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Hello Again - I have been away for awhile!

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Old 10-10-2009, 01:02 PM   #1
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Hello Again - I have been away for awhile!

Hey, I have been away for quite awhile now.

My last post to this board was in mid April and so much has happened since then. It has been a little crazy. On April 16th I was at work and had a grand mal seizure. Somehow during that seizure I destroyed my hip joint. After they transported me to Baylor University Hospital I woke up in ICU and had to have my hip joint rebuilt with 12 pins and 2 brackets but they did it! The seizure was a really a scary thing. I had never had them before. I had been having a really hard time sleeping (only 2-4 hours a night) and then having alot of drowsiness accompanied with alot of dizziness.

I was out of the hospital 9 days later and completely unable to get around at all. It took 6 weeks before they dr would agree to let me drive or return to work at all and only on a part time basis. My employer had been very supportive and understanding for the last 5 years of my 7 year employment with them. They watched my decline and tried very hard to keep me on. However, you can imagine that last episode shook them up pretty bad and they sat me down and told me that I could not return to work. They felt that my working was literally killing me. My doctor actually agreed and strongly recommended that I stop working and file for disability. This was not by far the first time this recommendation had been made to me by my dr. but I really wanted to continue working and frankly I needed the money and insurance. But, considering what had just taken place I had to give in and quit. I had been pushing myself for so long that I missed seeing that line where I needed to stop. I just felt like if I had made it through the other day where I felt so horrible, I could make it through this one too. This went on and on with that bar being set at a worse and worse level. Till I was killing myself.

I have gone through bouts of frustration, depression, relief, fear and loneliness. I am sure I will go through all of those over and over. But it is what it is, right? I'm sure that there are many others on this board that know exactly the array of emotions we feel going through this.

The long term use of steriods had finally done the damage to my bones. It really must have gotten bad fast because I had actually had a bone density test about a year before and I was diagnosed with osteopina (sp?). I had been having multiple rib fractures for years. But the kind of damage I did to my hip was unbelievable. My femur had busted through my hip socket about three inches. They had to rebuild my hip joint and a few bones in that area as well. (the ortho surgeons were so proud of their work, they were breaking their own arms to pat themselves on their backs)

Talk about irony, my sister also has lupus but our symptoms are very different. I had my own issues with my organs and CNS problems and she had hip joint problems and seizures. Well... you see the irony here I am sure!

I am still on prednisone but we are trying to lower it down. My rheumi needs to get some "clean" blood work from me. He said with the chemo and all of the prednisone, in really high doses for an extended period of time, this is very difficult. He said it is blocking the antibodies and he needs to know what they are so he can address my disease in a correct manor. I am down to 6 mg a day now. My pain is worse by far ofcourse and that fatigue is unbelievable. But I am not working. Before, I had that additional worry and it is actually a huge load off my shoulders. I have applied for ss disability. Ofcourse denied on my first request so I am getting an attorney to appeal it. The sad thing is they had me sign a release for them to get my medical record to make their decision. My dr had them all ready for them and they never even requested them. They just out and out denied me!

I am back on the neurontin. It helps alot with the fibro pain and it is suppose to help prevent future seizures. I begged them to do this so I wouldnt have a seizure disorder on my medical record. You see, if you get that on slapped on your record, your driver's license is suspended for atleast 6 months. I am now also on some really strong pain medication to keep me "comfortable" and keep my bp from sky rocketing any more that it already does. Now I am on methadone (the long acting) and narco (short acting). Which is better I guess than what they had me on for the first few months. I was taking Oxy for the long acting and dilaudid as the short acting. But to be honest, I was still pegging a 7 on the pain scale! Now it actually comes down to a 3 on good days.

I'm not really sure what comes next. My CRP and ESR are rising so we are holding our breath. Hopefully he will be able to get some answers very soon.

I hope you are all doing well and it is good to be back online and posting. I now have a laptop so I don't have to sit at a desk to be online. That was the reason I was off for so long. We had a computer but first I couldnt get around much and then sitting at the desk for any length of time was just not something I could do. Now, I have a little laptop table for me to be able to use in my bedroom and I can prop up some pillows and be comfortable while online.

Take care and as I said, glad to be back! Vee and Goldenwings, I hope you are both doing well. Thank you for the years of giving me a shoulder to cry on and an outlet for my frustrations at times.

Last edited by ErinS64; 10-13-2009 at 07:36 AM.

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Old 10-13-2009, 07:38 AM   #2
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Hello Again - I have been away for awhile!

On a side note, I am wondering if anyone else posting has CNS Lupus?? That is what they are telling me I have and from what I have read psychotic episodes are possible?? That is such a scary thought for me. The seizures are scary dont get me wrong, but to be honest the other scares me so much more!

Old 10-13-2009, 07:38 AM   #3
Join Date: Feb 2004
Posts: 5,487
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Hello Again - I have been away for awhile!

Oh, Erin...! WOW, what a tough & nasty year you're having. I'm so sorry to read what's happened with you since you last posted. I'll take it as a hopeful sign that you're at least able to power up the new laptop & touch base w/us.

Is your rheumie getting closer to a "clean" look at your bloodwork, do you think? Did he launch this new effort before or after your seizure & hip break? Is this same rheumie or a new one? Whichever, I hope his plan of action turns up useful info fast. Please stay in touch. All my best wishes, Vee

Old 10-13-2009, 08:08 AM   #4
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Hello Again - I have been away for awhile!

LOL..yep, it has been a very crazy ride!!! I am soooo thankful for my laptop! My laptop is my friend!!! lol... sorry just being a little goofy!

I had started seeing this rheumi at the end of last year. He is the chief of rheumatology at Presby in Dallas. A very large hospital here. He was the chief of internal med at the VA hospital so he is suppose to be pretty good.

He had started me down on the prednisone before this happened. But considering how high of a dose I had been on for so long it has been a very slow process. We have had to bring it back up on quite a few occasions due to my symptoms getting worse or infections or know how it goes.

My neuro is new and he has been running his own tests. Hopefully they will get it all worked out soon. I guess we will see what happens...sorry, having a hard time righ tnow.

wil bost moe later

Old 10-13-2009, 05:39 PM   #5
Senior Member
Join Date: Jun 2009
Location: Brielle, NJ
Posts: 221
heidiclouser HB User
Re: Hello Again - I have been away for awhile!

Hi Erin. I'm new since you were MIA. You did have a terrible time. So sorry. I hope things get better soon. I actually had a pretty good day for a change. So hang in there. I hope to see you here often.


Old 10-13-2009, 06:03 PM   #6
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Hello Again - I have been away for awhile!

Whew..sorry about my abrupt end on the prior post. I had a really strange time there for a while. Really dizzy and had a hard time putting my words together and it looks like typing too!! I feel better now though. I have spells now that are really strange. I will get so dizzy and my head hurts and just confused. Not like brain fog, which I have alot, it is alot worse than that. This part of it effecting my head is new and hard to get use to. I called my rheumie this afternoon. Today's was pretty severe and kind of scary. Luckily I came out of it ok. I have had mild attacks like that but nothing as severe as what I experienced earlier. I as was trying to say in my previous post, on my last appt he was saying they were getting close. My bloodwork is getting more consistant. He cant take me off the prednisone completely. My lowest dose will be 5mg. Any lower than that would be too dangerous and I am almost there. I am not really all that clear what he is looking for. I am having to take a leap of faith here and hope he knows what he is doing.

However, if I have anymore days like i did today..I wont be patient much longer. Pain is one thing..My brain is another. He mentioned after my seizure doing another round of cytoxan, but that stuff was so horrible the thought of going through it again is really scary for me. I hated every minute of it. The nausea and edema was so extreme. My face swole up so bad the under part of my eye lids protruded out from under my eyes! I have tried mtx, cellcept and cytoxan but nothing has really been able to stabilize me. He mentioned that they were working on something new, but didnt tell me what that was.

I will let you know as soon as I know something too. It is good to be back and able to interact with the world even if it is only via the internet. I miss working though. I am very lucky I have my mom or I would be in big trouble.

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