Feeling alone witth this disease called Multiple Myeloma

If anyone knew me, they would say I was this vibrant, happy person. Very positive and full of life. What they don't know is that secretly I am so full of anxiety that there are times I do not know where to go or who to turn to that will understand what I am going through. I always look good, according to everyone, but inside I am a wreck. Every month I fell like I am holding my breath to hear the results of the blood tests that now rule my life. I continue to plow through all of the ups and downs and try so very hard to stop thinking about having this disease. My dreams have been disturbing recently, ending with large numbers 12-1-11, you see, this was the day I was diagnosed. Does anyone else feel this way or should I call in the white coats to take me away? I love humor, life, and want to be able to manage this bump in the road. Any ideas??

Welcome to the world of MM, I was diagnosed in June of 2011 the only difference is I have trouble sleeping. I have found that I need to grab hold of life and shake it good, get everything out of it I can. I stay very busy, praise God for the good days and just except the bad ones. I watch my numbers closely, even though the docs tell me not to as they watch the trends. Do not let it rule your life, its yours don't give it your good days. Enjoy them make them yours. Rejoice in them and you will find that the bad days are just a little more bearable. How are your treatments going I hope well. Tell the doctor about the dreams, you see it could be a side effect of one of the meds. Some of the ones used to treat neuropothy can cause weird effects, so be careful. You have been doing this for a while so you well know the effects the meds have, it gets scary. I have my issue's also, I try to ignore the most of them however it takes constant adjustment on my part. I have found that I constantly need to adjust to my new reality of my physical capabilities. I am still fully employed and have my own business so I do stay very busy, which is good.

God bless and I hope it gets better

Ideas, yes, I solved my sleep problems by listening to college courses on my iPad. Astronomy puts me back to sleep in about 4 minutes. I am always amazed when I hear something on the recording that I am hearing for the first time and the recording has been started over 100 times. Philosophy puts me back to sleep in about 3 minutes. Music keeps me awake and the drugs ruined my days. I also got very serious about a mild exercise course called the Pericone Prescription. It is available at most libraries in book and Video format. Dr Perricone covers diet exercise and vitamins. Saw him on PBS special.
I also journal…(26 years of composition notebooks which I use to document my life) with sections on health (I try to document every ache & pain and itch, every prescription, ect.)
Education, ( AHHA moments) and significant emotional events,

Tactics and strategy; I am a retired Fire Captain, I plan for emergency responses.
After analyzing my myeloma I began to develop a strategy of moderation. When I had to take 5 dexi pils I spaced them with 5 minutes and a spoonful of oatmeal between each pill. Same with all my drugs, minimal doses lots of spacing. This has resulted in very few side effects. Actually the only side effect I have ever had is tiredness. I also set out two quart jars of water each morning, making sure to consume one by lunch and both hours before bed time. Absolutely nothing to eat two hours before bedtime. Took tv out of bedroom. Blackout curtains and earphones with boring college courses still put me to sleep and back to sleep when I wake WORRING about something. There are many other tactics I use, most recently I was beginning to experience mild back pain off and on. After reviewing my journals I noticed that I was not drinking my full two quarts of water…kidneys sore?.. I upped my water consumption to 3 quarts a day and have not had any more pain in that area.

Oops, forgot to say “I love you” and I am sure you are special to a lot of people. So be special to yourself. Get busy with the living. Live the rest of your life…
I promise to live my life as an example to you and all the other of us who know how to live. The dying will take care of itself. Let’s live. And don’t forget to exercise your inner child. She wants to play. She wants you to play with her. You know what to do ! And your cells and genes are listening for your laughter !

Earl, off to play with the little one !
Enjoy the moment !
Any questions?

Hi Janet, I completely relate to your story, and no, you are in no way crazy. My journey started in November of 2012 with stage three MM, and such pain I could barely make it from bed onto the couch. Now, a year and some months later, after 9 chemo cycles and two stemcell transplants I am doing alot better, though I did not achieve Complete remission..... yet. I was so depressed the first 6 or 8 months, that I often fantasized about taking my own life to avoid the stem cell transplant and the pain I had gone through. For me it did take some white coats, anti depressants and anti anxiety to get me through (to this day I have to use them) I am okay with it, and boy did it change my life and my outlook. Though I still have moments that the reality hits me, I am back to being my own great self and then some. MM has given me a tremendous purpose in Life and because of it I am now a yoga instructor, teaching gentle yoga to other people with disabilities and Love Life in a way I had not done before (though I was as seemingly happy and possitive as you say you are viewed by others) Don't be ashamed to reach out to doctors or take meds (I used to be totally against them) and I am glad I found you on here. Today I made this video, I hope you will get something out of it, and share, share, share :>) Cherie