Thursday, September 4, 2014

Allergies, Headaches and Brain Fog

It has been a couple of rough weeks for us....
It began when I developed an allergic reaction (rash and itchy) from one of my medications.  I immediately had to stop all medication and slowly wean myself back on until I experienced the symptoms again.  Confusion arose when I experienced reactions the day after I had introduced a new medication.  Meanwhile, I had already taken a dose of my next medication so I struggled to figure out what was causing the reaction.  I was not given much direction from my LLMD in Buffalo so I stopped and started medications using only my intuition as a guide (which apparently fyi is not entirely reliable...)  It took two weeks of playing around with my medications to figure it out - the pharmacy had switched brands on one of my main medications (Mepron - the parasite med) and I was allergic to something in the ingredients!  Mepron is a difficult medication to get a hold of, and extremely expensive.  I have found a new supplier of the original brand but the cost is double what it was.... I have weaned myself back on all my medications and am now taking the new (original) Mepron again.  Oh, and by the way, the doctor (as well as my family doctor) finally told me that I should really take two days on each medication before introducing another - If only I had been told that from the start!

Meanwhile..... Because I have been off the medication for a few weeks, I have started developing some intense symptoms again.  My ears are blocked almost constantly, my pain levels have increased as well as cramping and muscle twitching.  I am constantly exhausted and fatigue more quickly than I have in the past two months.  Thankfully I am still a lot more stable physically (less wobbly joints) than I was prior to treatment.  Yesterday I had heaviness in my chest again, off and on all day.  Most of these appear to be babesia (parasite) symptoms returning....

I have terrible brain fog which causes trouble with concentration/memory and processing information.  I am again no longer able to read as I can't process what is being read so I will re-read a passage over and over again without understanding what I have read.  This may possibly be a symptom of another co-infection that the doctor suspects I have (Bartonella).  For the past 10 days I have also had constant moderate-severe headaches.  As we are receiving little direction from our doctor, we have been trying to figure out ourselves the cause of these constant headaches.  It could be a flare-up of symptoms as a result of being off my medications.  We thought it may be sauna-induced as I went a little enthusiastically into a sauna regiment and may have shocked my body a few days in a row.  It may also be an expected 'herx' reaction due to an introduction of a new antibiotic this past week, causing an overload of toxins in my brain.  It feels like a guessing game sometimes.....

We are struggling with the lack of communication experienced between us and our doctor.  We are often left in the dark, the doctor appears to change things on a whim and I have found that I need to do most of the research myself, which I do not have time or energy for at the moment.  We are not confident in the care I am receiving and will be seeking extra support elsewhere.  We see Gods work in leading us to this doctor.  We were able to get in for treatment immediately instead of having to wait the standard 3 month period with another doctor.  Because of certain red flags we have been counseled to get a second opinion and will prayerfully put our needs and concerns before God and follow a new path should it open up for us.  Please continue to pray for a blessing upon treatment, your prayers are so precious to us and much needed as this continues to be a very complicated, multi-system disease and there is no simple solution to treatment.
 "Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much." James 5:16

I personally have been feeling very overwhelmed and out of control and feel like I am always busy but never accomplishing anything worthwhile.  We continue to be very grateful for all the help we are receiving, both physically, through encouragement and prayers and financially.  We would be in very rough shape by now without our church and family.  Thank-you all! God has shown us the richness of what He has provided for us in the network of believers.....
"Bear one another's burdens, and so fulfill the law of Christ" Galatians 6:2

This was a very disappointing and discouraging couple of week for us.  We were really hoping and working towards having our two youngest children at home again with us in time for school to begin - what an exciting event for Alanah who begins Kindy!

Because I am not functioning at a very high level (I had to ask a friend to drive me to Buffalo which is totally out of character for this independent chick...) I am still unable to take care of the children here at home.  I have very much struggled with wanting to have them home and knowing that I can't provide the care they need at the moment.  I found it difficult emotionally to attend the school assembly (although I was very thankful to be there) and it hit me how out of touch and uninvolved I have been for the past few years.  It makes me sad that our children are not able to experience regular family life with ordinary struggles and adventures.

We determine time and time again to continue to take one day at a time and give this over to God, trusting that He will continue to take good care of our children while I am unable.  We understand that this is also His will for our family so it is comforting to know that if He sends it He will make it work for good in our lives and in the lives of our children.  We remain so thankful to the Deboer family who are very eager to share our load and take care of Tyson and Alanah as much or as little as needed, on a very flexible schedule.  God is still good and remains faithful, all the time!
"Rejoice in hope, be patient in tribulation, be constant in prayer. Contribute to the needs of the saints and seek to show hospitality." Romans 12:12-13

Eric reminded me yesterday of the poem that has been one of my favourites over the years:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.


.... I took this photo on my way home from treatment 
yesterday - serenity... a gorgeous summer scene in Vineland!

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