Before I start my blog post for today, I have some friends who are in need of prayer. Nathan and Tricia, from CFHusband, have been requesting prayers for Tricia, who has struggled for her whole life with a disease called Cystic Fibrosis. Tricia has been having some rough times healthwise. Please keep them in your prayers, and by all means visit Nathan's blog cfhusband.blogspot.com
On to my ridiculously crazy life..ugh I am so frustrated.
There are tons of different reasons that I am frustrated, and I'm tired of everything right now. So. Damn. Tired.
Pardon my french.
I'll start with the past few weeks, which have been extremely difficult. I did end up going for a Radiofrequency Ablation for my back on the 31st of May which actually went very smoothly. I hurt a lot after the procedure but it wasn't anything Vicodin couldn't keep in check. They only did the procedure on the right side of my lower back and scheduled the next procedure for today. End of story.
I thought the procedure would go just like the last one.
Boy was I wrong!
The nurse who blew my vein last time she stuck me (I had a seizure after that...which is an entirely different story) started my IV. I was a bit apprehensive about this, to put it mildly. She wanted to make sure nurse A was in the room in case something were to happen because "I know you don't like IV's" I very politely replied that I do not have problems with IV's normally. That one day was the exception and for some reason they decided that I should still have that nurse start my IV. This baffles me even now, thinking back on it. I am picky about my care for very important reasons- one being the fact that I am medically fragile so it is extremely difficult to trust anyone with my care, especially when it's something like an IV, which leaves me extremely vulnerable for several reasons. I did allow said nurse to start the IV and it didn't go terribly. Dr. S came in to talk to me about the procedure and a few minutes later I was headed to the OR.
When I have a Radiofrequency ablation, I need to be placed face down but before I am on the table, the OR nurse sets me up with oxygen per cannula and a blood pressure cuff. They closely monitor my vital signs during procedures for many reasons and it's not just me they do it for. They started the procedure with 1 of Versed and Fentanyl. I was a bit apprehensive about having only one of Versed because the last time they gave me two. Dr. S began the procedure and yes, it did hurt. I started feeling a little out of it and shaky. Then my arms started shaking, I heard the nurse yell my name and then I was seizing, just like that. From what I understand, the seizure lasted only ten seconds because of Dr. S's quick thinking (thank GOD). He stopped the seizure by giving me another dose of Versed. No one really asked me if I wanted to be sent to the Emergency Department. I didn't really want to be sent out, but they decided to call the ambulance. My grandma did try calling my grandpa, who was in the car with my younger cousin and my brother and sister. The pain clinic made the hasty decision to call the ambulance. In the ambulance I had my blood sugar taken and it was 76. That is quite low, but not low enough to cause a seizure. Vital wise I was dealing with elevated blood pressures and pulses.
I can understand why the Pain Clinic did this, however it wasted many hours that could have been spent at home recovering in the Emergency Department. My poor brother, sister, cousin, and grandpa were stuck in the waiting room of the hospital. In the ER, they insisted on giving me another liter of IV fluids (I'd already had half a liter) as well as food. The food did not go down well and I became extremely nauseous after only a few bites. So, they decided to give me Benadryl, Reglan, and Toredohl. After those medications I felt extremely on the edge and anxious to the point that I could not sit still nor could I sleep. I was postictal just short of an hour and in serious need of sleep. They ended up giving me Ativan to calm my nerves and it did help, eventually. I was finally able to settle down a bit, even though I had to pee numerous times because of the extra fluids. I wasn't really able to eat much more. I had less than half of a sandwich and almost half of a piece of cheesecake. I was released and we finally got home after two this afternoon.
The doctor in the Emergency Department greatly frustrated me. Dr. S told him that he witnessed a seizure but he told me outright that he believes this was brought on by autonomic dysfunction. I have dealt with this before, and I know an autonomic spell when I see one, or in this case, experience one. What he said did have some grain of truth, I'll give him that. However, I had a seizure. I know I have. And I'm sick and tired of people trying to say otherwise. The people I trust have identified every single "spell" I've suspected to be seizure activity as seizure activity. What's more, these people are very often medical professionals whose observations are right on target. He told me to schedule an appointment with Dr. G as soon as possible. I see him tomorrow afternoon. The ER doc decided to increase my HS Lyrica dose to 50 mg. We shall see how that goes.
I am so beyond fed up. I've been fighting like hell for years to try to get people to help me get answers and give me more quality of life. Obviously this has been a moot point most of the time. I'm still fighting everything with what I have left. I don't have much energy left, and I don't know how much longer I will be able to deal with all of this. I am frustrated, furious, overwhelmed, tired, sad, grief stricken and many other awful feelings. I don't know what more to do. I keep trying to advocate for myself and it does very little. I see no results.
I deal with complication after complication. Countless appointments, procedures, medications, just a lot of things no one my age should have to deal with. No matter what I do, I constantly have to fight one thing after another. I figure one thing out and then something else comes up. Sigh. I realize that when it rains it pours but this is absolutely ridiculous.
I talked to the Deacon of my parish very briefly. He told me that what I experience here saves me from time in Purgatory. Fair enough. But, there comes a point in time where you have to ask yourself how much more you are willing to deal with. There comes a time where you are begging, pleading, to God to give you a break. Instead, more things happen. I know that God does not cause my suffering. I know that it hurts Him to see me hurt in this way.
I also know I have guardian angels who know all too well what I am going through. And when I do think of them, I think of this prayer.
Angel of God, my guardian dear,
To whom God's love commits me here,
Ever this day be at my side,
To light and guard, to rule and guide.
On that note, I figure I have rambled long enough. I am anxious to see what Dr. G wants to do for intervention. This shall be yet another adventure I never really wanted. Sigh
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