Friday, July 27, 2018

Bumps In the Road

I met with the rheumatologist this past week and he started me on Plaquenil, an anti-malaria drug/ DMAD (disease modifying anti-rheumatic drug.)  It is very slow acting and I may not notice if it's even working for 6 months or so.  It is supposed to help with fatigue (how long have I been complaining of that?) joint pain, inflammation, etc.  I am not myself anymore.  I read through the previous posts over the years and I don't even recognize myself.  I've gained 25+ lbs, I'm irritable, I've grown even more tired, I take a crapload of meds, I am having memory issues, etc.  I actually sat down to write about how I was diagnosed with Sjogrens and I looked back to find my last post was about just that.  I just don't remember.  I don't remember how to get places that I've been to 6-7 times.  Then, when I get there, I don't remember even being there before.

Everything got really bad about 5 years ago when I started getting migraines.  I was sent to a neurologist who has done nothing to determine the cause of my headaches. I've tried all of the preventative meds along with Botox injections for migraines with no relief.  I get by with saving up my Imitrex because I only get so many per month and sometimes my headache days exceed my pills. I had a brain MRI that showed white matter abnormalities (WMA) and they blamed it on the migraines.  I still don't know why I have almost daily headaches and frequent migraines.  My rheumatologist now says that the WMA can be a neurological manifestation of Sjogren's, but I don't know what that means.  My blood sugars have been out of whack for awhile and I was sent to an endocrinologist.  My thyroid is enlarged with nodules and if one continues to grow, I will be having my thyroid out next year.  I was put on Metformin and Synthroid.  My restless legs have continued to bother me, but I don't know the cause.  Then my resting heart rate went to 120-130 and I had to go to a cardiologist who put me on a beta blocker.  All the while, I still have no idea why my heart rate increased. Because of my fatigue, I was sent for a sleep study a few years ago that showed moderate sleep apnea.  I had to start wearing a CPAP at night that I hate.  I have random, severe piercing ear pain and dizziness and I don't know why.  I don't know why I've gained weight and why I'm so bloated at times that I can't breathe.  My thyroid levels are normal, they say.  I just need to go on the whole30 diet or paleo or low fodmap or AIP or keto or low histamine diet, etc. Most days I don't even know what to eat and I'm too tired to think about it.  About a year ago, I developed horrible insomnia.  I can get to sleep most nights, but I can't sleep past 3 am. Most days I survive on 3-4 hours of sleep.  It's a good night if I can get 6 hours.  I've told doctors and they've, of course, prescribed more meds.  The meds  help me go to sleep, but not stay asleep.  And I'm left not knowing what has caused it.  My diagnosis of Sjogren's was actually a welcomed relief because it is the first answer that I've had in many, many years.  Whether it can explain everything. . .I don't believe so.  But, it's a start.

Anyway, I don't mean to go on and on and to be so negative.  I just needed to vent tonight, I guess.  And this is the reality of life.  Most people struggle.  They just don't let on how much.  I pray every day that this will work or that will be the answer I need. But, I often come up empty handed.  Please, if there are any of my prayer warriors left. . .pray for me.  Pray for my girls because they need a strong, healthy mom.  They deserve that. . .not whoever this is that I am.  Pray for my husband and pray for my family and friends around me.  Pray that I get from them what I need right now and that they know how to help.  And then say another prayer for my girls again because they deserve everything that is good and wonderful in this world.

Okay, well, I'm going to go to bed in hopes to sleep tonight.  I may need to vent on here again more frequently.  It sure helped me through a dark time years ago.  We all go through bumps in the road and my road is in dire need of fixing and repaving.  Thank you, friends, for listening.  I'll get through this in God's time. .