what do you do when your scared?

[sikalot]

its me again. i am going through a weird time again....my blood pressure has been kind of low since sunday. even when i get up and walk around it doesnt increase much its about 98/55 its just weird because last week it was high 155/97 which never happens.

it scares me because i already have an abnormality in my brain which could be an old stroke and i dont want low blood pressure to cause something like that.

i know a lot of people on here have a hard time with doctors not knwing what to do or not taking their symptoms seriously so my question is “what do you do when you have a problem and your scared”

my doctors dont know what to make of everything and just tell me they dont know why this is happening and Er docs tell me i am going crazy. and i dont go to my special medical team (neuro/internist/opth/rhumy/id/hemo) until late july and its 4 hrs away and out of the question money wise

there is something not right with my body i am scared when weird things like this happen because i dont know why its happening or what effect its taking on my body

i am scared and feel i am on a dead end road or the best way to discribe it would be as if i was in had been shot in public and everyone including police officers are just walking past me as if there is nothing they can do to help me so they just let me be

i am scared and alone

[Linda196]

I know that you are scared, but here, at least emotionally, you are never alone, as our Poochie says and we all agree!

The way you put it, "being shot in a public place and people walking around you" is so appropriate...I'm sure there have been times when every one of us has wanted to (or actually did) stand up and shout "I'm here and I'm SICK! Look at ME!"

I'm afraid we can't help with the low BP, or whatever other physical symptoms are worrisome at any given momnet, but if it helps at all, you can always pour out your feelings here, and someone will be along with a shoulder and a virtual hug (((((HUGZ)))))

One thing I can mention about the low BP..as long as you are still going to the bathroom, it means your kidneys are getting enough blood flow, and since the brain survives with less than the kidneys, your brain is protected.

[lesmom]

You asked what I do when I'm scared- I pray and I ask my good friend to pray. She has Fibromyalgia so she understands pain. I know we probably have a lot of different faiths in this forum. I am a Christian and I've learned to rely on my faith much more as I deal with everything. God has seen me through a lot. I'm also glad to have found this site- wow is it good to have people and a connection who understand.
I hope that you can find something to hand onto too. Please know that you are not alone.

Hugs
Leslie

[missyb]

I believe most of us here have probably had such strange symptoms and painful nights we lay awake and wonder if we fall asleep will we even wake up.  I was so misdiagnosed and had also been treated like a nut job for so long that when a Dr is even nice to me today, I am shocked. It was emotionally abusive really, as the way I was treated still makes me feel embarrased. Before the huge flare at age 37, I had rarely even went to a Dr. Even though I had a lot of joint pain, mouth ulcers, skin rashes and some intestinal issues, it all seemed normal to me. I rarely got sick, never complained, always thought Dr's were there to help people, not make them feel worse about themselves. I never dreamed that not only would I not be taken seriously, that I would be humiliated on top of it. It's shameful what they do sometimes.
Re the ER Dr: I discovered that the Dr's who are rude like that, and want to blame the patient for having "anxiety" or mental issues, are the ones who don't know what they are doing but they have to be the one with all the answers and can't admit they just do not know what is wrong. They are generally "blame shifters" probably in every aspect of their life, not just their medical careers.
It *used* to be that ER Dr's had to have a LOT of experience to work there b/c they needed to know a wide variety of things to acutally help people, it *used* to be an area of esteem. Now with the doc in a box medical mentality, it's all about making sure a person is just stable enough to wait and see their primary care.  ER Dr's nowadays, probably like that they are never ultimately responsible for a person, and never have to see them again, and have a limited time of contact with you. I tell my husband that unless I am in a car crash or otherwise unconscious, nothing I am experiencing will bring me to an ER

It took over 6 years for my diagnosis, and I know that is about average, just keep in mind that a whole bunch of others have made it through and you will too.  Just keep telling yourself that you just have to get through the next few weeks til you see the rheum. and nothing that is going to kill you is going to happen between now and then.
I also agree with Lesmom, that prayer will keep you centered. I have to add that recently I have often given a prayer of thanks for Sjogren's. My next door neighbor Katie is only 26yrs old and has a very rare aggressive melanoma which spread first to her lymph system, and now in in ICU after having 3 tumors removed from her lungs. She has a 3 yr old and 8 month old, and is fighting everyday just to stay alive to see her babies. If you think you are scared (And I know you do, as I mentioned I have been scared like you too, I am not belittling you!), now, can you imagine how this young woman feels? I think of her and her fight and it really puts this into perspective. I used to bristle at the mention of Sjogren's being a "disease of inconvienience"
But I guess when I look at it from Katie's perspective, and what she is trying to overcome, she would gladly accept the burden of stiff joints and all the other pains of Sjogren's to know she is not going to die. A friend  going though some other struggles told  me once that someone said "if we all threw our problems out on a big table, 99% percent of us would glady take our own problems back".

[Poochie]

Hi Me Again,
It's terrible being scared and alone, I know.  It took me over 30 yrs to find a doctor that knew what was wrong with me and didn't make me feel like a freak of nature. 

I'm not great at giving advice to someone but perhaps if you started a journal and kept track of what you are doing, when something happens.  Low blood pressure is really weird with the way your body reacts to it.  You stand up and the rest of your body follows at it's own pace.  Then when you try to walk you aren't sure your feet are touching the floor. 

Please be careful and write all of this down, so that when you do get to see your "team" you can let them know what's been going on.  It sure helped me.

We don't mind listening when you are afraid or concerned.  That's what is so great about this site.  As Linda mentioned, I came up with the "When you're here, you're never alone!" about 5 yrs. ago when I first found this site.

Please keep us updated on how you are feeling.  We will be here when you need us.

Hugs, Pooh

[sleepy]

You are not alone, we are here with you. When I am scared, I pray. Most of my friends do not understand Sjogren's, we look fine right? URG. 

There is a song by Point of Grace, "you will never walk alone", it is very comforting.

we are in this together, together we are strong

[eyeamdry]

Sikalot, I agree with what the others say, but what about a cardiologist?  Have you seen one?  You are talking about your heart/blood pressure.  That's where I would go and find out what (if anything) was going on there.  Good luck.  Lucy

[Crabcakes]

I felt and feel scared too. From visiting this forum, I have learned a lot and found some very strong people. Right now when I suffer from strange symptoms, I just endure, as my internist knows nothing. Just waiting for the rheumie appt. (I'm sure veryone is sick of me saying that). When I get scared, I just distract myself and try to think of other things. Best of luck to you!

[lynnmarie219]

It is perfectly "normal" to feel afraid of the unknown but as the others have said...you are not alone when you are here!

Everyone who comes here can relate to what you are feeling and saying. Our situations will not be the same...our stories and lives are very different...but we can all understand because in one form or another...we have been there!

Hang in there and good luck at your appt. at the end of this month. Make sure you jot down all of your questions, concerns, and facts about your symptoms as was also suggested to give your docs more information about what is going on within your body.

[Jules48cats]

Hello
Aren't you glad to have found a place where you are understood.  We all feel alone and frightened at one time or another.   Sometimes I feel like all hope is gone.  But then something comes along that makes me laugh and I go on.  I agree with eyeamdry.  It sounds like you need to see a cardiologist.  If you have a Doctor that you trust, ask him to recommend a good cardiologist.   I will keep you in my thoughts for now. 
I think one of the scariest things about this, is that when you get a new symptom, you are never sure which Dr to call.  I am lucky I guess, Because I have a Rhuemy that I have been seeing since I got RA in 1987, and he is very good about referring me when I need it. 
Jules

[irish]

I know that everyone has done a good job answering your thread. Fear is a common denominator. It should be noted that people with sjogrens don't die frequently from the disease. It makes us bloody miserable at times though. I don't know the history of your stroke, but I was very heartened by the information that Linda posted.

I am 66 and have had sjogrens and several other autoimmune diseases since aboaut age 20. I lived with low blood pressure most of my life. Mine was always so low during pregnancy that the doctors watched it closely. I don't know if you eat salt or if you cut it out of your diet. A neighbor of mine was walking around in almost fainting condition for a long time. She finally went to the doc who questioned her and found out that she ate very little salt.

Her parents were up in years,lol, when they had her and her Dad had heart problems for most of her life. She was raised on restricted salt diet and did not eat enough. After she upped her salt intake she went back to normal.

Remember that our blood pressure does flucuate from one minute to the next(literally) and lots of things can affect it. Have your had your potassium checked lately. If you have low potassium it is not uncommon to have low sodium as these 2 hang out together keeping our body in sync. If you continue to have problems I would not hesitate to ask your GP to refer you to a cardiologist for assessment.

Come and vent and you will get support here. I am one of those Christians who depends a lot on my faith. I also have found that talk radio keeps me from being lonely and I find so many interesting and educational programs. Loneliness is no fun and there is not one person on earth who doesn't suffer from it at one time or another. If you find that you have a hard time being positive and are sad much of the time it might be wise to talk with a psychologist. Many of the people with sjogrens take antidepressants as depression seems to run with chronic diseases.

I was one of those people who suffered greatly for many years before being diagnosed with sjogresn.(2003) EVen then I had to wait 3 more years to get the rest of my diagnosis. I have been verbally abused, ignored and not treated for my AI disease when my blood work and symptoms were right on the money for them. There is nothing we can do after this has happened to us. We can, however, choose to let it go and not dwell on it. Believe me this takes a long time as forgiving is not easy.

I guess, as a nurse, I try to keep in mind all the sick people I have cared for over the years who didn't have the chance to get treatment or had treatment failure. I am not well, but I can still have good days, still do many things at times and have the ability to do what I choose to do when I feel up to it. I enjoy the sunsets, the birds, all the little things that I took more for granted when I was not so ill. I call my grandkids by phone to tell them to look out and see the rainbow or the harvest moon. Life can be so awesome at times. The bad times we always have with us, it is what we do with them that makes a difference in our life and the lives of those around us. Hang in there. Irish

[JenJen]

Irish---

What a nice post.

I am having a feeling blue day.  The thing I am most scared about is what will progress next, and how bad will it get.  I have young girls to raise and just pray every day that I can stay well enough to be a "good" Mom and send them on their way as best I can.  But I find dwelling on that--the what if's---just makes me feel worse and more anxious.  I have to "Let go & Let God" as they say, and live one day at a time.  I try to appreciate the little things, like Irish so eloquently said, and also give myself permission to realize I can't do everything I once did before AI invaded my life. That is easier said than done some days, but it is worth it to try.  Depression and anxiety feeds on itself, I know.

Some things that have helped me deal with new symptoms (and no good answers yet) have been finally getting on an antidepressant (and not feeling guilty about it), finding a good counselor, reading positive books about mindfulness and the power of a positive attitude (I'm not really Buddhist, but I like their philosophy--check out Pema Chogren especially.)  Meditation by concentrating on my breathing and progressive muscle relaxation has helped me when I start feeling like I'm ramping up my anxiety.

Hugs to all who are feeling blue and scared today. Hugs to everyone else too! 

[irish]

One thing is for sure. When you have gotten your children raised it becomes a little easier to let things go and just go with the flow. I remember not feeling well and having my hubby gone much of the week of several weeks at a time. This really was hard on me cause it puts a wife in charge of EVERTHING! Kids, dog, hobby farm animals, fences, snow shoveling, sick kids, flat tires, weedy gardens, canning and freezing, shopping, kids, washing clothes, cooking, cleaning house. I bet I have forgotten more than I wrote down!!!

It is the pressure of having to do all these things and feeling we have to do them "right" whatever that is, that just runs us down. Then we have PMS plus our autoimmune that we don't know we have---just know we always feel rotten and push to keep going. That in itself makes us more anxious and depressed and we lose sleep and worry. To this day I am amazed that I lived through all the stuff I did cause there were days I thought I would literally drop dead in my tracks. Just goes to show you how much the human spirit can tolerate and how much loving and supporting families helps us in more ways than we realize. I would bet that many of us would have sat down and given up if not for our families.

Life is not fair, but it is always interesting.Irish

[salsen]

I don't like the feeling of being scared and afraid so for me the blessing in this is that it makes me want to take action.  I thank the good Lord everyday that I live in a time when the internet is so readily available which puts knowledge in my hand instantly.  For me knowing what the problem is and educating myself about it helps to calm the fears and gives me some sense of control over the situation.  I am not really sure if I would be able to handle the chronic pain so well if I were not able to connect to others so easily.  Fear can be debilitating or it can make you a stronger person.  Was it Roosevelt who said "The only thing we have to fear is fear itself."   What a profound statement. 

I have a close friend who always ask me, " How can you take your problems so calmly and even laugh about all these issues?  I would go nuts!"  For me I accepted early on that for whatever reason this is what my life is suppose to be at this stage.  Some days I wonder what the good Lord is thinking when I am really off balance and hurting.  Is it some deep lesson I am suppose to be learning or is he just picking at me LOL.  I do know all of this has taught me to be a more compassionate person and to take life a little less seriously about how others think or act. 

Of  course when some moments get a little too overwhelming. I come here for a visit. Usually someone will give me serious compassionate advise while another will help me look at the lighter side.  I always end up with a smile and a feeling of being listened to.  Nothing will help take the fear away more than knowing your problems are being heard by someone else.  For me it doesn't really matter if they can help change or make things better, just being heard by someone else is the best medicine for the day.

[gsmraxe]

May 15th of this year I found out I have Medullary Thyroid cancer and  I had a total thyroidectomy June 24th.  Let me tell you, I've never been so scared in my entire life.  From 5-15 to 6-24 I was terrified, I had never had any surgery and the thought of having cancer scared me (still does).  My SJS flared up and my acne came back for a bit.  The only thing I could think to do was to try to keep life as "normal" as I could.  In the evenings, I would play a favorite video game, it seemed to take the edge off of my fears for at least a few hours and make me feel a little better.  Though "cancer" consumed my thoughts, I tried to keep everything in a positive light and not let it keep me awake at night.  It didn't always work, but mostly it did.

I hope you can find the "mental oasis" you need to help you.