For Everything There is a Season

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

Category: medications

What I Have Come To Understand

September 10, 2012 / / 12 Comments




In the two and a half years I have been writing this blog, I don’t think I have ever written a post about a doctor’s appointment with my rheumatologist. The appointments tend to be pretty significant since the rheumatologist treats the Sjogren’s syndrome. I am sure that I have mentioned events that have happened at certain appointments, but I think that has been the extent of it. I think the reason for this is because I don’t think people will be interested or that the post may be boring. Today I realized that I may have made a mistake. Sharing information from these appointments with my rheumatologist not only may help someone else, but it also gives other people the opportunity to give me feedback about their experiences with different treatments, side effects, and complications from medications.

I have had more severe symptoms than usual lately with some new ones thrown in for fun. Therefore I have been seeing my rheumatologist, Dr. P, more often than usual. These appointments tend to be  stressful for me compared to those with other doctors. Sjogren’s syndrome, like many other autoimmune diseases, often presents with a myriad of symptoms and often it is like trying to fit together the pieces of a puzzle. Is this symptom autoimmune related? Is it a side effect from a medication? There is the unpredictability of not knowing what the next step may be in treating the illness. Then there is also the fact that Dr. P’s office is an hour away from home, she is usually running behind (I have attributed this to the fact that she does not rush through her visits), and sometimes there is lab work to be done after the visit. From the time I leave my home to the time I pull back in the driveway, I am looking at a five hour trip. Exhausting.

I have  been more frustrated than usual with her, myself, and the whole Sjogren’s situation in general. I had just recovered from the whole Guillain-Barre/blood clots in the lungs fiasco when I began to develop severe, debilitating migraines thought to possibly be autoimmune related. After struggling to find a medication at a dose I could tolerate to manage these migraines, some of my Sjogren’s symptoms decided to come out and play; most likely because I had weaned off my steroids. Severe fatigue and joint pain worse than I have had in at least a year were the highlights. In addition to that, I have been having some significant urinary issues that come and go and that has prompted some further testing; the cause thought to possibly be autoimmune or medication related.

What this has meant is that Dr. P and I have been continuously trying to figure out a course of treatment to manage my illness. A course of treatment for an illness that has no cure and really no acceptable or standard form of treatment. If you have diabetes, you change your lifestyle, check your blood sugars, and take insulin. The end result is that most of the time, your illness can be controlled. Not the case with Sjogren’s, or many other autoimmune illnesses for that matter.

And there are only so many medications to try. Appointment after appointment Dr. P and I discuss the options and what may come next in regards to medications. She keeps wanting to put me on or increase my dose of prednisone. This gets me pretty worked up to say the least. If you have spent any time reading my blog, you will understand how much I hate prednisone. Here’s the thing though: as Dr. P said today, I am between a rock and a hard place and it is a matter of choosing the lesser of all evils. I have already been on many of the other autoimmune medications such as methotrexate, Imuran, Cellcept, and Enbrel. Cellcept did help quite a bit but made me so sick that my previous doctor had no choice but to take me off of it. Enbrel helped a little but not enough to justify the chronic sinus infections it was causing me to have.

As we discussed today, there are some other options to consider such as the medications Arava and Rituximab. But they are not without their risks as well. It is hard to make decisions, I am sure for her as well as for me, about which risks to take. Do we consider Imuran again and take the risk of liver damage and other complications or continue trying the steroids at different doses and see what side effects I can live with and risk long term complications such as diabetes, cataracts, and stroke? As much as I hate the prednisone, there is no doubt, it works for most of my symptoms. The problem is that I need a lot of it and the more I take, the worse the side effects are and the higher the risk of severe long term complications.

So our plan for now is to double up my prednisone dose to 15 mg for a few days and then slowly wean it down to 10 mg rather than the 7.5 mg I am currently on. We did this about two weeks ago when the pain and swelling got bad enough to interfere with my daily functioning and it worked but once I got back to 7.5 mg for a few days, the symptoms started up again. So this time we will only wean down to 10 mg. We agreed that 10 mg is the maximum dose of prednisone that is comfortable for me long term. Well, for Dr. P anyways. 0 mg is the maximum dose I am comfortable with but the reality is that my options are getting fewer and fewer and I cannot risk further Sjogren’s complications or live in this state of health.

What I came to understand from my appointment today is that there are no easy answers. Not even easy answers, but any concrete answers.

There is no medication in this world right now that is going to fix me without making me sick in some other way. Maybe someday there will be. But not today.

I am also starting to understand that I don’t think my body is ever going to go back to the point it was at before December 2008, which is when Sjogren’s started to truly ravage my body.

This does not mean that I still cannot do what I am doing; exercising, eating healthier, reducing stress. I will keep trying to control my symptoms through diet and exercise. I will live a healthy lifestyle. I will meditate. I will work with my doctors and stick with my treatment plan. I will laugh and I will play. But I guess for now at least, I am not going to place any of my hopes on any one medication to be the answer for restoring my body to the state that it was once in. Rather, I will continue to work with the body that God has given me in this moment and in this day to live in the best possible way that I can.















































































Photo Courtesy of Google Images

Crossroads

June 14, 2012 / / 6 Comments

I feel like I am at a crossroads in regards to my health, nutrition, and exercise lately. Merriam-Webster dictionary defines the word crossroads as: a crucial point, especially where a decision must be made. I am not certain that my decisions are necessarily crucial but you get the point.

Over the past two months I have slowly been weaning off my prednisone which was at very high doses to begin with between the oral tablets I was taking and the IV infusions. I finally came off of it three days ago. I knew it was going to be difficult. Historically I come off prednisone for a while and then ultimately go back on it at varying doses because my symptoms return. However this time I am determined to stay off of it for as long as I can unless I am in a very bad or urgent situation such as literally not being able to walk or if I am having extreme difficulty breathing. The reason I feel so strongly about staying off the prednisone is because I am forty-one years old and I believe that my doctor and I need to try another course of treatment. The risk of long term side efefects is high. Not to mention the ones I have to live with when on the medication. It is a toss up most of the time as to what is worse: the disease or the treatment. At this point, it has become a quality of life issue.

But I am in a lot of pain. The joint pain that notoriously feels like someone is driving a chisel into my bones. It is not the worst pain I have ever had but it is pervasive and it is starting to affect my daily life again. I know that if I call my rheumatologist, she will immediately put me back on the prednisone and I just can’t do that to myself again right now. Also, the adrenal gland gets shut off when you are on prednisone and they need time to work on their own again. While this rebalance is taking place, it is common to have symptoms like joint pain. I am hoping that this is all this pain issue is: a response to coming off the prednisone.

I am also at a crossroads with my exercise program. While I was on the prednisone, I was able to do a lot more than I can now. At this point, I cannot even swim without being in significant pain afterwards. And this upsets me. I have come to rely heavily on regular exercise to not only manage my weight but also my emotional well being. I am currently reevaluating the exercise program I have put in place to see how I can work it so that I can still exercise without paying such a heavy price afterwards. It is difficult though when I have made so much progress over the past two months in regards to my fitness level. All I want to do is keep going forward, not backwards.

The final issue to my diet. I have been working so hard on changing my lifestyle over the past six months and my dietary changes have been drastic. And now I am ticked off. Why? Because I have busted my butt for the past five to six months eliminating all gluten and dairy from my diet. I have drastically eliminated sugar as well. I did these things because it has been shown that gluten, dairy, and sugar can contribute to inflammation. I have sacrificed a lot to make this eating plan work for me and yet as I sit here typing, the joints in fingers are swollen and painful. I know I may be jumping the gun a bit because once my body chemistry evens out, maybe the pain will be better. But it is hard to not be discouraged when I had a lot of hope placed on my dietary changes making a huge difference in my illness. Not to say that it won’t but time will have to tell on that issue.

So what do I do now? Do I give up my gluten and dairy free diet? Do I let myself start having sugary dessert more often? Do I just sit back and use my pain as an excuse to not exercise as often or even at all? Most importantly, do I go back to my medicine cabinet and give in to the pain; knowing that relief may just be as easy as a 10mg tablet of prednisone?

Hell no.

Here is what I am going to do instead. I am going to go to acupuncture more frequently. I will keep reading and learning about pain management techniques and use them as much as possible. I will eat even healthier than I already have been. I will use regular pain medicine when I need to give my body a break from the pain. And I will still exercise. I am not quite sure how but I am resourceful. I will figure it out.

The most important thing I will do is….

Not give in.

I will fight to be stronger than this current flare up of pain. I will not use my illness as an excuse to eat crap or be a couch potato twenty-four hours a day. However, I will also be kind and gentle to my body in whatever ways it need me to be. I will have faith that this too shall pass. One day and one hour at a time.

Photo Courtesy of:  Image Crossroads (C) by www.martin-liebermann.de

Another Morning

February 7, 2012 / / 6 Comments
“When you arise in the morning, think of what a precious privilege it is to be alive-to breathe, to think, to enjoy, to love.” ~ Marcus Aurelius

I wake up and it is another day. I stop to think of that fact and be grateful for it. That is important, very important. It is so easy to get lost and discouraged first thing when you wake up. I have slept maybe two hours. Maybe four. The nights can be long. But I am awake. And I can move. Maybe not always easily or without pain, but I can get myself out of bed. I lie there and think about the struggles ahead of me that day and then I stop to think about what I can offer that day to make it a better day, one with a purpose; for myself or for someone else.

I prioritize in my head what is necessary to do and what is optional. Most of it is optional, it has to be. If there is an appointment I have to be at, the day revolves around getting to that appointment. I get out of bed and take my medications. So many pills in their carefully laid out pill box.

Steroids.
Inhalers.
A yellow pill.
A lot of white ones.

It is helpful to be an organized person when it comes to the taking of the pills.

Next priority is drinking as much as possible. The dryness has woken me up throughout the night, despite the humming of the constant humidifier and fumbling with eye drops and mouth moisturizer several times in those wee hours. The concept of too much water does not exist in my mind. My body soaks it up eagerly like it has never seen it before. Now, a bathroom run for me. A bathroom run and fresh water for Molly. I am already having difficulty convincing my arms and legs to work in their proper fashion.

Back to bed to check e-mails and Facebook. I am looking for inspiration. Something that will make me laugh. A kind thought from someone. A status update about something good happening to someone; something to help replace the light and joy that the steroids have taken from my normally even keeled and sunny disposition. I take a cookbook or two back to bed with me to figure out what nourishing meals I can put in my body to help heal it. If the day is all mine and not one that is a slave to doctor’s offices or hospitals, I try to figure out how much I can do and again, what the priorities are. The priority might be completing a load of laundry. It might be vacuuming. Whatever it is will have a price, a physical price. I used to feel accomplished when I could go and go for fifteen hours at a time. Now I am grateful if I can manage to get through thirty minutes of activity.

And so it goes. Getting myself showered and dressed used to take forty-five minutes with a good end result. Now it is a two hour production and the goal is a clean body and clean clothes. It’s not as hard as last week though. That is a very good thing. I miss being able to do more physical activity. I miss being able to walk my dog and feel the power of my stride underneath my body. I will never take that for granted again. My wish is that no one else reading this ever does either. How much will I get back? Yet to be determined.

I am learning the art of being gentle with myself.  I am more aware of the importance of caring for myself in the most basic of ways. The comfort of hot water on my body. The wholeness of fresh green vegetables entering my body. The smell of fresh air. The power of a comforting touch. Things which I never noticed when I was too busy running from one place to the next; from one task to the other.

This illness forces me to be more aware. Every hour, every minute is a reminder of all that is currently not working correctly in my body. Constant thirst. Constant eye irritation and difficulty getting my eyes to adjust. Weakness. A medication of some sort almost every hour. Arms that shake. Side effects from medications. Legs that don’t move like they should. Pain. Food that gets stuck in my throat when I swallow. Exhaustion.

Frustration.

Anger.

Fear.

I will be more than this.
I am more than this.

Remember to smile.

Breathe.

Remember what is important.

Breathe.

Remember that another morning will come.

And with it, hope as well.

Photo: Courtesy of Google Images

The Prednisone Wall

June 13, 2011 / / 8 Comments
“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

Top 10 Ways To Get Out Of The Hospital Alive

July 22, 2010 / / 0 Comments

“A hospital is no place to be sick.” ~ Samuel Goldwyn

Anyone who has spent any amount of time in a hospital is aware of how difficult it is to be in one. Between being sick, emotional stress, lack of sleep, a million people in and out of your room, overworked nurses, fresh right out of medical school residents, etc., it can be nothing short of a nightmare. I have had the distinct pleasure of being hospitalized four times in the past year and a half and I think I have learned a few things along the way that may be worthy of passing on. Hopefully you will never need to know them but just in case, here we go:
1. Always carry a list of your medications on you either in your purse or your wallet. This is especially important if you take multiple medications. I know, you are going to sit back and say “well I only take one or two, I know them by heart.” Trust me, when they are hooking you up to all kind of machines and sticking needles in you left and right; it is hard enough to even remember who you are, never mind your medications.
2. Ask your nurse to tell you every medication she gives you and what the dosage is. Everyone makes mistakes and I have to tell you, I have caught some whopper mistakes. Personally, I think the hospitals with the best nurses will bring the medications to you still in the package and open them in front of you while telling you what each one is.
3. Make sure the doctor in charge of your care orders ALL of your medications, not just the prescription ones. This may mean you have to bring/use your own stash. Sometimes pharmacies may not carry a certain prescription medication and forget about getting something non-prescription most of the time. I was in a situation where a doctor said I would be OK not taking a prescription eye drop for a few days that the hospital did not carry. I am sure my eye doctor would have thought differently. So what did I do? I had the eye drops in my purse. I told the nurse I was using them (this is VERY important) and I used them. No need to make one medical problem worse while you are trying to fix another, right?
4. Write everything down if you are able to. If you are too sick, ask your doctor/nurse to write down anything important they just told you. You are much too stressed, too sick, and too exhausted to be expected to remember anything that is told to you.
5. You will not sleep in the hospital unless you are doped up on so many drugs that you have no choice. For the average person though, this is not the case. Ask for sleeping medication to be ordered for you. Sleeping medication is usually ordered on an as needed basis, so you get to decide if you need it later or not. The best time to ask for this is when the doctor comes in to do your initial evaluation when you are admitted. If your forget, ask your nurse as soon as you remember. It is a lot easier to get a doctor’s order while they are around rather than at 2am when you just want to cry because you are exhausted and can’t sleep.
6. Speaking of sleep, try to get it when you can. This may mean shutting off your phone, asking visitors not to come, etc. Anyone who knows anything about good sleep hygiene will tell you don’t nap during the day as you won’t sleep at night. I say to hell with that, this is the hospital. People are going to wake you up at 4am to take your blood pressure even though it has been normal your entire life and you are sleeping for the first time in two days. Nap when you can, even if it is 4pm. You will be grateful later that you did.
7. If you are not a frequent flyer to the hospital or something really critical is going on, try to have someone with you during the day and not just anyone. Don’t automatically think the person closest to you in your everyday life is the best choice. Try to pick someone who can handle you at your worse, can stay calm when it all hits the fan, and will advocate for you. The last thing you need is someone hovering over you every minute saying “oh my god, oh my god.” Have them take the notes if necessary and be direct with them about when you need to rest, sleep, or need them to smuggle in a stiff drink (OK, just kidding on that one).
8. Make nice with your nurse. He/she is your biggest ally (besides yourself) and your best chance for getting through the whole experience. If you can summon up the energy, try to establish a rapport with your nurse. Also, ask them if they can try to be your nurse the next time they are working (if you can stand them). A lot of hospitals try to do this but it can oftentimes get overlooked. There is something to be said for a nurse who already knows you and it allows for better continuity of care.
9. Know who is who and if you don’t, ask them. They should also be checking your bracelet (that is why you have one!) and/or asking your name before they do anything to you such as give medications, draw blood, bring you for tests, etc.
10. This is the most important. When you know you are right or something does not feel right, speak up. And keep speaking up until the issue is resolved. There is a hierarchy in hospitals and it depends on whether it is a teaching hospital or not as to what the hierarchy is; but there is one. If it is a nursing care issue, start with your nurse and work up from there; everyone has a boss. In terms of the medical plan, speak with the doctor in charge of your care and if you are not getting the care or answers you need, ask to speak with their boss (usually a more senior resident or an attending physician).

I was once admitted from an emergency room. My pulmonologist (doctor who specializes in respiratory issues) made it clear to me what the plan would be overnight but the resident working on the floor did not follow the plan and this included breathing treatments and an increase in a medication. I was still having some difficulty breathing. I spoke with my nurse four times during the night who in turn called the doctor. He did not change anything and was too busy to come talk to me. By 6am, I told the nurse I was calling a family member to come pick me up ASAP (and I was serious-I would go to another hospital if I had to). Boy, did that doctor come to see me fast! I got a lecture about leaving a hospital AMA (against medical advice). I gave him a lecture about medical negligence. My pulmonologist was called at 6:30am on a Saturday. He agreed with me that the medical plan was not implemented. By this point, I had lost all trust in the people taking care of me and strongly felt that even if the plan was implemented now, that it was not a safe place for me to be. He agreed to discharge me with the medical plan we had initially discussed. The understanding was I would get back to the hospital if I needed to and I would stay with a family member. The pulmonologist agreed to see me in his office first thing Monday morning. Ultimately, I ended up making it through the weekend staying with family because I was implementing the medical plan my pulmonologist and I had put in place.

Now, I am not advocating to threaten to leave the hospital anytime you think something is not going right. This was a pretty unusual situation. Hospitals are very chaotic though; information does not get communicated and mistakes are made. However I think it goes to show that as a patient, you are the one ultimately responsible for your body and your medical care so listen, observe and most importantly, speak up!

© 2024 For Everything There is a Season

Theme by Anders Noren — Up ↑