Laughing instead of crying

Swwetp · Post by **Swwetp** » Tue Jun 26, 2012 11:53 am

So I have been doing everything the doctors have told me to do (the whole handful of them). The watery stools stoped but everything else got so much worse. I was down to broth and ensure for awhile and the pain in my hip and lower back. Well I have 2 kids and I'd rather do that again then to feel the pain I feel now. Went to doctor and she told me she has never treated anybody with this before and she will try me on this muscle relaxer to see if it helped. I was on it for 3 weeks (Baclofen 60 mg a day, 20mgs 3x) and the pain was still so bad. Then I started getting REALLY sick but this something was different. I was fading in and out, I couldn't remember things, and sickest I have been yet. (still learning how my body reacts to this thing LC and what these meds make me feel like)
Called my doc and she told me keep taking my meds and increase my baclofen by 20mgs for the pain. By the next day I couldn't lift my head w/o puking and I was fading in and out every 10 to 20 minutes. All I could do was lay in bed and cry, begging for anything to make it stop. Went to hospital w/o calling my doctor and was in for about 16 hrs. They said something about toxicty from the baclofen, white cell count down and something else. But they had me so drugged I could find my way out of a paper bag.
I am trying to get help with the state, with ssi, with anything and everyone keeps blocking me. I have no insurence and so the doctors keep shuffling me around and each one gives me new drugs and no will listen to me. I started a log of how i have been feeling (body not mind), what I have been eating and so on. But when I tried to give it to my doctor she just blew me off.
They want to put me on cause it is cheap, I am fighting this cause I have 11yrs off of heroin. I worked really hard at cleaning out my body from all the crap I did when I was young and dumb. Now I am sitting by watching these people destroy what I worked so hard to fix. Was in N.A. for 10yrs and now none of my friends will talk to me cause I chose to get my green card instead of opiates.
The state (dshs) says they will only help me if I work 7hrs awk and then SSI says the only thing holding me back is I work 7hrs awk. HOLY CRAP!!!!!!!!!!!! Are you joking? I think I now understand why in the old day people went out into the woods and just said screw it.
I don't know what to do anymore and my husband we are strangers under one roof. he is gone 16 hrs a day and we go days w/o talking. I know he loved me but now I think it is replaced by resentment. I can't blame him, it is alot to take on. But now I feel even more lost and scared.
Sorry, just needed to talk with someone.

MBombardier · Post by **MBombardier** » Tue Jun 26, 2012 12:29 pm

Don't apologize. Having this disease is depressing, and when you have an idiot for a doctor it makes it even worse. When you can't get your symptoms under control, and then personal issues are thrown on top of it...

All I can say is, don't give up. You can get your life back. Anyone who kicked a heroin habit is a strong person. I was a drug addict, but the worst I did was cocaine. I figured if I did heroin, there would be no going back. My hat's off to you for kicking your habit.

And I can identify with the marriage problems, too. It is so hard when you feel like you are going it alone.

We are here for you. I'm sure others will be along who can comfort and encourage you more than I can.

marg · Post by **marg** » Tue Jun 26, 2012 1:11 pm

Hang on in there, its rough when no one listens or understands, but they are very good listeners here, sometimes just talking helps a little,
your in my thoughts and prayers,
Marg

Post by **tex** » Tue Jun 26, 2012 1:57 pm

I can't believe that your doctor prescribed that stuff, and then told you to not only keep taking it, but to increase the dose. Is she nuts? You already had all the symptoms of a bad reaction to the drug, you sure didn't need more of it. The bad part of it is that withdrawal may not be so simple. If you were taking it long enough, you may have to taper the dose, to avoid hallucinations and/or seizures. Hopefully, you haven't been taking it long enough for that to be a problem, though.

LC qualifies as a disability under the Americans with Disabilities Act, as amended, which means that it should also qualify for SSI, but many members here who apply for SSI have to hire an attorney who specializes in SSI claims, in order to get their application approved, unfortunately.

With this disease, sometimes we have to laugh to keep from crying.

Tex

Swwetp · Post by **Swwetp** » Tue Jun 26, 2012 3:39 pm

I am in between trying to get a GAU grant while I file for SSI but as with the doctors, they just screw me around. Now I have these black streaks in stool and never had those before. So now I have nothing for the pain and can't see my doctor till friday. I think I understand now why people lose their minds and go crazy. Thank you all for your replies, If anyone has ANY ideas that I may have over looked, please share.

Tex-
Yeah, I truely thought I was gonna die for a minute. I had only been taking that drug somewhere between 3 to 4 wks. Yesterday I felt like a million bucks but today I feel so tired and my back and hip are so tight and painful, but other then I feel better today then I have in awhile.

Martha · Post by **Martha** » Tue Jun 26, 2012 4:10 pm

I'm really sorry things are so hard for you right now. If we were all there, we could

around you for encouragement. I pray that you get some relief from the pain soon.

Martha

Deb · Post by **Deb** » Tue Jun 26, 2012 4:20 pm

Swwetp, you'll find that you've come to the right place for help with this. There is a terrific support system here and we all want you to get well and feel better! We'll support and help you any way we can. Deb

Swwetp · Post by **Swwetp** » Tue Jun 26, 2012 4:24 pm

MBombardier
It shows you are in vancouver, I am in everett. Do you mind me asking you about your doctor? I have an aunt that lives there and I could always visit her and maybe see a doctor that has an idea about this thing?

DebE13 · Post by **DebE13** » Tue Jun 26, 2012 6:03 pm

I'm so sorry you are in such a low place right now but please don't give up. I can relate to the stress you feel in your relationship- it can make things very difficult. I thought I was dying about a year ago and I pretty much stopped eating and the biggest memory of the summer was moving from chair to chair throughout the day and night to rest. Keep trying and do whatever it takes to find a doctor that you can tolerate and focus on your diet. The progress (for me) is slow but there are improvements. Message me any time you need to talk or vent because it is so hard for others to understand. It's so easy to feel isolated but you aren't alone.

desertrat · Post by **desertrat** » Tue Jun 26, 2012 6:25 pm

Did you say you were taking Ensure? Are you still taking it? It has milk and soy, two big no nos with MC.

Mandy

Joefnh · Post by **Joefnh** » Tue Jun 26, 2012 6:44 pm

Swwept, wow you have been through a lot and certainly must have some incredible inner strength. I can't add too much except echo be VERY careful with Gluten Soy and Dairy.

Anything with gluten, wheat, wheat flour etc avoid

Anything with Soy, soybean oil, soy lecithin avoid...a phrase that's mentioned here for good reason often is 'Soy Is Evil'...and I agree it is.

Anything with milk, milk fat, lactose or dairy in it avoid at least for now

You may not be sensitive to all of these but just about all of us are sensitive to 2 of these 3 groups. This is a good safe starting point, you can figure out the details later, right now you need some relief. For me gluten or soy equals back and hip pain.

Another thought....you mentioned you have had back and hip pain quite severely. I'll mention this as I am going through this now. I have MC like you and I have Crohns disease in my small intestine. When you have a colonoscopy it only looks at the large intestine and the last little bit of your small intestine. With Crohns you can have watery diarrhea with lots of back pain and a colonoscopy won't detect it.

Did your doctor run a blood test that looks for the markers of Crohns disease? There is a simple blood test you can ask for called a IBD serology panel which is offered by Prometheus labs and it should be covered by state run insurance, it's a standard test for severe cases like yours. Its called "Prometheus IBD sgi Diagnostic"

http://www.prometheuspatients.com/Produ ... ostics.asp

This is important to check to make sure you are receiving the correct treatments. With MC most of us will do quite well in time by avoiding gluten soy and dairy. If you have Crohns it may take some meds in conjunction with the diet to achieve some relief.

I do hope you feel better soon, this sounds like a rough patch right now.

Take care

MBombardier · Post by **MBombardier** » Tue Jun 26, 2012 6:44 pm

My GI is really nice. His name is Dwayne Webb, and he is at the Vancouver Clinic on 87th Ave. I went in for the suggested colonoscopy at 50 (I was a few years late) and just because I mentioned I had diarrhea, he did biopsies and made the diagnosis. It totally blind-sided me, but he was looking for it. I haven't seen him in about 18 months, but at the time he was talking about treating patients with the Adkins diet, and diagnosed me with non-celiac gluten sensitivity just because I told him how well I was doing on a gluten-free diet. He had about 20 MC patients at the time. No doubt he has more now.

My PCP now is Christine Norton. She is also really nice and understands thyroid issues really well (if you may have thyroid problems) because she had thyroid cancer and doesn't have a thyroid any more. She is at the Vancouver Clinic in Washougal.

We used to live in Lynnwood, so I know just where you are, there in Everett. With Boeing, lol.

Denise · Post by **Denise** » Tue Jun 26, 2012 6:56 pm

Sorry to hear about your pain. Last summer when it took it's toll I thought I was dying and was trying to get finances in order for my husband and son. I never told anyone what was going on until I could not take it anymore and made an appointment with the doctor. I was very weak and looked like hell. He took one look at me and said you do not look good! After my diagnosis I found this forum. It is a lot to digest but I would not be where I am today without the forum and reading about the diet. ( that took me 4 months to believe I needed to do the diet) I am gluten & dairy free now for 6 months; at first it is a lot of work reading labels. I still have mishaps and pay the price! Sometimes I will just react and I cannot narrow it down. I do stay away from soy, not sure if I am completely soy free.

Hang in there! You can get your life back!!!

My husband calls my diet the "cardboard diet". However after 6 months he is now thinking he needs to follow it.

Polly · Post by **Polly** » Tue Jun 26, 2012 7:02 pm

Sweetp,

Your symptom of fading in and out could also be related to dehydration. At least that's the way I would feel when I became dehydrated. It's really important to pay attention to staying hydrated, especially in the summer. There is info in the newbie forum on this with suggested solutions.

Hang in there.

Hugs,

Polly

MaggieRedwings · Post by **MaggieRedwings** » Wed Jun 27, 2012 4:57 am

I cannot offer much advice other than to say stop the meds - taper off - and stop the ensure. You are definitely a strong woman and we are more than happy to support you. Your doctor - idiot! Sorry, other than Polly and my cardiologist, my opinion of doctors is very low.

Maggie