Sorry I haven't been on for a long time. I have been having numerous issues and some successes. And it seems as though when the issues become too much I need to rely on my family and friends cause I need to be pushed in the wheel chair, or need help with my walker, need someone to help me do chores, need someone to cook, someone to refill my water bottle like 7 times a day and it all makes me feel like a burden. While they don't say it and they are so supportive it is just how I feel. Sometimes I get the look of really, you can't do that? But it's rare and so many people just do so much and I feel like I am wearing them out. I can't have a job as I am in school so my parents are financing me and much more.
Do you ever feel this way?
Let's begin with success and finish with issues.
Successes:
-->8 months seizure free! So I got my license back!
--> Went to Vegas and got a ton of quality time with family and an awesome tattoo representing how close my family is!
--> Got a new, amazing man.. cute back story. :D
--> Awesome new car!
-->Good marks in courses I'm in currently (3)
Issues
-->Balance, I need support or I fall when standing straight up
--> Extreme pain levels not decreasing.. any suggestions?
--> Being 22 in a wheel chair using a walker or a cane dependant on the day.
-->Not graduating till the end of July and having said course not financed
Good to hear from you! So glad you have been able to keep the seizures at bay! That is wonderful! I know that you're thrilled to be driving again! Oh boy, new car, new man, good grades, and only 4 months from graduation! Woo Hoo!
I give you so much credit for pushing through school, it has to be a major expenditure of energy and effort! You always have a cheerleader here, girlfriend!
My concern for you remains the same as it has been, that you remain under-diagnosed. Have you considered seeing a different Rheumatologist or Neurologist? Shawna, I'm not a Doctor, but I still worry that there is something there that they are missing, that could be being treated. Tell me, am I just being a worry wart, or do you ever have this feeling?
I think we all have concerns about being 'too much', when we are constantly reliant on others for help. It's a tough one to swallow. I'm glad that you were able to have a 'get away' with your family, surely that did you all a world of good. Maybe having a talk with them to tell them how much you appreciate their help and support would make things easier all the way around. They have been behind you all the way through school, through illness, you are so very fortunate to have them! On the other hand, they are so fortunate to have you!
It's good to hear from you again and I'm glad to see you've got a lot of new positives in your life. I can see that you've been exeedingly busy since you last came on. Which is great; it shows that you still have a lot of your Moxie so you're able to deal with changes in life.
I hear you about the pain issue but am at something of a loss in regards of what else to do. Have you discussed increasing your dose with your doctor? Have you discussed trying other medicines to see if they work? These are the top two suggestions i'd make , plus getting extra rest, as not having enough sleep can actually cause pain.
please talk to others on here about the wheelchair and cane issue. Certainly there must be people your age on here who also use one or the other. if not, you can always come to me, because although i'm older than you (51) it still was/is a shock to need one and i feel like a freak in one when everyone else my age and much older is still on their own two feet.
Financing - can you qualify for any grants or loans, like the one that is offered to undergrads of a lower economic status? The Gifford loan or something like that. I'm sure that any school guidance counselor could steer you towards it.
I'm sure that others will have great advice for you as they always do.
Gentle hugs,
Petunia
PS; I totally agree with SK, it sounds like you're under-diagnosed. If your pain is still that great, it would seem that something else is at issue. Sometimes the auto-immune tests come out negative even though the person has several traits of the other auto-immune disease. I'm willing to bet that you do have another auto-immune disease expressing itself in you. i could be wrong. it would make the most sense to check with you doctor.
Hello shawna,
I’m so glad to hear your good news.
I can’t imagine what you’re going through at 22 but I am glad to see how you find the success as you go. I really agree with the others you must have a missed diagnoses…
My pain is relieved by lyrica. I’m not sure if you have tried it or if you are using it, but it helps some of us.
I. Glad to hear about your ca, man and license keep up all the good stuff and thank you for sharing!
Joy