New from Chicago

[Piggybutt]

Thanks to everyone, didn't realize how much it would mean to me to be able to talk to someone going through the same thing. Already learning more on here about it all. It has only been since Oct 16th since I was diagnosed, same day of my Kidney biopsy. I think I have a lot of questions for my Dr now that I am more informed and not so afraid of the answers.
Work is stressful and I was trying to power through this just like I had been with the pain before the diagnoses. Clearly I am not handling the meds very well so maybe time to take some time off from work and just take care of myself.

One question for everyone, how are your spouces coupling. I have only been married for 15 months and my husband seems to get overwhelmed when I try to talk to him about. I did tell him to come on here to read up and hoping he still does. I know this is as much a shock to him as me and maybe he just needs to accept it in his own time.

[Pete]

Hi Piggy,

My wife (of 44 years) has been very helpful as we got the disease under control. She accompanied me to doctors appointments when I was really sick. We developed a list of questions before we saw the doc (still do), and she took notes on answers and follow ups. She checks in on this forum occasionally and that helps her stay informed.

This disease can be pretty scary when you're flaring and having symptoms. I encourage you to have your hubby go with you on doctor visits so he can ask questions, express his concerns, and learn more about how he can help you cope. With proper treatment, you can have a nearly normal life.

[rebekah]

Welcome to the forum! I'm sorry you're dealing with all of this, but prednisone certainly has some crazy side effects, including insomnia. I'm on 50mg and can barely sleep. My doctor gave me Ambien and that helps, but I have heard melatonin helps too (you can easily get it at CVS or another drugstore). Talk to your doctor before adding any new medications to the mix though. The insomnia does get better as you taper pred. Like Pete said, cytoxan is hard on the body so stay hydrated. I was on cytoxan for 6 months when I was diagnosed and it made me super nauseous. I was given zofran to help, and also went through packs of gum and lots of apples (those 2 things always helped me with nausea).

I don't have any input on how my spouse copes with this... I'm only 23 and don't have one. But Pete has some great suggestions. I'm sorry you both are going through this when you should be enjoying your life together.

There is certainly a ton of information here. If you ever have questions, feel free to ask. There are so many wonderful people on here and always someone on to answer questions. It's important to have a great support team when dealing with wegs, and this site has been a huge help for me. I don't know where I would be without everyone here. I know you just started treatment, but I hope you feel better soon!

[annekat]

I'm not married, but am sure that not every spouse reacts in exactly the same way. It has not been very long, and I can well imagine the difficulty your husband has processing this information. I remember how I felt when first diagnosed, sort of a mixture of shock and wanting to believe it was something I could recover from over time, though I knew there wasn't a cure. Reading the forum was such a great help, seeing that a great many people go on to do the same physical activities and continue in the careers they had before dx. There is such variety in people's cases, the symptoms and severity, and the more different experiences you read, the more you will understand what you are dealing with. Some spouses have gotten involved in reading and posting on the forum, but I wouldn't say it is a large number. I think it is just a matter of time before your husband will see your improvement and find ways in which he can help and be supportive. I don't blame him for feeling overwhelmed this early on. I'll bet that will change and he'll become your biggest advocate.

[Donna-from-Philly]

I was 42 when diagnosed in 2011. My husband of 18 years had left me in 2007. I was raising two teenagers and in 2008 I met a great guy through work. Anthony was in the process of selling his house and moving in when I got sick(2011). For a long time he blamed himself for my illness. He has stayed with me and our love is incredibly deep. It helps for Anthony to be involved with the doctors. I think it helps him and my parents if I have him tell my parents about updates. They tend to be each other's support group. I also use a site called caring bridge to keep everyone updated on my condition. Then every conversation with friends and family isn't about your health. Your husband can choose to read it or not. Anthony doesn't. Just keep communicating yet be sensitive to the fact that sometimes they aren't ready to hear everything. My life is really good. We have found a balance. Like....We get hotels on the beach wherever we go so I can rest and he can enjoy himself without feeling like he is leaving me behind. Good luck. Although I am in Philly now I was from Iowa and moved to Mt. Prospect and Gurnee after college. So I have a soft spot for Chicago!!!
Donna

[MikeG-2012]

Clearly I am not handling the meds very well so maybe time to take some time off from work and just take care of myself.

I've learned over the past 2 years that you have to listen to your body. It will tell you when you are tired, when you need a day to recover, etc. LISTEN to it and don't over do it. You'll pay double when you blow it and overwork, etc.

One question for everyone, how are your spouses coupling. I have only been married for 15 months and my husband seems to get overwhelmed when I try to talk to him about. I did tell him to come on here to read up and hoping he still does. I know this is as much a shock to him as me and maybe he just needs to accept it in his own time.

I have an amazing woman walking with me on every step of my Wegs journey. Being newly married must be hard. Communication is probably the most important part of your relationship. But, be careful not to over communicate what you are going through. I have a friend that has another long-term illness, and his spouse really can only handle the condensed version of how he's feeling, etc. Unfortunately, you are both just going to have to work through this disease together, because unfortunately, it is here to stay now. I sincerely hope you can make it through the first part of the process, so the next phase will be easier.

Welcome to the best group of folks on the internet!!! (-8

Oh, almost forgot to say. I grew up really close to your neighborhood! I lived in Minooka for my first 19 years! Used to go shopping in Crest Hill a couple times a week. I dated a girl who was a Wendy's manager in Crest Hill. Oh the memories...

[Alias]

That must be tough going for you and for your husband so early in your marriage. Receiving and digesting news of a serious and complex medical problem is very difficult. My wife and I have "practice", since she is a breast cancer survivor. When she was diagnosed we had to deal with a lot of information and decisions, and adjustments to our life together. I took on the role of "scribe" at appointments, taking notes and making sure all our questions were answered. Years later, she is now doing the same for me and continues to be supportive and sensitive to the changes this illness is causing for us. If your husband can manage it, it might be helpful for him to attend some appointments in order to get a better handle on what is going on with you. But, as you say, it is also a matter of allowing time for the diagnosis and its ramifications to sink in. This is still very new to you so it will be a while before the dust settles.

I don't think you can "power through" any aspect of this illness. Fatigue and stress can only make things worse; as others have said it's important to listen to your body and understand what your limits are. With time and good medical care, things will get better.

[Piggybutt]

Thanks for the great advice everyone. Last week was a long, hard week at work and I decided to go on short term disability. Time to take care of myself.
My husband has been wonderful and very supportive, he just doesn't like to talk about it much.
I am learning to give him info in small doses and he seems to handle that well. Great idea to bring him on my next appt if he can get out of work.

Still not sleeping well and did get a scrip for sleeping pill but part of me is worried about having the cytoxan sitting in my bladder all night. So do i get a good nights sleep and do possible damage to my bladder or not sleep thru the night. Uuummmm.

[annekat]

I think the Cytoxan sitting in the bladder overnight is a valid concern. If you take it in the AM and drink plenty of water throughout the day, and then taper off on the liquids toward bedtime, I suppose that might be OK. But I'd make doubly sure to drink copious amounts of water during the day and as soon as you get up. It's hard for me to answer because I always get up in the night to pee and usually drink some tea before bed. I can understand your not wanting to interfere with the prescription sleeping pill, and most of all, wanting to sleep! I use melatonin for sleep; it knocks me out pretty well but I wake up a few hours later, and that's when I hit the bathroom and go back to bed. I could take another melatonin but don't. I don't know how it would be with a prescription sleeping pill, never having used them... Good luck figuring it out. I did take CTX for quite awhile so can relate to your concerns.

[Mas78]

I think it's wise you decided to use your short term disability. I had to be off work for almost 3 months to get better and to make it to all of my doctor appointments.
As for the cytoxan sitting in your bladder all night, I remember my doctor telling me to take it first thing when I would wake up, drink plenty of fluid and rest. I would sleep 8+ hours back then. So I would ask your doctor their advise but I bet they will tell you to rest as you do need it.