Monday, September 15, 2014

Improvements

Good news!
My brain fog and headaches are lifting and I am able to function at a higher level again.  Thank-you Lord!!  I found it very frustrating to be more mentally incompetent than I usually am, so I am thankful for the relief of being out of the hazy daze of my severe brain fog.  I am also slowly regaining strength physically, although I am not nearly back to what I was before this downturn....

What has changed in this past week?
As we have been taught over and over these past few years, nothing has changed that we have controlled....God chooses to open and close doors in our lives in keeping with His good and perfect will, in His timing and not according to our agenda or as a result of our achievements or good decisions.

After letting me know that I am to blame for the complications in my treatment, my Lyme Doc has increased my antibiotic doses again so that some of them are doubled.  We have already seen some improvement in my white blood cell count so that is encouraging.  It seems that the Lyme and co-infections took the opportunity while my immune system was further down (due to an allergic reaction to one of my antibiotics) and caused the intensity of my symptoms to increase.

We are so thankful for this positive turn - we are aware that the process of treatment is up and down due to the complex nature of a multi-system disease, as well as the cycle of the Lyme spirochete and all of the classic bumps in the road that I seem to be hitting through this process.  It still took us by surprise though as I have mostly been doing well since treatment began in June.

I have very much struggled over these past weeks with receiving a taste of being 'returned to my body' only to have it taken away again and I have found it a very difficult part of this trial to accept.  It seems to be easier to have no hope sometimes than to have hope and have it feel like it is taken away.  That is why God reminds me once again to hope for eternal things rather than temporal.  I am so disappointed when I base my contentedness on what is happening in my personal circumstances here on earth and my faith and hope waver and falter depending on the events of the day.  Forgive me Lord, for my lack of trust.  By now I should know better.... 
"if we are faithless, he remains faithful— for he cannot deny himself." 2 Tim 2:13

I need to sleep now, so I will sign off but maybe now that I am mentally a little more capable I will be able to fill you in on a few other matters surrounding this Lyme battle soon....ps. Thank-you to my wonderful new Family Doc for being so willing to support me and for helping me out with samples of the wonderful drug called Lyrica - the only one so far that has helped with pain control enough to allow me to sleep some nights almost the entire night without interruptions!!! WHOO!!!

Goodnight.....

Tuesday, September 9, 2014

Facebook Post - Sept 9th 2014

My health has been declining again for the past two weeks after some wonderful results from treatment. We are not sure what this means - we are praying it is all part of the process - we know lyme is cyclical so it could be flaring up and reproducing in my body. I could also be experiencing some worsening of symptoms due to a toxin increase as the bacteria dies off in my body. 

We are trying to be patient and wait it out. It is scary as I see myself sliding back towards the same physical state that I have been struggling with for the past three years. Today was my worst day so far physically since being on treatment. As of this afternoon I am close to being back in the wheelchair again. We decided to take a short clip of my 'walking' as we had not done so in the past and regretted not documenting my symptoms a little better. I have posted it below.  Maybe it will help you all to understand what lyme is doing to my body. 

Please continue to pray for us. We know we can ask in faith for all we need to cope with whatever God puts in our path and are comforted by that knowledge. God has proven Himself faithful in providing that support and anchor for our souls. Please pray also that I can return to being a wife and mother soon, I miss the children and being a full part of their lives. They are in good hands so Lord willing we will all be able to grow from this experience. May God lead and direct us as we continue to search out treatment that my body can handle. 

Thank-you all for your support and encouragement. We have been so blessed and overwhelmed with the amount of help people enthusiastically shower on us! xox


video


Wed Sept 10th - My white blood cell counts are below normal.  We know that this means my body is having trouble fighting something.  We will be seeing the Doc in Buffalo tomorrow and hopefully find out if there is something we can do to increase the white blood cells.  The good news is that we are not shocked as it correlates between the way I currently feel!!  My B12 levels are also extremely high - the upper limit should be 615, mine is 1450 so my family doctor is concerned about this also.  My new family doctor said that this is more than likely caused by over-supplementation - I have been receiving nutritional IV bags with B12 supplements in them so we will also discuss this with our Lyme doctor on Thursday.....

"Though the fig tree should not blossom And there be no fruit on the vines, Though the yield of the olive should fail And the fields produce no food, Though the flock should be cut off from the fold And there be no cattle in the stalls, Yet I will exult in the LORD, I will rejoice in the God of my salvation.…"  
Habakkuk 3:17,18

Thursday, September 4, 2014

Roze Daily Schedule – Sept 3 2014


 .....For those of you who are wondering what I do all day when I am not sorting medication, finding and testing recipes for my limited diet, researching all things Lyme, getting bloodwork done, at doctors appointments, mixing IV bags, making schedules/charts, organizing my home to be more efficient with my limitations (+ severely restricted diet) and interacting with my chidren and hubby 

 ... This is why I do not have time for coffee, to linger at social events or hold lengthy conversations.  It is why I don't email on time or forget to text back.  I apologize if I have made any of you feel like I do not have time for you or am ungrateful for your help, love, support and encouragement or if I have forgotten things I promised to remember.....  I am sharing my daily schedule to help you understand a little.  It helps me keep things sorted when my brain isn't functioning fully or my blackberry calendar decides to delete all of my pinky strings....arrrrhhh!!  I still love you all - I just have a rotten way of showing it at the moment and my own self-centeredness is driving me crazy!!  XOX

6:30am – Probiotics
-          Take IV’s out of fridge
-          Pack Kids/Eric lunch
7:00-7:45 – Get Damon & Alanah ready for school
-          Vitamin drink – kids
-          Teeth brush, hair, clothes
-          Read Bible
7:30 – Antibiotic IV
7:45 – Prepare Brekky
8:00 – Brekky
-          Chaga detox tea – prepare extra for iced tea
-          Vitamins
-          Glutathione IV
8:30 – Oral Antibiotics
-          Warm Sauna – prepare towels, magnesium water
-          Run Epsom salt bath for after sauna
-          Recumbent bike & Blu light
9:00 – Sauna
9:30 – Epsom salt bath
9:50 – Set up chamber, Set up music/sermon, Alarm for 11:00
10:00 – Oral Supplements
-          Hyperbaric Chamber
11:00 – Homeopathic remedies while in chamber
11:30 – Exit Chamber
-          Oral Supplements
12:00 – Probiotics
-          Take nutritional IV out of fridge
-          Prepare lunch
12:30 – Lunch
1:00 – Antibiotics
2:00 – Oral Supplements
-          Nutritional IV – run for 5-8hrs
3:00 – Oral Supplements
4:00 – Probiotics
5:00 – Prepare supper
5:30 – Supper
6:00 – Oral Antibiotics
7:00 – Oral Supplements
7:00-8:00 – Hyperbaric Chamber
8:00 – In chamber – homeopathic drops
9:00 – Oral Supplements

9:30/10:00 – Sleep 8 Herbal

HARD WORK!!!

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:

SERENITY
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.

Amen.

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