Help..............need answers

Hi Elaine,
Yes, unfortunately, that is all part of DD. If you are trying the noni/gse combo, give it at least a month to 6 weeks. Many feel worse at first. Make sure you drink lots of water to flush the impurities the noni is breaking up. Some are feeling much better, but I don’t know if it will ever go away. I have a huge tumor under my knee too, and it wraps around from front to the back, almost completely encircling my left leg. Now there is a smaller one on my right leg, trying to catch up with its twin, I guess. Hang in there. You are not alone.
Pamela

Yes, the heat really does a number on me. I use cold water to shower. This morning I used luke warm water, and I didn’t stop sweating for an hour afterward! That makes it impossible to get dressed and get anything done. I have memory lapses too, but not to the extent you describe yet, thank God. It is very disturbing to forget where you are going or why you were going there! I deal pretty well with all the physical stuff, but losing my mind really scares me.
Of all the things I’ve lost, I miss myh mind the most…
Pamela

Its all so familiar the pain is always there. The lumps on my arms and legs growing all the time. The memory lapses are causing me more problems than any of these days. I cannot concentrate very well at work and I forget things that I have been doing for years. I get sidetracked so easily. Frustrated to the point I just want to scream at everyone the shut up and let me think! That would be a disaster considering I am at the front desk! ha. I feel likes its all slipping away from me and I can’t do anything to stop it.

I can’t quit though I need to earn enough to pay for all my meds. I have insurance but I still take so many the copays all add up. Not to mention everyday living expenses. I know I need to start the disability process but we all know that will take years and I just am not up to that fight yet.

I really don’t want to stay home all the time. I am already depressed now. If I stay home it will completelyl take over. I just don’t want to do that to my family.

I have thought about trying to find a way to work from home. Maybe doing transcription or something like that just don’t know where to start with that.

God bless,
Brennie

Some thing new?? I am going crazy…A friend sent me an email and I read it so wrong…But I didnt realize it until after I sent her 4 emails ragging on things and getting so mad I said things I cant take back…This isnt the first time I have done it…Please someone help me understand what’s happening to me…Is this because of DD or am I really losing my mind?? I am sooooo much more forgetful too…I can go into a room only to forget why I did go in the room…My husband laughs sometimes at what I forget but its not funny to me it makes me mad…Is this ever going to get better?? I dont want to be useless…Im trying to do something to keep my mind active if not my body…Also the Social Security Dr said he couldnt feel lumps on my spine…hate to tell him now there are many lumps there…and the pain is back…I am taking Neurontin AND Tramadol(not together) …I wait an hour after the Neurontin to take the Tramadol but mostly I take it at night so I can sleep without pain(much pain) it wears off usually…I need to make up with my friend but I dont think she will hear me…any input there??? It sucks to be me//I told her I wish I had cancer - at least there would be some understanding for my actions…

I hear ya, Brennie! I could have written that myself, aside from the mention of a husband,lol. I can’t face the prospect of filing for disability. There is no one to keep me afloat financially while I go through the process. I don’t know what I’ll do when I lose the ability to do my job. It is very scary.
Pamela

Hi Elaine,

I think most of us are experiencing the forgetfulness. Every time I go to another room to do something, it seems I have forgotten the purpose of the trip. It is frustrating, but remember that happens to everyone to some extent as a part of normal aging. It is just hitting us harder (and younger, in many cases.)

I think it is important to read and re-read our email and, if something makes us mad, leave it for a while and then read it again before we respond. The problem with email is that we can’t hear tone of voice and sometimes we misunderstand the writer’s intent. I have been on both sides of that situation and it isn’t pleasant either way. All I can advise you to do is to apologize profusely and explain what happened and what you are going through right now. A real friend will understand and forgive. If your friend has this disease, she should understand what our minds do to the written word. If she doesn’t, it may be harder to make her understand. The combination of constant brain fog, pain and stress can make anyone a bit touchy. That is how misunderstandings happen, IMHO.

Hugs and spoons,

Pamela

Brennie, I do too feel the same. I told my husband in a way its sad to say i wish it had been cancer, cancer is treatable and pple understand it better. Not that i condone that awful disease too. Its all scary.

I went into the kitchen 4 yes 4 times the other night each time i went in i forgot why i went and after getting back into the living room i remembered once back in the kitchen i forgot. Now i am not talking miles here not even meters and not even feet, my kitchen is right next to my lounge. its less than 6 inches away.

Your not alone HUN!! honest. Its the tiredness thats got me lately, I feel i can sleep for a week, i am suffering chronic fatigue at the minute, I wish i didnt have to work, but i have to, my eyes feel so heavy and I am slurring my words thats if i can be bothered to talk, I am talking so slow i am actually annoying myself. my neck, right elbo, right wrist and lower back is so painful too, and the disorientated feeling i constantly am suffering is worrying too.

so you see you are definately not alone,

take care Brennie,
you can rant all you want, it does help

geordielass

I am so glad for Careplace to be a place I can vent some and askquestions…I am so tired…Lately I have been having to nap and where I used to just nap for 30 minutes its over a 2 hr nap now…I dont know whats going on…Thats the hard part of this…not knowing whats happeneing to me…I got a couple of house plants yesterday so I repotted them and put out some grass seed in bare spots, fed the outside animals and at the end of that I was way too tired to do anything else…I am relying on my husband for finances but he cant earn enough for me to follow the diet Dr H recommends…I wish I could but there just isnt the money and Social Security has been reconsidering my case for months now…I have no insurance so seeing a Dr more than the every 2-3 months is out of the question.Let alone seeing Dr Herbst…I am just trying to leave it all in God’s Hands but its getting harder to…I am trying…The pain in my neck and back was so severe when trying to put up a new shower curtain I got mad.I was going to stand on the toilet and do it but I couldnt get up and bumped my head that made me all the madder and I started ranting and crying and came very very close to trying to take my own life due to despair…I actually picked up a pair of sissors…I didnt do anything but I did think about it and pick them up and pointed them…I woke up and put them down…This is making me crazy…

it sounds like you really need to see a doctor, seems to me you may have some anxiety issues, anti-depressants do help, obviously they wont take it away, but they will help you cope.

try and find the time and money to see a doctor.

and just come here and rant away.

lots of extra spoons
geordielass

If there is one thing I have learned from this disease, it is that I need to take it easy on myself. It has been difficult to expect less of myself, but it has also been freeing. There are many things I used to be able to do easily that I can’t do at all now. When that happens, I ask for help from a healthy friend or family member. What seems like a big job to us is no big deal to them.

I too am taking longer and longer naps. I layed down for a cat nap one day last week and woke up 4 hours later groggy and wanting to sleep some more. The fatuigue can be overwhelming at times.
If you are having suicidal thoughts, please see your doctor ASAP. I have taken antidepressants for years and, until you have taken them, you can’t imagine how much better you can feel mentally. I know I couldn’t cope with the physical stuff without them. Please get some help. You don’t have to suffer such despair.

Hugs and spoons,

Pamela

I wonder now if she ever was a friend…she wont talk to me…but oh well…I can do without the stress…I also want to know if depression can “come and go”…Somedays I feel good and happy and somedays I feel like crap…so I dont know if Im depressed or what is happening…

I think most of have ups and downs. I know I do and somedays I really feel sorry for my family and the people at work. I go up and down like an elevator sometimes. Ha!!!
Yesterday was my 48th birthday and my son bbqed a whole bunch of really good food for the famiy it was fantastic. I tried to be up and cheeful, but I felt really bad and was so tired I could barely stay awake. I tend to be more than a little cranky when I am over tired. Afterwards I felt like I didn’t thank him enough, it was such a wonderful thing for him to do. He works so hard for his money and he spent a fortune feeding us this weekend.

I tried to enjoy myself but its hard to be cheerful when you feel like you just want crawl in bed and sleep for a day or two. Anyway I didn’t mean to go on but this disease does vicious things to our bodies and we have to keep our energy up for the fight, but thats a tough job so it stands to reason there will be ups and downs.

Love you all, hugs all around
Brennie

Yes, depression can come and go. If your happy days are very happy and your sad days are very sad with no in between, you may have bipolar disorder. Some of my family members are bipolar. It is a chemical imbalance and can be controlled with mood stabilizers. Please see your doctor! That could explain a lot of what you have described and you don’t have to live in such misery.

I know from experience how hard it is to lose a friend. Please go easy on yourself. Get treatment for whatever this depression turns out to be and then try writing her a letter explaining what was happening to you when you feel better. If she is worth worrying about, she will understand and forgive. Beyond that, there isn’t much you can do.

Hugs,
Pamela

Hi Brennie,
Happy Belated Birthday! Your son sounds sweet, just like mine. He did the same thing for my birthday. I hope today is a better day for you.
Hugs,
Pamela

Thank you…Another friend also says on days like that satan is probably
messing with your head - not wanting you to get closer to God…

Well Elaine, she may be right about that! Still, medication can work wonders…
Hugs,
Pamela

I think most people with chronic illnesses have problems with forgetfulness and sometimes, with moodiness. Why? First and foremost, because of physiological reasons. Second, because, hey, it is frustrating and discouraging to have a chronic disease and sometimes, you can just become depressed because of it.

A third reason can be a drug you are on. It probably isn’t the case or you would have noticed it when you first started, but I can’t take Neurontin. If I do, about 5/8 of the time, I’m a zombie and the other 1/8, a raving maniac. Flexiryl and Benedryl do the same thing to me…but I can take many other pain meds, muscle relaxers, antihistamins and anti-convulsants (what Neurontin was originally used for) without problems. Go figure!

Lindi, Now that you mention it, many years ago I took one dose of a drug called Ativan. It had been prescribed for a horrible spasm in my neck and shoulder. It turned me into a raving lunatic and I suffered short term memory loss for months afterward. When I told the doctor it had made me crazy and that I had flushed the whole bottle, he told me I "needed to face reality and take my meds."
Thank goodness he doesn’t treat illness anymore. He is a diet doctor now and I just hope he isn’t mistreating any of our sisters or brothers with DD or Lipedema.
Pamela