Hello everybody!

I just wanted to introduce myself. Some of you may know me from the MSN group
that switched to Multiply. I'm Lauren, a ttp survivor. I'm 22 and I had my first
episode of ttp a year and a half ago. I came down with a cold, and as the week
went on, I got worse and worse. Eventually, I started noticing massive bruises
and purpura. I was getting jaundice also, and I went to the doctor. She took a
blood sample, let me go home, then called to tell me to get to the emergency
room. I was admitted to the hospital with my platelets at 13,000, which quickly
dropped to 10,000. It took them 2 days to figure out what I had, doing a bone
marrow biopsy and many other tests. Finally, they put the neck catheter in and
went ahead with plasmapheresis. After a week, I was released. I relapsed 3
months later, went in at 100,000 platelets and dropped to 19,000 overnight. They
put the catheter back in, a week and a half of treatment, then I was released.
It's been a year and 3 months since my relapse and I'm doing well. I get tired
sometimes if I don't rest or eat well. I get really bad migraines also, but
otherwise, I'm doing great. I just moved to Pittsburgh, PA for graduate school!
If anyone is in the area, let me know! I hope everyone is well!

--- In thrombocytopenia@yahoogroups.com, "jeanetterb2002"
<jeanetterb2002@...> wrote:
>
> My dearest family
>
> How are you all??
>
> I hope you are all well :-)
>
> Well here I am home from the hospital, feeling very, very weak & tired
but I wanted to post a short update for you..
>
>
> I didn't feel too clever on 25th June & had the rash - only had three
bruises this time -
>
> went to get a FBC & plates where 45.. I was jaundiced too, I thought I
had a tan !!!
>
> Admitted immediatly, line fitted & plasma (PE) commenced that night...
the next day plates where 25...
>
>
> Plates have slowly risen but HB taking longer. I had PE until last
monday we got through 5 bags & then I started having rigors, chills &
severe nausea - the line was taken out immediately & I commenced on IV
antibiotics..
>
> Unfortunately I've got septicaemia - blood cultures came back positive
that I have 2 infections.
>
> There where lots of cold / flu viruses on the ward so it was thought
best to return home with meds as it was safer than catching more bugs..
so for now its 20 antibiotics a day, which Ive been advised may lower
the plates so fingers crossed all will be ok..
>
> I'm back next week for a check up... & will post an update xx
>
>
> I was that shocked with the platelet count I thought it was No 5 but
its relapse No 6.. so lets hope I have a few years in remission, as you
all know this has been a long one for me - since October so lets hope
its all sorted now..
>
> Thank you all for your support (as always) your all so very dear to
me, I'll post next week
>
> Until then my friends
> high plates & lots of love
>
> Jeannie xxxxxxxx
>
>
> ps: time for some sleep xx
>

Hi Jeannie,
Wow, you sure are going thru the wringer this time 'round. It's not
enough to have a relapse, but to get 2 infections as well!! I'm glad
they let you leave the hospital, b/c so much gets passed around there.

This sounds stupid, but what are the "rigors"??

I'm still at my cottage on the east coast here in N.S. , Canada, where
I'm originally from. Hope to be here until Sept if all goes well
health-wise. I take nothing for granted, and appreciate every single day
I have TTP-free.

Still dealing with my fibromyalgia and some post -ttp symptoms that sort
of overlap I think. Right now I'm dealing with a return symptom of a
sore throat, seems to be around my tonsils. I'm thinking maybe it's my
immune system making up for the fact that I have no spleen.

I hope you get better day by day, and keep us updated. We miss seeing
your posts.

Nancy

--- In thrombocytopenia@yahoogroups.com, "jeanetterb2002"
<jeanetterb2002@...> wrote:
>
> My dearest family
>
> How are you all??
>
> I hope you are all well :-)
>
> Well here I am home from the hospital, feeling very, very weak & tired
but I wanted to post a short update for you..
>
>
> I didn't feel too clever on 25th June & had the rash - only had three
bruises this time -
>
> went to get a FBC & plates where 45.. I was jaundiced too, I thought I
had a tan !!!
>
> Admitted immediatly, line fitted & plasma (PE) commenced that night...
the next day plates where 25...
>
>
> Plates have slowly risen but HB taking longer. I had PE until last
monday we got through 5 bags & then I started having rigors, chills &
severe nausea - the line was taken out immediately & I commenced on IV
antibiotics..
>
> Unfortunately I've got septicaemia - blood cultures came back positive
that I have 2 infections.
>
> There where lots of cold / flu viruses on the ward so it was thought
best to return home with meds as it was safer than catching more bugs..
so for now its 20 antibiotics a day, which Ive been advised may lower
the plates so fingers crossed all will be ok..
>
> I'm back next week for a check up... & will post an update xx
>
>
> I was that shocked with the platelet count I thought it was No 5 but
its relapse No 6.. so lets hope I have a few years in remission, as you
all know this has been a long one for me - since October so lets hope
its all sorted now..
>
> Thank you all for your support (as always) your all so very dear to
me, I'll post next week
>
> Until then my friends
> high plates & lots of love
>
> Jeannie xxxxxxxx
>
>
> ps: time for some sleep xx
>

Sent from my Verizon Wireless BlackBerry

My dearest family

How are you all??

I hope you are all well :-)

Well here I am home from the hospital, feeling very, very weak & tired but I
wanted to post a short update for you..


I didn't feel too clever on 25th June & had the rash - only had three bruises
this time -

went to get a FBC & plates where 45.. I was jaundiced too, I thought I had a tan
!!!

Admitted immediatly, line fitted & plasma (PE) commenced that night... the next
day plates where 25...


Plates have slowly risen but HB taking longer. I had PE until last monday we got
through 5 bags & then I started having rigors, chills & severe nausea - the line
was taken out immediately & I commenced on IV antibiotics..

Unfortunately I've got septicaemia - blood cultures came back positive that I
have 2 infections.

There where lots of cold / flu viruses on the ward so it was thought best to
return home with meds as it was safer than catching more bugs.. so for now its
20 antibiotics a day, which Ive been advised may lower the plates so fingers
crossed all will be ok..

I'm back next week for a check up... & will post an update xx


I was that shocked with the platelet count I thought it was No 5 but its relapse
No 6.. so lets hope I have a few years in remission, as you all know this has
been a long one for me - since October so lets hope its all sorted now..

Thank you all for your support (as always) your all so very dear to me, I'll
post next week

Until then my friends
high plates & lots of love

Jeannie xxxxxxxx


ps: time for some sleep xx

--- In thrombocytopenia@yahoogroups.com, gwolverinebooth@... wrote:
>I also take zoloft which was prescribed by my hemo. I am very cautious of what
I take because when I came down with my TTP I was on  simvastatin (generic for
zocor)  for my high cholesterol. That is a med listed on literature in the UK as
a trigger for TTP. I had been on it for about 1 1/2 years. I googled "meds that
cause thrombocytopenia" and a list should be available for you to review. It
really is a big concern and we hope all of our doctors do right by us.

Mary Jo



>
>
> I take Zoloft.  no problems that i know of but i feel ok. 
>
>
>
> your friend
>
>
>
> gary booth
> ----- Original Message -----
> From: "carla bienaime" <kuky_2008@...>
> To: thrombocytopenia@yahoogroups.com
> Sent: Wednesday, July 8, 2009 10:36:37 AM GMT -05:00 US/Canada Eastern
> Subject: [thrombocytopenia] Anti-depressants
>
> Hi all.
> Usually when a med is prescribed to me by any other doc except my hem I always
ask if it affect platelets or not.
>
> I was taking Effexor for a month and I asked my pain doc if it'll affect my
platelets or can trigger TTP. He said no, so I took it.
> When it came time to refill it, my insurance will no long pay for it. So. he
calls the pharmacy A WEEK LATER and orders Paroxetine HCL aka Paxil GSK.
> I never had the chance to remind him if it's ok on platelets.
> I have been taking it since Monday and it is now I find myself wondering about
this drug. Here is what I found...
>
> Paroxetine decreases platelet serotonin storage and platelet function in human
beings.
> Clinical pharmacology and therapeutics 2000;68(4):435-42.
>  
>
>
>             
>             BACKGROUND:
> Serotonin is a platelet agonist and potent vasoconstrictor that has
> recently received attention concerning its potential role in acute
> coronary artery thrombosis. Selective serotonin-reuptake inhibitors,
> such as paroxetine, are widely used antidepressant agents. We sought to
> characterize the potential inhibitory effect of paroxetine on platelet
> function. METHODS: Healthy male volunteers received 20 mg/d paroxetine
> for 2 weeks in a randomized, double-blind, placebo-controlled, two-way
> cross-over trial. RESULTS: Paroxetine decreased intraplatelet serotonin
> concentrations by -83% (P < .01). This inhibited platelet plug
> formation as reflected by a 31% prolongation of closure time measured
> with the platelet function analyzer-100 (P < .05). Furthermore,
> paroxetine lowered expression of the platelet activation marker CD63 in
> response to two different concentrations of thrombin
> receptor-activating peptide (P < .01). Plasma concentrations of
> prothrombin fragment, von Willebrand factor antigen, and circulating
> P-selectin remained unchanged in either period, indicating that
> paroxetine does not increase activation of coagulation, endothelium, or
> platelets in vivo, underlining a favorable safety profile. CONCLUSIONS:
> Paroxetine substantially decreases intraplatelet serotonin content and
> thereby reduces platelet plug formation under shear stress, and
> responsiveness to thrombin receptor activating peptide-induced platelet
> activation. Further studies will reveal whether these pharmacodynamic
> effects can be exploited for treatment of thrombotic artery disease.
>
> AS AN OBSERVATION IT IS ALWAYS GOOD TO CHECK ON THESE THINGS
> I USE PAROXETINE AND PLATELETS AS KEY WORDS. I WILL CALL MY HEMA TO FIND IF
THIS IS A MED I SHOULD KEEP USING BECAUSE THIS INTRAPLATELET  SEROTONIN THING
HAS ME WONDERING.
>
> HP TO ALL
>
>
>
>
>
>       
>

Hi, everyone and high HP to all,I'm still getting Plasma-exhange 2x a week but
throug all of this I'm still holding strong thanks to all of you!  Sorry about
the pic,I.m learning how to send them.

----- Original Message -----

From: Sue B

To: thrombocytopenia@yahoogroups.com

Sent: Tuesday, July 07, 2009 7:33 PM

Subject: Re: [thrombocytopenia] I have a question

Kristi, Sounds like me. In September of 2007 I started having problems with my right foot. Anytime I sat up, my right foot would turn purple. Lying down, it was normal color. I ended up in the hospital for 3 days. Naturally, the village idiots (not joking) here could not find anything wrong. When I asked them about doing a cat scan, as it seemed something was blocking the circulation, they acted like I had no clue what I was talking about, but did it anyway. They said the results were normal. I had also had a MRI done on my foot, which found a small blockage in my foot. The doctors said that surgery was not an option, or meds, that it would clear itself....they were wrong. Over the next few months, the pain was so intense that I was taking morphine and dulotid(sp) every 4 hours. I have no clue how I managed to get myself to work each day, or function for that matter. I tried going to a pain management doctor, who again belonged to the village idiot clan.  My ankle and foot started swelling, and each step I took sent pain thru my entire body. I had scratched one of my toes in the middle of the night that ending up getting infected to the point that I thought I was going to lose it. My podiatrist gave me a topical antibiotic, but it only made it worse by keeping the sore moist.  He would also inject my foot with Marcaine to try and eleviate the pain. It didnt last long. Finally in March of last year, I got in touch with the Mayo Clinic in Jacksonville, FL. I had to wait a month before I could be seen, but it was well worth it. After 2 full days of testing, the doctor called me on the 3rd day to tell me that I had a aortic aneurysm building. I was not 100% blocked, but enough to cut the circulation in my leg and foot. I had to have a chemically induced stress test to be sure I was able to have the surgery. That didnt go well. I ended up having an anxiety attack during the test. So, they decided to do a heart cath, going thru the brachial instead of the groin. The doctors didn't want to distrub the aneurysm going thru the groin. This caused more problems. I am terrified of Heparin, and let the doctors know, so they didn't use Heparin during the procedure. This caused a blood clot in my arm, so I had to have emergency surgery to remove it. Again, not using Heparin, I got another clot and had to have it removed. This time they used heparin and everything went well. Another 3 days in the hospital. On May 19th of last year, I had aortic graft replacement surgery and they cut the nerve to my foot.  The surgery went well, but caused me to relapse. I spent 3 weeks in Mayo, getting apherisis and 2 rounds of Rituxan. After leaving Mayo, I had another month of apherisis and 6 more rounds of Rituxan. I finally went back to work on July 27th last year. My pain is gone. My foot feels a bit numb, and is ugly ( the toe ) but I feel so much better. Since this whole ordeal, I have taken steps to help ensure that I don't have to go thru this again. I'm on cholesterol meds, I have changed the way I eat, and what I eat. I've gotten my blood sugar under control. And, I've joined a gym and have lost 18 lbs since February. My only vice now is smoking...I'm working on it.   Good lord, I wrote a book!   Suz --- On Sun, 7/5/09, Kristi Ott <kjcottmt@lvcta.com> wrote: From: Kristi Ott <kjcottmt@lvcta.com> Subject: [thrombocytopenia] I have a question To: thrombocytopenia@yahoogroups.com Date: Sunday, July 5, 2009, 7:40 PM Hi,   Has anyone else had any problems with circulation.  I did have my spleens removed, even though 5 little ones have grown back so my platelets run high when everything is o.k. around 500 to 875,000.   On Wed I had  angiogram and they were going to put a stint in my iliac artery.  That's just below our belly buttons.  It comes from the aorta to the iliac and then branches out to feed both legs with blood.  My blockage is in the common iliac.  The radiologist said he never saw anything like happened.  When he put the stent in my platelets all started clotting around it so he didn't leave the stents in because he felt they would completely block the stents.  My vascular surgeon is supposed to be calling me.  I know some of you guys have taken coumadin has anyone ever had to take heparin.  My blockage is almost 100% and I can only walk less than 10 feet before my legs really start to burn.  Let me know if anyone know about this or if you have taken heparin or coumadin.  Thanks so much Kristi ----- Original Message ----- From: namacinnis To: thrombocytopenia@ yahoogroups. com Sent: Sunday, July 05, 2009 12:13 PM Subject: [thrombocytopenia] Re: A question for everyone?/Nancy Carla, Thanks for the support. Glad you have an older person in your life as well. Sure helps to see that we have a lot to be thankful for even on our bad days. Sorry to hear about your myofascial pain dx. I'm reading a book right now on both fm and cmp. You're right, they are so similar and in fact I'm starting to wonder if I have that too but I hope not. HP Nancy --- In thrombocytopenia@ yahoogroups. com, carla bienaime <kuky_2008@. ..> wrote: > > It is surely nice to hear that you're getting some good days during your summer vacation. Just to get out of your house and comfort zone and especially with the pain that comes with FM...I applaud you. I have a 87 years old aunt and being around her is therapeutic in a way that comforts my soul and gives me the inner strength to stay active despite of my pain. She is still in her right mind although she has swollen legs and feet that makes it hard for her to walk but she refuses to use her wheel chair or cane. She walks around her house without any aid despite of the pain. She has never driven a car and asks me to teach her every time she sees me. > You know my delemma with FM. Finally, I got the right DX which is Chronic Myofascial Pain and if you look it up it is 2 minutes away from getting FM. Some people with CMP develop FM. With all do respect to you and everyone else in this group who have FM...I wish I don't get to that point. You are in my prayers Nancy and I pray that you do win your LT Disability case. > > Hp to you and to all. > > --- On Tue, 6/30/09, namacinnis namacinnis@. .. wrote: > > From: namacinnis namacinnis@. .. > Subject: [thrombocytopenia] Re: A question for everyone? > To: thrombocytopenia@ yahoogroups. com > Date: Tuesday, June 30, 2009, 10:15 PM > > > > > > > > > > > > > > > > > > Hi George, > > Just noticed your post. I haven't been on in a while due to being lucky > > enough to get away for the summer. The main reason I did this was b/c > > I'm feeling a lot of the same stuff as you it seems. Ever since TTP, > > I've been in some sort of pain, and have an overwhelming fatigue. It > > took almost 3 yrs to get my diagnoses of fibromyalgia and chronic > > fatigue syndrome. I also deal with foot pain which started pre-ttp, but > > has gotten worse I feel b/c of it. Currently, i never go a day without > > pain. Also, my memory issues and "fibro fog" bother me a lot, b/c I was > > once a bright, quick witted person. Now I feel like the people on > > alzheimer commercials on tv. It is worse some days , and stress seems to > > be a factor. At the moment, I'm finding it hard dealing with family and > > friends who seem to think I'm "ok" b/c I don't "look" sick. Someone said > > to me 2 days ago, " you look so good, you must be feeling so much > > better". I didn't know how to begin to tell this person , so I just said > > well, my platelets are good, but I'm dealing with fibromyalgia . > > Unfortunately, people who don't understand the fm seem to think it's > > like having a sore toe or something. I wish. Back to some of your > > questions: I had PE and steroids, also cyclosporine (immunosuppressant) .. > > Then had splenectomy. Oh ya, gall bladder removed due to destroyed by > > ttp. I went back to work 1 month after that surgery and only part time. > > Got worse and worse, then stopped in Jan/08 and never worked since. Now > > on government disability and fighting with my insurance company for ltd > > benefits. I have a lot of days where I feel mad at not being my old > > self. However, yesterday was a good day for me--I visited my grandmother > > who turned 97. She is the inspiration of my life and when I'm with her > > my troubles seem to go away for just a while. She is the only person who > > doesn't know I was sick -we didn't want her to worry. She is in a > > nursing home now, but never complains. Told me she had a good life and > > that was all that mattered. I can only wish I could be more like her, > > but it's hard when you dont feel so well. I hope this answered some of > > your questions, and remember we all deserve a day where we can vent just > > a little. > > > > Nancy M > > --- In thrombocytopenia@ yahoogroups. com, "George" <zippy_dell@ ...> > > wrote: > > > > > > I would like to know how many of us are feeling these issues of pain > > and other underlying issues we never seem to have before any of us got > > sick. > > > 1. How many have had only PE and are having joint and bone pain? > > > 2. How many have had the PE and Rituxamab and are having the joint and > > bone pain? > > > 3. How many of you are feeling better as time goes on? > > > 4. How many of you have had more than 4 Rituxamab treatments? > > > 5. How many of you have been diagnosed with Fibromyalgia? > > > 6. How many of you are now in a position of not being able to return > > to work? > > > 7. How many are finding that as more time passes the fatigue does not > > get better? > > > 8. How many of you are just outright fed up with not being the person > > you were? > > > 9. How many of you have lost your drive for sex? > > > 10. How many of you find that as time goes by your quick time memory > > is getting worse? > > > > > > I ask these question because I am just so completely fed up with the > > way I am feeling and feel trapped. I am told that I should keep my chin > > up and am told that I will get better as time passes. I have at this > > point given the thought about everyone here and have said to my self, > > you are very lucky compared to most that are in this support group. But > > my overwelming feeling of the question depression has always been an > > issue and seems to a real problem at this point. I cannot get back what > > I had, I have been robbed and I have no one to blame. Some time I really > > wish I would fall asleep quietly and not wake up, I honestly feel guilty > > of robbing my fiancée of a life she deserves. And ohh she is an angel > > and saint. She is so young (23) and has so much time before her to get > > into a real relationship with someone who has thier shit togeather. It's > > really hard to feel guilty and to be innocent in a world that leaves you > > with such limited choices. > > > >

My doctor call it Post Traumatic Stree Disorder.  Mine has never gone away, but
it has gotten better.

HP to All
Jacquie



--- In thrombocytopenia@yahoogroups.com, "mjreynolds0756" <mjreynolds0756@...>
wrote:
>
> Hi Everyone,
> Hope all is well with everyone.  Once in awhile I have this nervousness and
anxiousness with no explanation.  Today I felt sick all day long. I sometimes
thinks it is my subconscious remembering being critically ill. I check for other
symptoms such as bruising, blood in the urine, etc.  It usually eventually
passes but I am wondering if anyone else experiences this.  I am 15 months post
PE and otherwise feeling fine.
> High Platelets to All
> Mary Jo
>

----- Original Message -----

From: tllmom2@...

To: thrombocytopenia@yahoogroups.com

Sent: Tuesday, July 07, 2009 11:55 AM

Subject: Re: [thrombocytopenia] anxiousness

we all get that, the constant fear of relapse can be a drain on anyone. get rest, try and think positive, I finally had to break down and start taking valium at night just to get some rest whenit gets bad. we all have hard times. my family is going through the worst thing ever, possibly worst emotionally than my TTP please keep us all in your prayers!
thanks,
 Tammy


-----Original Message-----
From: Sandra Stanley <vetnurse480@att.net>
To: thrombocytopenia@yahoogroups.com
Sent: Tue, Jul 7, 2009 11:50 am
Subject: Re: [thrombocytopenia] anxiousness

I get that sometimes too. If you are still on Pred that is one of the symptoms. Under than that I get mthose feelings because I feel sad that my life is not the same any more. I hate it.

 

Sandy S.

---

From: mjreynolds0756 <mjreynolds0756@hotmail.com>
To: thrombocytopenia@yahoogroups.com
Sent: Monday, July 6, 2009 6:39:57 PM
Subject: [thrombocytopenia] anxiousness

Hi Everyone,
Hope all is well with everyone. Once in awhile I have this nervousness and anxiousness with no explanation. Today I felt sick all day long. I sometimes thinks it is my subconscious remembering being critically ill. I check for other symptoms such as bruising, blood in the urine, etc. It usually eventually passes but I am wondering if anyone else experiences this. I am 15 months post PE and otherwise feeling fine.
High Platelets to All
Mary Jo

---

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----- Original Message -----

From: Sandra Stanley

To: thrombocytopenia@yahoogroups.com

Sent: Tuesday, July 07, 2009 11:50 AM

Subject: Re: [thrombocytopenia] anxiousness

I get that sometimes too. If you are still on Pred that is one of the symptoms. Under than that I get mthose feelings because I feel sad that my life is not the same any more. I hate it.

 

Sandy S.

---

From: mjreynolds0756 <mjreynolds0756@hotmail.com>
To: thrombocytopenia@yahoogroups.com
Sent: Monday, July 6, 2009 6:39:57 PM
Subject: [thrombocytopenia] anxiousness

Hi Everyone,
Hope all is well with everyone. Once in awhile I have this nervousness and anxiousness with no explanation. Today I felt sick all day long. I sometimes thinks it is my subconscious remembering being critically ill. I check for other symptoms such as bruising, blood in the urine, etc. It usually eventually passes but I am wondering if anyone else experiences this. I am 15 months post PE and otherwise feeling fine.
High Platelets to All
Mary Jo

Hi Everyone,
Hope all is well with everyone.  Once in awhile I have this nervousness and
anxiousness with no explanation.  Today I felt sick all day long. I sometimes
thinks it is my subconscious remembering being critically ill. I check for other
symptoms such as bruising, blood in the urine, etc.  It usually eventually
passes but I am wondering if anyone else experiences this.  I am 15 months post
PE and otherwise feeling fine.
High Platelets to All
Mary Jo

----- Original Message -----

From: namacinnis

To: thrombocytopenia@yahoogroups.com

Sent: Sunday, July 05, 2009 12:13 PM

Subject: [thrombocytopenia] Re: A question for everyone?/Nancy

Carla,
Thanks for the support. Glad you have an older person in your life as
well. Sure helps to see that we have a lot to be thankful for even on
our bad days. Sorry to hear about your myofascial pain dx. I'm reading a
book right now on both fm and cmp. You're right, they are so similar and
in fact I'm starting to wonder if I have that too but I hope not.

HP
Nancy
--- In thrombocytopenia@yahoogroups.com, carla bienaime <kuky_2008@...>
wrote:
>
> It is surely nice to hear that you're getting some good days during
your summer vacation. Just to get out of your house and comfort zone and
especially with the pain that comes with FM...I applaud you. I have a 87
years old aunt and being around her is therapeutic in a way that
comforts my soul and gives me the inner strength to stay active despite
of my pain. She is still in her right mind although she has swollen legs
and feet that makes it hard for her to walk but she refuses to use her
wheel chair or cane. She walks around her house without any aid despite
of the pain. She has never driven a car and asks me to teach her every
time she sees me.
> You know my delemma with FM. Finally, I got the right DX which is
Chronic Myofascial Pain and if you look it up it is 2 minutes away from
getting FM. Some people with CMP develop FM. With all do respect to you
and everyone else in this group who have FM...I wish I don't get to that
point. You are in my prayers Nancy and I pray that you do win your LT
Disability case.
>
> Hp to you and to all.
>
> --- On Tue, 6/30/09, namacinnis namacinnis@... wrote:
>
> From: namacinnis namacinnis@...
> Subject: [thrombocytopenia] Re: A question for everyone?
> To: thrombocytopenia@yahoogroups.com
> Date: Tuesday, June 30, 2009, 10:15 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> Hi George,
>
> Just noticed your post. I haven't been on in a while due to being
lucky
>
> enough to get away for the summer. The main reason I did this was b/c
>
> I'm feeling a lot of the same stuff as you it seems. Ever since TTP,
>
> I've been in some sort of pain, and have an overwhelming fatigue. It
>
> took almost 3 yrs to get my diagnoses of fibromyalgia and chronic
>
> fatigue syndrome. I also deal with foot pain which started pre-ttp,
but
>
> has gotten worse I feel b/c of it. Currently, i never go a day without
>
> pain. Also, my memory issues and "fibro fog" bother me a lot, b/c I
was
>
> once a bright, quick witted person. Now I feel like the people on
>
> alzheimer commercials on tv. It is worse some days , and stress seems
to
>
> be a factor. At the moment, I'm finding it hard dealing with family
and
>
> friends who seem to think I'm "ok" b/c I don't "look" sick. Someone
said
>
> to me 2 days ago, " you look so good, you must be feeling so much
>
> better". I didn't know how to begin to tell this person , so I just
said
>
> well, my platelets are good, but I'm dealing with fibromyalgia .
>
> Unfortunately, people who don't understand the fm seem to think it's
>
> like having a sore toe or something. I wish. Back to some of your
>
> questions: I had PE and steroids, also cyclosporine
(immunosuppressant) ..
>
> Then had splenectomy. Oh ya, gall bladder removed due to destroyed by
>
> ttp. I went back to work 1 month after that surgery and only part
time.
>
> Got worse and worse, then stopped in Jan/08 and never worked since.
Now
>
> on government disability and fighting with my insurance company for
ltd
>
> benefits. I have a lot of days where I feel mad at not being my old
>
> self. However, yesterday was a good day for me--I visited my
grandmother
>
> who turned 97. She is the inspiration of my life and when I'm with her
>
> my troubles seem to go away for just a while. She is the only person
who
>
> doesn't know I was sick -we didn't want her to worry. She is in a
>
> nursing home now, but never complains. Told me she had a good life and
>
> that was all that mattered. I can only wish I could be more like her,
>
> but it's hard when you dont feel so well. I hope this answered some of
>
> your questions, and remember we all deserve a day where we can vent
just
>
> a little.
>
>
>
> Nancy M
>
> --- In thrombocytopenia@ yahoogroups. com, "George" <zippy_dell@ ...>
>
> wrote:
>
> >
>
> > I would like to know how many of us are feeling these issues of pain
>
> and other underlying issues we never seem to have before any of us
got
>
> sick.
>
> > 1. How many have had only PE and are having joint and bone pain?
>
> > 2. How many have had the PE and Rituxamab and are having the joint
and
>
> bone pain?
>
> > 3. How many of you are feeling better as time goes on?
>
> > 4. How many of you have had more than 4 Rituxamab treatments?
>
> > 5. How many of you have been diagnosed with Fibromyalgia?
>
> > 6. How many of you are now in a position of not being able to return
>
> to work?
>
> > 7. How many are finding that as more time passes the fatigue does
not
>
> get better?
>
> > 8. How many of you are just outright fed up with not being the
person
>
> you were?
>
> > 9. How many of you have lost your drive for sex?
>
> > 10. How many of you find that as time goes by your quick time memory
>
> is getting worse?
>
> >
>
> > I ask these question because I am just so completely fed up with the
>
> way I am feeling and feel trapped. I am told that I should keep my
chin
>
> up and am told that I will get better as time passes. I have at this
>
> point given the thought about everyone here and have said to my self,
>
> you are very lucky compared to most that are in this support group.
But
>
> my overwelming feeling of the question depression has always been an
>
> issue and seems to a real problem at this point. I cannot get back
what
>
> I had, I have been robbed and I have no one to blame. Some time I
really
>
> wish I would fall asleep quietly and not wake up, I honestly feel
guilty
>
> of robbing my fiancée of a life she deserves. And ohh she is an
angel
>
> and saint. She is so young (23) and has so much time before her to get
>
> into a real relationship with someone who has thier shit togeather.
It's
>
> really hard to feel guilty and to be innocent in a world that leaves
you
>
> with such limited choices.
>
> >
>

Carla,
Thanks for the support. Glad you have an older person in your life as
well. Sure helps to see that we have a lot to be thankful for even on
our bad days. Sorry to hear about your myofascial pain dx. I'm reading a
book right now on both fm and cmp. You're right, they are so similar and
in fact I'm starting to wonder if I have that too but I hope not.

HP
Nancy
--- In thrombocytopenia@yahoogroups.com, carla bienaime <kuky_2008@...>
wrote:
>
> It is surely nice to hear that you're getting some good days during
your summer vacation. Just to get out of your house and comfort zone and
especially with the pain that comes with FM...I applaud you. I have a 87
years old aunt and being around her is therapeutic in a way that
comforts my soul and gives me the inner strength to stay active despite
of my pain. She is still in her right mind although she has swollen legs
and feet that makes it hard for her to walk but she refuses to use her
wheel chair or cane. She walks around her house without any aid despite
of the pain. She has never driven a car and asks me to teach her every
time she sees me.
> You know my delemma with FM. Finally, I got the right DX which is
Chronic Myofascial Pain and if you look it up it is 2 minutes away from
getting FM. Some people with CMP develop FM. With all do respect to you
and everyone else in this group who have FM...I wish I don't get to that
point. You are in my prayers Nancy and I pray that you do win your LT
Disability case.
>
> Hp to you and to all.
>
> --- On Tue, 6/30/09, namacinnis namacinnis@... wrote:
>
> From: namacinnis namacinnis@...
> Subject: [thrombocytopenia] Re: A question for everyone?
> To: thrombocytopenia@yahoogroups.com
> Date: Tuesday, June 30, 2009, 10:15 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>       Hi George,
>
> Just noticed your post. I haven't been on in a while due to being
lucky
>
> enough to get away for the summer. The main reason I did this was b/c
>
> I'm feeling a lot of the same stuff as you it seems. Ever since TTP,
>
> I've been in some sort of pain, and have an overwhelming fatigue. It
>
> took almost 3 yrs to get my diagnoses of fibromyalgia and chronic
>
> fatigue syndrome. I also deal with foot pain which started pre-ttp,
but
>
> has gotten worse I feel b/c of it. Currently, i never go a day without
>
> pain. Also, my memory issues and "fibro fog" bother me a lot, b/c I
was
>
> once a bright, quick witted person. Now I feel like the people on
>
> alzheimer commercials on tv. It is worse some days , and stress seems
to
>
> be a factor. At the moment, I'm finding it hard dealing with family
and
>
> friends who seem to think I'm "ok" b/c I don't "look" sick. Someone
said
>
> to me 2 days ago, " you look so good, you must be feeling so much
>
> better". I didn't know how to begin to tell this person , so I just
said
>
> well, my platelets are good, but I'm dealing with fibromyalgia .
>
> Unfortunately, people who don't understand the fm seem to think it's
>
> like having a sore toe or something. I wish. Back to some of your
>
> questions: I had PE and steroids, also cyclosporine
(immunosuppressant) ..
>
> Then had splenectomy. Oh ya, gall bladder removed due to destroyed by
>
> ttp. I went back to work 1 month after that surgery and only part
time.
>
> Got worse and worse, then stopped in Jan/08 and never worked since.
Now
>
> on government disability and fighting with my insurance company for
ltd
>
> benefits. I have a lot of days where I feel mad at not being my old
>
> self. However, yesterday was a good day for me--I visited my
grandmother
>
> who turned 97. She is the inspiration of my life and when I'm with her
>
> my troubles seem to go away for just a while. She is the only person
who
>
> doesn't know I was sick -we didn't want her to worry. She is in a
>
> nursing home now, but never complains. Told me she had a good life and
>
> that was all that mattered. I can only wish I could be more like her,
>
> but it's hard when you dont feel so well. I hope this answered some of
>
> your questions, and remember we all deserve a day where we can vent
just
>
> a little.
>
>
>
> Nancy M
>
> --- In thrombocytopenia@ yahoogroups. com, "George" <zippy_dell@ ...>
>
> wrote:
>
> >
>
> > I would like to know how many of us are feeling these issues of pain
>
> and other underlying issues we  never seem to have before any of us
got
>
> sick.
>
> > 1. How many have had only PE and are having joint and bone pain?
>
> > 2. How many have had the PE and Rituxamab and are having the joint
and
>
> bone pain?
>
> > 3. How many of you are feeling better as time goes on?
>
> > 4. How many of you have had more than 4 Rituxamab treatments?
>
> > 5. How many of you have been diagnosed with Fibromyalgia?
>
> > 6. How many of you are now in a position of not being able to return
>
> to work?
>
> > 7. How many are finding that as more time passes the fatigue does
not
>
> get better?
>
> > 8. How many of you are just outright fed up with not being the
person
>
> you were?
>
> > 9. How many of you have lost your drive for sex?
>
> > 10. How many of you find that as time goes by your quick time memory
>
> is getting worse?
>
> >
>
> > I ask these question because I am just so completely fed up with the
>
> way I am feeling and feel trapped. I am told that I should keep my
chin
>
> up and am told that I will get better as time passes.  I have at this
>
> point given the thought about everyone here and have said to my self,
>
> you are very lucky compared to most that are in this support group.
But
>
> my overwelming feeling of the question depression has always been an
>
> issue and seems to a real problem at this point. I cannot get back
what
>
> I had, I have been robbed and I have no one to blame. Some time I
really
>
> wish I would fall asleep quietly and not wake up, I honestly feel
guilty
>
> of robbing my fiancée of a life she deserves. And ohh she is an
angel
>
> and saint. She is so young (23) and has so much time before her to get
>
> into a real relationship with someone who has thier shit togeather.
It's
>
> really hard to feel guilty and to be innocent in a world that leaves
you
>
> with such limited choices.
>
> >
>

--- In thrombocytopenia@yahoogroups.com, carla bienaime <kuky_2008@...> wrote:
>
> Happy Bday LInda. May your day be filled with fun and joy. HP to you
>
> --- On Wed, 7/1/09, thrombocytopenia@yahoogroups.com
<thrombocytopenia@yahoogroups.com> wrote:
>
> From: thrombocytopenia@yahoogroups.com <thrombocytopenia@yahoogroups.com>
> Subject: [thrombocytopenia] Linda's Birthday, 7/2/2009, 12:00 am
> To: thrombocytopenia@yahoogroups.com
> Date: Wednesday, July 1, 2009, 11:41 PM
>
>
> Thanks so much for the birthday wish! I love this group so much! God Bless!
>
>
>
>
>
>
>
>
>
>
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>
>
>            Reminder from:
>             
>            thrombocytopenia Yahoo! Group
>
>             
>
>                           Title:
>                 
>                Linda's Birthday
>
>             
>
> 	       Date:
>             
>            Thursday July 2, 2009
>
>            Time:
>             
>            All Day
>
> 	       		       Repeats:
>                 
>                This event repeats every year.
>
>
>             
>
>
>
>               Get reminders on your mobile, Yahoo! Messenger, and email.
> Edit reminder options
>
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