Who would have known that year would go back so fast it started off rocky to say the least and now look at where I am...
As January came it was sure that I wouldn't see Physical and Occupational Therapy for a while. My heart just wasn't taking it, so it seemed that was off the table till there was a solution. Although we all knew what that was we didn't want to think about it, surgery. Once the time came the doctors told my mom she'll be out in one hour that hour came and went, and I was still in surgery my cardio doctor was not taking no for an answer. My parents were updated on my status so they weren't to alarmed, but when he came out and said I was out and in recovery he explained to them that no matter their efforts my heart rate was never going to be normal at that alone was a problem. I was going to have to be a heart medication to help stabilize my heart rate, but it was almost never going to go lower then 80 beast per min. You might think that's normal and I'll tell you lets all lot at our anatomy books or just health class where it tells you at what rate should your heart take be between 60 to 80, and mine was what? 80 to 150! He wanted me to start with physical therapy but how was I suppose to do that if I could barely move with out feeling like my heart was going to come out of my ass! So there you have it my heart situation there no more tries after this last one next thing is a pacemaker, or maybe I can squeeze another cardiac ablation out of him.
Then come these sleep/coma/seizure episodes everyone thinks my SPS is great and dandy, but they really don't know what's going on. Every six to seven weeks I would fall in to this deep sleep, which I've explained in the past that no one really knows what they are. That's why I call them my sleep/coma/seizure because its all a guess right now. I've been put on a anti seizure medication that has seem to be working, because since I started the med I've only had one that lasted hours plus a week of remember who I am. Pretty scary stuff if your not use to it to may family they take it as a joke sometimes, because that's all we can do my brother for example will as for money when he know usually I'd be like Bitch you give me money and I'll just hand it over like nothing. Although he gives it back its just something they do, because they know that I don't know what I'm doing. I'm sure he told me a couple of times to poke my nose and eat my bogies, but hey what are brothers for sometimes.
IVIG treatments yeah they suck big ones... at first it was just IVIG then she add steroids and she added some medication I can never pronounce not to motion spell. I got sick like the porcelain thrown was my best friend in my case the trash can. Head aches that would last for days and just being sick was of being sick was the kicker. I asked I pledged with Dr. Sanka (neruo) to just change the treatment instead she added more. You might think yeah you where in hell with more, but no she add a saline before with a pain medication and Benadryl. It made a big difference although I still throw up every now and then she did place an order for Phenergan which takes the nausea away. I might have a treatment strategy with my doctor, but that doesn't mean that I'm on remission. In fact doctors know that their far away from getting me into a remission stage again.
In March my breathing had already sucked because of my asthma, but that never meant I need extra help breathing well that was the case. After sleep study it showed that my lungs were working over time to try to breath. Which explain my horrible asthma from the time I was 15! They sent me with a sleep specialist for the sleep/coma/seizure things but ended seeing him for something totally different. He is now my pulmonologist that specialized with people who have neurological lung disorders like ALS. Now I have to sport this awesome head gear at night to breath and a nose piece during the day to help my lung out. Like a C-pap that blows content oxygen I have a Bi-pap that blows in pressure and sucks out the oxygen kind of like a respirator with out the tube down my throat. So that's something new that really sucks.
Now that all of that is settled I've got Physical and Occupational therapy to get back to, well I already did in October and hopefully I'm doing well. I use AFOs (ankle foot orthotics) that straighten my legs since my ankles are inverted inwards causing the tendons to be stretched out to the point of ouch.
So as of right now for my SPS the medication I'm taking are:
IVIG
IV Steroids
a medication I can spell or say but I know it starts with a Rux something
IV Tramadol
IV Phenergan
IV Benadryl
Hydrocodone
Steroids 7mg daily
Baclofen 40mg 4x daily
Diazepam 8mg 4x daily
Tiazaden 4mg 4x daily
Keppra 500mg 2x daily
So yeah on the outside I might look all great and seem great, but know that on the inside I'm running on time and medication just to keep me going through a day. I'm not like other people that post every day on Facebook their pain although more then anyone I know its real, but sometimes its just non of their business how I'm feeling. For those who do want to know they can just ask, although tomorrow I will post that I'm start my treatment again for another month just to keep those in my family that don't really know what going on that its that time of the month again.
As January came it was sure that I wouldn't see Physical and Occupational Therapy for a while. My heart just wasn't taking it, so it seemed that was off the table till there was a solution. Although we all knew what that was we didn't want to think about it, surgery. Once the time came the doctors told my mom she'll be out in one hour that hour came and went, and I was still in surgery my cardio doctor was not taking no for an answer. My parents were updated on my status so they weren't to alarmed, but when he came out and said I was out and in recovery he explained to them that no matter their efforts my heart rate was never going to be normal at that alone was a problem. I was going to have to be a heart medication to help stabilize my heart rate, but it was almost never going to go lower then 80 beast per min. You might think that's normal and I'll tell you lets all lot at our anatomy books or just health class where it tells you at what rate should your heart take be between 60 to 80, and mine was what? 80 to 150! He wanted me to start with physical therapy but how was I suppose to do that if I could barely move with out feeling like my heart was going to come out of my ass! So there you have it my heart situation there no more tries after this last one next thing is a pacemaker, or maybe I can squeeze another cardiac ablation out of him.
Then come these sleep/coma/seizure episodes everyone thinks my SPS is great and dandy, but they really don't know what's going on. Every six to seven weeks I would fall in to this deep sleep, which I've explained in the past that no one really knows what they are. That's why I call them my sleep/coma/seizure because its all a guess right now. I've been put on a anti seizure medication that has seem to be working, because since I started the med I've only had one that lasted hours plus a week of remember who I am. Pretty scary stuff if your not use to it to may family they take it as a joke sometimes, because that's all we can do my brother for example will as for money when he know usually I'd be like Bitch you give me money and I'll just hand it over like nothing. Although he gives it back its just something they do, because they know that I don't know what I'm doing. I'm sure he told me a couple of times to poke my nose and eat my bogies, but hey what are brothers for sometimes.
IVIG treatments yeah they suck big ones... at first it was just IVIG then she add steroids and she added some medication I can never pronounce not to motion spell. I got sick like the porcelain thrown was my best friend in my case the trash can. Head aches that would last for days and just being sick was of being sick was the kicker. I asked I pledged with Dr. Sanka (neruo) to just change the treatment instead she added more. You might think yeah you where in hell with more, but no she add a saline before with a pain medication and Benadryl. It made a big difference although I still throw up every now and then she did place an order for Phenergan which takes the nausea away. I might have a treatment strategy with my doctor, but that doesn't mean that I'm on remission. In fact doctors know that their far away from getting me into a remission stage again.
In March my breathing had already sucked because of my asthma, but that never meant I need extra help breathing well that was the case. After sleep study it showed that my lungs were working over time to try to breath. Which explain my horrible asthma from the time I was 15! They sent me with a sleep specialist for the sleep/coma/seizure things but ended seeing him for something totally different. He is now my pulmonologist that specialized with people who have neurological lung disorders like ALS. Now I have to sport this awesome head gear at night to breath and a nose piece during the day to help my lung out. Like a C-pap that blows content oxygen I have a Bi-pap that blows in pressure and sucks out the oxygen kind of like a respirator with out the tube down my throat. So that's something new that really sucks.
Now that all of that is settled I've got Physical and Occupational therapy to get back to, well I already did in October and hopefully I'm doing well. I use AFOs (ankle foot orthotics) that straighten my legs since my ankles are inverted inwards causing the tendons to be stretched out to the point of ouch.
So as of right now for my SPS the medication I'm taking are:
IVIG
IV Steroids
a medication I can spell or say but I know it starts with a Rux something
IV Tramadol
IV Phenergan
IV Benadryl
Hydrocodone
Steroids 7mg daily
Baclofen 40mg 4x daily
Diazepam 8mg 4x daily
Tiazaden 4mg 4x daily
Keppra 500mg 2x daily
So yeah on the outside I might look all great and seem great, but know that on the inside I'm running on time and medication just to keep me going through a day. I'm not like other people that post every day on Facebook their pain although more then anyone I know its real, but sometimes its just non of their business how I'm feeling. For those who do want to know they can just ask, although tomorrow I will post that I'm start my treatment again for another month just to keep those in my family that don't really know what going on that its that time of the month again.
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