The Steroid Roller Coaster

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If you have autoimmune disease, it’s likely you’ve had some experience with being on prescription corticosteroids steroids.  They can be quite effective to tamp down our overly zealous immune systems and get flares under control.  They are anti-inflammatory and are also used for other conditions like asthma, allergies, and joint inflammation.  It turns out at some point I’ve been on steroids for most of the above issues.  But while they often seem like a potential wonder drug--and at times they have been for me--they are not a medication to be taken lightly.

Let me start with the good news.   They work. When I’ve had bad flares, I mean flares where each second feels like an eternity of pain, getting infusions of high dose IV steroids usually gets things under control enough.  Nothing else has done that for me in those cases.

When I’ve gone to the emergency room with an anaphylactic reaction, steroids (combined with benedryl) gets the swelling of my throat under control.

For me, however, steroids are not just for emergencies. They are part of my monthly infusion routine to decease side effects and also prevent me from having an allergic reaction.  This is where the problems begin.

Because steroids change me.  I must admit it.  The first two days that I am on them, I usually don’t mind the increase in energy they tend to give me. I feel a bit like super woman. I have more energy, I can do more things with my daughter, carry more, walk more, it's great...at first.

But then I get what must be a milder version of what baseball players call roid rage.  I become quicker to frustrate and anger.  I still look like me (perhaps with a more swollen face, which is another side effect), but I certainly don’t feel like me.  Little things really bother me and my patience goes from what I would consider my usual fairly tolerant self to a short fuse.  I feel all around frustrated. I get mad at my husband and I'm often not sure why; basically because he’s simply the person who is with me the most.

I also feel less optimistic on steroids.  My mood drops and I feel down about having autoimmune disease and how it is impacted my life, career, and family enormously.  The glass goes from half full to half empty in a matter of two days.

Mood changes, mood swings, and depression are listed as side effects off steroids. Some of my doctors have told me my low doses shouldn't cause these problems, but they do for me. I have to be on this medication for approximately a week every month, so it's a regular cycle that I should be used to, but it catches me every time.  My infusions have helped bring me from being disabled by autoimmune disease to relatively functional again, but steroids are part of the bargain that comes along with it.

I don't really have a great solution for what to do, but I have compiled a list of things that are marginally helpful.

1)  Remind yourself that how you feel is not really reflective of who you are and this episode will pass.  Of course easier said than done.

2) Warn close family members that you might not be exactly yourself.  Apologize in advance for any ridiculous things you might say.

3) Ask those in your support network to remind you that how you feel is not realistic and temporary.

4) Create A mantra that you and your family can use. “It’s not me talking, it’s the steroids.”

5)  Engage in normal stress reduction techniques.  For me these might include walking, mediation, and making plans with others.

Most of the time, I feel like I am just trying to get clumsily through these tough periods.  I imagine many others with autoimmune disease confront this problem as well and I would love to hear your input on what works for you.

Wise Readers: How You Cope With Patient Burnout?

Thanks to the fabulous and wonderful blogger Julia from Reasonably Well for writing about last week's piece on "Patient Burnout" and asking readers for how they cope with not just having a chronic illness, but the reality of being a chronic patient.

She got some great responses ranging from the importance of humor and laughter, being kind to yourself, and making sure that your medical care doesn't become an experiment for your physicians.  That last one is an important reminder that being a patient means making decisions with your provider,  not just following his/her medical advice blindly.  We also can't forget as another reader, exemplified that venting can be a powerful force and letting our frustration out can sometimes help us move on to the next thing.

I've shared all the responses below since I personally found them extremely helpful and insightful.  Thanks to those who commented for their wisdom.

 Sue said...

I have found that having a sense of humour is very important. Life can beat you down at times but being able to laugh helps things tremendously.

 Heda said...

Hard to even think about this one. One day at a time I guess is one option. Definitely accepting the illness is vitally important. Keeping a sense of perspective. Guarding against the temptation to make things worse than they are. Finding time for friends and family. Being kind to yourself. Respecting yourself especially when it comes to being able to say no to things that you really might want to do but know you can't. Not letting specialists use you as an experiment for their latest hobby horse. No, absolutely no, unnecessary tests. Way too much emphasis on discounting possible obscure diseases when sjogren's is the most obvious cause of a symptom. Is that enough? And I thought I had nothing mush to say about this topic until I started. LOL.

 Kelly said...

Up until recently, I relied on the ostrich maneuver: head in the sand, ignore symptoms or treat with OTC/home remedies and lifestyle changes, stay away from doctors as much as possible and repeat the mantra, "not that sick, not that sick, not that sick..."

But now I am waiting for a promised referral to the nearest Sjogren's Clinic to get a final word on whether or not it's Sjorgren's and if so, do we begin treatment of some sort. If not, then what is it??? The magic words to get the ostrich's head out of the sand were, "Interstitial Cystitis."

Better lay in a supply of yarn as knitting in doctor's offices helps me tremendously. Even when I can't focus enough to read, I can knit and that feels productive. Instead of a wasted day, I have a new sock for me or cotton washcloth for my grandson's pile of face-cleaning cloths.

 Unknown said...

I started with temporal lobe epilepsy in 9th grade, and the onset of endometriosis before that. I had to deal with the epilepsy, obviously, but the endometriosis- I took remember the words my mother's gyno told her: when it hurts bad enough, you will return! (sounds like Arnold in a movie, hmm?) Well, seizures require ongoing maintenance, infertility and the pain from the endo is what finally forced me to get treatment.

Now, with psoriatic arthritis, breathing problems, bladder problems, heart problems, tingling problems, ibs problems from the as yet undiagnosed something else....

what is most frustrating to me is not always knowing which doctor to go see...the internist or the rheumatologist; the dermatologist or the rheumatologist...etc.

Also, the person (people) who I feel is (are) my biggest supporter (my aunt, and my mother), are constantly coming up with off the wall wacky suggestions or bringing up the worst case scenario of someone they knew who had the same disease, implying that my psorisis (which is mild) is going to land me in the hospital also, instead of just being supportive. Or, that my one foot that the swelling refuses to go down in, is going to be like her friends (who has a bone fragment that now requires an ankle replacement). It's not the same thing!! I keep wanting to shout.

aaah. thank you! for letting me say that. That's my patient burnout, just the frustration of not always knowing who to turn to for help. I often go to my primary care, simply because I'm not sure who to see.

Achieving My Goals...On the Football Field

Players Right  After the Snap

I have found that adaptability is a good trait to develop (if you aren't already blessed with it) when you have autoimmune disease.  I realize it's news to few of you but, for most of us, having a chronic illness means that you have much less control over your life.  How you feel varies on a day to day basis and making plans in advance can be futile.  

I have had to work on becoming adaptable.  It's not in my nature.  I like to set a goal, apply laser focus, and accomplish it within a specific timeframe.  If only life were still so simple now. Becoming adaptable has meant finding new interests or enjoying my previous hobbies in different ways.  I used to play sports, exercise, go to the gym.  These days exercising no longer means competitive sports or going for a run and pushing myself to the limit.  I'm lucky to exercise at all.

One channel I have found as a way to replace my enjoyment of participating in competitive sports has been to become an avid sports fan.  I used to enjoy the experience of attending sports games, but I didn't watch many games on TV.  In my new "autoimmune life," I decided that I would start watching football and "learn" the game.  I found that I actually grew to love watching and, as an added attraction, it was a great way for me to bond with my husband--a major football fan. 

To my surprise, I came to realize that football is a really complicated and intricate game.  It is one thing to get the basic gist of what's going on in the game and another to have a good grasp on the multitude of offensive and defensive plays. (I still have a long way to go.)  Understanding football became a project, one that I could do while lying on the couch. The excitement of the games often made me forget that I wasn't feeling well.

As my enjoyment of the game continued to grow over the last few years, I made attending a  NFL game in person a goal.  I wanted to watch my favorite team, the New York Giants. The catch was that I needed to be well enough to go to game.  

The last two months I've had some improvement in my autoimmune symptoms and this fall seemed like it could be my chance.  My husband and I got tickets to a game, keeping our fingers crossed that I would actually be able to make it. 

For a change, everything actually worked out.  The weather was perfect for me -- in the low 70s and cloudy, so I wasn't concerned about the sun causing a flare.  While I was disappointed that the Giants played dismally, there was excitement to just being there with 80,000 other people cheering and rooting.  I can't remember the last time that I've had that kind of experience.  A year ago, I couldn't have imagined being well enough to make the trip to the stadium, having the energy to sit through four hours of football, and contend with large crowds and lines.   

This experience certainly reminded me that while it's important to accept having a chronic illness and its limitations, it is just as important to celebrate those moments when I can tell autoimmune disease to take a back seat.  Now, hopefully, the Giants will turn their season around so I have something to look forward to watching this fall on Sunday afternoons!

Spontaneity, the Sun, and Autoimmune Disease

The Offending Blackberries

Last weekend, my husband and I partook on one of our favorite weekend activities -- a day trip drive outside the city.  These have become part of our routine during warmer months. Day trips are easier for me in many ways than overnight ones that require more planning in terms of medicines and preparing foods that I can eat.  But unfortunately, I was again reminded that spontaneity and autoimmune disease are incongruous.  I know many of your have had these experiences where you forget for a just for a moment that you have autoimmune disease and there can be consequences.  Well, that's exactly what happened to me.

The story goes like this.  We were driving along in the country on a clear late summer afternoon.  We decided to a stop by a farm stand for an afternoon snack.  It was supposed to be a quick stop just walking into a building so I didn't think to take my sun protection armor along.  As we were about to pay for our fruits and vegetables, I noticed that someone was leaving with blackberries.  I wanted some of those -- they looked plump and delicious.  I was hungry and it was heading towards the end of berry season. I didn't know how much longer I'd be able to get those treats. So I inquired about how to get them and it turns out you had to pick them yourself.  

I had never been blackberry picking before and at the time it seemed like a great idea.  Something new to try, a bit of adventure for a Gal who has been pretty limited by her autoimmune disease.  Off my husband and I went blackberry picking.  It was not that thrilling to be crawling around picking the berries, but I did feel a sense of accomplishment when we finished.  I had put in some effort to get those berries that we were driving home with.

But, no, our story couldn't just end there. A few minutes after we got back to the car, I started to feel fatigued and weak. Like I had been run over by one of the farm tractors we had just seen.  The sun had gotten the best of me even though it was a mere half hour outside in the late afternoon.  My husband and I immediately realized that I had not been wearing my hat or long sleeve cover to protect me from the sun.  We had been truly living in the moment -- a rare occurrence but one that does not always work out so well.  

The next day I was bone tired and every joint in my body ached.  Walking was difficult and I spent a full day on the couch just resting as my body demanded.  I had no choice in the matter.   By the following day, I started to slowly recover. I was extremely lucky this time. I've had sun induced flares that have lasted a couple months. Boy, I am glad it seems this time I escaped.

Were the blackberries so delicious that it made the whole experience worth it?  They were good, but not good enough to make a mini-flare worthwhile.  When I'm feeling better I always want to do more. People, and seemingly endless articles I read, say you should "forget about your diseases" and "just go for it…you'll feel better."  I sometimes try. But what they don't understand is that when I do, there is all too often a real cost. 

When I'm Feeling OK: The Autoimmune Itchies Come Out

Don't worry this post is is not about some new autoimmune skin condition that I've developed. (I've put a mandatory moratorium on adding any new autoimmune conditions to my list.)  It's about happens when I'm healthier and start to more closely reassembly my old self.  The pre-autoimmune Autoimmune Gal. 

The good news is, this means that I'm feeling what I would consider to be "OK".  I might be able to see friends, lightly exercise, and plan fun activities like going to a museum with my hubbie. I still need to be careful and take the usual precautions, like resting, avoiding the sun and not over scheduling. So would you think in these periods, I would just be grateful for feeling better and embrace what activities I can do.  Alas, it is more complicated than that for me. 

Instead it often goes more like this.  Yes, I do start out feeling appreciative for feeling better. However, soon after a few days of feeling "ok" I begin to get restless and start feeling what I could call itchy.  I start remembering all the things that need to be done that I've neglected for the last few weeks or in some cases months.  There are baby presents to mail (most recently 3 months late!), phone calls to make, medical bills to pay, and records to organize. I want to get them all done in one day.

My itchiness doesn't just extend to basic errands and task lists. That would be easy.  This is the time when I start thinking about the bigger issues and questions in my life...and the role autoimmune disease will play in my future.  I start wondering whether I'll be able to go back to work and still have a fulfilling career.   Will my health be stable enough so that I can work at an actual office? If not, how will I be able to mold my career so that working from home will be a possibility?  In some ways asking these questions I know is a good sign. It's an indication that I have more energy and am not in as much pain. Otherwise I could not even contemplate the possibility of doing more day to day activities and maybe returning to work.  I know I should be able to see any day where I feel better as progress, but a part of me wants to restart my life where I left it a few years back. It's hard not to.

There is of course a bit of risk in having the itchies that I'll try to take on too much too soon.  Intellectually, I know that I need to take small steps before committing to something that will take most of time and energy and could be too much for me to handle health wise.  My first step will have to be small, a move from socializing, maybe to volunteering. 

I'd like to move faster, but I know I can only do so much without risking my health. I know it, but it's still very hard to remind myself when I get the itchies. 

Autoimmune Life: Here Comes the Sun...and the Umbrella?

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The recent heat wave has been really tough on me. Like many autoimmune disease patients I know, I struggle with heat and strong sun of the summer months. This summer, as others in the northeast know, as been particularly bad.  The other day, I walked to the farmer's market before ten o'clock and it was already too hot and sunny for met to be outside.  (I am on several medications, which make my skin particularly sensitive to direct sun then there is the chance of a flare.) The rays of the sun felt like they were burning my skin after about five minutes.  By the end of my twenty minute outing, I felt fatigued, nauseous and my skin was already red. I had to stop in a store for a few minutes on my way home to cool down and make sure I could make it home in one piece. 

This kind of heat reaction happens to me even with the many sun protection measures that I take, which I know are common for my fellow autoimmune friends.  I have developed a pretty reliable playbook:

1. SPF 30 or above sunblock

2. The big floppy UPF protected hat, 

3. Big sunglasses with UV protection. 

4. Staying in during peak sun hours

5. Keeping my arms and legs covered.

It's a short list, but easier said then done. The last one, dressing like it's October, in particular can be annoying when it's already 90 degrees and wearing even light long sleeves can just add to feeling hot.  Staying inside except for later in the evenings has been the only strategy that is full-proof but it is difficult in practice and leaves me feeling a bit antsy.  Who wants to have to stay inside during the summer months?  I love the summer. I have to do enough of the hibernation during the winter.  

So, for obvious reasons I've been looking for a strategy to be outside during heat--if only for short periods of time so I can do at least do a few errands.  I've finally come up with something that helps. It's a radical new invention: an umbrella!  

Of course, I've sat under umbrellas at a pool or on a vacation at the beach, but I had never thought of holding one just walking around in my neighborhood.  I suppose this is what aristocratic women used to do to protect their skin in pre-sunblock days so I'm in good company. I'm not sure why ladies' umbrellas went out of fashion but I'm told they are still very popular in China. Even intuitively it make sense that an umbrella is more effective than a hat in almost every respect.  I've found some compact umbrellas online with UPF protection that should work well both rain or shine.  

If you had told me ten years ago I was going to walking down the street on a sunny day in July with an umbrella I would have thought you were nuts. However, many things have changed in my life since being diagnosed with autoimmune disease. My concern about what I look like walking down the street is far down the priority list.  So, if you see someone walking down the street on a bright summer day with an umbrella, perhaps, like me, it's not that they mis-heard the weather channel, but that they are just taking a walk on the shady side.

Preserving Energy With Cooking: Frozen Vegetable Magic

From reading the title, you might think this post is about ecologically sound ways to cook.  But it is actually about preserving my energy, something at which those of us with chronic illness and autoimmune disease need to become master strategists. 

I like to buy fresh vegetables when possible from the farmer's market or the super market and have one with dinner every night.  Depending on what's in season, I am big fan of spinach, cauliflower, broccoli, brussels sprouts and have recently added swiss chard my regimen.  But there are certainly many evenings when the process of washing, chopping, and cooking vegetables is too much for me.  My fingers can be stiff and tired or I might just have general fatigue.  

On those evenings, I tend to scour my freezer for frozen vegetables that can be easily microwaved without much effort on my part.  Yesterday was one of those evenings.  The problem is that I have grown tired of what can often be soggy microwavable vegetables.  On a whim, I decided to try an experiment and "doctor" a bag of frozen cauliflower to see if I could make it a bit tastier.  I came up with Microwaved Cauliflower Sauté. Pictured below:

Cauliflower Sauté

*ingredients in bold*

1) Dig through your freezer for a bag of frozen cauliflower  (Hearty vegetables like broccoli or brussels sprouts might be a good substitute)

2) Microwave for half the time suggested so the vegetables are defrosted, but still cold.

3) Heat olive oil in a sauté pan on medium heat.

3) Add the cauliflower and a pinch of sea salt.

4) Saute for five minutes turning the cauliflower so parts turn brown, but are not over done.

5) Remove form the pan and serve

I didn't know what to expect, but it worked!  The cauliflower was definitely delicious.  Crisp and not soggy or watery.  I could have eaten a couple more helpings if I didn't have to share with my husband.  I'm not sure he could actually tell the difference between last night's experiment and the fresh variety.  I didn't say a word to him (Shhhh) about using frozen cauliflower because I think a blind taste test between the two might be in order.  This dish is also more economical than buying the fresh variety of organic cauliflower so it is a good way to save a few dollars every now and then.  The best part is that the whole process of cooking only took 8 minutes without any chopping or pain, and clean-up was minimal.

What tricks and adaptations have you made in the kitchen to accommodate living with autoimmune disease?

My Story of Cranial Neuropathies and Sjogren’s

I have put off writing this blog post a number of times.  To be honest, it's not something that I like to think about, a luxury I sometimes have when my symptoms are not particularly severe. But it is a subject too important for me to continue to put off.  So here goes.

I am one of the unlucky Sjogren’s patients who suffers from significant neuropathies; in my case multiple cranial neuropathies are the particular nemeses. In fact, for me, cranial neuropathies are perhaps the most difficult part of contending with Sjogren's syndrome. They can be exceedingly painful and are one the reasons SS has been so debilitating for me over the last several years.

While I know I am not alone in having these cranial nerve issues, I have also Iearned that, in some respects, I am the exception to the rule. For starters, depending on the study, approximately 30 percent of Sjogren's patients have neurological involvements of some kind. That broad group includes all neuropathies that impact the central, peripheral, and autonomic nervous systems. Multiple cranial neuropathies in particular are a relatively uncommon subset. One estimate places them at just 5% percent of those with neuropathies, which would mean less than 2% of the overall SS population.  (I’m sure others will have seen other numbers, but the point is multiple cranial neuropathies are considered fairly rare with Sjogren’s.)  

However, since at least I know I am not the only one out there with Sjogren's, Lupus, or other autoimmune diseases contending with cranial neuropathies, I thought I would start with some of the basics I have learned over the last few years.  For starters, there are actually 12 cranial nerves. Making things more complicated, some belong to the peripheral nervous system (PNS) and others belong to the central nervous system (CNS). The short version is that these are many of the nerves that are involved in your face, head, eye, and ear. (If you’re interested, greater details on the specific functions of the twelve cranial nerves can be found here.)

With Sjogren’s (and other autoimmune diseases such as MS) the 5^th cranial nerve or the trigeminal nerve is one of the most commonly involved in the disease process.  This nerve has three main branches V1, V2, and V3 impacting the upper, middle, and lower sections of the face as shown below:

Dermatone of Trigeminal Nerve
By Madhero88 via Wikimedia Commons

Patients with trigeminal nerve involvement or trigeminal neuralgia often have severe pain running down the side of their face, lack of feeling, sensations of numbness or general abnormal feeling in their face.  I realize that pain and numbness may sound contradictory, but it will make sense to anyone who has experienced it. Symptoms can be made worse by simple everyday activities that most people don't think about twice such as eating, being outside in the cold or wind, or even just touching the face. Unfortunately, trigeminal neuralgia is an extremely painful condition and can be difficult to control. Doctors recognize it as a condition of its own and often believe it to be untreatable; a terrible thing to hear for those of us who have it.

For me, the trigeminal nerve was the first of my cranial nerves to be affected by the disease.   It started with a change in sensation on the right side of my face such that touching it became uncomfortable. It was as if my face had gone numb and progressively painful at the same time.  Not a good feeling at all.

But that was just the start for me. After the trigeminal nerve, I had other cranial nerves become involved too.  I had problems with the 7^th cranial nerve, which impacted my facial movement and caused hemi-facial spasms.  As a result of its involvement, at times I was unable to move my face or open my eye.  My 8^th cranial nerve, which is responsible for hearing and balance, also joined the dysfunctional nerve party.  I experienced (and at times still do have) extreme ear pain, sensitivity to any sound and vibration, and balance issues.  I was even unable to be in a car or train because the vibrations and bumps of the road caused so much pain.  I was in constant unremitting pain and unable to do basic everyday tasks.  It really left me at my wits end… I could go on, but I am sure you get the idea that my immune system had mounted a full-fledged attack on my cranial nerves.

Now, back to the autoimmune aspect of it, which I hope may help some other patients. All of the nerve/pain issues described occurred before any of the more twenty doctors that I saw during this time diagnosed me with autoimmune disease.  If anything, the pain threw them off. I was told I had a pain syndrome and doctors put me on pain meds. All they did was make me slow-witted and, while they masked the pain at times, they did not make it go away and I kept getting worse. The doctor's response?  You must have a "bad pain syndrome. Take more drugs." This was from some of the most prominent medical centers in the country. 

I know that I am probably not alone in the autoimmune disease community of having had something like this happen.  What I have learned since then is that many doctors, even rheumatologists, are not aware of the possible neurological complications of Sjogren's Syndrome.  And the big and important question of course is why is this the case?  So that is what I’ll try to tackle in a bit more detail in an upcoming post.  Stay tuned.

I realize it's a very tough subject but I would be very interested to hear if any of you have neuropathies related to autoimmune disease. If so, how have they affected your life?

Sources

http://brain.oxfordjournals.org/content/128/11/2518.short

http://www.ncbi.nlm.nih.gov/pubmed/20827117

http://www.hindawi.com/journals/ad/2012/645967/

Preparing for IVs, Sticks, and Pricks

Getting my blood taken, being hooked up to IVs, and having infusions have become a fact of life for me.  It's a regular routine I know I share with many other sjogren's patients and those suffering from other autoimmune conditions.

I've learned a few things over the years that helped me and I thought I'd share. Hopefully others have tricks or tips they can add to these suggestions.

My veins are hard to access. It's not something I thought much about before being sick, but it sure makes life difficult now. The nurses trying to stick, prick or prod me in various ways always had a hard time getting a vein to work, resulting in a number of sometimes painful attempts and an array of multicolored bruises.  I knew the needles weren't going away, so I embarked on a new routine to see if I could improve the condition of my veins. In combination, the practices below have helped quite a bit over the past few months.

Weight Lifting. No, I'm not turning into a body builder. (As my husband reminds me the steroids I take don't lead to Barry Bonds type home runs.) However, I realized that I was weak from being basically unable to exercise for three years because of illness. I needed to build up my arm muscles to make the veins come to the surface. I started to to lift weights at home to build up my arms. Initially, I tried curling 3 pound dumbbells…but they were too heavy for me after I tried just a couple of bicep curls.  I then moved down to 2 pounders and these were much more my speed. I started very slowly and have since been able to work my way up to doing a variety of exercises with the 3 pound weights. Maybe I will eventually make it to 5 pounds if this vein building routine continues, but that is probably a little ambitious. I can visibly see the difference in the veins in my arms and hands.

Drinking Water. This may be obvious to many, but I started making a point of super-hydrating 24 hours before my infusions. It's made a difference in making my blood easier to access. 

Hand Warmers and Gloves.  My hands are usually cold from Raynauds and I find the temperature in hospitals is never quite comfortable.  I knew having cold, blue hands always made for a hard time putting in an IV, but I wasn't sure what to do about it.  When I was at a sporting good store one day, I saw a box of hand warmers and a thought popped in my head. What do you know, they helped a ton.  Whether it is winter or summer, I now show up to the hospital wearing a pair of over-sized gloves each filled with two hand warmers.  I don't take them off until the nurse is about to stick me. It really helps my veins pop out. 

You know that you have spent too much time getting medical care when the improved condition of your veins becomes a source of pride. I realize this is probably not the most interesting post for the average reader, but these tips and discoveries have made a huge difference for me and I thought they might be useful to others who frequently get blood taken or infusions.  Please share away if you have others.

Telling My Health Where We Stand

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It is currently Wego Health's National Blog Post Month (#NHBPM).  My favorite prompt from this week was to write a letter to your health.  I love this idea and figure it is about time that I have a heart to heart with my health and let it know where we stand.

Dear Health,

I have a question for you. Can you take a vacation?

You should know by now that no matter what rare or difficult health problem you lay down on me that I will refuse to give up.  Whether it is Sjogren's and its roller-coaster of complications--including autoimmune neuropathies, uveitis, or, as it is right now, angioedema--that you have put me through, I will research treatments and find the right physician who can help me no matter what the challenge.

It seems that you never really rest.  My guess is that your favorite game is whack-a-mole. Yes, it must be what you play. Just when you get one condition under some control, you get bored and decide something new needs to occupy you.  Well, I can play whack-a-mole right back. I will keep fighting to knock you back into your hole.  I am determined to live as normal a life as possible despite your tireless efforts to prevent me from doing otherwise.

This does not mean that there are not days where you seem to be winning -- the days when I am in pain, fatigued, my joints hurt, it is hard to catch my breath, or my face swells up like a balloon.  But I will not stop and I will not give up.  While I must try to accept that that you will not be a stranger anytime soon, continuing to be one of the most challenging parts of my life, I will not let you break my spirit. And when I have those moments of mental fatigue and my hope is waning, I will lean on my husband, family and friends to support me and encourage me onward. I will make you cooperate in some way.

I will not only spend my energy trying to fight you and be as healthy as I can, but I will also work to bring awareness and research funding to Sjogren's and other autoimmune diseases. I hope that you will become more pliable, controllable, as new treatments emerge.  That you will no longer be the ultimate struggle and hardship in not just mine but so many people's lives with chronic illness.

I must admit that while we are at odds, I have learned a lot from you.  I am resilient and a fighter and can handle much more than I ever thought or really wanted to for that matter.  I do still implore you to get tired and take a long vacation one of these days. It would allow me to take a much needed health holiday from doctors and medicines and not feeling well, but as long as you insist on being hyperactive --I have my boxing gloves perched and ready.

Sincerely,
AutoimmuneGal