Showing posts with label Epstein Barr. Show all posts
Showing posts with label Epstein Barr. Show all posts

Sunday, March 9, 2014

Death in a Bottle

I elected to not take the Methotrexate this weekend. It was a difficult decision and one for which I have no doubt I will suffer painful consequences. But I was already suffering consequences from the decision to take it. Within one month of starting it the pain in my joints was 100% better. The trade off was that the glands in my neck started to swell and I developed some kind of severe pain in the side of my neck below my ear that rapidly worsened to the point that turning my head in certain positions was agony. I developed numbness along the bottom of my jaw on that side and if I kept my head in that position long enough, the numbness crept up the side of my head and down to my shoulder. I had no explanation for it.

It was obvious to me that something wasn't right. When I returned to the doctor about two months later, I told her the problem and she completely ignored it. Made no reference to the neck pain at all. I mentioned I went to my Primary care physician and she thought it sounded like torticollis. She didn't seem interested and did not check the neck and gave the lymph glands a passing probe. "Yes, they're slightly swollen."

I became more and more depressed, to the point I was spending a lot of evening alone in my house crying. I also mentioned this to her but she didn't feel it was an issue, despite the flyer for the medicine saying this was a side effect of methotrexate, as are the swollen glands.

The swelling worsened. Those under my arms were a bit tender. I was using heat and cold packs on my neck day and night when I was at home. They helped a bit. The neck pain and stiffness got slightly better. It has not gone away. But as of the morning, after not taking the once a week dose yesterday, my glands have dramatically shrunk. I've felt exhausted for a while now, as I think I've mentioned on here. I'd  have to look back but I think ever since I've been on the Methotrexate I've been more tired. Yes, I did hurt less in my joints but my quality of life has not improved.

I've felt for years that my situation was the result of a virus. I watched a video that scared the heebee jeebees out of me a few night ago and kept me up most of the night with what I heard. It was horrible. I will not post the link here. If you want to watch it on YouTube look for Dr. R. E. Tent and a video about autoimmune disorders. I warn you it is insanely scary and sounds like a science fiction movie of epic portions. That was just the first hour.

The second hour, which I skimmed because I was in shock by then, he talked about his patients. He indicated Epstein Barr is connected to rheumatoid arthritis, headaches, and chronic fatigue. Last year, the first five months of the year, I was sick with what my Primary care doctor said was a "recurrence of the Epstein Barr virus". I couldn't believe that then because the symptoms I was having were not familiar to me when I was sick last year. That's mono and I had never in my life had that virus. Apparently, I did. You can have mild cases or just be a carrier.

In light of what I know now, it makes so many thing much clearer. And instead of throwing poison at it there has to be something else. No, I have no idea what. I just know that I believed for years that my condition was the result of a virus. I have no idea why I believed that, I just have always done so. It acts like a virus to me. And no, I'm not a doctor but I read and I pay attention to my body. I listen to it.

So, despite the devastating effects that are probably in store for me with the RA and the pain I am very familiar with,  I see no reason to take a medicine that has, in four months, made me as sick, if nor more so, as I am with RA. In the video, he called Methotrexate "Death in a Bottle".

If you pray, if you know someone who is able to pray for healing please bring my name to their attention. If you take Methotrexate or have in the past, I would like to hear your experiences on it. And if you know of reputable alternative treatments to any of these, I want to know.

Tuesday, May 14, 2013

Amazing Recovery or Fluke?

Ok, maybe not amazing. I have no idea what has happened. I have felt so good today that I actually went out and put my flower seeds in the flat so they will spout. I may not get to plant them for two weeks but I'm good with that. If I could feel this good every day, life might be bearable.

I came home and prepared supper for me and Dave. Mike came in and so he ate, too. Dave had Sarah this evening so Sarah and I spent the evening in the back yard putting the seed in and even planting marigolds around the post on the patio. She loves planting things. She pick up her first wiggle worm, earth worm to those of you not raised in the South. It was hysterical. She squealed and said, "He's so cute!" Have I mentioned here that I tell her that her nickname is Ellie Mae? For those who don't understand the reference, Google The Beverly Hillbillies.

It was a good evening. I took some photos with my new phone and even a video which, when I save them, automatically uploads them to a G+ album. That is so cool! I have access to all my Google features - email, calendar, G+, photo albums, contact list. Everything! So nice to have. But I hate these honking big phones. I bet before it is over they'll be as big as the first cell phones. I loved my LG flip phone. Did what I wanted and all I had to do was say "Call _____" and it repeated it verbally, then it dialed the number for me. I can say that to this phone and it ASK me in text if that is the number I want, I have to then tap the text and then it dials. So, if I have to use my hands anyway, what good is that feature? And the constant need to recharge! I have always gone a week without recharging my phones. What is that about? Wimpy batteries or power hungry apps that serve no purpose.

Anyway, felt very good today. I actually think my problem may be blood sugar related. I'm going to get a meter this week and start checking it when I have that horrible feeling again. If it isn't blood sugar, I don't know what else it could be.

I go for a massage tomorrow to a therapeutic massage place. Dave working on my back and neck last night really made a difference and I'm so looking forward to the one tomorrow.

I have to start packing for the trip soon. I haven't even begun because I've been so sick I wasn't sure I'd be able to go. I still don't know what will happen between now and Saturday. One day at a time.

Must go now as it is getting late and I am trying to get to bed earlier each evening. Lack of sleep is making things a lot worse. I slept really good last night and hope for the same tonight.




Wednesday, May 1, 2013

More Wasted Days

I had about two good days after I saw my doctor and it has been mostly downhill since. I'm so tired and today I've had a headache all day. I am taking my second Imitrex now and hope that will get rid of it. I came home as tired as if I'd worked for two days with no break. The only bright spot is I may have defeated the sinus infection.

I don't know when it became such a chore just to put one foot in front of the other. I can't remember. I don't want to do anything. Even sleep is not good. I wake up as tired as I was when I went to bed. I'm tired of it. I just want to sit down and never have to get up again.

I go back to the doctor the last week of the month. I'm supposed to go on vacation beginning the 18th. I don't know if I will be able to go anywhere. I can't see sitting in the car for 12 hours feeling like this. It just isn't worth it.

Days pass and I don't know what I've done. I don't accomplish anything. I've been working on a shawl for two weeks. Last night I had to pull out five rows of work. I only had about 4 rows left but I did something wrong and didn't realize it until I reached a place that simply did work right. I had to back track visually and figure out what went wrong, rip it out and now I'm working on putting it back right. Normally, it wouldn't be a big deal but it is now. I don't have time to waste repeating work. What brief moments I have of clarity and strength I have to use for what must be done. I can't waste time on hobbies.

I looked at the yard and found a whole section that wasn't cut. So, now people want to cut the yard but only what they don't have to get off the mower to cut. I'll have to be the one pushing the old mower and using the weed trimmer for the places the rider doesn't reach, I suppose? This is ridiculous. Where did the real men of the world go and how did I end up with a bunch wimps? I'm embarrassed to say these people are related to me. I refuse to call them men. I've had nothing but trouble over the yard for years. They are the laziest human beings I've ever seen.

Enough whine. Another waste of time.







Saturday, April 20, 2013

A Beautiful Day in the Neighborhood

What a beautiful day it has been, if a bit cool for my liking. Right now at 5:50 p.m. it is 56 degrees and sunny. 
It was, however, perfect weather to do yard work. Mike and I got out and cut the yard with our new riding mower and all I can say is I wish I'd done that years ago. This huge yard is just too much to cut with a push mower. When I was younger, the exercise was good for me. It would still be good for me when I have good days. In recent months there have not been many. And I am saddened at how many times Jerry struggled to do while keeping his bad heart a secret.

Good news: Let me just say I feel about 100% better than I have in the last three months. I don't know what is in those pills but it is amazing. I think I mentioned that she gave me acyclovir, an antiviral med used in the treatment of shingles, herpes viruses, and chickenpox. I have none of those. They think I've had a recurrence of Epstein Barr. Which I never remember having at all! But she wasn't even positive of that. I believe EB is a herpes simplex related virus so I suppose it makes sense to take a med used to treat HS. I have to take it twice a day until I see her in two months. 

She also prescribed DHEA, an over the counter supplement. There are all kinds of information pro and con but my extremely low cortisol count was her reason for having me take it. I'm to take 5-10 mg but all the bottles I found were over 25! That's crazy. So, I'm cutting it in half and will talk to her about getting a smaller dose bottle. 

However, something has been a shot in the arm, at least today. I'm alert, virtually no pain, no anxiety, lots of energy, and well, just really good. If I can have this everyday I'll make it.

Now that that is done, I'm getting off and and working on my new crochet project.  A pineapple patterned shawl that I found online. It is going to be teal in color. I'll have to post it on Ravelry. I don't go there much but I do have a page. If you're a crafty person, it is a good site to meet other people who share your interests. 

Hope the rest of you have a really good weekend! Oh, had a response for  one of the jobs I sent a resume on. It is a local state job. They say they want me to complete some additional information as I appear to be a qualified applicant. {shrug} We'll see.


Thursday, April 18, 2013

The Results are In

And I'm no more enlightened that I was before. 

Back to the doctor today to review blood work and see what she wanted to do. She gave me an antiviral med - acyclovir.  I take it until it is gone and see how I do. I return in two months.

Although the test indicate I have Epstein Barr, she did not commit to it. She said that I could have has another virus that caused a similar reaction. What's up with that?

My cortisol was low. Indicating my adrenal glands were "getting tired". No, I don't know what that means except I'm under too much stress for my body to recover fast enough. How do you fix it?

Interestingly enough, the RA factor was only mildly elevated and the other RA marker was normal. Again, what does that mean? No idea. Apparently, I have no inflammation. 

Really? Then why are things hurting?

Anyway the acyclovir is to help me recover some of my immune system function. I also have to get DHEA and take that. I forgot it tonight. I got off at noon and didn't get home until six. David's friend arrived and we went to supper. I came home around 8 and have sat here watching shows ever since. I'm exhausted and I had to take an Imitrex. A storm front has moved in and it has been raining most of the evening. 

Now, I'm going to bed. I think I've had enough. 


Monday, April 15, 2013

Another Manic Monday

I was on my way to bed actually, when I thought I'd better post something. I went to work this morning, put my behind in the chair and basically worked myself to a frazzle. I'm tired.

What is a frazzle? I mean, I've worked my fingers to the bone and worked my self nearly to death. But what is a frazzle? Who thought that up anyway?

I've been sick as a dog for a month. I'm feeling better this week and I am praying that it last. But how is being sick as a dog worse than being as sick as I was? If a dog had been that sick ... he'd be a dead dog.

I love the language.

Moving on.... I didn't get to my actual work until after lunch. If this continues I'll be a month behind before the end of the month. I asked if we were replacing the receptionist. He said he was meeting with the ED in the morning to discuss some things and he thought that would definitely be on the agenda. Well, I hope so! Because now, we will each be on the phone a whole day ever week and we'll have a meeting three to four days a month, we'll be answer all our call, filling hundreds of pieces a paper a week, several hundred files, and processing all that paper coming in. Not to mention trying to meet with ever person who wants to tell you about their nasty neighbors.

I've applied for two jobs. I don't know exactly what they are but similar to what I'm doing. I'm praying for them to pass me over if this is not what is best for me. I don't want another job that will kill me.

Oh! I'm taking an online creative writing class and I'm really looking forward to this. I had signed up for Forward Motion, another writing clinic that lasts over a year. But I simply could not get into it. I was a few weeks into it when this sickness started and now I'm abysmally behind. Forward Motion is an ongoing writing class so I can try again.  The new one is a university class and is a series of video/audio lectures taught by Brian Sanderson. The class last several weeks. Your supposed to write 50,000 words in 4 months. LOL, piece of cake if I decide to write. I may just listen and take notes. Doesn't matter really. I'm not adding any pressure to it. Fortunately, I'm doing the 2012 class and it's recorded.

Anyway, very busy writing. I told my friend, Doug, today that I was no longer beating myself up about what I'm writing. I'm writing and that's what counts. That's what I want to do. I started the new blog and I feel good about it, if a little intimidated. It is different and I can already tell it is going to be a different way of writing. I'm not sure I'm going to have a lot of creative control. Frankly, I'm fine with that.

I got the notice that the Library let me reserve the room for my writing group on the 27th. We're meeting and talking about Character and Story Arcs. I like the monthly meetings on a Saturday afternoon. I am more relaxed and really enjoy it much better.

Keep me in your prayers. I'm moving things in my life and that is always hard and sometimes painful. While I am better, I'm still not over this sickness. I still get unusually tired over simply duties. I over did it Saturday and paid the price Sunday. I want to be better by the weekend because David has a friend coming to town he wants me to meet.

Once again, I'm up too late! Night!

Saturday, April 13, 2013

Real Ledge Living

I woke up feeling ok. Wow, amazing how that actually sounds good. However, I only started doing something in the last hour. Cleaning the kitchen and putting on laundry and mopping the kitchen. I sat down to eat and realized I don't feel ok now.

Let me preface that by saying I don't actually hurt anywhere but my neck and that is mild since I got up and did some stretches in my neck and shoulders. I'm just incapable of doing anything because of the tiredness.

I do think there is some swelling somewhere in my upper abdomen. It felt very crowded in my rib area last night, to the point I was uncomfortable and my back hurt. This morning, that has eased but I can't be sure. How would I know?

I'm about to get up again, change out the laundry, strip my bed, clean, sweep and mop the bathrooms, and vacuum the rugs and clean the other floors/ and run a mop over them. I should be totally wiped out by then and I still have to do the bank statement and pay bills. Then I have to start on the yard.

No, I don't have anyone to help me. This is the real world of widowhood when you're sick. Waaaaa.

Why am I here? Oh, yeah, right.

I just launched a new blog. Right, another one. This makes nine on my list but to be perfectly honest, over half of those are closed blogs used to store unfinished novels from NaNo. One is my final research paper that I had to complete to graduate with a BA in history. Another is a storage blog of my old Multiply site. So, this new one..

Rendered Praise Visit.


Tuesday, April 9, 2013

Catching Up, Checking Out

I did not get into bed until after midnight.The family issues continued until then. I'm so tired today and depressed. I was afraid I couldn't sleep so I just prayed for God to give me a blanket of peace and let me rest. And while, I'm very tired, I'm not collapsing. Not yet, anyway.

As happens when you go to bed your mind often does things it shouldn't. I had to get up and write it all down because I knew I'd forget it by morning. I'm glad I did that. It is going to be a good post I think. I'm working on the title. It is about how we change the will of God. Can't go into it now because I'd get started and mess up my post.

Today we are having our insurance meeting and we're supposed to get stuff ready for shredding... he really expects us to move those boxes? I don't think so. Then we're to do any filing we have. The meeting is at 2 p.m. It will probably last until at least 3 p.m. It will take a bit to get the boxes marked. What filing does he think we can get done in the remaining time?

Today is very warm, in fact,  78 at the moment. I had lunch with my NaNo Writer's Asylum pal, Kathy. I think I complained more than she but it was really nice to see her again. Of course an hour isn't enough to really get much said. I hope I didn't commandeer the conversation too much. If you read this Kathy, you looked great and I did enjoy getting together.

I've got to get ready for the next local writer's meeting. My friend, Snowgoon (aka Doug) is going to talk to the group about the Character Arc worksheet. I shared it with them several weeks ago and several folks felt they needed something like that to help structure their story. I ask him about speaker's fees but he didn't give me a price. LOL, I'm trading on friendship. Maybe he'll take a lunch in exchange.

For some reason my head is swimmy. I move it and I feel slightly dizzy. I think it is the allergies but at this point, I'm taking all kinds of stuff and nothing is working.

Later that day......

Well, I managed to get through the day without getting fired. They announced who was leaving today. One of my coworkers took one of the jobs in another department. The second person is still waiting to see if they get the second job available. As of May 1 we're down to 4 case managers and will be handling between 425 -450 files. This is astronomical. This on top of all our own filing and answering the phones and other support duties. Not support staff. They talked like within a year another cut could happen. If that happens the department is gone. We can't process on this small a staff. My guess is that they know we're going down. I believe in a year, maybe two, it will be outsourced. Time to go.

I'm looking for a telecommute job, folks.


Blood work came back. I have to go see the doctor next Thursday for the full results. My doctor likes to explain all the blood work to you. She's really a super doctor. I apparently have Epstien Barr Virus. Mono. They told me I had a "flare up" of the virus. I said, "Flare up? I've never been sick like this before. And I've never had mono. How can I have a flare up?" Look it up. You can have it and never get sick. You can pass it and not know it. Once you have the virus you have it forever and it can "flare" and you are contagious without even getting sick. How is that fair? That's true germ warfare!

There is something else but she didn't talk about it on the phone. Something to do with my RA blood work. I wonder if it is that discrepancy she noted on the last test? One being positive while the other was negative.

I'm sitting on the patio with a breeze blowing beneath the red umbrella. It is 77 out here and the clouds are increasing. I hear a storm is coming.

I'm going to bed tonight, early. I'm not available for the rest of the evening. Sometimes you really need to just check out.



Saturday, March 30, 2013

Short Post for a Long Day

The end of another day of bone weary exhaustion. I thought, around 7 p.m. last night that today I might feel better. I had about three hours where I suddenly felt really good. I did some laundry and then watched a movie with Dave and Sarah. I went to bed and today, I managed to go out for about three hours with Sarah. By the time I got home, I was as tired as if I'd run a marathon. I simply sat down the rest of the day and watched movies with David.

At the moment, it is raining here. Tomorrow is Easter and I'd like to be able to go to church and not feel as if I need to lie down on the pew.

I'm making this short. Thank you all for comments, notes, and emails. Prayers are much appreciated also.