What Comes Next?

This illness is sucking the living day lights out of me; I have never felt so depleted and lifeless in my entire life.  I just hope and pray that I get better soon.  I don’t have a ton of time so I am just going to give you a few brief updates on my life. 

You know how they say when you are at the lowest point in your life that you turn to God well I went to church about a week and a half ago and I can’t say that I hated it.  I actually felt comfortable there.  It was an unusual, but welcoming feeling.  I am going to go back. 

In addition, on the 20^th my arm with the PICC line in it had swollen and my instant reaction was to go to the ER to see if I had a blood clot because last time there were two blood clots.  They did run a Doppler ultrasound on my arm, an X-ray on my chest to make sure the PICC was in place and EKG because I was having chest pain, but all “appeared” normal the doctor in the ER declared.  He did say it was swollen but that could have just been from overuse and I am very good about not overusing my right arm so I was very surprised to hear that, but anyways ya know the drill! 

Then I went to my LLMD on the 23^rd, which was an exciting visit because I did not have my parents for the first time and instead I had my friend Taylor with me.  I had a list of concerns a mile long, not even an exaggeration.  Her main concerns were the blood in my urine, the ear infection that I have had all summer (which she thinks my body is not recognizing as an infection because there are more important things that need to be addressed), my Babesia symptoms, losing weight, not sleeping well, and pain radiating from my spine.  So, she kept me on the same protocol but added Bactrim for the ear infection.

Here is the protocol:

Week 1 + 2

            M,W,F : Lactoferrin 500 mg 1 daily and Xylitol 4 tsp once daily (8 days only)

·      Merrem 1g IV twice daily

·      Clindamycin 900 mg twice daily

·      Bactrim 1tab twice daily

·      Mepron 2 tsp twice daily

·      Artemisinin 200mg (4) twice daily

·      DURING WEEK TWO à FLAGYL 500 mg TWICE DAILY on Thursday and Friday

Week 3+4 OFF WEEKS

This is only my antibiotic regiment.  She increased my Ativan at bedtime to one full tab to help with nightmares that are frequent with this protocol and to help me sleep better overall.  Then she also increased my Neurontin to 900mg in the morning/ 300mg midday/ 1200mg pm to help with all of the pain radiating from my spine plus my “absent” seizures.  I am also going to begin dosing Marinol in the morning as well in an attempt to increase my appetite.  I never thought I would have the problem where I would not want food, but I am literally at this point eating to live not living to eat.  I only can taste spicy and all of my taste buds are thrown off.  Everything tastes so different and I just don’t want it; I push it away from me.  In addition, she recommended that I upped my Trazodone dose to 150mg, but I tried that and it gave me a MAJOR hangover effect in the morning so I think I will stick to 100mg.  Has anyone else ever had that affect with Trazodone?  Lastly for the ear infection I was given Astelin nasal spray to try and open my Eustachian tubes, so we will see how that goes!  Wish me luck!  Life is always full of surprises. 

Now enough talk about doctors, time for a funny story so I had this goal before the end of summer to do a split and I finally was able to do it!!!! For about a second when I heard a crack on my left side and of course I pulled my adductor maximus according to my physical therapist.  But I still was able to do it!!! I know I am crazy, but I did my end of the summer goal and that proved to me that I can do anything I put my mind to.  That may not be the best example but still. 

In a previous post I have mentioned my friend Linda being very sick and not having a ton of options left, well I saw her yesterday.  We ran into each other randomly she was in the car and I saw her husband first then I saw her, just lying in the car…looking weaker then ever.  I hopped out of my car even though it was not in a place where I should have just hopped out of my car it was kind of in the middle of the road, but I did not care I just knew I had to do this.  She slowly began to get out of the car and as soon as she saw me she began to cry then I began to sob.  No words had been spoken at this point it was just holding each other and sobbing.  Her husband had stepped a good distance away because it was scary.  We did that for a little while then she told me she was going to Vassar to drop Clancy her son off at college.  “She was being a Mom.”  But what happens after that is what I wonder.  I am scared to death.  I had never seen her so weak; I think of her as my Harrisonburg Mom and can’t imagine her not in my life.  And that solidified a lot of me.  I am asking anyone and everyone that reads this blog to please pray for her.

I feel like I never know what to expect anymore, things just keep catching me off guard. 

“Please don’t judge me, You don’t know what it took for me to get out of bed, look as presentable as possible, face the day & face the world.  You know nothing of my daily struggle.”