Having a really hard time...

[Courtney]

First of all, I'm sorry. I really don't want to use this forum as a place to just complain and whine, because I know that there are so many people in the world going through things that are so much worse than this. But right now I'm really depressed.

I'm depressed because it doesn't seem to matter what I do, I always feel like crap. Between the hypothyroid, and the fibromyalgia, and the MC, I'm always exhausted or "brain fogged" or in pain. Or all three. Constantly. And I feel like I've tried everything and nothing is getting better. I know it takes patience and that you all say you can "get your life back." I don't really know what it's like to have a life without all this. I started getting sick when I was 17. Ten years ago. The D started at 21. I guess in some ways I'm lucky, because I can't remember feeling good. But at the same time, I'm so angry, because I've always done everything I can to take care of my health, and it hasn't made any difference. I was proactive. I went to a million different specialists, including GIs, and they all told me I was stressed or I had IBS. It took years to get a doctor who was willing to do a colonoscopy. It makes me so angry because I know that if I had been over 50, they would have taken me seriously bc they would have assumed colon cancer. So now my body is completely screwed up, and I don't really know that it is going to get any better. It sounds like, with the length of time I've been sick, it's going to take a few years. Entocort didn't work for me, and I tried Imodium, and that didn't work either.

I feel like life is completely passing me by. I know I'm not the best I can be at work, and that kills me. (And will also kill my career, if I'm not careful.) I don't feel like I can make any decisions in my professional or my personal life, because I don't know how many other ways my body is going to find to betray me. Or if I'm ever going to be able to live a somewhat normal, if GF, life. I don't know if I'm going to be like this my whole life or not.

I know I'm depressed, and I also know I'm on my own with it, because I don't want to take any more medicine. I know this post is pretty incoherent. Thank you for listening.

Love,

Courtney

[JLH]

I'm so sorry, Courtney. Having this damned disease is very depressing. It takes a long time to make progress with it. We all are or have gone through it so we understand how debilitating it is. You will progress by eliminating your intolerances. (Don't forget to check your meds and vitamins as I did.)

Hang in there. You CAN do it. It takes plenty of time.




LOVE,

[wkm62]

gone

[kate_ce1995]

Hey Courtney,

YOu have a lot going on! Trying to deal with these health issues is enough to stress us out, and feel crappy - without the disease!

Have you had your thyroid levels checked lately? Others here a way more knowledgeable about thyroid issues, but I know some have had a lot of depression like symptoms while trying to level out med doses. Some have also found they do need to take "another med", namely an antidepressant, to get over the hump. Sometimes, no matter how hard we try, we can't pull ourselves out of the pit by ourselves. I'm one of those people.

Keep posting and letting us know how you are...good, bad or indifferent. That is what we are here for. When you don't want to complain to family and friends anymore, talk to us. We've been there, done that, unfornuately.

I'm in the midst of another flare myself and it's getting to me. I'm on my way to recovery, I think, with more food eliminations, but I haven't gotten back to normal yet, and that's all I want.

Hang in there.
Katy

[tex]

Hi Courtney,

I completely agree - there's nothing at all wrong with your post. Posting our true feelings is one of the vital purposes of a board such as this, IMO, because each and every one of us can certainly empathize with your feelings - we've all been there. "Putting it into words" can often enable us to better understand where we are, and sometimes it can allow us to see ways to improve the situation. At the very least, it almost always seems to help, just to be able to express the way we really feel. I suppose it's a "civilized" equivalent of a primal scream.

I can recall many, many days when I would have loved to have "unloaded" my thoughts onto a board such as this, but unfortunately, that was long before I ever discovered the board that preceded this one, and since I had no one around me who even vaguely understood what I was going through, I had to just keep it inside, and let it gnaw on me. There's really no way to put into words, the hopeless feeling that can envelope us when we're in a mood such as that - it totally dominates our thoughts, and as you say, it affects everything we do, and everything we plan to do.

I agree with you that the longer we are sick before beginning treatment, the more difficult it is, and the longer it takes, to achieve remission. It also increases the risk of some degree of permanent damage to various organs in the body. It's often stated that it takes about 11 years to get a diagnosis of celiac disease in this country, and looking at your history, your experience pretty well substantiates that. Doctors as a group, seem to be slow learners, when it comes to their ability, (or lack of ability), to understand some of the most basic concepts, or so it seems. If just one of your doctors had demonstrated at least a minimal amount of intelligence, early on, I have no doubt that you never would have developed MC, because the treatment for celiac disease would have preempted the primary risk of developing MC. That leaves a very bad taste in my mouth, and I'm sure that virtually all of us feel that way.

All I can add is that it seems to help to take life one day at a time, and to keep searching for triggers in places where you least expect to find them, such as in meds, or supplements, or foods, that you "know" are safe. Incidentally, have you checked the Imodium that you tried, to see if it is totally free of dairy, or soy, or whatever? The world is full of "landmines", when you're intolerant of most of the foods that are available.

A lot of members who find themselves "stuck", and unable to make progress, eventually discover that the key lies in something that they ingest every day, that they "know" to be safe.

We're thinking of you, and hoping for a turnaround.

Love,
Tex

[jillian357]

Hi Courtney,

Gosh, I'm so sorry to hear you are feeling so frustrated. Believe me when I say I know how you feel.

This is a darn frustrating disease, no doubt about it. I seem to be having a difficult time with a flare now too, so I'll consider myself in good company with you.

Wayne said it perfectly...just do the best you can. That's all any of us can do. Keep your chin up, and just try to change your thinking to "baby steps".
If you look at the whole picture, your whole health history, and worry about the "what ifs" of the future it can be totally overwhelming.
Just the other day I started worrying about when I get older, will I end up in a nursing home? What will I do if they don't provide a GF diet for me? Oh no!

That was silly of me to think that way.....and I had to force myself to slow down, and just take it one day at a time.

You will get thru this, I promise. Lean on the folks here for support, they have certainly picked me up and dusted me off many times already. We all truly understand how this disease can make you feel...downright crappy sometimes.

Hang in there, k?! Hopefully you'll start feeling better VERY soon.
Love,
Jill

[Pat]

Courtney,

I am so sorry all this is happening to you. I am much older than you (almost 55) and I am not having any success. Diet has not helped and medications have not helped either. Imodium doesn't even help any more. It's hard to keep your chin up but we just have to. This forum is probably the best place to vent because most understand.

I don't have the hypothyroid problems but I recently had a patient (I am a dental hygienist) that told me they were having problems with their thyroid and they finally went to an endocrinologist ( a hormone specialist, thyroid is a hormone) and they were able to help them considerably. Maybe this would be an option for you.

Anyway, know that you are not alone. Hang in there!

Pat

[Gloria]

I hear your frustration, Courtney. Many times I want to throw my hands up in the air and give up, but that's not really an option with this disease. If I did, I would be right back where I started. All we can do is to keep at it and hope that someday we'll get better.

I tell myself that at least I'm not eating pureed food like the people in nursing homes - and they also have to wear diapers!

You are very young to be going through all of this and that's got to make it more difficult. Add your other problems to the mix and you're bound to get discouraged. That's why we're here - we've all gotten discouraged and need a pep talk sometime.

Hang in there - it's got to get better!

Gloria

[G'ma Mary]

Courtney;

You've already received lots of great advice as well as understanding from others. I really have no new advice to offer, but I want to add to the others who have told you that we do understand. You never need to feel bad for posting when you are feeling "down" - as Tex said, that's what we are here for (or at least a huge part of what we are here for!) Please be gentle with yourself. You are going through a lot right now - lots of health issues, young age and working on getting a career off the ground and the feeling that you may not be able to do that due to the health issues - a viscious cycle of problems.

I think I know how you feel about not wanting to add more meds into your system by taking an antidepressant. I'm not going to encourage you to change that, but I do want to give you permission to change your mind at any time you want to. Also, I would encourage you to find a good counselor (in some areas they are a few and far between as a "good GI", but look for one!) and talk with them on a regular basis, as well as coming here to vent whenever you need to.

Hang in there, kiddo
G'ma Mary

[angy]

Courtney hun!! i understand what your saying especially in regards to that awful sinking depression..I have not mentioned on any threads regarding my own depression, well not yet anyway...Reading your post triggered a response from me because i feel that black sinking hole quite a lot and its extremely difficult to pull yourself out of that state of mind, nothing makes you feel any better, not even gifts or surprises.. or good news..It almost feels like its a long journey and then eventually you are lifted from it for a short period of time, like a cycle if you wish!!Then you become your self again for a short time and then it hits back..
I had periods of bawling (crying) my eyes out and there was no apparent reason for me to be so sad...apart from the bad flare ups that added to my depression and made my sadness worse...Now i have never been prescribed anti depressants or discussed this with my gp...hell my gp has no clue that i get depressed because im pretty dam good at hiding it...Now the reason i say hiding it!! is because i recognise the signs and i try to use strategys to divert my ways of thinking... Now this is probably because im a mental health worker and im trained to recognise that, and i deal with people on this level every day..

Courtney i dont know if you have previously been prescribed any antidepressants or not but if you have and are taking some now, my suggestion is to see your gp and get a small increase in meds to stabilise your mood at least until you feel a little better. And if you are not on medication for depression then consider trying medication to see if this will alter your mood.

I was also like you Courtney, very active and outgoing. I didnt understand why my way of thinking had changed over the past 18 months...now i know why!! its was that dam mc taking over and only discovered the reason why i was depressed with physical symptoms when i got dx with cc.

Its very hard at times as everyone here knows..and sometimes we want to give up...but Courtney as hard as it is hun! dont let this mc win...
As others have said in this thread, we are all here for you to vent and release your anger tension and emotional state of mind. Without our family here i would certainly be at a loss..

I also suggest you take some time off work if you can with paid leave.You need to spend some healing and quality time for yourself and be able to reflect your feelings..but remember as hard as this is we are all here for you..

Please see your doctor Courtney if you can not control this depression alone...especially if you have not anyone to support you within family and social friends..

feel better soon tc xxx

[Courtney]

Well, you all made me cry again, but in a good cathartic way. It just means so much to me to know that you're here, and I'm not completely alone in this.

Thank you for telling me to be gentle with myself, and to take things one day at a time. Those are definitely things I need to hear, because I'm not good at either of those. Oddly enough, I'm very gentle with other people (most of the time ) and I would never blame anyone else for being sick, and yet I blame myself for it and beat myself up for it all the time. And I am the world's biggest list maker and organizer. Taking things one day at a time has never been my style. But I guess I should learn, especially with MC.

I suppose I'm struggling because I thought finally getting a diagnosis would result in getting better, although that's clearly flawed thinking. And I am just very angry about the set-up of the healthcare system. I don't know who's to blame--doctors, insurance companies--but there's something wrong when so many people go undiagnosed for so long. And not just with MC, but with many issues. It just seems like a crime when specialists don't have to keep up with movements in their fields. Or when the "M.D." makes a lot of docs think their learning days are done and now they just hand wisdom down from the mountain.

I will try an antidepressant, if I need to. I think I will feel better (psychologically, at least) in a few months, though. I don't think I have fullblown SAD, but I hate winter so much! I'm tired of wearing boots and sloshing around in slush everywhere! And I'm so cold all the time. It's just depressing. Only a couple more months, though.

I know I should get my thyroid checked again, but every time I do it's normal--and while I didn't have a fear of needles before the colonoscopy and all the blood draws last summer, I sure do now! (I was "stuck" 21 times in one day, and quite a few times the day after that. My blood does not come out easily ).

I should be getting my results back from Enterolab soon (milk, soy, yeast, and egg), so knowing that will help me, I think. And I'm considering doing the paleo diet (or some modified version) even if I don't have all the intolerances, at least until I'm able to achieve remission. I had also stopped keeping a food diary once I was diagnosed, but I've started it back up.

I can't thank you all enough for being here. This truly is a special group of people.

Love,

Courtney

[angy]

Your last post here sounds positive courtney...and thats a great start postive thinking is the key...

Also i would like to add to which i forgot to mention in my last thread....Have you ever tried meditation,relaxation music or guided relaxation? I am a huge meditator and this works pretty well for me and probably could for you..If you are interested in trying some meditation ill post up a few links with free stuff..

Also you mention SAD ..please check this site out for theraputic lightning bulbs...to use at home

http://www.androv-medical.com/section/3/1/

[G'ma Mary]

Angy;

I'm glad you mentioned meditation. When I was ill, it was so hard to make myself exercise - the constant need for the bathroom, and the pain, and the depression, and everything else - it's just not easy to get off the couch or out of the bed to exercise.

I found out I could do yoga in my own home (close to the bathroom and not very taxing on my depressed body). I get so-o-o much relief from that. I took classes for a short time (associated with a local church) and the instructor had 1/2 hr of yoga followed by 1/2 hr of meditation. That instructor has moved, but made all of us a DVD before she left. I think that is the best thing for me for any type of meditation.

The yoga poses increase circulation as well as flexability, the breathing associated with the poses increases circulation and oxygen to the brain and the meditation is so relaxing. If you have never done it, you might think about trying it. If you have or do do yoga, please do not stop!!!

G'ma Mary

[angy]

I totally agree gma mary, better than any form of stressful physical exercise...i have not done too much yoga but some bending and tai chi..i prefer to lie under my duvet and meditate....cos im so lazy at times and love my bed lol!!

[JoAnn]

Hi Courtney, I wish I could reach through and give you a great big hug. I hope you have a good support system. I've been blessed with a very supportive husband who has to frequently comfort and console me while I cry things out. I know somewhat what you're going through with multiple diseases. It can be so overwhelming at times. The thyroid thing is enough to make you crazy and when you add mc to it-holy cow! I really think they are all connected. Please know you are not alone in anything you are feeling or experiencing. It helps all of us to know what each other is feeling and to express it. Are you a teacher? I can't remember, but I thought you might be. I'm a teacher, and I had to take some time off to try to get myself together with all the thyroid and mc issues. I'm still a "work in progress" but the time off really helped. There's a federal law that you can take Family/Medical leave for up to 12 weeks. I had more than enough sick days to take that time off with pay. I don't know what your situation is, but that might be an option. I really rely on my religious and spiritual beliefs to get me through which includes quiet time and meditation. I want you to know that in the short time that I've been a member of this board, I have been inspired and strengthened by your posts. I have felt your optimistic and positive outlook in the things you have written. I know it's in you, but I know we all have those times when we're just sick of dealing with it all. Please know that we're here for you and you will be in my prayers. You are not alone and things will get better! JoAnn