For Everything There is a Season

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

Category: autoimmune disease (Page 6 of 19)

Being Visible With An Invisible Illness

September 10, 2014 / / 2 Comments

This week is National Invisible Awareness Week and I figure it is as good a time as any to get back to writing since apparently, my last post was a month ago. I have no good excuses. Life has been busy, and I have been enjoying living it.

I won’t get into all the details about why I have been busy; some of it has been simply having fun and some of it has been being there for other people or personal obligations. Whatever the reason, the past week or two has been more of a struggle physically than I am comfortable with. That’s the thing about an invisible awareness: I struggle every single day, almost no exceptions. I have done a pretty good job at working those struggles into my life and accepting them, but the problem with that is, I appear completely fine most of the time on the outside. When in actuality, my body is falling apart bit by bit on the inside.

It’s a double-edged sword for most of living with an invisible illness. For example, I do not want to be known as or come across as a “sick person”. I try to take care not to complain too much on social media and I make a very noble effort to not cancel out on plans when I am not feeling well. However the problem with this is that people forget that I do have limitations. Because I am trying so hard to make the life I do have count for something and to not waste too many of my days, I even forget that I have limitations.

As I have written about previously, I went back to work last Spring in an attempt to get back into the nursing profession. I work in a school as a substitute school nurse and had the summer off. Once I am back to work, I absolutely have to back off on all non-work activities and watch my stress in order to avoid a flare-up in my symptoms. My experience with working thus far is that for every day I work, I need at least two days to recover. Between the joint pain, muscle pain, eye issues, fatigue, and brain fog, sometimes one day of work feels like three or four days. And to be honest, it is worth it. I enjoy being back to work that much.

That is a huge reason why I have been so busy lately; because I knew I would likely be getting called soon to go into work and I wanted to do some quality living before that happened. Not that I don’t enjoy myself the rest of the year but like I said, it needs to more limited and thought out.

So this past weekend, I knew I wasn’t doing all that great; the fatigue was overwhelming, to the point where I would cry in the car on the way home. And the fatigue felt much worse than what I’m used to and I knew something wasn’t right. But, I followed through with my commitments, had some fun along the way, and sure enough, all hell broke loose: migraines, sinus pain, ear pain, joint pain, and chills. I forced myself to go to my water aerobics class Monday morning and almost passed out. I started treating myself with decongestants, acupuncture and a neti-pot, with some relief, until my asthma acted up the worst it has in years, on Tuesday night. Two times using my rescue inhaler and I knew I was doctor bound first thing this morning.

What is wrong with me in itself is not a big deal. I have something viral (if I am not better by Friday, I go on antibiotics) that is affecting my sinuses and subsequently, my lungs, which were not moving as much air as they should be. Any type of infection always flares up my autoimmune symptoms, especially the fatigue, and it gets more complicated for me than for many other people. A steroid nasal spray and a steroid inhaler should hopefully fix me up quick. I am really hoping to stay off oral steroids as I just passed the six month mark of being off them and let me tell you, that is a rare occasion indeed. Granted, my life might be easier on them, but since I have already started to develop some minor long-term complications from them, they are a last resort.

To be honest, I wasn’t being as careful as I should have been. Not just because of my schedule, but because this time of year is ragweed season and I have a severe allergy. Despite my symptoms, I was depending on one allergy supplement (which apparently wasn’t managing things) and allergy shots, and hence the sinus/lung issues emerged. But isn’t that almost a good thing in a way? Instead of spending every day thinking, worrying, and dealing with every little physical symptom that crossed my path, me and my invisible illness were taking advantage of opportunities in a very visible world.

There is something very important I have learned from all this. Nope, it’s not about balancing your life with a chronic illness. Believe it or not, I already learned that lesson a while ago, even if I don’t get it right some of the time. I have learned that since I have to live with this illness the rest of my life, and most likely will not see a cure in my lifetime, that I have to make sure to do this one thing:

I have to live my life.
Now.

I have to take advantage of all the days where I can get out of bed more easily. I have to stop worrying about when the next big autoimmune crisis will come. I have to stop worrying about how clean my house is, especially when there is some better way to spend my precious energy. While I cannot ignore my illness, it is important for me to sometimes act “as if”…act as if I am not sick…act as if I can do anything. Because honestly, sometimes I think having this illness is more mental than physical. I see that in myself and I see it with others who battle this illness every day.

So if you are reading this and you do have some type of chronic illness, try to be more visible, Do something, anything. Educate people around you about your illness. Sit in a library and read a book rather than by yourself at home. Talk to people while you are waiting in line at the Social Security office. Take a risk and go away from home overnight without ruminating over all the “what ifs” that can happen.

If you are reading this and you do not have some type of chronic illness or health issue, I will admit, I am a bit jealous. I get especially jealous of people who are healthy physically and mentally and then don’t take advantage of their good fortune. Stop wasting time over the drama around you. Get outside. Volunteer to help those less fortunate.

Live!

Tarsal Tunnel and Plantar Fasciitis

August 3, 2014 / / 3 Comments

I have to say, I REALLY wish I wasn’t writing this post right now. But, I am, so I am going to suck it up and share my experience with you in the hope that maybe someone can benefit from it, or that you can provide information in the comments section that may be beneficial to myself or another reader.

As I have posted previously, I began running last October. Since then, running, training for races, and improving my physical strength has become a godsend to me in terms of managing stress and in actually improving my Sjögren’s symptoms. Yes, you read that right: running has improved my Sjögren’s symptoms. From some of the research I have read regarding increasing endorphin levels (think low-dose naltrexone), I believe it is the endorphins and other feel good hormones that I get from running which has accomplished this. My chronically arthritic knees have IMPROVED and I no longer experience inflammatory joint pain in my knees, ever. Not even when other joints flare up. I don’t think that is a coincidence and have read about how running, when done correctly, has improved arthritis in some individuals.

Sometime around the end of May, I noticed that I was having pain in both my heels, not so much when I was running, but with walking and standing. I ignored it for a week or two, despite it being a new symptom. However, the pain continued to worsen and I decided to cut back my running and did not sign up for any summer races. This worked out OK for me because running in the summer is too difficult for me with the heat, sun, and Sjögren’s. I was still running about twice a week, usually on the treadmill in the air conditioned gym or early in the morning.

Within a few weeks, I decided to stop running for about four weeks as I was concerned about the worsening pain and despite stretching and ice, it continued to not improve. I talked to my rheumatologist in July as I was concerned about how painful it was to even walk and I was also have some swelling and pain in other joints, specifically my hands and shoulders. I knew my diet had been lousy and i was under a lot of stress at that time, so I wanted to try and got those issues in check before resorting to medication. My rheumatologist wanted me back on a low dose of prednisone. I never started it because again, I wanted to see if I could manage my symptoms with other means. I have already begun to have minor steroid-induced long-term effects and although this was a low dose, I wanted to try and resolve the issues without the prednisone.

And I did. Except for the feet issue. I was on a different combination of herbs, I worked on my stress, and completely cleaned up my diet and my hand and shoulder issues resolved. My fatigue even improved. But the feet kept getting worse. I had told my doctor and her fellow that this was a new symptom for me and I was concerned about it. Something just didn’t feel right. Being told to just go back on prednisone didn’t seem like the right way to find out what the problem was.

I decided to consult with a podiatrist and was very grateful to have several friends recommend a local podiatrist, Dr. Tammie Black. It was going to be a while until my appointment, but I figured I would tough it out until then. I tried not to pay too much attention to the pain. I tried running again, but shorter distances and paid more attention to cross training to reduce the impact on my feet. That lasted a week. I then started experiencing numbness and tingling in both my feet on a daily basis. I called the podiatrist again. She had a cancellation and I got in a month sooner than I was supposed to.

Well, thank god for that!

This doctor was great. She did some xrays (which I had previously asked for from another doctor and never got) and checked me out. I told her all the things I was doing to manage my symptoms. After a full evaluation, she told me I had severe plantar fasciitis and tarsal tunnel. I have had plantar fasciitis once before in one foot and it did not really feel like the symptoms I was having, but after she explained to me how having both can work, I could see that she seemed right on with her diagnosis.

I was already wearing orthotics in my sneakers but the problem was, I only wore my sneakers for exercise and walking distances, like when on vacation. Also, I ALWAYS go barefoot in the house and as much as I can outdoors, which contributes quite a bit to the problem. She instructed me to always wear my sneakers or get a pair of shoes called Vionic, which have arch support built into them. I just ordered a pair today and cannot wait to try them out because I have found in the past several days that wearing my sneakers all the time, while helping initially, seems to be making the nerve pain on the inside of my heel much worse. She also gave me two exercises to start on and I start physical therapy in a few days.

Since I’ve had plantar fasciitis, I was already familiar with it, but not with tarsal tunnel, The doctor explained to me that it is similar to carpel tunnel, but in the feet. It is even more difficult than carpel tunnel to effectively treat. She is hoping that if we get the plantar fasciitis under control, that the tarsal tunnel will improve, but time will tell. I asked her about the prednisone my rheumatologist wanted me to take and she said that prednisone would only mask the issues and that as long as I don’t need it for my other Sjögren’s symtpoms, that it would be better for now to wait on it.

Of course, we don’t know for sure what has caused all of this. I figured the running may have something to do with it, but then I found out that autoimmune illness can as well. Sjögren’s syndrome being one of them. As stated in an article entitled Neurological Manifestations of Sjögren’s Syndrome by Dr. Stephen Mandel which you can read HERE, tarsal tunnel is a mononeuropathy that can occur with this illness. It can also occur in rheumatoid arthritis. But at this point, the bigger issue is not how it happened, but taking care of it now that it has happened.

It’s frustrating that’s for sure. My doctor made it very clear to me that even though she appreciates how much running means to me, if I want to get better (and not worse), running needs to be stopped. So much for the fall races I have planned. But I know she’s right. My husband and I were away for two days after my appointment and I cannot even tell you how difficult it was for me to walk or stand the time we were away. Pain and numbness were my constant companion. At the gym Friday morning, I went on the Arc Trainer and elliptical, as those have both proven invaluable to my exercise regime when my joints act up. But, the pressure on my feet was too much as was the resistance on the bike. So tomorrow I am going to try and do a water aerobics class because if I stop exercising completely, my joints and muscles will all go haywire.

It seems like, and I’m sure anyone who reads this blog regularly would agree, that it seems like it’s always something with me when it comes to my physical health, most of which can be attributed to this unrelenting autoimmune illness. But, like all the challenges I have faced, it is just one more obstacle to overcome and conquer…hopefully!

Birth Control, Mirena, and Me

July 2, 2014 / / 1 Comment

Sometimes a topic comes up that I am somewhat uncomfortable throwing out into the world wide web community, and this is one of them. However, I had to go in for a minor office procedure two days ago and I was extremely nervous about what to expect. A Google search of some other blogs gave me information that helped me quite a bit, and reminded me of the importance of blogging and why I write what I write.

On Monday, the very same day that the Supreme Court of the United States of America granted a for-profit company permission to withhold financial coverage for certain types of birth control from its female employees (including IUDs), I had my IUD removed.

That was a total coincidence.

Here’s the thing though. This blog is not about that decision because honestly, I want this blog entry to be more helpful than that. We all have our opinions about the case and trust me, mine is strong. But this blog is about women and the choices they make. The choices that impact their lives, their partner’s lives, and the children they may or may not have. So here is my story…

During my college years, I was put on birth control pills after I suffered through a ruptured ovarian cyst. It was not my first cyst and because of the rupture, I lost critical days of clinical experience during nursing school. Once I went on the pill, the cyst situation improved dramatically. I was not sexually active at the time I went on the pill, and never had been at that point. However once I was, I found the birth control pill to be a great piece of mind, as condoms are not exactly known to be foolproof.

I tried different types of birth control pills over the years as I had suffered from the side effects that many women deal with in the name of acting responsible. I stayed on it for years and years until I came off of it during my first marriage for a brief, and I mean VERY brief, attempt at becoming pregnant. I was back on it two months later. That’s a story for another day.

In 2004, while in this marriage, I experienced a blood clot in my leg. I underwent testing and was found to have a genetic clotting disorder called Factor V Leiden. At the time I developed the blood clot, I was dealing with a medical issue and was spending a lot of time in bed. The hormones in the pill were thought to be an aggravating factor in the development of the blood clot. The trifecta of the Factor V Leiden, being immobile, and the hormones in the pill almost caused me a death sentence. I was banned from birth control pills for the rest of my life, as well as all hormonal forms of birth control such as DepoProvera, etc.

So condoms it was.
That was fun.

Years went on and in 2008, I left and subsequently divorced my husband. At this time I was also dealing with a raging autoimmune disorder that left me disabled and I felt strongly that I needed to further push the birth control issue as being single, relying on condoms if I were to have a new partner, and having this many health issues was a very bad combination. And frankly, irresponsible as well. The issue was made more complex by the fact that my fertility was in question anyways due to Polycystic Ovarian Syndrome, so who even knows if I needed birth control. But since I hadn’t undergone testing fertility testing, I was playing it safe.

I spoke with my hematologist and gynecologist at length and I was presented with the option to have an IUD. I had two choices: a copper Paraguard IUD or a hormonal Mirena IUD. The suggestion was made that the Mirena might be better for me as the ParaGuard was known for causing heavier periods and I already battled that most of my life, but the Mirena can also cause ovarian cysts. I questioned the use of hormone (progestin) in the Mirena due to my clotting disorder. It was explained to me that because of the type of hormone and the location of the hormone in the uterus, rather than in my entire system, that it would not be an issue. The Mirena IUD had become the birth control method recommended to women with Factor V Leiden, as studies had shown that it did not cause an increased incidence of blood clots.

So in August 2009, I had the IUD placed. I was not thrilled about the idea of having something foreign put into my body, by my options were so limited. I was forewarned that insertion can be more difficult for women who have never been pregnant/given birth, but this was something I read online. I figured maybe some women exaggerated how bad the pain was. My (male) gynecologist at the time said it would just be like period cramps.

I no longer see that doctor.

It was bad.
Very bad.

I have never given birth, but I would have to say that the pain was probably comparable, just much shorter in duration. I have been through a lot of medical procedures, many of them unpleasant, and this ranks in the top three of most painful procedures. Then there was a lot of dizziness, I threw up while on the table, and my doctor told me I would be OK to drive home. I got twenty minutes into my drive and had to pull over because I thought I was going to pass out from the pain. I eventually made the last ten minutes of the drive home and loaded up on Percocet that I had left over from an ER visit months before.

The severe pain continued for two straight weeks and that was how long I was on Percocet. It took about two full months for me to get back to normal and then I was fine. I had called the doctor several times during this period because I was concerned that something was wrong with the IUD, but I was told that it just doesn’t agree with my body and that it will get better, which it did. I don’t want to scare women out of getting an IUD, but let me tell you, knowledge is power, Be prepared and don’t take the word of a male physician on how it feels to have a T-shaped object inserted into your uterus when nothing else has ever been placed in your uterus before. Ask for a medication to take beforehand and have someone drive you. My experience may not be typical, but better safe than sorry.

Life after that with the IUD was OK for the most part. I would get paranoid that I couldn’t find the strings which indicated if the IUD was in place. I did get a few cysts over the years, which I probably would have gotten anyways. My periods ceased. I never had to buy tampons. And when I entered my first post-divorce relationship, I was relieved to have it. At one point I was taking a very toxic autoimmune medication with a black box warning and was told that I could not risk, under any circumstances, getting pregnant. No problem. IUD in place.

As I mentioned, I was never really comfortable with the idea of having a device in me like that and this became more of an issue for me after a conversation with my acupuncturist when I started seeing him the first time around. The menstrual cycle is a big component in Chinese medicine, especially in relation to blood flow and energy. He never pushed me on the issue, because he is such a good practitioner, but he suggested I consider having it removed so that the work I was doing in acupuncture could be more effective for my autoimmune symptoms. Again, my options were limited, so in place it stayed.

Fast forward to 2013. I begin to have a lot of problems with my cycle.The Mirena has now been in place for almost four years. I originally thought it was stress related due to our wedding, but by the end of the year, the wedding was done and the cycles worsened. I spoke to my nurse practitioner, who I trust implicitly, and she told me since my Mirena was due to come out in August 2014, the symptoms were likely related to the fluctuations of hormones that the Mirena was producing.

I go from never having a period to having several a month. YES, SEVERAL A MONTH! Two words for that: raging bitch. Actually, that would be a bit extreme, but the hormone fluctuations were causing bad mood swings (mostly depression), bloating, cramping, you know, the usual. Plus, this made me concerned about the Mirena’s efficacy. If the hormone levels in the Mirena were changing that much to cause these symptoms, was there enough progestin in that sucker to do what it is supposed to do? I am 43 years old and I have several medical issues that would likely make a pregnancy life-threatening for me, not to mention threatening to an unborn child.

So this has left my husband and I with lots to talk about. The plan was to get through my BRCA testing because if that ended up being positive, I knew I would have my ovaries removed and it would be a resolved issue. I have not received those results and birth control is still an open discussion. However we both agreed that for right here, right now, it is not physically OK for me to have this current IUD in place, especially since the more hormone fluctuations I have, the worse my autoimmune symptoms get.

For women, especially women with health complications like me, there are no easy answers. However I am fortunate enough to have a supportive husband and an excellent health care practitioner. Yesterday, after days of major fear and anxiety, I had the IUD removed. This was the Google topic I was referring to at the beginning of this post. I was petrified to have this thing taken out after my harrowing insertion experience. But it went OK. I thought to take some pain medication AND Motrin beforehand. It was painful coming out (they are taking something out of your uterus after all), but it was so quick that I barely had time to react. I did have cramping on the way home and Motrin later on in the evening, but by the next morning, I was out for a run.

The aftermath of the removal has been as expected. My body and hormones have been altered for the past five years so all those periods I didn’t get the first four years? Yeah, they were getting saved up for now apparently. It sucks, but I am confident that in a few weeks or months, it will all even out. I’m sure my acupuncturist will be thrilled when I go in tomorrow and I am confident that she can do something to help get me through the next few weeks.

So with all this talk about women’s rights, court decisions, and birth control, at the same time that I have gone through this process this week, it has made me think about the Mirena and if I think it is a good form of birth control. If you Google search “Mirena complications”, you will be blown away by the lawsuits and issues that women have had with this form of contraception. You will see stories of women who love it. You will even read about how evangelical Christians think that using an IUD is abortion (for the record, based on the evidence, I do not). I will be honest, I LOVE the fact that this foreign piece of material is no longer in my body. I am even psyched that I have to go buy tampons for the first time in God knows how long, because it means that my body is doing what it is supposed to do. Even though I had the IUD placed AFTER I first experienced autoimmune symptoms, I am curious to see if anything with my health improves.

For a period of time, for me, the Mirena was the right choice. Besides never having sex, it was the only choice. I think it is easy for all of us to sit in judgment over each other and the choices we make, but we truly know little about the fine details and the decision making process that a woman must go through in regards to her health.

It is, after all, her body.

Finding My Way Back To Nursing

June 18, 2014 / / 4 Comments

My entire life I have have either wanted to be a nurse or have been a nurse. I don’t remember the exact time and place of when it became so apparent to me that this is one of the things I wanted to do with the rest of my life, but I do remember the desire being there from an early age. My mom is a registered nurse (RN) so from as far back as my toddler days, it was ingrained in me what a noble and worthy calling this profession is.

I graduated from UMASS Amherst in 1993 with my BSN and proceeded to work several different nursing jobs over the course of the next fifteen years. I worked on an inpatient adult psychiatric unit, I worked for a home care agency jumping around from the psychiatric specialty to adult medical surgical, and then finally, into maternal child health. My dream job came though in 1999 when I began working as a pediatric nurse at a children’s hospital. I would stay there for ten years, working on the same unit, day in and day out.

My last day of work there was November 8, 2008 and I was officially “let go” in March 2009. I use the term “let go” because I don’t know what else to call it. I wasn’t fired as I had done nothing wrong; I was an excellent nurse. I didn’t quit either. However, my autoimmune battle had been going on for over a year. I had used up all my sick and vacation time. I was on short-term disability, but since I had used up my allotted FMLA leave, which in Connecticut is a generous sixteen weeks, my job was no longer legally protected. So if you don’t think it can happen to you, trust me, it can. No job and no health insurance. I was fortunate to be making sixty percent of my income on short-term disability. When I asked if they could hold my spot at the hospital, I was told they could not because my position as an admission nurse needed to be filled to provide optimal patient care. I could reapply for a job in the future, but I would start all over as a new employee and I would lose my ten years of seniority in regards to my pay scale, etc. I found out later that my position was never filled.

Over the course of the next several years of battling Sjögren’s syndrome, I could not work at all, nevermind as an RN. I was devastated in 2010 when, while being evaluated for SSDI, a medical professional told me I would likely never work as an RN ever again.

Life over.

But as you all know, my life was not over. I became a writer and even though until very recently, I was not earning any income from it, it felt like a calling to me; in a different way from being a nurse. But, I always missed nursing. I didn’t miss working the 36-40 hours/week as I knew my body could not withstand that type of physical activity, no matter in what capacity. However as I started to learn ways to cope with my illness and as I found different alternative treatments to help manage my symptoms, I couldn’t help but wonder if someday, I could go back to doing some type of nursing again.

Around 2012, I started seriously investigating different types of nursing jobs and what kind of schedule I might be able to work once I was physically able to do so. I pretty much came to the conclusion that due to the unpredictability of my illness, working any type of set schedule would be impossible. Hence, partly why I was deemed permanently disabled by the government. But, I came to the conclusion that I was never going to let this be permanent. I was going to work someday, somehow, as a nurse again.

Between 2012-2014, I continued to work hard on getting some of my symptoms under control and by the end of 2013, I had made a decision that trying to find a job as a substitute school nurse may be the best path for me to take. I had never worked as a school nurse before and since the day I graduated nursing school, I have always wanted to. However back then, I needed the pediatric experience and then once I got that, due to personal circumstances, I found it impossible to leave my hospital salary for one of a school nurse. Now though, my situation was completely different and I had learned the hard way the importance of choosing happiness over money.

I started scouting local job postings with the intention of applying for a job starting in the fall of 2014. However with all the hoopla of Tales from the Dry Side being published and all the marketing I had to do, it made me realize that I was ready now to embark on this challenge. I was physically ready to take on the responsibility, or at least try. I had also been scouting local school websites because I was looking for a smaller school district. It had been 5 1/2 years since I had worked and I didn’t want to overwhelm myself, especially since stress is the fastest way to aggravate my symptoms.

I came across the website for a small town adjacent to the one I live in and it said they were always accepting applicants for sub nurses. It was interesting that I found this the same day that I was going to apply at two other school systems. I called, spoke with the nurse leader, and scheduled an interview.

I never sent in my applications to the other two school districts.

I knew within five minutes of my interview that this was the place for me. I cannot quite put my finger on it, but I loved my supervisor and I met one of the school nurses, who happened to be a former co-worker of mine from my former home care days. Seemed like it was meant to be I guess you could say. I was hired and finally employed after 5/12 long years.

I had three days of orientation, working in each school with the regular nurse. After that, my schedule varied. Although I am a sub, I often get pre-scheduled for days when I don’t have medical appointments, etc. I probably average about three-five days a month between the three schools and that is perfectly acceptable to me. Once in a while I will get a last minute call to come in and work, just as any other substitute does. I have learned to start scheduling my medical appointment first thing in the morning or late in the afternoon so that i can be more available for these last minute calls, but it is still a work in progress.

Going back to work has been one of the best things I have ever done for my illness. It has also been one of the hardest. The rumors about a school nurse job being easy are completely untrue. They work hard. I work hard. First off, as I mentioned, I have never been a school nurse and it is a completely different animal than any other type of nursing. My acute care experience has been a huge asset to me and I was surprised, after so much time, how easily it came back to me. However your approach is very different. These are not sick kids coming onto your turf so to speak. They are relatively healthy kids and you are in their environment. Granted, there are some kids with chronic illnesses that have special needs, but still, it is very different.

The change in nursing specialties has meant a lot of time online researching situations that I am not as familiar with. It has been a big learning curve for me and with that, has come some stress and anxiety. Trying to retain all this new information and learning the ropes for three different schools in a short amount of time is exhausting when you already experience unusual fatigue on a daily basis, as well as pain, issues with your eyes, etc. My days at work are very unpredictable. Sometimes I feel like I am running a walk-in clinic or a little mini-emergency room and I need to be on my game. There have been days where I have woken up and checked in with myself because of how lousy I feel. The question I have to ask is: will this just be very hard for me or will I not be a good nurse today? So far the answer has always been: it will just be very hard for me. I have continued to be the incredible nurse I have always been, disability and all.

So how do I do it? How do I move past the pain, fatigue, eye issues, organ complications, etc. to physically get through a 6 1/2-7 hour day? Well to start with, I am a substitute. Going back to work has made me realize that although I am striving for a goal of being able to regularly work part-time, I don’t ever see myself working full-time. It takes a lot of preparation and recovery for me to work one or two days in a week and I do look forward to the weeks where I don’t work at all because my body needs a break. Besides medical appointments, nothing else gets scheduled during the week, and sometimes that even includes weekends, if I know that I will be working. I always make sure that I have appropriate lunch foods ready to go in the fridge and clothes ironed in my closet in case I get called. I have gotten myself on a regular sleep schedule of 10pm-6am, which actually has done a lot for my insomnia.

Since I usually have a heads up for when I am going to work, I do nothing but rest most of the day before and it usually takes me one-two days to recover. It has meant missing out on some social activities, especially in the evening. If I happen to work back to back days, which does happen from time to time, my whole week is devoted to just work, making meals, and rest. I keep waiting for it to get easier for me physically. Stress wise, it has gotten much easier since I am now comfortable with each school, and have started to get to know the kids and how things work. But the physical aspect is a whole different story. I do not exaggerate when I say that I typically come home from work, let the dog out, change my clothes, go to the bathroom, and collapse into my bed for the rest of the day. I always have dinner prepared in advance or my husband knows he is in charge of dinner that night.

I also am able to work because I have a strong support system. My fellow nurses are such a great group of people, my supervisor is incredibly supportive, and I feel like it is a team environment. I have friends and family who keep cheering me in, especially in that first month when I was trying to get my body to adjust to being out in the workforce again after so many years away. I have this fantastic husband who rubs all my aching joints, makes sure we have clean underwear during weeks that exhaust me, serves me supper in bed, and tells me how proud he is of me. It all truly does make a difference.

I think probably the most important factor in how I get through my work days and why I keep working is this one simple fact: I absolutely love my job. Like head-over-heels love my job. I remember the first time I walked into the elementary school for my interview (I have never had kids in school!), looked around, and felt like a school was the best place in the world to be. So much learning, so much potential, so much LIFE! I love working with kids in a school environment; so many challenges and ever-evolving. I enjoy the different challenges in caring for a kindergartner versus a senior high school student. I love being able to help them manage their medical needs in order to maximize their learning potential. I love soothing a scared child. I love the one on one interactions that so often got neglected when working in the hospital. I enjoy the unpredictability of my day. I love knowing that I make a difference.

This job has ended up being so much more for me than a once a week or so obligation. It has been a chance for me to care for children again, to use my brain and my analytical skills, to be a part of the rhythm of life again.

My last day of work this school year was yesterday, approximately four months after I started. I know I don’t work forty hours a week, but I made it to the end of the school year without one sick day, although yesterday was a very close call! I am proud of that fact. For me, it is an indicator of how far I have come and the potential for how far I may be able to go.

So, happy summer to all!

Crossing the Finish Line

March 25, 2014 / / 4 Comments

This past Saturday was an event I have been preparing for over the past five and a half months, since I started running last October: the Holyoke St. Patrick’s Road Race. 6.2 miles. 2 1/2 miles of it uphill. And, they are big hills!

This is a bit of a race report mixed with my observations on what it is like to do this type of event. I don’t know the specifics of how large other races are, but this particular race had a lot of people, reportedly over 7,000 runners. Somewhat intimidating to me. As I have mentioned in a previous blog entry, my husband was running the race by himself and my friend, Heather, and I were running together. It was such an incredible experience that it has taken me a few days to get my thoughts together before I write them down.

The City of Holyoke, Massachusetts takes St. Patrick’s Day seriously. The parade, which is the day after the road race, is one of the biggest in the country, maybe even the biggest. So of course, the road race is a big deal as well. People dress up in green clothes, costumes, and all kinds of other garb for the event. We were no exception. That is the reason I have pushed so hard, as a new runner, to try and get myself ready for this year’s race, rather than waiting a whole year to compete. The race is just fun. While I have been training consistently, I knew another year might have made a big difference in the difficulty of running this race for me. However being as inpatient as I can be, and honestly, none of us knows what can happen in another year, I knew I had to attempt the race this year.

We got to the race area pretty early because of the high volume of traffic and people who were expected to be in attendance. Because for as many runners as there were (there was also a walk), there was probably just as many spectators lining the streets. After about two plus hours of waiting, stretching, and waiting some more, my husband went to his starting line up position and Heather and I went to ours, in the very back. This year, the race was starting in waves and we were going to be the last group, besides the walkers, to depart from the starting line. There was definitely a feeling of excitement as we heard the gun go off, indicating that the first wave of runners was on the move.

Heather and I had a plan to start the race walking for a few minutes, mostly because at my last race, I panicked and started off much too fast, causing me to have a difficult time. The other part of our plan, since we are run/walkers, was to speed walk the hills and run as much of the rest as possible. As we started off across the start line, I was shocked by the amount of people lining the barricades, rows and rows deep. I started to get a little panicky having all these people watching me.

After a very brief walk, we did start running. I tried to not be too conscious about how far back we were. I just kept reminding myself that pacing myself was the key to us crossing the finish line. However, it was hard to ignore the ambulance that was very closely trailing behind us. Being someone who has so many medical struggles and has recently spent time in an ambulance, I found this a bit disconcerting. I just kept reminding myself, “pace yourself”, pace yourself.”

Since Heather and I have been training together for months, we have developed a good pattern of communication while running and I think that really paid off during the race. There were points where she was struggling more than me and other points, especially towards the end, where I was struggling more. But overall, we stuck with the plan and mile by mile, I realized that we were absolutely going to finish, and likely at a faster time than we thought. According to my running watch, we were averaging about a fifteen-seventeen minute/mile walk and about a twelve-fourteen minute/mile run. I had thought that if we finished the race in 1:40-1:45, I would be happy. Anything under that would be an even bigger accomplishment. By my calculations, we had a shot at finishing at about 1:30. We had discussed during one of our training runs that 1:30 would be the icing on the cake, so to speak.

The experience of this race is one that I will never forget. It definitely had its challenges: leg issues for Heather, a previous injury for me, nausea after my first water stop when I tried to drink water, and WAY too many hills! That all being said, overall, it wasn’t quite as difficult as my first race on New Year’s because I had more months of running behind me and the temperature was at least  thirty degrees warmer. My family turned out to cheer us on at two different spots along the race course and it is still amazing to me how many complete strangers cheered us on along the way. I’m not talking about cheering statements like “keep going”, but rather comments like: ” you can do this….you’re almost there…you SO got this…last hill.” Comments that actually spurred us on when things got tough. There were people on their front lawns playing bagpipes, Irish music being blasted from people’s homes, and LOTS of clapping and yelling. The kinds of things you need when doing your first 10K race.

The three of us did finish the race. My husband came in at just under an hour (59:57) which was fantastic for his first 10K. When Heather and I turned the last corner to head towards the finish line, it was all I could do to keep moving and not only was I moving, but I was running. I made a promise to myself when I started running, that I would NEVER walk across a finish line. No matter how difficult running is for me or how tough a race is, I would always run my last quarter mile. I would always be a strong finisher.

It felt quite surreal when Heather pointed out how close we were to the finish line. As we got closer, we heard the announcer say our names on the loudspeaker.That is the advantage to finishing towards the end of a race, we heard our names announced because we weren’t in a pack with a bunch of another people…it was just her and I. Usually the only time my name is ever announced, I am in a medical appointment waiting room. This was a nice change of pace!

Right before we crossed, I looked up at the time: 1:40. I was slightly disappointed, although I shouldn’t have been. But I did think we had done a little better than that. It didn’t matter though. We had finished. I, a person with a life-altering chronic illness, had accomplished something that I never before thought possible, even when I was healthier.

The three us spent some time in Holyoke rewarding ourselves with some hard-earned beers (not the gluten-free variety, either) and during that time, I got a text message. The company that monitored the race, Racewire, texts your time after the race. I never even knew that was going to happen. And then, a sudden realization hit when as I was reading the text. Our 1:40 time on the finish line screen did not account for the fact that we were in the last wave of runners to start, delaying us by about ten minutes. Our actual finish time was 1:30:56! We did achieve what I previously thought was unattainable. Was a 1:30 finish time a remarkable feat in the world of competitive racing? Not by any means and I know that. But that doesn’t change the fact that for us, it was truly a remarkable feat.

The aftermath of running the 10K has been difficult for me; a lot of it has been ignorance and neglect on my part in post-race recovery. More of it has been my usual daily physical struggles exacerbated by putting my body through an unusual physical challenge. And finally, part of it has been a nagging leg injury that is totally ticked off at me for running all those miles. But as uncomfortable as I am, it still doesn’t feel as bad as my worse day as a Sjögren’s patient because mentally, I am stronger and I feel like I have accomplished something that I was never supposed to do.

My only question now is: when is the next race?

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