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in Sclero Forums (MAIN)
Posted March 20, 2010
I am so relieved and happy for you!
Posted March 12, 2010
Wishing you the very best! You'll be in my thoughts.
Posted March 3, 2010
What she said. :wub:
Posted March 2, 2010
I am forwarding this article to my rheumatologist and pulmonologist. I think they would find it interesting too.
Posted February 27, 2010
Welcome! Glad to see you post. How long ago were you diagnosed? It doesn't sound like your doctor is a scleroderma specialist. There is a place on the medical main page here you can go to find a specialist in your area.
I'm sure we will get some feedback from those who have and are going through "the big change". Stay tuned.
Posted February 26, 2010
I have not found a lot of information on Scleroderma and menopause 'out there'. Here are some questions I am looking for answers to:
Does menopause exacerbate sclero symptoms?
Does scleroderma (systemic) affect menopause symptoms making them more intense, last longer, start earlier....?
How does hormone therapy affect sclerodermians considering the disease itself as well as interaction with medications used to treat scleroderma and its related diseases (Raynaud's etc,.)?
How can you sort out the symptoms of scleroderma vs. menopause vs. medication side effects and does one even need to?
Has there been any research/studies on the effects of menopause on scleroderma vice versa? If not, why not?
Why can't sclerodermians just be excused/exempt from the symptoms of menopause? Don't we have enough on our plates? :huh:
Posted February 22, 2010
Turns out my next appointment with my rheumatologist is not until MAY 1, not March 1 !!! :wacko:
I called to reschedule because my kids have no school March 1 and I don't have a sitter. They told me, "We don't have you in until May 1." Oh well, I was close - they both start with an "M"!
Now if I had found a sitter and driven 2 and a half hours and spent $30 on ferry, $8 on parking and about another $30 on gas, shown up at the reception desk to be told that I didn't have an appointment until MAY, I would have just had myself committed right then and there.
Smac, I too wonder if it's menopause. I also send myself emails but they usually come back "undeliverable"! :blink:
I'd better see if my rheumatologist has anything sooner before I burn the house down or something.
Posted February 12, 2010
Thanks so much for your own stories ladies,
I also walk into rooms, open the fridge or pantry and forget why. It's when I forget where I'm supposed to be or where my kids are that's scary!
Here's another - My youngest had been to the urologist for blood in his urine with no aparent reason (no infections/fever/pain). He was scheudled for an ultrasound of his kidneys like a week out and doctor told me not to worry about a recurrance unless his urine was the color of merlot and he developed pain. This I just erased from my mind and took him in for another painless mild occurance of blood thinking that I needed to get that ultrasound ASAP. I called first but the urologist's clinic was closed so I took him in to our family doctor's extended hours clinic. Family doctor got a hold of urologist by phone and repeated his instructions to me. I didn't remember any of what the urologist had said to me until I heard it again from the family doctor. Talk about feeling stupid!
And Yes! I can't trust myself! How hard it is to have to admit that I am not a reliable person for....well anything! I am struggling with that. People must think I'm an idiot and I'm not really! I hate having to second guess myself. I have to give everybody the benefit of the doubt and say well yea, I probably did it/didn't do it/or thought I did it. Just blame any mishaps on me.
Pulling words out of my brain is sometimes like finding a needle in a haystack. I'll go into a long explanation of the word I'm looking for and end up just babbling and losing the entire point of what I was trying to say in the first place.
Names completely escape me. Sometimes names of people very close to me. Or I forget how to spell someone's name. I was emailing a close friend and must have stared at his name for 5 minutes trying to figure out why it didn't look right. I had completely lost the letter "i" and had replaced it with "Y". I didn't figure it out until I looked at it again the next day.
So, where's my trademark emoticon....... :wacko: There. I might as well just sign my name with him from now on.
Posted February 11, 2010
I can't wait for my next appointment on March 1st to discuss again, this time seriously, my scary brain malfunctions.
The latest episode, yesterday, on my way home from dropping off my youngest at school, I couldn't remember where my oldest son was! I struggled for probably a full minute trying to remember if he had stayed home from school with one of his migraines, if he had taken the bus or if I had driven him to school. Turned out I had driven him to school not even an hour earlier!
These instances are getting more frequent and more serious. I also completely forgot that I was supposed to pick up my oldest's CT films to take with us to his neurology appointment today. We drove 2 hours one way for this appt and I didn't remember the films until we were more than 1/2 way there.
This is more than occasional absentmindedness. I am completely forgetting major things as well as losing words and names.
Someone tell me this is only menopause (Early? I'm 44) and I'm not losing my mind!
in Personal Support
Posted February 3, 2010
Okay, I will be traveling alone via 7 - 8 hour's flight to visit my grandma on her 95th birthday in March.
Let's hear those travel tips!
Here's what I've got:
1. Bring my own water bottle
2. Lip Balm
4. protein snacks
5. layer clothing
I am going to have to get a chair for my shower - AND a sous chef!
Oh Sweet Pam!
Good Grief is right! So it sounds like the first doctors dropped the ball?
I have a good friend who has had 'pnemonia' in her only lung for like 8 months. Turned out it was a nasty infection that needed 10 days of hard core antibiotics which made her very ill as well. Sounds like you two are fighting off the same "nasty".
She is much better now! Best wishes to you in recovery and hang in there with the icky feelings.
I'll be thinking of you,
Posted February 2, 2010
On the subject of GI issues, I know everyone is different but has anyone found certain foods to aggravate or help with bowel issues?
I know that every time I drink coffee, even decaf, I am bothered like 20 minutes later with cramps and other...
I also seem to have issues with raw foods. I'm so bummed because I love salads, not to mention my coffee!
Yogurt does seem to help.
Thanks for your replies,
Thank you Miocean for bringing this up and Thank you Jeannie for the great information! I developed tardive dyskinesia after taking reglan for less than a week. My prescribing doctor did warn me of the possibility and told me to discontinue it immediately if I started experiencing uncontrollable jerks, which I did in my jaw. (Very weird and scary!)
Since then my gastroenterologist has wanted to put me on domperidone but since insurance won't pay for it I have not gotten it. I am curious how it will help me as well as about the cost without insruance.
Wow, I am sorry you are having to deal wih all of this!
Last May I was having some symotoms that the ER doctors thought might be TIA's so I was shipped off to the big city hosopital and had my head examined. Turned out that there IS a brain in there! (yea a lame joke but I had to take advantage...)
All tests came back okay so I never did find out what was causing those symptoms. But I can guess that it was most likely a combination of stress, sleep deprivation, low blood pressure, low blood sugar and dehydration. It's scary when you know your brain isn't functioning like its supposed to! I still have difficulties with recall, short term memory loss, and concentration.
I hope you are feeling better now and wish you success and relief with the PEJ. Enjoy all those precious things in life!
Posted January 22, 2010
So glad you got to visit with your family! Hope all are well. I am not a big traveler but New Zealand is on the top of my list of places to visit before I die - of course will have to win the lottery first!
Did you take any pictures you can share with us? From what I've seen on TV, NZ is breathtaking.
Good to have you back!
Posted January 19, 2010
Thanks Susie and Miocean,
Ahhh prednisone the wonder drug. I can move! My local doctor's office was closed today but will call them tomorrow for an appt. I do think this stems from my back. I am guessing 2 weeks on increased prednsisone and rest rest rest!
Thank you for your concern,
Love you guys,
Posted January 17, 2010
I talked to a friend tonight who told me that lower back pain due to a bulging/herniated/ruptured disc can cause the kind of pain and weakness I am feeling in my hips, knees and ankles.
I have had recurring pain from a bulging disc for 12+ years and I do have the lower back pain with it all right now so I am now wondering if she might be right. I am going to try to get into my general practitioner on Tuesday, if I make it that long - I may be going to ER with it.
I just self-medicateed with a boost of my prednisone which my rheumatologist said I could do when my back pain flared up. Waiting for some relief so I can sleep because now my lower back is hurting constantly - but my hips and knees only hurt when I try ot get up or walk.
Sheesh - I was into the ER with my oldest son for his migraine early this week and was back there today for my youngest so who had a lot of blood in his urine this afternoon (doctors said most likely a burst blood vessel from his fall on the basketball court this morning - no more blood now - Thankfully!!) I am starting to feel quite at home in our Emergency Room. It's embararssing when the doctors and nurses say, "Back again?" and they all recognize us. I just shake my head and roll my eyes. What's a mother with 2 crazy, active boys and scleroderma, among other things, to do?
Posted January 16, 2010
Oh man I have never felt this pain before. It started last night and today I can barely walk! My hips, knees, ankles, elbows and wrists each have the same weakness and pain. My cane isn't much help since my elbows and wrists are affected - I don't have any strength to push myself up. I only hurt when I move, or bear weight on my joints, nothing looks swollen....what is happening to me?
Getting up or in/out of the car is an ordeal but once I am up and moving around for about 10 minutes, it's better.
I emailed my rheumatologist this afternoon and if I'm not better by Monday I'm going to make an appt with her - not looking foreward to a 2 1/2 hour trip to the city alone and immobile. Maybe I could just see my local general practitioner first.
I have never felt this helpless before. I know there are people who live like this everyday. I don't know how they deal with it. What is next for me? I'm kinda concerned.
Thanks for your ears,
Posted January 11, 2010
The Egg and I
Betty was hilarious! I live just 10 minutes away from Egg and I Road where Betty began her adventures in chicken farming. It's fun to try and figure out who she is describing in this book. There was actually a law suit brought against her by a local family who were not happy about how they are portrayed in the book. Born from
The Egg and I was the TV series Ma and Pa Kettle.
If you enjoy Barb's blogs you will also love The Egg and I.
I clean my tub/shower while taking a shower! No reaching, bending, stooping, straining and then feeling like I need a shower afterwards...
I installed a high shelf inside the tub/shower area and keep a scrub brush and cleanser there. I also use my old, nylon, body, scrubby gloves on the tub/shower when my hands don't want to grip anything.
Keep 'em coming!
Thank you all for your support and understanding! I can't tell you how good it feels to have that understanding. You really know how I feel! It's like each of you have have been there done that. ;)
That was going to be a blog but I was having technical difficulties so I posted in the fourms. I am glad I did. You all make me feel more secure about my decision as it was a hard one to make and a long time coming.
I have to 'go to work' today here at home to finish up my bankruptcy papers and then go to the DSHS office to see what I may qualify for in the way of help.
I have missed you guys and am looking forward to having more time to spend on the forums catching up with old friends and getting to know new ones. I am here for you guys too!!!
Posted January 10, 2010
Great advice from Bookworm and Amanda, I have nothing more to add except that I really feel for you. Take care and I hope you find relief very soon!!!
Posted January 9, 2010
Well I finally jumped off the cliff Wednesday and told my doctor and my employer that I need to take the rest of my FMLA (Family and Medical Leave Act) allowance as a complete leave of absence instead of trying to carry on with part time work. Scary but necessary. Strangely though, I have been at peace with it and not too worried about the other shoe falling. I guess I'm all worried out in that department (i.e. how will I pay the mortgage and other bills? - What will I do for health insurance?) I am mainly worried about my health right now and focused on taking care of myself and my boys (I have some new stuff going on with myositis). I guess I will cross the 'health insurance/how do I pay my bills' bridge when I get to it.
Free falling can be quite exhilarating. I like the free part best. I am free to take naps, free to pick up my kids from school and take them to practice. Free to make doctor appointments whenever I want to. Free to wear whatever I want to. Free to make and eat a family dinner around the table. Free to help with homework and free to listen. Free to take a long hot uninterrupted bath and free to stay in my jammies, and unshowered all day if I want to.
Also free to feel vertigo 1/2 the day today and spend the other 1/2 the day on the toilet. Free to be nauseous and unable to get out of my chair. Free to go sleepless at night and be irritable and brain dead all day. Yipee! But I am FREE to do this! I don't HAVE to go to work feeling like all that.
Yes, free is great! Falling is....not so much. I'm sure I will wake up from this honeymoon euphoria stage and go 'splat' here any day now. And I'm sure it won't be pretty either.
Stay tuned for the *splat*
Good to see you post again but sorry about your elbow - ouch! Best of luck with this!!!