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At long last, I am on Jigidi for only a brief time. Every day I think about going on to say hello, but every day I lack the energy or pain control to sit at the computer. After 13 years of my doctors chasing the wrong issue (large fiber neuropathy), I was finally diagnosed by my neurologist with small fiber neuropathy, which symptoms mimic in large part the symptoms of MS and has the weirdest symptoms (can’t regulate my body temperature, static electricity up and down my body, difficulty swallowing, etc.). Then, after almost a year of continual painful stabbing in my eyes and an inability to be outside in daylight (another reason to want to be back in Oregon where it rains a lot), the same neurologist diagnosed me with ocular migraines. The treatment is generic sumatriptan ($10/month), the brand name is Imitrex ($1,000/month). It’s been a miracle worker it's always in my possession. My neurologist is out of network (except for getting the diagnosis), so I'm paying him out of pocket. I'm scheduled to see him Wednesday because he recently became certified to prescribe medical marijuana. The citizens were forced to amend the constitution because the Florida legislature refused to pass any law in favor of it. It's taken two years to get just five dispensaries going, and one of them just went out of business, leaving thousands of patients without doctors and out a lot of money. Fortunately, mine is a well-known specialist in his field, and such a compassionate man that he only charges patients without insurance $75 to see him. Of course, this being Florida, all the "doctors" who lost their licenses in other states have flocked here, and they're creating a mess of things. I've yet to find out all the costs, but I know it's going to be steep. If it helps me, I'd sell my two remaining cats to get it (only kidding, Charlotte and Schnellie).

Still and all, I’m trying to maintain my sense of humor. It hasn’t been easy to do so, as my world keeps getting ever more compressed and my energy ever more dissipated. No more Jigidi, no more movies or restaurants, very little reading, no computers except brief exchanges and to pay bills. And I haven’t played duplicate bridge since 2005. I’ve got so many hours of shows recorded on my DVR that I’ll most likely never get to watch them all, and numerous books I’ve ordered throughout the year that I’ll be lucky to read half of them. But the really good news? We’re a mere three weeks away from the 2018 hurricane season. Yippee. Still, it isn't all doom and gloom. I have a couple of Jigidi friends who are tried and true that I chat with, along with my Oregon friends.

If anyone wants to contact me, I’d welcome that, with the caveat that it might take a while to respond. I do much better on the phone so I don't have to sit at my computer.

I miss all of you and wish I could still be a part of my wonderful and kind Jigidi family. Maybe one day I will.

Take care. Gail
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Hello there Gail:
What can I say. Wish I could think of something whitty. Maybe tomorrow.
I've done your puzzles when I first came on Jigidi in 2015. Loved them all and had delightful conversations with you. you taught me so much and I can never repay you the patients and kindness you showed me as a newbee.
You will always be special in my heart.
I know your doing all you can and I as well as many others wish we could just mail you a package of good health, and when you opened it up...whamoo, all your health issues would magically disappear.
Well, I think I hear the patty wagon pulling up outside.....aaahhh yes, and here come the men in their white coats to haul me away....
Much love and many prayers.
Jerri willis

cindycain

Hi Gail...I'm sorry you're going through so much. I sent a message awhile back on one of your puzzles, and I've e-mailed you. Was worried. I don't get on jigidi much anymore. If you're able, please e-mail me sometime...miss hearing from ya...cindy
Oh, and I'm ratless at the moment. I'm been caring for a friends cat for a few mos. now. Not sure how long I'm gonna have him. He's a sweetie. I do want 2 male rat babies eventually though. Take care and hope to hear from you.

canoekaw

I am sorry to read about your medical problems. I use sumatriptan also as I had menstrual migraines and I have migraines triggered by artificial citrus flavors and an over indulgence in chocolate. I can get away with some, I just can not pig out. I hope you can find relief. I use hemp oil (which does not have THC in it) on my skin. It makes it so soft. You can also ingest it for health. I tried a spoon full and did not care for it. Still thinking about you Marilyn

den1

Hi Gail,
For some reason you popped into my mind and I thought I'd see if you were still active on Jigidi. I have just read your comment and I am so sorry that ill health has continued to plague you. I am glad that at least now you have a diagnosis and that means there is something definite for your health professionals to work on.
I do hope that you can remain positive, but I know how debilitating constant pain can be. I do hope these messages of support from your Jigidi friends cheer you somewhat.
When bad health hits someone I am reminded that I am lucky to be an Australian with our healthcare system. No one in this country worries about the monetary side of poor health - it's just not an issue. Our public health system is wonderful . There are many doctors who "bulk bill" and there is no cost attached to a doctor's visit. All cost of treatment in one of our wonderful public hospitals is totally free. There is also the choice of taking private health insurance, that most people can afford, should you want to choose a particular specialist or be treated in a private hospital. Almost all medications are covered by our Prescription Benefits Scheme which makes them very affordable and anyway there is a safety net limit on your cost of medication per calendar year and if you hit that during the year then for the rest of the year your medication is free.
I have read Pammi's comments below and am so sorry she had a misdiagnosis of her husband's condition. These things happen, no matter how good the system is. But when it happens to you, it can be devastating -- as I'm sure it was for Pammi.
Anyway Gail, I hope that knowing some people on the other side of the world have you in their thoughts is of some comfort and I do hope that with a new diagnosis their is a more hopeful future.
I am sending lots of good wishes to you.
Denise

Pammi

Gail, you are naughty for pushing yourself with more typing but thank you for your comforting words. To the best of my knowledge it is certainly possible to sue medical practitioners but considering we are both in our late 70s, the chances are we would be pushing up daisies before it ever hit the courts not to mention the $$$$s it might cost though I know people these days are mostly using Solicitors whose credo is no win no fee. I had noticed that both Eric's physical and mental abilities had slowed down. This week he has started a course of hydrotherapy at our local hospital's rehab department which will be once a week for however long it takes I guess. I can see a definite improvement in his physical demeanor already so this seems to be a step in the right direction. Gail, please do not think you need to respond to my ramblings, just having someone to vent to improves my disposition enormously, selfish tart that I am.
Pam x x

octomom

Mo, THERE YOU ARE! (So sorry for yelling and for using exclamation points.)

I never got your email. I miss you as well. Why don't you give me a call when you have some time? I usually turn my phone off when I sleep, so it's catch as catch can. I'd love to hear about what trouble you've been causing lately.

octomom

Pammi, I know you weren't expecting that. When I spoke to Raini and she read all the comments, I knew I needed to come back on. We all need reassurances, support, acknowledgment and empathy from time to time, and I felt that's what you needed. Have there been any residual issues once he got off the meds? Last question: can you sue the doctors for malpractice who misdiagnosed Eric in Australia?

I saw my neurologist a few hours ago, and signed up for MM. What an expensive proposition it is. So much for the doctor's appointment, then so much for signing up with the state, then so much for the MM, and you have to renew your certification every six months and see the doctor to do so. I'd pay a king's ransom if it helps. While I don't have one of the "qualifying" diseases the state so foolishly lists, he's fairly positive I'll get accepted. He said he's never had a patient turned down, even those that don't have MS (his specialty). Fingers crossed. MM in Oregon is so much easier. Who knows? Maybe I'll be able to spend some time on Jigidi if it helps. I really miss solving puzzles and chatting with friends. Creating them may not be possible, but I have a stash of older ones that can be posted.

Take care, Pammi. If I can't come on, Raini can always read me comments.

sparkles

Hope they can find a remedy to your neuropathy Gail. I had sent you an email awhile back but never heard back so I figured you weren't up to conversations. We'll have to get back in touch. You are missed.

Pammi

Gail, I did mean to add to my comments that I was not expecting you to reply but somehow it did not get said. It is very kind of you to take the time but I do understand how difficult things are for you so no pressure, OK?
Big cuddly hugs to you. Pam x x x x

octomom

Thanks so much for commenting, wjl, Rustycat, jals and glorianna. And thanks, Francine, for thinking of me. I hope all of you are well.

octomom

Hi Pammi, I wasn't planning on coming back here so soon, but when I called Raini just now, she told me about your comment. That's like an Alfred Hitchcock movie. How horrible, and exhausting, an experience it must have been for you and Eric. I can't imagine what it must have felt like, but I'm so glad things worked out in the end. It wouldn't surprise me if you now have doubt about anything physicians tell you. About the ambulance: did they have to do a walkabout to get to your house (kidding)? It's shocking what goes on these days in the medical profession.

And that's how I came to hanging up on Raini and posting here. It's too bad you live so far away. Sitting at my computer is so painful that I can't commit to even an online friendship. I have a tiny pocket-sized pay-by-the-minute cell phone that I think I can make international calls, but the phone is so tiny that it can't be held to my ear for more than a minute or so. It's used mainly for emergency calls to my sister after my GPS tries to drive me into a ditch. What's difficult to figure out is how to put it on speakerphone, as the manual that came with the phone is for a Motorola, yet the phone that came in the same box is a Samsung, with totally different buttons, and neither are manufactured any longer.

It's a good thing I type at 130 words per minute. Stay well, Pammi, and thanks for updating me on your story.

Pammi

Sorry Gail, for some unknown reason I obviously hit the wrong button and sent the message below before I was finished. I do want to wish you all the best and I think of you often and wonder how you are doing. Sending big hugs to you and hoping that life somehow can get easier for you.
I wish only the best for you always.

Pam ♥♥♥♥♥

Pammi

Hi Gail. How wonderful to see you here on Jigidi again and I do understand that it is not at all easy for you but I know your many friends will be thrilled to bits, as am I. Misdiagnoses seem to be the flavour of the month in recent times. You may recall that my husband was diagnosed with Parkinson's 2½ years ago. Well, having been force-fed an unbelievable cocktail of so many drugs (for two years) and having to witness the appalling side effects, from frightening hallucinations to his limbs uncontrollably windmilling on him, we were both at our wit's end. Towards the end of 2017 we were quietly watching TV one night when out of the blue his whole body started convulsing. It was frightening to see and of course the first thing I did was ring for an ambulance. This was about 8.45 pm. and unfortunately, the ambulance did not arrive until midnight. I get that there were no doubt higher priorities for the Ambos but to watch poor Eric suffering convulsions for over three hours almost broke my heart. When they finally arrived he was taken straight off to hospital and they suggested that I leave it until the morning to come to see him. When I got there in the morning, he was still having mild convulsions and I had no hesitation in telling the doctors that, in my mind, all the Parkinson's medications were slowly killing him. Thank God that one doctor in particular listened to me and in his opinion, given that I listed all the dreadful reactions that had plagued him for two years, he believed that Eric did not, and never had had, Parkinson's. With that, all the rogue medications were stopped and he started to get his life back again. I find it unforgivable that this happened to him and it has made both of us now query and research any new medications, along with current ones, before taking them. Sorry Gail but that is a great weight off my shoulders to let it all out.

It is good to know that you now have a compassionate specialist whom you trust. Medicinal cannabis is definitely the coming thing and the first licensed farm in Queensland is now under way and should have the first crop ready for distribution some time this year.

jals

(((hugs)))) Gail.

Sorry to hear all that you've been going through.

glorianna2

Sorry to hear you've been feeling so bad. I sure hope things work out and that you feel better soon.

bookish

Lovely hearing from you Gail; you've been in my thoughts. You're having more problems than any one person should have. Take care. ♥

Lovely puzzle...sending u good vibes.

wjl1015

Just happy to see you back Gail and doing better, or at least heading in the right direction!! I'm sort of in the same boat, waiting on docs to figure out and treat what ails me!! Take care of yourself!! :))

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