I decided to publish some excerpts from a couple of old private journals of mine. There will undoubtably be many people who dealt/coped better than me. I used them mostly symptom tracking and vents; i.e. LOTS of rants. 🙂
Just like anything else, it gets easier as you go along.
SATURDAY, MARCH 10, 2007
I call my Rheumatologist to get my blood results and his assistant says I DO NOT have Lupus or Rheumatoid Arthritis!!!!! Great news!! It’s like the 4th or 5th wrong diagnosis though, I am so tired. I will find out what type of inflammatory arthritic disease that i DO have on Tuesday the 13th. She wouldn’t tell me all about that, oh well. The past week has been really rough on my body, I’m walking as slow as a turtle and it’s putting a big strain on C.
THURSDAY, MARCH 15, 2007
I had my visit with my Rheumatologist yesterday and I got my blood tests results back…I have Autoimmune disease non-specified. In other words he couldn’t tell for sure what specific autoimmune disease it was. He said blood does not lie and that I have an autoimmune disease, but not any of the known ones like Lupus, Rheumatoid Arthritis and Scleroderma etc. He’s been a Rheumy for like 50 years and couldn’t figure out exactly what kind it is. It is frustrating to not know specifically so that I can read up and take care of myself according to plan. He is treating me with the same meds as for SLE(lupus), it’s called Plaquenil and it will start working to stop my immune system from attacking my cells, tissue and organs in about 2 months..
SATURDAY, APRIL 7, 2007
… then we went to the Smithsonian Museum of Natural History and it was jam packed with so many people I thought I was gonna scream, I’m hobbling through with my cane and people were kicking it as they walked by. I almost fell a couple of times, I felt like screaming. I made it about a quarter of the way through then I took a cab back here early because I couldn’t walk anymore. This sucks. I am glad I am here, but it’s the first place I’ve gone since I’ve become sick, and now I see how different I am. I have to use the walker or cane, it takes me foreverrrrrrrr to make it anywhere. I am in so much pain, I’m so PISSED at my body. It’s finally starting to sink in that this is the way my life is going to be.
We might take a trolley tour tomorrow depending on my body in the morning. It has like 17 stops that you can get out on and check out or stay on, doesn’t matter…
THURSDAY, MAY 31, 2007
FRIDAY, JUNE 22, 2007
… I am so frickin tired, I feel like a burning kind of buzzing go through my veins, it feels so weird.
I felt like my head was spinning. I really hate this disease and what I’m allowing it to do to me. I have been such a bitch to everyone, and I can’t seem to stop….
…My body is drained, but my mind is so much worse. I’m a little scared.
SUNDAY, JUNE 24, 2007
She never sees any other babies, the smile on her face will be etched into my mind forever….
…….Hey, this is getting positive! Lately all I can think about is my disease, I can’t break out of the pity cycle, it would help if I could just have a little relief from the pain. Just one hour, and maybe I could see that there is a light up ahead. Ok, I decided that i would put in pics that are happy, or funny.
FRIDAY, JULY 6, 2007
SATURDAY, JULY 7, 2007
Entry for July 07, 2007
SUNDAY, JULY 8, 2007
As I think I said earlier in this blog project, the shittier I feel, the prettier the picture. That’s some kind of balance anyways…
MONDAY, JULY 9, 2007
Grapes of Wrath
2 days till i see the asshole [dr. a-hole lol]. I have got so much to say to him I have to write it down or I will forget for sure with my foghead. I give him one last chance and if he puts up a wall, im firing him. It’s so scary though, finding a new doc that knows nothing about me, and no insurance, i hate not working. My mind is not thinking of any happy subjects so I’m outta here
SUNDAY, JULY 22, 2007
Today was one of the best days I’ve had in quite a while. After B and L left on Saturday morning, R, E and A went to E’s parents house for a couple of days. Even though I miss the baby so much it is so nice to have the house all to ourselves.
Friday was incredibly scary and hellish. 8 hours in the ER and many meds and tests later I was released. I still don’t understand what happened to me with my body flopping all around like that, but they sure weren’t concerned about it in the waiting room. I just felt like if I was going to die, they would surely notice and help me. I pray to God that that doesn’t happen again. Tomorrow I call [doctor] and [rheum] and see if they can put their heads together to find out what is going on in my brain.
Back to feelin good today, still the burning and head pain, but no chest pain, and I’m in control of all of my limbs!!!! Something to be thankful for 🙂
C and I are all alone, and Dad will be here tomorrow as well as the kids. It is soooooo peaceful here right now. Ahhhh.
WEDNESDAY, JULY 25, 2007
….well, maybe not the crappiest day, but I was crankier when I titled this. The burning is still here, I feel like I’m going nuts. I finally found something online about it, could be neuropathy, could be Guillian-Barre, at this point I don’t give a shit what it is, I want it acknowledged by my doc with some TESTS and dealt with. If I have to live with it, so be it; but I refuse to be ignored. The last time I saw [doctor] he said, “do you know how many people deal with this sort of thing” or some such nonsense and I said~I know I’m not alone, but I’m worried about me. I don’t want or need any nerve damage or worse. He thinks it is the prednisone, I don’t. Been on it too long…
I have weird bruises all over me.
I feel like shit.
This is very juvenile to list complaints.
I can’t sleep.
I feel like screaming.
It’s hot in here.
THURSDAY, JULY 26, 2007
…so I called his office back and left a message with the receptionist telling him~ if he is not going to refill until i see him, and I am in legit pain, why? What does this accomplish except unnecessary pain for his patient? I said have him give me a call then with some tips to keep my pain level below 10, because I do not want to go back to the ER this weekend for shots of everything to bring my blood pressure and pulse down to the living level. ER doc told me my high pain levels tricks my heart into high gear, leading to bps of 150/100+ and pulses in the 150s. His receptionist just said “oh”. She probably pictured some grey faced boney junkie on the line trying to get a percocet fix. I am so fucking sick of the stigma of chronic pain.
FRIDAY, JULY 27, 2007
I’m trying to get my butt out of bed. Got another call from [doctor] office today, I actually wished a chronic illness on him, immediately regretted it. I’m gonna try and go to church on Sunday and hope the building doesn’t fall down after I walk in. Been way too long…
…how did I let it get this bad? I got out of bed and realized I was thinking of the day and kinda mapping out in my head how I was going to make it through, and sleep through the pain, this is no way to live. I have to pull up my bootstraps and look for some one I can talk to to deal with my emotions. I must be awful to live with right now.
SUNDAY, JULY 29, 2007
Wow. Reading this brought it all back to me. This doctor was such an asshole. I had no insurance and I could pay in payments with him. I stayed and put up with his crap just because I didn’t have to pay the bill up front. I was broke. At some point I went doc shopping, I don’t remember when, what year…No one wanted me because of my autoimmune issues. I had to pay for the first visit with each of them, up front, and then they didn’t take me on as a patient…
TUESDAY, JULY 31, 2007
cut and pasted from (support group) board
I called [doctor] office today and told his nurse what has conspired, she was shocked. I have it now on record at [other doctor’s] office anyways, I’m sure [dr. dbag] won’t transcribe his psycho idiocy. P called me back from [other doctor’s] and said do not stop taking the plaquenil, dose down on the pred 1 mg every 2 weeks just like he said before and he will see me next month.I have posted a bit on my life’s rollercoaster a bit lately. It’s midnight now here, and I am almost calm enough to recall my surreal,unbelievable doctor visit today. Here we go A little back story first~ have had severe all over body burning sensation for past couple of months along with severe head pain. Went to ER once because all of the burning and pain shifted to left side.They did no tests, shot me up with dilauded and phenergan and sent me home.Couple weeks later, went to ER with the burning, head pain, but chestpain is what brought me in. When I arrived while I was being triaged,
my body started trembling like I was cold but I wasn’t, then my left
leg started kicking up in the air along with my arms, and my head kept
jerking around. I could not stop it, C said it lasted for 20
minutes, it seemed like forever, they put me in a wheelchair and
pushed me back to the waiting room where I jerked and flopped for the
remaining 15 of the 20 minutes. Chest x-ray, CT of head, IV fluids,
EKG, torodol, ativan, and dilaudid. Chest pains left, everything else
stayed, I refused more pain meds; nothing was touching it and I was
high as a kite. They released me after 9 hours.
I scheduled a follow up with my PCP which I had today. I told him I
had looked up the burning sensation and read about nerve pain,
Guillian Barre, etc and that I found that there are tests to find out
if that is what is happening. He stated that those tests are not
necessary, that it is all subjective, and in no way did I have
Guillian barre. I said I know i don’t have it, I just found that
there are nerve disorders out there that go hand in hand with
autoimmunity, and I really want to know what the heck this is so I can
manage it. No more pain meds to cover it up, find out what the heck
it is. He said no. He then said as he is looking at my file, did you
know that your last labs from the rheumy came back normal? I said
yes, Dr. (Rheumy) explained to me that that happens, they go up and down.
He then said that I do not have an autoimmune disease as it says in
Rheumys letter that I MAY have an autoimmune disease. Turns out he is
reading the first letter my rh sent months ago~ for the first time… I
inform him Dr.(Rheumy) told me that I indeed have UCTD, and dermatomyositis
per symptoms and (Rheumy’s) diagnosis. He is treating me with plaquenil and
prednisone and he suspects lupus but I do not have the 4 criteria
needed for dx hence the UCTD. Actually is MCTD since the
dermatomyositis finding. Anyways, he says to me “if you are so sick
and taking all the medicines, why don’t you just stop taking
everything~they are obviously not working” I say, “there is no way in
hell im stopping the plaquenil because just 4 months ago i could not
walk, had to have help in the shower, up the stairs, my joints were so
bad I wanted to die.”
Here’s where it gets surreal. He looks at me and says, “Is it
possible, that your are crazy?” I think he’s kidding so I say is it
possible that you are? And the the look on his face is regret, he
starts back peddling trying to joke, and then says, You are definitely
in pain, how much percocet do you need until I see you next month? I
am dumbstruck, this is the man I have been seeing for 5 years who
knows my whole life story, who I went to when this all started last
year, I am silent. I ask him “were you serious when you asked me if
there was a possibility that I am crazy?” and he says yes, then his
face gets all red, he grunts, tears up, lays his head on his desk, I
ask him if he is OK, he says hold on a minute, it is his ulcer.(omg, this was the weirdest thing EVER) It
looks like he’s having a heart attack and I actually get up to get himsome water, or get his assistant and he says no, he’s OK but his faceis in pain and he has tears. He then tells me I need to see adoc at (teaching hospital upstate) because my symptoms do not fit anything he has ever heardof, and I am the first patient in his career that he can’t “figure out”.
I walked out stunned, pissed.
That’s it. I have to find a new doctor with no insurance who will
hopefully work on a payment plan.
I know this was long, but I had to get this out.
FRIDAY, AUGUST 3, 2007
It’s Friday, a day like any other day….
I woke up this morning at 6, yuck. Got the full body burn goin on with the massive head ache. Must be a side effect of being crazy, hahaha. I so want to jump in the shower, wax my lip, shave my legs, mud mask my face and get the hell out of here.
SUNDAY, AUGUST 5, 2007
Nap from Hell
Is is possible I’m finally seeing a pattern in this burn head pain thing? I started to feel tired, just like everytime it gets really bad, and I layed down for a nap. I got up after and hour and took a percocet~ then woke up 4 hours later feeling like 5 miles of bad road. Behind my eyes hurts so bad I could scream. Every muscle in my arms and lower legs feel as if they had been clenched tight while i was sleeping. Ok, i just had to write it down so I don’t forget.
MONDAY, AUGUST 6, 2007
Entry for August 6, 2007
I’ve gotta snap out of this funk. I’m sure it’s not healthy to be so freakin self-absorbed.
TUESDAY, AUGUST 7, 2007
Entry for August 7, 2007
…. 5 a.m I came inside and sat in the living room in the rocker and I heard A coughing like crazy. R came out of the room and stood at the top of the stairs looking at me, she looked so young, and small, and sad. She said she’s having more nightmares and she doesn’t know why. I told her it was stress, shit there is so much stress here right now you can taste it. She came down and covered me with a blanket, it was so sweet i didn’t have the heart to tell her I was sweating my ass off. She asked me where i was hurting at, I told her all over and cried. I try so hard not to cry in front of my kids, I hate it. I took all the nightmares out of her just like when she was little, pulling them out with a big hug. Time has just flown by, my kids are grown.
THURSDAY, AUGUST 9, 2007
Entry for August 9, 2007
Tomorrow is dad’s colonoscopy and endoscopy, double whammo. I can’t even type about dad and today as it stresses me out to even think about it…..
Entry for August 12, 2007
WEDNESDAY, AUGUST 22, 2007
Entry for August 22, 2007
I’m tired tonight, and heavily drugged. At one point in the ER, I actually thought I was going to die. Looking back, I was going to say right here how melodramatic, but you know what~I thought something was going to pop and I would be dead. C didn’t have an idea of what was going through my mind as all I could do was squeeze my head together and moan and cuss. I was one of “those” people. How weird am i to think of that while I’m there, but I did. I became one of those loud, crying , help me please, ER patients…just glad I’m alive, really thought today was the day. I have dealt with some real pain in the last year in a half, but NOTHING like this. I never want it to happen again, I’m scared it will.
TUESDAY, SEPTEMBER 4, 2007
Entry for September 04, 2007
…A is down here putting shoes on C’s laptop as he is writing his service reports, he is such a good grampa.
Entry for September 30, 2007
….one more week until the walk for lupus. God , i hope i can do it. I don’t even know if I can make it to church in the morning. I really want to check out this new church, it’s not Catholic, but that’s OK.
SATURDAY, OCTOBER 6, 2007
Mad Hatter Walk and Roll for Lupus 07!
Today was the lupus walk, and it was fun! I got about 4 hours sleep before the walk, so I was really tired… Dad got real excited about the cause after he saw so many people and started talking to them. He was really surprised when he talked to this woman and she told him her story and she said she took plaquenil and prednisone. He said to me ‘you take that too!!!!’ yes, there has been no new drugs for 40 years dad, thank god i can tolerate the plaquenil or i’d have to go to something with more side effects….
I was disappointed that there were only 200 walkers. I really want to get involved in the chapter but it’s way up in Washington.
We got some great pictures, I loved the view from the path next to the river. C said he and i should try and get out more, yah, i have to force myself. I only get out when i have to now, and then i pay for it. I slept for 4 hours after we got home, but my spirits are so high right now, it overrides the pain. And i’m very thankful that we had the wheelchair.
SATURDAY, OCTOBER 27, 2007
Entry for October 27, 2007
….she doesn’t want to take on my pain management, but then again, she doesn’t know me. Just a couple of years ago you couldn’t get me to take anything but tylenol, and now i have to take more just to feel ‘normal’ and yet i still don’t. i saw dr.[rheum] the very next day and he was so happy i was seeing her. So, we’ll see. It was probably just one of those weird first visits, but she seemed to be very critical of my pain meds, and i felt like saying i didn’t ask for this. Never. I wouldn’t wish this disease on anyone.
…he didn’t draw blood because he drew on Sep 11 and my ANA was positive, but my sed and c reactive protein were normal. That means the prednisone is doing it’s job. My numbers have been getting consistently better over time, yet my symptoms have not. He says this is normal. But to give me a definitive diagnosis he wants to see them up high again. So i am going to have to go down 1mg per week he said until i couldn’t take the pain anymore then call his office and come in that day and give blood. Shit, i felt like that as i was sitting there, but i agreed. I’ve heard of that on the [support group] board, a doc trying to make a dx that way so i didn’t seem so crazy. Now i don’t know. I’m burning so bad in my legs and it feels like i have no cartilage in there. As soon as i see one of my ankles blow up i’m calling, i won’t do this forever.
Entry for October 30, 2007
I woke up this morning in full burn mode. the mornings are the absolute worst time ever. I start to wonder if i should set an alarm and take my meds in the middle of the night like some people do, exactly every 8 hours instead of 6 to make it during ‘awake time’. I can’t stand the burning and the pain, i don’t know how i did it for all those months with no regular pain meds. i had times where i didn’t want to live, now i see why. At least now i know i can get a little relief as soon as the gabapentin kicks in. I can’t believe a have a lifelong illness that has no fucking cure. I’m not even taking meds that will combat the disease, just the symptoms. I’m so pissed. rant rant rant, i guess that’s what blogs are for though, i sure can’t afford a therapist. ha
FRIDAY, NOVEMBER 2, 2007
[OK, this is me in 2013 adding some notes. Each time you see red font here in this passage is when I’m almost peeing myself while reading this because WHAT A DORK! My gosh, “i have tv shows and movies on this computer”!!! jeez. Going through this old blog and putting pieces of it in this blog is really trippy. Sometimes I remember the exact moment of whatever I’m posting about and sometimes I feel as if I’m reading someone else’s blog. It’s weird. Anyway, whoever’s reading this, yes. I totally freaked out over Leopard OS and all that it entailed in ’07. And, all of these posts I’m just cutting and pasting. I’m not changing all the grammatical errors. I was writing this to myself so I didn’t care at the time… 🙂 ]
MONDAY, NOVEMBER 5, 2007
I just now noticed that if you click on a picture it comes up big!
FRIDAY, NOVEMBER 9, 2007
Just called [rheum] office only to find out there is no nurse or medical assistant on fridays. NO blood draw until monday morning so i have to stay at 7mg or my sed rate could go down. Unbelievable. All for a diagnosis. He already knows it lupus because all the meds brought my numbers down, except my ANA is still on the positive side, now he wants to see it happen in reverse. I guess i should be thankful for most people don’t get a definite diagnosis for years because docs are afraid to say lupus. It is the great imitator.
…..I’m actually scared. If this disease can and does attack my joints, it’s only a matter of time before it goes after a major organ. And the prednisone kills your organs faster than the disease…..
A few months ago i came across a blog completely by accident. It was a woman named Carmen and she was blogging daily about her fight with Scleroderma. another autoimmune disease in the same family with lupus. Attacks your organs. Less joint involvement and more skin. Anyways, i bookmarked her because she inspired me. She was a positive person, each post she would put , 3 things to be thankful for, at the end. She had a husband named Mike, a son Dominic, and a really great group of friends and family that gave her support. I was following her wait for a lung transplant. She was excited and scared. More excited though, her disease was attacking both lungs and killing her. She made the list. The past few weeks have been rough for me and i hadn’t looked at her blog. I got on last night to find out she died on October 30. Her husband was continuing the posts as she fought for her life in the hospital. I can’t even describe my sorrow for a woman i never even met but felt like i knew. I pray that she is in heaven with no pain now and can look down and continue to see her son grow into a wonderful man.
I am hurting so im off.
TUESDAY, NOVEMBER 20, 2007Prayer
I feel very stagnant lately. I can’t find anything to keep me occupied, not even the computer….I’ve been doing alot of praying lately and reading my bible. It makes me feel so much better spiritually. I know God is watching out for me. Yesterday Dad was having a bad day mentally. We were in the kitchen and he wanted to know how to get to the motel that S is staying at. I kept telling him and he had a blank look on his face and i could tell he was getting upset that he couldn’t think clearly. I called J and told him that dad wanted to go back to bed so they could meet at the motel on wednesday instead. Even after finding out that he didn’t have to go to [city] he kept on asking me how to get there, he was so frustrated. Of course this set off a major anxiety attack for me and the more he talked, the faster my anxiety swelled. I ended up picking up the computer, putting it down, picking up the bible, putting it down. I couldn’t slow my thoughts down and all of my thinking was so negative. I worry about dad, i worry about the baby, i worry about R. I ended up shaking all over and i couldn’t stop the shaking. I got into bed and prayed out loud to God to please help me, give me the strength to help my dad and stop the anxiety. As soon as i said Amen, my whole body calmed down instantly. I’ve never felt so relaxed in my whole life. I said thank you Jesus and fell asleep.
Everything in my life is going to shit except my relationship with God……….
TUESDAY, NOVEMBER 20, 2007
WEDNESDAY, NOVEMBER 21, 2007
I am so sick. In the bed with my bathrobe on and beanie on my head. I got a cluster migraine that started on the way to [rheum’s] office. C and i get there and he informs me he doesn’t know what disease i have. Hellfuckinglo??? We knew that months ago. I dosed down on the prednisone and put my body through hell for this? His nurse tells me on the phone that he thinks i have early rheumatoid arthritis. He tells me i MIGHT have that. I don’t have lupus. He says i’ve been on the plaquenil and prednisone for long enough without enough relief so we have to go to more aggressive treatment. Methotrexate is a drug that was used for leukemia, it’s a type of chemotherapy. The nurse showed C how to give me the injection in the hip. I’ll just give it to myself in my thigh. Once a week on wednesdays. It makes me feel sick as a dog. My hair may leave my head. I don’t feel very strong right now, i feel weak and depressed.
C is out back spraying cleaner on the deck and bricks, and he is busting his ass and not very happy, i wish i felt better and could help him…. I feel overwhelmed and stressed out. Too much shit to do and i can’t do any of it….
I’m making C stop now and rest. R and the baby are back with mom and i can hear commotion and the baby crying and tomorrow is thanksgiving and there is too much shit to do and i’m out.
SATURDAY, NOVEMBER 24, 2007
the methotrexate is making me really really sick. My legs are burning as usual, but now there is a freezing cold pain that radiates from the inside of the bone outward. It is unbearable. And i can’t get enough sleep, it makes me really tired. will write more on my symptoms later, I can’t even stand to think about it. I’m so tired. I’m out.
SUNDAY, NOVEMBER 25, 2007
FRIDAY, DECEMBER 14, 2007
january 1st, the new year