Just a bad reaction

Dozed off and on during the night. Pain kept me from sleeping for long. That's tough with horrible exhaustion... I feel like a zombie, slow brain, body too tired to behave. Going down the hall to the bathroom is a real effort.

Still awaiting test results. Afraid that it won't be good news and that I will end up in the hospital again. Have to be optimistic, that's the only option.

Still, I'm not feeling well enough to do much. Trips to the bathroom and putting out fresh linens has been all I can handle at the moment. Taking a bath is my next priority. As soon as I rest up more, I will give it a try.

The upside is that it is not the weekend.

Later.... No infection. Just a bad reaction to the drug. Thank goodness.

Bad reaction to methotrexate

Awaiting results from a CBC and urinalysis. Severe Abdominal pain hit before I left for the doctor's office. Running a fever. Fell asleep in the waiting room and on the examination table.

Gotta love a bad reaction to a drug I was pressured to take in the first place. I had excellent reasons and still do for not taking it. No, my objections were not enough to sway "those who knew best". I caved in and took it to get people off my back. Now what?

I really have no one to blame. Just me. In order to keep the peace I did take the methotrexate. It was the wrong drug for me. I knew it as soon as I began researching it. I know how my body reacts to almost every drug. Badly, very badly. Completely my fault for not standing my ground. 

Now I have to live with the consequences of that decision. Once the test results are in, I will know just how bad it is. In the meantime there is pain, fever, total and complete exhaustion, and let us not forget the hair loss.

Enough for now, I'm totally and completely wiped out.....

Tired

Sunday...

Somewhat better today. Less exhaustion, being extremely cautious and resting before and after everything.

Managed to water the dying plants that have yet to be planted. They were purchased a week ago and are sitting in the garden, still in their store pots. I feel bad that they sit there wilting.

Another handful of hair came out today. It bugs me so much to lose hair, it's part of who I am. The person that I expect to see in the 12x mirror has a gorgeous head of shiny, straight hair. 

It took until I was 48 to find someone who made magic with her scissors. Prior to that, I had wild, red, wavy hair all of the way down my back. Pammy got rid of the grays, cut my hair perfectly, straightened my hair. I look nothing like I did before. She changed my makeup and the way that I look at myself. She also changed the way that I thought about myself. I owe that amazing woman more than words can express.

Darling Husband took me out to breakfast this morning. We relaxed and talked, sitting in a comfortable booth. The coffee was wonderful. I had dry toast and bacon, ate a portion of it, and enjoyed the time together.

I have a plain USB medic alert bracelet, boring, and not my style at all. After some thought, I raided my jewelry and grabbed a sewing box and my lighted stand magnifier. A couple of hours later I had a really great bracelet. A vintage beaded necklace, some lovely ribbon and an antique shoe clip became a classy fashion statement.

My occupational therapy ladies came over the other day for the first appointment. They asked dozens of questions about what I can do and what I need help with to cope with vision loss increasing. They'll tailor their future visits to assist me with daily living skills that will make my life better. 

Cooking is one of the main items that will be worked on. With burners on the front of the stove, I can cook better.  Convenience foods may become a thing of the past. I miss cooking from scratch and doing all of my own baking. Most cooking is done with the Oven, crockpot, electric skillet, etc. It is not how I enjoy cooking, but, it works for now.

They had a lot of different magnifying glasses and gadgets for me to try out. They left a Video magnifier for me to try out and a neat catalog from MaxiAids which shows many items available to make living better.

Tuesday....

After a couple of days of some improvement, I once again hit a wall last night. Crashed hard and slept for 13 hours. Not much better this morning. I managed to dress and throw a load of towels in the washer. That used up my reserves.

Had to cancel my white cane training today. That makes the second week in a row that I had to do it. 

Seeing my Primary Physician this afternoon. The side effects are too much to handle. I can't live like this. It is no life. Not for me, not for anyone.

Side effects continued

Friday begins with 10 hours of sleep followed by more exhaustion. The snooze button on the alarm for my morning pills has been hit many times. I'm too tired to take them, maybe hitting the button a few more times will do the trick.

The hardcore exhaustion has hit again, not quite as bad as last week, but pretty hard. There is so much to do. I'm trying to accept that not everything can or will be done on my timetable, or even at all, but it's truly aggravating.

So, I was talking to my shrink yesterday, and then later to Darling Husband, and the big question keeps coming up. What about my quality of life on this medication? Finally, they are the ones asking. Now they are getting it. 

Where exactly is my quality of life? Parked on the sofa? Watching my hair fall out? Too tired to shampoo and shave at the same time in the tub, it's one or the other, not both.

One thing I do not talk about is loss of libido. 

But...

 I was on cymbalta for months, getting the dose tweaked periodically because libido kept going down until it was gone. Finally had to go off of it because of that. That is something no one should ever be without for any reason. Then, a couple of weeks later I began the methotrexate. Well, guess freakin' what? It  lowers libido too.

I have no libido, none. I read books that are rather steamy. Nothing. I'm criticizing grammar and writing styles. Pathetic.

It's drug induced, I know that, and I am furious about it.

Why not tell patients about this before prescribing these medications? Doesn't anyone think that people should be informed about these things and have the opportunity to decide for themselves if it's something that they are alright with? 

That's another quality of life item. Whether you are an everyday, twice weekly or even monthly type of person, it's a huge thing. It Matters! When it's you, no matter how, or how often, It Matters.

Methotrexate causes depression in a lot of folks. 

Well, let me tell you why. You're stuck on the sofa, too exhausted for anything. Your hair is falling out. There is no enjoyment of anything remotely physical. If you add in the lowered immune system which keeps you from taking part in life and staying covered up anytime the sun is above the horizon, is it any wonder you get depressed? Now, try taking care of a home, and children, And working. Many on these drugs do some or all of those things. What woman wants to watch her home go to hell because she's too exhausted to take care of it?

This is so the disease may slow down. So I can watch the blurs from the blurry sofa. So my 12x mirror can show my scalp more and more daily. 

Where exactly is my quality of life? I will tell you where it is not. Here.....

And I'm supposed to be on it for 6 months?!!!

Time to ReVisit this one......

And life continues

And life continues....

Moving slowly and wearing out quickly is becoming commonplace. Monday gave a bit more energy, Tuesday even more so. Not much more, but enough to do laundry and straighten the house, tasks formerly done in under a couple of hours as opposed to a couple of days.

Vacuuming and mopping are above my ability levels at this moment. Thankfully, the pets are determined to do their parts in keeping the floors clean. Unfortunately, the dog wants to help out by cleaning the litter box. I give her kudos for attitude.

Yesterday was dose number 4 of the methotrexate. More hair lost and I'm profoundly unhappy about that. Hats and scarves in the Oklahoma summer, it will be like a continuous hotflash.

8 pounds lost since beginning the drug, and that is the one plus. Tried on jeans from the "too small" box. 4 pairs fit perfectly, 6 more are within 5 pounds of a perfect fit. I made a mental note to try them on in a couple of weeks.

Got a few plants into the ground over the last few days, several days worth still to go. Just have to remember to keep watering them until then. Had to bring in one fuschia, it decided that the great outdoors was not to it's liking. The other one is growing like crazy outside.

I keep picking up the phone to call mom, still buying handfuls of magazines to send to her. Doesn't seem like she should be gone. Eventually, I'll get used to it.

Yesterday would have been my daughter's 28th  birthday. It's the toughest day of the year for me. I'm grateful it only comes once every 365 days.

Too much loss in the past year and a half. Not enough time to mourn for one person and the next one passes. 

So, I keep going on. Each day brings it's own joys  and wonders as well as problems and sorrows. I try to focus on what IS, instead of what if. If I need to cry, I go ahead and do it, getting it out of my system instead of letting it fester. Bottling up feelings and sorrow doesn't work for me. Now, I don't do it in public, that's just not how I am. It's not fair to others.....

Methotrexate Sucks Rocks!

Methotrexate sucks rocks! I lost a handful of hair yesterday, not including what went down the tub drain. Bald is NOT part of my life plan. It doesn't run in the family. The shiny dome is not my style at all. 

I've already told my hairdresser that I will not do the nursing home blue/purple poodle perm. Its sinful to do that to women who are a captive audience. Not short either, it's shoulder length or longer, straight with bangs at my brows. That's the hair I have, that's the way I like it.

Wigs? Maybe, if I can stand summer temperatures in Oklahoma with one on my head.

So, I had been planning to use scarves as protection for my lowered immune system. Now they will do double duty for the lack of hair......

Side effects again. Maybe the fatigue will keep some of my hair attached to my head. Too tired to comb  or brush it. Nope, just found more on the sofa pillow.......

I keep looking for the bright side of taking this medication. Other than weight loss, I cannot find much to cheer about. It's funny that I'm not more excited about losing weight. I work so hard to battle the pounds that the various medications have put on me. Strict diet and exercise being an absolute like bathing and tooth rushing still did not keep up with the medications.

This drug had better freakin' work some huge miracles with my sight to make it worth wasting my life on the sofa, losing this gorgeous head of hair AND taking down my immune system. Every one of those things throw huge curves into my life.

I have places I want to go, things to do. Being a shut in is not part of the life I will live. Side effects have ruled my life for over two years now and I'm tired of it. I want my life back!

Side effects

Too exhausted to write much lately. The methotrexate has a bad side effect of causing horrible fatigue. Third weekly dose was on Wednesday, by Friday afternoon I was done. Thankfully, I grocery shopped on Thursday. The sofa is my new best friend, I cannot travel far from it. Resting up to go to the bathroom, and having to rest afterward is ridiculous.

Slowing down this disease sounds great. Maybe I can see the view from the sofa longer. Sarcasm intended...

I've lost seven pounds in the past three weeks. That's the great part of this medication. No appetite whatsoever. Forcing myself to eat is horrible. Nothing tastes good anymore, I miss flavors. Worth it to get back in my skinny clothes? Perhaps. I look forward to having that body back. Getting rid of the round face and weight that the steroids put on me will be a relief.

More later, I just used up my reserves typing.

Seeing Stars

My Husband made me see stars last weekend. He does it a lot, part of the magic which makes up our relationship, and one of the many reasons that I absolutely love and adore him.

Actually, he made it possible for me to see stars. He gifted me with a wonderful pair of light gathering binoculars and we went to The Black Mesa. It has, I've been told, the darkest night sky in America. 

No, I couldn't see many, none were clear. They were there, right in front of me, and I saw some of them!

It has been almost 3 years since the last time I saw any. It's one of the things about this disease which bothers me the most. Stargazing is something which I truly adore and have done all of my life. Relaxing on a blanket with a cool beverage on a clear night was something that made a busy life worthwhile.

Seeing stars was a gift. I had thought that I would never see them again. This was one of the very best gifts I have ever received. 

Thank you Darling, I love you.

Reunion and Reorganizing

I have a class reunion this summer. Folks got a wild hair and decided to throw a 34th year one. Any excuse for a party, pretty much like it was back then. I'd love to go, I've stayed in touch with a lot of friends from back home, and Facebook has made it easier to keep up with others. We are scattered all over the world and yet still part of each other's lives. They're a great bunch of folks. I liked them then, and still do. Some I've known since babyhood, quite a few I cannot remember not knowing. We all are part of what makes us the people that we are now. I am me, in part, because of these people. They are in my very earliest memories, that's a long time to have friends in your life.

Working on the wardrobe organizing. Cried for a few minutes when I realized that muted reds, oranges and browns are pretty much merged in my sight. Thankfully, I have an app which tells me what color things are when I point the camera at it. I have one section of complete outfits, and I'll add info as to which purses, hats and shoes go with each combo. Another section features separates which all coordinate. I'll label each piece as to the accessories which will work best with it. Once I finish labeling them, I will wear every combination. A photo of every single combo can have my special tags and labels attached, making it easy to shop in the future, showing the styles and colors which work with my body and coloring. 

It seems there are a lot of things to do while there still is a little sight. Projects, and as I work on each, it leads me to more. None hard, each necessary, a few vital to my piece of mind.

Labeling and copying photos on the computer, burning copies for my sons. Otherwise, they're picking up a photo, tossing it because no one has a clue as to whom they're seeing.  If they really don't care about them, that's one thing. My sons like their family, having those pictures for their children and grandchildren will be a thing that they'd want. Part of their histories, 10 generations of relatives. That's a neat legacy to pass on to them.

Another thing is going through the computer, organizing and backing things up, deleting ancient crap on it. It was new in '06, has a minuscule (30 gig) hard drive. Only one game on it. I deleted and gave away the other games once I could no longer see to play them. Using multiple magnifying glasses to read the screen will make the going slow.

What I need to do is transfer everything to the laptop and retire the old computer. The laptop can be hooked up to the big TV and viewed that way. Much easier than wearing magnifying glasses AND looking through a large lighted magnifier to see the screen on the old one. Talk about a quick headache maker. I'm good for about 5 minutes at most before my head screams from trying to make out any details. Then, I can't get near it for anywhere from hours to days. 

Enough for now. 

Catching up

I'm playing catchup on some posts. Between storms and medication, I've got some stuck in the notepad.

Enough with the tornados, threat of tornados and talk of tornados. EF5's, and world record tornados and wind speeds is mind boggling. Way  too much for everyone in the past couple of weeks. Flooding, massive amounts of rain, and straight line winds just add insult to injury. We Okies are resilient, but we sure could use a break of some good weather for awhile.

We stayed safe, went to a shelter last Friday evening during one storm. During the latest round we kept power but lost HD and Internet for a few days. Thankfully, I have a wifi hotspot to get us through. 

With all of the storms, I've stayed at home except for doctor's appointments lately. So, there are plenty of things to keep me busy. The latest round of side effects don't leave me much awake time right now. Using my time very wisely and being extremely careful to pace myself is something I'm living with. You'd think that I'd be used to side effects by now, but no, they just keep coming...... Sleepy, Blurry, Fuzzy, Pukey, Dopie, Dizzy, Wobbly, Weepy, Grumpy, Bitchy (nastier than Grumpy, much nastier), Achy and Itchy. Too many, way too many.

Looking forward to nice weather. Some sunny skies, lovely breezes and calm. You know, the best of spring and early summer. Days to enjoy grilling, sitting on the patio and chatting during a colorful sunset. Being able to dig in the dirt, instead of wading through mud. I do love this time of year, everything is so fresh and sweet.

Let the side effects begin (again)

A week on methotrexate, the second dose will be taken tomorrow.  4 Days of sleeping up to 18 hours, being sore from sleeping in one position too long. No appetite, and an upset stomach. I'm forcing myself to eat. I've lost 4 pounds this week. Hard to get up to 1000 calories. Living on fruit, low sodium peanut butter, either a BLT or part of a club sandwich daily. Retaining fluids, so I'm continuously sipping water and coffee to try to stay on top of that. Tonight I'm sipping water with a squirt of lemon juice, it helps some. Yesterday and today I felt pretty good but Really fuzzy/foggy/somewhat out of it. Remember the 70's? Nah, me either......

So, I actually see the lack of appetite as a wonderful thing. I've been on a weight loss plateau, battling various medications which cause weight gain for over 2 years, including one that packed on 30 pounds in just a few months. Tracking every bite which goes into my mouth, 900-1100 calories 5 days a week. The other 2 days I'd let myself have up to 2000 calories. Making myself exercise no matter how I felt to stay healthy and try not to pack on more pounds. Very discouraging, knowing without the medications I'd be sicker but I'd also weigh what I was supposed to.

Had another O&M (white cane) lesson today. Today I learned to walk on and cross streets, small neighborhood ones. It felt really nice to walk without being bent over to try and make out things like potholes and curbs. There are few sidewalks in the city, the area is just hilly enough to not be able to walk in yards. So, as sight declines more I'll be limited to taking walks in our little dozen house neighborhood. 50th Street is just too dangerous to cross, especially with it being a major thoroughfare and having a Parkway next to it.  So, it's catching a ride with friends and relatives, taking a cab, or riding the city bus that I have to book 2 weeks in advance. Why can't cities require sidewalks when neighborhoods are built? Seriously, OKC is built for automobile traffic. If you want to go walking, you have to drive to places to do it.

When I ride the Etrike I pretty much take my life into my hands. Either crossing 50th street or riding along it almost 2 blocks in order to get to quiet neighborhood streets. It makes me so nervous to just do that little bit. At this time I can still make out shapes, movement and some colors. I want to get out, to go places on my own. With the quiet streets I feel safe, and can get my exercise.

I'm not allowing this disease to make me into a shutin. I have too many plans for my life, and they do not include reducing my world to my house and yard.