So I am having all my follow up appointments the next few days with neurology, nephrology and rhemuatology. I have been experiencing weird smells followed by "black outs" they did one EEG and it showed a dysrthymia in the front left lob of the brain. They put me on seizure medications to avoid a major one from happening. It seemed to have worked at first but then I had friends commenting on the fact that I was "gone" and would just stop talking and it was like I was in my own little world. I had no Idea I was doing it. So they set up another EEG this trip, and it came back normal. My neurologist freaked out when he saw me in the wheel chair and asked why I was in it. Didn't even get a chance to explain I don't use it all the time its just for long distances since I get so worn out and have difficulties breathing. He also freaked out and asked why Im I walking so slow? I was like because I get tired and short of breath... And so now he is wondering if all the pain and everything that is going on I just need a little "physical" exercise to get going and get well. And that hes not sure how much is the lupus and how much I need some "help". SO UPSET!!!!!!!!!! So he at least is going to talk to my rhem. to see how much is the lupus and how much its "something" else. I am set to see an epilepsy specialist to decided if they want to do a hospital stay EEG and take me off the seizure medications and monitor me that way..... I am just so upset. I was told before by neurologists that its all in my head and sent me home very sick and so its just bringing all the frustration up again. I am thankful though that my other docs. dont play into that and know that I am very sick. I do what I can when I can, some days are better then others. I only use the wheel chair when I have to go shopping. school, lots of walking (appointments) or if I want to save my energy so I can enjoy doing something else later. If I am having a good day I will help around the house or go do things with friends etc.... But even on my good days if I do to much it lays me up for days. I went and had some fun with friends and for four days after that all I did was sleep. Its not like I am a lazy bum sitting around waiting for people to do for me. Like my mom said does he see all the puffy extra weight thats been put on by the steroids and thinking I am just sitting around doing nothing???
I sat in the car and just let it all out, and told my mom. I am 20 years old do you think I want this stupid wheel chair? Be put on disability and have to have assistance because I cant care for my self?? I cant do "normal" things like my friends, I have had to put school on hold. I have only spent the second have of my freshman year of college and this whole summer in and out of the hospital, doctor appointments and treatments. I am getting to the age where I could get married, and I think who will want to marry someone who cant always take care of themselves. And what if he wants a big family and I can only have 1 or 2 children because that's all I would be able to handle??? My mom is taking care of my bills and hers, this has put us in the hole. I wake up everyday wishing and dreaming I could help and go back to work and be normal..... Some days it just hits hard and really hard but I am just doing what I can when I can. Hoping to get some answers from my rhem. today on what they want to do. They were going to start me on cell cept and up the steroids. So not sure what he plans to do now, as they put me on high dose iv steroids and all it did was cause my sugar levels to rise.
Sorry for the long post, it feels so good to get all the frustration out. Thanks for listening!
A lot to deal with but one thing to take away from all this is that here is much you can do to self help Your illness will not go away but maybe you can make it more bearable. If you are having such difficulty in walking it is important that you work to increase your exercise tolerance. The more you give in the weaker your muscles become and then it is harder to walk A vicious cycle Hopefully your rheumie can help you Have you looked into water therapy- a great way to build up your muscle strength and also lose some of the weight that seems to be dragging you down as well. No cures here but you can control some of the ravages of this illness.
thanks for info! we live in a very Small town it does have a local pool but very limited hours and with my moms work schedule i dont get to go to often. thankfully i got physical therapy in the hospital and they gave me things to do at home. i also see a chripractor and after that i have a little more “movement” and can get around a little better. it is a very vicious cycle! i am just thankful i am better then i was when i first got sick. i could barely walk at all and my right side was completly numb. i had to have help to do most everything it was even difficult to feed myself…
Louters, I'm so sad you are having to struggle so much, and I know that being young and wanting to do and be just like everyone else comes to mind a lot. You have one or more illnesses here to deal with, and need positive people around you who will help when it's truly needed, and stand back and let you do what you are able, when you are able.
I would suggest the following questions be addressed with your care team lead doctor:
- what help is there for me to strengthen myself? Is occupational therapy (helps you learn to use tools and skills so you can be as independent as possible) and good quality physical therapy advisable now, or does the seizure issue need to be resolved first?
- Could any medications I am on be having side effects that are helping other difficulties to develop?
- Can I be referred to a nutritionist who is familiar with autoimmune diseases?(better nutrition usually equals better health. also will help with realistic weight goals)
- I have desires of finishing school and hopes for a family. How can I be helped to get to a better state of wellness and ability so these are realistic for me?
I so understand your frustrations, fears, and getting tired of so much of your life being tied up as I am sick, rather than getting on with the business of living. I know you can get through this, and talking to people here, who don't judge you, who really understand, will help you to feel more empowered as time goes by. You have medical issues, but you are not them in sum total. I hope that makes sense.
Big hugs, and please keep us updated. Everyone here will help. We are friends, but even more so like family.
I'm sorry you're going through all of this. I do agree with Poobie about water therapy and the vicious cycle we can get into with movement. Sometimes I do some water therapy in a nice hot bubble bath. :) It helps me relax and loosen up my muscles so I can stretch, or soak after exercise so that I'm not as sore the next day.
Definitely get to the bottom of what is going on neurologically. Sounds like you could be having focal seizures in which you are "gone" or stare into space without knowing it, and can even black out. Sometimes smelling weird things can be a sign that a seizure is coming. Document activities that you are doing before and after these events occur and what happens during the event, as it can help doctors pinpoint any triggers and what exactly you may be suffering from. Sorry.. just finished reading a chapter on seizures and neurological problems.
It is not in your head, and when doctors tell you that, go find another one who will actually listen to you. We know and understand our own bodies the best.
I definitely understand your frustrations and worries, I have many of the same ones, being young too. Just know you're not alone and we're all here for you.
Thank you all so much!!!! I really appreciate all tips and encouraging words! :) I have a great support system from my mom which helps a LOT! My rhem. is going to run some more lupus tests including (i think I am getting this right) tests to check blood clotting issue that could be part of the brain/seizure issues. He hadnt run those before so I am anxious to see what comes out of those.They seem to not be 100% sure its lupus but he told me today that he is really leaning hard towards lupus and that's probably it. He did also bring up the fact that I am probably also dealing with fibromyalgia so they might set up an appointment to see pain management sometime to help with that. I am just glad he didn't judge and say its all in my head, it made the rest of the day better. He also completely understood the "lupus" fatigue and explained it really well to me and my mom as well as how/what fibromyalgia is. He also slightly mentioned cellcept and the fact of lowering my prednizone as I have been on 20mg for almost 3months now and he is starting to see the affects of it on my body. Hoping to hear tomorrow or Friday about the lab results and what they want to do next.
I believe you and I have a question. 30 years ago, I was suffering the same fatigue and shortness of breath that I am experiencing now. Back then, they did a ultrasound of my heart and found I had mitral valve prolapse it was leaking blood back the other way. I would get so winded and tired I couldn't do hardly anything. After meds for prolapse, I got much better. Have you had your heart checked?
Definitely look into water Zumba or other exercises. I am 32, trying to keep active with SLE and fibromyalgia it is really hard. Best thing for me is water exercise since its easier on the joints.
Thank you!! ill for sure look into it and See what are pool offers. Feeling encourged now after seeing the nephrologist and rheumatologist. my kidneys are doing well according to my labs. there plan is to slowly take me off of prednizone while i start cellcept. anxious to see what happens ready to be somewhat normal again! still confused about the chest pain/shortness of breath. One CT Scan said my heart was slightly enlarged, and the nephrologist and his side worker both heard a few skipped beats. and according to my first ecg there was a slight abnormality not sure what it was so they did another ecg. waiting to hear back from them but they are still waiting on a few labs.
Definitely look into water Zumba or other exercises. I am 32, trying to keep active with SLE and fibromyalgia it is really hard. Best thing for me is water exercise since its easier on the joints.
Lupus can affect brain function (trust me on this) and many of us are on anti-seizure meds. Sometimes when you "aren't there" it could be because you are having a small seizure. I am not a doctor and it is certainly something to be followed up on, but the brain is an organ and can become a target just like any other organ.
I hope you find your answers and please do something to de-stress as it's not good for you.
Water Zumba is so much fun. Zumba music, lots of the same moves, only in water. Great for me since there's no way I can do regular Zumba. I love the energy, music, and laughter from all the participants. So much fun! Great way to keep moving too.