Friday, February 5, 2016

New Sjögren's Medication Study

If you have Sjögren's syndrome, or know somebody who does, this is a must read.

I see an oral medicine doctor, Dr. Athena Papas, at Tufts University School of Dental Medicine in Boston. She has been an invaluable part of my medical team in treating and managing the oral complications I have from Sjögren's syndrome, the most important of which has been removing salivary stones from my glands in a non-invasive manner. Since I started seeing her, I have not had one gland infection or permanent blockage.

A while back, she mentioned to me that she is heading up a study to test a potential new Sjögren's medication. At my visit this week, she gave me the eighteen page document she gives to prospective new participants. I am not going to rewrite the entire document, but I am going to try and present to you the highlights of the document because my understanding is the investigating group is still looking for study volunteers. According to Dr. Papas, I do not qualify for the study, but I am publishing this in case any of you may qualify. I will provide the contact information at the end. And yes, I have permission to share this information.

This study is a multi-center, randomized, double-blind, placebo-controlled, parallel group study to assess the safety, tolerability, pharmacokinetics, and preliminary efficacy of a new biologic medication currently called CFZ533 in patients with primary Sjögren's syndrome. The principal investigator is Athena Papas, DMD, PhD. Co-investigators are Britta E. Magnunson, DMD, Arwa M. Farag, BDS, DSSc, and Mabi L. Singh, BDS, MS, DMD. The study site is Tufts University School of Dental Medicine in Boston, Massachusetts. The project is being sponsored by Novartis Institutes for BioMedical Research.

The study is being conducted  to test an experimental drug for primary Sjögren's syndrome (pSS) with the current name of CFZ533. The goal of the study is to see if the medication is well tolerated and if it has a positive effect on Sjogren's syndrome (SS). The study involves taking multiple doses given by intravenous infusion. Thirty subjects will be enrolled. The goal is for a total of forty-two subjects to complete the study across ALL study sites. There are twelve study centers planned in the United Kingdom, Hungary, Switzerland, and in the United States. More study centers may participate in the study later.

This is the first time CFZ533 will be tested in subjects with pSS, but it is not the first time that the drug has been given to humans. As of December 15, 2014, forty-eight healthy volunteers and six patients with rheumatoid arthritis have been given intravenous or subcutaneous injection of CFZ533 in the clinical trial. Overall, there have been no abnormal lab results and the drug was tolerated well.

The following is is a summary of the requirements to participate in this study:

* Must be between the ages of 18-75 with a confirmed diagnosis of PRIMARY Sjögren's syndrome. Must weigh between 110-330 pounds.
* If you are on glucocorticoid treatment (i.e. steroids), the dose may not exceed 10 mg (or equivalent) per day and must be at a stable level for at least two weeks before starting the study and for the duration of the entire study.
* If on Plaquenil, the dose must be stable for at least four weeks before officially starting the study and for the duration of the study.
* If being treated with methotrexate, the dose may not exceed 25 mg per week for at least three months before officially starting the study and for the duration.
* Vaccines must be up-to-date.
* Cannot have a confirmed diagnosis of Seconday Sjögren's syndrome.
* May not be using other investigational drugs or have a history of hypersensitivity to the study drug or to drugs with a similar chemical makeup. Cannot be on medications that are known to cause dry mouth and cannot be a person at risk for thromboembolic events.
* Cannot be pregnant or nursing
* Cannot have donated blood or had significant blood loss in the past eight weeks.
* Cannot participate if you have a pancreatic injury or pancreatitis, have the presence of a medically significant heart condition, have experienced a systemic infection within thirty days of starting the study, have a condition that puts you at a higher risk of infection or have a history of tuberculosis.

If you have received any of the following treatments, you cannot participate in the study:

* Cyclosphosphamide within six months.
* Corticosteroid bolus I.V. >1mg/kg within three months.
* Rituximab within twelve months.
* Belimumab within six months
* Any other biologic within one month or five times the half-life. A biologic is a medication that is created using human genes. They are designed to restrain certain parts of the immune system that cause inflammation. Half-life is the amount of time taken for the concentration of the biologic to decrease in the body by half.
* Any other immunosuppressive such as cyclosporine A or mycophenolate within three months.

Are you still with me here?? Whew, that's a lot of information. I need a lunch break....

OK, I'm back. I took quite a bit of time to explain the study in order to give the reader a better idea if he/she qualifies for the study. I know a lot of this information is technical, so if you are unsure if you would qualify, definitely call the number at the end of this entry and speak to someone.

I am not going to be as detailed about the procedure of the study because it is quite extensive, but I will summarize what I think are the important points.

The study is comprised of fifteen visits. The study takes approximately nine week (thirty-six months) total. It is broken down into three study periods:

1. Placebo-controlled period. Four doses of either the experimental drug or a placebo will be administered in addition to the standard of care therapy for treating pSS. You will not know if you are receiving the actual drug or a placebo. A placebo is a substance that has no therapeutic effect. Placebos are used as a control component to test the effectiveness of the study drug and determine whether the delivery circumstance of the study drug has an effect as well.

2. Open-label period. All study subjects will receive four doses of the experimental drug.

3. Follow-up period. Subjects will be followed up without study drug.

Some other key points for the study:

* The first two visits are for screening and collecting baseline information.
* Your salivary flow and eye dryness will be measured (noninvasive). If you have not yet had a salivary gland biopsy, that will be required (invasive).
* Blood samples will be taken during the study.
* As with any study or medication, there are risks. Examples of this include allergic reaction, increased risk of infection, blood clotting, etc.
* Female participants who are sexually active, and are able to get pregnant, must follow strict guidelines regarding birth control. Details available before starting the study.

There are benefits to being a part of this study. You will receive medical care during the study. There is some scientific evidence showing that blocking CD40 by CFZ533 may have therapeutic efficacy in pSS, however the benefits of CFZ533 are not established and should not be considered fact. Information from this study may help you and/or other people with pSS in the future.

All subject records will use numbers and/or initials and be de-identified. Only study personnel will have access to the locked storage area where these files will be kept. All study personnel will be required to follow HIPAA guidelines.

There is no cost to participate in the study. You will not be charged for the study drug or any of the tests/procedures performed. Expenses, such as transportation, are your responsibility at all times. You will be paid for taking part in the study. This is to compensate the subject for their time. Each study visit has a $200 value assigned to it, so total compensation to complete all fifteen visits will be $3000. This is taxable income and you will be required to complete a W-9 form. Payments will be made after completion of each study visit.

If you are interested in learning more about this important study and/or would like to participate, please contact Elizabeth Tzavaras at (617) 636-3931. I would also encourage you to share this information/blog on any social media sites you are a member of, especially if you know other Sjögren's patients. If you are a blogger, especially if you are a medical blogger, I would encourage you to do the same. We have no cure for Sjögren's and as far as I am concerned, we don't even have decent treatment options. In order to get reliable and viable treatment options, we need research. Research requires study volunteers, so please spread the word!

Monday, February 1, 2016

Accepting Chronic Illness

I am tired.

For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it's a given.

But lately, my tiredness is more than physical. It's mental, emotional, and spiritual. It's the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren's, and the host of other medical issues, that have plagued me over the years.

Is it tiredness?
Or is it depression?
Or grief?

The label isn't important to me. Actually right now, there's not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self - the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.

There are also moments, hours even, where I can put on a smile and appear to the outside world as my usual self. I reserve my energy for this act when I am with people who really matter to me, because I cannot help but think that those precious people deserve so much better than a morose, down-in-the-dumps shell of a person.

Or at least I did think that. Now I am beginning to wonder, what would be so wrong with being myself all the time and letting people really see me? All of me. Why do so many of us feel this burning desire to pretend? To be who we are not in order to protect our loved ones? When you live with a chronic illness day in and day out,there is only so much energy to go around. Do we really want to waste any of it pretending we are fine when we are not??

Many of you know that last September, I started a new part-time job as a school nurse. It was my first venture working regularly since I went out on disability in 2008. I had been working as a substitute school nurse for about a year and a half and I wanted to push myself to advance to working part-time, fourteen hours a week. Surely that was manageable I thought.

It wasn't.

There were a lot of extenuating circumstances during my new employment. My gallbladder gave out on me and I suffered for months before I finally went in for surgery. I was also working towards my school nurse license, which took a lot of my energy and time. I was experiencing neurological symptoms and then a worsening of my pain and fatigue issues. For a variety of reasons, I found this new place of employment MUCH more stressful than my other job where I sub at. I enjoyed what I was doing at the part-time job, but the price I was paying physically was no longer manageable. Actually, it was never manageable. The only reason I made it all the way to January was because I was so damn determined to succeed.

That's really the root of the problem: my drive to succeed. After going out on disability, I spent YEARS trying to figure out how I could get back to work in some capacity. While out on disability, I started a blog and wrote a book. Some people would call that working but honestly, I do not make a living doing it. And then when I did start working out of the home (as a substitute school nurse), I spent even more energy figuring out how to work part-time on a regular basis. But that wasn't going to be my end point. I had a plan. I was going to gradually build up to being back in the workforce full-time, and nothing was going to stop me.

Especially not Sjögren's!

But it did. Despite a WONDERFUL three week run on prednisone around Christmastime, it all began to unravel for me physically and I made the decision to give my resignation with the caveat that I would still be interested in subbing at this school as well.

I was struggling so much in the weeks leading to my last day that when my last day came, I felt nothing but relief. However, I wasn't prepared for all the realizations that would come with leaving a job that I had worked so hard to get.

Looking back, it's obvious to me now that with my medical needs, this particular job was not the right match for me. But I also realized that no matter how hard I pushed and how badly I wanted to succeed, my illness was not going away. I think that a part of me thought that as long as I TRIED hard, it would all work out. My symptoms would become more manageable. I just needed to stay positive and optimistic. I just needed to do more self-care to make my work days more doable. I needed to have faith in God and then I would succeed.

That's the way I have always managed having Sjögren's syndrome: I stay upbeat and I always continue forward, constantly trying new treatments and working on ways to manage my symptoms. Be courageous. Be brave! Don't give up. Keep your chin up!

No longer.
Or at least, not right now.
Because I am so damn tired.
And oftentimes, chronic illness is just a bitch.

I have been living with Sjögren's for at least eight years now. I do what I'm supposed to do to manage my illness. I do what I NEED to do. So in some ways, I have accepted my illness. But I am now beginning to understand that I have not truly accepted my illness. Not really. I have still been clinging to the hope that I can overcome it and go back to living a life similar to the life I was living before those first symptoms appeared. Leaving my job has helped me to see that it is good to push your limits and to have goals, but there is also something to be said for accepting yourself for exactly where you are at in any given moment.

This brings me to now, this day. A day in which I woke up in the morning and the first thought I had was that I wish I hadn't woken up. Because lately, waking up means facing another day of challenges that drain the living hell out of me. I have to force myself to not snap at people. I cry at the drop of a hat. It's hard for me to be around people because they are not going to say what I need to hear. What do I need to hear? I need to hear that it is OK to be sad. It is OK to want to lie in bed all day and not want to do anything. Maybe not forever, but at least for a little while. I need to hear that it is OK to mourn the person I used to be. Because let's face it, that woman is gone. I don't want to hear that I can do anything I set my mind do because the reality is, I cannot. Maybe, at the end of the day, it's not so much about what I need to hear from other people, but rather, what I need to hear from myself.

Maybe acceptance and living with a chronic illness is less about being brave and more about being authentic. I think for me, true acceptance would mean being OK with where my body and mind are at on any given day, without judgement from that inner critic that says I need to be better. Or stronger. Acceptance would mean valuing what my body can do and not what I wish it could do. It would mean finding a way to live in a state of grace no matter what physical challenges lie in front of me.

Authenticity.
Acceptance.
Grace.



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.

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.