Back to Life

I don't want to jinx myself but I find that I am feeling somewhat hopeful that we've found a possible solution to the meningitis issue.  It has been almost a month and a half since I've had an incident and that's the longest I've gone since September.  I met with my rheumy last week and he has decided to wean me off the steroids in order to see if the Rituxan is working.  I am so excited to be off the steroids!  I am ready to take some of my life back from illness.  It's the first time in over a year where I find myself able to look forward and see things besides continued hospitalizations in my future.

From what I have read of other people's experiences with Rituxan, it sounds as if I might even get some of my energy back for the next few months.  Right now, I'm still dealing with some major exhaustion from the treatment itself but once that wears off, I have hopes that I will be able to become a bit more active.  I would really like to shed these steroid-induced pounds!  

I am so thankful to God and to all of the people who have been by my side through this.  Without all of you, I wouldn't have made it far enough to see a possible light at the end of the tunnel.     

Happiness is......

Spending an evening on the couch with my amazing husband, watching documentaries 

Having Fiona cuddle up under the covers behind my legs (the "batcave") in bed

Watching my teenager take on more responsibilities and growing into a wonderful young man

Cuddling with my baby girl on the couch watching "chick flicks"

Quiet time in the recliner with a good book, a blanket and two pugs curled up on my lap

Family game night

Church on Sunday mornings

Our daughters coming home and completing the family

Cooking & baking for my family and friends

Dinner & a movie out with my bestie

Traverse City trips with my husband

Pizza & movie night in with the fam

Family vacations with our full family, including the Bauer's

Days at the pool with my bestie & our kids

A cup of coffee & sugared doughnut from Phoenix Rising's bakery

Pedicures

Time spent in the Lord's word, meditating on His goodness, grace & mercy

Trips to amusement parks, beaches and zoos with the kids

Tapas with friends

A mocha frappe from McD's

Being a stay at home mom

A little Rex and a game of Skip-Bo with my bestie

Learning each day how to rely more on God and less on myself

Marriage to an amazing, loving, caring man who always takes care of me


 

Rituxan Treatment #1

It came as no surprise to me that I was up bright and early yesterday morning in preparation for my first chemo treatment.  There was no way that I was sleeping since I was a nervous wreck.  Not knowing how I would feel or my body would react to the treatment was nerve wracking.  It was evident that I was a bit worked up when they first took my blood pressure which was 151/105.  

Everyone at the infusion center was very nice.  They put me in a private room which was a bonus since I ended up sleeping most of the day away and I never would have been able to do that in the main infusion room with all the other patients, their noises and the TVs going.  I warned the nurses about my veins but I don't think they took me too seriously until they actually tried to tap a vein.  Apparently the center has a rule that each nurse only gets two shots at getting a vein and then another nurse needs to try.  Thankfully I only went through two nurses....on the fourth poke they struck gold (or blood as it were).

 All set and ready to go!  They started me on a 20 minute drip of Solumedrol and then we moved on to a 20 minute drip of Benadryl in addition to taking Tylenol orally.  Once all the pre-medication was completed, they started the Rituxan drip.  The way they do the drip is that they set the IV to stop every 30 minutes so they can take vitals and increase the drip.  The pharmacist explained that a person's body would revolt if they tried to infuse the Rituxan at the rate of a normal IV right off the bat.  They have to slowly increase the drip to allow the body to adjust to the medication.  

I experienced my worst side effects within the first 30 minutes.  I tingled all over and felt really nauseous.  Once my body adjusted, I only had chills, a slight temp and a sore throat.  They stopped the IV for 15 minutes when I complained of the sore throat.  Apparently they don't mess around with any side effects!  It went away and didn't come back until the very end of the IV. At the end, I had a slight headache and the sore throat along with some serious exhaustion.  From start to finish, the Rituxan took 5 hours.  Once the IV was done, I had to wait another hour for observation.  I was finally able to leave at 4:30.

It was a long day...arriving at 8:45 and leaving at 4:30.  I am so very glad that my rheumy chose the two week infusion instead of the four weekly infusions.  I go back on March 4th for my final treatment and then I have 6 months before my next one.  

After arriving home yesterday evening, I was mainly experiencing exhaustion with a sore throat, nausea that came & went and a slight headache.  I went to bed toting my trusty puke bucket but thankfully, did not have to use it. I don't have much of an appetite at the moment but that won't hurt me much.  Other than the lack of appetite, I am still bone weary with a sore throat.  I know that most side effects show up within 24 to 48 hours of the infusion but if this is the worst of it, I am so blessed!  

Sjogren's Syndrome with Neurological Involvement

For anyone who has been with me on this blogging journey, you know that I have been dealing with reoccurring aseptic meningitis.  For those of you who are just joining me, I suffer from Primary Sjogren's Syndrome (read more about that here) with neurological involvement.  Sjogren's (or SJS for short) is primarily an autoimmune disease that attacks the moisture producing glands in the body.  This may not sound awful but imagine having such dry eyes that your corneas are scratched and you can't see.  Or not producing enough saliva (which is what keeps your enamel on your teeth) and having severe tooth decay.  Not the end of the world but highly uncomfortable and a big blow to someone's self-confidence.  

In my case, in addition to the aforementioned symptoms, I also have reoccurring aseptic meningitis.  Since December 2011, I have had meningitis 8 times, and have been hospitalized 9 times.  The biggest challenge is that none of the doctors who have seen me, either in or out of the hospital, have ever seen a patient with this problem.  For my first three rounds of meningitis, the doctors assumed it was bacterial even though my lumbar punctures were coming up negative for bacterial, fungal or viral meningitis.  After my third bout of meningitis, I just happened to see my Rheumatologist for my semi-annual check up and we discussed this odd problem.  He told me that it was a rare but possible side effect to my SJS.  At this point, he put me on Plaquenil in the hopes of suppressing the SJS and therefore stopping the meningitis.  In April, I was hospitalized again and the doctor switched me to Cellcept.  While I was on Cellcept I was hospitalized in October so then I was switched to Methotrexate which is a pill form of chemo.  I was hospitalized shortly after that for a second time in October.  By the time I was hospitalized in December, both my Rheumatologist and the Rheumy in Ann Arbor that I went to for a second opinion decided that the Methotrexate wasn't doing me any good.  This is when the Rituxan was ordered.  It was scheduled for mid January but I was hospitalized the day before my first treatment.  

I was finally feeling well enough to schedule my first IV infusion and that will be starting tomorrow morning.  We're praying that the treatment works and that there aren't too many side effects.  According to my research, there still isn't much known about these SJS related CNS issues and they have not yet proven the efficacy of treatments like Rituxan (see here) but we will keep praying.  My friends and family joke that I am always the exception to the rule, and that if something weird can occur or go wrong, it will happen to me.  Let's hope that isn't the case with this chemo treatment!

Ups and Downs

The last few weeks have been pretty uneventful health-wise.  I've been feeling really well, all things considered, minus the ever present exhaustion.  Thursday and Friday of this week laid me pretty low, with nausea & headaches but I seem to have rallied this morning which is a good thing.  I start chemo on Monday and since I am not sure how I will react to it, I'd like to get the house cleaned, laundry done, food prepped, etc. in case it knocks me out like the pill form did.  Other than that, I saw my neurologist this week and after looking at my MRI/MRA he gave me the all clear.  My brain looks great, especially for all that it has been through in the last 14 months.  

Beyond the medical stuff, life has been busy and good.  My oldest became a teenager on the 6th.  Where did the time go?  

He went from this:

To this:

He's grown into such a wonderful young man, I am so proud of him!  There are times when I catch myself wondering how their birth father & grandparents could walk away from them.  How could you even want to miss out on all these glorious childhood & teenage years?  What could ever possess you to think that not watching your kids/grandkids grow into their own personalities would be a good idea?  **sigh** I just have to let it go and be thankful that I am not the one missing out.

Other happy moments in the last few weeks included the beginning of a volunteer stint at church in our Refugee Ministry department and a sweet Valentine's Day dinner with my family.  I'm very excited about the volunteer opportunity.  I can already tell it's going to be fun and very fulfilling.  

I'm looking forward to a quiet weekend with my family.  Girls night with my littlest tonight and church with the family tomorrow.  God is so good!

Another IEP down...

During the school age years of their children, parents become experts in many things.  Some parents perfect the art of doing the "room parent" thing...classroom parties, field trips, Box Tops for Education, the PTC, etc.  Other parents learn how to juggle homework, housework, sports and extracurriculars.  I have definitely learned the juggling game but my specialty is the IEP.  I am a pro at it, having at least two, if not four, IEP's each school year.  Some of my IEP's are simple, others have been a complete nightmare, lasting over an hour while we haggle over which services and accommodations the school should be supplying for my kids.  The thing to know about IEP's is that they are sort of like the IRS....they will not make it easy for you to get the most you can.  You have to dig, and work, and fight for the best.  I have been blessed to have a best friend who works in special education and can give me all the tips I need to make the most out of the IEP experience.  Between her expertise and the ten years I've been in the IEP game, I feel like I have a pretty good handle on what to do to get the best education for each of my children.  

A few years ago I took an English comp class at GRCC.  The first paper I wrote was on the IEP process and in honor of Aidan's most recent (and thankfully simple!) IEP, I thought I would post it.  Mind you, this was written a few years ago and some things have changed about the IEP (such as the fact that the parent no longer needs to sign it and the fact that it is done online now) but the basic facts remain the same. 

A Parent’s Guide to the IEP

            I sat down at one of the few adult-sized tables in the building and greeted everyone already there.  While waiting for everyone else to arrive, I signed in and made small talk with the Resource Room teacher.  The school’s new speech therapist was in attendance and seemed taken by surprise at my knowledge of the proceedings and the ease with which I tossed around their own special brand of jargon, Special Ed speak.  The therapist made a comment about how I must be a pro.  Not to brag, but I am.  As a parent who has two children that require a little more assistance than normal in school, it’s practically a requirement to be well versed in the Individualized Education Program, or IEP.  An Individualized Education Program acts as both the building blocks and the structure that form the education plan of a special needs child.  I look at the special education arena as a labyrinth to be traversed, with many twisting turns and false starts but with the important end goals of the best education and chances in life as possible for my children.  All a parent needs to get through that maze is motivation; knowledge, a glossary of acronyms and a good roadmap will come with time and practice. 

            The entrance to this particular maze simply requires the recognition and admission that your child possibly needs additional help.  You may notice that your child is struggling to read at grade level, or taking a large amount of effort to put even two coherent sentences together while writing.  A parent’s intuition is rarely wrong and in any case, a little overreaction in this area is not a bad thing.  So take note of any concerns you may have and bring them to their teacher.  Please keep in mind that teachers often feel overwhelmed at the needs of all of their students, so while it may seem as if they are dismissing or ignoring your concerns, that is not the case in general.  In almost any school setting, and definitely in the public school forum, students can “fall through the cracks”.  Persistence eventually pays off though, so stay dedicated.  You will eventually have the undivided attention of your child’s teacher.  Once you have explained your concerns to the teacher, they will begin the process by addressing these issues during a team meeting.  A team meeting is generally a regularly scheduled occurrence that is attended by most of the teachers, special education and administrative staff.  It is where they discuss student issues and any educational concerns they may have.  The end result of this meeting is a general consensus that your child will be tested to verify whether or not they qualify for any special education services.  These types of services cost the school districts money that they can ill afford in this day and age of the budget cut.  Therefore, they must have proof that a child truly needs a service in order to provide it.  The testing and qualification process will not happen overnight, so be patient.  For both of my children, I waited an average of two months between requesting testing and sitting down for the first IEP.  Many schools share speech therapists, psychologists, and occupational therapists with several other schools in the district, so scheduling a time that works for everyone involved can be quite a balancing act.  Once the testing is completed, the educators will meet again to determine the best plan to help your child succeed at school. 

            The IEP is the culmination of the testing, its results, and the plan of attack that your child’s school has prepared.  The first IEP is always longer and more detailed than the standard follow up meetings you will attend each subsequent year.  In this first IEP, you will get to meet the educators that will be working with your child to assist them in their scholastic career.  Depending on which specific needs your child has, you may meet a speech therapist, a school psychologist, a social worker, an occupational therapist, or a resource room teacher.  Once the introductions have been made, you will be asked to sign in on the IEP form to verify that you attended.  Since the IEP is part of the Individuals with Disabilities Education Act, it is subject to guidelines and requirements as mandated by law.  The paperwork used in an IEP follows a standard format that outlines the team report, your child’s eligibility and present level of academic performance, the accommodations and assessment provisions they will be receiving, and the goals and objectives that the educators have committed to helping your child achieve.  There is also a section that outlines the actual special education programs and services that your child has qualified for. 

            The IEP team report basically summarizes what the team has determined from the test results.  The alphabet soup of acronyms in the special education world can be quite intimidating.  To be told that your child has a primary qualification of OHI with a secondary qualification of SLD makes you wonder if what your child has is contagious or possibly fatal.  Once you know that your child is simply qualified as Otherwise Health Impaired (because they, for example, have a medical diagnosis of ADHD) and that they have a secondary qualification of a Specific Learning Disability, you will feel relieved to find that it isn’t really as bad as it originally sounded.  The team report is also where your child’s strengths and your concerns are listed. 

            After the team report, the IEP usually follows with your child’s present level of academic performance.  This is where the team members comment on your child’s current functioning level of academic achievement and performance.  This area can also be intimidating if written properly since they should be quoting the state codes of requirement for your child’s grade level content expectations (GLCE) and explaining why your child does not meet those requirements.  Also listed here will be their observations based on the formal and informal assessments they have done on your child.  The more detailed this area is, the better.  It shows that the school is committed to being thorough with each child while assessing them and providing assistance as needed.

            The next portion of the IEP is one of the most important sections.  It is where the team members list the supplementary aids, accommodations, and assessment provisions.  Basically, this is the roadmap to your child’s success.  If your child struggles with writing, this area may outline the need for a scribe or a word processor.  If they wrestle over math, maybe this area will allow for the use of a calculator or adjusted math assignments.  The assessment provisions also provide some relief in the form of the standardized testing.  It may allow your child to be in a small group during standardized tests, or let them have the test read to them.  The team members can write in the need for frequent breaks while testing, distraction free settings or assistance in filling out the bubble forms.  In the case of my children, this is the section that I have memorized.  It provides me with the ammunition that I need to ensure that my children are getting the most out of their education.  This section gives parents the legal framework to make sure that their students are given every opportunity to succeed. 

            The final portion of the IEP focuses on the goals and objectives that the team has put into place to assist the student to progress in their general curriculum or to help them in meeting their educational needs.  If your child has more than one area that the team feels they need support in, each area will have its own goals sheet.  The goals and objectives sheet gives a basic outline of each goal that has been set for your child.  It will also act as a progress report during the course of the year when report cards are sent home.  In general, on the progress report each educator will make notes about how your child is progressing and letting you know of any strength or weaknesses they feel are important. 

            By law, the school must have a signed IEP every year, and it must be signed on or before the date of the previous year’s IEP.  I would highly recommend keeping copies of each IEP and progress report as you receive them.  It is a helpful tool to show you the progress your child has made since they’ve been receiving special education services.  It never hurts to also have the IEP’s as a reference in case you have a question on whether or not your child should have had to take a timed test, written an essay without a scribe, or any other topic that was covered on the IEP.  After the initial IEP, the subsequent years are relatively simple and routine.  Every three years, the school must reevaluate your child to ensure that they still need the services they are receiving.  It is a success worth celebrating if they deem your child no longer needs extra assistance in a particular area.  That means that the IEP served its purpose and you, as a parent, have done your job.  Also, if at any time you feel that your child needs additional services, you are able to request them.  They will evaluate the appeal in a similar fashion to the original testing request and then determine whether or not services need to be added to best suit your child and their academic needs. 

            Surprisingly, I have often had teachers tell me how amazing it is that I am such an advocate for my children.  That statement gives me mixed emotions.  On one hand, I speculate whether it indicates that too many parents do not fight for what their children need.  On the other hand, I wonder if the word “advocate” is their way of saying “pain in the rear parent”.  Either way, I know that if I do not support my child in their scholastic career, no one else will.  If being an advocate for my children requires me to learn the acronyms, definitions and the inner workings of the Individualized Education Program, it is well worth it.  Learning the basic layout of the IEP and asking questions are two of the best ways to make sure you are well equipped to help your child attain their personal best.  Keep in mind the end goal to that special education maze and all of the knowledge and details will fall in line.  Stay in frequent contact with the educators that make up your child’s team and always monitor their IEP progress reports.  Remember that the tools to provide your child with the best education possible are available; they just may require you to learn how to navigate the mysterious world of Individualized Education Programs in order to do so. 

 

Friendship Therapy

I woke up this morning feeling blue, with a lot on my heart and mind.  Then a household repair issue popped up that just about sent me over the edge.  Have you ever had one of those days where you feel like you're on the edge of a cliff and just the slightest thing can send you plummeting off?  That is me this morning.  My poor husband could tell I was upset but I didn't want to talk.  You know those moments...if you actually speak you're going to cry?  Yep, again, me this morning.

Since I couldn't speak without crying, but I felt like I was going to explode if I didn't talk to someone...I sent a text to my bestie.  Ahhh, what blessed relief.  I spent some time venting and crying and then soaked up her responses.  I was again reminded of how God blessed me when he brought her into my life....over and over again.  Somehow, over the years, we've had a few distances (where we missed a lot of the important stuff like babies being born and weddings!) but Lea always found me again.  And for that, I am eternally grateful.  

This picture says it all!

Brain Fog

One of the many joys of Sjogren's Syndrome is a side effect called "Brain fog".  Brain fog, according to this article, is a "condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting ‘brain fog’ into an Internet search engine. The closest term would be ‘mild cognitive dysfunction,’ but this encompasses a wide spectrum of often subtle changes. Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally."  

Many SJS patients complain of brain fog and it manifests in varying ways.  Prior to the onset of all of the meningitis, I never really had any memory problems.  In fact, most people would have said I had a fantastic memory.  After my first bout of meningitis, where I lost consciousness for a few days, when I first woke up my speech was impaired and my memories were sketchy.  I now consistently have problems with word retrieval and definite issues remembering things.  If my husband is not going to be home when I leave the house, he calls to make sure that the stove is off (I now regularly forget to shut it off), the light is on, the door is locked, etc. 

Yesterday was a perfect example of brain fog.  As part of our homemade life, I make two loaves of English muffin bread every week to have on hand for breakfast.  I mixed up the dough, put them in loaf pans to rise and popped them in the microwave to avoid drafts.  An hour later, I went to grab the loaves and wouldn't you know, they were practically as flat as a pancake.  I had forgotten the yeast!  How I could have forgotten the most vital ingredient in bread is beyond me but I wasted a ton of flour and some time just to prove that SJS can strike at any time.  Lucky me.