OK -- here I go again with the complaints, but I have to let it out somewhere! Especially for the newbies, MS has been my companion for 36 years so please don't think this will be you in the near future.

The constant nerve pain has been a "12" ever since this HOT weather arrived. I'm sure it's bothering everyone, but it's really kicking me in the b--- this time. Why in the world do I have to deal with this severe pain all the time? Never a break or a let-up? My neuro had told me there was going to be a clinical trial locally of a new pain med, but so far nothing. Guess another phone call is in order.

The "bladder problem", that sounds nicer than "incontinence", is just as bad. Supposed to have an appointment with a urologist this week, but now the only way I can get there is by the transportation van. My DIL who took me before, is afraid I'll fall during transfers or that she'll hurt her back trying to keep me upright. I totally understand, but have a real problem sending in the form asking for transport. Don't know why it's such a big deal for me, but it's just acknowledging another thing this disease has taken away. As far as the uro, they're thinking of putting in an intra-pubic catheter so I won't expend all my energy at once during the two to three hour sessions of trying to change my clothes.

The spasticity seems to be worse. It's really difficult bending my legs enough to make them stay on the footrests of my "chair". Then the weeping edema is attacking full force from my swollen legs. Some of the blister-type thingies look like yucky growths on my lower legs with slimey lymph stuff rolling down my legs.

To top it off, my right arm is getting noticeably weaker. I really count on my arms being my legs don't work. Can barely stand for a couple minutes.

I am so sad. All I seem to do a good part of the time is What do they really mean by "quality of life"? If an animal was in this condition, we'd think about the inevitable. Being human, we just have to suffer.

Sorry to be so depressing, but there isn't anywhere else to turn. This isn't living, this is torture. All right............I'm done now.

Judy

I found this blog....it's really daily devotionals for those of us with chronic illnesses....but it has really helped me. Scroll all the way to the end. There are some wonderful words written there. I hope it does the same for you.

http://chronicillnesspaindevotionals.wordpress.com/

I'm so sorry, Judy, and you certainly have a right to complain! That's a load of stuff to be dealing with. Any one of them would have me wailing. (I'm glad you pointed out for the sake of the newbies that such severe symptoms are not inevitable)

With all the advances in medicine, it's a shame that anyone has to suffer as you do. Yes, you DO need a place to let it out sometimes. Thank God we have this safe place to do so. These are the times that the rest of us don't have real answers, but plenty of support and prayer.

Whine away! I think we should start our own choir. Today I have the high notes, and you have the low ones. Hugs!

Hi Judy. I hear you and I asked God why? The only way that I can justify it is to think that it's the devil causing our pain and frustrations, Not God. I pray every day for God to keep the devil's power, pain, rage, evil, jealousy and temptation out of our lives.

I think it may be helping me some, I'm hoping? Anyway, I no longer blame God for everything bad that happens to me, but blame that Angel of God, who wanted to use his powers for evil, who God then Bannished to h e ll.

I will pray that God keeps the devil out of your life as well. Hope it helps.

KELLY, that is nice, thanks, Sally

I'm so sorry, Judy. "Quality of life" does not seem to be there. The only positive thing I can offer today is that I've come to love traveling on the little bus that comes to pick me up and take me to the dentist or the doctor. I don't use it all the time, as I can drive, but I have to use it when I am really sick or when I am pre-medicating for the dentist (I take demerol before dentist incursions so the needle won't hurt as much).
I am afraid I agree with Sally that we are under attack. I pray every day for protection from evil "within and without". The "without" is obvious--all the things that attack us, like pain, death, increased loss of function, financial problems, grief. The "within" is our own meanness and despair that can arise from being continually under attack from without.

It is a very difficult life. I had a good day yesterday, but I know it won't last. At least it's cooler and raining here.
Prayers for you, Judy.

Thank you, thank you, wonderful friends. Your love and support mean the world to me. I totally agree that Satan is overjoyed when we're feeling such despair....we'll blame it all on Adam and Eve.

The devotional site you provided is a real blessing Kitty. Thank you. Sometimes it seems to me that some devotionals for general use, are too much "pie in the sky" type of thing. Bad things really do happen to good people and a touch of reality is desperately needed.

Dej....the low notes are perfect for me since I'm an alto anyway! So true though that every day is different and we never know which end of the stick we'll end up on.

All of your prayers are so much appreciated. I find it difficult to pray on really bad days....too much pain to even think. That's why this place is perfect for us....we take turns holding each other up when our own strength isn't enough. Thank you all for being there.

We love you, Judy. Your strength and perseverance is a real blessing to me.

Kitty! I went to the Chronic illness devotional blog, and I am so glad to see this site. I couldn't read it yesterday when your link showed, because my eyes will take only so much puter time now. I will probably need to shell out for some puter-only glasses--sigh, another expense of being chronically ill! But then, the blog would teach me to be thankful that I do have enough saved to do this, buy the special glasses. Every time I think about my financial support I think of how gracious God was to send me my husband, whose pension is keeping me afloat--i have my own pension from teaching, but it's much smaller, as I was paid less and had to quit early. And our savings got whacked by the fire of 2000 and non-payment of insurance, which disallowed my disability (long story which many have heard).
Well, I agree that the blog you provided, Kitty, is great because it is not one of those sugar coated ones. I avoid ministries and individuals who claim God will heal me, and look "knowing" about their own inner knowing; this is because I have long experience with spiritual healing. I WAS healed by a couple of ministries long ago, before I got two more diagnoses, Porphyria and Polycythemia Vera; that is, I was partially healed, just enough to let me know God was there. My right eye (once again bad because of the smoke we had a few weeks ago) was instantly and completely healed of Optic Neuritis which I'd had for eight years, and the healing was permanent for over 16 years. I was also healed of foot drop in another ministry where a young woman prayed for me after the service. But many other prayers have not healed me; perhaps they have kept me alive and functioning through many struggles? So, again, I appreciate this blog site you linked, Kitty. I still couldn't read it all today, maybe later; I bookmarked it.

I too am having a very bad time, Judy, not as bad as you are. I am holding my own physically but I have to decide whether to leave my family (my grandsons) and find an
Independent Living/Assisted Living place elsewhere. I have no family support here...my son does not help me, although, again, I am grateful I get to see my grandchildren (I will be babysitting three nights in a row this week). I am just overwhelmed with sorrow that there is no love in my family, except from the children, and I may need to find a place to live before I am too weak to move. My son's idea of a good place is something cheap (and therefore toxic) in a state i've never been to, where I have NO roots, and where tornados are endemic. I will have to be my sole helper, but I pray for God's help as well.

God bless us all, Mariel. What one of us needs another of us provides. We're all here for each other.......and maybe that's just the way it's supposed to be. I do pray for each and every one of us here.