Job Loss Teaches Me to be Kinder to Myself -PK Scott

I was 29 when I was Diagnosed with ITP and I struggled to keep my job. I was in and out of the hospital and finally I had no more sick days. I would just have to take a day without pay. I was put on FLMA and took a year for short term disability. After 6 years of a battle to stay health and to stay employed because I had to have the insurance, I finally had to retire after 12 years of being what I thought was my calling, I had to step out of the classroom and it broke my heart. I had a graduate degree as well as a good income. I had purchased my first home and I was doing well financially, but I was forced to put my health first. I was embarrassed that I couldn't do it all. After being on long term and filing for permanent disability, I am putting my health first and coming to terms with what I felt was a shameful embarrassment of not being able to do it all. It is a slow process especially knowing there is no cure for my ITP, there is only constant maintenance. So each day, I must take positive steps to stay healthy. The best thing that I have learned through this process is to be kinder to myself and focus my energy in the here & now. I hope you are finding some peace with your new normal. I know that I am, but it comes and goes and everyday is different. Some are better than others, but it helps to know that I am not alone on my journey. Thank you for letting me share my experience. Love, Light, and Laughter. Namaste PK Scott

Thank you for sharing your story Namaste. Somtimes it takes a lot of courage to step up and say that you are at the point in your life where you have tried you best and your body just doesn't want to cooperate. You need to first take care of yourself; otherwise, you end up with other health problems. I've felt that way with my ITP journey. Sometimes during my working career, I took on so much stress and it did a number on my body and my ITP at times. Good luck in your new life and you should always be proud that you have accomplished a lot in your life. Our journey always continue foreward!
DeeDee Marie

I feel for Namaste. There are times when I miss a day or two of work every other week or so. I would like to reach out to those with more long term experience with ITP. I have always had a low platelet count but didn't put the pieces together re: ITP until October when I was exposed to a variety of environmental substances that brought my count much lower 89,000, than it typically had been made me so sick and felt horrible. This probably isn't so dramatic or chronic as what others experience. My symptoms are recurring fatigue, body aches and regular stomach aches. My hematologist following me says my count has been stable at 122,000. My question, is fatigue and body aches common symptoms of ITP? My doctor said fatigue and body aches have nothing to do with a low platelet count. I do feel somewhat better after eliminating artificial sweeteners and wine from my diet and eating simple, fresh meals. Questions: do you have suggestions to boost your energy level? Is it common to have body aches accompany the fatigue? Thank you for your time.

I assume your doctor has never had ITP. The fatigue can be quite debilitating at times particularly if my counts are low (below30) so much so that I had to swap my job in order to be able to continue nursing. "Fatigue........is a common feature of chronic illnesses and a significant number of both adults and children with immune thrombocytopenia (ITP) suffer from fatigue." This is from the opening paragraph of a 2015 article in the British Journal of Haematology onlinelibrary.wiley.com/doi/10.1111/bjh.13385/full


Anne

Thank you for your reply. I've been wondering if I shouldn't look for another doctor. She isn't trying to push radical treatments on me because my counts are consistent, not as low as they were last October. She's referring me to my primary physician for the fatigue and body aches. I'll check out the article for more information. Thank you again!

ectaylor, Your counts are actually quite good at the present. My son and husband have counts at around 130,000 at times but do not actually have ITP or any of it's symptoms. Now my counts are normal at the present, but they have gone down to "0" in 2010 and I was in the hospital at the time. I do have fatigue and am also going to be tested for CVID since I have been getting sick quite a bit during the last 6 months. Maybe you should have your doctors check you out for other illnesses too; using the process of elimination. Good luck to you!

I know my symptoms aren't severe. Doctors are looking for "normal" platelet counts and my blood work is always flagged for low platelets. Finding answers is definitely a process of elimination. Thank you!

I don't think your platelets are a problem. I'd look at other causes for the symptoms too. Normal platelets are not necessary and treatment is not needed with counts above 30k.

Thank you for your Response to my story DeeDeeMarie. Once I let go of trying to have the life I thought I was suppose to have and began to life the life that I had, it improved my mental and physical health.
PK Scott

Thank you for reading and replying to my story ectaylor. Although your platelet count is higher than my normal, your experience with being sick, feeling horrible, recurring fatigue, body aches, and stomach aches are not unfamiliar to me or to the stories I read of others. I have to disagree with your doctor (*I am not a doctor) because no one know your body better than you do. I believe as do other people with ITP and doctors that Fatigue is common in the ITP community. There is research to back up my statement. I have learned over the years that medicine is not an exact science and Doctors are not Experts. Doctors are apart of your medical team. Doctors are a guide through the complexity of the medical world. They are a "road map." They can give you the information that you need to make the best choices for your health and happiness. Not everyone agrees with my point of view on medical professionals, but throughout the years this point of view has been a positive experience for me. Regarding your question on suggestions to boost your energy. I found that the better I eat (the better fuel I put into my body) the better I function/feel. I think you have found this to be true also. There are days, when I just feel exhausted, not well. Those are the days when I am kind to myself and honest with those around me. When I am tired, I rest. When I am full of energy, I do things. I have learned not to over do it when I feel good because I have learned that I will not feel good tomorrow. As you can probably tell by my response, I am learning each and everyday. My ITP is not a destination, is is a part of my life.

Sandi,
I have to disagree with you regarding your statement about Platelet counts not needing treatment above 30K. This is why. I believe (*I am not a doctor) that treatment for ITP should be individualize and symptomatic ( active bleeding, serve bruising, or based on other medical conclusions specially related to the individual) not number based. I write this because I have arrived at the post in my life that, we (my doctor and I) won't treat until I am constantly (a 3-4 day period) below 20K or if I have symptoms. There are other factors (symptoms) involved with dropping PLT counts as we have come to understand. If individuals only look at the number on a page, then individuals learn to disregard their body's natural responses and state of being. This I feel is a big mistake. However, the general consensus with the medical community of treatment for individuals with ITP has been for at least the last decade, is as you stated, treatment is not needed with counts above 30k.

Pshay:
I was quoting protocol. Very few patients have symptoms severe enough to treat with counts over 30k, so treatment is not normally recommended over that count. Some people wait to treat until counts are even lower. Due to the seriousness of treatment side effects and drug toxicities, it's best to wait until symptoms warrant treatment. I agree that symptoms are more important than counts, but having observed here for 18 years, I have only ever seen one or two people who needed to treat with counts over 30k.

I completely agree with you Sandi, that to treat with counts over 30K is a standard medical protocol and that it is best to wait until symptoms warrant treatment. Just a quick thank you for your continued participation in supporting others with ITP through your moderation for this PDSA forum.

Thank you, pshayK for your reply. I didn't agree with my doctor's suggestions of a bone marrow biopsy and steroid treatment. She isn't pushing anything drastic as my counts aren't extremely low. The only time my platelets fell to 89k really low for me, was after being exposed to all the wrong things. I am probably have "situational ITP" made that one up - my numbers drop if I get around things I shouldn't. The magic number my doctor kept mentioning was if my platelets ever go below 100 I need to see her. Otherwise I'm fairly stable and with a healthy diet I hope exposure to all the right things will bring positive results. Thank you!

ECTaylor,
I agree with your post. As long as your are symptom free, if I were in your shoes, I would not opt for treatment either. Nor would I want a bone marrow biopsy. I am a firm believer that we are completely in charge of the direction of our health care. I believe that our doctors are guides, but don't get to make the absolute decisions about our treatment/ health care. I believe with a good doctor's guide, we get to make those final choices. It sound like you are making good choices and I like the way you look at your doctor as giving you suggestions. I wish you much health and happiness.

I was in a high level position for many years with the US government . Even with a diagnosis of ITP and needing to take frequent leave I was was an outstanding performer. My supervisor understood because he also had a serious auto-immune disease. Never the less my agency pushed my supervisor and me out of our jobs. Never mind all of the protections afforded me by civil service. My doctors and I believe that the high stress work environment that I found myself dealing with was an ITP trigger. I receive disability at 61. About four years earlier than when I had planned to retire. My wife continued to work so that our retirement plan was not totally devastated. It has been a hard 4 1/2 years with two additional ITP crashes. There has been many employment opportunities for me but all of the opportunities were high stress situation that we all felt would trigger back the low ITP permanently. I still struggle to deal with my ITP situation everyday.

Hi PK-Scott,
I haven't been on the forum for a while, but I thought I jump in and give you my reply. I've had ITP since 2006 with two really bad episodes and the last one in 2010 being really bad. I do believe that the stress increases your chances of having a relapse. I felt the same way when I was working--all the stress was getting to me. I was pushed out way ahead of the time that I wanted to retire (2003); then worked in real estate for a while (didn't make much money at the time). So I understand how you feel. And, I understand how the government, along with big companies operate. When they want you out, it is hard to fight them to keep your job. I tried to keep my job, but it was a losing battle, and that was before my ITP. Actually, the stress of trying to keep my job and my long drive is what pushed me into my first ITP episode. It sounds like you are doing good and it was probably wise to avoid another high stress job. I've did the same thing, avoided any high stress job and I've had a 7-year remission. You do need rest as the fatigue gets me down. And, try to avoid the high stress situations.
Good luck to you!
Dee Dee

Hi there
I haven't been on the forum lately as life has been busy and I started chatting on the facebook page. When I read your post I had to share what I did with my life recently. You see I was diagnosed with ITP when I was 29. I've used various treatments over the years. I still have my spleen and have had remissions. When in remission I went back to school to be a nurse. Got myself a job as a nurse manager. When ITP came back I did my best to juggle work and doctors and treatment. I would work my 8 hour shift and sleep 12 hours then wake up in time to get ready for work.
Last December I decided to try going gluten free and have also taken milk out of my diet. That has helped with my over all feeling a little better, but I was still sleeping so much and missing out on life. Then the stress of the job got really bad so I decide to make a change. I quit my nurse manager job and got myself a job as a general labour. I now make minimum wage and work in a factory building the panels for those big tall sky scrapers made of glass. I work Monday to Thursday till 3 pm and Fridays till 12:30 pm and have every weekend off.
I sleep 8 hours a night, take naps when needed but the best part is I am awake and back to enjoying life. So do what is best for yourself and start enjoying life! My counts are still low but instead of dropping till I hit zero I now seem to be bouncing between the 40's to 80's for the past 4-6 months.
Sometimes a change is good even when we can't see it during the moment!

I am also gluten and soy free. I definitely feel it makes a difference.

Winnifred, thank you for sharing your story. I've followed you for years (and thank you PK-Scott). I'm not on this forum too much any longer, but I do miss everyone. I agree totally with all of you. My platelets have been good and I am still always tired. I think resting is what has kept me in remission for 7 years. My platelets were starting to come down some during my last draw, so not sure what they are now. I am attending the PDSA conference in Arizona this years since we can drive to it (about 6 1/2 hour drive). Wishing everyone the best--including Sandi.
Dee Dee (P.S. I did a Norvatis video which will be coming out in Sept.--hope all of you get a chance to watch it and listen to my story). It's on my itplife .com. Some other patients from here participated too. Hope mine isn't too bad as I was coming done with a bad cold right before (Bummer!).