Grapes and Toothpaste

24 05 2008

I’m fighting insomnia while Jax is sound asleep. He had a hard job tonight trying to cheer me up. I tend to get severely depressed the first week after getting a new diagnosis plus I have the flu. Grapes and blueberries just don’t taste good when you’ve already brushed your teeth! It’s 4:30am and I’ve got insomnia..well, is it really insomnia if I’ve been sleeping all week? I definitely have had a crummy week.

READ ON FOR HIGHLIGHTS INCLUDING LETTER TO SASHA & A STORY:

“Hello Sasha, What peaked my interest is my fiance has RA, Chronic Pancreatitis and Interstitial Cystitis … all diagnosed in the past 9 months..” -Reader

“The commercial was on TV and there I was talking on the television about my bladder problems!!!” –True Quote by me–Sasha

I’ve also broken my cardinal rule and I’ve let this stuff really get to me this week. By “stuff” I mean the new diagnosis of hypothyroidism. Yet another very lovely autoimmune disease. So let’s see that makes: chronic pancreatitis (CP), rheumatoid arthritis (RA), interstitial cystitis (IC has been in total remission for the past 6 years), and now hypothyroidism. I’m a walking textbook of AI. I’m sure Jax wants to slap me into reality, but this week he’s been my cheerleader and trying to get me back on the right mental tracks. I can see he’s more distant though. I know he’s fed up with all of this. The trick for him is to stay engaged enough to deal with me – but distanced enough to protect himself. Being a caregiver can not be easy!!! I feel so sad that Jax is put in this position. it’s the last place I’d ever want him to be. I’d much rather be making mad, passionate love to each other in some swanky hotel in London….er..um… on a tropical island with no rain.

I got an interesting letter from a reader that made me so sad:  “Hello Sasha, Just read your Info from Jan. on SSI benefits & RA. What peaked my interest is my fiance has RA, Chronic Pancreatitis and Interstitial Cystitis … all diagnosed in the past 9 months. I am sure she would like to hear more from you. She is having a hard time coping with all this. Any insight would be great. Sincerely, Michael”

The letter made me think about how many of us out there must be dealing with
this biggest BS from autoimmune diseases. I certainly didn’t wish these upon
myself.  {Click to read the rest of this blog on topics such as thyroid,
Being a do-er, Getting nothing accomplished, and IC Diet}.–CLICK HERE–> I am a do-er, get things done type of person. I love adventures and seeing new places. I love my work an damn happy to spend all month getting my to do list accomplished. I enjoy good laughs and good friends. My personality is far from a sickly one. In fact, except to very good friends I try hard to never mention anything about having an illness. This week it was impossible to hide. How many times can you say you have the flu? At least this week it is true… but the hypothyroid issue just sent me to bed all week. I got nothing done, nothing accomplished, nothing at all. I feel so awful about everything right now and even wrote in my journal that it feels like I have screwed up my entire life.

I was forced to take off work all week. My funds are so low (in the negative) that I had to let a teammate go on Friday. I am so heartbroken. I feel like my whole life is passing me by. I know it is not and it is only a perspective change I need… but it does feel like I have ruined everything simply by not accomplishing anything. It’s simple to say “chillax, your life will be there when you feel better”, but will it? Everything I’ve worked for – will it really be there? I suppose we’ll both have to read in upcoming weeks to see if the new hypothyroid meds make a difference in this feeling.

No to address Michael’s letter. So, how did I get interstitial cystitis to go into remission besides a lot of wishful thinking? After having to inject my bladder with this nasty solution each day for a year and taking countless meds – finally – it was this stuff called CystaQ. I was on it for a month and then I was cured. I’ve had to take it off and on for maintenance, but I have been in remission for years.

In fact the most embarrassing story involves CystaQ. The company had finished their trial and I was a success story. They asked if I’d be in their television promotional for doctor’s offices. I agreed and had my camera shoot day. I never thought much of it, but did ask for three months free medicine. A few years later I was at a hotel with a super cute and smart guy… and OH MY GOSH!!!! The commercial was on TV and there I was talking on the television about my bladder problems!!! I was talking about how great CystaQ was and how my bladder problems were all gone. OH MAN – was I embarrassed!!! I’m not sure if they still run the ad, but I sincerely hope not!

But, back to IC: It’s very important to totally change your diet. It’s true that IC is totally related to food. NO acidic foods for at least a year. That means no wine AT ALL, grapefruits, oranges, acidic tomatoes (most are and you have to find low acid types to make sauces from), nothing that could possibly be acidic. This included coffee (which I cant live without but have to switch to tea after the second cup), and staying away from nonoxynol-9 condoms. They actually set off the whole thing. See a nutrionist if you can and let them know you can’t have acidic foods. Even if you only go twice have them draw up some food ideas for you to exchange your current diet with. Once i cut out acidic foods and kept to it for a year it has really helped eliminate the IC. I don’t think the CystaQ on its own would have done the trick. I had begun the diet three months earlier so that when the med started working I could really tell the difference.

But doesn’t it seem like all of this is related? All of these autoimmune diseases in two totally different people!!! That is crazy! I find it more than a coincidence and I look forward to starting up an offline conversation with Michael’s fiance!

Love, Sasha xoxoxox

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4 responses

30 10 2008
Tracey

I had IC about 4 years ago and saw a natropath who advised all sorts of restrctive diets (which I am still not convinced had any effect). She also advised me to take Gotu Kola and I am thrilled to say my IC disappeared and touch wood has been ok since. Unfortunately I am now about to see a rheumatologist as it looks like I may have RA (the reason I found this blogsite). I am convinced the two (IC and RA) are connected. What do others think?

7 06 2008
typeawithra

Kathy, Thanks so much for your comment. You are so right about diets not being a cure-all for everyone by any means. The same with medication. I have a friend that tried cystaQ and it didn’t help her at all. But she reacted much better to the IC medicine called … oh…what is it… Elavil. I had ZERO help from elavil after 2 months. I did take 1 month basically to have any effect from cystaq as well. Thanks again for your post. I wish we all knew what the 100% effective cure was from it!

29 05 2008
Kathy Doherty

Hi everyone,
I am an IC and PFD suffer (have had unrelentng bladder and tight pelvic muscle symptoms) for 2 years . The CystaQ sounds great.. Ive heard about it, but never read an actual patient success story resulting from it..
I’ve tried sooo many things and spent so much money on doc’s treatments, drugs, supplements etc that don’t work.
I also wanted to comment on the IC diet. I think everyone is dfferent when it comes to IC and what will help or not…I have given up every acidic food under the sun (even tried giving up gluten and sugar ( all the things that holitstic folks recommend) and followed the IC diet…I have not see even one iota of change from this food deprivation. I’m down to 99lbs because of this and cause of the constant stress of pain) ..my muscle tone has been affected and the slim but curvy body I once had is a skeleton..I wouldn’t mind so such if I had symptom relief ,but I don’t..
all the IC diets and those like it have done for me is create a huge fear of food and drink…the fear that anything I put in my mouth could be keeping me sick or hurting my bladder..It’s a great diet for those who need to lose a little weight…but for those of us who are thin by nature, it could be a recipe for malnutrition…. Granted I still stay away from the highly acid things like tomatoes, citrus, coffee,vinegar etc, but it’s made absolutely no difference!..
Just wanted to comment that that we are so different in where our diseases originated etc.. and that diet doesn’t work for everyone. I would imagine if it did work, you would see a difference in symptoms fairly quickly….
That CystaQ is something to think about tho..
Thanks for the suggestion…
Kathy

25 05 2008
Libby

I have 3 autoimmunes: Vitiligo (got when I was three) and hypothyroid and rheumatoid arthritis this year. I am convinced they’re all related. But maybe that’s good. Maybe when they figure out how to fix one they’ll fix them all!

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