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Feeling Frustrated and Blue- What to do?

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Rheumatoid Arthritis
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Posted 3/27/2016 12:11 PM (GMT 0)
I have so many diseases, but I figure I would just stick it here. I have come to this forum for a support group, and to vent. I'm looking for people who are in similar situations like me; who can relate to me. As some days I feel like nobody really understands what I am going through. Friends/people will say if I only did xyz, everything will go away. They just don't understand because they are not in our shoes or in our situations. I have reached my wits end. I am only a 27 year old male and already in a bad state. In my childhood in the early 90's I had severe asthma and allergies. This was the beginning of a bad start. The doctors all told me I would outgrow it. But I never really outgrew it. I am able to control it though thankfully. At 17 I got diagnosed with Crohns disease. This was another blow to my health. And now, just 1.5 years ago, I was diagnosed with rheumatoid arthritis. This is in addition to psoriasis.

I am in daily pain, whether it's the joints in my knees, arthritis pain in my neck, (as a result of a car accident that wasn't my fault) pain in the joints of my elbows, or my Crohns stomach pain. Some days are better than others. Some days I can get out of bed. Others I have to stay in bed because I am so tired or in pain. I'm really not trying to sound pessimistic or feeling sorry for myself. I hope I don't come off that way, I'm just trying to give a background of my situation. Don't get me wrong, I do have somewhat of a life. I do get to hang out with friends. I do get to go out sometimes. It's not all terrible and bad times. There are plenty of fun, good times that I get to have, and I have some great friends to share it with.

What has been making me so blue and sad lately is I am coming to the realization that I probably will never be able to have a normal life. No getting married. No having children. (I love my nieces and nephews) No being able to get a normal job. No going out whenever I want to. Possibly not even being able to move out of my Mother's house who takes care of me on really bad days. All because of my disability. It's the cold hard truth. I have been supporting myself off of playing casino games professionally, such as poker, and counting cards at Blackjack (Not illegal). Some of you may gasp at this idea, but it has actually worked out quite well. The Casino is really the only place I ever really felt that I belonged; like I felt I was meant to be there. I have built a good nest egg for myself, I don't have a boss, I am able to set my own hours, and I decide when I want to work. I am on Cobra for health insurance which isn't cheap, but at least it's good health insurance. Unfortunately it expires in 2018, and I don't know what I'm going to do, but I will cross that bridge when I have to.

I am (obviously) on a myriad of medications. Hydrocodone, others for anxiety and sleep, Remicade, a list way too long to keep going. Thankfully I don't really have any depression. I have good friends, and I have good people surrounding me. This is a real blessing.

My Rheumatologist wants to switch me from Remicade, which doesn't seem to do anything for my arthritis, but keeps my Crohns at bay, and put me on Symponi. I'm concerned because I just don't want to solve my arthritis problems, and trade it in for my Crohns. I have tried Asacol which was a complete disaster that ended up putting me in the hospital. So my main drugs to keep inflammation at bay have been Remicade since 2007. But it does nothing for the psoriasis and nothing for the arthritis, unfortunately. My two major problems are the arthritis, and the crohns.

I don't know what to do anymore or where the future will take me. Does anyone have any suggestions about medications? Does anyone have any suggestions on activities to do that can stop me from feeling so blue. I know there are many of you out there who are in the same position I am, and together I hope we can help each other through these terrible chronic illnesses.

Wishing all of you well.

StopthePain
Posted 3/27/2016 9:29 PM (GMT 0)
I get down in the dumps too because this is my life pretty much.

On my lowest days I try to find something to distract me. Crafts, books, gaming, tv, or playing with my cat. I do see a psychologist and take an antidepressant.

We're not dealt the greatest hand, but we can still win if our bluff is strong. 😆
Posted 3/28/2016 3:53 AM (GMT 0)
I was thinking about starting Xeljanz
Posted 3/28/2016 11:12 PM (GMT 0)
I haven't tried that.
Posted 3/31/2016 6:50 AM (GMT 0)
STP,
Have you tried Humira? It does seem the medications do quit working after about five years, but switching can restart the clock and may work for both the chrons and RA.
I also wonder about whether or not a smokey casino could be problematic for your asthma?
My suggestion would be to begin to think long term, as new medications are being developed so quickly, and as a young guy, having some money saved up is something to be proud of.
If you want a family, there's no reason you shouldn't. Your life won't ever be normal. ( Boy did I struggle with that realization!) But you can probably accomplish a lot if you begin to set some long term goals. There is health care available to you that costs less than cobra under affordable care act. You might get an insurance agent to help you navigate through the registration.
Good luck, and keep those aspirations going!
Beth
Posted 4/13/2016 8:23 AM (GMT 0)
Thanks for all the responses and I'm glad to know I am not alone.

Beth,
I considered Humira but I have terrible needlephobia and the thought of injecting myself every two weeks just would be impossible. Also my asthma is at bay, so the smoke in casinos does not bother me. Not to mention I stay away from tables with players who smoke, and most poker rooms are also non-smoking to boot.

What you said about not having a normal life is kind of what I am coming to realize now, which is why I am feeling blue. I wouldn't say depressed, I'm not depressed, but definitely a feeling of sadness. My Cobra, which is very good insurance has $1100 deductible (payed by Remistart) and a $725 copay a month. I'm totally unfamiliar with the ACA, but am I paying too much? I also wonder if a life partner would ever really want to be with someone like me. I have had relationships, but nothing really ever too serious. Who would want to be with someone who is so sick all the time? Also, I actually enjoy being alone sometimes too and just laying in bed. I'm just not sure a life partner would be for me. I don't know, I have so many questions and uncertainties and not enough answers that it scares me. As far as the children go, I would hate to pass my horrible diseases onto my kids. I probably could never forgive myself if I did that, which is why I think I could never have kids which is a depressing thought for me.
Posted 4/13/2016 6:02 PM (GMT 0)
Have you applied for SSD?

Because of my multiple issues I receive it. No deductible, reduced copays....
Doctors' visits range from $10-$45.
Posted 4/14/2016 2:50 AM (GMT 0)
Hey,
I just joined up, but I've been dealing with reactive arthritis pain for about 8 months now and have also felt very alone. STP, I have a somewhat similar story....I was diagnosed with Nephrotic Syndrome as a kid, then struggled with a debilitating case of Mono for a year when I was 24. Now at 28, I've been diagnosed with Reactive Arthritis and Fibromyalgia in addition to Depression and Anxiety (which is made worse from the pain and isolation). I haven't been able to work or go out much and have always been an extrovert. I was so happy the other day because we were able to get a wheelchair and my husband pushed me on the nearby biketrail.

I'm currently on Humira (I just had my second shot) and it really isn't too terrible. Thankfully, it looks like a giant pen and you don't see the needle. Prime Therapeutics has a video tutorial that you can watch - I'm super squeamish and managed to make it through. I think your rheumatologist can also administer it if you would prefer that. And I completely understand about being concerned about having kids later on. My Mom has a lot of autoimmune diseases too (Sjogren's, RA, Lupus, Raynoud's) and both sides of my family have a history of cancer. My husband's side also has some health issues, so between the two of us, the gene pool isn't looking too hot.

My biggest concern lately has been that I'm taking a ton of medications and I don't want them to interact with each other. I'm on steroids and with the fibromyalgia sleeping has become somewhat nonexistent at times, which was how I would cope with the arthritis pain. I've tried taking benadryl, melatonin, and promethazine to fall asleep (none of which have helped consistently).

In addition to medication, I've tried a ton of other types of treatments. I'm currently in physical therapy to try to increase my range of motion and stamina. I've also included a wide range of vitamins and supplements, heating pads, ice packs, paraffin wax, plant based diets, meditation, coconut oil, epsom salt soaks, essential oils, and the occasional glass of wine. I am also seeing a therapist regularly to help me monitor my moods.

Is there anything else that I can try?? I even have to modify every day activities - like folding clothes on the bed so that I can sit and fold, or ordering nonperishable food from Amazon so I don't have to go to the grocery store as often. My husband is currently in school and is still trying to take care of me and the housework and errands that I can't manage.

Post Edited (Alicia) : 4/13/2016 9:01:42 PM (GMT-6)

Posted 4/14/2016 3:43 AM (GMT 0)
Alicia, did you know melatonin is bad for people with autoimmune diseases? It can trigger flares.
Posted 4/26/2016 8:25 PM (GMT 0)
Alicia, just curious, how did you meet your husband? Is he supportive? Is he bothered by your condition?
Posted 4/28/2016 7:47 AM (GMT 0)
I have to say the conditions of what I have, I have come to terms with. I'm trying to focus one day at a time and not fret too much into the future because there really isn't anything I can do to change it anyway. What will become, will become. In the meantime I will live life to the best ability, and pray I can come out of this a stronger person. It's not like I have much choice in the matter.
Posted 5/4/2016 3:00 PM (GMT 0)
STP, I feel your concerns, I'm 22 and worry about what my future will look like.. It can be a scary thought wondering how normal your life will be while dealing with these kind of health issues. I wish you all the best.

Rachael
Posted 5/6/2016 2:57 PM (GMT 0)
Hey,

Hang in there, it can be devastating some days when you think about all the things you can't do that everyone else can. But there are good days too :) I don't know where everyone is based, but in the UK there are support groups and things that can help on bad days. I called one of them today looking for advice on travelling with RA. It always seems like there are a million hurdles for us to clear before managing to do things that other people wouldn't think twice about, but with enough forward planning, most things can be still be done with a few alterations. Try to find something you enjoy and throw yourself into it. I'm doing that with diving, which sometimes leaves me crippled for weeks, but worth doing to still experience something I enjoy. Hope this helps even in a small way. You're not alone!

Best wishes :)
Posted 5/12/2016 1:42 AM (GMT 0)
Hang in there STP. Im 47 but I first developed RA at 23 and was finally diagnosed at 26. One thing that has helped me over the years is to remember that I have to take life as it comes. If I spent time dwelling on the future or the past I am P&&#^g all over today. Even when today is a "bad" day I need to be present in it. If that makes sense?

When I was diagnosed and began thinking about it I was utterly devastated. I had always been a physical guy, played sports, worked out, I had to accept that those days were likely going to have to change and I could either change with them or I could be miserable. I have done my share of both.

I have been on almost all the various biologics and had some work well like Enbrel and others were horrible for me like Xeljanz. Had a really bad allergic reaction to it and had to stop taking it. Now, I am taking methotrexate and pain meds. I develop infections over time on biologics so the long acting ones like Remicade are out of the question for me. I have prednizone but I have taken that in the past and honestly it was another horrible drug for me. I would rather suffer than take it the side effects are so bad over time.

Another thing is that its pretty expected to deal with depression with chronic disease. I've tried a few anti depressants over the years as well but they just made me feel numb and I hated that feeling.

One sure fire way for me to get out of the blues is to get out of myself. Whether that means volunteering at the local VA hospital, school or if I can't do that then doing something around the house it always helps to get me thinking about things other than me and my disease. Even posting here and answering questions for people is a way to do it when I'm hurting.

I hope you are feeling better STP and welcome aboard. Sounds like your chosen profession is a fun one :)
Posted 8/9/2016 5:26 AM (GMT 0)
When it is approved by the FDA and is covered by insurance I think most here would certainly be willing to give stem cell therapy a try especially since now most of the moral issues that were initially repugnant are no longer involved. Until then I think the vast majority of us are going to have to wait and see how stem cell therapy shakes out.

It is certainly worth paying attention to that is for sure.

/www.statnews.com/2016/02/08/fda-crackdown-stem-cell-clinics/

Post Edited (Don_D) : 8/8/2016 11:49:11 PM (GMT-6)

Posted 8/10/2016 10:01 PM (GMT 0)
Since you have RA and psoriasis, has anyone considered the fact that you might actually have Psoriatic Arthritis? (PsA) The meds do cross over, but there are different meds you might be able to try. If you were re-diagnosed.

As for being afraid of needles, you need to get over that! I just think about how much better I am going to feel, and the shot doesn't hurt at all. I was on Kineret, a daily needle for 5 years, in combo with mthx, a weekly needle, and those were the best years of my life, in terms of the RA being 100% under control.

I do understand the feeling of helplessness that comes from always being in pain and sick. That is why, in my opinion, you do need to try some other meds. You might not be on the best meds for what you have! Whether it is RA and Crohn's and psoriasis or other things.

One thing that helped me through the last 18 months of med failure, is my faith in God. I also have various hobbies, and I went back to school and got my MDiv when I was on a good med combo, and now I can go on-line and help people as a pastor - that makes me feel useful.

I was more or less normal till my late 30's when I had a bad car accident and whiplash injury, which affects me to this day, no matter what I do. Then I got asthma, then allergy shots, and then RA, plus Sjogren's and eventually fibromyalgia. But I have tasks I try to do daily, which I enjoy, like reading the Bible, and playing flute if I am able, as well as doing those important stretches and riding a bicycle.

Structure is really important for me, and you might want to see if it helps you. As for Xeljanz, besides giving me flares in my ankles, which I have never had before or after, it basically did not work. I was pulled off of it after 5 months. But you should try it, we are all different, and it may help you. But don't limit yourself to oral meds. So many of the biologics come in needles and infusions and you might need to come to grips that stopping the disease is more important than a fear of needles.
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