I just don''t feel well anymore...

[whitby_2773]

marian - let me know if you wanna chat about sphincter of oddi (re my above post)

 

[risingsun]

Date: 2/21/2010 12:51:49 PM
Author: whitby_2773
marian - let me know if you wanna chat about sphincter of oddi (re my above post)

Yes, Whitby, I would like to discuss it. I''m so sorry that you have to cope with it, too. It seems as if so many of us are dealing with pain and you have your own share of it. I''ll order another truckload of dust and send it your way. You must let me know what country you are in so the dust can reach you

 

[whitby_2773]

good morning marian it's 5am here in australia (yaaaaaaaaawn)....

i've had spasm slightly to the right hand side, right up under my ribs with pain that radiates through to my back (big pain - big bad can't talk type pain) intermittently for about 25 years now. they removed my GB about 15 years ago thinking it was a GB issue...and found that my GB was delightfully pink and healthy. the pain continued and increased. they later diagnosed esophageal spasm and sphincter of oddi. the pain in the gut, the nausea, and the pain in my back from this is substantial. i've since developed ulcers in the terminal ileum and my gastro says crohn's, tho my symptoms are transient and tricky (as is the case with a lot of crohn's).

i pulled a girl out of a swimming pool when i was 14 and herniated a whole heap of discs down the side of my spine. this was back in the day when they didn't do a whole heap for back injuries; chiropractors, for example, were virtually unknown. i was then thrown off a horse when i was 16 and things got complicated. it's left me with all sorts of back issues which focus around (currently) 6 herniated discs, osteoarthritis in my spine at various levels (and i wanna get checked out for rheumatoid arthritis when i get back to the States), and a double discectomy after a really horrible experience of the discs basically 'bursting' while on the examination table with my neurosurgeon (i had a neurosurgen, not an ortho, do my back surgery). the problems in my neck have affected my balance and when my neck is bad, i have whole days where i feel dizzy and very, very foggy - sort of like a pre-migraine aura.

my feeling has always been that - when my back is bad, my gut's bad. i also feel as tho, because of my back, a whole lot of things in my abdominal cavity are compressed which kind of stops things 'moving and flowing' like they should.

the things that make me feel best are -

1) being really careful with my posture. i have a bad tendency so hunch forwards, and spending so much time working on the computer exacerbates this. when i stand tall and straight and stretch out, i feel better immediately.

2) moving. the more i sit, the worse i feel - and i'm not just talking 'general feel-good buzz' here. when i walk, i warm up the muscles, which is like an internal heat pack, which is excellent for cramping of every kind. also, i need to be upright for my spine; sitting is simply too much strain. it also puts the muscles in my back and under my diaphragm under strain, and if i sit for too long i get gut pain, abdominal cramping, pain in my hips, lower back and neck, between my shoulder blades and in my arms down to my hands. moving is like an internal massage; for someone with back pain, moving is REALLY IMPORTANT.

3) keeping fats and sugars out of my diet. it's good for my gut and good for my inflammation levels, which are generally very high. i try to eat a low inflammation diet - Dr Perricone's works well for me. i am a salmon junkie by the way - specific diet might sound like a small thing - but it really isn't. my diet plays a HUGE role with inflammation, and inflammation is this girl's mortal enemy.

4) massage. i do it a lot. it works. it's also a wonderful antidote for depression. try it - seriously. those repetitive motions are excellent for your head - sort of like hypnosis in their 'over and over' sensation. very relaxing for the brain. try it, marian - it's a godsend.

5) avoiding stress. stress is BAD for my body. it makes me tense my muscles, which sets my gut off immediately - as WELL as raising the acid in my system also, which i just can't afford. having an acidic system sounds like such a small thing - but it gives me a mouth full of ulcers, it makes my joints swell and go hot, it gives me instant nausea and pain - as well as all the muscular effects. i'm brutal now re stress - if something overly stresses me, i dump it. i know my limits.

6) getting sufficient sleep. i am BAD at this. but i know that when i do get good sleep, i feel fabulous. unusual...but fabulous!!

7) staying away from drs to the extent i'm able. when i do a lot of medical appointments, i feel like 'a sick person' in my head. this is hugely depressing, so i try to avoid them. i also hate medical tests and the time they take, so i try to avoid them for those reasons also. i am not at all recalcitrant when it comes ot the necessary stuff but - apart from that - i try to live like a well person. this is sometimes not easy, but it sure helps the way i see myself and, i believe, is a fair reflection of who i am.

marian, i dont know if any of this helps, and i'm sorry if it doesn't. but i suspect we do have some things in common, and these things work for me, so perhaps you'll find something in this of use.

kareyn

 

[risingsun]

Oh Whitby, you have been and are going through so much

My thoughts are with you. I don't know how you are able to accomplish as much you do. I really admire your strength and positive attitude. Your suggestions are welcome and they all make a good deal of sense. I agree that more movement would helpful. A massage sounds good, as well. I have a feeling that I won't be doing a whole lot until the snow melts. I've become quite unsteady on my feet

I'm taking all of the suggestions very seriously and hope that I can make some changes for the better.

ETA: I took a look at Dr. Perricone's diet. That is something I could try now. I'm going to print out your list for self care and see what I can implement...one day at a time.

 

[AGBF]

Hi, Marian! Hi, Kareyn! Hi, everyone who is reading and contributing! Good morning. I mainly lurk here since I have nothing to add to most medical discussions. I just wanted to say good morning and to tell all of you who are helping each other with concrete suggestions that I applaud you and your wealth of helpful knowledge!

Love,
Deb (AGBF)

 

[risingsun]

Date: 2/22/2010 7:54:02 AM
Author: AGBF



Hi, Marian! Hi, Kareyn! Hi, everyone who is reading and contributing! Good morning. I mainly lurk here since I have nothing to add to most medical discussions. I just wanted to say good morning and to tell all of you who are helping each other with concrete suggestions that I applaud you and your wealth of helpful knowledge!

Love,
Deb (AGBF)

Hi Deb~your support is just as important as the medical advice. Stop by anytime. If it weren't for you, this thread wouldn't exist

The thread, itself, has been therapeutic for me. In addition, others have disclosed their own struggles with chronic pain and other medical conditions. It helps to know that we can talk to and support each other in a safe and caring environment.

 

[Lorelei]

Still thinking of you Marian and my thoughts and prayers continue to be sent your way.

 

[risingsun]

Date: 2/22/2010 11:08:23 AM
Author: Lorelei
Still thinking of you Marian and my thoughts and prayers continue to be sent your way.

Thank you, Lorelei, for all of your support

 

[risingsun]

Update:

I just had my follow up with the oncologist. My bloodwork is unchanged since the last time, six months ago. He said my chance of developing multiple myeloma, at this point, is ~25%. I''m to go home, not worry about it, and return for bloodwork again in six months.

Of the five biopsies, three sites were benign. One area is precancerous and we will be "watching" it. The other area shows atypical cell change. I''m scheduled for surgery in two weeks. My surgeon wants to excise a larger sample and send it for evaluation. My oncologist suspects that it is either a squamous or basal cell carcinoma. Let''s hope not!

 

[Maisie]

Hi Marian,
I am embarrassed to admit I didn''t really understand much of the ''medical speak'' in your post. Would you mind explaining to this uneducated doofus please

 

[risingsun]

Date: 2/26/2010 4:44:39 PM
Author: Maisie
Hi Marian,
I am embarrassed to admit I didn't really understand much of the 'medical speak' in your post. Would you mind explaining to this uneducated doofus please

You are not uneducated, Maisie! I've become accustomed to speaking this way. I have a blood disorder called monoclonal gammopathy. On its own, it can cause either no or minor symptoms. The problem is that it can progress to a form of cancer called multiple myeloma, which affects the bone marrow. It is one of those cancers that doesn't have a high cure rate. My risk of developing this cancer is 25% due to the blood disorder and the levels of certain proteins in my blood. There is no way to prevent this from happening, but there is a 75% chance that it will not progress to cancer. I see an oncologist--a cancer specialist--every six months for this condition.

I have a history of skin cancer. There are three primary types: basal, squamous and melanoma. I have had all of these. I'm considered at high risk to continue to develop more skin cancers. When I went for my follow up appt with the surgeon last week, he removed five spots for further laboratory anaylsis. One spot has the potential to progress to cancer. Another spot already shows changes in the cells. It may have already become cancer or be on its way. That's why he has to remove more of this area for analysis. I see him every six months.

I also see a dermatologist every three months now. Because melanoma is the most serious form of skin cancer, I have to be seen frequently for follow up and health checks.

I hope this makes more sense than my last post. Please feel free to ask me questions. Why should you know what all this means? I wish I didn't

 

[Gayletmom]

Hi Marian,

I''m late to this thread but just wanted to say how brave I think you are. I''m so glad that you have shared with us and hope that the comfort and support is helpful. Several years ago, when I was going through a difficult time, I had a dream in which I was a little bird and my friends were holding me up in the nest. It was a very comforting image for me and I am reminded of it when I read the encouraging words from all of your PS friends.

I am sending prayers and hugs your way and will check in to see how you''re doing. (((((HUGS)))))

 

[risingsun]

Date: 2/26/2010 10:23:05 PM
Author: Gayletmom
Hi Marian,

I''m late to this thread but just wanted to say how brave I think you are. I''m so glad that you have shared with us and hope that the comfort and support is helpful. Several years ago, when I was going through a difficult time, I had a dream in which I was a little bird and my friends were holding me up in the nest. It was a very comforting image for me and I am reminded of it when I read the encouraging words from all of your PS friends.

I am sending prayers and hugs your way and will check in to see how you''re doing. (((((HUGS)))))

Thank you for your response, Gayletmom. I''m not sure how brave I am. Sometimes, I think I''ve become numb to it all. I love your image of your friends holding you up in the nest. I have felt very supported by my PS friends. I appreciate your prayers and hugs. It does help. If I''m having a bad day, I read this thread and know that I''m not alone.

 

[whitby_2773]

Date: 2/26/2010 10:41:36 PM
Author: risingsun

Date: 2/26/2010 10:23:05 PM

Author: Gayletmom

Hi Marian,


I''m late to this thread but just wanted to say how brave I think you are. I''m so glad that you have shared with us and hope that the comfort and support is helpful. Several years ago, when I was going through a difficult time, I had a dream in which I was a little bird and my friends were holding me up in the nest. It was a very comforting image for me and I am reminded of it when I read the encouraging words from all of your PS friends.


I am sending prayers and hugs your way and will check in to see how you''re doing. (((((HUGS)))))

Thank you for your response, Gayletmom. I''m not sure how brave I am. Sometimes, I think I''ve become numb to it all. I love your image of your friends holding you up in the nest. I have felt very supported by my PS friends. I appreciate your prayers and hugs. It does help. If I''m having a bad day, I read this thread and know that I''m not alone.

no - not alone.

xo

 

[gemgirl]

Date: 2/26/2010 4:22:40 PM
Author: risingsun
Update:

I just had my follow up with the oncologist. My bloodwork is unchanged since the last time, six months ago. He said my chance of developing multiple myeloma, at this point, is ~25%. I''m to go home, not worry about it, and return for bloodwork again in six months.

Of the five biopsies, three sites were benign. One area is precancerous and we will be ''watching'' it. The other area shows atypical cell change. I''m scheduled for surgery in two weeks. My surgeon wants to excise a larger sample and send it for evaluation. My oncologist suspects that it is either a squamous or basal cell carcinoma. Let''s hope not!

This is good news that your bloodwork is unchanged Marian. Try not to think about it for now. If the thought of it starts creeping into your mind, just touch your hand to your neck (your new upgraded pendant) and smile and get your mind off that other track.

If that spot *has* to be something, let it be a basal cell. Once those are removed, they don''t return and they have no ability to spread. I had one removed from my face (next to my nose) years ago and I had a plastic surgeon remove it and that was it. Where is this pesky spot on you? While they''re at it, why won''t they remove the other one too and be done with it?

 

[risingsun]

Date: 2/27/2010 11:53:50 AM
Author: gemgirl

Date: 2/26/2010 4:22:40 PM
Author: risingsun
Update:

I just had my follow up with the oncologist. My bloodwork is unchanged since the last time, six months ago. He said my chance of developing multiple myeloma, at this point, is ~25%. I'm to go home, not worry about it, and return for bloodwork again in six months.

Of the five biopsies, three sites were benign. One area is precancerous and we will be 'watching' it. The other area shows atypical cell change. I'm scheduled for surgery in two weeks. My surgeon wants to excise a larger sample and send it for evaluation. My oncologist suspects that it is either a squamous or basal cell carcinoma. Let's hope not!

This is good news that your bloodwork is unchanged Marian. Try not to think about it for now. If the thought of it starts creeping into your mind, just touch your hand to your neck (your new upgraded pendant) and smile and get your mind off that other track.

If that spot *has* to be something, let it be a basal cell. Once those are removed, they don't return and they have no ability to spread. I had one removed from my face (next to my nose) years ago and I had a plastic surgeon remove it and that was it. Where is this pesky spot on you? While they're at it, why won't they remove the other one too and be done with it?

I'm pretty good with putting the monoclonal stuff to the side between follow ups. I do like to keep up with the research, but I try not to overdue it. The pre-CA spot on my arm was removed. We have to make sure that it doesn't come back. That's what I meant by watching it. The other spot is on my right breast. Just where I want some more cutting to be done!! Better there than on my face. The three benign were on my other breast, eyebrow and upper chest. I look quite spotty at the moment. I had a large squamous cell removed from my nose several years ago, which required extensive reconstructive surgery. One of the basal cells required reconstructive work, as well. Because of the melanoma, I also have to have my lymph nodes and spleen checked out every three months along with the overall body check up. I am grateful for my doctors diligence, but it's always "there." I just have to get used to the new protocol and get on with it. I always do. The goal is to make sure that anything that could be a problem is caught early and that is really the important thing. Thank you for checking in on my and for your positive outlook.

 

[risingsun]

Date: 2/27/2010 12:37:27 AM
Author: whitby_2773

Date: 2/26/2010 10:41:36 PM
Author: risingsun

Date: 2/26/2010 10:23:05 PM

Author: Gayletmom

Hi Marian,


I''m late to this thread but just wanted to say how brave I think you are. I''m so glad that you have shared with us and hope that the comfort and support is helpful. Several years ago, when I was going through a difficult time, I had a dream in which I was a little bird and my friends were holding me up in the nest. It was a very comforting image for me and I am reminded of it when I read the encouraging words from all of your PS friends.


I am sending prayers and hugs your way and will check in to see how you''re doing. (((((HUGS)))))

Thank you for your response, Gayletmom. I''m not sure how brave I am. Sometimes, I think I''ve become numb to it all. I love your image of your friends holding you up in the nest. I have felt very supported by my PS friends. I appreciate your prayers and hugs. It does help. If I''m having a bad day, I read this thread and know that I''m not alone.

no - not alone.

xo

Thank you, Whitby. It means so much to me. I know that you "know" that, but I wanted to say it anyway.

 

[Maisie]

Thank you for explaining it to me Marian. You have so much on your plate. I wish I could help with some of it. I don''t have any advice I can offer or anything you can try. I will keep you in my prayers though. When big things happen I try really hard to think of ways to help someone. Its not a nice feeling when someone is unwell or suffering and I can''t do a single practical thing. If I knew you in ''real life'' I would be bringing you nice things and offering to do stuff for you. Do you have people around you to make a fuss of you when things feel awful?

 

[risingsun]

Date: 2/27/2010 4:35:07 PM
Author: Maisie
Thank you for explaining it to me Marian. You have so much on your plate. I wish I could help with some of it. I don''t have any advice I can offer or anything you can try. I will keep you in my prayers though. When big things happen I try really hard to think of ways to help someone. Its not a nice feeling when someone is unwell or suffering and I can''t do a single practical thing. If I knew you in ''real life'' I would be bringing you nice things and offering to do stuff for you. Do you have people around you to make a fuss of you when things feel awful?

Maisie~you are a sweetheart! I know that you would do more, if you could. Whenever you post, it raises my spirits. That means a lot. My DH takes good care of me. He does travel a lot and his best friend is "on call," if I need anything. I have some close girlfriends whom I can count on, too. There are some days that are much better than others. Some of the pain is intermittent. Some of the paiin has been more under control due to some procedures I have undergone. You are good medicine

 

[AGBF]

Date: 2/26/2010 4:22:40 PM
Author: risingsun

Of the five biopsies, three sites were benign. One area is precancerous and we will be 'watching' it. The other area shows atypical cell change. I'm scheduled for surgery in two weeks. My surgeon wants to excise a larger sample and send it for evaluation. My oncologist suspects that it is either a squamous or basal cell carcinoma. Let's hope not!

Thanks for the update, Marian. It looks as if your doctor is literally "all over you", which is good. Anything that has a chance of going awry, he catches beforehand. I am not at high risk for skin cancer (I have other issues), but right now I am awaiting a biopsy on a mole, too. It just goes to show that as soon as you tell people you have a health problem, it turns out others have had similar ones. (I found myself being an expert on heart monitors when another member asked if anyone had had to wear one.)

I am holding you in the light!

Deb/AGBF

 

[risingsun]

Date: 2/28/2010 2:36:13 PM
Author: AGBF

Date: 2/26/2010 4:22:40 PM
Author: risingsun

Of the five biopsies, three sites were benign. One area is precancerous and we will be ''watching'' it. The other area shows atypical cell change. I''m scheduled for surgery in two weeks. My surgeon wants to excise a larger sample and send it for evaluation. My oncologist suspects that it is either a squamous or basal cell carcinoma. Let''s hope not!

Thanks for the update, Marian. It looks as if your doctor is literally ''all over you'', which is good. Anything that has a chance of going awry, he catches beforehand. I am not at high risk for skin cancer (I have other issues), but right now I am awaiting a biopsy on a mole, too. It just goes to show that as soon as you tell people you have a health problem, it turns out others have had similar ones. (I found myself being an expert on heart monitors when another member asked if anyone had had to wear one.)

I am holding you in the light!

Deb/AGBF

Thank you, Deb

 

[Sundial]

Marian I just want you to know that I''m still thinking of you and keeping you in my prayers!

 

[Ellen]

Hello to my dear friend.

I just wanted you to know that I read of all this awhile back. You have been in my prayers ever since, and I will continue to keep you in them.

 

[risingsun]

Thank you so much, Sundial and Ellen

I''ve just come back from my local dermatologist with even more news. Three more pre-CA lesions were removed and another growth has been sent off for biopsy. This is getting ridiculous! I don''t know whether to laugh or cry. I just keep telling myself that my doctors are being proactive and that is a good thing. I have to call DH with the latest news...

 

[LostSapphire]

Good morning Marian

I thought I'd reply here so you wouldnt' miss it: (re: the opal pendant thread where you asked the origin of the opal pendant I posted on the first page). I can't remember where I got that pic from. It was posted by another PS'er a while back, from a vendor website. Will hunt around and see if I can find a photo credit.

How are you feeling today?

LS

 

[risingsun]

Date: 3/7/2010 11:22:02 AM
Author: LostSapphire
Good morning Marian

I thought I''d reply here so you wouldnt'' miss it: (re: the opal pendant thread). I can''t remember where I got that pic from. It was posted by another PS''er a while back, from a vendor website. Will hunt around and see if I can find a photo credit.

How are you feeling today?

LS

Thanks for checking in, LS. Things change throughout the day. You know how that goes. I can feel OK and then go downhill suddenly. Rest and a good laugh really do help. I just read your mangle thread and I''m stilll ROFL. I love the pic of the mangle with the blueberry! Most of all I love your excitement about getting and using your mangle!!

 

[Gailey]

Date: 3/7/2010 12:00:48 PM
Author: risingsun

Date: 3/7/2010 11:22:02 AM
Author: LostSapphire
Good morning Marian

I thought I''d reply here so you wouldnt'' miss it: (re: the opal pendant thread). I can''t remember where I got that pic from. It was posted by another PS''er a while back, from a vendor website. Will hunt around and see if I can find a photo credit.

How are you feeling today?

LS

Thanks for checking in, LS. Things change throughout the day. You know how that goes. I can feel OK and then go downhill suddenly. Rest and a good laugh really do help. I just read your mangle thread and I''m stilll ROFL. I love the pic of the mangle with the blueberry! Most of all I love your excitement about getting and using your mangle!!

No doubt about it, mangling must be good for the soul!

Marian, I am sure your derm is in hyper-cautious mode now and checking everything that blinks (so to speak). I am praying for a positive outcome for you.

As to the pendant that you and Losty are talking about. Well I could kick myself, because I''ve seen it on another website, just this week. Lordy, you gals think you''ve got probs - my brain is completely devoid of retention capability. Some days I can barely remember my own name. Mr Gailey shouts at me these days when I keep asking him the same question time and again.

I''m off to look for the pendant and will report back if I find it.

 

[risingsun]

Date: 3/7/2010 12:29:03 PM
Author: Gailey

Date: 3/7/2010 12:00:48 PM
Author: risingsun

Date: 3/7/2010 11:22:02 AM
Author: LostSapphire
Good morning Marian

I thought I'd reply here so you wouldnt' miss it: (re: the opal pendant thread). I can't remember where I got that pic from. It was posted by another PS'er a while back, from a vendor website. Will hunt around and see if I can find a photo credit.

How are you feeling today?

LS

Thanks for checking in, LS. Things change throughout the day. You know how that goes. I can feel OK and then go downhill suddenly. Rest and a good laugh really do help. I just read your mangle thread and I'm stilll ROFL. I love the pic of the mangle with the blueberry! Most of all I love your excitement about getting and using your mangle!!

No doubt about it, mangling must be good for the soul!

Marian, I am sure your derm is in hyper-cautious mode now and checking everything that blinks (so to speak). I am praying for a positive outcome for you.

As to the pendant that you and Losty are talking about. Well I could kick myself, because I've seen it on another website, just this week. Lordy, you gals think you've got probs - my brain is completely devoid of retention capability. Some days I can barely remember my own name. Mr Gailey shouts at me these days when I keep asking him the same question time and again.

I'm off to look for the pendant and will report back if I find it.

Thank you, Gailey

What has happened to your knee? The remark you made to your doctor was priceless! Whatever did he say in response

I can't remember anything either. We need to get a check up from the neck up

 

[Gailey]

Date: 3/7/2010 12:38:58 PM
Author: risingsun
Thank you, Gailey

What has happened to your knee? The remark you made to your doctor was priceless! Whatever did he say in response

I can''t remember anything either. We need to get a check up from the neck up

Oh lordy, you see this is what I mean. I don''t remember what I said about my knee now. Do you mean the comment about gardeners being like hookers - we need our knees? The doc spluttered coffee all over his keyboard!

 

[Catmom]

Hi Marian, I hope you had a good day today. I''m always thinking of you and hope that this is one of your good days!