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

Category: autoimmune disease (Page 19 of 19)

The Prednisone Wall

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”

~ Michael Jordan

I am staring up a giant wall that I like to call the prednisone wall. For any of you who may not be familiar with prednisone, let me elaborate. It is a medication called a steroid used to treat a variety of medical disorders including asthma, arthritis, inflammatory bowel disease; basically any type of disease that involves inflammation. It is a blessing and it is a curse. It can save your life and when not used properly, it can kill you. Prednisone is one of the least expensive medications I can get my hands on, but it comes with quite a scary list of risks and side effects, including but not limited to: diabetes, depression, insomnia, memory loss, ulcers, bones loss, cataracts, life-threatening infections, the list goes on and on. You know how when you get your prescription filled at the pharmacy and it comes with the medication fact sheet listing all the possible side effects? Yeah, well the problem with prednisone is that if you are on it long enough or often enough, you WILL get those nasty long term complications they warn you about. Guaranteed.

I have been on and off prednisone at least ten times in the past two and a half years for an autoimmune disorder. Sometimes it has a course of five days but more often than not, the course has run at least four to six weeks; sometimes even months. I have never in my life had the type of love-hate relationship with anyone or anything that I do with this medication. It has helped relieve joint pain that was so severe that I wished I was dead. It has helped me to breathe. It has relieved inflammation in my sinuses and in my stomach, allowing me to eat normally again. It has been my lifesaver.

It has also been my curse. I have been on it enough times now that I am better prepared for what will probably come in terms of side effects; although every time does seem to be a little different depending on the dose and how long I am on it. Until four days ago, I was off it for six whole months; a record for me. However my rheumatologist and I agreed that it was time to go back on it due to the possibility that I have autoimmune induced hearing loss and the need to try and prevent further complications until I am evaluated by an ear specialist. It was also time to try and settle down some other symptoms that just were not getting better on their own.

So, today is day four. Although the insomnia has not been a major issue this time around, the hunger and food cravings were in full force over the weekend. If you’ve never experienced prednisone, you don’t know what you’re missing. You eat a full meal and thirty minutes later you are starving. All you want is sugar, refined carbohydrates, anything bad for you. No exaggeration, I could eat a full meal every two hours and still be hungry. I could sit down for dinner and eat a whole large pizza by myself. And half a loaf of garlic bread. And a plate of brownies. I would still be hungry in two hours after this elaborate feast. Food is all I can think about when I first start prednisone. I made the decision before I took that first pill four days ago that I was just going to do the best I could the first 48-72 hours. If I was hungry, I was going to eat all the calories I was hungry for while trying to keep it somewhat healthy (that kind of worked…a little). Usually after that period, the hunger and cravings settle down. I was going to cut myself some slack and that I did. I got as much exercise as I could as well.

The prednisone wall also makes me jumpy and restless; another issue that usually settles down within 72 hours. The slightest amount of stress can set me off and I feel like I just want to jump out of my skin. It used to get so bad, that I would have to take anti-anxiety medication for it…or drink lots of alcohol…or both. But I can’t do that now. I have worked too hard to get myself healthy to be throwing all that junk in my body! So instead, I am resorting to every self-care and anxiety relieving technique I have ever learned. Surprising result: they work. The trick is to listen to your body, know when you need to step back and rebalance. Then figure out what works. For me, it usually means time alone at home, with low lights, candles going, no TV or excess stimulation at all. I take a hot shower and then surround myself with things I love (and that don’t talk to me!) such as books, magazines, scented lotions, etc. It is about changing the environment.

My last hurdle to get over the prednisone wall is the crazy ass mood swings that it produces. I know this issue is not exclusive to me, but it can be a nightmare. It is also an issue that can settle down quite a bit after the first 72 hours, but then resurface the second the doctor decides to start weaning me off the medication. I am not talking the “weep a little while you watch Lifetime” mood swings. More like one minute I am having a very rational discussion with my boyfriend and the next minute, I am crying uncontrollably; for no reason. There is no rhyme or reason. It requires a lot of explaining on my part which is hard when I just want to curl up in a ball and cry. I am much more impatient and easy to anger. I can be difficult to be around which is now even harder because I am not living alone. In essence, I am not me. However I have found the best way to deal with this is to be upfront with people about the medication and keep myself out of situations that will get me into trouble, so to speak. If I am having a particularly difficult day with the crying, I just hole myself up in my house and let myself cry, instead of trying to fight it all day. Instead of struggling and feeling guilty, I stay home and take care of myself until I can get through to the other side. The other side does come.
These are all hurdles that one little tiny pill throws in front of me every time we get back together…the one that I love and I hate so much. I have discovered a lot about the ways I can climb the prednisone wall instead of giving up and just letting the medication control me. Hopefully this will be one step closer to ending the love-hate relationship I have with prednisone and the beginning of a more peaceful coexistence.

Author’s Note: Please feel free to share your good and bad prednisone experiences below!

Photo Courtesy of Google Images

Running A Race I Cannot Win

From the bitterness of disease man learns the sweetness of health. ~ Catalan Proverb

Most of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.

I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren’s Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it’s not back to the starting line.

As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.
I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don’t want to admit that maybe things aren’t quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.

I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don’t want to be in this race anymore. I don’t think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it’s like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.

I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It’s not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren’s. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.

Photo courtesy of Chuck Myers

Acupuncture Part One:The Experience

I have had several people ask me about my new found love with Chinese medicine and I have had such incredibly positive experiences with it that I have decided to do a several part series on my different experiences with Chinese medicine. It is not intended to be a thorough explanation of Chinese medicine but rather just my own personal experiences and thoughts about it. I hope it is helpful!

I am not sure when I first started considering acupuncture as a potential treatment modality for a “yet to be named although we think it is Sjogren’s Disease” autoimmune disorder. What I do know is that despite having many more good days than I had originally when this whole nightmare started, I still had ongoing issues that prevented me from holding down a job, never mind trying to carry on with my life in a way that many people take for granted. I was sick of taking a cabinet full of medications and dealing with the oftentimes crippling side effects of them, all in the interest of getting me “well”.

I started doing some research on acupuncture to try and find out more about it. I was afraid of the unknown. I am a nurse by profession and still held some traditional views about health, healing and medicine, despite the fact that Western medicine was not living up to what I needed it to do for this chronic autoimmune disorder. I will be honest-I was not too big on getting multiple needles stuck into me. I started talking about thinking of going for acupuncture on Facebook and a friend of mine suggested a clinic nearby that had a sliding fee scale. She had some success with it and encouraged me to check it out. Since I was out of work, I was very concerned about the cost of treatments and I figured maybe the sliding fee scale might help with that. I made an appointment with The People’s Acupuncture Clinic in Amherst, MA for a consultation and so it began.

I have been caught up in the medical system as a patient on a full-time basis for three full years now with this particular illness (I have also had adventures with heart surgery, cancer, and a few other less serious diagnoses previously) so I figured I had nothing to lose by checking it out and doing one treatment. I was pleasantly surprised by the whole experience. The acupuncturist I saw (Ben) reviewed a pretty extensive health history with me. I had to laugh though at the part where I had to list my top three complaints/symptoms. I mean really, just three??? I could rattle off ten right off the top of my head but in the end, I decided on the three that were keeping me out of work: joint pain, breathing difficulties, and fatigue.

So here I was getting ready for some guy I didn’t know (but who seemed very knowledgeable as well as nice) to start playing voodoo with me. Then I started to think, what if he puts one somewhere he shouldn’t? What if he hits a nerve or something? OK, in all reality they don’t go deep enough to do that but I didn’t realize that at the time.

OK, to start with, the needles didn’t hurt. I’ll admit that since my first treatment, I have had a few instances when because of some sensitivity, a needle has hurt; but it all depends on your definition of “hurt”. To me, feeling like someone is using a sledgehammer on my wrist joints “hurts”. Someone sticking a scope into my lungs “hurts”. A needle feeling sharp for like a nanosecond, doesn’t really qualify as pain to me. Sometimes it passes instantly and if it doesn’t he takes it out. It is quite different than a traditional needle though. They are thin and very flexible. Those few instances they have been uncomfortable are not actually from the needle itself, but related to the area itself where it is being put in. Sometimes it is sensitive because it’s that time of the month (I am more sensitive then) or because the point he is treating is particularly painful that day. My feeling about this is though that I have a history (until maybe a year or two ago) of being so needle phobic that if I can handle having 8-15 needles (depending on the treatment) put in, anyone can!

The acupuncture experience itself is surreal in a way. Everyone reacts differently but it is truly one of the most relaxing experiences ever. It’s better than alcohol and tranquilizers! I know many people fall asleep for the hour, but I never have. I remember the first few treatments, I seriously felt like I had taken a handful of Ativan or some heavy duty sleep medicine. And yes, I can draw the comparison…I’ve had experience with both unfortunately! OK maybe not with a HANDFUL but you get the idea.

I am aware of what is going on around me but I just melt into the chair at the same time. I have had treatments where I feel like I am floating. I have experienced vibration sensations in parts of my body and itching. I have felt my mouth watering which is significant since I was having a constant dry mouth. Sometimes I feel this warmth go through my body. Oh wait, that may be the heating lamp over my feet. Anyways, I can tell that things are happening to my body and it all feels good. For a whole hour, I am actually at peace with my body and trust me, you cannot beat an experience like that….

Perseverance

“Perseverance is a positive, active characteristic. It is not idly, passively waiting and hoping for some good thing to happen. It gives us hope by helping us realize that the righteous suffer no failure except in giving up and no longer trying. We must never give up, regardless of temptations, frustrations, disappointments, or discouragements.” ~ Joseph P. Wirthlin

I had no intention of doing another blog entry this week; especially because I have other writing that I wanted to do. However it’s been one of those days where I need to write what’s first and foremost in my head and right now, that is the subject of perseverance.

I have had some significant medication changes lately for my autoimmune disorder. We can call it Sjogren’s Disease but the reality is, I don’t think anyone is particularly convinced that this disease is the sole diagnosis, even my doctor. That is the problem with autoimmune disorders; there are about eighty of them and accurate diagnosis for many of them is a joke at best. Many of us struggle for years, if not a whole lifetime switching from one diagnosis to another; oftentimes running around with several diagnoses at once. I am pretty sure that our rheumatologists get just as frustrated sometimes as we do with the merry-go-round of uncertainty and frustration, but the reality is that as patients, we live with it every single day of our lives-the uncertainty and the frustration.

Today was a particularly frustrating day because we had to come up with a new plan for my medications. The autoimmune stuff and meds have been a three ring circus (more so than usual) since the end of June. I think that typically, I handle this whole health issue thing pretty well and with a decent amount of dignity, but today was one of those days that I was just pretty damn sick of it. Sick of dealing with being poked, prodded, and asked the same questions over and over. Sick of explaining to people why I am not back at work. Sick of worrying and wondering which toxic medication will do me in first. I know it sounds like one giant bitch fest but it really wasn’t. I was just wishing for a day where my health issues did not play into my life at all.

Then as I was driving home, I was thinking about how my health was right before I started seeing this particular rheumatologist in December of 2008. At that point, I was so freaking sick and no one could figure out what was wrong with me. I really thought I was going to die. I was scared because I was getting sicker. I had terrible difficulty breathing, had lost some feeling in my feet from nerve involvement, and pain so bad that at points, if someone had offered me a gun, I probably would have taken it. Three rheumatologists told me I did not have an autoimmune related disorder and two primary care doctors threw their hands up in dismay. I saw more specialists than I could count. There were times I could not even take care of myself. On more than one occasion, I was told maybe it was in my head. I was even told that all I needed was a vacation. A vacation… really? How would you suggest I get myself there since I can’t stay out of the hospital??

Yes, today I know I am still not in an optimal place physically but the reality is: I am in a MUCH better place than I was in December 2008. The reason: I persevered. I researched, asked a lot of questions, did not take “I don’t know” for an answer. In desperation, I found a pain specialist who tried me on steroids for five days and we saw a miraculous transformation occur, most likely indicating an autoimmune disorder. Yet three other rheumatologists could not be bothered to try this before he did. So I found a rheumatologist (who was my fourth and current one) who knew what the hell he was doing and took me seriously.

According to Merriam-Webster, to persevere is defined as: to persist in or remain constant to a purpose, idea, or task in the face of obstacles or discouragement. I have a purpose: I’m going to kick this thing’s ass. Seriously. I was having a conversation with a friend several months ago about my health. My friend had the best of intentions, but she implied that I may have to accept that this is as good as it’s going to get. I had to disagree. Have I accepted that I have a chronic illness that will affect me the rest of my life? Yes…got that one loud and clear; although the acceptance thing did take some time. Have I accepted that I will probably never work in a hospital as a pediatric nurse in the capacity I worked before? Yeap, got that one loud and clear also. What I am not going to accept is that the way my body is functioning now is as good as it gets. Because once you do that, you’ve given up. You can have realistic expectations of yourself and adjust some of your life accordingly, but you never give up hope, never stop researching, never stop challenging your doctors, and never stop pushing yourself further than you thought you could go.

So as I was getting ready for bed tonight, I thought about how the past few months have just been obstacles in this journey towards better health. I realized that in the scheme of this fight, this doctor’s appointment today was not a big deal. I have persevered through much worse. I’m going to continue to fight the fight and not give up hope that at some point, this whole autoimmune thing will be under control on a regular basis. I will persist, hope and persevere. I will not accept any less.

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