So... I had my SS hearing on 11/5 ... and I was APPROVED! AHHHHHHH! I was so excited and I still am! Even though I was having a "tough" time during the hearing.... it kind of made me feel dumb.
I had to keep asking my lawyer if he could help me understand what the judge was asking... and I have a degree in Criminal Justice, so it's not like I didn't know the terms... but he was just talking REALLY fast and I couldn't keep up and I was getting confused very easily.
On one of the judge's questions... he asked me what my neuros prognosis is for me... and I told him, "Honestly, you can't predict MS"... he said, "Okay, but what does your neuro say is in your future for your health?" I said, "Judge, he knows better than to promise me something that he isn't sure he can keep."
I really don't think this judge knew ANYTHING about MS... It was difficult to get through the hearing... Not because I was nervous or anything ( I kinda was ) but he was asking those questions that I don't like thinking about... Like how have things changed in my everyday life... How have things changed in the way I do things with my kids... How things have changed with my around the house chores... I know these are things that need to be asked, but still... it was upsetting to actually have to explain things in depth. Especially how I can't do everything that my kids want me to do... that was the killer.
So, since I'm so "young" (even though I feel like 80 sometimes... especially in the morning when my body does a 'snap, crackle, pop' to get out of bed) I don't have enough "work credits" for SSDI, so I was approved for SSI.
So now, I have to wait for someone to contact me to set up an appointment to figure out my monthly payment, but I was also approved for back pay since April 2011... but my lawyer is gonna try and get it all the way back from when I was diagnosed, since I was diagnosed the day before I had a job interview at the County Jail.
Oh! and I had no idea about this... but I'm automatically approved to be on medicaid? I guess I have to wait for so long to be on medicare? I don't know how all that works.
I'll give more updates on it soon when I hear more.
On another note, I'm waiting to see my neurologist because I might be in a flare? I went in earlier this month from a HORRIBLE reaction to Copaxone in my thigh.
 |
| This was 6 days after my injection! This is like the whole bottom half of my left thigh. |
 |
| I injected on the top part of my thigh.. and this is what happened. |
So, when I went in - they said to have the Copaxone nurse come out and look at it... when she did, she said she had never seen anything like it & was going to contact shared solutions... so I went around this whole back and forth circle of trying to figure out what happened - and they are saying that they think I hit a blood vessel. So who knows? Oh and I injected manually... btw.
I'm hoping their is a cancellation or something at my neuros office soon, because the only opening they have is for the 27th... I am having a new (annoying) symptom too... on top of being more fatigued than "normal" ... I am now having like twitches? I describe it as like my body is having a party under my skin and I'm not invited. It keeps jumping around and it is happening everywhere, even in my right eye.
Here is what it is doing, this is my left thigh by my knee cap. http://www.youtube.com/watch?v=mq_bKS6ikEU&feature=g-upl
I'm keeping note of all my symptoms - and if they are increasing and how long they are lasting... I just hope that it's not a flare. But I haven't been on Copaxone for the 6-month time frame for it to be fully "working"... or at least TRYING to work.
Well - it's time for me to take a break... my eye is doing the annoying twitch thing. I'll update when I can! Oh - and next week I will have 3 blogs posted on MS Conversations (MSAA Blog). Be sure to check it out & let me know what you think! I've been asked to be a monthly contributor to their blog... and I hope it helps people and that others can relate!
xoxo
Ashley
I have the twitches, too. Copaxone actually kind of helped. My eye stopped for several years and is now only bad when I'm really tired (beyond the norm!) The fatigue also lessened after about six weeks as did the injection site reactions. I did really well on it for 6 years until I was jabbing the needles in, and literally had no more sites on my already scarred stomach. I also manually injected. I liked the control factor. Do you normally bruise fairly easily? Have you ever been tested for a bleeding disorder? Is the red area turning darker or more purple or is it just going away? If it's turning colors it is a bruise in which case you may want to see a hematologist (blood doctor) many are also oncologists (cancer), so don't freak out if there are cancer patients in the waiting room. I have a bleeding disorder.
ReplyDeleteI was wondering about that. It did bruise... and I bruise with almost every injection. I've always bruised easy - but it bruised so weird... like spread and had those little spots everywhere! I'm still trying to get into my neuro -- see what's going on.
ReplyDeleteI never had this problem w/ Avonex though... I took it before they had the avonex pen and all that, but I never bruised with it... I thought maybe I was bruising because of the Auto-Inject w/ Copaxone - so now I manually inject, unless it's in an area I can't reach...
My mom (who is an RN) said something about how I have more muscle than "normal". My legs have a lot of muscle. I do have fatty areas... it's just odd, because I'm "big boned" so I have a lot of muscle mass too, from being so active pre-MS. I also do my own physical therapy at home.
I just don't want this written off as "normal"... because I started Copaxone in like late July... and I was doing good on it, then all of a sudden it started all these 'weird' reactions.
I want to see my neuro before I make any moves to seeing any other doctors. I also want to see about going to a dermatologist, because since I started Copaxone, I started getting 'boils' on the inside of my legs...
I don't blame 'everything' on my MS... but I write everything down, so I can narrow it down to when it started and what changed in that time to see what it's related to, if that makes sense.
Thanks for writing though, I'm going to hopefully see the neuro soon... and go from there... it just stinks that BG12 was pushed back till March... UGH!
Hi Ashley! Glad to find your blog! I got diagnosed in October of last year. I was 39yrs old and I started on Copaxone. Here is a link to my story.
ReplyDeletehttp://elvismoodyblue.blogspot.com/2012/11/blast-from-past-yes-it-is-really-me.html
I left the blogging world for like 2yrs and basically fell of the face of the earth mainly because I was losing weight (on purpose) and also because I was starting not to feel well. Well low and behold!! The story is documented there but the Cliff Notes version.
I started on Copaxone like I said. In the beginning I would get bumps and some redness. I would do warm compresses for like 5 minutes before injection, then after injection leave a cold pack on. Now I have to be honest. I don't do either. I use the Autoject. I think after time your body will get used to it. It took me at least 8 to 9 months. But to get to that point I am so happy that it isn't a project anymore to give myself the shot every night. I used to dread doing it because it was like a 20 minute ordeal every night. I promise it will get better once your body adjusts to it.
Are your thighs the only place you are having those issues? Maybe it is just an area you might not be able to inject in? For instance, you will read in my blog...I had a tremendous weight loss. I cannot inject in my arms because I have too much loose skin. So I have to do more injections in my stomach to match the ones in my arms because of not being able to use my arms as sites. Your thighs may be just too sensitive of an area? Just a thought. Shared Solutions told me to consult my doctor to see if they had any other suggestions of alternative sites as well.
I really hope they can help you because Copaxone has helped. I have not had a flare this past year. Thank God! And my one year anniversary showed no new lesions. I too am very interested in the BG12. I may wait to see how it works in the regular market for awhile vs the clinical phase.
Nice to "meet" you Ashley. I will be following now. :)
Jodi
PS..Congrats on the SSI. I'm very impressed that you were able to get it because in our state it is VERY difficult to get.