I am wearing my illness

I want to apologize. I wrote "To be or not to be?" Well, I am a total fraud. I am wearing it....all of it, in my flannel pajamas and the tears that keep pouring down my face. I was better then and God, isn't it easy to throw out there how one should be like this or that? SHOOT ME.

Having said that, this illness hasn't ruined my life yet. I can't say that. Even if it's true. I will not let this illness have that much power. I am too angry and I raise my fist at it.

After the 1200 mg. EDTA IV and the crazy 93 degree weather we had, and now being due for my monthly bill, I am sick. I am also thinking that the Kefir, which I love a little too much is making me sick. Dare I be so bold as to say that my intestines are really cleaning out. It looks like I gave birth to a snake! Everyday. This is rare. But, my intestine hurts and I am wondering if I should stop the kefir. Another thing I am trying that might be making me sick.

Sorry for the "too much information."

My CFS friends have advised that I need to accept where I am at right now and rest and stop trying to do so much. They are not being mean, but knowing me, watching me and seeing a pattern. It's true. And I have to do that. Because I keep getting sick and when I feel better, I immediately rush out. I need to stop it. I am not used to this territory. This half dead territory. I was able to push myself and part of it is loving my job. I love making jewelry and then it pushes me to sell it. I am so thankful to have a talent. That is the one blessing I am so happy about. I got an email from a woman last night who bought a very expensive piece. She just wanted to take the time to let me know how much she loves it.

The truth is, I sound positive and sometimes I am, but right now and many times I am at a low point. I can't keep up with "normals" and there are two guys that are interested in me. It is throwing me off and causing PTSD. Last year, as many know, I was in a relationship that was taxing to say the least. I was quite sick and he didn't get it. Most don't. What I have, which is even worse than CFS is Interstitial Cystitis. It came about after the CFS though, so it's related. I had CFS for years with no IC. I was in a relationship for 7 years with no IC.

For those who don't know what IC is, it is a swollen bladder where you have to urinate all the time. My bladder has ulcers in it. My ex was the first guy I had been with since the diagnosis of IC. I never knew, until him, what it was that I was dealing with. Everytime, just about, that we had sex, I would develop an infection. Sometimes I would urinate blood. I began to become frightened of sex. It was awful. He wanted sex all the time. I was becoming so sick from sex. The infections would cause my ears to ring, my CFS to completely blow up and my fibromyalgia to become worse. I started to feel worthless. I tried D Mannose with no luck. Then I had to take an antibiotic, just one pill with sex. But the whole thing was so traumatic for me....having to wash before, after, have him wash. It ruined it. The fun was gone. It became a chore for me. I remember when it used to be fun. I wanted him to just back off and be with me...without the sex but once a week. No can do. He "needed" it. It was a real eye opener for me, a year ago, to have IC and to realize...."wowwwww...what is this?" Another loss.

I have been grieving ever since. When we broke up, he told me that he thought I was a sexual person, and I am, but I am unwell. It makes me not want to go there with anyone again. Maybe I am too sensitive, but when I think of all of the negative things that have been said to me over the years by men, I just feel like why bother. I need a guy to worship me at this point and even more so, I need to worship myself and I don't anymore. That is the illness talking. I am too weak to worship myself right now.

And I sit here and the one thing that I always wanted, like most people is a love. Someone to love and be loved by. But even if they came into my life, I am too sick. I am in bed mostly anymore and I am having a hard enough time taking care of myself. But how I grieve for it.

For some reason, it consumes me. I don't know why. I have been sick since I was 18. It didn't consume me in my 20's or even 30's. It's only been the last 4 years that I have really come to obsess about a partner.

Maybe it's because my sister and father died and my mom is so ill. Maybe it's because I will be 40 in September. I don't know.

I do know that I am tired of this illness. I am not like most people on here who believe there will be a cure sometime soon. Due to having this for over half of my life, I gave up on that thought. They think it's this, they think it's that...I don't know.

Anyway, I want to apologize for being such a know it all in my last blog. What do I know?? Right now I am in my pajamas in bed, looking like death with my laptop on my lap. This is what I have energy for today. That's it. I am officially wearing my illness. Sometimes I am better, going to the movies and dinner and sometimes I feel like I am dying. I need to accept that this is where it is right now and rest. Let myself rest and feel what I am feeling.

This too shall pass....I hope.

Comments

Oh Hon. (((((Hugs))))) How I totally understand where you are at. I think you're better off without that guy that didn't care about your needs. I understand the pain of loss. We do lose so much with this illness.

I am hopeful though that we have a brighter future. Hang in there.

Btw, I found out I'm allergic to homemade kefir and the kind from the store just puts on more weight.

teej
 
Thank you for this post. But also thank you for your other one. No apologies are needed. I love that when you feel better you can touch into your resiliency and write about it. And now that you're having your "pajama" days, you're writing about this, too. I so admire your courage for saying this is what it's like for me today, and then coming back and expressing a very different experience from a very different kind of day.

I'm really sorry that you're having such a tough time of it right now. These have been pajama days for me, too, and I wish I had some really cool pajamas to spend my day in.
 
Grace...do you know that I love buying pajamas. I feel like if I am going to stay in bed, I might as well have designer pj's! Thank you. I thought I would admit that I too am weak and sad and angry and I do not always have a brave face. I am just like everyone else.
 
This is a super post, Spitfire. But I too liked the other one as well. Make them both bookends between which you document the ups and downs of this incredibly difficult, trying journey you are on, without apology for either. Because you are brave enough to post during highs and lows, you'll reach more readers, and help more people, who need to hear that very thing that day. Well done.
 
I am a male who has a wife with Lyme, Fibro, CFS and IC that makes sex painful.

There are a few things you should know:

1) IC has been associated with Chronic Lyme disease. See link for a recent article.
http://www.lymedisease.org/lyme_times/issues/lyme_times_issues_spring2009.html

2) Long Term high dose oral or IV Antibiotic therapy helps with Lyme disease and IC, the symptoms of which are identical to CFS and include ringing ears (tinnitus).

3) There are treatment options for palliative (pain relief) results. Here is a doctor in Houston, TX who specializes in treating IC. It has really helped my wife with pain on intercourse.
http://www.pure-hope.org/patient_story_leeza.htm

4) There is an aloe vera based lubricant that really helps with sexual lubrication used with IC patients that is highly preferable to any petroleum jelly based product, speaking from experience ;-) It's called Desert Harvest Aloe Vera Personal Gel.
www.desertharvest.com

5) Be honest and up front with any potential partners about your condition - Lyme (and IC burning on ejaculation for men) is sexually transmitted. It will be challenging to find a partner, but may I suggest looking in Lyme, CFS or Fibro support groups in your area. Even if you don't find a partner, you'll learn alot. You're not going to get a shot at understanding from anyone else and you're not going to infect otherwise healthy partners. Divorce between one chronically ill person and one healthy partner is very typical outcome. Be equally yoked as the bible says.

6) Lyme and related co-infections treatable with antibiotics and anti-malarial medicines are epidemic in PA. Find a good Lyme-Literate MD and read up, even worse denial of disease and access to treatments than CFS...really. Criminally motivated mass murder imo and no one with political power cares to side on the side of right, but that's nothing new.

www.ilads.org
http://www.lymedisease.org/news/idsa_lyme_hearing/index.1.html

Read "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub for history - the Osler's Web of Lyme and "Lab 257: Inside Plum Island" for the link to biowarfare.

7) If you read "Cure Unknown", you'll learn that Fibromyalgia is a b.s. diagnosis that was intentionally broken off of Lyme disease. In other words, it is a diagnosis indicating a lyme disease infection that can be treated with antibiotics.
 
Spitfire, I too enjoyed both the blogs. I'm sorry to hear things are rough right now.
I actually just had a relationship come to an end. It wasn't all because of CFS, but that was a big part of it. And yeah, I'm with you, it feels vulnerable. I hope you can rest, and I hope you can find the balance to keep doing the things you love like making jewelry.
Sending you all good vibes.
 
Thank you Firefly and about lyme...it is possible that it is lyme but that doesn't make me feel any better. I don't feel that the prognosis is that much better. I am not sure I want to be on antibiotics forever or to have an IV of them. I did that for mycoplasma and became quite ill. I am waiting for the test to come back from igenex. However, if it is lyme, I won't be totally shocked and perhaps that would explain all of my neurological problems. We shall see. I do know there is a connection between lyme and IC. My gynecologist in California, Dr. Metzger is a huge lyme advocate and she has always felt that I had lyme. Time will tell.
 
I'm really sorry to hear you're having a rough time at the moment. And I understand that no matter how many times you start to feel better, it doesn't make up for the terrible times that you feel so bad - like now. It's hard to get through the bad patches when you live on your own.

Everyone needs someone to love, & be loved by - that is basic human nature. I know that when you find someone who loves you for the person you are, the way you do things, your great sense of humour & your wonderful personality, someone who loves you unconditionally, you will recognise them in an instant & KNOW that they are the one.

In the meantime, I can only commiserate & hope that you start to feel better real soon - hang in there.
 
Well, I could shoot you, but I don't know if you'd be better off :D What I will say is, talk to me after about twenty years of feeling like you did when you wrote this and then see how much cheerleader you have left and you'll know where I'm at. I didn't go down easy, I went down kicking and screaming, just like you are now.

I do feel for you with the bladder problems. The bladder stuff was some of the first stuff I got. There were days I was awake 24/7 from it and wanted nothing but relief and there was none to be had. I think it's impossible to have sex with that. There's just no way, it's too painful and uncomfortable.

It just plain sux being sick.
 
Even the Igenex lab test is spotty at best. Trust your Doc more than the test. If you were on antibiotics and felt much worse, that is a typical jarisch-herxheimer reaction indicative of Lyme or a related spirochete infection.

My immune system is so compromised from a long-term Lyme infection and likely CFS from birth (I do believe CFS is a separate disease process with a separate pathogen(s) from Lyme), that my Igenex tests didn't show up positive until I'd actually been on antibiotics for years and started seeing improvements.

Antibiotics help and it's not as bad as you're thinking it is now. IV help the fastest and the die-off is less severe, but is more costly. If you're already working with a LLMD, congratulations! That is a huge deal in and of itself. I've done both IV, IM and oral abx and would say this: The fight or flight mechanism kicks in big time with CFS, Lyme, Fibro and makes stressful issues appear overwhelming. Just take it one nap at a time when things feel too overwhelming and ask your doctor for helpful meds as needed.

Hyperbaric Oxygen Therapy (HBOT) in combination with antibiotics really works, but be warned, this one WILL kick your ass, speaking from experience. But also gave me the quickest and longest lasting improvement I've had to date. There is a great HBOT facility in NJ that would be close enough for you to drive to depending on where in PA you're at if you end up going down that path. HBOT helps with cold hands & feet and mental issues pretty quickly and also with tinnitus (ringing ears) if can afford long term treatment and really helps you feel less fatigued, but to keep that less fatigued feeling it needs to be done on a regular semi-permanent basis it seems, like once per week or twice a month in maintenance mode.

http://www.juliashbot.com/

Also, if too fatigued to go to meetings, contact group leaders and can talk via phone or email and most will be very helpful with issues like this. I know it really helped me out to know what works and what to expect by talking with others in the same boat.
 
My igenex test came back negative. I just found out today. This is the 5th one I have had. They all come back negative. Hmmmm....not sure right now. I see a CFS specialist.

The HBOT sounds interesting. I live outside of Philadelphia, so not far from Jersey. I travel to a doctor in Jersey now. When you say it will kick your ass, do you mean I will end up in bed for days wishing for death? I am sick of that route. Really sick of it. No pain no gain, but too much pain can be a pain!!
 
Spit

I used to get cystitis after sex like you till I tried a homeopathic remedy, it was Cantharis I think and it shifted it in two days and I never had it again - it cured me. I was on holiday once and had my pills with me just in case when a nearby camper said she had it - and we were in a foreign country so a lot of bother for her to find a doc. I gave her my pills and the same thing happened for her - stopped it in 2 days. Anyway, hugs and hope you improve soon.

http://www.truestarhealth.com/Notes/2262002.html

Brenda
 
If your immune system is shot which is likely, it is no surprise the Igenex test is negative. They test for an immune response! It truly is perverse logic. Let's look for your immune response to this bug knowing you don't have an immune response because your immune system is shot.

The best LLMD's rely on the whole picture which is necessary as most of the tests for very deadly tick borne diseases are pretty much worthless.

HBOT can make things worse if you are infected with Babesia, a malaria like microscopic parasite that thrives in oxygen rich environments, so another good reason to have someone with experience in Lyme and related tick infections on board if you want to try HBOT. Babesia is estimated as present in 1/3 or more of East Coast Lyme infections in NJ/PA area.

Go to www.publichealthalert.org and look up in the archives for articles on HBOT - Julia of Julia's HBOT had a couple articles years back - 2005 to 2007 timeframe I think. You can also call or email Julia from the link above and she'll try and help you out. Download and read Dr. Burrascano's guidelines for clinical treatment on Lyme on the left side of main page and read for more insights also.

Each person's response to HBOT varies. Some immediately feel better, and HBOT alone without abx doesn't cause the massive die-off reactions, but conversely doesn't help as much if you actually have Lyme either. I saw a guy who did have a Babesia infection get worse and have to discontinue and go back and treat Babesia. The good news is the HBOT clearly identified Babesia as likely so he got the right abx to help him recover.

I can only relate my experience. I went there from Texas for two weeks of HBOT 2x/day. One of my symptoms was frequent severe chronic sinus infections. So bad I've had 2 sinus surgeries for sinus infections and many many rounds of antibiotics. After the first week of treatment, I noticed I was more cranky and irritable and slightly more insomnia. Like a really bad week if you will, but within past range of experience. Then I got the worst sinus infection I've ever had as far as drainage and snot is concerned the second week, which is a contra-indication for HBOT - you can blow your ear-drums if you can't clear them. With the help of heavy duty decongestants, I finished the second week only because I spent all this money just to do this treatment. I made it through, went home with the worst congestion and snot build up ever, but within a couple weeks of rest I resolved the sinus infection. I've had one sinus infection since when really run down, but it cleared up quickly with antibiotics - very unusual for me. My wife says I've fixed the sinus infection stuff finally due to HBOT with abx for only two weeks. So the experience was rough, but well within what I have suffered in the past.

I've had much worse die-off experiences, but you knew you were killing some bugs. With Lyme, if you start feeling too bad, you simply back off on your treatment until your system clears the dead bugs, which are neuro-toxic even when dead. Again, good place for a LLMD or support group for guidance as necessary. If you do have Lyme and are already "near death" with symptoms the best approach is easy does it. Don't go all Rambo like I did. I did the maximum amount you can do safely because of the distance and cost.

Do HBOT once a day for a week and see how you do or less. The only bad part about a slower approach is it can take longer, but if you're really that bad you need to take it slower. People who are really immune compromised can end up in the ER if they overdo it, especially early in treatment. Good detox program can help lessen die-off impact also.

www.ilads.org is good place to find a local LLMD in your area and to find resources.



I also had hands and feet that were like ice all the time due to vasculitis (swelling of the viens). I came home with hands and feet that were like hot packs. They still stay warm and I went there in like 2005, did two weeks of HBOT and none since.

After recovering from the trip/treatment, I noticed I was less irritable and during the treatment I had one specific dive where I literally felt like a brain pop if you will and all of a sudden some of the depression/negative thinking just went away like that!

For fatigue, it fades fast if you can't do it regularly. I felt more energy starting with the second week of treatment and that lasted noticeably for a few months, I think. The main issue with HBOT is cost. I went to Julia's because it was actually cheaper to see her in NJ and pay for food/lodging/travel than anywhere in TX. Used a bunch of miles and rewards I had built up when I was working to help out. Even so, it' s not cheap, so that's the big downside.

The Lyme support group leader here would do it every week if we had an affordable option in Houston. We don't.

Also, you'll need a doctors prescription to do HBOT, so keep that in mind.
 
Fibro-lyme-CFS. I appreciate all of your knowledge but I have to add....if you look for something, you will find it. Meaning, I know all about lyme. I know a lot about it. At some point maybe I will research this further. If I go to a lyme specialist, of course he/she is going to tell me I have lyme. When I went to a doctor who specialized in candida, they told me I had candida. So, at some point I may look into this but I am not going to pursue lyme right now. Maybe later. And there are so many LLMD's that are out of this world in expense and it's like they put a sign over their door that says "lyme specialist" and are they really? I am exhausted, I am trying to get better but right now I am being told I have lead poisoning and perimenopause so I am following that right now. All of these diagnoses' can honestly make one sicker. It's too much info, too much confusion and too much of trying to do everything when things need to be looked at one thing at a time.

Thanks for all of the HBOT info. I think the cost is too expensive however for this gal who is living on SSD and counting her pennies. Also, LLMD's are outrageous too. My friend is seeing someone who is $400 per appt. Ridiculous. I think it's a racket. These doctors should be shot. Sorry, but it's true. Her first appointment was close to $1,000 and all of his tests are not covered by insurance. NONE.
 
Spitfire - thanks for your honesty in your blogs about both the good and the bad. I hope that you improve once you slow down and rest and keep writing about your experiences.
 
Hi Spitfire, I just read your blog. Here are my thoughts:
1) Families are what they are. If your mother does pay for some expenses, and will give you half her inheritance, that's a good deal more than most people get. It could make a mother feel kind of bad for her daughter to call up, significantly in advance of any presumed projected death, and demand more than half the inheritance, which would cause problems with her son etc. I'm not sure illness is a justification for depriving another sibling of their inheritance. Perhaps just being grateful you will get half, and are getting help now, and leave it at that--would be emotionally healthier for all concerned?

I have never had any help from my family of origin anyway; my mother didn't even want me to move into the area near my family even if I was to go on disability--she wanted me to stay where I was halfway across the country. And although she and her second hubby have a mother/daughter house with a suite that is empty but intended for a boarder someday should they ever need the $, she point blank said I could come visit for up to two weeks and that was it. Basically, nobody could care less as long as I don't bother them with any problems, and probably my accomplishments irritate them. Families aren't made better by challenges, usually. The capacities of our parents don't change. In fact, sometimes illness brings out the worst in all, including ourselves.

2) I've dealt with bladder issues and found something that really helps, which is sour currants. It was by accident that I discovered them to help so much last summer and then I buy them online from currants.com. They will ship a five pound bag priority mail. There is an abundance of interesting scientific literature about sour currants (both red and black) and their anti inflammatory properties. A new study just came out on black currents helping chronic lung inflammation. It's worth a shot and cheap!

3) Hyperbaric can help some of your conditions, and maybe it's worth having your Mom, who seems to fund some doctors, talk to Julia Sudlyo, in NJ, which is where the other poster went. Even a once a week session at 1.5 might help you. There are also mild portable chambers around and they help, there are probably some in the Philly area, contact the manufacturer, OxyHealth, to find out what practitioners in Philly have bought them and use them.

One way to cure IC and chronic bladder issues from low grade bacteria that flare up etc, is to ozonate the bladder. Given my wimp factor, I could not make myself do it although it's a great technique as ozone dissolve biofilms as well as killing bacteria. Without any systemic side effects etc. It's something you might consider if you don't have the wimp factor like I do. But the sour currants have been really really helpful to me, and I eat them every day, and they're very tasty.
 
Jen,

thank you about the sour currants info. I will look into that. Is the ozone you are speaking of something you inhale or ingest? I have had an ozonator in my apartment before. It helped with mold.

About the inheritance, it is what it is. I agree that talking about the will may not be appropriate. Thanks for your thoughts.
 
Hi, the ozone--you get an ozone generator, probably the best one is from Saul Pressman, who is in Canada, and that's a bit expensive. Then you get an oxygen concentrator or you can use an oxygen tank. Anyway, you generate good medical grade ozone and then you use a cannula/catheter to actually instill ozone into the bladder. Well, my wimp factor is that I just can't face putting a catheter up. Folks with MS and quadriplegics and others do it every day several times a day in order to go to the bathroom, but I just can't do it. I thought I might but when the time came, I couldn't. And I do think it would cure interstitial cystitis, which is actually just chronic low grade mixed infection with biofilms. Even e-coli can actually invade the mucosal tissue if it gets chronic, and remain there to flare into infections (like you had with sex as the friction irritates or seems to do something to flare the e coli up). I've had some kind of low grade something for 20 years--probably a combo of some type of mycoplasma, e coli, candida, who knows. I'm sure I could completely rid myself of it with the ozone but as I said, the catheter thing stops me. I do know people who had much worse symptoms than myself who completely cured themselves with ozone. Once organisms have invaded the tissue and taken up residence, it takes more than a simple antibiotic to get rid of the underlying problem. However, inflammation perpetuates the process, and signals bacteria to multiply, so the currants are a very comfy intermediate solution.

Your new post about your mom was nice. We're all only human and it sounds like she does love you and will provide for you.
 

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