Hi Lorna,

My therapist is amazing and has been a vital part of my mental, emotional, and physical health. We don't discuss all medical aspects of the disease, but we do discuss how I react to the disease, how my family and friends have dealt with it, how it impacts my life, my fears, my frustrations, my plans for the future, and how I move on and begin NOT defining myself based on it.

She is not a stranger at this point, and she doesn't need to read a Behcet's book to help me (although she has researched it online). She doesn't help me make medical decisions or sort through autoimmune disease data, but she does enable me to have the strength and calmness to make decisions for myself. It is a long process, and she is there for the ups and downs of the flares...and anything else going on in my life! She is helping me turn hostility and anxiety into acceptance. Her gentle guidance has been a blessing.

I also attended a mindfulness-based stress reduction (MBSR) clinic through the UCSD psych program. It has helped me relate to myself differently (not just sick, broken Susan who had to leave her job), and has also helped to reduce stress and anxiety. http://health.ucsd.edu/specialties/psych/mindfulness/mbsr/

As a side note, I've been able to cut my antidepressants down to 1/4 dose (with the guidance of a psychiatrist, of course), and I no longer take anti-anxiety meds. :) I believe my therapist's guidance, the techniques I've learned at MBSR, the colchicine, and the big lifestyle changes I've made are all the reasons why I haven't haven't had a flare in 5 months, a new record. :)

I wish you the best!
Susan

Thanks Metastabl,
It is great to find you are finding the therapist such a positive influence on your outlook in life.
Do not for a minute assume l am seeing her to get any medical help regarding this disease and its treatment. I already have this side covered. My reasons are purely to help me cope with so many changes to my life. I am very pleased she has suggested she would like to do some reading in regards to this disease. I feel that making more people aware of all auto immune diseases is a step in the right direction. Who knows the right person that becomes aware of these diseases may the next person to put money towards more research....
The last two years have been a roller coaster ride involving one medical problem after another. This as you now is very hard to accept.
I am hoping the stranger will become a very important part of my mental and emotional healing and lead me towards a less anxious feeling every time l think of what could happen.
My next appointment is in two weeks and l feel very comfortable talking through my issues knowing it is not going outside the room we will be in.
So glad you therapy has helped you so much, it really pleasing to know l have made a good choice in doing this.
Thank you for your reply.
Lorna.k.c

I hope your session goes well! Sometimes it's hard to find the right fit, so don't worry if you need to try several more sessions or try someone new. :)

My therapist has also worked with cancer patients, fibromyalgia patients, etc., and I find her to be quite insightful, esp for women's issues. So I prescribe every-other-week sessions for myself. :)

Good luck!
Susan

Hi Lorna :),
I am pretty much sure that seeing a therapist is a good thing. I am huge believer in psychology. I think that you have nothing to lose after all. Therapists should be able to teach you relaxation methods and that can be an asset in our cases. Plus, it always feels good to talk to someone. Being a stranger to you, maybe, somehow, you would feel better to talking to them. I haven't been to a therapist yet, but I am thinking about visiting one as soon as possible. However, one of my best friend is seeing a psychologist and he told me that it really helps a lot. I suggest that you give yourself sometime to get used to going there and then judge yourself. Anyway, wish you all the best.

Love and kisses.

Hello Susan and Astro,

Thank you for your replies. It is great to hear positive re- nforcment of my choice. I am hoping this therapist will bring me to greater acceptance of my situation, and turn the anxious feelings into something a little easier to live with.
As for relaxation methods,she has suggested yoga and mediatation. Yoga l think is not for me... Meditation l have already tried and all it did for me was send me to sleep. I awoke when my daughter poked me awake and told me to stop snoring in class.
I agree talking to a qualified stranger is easier and l feel like less of a burden when l am not unloading on the people l love. They find the whole situation very distressing at times.
I will give these sessions the time l need to get my emotional side back to some better place. My GP is very happy to extend the
sessions to another six if l feel l need the exrtra sessions.

Thank you
Lorna

Hi Lorna,

Have you ever tried gentle yoga or restorative yoga? I used to do that CorePower kind of thing, and I'm over it. I'm trying more relaxation-type yoga. My body needs more gentle movement now.

Also, there are many types of meditation, and some make me less likely to sleep than others (sitting meditation, walking meditation, loving kindness, etc). But they all give me positive benefit. Different times of day and different lengths of mediation may work better for you. Plus, meditation in a group setting is nice, and I'm even less likely to snore. :) Some yoga studios offer group meditation classes. Still looking for my right fit...

Take care,
Susan

I enjoyed reading everyone's experience on how they feel about Behcets and how they have found answers that work for each of you. When I finally had my Diagnosis I was so happy! Then after a couple of months reading on it online and a book. Plus, I joined an online Behcets Group and then I read over 415 clinical studies.. I figured out this disease was not that great of a diagnoses and all those years of battling to find out what was going on it almost seemed better not knowing. (Ignorance was bliss?)
The next thing I did is asked my husband if he would go,with me to see a Counselor (PHD), as I knew the road ahead was going to change our lives. Therefore, we should have the tools to deal with what was ahead for us. I learned how to read all my blood tests, Ct's and MRI's/MRA's and what to do when I had a bad flare and what medicines worked for me and those that do not help me currently..
It seemed to be proactive to understand what Chronic illness is and how it could affect a marriage and family. In the beginning it is different than after years of having it, everyone forgets that I am sick at times, as the abnormal becomes normal. Oh, she fell again, it is just a rash, oh 30 ulcers at least it was not as bad as when you had 50 the one time. There are not to many things that are big deals anymore at our home. If my eye vessels burst and one cannot see the whites of my eyes at all, my husband will say oh did you know your eyes are red today? He knows when they do that I cannot see that well. He will say you probably should not drive today you balance is really off. None of this seems to be any big deal and it is not as it is not going to hurt me long term, and I have medicine for each condition and know what to use for each thing that happens.If it does not work then I call the Specialist for what to try next or do I need a test. This is an example of my life with Behcets but most people will not have all of this maybe one thing out of all of it.
The best thing I learned was to become my own advocate and to fight for what was and is right and to go to the best doctors then things did calm down because I did not have fear anymore and I found little things that worked to make my quality of life better.. I have Neuro-Behcets and a LOT of organ involvement. The doctors that have seen me say you have the worst case of Behcets we ever have seen, yet you smile when we walk in the room and you still joke around and are not screaming, complaining or angry. They said it is probably why I am still alive after my stroke, my Aneurysm,my Pulmonary Embolism and I have nodules in my lungs, clots in my legs from the DVT (which are better after this last treatment). I have lived through it all.In June, I had the worst infection and surgery the end of August and they would not give me pain medicine for it afterwards and I could not talk. But I fought hard and I had to live in the worst pain possible until they wrote an RX for $3000.00. (she did not think we would get it but I had no choice other than to go to the hospital and that would have cost the same amount> The reason being is they would have ran all sorts of tests or keep me there and I would have been exposed to several illness and could have become very sick. I found out I have Chronic Kidney Failure this year, I read on it to find a solution and it showed up in May 2010 and not one doctor told me about it until this summer. I found only one study at first, now I have read 109 studies and it is not as rare in Behcets as Doctors think. We are isolated from a large group piecing all the information together. Behcets is different than other disease processes, we tend to not respond the same as if one had CKD from diabetes or HP. So, one cannot compare it to another disease because it is not the same. Many of our conditions are Pseudo. This even throws off the doctors. I have good news about my kidneys, I received a call today as my GFR and kidney functions improved a lot. This does not happen they said when I was told about it when they told me, so they often think the results are wrong, but they were not. I went from 30 percent function of my kidneys to 47 percent in the last 2 months and they are baffled. I guess prayer does work and having a good attitude about life in general. Also, CellCept is to help one that has internal organ involvement.
Everyone in life has their battles and I cannot say one is worse than the other. But I know this if one stops living their life because they have Behcets it will harm one more than help us. I could feel sorry for myself or be grateful that I can type, talk. walk and laugh.My eye sight is not good, but I can still see, I am grateful. I have never been on anti-depressants because I honestly have never been depressed. I have been sad about what this does to the one's I love but then I try to do my best to give love to them and encourage them too. I am not saying it easy but it is right to do and the best thing for me to do. There are no promises in this life and I want to know how I lived today that I would be happy if I died tomorrow or if my husband or children died tomorrow, I would not have any regrets.
I try hard to focus outward and to give to others and not focus inward on myself. I do this with a balance, as I need to take care of my health also. I know what I am up against and it is only one more mountain to climb and it is one step at a time. I change what I can and try to learn more. , Then everything I have endured would be worth it if I could find a cure for everyone. Or even to make someones life better makes a lot of difference to me. I would like to make a difference somehow that is long term, other than we can pick faith or fear. I hope each of you find a place of perfect peace and I am glad that each person has found a way to deal with this disease. It is not easy and it can be sad for many people, but find some joy in each day! Welcome new friends posting and those who read only and do not post, I hope one day you will I do have all the emotions the same as all people do who are sick, but I like to live in peace.
I know I may look at things differently but it is only me and I am not saying I am right, it is just how I have learned how to live my life with Behcets.
I wish each of you the very best and keep learning about this disease. It helps a lot....

I enjoyed reading everyone's post was very helpful.
Especialy Arizona39 as ive been told i have Neuro-Behcet's disease also
by my reumatologist and my neurologist, and trying to cope with the up's and downs of the disease and not knowing what to expect other than now my neuro says it is in my spine and my leg's and back are going very numb so i guess it's progressively just going to continue to parilize my body, it's very scary. Your post was very uplifting Arizona39!
And i wish you all a great day!!!!!!!!!! ~Diane~

Hi there, well, I enjoyed reading all of your posts. I really deeply respect Arizona39's attitude and uplifted spirit she has. It is very rare for someone in such a situation to be optimistic. Sadly enough, when I was first diagnosed, I was so brave and i really thought that I won't collapse, but the effect the corticosteroids had on me was unbelievable. In a couple of weeks, I turned into a suicidal person. I stopped seeing my parents, my sisters, my girlfriend, and pretty much all of my friends. I had just been awarded my Master's degree and I couldn't enjoy the result of a two-year hard work. I think if it wasn't for the steroids' mental, emotional, and psychological effects on me, I would have remained strong. The thought of getting back to steroids gives me the chills. I was really hurting everone around me when I was taken that evil medication. Anyway, I am only on 2 mg now and I am on my way to quit it as my doctor advised. Anyway, I am not advocating pessimism at all, but what I am saying is that sometimes we just can't be ourselves due to the chemical changes in our bodies, the changes caused by certain drugs. Again, hat's off to Arizona39's attitude.

Thank all of you for the kind comments. I am glad you shared about how that steroids can affect people, and it is more common then one may think. I had a bad experience due to the lack of knowledge years ago, I did not know that I could not just start and stop them whenever or even what a taper was first put on them, it really messed up my thinking because of the way I was taking them. I did not have a very good doctor at that time and I was clueless how they could hurt one at that time. I would take 40 Mg's. one day and the next day 10 Mg's. and then skip a day. Any of you that have taken them know that is not a correct dosing and very dangerous to do. I had a hard time and when I saw one of my other Specialists and told them my doses they explained to me how wrong that was and dangerous.
I think that few weeks in my life when I was taking them incorrectly I was counting marbles in the middle of the night. Almost ready for the NUT house...HA!
I decided after this first experience to learn about this disease and the medicines used. This was a while ago and one should never suddenly stop them, when they do surgery they have to know ahead of time the dosage and how long one has taken Prednisone, as one can have an adrenal crisis during surgery, the taper down has to be slow if one has been on them and I had a taper .5 mg per month to get to 7.5 Mg. due to the length of time I have been on them. I appreciate everything everyone shared as it has added to my knowledge of this disease. I read today where a upcoming "star" football player for Virginia Tech has a DX of Behcets and how this is as it is going to change his career, as they had high hopes for him. Gee, why can't we all get our names in the paper...we are all upcoming "stars" with our own talents. Some of us reached our dreams having this disease and took the approach to look at it as if one has Diabetes and has to take medicine, watch our diet and be careful what we do and battled our way to have a career. Some do not desire this and that is great, as it is reaching your own goal and doing what you can.
The kindest thing one of my clients said to me when I found out, is "You are still the SAME person, not dumber, not less in any mannerism than what you were before they had a name for your disease. I am the same person and nobody could take that from me. Things just were harder to do and I had to be more careful, read more and listen to my body. I did have limitations but all handicapped people do and some people are born with limitations, so they do not struggle with it in the same way since as they do not know what they lost. Since it is normal for many of us to feel it is a loss. There can be periods of time where one is really sick and periods of time where one does not feel ill at all. That can be a problem with some careers or being a parent, but with a good doctor and support system I have seen many people make it through those times. I hope all of you have a good doctor, if not I hope you can find one...living in an area that does not have many doctors has to be a challenge. I live in a city and I had a challenge finding a good doctor. But the best providers are the ones that admitted they do not know much but will read and learn everything they can and they called other Specialists in the country and even in the UK to find the information they needed too and they now are terrific doctors. In addition, people come here to them to be treated for Behcets. But they started not knowing...a few of them I consider friends, as I have grown with them. I feel for those of you who do not have a good support system, but with time you may have. I found some of my friends changed, as some could not handle having a friend with a chronic illness. Life has a way of exposing who is really a friend and who is not. I wish you all the best.

I started seeing a neuro psycologist even before I was diagnosed. He helped immeasurably with my acceptance of my self as I m. Part of being healthy is being emotionally healthy. Th gift of being able to watch your reactions to your illness and change them isa very good thing to give to yourself.
One caution, however. Acceptng your disease and its place in your life is NEVER finished. It is like housework, always needing to be done! But learning to enjoy the effort , delegate responsibility, and give yourself and others wiggle room goes a long way to making life less frightening.

Hello all and a big thank you for all replies.

I am seeing my therapist in a few days and fell very happy about talking to her.
The time in between seeing her has seen a few changes in treatment and a big acceptance of my changed cirumstances in my health. i am beginning methorexate at the end of the week. i have chosen the last day of my 5 day working week to begin the medication in case of any side effects it may cause.
My changes have also involved being a little kinder to myself and not going for that gym work out after work if l feel fatigued. Doing a few less laps at the pool if my knees are sore ( this is a daily normal event in my life. ) I think with this disease the abnormal becomes the normal!!!
Of the topic a bit .... Any body out there taking methotrexate ? How has it affected you and what dosage and how long have you been on it ?