Thank you for the prayers, they are much appreciated. I love what your husband said, he sounds a lot like mine. I think that's the kind of support we need, with a dash of humor!
Thanks again and take care,
Bels
The Poet said:
I will be praying for you Bels to get through your coming ordeals. I know what you mean about the pity party. I always joke that if I had a good pity party and invited a lot of people, just who would actually show up. My husband told me he would, with a covered dish in hand. Gotta love that man.
Thank you for the kind and sincere concern you expressed when you yourself are in the midst of the fire. I am praying for you tonight..that your surgery goes well and you are back on your feet again.
I am feeling a little better neuro-painwise. however I'm in the midst of a bad flare of either PsA or RA (with all theses AI diseases it is impossible to determine which of them are acting up. I have a n EMG next week and then on the 27th I will meet with the neurologist. This neuro left me without a sense of confidance.....she seemed to have NO idea what Sj and PsA and even RA were and therefore there was no understanding other than my spinall issues - of what these diseases are and how they play roles in our pain. I just read an article online about how neuro "burning" pain is common in patients wiht Sj and that is exactly what I have been struggling with. I don't know if i would let this lady anywhere near me with a scalpel.
Anyway....I hope you are well. Prayers for you going up tonight.
Bels said:
Hi Qadosh!
I am so sorry you have had such a rough time lately! I had a day like yours yesterday so I think I can relate very well. I know you are very tired and in a great deal of pain. You also know that probably you need to fix the bad discs. There might be no other way. Without surgery, they will probably cause more neuro damage. I understand your extreme fatigue. Pain is very wearing on our bodies. Don't beat yourself up about it! You are a fighter and I'm proud of you for going out and not hiding under the covers.
I have and continue to use holistic medicine whenever I can, but some things require surgerical intervention, and this is one of them. I have to do it too. I'm having an MVD (micro vasculare decompression) on Oct. 8th. It is brain surgery, complete with shaven head (yay).This surgery is to fix a very painful facial condition; Trigeminal Neuralgia. Because of my previous 2 cervical spinal fusions, they wanted me to have a bunch of preop x-rays. Yesterday, I found out that my recent neck pain has been coming from the two pins that are coming loose from the hardware in my spine. So..more surgery! Thank God the bone fusion is solid! I found out this not a rare, some people just start rejecting the metal in the screws.
We just have to have a good cry and pity party for a couple of days, then put on our big girl panties (like we always do) and have them fixed. Even though we REALLY don't want to. So, I kind of know, first hand, what you're going through.
Have they told you, specifically what they want to do? Please let me know. I really care about what you. I would like to be here for you as much as I can. And of course, have the least amount to surgery as possible.
Oh, I just reread your posting. Neck surgery is not bad. I've had 2 already. I have 4 fused vertebrae in my neck. Just make sure you have a good surgeon who spealizes in the cervical spine. If you have any questions, let me know. I'll check back several times per day until the 8th. My surgery is at 7 am. And don't know how much I'll be on the site for awhile.
Please take care, and remember that many people care about you!
hi Stoney, Lets try to get this reply published this time without interference from the ethosphere.
Yes I have had physical therapy which was mostly aimed at pain relief: heat and cold pack, massage, and stim. It was nice while it lasted but gave no longterm relief. The doc who ordered it did not think there was anything to be gained by exercise.
as far as disease control: my liver enzymes shot up high and they had to terminate all of my meds except for Otexla which is for PsA alone. I've been on it for two months and have not seen any improvement so I have no idea what will be the next step....I suspect I will be on nothing pretty soon....can it be worse than this?
Thank you all for your support. I didn't get notifications of your responses to me so I missed some of the later notes to me until tonight (Monday the 13th) ..Thanks for all your concern. Gentle hugs all around.
Stoney said:
I'm sorry that you're going through such a rough patch. You've probably already gone this route, but have you tried any physical therapy for the back and neck? I know that your shoulder is quite ready to be replaced, so therapy would likely not be helpful. Are there alternatives to spinal surgery at this point? Would pain control be sufficient, such as an implanted TENS? Sorry, just throwing ideas around.
Do you need to up your disease control as well? I don't remember what medications you are taking for all of this.
You'll make the right decisions for yourself, I'm sure. Whatever choices you wind up making will be the right choice for you.