Reprimanded at work for an ITP flare

Great news Kathy, Sounds like it will all turn out for the better.
Sorry, can't help much about what info to give re.Itp. Others might have something more concrete to add than just be honest (which I'm sure you don't need to hear).
Take care of yourself and good luck with the new job.
Cheers, Sally

The new job will hopefully start up this coming Mon., March 7th. Paperwork and orientation are done through the hospital where I will be working.

I did a job shadow this morning for four hours and although it is different from my last duties, I feel I can learn the routine well in a matter of a few weeks to be comfortable enough to go on my own. It is part-time, something that I was thinking of doing anyway, so that is fine. I like the pace of this office better than my last job! I should hear something within the next 24 hours.

I had my platlet count rechecked again today and it's normal, at 200,000! All this stress hasn't effected that count at least, with what has been going on in the family. Things really should start to settle down again to routine. I'm ready for that!

Due to the new job starting up soon, I had to rearrange some of my heme appointments, but that's okay, it's well worth it. I cannot wait to see my own hematologist and let him know what has been happening here! If someone had told me at the beginning of Feb. all this was going to happen I would have said they were nuts. Life can change on a dime, that's for sure! Things work out for the best though and before too long, I bet you I'll be sailing through my days again in fine form.

Best of luck to others out there! Good thoughts and normal platelet counts to all!

Kathy

UPDATE!

I saw my Dr. today and my platelet count was at 196,000, last one was 200,000 as was the previous one. I'm back into a spontaneous remission again without any medications right now. I won't have to go back again to be monitored until June now. That's good, because I'm tired of being a human pincushion!

On to my new job news; I've been working at the new job now for a full two weeks. It is perfect for me, lots of computer training right now and I have to learn all about insurances, but so far so good! I'm even getting to know some of the patients in this new office, but I'm behind a window now and not in direct patient contact, plus I'm working part-time, only 24 hours a week, and making the same money I was at my last job. I really like the small group of ladies I'm working with, the physician, and the job!

I spoke with a few of the ladies from my previous job and there is so much misinformation floating around there now about why I left. They thought work was making me sick! Total ignorance of the real situation, sad to say. I am glad I got out of there when I did. It was time. The few that know the real situation were sad to see me go, but they are happy that I landed where I did and that I come by to visit them often. They say I look like a totally different person, probably due to the lack of stress, but they were used to seeing me in scrubs uniforms and now I can wear regular clothing to my job. I have to say I am happy with my current job and situation. The friends I had are still my friends, now I'm just making new ones too.

I haven't really said anything yet at the new office about ITP. I want to get settled there for a bit longer before I bring that fact up. After what happened at my last job, I want to approach it differently here. They do know I go for appointments and blood tests at this new job, but they have been polite and have not asked any questions. I've been nonchalant about the whole thing for now. I do get very worried when my counts drop and I know my former job/office was seeing that. I guess I want to really avoid the same kind of reaction from my co-workers and office manager as I previously had, although my new office manager is an RN (the other one was NOT) and I believe this group may be more informed and understanding. I'll find out eventually, but if I am back in a spontaneous remission again and not having any problems, I don't feel it's necessary to bring it up just now.

I do have to post briefly that I was tested for PNH today, something that came up at one point due to an elevated LDH level, dark urine, back pains, and severe fatigue. I think the test takes a couple of weeks to come back. For those of you that don't know, PNH is paroxsysmal nocturnal hemoglobinuria, a very rare illness where the red blood cells break down (hemolysis) and can cause a whole host of problems. My Dr. wanted to know what on earth made me think of asking to be tested! It would fill in a few more pieces of my health history puzzle if that test comes up positive, or the symptoms could just be a conicidence. Approximately 10,000 people in the world have PNH. Having PHN along with ITP is even rarer, but heck, we ITPers are a rare bunch too. I just thought I'd mention it here for anyone new to ITP to know. That's why the hematologists do so many blood tests, to get a proper diagnosis and treatments for the patient, not just for ITP, and to be sure there is nothing else going on. I was told by my hematologist that once a person gets an auto-immune disease, it can develop into something further as many here already know, or other auto-immune diseases can also develop. It pays to be vigilant and it is very important to be monitored by a specialist.

Okay, I'll get off my soapbox for now, LOL! I'm going to get back to my evening chores for now and enjoy my down time. Take care everyone!

Kathy

I'm glad everything is working out for you. A true success story!

Hi Kathy,
After reading your story and seeing what you have been through I admire you very much for having the courage to to resign and look for a new job in todays climate.
To belive in your self and the skills you have that much is something you should be very proud of.
You now sound to be in a much better position with a lot less stress which will be good for your ITP. Well done and I hope all keeps going good for you in the future.
I could not sleep last night just thinking about how unnecessary all this grief was and how easly it could have avoided if your Boss had shown some compassion & understanding, you did the right thing.
Benny.

Hi again!

I have to say that after all my four and a half years of experience with ITP, after my last flare, I jumped right back into work and life with both feet hitting the floor running, optimistic that things would work out okay and I'd be just fine. It didn't quite go the way I had thought it would, but I am very happy with how things are now. I'm in remission, I have lost a lot of the fear I once had with ITP, and have learned to "ride the roller coaster" of this disease. Trying to get "outside" people to understand this illness and what people who have it have to go through is a whole different ball game, I am learning. My family took a long time to come around, and I'm not sure some of them still know exactly what happens with the ITP flares up, they only know that my counts are low and that I am "sick". If I remain optimistic, then hopefully that will rub off and it is not a big deal, as long as I am being monitored and treated as needed. I know my symptoms and what to watch for, and if I am in trouble and need to get that CBC done STAT! My Dr. is seeing this too and knows I don't pester him unless it is a true emergency.

I am really loving my new job too! This is exactly what I was looking for; a smaller office with only one physician and less stress. I have had good training and have been blessed to have caught on quickly. Within three days I was running the front desk mostly on my own, just being overseen by my trainer. I know I still have a lot more to learn, but the majority of the work ethics and processes I have gotten down. I'm sure I will make mistakes, everyone does. Sometimes that is how things are best learned, the hard way. Isn't that true? I'm always puttering around the office, on the prowl for something else I can do or help out with. They are afraid that I don't like the work, that it's too slow for me, and that I'll end up just sitting and twiddling my thumbs. I guess the worker I replaced did that and hated it. I love it though! We also get a chance to sit and chat with the patients or with the physican, or each other. What a novel idea to me! Just that few minutes of bonding with someone, even if it is only small talk, is so precious. My blood pressure is going back to normal and my stress levels are practically gone now, and I'm actually coming home happy to have been at work for the day! Hey, I know there will be bad days, or days I'll feel all beat up too, or come home super tired, it's bound to happen. After all I've been through, I am really enjoying these good days though! I love the hours I work as well. I'm a morning person and this job starts early in the morning but the trade off is I'm done every day by 4:00. I have time to get home, cook dinner, clean, do the laundry, or just sit and be a couch potato if I want to. Hallelujah! LOL!

I have to admit that I did my own taper off Prednisone during my last flare up. I HATE that drug, but it works for me, I just cannot stay on it very long. Apparently I scared the people at work, I am definitely not myself(according to my husband, I grew horns and had a pointy tail and a pitchfork!), and this is the first time I've never had any side effects of doing the tapering. When I was on a very s-l-o-w taper, I had such aches and pains and couldn't seem to get off Prednisone as whenver I did, my counts would drop. I cannot stand any noise or confusion, and have anxiety enough to put any drug out of business for that side effect when I'm on Prednisone. I confessed my quicker taper to my hematologist and he did give me a funny look, but the outcome was good and he knew I had been taking the drug and that was more important than my not doing exactly what I had been told.

Hopefully all of this will help others to know they are not alone. If nothing else, perhaps a bit of entertainment from someone else's drama? I know everyone has a bit of that in their lives. This too shall pass and things go back on an even keel again, so keep your chin up! Keep on posting or reading, whatever you need to do. This is a great site for support and information!

Kathy

By the way Kathy, how's your PNH screen?

That's wonderful Kathy, i'm so happy for you, glad to hear it has all worked out for u

Hi all!

I haven't heard anything on my PNH testing. I will call to verify the results but I am assuming that it must be negative or my hematologist's office would have called me. It was worth getting tested for though, for my own peace of mind.

I had a very nice chat last week with the nursing co-ordinator within my new office about auto-immune diseases. It seems she has a family history of lupus and is having some issues with symptoms herself, so that broke the ice and made it easier for me to bring up my ITP.

I'm still loving the job, and now they started to train me to help out on the clinical end of things. It's just a matter of figuring out what paperwork goes where, and their routine of doing things.

I heard from a former co-worker that "evil office manager" has been getting a hard time from some of the physicians I used to work for. Seems they keep asking her to call me back in and that they want me back, but she is refusing to do it. I like my new job too much to make that move back into that crazy job. I was being severely overworked and didn't even know it until I got this job. Besides that, my new boss will not let me go! She likes me and my work ethic way too much and would fight to keep me happy. I'm sure at some point the glow will wear off, but I'm hoping not for a while here. It will be very interesting to me to see how over time the lack of stress on the job will effect my health, hopefully for the better!

I just wanted to post about my PNH testing, and here I am babbling on and on, sorry! I hope everyone is doing well. Take care, I'll check back here again soon!

Kathy

that's great Kathy! It's encouraging to see someone else doing well. You said....

I am assuming that it must be negative or my hematologist's office would have called me.

I personally wouldn't assume! I surely don't want to rain on your happiness, but really, I wouldnt' assume that.

You are so right on that point, Gretchen. I worked in that office and know very well how things can fall through the cracks. I put a call in to my hematologists office today and will call again on Monday as I never heard back from them today. It is a very busy office with several Drs. in it, so I'm sure the person who was trying to take care of that got sidetracked. They literally have life and death in their hands every day, with the chemo treatments going on. My little question just wasn't a priority, but it will get taken care of if I am persistent enough!

Kathy

Hi again!

I heard from my hematologist today and the PNH testing came back normal, which means it's negative and I don't have PNH! That is good news. It only took three phone calls to his office to get that information, otherwise they would not have contacted me. My next platelet check is in June. I keep thinking, "....low stress, high platelets...." Hope it stays up!

Kathy (Think I need to get into a new thread.....)