Hello world!
Once again, it's been almost a year since I've written anything. I wrote two days before my hysterectomy last May and it turned out I was living with stage 4 endometriosis for 18 plus years. My left ovary was completely destroyed by the endometriosis, so he had to take that and he left my right ovary and covered it in a new medication that will hopefully prevent new growth to grow on it. I'm now having issues with hot flashes and just saw the reproductive endocrinologist NP who specializes in female hormones and got labs drawn and will likely need to start some sort of hormone replacement, but with my medication sensitivities, that can get tricky, and I'd prefer to try something natural first.
"How are you doing?" is a question I'm hearing daily and my answer right now is, "Spiritually I'm great, physically, horrible." There is SO much happening that I figured I'd go back to blogging so I can update here and everyone can come here to check and see what's happening and know how to pray. Obviously, feel free to still check in and talk etc, but this will help me to not be as exhausted re-telling the same information over and over.
So, problem number one is my lungs. (Big surprise there lol) I typically do 28 days of inhaled colistin (antibiotic) and 28 days off. About a month ago I finished up my 28 days on and within a few days my mucus was thick and green again so we got a repeat sputum (mucus) culture and after only two weeks off colistin, started another 28 day course. I have about a week left of that. About 3 weeks ago, I had my regular follow up with my Psychiatrist and I wanted to talk to him about getting off of Lexapro (an antidepressant) because Jord and I have been in biblical counseling for about a year now with a couple from our church who are going through the process to be certified ACBC (Association of Certified Biblical Counselors) counselors. (If you want more information or to find a counselor near you, Check out THIS Link! ) We started counseling just for all thing things we have walked through, especially in the last 13 years since my first drug induced psychosis when I almost died in December of 2010. (That story is actually linked on the side of the homepage of this blog). Anyway, we started talking and because all of my psychosis episodes directly followed medication reactions, he brought up getting off Seroquel, which I'm mainly on to help with sleep since my brain was damaged in 2010 from Prednisone and Levaquin. I was 10-12 hours away from dying then. He offered a new med, Trazadone, in it's place which is an old antidepressant that they use for sleep now. I started transitioning off of Seroquel and onto Trazadone and things seemed to be going ok, aside from getting less sleep initially, which was to be expected. Sunday, April 2nd, I knew something was wrong and messaged the doctor in the portal as I felt like I was headed for another vestibular or balance system injury. Once I got to church, I realized I wasn't headed for it, it had already happened. I walked into the foyer at church and people walking by made me feel like I was on a raging roller coaster. It's a full on vestibular injury (if you want to learn more about that Click THIS link ) so I have constant vertigo, extreme light sensitivity, occasional tinnitus, ocular or focal migraines, brain fatigue, difficulty concentrating and coming up with words and a whole host of other issues. Providentially, that Thursday I was scheduled for my annual check up with my PCP and they got me into a physical therapist that has training in vestibular rehab that afternoon at Focus Physiotherapy, which seems to be a Christian company, as part of their mission is to glorify God! Anyway, I couldn't even focus on the head of a pencil eraser for 5 seconds without blinking, starting to have tremors, getting extremely nauseous and making the vertigo a whole lot worse.
Tuesday the 11th, I had my annual checkup with my sinus ENT at UAB and my lung doc had me do lung function tests since I was down there anyway and with the vestibular injury, I was getting thick and green again even on inhaled antibiotics. The two IV antibiotics I've been taking since we moved here aren't really an option because Meropenam leaches Depakote for your system, which is one of my sleep meds and I need as much sleep as possible right now for my brain to heal and the other is IV colistin which will not only make my vertigo worse, but has other nasty side effects and is a last resort drug. My lung functions are down to 58, 61, and 63 from an average of 67, which really isn't surprising, all things considered. I "happened" to see Dr. Solomon (lung doc) as I was leaving my PFT (lung function testing) test and he asked how I did and said we'd wait for culture results and decide what to do from there. The translation of that is we are going to see what my Pseudomonas is sensitive to and what IV antibiotic would best treat it and I'm guessing (unless God graciously and mercifully allows my pseudomonas to be sensitive to a medication I can take without any issues--please pray for this!!) I will be hospitalized for about a week to start IV antibiotics under close observation, but we shall see what the Lord has. I'm hoping and praying it doesn't come to that, but God knows and I can trust Him and His perfect plan for my life.
In addition to all this health stuff, my dear friend and sister in Christ, Candy, was just diagnosed with stage 3 breast cancer and is getting a port placed today and will start a very difficult 20 week chemo regimen followed by surgery. She is in Alaska and it is very hard to not be able to hop on a plane and go be with her. I'm so thankful I can cry out to my Abba Father, my Daddy, the King of the universe who hears our cries, our groanings, our sighs--who knows our hearts better than we do and as Psalm 61 says, "lead me to the Rock that is higher than I when my heart is faint and I am overwhelmed."
Grace Community Church of Huntsville is once again surrounding us with love and support--meals are being made and delivered to us through May (unless I get better sooner than I anticipate, but the last severe vestibular injury took months to recover from) and then we'll re-evaluate for June. They are setting up a sign up to drive me to appointments--I ended up with 5 this week, 2 being down in Birmingham at UAB so I'm exhausted, physically and emotionally. Had my first meltdown about everything last night but thankful for faithful friends who love and pray and encourage me. Another friend here is doing my weekly grocery shopping and others are coming to walk the dogs, although Blue just turned 5 and is calming down and I took her on a walk with my walker and her instincts were just incredible. I'm actually going to be working with the breeder to help me teach her how to help me more right now.
I need to get going as I have a PT appointment early this morning but thank you for all the love, prayers, and support--and please remember Jord extra in your prayers as watching me suffer is painful and discouraging and hard for him--I'm thankful for the godly men God has placed in his life here at Grace and we can't say enough about this sweet body of believers that truly lives out the one another's that Christ calls us to in His Word.
In His Mighty Grip,
Rachelle :)
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