Being an Autoimmune Mama: The First Months

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The last months since giving birth to my daughter have been a wonderful adventure, surprising in so many ways... and overwhelmingly exhausting.  It’s hard to describe how much I’ve learned in such a short time from the basics of how to change a diaper and swaddle a baby –-which seemed daunting at first—to how so many things about motherhood feel instinctual to me.  I never understood how my friends would talk endlessly about the small things they would do with their babies. Now, I love the cuddling, cheek kisses, and silly games we play daily. Things that are interesting only to a parent of an infant, but now bring delight to me daily.  

At four months, we've now crossed the early infant stage and we're getting to the more interactive stage of the daily smiles, coos, and hand sucking that are all so much fun.

Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues.  My worries ranged from big picture fears to specific practical concerns.  I literally lost sleep worrying that she would miss out on what she deserved from her mommy.  I didn’t want her to feel less love than other babies do because of my own health needs.

At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around.   Would I be able to carry her if I was tired?  Would she just be trapped inside most of the winter because of neuropathies and arthritic pain? 

So far, I am pleased to be able to say that I have been pleasantly surprised. Yes, I am tired like any new mom…but I am thrilled to report that we are all ok. I am generally as healthy as I was prior to my pregnancy. My daughter, after an early arrival, has caught up and is growing and advancing well.

That’s not to say this has been easy.  My husband and I took steps to make sure we could mitigate the amount of strain I would have. We knew flexibility would have to be our motto... When interviewing pediatricians I realized distance would have to be a factor.  One got extra points because she lived a five minute walk from our house. Then, I wouldn’t have to lift the little one in and out of a car for every doctor’s appointment and could conserve some energy. 

At times, I would hear other moms to be and moms discuss their exact birth plans or how they would exclusively breastfeed and never give their child formula. My husband and I knew we had to approach everything with a different philosophy…what keeps me and baby healthy is the goal--not ultimate perfection. 

Here a few other steps we took to manage a baby with a chronically ill mama that I thought I’d share:

1)   Get Help! Let other family members pitch in and even feed your baby especially during nighttime hours so you can rest.  I found this extremely helpful for the late evening feeding around 11pm or midnight so I can go to sleep early and get some rest before middle of the night wake-ups.  As others know with autoimmune disease, sleep is key and without it symptoms can get worse. 

  

2)    As long as she eats, we’re ok! While breastfeeding is considered best according to my doctor, we also decided before our daughter was born she would also have formula sometimes to preserve my strength.  (It turns out that because she was underweight the pediatrician insisted that we supplement with formula anyway.)  Breastfeeding is exhausting even for healthy moms, but add autoimmune disease into the mix and it can be very depleting.  I breastfeed and pump as much as I physically can (about 5 times a day), but having formula as an option makes it easier for me to take a break when I need to.

3)    Convenience is key.  As I mentioned above, try to make everything as easy as possible for yourself like having a pediatrician nearby. There have been so many more doctors visits than I expected that being able to get there easily has been the most important thing.

4)    Limit Carrying. I try to carry less and order online if possible.  The need for diapers and baby supplies is constant.  When I lift things, I get more tired so I’ve found diapers.com and other baby sites to be a lifesaver.  They are also cheaper, especially when I find discount codes that I track down regularly.

5)    Freeze, Freeze, Freeze. If someone offers to cook for you, say YES.  Having a baby is depleting and I didn’t have the strength to cook at first.  Now that I’m basically recovered, there really isn’t much time to make a wholesome meal. I’ve tasked my mom with making food for me and freezing it so I have something that I can heat up quickly and have ready within minutes.

7)    Assign Tasks.  Being a mom means being a manager. If you’re lucky enough to have family and friends helping you, make sure to have jobs for them.  I promise something always needs to get done whether its dishes, laundry, or sterilizing bottles. Otherwise, everyone will just stare at your little bundle of joy. I learned this one the hard way when I found myself doing dishes after company came on four hours of sleep.

8)  Take time to be a family unit too.  I must admit having our home invaded with family has driven is driving my husband and I a little crazy.  We try and balance all the company by having one day a week when it’s just the three of us.

9) Hand-me-downs help!  At first I thought we would need to get everything ourselves since we had no family nearby with young kids. I found out that the more I talked to friends about what I was looking for, people started sending us stuff. Friends, relatives form afar, even friends from a moms group have all generously been happy to share . (I promised to give everything back of course.)

This is just a short list of things which have made having a little one easier as an autoimmune mama that I wanted to share. What have some of you done to make the infant phase a bit more manageable while living with autoimmune disease?  I'd definitely love the advice and I'm sure other moms  with chronic illness would to.

Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

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Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?


***Please note I have no relationship with any of the companies mentioned in this or any other post***

A Flare Has Come Around

Well, I've been absent for a bit with good reason.  It's something many of you are familiar with-- A flare.  

As one of my doctors says " for you flares always starts with the eyes".  My eyes become extra extra dry and uncomfortable (As if they weren't dry enough already).  And then the cascade of other symptoms tend to follow.  The neurological are really the most disabling for me because they are just so darn painful.  Once my trigeminal nerve and eyes are activated, (similar to the article discussed in my last post), reading and writing become a real challenge.  I have to limit my time "using my eyes" because it can only exacerbate the neurological pain.  I enter into prevention mode.  I am always calculating what can I do to prevent my symptoms from getting worse and to give myself some relief.  Because once the pain reaches an 8 or even a 10, it's very hard to get it back to being manageable.  

Keeping my eyes extra moist is one of my strategies against neuropathic pain,and I find the dryness at night to be a particular problem.  Local inflammation of the cornea can stimulate the trigeminal nerve so keeping the surface of my eye as comfortable as possible can at least help minimize my pain.  I've discovered a couple new products that have been somewhat helpful.  

The first, is called Niteeye The Dry Eye Comforter.  It's a disposable bubble bandage that I can stick over my eyes for bedtime.  It creates an airtight moisture chamber so that none of the minimal tears that my eyes produce can escape.  When I take them off in the morning, I can actually see a few small drops of my tears on the clear lens.  I still use my regular night time gel and then put the dry eye comforter on.  They are a bit difficult to order and  the least expensive way is to call the manufacturer directly and order a box as explained on the Dry Eye Shop website. The negative, of course, is that they disposable so the cost can add up over time. I do only tend to use them when my symptoms are particularly bad. 

Dry Eye Comforter

I've also tried the Quartz Nighttime Sleep Shield.  These I've had less success with mostly because I tend to rip the goggles off in my sleep.  That means I only have the eye protection they provide for about half the night.  My head is also pretty small so unless I adjust the band to be very tight, they can become loose easily. I was actually able to purchase these at a my physician's dry eye shop for about half the price listed online.  I've heard that many have had good success with Tranquil Eyes Goggles made by the same company.  These provide the benefit of having moisture pads that can be inserted and in the more expensive models silicone beads that can be made hot or cold depending on what works best for your symptoms.  I just haven't tried them yet. 

Quartz Nighttime Sleep Shield

They both make me look an alien when going to sleep at night, but this is the least of my concerns. Less pain and discomfort is my goal right now.  I'm going to try to keep writing when my health allows and they might just have to be shorter posts.  It will be a bit of an experiment, but so is this whole autoimmune journey. 

What are your go to products during flares that provide some comfort and relief?

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?

Living with Autoimmune Disease: Post-Cold Brain Fog

I am now over my cold, but there were some minor hassles along the way as is often the case when you have autoimmune disease.

The good news is that I am physically better.  Yes, my internist made me come in to make sure that it was nothing bacterial and all my tests were negative.  I got over the cold much faster than usual. It didn't take multiple weeks this time. Instead, I felt better after a week of resting and babying myself.  Maybe I can attribute this to the homemade ginger tea with honey bought directly from a local farm that I drank daily. The cold also did not cause a flare, which was a huge relief.

One side effect that has lingered is brain fog.  I can't say for certain that the virus caused the fog, but the timing makes it seem likely.  The fog is worse in the mornings and it takes me until mid-day if at all to get my brain going.  Things that would usually come naturally to me cognitively are a challenge and my mental capacity feels like it has temporarily diminished.  Things take longer.  For me, each episode of brain fog is slightly different.  It's never fun, but I try to get through it with some tips I keep in mind.

1) Keeping myself engaged.  I am reading and now returning to write.  While it can be frustrating, keeping my mind somewhat active in short segments seems to help.

 2) Light non-strenuous exercise improves my concentration and focus.  I have been taking walks or a short bike ride and feel a bit less foggy afterward.

 3) Coffee. Yes, I know many say to stay away from caffeine during brain fog.  But for me, one cup the morning does seem to help.

 4) Keep my calendar up to date. This is one of those times were trying to remember what appointments I have during the week is not going to work.  I will end up at the wrong location at the wrong time. Yes, that has happened before.

 5) Socializing. Brain Fog does not mean you have to hide yourself from the world. Having to interact with others both distracts me from thinking about the fog, but also forces my brain to work and get rolling.  If I don't feel well enough to meet someone, talking on the phone to friends or family is another good option.

 6) Realistic expectations. This is true for living with autoimmune disease generally.  I am putting things aside that I know that I can't handle right now. Trying to read a dense history book or figure out a complicated health insurance issue might just have to wait another few days.

 7) Focus on the basics.  I ask myself what is completely necessary to get done today.  If I am able to handle more that is great, but if not tomorrow is a new day.  And there is a chance the fog will have lifted by then.

I am certainly annoyed by this no good fogginess, but I am relieved it doesn't seem to coincide with feeling worse physically.  Just excuse any typos or commas out of place for now.  How do you get through foggy periods?

My New Low Tech Anti-Brain Fog Tool

Sometimes it is the simple things that can help.

I recently got a dry erase board with a magnet that attaches to my refrigerator.  It has become my new organizational and anti-brain fog tool.  My memory used to be pretty amazing.  I was even resistant to keeping a calendar, but now lists are a must for me.

I have been using it to write down the simplest tasks that need to get done--even loading and unloading the dishwasher, taking out the trash, and basic errands to the market and pharmacy.  It helps me remember  and also adds a sense of accomplishment to those days when I am exhausted and can't do much.  If I just check one or even two items of the list, the day doesn't feel like a waste.  I am thinking of getting another one strictly for my medical related to do lists.  Obviously, creating new lists and making any changes to an existing one is easy.  And the the best part is that it is stuck to the refrigerator so unlike a notebook, I can't forget where I left it!

Here's a link to the one that I have and it is pictured above, but any will do.

My Non-Rx Remedies for Sjogren's and Ear Pain

Many readers have contacted me about my previous posts on Sjogren's and Ear Pain and seem to experience a similarity in symptoms.  On my end, due to a recent productive visit with an ENT (yeah!), I now know that my ear problems are not only neurological, but are also a result of chronic sinusitis and eustachian tube dysfunction (ETD) -- common problems for Sjoggies.


When my nasal passages and sinuses are particularly dry and I am congested, my ear symptoms are worse. This makes sense given that the ear, nose, and throat, are of course, all connected.  My previous post described how some doctors suspect that ear pain or otalgia in Sjogren's patients might be partially caused by dryness in the upper respiratory tract, which can lead to ETD (above picture shows how the eustachian tube connects the back of the nose to the middle ear).  


There are a few non-medication remedies and strategies that I have developed over the last few years to help relieve my symptoms of earache and ear pressure. They are by no means a cure all (and please consult your doctor before preceding with them), but anything that helps a bit and allows me to to do more and be more comfortable is worth it.  And I hope that these might be helpful to others so here goes...

• Saline Nasal Spray -- I use this a minimum of twice a day in each nostril, but sometimes more to keep my nasal passages moist and clear my sinuses.  I also flush my nasal passages with saline prior to using my prescription nasal sprays for better absorption of the medication.  I carry a small size bottle in my purse for emergencies. Saline nasal sprays can be found at any drugstore and popular brands are Ocean and Ayr.  There are also pharmacy brands available at most drugstores, which seem to work just as well.

• Steam Inhalation/Vapor Therapy --  For me, this is one of the most effective ways to alleviate my ear pain, moisten my nasal passages,clear congestion, and unclog my ears.  I use the Vick's Personal Steam Inhaler and apply about two to three drops each of peppermint oil and eucalyptus oil to the water basin and steam for about 20 minutes at a time.  In their chapter on the Otolaryngologic Manifestations of Sjogren's Syndrome, Drs. Jacqui Allen and Peter Belafsky discuss that steam inhalation is helpful to Sjogren's patients in their practice and recommend trying it two to three times a day.  I would estimate that I have some improvement 60 percent of the time after steaming.  The Vick's Inhaler can be purchased at drugstores and through Amazon.  I usually find the peppermint and eucalyptus oils at a health food store or a place like Whole Foods which carries organic products.

• Hot Tea --  This is very simple and serves as my version of steam inhalation when I am not home.  If my ears hurt, I will order a boiling hot mint tea and breath in the vapors.  I know it probably looks ridiculous and people around me must wonder why is that woman sniffing her tea, but it can help a bit and sometimes prevents me from having to head home early.

• Chewing Gum -- Chewing gum with xylitol is already recommended for Sjoggies with dry mouth to stimulate saliva and help prevent dental decay, but it also helps equalize ear pressure especially if you have eustachian tube dysfunction. It is the same principal as chewing gum when you are flying, and it is also a good option especially when I am on the go and cannot use steam inhalation.

• Keep Ears Dry with Ear Plugs -- When my ears get wet from showering or bathing, it often exacerbates my symptoms.  So I have started to use silicon ear plugs such as those made by Mack or BioEars for showering to keep them dry.  I also avoid putting my head under water when swimming for the same reason.  If my ears still happen to get water in them, I use ClearEars which are a pretty cool ear plug that are specifically made to remove water or moisture from the ears (they also happen to be echo friendly as a bonus).

And these are my main tips for now.  Please share what works for you too so we can start a dialogue and help each other deal with these ear symptoms.

*I have no relationship with any of the companies whose products are mentioned in this post*
*Photo Source*

Brain Fogging

When I think about what I have been doing for the last few days – it has definitely been brain fogging.  I have started to use brain fog as a verb because I am certainly not doing anything else that involves using my mind particularly well.  The Sjogren’s Syndrome Foundation describes brain fog as the following:


Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay 

attention, an inability to focus, and difficulty in processing information.

For me, I describe it as feeling like there is cotton in my head that I am trying to push through to no avail.  I knew today would be a challenge when I left my purse that contained my credit cards, money, medicine etc. at the neighborhood coffee shop for over two hours without realizing it was gone.  Luckily, some wonderful person turned it in to the manager and nothing was stolen.  Phew!  So I decided to try and combat the fog by going a on a walk to see if that would get my mind working, but despite my best efforts the fog was still present.

On brain fogging weeks and days, I often find it helpful to keep myself organized by making lists of the priority items that I really need to get done so I don't forget anything important.  Non-essential tasks can wait.  Besides that, I just try to roll with the fogginess, not put too much pressure on myself, and move forward with my day the best that I can and look forward to it LIFTING.  Because I know that it eventually will.

How do you get through those brain fog days?  Do tell!