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Over the last two months I have been dealing with some physical health issues. It started with pain in my knees and feet that continued to worsen every day and then one day I looked down and my knees and feet were completely swollen. It scared me and so I called a nurses hotline and was advised to make an emergency doctor's appointment-which I did. This is where it all started. My doctor didn't know why my knees and feet were doing that. I had no injuries. They took blood and x-rays. X-rays were normal but my blood showed a significant rise in white blood count. My doctor prescribed me a bunch of pain meds and a steroid to reduce the swelling. The swelling did reduce due to the steroid but the pain increased to the point where the pain killers weren't even taking the edge off the pain. I went back in for a scheduled re-evaluation. The doctor wanted to re-take my blood to see if the white blood count had changed and proceeded to refer me to an arthritis specialist cuz he suspected it was rheumatoid arthritis. I was shocked because I'm only 26, but he explained that it isn't the same as degenerative arthritis, you can get RA at just about any age. So he was also testing for the RA factor in my blood.

On to the arthritis specialist. I waited almost a month to get into him. During this time my pain went from bad, to worse, to unbearable. I started to see a chiropractor and a physical therapist out of desperation for any kind of help to ease my pain. After a while the pain did start to subside as did the swelling. Thank god! Finally got into the arthritis specialist and he looked me over very thorougly, did more x-rays, took lots of blood. Two days later I get a call from my specialist asking me to come in ASAP for a chest x-ray. I was pretty confused cuz I only had swelling in my knees and feet (and a little in my elbows). So I said okay, went in and got the x-rays done. They looked them over and they said that they looked fine. I was still completely confused and then he explained that my ACE levels were high which indicated something called sarcoidosis (Bernie Mac had it), an autoimmune disease, and the chest x-rays were to look at my lymph system cuz sarcoid affects the lymph system and will show up on a chest x-ray. And for some people the first symptoms of the disease are swelling and pain in the joints. But since my chest x-ray was okay they are not sure if it is that or not. So on the 17th of this month I go back in for more tests.

Then today my primary care doctor called and said that my white blood count was still very elevated and wants to send me to a blood specialist. He reassured me that it was the white blood cells that indicate most likely an allergy and not to stress too much over it. So I called the blood specialist he referred me to. So here I go with more doctors and tests.

Anyways, I've been really stressed over this. I'm trying not to think about it but it's hard not to. I'm still very unhappy at my current workplace. I miss everyone back at my old store. I still talk to them once in a while and they keep telling me that they want me to come back, which is really nice to hear. But lately I'm seriously considering going back, even though it's about an hour drive. I just really need support from people who really care about me. At my current store I've talked to a few people about it cuz well it was pretty obvious something was going on with me cuz I missed a ton of work cuz I couldn't even walk (and I work in retail) and when I did go back I worked really short shifts and would usually end up in tears cuz of the pain. But I've noticed people have been acting really weird around me at work lately. I dunno if they just don't know what to say, or what? But I feel so alone there and having them seem like they are avoiding me or if I do talk about it they make jokes or gloss over it. It just hurts because I need caring people right now. And I know that at my old store I would be surrounded by caring, supportive people. I mean I have friends outside of work too and I have been getting support from them as well and from my family. But the people I worked with at my old store were like family to me. We really cared about each other.

Anyway, lately I have just been bursting into tears really easily. I feel really alone and I am in constant stress and worry about what is wrong with me. It practically sent me over the edge when I called the blood specialist and found out he works at the cancer center. I freaked out. I called my mom and she reassured me that my doctor was just trying to send me to the best and that if he thought it was cancer that he would tell me. That did help to calm me down. It's just been really hard. I'm trying to still work and keep on top of my school. At least school is almost over. My b/f has been as supportive as I can expect, I know it's stressing him out too but he's trying to stay positive.

Do people act strange when they know someone is having health issues? Does it make people uncomfortable or something? Cuz I just feel like people are avoiding me at work, which hurts me and confuses me.

I'm sorry to hear that you are having to deal with all of these physical health issues on top of everything else. I know first-hand how difficult this kind of thing can be-- I was diagnosed earlier this year with several auto-immune disorders (SLE, Reynaud's, Sjorgen's and Fibromyalgia). You are not alone.

For me, Yes people acted weird at first. They didn't know how to respond, at least that's what I've concluded. It's scary to see someone you know who is still young and seemingly healthy go through some serious-type medical issue. Especially with something like auto-immune which is very difficult to diagnose and most people don't know anything about. It helped me to try to look at the situation from their perspective-- all they see is someone who misses a lot of work and has a lot of pain stemming from something the docs can't figure out. It is a weird thing to have to go through on both your end and theirs.

I found what helped the most when dealing with other people about this was to just level with them. Tell them how scared I was, tell them that I didn't have the answers either, let them know how I was feeling and how I needed them to respond. If I felt someone was ignoring me, I called them on it and tried to find out why and what I could do about it. It's really difficult to go through this, but staying honest with yourself and others and effectively communicating your needs and feelings will help-- at least it did for me.

As for the fear........you don't have any answers yet. You don't know what's causing any of this and until you do, there's nothing you can do about it except to stay calm. Use all the tools in your arsenal to do so-- stress can exacerbate your physical symptoms, so the more calm you achieve with your mind, the better the physical stuff. I think, for me, it helps to remember that there is some stuff in this world that I simply cannot control or foresee.....there is stuff I just have to accept. It's not easy, but if you can come to a place of radical acceptance with some of these physical issues I believe it will help you get through this with your mind intact. Please try to keep in mind that medicine is not an exact science-- there are no clear-cut black-and-white diagnosis especially with auto-immune involvement. They have ruled out some of the more serious stuff with your chest x-ray. You can take some comfort in that I would think. These diagnoses are made by ruling out other things-- hence all the specialists. Try to be patient and be glad every time a scan or test comes up clean. That just means there is something else you DO NOT have; always a good thing.

I really feel for you as I have been through a similar experience. I know that you can get through this! Try to stay strong and just concentrate on the facts. As for the other people......give them some leeway if you can. It's scary for them too.

Thank you so much for your reply, it was very comforting and it eased the feeling of being alone with this. It's good to know that it sounds like it may be normal for people to act a little weird when you are going through something like this. It started to make me feel very isolated and alone but you are right I need to remember how this may be making them feel and if they are ignoring me just to confront them with it to see what is going on with their end of things. I'm trying to remember when an old co-worker of mine was dealing with breast cancer and everytime I saw her I would want to say something to show that I cared and to see how she was doing but everytime I would get too scared to say anything about it because I was so afraid of saying the wrong thing. So maybe that's how people are feeling towards me?

I'm really sorry you are going/went through this as well. I hope you are doing better and that the doctors were able to treat it and help ease any discomfort or pain you were/are in. Auto-immune diseases are like the mystery diseases, at least that is what I'm starting to learn. But you are right, the more tests that come out okay-the better. And you are right I need to try to stay calm for the sake of my health. How did you get through it? The waiting and wondering?

Thank you so much again for your words, it is very comforting to have someone relate and understand. I will try to stay strong and to give people leeway too.

Yes, I think that's exactly what this is like. Or maybe not quite-- cancer is a diagnosis many people are familiar with. They know someone who has had it or are somehow more aware of what people go through with it; it's more known and more visible (loosing hair, weight loss, etc.) With auto-immune, you may look exactly as you did before. You may have days where you feel just find and then -- boom-- the next day you can't walk, but it's still not visible to most. It is scary not only for you but for those who care about you. Of course in either situation people do not want to say the 'wrong' thing-- they just plumb don't know what to say because there is very little understanding even in the medical community much less everyday people about auto-immune issues. They just don't know what the 'right' thing to say is. Truth is, there may not be anything about your issues people can say to comfort you, but just letting them know you feel alone and need some kind of support I think would do the trick.

In my case.....I'm still fairly young (I'm 32) and people would think to themselves "wow, if this is happening to her it can happen to me" sorta stuff too. It brought their own mortality and human fraility to the surface. That's a scary thing for anyone to confront. The more facts I could help them understand about my condition (like they can't 'catch' it from me, etc.) -- especially the parts that aren't visible when you look at me (like I'm in incredible pain but I'm trying to push through) and that sort of stuff, the better my friends/family/co-workers have been about it all. I really believe that direct, honest communication where you not only tell your side of things but ask a lot of questions (and leave the door open for them to ask you questions) will help facilitate your pals rallying around you during this time of need! I feel like people who care will want to support you and if you just level with them about how scary this stuff can be (it IS scary!) and how you don't really have any firm answers either but you are still a human going through medical issues and need support, then maybe they can better help you; they will understand how to do it better. Let them know that there is little 'wrong' that they can say or do-- anything and everything others did helped me, even the really poor attempts showed me they cared. And....you can help them feel less 'weird' about it all because now they will know something about it and what you need, plus get their questions answered honestly too (beware, you may get some off-the-wall questions, I did, but again direct communication and maintaining a sense of humor helps). Plus, having answers at the ready for any question they might ask means that you have to some research yourself and learn more about it personally, so it's win-win. The better you understand your possible diagnoses, the better you can adapt and accept them AND the better you can explain them to others.

For my Lupus, there is a great analogy out there called"The Spoon Theory that really fits me and what I go through. Maybe it will be relevant to you too.


Thanks you. It's been one of the more difficult things I've gone through in life so far, to be perfectly honest. It's scary. But.....what I feared most was the not knowing. After I had something to call it and could do something, anything, about it I felt better about the whole situation. I go to a fantastic Rheumatologist who started me on some meds (that I was terrifyed of at first!) for my condition(s) and gave me some lifestyle pointers to boot. My meds take a long time to kick in-- one took 4 months before I could tell it was doing anything at all. I finally just had to trust in him and his experience. Now that they have started to work, I do feel much better. Though.....I have to say that for my condition there is nothing out there that will make me feel 'normal' again........the meds help, but they don't 'cure'. Some of the effects of my illness I'm just going to have to find a way to live with so I'm making the best of it I can, trying to stay positive and let go of that which I cannot change.


Well, first of all I wouldn't say I'm 'through' it just yet. I still have my pity-party moments, my moments of extreme fear of the unknown and a lot of stuff going back to my Mom (who died of MS when I was 12, another auto-immune). This stuff hits close to home for me. But....I feel good about those things I can actually DO about it; diet, exercise, stress-reduction, meds, etc. and at some point I've just got to let the rest go. It does me actual harm to dwell on those things that I can't do anything about-- all the 'why me's' and 'what if's' just are in no way productive for me. So.....I do what I can, cry sometimes, and RA the rest. It's not easy, but I would say that I'm pretty much at peace with things now.

The waiting and wondering isn't helpful to you. It won't do you any good to agonize over this stuff-- you cannot control it. So, work with what you can control, work with what you CAN do. The rest will happen in time.......until then the very best thing you can do is stay calm. Any stress will exacerbate your symptoms. Do things you enjoy doing (to the extend you can go out and do things!)-- try to stay active even when you don't feel like it, get into a great book, watch a movie, eat healthily. Above all, know that there are many, many, many people out there in your same boat. For my stuff, there are all kinds of internet sites on Lupies.....reaching out to others who are or who have been in my situation and seeing that they can do it makes me feel more like I can too.

Really, Julie, this isn't going to be easy. But....you CAN and WILL get through it. Especially if your final diagnoses is RA-- that is a very treatable condition and I believe once you get the meds and lifestyle stuff down pat you can go about your life as 'normal' as you were before. I am very grateful, even more so now, about the smaller things in life. If I wake up without too much pain and can go to work and cook dinner for my H, I'm happy, that was a good day. If I can go for my morning runs (which I can't do everyday anymore) even better. I'm grateful for what I can still do more than dwelling on what I cannot. Stay as positive as you can; you will come out on the other side and may just learn a thing or two about your own resiliency and determination to boot. I know I have.

Okay, I didn't mean to write you a book, lol. If you ever want to PM me about this or anything else, I'm here. I know you can handle this. Stay true to yourself, maybe even grieve a bit over what could have been and do your best to RA those things you cannot change. It's not an exact science, but there are plenty of other patients out there with the same issues. If they-- if I-- can do it, so can you.

Harmonium,

Ack! I wrote this long response but somehow I got logged out and lost it all! Anyway, thank you so much for your response and your advice. I have tried being honest and direct and answering people's questions. That has helped a lot and people seem more responsive and comfortable. I talked to my RA specialist today and we discussed the sarcoid diagnoises and he thinks it is hiding out somewhere in my body cuz sarcoid can do that so just to hope that it doesn't show it's ugly face again for a while. My symptoms have subsided greatly, which has been very hopeful for me. But I do notice that if I push myself too hard I start to swell and it is painful again so I have had to slow down overall but am definitely better than I was before. I think you are right about autoimmune diseases being so puzzeling and strange for other people because it isn't very obvious and it can change from day to day. I also agree that it may be scary for other people to know that someone seemingly young and healthy can just one day find out they have some disease that even the medical professionals don't know very much about. Btw my RA specialist said that on the show "House" they also refer to lupus and sarcoid when they cannot figure out what is wrong with a patient. I dunno if you've ever seen that show before, but they try to figure out medical mysteries and treat them. But he pointed out that there was a reason they always refer to those on that show, lol.

I am so sorry to hear about what happened with your mom when you were little. That must have been so hard. And I can only imagine going through something like that and how you must be feeling about your diagnosis, that would be scary. But I'm glad to hear that your treatment is helping and that you can still do many of your everyday activities. That is awesome and hopeful

I did what you suggested and I had to let go of control and just let things be. I have issues with that as it is, so having to RA that I cannot control this but rather work with treatments and stay positive has been a struggle but once I did let go it was like a huge relief.

Thank you so much for your advice and especially your support. Talking about this with someone that understands really helps and is comforting. My original response had way more to it and I cannot believe the whole thing was deleted! Anyway, feel free to PM me anytime too if you ever wanna talk

Yes, they do, all the time! As soon as you mentioned sarcoidosis I thought of House. See, I have heard of it even if I don't really know what it is!

It sounds like a really difficult time for you. I'm glad your symptoms are improving a bit and that you've been able to radically accept things - it does help but as you said, letting go can be such a struggle. Just wanted to add my support.