to regard as a second home.

I guess my point in all this is to emphasize how important it is for those of us with a chronic illness to care for our spirits and our souls as much as we have to take care of our bodies. Boston is my refuge. It's probably not yours. A city may be the last place you find solace when you are feeling overwhelmed from the enormity of it all. But find something. Something that reminds you that you are more than your illness and that there is life outside of the daily drudgery of medical appointments, medications, and tests.

Something that reminds you of the beauty that comes with being alive.

Thursday, May 14, 2015

When They Grow Old...

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.

Friday, May 1, 2015

Divorcing Sjögren's

I cannot believe I didn't blog the entire month of April. I knew it had been a while, but I didn't think it had been that long. I sat down this morning to do some writing and look over the blog design, as well as my Thoughts and Ramblings Facebook page, and I realized how much I have missed writing. I also realized that last month was the FIVE year anniversary of this blog!

Lots of stuff has been going on. For the past couple of months I have been working vigorously on a few things to help improve my quality of life, physically, mentally, and spiritually. I will be honest, it has been super tough. It usually is when you take an honest look at who you are, where you came from, and where you want to be headed. It has meant being rigorously honest with myself and well, let's face it, that can really suck sometimes. However, I am now seeing the benefits of all that hard work and I am excited about the future.

It can also be tough heading into uncharted territory in regards to my health. I have had some neuropathy issues going on as well as some possible autonomic neuropathy issues. I am currently on an aggressive alternative medicine course to try and manage those symptoms and if that doesn't work, I already have a very precise and well thought out traditional medicine plan worked out with my rheumatologist in terms of testing and figuring this all out. My guess is, it will be a combination of both alternative and traditional medicine that will help me deal with this new part of my Sjögren's journey.

The good news is that I realized yesterday that for the first time since the autoimmune journey began around 2007/2008, this is the most confident I have ever felt with every single one of my medical providers. I have had some great doctors in the past, but at this point I feel like I am being completely heard and I am an active partner with every one of my medical providers. I have ten providers (both alternative and traditional) that I am actively seeing now and I don't experience the anxiety I used to have. As I have talked about before, I made some difficult decisions last year about switching some of my providers in order to obtain better care and it's nice to see that those decisions worked out for the best.

Besides the neuropathy pain and dryness issues, I am actually holding my own. My joint pain and fatigue have improved dramatically. I am certain that  the improvement in the fatigue is related to someone FINALLY listening to me and following through about my thyroid and making some medication adjustments, as well as a change in my nutrition. The thyroid is not perfectly regulated, but it is much improved. Everybody kept blaming the fatigue solely on the Sjögren's when I have also had this longstanding thyroid issue since I had radiation to my neck a million years ago.

Besides working at my nursing job more recently, one of the other reasons I have been off the blog grid is that I have been working hard at changing the way I deal with Sjögren's and my health. That has been a gradual process for a few years, but I have been looking at it much differently lately. I think I have blogged before that I see a therapist who has experience in dealing with chronic illnesses and we have definitely made progress.

However, things kind of got to the point a few months ago where I was just sick and tired of talking about this illness all the time. I wrote a book about it, I talk about it at appointments all the time, and I was blogging about it a lot. Thoughts and Ramblings, and its associated Facebook page, is not all about Sjögren's or even autoimmune disease, but that's the direction it happens to take because so many of my readers have autoimmune illnesses and it is a place to share and exchange good information about the illnesses and their treatments.

And that's not going to change; but I was at a point where I needed a divorce from Sjögren's for a while. We all know that it's more like a separation rather than a divorce, and even the separation can only be partial because this illness invades every aspect of our lives. But I was able to find some separation. I stopped complaining about all my symptoms either on social media or to my family/friends. I stopped doing follow-up appointments with doctors just for the sake of having a follow-up appointment when things had been stable in that particular area. I stopped researching stuff online and lessened my visit frequency to the online Sjögren's groups. I still took my medications and attended necessary appointments. I was still spending about two hours a day dealing with the illness and its symptoms. But two hours a day was better than four!

I decided that for now, I am not writing another Sjögren's book.

I felt guilty at first because I know this blog, the Facebook page, and me as an individual have a lot to offer to those suffering from autoimmune illnesses. And, they (and I) will still be here. But my brain cannot be Sjögren's focused all the time for the rest of my life. I found that when I did do this separation, it was a very good thing. I pushed myself harder, especially at work and other projects, and I found that I can be of use to this world in other ways. I also found that my anxiety lessened significantly, I wasn't as fearful, and I could cope better with the physical challenges that did come my way.

I have been criticized in the past (even by a person with Sjögren's), and somewhat recently, for some of the things I say and especially write, in regards to keeping a positive outlook when dealing with a chronic illness. The feedback mentioned that I may not always be realistic in how miserable this illness can be and that not every autoimmune story has a happy ending or a positive lesson to teach. Or I'm told I must have a mild case of Sjögren's because I am upbeat. I tell them to go read my blog for the past five years and read about my journey. My attitude and disposition is inversely proportional to my physical experiences. I have a positive attitude most days, not because I don't suffer or struggle, but because I actually get to be alive.

And loved.
And I get to love back.

I know many people may not want to hear this, but I think many times, myself included, we get ourselves so wrapped up in our illness that we don't see any other possibilities except to be miserable or be a victim. And you know what? I get to do that sometimes. I get to be upset. But the problem is we take on our illness as our identity instead of it letting it be a part of who we are just like being a nurse or a writer is part of who I am. Rather than living my life as a victim, I want to live it as just me. Chris.Those of us with Sjögren's do not corner the market on pain and suffering. Those of us with autoimmune diseases do not have exclusive rights to the pain and suffering in the world. We all have something, whether it is physical, emotional, or spiritual pain. It has been that realization that has enabled me to recently step out of Sjögren's and step into helping someone else. It has enabled me to step out of Sjögren's and step more into the world.

So what can you step into today?

Wednesday, March 11, 2015

Loving Someone With A Chronic Illness

This post is being prompted by an incident that occurred last night. One that unfortunately, happens more often than I would like. And much more often than my husband would like. As I have talked about previously on this blog and on its Facebook page, I have been struggling with some issues regarding my feet. The issues started last July and after seeing a doctor, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome in both feet.

The short version of the story is that I have been through months of physical therapy, countless doctor's appointments, night splints, trigger point therapy, orthotics in my shoes, the list goes on and on. It is likely that Sjögren's is a contributing factor and possibly the cause of this. Starting in December, I decided, after much consideration, to consent to cortisone injections in both feet. I had one in each foot with some relief, but the relief was only temporary. I then had a second injection in my right foot two weeks ago today and after a few days of some relief, things went from bad to worse, and pretty quickly I might add.

My right foot is now at the point where the tarsal nerve is so messed up and irritated, that a good part of my foot is numb. I am also getting little electric-like sensation from time to time and some pain. I am scheduled for an MRI at the end of this week and have been given strict orders from my doctor to stay off my feet as much as possible, with the exception of going to work. Luckily, I only work about two to three days a month for six and a half hours at a time. I was told absolutely no exercising or long distance driving, and I had to give up the one thing that always helps my stress and that is yoga.

So after working a regular shift at the school yesterday, I started with some pain around 5pm that by 8pm, had me reduced to tears. While I figured it was good that I could actually FEEL something in my foot, the pain became unbearable. Despite how much I go through with Sjögren's and pain, it is rare for me to end up in tears over it. The pain medicine I could take would likely keep me awake all night, but I decided to go ahead and take it, as well as some heavy duty sleep medication that I save for emergencies like this. Today I woke up rested, and with a numb foot again. But, crisis temporarily under control.

My husband was with me last evening and I have to say, he did a fantastic job of helping me through the evening. It is so hard for him, I know it is. We laid in bed together watching TV for several hours while I worked through this incident. Actually, WE worked through this incident together. However I know it is hard for him because we have talked about this issue enough for me to now understand how difficult it is for him to see me in pain or in a really bad way.

I didn't really know this or get it when we first got together...how much he struggles when things go bad with me. I didn't know because he is so stoic and calm. He always tries to cover his fears for my sake. But I know. Now I do anyways.

As we have grown together as a couple, our talks have helped him to understand my needs and what works for me. And the talks have also helped me to understand some of what he is going through when I am having a medical crisis of some sorts. And what works for us may not work for every person with a chronic illness or the person that is trying to care for them or help them.

Last night, like all the other times recently, he really got it right. Trial and error I suppose. And some really good communication on both our parts. For example, when I am in that much pain, I want to be held, but not too tight. Its hard for me to have the TV too loud or too much stimulation around me. I also need some type of physical distraction so what he does is he gently rubs my head, or massages my legs, or some other physical touch that helps my brain distract from the pain that I am experiencing. As long as it doesn't involve the part that is actually hurting.


And other times, it does help to touch the part that is hurting, although with nerve pain like I had last night, that was not the case. So how does he know? He asks me. And I am direct in telling him. And it works. And it works when he gets out of bed for the third time to get me the Motrin I forgot to take when I was up the previous time. And it works when he distracts me with ridiculous jokes or stories.

He also listens intently to what I am saying about my pain experience, if I even want to talk about it which if I don't, we have quiet time. When I talk about it, and he listens, he helps me figure out what the best course of action to take. For example last night, I was trying to decide if I should go ahead and take the pain medication because if I did, I would also have to take something to help me sleep. Otherwise the lack of sleep would worsen the pain cycle. However my husband knows that I am very careful about taking possibly addictive substances like this too often. He helps me think it through out loud to determine if yes, this is necessary or no, I can wait it out and see what happens. Last night, it was necessary.

Its not easy loving someone with a chronic illness.It takes an incredible amount of love and dedication to live this lifestyle each and every day with someone. One thing that I know has helped my husband is that he attends SSF support groups with me. Not only does it give him an opportunity to hear what it is like for other people to live with my illness, but it gives him a chance to talk to other partners, spouses, and caregivers about their experiences. At the last support group meeting we went to, he mentioned to me, after talking with other spouses, that he didn't realize how many Sjögren's patients also have a difficult time going out in the evening because by 6pm or so, they are ready for bed. Going out in the evening is a very difficult thing for my husband and I because I am absolutely exhausted and ready for bed. It takes a lot of preparation and pre-planning on my part to get myself out of the house in the evening. And, a lot of rest beforehand. Because he is aware of that, he makes sure to consult with me about activities, especially ones that just involve the two of us. For example, we don't go to the 8pm showing of a movie. You will instead find us at the 1 or 2pm matinee, where by the way, we save a ton of money going to an earlier show!

I used to feel guilty about the effects my illness has on my husband. I think I even blogged about that very topic at one point. I no longer feel that way though. And the reason for that is simple:

I no longer let my illness define every aspect of my life.
At least most days.
And together, we have established and defined what our normal consists of.

And with the help of his love, I have come to understand that yes, life is more challenging for us than for many other couples, but despite that, I have just as much to offer a partner as anyone else. Throughout all this, all my husband asks from me, both on my good days and on my bad ones, is that I love him.

And I do.
Completely, and without reservation.

And that makes every single day worth fighting for.

Thursday, March 5, 2015

Sjögren's and Fatigue

A few days ago, I posted a status update on the Thoughts and Ramblings Facebook page asking those with Sjögren's/chronic illness if they could pick just one symptom to get rid of for the rest of their lives, what would it be. I knew what the answer would be for me, which was going to be the basis for this blog entry, but I wanted to see if others with Sjögren's felt the same way.

I was taken aback by how many responses I received with that poll and it was clear to me by the responses that fatigue was the clear winner; which is also the case for me. That relentless, brain-numbing fatigue that most people without a chronic illness typically cannot understand.

There was an article put out by the Sjögren's Syndrome Foundation last year that for the first time I have read, did an excellent job of describing the different types of fatigue encountered by those of us with Sjögren's syndrome. The title of the article was: 13 Types of Sjögren's Fatigue by Teri Rumpf, PhD. The article does and excellent job and you can read it by clicking on the article title link above.

For me, as for so many of us, the Sjögren's related fatigue that comes with this illness is often the most debilitating symptom we have to deal with, day after day, week after week. It affects every single aspect of our lives and even worse, fatigue is often misunderstood not only by the other people in our lives, but also by our medical providers. It is one of those invisible illness symptoms that is usually not outwardly obvious to other people. Or on the flip side of it, people think they do understand what the fatigue is like because they too have experienced "tiredness."

I'm here to tell you that illness related fatigue is nothing like being tired.

I remember the days, before I became ill, when I worked as a registered nurse on a busy pediatric nurse, often on my feet for most of my twelve (more like thirteen-fourteen) hour shift and then commuting an hour each way to work. I remember the years I worked the night shift and could barely remember my drives home because I was that tired. Exhausted is probably a better word.

But fatigue is different for me than tiredness or exhaustion.It is that feeling that I physically cannot take another step, even if my life depended on it. Sometimes it is predictable and sometimes it is not. An example of this is that if I work two consecutive days at my current job, it is pretty much guaranteed that sometime in the following forty-eight hours, the fatigue will consume me. That is predictable.

An unpredictable example is going out with friends on a weekend evening, which happened to me recently. I had made sure I got enough rest for twenty-four hours before we went out. I was in good shape for the first few hours, but halfway through a concert, at an intermission, the fatigue hit me like a freight train and I almost actually fell asleep during the intermission while sitting in my chair! I really thought I had my bases covered, but that night, the fatigue won.

And that's the problem, many times the fatigue does win. It very much affects my work life, what little I do have of one. It affects all my personal relationships and definitely my social life. And, it is frustrating as all hell. Because when you are fatigued, everything else is worse and I mean everything. It impacts my pain levels, my other physical symptoms, and definitely my ability to cope. It contributes to anxiety and depression and overall can cause a feeling of hopelessness.

I would say that fatigue is probably the issue I have had to work the hardest at and it has taken me the better part of the last seven years to do so. Working on it doesn't mean I can get rid of it, but it does mean that I am able to live better with it and improve the quality of my life. It means that even though I hate it with a passion, it does not always win. And the times it does, it does and I move on.

There are a few strategies that I have used to help me manage my fatigue more effectively. One of the most important is planning ahead of time and prioritizing. Planning meaning not just my activities, but my rest as well. That is hard for me because when I am feeling less fatigued, I want to get as much done as possible. However I have found that for me, the fatigue is cumulative and rest periods every day are critical in managing it.

Another important component to managing my fatigue is diet and exercise. I cannot emphasize this enough. And oftentimes, I need to emphasize this even with myself because it is an area that I can easily neglect. I have found a significant improvement in my fatigue levels when I exercise three to five times a week and cut out processed sugar, gluten, and processed foods. The exercise doesn't even have to be much, maybe a fifteen minute walk or a half hour of gentle stretching. I just have to move my body.

I also need to listen to the fatigue. When its here, its here. Yes, there are some things I have to push through, like finishing a shift at work. But otherwise, I listen to my body and give it the rest it is screaming for. I find that most times when I do this, I recover more quickly than if I did not listen to my body and kept barreling through my day.

Lately, my fatigue has been more manageable for me and while I know that how I manage it is a crucial component, I have also been finding some relief lately since being on a steady dose of low-dose naltrexone (LDN) and increasing one of my thyroid medications. I always encourage people to talk to their doctors about checking their thyroid and also exploring any other possible causes of fatigue such as adrenal exhaustion, etc.

What techniques and management strategies have you used to help manage your illness related fatigue?

Sunday, March 1, 2015

Sjögren's and Interstitial Cystitis

Several years ago, in 2012, I began to have some issues that confused the heck out of me. I was having some urinary symptoms such as feeling like I had to go all the time, lower pelvic pain, and oftentimes feeling like I could not quite empty my bladder. These symptoms would wax and wane and were episodic in nature. I would go to the doctor and often, I would get treated for a urinary tract infection (UTI), even though my urine sample was always negative. However the symptoms I was experiencing seemed like they were classic UTI symptoms.

Around the time of my wedding in Spring 2013, the symptoms were acting up, but it was the months between my wedding and honeymoon that were the worse. The pain was relentless and had actually become crippling at times, I constantly felt like I had to urinate. During this time I saw a urologist in western Massachusetts. I had found some information in The Sjögren's Book by Daniel Wallace which pointed to the suspicion that my symptoms may be related to something called Interstitial Cystitis (IC). The doctor's appointment was a nightmare. He insisted that this was not the issue and furthermore, IC is not at all related to Sjögren's syndrome.

Well, things were getting worse by the week and I realized that I couldn't go back to that doctor and I needed help. I did my own research and ended up in the urology clinic at Lahey Clinic in Burlington, Massachusetts. These doctors were top notch in the urology world and by the end of the first visit, they told me I likely had IC. As an aside, I highly recommend Lahey Clinic and this was also a perfect example of how important it is to advocate for your own health care. They put me on a bladder medication and had me radically change my diet to avoid foods with high acid content, as that can make IC much worse. I got no relief from the medication and minimal relief from the diet.

One month before my honeymoon, they brought me to the operating room and did a procedure called a hydrodistention with cystoscopy. Typically, you can see an indication of IC during this procedure and although the doctor did not necessarily see what he was looking for in terms of diseased areas, they went ahead and did the hydrodistension part of the procedure to flush away any inflammatory cells that may be present.

I did unbelievably well with the procedure and my symptoms disappeared. Since that procedure in August 2013, I have had a few very minor pain flare-ups with my bladder, but I can always correlate it with an increase in acid in my diet. As soon as I fix that, I am good. I am firmly convinced that  the Lahey Clinic they did was what got me on the road to recovery and since then, I have tried to be very vocal about the possibility of having IC with Sjögren's so that more Sjögren's patients like me don't suffer more than they need to. Especially since that first urologist I saw was so uneducated and uninformed.

I was delighted to open up the February 2015 Moisture Seekers newsletter last week to see an article about Interstitial Cystitis. Because the article is so well done, I am going to reprint it below for your information:

Intersitial Cystitis (also known as IC) is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, urinary frequency (needing to go often) and urgency (a strong need to go). IC also can be referred to as painful bladder syndrome (PBS) and chronic pelvic pain (CPP). The exact cause is unknown, but researchers have identified different factors that may contribute to the development of the condition.

About 25% of IC pateints have a definite or probably diagnosis of Sjögren's and as many as 14% of Sjögren's patients are estimated to have IC.

Some things you can do to control your IC include:

1. Avoid or limit foods and beverages that may irritate the bladder, including coffee, tea, soda, alcohol, citrus juices, and cranberry juice. For some, spicy foods may be a problem as well as foods and beverages containing artificial sweeteners.

2. Apply heat or cold over the bladder or between the legs to alleviate some pain.

3. Modify or stop Kegal exercises which may make pelvic floor muscles even tighter.

4. Avoid tight clothing to prevent further irritatiion and restricted blood flow to the pelvic region.

5. Treat constipation.

6. Develop healthy sleep habits as sleep is crucial for pain control.

7. Adjust fluid intake. Increase or decrease depending on your situation.

8. Retrain your bladder by learning to urinate on a set schedule and not when your bladder tells you.

9. Find healthy ways to manage your stress since it may make IC symptoms worse.

10. Find, in advance, the locations of restrooms along your route when traveling.

11. Get active! The health of the bladder depends on good blood flow to the area and having flexible and strong muscles around your bladder and other pelvic organs to protect and support them.

12. Quit smoking. Cigarettes may irritate the bladder and worsen the pelvic and bladder pain.

13. Take a trial and error approach to treatment as no one treatment works for everyone. A combination of treatments is often necessary to get your IC under control.

14. Track how your symptoms change with treatment and speak with your healthcare provider if you think a therapy is not working.

Visit the Interstitial Cystitis Association website at www.ichelp.org for the most up-to-date and accurate information about IC and to find knowledgeable healthcare providers.

******Reprinted from The Moisture Seekers, Volume 33, Issue 2, February 2015.*****