Dear People Outside of My House,
I am sorry I have Checked Out of "being" for awhile. Like those memes about not being able to human, I just can't BE. No need to include anything after BE. I can't be fun. I can't be social. I can't be energetic. Getting up and doing even the littlest activity is beyond my capabilities right now. And so, I just can't BE.
BEing a MOM. Sigh. It's hard. I'm trying, but good golly. There are nights I just want to shout "I DON'T CARE." Seriously, 800 pages of school work a day times two kiddos, reminders about parties and field trips and spelling tests and the worry that my child is being bullied or other such issues which I make up in my mind because I enjoy worrying and fretting over stuff that hasn't happened, sigh. Don't they know I'm having a hard time just BEing and the avalanche of papers each evening isn't helping me???
Yes. I am overwhelmed. Finances. Insurances. Bills. Tuitions.
I just can't BE.
So, if you don't hear from me for awhile, it's not that I don't love you or care about you. I do. I do care about you and love everything you do for me, but I.just.can't.BE right now.
Please understand and continue to BE (there for me) for when I'm ready again. If it is too much for you, I will understand. Not BEing someone who can be counted on the BE there for others isn't really that great of a trait.
Thank you,
someone who just cannot BE.
Monday, December 28, 2015
Monday, December 21, 2015
If you would only explain things better . . .
You may have read, from prior posts, that there are a few persons in my life (not really my choice, believe me) that seem to have an issue with exactly how I've dealt with the MonSter to this point.
These same persons seem to resent that I'm not bedridden and miserable. They see to believe that, with the MS diagnosis comes abject misery. I was actually shocked with how offended some persons were that I wasn't one step out of an assisted living facility due to having MS! I don't know if they're just very uneducated in regard to the MonSter and unwilling to conduct even a smidge of research or if this was a great way to weed out the fake "friends" who didn't need to be a part of my life.
Yes, the following comments have all be said to me . . .
"If you would only explain things better, I could understand your illness . . ."
Well, you see, MS is this weird little problem that doesn't make me get progressively worse (I guess here, I should state that I have RRMS, so it's not one that makes me decline with each incident I have). Not only does MS not treat everyone the same . . . the little MonSter also says 'Howdy' in different ways to THE SAME PERSON!
I would LOVE for MS to follow rules. Seriously. "You will get tingly hands and feet. You will then get dizzy spells and have headaches. You will have fatigue every Monday after pushing yourself to be "normal" on weekends You will then start to have trouble walking . . . "
But NOOOOOO! MS, that silly little trickster, comes and goes. I never know what to expect. So, if I don't know what to expect how can I share with you?
To add to that above comment, maybe you could read a little bit first instead of posting multiple pics of you and your "besties" out drinking. I know education wasn't a priority for you, but I still think you were taught how to read. I know, from the excessive amount of time you spend on Facebook, that you know how to play on the internet and should be able to Google "What is MS?". Heck, I've shared multiple links about MS on my page. My friends have all read the articles and we've had discussions. None of those friends have said I should be sick all of the time . . . Should I have put pictures of alcohol and various mixed drinks above the article to make you read them?
"You've really hurt us by not posting about how miserable you're feeling . . ."
Umm . . . . I really don't feel the need to give the MonSter more attention than it deserves. 1. I don't have the energy. 2 I've always been a pretty private person. 3. I know you enjoy whining, but I don't. I enjoy finding the positives in everything when I can. 4. I'm sorry that misery loves company, but you'll have to look elsewhere, because (though MS can get me down) I'm not miserable. 5. If you really want to know how I'm doing FOR REAL, call me. Maybe I really am having a bad day but don't want to bring others in my life down. My friends reach out to me with phone calls, emails, texts and cards. They know how I'm doing and their attention has been a great comfort when I am having a bad day.
These same persons seem to resent that I'm not bedridden and miserable. They see to believe that, with the MS diagnosis comes abject misery. I was actually shocked with how offended some persons were that I wasn't one step out of an assisted living facility due to having MS! I don't know if they're just very uneducated in regard to the MonSter and unwilling to conduct even a smidge of research or if this was a great way to weed out the fake "friends" who didn't need to be a part of my life.
Yes, the following comments have all be said to me . . .
"If you would only explain things better, I could understand your illness . . ."
I'm sorry. I don't necessarily understand my illness either. This illness doesn't follow rules. Just know I can be tired and not want to deal with anything, or I could appear totally normal. Go to the MS Society website and do some research on your own. I am not going to spoon feed an adult who should take the initiative to do something on their own.
"I just don't understand . . . you're fine one day and then act tired the next . . . if you were really sick, you would be sick all of the time . . . ."
Well, you see, MS is this weird little problem that doesn't make me get progressively worse (I guess here, I should state that I have RRMS, so it's not one that makes me decline with each incident I have). Not only does MS not treat everyone the same . . . the little MonSter also says 'Howdy' in different ways to THE SAME PERSON!
I would LOVE for MS to follow rules. Seriously. "You will get tingly hands and feet. You will then get dizzy spells and have headaches. You will have fatigue every Monday after pushing yourself to be "normal" on weekends You will then start to have trouble walking . . . "
But NOOOOOO! MS, that silly little trickster, comes and goes. I never know what to expect. So, if I don't know what to expect how can I share with you?
To add to that above comment, maybe you could read a little bit first instead of posting multiple pics of you and your "besties" out drinking. I know education wasn't a priority for you, but I still think you were taught how to read. I know, from the excessive amount of time you spend on Facebook, that you know how to play on the internet and should be able to Google "What is MS?". Heck, I've shared multiple links about MS on my page. My friends have all read the articles and we've had discussions. None of those friends have said I should be sick all of the time . . . Should I have put pictures of alcohol and various mixed drinks above the article to make you read them?
"You've really hurt us by not posting about how miserable you're feeling . . ."
"By not telling us how really sick you are you're actually lying to us all . . . ."
So, you see, I am one of the very fortunate persons who has been diagnosed with MS. My getting an MRI was a fluke since we thought I just had an eye infection from a scratch. From that happening to the spinal tap and MS diagnosis all in 2 months, it's unheard of! I've never had an ER visit, I have never had emergency calls to my neuro. I may walk a little slower and have battles with fatigue, but again, I am so, so very lucky and in no way "really sick".
Monday, December 14, 2015
Working Out
When it comes to working out, I've gotta deal with THREE Monsters! Wait - Make it FIVE, I forgot two!
There are the dogs - these guys want nothing to do with me . . . . until I decide it's time for my sit-ups, yoga, barre work or squats. Then, they're right there . . . . Not normally lap dogs, both dogs feel the time I decide to get in the hated sit-ups is the PERFECT time to crawl in my lap! I love the doggies, but I cannot give in to their kisses and cuddles! I.MUST.RESIST!
Then, there are the two two-legged Monsters. B and Z have both decided they want to work out with me. This is great as I want them to be healthy. In the spring and summer, it works out as we have a "5K" walk we do. The route from our home, to our neighbor's mailbox and back to our home is an exact 5K. The girls will carry bags and "grippers" and pick up aluminum cans to recycle in an effort to help out with their schools' tuitions.
At the same time, their wanting to work out with me is rent with trouble when we're doing the in house exercises. B is in that competitive stage of life right now. Our current goal is 35 sit-ups. B is adamant that she can get these setups done WAY faster than her sister, Z. So, she starts flailing around, not having good form or really benefitting from the "sit-ups" she has done.
Z then gets frustrated because she is 2 years younger and not nearly as physically "able" to do 35 sit-ups in anywhere near the short time that her sister flailed her body to her 35 sit-ups. When this happens, she'll start crying and usually not stop until I'm at about sit up number 30. Then, she'll start begging for me to start over and do my 35 sit ups with her.
Finally, there is the MonSter itself that I must consider. Fatigue, dizziness, headaches and tingling aren't necessarily a fulltime team, but every so often, they work to ensure I don't get in my desired workout. When that happens, I do have bouts of depression and still resent that I am not normal. I still get frustrated and call myself lazy and worthless, even knowing it's not ME it's the MonSter that has me laying on the couch unable to move.
With all 5 of the obstacles that keep me from going all out on my workouts, I was surprised tonight at how much I have improved since the girls and I started our nightly routing!
At present we do the following:
35 sit ups
40 seconds plank
15 pliés first position
15 pliés second position
60 second squat
There are the dogs - these guys want nothing to do with me . . . . until I decide it's time for my sit-ups, yoga, barre work or squats. Then, they're right there . . . . Not normally lap dogs, both dogs feel the time I decide to get in the hated sit-ups is the PERFECT time to crawl in my lap! I love the doggies, but I cannot give in to their kisses and cuddles! I.MUST.RESIST!
Then, there are the two two-legged Monsters. B and Z have both decided they want to work out with me. This is great as I want them to be healthy. In the spring and summer, it works out as we have a "5K" walk we do. The route from our home, to our neighbor's mailbox and back to our home is an exact 5K. The girls will carry bags and "grippers" and pick up aluminum cans to recycle in an effort to help out with their schools' tuitions.
At the same time, their wanting to work out with me is rent with trouble when we're doing the in house exercises. B is in that competitive stage of life right now. Our current goal is 35 sit-ups. B is adamant that she can get these setups done WAY faster than her sister, Z. So, she starts flailing around, not having good form or really benefitting from the "sit-ups" she has done.
Z then gets frustrated because she is 2 years younger and not nearly as physically "able" to do 35 sit-ups in anywhere near the short time that her sister flailed her body to her 35 sit-ups. When this happens, she'll start crying and usually not stop until I'm at about sit up number 30. Then, she'll start begging for me to start over and do my 35 sit ups with her.
Finally, there is the MonSter itself that I must consider. Fatigue, dizziness, headaches and tingling aren't necessarily a fulltime team, but every so often, they work to ensure I don't get in my desired workout. When that happens, I do have bouts of depression and still resent that I am not normal. I still get frustrated and call myself lazy and worthless, even knowing it's not ME it's the MonSter that has me laying on the couch unable to move.
With all 5 of the obstacles that keep me from going all out on my workouts, I was surprised tonight at how much I have improved since the girls and I started our nightly routing!
At present we do the following:
35 sit ups
40 seconds plank
15 pliés first position
15 pliés second position
60 second squat
Monday, December 7, 2015
Squish Squash!
You ever listen to some of those "side effects" of advertised medicines? Some appear so much worse than what the medicine is for! I especially like the ones that advertise the side effect of death. To me, a side effect is something that can be stopped by no longer taking a medicine . . . death (to me) seems a smidge worse than a side effect.
I am currently taking a medication to help battle my MS. The official side effects include:
* redness, minor pain, swelling, irritation, or a hard lump where the injection was given
* warmth, redness, or tingly feeling under the skin
* weakness, dizziness
* white patches or sores inside your mouth or on your lips
* joint pain
* nausea, diarrhea
* muscle tension or stiffness
* runny nose
* changes in your menstrual periods; or
* increased urge to urinate.
Weighing these against some of what MS could do to me, and wanting to prolong my "normalcy" for my girls had me signing up to put chemicals in my body. I didn't care about the success rates and how medicine a had been on the market for this length and had such and such percentage of relapse. I mainly wanted a medicine that didn't list "death" as a side effect. So I chose the meds I chose - and I also chose it because it didn't seem to have negative results with my Hashimotos disease (oh, I didn't tell you I also had that? I do. It's a pain. Period).
Then, I had my first yearly appointment around a year after having been on the MS meds. Long story short, I had to have a biopsy done and a few rounds of acid treatments in a very tender and private area. Fortunately, the cells were not cancerous, but I was told that MS meds raise the chances of cancer. WOOT! HOW EXCITING! Trade MS flares and progressive physical declines for chemo? SIGN ME UP!
Sarcasm aside, I was a little upset to have not heard this before. Doing research online also gives mixed results. About half of the articles state my form of medication actually decreases rates of cancer whereas the other half state it increases e chance of cancer.
So, I just shrugged and said "hey, it's life" and moved on.
Then, this late summer and early fall, I started having "soreness" on the outside of my left breast. It wasn't all of the time. I put it down to PMS, working out, moving the wrong way, etc. Then, it would go away and I would forget about it.
Then it would come back.
And go away.
Then, October arrived with its Pink Out. The girls got to wear cute pink bows for cheerleading, and carried cute pink pom poms. And the news had tons of breast cancer stories, including a story on a very rare but dangerous form of breast cancer that can't be detected by normal means.
This article was aired during one of the evenings where the "ache" was making itself known big time. But . . . . I really didn't think more of it. I mean, we'd been doing our plank challenges each night, so who was to say it was breast cancer instead of just bad form while planking?
Then, I woke up in November and the ache was THERE. It was not something I could forget . . . it made itself known from the time I woke up to the time I went to bed.
My 91 year old gram was scheduled to have a mammogram, so I decided I needed to try to get in for one, just in case.
My self exams weren't finding anything other than WOW! TENDER! So, I was eager to get in to the doctor so he could tell me it was all in my head . . . . or that I had mastitis or some other sort of infection.
But, no. We needed to get me in for a diagnostic mammogram and ultrasound.
I only had to wait a week for that fun - a week without my normal cup of tea each morning. A week without my daily chocolate fix. And (it turns out) a week of full on PMS. it's a wonder my family and my co-workers survived.
The mammogram was NOT painful. Not in the least. It might've been the two extra strength pain pills I had within an hour of the exam . . . . or maybe it was the fact I am so overweight that there was a lot of fat to squish? Whatever the reason, the mammogram was almost anti-climatic in the painlessness of it.
The mammogram was reviewed while I sat in my hospital gown knitting scarf (you can get a full scarf down between all of these fun tests - fyi). The results determined I had dense breast tissue, but because it was my first mammogram, they decided to continue with the ultrasound and check out the lumps on the outside of my left breast.
The ultrasound hurt worse . . . but it was only b/c of the continued tenderness of the breast and not the exam itself.
I got to take a short nap while that ultrasound was studied.
The results - I have dense breast tissue. But - because this was my first ultrasound and I have that denseness, I have to go back in 6 months to ensure nothing is growing or getting all bad in there.
I still don't know if the MS meds have a hand in these new problems, but the fear is in the back of my head as I make lifestyle decisions, including types of foods I consume. They might not be related, but I really think it's a good idea to do everything I can to stack the chances in my favor . .. .
I am currently taking a medication to help battle my MS. The official side effects include:
* redness, minor pain, swelling, irritation, or a hard lump where the injection was given
* warmth, redness, or tingly feeling under the skin
* weakness, dizziness
* white patches or sores inside your mouth or on your lips
* joint pain
* nausea, diarrhea
* muscle tension or stiffness
* runny nose
* changes in your menstrual periods; or
* increased urge to urinate.
Weighing these against some of what MS could do to me, and wanting to prolong my "normalcy" for my girls had me signing up to put chemicals in my body. I didn't care about the success rates and how medicine a had been on the market for this length and had such and such percentage of relapse. I mainly wanted a medicine that didn't list "death" as a side effect. So I chose the meds I chose - and I also chose it because it didn't seem to have negative results with my Hashimotos disease (oh, I didn't tell you I also had that? I do. It's a pain. Period).
Then, I had my first yearly appointment around a year after having been on the MS meds. Long story short, I had to have a biopsy done and a few rounds of acid treatments in a very tender and private area. Fortunately, the cells were not cancerous, but I was told that MS meds raise the chances of cancer. WOOT! HOW EXCITING! Trade MS flares and progressive physical declines for chemo? SIGN ME UP!
Sarcasm aside, I was a little upset to have not heard this before. Doing research online also gives mixed results. About half of the articles state my form of medication actually decreases rates of cancer whereas the other half state it increases e chance of cancer.
So, I just shrugged and said "hey, it's life" and moved on.
Then, this late summer and early fall, I started having "soreness" on the outside of my left breast. It wasn't all of the time. I put it down to PMS, working out, moving the wrong way, etc. Then, it would go away and I would forget about it.
Then it would come back.
And go away.
Then, October arrived with its Pink Out. The girls got to wear cute pink bows for cheerleading, and carried cute pink pom poms. And the news had tons of breast cancer stories, including a story on a very rare but dangerous form of breast cancer that can't be detected by normal means.
This article was aired during one of the evenings where the "ache" was making itself known big time. But . . . . I really didn't think more of it. I mean, we'd been doing our plank challenges each night, so who was to say it was breast cancer instead of just bad form while planking?
Then, I woke up in November and the ache was THERE. It was not something I could forget . . . it made itself known from the time I woke up to the time I went to bed.
My 91 year old gram was scheduled to have a mammogram, so I decided I needed to try to get in for one, just in case.
My self exams weren't finding anything other than WOW! TENDER! So, I was eager to get in to the doctor so he could tell me it was all in my head . . . . or that I had mastitis or some other sort of infection.
But, no. We needed to get me in for a diagnostic mammogram and ultrasound.
I only had to wait a week for that fun - a week without my normal cup of tea each morning. A week without my daily chocolate fix. And (it turns out) a week of full on PMS. it's a wonder my family and my co-workers survived.
The mammogram was NOT painful. Not in the least. It might've been the two extra strength pain pills I had within an hour of the exam . . . . or maybe it was the fact I am so overweight that there was a lot of fat to squish? Whatever the reason, the mammogram was almost anti-climatic in the painlessness of it.
The mammogram was reviewed while I sat in my hospital gown knitting scarf (you can get a full scarf down between all of these fun tests - fyi). The results determined I had dense breast tissue, but because it was my first mammogram, they decided to continue with the ultrasound and check out the lumps on the outside of my left breast.
The ultrasound hurt worse . . . but it was only b/c of the continued tenderness of the breast and not the exam itself.
I got to take a short nap while that ultrasound was studied.
The results - I have dense breast tissue. But - because this was my first ultrasound and I have that denseness, I have to go back in 6 months to ensure nothing is growing or getting all bad in there.
I still don't know if the MS meds have a hand in these new problems, but the fear is in the back of my head as I make lifestyle decisions, including types of foods I consume. They might not be related, but I really think it's a good idea to do everything I can to stack the chances in my favor . .. .
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