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Looking For Support In My Area


goodnuff77
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So I've reached a point in my POTS based life where I think I could really benefit from reaching out to people that know exactly what I'm dealing with. For this I'll give a little background. I am a 37 year old married male from Maine USA. I have 2 children (ages 7 and 10). I first started becoming symptomatic in 2008 while working and running a small construction company. My illness came on out of nowhere's and became progressing quickly. In short time I had to close down my business and seemed my new job was traveling to multiple states for testing, treatment and diagnosis. I was quickly declared disabled and was unable to work due to overwhelming symptoms including syncope. By 2011 I was awarded SSDI benefits. I found dinets forum and began following and participating in the forums. Now I'm back feeling I need support. I was just hospitalized again due to complications with my POTS again and released yesterday. After another frustrating stay dealing with medical professionals that have no experience with my illness. So I left the hospital feeling the need to talk to people that understand what I'm going through. My family is great support for me and so is my new dr. But my illness destroyed my relationship with 99% of my friends. I'm not looking for a shoulder to cry on but people I can talk freely to that understand. So now a little about my condition. Once again I want to stress I'm male. I understand that most of us dealing with POTS are female and feel more comfortable talking to other females about this. Me personally don't mind talking to either sex. So Im not good with medical terms so my description of my symptoms will be in simple terms. Also I'm not trying to compete or exaggerate. I just want to list my condition to find people dealing with some of the same things. So I have a POTs diagnosis with low blood volume and low blood pressure. Suffer from migraines, digestive, problems, nerve pain in all my limbs. Due to the syncope have had many damaging falls (one being down stairs). Due to the falls I've had many concussions and been labeled with traumatic brain injury. So lots of problems that go along with that. Last week my dr put me in a wheelchair. I'm overly sensitive to meds so wasn't able to tolerate the normal prescribed meds to help. So I hade a total of 4 ports so I could do saline therapy.i received 3 liters daily. Due to multiple bouts of sepsis we had to do away with the port and now I use a g tube. For some reason I cant tolerate salt tabs but a can handle a slow drip of salt water through my tube.(still 3 liters broken up to 12 hours per day). Well that's probably a list of my major problems. The reason I'm try to reach out to you guys on the forum is my children are getting older and I'm able to do less with them and their still young enough they don't understand why. My wife is very supportive but it's hard for her watching me get worse as time goes by so she gets frustrated talking about my problems. Basically with the new wheelchair and recent hospital stay I'm having a really hard time. Its just so hard with all this going on and not having anyone that truly understands to talk to. Like I said before I'm not looking for a shoulder to cry on just people that can relate to talk to.

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Hi goodnuff,

I'm sorry you are struggling right now. I'm not afraid to talk to men, so I'm happy to offer some support. It will have to be on the forum or via our PM function because I'm not in your area.

I'm glad your wife is supportive but I understand it's not the same as sharing with someone who has experienced the same thing.

Feel free to send me a PM if you want to talk.

Katie

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I was always a better friend to guys, because there was less drama, so you can talk to me anytime. I'm old enough to be your mom, and I'm a retired RN, so if you have any questions feel free to ask. I'm sure it is difficult being the man of the family and having to be in a wheel chair, but remember it is for your safety.

You would be surprised how much a 7 and 10 year old may understand, if you give them a chance. You could start by telling them that even though you have fallen and pass out, and hurt yourself, that the wheelchair is for your safety, so you won't fall and hit your head, not that you can't walk. That may be scary, especially to a 7 year old. The 10 year old is thinking abstractly already, and is probably wondering if you may die, so you have to explain to them that as long as you are careful, that shouldn't happen. I'm looking at this from my pediatric nursing experience.

Your wife seems very empathetic, which is good, but you are right in that she has no idea what it is like to be in your condition or position, and that is truly what this forum should be, a sounding board for someone who understands completely what you are going through. The good thing is that she understands that you are sick and need help.

I'm sure it is safe to say that all of us on here have lost many friends, but those weren't the ones you wanted anyway!! My faith in God keeps me grounded, but I sometimes have very difficult days; I was an extremely active person before this, as most of us were before we became sick. Make sure you have some form of exercise, even if it's a struggle, because your calf muscles act as your second heart, so to speak to make your blood return to your heart. It's necessary. Stationery bike or even a recumbent bike to start. That will also help your mental well being, because you have natural endorphins in your body, hormones, that make you feel better psychologically, as well.

What medications have you tried? My meds have been a life saver for me!! I'm on a med that holds in fluid and it helps tremendously. I gained 5 pounds of fluid in a day. That's how dehydrated I was at the time. I only weighed 100 pounds. What about meds for tachycardia or your blood pressure? Most of us are on some sort of antidepressant, too. You can PM me, as well. Since I'm a nurse, I've never completely fainted, but know when to sit or lay down, too! My blood pressure seems to compensate in the other direction, which isn't good either.

There are many knowledgeable and compassionate people here; you just have to find them. Katybug is one of them!! :)

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You are welcome to PM me anytime. We have some things in common.

This can be an isolating condition, so your feelings are not unusual. I have made a couple friends here, and that has been as helpful to me as any other thing.

I can relate with your concern for your children. That is probably the most difficult thing for me.

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Hi Goodnuff77. I am glad you reached out for support. I do not have children (just a rather large dog) but I do know that many of the members also struggle with trying to spend time with their children and taking care of themselves at the same time. I can only imagine the difficulty.

I do understand how doctors appts. Seem to take the place of your job as I am also on disability right now. Trying to build a team of medical professionals that you trust and you feel have your best interest in mind seems to be a struggle due to the still "newness" of the diagnosis (relatively new I mean). The information is getting out there but I found my "team" through the Cleveland clinic.

I hope you do take GJenson and Katie's suggestions up on Pm ing. They are awesome!

I am glad you are back on the forum. It has really been a lifesaver for me.

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I'm only 19 but I am male. It is extremely hard to find anyone that understands is what I've found. I feel like my friendships are starting to dwindle because they don't understand what I am capabale of and what I am not. I usually don't even bother to try and explain because it makes me feel sad that I can't do things that they want me to do.

And of course, my future, you have a wife and kids but I don't know if I'll ever have a family to even support or be able to support. It's scary thinking you might have to live near mom and pops for the rest of their life.

Feel free to PM me if you want, I could probably use someone to talk to as well.

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