Just a short lil video from the trip. Nothing was recorded in the hospital as I wanted to respect the privacy of the people in it.
We all know how much POTs sucks. In March I had an internal heart monitor put in. I posted about it in a a previous blog entry. Well it did its thing and showed that my heart stops a few times. It was then recommended that I try this med that must be given to me via injections. I hate needles. I hate meds that require 2 to 3 times a day injections. I manage to give MYSELF injections but the pain was just too much. The med was called octreotide.
Dr. Grubb was consulted right away about the pain and since we had little hope that I meds would help me anyways (I had gastric bypass surgery) we proceeded to go with a pacemaker. I had said pacemaker put in on Tuesday. I was sent home yesterday. Words can’t explain the thoughts going through my mind right now. I’m just praying that it helps. I’m praying that someone else reads this blog and it helps them.
This is now apart of me. http://www.eplabdigest.com/BIOTRONIK-Launches-Evia-Pacemaker-Series
I’ll post more later.
Yeah it has been a while since I posted. I know. Sadly this past week we lost my husband’s grandmother. This loss has made me do a lot of thinking and how I really need to at least get an updated will and make decisions on how I want my body to be treated after I’m gone. Ok sorry to be depressing there for a moment.
Let’s move onto something better.. I have an appt with Dr. Grubb tomorrow. Apparently that 12000 dollar piece of equipment they put in has been sending data that he’s not happy with. So I have an appt to see exactly what that is. I’ll let you know when I know more. Sadly due to the fact that my husband has been off for so long we won’t be staying in Toledo too long. I really need a vacation. Hey Disney! Want to send a family of 4 to your resort for free? ;) Great PR. Mom has chronic illness. You’d look like a saint! lol
Speaking of my children. They are my world. However, they are on summer vacation. It makes me miss “me” time. Sure call me a bad mom but sometimes mom needs some peace and quiet. Sadly while I was in the hospital a couple weeks ago I missed them so much that I convinced my doctor to let me go home so I could hear their wildness.
I’m very proud of Hunter. Today marks his last baseball game. He’s stuck through it all season and this is his first season of playing baseball. I’ve seen a big improvement. Enough that I know with lots of help he’ll be pretty good in the next year or two. Plus during his last day of school he was the ONLY kid in 4th grade to receive special certificates for his achievements. His teacher told me she’s never seen a kid with so many goals and stick to each of them. He is really gifted. I wish we had an actual “gifted” school nearby but I’m thankful that Northwest has a gifted class for him.
And onto my other sweetie. Ian had a lot of problems reading at the beginning of his year. This kid now picks up books and reads almost anything. He reads words I had no clue he could. He’s also not hard to get to read. His brother hates to read. Plus he’s still enjoying cub scouts and just got signed up for tag football. I think he’ll do great!
So that’s all I’m going to post for now. I am going to start posting more. If anything about my craft projects in between the important stuff. Crafts seriously save my sanity. :)
Until next time, Krista
I’m always saying how with having a chronic illness, like POTS, EDS, or any other ones that might exist, just how important it is to have hobbies to help keep your mind off of it.
I started getting back into scrapbooking. Only thing that sucks is that I’ve had to buy all brand new stuff because I had pretty much cleared out my stash. So I’m slowly rebuilding. I wanted to post some of the things I’ve worked on lately.
These two pictures are of a tag that I recently made to send to a friend.
This is a mini scrapbook that I made for my mother on Mother’s day. The first one is just the card that went with it. :)
And this last picture is another tag that I made for another friend.
Feel free to leave comments or email me anytime!
Thanks for stopping by,
It seems like just yesterday I was getting my internal heart monitor put in. Its still there. I don’t know if it has picked up anything but I do know it sends lots of information based upon the time it takes to transmit. So we shall see.
This month has been a month of very little energy. I filed for disability and I still have to get them some paperwork before they can process it. I do expect to be denied. I do expect to get a lawyer. I do expect that I WILL NOT give up until I get it. I simply can’t work. I can’t even last an hour out of bed most of the time. Its hard for me to accept but it is what it is.
About a week ago I did manage to pull myself outside to take some pictures of the sunset. I hope you enjoy them.
Oh yeah I forgot! I got to deal with my first bought of low blood sugar post gastric by-pass surgery. I hate this!
Or so I try anyhow. I decided to make some silk lollipop flowers last night. Here is how it turned out:
Not bad for a first try.
This is how I keep myself from thinking about all the challenges that I have. It’s my sanity.
So what do YOU do?
One of the many things that comes with dysautonomia is the incredible unpredictability of how it affects you daily. It’s often hard to get out of bed yet to even consider holding a full time job. Nothing more can make you feel useless or like a failure than not being able to do what “normal” humans do everyday.
I’d love to consider going back to school to get my degree in photography but that is seriously impossible. Sitting and standing makes my heart beat like I’m running a marathon. This causes exhaustion beyond belief. Plus driving 30 minutes to school everyday would wear me out alone. Oh and there is that little bit that also stops me called money!
So what does one do with POTS? Here are some suggestions to help you get through the day!
In the end it’s all about finding a way to make you feel like you can still do something yet in a way that your body can handle it. Sure POTS can go into a remission like state but who knows when that will be and if it will happen to you. Finding purpose helps you stay sane and relaxed.
During the day I am home alone. My kids are at school and my husband is trying to maintain his job. I am very much not alone.
For this is Purrl. My white cat with half blue and half normal cat eye colors. No she’s not a kitten. She’s almost two. No clue about the eyes but she is unique beyond those eyes.
For she has redlight eyes. No not really.
She does like to grab her butt while she cleans herself. It makes me laugh. It is the simple things in life…
I still remember the day that my husband asked me to be his wife. I still remember walking down the aisle as we eloped without our friends and family knowing. I still remember my vows and those words, “in sickness and in health.” Being twenty and some odd years you never think of the sickness part of your vows. You never wonder if your mate will be able to stay by your side as well.
When I started having syncope(fainting) episodes we pretty much thought it was nothing. Off and on through my life I had these but not as bad as it was becoming. So much that last year I spent my youngest son’s birthday in the hospital. I never in my life had I imagined that I could end up with something so chronic that it could change my world as much as this has.
So how does POTS/Dysautonomia affect a marriage? In more ways than I care to admit to but will try to for educational reasons. There has been a huge strain on our marriage. I can’t work at all. We all know the saying that money makes the world go ‘round. I can honestly say money makes my world turn upside down. My husband works a full-time job and 2 part-time jobs. I feel very guilty for not holding up my end of the deal. For not being able to work and most of all I also feel terrible because I can’t always keep up with the housework as well.
There are days, well a lot of days, where getting out of bed to go sit on the toilet is even hard to do. With the huge number of appointments that I have and the syncope episodes this has also caused a big strain on my husband’s full-time job. Bosses don’t always understand nor do they care. They have a bottom line and that’s really all that matters. This is one of those moments when I wished I lived in a country that would pay for family medical leave. My doctor has offered to write my husband off for family medical leave but our bank account is just not padded enough to allow this.
With the daily issues of having enough energy just to get out of bed has also come with the inability for me to clean my house on a daily basis as required sometimes when you have children. I’ve always wanted to be the one to help take care and have a 50/50 household. This is no longer possible.
POTs has a way of changing your world and those around you. It has a way of making you sometimes doubt if you’d be better off in a nursing home during those bad days. So when I say it’s changed my marriage a big way, I’m not even touching the surface.
Do you know someone with a chronic illness that has changed their quality of living? Visit them so they know that they are not alone. Play with their children so the impact can be just a little bit easier for them. Push for the government to make it so that medical leave is a paid benefit. And lastly I ask that your pray for the marriage that has a huge strain on it. They need it.
24 And let us consider one another in order to stir up love and good works, 25 not forsaking the assembling of ourselves together, as is the manner of some, but exhorting one another, and so much the more as you see the Day approaching.
Hebrews 10:24-25 (New King James Version)
Last week my husband and I packed off and headed north. We were on our way to visit one of the highest regarded doctors when it comes to POTS/Dysautonomia. As we drove our way through the snow I was starting to wonder if this was a bad idea. Why not just turn around? We had every reason to. We were experiencing white-out conditions along our way to Toledo. NO way was I going to cancel!
Most people who have POTS have heard of Dr. Grubb in some form or another. Most have read his name in the studies and websites with information about this annoying syndrome. Some have even read his name on forums that have other members who had appts with him. The one thing that these people all know is how hard it is to get into this doctor. I was told 6 months to a year wait(could possibly be longer). I consider myself lucky in this aspect. I was able to meet his assistant within 3 months and had an appointment with him just a month later. That appointment would be rescheduled due to me not doing well.
I will tell you the thing that bothered me at first about this appointment was the time I had to wait in the lobby before I saw him. I’ll be honest and say it was two hours. I will also tell you I’d do it again in a heartbeat. Dr. Grubb is not like any doctor you’ll ever meet. He doesn’t let time have any say in the care he gives you. I think if I needed 12 hrs of his time that he would’ve gave it to me. The care and attention I was given was greatly appreciated. He talks to you honestly and in a caring way. He makes you feel like a friend and not just a patient. He even shared things with me about his personal life that I have never experienced with another doctor.
During this appointment I mentioned to him about the blackout periods that I’ve had where I’ve been out for hours at a time. This obviously concerned him as much as it did me. It was then decided that we should implant a loop recorder under my skin to see if my heart flat lines during this time. He has had numerous patients with this problem. I was also giving a prescription to try another medication that I’ve been on once before but this time at a different dose.
We also discussed how my gastric bypass surgery is causing most of the medications I take to not even be absorbed. We talked about how copper deficiencies have been known to cause seizures in gastric bypass patients as well. Not to mention the huge increase amount of gastric bypass patients he now sees. This surgery has been known to cause POTS. While I’ve had it all my life the surgery did cause stress on my body and has thrown it back out of the “remission” of dysautonomia.
Upon the end of my visit I was told that the hospital would contact my insurance first to make sure they would cover it since they are an university hospital. Once this was done they’d let me know when my surgery is. My surgery is now scheduled for the end of this month. Also the doctor was very kind and mailed me a book called: “When Bad things Happen to Good People.” He also sent me a lot of information about my condition and other works that will be of use to me. I am very pleased with the care that I have received from Dr. Grubb and his staff. He really is a special doctor and the wait to get into him is very worth it. I look forward to seeing how this testing turns out in the end.
I realize that I said I would get this done a couple weeks ago but between snow days and POTs being very active it’s been a bit hard. These are just my symptoms and I want to advise that I am not a doctor nor can I give you medical advice. However, if you are noticing that you are having these as well then I would recommend writing a list and taking it to your doctor. If they just shrug it off then you need to find another doctor.
My symptoms are:
Again these are just some of mine. I’m sure there are more that I just can’t think of right now. See I do have cognitive impairment! ;) Again, self diagnosis doesn’t help you any. If you suspect you might have POTS/Dysautonomia then please see a doctor. Find one that will listen to you and is open to the suggestion of what you feel might be wrong.
So what type of symptoms do you have? Feel free to share in the comments or email me at bangingpots @ gmail.com