I'm back, and well...
October 16, 2009 11:23pm
Ok, i think i have stalled out on my objective for the apartment (it's all down to not being able to "keep a lot of balls in the air" …
Rylee55
11:21pm, October 16, 2009
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About Me
Rylee55
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About Me
My life has been in transition for a while now, but I just moved into a new apartment, and I'm working on getting settled in. It's a slow process when you have MS. It's even worse when you have trouble with the concept of pacing yourself. Kind of like every day is the only day that ever existed, and I can't remember ever having crashed after an over-extended day ever before (Do I have to go back and read my journals every morning?) I have no sense of time, either. Have learned to keep a clock in every room. Am working on being more settled in my life. I have been recently diagnosed Asperger's, but I'm already retired on disability for MS after 25 yrs of work. I have a bachelors in fine arts which never managed to lead to much of a career, because life circumstances, and internal overload situations, often overwhelmed me to the point where I'd just cave in. Besides that, art school just stomped the spontaneity out of it for me. I'm working my way back to that. I have a son, and three granddaughters, who I don't get to see much, unfortunately. As far as my health, I have multiple Dx's: as well as MS I have osteoarthritis, asthma, migraine, cutaneous lupus with some indication of systemic manifestations (although that's less likely an issue as I get into menopausal stage), and now they're saying possible connective tissue disorder of unknown cause. I deal with a lot of other neurodivergence/psychological issues as well: anxiety, depression, OCD, Sensory Integration Disorder, Dx in early 2000 with ADHD. Because of all of issues in my life I spend a lot of time going on appointments. I always hated going to doctors offices, and because of that for years I ignored a lot of increasing medical issues, until they got too big to ignore. The psychological issues at least I did pay attention to: I went to therapy pretty much all through my adult life, just to help me cope, and try to figure out why I kept imploding. I have had trouble with depression too, off and on, because it just seems to get harder to get what I need to do done. I have to work at keeping a focus on the positive. Now I'm working to be a responsible and participating patient in regards to my physical health, too.
My life has been in transition for a while now, but I just moved into a new apartment, and I'm working on getting settled in. It's a slow process when you have MS. It's even worse when you have trouble with the concept of pacing yourself. Kind of like every day is the only day that ever existed, and I can't remember ever having crashed after an over-extended day ever before (Do I have to go back and read my journals every morning?) I have no sense of time, either. Have learned to keep a clock in
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Interests
I'm a student of quite a few things, with interests ranging from history & the sciences (& medicine, of course!) to spirituality & metaphysics. I'm a seamstress, still - although MS has just about ended my ability to sew by hand, so I mostly use a machine. I began early in my life to be an artist - painting, drawing & printmaking, & over the years moved gradually into singing, then dance & acting during school, and actually performing a few years ago, as well as becoming more and more interested in costume making. I do not dance anymore *sigh*, or act: these things are in the first case not possible (except at home holding onto a chair) and in the second, just take too much energy. (Unfortunately never made my living doing any of these things except the seamstress part) I still make costumes though: around town I've been known for going around dressed like someone from another era, or another world even =D Being someone else is a release, I can be a total nutter, or even really be myself, & no one sees who's behind the "mask"! Costume gives me the courage to be who I am and be out there in the world.
I'm a student of quite a few things, with interests ranging from history & the sciences (& medicine,
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thanks for the comment!
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Flowers for a cool helpful person. You have helped many in you time on this site and should be proud.
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Thank you for your support. It is hard to go through this and feel so alone.
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Support Groups
Close Multiple Sclerosis (MS)
: Relapsing-remitting MSI was Dx'd in Dec 2000. This past yr has been really difficult; I've been losing mobility at a noticeable rate, & having more pain than ever before. I asked my neuro if I have moved to SPMS, and he gave me a non-committal answer on how RRMS is a progressive disease, & it's difficult to say where I am on the continuum. My relationship of 2 yrs has ended, so I'm dealing with that transition still. I hang in there with help of Mother/Father Spirit, love of lots o' friends, my mom, & my kitty Anu.
Treatments
- Avonex Not Working
- Took for a yr - my 2nd DMD - then the reaction (all day migraines w/ nausea & vomiting) started to get to be too much to bear. Neuro had me switch to Tysabri.
- Baclofen Working / Worked
- Helps me with leg spasticity so I can walk better and elsewhere like in my neck which otherwise pulls over to one side like Igor yess massster eets truuue! and my arms so that I can do normal stuff still.
- Copaxone Somewhat Helpful
- Took that for a yr - it was my first DMD - and it was moderately helpful, but I developed cysts in my arms & legs, and never could use my belly, because of dense stretch marks.
- Cymbalta Working / Worked
- Started on 60 mg it worked ok for depression and anxiety. Neuro bumped it up to 120 to help me with disesthesia it has helped that and the dep/anx very well.
- Darvon Somewhat Helpful
- Helps with the pain that's left over that Neurontin doesnt quite catch sometimes in the evening especially.
- Imitrex Working / Worked
- Works great for Migraines.
- Lunesta Working / Worked
- Sometimes I have this overactive thinking thing when I go to bed and occasionally nothing else works so I take a Lunesta. It does work and doesnt leave me feeling dopey in the morning
- Meditation Working / Worked
- I meditate on my connection to the Creator/all of Creation, & this helps me to feel at peace with my place in the scheme of things and feel less anxiety as well.
- Neurontin Working / Worked
- Without this drug I might not have kept going. The pain was pretty bad and still can be at times but Neurontin helps a lot.
- Physical Therapy Somewhat Helpful
- I haven't been doing it because it's too hard to get there.
- Positive Thinking Working / Worked
- Yep it works, most of the the time.
- Provigil Working / Worked
- Very occasionally, 1/2 a tab, it amps up my BP if I take it too much. It helps, but seems to keep me going much longer than I want to.
- Support from Friends & Family Working / Worked
- Without my friends and a small part of my family Id be lost right now and probably just collapse...Some family members haven't been so supportive, seem to have decided that whatever's going on right now, I f***ed up when I was younger so I don't get any support now.
- Swimming Working / Worked
- It's great,
- Tysabri Too Soon to Tell
- I've had 12 doses. My MS seems like it might be stabilizing now - My last MRI showed no chnges sins the 1 6 mos before tht.
- Zanaflex Working / Worked
- I take that at night with my Baclofen so that I dont wake up at night pretzelized.
Close Migraine Headaches
I began having migraine headaches at a certain point during my perimenopause, which are estrogen related. Giving up soy products cut the frequency in half, but that was still horrible. Soy contains phyto-estrogens. Also can't eat a lot of chocolate (thankfully able to eat a little) or drink red wine. Can't eat a banana first thing in the AM. Avoiding soy is not as easy as I thought it would be. I'm sure looking forward to menopause!
Treatments
- Imitrex Working / Worked
- Really is a miracle drug, to me! Injection form gave me intolerable feelings of dizziness and heaviness. Nasal form is working fine now.
- Inderal Somewhat Helpful
- helps partly, I guess I'd say it's part of the equation.
- Tylenol Working / Worked
- Worked ok if I caught it early, especially combined with Tiger Balm. I stopped because I became concerned about indications that Tylenol could be problematic if combined with other medications which affect the liver.
Open Asthma
Type: Adult AsthmaAsthma runs in my family, and I had it as a child, then it cleared up mostly until I was 47, when it came back and kept getting worse. It started out as exercise related, but progressed.
Treatments
Open ADHD / ADD
I'm an adult woman with ADHD. I have a lot of autoimmune disorders as well, including MS. I wanted to be a writer, but I've never been able to focus. I try to remember always that I have some kind of purpose in life, just the same!
Treatments
Open Hypermobile Syndrome
Already have MS & other autoimmune disorders. Dx'd w/ poss. SCLE 01/08, after an increase in hypermobility, Rheumatologist says I have Hypermobility & possible Connective Tissue Disorder. No conclusive blood tests, everything is always "borderline". Good thing, I guess; like no news is good news, right?
Open Asperger Syndrome
I have only within the last year been clinically diagnosed with Asperger's, and I'm 53 yrs old. Mostly I feel relieved: I have found a to be a way to put the puzzle together, now. I want to do something to help others who have Asperger's, so I'm planning to start a support group in my area, with my therapist's blessing, and already I've been contacted by some people at a local Autistic center.
Open Tooth Grinding
I am diagnosed Asperger's and for me bruxism is a stim, but one which has cost me one tooth and crowns on two others, plus it aggravates gum recession. I have done it all my life, though, and I am 53.
Treatments
- Mouthguard Working / Worked
- I clench more when I put the mouthguard in, and then my jaw starts to hurt.
