Talking about some of my health issues publicly has been quite a challenge for me. I typically gloss over less publicly acceptable aspects of being sick, and some things I haven't even publicly addressed. A dear friend of mine tells me time and again that I don't have to tell everything. It's my story to share as I wish. I share a link when I post a new blog on my Facebook profile so my friends know a new one is up. And I sometimes hesitate over what to say because there are people on my list that I don't necessarily want to discuss this stuff with. Anonymity would be nice, I think. I mean, does the person I went to high school with, who I never really interact with, need or want to know about this? What about the mother of a child my child goes to school with? I live in a small town and people need to talk. I'm now at a point where I don't think I really care anymore. If someone thinks less of me because my body has betrayed me on multiple fronts or because I am willing to talk about it because so many people I run into feel alone, then I suppose that says more about them than me. I have also noticed personal stories on this subject are severely lacking.
My last post touched on this but today I have decided to discuss it much more in depth. I have been fighting an autoimmune disease called Eosinophilic Cystitis. The bottom line of this is it's like having a raging bladder infection without having one. A certain class of white blood cell known as eosinophils have seeded into the wall of my bladder and cause constant irritation. Here is a brief overview of EC. If you read the link, you might have notice that it says the disease goes away after treatment. Awesome, right? About that... I have what's called a refractory case, meaning it doesn't respond to treatment. For the past year I have been through one treatment after another. God bless my doctor for continually looking for more ways to treat this that doesn't involve removing my bladder. We have done medications rounds- twice, steroid injections directly into my bladder while I was under anesthesia, 12 weeks of drug instillations (where they put a cocktail of drugs directly into my bladder via catheterization and made me hold it for 20 minutes), I got a second opinion at Mayo Clinic in Rochester, MN from one of the leading urologists in the country, and began a heavy anti-rejection drug called Cyclosporine. Currently I am 4 months into Cyclosporine treatment and it has yielded some positive results but hasn't fixed the problem by any stretch. Last week my regular urologist requested that I meet up with her colleague who would be the urologist who would perform surgery on me if that is the route that is needed. I met with this doctor and really liked her. She laid out a few options for me ending with where this wild ride may end up; bladder removal. I am down to two more things I can do before my back is to the wall and removal is my only option. I can continue with the Cyclosporine for a little while longer to see if it further heals my bladder, or I could try Botox injections to see if that helps. After that, cystectomy (bladder removal) is all that is left.
I've given an overview of what I'm fighting here and where I am in that fight. Let me tell you what it's like. Constant. Pain. It's like being stabbed in the pelvis all the time. It hurts to pee. I can't do things like go to a movie because I have to pee every 20-60 minutes. Road trips are a pain and getting stuck in traffic is a terrifying prospect to me. That timetable also applies to night time. The longest I have slept in the past 2 years has been about 3 hours and that was one time. Most nights I am up every hour. Combine that with the constant fatigue I experience with my other 4 autoimmune diseases and I think it's safe to say I'm living some version of hell on earth. This isn't information I'm sharing for attention or pity. I'm sharing in case someone else out there is struggling and wonders if they're alone. They're not. You're not.
Monday, February 19, 2018
Thursday, February 8, 2018
I'm back?
I was issued a challenge to reinstate my blog. A dear friend of mine who deals with disabilities of her own conveyed to me that she felt I could benefit from blogging and maybe someone out there could benefit from my endless rattling. Poor soul.
You see, since my last post I was diagnosed with yet another autoimmune disease. This brings my total up to 5. My current list is: Hashimoto's Thyroiditis, FSGS (That's Focal Segmental Glomeruloscerosis), PBC (Primary Biliary Sclerosis), Rheumatoid Arthritis, and Eosinophilic Cystitis. Since I last updated, it's also of note that I am still working full time, my son has grown exponentially, and I have adopted two bully breed dogs and most recently have entered a relationship with one of my biggest cheerleaders through my years of dealing with a defective body.
I get a lot of well-meaning sympathy from a lot of people. When they hear about my laundry list, their response is usually "I don't know how you do it" or simply "Damn". The bottom line to these diseases is I have them, they don't have me. I refuse to give them my spirit. As for how I do it? I have no choice. I have a son that relies on me, and oddly enough, a bunch of people who look to me for guidance on how to deal with this ish. The latter always confuses me. I don't view myself as a motivational person, but whatever floats your boat. I speak pretty openly about all of it because I figure if my journey can help one person, it's worth it.
So... here goes nothing.....
You see, since my last post I was diagnosed with yet another autoimmune disease. This brings my total up to 5. My current list is: Hashimoto's Thyroiditis, FSGS (That's Focal Segmental Glomeruloscerosis), PBC (Primary Biliary Sclerosis), Rheumatoid Arthritis, and Eosinophilic Cystitis. Since I last updated, it's also of note that I am still working full time, my son has grown exponentially, and I have adopted two bully breed dogs and most recently have entered a relationship with one of my biggest cheerleaders through my years of dealing with a defective body.
I get a lot of well-meaning sympathy from a lot of people. When they hear about my laundry list, their response is usually "I don't know how you do it" or simply "Damn". The bottom line to these diseases is I have them, they don't have me. I refuse to give them my spirit. As for how I do it? I have no choice. I have a son that relies on me, and oddly enough, a bunch of people who look to me for guidance on how to deal with this ish. The latter always confuses me. I don't view myself as a motivational person, but whatever floats your boat. I speak pretty openly about all of it because I figure if my journey can help one person, it's worth it.
So... here goes nothing.....
Saturday, May 14, 2011
Ok, Airhead
One thing I have noticed is since being diagnosed with RA I have become very absent minded. I catch myself doing dumb things all the time. For instance, tonight I went out to get the mail. As soon as I stepped out the door I smelled a skunk. I didn't want to get sprayed so I decided the mail can wait and turned around and went back inside. Dumb part? I locked the door behind me. Ummm.... yeah. Last I knew skunks don't know how to properly execute a B&E.
Being diagnosed with a new disease is scary and consuming. Especially when you learn the potential of said disease. This one worries me more than my kidney disease. But I am blessed to have a great medical team from my Primary Care Physician to my Rheumatologist. I also have a fantastic support system. You lose friends when you encounter a life altering illness, but I have also learned you gain a bunch too. The checks and balances of life I suppose.
Things have calmed down with me. My treatments seem to be working. I have worked 2 weeks straight without needing to call in. I have been able to mow and garden. Things look possible again. I do have new limits I have to respect but I can do that. I feel like this summer might just be a good summer. I might just be able to do some of the things I love.
Being diagnosed with a new disease is scary and consuming. Especially when you learn the potential of said disease. This one worries me more than my kidney disease. But I am blessed to have a great medical team from my Primary Care Physician to my Rheumatologist. I also have a fantastic support system. You lose friends when you encounter a life altering illness, but I have also learned you gain a bunch too. The checks and balances of life I suppose.
Things have calmed down with me. My treatments seem to be working. I have worked 2 weeks straight without needing to call in. I have been able to mow and garden. Things look possible again. I do have new limits I have to respect but I can do that. I feel like this summer might just be a good summer. I might just be able to do some of the things I love.
Wednesday, March 9, 2011
Wait. Who's Paying Who?
I was astounded today when I opened my mailbox and found an unsolicited copy of my patient notes from my Rheumatologist. Almost as shocked as I was when he gave me his e-mail address. I have 5 specialists I see regularly. I have a LOT of experience with doctors. Some good. Some bad. Some horrible. This was a first and I was just blown away.
Why was I blown away? Why should I be? I mean I pay good money for that information. I PAY HIM. He is, for lack of a better term, my employee. I am not a stalker. I am a patent. I deserve to be able to know what is being said about me. I deserve to be able to contact my doctor without having to wade through an entourage of MA's, RN's or some random dork who picked up the phone.Waiting a week to hear back is often times unacceptable. We live in an age of technology and patient empowerment. We need to take advantage of that.
Cut to the chase. As patients we are a part of our medical team. We are the most important part. We are the CEO. At the end of the day the medical staff goes home from work to their lives. This is our life. We have to live with decisions made and we need to be active members of the team. We owe it to ourselves and our loved ones.
How? Personally I keep a mental Rolodex of dates, dosages, procedures done, diagnosis given. I keep a file at home of copies of lab results and doctors notes. I'm an animal. When I was in complete kidney failure in 1999 I kept a journal. A 5 subject notebook of everything. I wrote down what I ate, how much fluid I drank, what meds I took, how much urine I produced, my blood pressure, daily weights and whatever else I thought was important. That book was my Bible. I carried it everywhere with me. I believe that book was an integral tool to my walking away from kidney failure. I was a member of the team that saved my life. I will probably start keeping a journal again because things are getting more intense. I can also tell from personal experience that doctors treat you differently when you are engaged with your health care. When you care, they seem to put a little more into it. Just a personal observation.
Why was I blown away? Why should I be? I mean I pay good money for that information. I PAY HIM. He is, for lack of a better term, my employee. I am not a stalker. I am a patent. I deserve to be able to know what is being said about me. I deserve to be able to contact my doctor without having to wade through an entourage of MA's, RN's or some random dork who picked up the phone.Waiting a week to hear back is often times unacceptable. We live in an age of technology and patient empowerment. We need to take advantage of that.
Cut to the chase. As patients we are a part of our medical team. We are the most important part. We are the CEO. At the end of the day the medical staff goes home from work to their lives. This is our life. We have to live with decisions made and we need to be active members of the team. We owe it to ourselves and our loved ones.
How? Personally I keep a mental Rolodex of dates, dosages, procedures done, diagnosis given. I keep a file at home of copies of lab results and doctors notes. I'm an animal. When I was in complete kidney failure in 1999 I kept a journal. A 5 subject notebook of everything. I wrote down what I ate, how much fluid I drank, what meds I took, how much urine I produced, my blood pressure, daily weights and whatever else I thought was important. That book was my Bible. I carried it everywhere with me. I believe that book was an integral tool to my walking away from kidney failure. I was a member of the team that saved my life. I will probably start keeping a journal again because things are getting more intense. I can also tell from personal experience that doctors treat you differently when you are engaged with your health care. When you care, they seem to put a little more into it. Just a personal observation.
Saturday, March 5, 2011
So Sassy in That Amigo!
I went to the store today in search of a pillow. I wake up every morning feeling like I have whiplash. I feel like a walking zombie. So my Mom and I packed up and went to Sam's in search of a pillow. A good pillow. I realize there are better places to go for a good pillow. I had to start somewhere. Word on the street is I am going to go through a dozen or more pillows before I find one worth a damn.
While at the store I almost ran into a woman on an Amigo. She startled me. When she whizzed around the corner and nearly ran into me, I looked at her and she said in a rather short tone "Excuse me!". I could feel hostility in her voice. I didn't give her any weird or judgmental looks, I didn't dwell on her. I simply said "Oh, sorry" and moved on. She was in defense mode before I could even launch an attack. She didn't know I wasn't judging her. She's been through this enough to be ready for anyone to judge her. She didn't know I have been where she was and may be there again. I wouldn't.
When I was pregnant for my son my kidneys flared up. I gained 80lbs of fluid. Funny how fluid looks like fat. Funny how people judge fat people. It was five days after a C-Section. I was so edematous I couldn't wear shoes. I needed clothes because I had been in a hospital for the last 7 weeks of my pregnancy and had none that fit me. People didn't know this. They didn't care. I was the fat woman in an Amigo. They looked at me and judged me. Not knowing my story. It cut me to the core. I acted fine at the store and cried all the way home. I didn't want to be sick and I didn't want to not be able to walk through the store.
I now find myself unable to tolerate "fat woman in an Amigo" stories. I also can't stand "they don't need to park in a handicap spot" stories. There are a lot of invisible illnesses that require people to take advantage of handicap amenities. To the people so quick to judge I ask: Do you know them and their condition? Did you need the spot/wheelchair/Amigo? Did it infringe on you in anyway? Is it any of your business? Why is it unless someone weighs 80lbs and is over 125 years old or has a cast up to their thigh do people feel the need to police others? I ask these questions knowing that people usually don't realize how harsh they can be. I've been that person long ago, before I knew what it was like to be the one in that scooter.
And to the sassy pants in the Amigo I say, go for it girl. I know why you did it.
While at the store I almost ran into a woman on an Amigo. She startled me. When she whizzed around the corner and nearly ran into me, I looked at her and she said in a rather short tone "Excuse me!". I could feel hostility in her voice. I didn't give her any weird or judgmental looks, I didn't dwell on her. I simply said "Oh, sorry" and moved on. She was in defense mode before I could even launch an attack. She didn't know I wasn't judging her. She's been through this enough to be ready for anyone to judge her. She didn't know I have been where she was and may be there again. I wouldn't.
When I was pregnant for my son my kidneys flared up. I gained 80lbs of fluid. Funny how fluid looks like fat. Funny how people judge fat people. It was five days after a C-Section. I was so edematous I couldn't wear shoes. I needed clothes because I had been in a hospital for the last 7 weeks of my pregnancy and had none that fit me. People didn't know this. They didn't care. I was the fat woman in an Amigo. They looked at me and judged me. Not knowing my story. It cut me to the core. I acted fine at the store and cried all the way home. I didn't want to be sick and I didn't want to not be able to walk through the store.
I now find myself unable to tolerate "fat woman in an Amigo" stories. I also can't stand "they don't need to park in a handicap spot" stories. There are a lot of invisible illnesses that require people to take advantage of handicap amenities. To the people so quick to judge I ask: Do you know them and their condition? Did you need the spot/wheelchair/Amigo? Did it infringe on you in anyway? Is it any of your business? Why is it unless someone weighs 80lbs and is over 125 years old or has a cast up to their thigh do people feel the need to police others? I ask these questions knowing that people usually don't realize how harsh they can be. I've been that person long ago, before I knew what it was like to be the one in that scooter.
And to the sassy pants in the Amigo I say, go for it girl. I know why you did it.
Friday, March 4, 2011
I Made It! Well, sort of.
Alas, it is Friday. This marks my fifth day in a row of working. Doesn't sound like much but this is the first time this year that I have been able to work 5 in a row. The only accommodation I needed was to go in late today. Last night I was so exhausted I wanted to cry. Or pass out. I think about how I used to work third shift, 10 or more days in a row like it was nobodies biz. I miss that version of me. I'm still mourning that person although I have had 4 years of the new version of myself.
I'm still working out this RA diagnosis, it's still new. I now know my enemy and I will fight it. I will live my life. Mark my words. But I look back and I see the stealth attack that it mounted. It's been here since I had my son and I didn't recognize it. I'm having a moment that I can only compare to when I saw "The Sixth Sense" at the movie theater. It all makes sense. The pieces finally fit. There is a sense of peace that comes with that. Knowing I'm not crazy (at least for that reason).
Now it's off to get ready for work. Maybe I will celebrate this week's achievement with a latte. Or a Cinnamon Roll. Or both.
Thursday, March 3, 2011
Inaugural Post
Well.... here I am.
I had the thought the other day that I should begin blogging again. It gives me an opportunity to ramble about the things creeping around my brain. It also gives my friends and loved ones an opportunity to see what's on my mind and hey, I might meet some new people along the way. I have noticed since I was diagnosed with Rheumatoid Arthritis that a lot of people with chronic illnesses blog. Foodies love to blog. Mommies love to blog. Well. Hell. I'm all of the above.
I can't promise to stick to any certain topic as I am a very random person. I usually have my own silly spin on the way things are. I love to laugh and I need to laugh. Life is hard.
I had the thought the other day that I should begin blogging again. It gives me an opportunity to ramble about the things creeping around my brain. It also gives my friends and loved ones an opportunity to see what's on my mind and hey, I might meet some new people along the way. I have noticed since I was diagnosed with Rheumatoid Arthritis that a lot of people with chronic illnesses blog. Foodies love to blog. Mommies love to blog. Well. Hell. I'm all of the above.
I can't promise to stick to any certain topic as I am a very random person. I usually have my own silly spin on the way things are. I love to laugh and I need to laugh. Life is hard.
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