Wednesday, January 27, 2010

imuran again!

Well im pleased to say my baby girl was born christmas eve happy and healthy. she was a little early considering i started to have probs with either my kidneys or blood pressure, so the docs decided to csection before the baby or me fell under severe stress. So i go see my rheumatologist the other day and were discussing my future as far as meds go. Well i really hate prednisone and so were gonna atrt another round of immunosuppresive drugs -chemo-(imuran) and see how that goes. Im nervous cuz when u start these drugs they really get u feelin' queezy, but i know the short term and long term effects of being on any med for a period of time can do to ya let alone prednisone. So were gonna start the imuran and taper off on the prednisone. Im anxious to see if my bod can function without prednisone since ive been on it for a while. All my levels are normal. Including my sed rate- the cpk can be normal, but the sed rate high. Sed rate measures inflammation as well. Id been having normal cpk but abnormal sed rates. However finally they are all normal. YEah! I feel as if im almost back to me again. Things still plague me but they are miniscule and I hope to continue staying in "remission". Bless you to all who are going through any problems..... I pray for health and happiness for you all as well. I wanna give thanks to God first and foremost. I have felt and seen his work in me. The prayers i received from complete strangers helped and my journey isnt over, i have my kids and my heart is beating another day and for all this im truly thankful.

Monday, January 18, 2010


I decided to go back and read my posts all of them. I needed a swift kick in the ass. A reminder to b grateful of where i am now. Im glad i have this "public diary" cuz sometimes i forget where i am and where I came from. I feel the sun coming through my window and i remember when i wasnt at this place so i guess i need to sit down shut up and b happy. and remember.............

Saturday, January 16, 2010

a new place

i hadnt posted in a while. i guess i wanted 2 forget that i had this thing plagueing my life in the back ground. Im way better so therefore i dont want to deal with "things". Now I come across a new barrier than ive never dealt with before. I havent been with my husband for some time now, and im scared. He knew me before i was sick when i was strong young confident and all those things. Im scared people wont understand me, love me, wanna deal with me cuz sometimes i dont wanna deal with me. I want people to accept me for me and not look at me as a girl with a condition,handicap, or whatever. So I dont want to tell them at the beginning but than I feel like a liar. They might think of me as a "normal" girl who can always get up and go. Like I use to be. BEfore I fell sick. So I dont tell them. I dont want to be labeled. Will someone love me despite this DM. Im moody cuz of meds, I cant do things most 28 yr old girls do, i live by blood tests, and meds. I feel soo good cuz I had my children that are healthy, and i tied my tubes cuz i dont wanna risk me dying or kids being born with problems, and I think i have my hands full with 2. they r the reason im doing so good they give me life, but as i type this with my 3 week yr old in my arms. i cringe. did i make a mistake because i cant be the mommy i wanted to be? the one i want 4 them. am i selfish? my 3 yr old boy knows how to take mommys blood pressure and gets me things when i cant. he needs to be a child not worrying about mommy being sick.

Sunday, August 23, 2009

no weight gain

Well now I "get it". Ive been on prednisone for such a long time and never gained weight like everyone says your suppose to. Hey no complaints but I saw a doc a few weeks back and just by my explanation of symptoms and one look he sugested thyroid problems. the blood test came back that it was my throid-thus the no weight gain and possibly my heart problems. So they are running another blood test to check exact levels of thyroid and will than put me on meds for that. It has been said that once you get one auto-immune disease others follow. I was told the problem with my thyroid is also auto-immune. im not worried cuz i hope this medication will help with the rapid heart beats. My body is essentially in workout mode, therefore my heart rate is elevated and metabolism is high, so no weight gain. If the only side effect I had was no weight gain id be fine with that but the rapid heart rate really isnt fun. Anything I do I have to rest, not so much cuz im tired but because it feels like a heart attack. Im relieved to know my heart isnt causing this. Now I pray i dont blow up like a balloon. only time will tell.

Tuesday, August 11, 2009

thank you dm

I do not like my condition, but it has opened my eyes to things I never even bothered to look at before. I wonder what my life would be like if I never had DM. I was in car accident when I was younger and was told I should have died. Yet I didnt listen and continued on my path of speeding and feeling untouchable. I had the world at my tips. I really wasnt bad but didnt really care or enjoy the small things. I remember when i was learning to walk again after my diagnosis I stood outside and felt the sun on my skin after six months of being pretty much immobile. The feeling was wonderful, the sun and the use of my legs was awesome. So much of how I see people and life has changed. (For the better) I still do feel down sometimes and frustrated, but we all do i guess. its life sick or not. Part of me hates this condition and part of me thanks this condition. I have my beautiful son and a new outlook and for that I thank you dm. ;)

Thursday, August 6, 2009


well i saw my rheumatologist yesterday and my mri results on my legs were in. I had an mri done on them because i get alot of pain in them. My cpk is controlled and i think i am in remission yet the pain continues. So an mri was ordered and the results were that I had an extensive amount of fluid in the fascia of my legs-between the muscles. Furthermore I had extensive amounts of abnormal tissue. Those are probably the lumps i feel behind my legs. They concluded, however that the fluid was not drainable. So i ask my doc. what do I do now? Do I live on pain killers for ever? I deal with it? He is going to try to give me IVIG transfusions again to see if they help. I knew something was wrong. I am so in tune with my body and i can honestly say i have never been wrong when I feel something is wrong. So if your cpk is controlled yet you still have pain it is so possible and could be something like mine. i guess the dramatic change in my muscle structure because of dm left me with these results. i hope the IVIG works. Still waiting till monday for cardio results.

Monday, July 20, 2009

my heart

When the nurse tells you somethings not right with your heart and they want to order all kinds of monitors, you panic. It is something I felt was happening for a while and I told my docs about it. I went to the cardiologists but my appt to see my rheumatologist isnt till 2 more weeks then he will tell me what the results were. The problem is that since my appt. my heart is getting worse. The nurse says it jumps from 90 to 114 the 90 to 120 and so on in a matter of seconds. It is beating all over the place. I want to know whats wrong. Im scared and I hope that there is some pill that can control it or fix it or something. Im 28 freakin yrs old I shouldnt have heart attacks and heart problems at my age. I should be strong and all those things young people are, i feel old. This only happens to older people. Im angry and betrayed by my own body. Im usually positive but lately it seems like things arent controlled. Just when I felt i had learned to cope with DM and now this. How much can one person handle. Thats what i hate about DM is you cant control it.Its so freakin unpredicatable. when I called the one person other than my husband im closest to to tell them they said they had to go they were busy. To busy to hear that im freakin out and i think im gonna die! I probably wont but i feel like it because your heart is precious and when you lose power over the heart its bad. i tried to ignore it and believe it was in my head and to actually hear it is scary. Its like being diagnosed for thefirst time with DM all over again. I HATE PREDNISONE! Stupid drug that saves my life kills me too. HOW IRONIC!

Saturday, July 18, 2009


I never knew how much this blog would help. When I find others out there that share my same worries and experiences I feel like i'm not alone. others just dont seem to understand what DM is or does. They dont know the effects of the meds and the mental and physical aspects. I cry when I read other blogs with people experiencing the usual weakness, longing to do more, frustrated with the meds etc... All I can say is I understand, I know. I may not know them personally but I share their experiences. I am motivated by their testimonies and I want to say thank you to anyone out there that is brave enough to share them. I hope that my blog helps others and I can truly say that those blogs have helped me. Though it may feel like we are the only ones on the planet with this WE ARE NOT ALONE.

Friday, July 17, 2009

so far so good

Ive seen the high risk docs and the reg. ones but im afraid to see my rheumatologist, he was the one to diagnoseme and has been my doc since then. I know he is gonna be disappointed because of the dangers for me and baby. So far so good the docs say baby is fine, but with patients with DM there is a higher possibility baby could die even after its born. The nurses that check me @home weekly have said im having probs w/my heart. I use to be on over a hundred mg of prednisone and could cope but now 10mg gets my heart beating. I dont know if the DM has weakened my heart because it is a muscle and therefore can be affected. Does anyone know how long people with DM usually live for? cuz my fear is that as i get older & body naturally gets weaker and w/DM its probably going to be worse. I guess only time will tell. So far so good.

Thursday, July 2, 2009

no words

Well im pregnant and have dm. the first time around i wasnt scared i felt id risk death to have a child and if God allowed me to get pregnant i would and I did. For some reason this time im nervous. They told me this could make me worse or better i already know all this. I know the risks yet i push myself i test it.You'll probably think im crazy for doing this again. I sometimes think im crazy. I went to the docs and the baby is healthy and has a normal beat. Here goes. Sometimes healthy women have problems or worse during pregnacy and sometimes sick woman do just fine. I did pretty good w/my son. My mind is racing. My legs hurt. I can only take this day by day. I will prove that anything is possible and dm will not take my happiness.