Shocking Foot Spasms

Still awake. Had to cut out early, after lunch, at work, because my stomach hadn’t been feeling well all day and was slightly queasy and really bloated feeling. After I ate, I thought the queasy part may have been just that I NEEDED to eat something, which I DID need to. But, I felt worse. Plus, just with all the 1.5-week of training all day, everyday, and SOOOOO much to learn, remember, and try to wrap my mind around… Then going straight in to “Grad Bay” this week and doing nothing but taking live calls based on what we learned, I am just physically and mentally, exhausted and stressed. So I needed to do what was/is best for me and take a little “rest time off.” I’m so fortunate to work for such a wonderful company that accommodates my medical needs, and have always had understanding managers (I’ve had 3 different managers now.) So as soon as I got off work around 7pm, I laid down and took a 2-hour nap. I slept so hard and it felt great. I woke up STILL not feeling the best in my tummy, but I took a Zofran (nausea medicine) and STILL felt super bloated but the nausea was some better. Then, a bit later, took some Gas-X and after THAT I FINALLY felt much better.

Tomorrow I go see the podiatrist and I looked her up and she has really good reviews. She also specializes in foot/ankle surgery. So that is good, because I am pretty confident that these spasms are not treatable by any kind of medication and I don’t want to go through a surgery and know it’s going to be a big mess if it would (likely) require general anesthesia, but I’m so desperate to fix this that I am willing to do ANYTHING. As long as it is a FOR SURE solution. I am not doing a surgery if it is just an “ohhhhhh this may or may not work,” or has a 50% success rate or something. That’s just rolling the dice, and I’m not going through all the pain during/after surgery, babying my fresh surgery foot for who knows how long, or risking my life to be put under anesthesia unless I am given a pretty firm high expectation for success. But the pain from this when it happens is SO BAD that even if it just happened once a month, that is too much to live with! THATS how painful and bad these “spasms” are. Which are likely not spasms at all, because spasms are muscle related. This is for sure nerve pain. It shoots, it pulses, it feels like my foot is attached to a truck battery and it’s being electrocuted over and over again, closer together until they are back to back, and higher voltage with each shock. They are so bad I begin vomiting and shitting on myself all at the same time! I have to basically be knocked out to even get through them. Normally TWO phenergan suppositories (this is all IF I can keep them in my rectum, or if my rectum isn’t packed full of shit. Because I’m always constipated, and then when this happens it all begins to come out. So sometimes my mom has to help me get my rectum clean just so she can attempt to put one in. Or if she’s even able to get one in, if I can keep it in, due to the uncontrollable shitting.) the phenergan acts as a sedative/sleeping agent, as well as helps with the nausea. Phenergan is STRONG. I’ve had it on/off my whole life, and normally just one 12mg dose knocks me out for HOURS, and I have the tolerance for high doses of pain meds, enough to sedate an elephant! So if we can make it happen it normally takes TWO 12mg phenergan and TWO 10/325mg Percocet! Can’t take the Percocet until I am not nauseated though! Keep in mind, all this is happening simultaneously! My poor mom sometimes just begins bawling, especially as it normally happens while she’s home alone and dad isn’t here to help her! She’s trying to get the suppositories in me while trying to get control of my shitting, and also keep my linens clean and me, and while I am shitting actively she can’t begin to try to use one. Yet I’m screaming and crying in pain. She then at the same time had to try to get my rectum clear so she can use one.
These “spasms” happen for HOURS ON END. I’m talking like 12hrs+ !!

With all that medicine pumped in to me, it may just allow me to doze off to sleep for MAYBE an hour or two, and I normally wake with them still there.

When in the hospital I had them and the only medicine that ACTUALLY worked and kept them totally away, was a Fentanyl drip that I could administer more every 10mins.

Obviously you can’t do that high of a level of pain meds, especially IV, at home. So I have to just sweat them out, because I can’t go to the ER every time I have them! This last time was so bad I almost did go through!

So a nightmare is an understatement!

This is why this “Tarsal Tunnel” or whatever it is, HAS to stop. Sorry to get so graphic, but just speaking the truth. To try and paint the picture of how severe these are. And even so, my description isn’t even near to the severity of when they occur.

So I pray this doctor gives me some hope tomorrow. The only thing I really don’t like is that this podiatrist is out of Scott & White hospital. I HATE S&W! My primary doc happens to work for them so he was the one that referred me. So that’s how I ended up there. If I didn’t love my doc so much, I’d have told him he could kiss my ass and see you later LONG AGO, all because S&W is SO BAD to work with. We’ll see how this goes.

Needles, Needles, and More Needles!

What a crazy last 24 hours. I got all new sand put in my clinitron bed and a new lining that I have been trying to get for 2 months now. That was the good part because it was SOOOO comfortable, and it had had two small leaks in some of the seams.

At 5am the horrid foot spasms began again. I had just had them less than a week ago! Mom worked with me for a couple of hours on and off throughout the night trying to get them to stop, or at least medicate me enough to sleep.

Started with one pain pill. Still screaming and crying in pain. She came back and had to manually clean out my rectum (I was hurting so bad I began to defecate on myself) and if I have stool in my rectum, plus am straining in pain with every spasm, I won’t be able to keep a phenergan suppository in.

So she did, all while I was screaming and crying.

Then a bit later, I’m still screaming. I had soiled myself more, and she had to clean me out AGAIN. She thought I had lost most of the first phenergan with soiling. So she gave me a second one AND a second pain pill. Finally they began to ease after about 30 minutes. All the meds finally knocked me out and allowed me to sleep some. But I had an appointment I had to get up early for to get my cervical injections in my neck for my migraines, and since I had the foot spasms the week before, I was going to ask for injections in my right foot as well. So this appointment I had to make it to come hell or high water, since it was for these exact issues.

So I only got a couple hours of sleep when mom woke me up, and my spasms had just started creeping back up on me about 30 minutes before she woke me up.

I was SOOOOO exhausted AND still very groggy and dopey feeling from all the phenergan mostly. My pain pills don’t really make me dopey, even if I take two.

So I got up in my chair, and normally, slowly with the aid of just my pain pills for some reason the spasms get BETTER after I get up in my chair… the longer I am in it. I took another pain pill (which I was due for) once I got up, with the hopes the spasms wouldn’t bother me all the way to my pain management doctor.

We came dragging our asses in a little late. I was supposed to arrive a bit early to take a half pill of Xanax before the procedure. Because last time, the whole needles in to my cervical spine of my neck made me a bit anxious. But I knew with all the meds I had had to take throughout the night and morning, that taking Xanax would NOT be a good idea. When we got there, they said they had it waiting for me, but I declined it and explained I had had a very rough night with foot spasms and didn’t need to take anything else. By this time, I was still SLIGHTLY groggy.

We went right in to see Dr. Harris in the procedure room, and explained what had been going on. I always have to describe to him like its a new thing, even though he has given me foot injections before, and talked to him about it before. Also had to kind of refresh his memory on why I was getting the neck injections. He just sees SO many patients that I think he forgets all the small details for each one. I can understand, I do that with my customers at work. I talk to SO many, that sometimes when I work with them again, I forget all the details regarding the previous call. Sometimes I can remember if they kind of remind me.

So he (like he has said before) thinks it could be Plantar Facetious. OR… this time he said it could be Tarsal Tunnel, which is similar to Carpal Tunnel of your hands/wrist. I read about it, and honestly, all the symptoms and the way it presents sounds exactly like what it is. It feels like an electrical shock shooting from my heel to my middle toes. It has gotten progressively worse over the years, and when it presents now, it is unbearable and untouchable by even some pretty strong meds. The shooting “spasms” as I call it, only happens in the middle of the night after I have gotten out of my chair and in bed. With each spasm, they start getting closer together in time, lasting longer each time, and stronger each time.

He felt around and found some pretty significant trigger points. Ironically, my foot sensation is dead as a doornail unless one of those spots gets mashed, or when I have the spasms. Otherwise, I can’t feel anything hardly on the foot. So much so, that the doc always forewarns me about how painful the foot injections are and a lot of people cannot even tolerate them. I always kind of laugh, because every time they have injected my foot, I felt NOTHING!

He injected me about 10 times in my foot and covered a much larger area than he had before.

Then I moved on to the neck injections. Now these HURT. Even his assistant, Ron, said “Man he really hit you hard this time!” But thats good. I haven’t had a full fledged migraine since my previous injections 4 months ago. He covered all the areas he mashed that made me cringe. Last time, I had complained a lot about my left shoulder blade, but he didn’t focus on it as much and was injecting a bit higher up. This time he found some spots that he could feel the muscles and tendons were/are really tight, and also made me cringe, and he basically worked his way all the way up the inner portion of my left shoulder blade (toward spine) and one spot he injected made me yell out in pain. It hurt BAD. These injections have anesthetic in them, but that only helps in the general areas he’s working in, so as he moves away, it’s like starting all over again. He went toward the top of my shoulder blade some as well, and then in my actual neck area. This time he asked me and palpated further up in to my hairline. That bony prominence area behind your ear, where normally a hard headband may cause headaches. If I am making this clear. But its more in your skull than neck, and my Migraines radiate from my should blades, up my neck, and in to my head on that left side.

He says “Ok you are going to hear a crunching sound with this one.”
I said, “A crunching sound?”
His assistant said “yes, its behind your ear and it does make a crunching sound.”

Sure enough… he stuck that needle in, in several sticks all around that area and with each one it was a very disturbing “crunching” that sounded like bone crunching. I classified it more disturbing than hearing a tooth get broken when a dentist is pulling it out.

He stuck me at LEAST about 12x that I was aware of in the shoulder, neck, head area.

I am a lot more sore with this round of the cervical injections than I was the first. But I am ok.

So yeah, what a night/day! LOTS of pain… but I hope these will keep me from some, at least for a while, and I am glad I was able to get well enough to make it to the appointment. I was a hot mess and there would have been no way in hell I could have made it if the spasms hadn’t lessened up some toward the time we had to go.

Update to Pending Kidney Surgery

Like I have said in my previous post, I am working on filling in all the missing gaps in my blog that I had been using FB way too much to talk about all of my more detailed situations going on day by day. I had basically been using FB as a blog to update all my friends instead of my actual blog! It’s going to take me a while to go through and get all the detailed posts added in to my blog on the date they occurred. In the meantime, I am having to continue on with creating new posts on my blog or else I will get further and further behind. I had to go back all the way to March of 2014 to begin this process… and have only made it to May 2014 by the creation of THIS blog entry. So in other words, I am just going to talk about in this post about what happened the THIS day, and not what led up to it. So if you feel there are unanswered questions or lack of details leading up to this. Don’t worry, as in time, I will finally be caught up. Now… onto the blog entry…

So this pending kidney surgery has been dragging on and on all this time. It has been about 1.5 months since I had my first kidney stone attack and got the diagnosis of a 6mm kidney stone lodged in the top of my right ureter. After finding out from Dr. Shapiro’s office (my pulmonologist) that I needed to call Dr. Maloney (the first urologist I saw after going to the local ER) in order to get a referral to see a urologist that works out of Seton Main (which is the only hospital Dr. Shapiro wanted the surgery to be done because he needed to be there for my respiratory support) I called Dr. Maloney’s nurse, and she said he wanted me to do another KUB (kidney, ureter, bladder) X-ray done.

I went and he couldn’t find the stone on the x-ray. Then he had me do a CAT scan real quick as well. Well come to find out, he couldn’t see it on that x-ray either! Now, this does not mean it’s not there. Because whomever read my x-ray in the ER that night that I went in to dire pain from it, said they saw a 6mm stone right at the opening of my right ureter. All Dr. Maloney got that night he was called from the ER was the report that was done, and he didn’t actually SEE the CAT scan the ER did. So he said that he wanted to get a hold of that scan and view the scan he did with the ER scan, side-by-side. He said in the last 30 years of him being in practice, that I had the most difficult to read CAT scan he’s ever seen! Wow! LOL! Doesn’t surprise me with my anatomy being all totally screwed up and nothing is where it should be!

He began talking about trying to get this thing out, and he knew from the doctor’s notes (that was from the same group, years ago) that he knew he wouldn’t be able to get a scope up there by going through my urethra because my ureter curves around one of my other organs, and follows the turn of my scoliosis. He said by my CAT scan that he could tell me that my kidney looked great. He said if it were blocked, it the kidney would have been really inflamed and swollen, and it’s not. He said he DID see a few spots of calcification areas, but they were all outside of my ureter. He said EVERYONE has calcification spots, and they are nothing to be worried about and a ton of different things cause them. He said mine were likely from my ureter rubbing against other organs or my spine, etc. But he could find NOTHING in the actual ureter.

So all that being said, since my kidney looked so good on CAT scan and didn’t show any signs of damage to it, then he said that really the risk involved with putting me under anesthesia were WAY higher than the “absolute imperceptible” chance of damage to my kidney or risk of kidney dying.

So he said that he didn’t think surgery needed to be done about this anytime in the near future. He said he can’t explain my pain that day, and don’t doubt it was from a stone… but he said he simply just couldn’t find it, and didn’t know where it could have gone. He said that everyone can read CAT scans differently than others, but that’s not to say that either the ER radiologist’s findings were wrong or right, or that what he can’t see is wrong or right. So this is why over the next week he wants to get a hold of my scans from the ER to compare them to the scan done in his office, and also get some other well-trained eyes to look at the scans with him.

He is supposed to call me when this happens, and he told me to call next week (mid-week) if I haven’t heard from him, and bug him until he gets it done. LOL! He said otherwise, all I need to do is schedule a followup appointment in a month with him, and do another CAT scan just to stay on top of this. He also said that if I spike a fever … I need to call his office first. He said if he isn’t on call, to have the doctor I talk to call him at home, because he said I wouldn’t be able to really explain in detail to him my situation the way he could for him to truly understand from a doctor’s viewpoint on how difficult of a patient I am/will be. He said then he will call up one of his 8 out of 16 partners that work out of Seton Main to see me there, since that’s where I will have to go. I asked him about what if I run in to severe pain from it again, and he said “pain, while it may feel like you are dying… you aren’t dying and pain is just pain… it’s not killing you.” So basically just deal with it at home if I can, and if not, then need to call them. He said if I spike a fever, they may have to go in immediately and do something surgically. But again, he felt the chance of that was minimal to nonexistent.

So it’s GOOD NEWS!!! For ONCE! I don’t have to now face surgery on this thing and risk my life doing so!! AMEN!

Overnight Pulse Oximetry Test – Not So Good

So been through a nightmare recently with my blog first going down for 4 days, and then my host not being able to fix it, and had communication issues with my host not answering me in a timely manner. So long story short, I ended up just moving my blog to a different host. Nothing personal, just had to do what I had to do to get it back up and running.

So I have been needing to post this update on me, because I am doing all of my in-depth, personal, life discussions via my blog ONLY and am trying to keep from turning to Facebook to talk about these kinds of things, and keeping it more simple posts like what I ate for dinner, what movie I am watching, etc. LOL!

I am also still working on filling in all the gaps on my blog. I am going through Facebook, and I started in March of 2014 and copy/pasting all of the detailed life events I posted there, until I get caught up to current times. My most current blog post here (the one prior to this one) discusses that I had pneumonia for a 3rd time this year, and that I have to get a kidney stone removed. There will be more to come about all of that that led up to that post once I slowly fill in the large gaps where I turned to Facebook to talk about my daily personal life things. I have made it through to the beginning of May when my blog went down.

So, let me continue on with the CURRENT happenings.

I had to get pulmonary clearance to do this kidney stone thing. So Dr. Shapiro wanted me to get blood gasses done and an overnight pulse oximetry test done.

I did the blood gases first, and then the following day, ended up with pneumonia for the 3rd time this year. So that put things on hold for a bit with the overnight pulse oximetry test, because I needed to get better from the pneumonia before doing it. I finally got that done a couple of weeks ago.

So I’m so scared. I have passed all of my previous sleep studies before with flying colors of Sats in the upper 90s and on room air. Now, I have pretty much failed! I suppose its because I am so sedated with pain meds now daily, Butrans pain patch (highest dose 20mcg,) and Percocet (10/325) every 4hrs. when awake. Then I take Ambien (10mg) to sleep. I take all these for high levels of pain in my hip from the bone infection that destroyed my hip bone.

My docs PA called me and said I had low “spikes.” They said they want people to be at 90% or higher, but not below. (Of course healthy people should be between 98-100%, because that shows how much oxygen your blood is getting somehow, by your pulse.) I figured I’d be in the upper 80s at the worst, just from me seeing what I was after I’d wake from being asleep at the hospital and looked at the meter to see where I was. The lowest I ever saw myself at was 86%. So asked her, “well how low are we talking?” and she stated 71% was my lowest, which is critical levels, and it would spike, and then only be there for a very short time and then shoot back up. She said I was “below 90% for 35% of the night.” But for all I know, that could have been only once or twice I dipped (I didn’t ask how many spikes and/or if all were THAT low.) Maybe I am being super stubborn, but to me, being 90+ for 65% of the night isn’t THAT bad, as long as I was running upper 80s and not below 86-87% range. Especially with having such compromised lungs already, to be the age I am, and all the sedative-like drugs I take, I personally feel that if I was above 90%, 65% of the night, that’s pretty good actually! Also, like I said… for all I know, that 71% could have been just ONCE… and I think as long as I was over 85% for MOST of the night, that would be really not bad.

Another part of this is I used to sleep SOOOOO restless and would wake sometimes once an hour per night to roll over. But then I got my Clinitron sand air fluidized wound bed, and I can sleep literally in ONE position ALL night for 10+ hours before just feeling the need to roll over. I am only rolling to change positions, not because I am sore or hurting anywhere though! I sleep DEEP every night now! My mom has even vacuumed my floor while sleeping once and I didn’t wake at all.
So with all of it combined… MAN do I sleep GOOD NOW!

But I almost took a strange pride in a way over being the only person with SMA that I know that didn’t require any kind of sleeping support. But apparently not now.
So my docs PA told me that my doctor wanted me to go on BiPap. They said until I get the machine, I needed to sleep on 2 Liters of Oxygen. Which is fine. But I am scared to death over BiPap!

I am finally at a point in my life where I sleep comfortably and deep every night. Now I am told I have to adjust to some machine on my face?! I tried one YEARS ago and the moment they turned it on I felt like my lungs were going to explode out of my chest, and that I was suffocating. I made them take it off and I swore I’d never try one again.

I AM willing to try… but I am concerned of course with having the same feeling. I do not think a mask that covers my nose and mouth will work. I have to be able to holler for my mom at night, and don’t think I can tolerate that because I learned I am a bit claustrophobic. I can’t even do breath stacking with a cough assist mask. I have to take one breath in/out and then a lot of times will panic during the in/out and will freak and start trying to pull it off my face either during… or immediately following if it isn’t pulled off me the SECOND its over. I am hoping I can just use a mask that covers just my nose. I think I could do that a lot easier.

But then, my other concerns are skin breakdown or sore spots. I have VERY sensitive skin. I have battled horrid ear sores all the way down to cartilage from sleeping on my sides with a memory foam pillow. I now got my dad to cut holes in a much cheaper memory foam pillow I bought so I can avoid pressure. I have gotten sores from wearing oxygen tubing on nose, and on top of my ears where the tubing hooks over top of ears. I can’t wear any kind of metal or plastic headbands because they hurt my head. Putting my hair in a ponytail makes my head sore and gives me headaches.

So I am concerned with where the mask sits, and also I am almost MORE concerned with the straps that go around your head! I am worried about getting sore, provoking migraines, or getting ACTUAL pressure sores on any of the places mentioned.

So now I am just awaiting a phone call from Healthline, the place that will provide the BiPap, to call me to set up a time to come out and get it set up with me. I am not sure if I can handle it. I know a lot of people that swear by it, both able-bodied, and people with neuromuscular diseases, but I don’t like the idea or feeling of not having control of my own breathing! I have ALWAYS been a very shallow breather, and this is going to force me NOT to be!

Until then, I am just sleeping on 2 liters of oxygen. Sigh…

 

Ice Bucket Challenge, Tweaked

During the month of August, the Internet BLEW UP with video after video of people doing the ALS Ice Bucket Challenge. I don’t think there is any need for me to elaborate or explain this much further because if you didn’t either DO, participate in some way, or at the very LEAST VIEW an Ice Bucket Challenge video, then you must live on another planet! Seriously!

I took it upon myself to get in on the “action” in some way. Since SMA (spinal muscular atrophy) is in the same family of neuromuscular diseases that fall under the umbrella name of “Muscular Dystrophy,” then I decided I wanted to see if I could get some people to do an Ice Bucket Challenge for me and not only to try to bring awareness to ALS, but also SMA (or if a general donation to MDA was made, that would work for me as well.

Just a little tidbit on the reasoning for this, and also about these two diseases.

ALS (amyotrophic lateral sclerosis) and commonly known as: “Lou Gherig’s Disease” after the famous baseball player, Lou Gherig, that developed ALS during the height of his baseball career and was forced to quit, is a neuromuscular disease that most commonly don’t show any symptoms until age 50 or older. However, it has and does hit people as young as in their 20s and 30s. It is genetic. Once symptoms begin, which may be something as simple as a shaking hand, fatigue, etc. the onset is normally very rapid. Most people do not survive longer than 3-5 years after onset. It weakens ALL of the voluntary muscles. This includes not only the obvious physical extremities, but also respiratory system, gastrointestinal system, bowel and bladder, etc. Typically death occurs from respiratory failure, or a patient with ALS getting pneumonia. It is very cruel… and people lose the ability to even swallow their own saliva, blink, eat, etc. Patients with ALS normally end up on feeding tubes, ventilators, have to be suctioned round-the-clock. There is no known cures for ALS or promising treatments at this time.

SMA (spinal muscular atrophy — my disease) is actually QUITE similar to ALS. SMA can be broken down though in to different levels. Type 1, 2, 3, 4.

Type 1 (which is what I was diagnosed with and had two different muscle biopsies to make sure what type it was, is the worst out of the 3, however; I still feel I am not at ALL a type 1 and instead am a type 2. I do not fit type 1’s onset AT ALL. Some people have even said that even with the types, one can be an broken down in to like an “early, intermediate, late” type. So if I AM type 1, I HAVE to be “late” type 1. — I will go in to a bit more description here in the next paragraph.)

Type 1’s formal name is “Werdnig Hoffman’s Disease,” and it is infantile onset (0-6 months). Type 2’s formal name is “Dubowitz Disease,” and it is intermediate onset (6-18 months.) Type 3’s formal name is “Kugelberg-Welander Disease,” and it is juvenile onset (>18 months.) Finally, Type 4 doesn’t really have a formal name, and is just listed as “adult-onset.” But it normally manifests after third decade of life with gradual weakening of the muscles.

I was diagnosed at 18mos. Now, I DID have symptoms prior to that, even right after I was born. I was “floppy.” But of course none of us knew, nor were the doctors as knowledgable about SMA back in 1978, because had they have been as educated on SMA… they probably would have paid more attention to the fact I was floppy and would have realized I had low muscle tone much earlier than 18 months.

The prognosis for type 1’s is not good at all. I was told I wouldn’t live past 4 years old. The sad fact is that, most type 1’s DO not normally live past that general age. But other than when I was diagnosed, based on the milestone markers for a type 1, I didn’t fit any of those as well. I actually walked for just a few months. Not WELL, and I fell all the time. But I still walked some nonetheless. The fact’s are though… every single person with SMA is different. Some live longer than others, some hit more milestones than others, some are sicker, some are weaker, some have a lot of other secondary complications due to the disease. So I really don’t like the idea of putting a timeframe on someone’s life expectancy. But I do feel if I am a type 1, it must be late… but I really think I am type 2. No matter the label… all of them are bad. But the later the onset, the better life expectancy one has.

SMA behaves symptomatically pretty much identical to ALS. The only difference being that SMA primarily hits children. You mostly will hear of type 1’s and type 2’s, but there are not nearly as many 3’s and 4’s. In fact, I have NEVER met a SMA Type 4.

When I used to do a lot of fundraising for MDA, I never really LIKED the separation of different groupings to raise money for JUST that particular group. Muscular Dystrophy has over 40+ neuromuscular diseases underneath it’s umbrella. Another, very cruel and bad one that is commonly heard of as well is “Duchenne” Muscular Dystrophy. It is a lot like SMA, but oddly enough, only affects boys. So when I raised money, I wanted the money to go to MD in general. I never raised money just for SMA for example. I feel all the MD diseases are so bad, that I just prefer, myself, to not have one singled out.

So when the ALS Ice Bucket Challenge started… first of all, I was thrilled!! I was thrilled that such a horrible disease, that is so close to what I have to live with daily, was/is getting SO MUCH funding and exposure from this viral sensation! But I wanted to spread the love over all the other muscular dystrophies. So what I did was I challenged all of my personal friends and family to do an Ice Bucket Challenge for me, and the rules were they had to say my name (gotta get my 15 minutes of fame at least! LOL!) and then say they were doing the Ice Bucket Challenge for SMA and/or MDA… and if they wanted to do it for ALS as well, that was fine with me as well! I wouldn’t want to take money from one to give to another! But of course it was up to them on how many they donated to, one, a couple, or all three… and really more than anything, was to spread awareness to include SMA and/or MDA in general overall. So here are the videos I got from friends and family!

ALL of these people here are either family, or LIKE family and all are long-time dear friends. Friends I have had for 15+ years!

My friends, the twins, Tim and Tom Rathke, and Karen Koch Rathke. They really took this to the EXTREME! Love it! Made a sign for me, and then got in a POOL with ICE and then dumped the ice water over their heads!

My dear friend Dustin Henderson. Dustin is a country music singer. Him and his wife Jodi Henderson have now moved off to Nashville, Tennessee to pursue his dream of becoming a country music star. I have a video or two somewhere here on my blog with him singing in it I just know it!

Another very talented friend of mine, Clayton Adams. Clayton, as you can see, is also a country music singer. He is very creative and he even did a song for the challenge! He is hilarious as well, and can always make people laugh at all of his shows. He does shows all over Texas!

Now here is Jodi Henderson, Dustin’s wife. She came in to my life a little bit later than some of the others here, but you would never know it. She married good ol’ “D” and became part of our family just like she had been part of the clan from day one! We had a lot of fun together when they lived here in Austin, and she is missed tremendously!

Next is Dawnyel Sullivent. Me and Dawnyel were best buddies for many years. I would spend weekends with her all the time way out in South Austin. We’d go out country dancing and to festivals, concerts, you name it… we were there. She threw me a HUGE 21st birthday bash at her home that I will never, ever, forget. It was simply amazing! The amount of people that came from ALL over Texas was astonishing!

Angie Blass Level and I have been friends since I was a teenager as the case is with most of the others here. However, most of the others here, I met from going out dancing at different clubs. Angie and I met on a bit different circumstances! LOL! Way back when I worked at Garden Ridge Pottery, we worked together. She worked in the “Party” department, and I worked in the “Crafts” department which were right across from each other. We got close very fast. We lost touch for quite some time over the years, but reunited by chance at a club one night! So then through FB we have reconnected, and I will always consider her a great friend!

Last, but certainly not least, my brother James Coburn. He did this video for me, and it made it even more special because my niece and nephew, Lucas and Olivia are in it, and not only IN IT, but dumping the bucket of ice water over my brother’s head! This made my day for sure!

So there ya’ go! If you see this blog post and you would like to see your video added, please comment and let me know. However, you must say “Misty O’Neal” in it (hehehe… that 15-minutes of fame thing ya’ know?!) and you can do it for ALS, SMA, or MDA. But you need to have at LEAST SMA OR MDA in your speech, and you can donate to any of all of your choosing. Here is the links for donating and learning more.

www.alsa.org (ALS)
www.curesma.org (SMA – My Condition)
www.mda.org (MDA – Goes to ALL of the 40+ neuromuscular diseases including SMA, ALS, and all the other ones)

Long Overdue Wall Decor!

So had a GREAT day today! It’s been in the making for almost 2 years. Right after I got my room totally remodeled, I then went out and bought a bunch of stuff for the walls. Right after that was when my health took a big dip in to the crapper (wounds, osteomyelitis/bone infection, a couple pneumonias in there, and oh yeah… speaking of crapper… had a GI infection to boot!) So life in many ways came to a total halt. All of this stuff got stuffed by the refrigerator in bags and haven’t been touched since.

My aunt Barbara promised me a long time ago she’d come down one day and help me decorate my walls as she has a great eye for just about everything artistic, and design-wise.

Also, for Christmas last year (or was it the year before that??) she had found a vintage-like old tin with a yellow and black lab on them. She said when she saw it she immediately thought of me and Nellie (my first service dog) and Intrepid. They even REALLY favor them in appearance! But they are laying in front of a fireplace and she said that it was kind of like a vision of them TOGETHER that got her. So she bought it and then it was an odd size, so her and my uncle Kenneth made a custom rustic frame, with gold crackle.

Part of my procrastination was also because I hadn’t ever printed up all the photos for the picture frames, as the big one has a lot of odd sizes and was going to be a bit of a challenge. So Barbara asked me about 1.5 weeks ago about decorating my room, and said she would drive from Temple and help me. I told her I hadn’t filled the frames, but we decided we’d go ahead and hang everything… keep the model family photos in them, and then that way we could get it done, and I’d have some motivation and inspiration to fill them.

So she came down today and we went to go eat at Tortuga Flats, and it was our first time there. It was REALLY good. Although mom didn’t like hers. But we ate, then came home and got to work. We used everything I bought… surprising with one spot left to work with — over my TV. I had been wanting to do this for so long… ESPECIALLY after she gave me that picture it just made me sick it wasn’t up on the wall somewhere. But I didn’t want to just hang it carelessly somewhere.

10597190_10152659323342718_1544790967_o

10594288_10152659351092718_239453327_o

10572848_10152659412427718_1792578877_o

10573835_10152659724382718_328791166_o

10581537_10152659438427718_55471941_o

10596669_10152659426217718_85428510_o

10605651_10152659407327718_2082049768_o

New/Old Roommate

My little brother Ryan is moving back home just temporarily for around 6 months or so. He has been on his own for nearly 10 years now. He has had roommates, and lived by himself, which he honestly preferred but couldn’t always afford. He had always lived in apartments, up until around a year ago, and he moved in to a house that he rented. He couldn’t do it totally on his own, so he moved in with his best friend; which is a female, and her daughter. Then she ended up moving out, but continued paying her part until he got a roommate. So then his male best friend moved in, and he had lived with him before (which honestly didn’t end up so good) but he gave him a second chance. So he moved in. Then it was being difficult for even those two to make ends meet, so they took on a third roommate.

Well long story short, and without getting in to too many of the personal details… things did not end up well again and Ryan was left hanging by both of the roommates. They totally ditched him pretty much.

Our house is SO tiny, and Eric ended up occupying both of the bedrooms in the back. One he used just for sleeping in because it has a window AC in it, and the other was the room that had his TV, stereo, he had some junky old furniture in it … an old couch and such. That was the room him and his friends hung out in, the room he used for entertainment and playing video games and such.

Well this time, since Ryan was left so high and dry, he couldn’t afford to move in anywhere on his own this time, and the notice was so short. So he HAD to move back home this time.

Dad has been working non-stop around here. Eric got his bed moved in to the other room and dad worked like a slave cleaning up and out Ryan’s old room. He even then took it a step further and he spackled all the holes in the walls of the house (starting with that room, because with teen boys, there was quite a few holes in the walls) and then he totally repainted that entire room last night. Looks really nice now! Today dad is helping him get all the rest of his stuff moved in to storage, and get what he’s bringing here (which can’t be much because the room is so small) over here. Really all there is room for in that room is his bed, and BARELY his TV. He has an 80″ (yes, you heard me right)… and 80″ inch TV!!!! Which will cover an entire wall in that room! I still can’t even imagine what a TV of that size will look like in such a tiny room.

So yeah, our already tight household will be just a little tighter for a bit! This oughta be an interesting experience! He was an 18-year-old when he left, and now he’s a 27 year old!

The good thing about this all is that dad is on a home improvement kick for the entire house!

My Horrible ICU Experience

Most of you probably know, but some may not… On July 5 I got another episode of a sudden pneumonia. I had been just fine the evening before and had gone out to a movie with my little brother, Eric, and met up with a good friend, Solomon. But this time it was a coincidental double-whammy. I also got an instant GI infection. It will always be a mystery to me and everyone else involved on how this could have happened. All I know is it happened.

Started out not feeling so hot and began coughing. When I began coughing, my dad began doing CPT (chest percussion therapy) i.e.; cupping hands and drumming on my chest/lungs to break up mucus. Because I wasn’t being able to get anything up, yet I was coughing so hard I couldn’t stop. I told him I needed to use the Cough Assist (which is a machine that forces air in to the lungs to expand them, then immediately sucks the air back out, which mimics a cough for people that are not strong enough to cough, and it literally sometimes pulls up and out mucus) because I thought I may be able to get it up that way as it normally helps a lot.

He did a few rounds of it, and next thing I knew, I turned sick to my stomach and began to vomit. Then next thing I know, I began shitting on myself. I ain’t too proud to admit this was happening because I had some kind of horrible sickness. I will explain just for the reason of a better understanding of what happened. It wasn’t diarrhea in the sense of “water-like”… but it was super soft … sticky-like crap… and a LOT of it!

From there, everything went downhill and I mean FAST! I couldn’t stop barfing, coughing, and continued to crap. They couldn’t even give me phenergan suppositories for the nausea because they wouldn’t stay in. I was running a fever, and they couldn’t get a hold of my symptoms to get them to ease up any. I was getting worse. Mom and dad had to call 911. Right as they came, I crapped once again (it was right after they had just gotten me cleaned up.) Firemen and EMTs were banging on our doors to let them in, but my parents were trying to get me cleaned up again, and spare me SOME dignity. Yes, they were medical people, but they also knew that THEY wouldn’t clean me up… they’d just whisk me away quickly to the ER, and who knows how long before someone would actually clean me up. My parents kept yelling “hang on! We are trying to get her cleaned up, she has shit everywhere! They kept saying “Let us in! We are here to help! You have to let us in now!” Poor mom and dad, they were rushing like crazy to get me clean. They finally opened the door as mom was finishing cleaning me up and she told them “SEE! This is why I wasn’t opening the door yet! She needs to be cleaned up!”

I got admitted to the hospital needless to say. I didn’t even get in to a room until the very early morning hours of the next day. We had to basically sleep in the ER… my poor mom. They put me in IMCU (Intermediate Care Unit) … My nausea was off the radar… by this time it was just horrid dry heaves. I continued to shit on myself back-to-back … so much so, they told my mom to stop putting my pull-ups on me and they just placed a thick chuck pad under me and just let me go and kept changing that out. I have never had nausea so bad that phenergan (especially IV phenergan) didn’t even work! NOTHING WORKED! Zofran has never worked well on me at all, but it was so bad, they had to alternate giving me IV phenergan and then zofran because I kept begging for more, but couldn’t give me phenergan too often. So they used zofran in between times. Phenergan also normally knocks my ass out… but I was so incredibly sick, I couldn’t even sleep! I was in pain with my hip as always, as well as the super soft wound quality air bed they had me on was still making me sore. So I was getting Morphine frequently too… and still not enough to allow me to sleep through the nausea! FINALLY… I was so sick, and so incredibly exhausted and out of my mind with sheer panic over everything, they had to start giving me some anti-anxiety IV meds as well. THAT finally helped to knock me out… but even then, every time I regained “consciousness” should I say, I’d wake up wishing I hadn’t have because I’d wake up heaving again. I have never ever been sick like that in my entire life!

So yeah, I had quite the cocktail of drugs running through me… Morphine, Phenergan, Zofran, and I *think* the anti-anxiety med they were giving me was Halcion, but I am not SURE on that… all I know is they said it was an anti-anxiety med. I also then had 4 different antibiotics hung, and 2 bags of fluids with potassium in them because when I am in the hospital, due to lack of nutrition (as I normally don’t eat well in the hospital anyway even if not sick because the food is so bad) my potassium levels drop fatally low. I was able to give them a heads up on this and told them to start giving me potassium before it dropped. Especially would likely drop because I wasn’t even able to eat or drink anything.

I basically went blank from this point out. All I remember is random moments of being alert and wishing I wasn’t because I felt so bad… I’d wake every time they had to clean me up. I had no recollection of time or anything though. At one point, they had to call in wound care because I started getting red spots on my left rib cage from laying in the bed. They put a big ole DuoDerm patch on me to protect my skin there. They kept me smeared in barrier cream in all my lady parts as well. Next thing I know, they must have found a Clinitron bed, and they moved me on to it. Thank God!

Another part I remember was being asked what my “wishes” were and if I had advance directives in place. They really shouldn’t have asked me these questions because I was in no mental position to answer them correctly, and I DO have legal papers drawn up (but they were at home) regarding my wishes. I was asked about ventilator support. I told them yes I would try, and was trying to explain more in-depth, but I was about as clear as mud in my description. I WOULD be willing to go on a vent, but not live on one if I couldn’t get off of it, and wasn’t able to function while on one. My wish would be to be removed in a situation where it was 100% life sustaining and wouldn’t live without it, and I was just laying in a bed and not able to communicate etc. In other words, like basically dead, but just living by a machine. All of this is much more clear in my paperwork. My mom then when I said yes was like “what?! Misty you said you didn’t wanna live like that…” etc. etc. and I couldn’t even argue my point with her, I was way too out of it. I explained it all later when I got home. She is still worried the paperwork isn’t clear enough. I need to look it over again as it’s been a few years since I did it.

Then I remember a doctor coming in, a doctor (pulmonologist) from my main pulmo’s practice, that I do NOT like. He said I had no reserves left nutrition-wise because I couldn’t keep anything in. He talked me in to trying an NG tube. But he didn’t tell me anything about the procedure. I thought it would feel like being suctioned, which is HORRIBLE… but it was so much worse!! They tried shoving a tube the size of one of the fat fast food straws down my nose. The tubes I had seen before were skinny thin tubes… maybe the diameter of thick piece of spaghetti. I also didn’t really realize I’d be wide awake for it. So next thing I know they are trying to shove this monster-sized tube down my nose and yelling at me “swallow! swallow!” I was screaming bloody murder and fighting them with everything I had in me telling them to STOP! It hurt so bad!! I am not sure if they stopped because I told them to, or because they couldn’t get it in. Because now that I look back, I am not sure that placing an NG tube on someone like me would be easy or even possible, because my esophagus is even no straight and my anatomy inside is so whacked and everything not where it is supposed to be, if they could even get all the way down to my stomach if they had continued trying. I know placing a PEG tube has been ruled out because my stomach is under/behind my rib cage. I found a way it COULD be done, the most safest way, without cutting me open real big, but I also haven’t ever found a doctor that would consider doing it this way. Neither of my parents were there when that happened. I feel he did this on purpose. I feel he took advantage of me while they were away and asked me to do something extreme when I wasn’t of sound mind during that time and he knew I wasn’t, and also asked and did it one of the few times neither of my parents were there! I remember he scared me in to it, basically making it sound like if I didn’t do it right then, I didn’t have enough body reserves left to live much longer. So anyway, needless to say that didn’t happen. 

I researched this a lot the last few days. I realized the tube they used, after looking at many different ones online and watching NG tube placement videos on YouTube, that they were placing a standard-sized adult NG tube down my nose! Even when they have had to suction me in the past, they have had to use pediatric-sized suction tubes. Someone as tiny as me, an adult-sized tube should have never been used! Also, I got to thinking about TPN (total parental nutrition) which is a different form of getting nutrients and nutrition in to the body. It is done through a central line and is basically a cocktail of vitamins, calories, etc they give you intravenously. I was thinking that I wondered why this hadn’t been thought of, and I wondered if they could even get a line in me… then it hit me… duh?! I have a central line! So then I began wondering if it could have been used for TPN. I mean if my life was so “on the line” because I was basically starving, then why wasn’t EVERYTHING thought of, and try to do the less invasive thing FIRST? So I did my homework, and a PowerPort central line CAN be used for TPN. It also CAN be used simultaneously with administering fluids and medications. So why in the hell did they not think of this and using what I already had?! My PowerPort to get some nutrition in me! Grrr!

Then all the sudden I seemed to wake and be in a totally different place. I had been moved to ICU. I remember just kind of opening my eyes and my brother; James, sister-in-law, and my little niece and nephew; Lucas (2) and Olivia (1) were there, as well as my brother; Ryan. I remember my dad raising all kinds of hell because neither him nor my mom were called to let them know I was being moved to ICU. They found out when my brother, James, showed up and said I wasn’t in the IMCU room I had been in. My dad had even written on the dry-erase board in my room both numbers for him and mom to be contacted if ANYTHING changed or emergency.

By this time it was Wednesday, and I was STILL dry heaving and crapping on myself. I was still a hot-mess when it came to anxiety. Then the craziest thing that has ever happened to me happened. I began hallucinating. It started where I thought water was running down the walls of the room, and under the ceiling tiles was a fish tank, with fish swimming around. When I told this to dad, my nurse came in and he said “don’t you see the water in the ceiling and the fish?” She kind of laughed… and then he said, “no really, don’t you see it?” and her smile turned in to a straight face and she says, “wait a minute… she really sees that?” and he told her “yes.” She then asked me and if I really believed that, and I told her “well now that you are asking me that, I figure it’s not really there.” I apparently also told mom and dad I was seeing lizards, and told my SIL I saw “Bill Murray from Santa Claus” and what I meant by that was Bill Murray from “Scrooged.” I didn’t remember that, I only knew thats what I had to have meant because when she told me this later, I had in my mind the image of him in “Scrooged”… which had to do with Christmas.

But then, things took a turn for the worst. My parents faces began changing and morphing in to demonic monstrous-like faces… lizards turned to snakes… and what started off as funny and friendly hallucinations turned to “A Nightmare on Elm Street.” I saw images I can only explain as horrific. Like a zombie apocalypse. I saw people ripping each other to shreds, blood and guts galore… and people being eaten. I saw flashes of all kinds of images and it didn’t matter if my eyes were open or closed. It was horrible!!! If my eyes were open, then I saw things on real people and things in the room. If my eyes were closed, I saw flashes of all kinds of images that were not based on actual people that were with me. I began screaming begging them to make it stop. I don’t know what they gave me, but they gave me some sort of sedative or anti-psychotic drug to knock me out and/or make it stop. My dad said my nurse was great during this, that she was rubbing my head and talking very softly to me telling me it was all “ok” and to think good thoughts, and things like this as I lay there sobbing. I don’t remember this.

It eventually stopped after whatever they gave me. She told them it was likely “ICU Psychosis.”
http://www.medicinenet.com/icu_psychosis/article.htm

She said it can happen from a number of things, all the drugs one is on, and when the brain simply cannot handle everything and the patient basically has acute psychosis or temporary delirium set in. She said especially when your body is dehydrated, lack of sleep, or starving for nutrients (which I hadn’t eaten anything in 4 days by this time), in pain, and just everything combined that you basically lose your mind temporarily.

The next night, speaking of lack of sleep… I had a male nurse that I about wanted to punch in the face. I was now on the Clinitron bed and was sleeping very comfortably, and I am not kidding that he woke me up about every 15 minutes and had me answer questions like “where are you?”… “do you know your birthdate?”… etc. and finally I begged him to let me sleep and asked him why he kept waking me. He said because he was required to wake me up any time my O2 fell below 92. Well I am sorry, but 92 is NOT that crazy low when going in to a deep REM sleep, and have my condition, AND pneumonia. I am not sure who came up with that number, but to me, it wasn’t low enough to wake me up considering the situation! It isn’t like they wouldn’t KNOW if I fell lower than that! They can set the alarms to go off at any number. Now if I fell below like 89 or something, then yeah… but 92?! I know he was just doing his job, but my God… I had just had ICU Psychosis earlier that day! Sleep could be vital to that not happening again! Every time he said my name my eyes flew right open, and he said I always bounced right back above 92 immediately.

Next thing I know my eyes open and there is one of the hospital doctors standing by my bedside. He asked me some of the normal “mental” questions, and I remember having a hard time answering them. He then asked me what day of the week it was. I told him “Monday?… Tuesday at the latest?” He then told me “No, it’s Thursday.” My mouth fell open. I could NOT believe I had been in the hospital nearly a week. I really couldn’t. I was shocked. I had no recollection of time. I didn’t/don’t even remember the majority of IMCU, which I was there until Tuesday. I just remembered bits and pieces, apparently just the bad moments when I would wake from all the drugs and feel horrible… and then I’d be out again.

Starting on Thursday I had a remarkable turn around. The doctor’s were floored at how much better I was doing. My X-rays were showing the pneumonia was much better, and my nausea and diarrhea had finally stopped. The GI doctor was simply at a loss for what was causing the severe nausea and diarrhea because they ran every single test possible, and even did x-rays which came back fine. She had no answers. The ONLY test that wasn’t done was for C. Diff. (which is a bad condition that can be extremely hard to get rid of in your GI tract. It sometimes is antibiotic-resistant, partly because it is due to being on antibiotics) I am not sure why, but on Thursday, the doc said my next bowel movement they wanted a sample to test me for it. But, they really didn’t feel it was C. Diff because of its consistency (they said it’s normally like water) and they were there apparently when I continued crapping on myself back to back and said it didn’t “smell” like C. Diff. I never did another stool while there, so they weren’t going to make me stay for the test. But they could not believe what a remarkable turn around I had had, and told me I was very lucky.

The moment my nausea went away, I was ravenous! I found some food that was half-way decent at the hospital. Chicken tenders with mashed potatoes and gravy. I ordered it every meal until I left. I ate and ate.

I got to come home on Friday night.

I stayed on oxygen for the first 5 days. Then on Wednesday of this last week, I woke with severe pain in my right ribs. It got worse and worse. So bad it hurt to breathe and my dad had to be super careful when picking me up as it felt like I was being stabbed. It felt like my ribs were broken. Back to the ER I went. Sigh…

Basically they did X-ray and everything came back normal. They diagnosed me with pleurisy. Which is basically inflammation of the lungs and they then rub against your ribs. Its very painful. Luckily it got better within the first 48hrs. and I am much better now.

But I will say this… I feel I have a bit of PTSD following this last visit. That ICU Psychosis and the loss of memory and time really did a number on me. Also the feeling of my mortality and how close I was to it, so quickly. It all scared the living HELL out of me! I cried a lot the first couple of days I was home. I had a ton of questions as to what all happened. I was so happy to be home, but I was like in shock over everything that happened and to think that without any notice it was almost over. So any additional prayers would be appreciated, just to help me get all the mental images out of my mind, and for me to be able to get past this mentally and physically traumatic event.

I have my follow up appointment with MY pulmonologist, Dr. Shapiro, on Monday. I plan on giving him an earful about the whole NG tube thing. He specializes in seeing patients with a neuromuscular disease. I don’t think he will be happy about it, but who knows because the doctor that ordered it was one of his partners, and doctor’s are notorious for backing each other up. But he’s a pretty big straight shooter… and intubation of any kind on a neuromuscular disease patient he doesn’t take lightly… and while this was a feeding tube, it is still considered a form of intubation. 
If I have to go in to the hospital again… well it’s more of a when I go in again, not an “if,” I won’t be going to Brackenridge. Because one thing I have been upset about… well a couple of things… is that the last two times I have seen Dr. Morrison, which has the personality of a ROCK and always wants me to stay in the hospital longer than I know I need, and then made (in my opinion) bad calls like the NG tube deal. Also because my poor mom… all they said they had available for her was this stone-age looking chair that they claimed reclined, and it didn’t really recline back much at ALL. It was super uncomfortable for even my dad to sit in. Much less my mom, which now suffers from a lot of pain daily from severe arthritis, all the years of lifting me, and now she has cellulitis which even after second round of antibiotics that can’t seem make it go away completely. She had to sleep damn near sitting up for two nights in a row in that thing. They didn’t have even (what they call) a cot (which is basically a fold up mattress on springs. Those are super uncomfortable too, but at least one can lay down and SLEEP! When I was in for osteomyelitis, they had an arm chair that the end of of folded out in to a sleeper chair. If you weren’t too tall, which mom isn’t, you could fully lay down on it. It was actually pretty comfortable because it was fairly firm and provided support. Then you could easily fold back in the end of it and get it back in to a chair, but the chair was large, had a supportive back and arms to it. I guess all of those were being used?? They said they didn’t even provide the cots anymore.
So next time, I will be going to Seton Main. I *think* and will ask Dr. Shapiro about this on Monday, that he does rounds at Seton Main WAY more than he is at Brackenridge. It is literally right across the street from his office… so it makes sense he’d be there more. At Brackenridge he only is in ICU… even then I don’t think he’s there much. Dr. Morrison asked me one day if Dr. Shapiro had been in to see me. I told him no, and he just kind of said “oh.” So not sure why he didn’t come see me or if Dr. Morrison was confused. But also, it’s a nicer hospital. Brackenridge is VERY, VERY OLD, and hasn’t been renovated in years. Rumor has it they are building a brand new one in a few years. But it is also a charity hospital. So every homeless person in Austin or transient is there. So it is ALWAYS filled to the brim with patients and their ER can be SCARY! So it’s hard to get a room and bed there, and then a lot of times the floor you are supposed to be on is full. Like they were going to move me out of ICU the last day I was there, back to IMCU and IMCU was full, so I was listed as an IMCU patient, but stayed in ICU… which I preferred because I felt a lot safer in ICU since the nurses are RIGHT there just a holler away. 
I tried Seton Main for the first time when I got my pleurisy diagnosis. Their ER only had a few people in it, and I got in to triage in minutes, and taken from triage right to an ER room. Saw the nurse right when I got in, and the doctor within 20 minutes. My nurse was one of the most funniest and amazing nurses I have ever had I think! His name was Joseph. The doctor was GREAT too. I was still there for several hours, but that included blood work, x-rays, etc. He told me to keep coming back there after some discussion as to why I went there instead of Brackenridge this time. He asked me directly why I came there. Also my understanding is every room has one of those window couches in it. That would be great and something mom could lay down and sleep on. Also was told some rooms even have a full living room-like sitting area for family in them, divided by a wall from the patient. Don’t know how you would score one of those rooms but wow! Said could probably hold 10-15 people. So I feel if we went there, mom would likely have a place she could lay down, either already built in to the room, or they’d be able to provide something… and the rooms are much nicer. Seton Main is just as old, if not maybe even OLDER than Brackenridge, but like I said, it’s newly renovated, and sounds like the accommodations are better, and it isn’t such a cramped hospital. 

Saying Goodbye to my Granny

Just woke up about an hour ago. Driving up to Temple to see my Granny.

This may be the last time and it’s going to kill me to see her in the condition she is in. She is 91 and has had a massive stroke. She can’t talk, can’t eat or drink, her right side is paralyzed. They say without intervention it’s only a matter of time before another blood clot hits her.

We are looking in to Hospice, and are going to try to just keep her as comfortable as possible. My granny was like a 2nd mom to me. This is going to be tough and going to break my heart. This is why I was asking for prayers the other day. At that point, it hadn’t been confirmed it was a stroke. Her condition was bad, but it has gotten a lot worse since then. Please just pray that God is ready for her… that she doesn’t linger on and suffer… and that she be reunited with my Paw Paw that we lost 23 years ago to a sudden aneurysm. We are selfish beings, and we want people to stay around for us… and we don’t want to lose her, at the same time… we can’t be selfish… we have to let her go, and pray she goes as peacefully as possible. Right now things aren’t so peaceful and she is in a lot of pain and anguish. My aunt Barbara is meeting with the hospital today regarding getting her in to something like Hospice–is my understanding anyway