Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC: Where's the chit chat??

Where's the chit chat?? 8 years 1 month ago #20517

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
Are we all shy to talk about our issues or are we just not having any issues? :whistle:

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 1 month ago #20520

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
Hi Dean... have had one but only tonight was back on and noticed your question... a good one! Anyway, mine is simple. I have been studying the link between seritonin and platelets and teh impact on moods and energy. Why is this different for guys? Well, one, we'll never admit to it! And maybe more importantly, none of us, esp those of us over 50, wants to admit to needing to slow down. I have heard from the women in the group here, and what I've been able to learn, that there is an apparent linkage. And, in the receont PDSA news there was a discusion regarding fatigue... but wondering who else amongst our group fights with this? Or, is it really just getting older? T

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 1 month ago #20542

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
Yep, I have researched the same thing. Platelets carry Seritonin, so if counts are low your mood/energy will be affected. I went through two depression phases after ITP diagnosis. The first was pretty serious. I cried for no reason and lost interest in everything I used to enjoy. It was Horrible. I weaned myself off the Depression Med the first time as I thought, hey I am feeling myself again so why keep taking the Med. Depression symptoms returned, not as severe but it was back. So, back on the Med I went. Had a real hard time admitting the fact that I was suffering from Depression. I was amazed at how well the medication worked. Sleeping was also an issue at times. Work nights and was getting only a few hours of sleep a day. Tried several OTC sleep aides. Some worked (for awhile) some did just the oppisite. Ambien did not work, so Trazidone was prescribed. I took the full 150mg the first night. That was a mistake. I felt like I was drunk for over a day. Trazodone is used for Depression but is also for sleeping issues. Have worked nights for 17yrs. About 12 of those I also worked part time in the afternoon: Mon, Tues and everyother Wed. I had a hard time admitting that I needed to slow down. My health became a priority, so I pretty much stopped the part time job.

I playout alot easier than I used to. I am only 44!! Mood plays a big role in my energy level, along with age, lack of regular exercise and of course ITP. Counts have been good for over 2 years though. Also wonder if the two rounds of Rituxan have affected my stamina. I never had much of a Medical Records file until after ITP!!!

Thanks for the Chit Chat!!

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 1 month ago #20609

  • cgoewert
  • Offline
  • Posts: 49
  • Thank you received: 3
Hi guys:

I haven't been on the site much. Why? Because I have been trying to overcome my depression and fatigue. Reading every body's comments, it all sound the same. I have been on many anti depressants the last few years, and if there is a negative body response, I had it. Since my ITP was diagnosed, my issue seems to be the fatigue. The effort to keep moving and active at times seems to be a real struggle. While, I do not like hearing that other people are going through the same struggles, I am glad to hear that I am not alone.

I keep wondering what is not being to our system because of the low platelet counts and then once the antibody attaches to the platelet, the platelet it quits functioning as a delivery mechanism. So even the platelets we have may not be providing things like Serotonin.

My hemo is very good, but does not understand the fatigue issue. But the more I read and hear from other people, the more I beleive that no one really has a handle on the complexity of blood.

A question for the group, is anybody able to maintain an exercise program? And does it help?

clem

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 1 month ago #20622

  • mendenmh
  • Offline
  • Posts: 63
  • Thank you received: 5
MUNGH! UGG! Grawr! Ogg want beer and fire! Ogg want Thaga to make fire, and clean cave!

(Isn't this what man-cave chit-chat should be like?)

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20799

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
Like you guys, fatigue is huge for me too. I have not really considered the depression, but soon after the ITP found out that the immune system wasn't all that happy with my liver, which is now damaged for good (cirrhosis) along with a little chronic gastritis, and others... Hemoc tells me that, in his experience, ITP is almost always packaged with other stuff related to immune issues. Always chalked some of this up to the liver. They say depression can be part of any serious and/or chronic life changing illness. May be that they discount the seratonin linkage? Could be a one-two punch for me.

I do exercise a lot, which I think is the one thing that does help me. I always feel better afterwards. I ride a bike or walk at least 60 minutes a day, and generally ride my bike to work and back all year (yes, I live in WI, and it does snow, and I am nuts... but some of my favorite riding... in bikes they say there's no bad weather, just bad clothes). This year I actually raced on road and off road bikes. It was a rush. But, the doc makes me wear body armor to protect my liver and enlarged spleen, and is forever asking me if I wear my helmet (I do). What is intersting is that the Hemoc and the Hep disagree... the Hemoc says I have the ITP (confirmed by tests) and the Hep says I do have ITP, but my count is esp low due to the liver causing a back up in to the spleen. I think, who cares, I have ITP and liver, and my counts are too low. So let's fix it! They are limited in meds though since my liver is compromised already.

Did have surgery this past week... a lap gallbladder removal and liver sample. Didn't have any stones, but there were issues with the gallbladder wall... my immune system back at it again. All went well. The Mayo surgeon is a genious. Five holes and less than 250cc of blood lost. You can tell I have the ITP though... my son tells me my abdomen looks like I've been beat with sticks! One massive bruise. Oh well. Great for horrifying the healthcare folks when I yank my shirt up. MD was worried about the number of holes, esp since one is almost 3" long... thought I would have scars... reassured him that there is no chance on this earth I am running around in a Speedo anyway, so there is nothing to worry about.

I will do some more research in to the seratonin thing. Thanks for the lead. Makes sense. Throw in some liver stew, and I'm ready to take a nap and some medication! Any good way to boost seratonin naturally? Any recommendations on studies? T

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20824

  • cgoewert
  • Offline
  • Posts: 49
  • Thank you received: 3
Wow you must have had a massive gall Bladder. Last year I had mine out. Only three small holes. They were able to vacuum it down and pull out through a small hole. Sounds like yours was large and thick walled and they were not able to reduce it.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20825

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
It is amazing the way surgeries are done now days. A few tiny holes, some small tools anr they are done. A person swallows a razor blade, Dr goes in with a few micro tools cuts blade up and removes piece by piece. Also discovered a sheetrock screw and a pop tab further down the plumbing!!!
My liver enzymes were quite high awhile ago, ALT/AST. Not sure what caused it. Numbers are normal now.
Depression really debilitated me. I believe the only treatment for low seratonin, is SSRI's
More medication!! I am one that does not like to rely on a pill to fix things. During my depression I thought, knock it off and get over it!!!! I felt I should be able to "fix" what is wrong in my head myself. I was ashamed and embarassed to admit I was depressed and needed help for it.

I tried riding bike to work in the "summer" but it did not last long. No way I would ride in the winter, unless it is via snowmobile!!

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20893

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
I have heard that depression all but takes you down... and sometimes does. A pastor friend shared something with me that I use all the time... trust me, it isn't as crazy as it sounds, really... anyway, when I get overwhelmed (frequently) I see the problem and then place it in a secure box in my mind (the crazy sounding part) then lock it tight, place it in the hands of God and simply say this is way more than I can handle right now... and walk away mentally... it really does work...

I did a presentation not long ago, and used the analogy of a boxer with someone who has a long term serious and chronic illness... and that a boxer will get knocked down, get back up and go back at it. Enough getting knocked down tho and they quit getting back up. A bit like us I think. Personally, I have been dealt a lot of knock downs the last two years, and had reached the point of not getting up... when I realized thru a friend that God has a plan for me too. Being worth a bit less in terms of stamina and other things doesn't make me/us worthless. Instead, I think it makes all of us worth more. We see life as it is... and we have a recurring opportunity to reassess and reposition our priorities. That is a gift. Moreover, and I do have faith in God, it gives me new insight and new tools to go about His work here on earth.

I often turn to the Psalms where Paul rides the roller coaster of emotions and knock downs, and I think he turned out pretty important! Anyway, I go too long... but for 2012 I am once again looking and praying about how to use these experiences to the good of others, and for a much more stable year than 2011! You are welcome to join me. Tom
The following user(s) said Thank You: Dean

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20921

  • cgoewert
  • Offline
  • Posts: 49
  • Thank you received: 3
I really had not ever tried to learn what Serotonin was and only knew that it affects mood and mental health. Just looked it up on Wikipedia ( en.wikipedia.org/wiki/Serotonin ). It indicates that platelets play a key role for moving the Serotonin from the bone thought to the brain. I have taken SSRIs previously. I had a lot of physical responses to them, such as twitches, shaking, etc.

I keep what else is not being transported around the body because of low Platelet counts. When my counts are really low, then my blood is very viscous, and fills the sample vials almost instantly.

Since platelets are nice and sticky, they could move or drag quite a few things around the body.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 weeks ago #20944

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
Serotonin does play a pretty big role in our system. In terms of our body function, Serotonin can also affect the functioning of our Cardiovacular system, muscles and various elements in the Endocrine system. Of the aproximatly 40 million brain cells, most are influenced either directly or indirectly by Serotonin. This includes brain cells related to mood, sexual desire and function, sleep, appitite, memory and learning, temperature regulation and some social behavior. The human body is constantly changing and the most complex machine on the planet.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 2 weeks ago #21073

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
From a site called Mediprimer while I was looking for info on Seritonin... nothing new here, but I love the last short line! Sort of "Oh, no big deal, but by the way, your quality of life could be impacted in a major way, but no worries". I think that's the one thing about ITP that's always made me a bit nuts... it's a "well it won't kill you, so what are you not happy about???" disease, and not taken too seriously.

ITP (idiopathic thrombocytopenic purpura, immune thrombocytopenic purpura)
What is ITP? [/b]In a nutshell, ITP (an abbreviation for "idiopathic thrombocytopenic purpura") is a disease that kills platelets. Platelets (thrombocytes) are blood cells, just like red cells and white cells, and they are responsible for blood clotting. If there are not enough platelets, cuts and bruises bleed longer and don't heal as well as they should. Platelets are also involved in storing serotonin, a brain neurotransmitter that is responsible for sleep/wake cycles, appetite and mood regulation. Thus, a decrease in platelet count may affect these functions.


Nobody knows why ITP develops. It is known, however, that ITP is an autoimmune disease, which means that an affected body starts attacking one or more of its organ systems. There are many autoimmune diseases, and ITP is just one of them. ITP triggers the immune system to mark platelets as foreign, and subsequently to destroy them in the spleen or, sometimes in the liver.

ITP is generally not fatal; however, extreme cases may be life-threatening because of a risk of spontaneous hemorrhages, internal bleedings and hard-to-stop bleedings that might be caused by injuries. Also, people with ITP may suffer from depression and fatigue.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 2 weeks ago #21102

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
Totally agree!!!

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 2 weeks ago #21130

  • cgoewert
  • Offline
  • Posts: 49
  • Thank you received: 3
I agree also. But is understates, for me, the level of fatigue. And the second element is the negative side of the treatments.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 2 weeks ago #21139

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
The fatigue level varies quite a bit. Some have no symptoms of fatigue, others have severe fatigue. Side affects from medications also vary from person to person. Some suffer from depression with ITP other do not. No treatmen, medication or human comes with an owners manual as to how we/it will work with each individual. We have to make our own decissions and roll with the Punches. It Sucks sometimes.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 6 days ago #21491

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
Hi Dean... quick question... what are your depression symptoms? How did you know in teh first place... as compared to fatigue alone, for example? Ok if you wish to email me directly... just let me know. I am curious because everytime I go to the primary doc I get asked about all this, as though he's looking for it... but I really don't understand what it looks like, and teh descriptions on the inet are so vague as to be half useless... T

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 5 days ago #21542

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
I basically lost interest in everything!!! These were some of my symptoms; Difficulty concentrating, making decessions, Fatigue, decreased energy, feelings hopelessness/worthless, excessive sleeping, loss of interest in activities/hobbies I once enjoyed, sad (cried alot for no reason) anxious (felt like walking as if I was trying to walk out of the depression), wanted to be alone. It was horrible. We moved shortly before I dropped to 10k. I had all of my stuff in boxes and could not get myself to unpack and get up and running again. I enjoy woodworking and fixing thing. It was like I forgot how to do anything!!!! I felt like a little Baby!!!!
I feel I got double punched with triggers, ITP and the stress of moving.
Depression is definatly on the rise!! I see it alot.
Do you feel like you experience any of these symptoms?
What does your Dr. ask you?
Try sending me a private message. I have sent a few messages in the past and get no response. So, I am not sure if it is reaching the receiver or the receiver is not responding.

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 4 days ago #21570

  • tlanger
  • Offline
  • Posts: 15
  • Thank you received: 2
I will ahve to figure out how to do a private message... I'm a bit challenged when it comes to tech! Didn't see a note, but if you resend one, I will look for it... thx, T

Please Log in or Create an account to join the conversation.

Re: Where's the chit chat?? 8 years 3 days ago #21588

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
t, I just sent one.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 9 months ago #40852

  • Rmaxwell
  • Offline
  • Posts: 7
  • Thank you received: 0
Hi guy's,

New here. Remission over. 2 nd time. Depression is real thing with thi itp. I find cycling, music ,slot cars, model railroading, and anything that keeps my mind away from itp and counts can help.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 9 months ago #40854

  • weirdjack
  • weirdjack's Avatar
Slot cars? I thought I was the lone slothead here! I'm primarily a T-Jet enthusiast these days. But have been manufacturing silicone slot car tires under the 'Rocket Science' name for about 18 years (HO, 1/48, 1/43, 1/32 & 1/24 vintage types).
And music? I had just formed a new band in 2002 when diagnosed with ITP. Great fun to play biker bars on Dexamethasone!
At least bikers don't ask why I was bruised all the time. ;)

Sorry, I don't really have any issues to chat about. ITP is a pesky inconvenience, but that's life.

.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 9 months ago #40912

  • Rmaxwell
  • Offline
  • Posts: 7
  • Thank you received: 0
T-jets and anything H.O. . This I.T.P thing is sure a pain in the back side. I do think things could be worse.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 9 months ago #40941

  • weirdjack
  • weirdjack's Avatar

T-jets and anything H.O. . This I.T.P thing is sure a pain in the back side. I do think things could be worse.

Cool! I have been a T-Jet fan since they came out. Started in slots way back when Hobbyland rented Aurora vibrator cars for 25 cents per 1/2 hour...must have been around 1963 or so.
I'll be at the Richfield show this coming Sunday. Not sure if you go to that one or not.

ITP most definitely IS an inconvenient pain in the a$$.

.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 8 months ago #41221

  • Rmaxwell
  • Offline
  • Posts: 7
  • Thank you received: 0
Hey weirdjack,

I have not been here in a few weeks. I did go to the same show. Picked up some nice cars. I need to visit more often.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 8 months ago #41226

  • weirdjack
  • weirdjack's Avatar

Hey weirdjack, I have not been here in a few weeks. I did go to the same show. Picked up some nice cars. I need to visit more often.

Well cool.....but I didn't see you.
I was easy to spot: I was the older guy ogling at slot cars (that described 90% of the room).

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 8 months ago #41250

  • Rmaxwell
  • Offline
  • Posts: 7
  • Thank you received: 0
Can't imagine I could have possibly missed ya. After the show some of the guys I work with came over to race. The next show there is in Oct.. I think the 26th. We will have to wear purple hats or something.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 8 months ago #41438

  • Rmaxwell
  • Offline
  • Posts: 7
  • Thank you received: 0
Back in for Retuxan. Hope top get a little longer break this time.

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 5 months ago #43220

  • SuperDave1
  • Offline
  • Posts: 50
  • Thank you received: 4
Hi all,

will try & be as brief as I can. For me I truly dont want to worry my family, and just went on ignoring ITP once had my 1st treatment ( IVIG ) thinking it was cured .
(Diagnosed 1994) then , when I needed Carpel Tunn. surgery on both hands I began learning it was no joke . Had a heart attack in 2004 (at-45)and my platelets were fuctuating 15k-30k . Did OK with a couple of WINRO treatments but by 2010 was back to 20k. had to take job out of town in 2010 coming back to family only on weekends , guess stress was too much and had my 1st brain bleed .
so - 2011 got spleenectomy , which helped but 10 months later relapsed back to 40k.
THEN SHIT HIT THE FAN ! Got laid off after 35 Yrs , Diagnosed with LUPUS , thank GOD my Hematologist was able to get me SSDisability (within 2-months!) she was head on the Board at local Hospital & head of Cancer center. Then she retired ughhhh... and 1 week later I was back in Hosp with headaches , Had Brain Sugery , followed by Pnuemonia ,followed by leg bleed,followed by urinery infetion . Long story/short DONT IGNORE HEADACHES !

I now dont miss/ignore any Dr appointments and take all meds as prescribed ,but at 56 cant
work anymore which was tough after 35 yrs, so i am on antidepressants.

To stay sane i go fishing as much as i can .
but my alcohol intake has increaseed slighty to 6-pack beer / week .
currently platelets are holding near 120 K !

GLAD TO FIND THIS SITE enough chit chat
THANK YOU
STAYING POSITIVE SUPERDAVE

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 4 months ago #43772

  • DanC33
  • Offline
  • Posts: 276
  • Thank you received: 11
Hi SuperDave, Yikes you've been through the wringer!! Men with Lupus are very rare, in fact my Rheumatologist says that I'm only the second male patient he's had in 20+ years of practice. And like you I was put on SSDI and I'm only 45. So I feel for you.

Now fishing and beer drinking go hand in hand. Or is it the other way around? :laugh: Just be careful with wheat beers they can cause inflammation.
The following user(s) said Thank You: SuperDave1

Please Log in or Create an account to join the conversation.

Where's the chit chat?? 5 years 4 months ago #43872

  • SuperDave1
  • Offline
  • Posts: 50
  • Thank you received: 4
Hey Dan ,

Thanks ..... was thinking i' d never get response
Yeah most Lupus patients are female !!
Lupus Kicked my ass last year . going to 4 Dr appointments coming up,
Brain Dr 1st . Getting some headaches again so can't screw around.

never heard of the wheat beer situation.
thanks cuz I used to like Hacker-Pschorr Weiss beer .
but not recently.
AGAIN
Thanks Dan
not many men on this site
SuperDave
Staying posetive
The following user(s) said Thank You: DanC33

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo