New month, new situation...gee are we having fun yet?

[benni]

I was just discharged from the hospital this afternoon. I've been in there since the 21st. I woke up Saturday, having difficulty speaking. (My new word is "speeching" btw, my speeching wasn't good.) I didn't realize it at first, because I wasn't talking with anyone. My kids were still asleep. It wasn't until I called my air conditioner repair guy to cancel my appointment that morning, because I just felt a little off, and could not tell them what I was calling for, at least and not make sense. I did finally let him know to cancel the appointment, but I'm sure he probably thought I was on some of drugs, or was just insane. lol

When my kids got up, I just told them that I was having trouble speeching, that my talking was not good. My daughter told me today, that my words were slurring at times, that I was repeating words, and that sometimes, what I was saying just wasn't making any sense. But I told the kids that day, that I was just tired and that I would take a nap and should be better when I got up. I took a nap and my speech had not improved any. I couldn't think of common words. I was getting frustrated because I knew I knew the words. I had been speaking them all my life, but suddenly could not recall those words, no matter how hard I tried.

My sister called me that night and after talking with me for about a minute she started yelling at me to get to the ER, that I was having a stroke. I told her I wasn't, that I was just tired and she kept telling me to get to the ER and just kept repeating it until I listened. I drove my kids to their father's house, dropped them off, and drove myself to the ER. I guess I still was not convinced I was having a stroke.

When you are having a stroke, time is important. They told me that in order to have a good success rate, with little to no permanent damage, you need to be treated within 4.5 hours. I was WELL BEYOND that time frame. However, my stroke was a minor one. It did not effect my limbs, and I did not get the droopy face. It was just my speech. Luckily, I've gotten a lot of my previous speech functioning back, but do still have some problems with my speech. I will forget common words and have to find a way to trigger it. For instance, speech therapy visited my room before I was discharged and showed me a picture and asked me to explain what was going on in the picture. One item was a "stool" but I could not think of the word "stool" and substituted "chair" in order to give context of the item at least. If I started to get excited or if I am tired, "speeching" becomes hard. But overall, I'm doing good.

I always knew I was at risk, because of the clotting disorder, but never really ever expected to have a stroke. And to wake up like that... I'm scared about going to sleep, in case it happens again. And I am now at an increased risk of having another stroke (possibly a bad one the next time). My poor sister was afraid she was losing someone else, so I'm so glad that I get to still be here and pick on her when she needs it. My daughter stated that she was scared because everything she was finding that day was stating "stroke" and "mom, you weren't listening to me". I owe that baby girl a lot for what I put her through that day in worrying.

Everyone hug the people you love tight and let them know you love them. I know I could have easily died Saturday, and I got very lucky. We aren't guaranteed tomorrow, but we do have right now.

 

[barnswallow]

I'm glad you are improving and out of the hospital. Blessings.

 

[maplenpg]

I was just discharged from the hospital this afternoon. I've been in there since the 21st. I woke up Saturday, having difficulty speaking. (My new word is "speeching" btw, my speeching wasn't good.) I didn't realize it at first, because I wasn't talking with anyone. My kids were still asleep. It wasn't until I called my air conditioner repair guy to cancel my appointment that morning, because I just felt a little off, and could not tell them what I was calling for, at least and not make sense. I did finally let him know to cancel the appointment, but I'm sure he probably thought I was on some of drugs, or was just insane. lol

When my kids got up, I just told them that I was having trouble speeching, that my talking was not good. My daughter told me today, that my words were slurring at times, that I was repeating words, and that sometimes, what I was saying just wasn't making any sense. But I told the kids that day, that I was just tired and that I would take a nap and should be better when I got up. I took a nap and my speech had not improved any. I couldn't think of common words. I was getting frustrated because I knew I knew the words. I had been speaking them all my life, but suddenly could not recall those words, no matter how hard I tried.

My sister called me that night and after talking with me for about a minute she started yelling at me to get to the ER, that I was having a stroke. I told her I wasn't, that I was just tired and she kept telling me to get to the ER and just kept repeating it until I listened. I drove my kids to their father's house, dropped them off, and drove myself to the ER. I guess I still was not convinced I was having a stroke.

When you are having a stroke, time is important. They told me that in order to have a good success rate, with little to no permanent damage, you need to be treated within 4.5 hours. I was WELL BEYOND that time frame. However, my stroke was a minor one. It did not effect my limbs, and I did not get the droopy face. It was just my speech. Luckily, I've gotten a lot of my previous speech functioning back, but do still have some problems with my speech. I will forget common words and have to find a way to trigger it. For instance, speech therapy visited my room before I was discharged and showed me a picture and asked me to explain what was going on in the picture. One item was a "stool" but I could not think of the word "stool" and substituted "chair" in order to give context of the item at least. If I started to get excited or if I am tired, "speeching" becomes hard. But overall, I'm doing good.

I always knew I was at risk, because of the clotting disorder, but never really ever expected to have a stroke. And to wake up like that... I'm scared about going to sleep, in case it happens again. And I am now at an increased risk of having another stroke (possibly a bad one the next time). My poor sister was afraid she was losing someone else, so I'm so glad that I get to still be here and pick on her when she needs it. My daughter stated that she was scared because everything she was finding that day was stating "stroke" and "mom, you weren't listening to me". I owe that baby girl a lot for what I put her through that day in worrying.

Everyone hug the people you love tight and let them know you love them. I know I could have easily died Saturday, and I got very lucky. We aren't guaranteed tomorrow, but we do have right now.

Crikey Benni, you've had it all thrown at you this year! Glad you are out of hospital and doing okay. Please know we're all thinking of you, and your wider family. Big hugs to you all.

 

[poppy]

I was just discharged from the hospital this afternoon. I've been in there since the 21st. I woke up Saturday, having difficulty speaking. (My new word is "speeching" btw, my speeching wasn't good.) I didn't realize it at first, because I wasn't talking with anyone. My kids were still asleep. It wasn't until I called my air conditioner repair guy to cancel my appointment that morning, because I just felt a little off, and could not tell them what I was calling for, at least and not make sense. I did finally let him know to cancel the appointment, but I'm sure he probably thought I was on some of drugs, or was just insane. lol

When my kids got up, I just told them that I was having trouble speeching, that my talking was not good. My daughter told me today, that my words were slurring at times, that I was repeating words, and that sometimes, what I was saying just wasn't making any sense. But I told the kids that day, that I was just tired and that I would take a nap and should be better when I got up. I took a nap and my speech had not improved any. I couldn't think of common words. I was getting frustrated because I knew I knew the words. I had been speaking them all my life, but suddenly could not recall those words, no matter how hard I tried.

My sister called me that night and after talking with me for about a minute she started yelling at me to get to the ER, that I was having a stroke. I told her I wasn't, that I was just tired and she kept telling me to get to the ER and just kept repeating it until I listened. I drove my kids to their father's house, dropped them off, and drove myself to the ER. I guess I still was not convinced I was having a stroke.

When you are having a stroke, time is important. They told me that in order to have a good success rate, with little to no permanent damage, you need to be treated within 4.5 hours. I was WELL BEYOND that time frame. However, my stroke was a minor one. It did not effect my limbs, and I did not get the droopy face. It was just my speech. Luckily, I've gotten a lot of my previous speech functioning back, but do still have some problems with my speech. I will forget common words and have to find a way to trigger it. For instance, speech therapy visited my room before I was discharged and showed me a picture and asked me to explain what was going on in the picture. One item was a "stool" but I could not think of the word "stool" and substituted "chair" in order to give context of the item at least. If I started to get excited or if I am tired, "speeching" becomes hard. But overall, I'm doing good.

I always knew I was at risk, because of the clotting disorder, but never really ever expected to have a stroke. And to wake up like that... I'm scared about going to sleep, in case it happens again. And I am now at an increased risk of having another stroke (possibly a bad one the next time). My poor sister was afraid she was losing someone else, so I'm so glad that I get to still be here and pick on her when she needs it. My daughter stated that she was scared because everything she was finding that day was stating "stroke" and "mom, you weren't listening to me". I owe that baby girl a lot for what I put her through that day in worrying.

Everyone hug the people you love tight and let them know you love them. I know I could have easily died Saturday, and I got very lucky. We aren't guaranteed tomorrow, but we do have right now.

Oh my gosh, what a week. Waking up with something like that must have been so disorienting. Had to laugh at the air conditioner story, it's funny how you knew something was wrong, and knew what you wanted to say too. Speeching is a good word, you should keep it.

Seriously, when I saw this post I was so relieved I almost cried. Glad you're ok benni, and please stick around and continue speeching with us as long as humanly possible!

 

[benni]

Oh my gosh, what a week. Waking up with something like that must have been so disorienting. Had to laugh at the air conditioner story, it's funny how you knew something was wrong, and knew what you wanted to say too. Speeching is a good word, you should keep it.

Seriously, when I saw this post I was so relieved I almost cried. Glad you're ok benni, and please stick around and continue speeching with us as long as humanly possible!

Oh, speeching is my word now. My kids are already tired of my speeching, but I am owning it. I was really disorienting and frustrating, because I just did not know what was going on. I am having episodes of anomia (btw, there is a game by that name that I am getting because it looks like it would be fun and maybe will help the kids to understand what it feels like (). My intellect was still there, my memory was intact, but for the life of me, I could not get the words out right. I got EXTREMELY lucky.

 

[poppy]

Oh, speeching is my word now. My kids are already tired of my speeching, but I am owning it. I was really disorienting and frustrating, because I just did not know what was going on. I am having episodes of anomia (btw, there is a game by that name that I am getting because it looks like it would be fun and maybe will help the kids to understand what it feels like (). My intellect was still there, my
memory was intact, but for the life of me, I could not get the words out right. I got EXTREMELY lucky.

You made me look up anomia. Hmm, hopefully it will come back. Maybe the game would help!

But then as you get older it will go away again. When I was with Mike & Joe the week of his Mom's memorial, our running joke was that between the 3 of us we had a complete thought.

 

[benni]

You made me look up anomia. Hmm, hopefully it will come back. Maybe the game would help!

But then as you get older it will go away again. When I was with Mike & Joe the week of his Mom's memorial, our running joke was that between the 3 of us we had a complete thought.

I like that! But I know that was a very difficult time for you.
I didn't even think to explain what anomia is: a form of aphasia in which the patient is unable to recall the names of everyday objects

For me, it's not constant (which is great!) but I am having my moments. Like not being able to think of the word "stool" yesterday. I knew it, I recognized what it was, but for the life of me could not figure out the name of it, so I called it a chair instead. The doctors have said it may always be like this, since I didn't get in to the ER until many hours later (because I was not convinced I was having a stroke), that I may have some damage to my brain in that area that will be permanent. I think Prince had the right idea when he went with the love symbol as a name. lol

 

[mdiver]

 

[benni]

My latest (2 parts):

On 9/21, I woke up with what I thought was sciatica pain (lower back and shooting down into my leg) on my left side. The pain got worse during the day and towards evening began radiating around my left side, into my abdomen and groin. I tried to deal with it the best that I could that night, because I really didn't want to go to the ER over a back ache. On the 22nd, I called my doctor to schedule an appointment for that day, but he couldn't fit me in until the next day and recommended that if I was hurting that bad to go to minor care. So off to minor care I went.

Minor care diagnosed me with a kidney stone. The x-ray didn't show one, but she said that many are too small to be seen by x-ray, and my movements and the way I was describing it, fit kidney stone to a T. Then she recommended that I get my INR (for my blood thinners) checked at my doctors and that I wouldn't need to see the doctor to do that. Minor care couldn't prescribe me anything for the pain and she kept apologizing to me about that, but they are a narcotics free facility, but she did prescribe me Tamsulosin (Flomax) to open my ureters and help the stone pass more easily and something for nausea. I told her that there was no problem about the pain pills, I would deal with it the best I could since I'd already been dealing with it. I headed up to my doctor's office to get my INR checked (he is upstairs from minor care). I was able to get it checked and since it was above what my doctor's machine could measure, she had me wait for him. He scheduled an appointment immediately with me. Since my INR was so high, there was a risk of bleed with the kidney stone (could be bad with an INR that high) so he sent me to get a CT scan, also told me, "you look like every patient I have ever had with a kidney stone". He was upset that minor care didn't prescribe pain medication and prescribed me with a codeine pill. CT scan later that afternoon showed a small non-obstructive kidney stone on the left side, no major bleeds.

That evening, after I had my daughter fed her dinner (I could only eat 2 bites and then felt like I was going to throw up), I decided to take a 1/2 a tablet of codeine (since I had an empty stomach and was already nauseous) and I took the Flomax. I laid down for a nap and slept for an hour or two. Got up, checked on Cara and told her bedtime, as she had school the next day. I got up from the couch, walked about 7 steps, and suddenly felt very dizzy and off-balance. I ran into the door frame, which alerted my daughter to pay attention to me. I walked into the hallway, moving towards the restroom and the dizziness got worse, so that I sat down right there in the hallway. Overheated. I got up again, took a couple of steps and I blacked out completely, lost total consciousness.

My daughter stated she saw me fall back, hit my back and side against a radiator heater, before falling straight down the rest of the way. She said at that point I began convulsing, my arms and legs were jerking and I was making a moaning sound that she had never heard me make before. She said she started screaming at me, yelling for me, and was "more scared than I had ever been in my life, I thought I was losing my mom, that I was watching my mom leave and I panicked for a moment".

On my part, I wasn't aware of anything until I started becoming aware of hearing Cara from a distance, hearing the panic and fear in her voice. I had to get to my daughter. I needed to help her. I didn't like hearing that kind of fear and panic in her voice. It scared me worse than anything else ever had. Finally, I reached her (I came to). She was crying, yelling my name, yelling "mommy!", and said, "I'm calling dad!" I"m aware enough to say, "No, I'm okay, overheated, passed out, give me a couple of minutes." I sat there, still dizzy, still unable to get up. Finally, I had her help me to get outside, where it was cooler. (My AC still isn't fixed. Hadn't called to reschedule them to come repair it after my stroke. Think I was too embarrassed to call after I had tried to reschedule it during the stroke and couldn't get the words out right.)

While I was outside, her dad and my son arrived. He had just picked Dakota up from work. Cara, in the meantime, had also called 911 and told them I had passed out, had a convulsion, and was still very weak and still not responding well. An ambulance showed up not long after my son and ex-husband showed up and they took me to the ER. My blood pressure was "very low".

At the ER, my blood pressure was 53/35 and 47/35, so they took me straight back. At one point, while they were taking my blood pressure, it was like I was looking at myself from behind and could see myself slumped over in the seat they had put me in, my arms dangling at my sides, and I was very pale and non-responsive. Eventually, my BP came up and I was doing better, except for the pain from the kidney stone. I texted the kids to let them know I was okay, to thank my daughter for taking good care of me, and to thank David for coming over to make sure I was okay, and to get our daughter. ER admitted me. My INR, at that time, was 9.6.

 

[benni]

Hospital stay:

While in the ER they had done a bunch of other labs and stated that I had a heart attack (my Troponin levels were elevated) And after they admitted me, I had to stay in the ER, because there were no beds available in the hospital. The next day, they moved me to the ER overflow unit, until they could get me a bed upstairs. By the next day, they were able to move me upstairs.

Once I was upstairs, they took my INR again, and it was 12.0. My INR had never been that high before. My blood pressure had stayed up, had not dropped any more, and I was doing better (I thought) except for the pain from the stone. Doc said that Flomax (Tamsulosin) has a known side effect, the first time you use it, of bottoming out your blood pressure and a lot of people pass out because of it. They said they usually give the instructions to take it at night, at bedtime, because your chances of getting up are slim and it will minimize that effect if you remain laying down. No one had given me that warning.

My kidneys were functioning alright at that point. Later, my creatinine levels became elevated which is indicative of kidney damage / kidney failure. My Troponin levels continued to go back to normal range. Doc said he doesn't think I had a heart attack, but rather it was due to the sudden drop in my blood pressure, that my brain sent out a signal, "I'm in danger, need oxygen" and my heart responded by sending out signals and my Troponin levels responded to the threat and became elevated. Honestly, I think I was dying, lying here at home with my daughter panicking and that my daughter's panic and fear and hurt brought me back.

I went through the gamut of they thought I was having kidney failure and for whatever reason they pumped me FULL of liquids. I gained 12 lbs in 2 days from all of the fluids they gave me. My left lung filled with fluid and one of the CT scans they did showed interstitial pulmonary edema (excess fluid in the lungs, caused by the fluids they gave me). At another time, they thought I was having Congestive Heart Failure. Another night, I started coughing up blood, and with my INR being 12.0, they decided to give me a vitamin K injection. The vitamin K overshot the mark, and my INR was back to pre-Coumadin levels and I was back to at risk for another stroke. I just went on day after day like this. We'd get one issue cleared up and another issue showed up.

They wanted to do a CT scan with Contrast but because my kidney functioning wasn't doing well, they couldn't, until the day I was finally discharged home. My creatinine levels suddenly went back to normal. My kidneys are still enlarged, and they aren't sure why. It seems they aren't working as well as they should be. The CT scan with Contrast showed what they are saying is a UTI, but the docs disagree with that finding, because urine cultures and blood work came back negative for any bacteria or infection.

I will have to follow up with a kidney specialist and urologist, and they plan to do many more tests to find out what is going on with my kidneys and bladder. There was a LOT of blood in my urine, but they don't know where it was coming from since I wasn't showing any infection. The kidney stone is still there and has not moved at all. The pain has subsided there, but my ribs are still very sore from where I fell. My coccyx hurts from being in the hospital beds and it's painful to sit for very long. My lower lungs had collapsed, according to the CT scan with contrast, and they said that was due to my being in the hospital for several days.

We still don't know what is going on and my left lung still has fluid, but they didn't give me any Lasix to help get rid of the fluids because of the contrast. I follow up with my regular doctor tomorrow and he will prescribe the fluid pills. My lower lungs are still collapsed, but they are hoping that will clear up on its own as I'm able to sit up more and straighter, outside of the hospital bed, and breathe correctly. It's been a ride and I'm not sure where this ride took me. I honestly think I was dying twice (once here at home when I passed out) and the second time in the ER when I could see myself from behind, slumped over). I haven't talked about those two episodes with anyone, except to say that my daughter saved me. I didn't want to scare my family. But I'm here, and God willing, I will get to celebrate my birthday on the 28th of next month. I am on about 12 new medications between the last hospital stay from the stroke last month, and this hospital stay, and am trying to work on that schedule. Even though I got out yesterday, I did work some today, but will only answer and return calls tomorrow and the 30th. But I'll see my doc tomorrow (later today the 29th) and will hopefully get a few more answers.

So, the saga continues. Please please please don't let anything happen in October. I've had enough.

 

[barnswallow]

Benni! I want you well and stable and steady. The body is so complicated! That everything works, when it works, is surely miraculous. It's a little universe or even just a planet (thinking of our own and its own troubles). Your story sounds like the story of the butterfly flapping its wings in Brazil causing ripple effects on the other side of the world. So many moving pieces. My brother is a doctor. Reading your story makes me want to ask him his thoughts but I know that's not really possible. I want someone to have the answer that will bring your body to a steady state. You never know when the medical person will show up who can say, "Oh, I've seen something like this before and this is what worked..." Still, even then, every body is different. Doctoring is an odd combo of science and art. In a way, all science is. My wish for your October is that it is a healing time, a time for your body to adjust and find balance and gain strength. Thank you for telling your story. Mentally, you are strong! Your ability to relate what is happening shows that. I'm so glad your daughter was there and called you back. So much to live for as you watch her grow into an adult. Respect for her fierce love.

 

[benni]

Thank you barnswallow! This is just one more thing to overcome. lol When I was young and started getting the blood clots (age 17), I thought it was a death sentence since my mom was only 29 when she died from them and her mom was 25 when she died from them. To me, blood clots meant death. But 38 years later and I'm still here, still kicking, and continuing on. I've got so much damage in my body from surgeries and blood clots, it truly is miraculous that I'm still here to give you all trouble. lol But life goes on, that's what it does, and I'm thankful for the life I've been given.

And my daughter is incredible (all of my kids are). She has stayed with me since I got discharged from the hospital and refuses to let me leave the room unless she knows where I am going, why I am going, and whether it is something she can do for me instead. She calls me stubborn, always trying to do for myself. (I always have had to, so that's what/who I depend on the most.) Tonight will be the first night I'm home alone and she's not too happy about it, but she needs to spend time with dad too.

Thank you so much for all of your wonderful comments to me. I truly appreciate them. Life is a truly miraculous journey and we are blessed when we get to share time, even just online, with incredible people.

 

[maplenpg]

Thank you barnswallow! This is just one more thing to overcome. lol When I was young and started getting the blood clots (age 17), I thought it was a death sentence since my mom was only 29 when she died from them and her mom was 25 when she died from them. To me, blood clots meant death. But 38 years later and I'm still here, still kicking, and continuing on. I've got so much damage in my body from surgeries and blood clots, it truly is miraculous that I'm still here to give you all trouble. lol But life goes on, that's what it does, and I'm thankful for the life I've been given.

And my daughter is incredible (all of my kids are). She has stayed with me since I got discharged from the hospital and refuses to let me leave the room unless she knows where I am going, why I am going, and whether it is something she can do for me instead. She calls me stubborn, always trying to do for myself. (I always have had to, so that's what/who I depend on the most.) Tonight will be the first night I'm home alone and she's not too happy about it, but she needs to spend time with dad too.

Thank you so much for all of your wonderful comments to me. I truly appreciate them. Life is a truly miraculous journey and we are blessed when we get to share time, even just online, with incredible people.

Crikey Benni, I'm so sorry to hear all you've been going through. As Barnswallow said, let's hope October is a month where you get rest, recovery and strength. Much love to you. x