Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hi everyone. I'm fairly new to this group, but I've been reading your messages. My heart really goes out to all; some of your stories scare the life out of me! If you don't mind, I need to ramble my saga to someone. I really have a lot to say and I feel very unsupported. In many ways to me, if you don't have something visibly wrong with you or you haven't lost your hair due to chemo, people have a hard time understanding that there is something wrong! In April of '05 I wasn't feeling myself but couldn't put a finger on what was wrong; my family doctor had said that he thought maybe I needed some counseling or an anti-depressant. In May, I had lost 75% of my hearing, my smell completely, and my taste started to come and go. My doctor put me on zyrtek, as he was convinced this was all due to allergies and that I needed tubes in my ears. I was getting very frustrated and the million crickets singing in my ears were about to drive me insane! One night I woke up with my eyes bulging and so sensitive to any light!! (I had just been to the eye doctor for a regular checkup 2 weeks prior!) I was told that I had Papilledema, the optic nerves were swollen and the pressure in my eyes was over 30! The Ophthalmologist had a suspicion and sent me to a Neurologist. After several MRIs, spinals, blood tests, and trips to the Rheumatologist to rule out lupus, he sent me in for a ct scan to rule out sarc. Swollen lymph nodes and clear lungs were what he saw, so he sent me in for a biopsy. I was dx late October. my Neurologist had only one other case like mine, and she responded very well to treatment so he was very hopeful that all would go well. I started out on Prednisone, but I ended up with giant hives for almost 3 weeks. Then we tried Methylprednisolone, it seemed to help for a while then the effects of the steroid were worse then the disease. I was also taking Istalol drops every night for my eyes. My hearing has improved (although there are still a hundred crickets), the smell is gone and the taste still comes and goes, I've gained 30 pounds, lost a lot of hair, I'm completely exhausted, have weird bruises in the strangest places, don't sleep, have horrible sweats, and the depression and moodiness are unbelievable. I feel like I've lost a whole year of my life and oh yeah I turned 40 this year, my oldest son has left to be on his own and my youngest son is a senior and never home anymore! Some of my friends have " cut me loose " because I'm too much " drama " , I'm alone a lot and so I guess the depression has a tight hold on me! Anyone who know me knows that I am not drama, I'm very private so I don't share my aches and pains with anyone, but nor do I want to be around a lot of people cause some times its really hard not to show the pain! I just came off all the medication this August and I was so excited to get back to my normal life!! Wow, what a slap, when as I was weaning off the meds my muscles and joints started to hurt all the time. I'd wake up in the middle of the night crying because I hurt so badly. It's starting to get a little better, but now my eyes are acting up again… I'm just really scared about what to expect next!! Whenever I get a cough, I'm terrified that it's affecting my lungs! Well enough rambling… I only allow myself a few minutes to feel sorry! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hi Deb, Well you've come to the right place. We have lots of ears, and some can still hear stuff. I totally understand the frustration of being told that "you're just depressed" when you know there's something else going on. and yeah, when you don't have a cast, or that dead chemo look, or a scar to show what 's happening-- it's hard for others to figure out that you are sick. There is a booklet that we've all found helpful-- It's the BUT YOU LOOK GREAT! from Invisible Disabilities Advocate. You can read the first chapter online at their site. The address is in our LINKS. (Scroll down to the bottom section of this and every email and you'll see the LINKS connection.) What makes them think you have sarcoidosis? I know that the photosensitivity (uveitis and iritis) is horrible. It sounds like you've not had a biopsy that shows what's going on? I do hope you're seeing an OPHTHALMOLOGIST (md) and not an OPTOMETRIST (OD). tHIS IS serious stuff with your eyes, and needs agressive treatment with both predforte drops and homatropine or another eye drop to keep the eyes dilated. This can save your vision and keep you from an acute glaucoma attack. Much of the loss of taste, smell and hearing is the cranial nerves 6, 7 and 8. any inflammation, whether it's granulomas or vasculitis (swelling of the blood vessels) that puts pressure on those nerves can create these problems. Steroids only work so far-- take them away, when you have multi-system involvement, and your whole body goes into withdrawal. The pain of the withdrawal from steroids means that you're going down to quickly. If you've been on them for a couple of years-- your adrenals don't know how to produce cortisol, and they have to wake back up. We normally produce about 15mg of cortisol daily-- so if they put you on 60mg a day-- then it can take months to a year or more to wean off. The adrenals also control heart rate, blood pressure, the fight or flight reaction, as well as work with the other glands to produce hormones-- so yeah, if any of the glands (pitutary, hypothalmus, thyroid) get out of whack-- then you have all these symptoms. as far as the depression-- if you are in pain-- and it sounds like you are- then your sleep patterns are being disrupted. This throws off the seratonin and norepinephrine levels, and depression sets in. Then the depression can cause pain and anxiety, as can not knowing what is happening to you, and you are now in a pain/depression cycle. I know that adding all this, having kids leave home, losing friendships, all take a toll. A huge toll. However, you are not alone. We have 400+ people that are all in various stages of diagnosis. So the information we have gleaned is incredible, and we are willing to share and answer questions. Just ask-- that way we can pinpoint what you need addressed, and go from there. We don't have any MD's on this site. We're all in this and learning as we go. We've found that our information on sarcoidosis is generally much more progressed that what our MD's have. So feel free to use the LINKS and print out the articles to take with you to your MD's. You'll find that by empowering yourself and being proactive in your care-- that you will feel better. (and you'll scare the crap out of your MD's--which can be cause for celebration--ours, not theirs.) It may also take awhile for them to put their egos down, and work with you. If they can't do that-- find one who will. Do know that all our Moderators and Owners have this disease, and that we will try to make sure and answer your posts as quickly as possible, but if it's a day or so-- be patient-- we are tag-teaming out here between taking care of ourself also. Welcome to the group, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Hi Deb P. I m Deb T. I have never have the issues with the eyes and the ears like you but have had and have had the awful pain you are describing in your joints and muscles and the night sweats . Not to scare you but these aches and pains all come along with most autoimmune diseases including sarcoidosis, lupus, MS. Do you also feel tired all the time? I also can relate to the depression. Mine has stemmed from this diseases as well. You feel so alone and that nobody understands what youare going through.. I had to leave my job of 17 years and little by little my friends dwindled away too. The issues with the drs trying different types of meds and some working and some not is frustrating indeed. So you have come to the right place . We can all relate to you here. A lot of the experiences you are having have happened to us to us too. So if you want to rant, rave, or just commiserate with others , we are all here for you. Any questions you need answered we can try to help. You have come to the right place. Hugs, Deb T.Debbie wrote: Hi everyone. I'm fairly new to this group, but I've been reading your messages. My heart really goes out to all; some of your stories scare the life out of me! If you don't mind, I need to ramble my saga to someone. I really have a lot to say and I feel very unsupported. In many ways to me, if you don't have something visibly wrong with you or you haven't lost your hair due to chemo, people have a hard time understanding that there is something wrong! In April of '05 I wasn't feeling myself but couldn't put a finger on what was wrong; my family doctor had said that he thought maybe I needed some counseling or an anti-depressant. In May, I had lost 75% of my hearing, my smell completely, and my taste started to come and go. My doctor put me on zyrtek, as he was convinced this was all due to allergies and that I needed tubes in my ears. I was getting very frustrated and the million crickets singing in my ears were about to drive me insane! One night I woke up with my eyes bulging and so sensitive to any light!! (I had just been to the eye doctor for a regular checkup 2 weeks prior!) I was told that I had Papilledema, the optic nerves were swollen and the pressure in my eyes was over 30! The Ophthalmologist had a suspicion and sent me to a Neurologist. After several MRIs, spinals, blood tests, and trips to the Rheumatologist to rule out lupus, he sent me in for a ct scan to rule out sarc. Swollen lymph nodes and clear lungs were what he saw, so he sent me in for a biopsy. I was dx late October. my Neurologist had only one other case like mine, and she responded very well to treatment so he was very hopeful that all would go well. I started out on Prednisone, but I ended up with giant hives for almost 3 weeks. Then we tried Methylprednisolone, it seemed to help for a while then the effects of the steroid were worse then the disease. I was also taking Istalol drops every night for my eyes. My hearing has improved (although there are still a hundred crickets), the smell is gone and the taste still comes and goes, I've gained 30 pounds, lost a lot of hair, I'm completely exhausted, have weird bruises in the strangest places, don't sleep, have horrible sweats, and the depression and moodiness are unbelievable. I feel like I've lost a whole year of my life and oh yeah I turned 40 this year, my oldest son has left to be on his own and my youngest son is a senior and never home anymore! Some of my friends have "cut me loose" because I'm too much "drama", I'm alone a lot and so I guess the depression has a tight hold on me! Anyone who know me knows that I am not drama, I'm very private so I don't share my aches and pains with anyone, but nor do I want to be around a lot of people cause some times its really hard not to show the pain! I just came off all the medication this August and I was so excited to get back to my normal life!! Wow, what a slap, when as I was weaning off the meds my muscles and joints started to hurt all the time. I'd wake up in the middle of the night crying because I hurt so badly. It's starting to get a little better, but now my eyes are acting up again… I'm just really scared about what to expect next!! Whenever I get a cough, I'm terrified that it's affecting my lungs! Well enough rambling… I only allow myself a few minutes to feel sorry! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Hi Deb T> and Deb P.,The joint and muscle pain sometimes is beyond belief. Never knew pain to this degree (have had four children and that was nothing!). I know I have times where I grieve for my old life...it really is true that good health is something that can be taken for granted. Being able to interact with others who know what you are going through is great. I just happened to stumble across this site recently and am so glad that I did.Best to all,BeckyDebbie wrote: Hi Deb P. I m Deb T. I have never have the issues with the eyes and the ears like you but have had and have had the awful pain you are describing in your joints and muscles and the night sweats . Not to scare you but these aches and pains all come along with most autoimmune diseases including sarcoidosis, lupus, MS. Do you also feel tired all the time? I also can relate to the depression. Mine has stemmed from this diseases as well. You feel so alone and that nobody understands what youare going through.. I had to leave my job of 17 years and little by little my friends dwindled away too. The issues with the drs trying different types of meds and some working and some not is frustrating indeed. So you have come to the right place . We can all relate to you here. A lot of the experiences you are having have happened to us to us too. So if you want to rant, rave, or just commiserate with others , we are all here for you. Any questions you need answered we can try to help. You have come to the right place. Hugs, Deb T.Debbie <deb_perky (AT) yahoo (DOT) com> wrote: Hi everyone. I'm fairly new to this group, but I've been reading your messages. My heart really goes out to all; some of your stories scare the life out of me! If you don't mind, I need to ramble my saga to someone. I really have a lot to say and I feel very unsupported. In many ways to me, if you don't have something visibly wrong with you or you haven't lost your hair due to chemo, people have a hard time understanding that there is something wrong! In April of '05 I wasn't feeling myself but couldn't put a finger on what was wrong; my family doctor had said that he thought maybe I needed some counseling or an anti-depressant. In May, I had lost 75% of my hearing, my smell completely, and my taste started to come and go. My doctor put me on zyrtek, as he was convinced this was all due to allergies and that I needed tubes in my ears. I was getting very frustrated and the million crickets singing in my ears were about to drive me insane! One night I woke up with my eyes bulging and so sensitive to any light!! (I had just been to the eye doctor for a regular checkup 2 weeks prior!) I was told that I had Papilledema, the optic nerves were swollen and the pressure in my eyes was over 30! The Ophthalmologist had a suspicion and sent me to a Neurologist. After several MRIs, spinals, blood tests, and trips to the Rheumatologist to rule out lupus, he sent me in for a ct scan to rule out sarc. Swollen lymph nodes and clear lungs were what he saw, so he sent me in for a biopsy. I was dx late October. my Neurologist had only one other case like mine, and she responded very well to treatment so he was very hopeful that all would go well. I started out on Prednisone, but I ended up with giant hives for almost 3 weeks. Then we tried Methylprednisolone, it seemed to help for a while then the effects of the steroid were worse then the disease. I was also taking Istalol drops every night for my eyes. My hearing has improved (although there are still a hundred crickets), the smell is gone and the taste still comes and goes, I've gained 30 pounds, lost a lot of hair, I'm completely exhausted, have weird bruises in the strangest places, don't sleep, have horrible sweats, and the depression and moodiness are unbelievable. I feel like I've lost a whole year of my life and oh yeah I turned 40 this year, my oldest son has left to be on his own and my youngest son is a senior and never home anymore! Some of my friends have "cut me loose" because I'm too much "drama", I'm alone a lot and so I guess the depression has a tight hold on me! Anyone who know me knows that I am not drama, I'm very private so I don't share my aches and pains with anyone, but nor do I want to be around a lot of people cause some times its really hard not to show the pain! I just came off all the medication this August and I was so excited to get back to my normal life!! Wow, what a slap, when as I was weaning off the meds my muscles and joints started to hurt all the time. I'd wake up in the middle of the night crying because I hurt so badly. It's starting to get a little better, but now my eyes are acting up again… I'm just really scared about what to expect next!! Whenever I get a cough, I'm terrified that it's affecting my lungs! Well enough rambling… I only allow myself a few minutes to feel sorry! ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Thanks Tracie!! I had a mediastinoscopy in October, where they biopsied a piece of the lymph nodes. So I do have a scar but I most of the time keep it cover up. I do see an Opthamologist and I was doing the Pred-Forte drops for a couple of months before the medrol. The whole eye thing scares me... I could live without hearing, smelling, or tasting anything, but I do not want to go blind!! Thanks for the book idea, I will try to find it!! Just so you know it took 3 months to come off the steriods and the dosage kept lowering by only 2mg... I was so anxious to get off them that everytime the doctor mentioned having to stay on a little longer to wean slowly I would burst into tears! But I did what I was told.... so I'm waiting for my body to catch up. I really appreciate your advise!! I've allowing the MD's to inform me and I guess that it's time I take control!! Thanks, Deb > > Hi Deb, > > Well you've come to the right place. We have lots of ears, and some can > still hear stuff. > > I totally understand the frustration of being told that " you're just > depressed " when you know there's something else going on. and yeah, when you don't > have a cast, or that dead chemo look, or a scar to show what 's happening-- it's > hard for others to figure out that you are sick. > > There is a booklet that we've all found helpful-- It's the BUT YOU LOOK > GREAT! from Invisible Disabilities Advocate. You can read the first chapter > online at their site. The address is in our LINKS. (Scroll down to the bottom > section of this and every email and you'll see the LINKS connection.) > > What makes them think you have sarcoidosis? I know that the photosensitivity > (uveitis and iritis) is horrible. It sounds like you've not had a biopsy > that shows what's going on? I do hope you're seeing an OPHTHALMOLOGIST (md) and > not an OPTOMETRIST (OD). tHIS IS serious stuff with your eyes, and needs > agressive treatment with both predforte drops and homatropine or another eye drop > to keep the eyes dilated. This can save your vision and keep you from an > acute glaucoma attack. > > Much of the loss of taste, smell and hearing is the cranial nerves 6, 7 and > 8. any inflammation, whether it's granulomas or vasculitis (swelling of the > blood vessels) that puts pressure on those nerves can create these problems. > > Steroids only work so far-- take them away, when you have multi- system > involvement, and your whole body goes into withdrawal. The pain of the withdrawal > from steroids means that you're going down to quickly. If you've been on them > for a couple of years-- your adrenals don't know how to produce cortisol, and > they have to wake back up. We normally produce about 15mg of cortisol daily-- > so if they put you on 60mg a day-- then it can take months to a year or more > to wean off. > > The adrenals also control heart rate, blood pressure, the fight or flight > reaction, as well as work with the other glands to produce hormones-- so yeah, if > any of the glands (pitutary, hypothalmus, thyroid) get out of whack-- then > you have all these symptoms. > > as far as the depression-- if you are in pain-- and it sounds like you are- > then your sleep patterns are being disrupted. This throws off the seratonin > and norepinephrine levels, and depression sets in. Then the depression can > cause pain and anxiety, as can not knowing what is happening to you, and you are > now in a pain/depression cycle. > > I know that adding all this, having kids leave home, losing friendships, all > take a toll. A huge toll. However, you are not alone. We have 400+ people > that are all in various stages of diagnosis. So the information we have > gleaned is incredible, and we are willing to share and answer questions. Just ask-- > that way we can pinpoint what you need addressed, and go from there. > > We don't have any MD's on this site. We're all in this and learning as we > go. We've found that our information on sarcoidosis is generally much more > progressed that what our MD's have. So feel free to use the LINKS and print out > the articles to take with you to your MD's. You'll find that by empowering > yourself and being proactive in your care-- that you will feel better. (and > you'll scare the crap out of your MD's--which can be cause for celebration--ours, > not theirs.) It may also take awhile for them to put their egos down, and > work with you. If they can't do that-- find one who will. > > Do know that all our Moderators and Owners have this disease, and that we > will try to make sure and answer your posts as quickly as possible, but if it's a > day or so-- be patient-- we are tag-teaming out here between taking care of > ourself also. > > Welcome to the group, > Tracie > NS co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Wow Deb T!! Thank you so much!! It really does help to know that there are others who feel the same way I do!! I am exhausted all the time, but unfortunately my husband is self-employed so I have to carry the insurance so therefore I have to work!! That has been tough and I feel bad cause I miss alot of time because of not feeling well!! Thanks again!! I'm glad that I found this group!!! Deb P Hi everyone. I'm fairly new to this group, but I've been reading > your messages. My heart really goes out to all; some of your stories > scare the life out of me! If you don't mind, I need to ramble my > saga to someone. I really have a lot to say and I feel very > unsupported. In many ways to me, if you don't have something > visibly wrong with you or you haven't lost your hair due to chemo, > people have a hard time understanding that there is something wrong! > In April of '05 I wasn't feeling myself but couldn't put a finger on > what was wrong; my family doctor had said that he thought maybe I > needed some counseling or an anti-depressant. In May, I had lost > 75% of my hearing, my smell completely, and my taste started to come > and go. My doctor put me on zyrtek, as he was convinced this was all > due to allergies and that I needed tubes in my ears. I was getting > very frustrated and the million crickets singing in my ears were > about to drive me insane! One night I woke up with my eyes bulging > and so sensitive to any light!! (I had just been to the eye doctor > for a regular checkup 2 weeks prior!) I was told that I had > Papilledema, the optic nerves were swollen and the pressure in my > eyes was over 30! The Ophthalmologist had a suspicion and sent me to > a Neurologist. After several MRIs, spinals, blood tests, and trips > to the Rheumatologist to rule out lupus, he sent me in for a ct scan > to rule out sarc. Swollen lymph nodes and clear lungs were what he > saw, so he sent me in for a biopsy. I was dx late October. my > Neurologist had only one other case like mine, and she responded > very well to treatment so he was very hopeful that all would go > well. I started out on Prednisone, but I ended up with giant hives > for almost 3 weeks. Then we tried Methylprednisolone, it seemed to > help for a while then the effects of the steroid were worse then the > disease. I was also taking Istalol drops every night for my eyes. My > hearing has improved (although there are still a hundred crickets), > the smell is gone and the taste still comes and goes, I've gained 30 > pounds, lost a lot of hair, I'm completely exhausted, have weird > bruises in the strangest places, don't sleep, have horrible sweats, > and the depression and moodiness are unbelievable. I feel like I've > lost a whole year of my life and oh yeah I turned 40 this year, my > oldest son has left to be on his own and my youngest son is a senior > and never home anymore! Some of my friends have " cut me loose " > because I'm too much " drama " , I'm alone a lot and so I guess the > depression has a tight hold on me! Anyone who know me knows that I > am not drama, I'm very private so I don't share my aches and pains > with anyone, but nor do I want to be around a lot of people cause > some times its really hard not to show the pain! I just came off all > the medication this August and I was so excited to get back to my > normal life!! Wow, what a slap, when as I was weaning off the meds > my muscles and joints started to hurt all the time. I'd wake up in > the middle of the night crying because I hurt so badly. It's > starting to get a little better, but now my eyes are acting up > again… I'm just really scared about what to expect next!! Whenever I > get a cough, I'm terrified that it's affecting my lungs! Well > enough rambling… I only allow myself a few minutes to feel sorry! > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Here here!! Deb P > Hi everyone. I'm fairly new to this group, but I've been reading > your messages. My heart really goes out to all; some of your stories > scare the life out of me! If you don't mind, I need to ramble my > saga to someone. I really have a lot to say and I feel very > unsupported. In many ways to me, if you don't have something > visibly wrong with you or you haven't lost your hair due to chemo, > people have a hard time understanding that there is something wrong! > In April of '05 I wasn't feeling myself but couldn't put a finger on > what was wrong; my family doctor had said that he thought maybe I > needed some counseling or an anti-depressant. In May, I had lost > 75% of my hearing, my smell completely, and my taste started to come > and go. My doctor put me on zyrtek, as he was convinced this was all > due to allergies and that I needed tubes in my ears. I was getting > very frustrated and the million crickets singing in my ears were > about to drive me insane! One night I woke up with my eyes bulging > and so sensitive to any light!! (I had just been to the eye doctor > for a regular checkup 2 weeks prior!) I was told that I had > Papilledema, the optic nerves were swollen and the pressure in my > eyes was over 30! The Ophthalmologist had a suspicion and sent me to > a Neurologist. After several MRIs, spinals, blood tests, and trips > to the Rheumatologist to rule out lupus, he sent me in for a ct scan > to rule out sarc. Swollen lymph nodes and clear lungs were what he > saw, so he sent me in for a biopsy. I was dx late October. my > Neurologist had only one other case like mine, and she responded > very well to treatment so he was very hopeful that all would go > well. I started out on Prednisone, but I ended up with giant hives > for almost 3 weeks. Then we tried Methylprednisolone, it seemed to > help for a while then the effects of the steroid were worse then the > disease. I was also taking Istalol drops every night for my eyes. My > hearing has improved (although there are still a hundred crickets), > the smell is gone and the taste still comes and goes, I've gained 30 > pounds, lost a lot of hair, I'm completely exhausted, have weird > bruises in the strangest places, don't sleep, have horrible sweats, > and the depression and moodiness are unbelievable. I feel like I've > lost a whole year of my life and oh yeah I turned 40 this year, my > oldest son has left to be on his own and my youngest son is a senior > and never home anymore! Some of my friends have " cut me loose " > because I'm too much " drama " , I'm alone a lot and so I guess the > depression has a tight hold on me! Anyone who know me knows that I > am not drama, I'm very private so I don't share my aches and pains > with anyone, but nor do I want to be around a lot of people cause > some times its really hard not to show the pain! I just came off all > the medication this August and I was so excited to get back to my > normal life!! Wow, what a slap, when as I was weaning off the meds > my muscles and joints started to hurt all the time. I'd wake up in > the middle of the night crying because I hurt so badly. It's > starting to get a little better, but now my eyes are acting up > again… I'm just really scared about what to expect next!! Whenever I > get a cough, I'm terrified that it's affecting my lungs! Well > enough rambling… I only allow myself a few minutes to feel sorry! > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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