A blog is a personal journal of your daily life as a stroke survivor or stroke caregiver. Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations. You can make it private, just for your eyes or public and share your personal thoughts with your friends. Why not try it, create your blog and start writing and see if it helps you.
I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.
The specialist was fairly brutal because I think he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry. Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?
So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.
I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.
My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.
On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people I have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.
There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.
Ah yes, an exciting day full of teachable moments...
I have a pretty bad ant problem under the paving stones. I went onto a gardening website and asked about the best way to get rid of them that is both earth friendly and not dangerous for Daisy. Daisy is a Golden Retriever who gets into anything and everything, even at 10 years of age. I got a reply - use diametaceous earth. I have a photographic memory, and thank goodness, I didn't lose that post stroke. I could picture the container, and exactly which cupboard it is in. It's been in the basement and moved around for about 20 years, and that's no exaggeration. I can't remember the last time I used it. So, thinking it would be a great idea to start by trying it on the front path, where Daisy can't go, I set off to start torturing those hard working ants. First squeeze of the bottle, and the plastic container cracked, spilling about 32 ounces of white powder all over the walkway, my bare feet, my sandals, and thanks to a well timed gust of wind, all over my clothes.
Lesson learned - what NOT to do:
Wear good jeans, bare feet and sandals.
Don't check for breezes when using a powdery substance.
Be sure to use a really old plastic bottle, which will immediately crack open.
Decide to sweep bits of it all over the sidewalk - which now looks like some kids went crazy with white chalk.
Strip down immediately, hose down shoes and feet before coming into the house.
Wash all clothing in the washer.
Forget that the washer is on and have a shower, as there is nothing like those nice moments of no pressure while there is soap in your eyes.
Be sure to hurry, so that when you are getting the soap out of your eyes, you miss your eyes and your fingernail goes up your nose and thanks to the blood thinners, a robust nosebleed commences.
Change into pyjamas at 6:25 pm and call it a day.
Now all I need to do is buy some more on Amazon, along with a proper dispenser, and find a YouTube video on proper application
I feel my hubby is very evolved in his spiritual growth journey, there are some things he is very good like taking care of his responsibilities, he is amazing dad, & human being but he is also very stubborn man & won't change his point of views to make other person happy, which sometimes does create conflict in our relationship, I love him & grateful for having him by my side, but my love is very conditional some times, I feel very annoyed when he won't do certain things which makes me happy. for example I feel we both have worked our tail off in achieving our American dream from day I landed in this country some 25 years ago, & after getting stroke at young age, I do have sense of urgency. I like to experience all finer things in life & I do feel I deserve every single bit of it. Finer things in life does make me happy though my happiness doubles if he also enjoys those things with me, versus, he does not care about it as much, he will be happy in all things, he thinks he gets equal joy from simple things in life & donate rest of the money away. versus my feeling is enjoy those finer things in life too. I don't want to cut corners on myself or my family to be donated away any more. I feel all my younger years i have made sacrifices & made peace with living in scarcity when I was young & able bodied person. Now I want to enjoy with whatever abilities are still left with me. I know I need to work on my own happiness & don't worry about whether he joins in or not, & he needs to learn to enjoy things which gives his family pleasure. he is very detached from us in that sense, his joy is not attached to seeing his family happy. So I am all torn & confused & still work in progress on my spiritual awakening path
So today My Doc said right lung sounds like it is not filling up all the way prob due to the edema problem. This year I am really suffering with edema stuff. So up diuretics and hope kidneys still function well in 2 weeks. Then it took me 4 hours to be transported home. The man who dropped me off is a bully. Everyone at the home heard him telling my cna that in 10 minutes he would leave without me. Well I was waiting for help getting in my wheel chair and hang my bag on it. I have a tote I got in the gift store window with matching cosmetic bags and a contrasting scarf on it. I always have it along. But today I failed to bring my charger and my tablet. I failed to put my supportive boot on my foot in the rush to leave. All of the drivers usually wait until I am actually late...it has happened. No one left. But this one was loud. I wanted to leave a friend a pack of cards on my way out. I did because I had that time. Then he went in the busy street loading me instead of the safer parking lot. I was afraid but he said he was in a hurry and parking there was easy. He was quick and rough. I said the belt was too high up I will slip under. There was no over the shoulder. I questioned him about it. He said I needed to relax and be quiet. I did...I called my insurance to make complaint on this driver and this driving company because he was arguing at me for stuff even saying I was not nice to my cna...oh the one I rushed for his sake?? He said I was not a nice person. So I just called someone to make sure he did not pick me up. He got lost...took me to a place way out of the way. LOL!!! He called dispatch saying I refused to tell him the right address. Well it sounded like it but who was listening. I told it to him...while the rep was on phone hearing it all. I could hear her apologize for what was going on but then we got on the right Road and we were there and so I needed him to bring me inside wheel me in and he kept saying he didn't have time to bring me in and I said what are you going to do leave me outside the door and he said that's all he had to do so there was a valet parking there in the valet guy was listening all this so the guy ended up Wheeling me into my doctors check in place like he was supposed to just because other people were there looking at it and he says okay here I said this is fine and he just left not have a good day. So I continue to talk with the insurance lady and she apologized over and over and said that that was really so unprofessional and that she did not want me to be alone with him so she had stayed on the line with me and I appreciate it so much because she could hear all that is going on and I think that the guy was sort of oblivious to it I think he thought that I was just talking to a friend and maybe because I don't think he knew that I was making a report. So then after my appointment was over I needed to go over and get a chest x-ray so I asked the office girls if she could call so that my driving company could take me right over because on the paperwork and also what the doctor had verbally told me was that I was to go directly over to get a chest x-ray. So then the transportation company was saying no there was no same-day appointments and I said ask to speak to a supervisor because if it's urgent then they will allow it so here we go. So they want three days notice and that's fine but it's not always possible. So anyway they said they would do it so I sat waiting. So here comes that driver that had been such a nasty bully and got me lost and I did not want to get in the same vehicle with him again and I said no no no no I'm not going with you. So he left and I saw him drive away and I told the girl at the desk need to get another driver to come out and she was just too busy so I grabbed my phone and I called and tried to make the reservation myself and I said why did you send out that driver when I was assured that I would not have to go with that driver again. So anyway all it did was punish me because they said that it would be an hour or two before somebody could come and take me across the street to the Radiology. If only somebody could have just reeled me across the street. So I sat there for not 1 not 2 not 3 but 4 hours. I kept calling are the people in the office ended up giving me a bottle of juice and a bag of chips so I had a lunch. I had asked someone if they are going on their lunch break if I could give the money and they could bring you back something but they made an excuse and so I figured that wasn't allowed. Unfortunately when it's first it happened one of the girls at the desk at offered to drive me over but I said no because that was against the rules didn't want to put her in jeopardy so she was really nice but I just didn't think that that was something that she needed to do and I was so confident that the driving company would come. so anyway I filed a grievance but all that does is they're going to figure out some way to spin it that it was my fault for not wanting to get in the car with the bully man. Anyway hopefully the sky will not be sent out you see I had already filed so that he would not be my driver but they sent him again and I was in a hurry to get there so this is what they do to me. So I decided that I couldn't go get my chest x-ray because it was time for my pain pill now I had brought enough to stay there for a couple of hours but I never expected that I would be gone like that I wish I could take all my medications for the day because you never know when you are going to be gone But anyway I had to skip this chest x-ray. So I called to see if I could go tomorrow. So here we go. That's when whoever was scheduling said that the doctor always says go to Radiology today and at that doesn't necessarily mean that it's a stat or an urgent okay so in my world when somebody says proceed directly to Radiology today that sounds like that's what I should do. And now I've been told that it was not so important it means that I just sat waiting around to go there for nothing I should have just had them bring me home so anyway but it wasn't just the problem with getting another driver to come out you see they sent that driver to the wrong address again and then they actually sent somebody to the nursing home to pick me up thinking that I needed to be picked up there and more than one driver came in instead oh you're in a wheelchair I can't take the wheelchair. So it was a comedy as I just sat there waiting now I find out that it was for nothing. anyway it's not like I would have gotten home any sooner. but I wanted to find out about getting the chest x-ray and so the final verdict was that I could go next week and that was fine. and I'm actually grateful because I'm so exhausted and sore it's hard to sit in a wheelchair like that. I mean really my back is aching my legs are aching. Well it's because I ended up climbing into a vehicle I had to get out of the wheelchair and climb into a little mini SUV. so my muscles are really sore too. So anyway I just said okay forget it I don't want to talk to any more people about this whole thing I just want to watch some movie and up my dinner and just forget about it and then I fell asleep.
so now I'm up in the middle of the night kind of restless and wide awake. okay so here's the new thing
I have been diagnosed with sleep apnea. And always one to do something spectacularly I have the worst sleep apnea that my doctor has ever seen he told me. so he wanted to show me the chart he said over 30 is considered severe. He showed me the chart which showed 2in of nearly all the blue filled in. he said that I had a hundred and six. he told me that I should never even nap And that I should always have one of those oxygen readers on my finger to check the saturation. So okay now about my CPAP machine well I didn't get the run-of-the-mill CPAP machine I got a BiPAP machine not only does it blow air in my mouth when I'm inhaling it blows air when I'm exhaling!!!
anyway I feel like I'm in a tunnel now they do give you 30 minutes where it's not blowing As hard as it will be blowing later when you're sleeping. So it's actually tolerable at first not pleasant but tolerable. Okay so when I wake up in the middle of the night to take a pill and that thing is blowing like crazy Thankfully I go back to sleep pretty quickly most of the time but when I don't then I just take the thing off. there's a lot of times that I wake up and I've taken it off in my sleep. I feel like I'm suffocating because of all the air blowing in not because of the Mask. I tried the new nasal pillows and the nasal mask but it feels like the air is scraping off the inside of my nasal cavity maybe even blowing my brains out. So I didn't use it for a good six months it just sat there. And yes I asked if I could get the pressure lowered and I even ask if I could try the full face mask. The answer was always the same this is what your doctor ordered because this is what you need. well it wasn't that I just didn't want to use it it was that I physically could not wear the thing. And then a couple of things happened
first of all I signed up for a study called overlap study and they look at why people don't use their CPAP machine and how to help. so I was randomized and I was put into the group that would do some online activities and watch online videos that would tell me all about it and I would be able to speak with the coach. so anyway there were seven big chapters with each having between 3 to 7 modules inside that talked about the benefits how to use it how to clean it Stuff like that. So rather than go with the scare tactic sleep or die there's was supposed to educate you and convince you and support you that this was the greatest thing since sliced bread. So then the coach called a couple times that were inconvenient. Imagine that. I have the most free time than anybody I know but we had to reschedule. so we did and when we were talking I had already finished all the modules. so he said do you still want to talk to me since you're finished. I said that's why I wanted to do this so that I could talk to somebody that somebody is holding me accountable And somebody understands what I'm going through. The first time I talked with someone it was a respiratory therapist he was very knowledgeable and he's the one that said with the high-pressure you have you should not be using those nasal pillows because I know how uncomfortable that can be. Finally somebody that actually understood that I wasn't just setting it aside saying I don't care if I die in my sleep that I'm really having problems using this real problems in fact now I now have another album I'm falling asleep in my chair and I'm sleeping there rather than getting to bed and put the mask on. but it could put the mask on while I'm sitting in the chair but of course I tell myself I'm not going to go to sleep right now I'm going to finish my tea I'm going to finish coloring I'm going to finish watching a movie all these reasons I'm still eating.
so I am short of breath for real. so I'm using oxygen. so right now the oxygen is not hooked up to the mask and I said I think that I want my oxygen hooked up to the mask but the doctor needs to check out all these things I've got to sleep overnight with some monitor thing he's got to look at there's all this stuff he has to do. Another excuse for me to just set the mask aside and wait till another day night.
when I met with the doctor I had been using the machine only because I had signed up for this study I was going to meet my goal and I was going to meet my goal of using it for 4 hours at night. That was supposed to build up some kind of Tolerance get used to it and maybe I'd actually sleep through more than 4 hours but I have to take a pain pill so that's not happening. I'll get back to the pill thing in a minute. so the doctor says I see that in the last 30 days you've only used it 30%. Ben mind for the last six months I hadn't touched the thing. so I said to the doctor well that's 30% more than I've ever used it before. But the doctor ask to do his job so he had to say a lot of scary things to try to convince me I need to use this. the problem is knowing I need to use it and that it's dangerous if I don't is not helping me to breathe Against the Wind Tunnel.
so I told the doctor that when I had been in the hospital for 7 days that the respiratory therapist had come in and surprised me and said would you like your CPAP machine hooked up now. and I was so surprised because I never used it I said no I can't use that and she gently said well why and I told her why and she said well why don't you just give it a try and so I said okay I would she put a full face mask on me and I tried it and there was no big puffs of air no wind tunnel it was just a gentle steady stream and and I didn't notice that I was being suffocated and I wore it every night for 7 days. So I suspected that it wasn't on the setting I usually get and the doctor said probably not and so he looked it up and apparently the setting I was getting in the hospital was a v and the thing that I'm getting right now is 16. So I'm getting a little bit discouraged because I'm really not using it more I'm just feeling a little bit more depressed and when I take their little how are you doing today surveys it's like the more I don't use it the worse I feel Yet even that doesn't make me want to use it. I know I'm being very immature and irrational like a child that doesn't want to take her medicine but breathing is something I do comfortably without it. yes it is scary that if I stop breathing I may not start up again. I wonder if all those little episode things that they're saying have anything to do with the fact that I'm in constant pain. so there's that so because everything has been harder to breathe lately with this fluid from the edema and between the sleep apnea I really wanted to get that chest x-ray. plus I need a TB screening I was exposed to TB but apparently I just had to take the medicine it never went active but I had the Little Dipper kules floating around and so for 10 months I took various medications. I'm sure all is well. But right now I don't know when I'm going to get that chest x-ray because it looks like it will be next week. I really look like I'm always not complying and I know that the doctors will think it's ridiculous and I'm also have my legs wrapped up again because they're trying to prevent another bout of cellulitis I've had two bouts of them on both my legs so now I have to wear those little balloon support pump things and at first they said do it twice a day morning and night for 1 hour well again I have to do something spectacularly awful so that didn't work at all on me.
so the doctor told me to put them on three times a day and perhaps leave them on for 4 hours per session. So where does the living happen in between putting my legs and knees boots made out of bouncy material and fills up with are supposedly fixing my lymphedema problem. so I'm out of them constantly at my legs hurt and I am just swollen but I'm wrapped up so I've had to take the wraps off twice on one Leg . Right now it may not be wrapped sufficiently to prevent the swelling. but I had to take it off because my leg was red and had striations on it. So tomorrow we must take it up and look and see if the skin looks better because it shouldn't be red like that then I'll have to be on antibiotics
so until my wound is completely healed on my heel the pressure sore I cannot get the spinal to relieve my pain that's why I'm taking the extra dose of pain medicine instead of taking it every 6 hours I'm doing every 4.
the end of last year I have that spinal electrode trial and I was going to get the electrode put in permanently which would enable me to go back to therapy walk more get stronger work on my vestibular problems and most of all not have to take the drugs maybe even Beyond cutting back maybe I could cut one of them out even maybe I wouldn't have to take the Lyrica. I was ambushed with these darn swollen legs and kneading to take antibiotics for the infections and then to get a pressure sore on my heel. So right now I never go out and play cards. I miss my friend I wanted to give her a new pack of cards so I did. but she was sleeping so we left it on the table I hope she knows it's from me I never could play Bingo I'm just not my usual bubbly self either I'm tired and fatigued I don't seem to get enough air ever I'm not struggling for air when I'm awake because I do move I guess I'm not breathing at night. the one thing that upset me was when I was in the hospital one of the neurologist from the pain clinic came over and told me that I shouldn't worry about the surgery to put the electrode in right now because I'm not healthy enough to get the surgery and they have to get me healthy enough to get that implant put in. no it's an outpatient procedure but there is incisions that open the spine and that's risky. so I can get to think about this anymore I just put it on the back burner
then I got a message left that I need to come pick up the shoes I ordered you see every year I get a pair of shoes that have diabetic orthotics in them and so I went and had a fitting and pick the shoes and he said my feet were so swollen that he wasn't sure that that was going to be a good fit and I said well this is the feet that I've got to work with I've got to order the shoes now time will go by and I've already waited for a couple months to do it so I just have to order the shoes right now so I ordered them but right now I wouldn't be able to get my foot in a shoe they're too swollen and all I do is wear socks so anyway I'm going to go pick up the shoes and I'll put them with the other shoes and pray every night that I'll be able to wear them someday.
So I can't believe that June is almost over I don't know where the months have gone I don't know where the time is called 6 months I have just disappeared and I can't even imagine what is going on I've missed six months of doing the things that I usually do I'm always in a wheelchair now and it's a horrible and then they yell at me because I get up out of the bed and I walk around and my legs laying down in the chair and I'm thinking I just want to sit in the chair. They need to get me a footstool right now I'm using a box with the pillow on it.
I'm waiting for the home to purchase a proper foot stool or a chair that has a reclining thing. Plus they took away the foam at that was around my bed. they said that they were cleaning it and that was in early May and it laid outside and it got rained on for over six weeks I've been saying you're not cleaning it you're leaving it in the rain why would you do that. So I hope that I get my phone at you know they don't worry about me falling I guess well I'm pretty good at not falling nevertheless I have nystagmus and double vision and I also slide off the bed and I also get the shakes sometimes the jerking and I really am a fall risk. because I haven't had a full lately is because I am very careful and I always ask for somebody to come in and help supervise me getting out of the bed and into the chair so if I do feel shaky there there and I think it helps me go slower and pay attention
SO with all of this dreary nudes I must say that I still call my friend did I grew up with constantly and we talked she supports me and we talked about when she gets retired and she's going to come out here and put her feet in the beach. she says I need to get ready to go on some road trips with her. she keeps my spirits up but I'm afraid I'm going to disappoint her because it seems like it's just one health problem follows the next and I'm not getting healthier I seem to be doing the opposite and I really feel horrible so I just rest a lot.
it is unimaginable to most normal human Minds I think about being in constant pain at the 8 and 9 of their ridiculous scale because no one not even a woman in labor is experiencing the most pain possible but I always say well according to the scale of the worst pain I've ever had this is between 7 and 9 because I actually get to the point of screaming that I need my pain medicine. and every time there's a new nurse I have to go over the protocol of how to manage my pain medicine it's like they say oh whoops sorry I didn't remember to wake you up whoops sorry
so all I can do is wash my hair in the sink in the bathroom and do a bed bath kind of thing in the bathroom because my two legs are wrapped up and must not ever get wet. The bandages are changed once a week. It's just like I have done this twice before but this time I don't have the infection they want to keep compression on so I don't get an infection. so sometimes I'm so happy just to have a nice washed hair and then I'll put a little makeup on just so I don't look so pale and washed out. before I would sit out in the sun not too much not getting a burner to tan just sent out just to get the vitamin D and just to get the sun on my face. So I opted to keep my nails polished this makes me happy to have pretty nails And I love to change the colors. But now I have a nail fungus again so I've had two keep them trimmed way down and also I've lost parts of the nails due to the fungus so part of them will have to grow back again and I'm just thinking please God notice me.
once again I have my days and nights mixed up and I'm just sitting here dictating this because I haven't made a posting in a long time. I kept thinking well maybe tomorrow I'll have a better mood or have better news but it seems that the status quo settling in.
thing that is most painful to me is when people talk about their outside lives things that they're doing and I realize I'm not doing anything. I literally do nothing except occupy space. So the lady that came to give me communion told me to pray about my purpose and what I can do here for others. and that has always been what I've tried to do since I'm here might as well. so it warms my heart when one of the CNAs came to me and ask me some advice and he said see that's why I came to talk to you. he even got pen and paper out and wrote some things down he said something that has been making my soul soar. He I said you always know something about it no matter what I ask you you always have a story and good advice. wow now my own children have never said that to me okay so maybe they have at some point in their lives when they were much younger I didn't know everything about everything. well all I did was just share my own life experience and give them some resources and this young man was wise enough to know good advice when he heard it! So anyway I was so happy that I was good for something that day. now there's this lady that pops in to visit with me and she usually wants to tell me the same story and say the same stuff and I listen and I try my best. anyway this young man who's been my CNA this past week keeps calling me Mom and I know he means well but it makes me want to cry because I miss my kids. so my son he text me and yet it's not the same I say I want a phone call but I never get one and of course he's endlessly busy and I know that but I also know that there comes a point where people withdraw and they don't keep up the pace anymore except for my really good friend who always sends me a box every month and it's really nice they have a token because it means I'm not forgotten.
I can't believe it it's already 3 a.m. and I'm noticing how hungry I am I guess because I skipped my lunch and I only had a little salad for dinner because I didn't like the dinner and I didn't have any snacks. I was supposed to stop at the pharmacy and pick up stuff and then I would have picked up some soup and supplies that I need but that didn't happen today oh I got to find out when my next appointment is and then try to go later. Okay well I have to stop now
. If you made it all the way to the end I thank you from the very bottom of my heart for listening and caring.
I haven’t contributed to the strokeboard in a loooonnnnggggg time, but OneHandCan.com is still here. I’ve been dealing with horrific, debilitating back pain for months and am now facing major back surgery sometime before year’s end. My days usually go something like this...bed...recliner...bed...kitchen...recliner...bed... yes, KITCHEN! That’s what’s keeping me going. I love to cook and, although I have to rest numerous times in the middle of cooking a meal, using my One Hand CanDo Cutting Board allows me to continue to do what I have always found pleasure in doing, cooking and eating good food. Can anyone relate?
Check out onehandcan.com and share your thoughts and experience with cooking post stroke.
It's funny how we never stop worrying about our kids, even though they have their own separate lives and have not lived under our roof in years. Our oldest son had his back problems and underwent surgery back in December, went through a painful rehab process and we worried that he would end up on disability as it took a long time for him to be able to even walk without a walker. He wasn't sure he would be able to go back to work again, especially since his employer at the time was moving out of state and he'd have to look for another job. It's not easy switching jobs once you turn 50 and have had health issues, but he lucked out and got a really good job. He's been training in Chicago and is now back home in Colorado while his wife is going through some serious health issues. She just underwent surgery on Friday after a routine colonoscopy revealed a malignant tumor. She's doing well after surgery but won't have results of latest biopsy till next week some time. If anyone can beat it, it would be her - - she's a tough cookie, but that doesn't mean we don't worry about her and our son. His new boss gave him the time off to be home with her through the surgery and some of the recovery, but I'm sure he'll have to head back to Chicago to finish his training. I'm feeling like I should be there to help out, but can't even make the trip to Colorado unless I have someone along to help with Gary - between a rock and hard place on that one! Our caregiver, Carmen was going to be away to CA for 3-4 weeks, and now it's going on more like 5 weeks and she's not coming back until around the 20th, which means I will have gone nearly six weeks without help...........ugh!!
I read our Sarahs reply on her latest blog. Vicious cycle she said. Perfect wording for our lives. I to, although have come so far - feel that vicious cycle . I get up go to work, go for lunch go get Dan from the nursing home. Usually have to fix something - his glasses , pick something up off floor or figure out who he is mad at and why. Its kinda routine thing for Dan to always want or need someone to jump. But I don't dwell on it like I used to.
Then we leave the home, go through Mc Donalds to get his daily meal ( the only thing he will eat). We then drive to the house so Dan can eat his meal while I run in and check on the cat and the house , pick up mail -- etc.
Then him and I go to my work - he goes and sits in the bathroom for like 1/2 hour . Comes out stamps the envelopes of the mailing my boss and I completed in the morning . Then he scans old legal files for about 3-4 hours. Then to the bathroom for another 1/2 hour ( the more I hurry him the slower he goes). Then we leave work. Then I'm faced with - nothing - nothing to do - of course there IS something to do , but we've done it all so many times before. Go out and eat, go see grandchild ( who incidentally usually is never home cause he is a busy boy)- lol. I could and do take Dan to the house... Unload wheel chair , walk him in - maneuver the steps -- try not to let the cat out , crap! there goes the cat-- lol
Back to the bathroom - out- watch TV ( right now when weather is nice , we sit on the patio ) then Dan wants to sweep the patio. Go get the broom , sweep up and dump the stuff Dan swept up.... Then we head over to Mc Donalds - Dan gets his meal and I take him back to the home...
At the home I wash up his torso, underarms , groin etc. lotion him .. Put clean shirt on him, then he sits in the bathroom for- I'm told- sometimes- hours. After the washup is done, I leave -- it's usually like 7pm then.
So sometimes I'll go have a martini and the only bar in town that can make one - or I'll go home and make my own. Then I graze from the fridge -- lol--- thankfully now with the weather being nice I'll sit out on the patio water the plants and watch the cat.. In the winter I just go to bed and watch TV.
Im not sure if Im content or complaining at the time I am writing this - lol---- I guess both. I like the fact we have established a livable routine for the most part. But the pure predictability of it all--- grrr and the waiting and always looking for the next thing that dan needs, a kleenex? another bathroom break-- oh pick that up ? it bugs you..... ??
So it is a vicious cycle ------- I guess its the responsibility of it all. Its hard -- I miss being able to just go- no thought of last time he has used the bathroom, what has he eaten, should I expect a mess? Fitting the chair in the car, remembering the cane--I have managed to overcome a lot , So I imagine this to shall pass-- lol .
Actually Dan has a new desire on the horizon ---- Gambling has raised its ugly head..... He wants to go to the casino ( 2 hours away ) a lot--- So Im trying to keep that little addiction from running and ruining our lives.... He has always liked slots a little , but right now - he would live there . Funny - the mans in a wheelchair , can't hardly talk but still gets his way-- But not always- He is playing with the" no eat card" - if I don't take him. HMMMMM we'll see how this plays out.
If no news was good news life would be so wonderful. I have paperwork in for both operations in two different Sydney hospitals now with a pre-admission interview on the 11th for the aneurysm clipping operation. I know you all know the importance of this operation as it will save me having a stroke, at least that is the way I am choosing to look at it. With a good surgeon and a lot of prayers it should be fine. I am not looking forward to it but I am no longer afraid of it.
We have just had the first really cold days for the start of winter, record snowfalls for May in some of our little towns near the Southern Alps. It is time to turn out the cupboards and find the winter woollies. I might need to get out scarves and gloves too if yesterday was anything to go by. I will probably need to look out bedsocks and shawls to wear during my convalescence. Not counting on anything at the moment as I will find out more details at the next couple of meetings. Anyway no harm in getting ready for whatever the future holds.
I am not as active since my last hospitalisation for the infection in my affected leg, it seems like my lymphoedema increased in my affected leg so that seems more log-like than before. I am also conscious that I walk differently now swinging my left leg more slowly than my right and I am doing shorter distances too. It is nuisance more than anything but does affect my confidence. I find stairs are a challenge too and I am mostly walking down them sideways with my back to the rails. A bit awkward but hey! I am still on my feet and that is the main thing.
Apart from that there is still a lot to enjoy in my life, morning tea or lunch out with various members of my widow friends groups, church meetings, craft, Lions and other activities. I like a variety of things to do and mostly enjoy some activity each day. I am more tired than I used to be, after 2.30pm I find myself wanting to head for home or find somewhere to sit with my legs propped up. This has been coming on slowly but I certainly know the difference that losing the lymph nodes made to my overall health and wellbeing. I have finally got rid of the chest infection, had it for almost four weeks. I am sleeping better now.
The short days means I try to fit gardening in after lunch. There is not a lot to do except keeping things tidy but with no rain for four weeks I have been watering a couple of hours each week. I had three different chrysanthemums flower just before Mother's Day which was a surprise. Shirley and family came down for Mother's Day lunch and and brought me another chrysanthemum which can be potted up once the flowering is over. I also have five different bromiliads in bloom so that was a beautiful surprise too. I have always enjoyed pottering in the garden. The herbs are finished though, I will renew them in Spring.
I am not sure how the next few months will go, Trev would love me to go out to Broken Hill to stay with him for a week as I usually do at this time, last year I was there for my birthday, but I can't go anywhere right now. I am glad Ray can't see me like this. I still "see" him here in my mind's eye. Funny how that happens for a long time after they have gone. Those 44 years were the major part of my life. Despite my efforts to live a full and satisfying life the loneliness is still a major factor. No way to overcome that.
So that is my whinge for today. Not exactly a pity party, just a blog about the uncertainty of my present life.
Just checking in-- life has a way ,even as it slowly ebbs by, to all the suddens have passed. When I think of it ( like anyone- ever doesn't think about stroke devastation) -I do check in and look at blogs of people who have mentored me through the task of caring for Dan. What a job it has been and continues to be. We do have a routine and still i have obstacles with him, but it is what it is. My rope is much shorter now. Ive had to learn - to not care as much-- to accept - his life and his desire to live or have a quality of life so to speak is not my responsibility. It about kills me sometimes, but I push through the BS I have been handed and low and behold Im still standing. This entry may seen almost cryptic to some but a few " old-timers " will get it.... NancyL
June 1, 2004 Gary suffered his brain stem stroke at the local hospital, while awaiting tests to find out why he passed out at home that morning. A nightmare of mistakes followed and he was transferred to a larger hospital in Denver where he spent the next three weeks in a drug induced coma to reduce swelling on the brain and further damage. I was told he had very little chance of survival, and if he did survive he would never work again, let alone walk or talk. It was recommended that he be placed in a nursing home, which would have surely ended his life and was not going to be an option for us after checking them out. He spent 3 months in a rehab hospital in Boulder, CO and when insurance was slow in processing claims and I was complaining about the lack of proper care, they released him to go home. A lot of ups, downs and in betweens over the past 15 years, but he's still here, hasn't spent a single night in a hospital since he came home the end of September 2004, and aside from still sleeping a lot, not being able to sit up by himself, transfer without assistance, feed, shower or dress himself, he has many good days.
I'm trying to decide whether I should have a small party to celebrate his 15 years of survival.......any comments, or suggestions would be appreciated.
I had five days in hospital and got home late Friday afternoon. It was so good to be home. I went to hospital because I got cellulitis in my melanoma affected leg. It was my own fault, I scratched an insect bite and set up a bacterial reaction. Without the protection of lymph nodes to fight off the infection spread and on Monday I realised I was in trouble. I consulted my doctor and then rang the Melanoma clinic and following their advice finished up in the local hospital. Needless to say that was the right solution as I needed intravenous antibiotics urgently.
Being in hospital again reminded me how fragile life is. I was in a four bed room and each lady had a story to tell, some sad, some of hard times, all linked to a series of health problems. With daily turnover I probably spoke to ten women in all. I am always astounded that we assume we are all so different from others until we are sick and then suddenly find we have much in common. I hate hospital, with its bad food, almost impossible sleeping conditions and insufficient staff but that was the place I needed to be to get well. I am so happy to be home though and it is great to sleep in my own bed again.
It was Mother's Day today. I did the usual picking up an older lady for church, then after I had dropped her off I came straight home. I am still not at full strength so didn't want to risk shopping today. About 1 pm Shirley and family arrived bringing chicken and salads for lunch. It was so good to be together again. They only stayed a few hours but it was great to catch upon the grandkids news and what Craig is doing in his job. Shirley visited me in hospital last Tuesday so I knew what she is doing. I loved having them but was tired when they left to go home.
A week spent mostly in bed has zapped my strength so now I need to build myself a routine with more walking and spend some time doing exercises on the Wii. Not allowed to do anything strenuous until all is back to normal, or what passes for normal these days. I am feeling my age now, sort of lost my bounce. I am not complaining, I am as well as I can be but I have to make an effort to get stronger before I have the next operation. And that is going to take an effort on my part.
The garden looks well after the rain and I need to trim a few of the smaller shrubs. It is good to be able to get out into the sun for a while now it is cooler. I really miss the long days of daylight saving, it seems that it is almost dark by 5pm now. The garden looks good as my lawn mowing man was here last week. It is just as well I have someone reliable to do it. It is better to think about the cost as just a normal budget item. And appreciate a job well done.
Apart from that we are in the middle of the lead up to our Federal elections, polling next weekend so all politics on TV and social media. I think I will read and watch old movies for the week. I can always find something to do. As soon as I feel strong enough I will return to my usual routine, weather permitting of course. Looking forward to that.
! I can't believe this April already! And I can't believe how long it's been since I've done a Blog. So much has happened all of your prayers have helped the miracle that has happened in my life. I was on antibiotics IV plus pills well the ivy was 10 days the pills was like a month and still I had fluid weeping out of my legs. Now I have a lymphedema condition they say and they said just elevate your legs and keep it on this diaper here so that all this fluid doesn't keep getting all over the bed and just stay here in the bed. Well that didn't work well for me because I'm a Nancy person and I like to pop up and look around and sit up straight and I just didn't believe that being in the bed for the rest of my life was going to help things. So then they sent me out to the hospital to have my legs looked at they said well you need to go to the wound clinic at the medical center and get a dressing on this. So I went back to my nursing home and they said well you don't have to go there we can get the wound doctor to come see you and the treatment nurse will come and do her thing. And the doctor is going to come see you. Well between those three fools I managed to have these cauliflower looking gross up and down my calves that were infected painful and all I could do is just sit in the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared enough I decided I'm in too much pain not to go do this so I went to the wound clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you see one of my legs is that crazy stroke-like with CPS and to have it bound up with tight elastic binding was more than I thought I would be able to bear and yet I did it and they did use a really soft cotton ecloud kind of bandaged. Was just fabulous and I would not have been able to do it without it but the people here said that I made them out to be a fool. Well if the shoe fits put it on. So the wound doctor came to see me the day before yesterday and I just laughed him out the door and I said no I don't want to see this doctor and he looks so shocked like you've been kicked in the knees and he said oh you don't want to see me and I said there's no need I'm Healed I'm all healed up and he's like oh oh well if you ever change your mind and I said you're still not listening to me I said I am cured. So anyway that fool went out the door. Now I understand why so many people have their legs amputated around here. I truly am grateful to the wound clinic and my big blister on my foot got healed my leg got healed and I'm in good shape right now in fact I'm wearing circaid juxta lights which are these really cool things instead of support stockings so that's supposed to help me comply with their wishes for me to stay compressed now this swelling seems to be going on and they asked me when did it start and I said and I started taking medication. infected painful and all I could do is just sitting the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared and of I decided I'm into much pain not to go do this so I went to the womb clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you're see what am I like instead crazy stroke leg with CPS and to have it bound up with tight elastic binding was more than I thought I would be. You wrapped it up with really fluffy bandage over a wound dressing and then compression wrap was put over that. I had to leave it on for a week. Showering was difficult and I needed assistance and I needed my legs wrapped up in big trash bags. Not the Glam Squad. But I was so grateful to feel hot water again. So then after that I was able to do what they told me and my wound healed up great on both legs and it's kind of pink red shiny right now and I'm not sure what it's going to look like when this gets finished but I don't care about scars at all I'm just grateful to have nice skin again. And at first it was a really dried up mess but guess what my treatment right now is. Right now I'm putting Selsun Blue on my legs for 10 minutes a day and after that a good coating of Aquaphor. And then this is under my circaid juxta Lite which are instead of support stockings. There is a velcro which means I can make them more comfortable. But since the idea is to keep me wearing something I think it's just more or less the idea that in the event of I can adjust them. So in 2 weeks I will be done with all of this watching me with the blue shampoo and I don't think I'll be using it on my hair because I just watched a YouTube thing about a girl that had the purple shampoo turned her blond hair blue. So I think I'm going to avoid having blue hair although I really think that she looked cute with blue hair. So anyway right now I am really thankful that I am up walking around on two legs however my strength has been is that from me. So I went to lymphedema Clinic and the specialist there said it doesn't appear that I have any vein problem and in her honest opinion it's just a bunch of swelling that got out of hand and because the water had nothing else to do and nowhere else to go it broke free by spilling out of the pores which just made a break in the skin and then by having me just resting my legs on a diaper it was actually pickling bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. 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I went to the lymphedema Clinic and the special is there said it doesn't appear that I have any vein problems but that I do probably have some circulation Problems and she wants to do a 3-day rapping to see if she can get that fluid to move out of my legs. She said that by letting my legs just sit on the diaper pickling in the juice that was coming out of my legs cause even more sores. Now she advised me to elevate but also to get up do exercising like leg pumps ankle pumps and walk around because she said that the inactivity and laying in bed was causing more swelling. I just wanted to throw my arms around your neck give her the biggest hug and I just felt like I told them so I told them so! I knew nothing good was going to come from my laying around and not get up. So I broke all the rules Which is a good thing or a might be in worse shape than I am. And I needed to see people. What it did to my mental state I can't even begin to describe now I have been on so much pain medicine that I sleep a lot but I swear I've lost a couple months I can't even remember what was I doing where did the months go I was just sick I was just dealing with my legs and look it's already April. But my legs have healed and I cannot begin do you express how grateful I am to the team that help cure me and so when these people here at the home come in and say oh you made us look like a fool I just don't have any patience why aren't they happy that I avoided maybe a bone infection that would lead to something worse. oh so I forgot to say that the week after I first went to the wound clinic the nurses came to me and said I needed to get another 10-day antibiotic through the IV. now I had stayed in bed those 10 days my legs up my arm out I was not going to deal with that again and I said I just had the infection cut out of my leg nobody mentioned anything about backup Antibiotics. Then they said I had this blah blah type of infection. So the next week when I went in because I was going in weekly to get my dressings changed because they frankly didn't trust the home to do it I asked them if I needed to get a 10 day I intravenous antibiotic because the culture showed blah blah. The doctor said so it's looking good it's Halen fine and it's going to be better than expected and it doesn't look like you need to have any more poison capital L capital O capital l. well those heavy-duty antibiotics are really good when they can save your limb but I think you meant that I wasn't a candidate for that anymore. so the world Clinic was very very good for me and the home here finally got me the stuff I needed like the soap in Aquaphor and Are helping me out. though there was one problem of course there always is the girl at the desk came around and was talking about how I should have not been seen because of insurance thing blah blah blah so then I called my insurance and they said oh no you should not have been involved in that that should have been behind the scenes I said okay all right. so then the next week I was there the girl at the reception was rather rude and so I thought okay she's just busy and then something came up and I had a question for one of the nurses so I called and I asked if I could get a message to the nurse and anyway long story short the woman was really short tempered with me now I know that I don't understand things the first time I'm told anyting. but then I got to thinking about it after I hung up and I thought wow this is not doing my soul very good to be feeling like I am right now and I need to tell somebody about this. my medical group has a thing called we listen and I called them and I vented. so then I got a phone call from the office manager at the wound clinic and she apologized said she thought it was just a misunderstanding. well I said I do miss understand plenty but the one thing I know I never misunderstand is politeness or the lack of. so anyway I said that I did not need the lady to call and clarify anything I just wanted somebody to notice what was going on in their office because if I didn't have to return their I would not and that's a shame because the medical team is excellent. so anyway I went back the next time and they tell me that it healed really great but that they weren't discharging me yet because the doctor wanted to make sure that the swelling was it going to happen again and they want me to use this air pump that I'll be wearing twice a day and push the button and it will be compressed let eggs. so after using that for two weeks I'll go back and see them again. But in the meantime I'm waiting for the insurance stuff to go through and for the medical supply to bring it to me and teach me how to use it. I'm grateful for all the new people I've met who have helped me and for those that I've taught me 2 also be gracious but assertive. Then
so now here it is springtime and if I feel like I hibernated through winter because of all this it seemed like one day I was running around with my shoes getting a blister because the stim trial worked out really well and then the next I was lying in the bed feet up hooked up to an IV. So much as going on and I feel like I can't even remember it all this medication makes me not remember but one thing that's been really awful is my roommate has been declining and she used to be so Lively but they put her on something for anxiety. she doesn't eat very much anymore she doesn't want to eat and her voice is like a whisper now she just keeps getting weaker and softer my best friend and I talk all the time and she said you've got to stop getting involved with people there at the home because they are so much older than you sicker than you and a lot of them are going to die before you. so one of the main problems right now is that I add to cancel my surgery and so that means that I'm not going to be getting the electrode put in and I'm not even going to be getting the spinal and so not going to be getting the RFA. The nurse wants me to call in and then probably go in to see the doctor. I said I need to get completely well and make sure that this is not going to start up again so I'm not going to be scheduling the surgery but I would like to get the spinal RFA. I feel like I'm a damn down that I have cancelled the surgery that they had brought this team together and he had sought out this great program that could really change my life and that I just am now really super worn out
disappointed what went on and I'm just not ready to schedule it I feel like I need a minute and my doctor also agreed that caution about infection I should be taken because I guess foreign bodies make good places for infection to go to. anyway I just need to get off of all of these medications that are making my mind in hibernation but on the other hand after all the pain and the ivies and all that I just feel like I need a break and I just thought to myself surgery surgery do you know what you're doing surgery! so my best friend says to me what's the matter with you you are all ready to do this you were all excited you know that this is the way to go why question now? well I have the answers to that first of all I don't like how I was treated when I was really in pain and I needed them and I'm questioning how well they're going to take care of me here then the next thing is I was thinking about what I went through and do I really want to do surgery am I prepared to go through that recovery and I guess it just all of a sudden when it was a couple days away I got cold feet first I was upset that I wasn't going to get to have the surgery and then the next thing you know I'm upset because I just needed to cancel it and and that was that so they just need to hurry up and reschedule and I've just got to get myself back in the groove so that's why the doctor wants me to come in for another consultation so the day that I went in to get my RFA the nurse does something about oh we're going to see you for the surger!
so I said yes then she says do you know how excited Dr so-and-so is to do this surgery and I said well I'm not doing it for him and the nurse says oh I know that and then she looked at me really strange and I realized that I had just blurted it out and it didn't come out sounding very nice not like it did when I was thinking it for the first 2 seconds but there it was and I was wondering why did I say it like that do I feel pressured do I feel like if I don't get this surgery I'm letting them down do I feel like I just need to get it scheduled and just get it done already looking forward to this I need to think about how wonderful it was to be walking around and not have the pain that I have everyday not have to take all this medication and all the positives the decision had been made in fact I would be getting the surgery in April but it's not going to happen now and I just need to concentrate on one thing at a time I get very overwhelmed. I know that this is not a good thing that I've had too much time to think about it and get cold feet it was better when I just went from doing the trial to scheduling the surgery it was fresh in my mind how much it helped and now I've had time to wonder about am I doing the right thing by having the surgery and maybe I don't need the surgery maybe something else I just want to not have it just want to have some way to get out of having surgery and I don't really believe that that's the best thing for me I believe I need to get Brave and get the appointment so and I know that doctor would never I want to be coercing me and that he would want me to do what I decided was the best thing and that I need to fully believe and be on board that it's the answer for me in a realistic way of course but based on the trial there's no reason to believe that it's not going to help a little bit and a little bit will that be worth what I'm going through with all the recovery time and I'm very very scared of that and you know I I guess I am just I know I'm not alone that I have my support group here and my family and my children and hello everything's going to be good but I just really got some cold feet and decided that I needed to take a break and maybe it was just because I was so sick and that I just felt like I needed some rest and maybe this is just what I need to do right now and maybe think about it in the summer I don't know how long I can put this off because I hurt a lot and I don't know if putting it off it's a good thing because I'm not able to really walk around but anyway are you going to try to get my health back in order and then I can think about what I'm going to do I'm probably going to get the surgery I just don't feel like there's and option I just can't see going on living with this daily pain like this it's like something must be done. anyway I just want to focus on celebrating..
I am home now and it is may now and I am still dealing with infections, and just have a black pressure sore on my foot now. It hurts. I EXERCISE by walking around but no p t right now. I never go out for appointments now but i am trying to get back to shape. I ordered new pink shoes. I want to wear shoes again. I a am ready to walk around and be healthy.
I color,watch netflix and visit with friends here. My life is sad though. My days are filled with prayer, as i try to be willing to livve as i am given my days but i seek better health and days.
I wish my roomie was given a better bed, better food, better time.
I am learning to sleep with a sleep apnea kit. I used the nose pillow thing but it shot air up my nose and choked me when i opened my mouth, then the one that went aroundd my nose was too tight. I like the one that lets me open my mouth and talk. Of course. I would not like ever being gagged.
I realize God has been very kind to me in general. I am blessed to have amazing husband & very smart kido though he is very independent & hates me if I try to get him to do something. All through out his life he has been go-getter, if he wants something, he will work very hard & get what he wants. he is good in studies, sports & playing out with friends, he is not organized, will wait till last minute, which drives me to wall & stress out. since his high-school years he wanted to get into medical field which he could have gotton right after his high school, which he had messed up due to his not being organized in 9th grade & getting his grades slide a bit. Anyhow that taught him lesson so he did pretty well in his college years & applied to multiple medical colleges. Recently we found out he got accepted in few medical colleges. We all are so happy & thrilled about it, though what I am more proud of it was that I had asked him to assemble some cabinet I had ordered online, & he was givig me runaround for few weeks, fianally he came & did it for me in few hours. I was so happy & told him we will give him assembley money he saved us, & what he told me made me proud mom, he was like mom you are insulting me by saying you will pay me assembly money, we are family & we do things for each other. I was so happy told him, you know it really does not matter to me as much that you got into top medical schools or not , but what you said matters to me most. yes we would have been unhappy upset had he not gotten in medical school, but being nice human being who loves his family matters to us more. So I feel I got my mothers day gift already.
The past few days have been tense. My Dad and my Stepmom hold secrets. During this time when we all feel so lost and vulnerable and want/need transparency. When my Dad was in the hospital (Vanderbilt) and was told for the 2nd time "You have cancer" we were all (including all the Specialist and Doctors) so happy to hear "It's not metastasized lung cancer... It is altogether a different cancer". That is HOPE. Just that knowledge. My sister was at the hospital a lot. Not me, I was sick with strep throat and strokey as I call it. It's an hour drive. I'm glad I didn't go... I didn't know I had strep throat when he went to the ER. Vanderbilt is the most specialized hospital we have in Nashville. It's a research hospital and a University hospital. Vanderbilt University is known for their Med program and Vanderbilt Hospital is state of the art. Daddy's Oncologist team came up with a protocol they felt would give my Dad the best chances. He could even go to Spring Hill and get his treatments. It is just 30 minutes away. He had said he wanted to go back to the local cancer center which is not affiliated with Vanderbilt. My sister was so upset...she got into an argument with my Dad and he promised her he would go through Vanderbilt. (BTW I didn't know any of this happened for quite some time after he had been home). Daddy lied to my sister that night to stop the argument intending on going to the place locally all along. Janice my stepmom held his lie secret. I'm oblivious... It came to my attention one day when a therapist came and mentioned the local facility. I stayed at my moms for a few days and I talked to her about Daddy going to the local place that I thought he was going to the Vanderbilt facility in Spring Hill. My mom said he is he promised Tammy (my sister) and at that moment I realized I knew the lie I just didn't know it was a lie until right then. I stopped talking. I talked then with my Dad and Stepmom and asked them some hard questions. They told me and told me to not say anything to Tammy. 😞 This scenario is horrible for me. So my dad had his 2nd round of chemo this week and it has hit him hard! Then today we had the main OT come back for a reevaluation because my dad fell day before yesterday. Janice woke me up at 5 am and said you need to come help me. I went to the bathroom and Daddy was on the floor and couldn't get up and Janice couldn't get him up. He was sitting in a large area of liquid (urine) and his feet were slipping. I grabbed towels and a non slip rug so he could get his feet steady and then together it took me and my Stepmom like 20 minutes to get him up. He is on constant oxygen and had not taken it to the restroom. So I ran quickly and got his portable oxygen machine. We got him back to bed using a walker and he layed down and went to sleep. 😐 Then last night he was in the bathroom again without his oxygen and his O2 was so low that he couldn't think straight. He was going to fall and my Stepmom called me to the restroom. I said hold him if you can and I ran and got his portable oxygen device again. He kept saying I don't need that oxygen..when I got back to the restroom we got him onto the toilet and my Stepmom told me he still had to go. I by that time realized I was standing in a pool of urine. I had to help get his undies down because he couldn't and Janice couldn't. (BTW I'm completely OK with having had to help my dad get down to his birthday suit. He is my dad and I would only choose to help him. I don't think he remembers or he would be really bothered by it. I'm glad he isn't upset). Today while the OT was there I sat in the same room. He told her yes he fell because he feels weak but his air (oxygen) has been fine. I am very aware that this is not true and my Stepmom just said nothing so I told her the truth. She explained to my dad that he has to use the walker and his oxygen right now for his own safety. He started to argue but I said "Daddy do you want me to put the really long tubing on your oxygen machine?". He said he didn't like it because he gets tangled up in it. So I suggested that he take his portable oxygen device with him to bed each night it was light and that way he could easily switch cannulas when he needed to use the restroom. He could hang it on the walker and no long tubing would get wound around his legs. He said yeah I can do that. My stepmom then said "Well I haven't ever seen you get wrapped up or tripped by the tubing". He told her he has he just hasn't told her. She was looking at me or sorta glaring at me. I felt like she was angry at me...even though Daddy agreed with my idea. She then said well ill take that other walker and put it in the bedroom. The walker she is speaking of had been hers during her hyperparathyroid issue and after removal of 3 parathyroid lobes. She fell with that walker and it was really bent up. I had fixed it at the time for her she did not want to get another. I told her Daddy didn't need to use that walker. She said well so and so gave me that other walker your dad's been using. I then said well let's order Daddy his own. I'm thinking... 2 walkers in great shape one for each room. His insurance will cover it he has not had one ordered for him yet. She argued with me that no so and so had already given him a walker. I then just said "That walker that had been bent does not need to be used period. Daddy will have to put all his weight on it at some moments and it wouldn't be safe". I also walked back to the bedroom with my stepmom and said we have to clear this whole path from your bedroom to the bathroom to his chair. It has to be safe not a trip hazard. His bed only has like 7-8 inches from his side to the shelf on his side and past that is his big oxygen machine and then all sorts of stuff on the floor. (Remember - hoarder/collector) and the hallway has stuff on both sides. As you go into the kitchen there are cabinets and shelves with hundreds of cookbooks and glassware. It's very narrow in that area. I think Daddy had to turn himself and the walker sideways. I made a comment about what I felt we needed to do. She was coming unglued...yelling everything is fine. Then she said "I'll move the furniture". I told her she was in no shape to move big furniture period that I would get with Tammy and we would come up with a plan. At that moment she just taunted me that she was too going to move it that she had moved a lot of furniture. I just said not this time Janice. I had to go run errands. I also had to go to my sister's office and talk with her about what was going on. (BTW I told my sister what the lie was and she had said something to my stepmom yesterday. I didn't even get my foot in the door before both my dad and stepmom bombarded me with questions. Tammy and I g ad agreed not to say anything about me telling her... I have to live there. She didn't tell them they just naturally assumed. I played dumb and after about 10 minutes my dad said OK I believe you. So yeah its been a rough week). I talked with my sister about everything. I know that home health will evaluate that he is in a safe environment and that includes his ability to be free of trip hazards. If they don't comply, the risk that my Dad can be removed from an unsafe environment and put in a nursing home is high. I have also been worried about when I move out which should be this month. Will my stepmom have the physical or mental capacity to handle a fall like the other morning? Will it trigger in her to call 911? Will she just be there running around thinking "I don't know what to do"? Then tonight after my dad went to bed I sat down to talk with Janice. It turned into something really negative. I can't write anymore, I'm exhausted. Plus I have written a book. to be continued...
Suffering is something I am good at. I ha ve constant pain, not chronic. I am always in pain. It is my life. I am able to color and watch movies and eat and do thngs that they determine are all signs that I am not having a 10 day.
I am in the hospital right now. I had to get myself to urgent care, then they sent me to the
ER and then IWAS put upstairs. cellulitis again in my legs, but this time my right heel has a bed sore. not a blister, this is agony, who will get me what I need while I am in the hospital.... well the nurse last nite let me sleep. Islept over 8 hours. I woke like a banshee and with twice the attitude of queen of them. I blamed them for all of it everything and then I got some meds in me and was fine. no one understands me.
I must return in a couple of days or lose my bed in the hom
I need to sleepn now and the nurse says she will wake me.
I am waiting for an MRI. I have a bed sore on my heel. I thought it was a blister, OMG ! I want to scream. I was going to get an electrode and now this. I never get rest.I want to be happy now, I need to go go home to rest but now this. I want to go home to rest but I
Must get an MRI b4 I can go, finish antibiotics and go home to the place I call home now, or be alone homeless. I want to cry, I feel alone. My son did not want to come to hospital to visit. No flowers, but my best friend told me a care package for mothers day awaits me in the the mail,so hey I am loved. One love is enough for me. I polished my nails yesterday, I feel better with red nails.
The pain management team member visited,told me I am on too much pain meds so that hurts me more, I need less meds to feel better, I nearly felt crazy, I said yes I want an electrode, but it took years to get this cocktail all day to be figured out. I cried, I mean it makes me feel nuts to cry in front of people, no reason but mad at mean people who confuse me, fail to listen, no compassion, of course I take a lot I fail to understand how can I take less when
I hurt so much more than in my dreams..I need cry to feel better then
What is my goal today they ask me as I lay writhing in pain screaming for help,a pill,a shot,relief
Be normal,walk,smile,be happy,be nicer,what goal,on what planet am I on,what time dimension am I from...am I in purgatory.....they ask me seriously..... l wish I knew the goal. Am I for real can anyone tell me in a nice voice that I am going to be ok and return to what I used to call nohrmal?
It is a nightmare to be alive in this pain,alone in pain,alone without love yet my son tells me I am loved but he is busy as children grow live a life apart,and I feel regrets for things because NO ONE IS HERE!
I know I lived a good life helping others yet here I am alone on an island, stroke took me away in a boat to a place where I cann of even talk right when I am sick,I cannot walk when I am sick,and then they look at me as if I am faking it, but the docs say stroke makes it this way,then it went away. I feel better and it is not easy to explain to people I was ill,stroke deficits returned, and now my shaking is done, I can see better now,and I am a better yet weaker me.
I am whole and again myself.
I was scared. I called neurologist,he looked over my case and called me saying I not need him, hooray. Then hospital antibiotics, I am o n day 6 now, time to go home or I will lose my bed. Am I this ill...
They don't know.
Please send me home.
Or I will not be allowed to return to my pretty room.
Yesterday my dad had his 2nd round of chemo (4 different kinds of chemo drugs). He was shaky and weak when he got home yesterday. At 5 this morning my stepmom wakes me up in a frenzy. Daddy had fallen in the restroom and she couldn't get him up and he didn't have the strength to help. Plus he went to the restroom without his oxygen so he was running out of air. It took us both 15 more minutes before we got him up on the shower stool my stepmom had grabbed out of the tub. He seemed OK, no broken bones, but a pretty nasty gash on his arm. We cleaned and bandaged him. I went and pulled out the walker he has yet to use but he did this time. He was in the bathroom so he basically fell and then peed all at the same time. Everything was wet, his clothes, the floor, the top of the potty and anything else nearby. My dad just there breathing in oxygen heavily (I brought him his Mobil oxygen machine)... All he kept saying was "I'm sorry". Which we quickly told him there was nothing at all to be sorry about. This is a harsh mix of poisons they are giving him every 3 weeks. It's hard to see my dad be affected so much. Please keep him in your prayers. He needs every prayer we can get. 🙏
I have worked so hard, waited so long, dreamed so much, needed so much and I feel the page turning. I have such an overwhelming feeling that the page is turning, the Chapter is ending and a new one is beginning. I am full of anticipation, gratitude, excitement and fear. For the first time really... This chapter is about me. I can't explain my feelings... I am closing my eyes and letting each one wash over me. I feel it coming. It's overwhelming. For some reason even though I have fear I am not afraid. I know this sounds a little out there...but I feel it. Thank you Lord. I can't express this enough. 🙏
I had a massive bilateral cerebellar infarct in the PICA region. Since July 5, 2015 a whirlwind of things happened and eventually after a very long evaluation from a Neuropsychogist... I was diagnosed with CCAS or Cerebellar Cognitive Affectice Syndrome. I still have deficits that are not considered as part of CCAS symptoms but this diagnosis (which may I add is extremely accurate according to what happens to me daily) has been quite the controversy. Something a stroke survivor never wants. My experience has led me to my wonderful Psychiatrist (I credit him for believing in me and researching on my behalf which over 2 and a half years has led to the best help I have had thus far). He is absolutely there for me and continues to work to find a better treatment. I thank him everytime I see him which is a lot (every other month). I also have Cognitive Behavior Therapy each week. I want to point anyone who is interested to the growing information about CCAS to the many articles which are growing quickly in number. Science and the Medical world have in the past thought the cerebellum was only responsible for a very specific job. One that did not include emotion at all. Newer research has proven that is not the case. The cerebellum contains more than 50% of all the neurons in the whole human brain. The "Little Brain" is doing a lot more than we realize. Thanks to research lead by Dr. JD Schmahmann and his colleagues there is new medical science being discovered about the human brain. All in all it is fascinating and for me it is miraculous. Here are the words I searched on Google:
Cerebellar Cognitive Affectice Syndrome bi-polar, schizophrenia, ADD, mental illness
If you are fascinated by the human brain, curious of medical discoveries, or like me and are all of those things plus (I had a cerebellar stroke) and I hold a passion for learning about others strokes as well... Heck the brain in general!!!... Then this will interest you. 🙂 OK I also want to share why I am cooky lol.
Well, this Sunday afternoon I fly to Florida to finally meet my grandson. It's so weird to say grandson. But I love that I'll be a Mimi. 🙂 This little guy has been through a terrible first month but he'll be two months this 18th.. I sadly won't be there for that but I'm eternally thankful for his grandparents opening their home to me. It'll be a good visit.. HOT.. yuck
My heart is all a-flutter as I write this. I have so much on my mind, so much happening... Life is moving right along. I come here first to share... You guys are family. I am practically giddy with anticipation. I also tell my local stroke support group but I only see them once a month. I tell my mom, my sister and friends I keep in touch with. Where to begin... My new runs the gamut. Very good to very not so good. I'll just begin... Good first!
First, Spring is coming! I am utterly thrilled!!! The trees are all turning green, flowers are popping up every where, it's getting warmer and warmer, the sun is brighter, I can wear flip flops! Perfect timing for finding my own place to live.
I have lived with my dad and step mom for 2 years now. I moved here almost a year and half after my stroke when I left my ex fiance and went back to my hometown. A lot has happened. The biggest thing is losing a big part of my independence. Basically, my bedroom is my place of solace. I can shut the door and just be in my own spot. I miss having my own place and all my things have been in storage. I have been fighting for SSDI since before I left Nashville. I guess it was a year after my stroke when I applied. It's been a long hard road and I have been basically dependent on others since then. My dad gave me a room to stay in, my sister gave me her 2nd car she didn't use to drive, my mom practically paid for everything I needed and treated me at times as well. She was always buying me clothes, shoes, things I liked or wanted. Of course not everything, but I am so overjoyed for everything she did buy. Mom also paid for medical things and all my meds (which is extensive), she bought my gas, paid for my haircuts, paid for everything Kitty needed, she was my advocate always and my biggest support. I have called her everyday multiple times a day. She has been the only person who can help me calm down during a panic attack. Well not only her... A few others as well. I know I must drive her crazy! She is a rock, she is my rock. I love her to the moon and back.
Not being able to work is a hard bite for me to chew. I've always worked. I did have the privilege of staying home with my daughter until she was 3 though. I enjoyed working and the freedoms that come with it. The struggle to accept this about me is real. Thankfully, I won my SSDI case 100% in December of 2018 and it has been a whirlwind since.
To begin, I finally had insurance. Having no insurance and not having the opportunity to get any after having a history of stroke is scary. There were many opportunities for a medical therapy I had to turn down. I desperately needed Cognitive Behavioral Therapy due to my many cognitive issues but haven't been able to until recently. My Neurologist told me all the time "Tracy you have to get into CBT... Possibly for a very long time." but what could I do. I was very blessed to qualify for my hospital's patient financial assistance program and all my Dr's are from there group. Psychologists are not a part of that group. They are private practice only and without insurance it is only pay cash before any therapy period. Now, I can see a Psychologist. It is already helping me a lot.
Because I fall under very poor 😒... I get what's called Extra help through Medicare. It automatically qualifies for me to have Medicaid as well. So I am considered duel eligible (Medi/Medi). This also affords me a very big discount for deductibles, office visits, what is called the Medicare donut hole, all my co-pays, and is extremely helpful with my Medicare Part D (Rx). I'm so so blessed. My generic meds cannot exceed 1.50 per Rx and my name brand cannot exceed 3:50 per Rx. By May I will reach catastrophic status and have 0 co-pay for meds, just 4.50/month for my plan. 😃 All I can say is I am blessed.
I am also waiting as patiently as I can for the announcement of "I have my own home to move into"! I've been talking to Kitty about it and telling her that soon it will be just me and her and she will have lots of new areas to explore. I mean all I can do is be patient. 🤪😳😬!!! It should be this week that I get to tour the place and fill out and turn in all my paperwork. Don't worry I WILL share the news!
So on the not so good side (but really not so bad) Daddy is still battling non Hodgkins Lymphoma. He told me yesterday that he is losing more hair than Kitty (which is a lot). I sat with him and told him I met many going through chemo when I had my job near Vanderbilt Hospital that lost their hair too but it grew back! 🙂 He's been doing pretty well and his OT said this morning his sight is getting better in his left eye where the mass had gone through the orbital bone and really affected his eye and all the things that connect the eye to our body. So that is great! He's a bit moody but who wouldn't be. My stepmom is really struggling emotionally. I sat down with her and said to be sure and make time for herself that being Daddy's caregiver is going to be really hard work and it's important she take care of herself. My message doesn't quite make it through to her... I understand why but I hope she remembers our talk when she needs it. Daddy looks to her for most things... He doesn't let me help a lot. I do what I can to help them both.
My anxiety has been really really high the past few weeks. 😳 Lots of panic attacks (no trigger) and a few times seeing or hearing things. This happens to me sometimes. I go to my Psychiatrist tomorrow and will fill him in. I think I've been swaying between being depressed and being excited. Just so much going on right now.
Thanks to those who made it to the end of the book lol. I know I write so much! If you ever have to tap out it's fully understood. Another release of "stuff" in my reality. I'm grateful for the blog. Hugs to all of you!!!
It is always hard to wave goodbye to Trevor and Alice. They live so far away and with all my medical woes I won't be going out to Broken Hill for a while. But we had a good week, no big dramas with Alice settling in. Not as much time together as usual as they went down to Sydney for two full days, one to Taronga Zoo and one to the Royal Easter Show where they met up with the cousins, Tori, Alex and Oliver. Alice is very close to Oliver who treats her as his little sister so she follows him around as much as she can.
We had a visit from Shirley, Chris and Naomi on Monday, Shirley said it was great as Alice really talked to her this time. We had lunch out and the day just flew by. Chris is doing Biomedical Science at University now. He wants to do research. When he was much younger after Ray had had yet another stroke he asked me: " Granma why can't the doctors fix Pa?" I told him that we don't know all there is to know about stroke and he said: "When I grow up I will find out." So maybe that is still in his subconscious mind.
No news on when I am having either operation. 2 - 3 months seems to be the normal waiting time for a hospital bed now. I am not worried as I am sure the surgery will be done eventually. I find that just going on with my regular routine is the best way for me to keep busy and not fuss. I got used to the one-day-at-a-time routine when I was a caregiver for Ray so it is not new to me. Unfortunately it does mean I can't do any forward planning but that is not new either.
The summer heat has gone now, we still have the occasional hot and humid day but they are not the average day. The days are quite pleasant now. I am in the middle of repotting plants and cleaning the gardens up for winter. I know that with either operation I won't be able to do heavy lifting so I will do as much as I can now. I am enjoying being outside more although now we are off daylight saving the days seem much shorter. I am always glad when the humidity drops, it makes life much more enjoyable for me.
I have been to a couple of funerals in the past month. It is because all of the groups I belong to have members much older than me. I don't think that is a bad thing as some of them have mentored me over the years. Some of them were my best supporters when I was looking after Ray. I have been in my Lions Club for twenty years in November so have watched the members I started with get older and frailer, but that is life isn't it? I guess the younger members think the same about me.
I guess some of you have noticed I am no longer Hostsue, I am now swilkinson. I am still officially the Blog Moderator and still occasionally comment on posts so I am still involved. I still have a lot of people from this site on my Facebook page so I am still interested in what is going on in the lives of the wonderful friends I have made here. And I still pray for those who ask for prayer. Thanks to all who do the same for me.
Been awhile since I blogged so here goes. I did my trip in August to see my longtime friend in Texas. He is doing well, still has some reading deficit but getting better. No other issues at this time. We had a great visit, he took me to the Ft Worth stockyards and I rode a long horn bull! From there I went to see some other friends in Louisiana for a few days and saw the WWII museum in New Orleans. I drove the trip alone, just me and my Mazda Miata with the top down most of the time and my favorite music going. Fortunately there was nobody along to listen to my singing.
Some sad news, another very longtime friend has some significant health issues. He is 11 years younger than I am but life has not been as kind to him as it has to me medically. I just made another friend by accident recently. He is the husband of the lady we hire to take care of mum when Lesley and I need to leave her alone for a 1/2 day or more. We really hit it off right away but unfortunately he also has major health issues and is 20 years younger than I am. I also recently looked up a couple I knew over 40 years ago while stationed in Italy. Very sad news there, he is a bit younger than I and just diagnosed with terminal cancer. Wow, so much bad news among guys I know about my age!
I am most thankful that my health is at the moment very good. Stroke survivor yes, colitis sufferer yes, but all in all very healthy and grateful for it. Seems like the past several months since I had a heart ablation and a pacemaker implanted and I have been able to start exercising again most days I really feel great. I can tell my body missed the exercise I missed during the heart surgeries and our Alaska trip.
i have a few other “guy” trips planned and will take another guy along if I can find a healthy one. There is a college baseball tournament in May I may go to, it has been on my bucket list for many years, and it looks like to me I should get on with doing whatever is on my list. In June Lesley, mum and I are going to Minnesota so I can get my fishing fix. On the way back we plan to take mum to the Auburn car museum in Indiana so she can relive the memories she has of her late husband Bill and her driving in the Auburn car they once had in New Zealand.
then in July me and my Miata are heading to the A.C. Gilbert Historical Society convention in Akron, Ohio. He invented Erector sets for young boys like me to build with and many other toys for young lads to enjoy. I hope to see a “tractor pull” while in Ohio, another “bucket list” item.
maybe a fall trip after that in the motorhome with all three of us and the two dogs to somewhere, maybe the Ozark’s of Arkansas and Missouri.
mum is now 96, 97 in September. She is hoping to get her 100 year old letter of congratulations from the Queen which members of the British Commonwealth get. Her health has greatly improved since our return from Alaska. At this point I think she may just get her letter. I wouldn’t bet against her. I can also say that the best two years of my life have been the last two since she has come to live with us. I would not say that about all mother-in-laws, but her, yes.
anyway, enough for now, life is very, very good here, even though we are unworthy.
time for tea.
P.S. I forgot to mentioned we had the privilege of hosting two disabled vets a few days ago for one night,that or part of a group of 10 such vets currently hiking the Appalachian Trail which runs over 2,000 miles from Georgia to Maine.
I can't believe April is here already. 🌷 Spring Fever has spun its' spell. Flowers are popping up to smile at the sun and trees are budding and flowering preparing to burst into life. I really like this time of year... It's a time of new and fresh... New beginnings and new adventures. The drab of winter is replaced over a few weeks with color, warmth, joyful beginnings, everyone is looking up to the sunshine even the flowers, inner hopes start to infuse many... A virtual treat for the senses. Most of us get a bite or two from the spring bug. Today, I ventured out and picked up a couple pairs of sandals for the coming warmer weather. Things are moving right along in my life. I was chosen to apply for THDA's voucher program to help with housing and guess what! I qualified! I have received my voucher to look for housing in my area that will WORK with THDA (Tennessee Housing Development Authority)... Basically section 8 help. I ran a little ad in our local buy, sale, trade so that I maybe could find something in my qualification range (which proved harder than I had expected). Guess what! A long time friend I have since 2nd grade reached out to me. He owns a real estate agency and he said he wanted to help me find a home. I was not expecting that and am over the moon thankful. Jimmy (my friend) has a duplex open that they are redoing. He said it would be about 3 weeks before I could see it they are gutting it and replacing everything. I have about 1 more week and I am sooooo excited. I have driven by several times in anticipation. Once I see it and want to try and get it he and I will fill out an intent to Rent from and the THDA comes and inspects it. Then using all the variables from rent to utilities to need to %'s of gross income they then will approve or disapprove... Many times if the values are close they will work with the THDA to gain approval. So I'm not holding my breath, I am allowing myself to get excited fully knowing that I do not know the outcome. I'm OK with that... I choose to believe that I can do this (fear of trying in my eyes is becoming more and more a path to failure... If I fall ill pick myself up, dust myself off, and try try again!!! I told God in a prayer that I am giving this to him. Trusting that no matter the outcome it will be right. I'm not scared or worried. I'll take it as it comes. Breathes in heavily, it's such a free feeling washing over me. I have started a list of things I want to do or have, how I want to do something, what kind of flowers I would love to gaze at, take care of. If not there then somewhere :). I will keep you posted on this new and exciting adventure... It's so fitting for the season!!! So question... What great advice can you share with me to make this adventure as exciting as it can be. It can be about anything
i.e. Flower choice, suggestions about what would be really enjoyed, a decor idea, a storage idea, a l've had a stroke and I have stroke brain idea, ANYTHING!! PRETTY PLEASE. 🤗🙏🤩🙋♀️👂🤞🏡🌷🏵️🌸🌻🌺
Recently I watched very inspiring talk given by girl who lost her leg in senseless robbery & train accident. It was quite amazing to hear her talk about ordeal she went through. after she was thrown off moving train for resisting her gold chain robbery & she fell on track & losing her leg in process. Anyhow after she got treated with prosthetic leg, being national volleyball athlete she decided she would climb mount Everest with her prosthetic leg. Think about courage she had. one line stuck with me you are handicapped because of your limiting thoughts & not by your physical ability. I was telling hubby about this girl's amazing journey & he said something very interesting lot of times in life we stop ourselves thinking OMG this is so hard and I can't do it, & when you push it through it & do it that's your mount Everest. I know in course of my day I go through many limiting thoughts, if I remember his line that this is my mount Everest, it will give me that courage strength to push past my fears.