Weekends are for Laziness

Thursday afternoon, I went for my recheck on my left big toe.  I had it permanently removed this time.  I've had nothing but problems with the first two toes on each foot for years now and have had them removed about five times each.  If any of you have had a toenail removed, you know the process is not fun at all.  I'd have to say that the surgical process isn't much different getting it permanently removed other then them jamming phenol under the nail bed.  I did kinda feel the procedure because I vape so much that the nicotine didn't fully numb me, but still proceeded anyway.  I will say that the healing process is much, much different with a permanent removal than a standard removal.  It looks a whole lot worse before it starts to look better and the pain takes a lot longer to subside as well.  It didn't help that I was starting an infection.  So, the doctor put me on oral and topical antibiotic.  It doesn't feel too bad today, but still having some slight pain.

My infusion at the hospital went well on Friday.  I was extremely impressed by the attentiveness of the staff.  They treated me like a celebrity - wanting to know if I wanted my feet up, if I wanted a pillow and/or blanket and if I wanted a drink and/or snack.  They were very kind and very accommodating.  I do feel a little better since the infusion.  I have three more infusions and then I figure out what the next steps are going to be with the doctor.  I'm on my last bar on my vape and I think I will be done with vaping.  I've thought about quitting a few times recently, but could not bring myself to do it.  I know it's time for me to quit and I have to find the strength to just do it because I know that it's not benefitting my medical situation at all.  For one, nicotine combats chemical levels of certain medication such as Cymbalta which I'm on for anxiety related to my chronic health issues.  It influences dehydration and it can also make absorbing vitamins a challenge.  All things that I'm having issues with.  It's so much easier said than done to quit, but if I want to fix my medical conditions, I have to be willing to change.

I'm also going to start being stricter with my diet.  I've been consuming way too many carbs for my liking lately.  I wrote a list of foods that I can have so that grocery shopping trips will be less daunting.  I'm finding that if you are truly eating healthy, there really isn't much variety and it requires consistency.  Then I had a thought last night.  If I can redundantly eat the same unhealthy fast food, I can do the same with healthy food.  Once my toe is healed a little better, I'm going to start some regular low impact exercise a few times a week.  Ultimately, I'd like to lose a total of about 130 pounds.  My doctor would be happy if I could just get down to 170 pounds and while that is a great starting goal, I know that I want to lose more if I can help it.

We had the tree guys here on Friday and they did a lot of work for us.  We had them take out a tree in our yard that uprooted, remove two giant bushes in front of the house that we were having a hard time maintaining (and now you can actually see the front of our house now), trim another giant bush on the side of our house and trim the gigantic tree in our backyard.  The yard looks much, much better now.  They were here all day Friday, working their asses off and were reasonably priced!  Today I made meatballs in the crockpot with country gravy and we will be having green beans with it.  I have butternut squash and Jay has mashed potatoes.  I have to finish the laundry and take a shower.  After that, just have plans of relaxing for the rest of the night.  I think I may finish reading the rest of The Let Them Theory by Mel Robbins - book review to come.

I hope everyone has a great rest of the weekend and wonderful week ahead!   

Me Oh My...

Looks like I came here again just to say how much I absolutely suck at keeping up with my blog. 😒

Just kidding.

Well, I have quite the life update for ya'll.

So, if you have read any of my past posts, you know that I've been dealing with autonomic dysfunction for about a year and a half now.  It's a journey that hasn't been fun to say the least.  At the beginning of this year, I started seeing a psychiatrist due to the relentless stress this invisible illness has been putting on my body.  I also got diagnosed with mild sleep apnea this year as well and now I sleep with a CPAP machine.  The psychiatrist put me on Cymbalta three times a day and it was rough adjusting to the medication at first, but once I adjusted to both the Cymbalta and the CPAP, my autonomic episodes have become less severe in intensity.  Unfortunately, I'm still having them and the frequency and duration varies.  However, for the most part, they usually don't get too intense but the lack of energy has been so awful that I've been bed bound a lot which has lately prevented me from being able to go to work.  THAT'S A HUGE PROBLEM!

My family doctor has truly been a saint at helping me through this.  It's very difficult to find doctor's that want to take on this case due to the complexity of the condition.  The nervous system can malfunction for countless reasons and it takes awhile to pin point exactly what is causing it to freak out and want to shut down.  I've already been denied by a geneticist and an immunology specialist, so there's that.  My primary found a genetics company that is in the process of sending me a testing kit to bring to the lab, so they can draw my blood and test me for Ehlers-Danlos syndrome which is a 17 gene analysis.  I start going for two hour infusions this Friday, every Friday for about a month.  The first session is just lactated ringers and B12.  Doctor wants to take it slow with additives so that I'm able to identify which vitamins will make a difference in stabilizing me.  Next month, I have a consult with the neurologist and I'm hoping because they deal with the autonomic system, that they will be able to help me figure out exactly what is wrong...or in the very least, guide me in the right direction.

I still need to be tested for Mast Cell Activation syndrome as well.  If all else fails where I live, I may have to travel out of state to seek help from a specialist but we are trying to exhaust all of our options locally first.  I'm hoping that the infusions will at least make me feel stable enough where I can maintain working without needing to be out anymore.  It's been rough for sure on that front.  If the infusions help drastically, there many be a near future discussion with a general surgeon about placing a port for regular infusion purposes.  From what I've been told, it's extremely difficult to convince a surgeon to place a port for the sole purpose of hydration and micronutrients.  Here is the case that I'm building so far:

I've been dealing with this condition for about a year and a half now.  I've had three E.R visits prior to starting Cymbalta and the CPAP which have helped considerably, however, I'm still having significant autonomic flares that as of late, make it difficult for me to go to work.  I drink approximately 120 ounces of water daily as well as I have tried vitamin supplementation orally for my deficiencies to no avail.  As far as my peripheral veins go, I'm a difficult stick and even more so when I'm dehydrated which has been a consistent battle.  I also have very tiny veins as well.  My GI tract is compromised which I believe is causing malabsorption issues.  Another reason that I believe this to be true is because my stool often has fatty deposits around it which tells me that my body is not breaking down fats properly.

Now, if the infusion trial were to drastically improve my quality of life and stabilize me, my goal would be to bypass the GI tract in order to sustain properly hydration and vitamin levels to be able to function, especially if this were to be the only way to keep my quality of life maintained.  I understand the risks associated with said port such as risk for infection.  I understand this even more so than the average patient because I work as a Suture Specialist for a medical manufacturing in a clean room where everything needs to remain sterile.  Also, each time I go for an infusion, it's a $200 co-pay and $800 a month is not financially feasible for me long-term.  Self-administering infusions would be much more cost effective for me in order to maintain my health.

So yeah, there's that so far.  This journey has been hard work.

I was thinking about renaming my blog to something like, "Chronically Tinisha" or something similar, but then I realized that I don't have plans of being chronically ill forever and I never really wanted my blog to be all about sad, depressing stuff but as of late, that's been my life.  At least I'm being real, right?