Wednesday, March 11, 2015

Loving Someone With A Chronic Illness


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


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


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


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


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


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


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


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


Sometimes.


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


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


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


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


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


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


And I do.
Completely, and without reservation.


And that makes every single day worth fighting for.








Thursday, March 5, 2015

Sjögren's and Fatigue


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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




Sunday, March 1, 2015

Sjögren's and Interstitial Cystitis


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


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


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


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


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


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



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


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


Some things you can do to control your IC include:


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

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

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

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

5. Treat constipation.

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

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

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

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

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

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

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

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

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


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


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