So I recently wrote about being told I need a permanent port ASAP but it’s not my only new accessorie …saw my cardicardiologists yesterday to follow up for my cardiac testing from last week. … some results were good and some were abnormal. . My pulse is very faint and my blood pressure has been going as low as 96/44…I’m a small person so I usaly run low but it’s been ridiculous! I had worn a 24th heart monitor that showed 5 extra (ectopic)heart beats which isn’t much but I’ve been on a beta blocker for at least 7 week’s for very aggressive palpitations soooooo now I’ll have to wear a 30day monitor and no beta blocker!it’s gonna suck…my palpitations are nuts, l literally feel like I’m being electrocuted but my cardiologists wants to get the proper diagnosis for me…The fun never ends with lupus lol. …good news, my first wheelchair will be here tomorrow Yaaaaay! my hips and pelvis have degenerated so much since May(they were fine before that)so my cane is supportive enough anymore. I never imagined I would be so sick and now physically disabled at 33 years old. .I’m hopefully my new wheelchair will help give me back some quality of life, I’m staying positive:)
Thinking of you & wishing only the best for you. It is far too much at your age isn't it? Good on you for just getting on with it all though.
Kaz xo
I am so sorry you are going through this. I haven’t had heart problems (thank The Lord) but I used to have to use a cane and crutches. Have you tried any dietary changes? When I stopped eating dairy and significantly reduced my wheat and sugar, I was able to walk without assistance. I still have pain but it is bearable. I’m wondering if I cut out a few more things if my symptoms would improve. (?)
I wish you the very best. I'm sorry lupus is taking such a toll on you. Gentle hugs!
I'm so sorry for what you're dealing with. I sure understand your situation. I have a lot of what you have except the port. I had low blood pressure and palpitations, and dangerously high heart rate too. I did the 24 hour Holter monitor and they talked to me about the 30 day one, so I asked what the possible outcomes could be, and what would be the possible treatments. He said I would probably end up on beta blockers after all that, so I passed on it. I've gotten to the point that I'm not willing to suffer just so a Dr. can write down a diagnosis that gives me the same or no treatment. I hope your cardiologist is smarter and has more options for treatments to the possible outcomes. In Canada they don't seem to have the same level of care as in the USA. They do the cheapest thing possible. Later my family Dr. discovered that my lupus attacking my thyroid had suddenly changed it from hyPOthyroid to hyPERthyroid, so I was taken off thyroid medicine and slowly the palpitations and crazy fast heart rate is slowing down to normal. Might take a year. Like you, my cane isn't enough anymore. I had to get a rollator walker with a seat that I sit on every 10 steps or so. I was provided with a scooter, but I don't have a vehicle to put it in when I go places, and no one to push me in the wheelchair they gave me, so I rarely go out. So I can associate with what you're dealing with, but I'm sure sorry about the permanent port and all the rest. Keep smiling as much as possible..
I also really love your attitude! Keep being positive and it will not only help you, but be an encouragement to others. (But don't be afraid to also vent or do whatever you need to when you need support. We are here for you.) Hoping that you have more good days then bad and more joy than pain.
Enjoy your new "ride"!
I'm so sorry. I hope the wheelchair helps you. Just want you to know you are heard.
Its amazing how much a positive attitude helps! my doctor told me if I was any older and didnt have such a positive out look I would be in the hospital. I still have my bad days but I just remind myself of what I still have. I also have a wheel chair and it has been a great help, it is allowing me to still do things with my friends and even go to school. Wish you the best of luck! :)
please look up P.O.T.S syndrome (postural orthostatic tachycardia syndrome) I have it, and it can happen in autoimmune disorders.
I am glad you are staying positive that is the best way to be. Your cardiologist seems to be very caring enjoy your new wheelchair
Thanks everyone for bebeing supportive and awesome as usual!! glad to know I have you all in my life xoxoxo
I am so sorry you are dealing with this. I am 33 years old too. I am also dealing with mobility issues and heart problems. Good luck with your wheelchair. I hope it can give you more of a quality of life. I am a person who loves to talk walks around our property, but I haven't been able to do that in a long time. I can sympathize with no much quality at times, like many Lupies do. Keep us all informed on how you make out on the testing and the wheelchair.
Creekbank