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Old 11-26-2013, 07:46 AM #41
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I so hear you on the "I feel like some sort of autoimmune freak. I'm tired of...", Trish.

The doctors don't seem to care, the drugs don't work and often make things worse instead, and cheese is off the menu (literally) because of digestive issues. I'm about ready to try the wine though...and a lot of it, if you get my drift .
I wonder if many MS affected people are driven to drink?

How's your digestive stuff doing these days? That's some kind of an added bonus isn't it?
Mine's mostly been holding up OK, but I'm taking way too much Ibuprofen for joint, muscle and neuropathic pain, so its been letting me know that I need to back off. Its down to choosing which area gets to have the pain and inflammation. Take the Ibuprofen and the body pains are less but the guts react, or don't take it and the guts settle down, but the joints, muscles and nerves fire up.

My left thumb joints have been subluxating for the past few days, which is a new Sx, and exquisitely painful, both when it does it and to have to pull on it to realign the joints. I'm hoping that it just got injured and that I didn't feel it due to numbness in the area, and that it isn't the beginning of rheumatoid arthritis...yet another auto-immune disease. Isn't that stupid? The area has been numb for ages, but now hurts like crazy too. Try explaining that one to a doctor...or anyone else for that matter.

On top of all that, I've been getting electrical-type zaps in the right side of my face around the jaw and cheek. I've already lost some of the muscles of mastication on the left side after suffering a seizure a couple of years ago. Now Trigeminal neuralgia keeps coming to mind with every Zap, and again, I can only hope not.

My MS neuro hasn't come through with alternate scripts for the fatigue or the pain after the two that we've tried caused too many side effects, so I'm about to give up on him...again.
My PCP might have some ideas to offer, so that's my next stop, but I'm not very eager to go in; just so that he can look at me like I have three heads.
So I hear you on taking a doctor holiday too.

Its getting progressively more difficult to keep a positive attitude, without also noting that doing such requires voluntary delusion and a whole lot of denial.
OK...that's my whine, sans cheese for the day.

Passing the whine and cheese tray...

With love, Erika
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Old 11-26-2013, 08:54 AM #42
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Get the cheese out, and hand me a huge bottle of wine (actual wine). I'm going to need it.

My mom is in the hospital.

My dad had to take her there last night. She's been having trouble breathing the past few weeks, and we thought that it was asthma. Apparently not. She's got some sort of internal bleeding somewhere. No idea what's causing it or where it is. They're going to do surgery to look for it.

Her hemoglobin was down to 5. (normal is 12, at least for a woman)

I haven't slept yet. My back is killing me, and my shoulder hurts. I think being tired and exhausted is ticking off the MS. (numbness is a bit more numb)

Going to try to go to sleep in a minute if I can walk to the bed and collapse onto it.
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Old 11-26-2013, 09:05 AM #43
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Aw, I'm so sorry that your Mom is in the hospital. It sounds serious, and that means more stress for everyone.

I sure hope that you can catch some sleep and that your symptoms settle down.
Gee whiz...when it rains, it sure does pour!

In my thoughts for better days Erin.

With love, Erika
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Old 11-26-2013, 11:37 AM #44
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Erin, hope they find out what's going on with your mom quickly…hold steady there...

Sounds as if we are all in a funk about our symptoms and not getting much support or relief from the medical community. I go to the neuro, who is highly regarded, and he talks on and on about other patients who are in such bad shape. I reall, feel bad for them but I'm here for ME. All they can do is play chess with meds…
This bactrim is giving me a headache…grrr. Only one more day on it. I am hoping it isn't a prelude to a cold-DH is coughing a lot, but it's more an end-stage cold.

Well, I like priusutto and brie on a baguette with my whine...
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Old 11-26-2013, 12:20 PM #45
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Erin,

I hope they'll figure out what is wrong with your mom and get her all fixed up. It will be hard on all of you. Try to rest if you can.
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Old 11-26-2013, 12:25 PM #46
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Ok my whine for the day:

I called my doctor's office to see if there might be something wrong with my lower back because I was having a lot of pain for a few days in addition to walking problems. His nurse called me back and said they called in hydrocodone for me. I want to work for goodness sake! Then I said, maybe I should get a note so I can sit down at work and she said that shouldn't be necessary! I stand for nine hours straight with only a break for lunch and bathrooms, maybe I need to write them a letter explaining that. And he does not want to see me for four months.

If I need a chair at work to sit between customers, will I need a doctor's note or one from a lawyer? I'm so frustrated. And I still haven't talked to my boss.

Ok, that was a huge bordeaux, I know.
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Old 11-26-2013, 12:39 PM #47
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I was all ready with a big stupid whine, but after reading Trish's, Erika's,
Wiz's, Debbie's and Erin's horrible pains, Think I will just sulk over to
the corner and count my blessings.

I love you all.
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Old 11-26-2013, 04:18 PM #48
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Oh come on Sally,

Don't be a party pooper...join the party. This isn't a competition. You know that.

Its an opportunity to off load in a safe environment (Safe for others...because sometimes I know that if looks could kill, some people would be dead tight now ).

Here's your cheese, now get going with your whine

With love, Erika
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Old 11-26-2013, 04:37 PM #49
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Quote:
Originally Posted by Erika View Post
Oh come on Sally,

Don't be a party pooper...join the party. This isn't a competition. You know that.

Its an opportunity to off load in a safe environment (Safe for others...because sometimes I know that if looks could kill, some people would be dead tight now ).

Here's your cheese, now get going with your whine

With love, Erika
Tight, yes - right no..
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Old 11-26-2013, 07:09 PM #50
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Quote:
Originally Posted by Erika View Post
How's your digestive stuff doing these days? That's some kind of an added bonus isn't it?
Mine's mostly been holding up OK, but I'm taking way too much Ibuprofen for joint, muscle and neuropathic pain, so its been letting me know that I need to back off. Its down to choosing which area gets to have the pain and inflammation. Take the Ibuprofen and the body pains are less but the guts react, or don't take it and the guts settle down, but the joints, muscles and nerves fire up.
I'm being really careful with my diet. I tried this diet my brother told me about and I did really well on it. Still had all the joint stuff but my digestion was working well until I went off the diet and ended up with diverticulitis again. It's really a simple diet and I never felt hungry on it. It basically eliminates all foods that are known to be be allergenic (dairy, eggs, gluten, etc.). It's called the UltraSimple diet. I'm back on it but modified a little. I still have the lemon and olive oil "shot" in the morning, a smoothie with rice milk, rice protein powder, flaxseed, and fruit (I don't use bananas because I am allergic to those), then vegetable broth mid morning, 2 cups of well cooked veggies and 1/2 cup brown rice for lunch, veggie broth mid afternoon, and 5 oz of protein (chicken or white fish for me) with 2 cups of well cooked veggies and 1/2 cup brown rice. If you feel hungry you can have another smoothie in the afternoon or after dinner. The kinds of veggies you can have are specific but definitely a good variety. It really seems to help me. I didn't read the book but this diet is said to create a more alkaline environment in our body which helps with inflammation and disease. I did have more energy by the end of our 7 day diet. I stayed on it a couple of weeks longer than my brother and SIL and I was feeling pretty good until I started introducing other foods. Gluten seems to be a big no-no for me, even in small amounts.

Erin - Saying some prayers for your mom as well as you and your family.

I'm not sure what the joint stuff is but I am leaning more towards the rheumatologist dx of lupus. It does seem to fit and I'm wondering if some of the digestive issues I'm having are related to that. It just seems that the diverticulitis is inflammatory in nature and not so much an infection.

I try to avoid ibuprofen if I can and try to manage without it. It upsets my digestive system as well and that doesn't feel too good. It's a catch 22 and finding something that works is hard. I am planning on starting the Plaquenil soon as I just don't know what else to do. However, they say it can take up to 6 months to start working with some noticeable difference within 2 months. Sigh. But I'm really at a loss. I hope you too find something that will work for you.

Wiz - What the heck? They won't give you a note that you can sit down but feel it's okay for you to go to work on Percocet? Huh?!?! I've only taken hydrocodone once and it knocked me out cold. Never again will I take it, if I can avoid it. I hope that your manager can help you get in to a management type position soon. How about doing online sales/support? Would the pay be the same?

Sally - Sorry if my whine was a little over kill. I just laid it all out there because, well, it sometimes just sucks for all of us and I know many of you can understand where I'm coming from.
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