[dishevelled]

how does everyone on here seem so strong?

by dishevelled on Tue Mar 05, 2013 6:52 pm

I have been sick for 1 yr. Low grade fevers, fatigued, so much more. The whole yr I have had this monoclonal spike in blood. I was told that I will have a bone marrow biopsy on the 19th. I am so scared. I am so tired of being sick and I feel like I can't do this anymore. How are you guys dealing with feeling bad all of the time? What did you experience leading up to diagnosis? I am trying to work and I get in my car and cry at the end of every day because I feel so bad.

[Arizonan]

Re: how does everyone on here seem so strong?

by Arizonan on Tue Mar 05, 2013 7:39 pm

Wow, one year is a long time. But if it turns out your biopsy leads to treatment, you could feel much better in a couple months. I too was very scared before diagnosis, but my first round of treatment greatly improved my health. All patients are different, but the diagnosis will help you move on to the next stage. And, after what you have been through, that should be a big relief.

Hang in there. Your fellow patients on this forum are happy to help you through it.

David

[Alex]

Re: how does everyone on here seem so strong?

by Alex on Tue Mar 05, 2013 7:49 pm

Yep, I hear you. Mine hit me like a sledgehammer, whole life turned upside down, ceased working and have gone from man around town, hair on fire, to sitting in my chair checking each weeks doctors appointments and counting the tablets.
BUT.....you adjust, keep going quietly along and wait for the front page news that some Norwegian or Japanese boffin has found some cure.
A new normal comes into play....rest, keep going, pay no attention to the bloggers who see it as a gift, or that they are a warrior!
Life is okay....not what it was bout it is okay.

[dianaiad]

Re: how does everyone on here seem so strong?

by dianaiad on Tue Mar 05, 2013 9:29 pm

I too am at the very beginning of this road and don't know where it will lead, but I think it's OK to be scared, to yell, to cry if you need to, and to talk to us. This isn't an exam we have to pass. It's just a thing we have to deal with.

However we deal with it, I have a feeling, is OK. Personally, I have no intention of being stoic. I'll gripe when I need to, cry when I want to, vent when I have to....and write a lot. Sometimes here, sometimes where nobody else can see, sometimes to people who would really rather not see.

I don't think that there are rules for this.

[LibbyC]

Re: how does everyone on here seem so strong?

by LibbyC on Wed Mar 06, 2013 7:45 am

Dear Dishevelled,

Hang in there - it can be so scary at the start. I am 4 years in on my myeloma journey and have been in remission for the last year (long may it continue). I was working prior to diagnosis but that stopped as soon as I was admitted to hospital. I haven't been in paid employment since.

Sometimes you will be stronger than other times. In your less than strong times surround yourself with support. Whether that be your partner, siblings, on-line forums etc. - whatever works for you. There have been a few times (at different stages of treatment) when I have said to my husband I dont know how long I could continue this for. But then I usually hold his hand and look out the window at the sun, my garden, my children, smell the roses etc. and I keep on putting one foot in front of the other (it got easier to do this). At present I am the best that I have been since diagnosis.

Take care and remember to rest,
Libby

[Multibilly]

Re: how does everyone on here seem so strong?

by Multibilly on Wed Mar 06, 2013 10:56 am

The more you know and understand about all your lab results and treatment opinions and the more you research on this forum, the more empowered and calm I think you will become. There are lots of great treatment options out there and folks are living long, great lives with this disease. I went from being scared silly last November to being pretty calm about the whole thing once I really started to research everything and talked to several specialists about all my options.

I know it doesn't seem like it now, but you will feel better about the whole thing with time.

[LRichey]

Re: how does everyone on here seem so strong?

by LRichey on Thu Mar 07, 2013 11:24 am

My husband, 53, was diagnosed just about a year ago. It does turn your world upside down at first but it is just temporary. And you do get use to a new normal. We have been very lucky because he has responded so very well to treatments and overall is feeling pretty good and is still able to work somewhat. The more I've read about it the more different everyone's situation is. I truly believe a good attitude is a must have. My husband had a great attitude from day 1 and he stayed very positive. Me on the other hand.....well I turned into somewhat of a basket case off and on for a while but am much better now. I'm sorry that it has taken so long for you to get to this point. If you do indeed get diagnosed with multiple myeloma don't fret. The treatment available now has grown leaps and bounds from what it was. Take care, get lots of rest and keep us posted. We are all here to help.

Liz

[Cajun Girl]

Re: how does everyone on here seem so strong?

by Cajun Girl on Thu Mar 07, 2013 10:41 pm

Dear multiple myeloma Buddies, I was diagnosed in Feb 2011. I had been having significant pain for 3 months, but symptoms for several years. It took 3 months and many, many doctors to get the multiple myeloma diagnoses. The first bone biopsy I had (I did not know this was supposed to be painful) I jut laid there on my stomach and prayed. The doctor asked if I was okay I said "Yes, I am praying" He proceeded and completed the procedure. When I walked out of the room, my husband and daughter were standing there with such a look of concern on their sweet faces. I said, okay, lets go home. They were in awe that I was not in significant pain. You see, while I was on the table, during the time I was praying, I could feel someone standing next to me. I looked over, and it was our Lord, Jesus Christ. At that moment, I could feel him pick me up and hold me in his arms. Really, I felt like the doctor was under me working on my back. It was such a warm loving moment. The I was back down on the table and it was all over. All of the biopsy's I have had since then have been 90% pain free.
That was when I knew that Jesus was going to walk me thru (or carry me) my journey. I have always loved The Lord, and always knew he was my savior, but thru this disease, he is an such a more important part of my every day. We are all going to die one day, but ask The Lord to walk you thru this journey. I am a very happy energetic almost 50 year young gal. multiple myeloma will be the end of me. Yes, life is not the same. I tired easier, I have pain where I did not use to, but I am still the same person and complaining is not for me. You can and will be okay. Believe in yourself and your doctors, but most importantly, believe in GOD.

[Disciple]

Re: how does everyone on here seem so strong?

by Disciple on Fri Mar 08, 2013 10:49 am

Dear sister Cajun Girl:

Mike here, relapsed after a stem cell transplant and receiving 7th round of carfilzomib.

I know the Lord too, so please send me an email to mike@mikejbaron.com

Blessings,

Mike

[GeorgeLJurak]

Re: how does everyone on here seem so strong?

by GeorgeLJurak on Fri Mar 08, 2013 4:09 pm

To Cajun Girl :
The best advice I have heard yet. Worrying and getting all worked up about procedures, tests and the multiple myeloma diagnosis, does not help alleviate any of the issues. However, trust and faith can make all these things bearable. God Bless