It's been a rough couple weeks.
I'm glad this holidayish season is almost over. I've had a heavy workload and it has taken its toll. If my limb function isn't improved by the next holiday round, I will either have to accept less clients or hire help.
I feel pretty hopeless today. About thirty minutes ago, I was standing in the bathroom in pain, drying my hands on a towel, thinking, "Is there anything I can do that won't cause pain?"
The new medication I began in November isn't working. That I am aware of, I have two more meds to try.
I see the neurologist again on January 6th. I'm curious about getting a spinal tap...just to see if my spinal fluid is abnormal. If so, maybe one of the IV treatments might help...either plasmapheresis or IV immunoglobulin treatments. I have a feeling my fluid would come back normal. It's ironic that I want to have abnormal spinal fluid.
I want to quit everything I'm doing to supposedly help me and see what is supposedly doing some good and what isn't. I'm so fed up with trying different things with little or no results. I have three more acupuncture treatments left; I've been receiving acupuncture regularly since April, 2013.
I feel like I am doing something wrong because my body doesn't respond like it should; like somehow my character is flawed. I realize that is a common response when a person suffers from chronic illness. I've been there before. I never expected to be there again. It's not a helpful outlook.
So far, the only thing that has given significant relief is higher doses of prednisone. And that is not a way to go; I don't want to end up with diabetes.
Last night I couldn't hold back tears. I awoke Hubby around midnight. Between sniffles and sobs and apologies I spoke, expressing my grief. We talked. Puppy Pepe licked me over and over. I want to think Pepe was trying to comfort me, but he probably moreso licked to taste the salts.
Shortly thereafter we all drifted into sleep and dreams.
I have lots of Way sleep dreams lately. In the dreams, I am teaching at a fellowship and wondering, "Why am I doing this? I don't even believe this stuff." In my dreams, I am always wearing business-type clothes which is very unlike me in real life.
Last night I dreamed that I was with some Way believers. We were standing and I was helping to care for someone that was ill; the person was faceless. It seems I was brushing their hair. The people standing around me were all dressed for success, taking about their goals. I felt out of place and like a failure. Someone asked me if I had any goals or dreams, asking where was I headed in the future. I didn't respond and the people began to mock me. Then, in my dream, I burst into tears and shouted, "I want to hike the Appalachian Trail! But my dream has been stolen! Shut up!!!"
And that was that. It was just a sleep dream.
It's okay to grieve. It will pass; it always does.
I'll listen to music; music always helps. I need to get a new Bluetooth; I lost mine last week, and I miss my music while I work with animals.
10 comments:
I'm so sorry for your chronic pain. I have had bouts of pain but nothing that lasts very long. I can't imagine how you deal with it. It's got to be terrible. I hope you can find a medication that helps you.
If it's any consolation, I left my cult leader in 2000 and still, 14 years later I have dreams about him at least once a week, sometimes twice or three times in one week. It's weird. During my day to day living I rarely think about him and feel totally free of his effects. But apparently on a deeper level there is something unresolved.
I hope you can get a new Bluetooth soon. Have a great week.
Thanks Grace!
I look forward to my neuropathy appointment tomorrow. At this point, I'm ready to cut off my hands. Uugh. *sigh*
Dreams are so interesting...and useful, imo. I like to recall my dreams. I can usually figure out where they are trying to help me or if they came on as a result of recent (or past) interaction.
I got a new Bluetooth!!! Yay! It's been beyond helpful with my phone calls...and my music!
<3
~Carol :-)
Sheesh...I lost my comment. Dang it.
(Found my comment! Yay!)
Okay...update.
First...I love my new neurologist.Today was my 4th(?) (or maybe 5th) visit. I had measured hope today as I left his office.
Second...my patience is at the end of its rope...almost. That I have the neurologist in my corner is encouraging. I feel he will not give up. And I have my hubby and family. Hubby went with me today to the appointment. (I realize all this may sound a bit dramatic...but hell...it is. I'm ready to cut my effin' hands off.)
As far as "the next thing"...it isn't a spinal tap. The doc conclusively states that my other tests along with my particular symptoms and onset do not show signs of the two types of neuropathy that fall under the plasmspheresis or IVIG therapy...therefore insurance would not cover either of those. (More than one treatment is usually needed and the cost of just one treatment is $25,000.)
So...to make a long story short...I start a new med tonight. I take it once a week. It's a mild immunosuppressant medication and used mainly to treat RA, chron's disease, certain cancers, and a few other auto-immune diseases. I'll stay on my 5mg/day of prednisone until we see the effects of the shots and new medication. (Sounds horrible...but so are my hands and feet. One of the goals is to get the inflammation under control and to try to get me off systemic steroids. Since other approaches are not working sufficiently at this point...so I'll let this approach be "the next thing.")
Today I received one steroid shot in my lower back and a couple in my neck to more directly address the inflammation at the spinal roots. Steroid shots are safer than oral systemic steroids. (In the past months I have received steroid shots directly into both my hands. I have been on oral systemic steroids, prednisone, going on 2-1/2 years.)
The lumps on the back of both of my hands had the doc somewhat puzzled. He called them effusions but they are not on joints...which is the odd thing. My blood was drawn for more tests to check my uric acid and my liver and blood count.
I had wanted to possibly go on a juice and smoothie fast...but he said not while we are trying the new med. So I'll wait. I trust this doctor and will call him right away if I notice side effects from the med. I go back in 6 weeks.
(Dear universe, god, whatever....and my own body...I am doing the best I can. I'll do my part; you do yours. Amen.)
(((gentle hugs))) . . . I remember wanting to amputate my bowels during the worst of my Crohn's attacks. I still have them. I so deeply understand.
((Gentle (Hugs))) back. I know you understand.
So sorry that you still have the attacks with the Crohn's. Biker dude must be a wonderful man; Hubby here is. I read too many stories about misunderstanding partners.
Do you recall if you have ever taken the medication, methotrexate? If so and if you have energy to share anything about it, I'm eyes. You can email if you prefer. And if you don't have the energy I understand. :-)
Methotrexate is the medication I started on this week. I take it once a week. I read up on it. *sigh* But if it helps and can eventually help heal and/or manage; I'm game for now.
Fortunately the injections from Monday have taken effect and I've had improvement. I felt my body actually relax, but not a tranquilizer/pain pill-induced relaxation. I was having no pain, but yet was acutely aware and I was rested. (I had slept almost 14 hours.*bigeyes*) I felt almost guilty that I felt good; nipped that in the bud quickly. And my hope was raised. But it is still measured hope. I'll know much more 3 to 6 months down the road.
To be able to dress the past few days without much pain has been....like....wow. (Some past nights I've gone to bed in what I will wear the next day because mornings have been so painful to change clothes. I confess, I've stayed in those same clothes for more than a day; the animals I care for don't care...but the linens in the bed care. I do lint roll my clothes regularly...lint rollers everywhere. Ha.)
Thank you Zoe...
<3
I should qualify, my inflammatory bowel disease is no where near what it was . . . but it still causes discomfort. I tend to minimize my pain but it really is not like it was as a younger woman.
Re: Biker Dude . . . you got it. Great guy.
I've never taken that medication.
I'm glad you've had some relief. "Feeling good" is an odd feeling for people with chronic pain. Relax. What's that? :-)
Not sure if we've discussed this . . . do they monitor your bone density health?
Thanks for the reply Zoe.
Yes, I had my most recent bone density test in May or June, 2013. Fortunately, it came out normal. I do take supplements to hopefully address some of the side effects of prednisone.
I had full hip replacement surgery in 2008. Docs think my hip degeneration came on due to so many steroids in my asthma years to keep me breathing.
Now, I've developed horrid acid reflux (since around October, November). Regular OTC and prescriptions aren't working...and on this new med, most of the heartburn meds interfere. I was on the web researching again last night (at 3AM), regarding the GERD. Prednisone harms the stomach lining. Duh. The remedy I read about is bone broth. So, off to the super market to buy bones next. Hmmm...another "next thing."
At least at the current moment, I have the energy and motivation to purchase and cook the bone broth.
I've never been on prednisone. In the 90's during a critical hospitalization re: Crohn's, the doctor told me I wasn't strong enough to survive them. I told him I didn't want them anyway because I didn't want them to eat away at my bones. (That's the short story.)
I have osteoporosis anyway. *sigh*
*double sigh*
They are bone-eaters...and glaucoma production factories, and clinical depression inducers, and diabetes developers, and moon-face sculptors, and weight-gain (not loss) managers, and take-over-adrenal-function perpetrators, and other stuff.
Pred and I truly have a lot-hate relationship.
Glad you were able to 'manage' without them...though I know, know, know that it must have been (& still is) more like hang-on-and-wonder-if-you'll survive instead of managing. Survival trumps managing...managing comes after the clean up...until the next storm when survival-mode strikes again.
(((<3)))
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