Too Much.
The last month definitely needs to be filed under "too much" in my book.
Where did I leave off? Oh, right...might have too much pressure in my brain. Normal stuff.
So I had my lumbar puncture on Friday and then started what will officially be known as one of the worst weekends of my life. Not. Even. Exaggerating. Maybe even one of the worst weeks?
Let's start with the lumbar puncture. I drove there because we basically had to go the same route I drive to work, and it's a nightmare in the morning. Since I'm used to it and have kind of figured out where the good lanes are and whatnot, it was smarter for me to drive there. Randy drove home for obvious reasons, like I just had a needle in my spine and had to remain flat for 24 hours.
I decided not to take a pain pill before the procedure even though my head was splitting from a headache that was just a teensy bit away from migraine level pain. I figured I'd need to be able to feel pain to be able to tell them if they were hitting a nerve or anything in my back. The procedure was super easy and not really a big deal aside from the fact that he was sticking a big needle into my spine and draining out cerebral spinal fluid (CSF). Really, the only painful part of the entire procedure was when he put a few local anesthetic shots into my back. The needles didn't hurt, but the medicine in them burned like crazy. Then, they rolled me onto my side and I asked the doctor if I'd be able to feel it. I knew that sometimes with local anesthetic you could sometimes feel pressure or something, so it didn't seem like a crazy question...until he said, "it's already in."
Oh. So, no? :)
He then informed the nurse that the opening pressure (the pressure before they drain some of the CSF) was almost 21, and a few minutes later he told her the closing pressure was 11. I knew that was a big jump, but I still didn't know what either number meant. He told me that 10-20 is considered normal, so there was more pressure in my head than what is supposed to be there, but by my logic it wasn't too much more. However, it was a little mind-blowing that they reduced the pressure by almost half! That was crazy enough, but then I realized that I could see the ceiling out of the far right corner of my right eye - something I hadn't been able to do for a month! I told the doctor and he told me I needed to let my doctor know about that because he had never had anyone tell him anything like that before.
Next, I had to lay on a stretcher for 30 minutes to "promote clotting" where they had put the needle. Then I had to lay on my back for a minimum of 24 hours. That made Friday and half of Saturday pretty boring.
Funny story: I still didn't realize how high that opening number was until I called my hematologist to give them an update. I had to get their permission to do the procedure because of my clotting issues, so they wanted to know the results as well. When I told my nurse the opening pressure she shouted, "OH MY GOSH!" ...Oh, so that's a lot? Apparently so.
Saturday afternoon I decided to sit up some and my back was in a TON of pain most of the next day. It started aching Friday night when the anesthetic had worn completely off, but it had been hurting me like crazy since then. More pain pills... :(
Sunday was the worst, though. I'll never forget Sunday.
Around 8:30am I heard my phone buzz. I reached over to check it and shot up out of bed, gasping for air. I read the text message at least 3 times before covering my eyes with my bedsheets and crying uncontrollably. I couldn't even tell Randy what was going on - I just handed him my phone. My grandmother - my Mema - had been rushed to the hospital the night before with congestive heart failure and they were still trying to lower her CO2 levels. She was still unconscious and wasn't looking like she was going to pull through at all. I don't know a time when I've felt more helpless. I knew if I flew to Phoenix, something I wasn't physically able to do, and something I knew my doctors would never clear me for, I might not make it in time. I was trying to figure out how to breathe while trying to figure out what was next. I just kept begging the Lord to give us more time. I knew she didn't wish to be put on life support if they couldn't bring her vitals back. I spent most of the day trying to prepare myself for the worst while begging the Lord for the best. It's not that I didn't think the Lord could save her, I just knew that He had the power and sometimes He has a plan that isn't exactly what I always want. I just trusted that He is working for my good.
.JPG)
I think I cried harder that day than I ever have in my life. Poor Randy's shirt was soaked from tears most of the day. I thank the Lord for giving me a partner in life that will hold me and comfort me when my heart is hurting. I just love that man.
Mema is now stable - praise the Lord! and my mom and brother were there with my awesome aunt, uncles and their families. I so wish I could have been there, too, but I had to trust that I was needed at home for a reason. As much as it kills me...
Let's move on to Monday - I went to work in a horrible amount of pain, stayed at work in a horrible amount of pain, and almost left work multiple times from pain. By the grace of God I managed to push through the whole day.
Then, I went to take the mail at 4:30 like I do every work day. Nope. My car wouldn't start. I had a full-blown break down in the parking lot. So much for keeping it together. No pretty tears either...this was definitely an ugly cry.
There were some great things about Monday, though! It was Mema's 82nd birthday and she was able to remember that it was her birthday, and she even knew which one...even if she did think the president was "Joshua Obama". True Story.
So back to my car meltdown -
I called AAA to come tow my car home while Randy came to get me and the tow truck driver was the NICEST guy! His name was Aaron and he wanted to help me try to get my car started before he hooked it up. He tried just about everything. We knew it wasn't the battery, and we were worried the fuel pump had gone out, but he somehow got it started even with all that craziness! AND it's running just fine now! He figured out it wasn't the fuel pump by listening to it? I don't know...I'm not a mechanic. All I know is my car didn't become a heap of scrap that day. I'll call it a win...even if I don't understand it. And I don't.
Randy and I had really been praying our cars would last us at least another year because we can't afford new ones right now. His is well over 200,000 miles and mine is getting really close...I think it's around 179,000? They're 100% paid off, though! Both of us were blessed to have great parents that gifted us with paid off vehicles - THANKS, parents! So we'll drive them until they stop working. Hopefully that will be at least another year away!!! Thank the Lord! He is SO good.
Something is still wrong with it, but we think it will probably be an easy-ish fix and not even close to as expensive as a new car would be.
So since this post is getting really long, I'll just end it by saying that I had a follow up with my neuro-ophthalmologist and he said there is, in fact, too much pressure in my head putting pressure on my brain. Fun!
So I'm on this medication called Diamox (one of the most common medicines for my condition) that fortunately doesn't have many side effects other than it makes me go to the bathroom every 30 seconds (sorry for TMI!), my hands & feet tingle (and sometimes my lips - something I discovered Saturday), and soda has pretty much no taste whatsoever...which is a lot healthier for me anyway :) I'll take those side effects!
Now the big question is WHY is there too much pressure? Something must be causing it. So I'm having to do more tests to figure it out because there are only about 11 known reasons why one would have intracranial hypertension (IH), and all of them suck...
Next step: I have to get an MRV (magnetic resonance venography), which I did this morning, then an ANA (antinuclear antibodies)
Basically, one checks for blood clots in my neck/head that might be backing fluid up and the other looks for things that might show up for cancers, tumors, or autoimmune diseases.
Fun fact: they gave me the actual images, so I have big pictures of my brain! It's kind of interesting to be able to hold up a piece of plastic and see your brain.
Good News: I can see SO MUCH better out of my right eye since I began my medication :)
I go back on Thursday :)
Bad News: Randy gave me whatever plague he had, so I'm really sick with some kind of cold :( It came on so suddenly! I went from a slightly scratchy throat one night, to a pretty sore throat and stuffy nose the next day, to full blown icky the next morning! Now I'm so miserable it hurts to move.
Also, my sweet love is leaving me for China tomorrow :( I hate being without him, but I'm especially going to hate being here sick without him. Although I seem to remember this happening the last time he went to China...coincidence?
Thanks for reading!
I'll keep you posted on my followup after Thursday!
Love you all!
Where did I leave off? Oh, right...might have too much pressure in my brain. Normal stuff.
So I had my lumbar puncture on Friday and then started what will officially be known as one of the worst weekends of my life. Not. Even. Exaggerating. Maybe even one of the worst weeks?
Let's start with the lumbar puncture. I drove there because we basically had to go the same route I drive to work, and it's a nightmare in the morning. Since I'm used to it and have kind of figured out where the good lanes are and whatnot, it was smarter for me to drive there. Randy drove home for obvious reasons, like I just had a needle in my spine and had to remain flat for 24 hours.
I decided not to take a pain pill before the procedure even though my head was splitting from a headache that was just a teensy bit away from migraine level pain. I figured I'd need to be able to feel pain to be able to tell them if they were hitting a nerve or anything in my back. The procedure was super easy and not really a big deal aside from the fact that he was sticking a big needle into my spine and draining out cerebral spinal fluid (CSF). Really, the only painful part of the entire procedure was when he put a few local anesthetic shots into my back. The needles didn't hurt, but the medicine in them burned like crazy. Then, they rolled me onto my side and I asked the doctor if I'd be able to feel it. I knew that sometimes with local anesthetic you could sometimes feel pressure or something, so it didn't seem like a crazy question...until he said, "it's already in."
Oh. So, no? :)
He then informed the nurse that the opening pressure (the pressure before they drain some of the CSF) was almost 21, and a few minutes later he told her the closing pressure was 11. I knew that was a big jump, but I still didn't know what either number meant. He told me that 10-20 is considered normal, so there was more pressure in my head than what is supposed to be there, but by my logic it wasn't too much more. However, it was a little mind-blowing that they reduced the pressure by almost half! That was crazy enough, but then I realized that I could see the ceiling out of the far right corner of my right eye - something I hadn't been able to do for a month! I told the doctor and he told me I needed to let my doctor know about that because he had never had anyone tell him anything like that before.
Next, I had to lay on a stretcher for 30 minutes to "promote clotting" where they had put the needle. Then I had to lay on my back for a minimum of 24 hours. That made Friday and half of Saturday pretty boring.
Funny story: I still didn't realize how high that opening number was until I called my hematologist to give them an update. I had to get their permission to do the procedure because of my clotting issues, so they wanted to know the results as well. When I told my nurse the opening pressure she shouted, "OH MY GOSH!" ...Oh, so that's a lot? Apparently so.
Saturday afternoon I decided to sit up some and my back was in a TON of pain most of the next day. It started aching Friday night when the anesthetic had worn completely off, but it had been hurting me like crazy since then. More pain pills... :(
Sunday was the worst, though. I'll never forget Sunday.Around 8:30am I heard my phone buzz. I reached over to check it and shot up out of bed, gasping for air. I read the text message at least 3 times before covering my eyes with my bedsheets and crying uncontrollably. I couldn't even tell Randy what was going on - I just handed him my phone. My grandmother - my Mema - had been rushed to the hospital the night before with congestive heart failure and they were still trying to lower her CO2 levels. She was still unconscious and wasn't looking like she was going to pull through at all. I don't know a time when I've felt more helpless. I knew if I flew to Phoenix, something I wasn't physically able to do, and something I knew my doctors would never clear me for, I might not make it in time. I was trying to figure out how to breathe while trying to figure out what was next. I just kept begging the Lord to give us more time. I knew she didn't wish to be put on life support if they couldn't bring her vitals back. I spent most of the day trying to prepare myself for the worst while begging the Lord for the best. It's not that I didn't think the Lord could save her, I just knew that He had the power and sometimes He has a plan that isn't exactly what I always want. I just trusted that He is working for my good.
.JPG)
I think I cried harder that day than I ever have in my life. Poor Randy's shirt was soaked from tears most of the day. I thank the Lord for giving me a partner in life that will hold me and comfort me when my heart is hurting. I just love that man.Mema is now stable - praise the Lord! and my mom and brother were there with my awesome aunt, uncles and their families. I so wish I could have been there, too, but I had to trust that I was needed at home for a reason. As much as it kills me...
Mema is home from the hospital now and doing well, in case you were wondering :):):)
All the glory to God!
 |
| This is one of my favorite pictures. It's Mema with my mom and her brothers. They also had a sister, but she passed away before I was even born. I love them all so so so much! |
Then, I went to take the mail at 4:30 like I do every work day. Nope. My car wouldn't start. I had a full-blown break down in the parking lot. So much for keeping it together. No pretty tears either...this was definitely an ugly cry.
There were some great things about Monday, though! It was Mema's 82nd birthday and she was able to remember that it was her birthday, and she even knew which one...even if she did think the president was "Joshua Obama". True Story.
So back to my car meltdown -
I called AAA to come tow my car home while Randy came to get me and the tow truck driver was the NICEST guy! His name was Aaron and he wanted to help me try to get my car started before he hooked it up. He tried just about everything. We knew it wasn't the battery, and we were worried the fuel pump had gone out, but he somehow got it started even with all that craziness! AND it's running just fine now! He figured out it wasn't the fuel pump by listening to it? I don't know...I'm not a mechanic. All I know is my car didn't become a heap of scrap that day. I'll call it a win...even if I don't understand it. And I don't.
Randy and I had really been praying our cars would last us at least another year because we can't afford new ones right now. His is well over 200,000 miles and mine is getting really close...I think it's around 179,000? They're 100% paid off, though! Both of us were blessed to have great parents that gifted us with paid off vehicles - THANKS, parents! So we'll drive them until they stop working. Hopefully that will be at least another year away!!! Thank the Lord! He is SO good.
Something is still wrong with it, but we think it will probably be an easy-ish fix and not even close to as expensive as a new car would be.
So since this post is getting really long, I'll just end it by saying that I had a follow up with my neuro-ophthalmologist and he said there is, in fact, too much pressure in my head putting pressure on my brain. Fun!
So I'm on this medication called Diamox (one of the most common medicines for my condition) that fortunately doesn't have many side effects other than it makes me go to the bathroom every 30 seconds (sorry for TMI!), my hands & feet tingle (and sometimes my lips - something I discovered Saturday), and soda has pretty much no taste whatsoever...which is a lot healthier for me anyway :) I'll take those side effects!
Now the big question is WHY is there too much pressure? Something must be causing it. So I'm having to do more tests to figure it out because there are only about 11 known reasons why one would have intracranial hypertension (IH), and all of them suck...
Next step: I have to get an MRV (magnetic resonance venography), which I did this morning, then an ANA (antinuclear antibodies)
Basically, one checks for blood clots in my neck/head that might be backing fluid up and the other looks for things that might show up for cancers, tumors, or autoimmune diseases.
Fun fact: they gave me the actual images, so I have big pictures of my brain! It's kind of interesting to be able to hold up a piece of plastic and see your brain.
Good News: I can see SO MUCH better out of my right eye since I began my medication :)
I go back on Thursday :)
Bad News: Randy gave me whatever plague he had, so I'm really sick with some kind of cold :( It came on so suddenly! I went from a slightly scratchy throat one night, to a pretty sore throat and stuffy nose the next day, to full blown icky the next morning! Now I'm so miserable it hurts to move.
Also, my sweet love is leaving me for China tomorrow :( I hate being without him, but I'm especially going to hate being here sick without him. Although I seem to remember this happening the last time he went to China...coincidence?
Thanks for reading!
I'll keep you posted on my followup after Thursday!
Love you all!
.JPG)
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