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Debbie F.
07-21-2008, 06:33 AM
:(

Hi, I have been dx for approx 5 years, along with RA. I have had a total knee placement, shoulder surgery and am looking at neck surgery if things don't get better. I have numerous other health problems, one of which right now is causing considerable pain. I have multiple herniated discs in my cervical & mid spine with impingement on the radial nerve. I am going in the hospital on Wednesday for an epidural injection under sedation. I am exhausted from the things that have happened to me in the last year. I have had 2 sinus infections, bronchitis, ear infections, joint pain, leg swelling, back, neck and shoulder pain, numbness, insomnia, and tongue sores. I have lost the few remaining teeth I had left on the top of my mouth. I am patiently waiting for a new upper plate, so that I can eat properly. (Infections in my mouth caused me to lose the teeth, 2 of which were perfectly good teeth). All of this has happened since Jan 08.
I have a good family who I know care about me, but even I am tired of me being sick. I feel as if I go from one thing to another, with no let up. I have a wonderful husband, who is recovering from MOHS surgery on his hand for squamous cell skin cancer.(his 2nd surgery on the same hand). We have been planning a vacation to Myrtle Beach for 6 months. We are supposed to leave this Saturday. I am praying I will feel well enough to go. I can't even get the energy up to pack for vacation. I wake up in pain, take my pain medicine, feel better for a few hours, and spend the rest of the day trying to get through. I really need to hear from someone who understands all this and how hard it is to just keep fighting every day.
Thanks for listening.

lcasnyder
07-21-2008, 06:49 AM
I know that it sucks having to wake up every morning not feeling well and having only maybe a couple of hours with the pain med. that you actually kinda of feel normal. It is great that you have the family support. My husband as well is very understand and supportive. I have spent most of last week in the ER, with no avail. They just can't seem to help me. I hope that you are able to make your vacation, just to get some new scenery. We are also go on vacation we leave tomorrow. I am looking forward to it, but am worried what it is going to do to me as a whole. I had to stop taking plaquenil because of the side effects it was causing me. The rheum. hasn't put me on anything yet. I go see him on the 30th. I am hoping that I don't go into a flare before he gets me put on something else if there is anything for me to take. I hope that you feel better soon. I also hope that all goes well with your upcoming surgery should you need it. Take care.

Saysusie
07-21-2008, 07:13 AM
Hi Debbie;
You will find that almost every one here understands how you feel; the constant pain, the debilitating fatigue, the numerous surgeries, the feeling that it is alway one thing after another, and, especially, the feeling of being so sick and tired of being sick and tired.
We think that our constant illness, and how it affects our daily life, can become a burden to our loved ones. But, often, that IS NOT the case! They seem to have more patience and understanding than we give them credit for. But, still, I know how you feel when you say that even you are tired of being sick.
I truly hope that you are able to go on your vacation. Remember to keep yourself protected from the sun (sunscreen, lightweight clothing that covers your body, nice big hats, and sunglasses with UV protection). Do not over do and get plenty of rest.
Wishing you a restful and enjoyable vacation :lol:

Peace and Blessings
Saysusie

Oluwa
07-21-2008, 05:26 PM
Hi Debbie F..

Wow, what a 2008 you've had thus far...hug...squeeze. I hope you are able to enjoy your vacation and that the remainder of '08 will be easier on you...

Sometimes when it seems we just can't take another symptom, we done all we can...we adapt, we endure. When we feel we are filled to the rim...we've had it, had enough of the crap we find we are resilient and progress on..we find one more reason to endure....

Do the minimum till you leave...bank the energy...pack one outfit a day...

We understand. I understand the back surgeries. I've had two lumbar and cervical spine. Cervical was with cadaver bone and hardware.

I live in South Carolina..oh, about 2 hours from Myrtle Beach. Just west of Charleston....

Come talk to us often, all the time..talking releases a lot of the emotions we have about our illness...

Keep looking for your wellness..hugs,
Oluwa

Debbie F.
07-22-2008, 06:23 AM
Thanks for listening to me. Your replies have made me feel emotionally better already. It feels a little strange to be doing this, actually writing about how I feel. The whole process is very new to me. It is good to know that there are people who have been through what I have endured, plus more!

The pain specialist who is going to give me an epidural tomorrow asked me what took me so long to get to him. I just laughed. As we all know you have to jump through all the hoops before you actually get some relief. He asked me why I am still working. I must get asked that at least once a month by a doctor. My answer is always that I will work until I can't. I am afraid that if I quit, my symptoms will increase from lack of movement.

Thanks again... just for being there.

Saysusie
07-22-2008, 10:48 AM
Hi Debbie;
I think that sometimes doctors just don't reside in our world. It's like they have no clue how hard it is to "jump through the hoops" in order to get to see a doctor. But, be that as it may, I'm glad that you finally found a doctor who appears to understand what is going on with you and who will work with you to get your Lupus to a manageable state.
They ask why we continue to work.....here again, I think that they are dwelling on a different planet sometimes. Most of us continue to work so that we can eat, pay our mortgage and keep clothes on our backs. Besides, do they not understand how extremely difficult it is for Lupus patients to get disability??? We have to work because there are few to no alternatives. But, again, be that as it may, we must educate our doctors quite often :?
I am glad that we've been able to make you feel a bit less alone and have helped you emotionally. Remember, you are not alone and we are here to help you in any way that we can.
Are you still planning your vacation? I do hope so!

Peace and Blessings
Saysusie

Debbie F.
08-19-2008, 05:19 AM
I did go on my vacation! : 8) It was wonderful. The trip was very difficult, I live in PA and we traveled to Myrtle Beach, but it was worth the time spent in the car. The resort was just beautiful and very easy for someone like me to access. I could walk to the beach from the pool very easily. My sister helped me get into the water, which was a beautiful 75 every day. We stayed on the 10th floor of our hotel, oceanfront, so we were able to enjoy the view the whole week. But, alas, it only lasted 1 week. I did get some relief from the epidural the doctor gave me. I am scheduled to have another one tomorrow. :( Feeling a little disappointed that the first one didn't do the trick, but from what I understand this is the way it goes. You have to wait 5 to 10 days for it to take effect, and then it only lasted about 1 week. I work in a school as an administrative assistant and school begins next week. I am a little worried that I will be able to handle the added stress with the pain that my back is causing me.
There were so many things that I use to do with my life, things that other people take for granted. Such as having people over on a Friday evening for drinks and snacks. I miss entertaining. I never seem to have enough energy for that kind of thing. Once in a great while I drag myself out to dinner with my husband or our close friends. So, that said, I decided about 1 month ago, that I would have a summer get-together with some of my girlfriends. I asked my daughter to help me and she agreed. Well, it is this Friday evening and I am feeling a little panic even though I know my daughter is there to help. At the time I planned it I didn't know I would be having the epidural. God bless my daughter for always being by my side.
Well, that's it for now. Pray for me tomorrow, as I will pray for all of my new friends!

Saysusie
08-20-2008, 11:06 PM
Debbie;
How are you doing today? How did the epidural go? I'm glad that you had a good vacation with some relief.
Best of luck with your get-together on Friday. Please let us know how it goes and how you are feeling.

Peace and Blessings
Saysusie

Debbie F.
09-12-2008, 05:27 AM
Sorry it's taken me so long to reply. I have had 2 epidurals so far. I am at the end of the 3 week period from the last one. I have an appointment with the surgeon who is doing these for me next week. So far I have had some relief from the constant pain, but I have to say not enough to call it successful. I believe that I can have 1 more, so I am hoping for the best. :roll: I am feeling very emotional today as my son who is a Para-Medic is in Louisiana to help with the aftermath of Hurricane Ike. We live in Pennsylvania and he left 2 days ago as part of a unit who responds to disasters (FEMA). He is quite capable of taking care of himself, but as a Mother I am still worried.
My little party was very successful, my daughter and daughter-in-law stepped up to the plate and really pitched in to help. It was a lovely evening, and I am so happy I did it. I have plans with my daughter to attend a craft fair this weekend. I am hoping I can handle it. It is something to look forward to. Well, signing off for now. Thanks for listening.