Aa
Checking in
Hi, everyone! I have missed you all and think about you all often. I have just had so much going on and I am still having cog issues. I can't seem to retain what I read. So trying to reply to a post proves very frustrating to me.
I have tried SEVERAL times to write a checking in email to let you all know what is going on with me. I write my typical longwinded message, which takes me forever and a day to try to accomplish, and just before I am finished, medhelp gobbles it up and it is gone. :(
So, I am sending a short and sweet message. Well, I am going to try to anyways!
I am in AZ now. My body is asking me who's idea it was to move to 110 temperatures!! Needless to say, the heat is kicking my butt! But, our house is absolutely beautiful! I swear it was built just for us. I have a huge walk in shower soon more falls or fear of falls! All of my mobility aids fit in my room with lots of extra space and I have a walk or wheel in closet. Huge yard for bbq's and for the dogs to romp and play in. I really cannot believe how perfect this house is for us. :)
I have been busy trying to line up new doctors, making sure to change addresses without forgetting anyone important. Hooking up with services and all. No one will let me help with moving anything or picking up anything, which I shouldn't be doing anyway. It is so hard not to pitch in and do what I can.
And YES! The Baclofen pump was a very good decision! While I still have quite a bit of spasticity/spasms going on, it is also taking some of it away...so far. And the best thing is that I AM WALKING! No marathons, of course, and I couldn't even walk around the block yet. But, there is definitely improvement and for that I am thankful. Any and all time out of the chair is a good thing!
I have found a primary care doctor who is only 15 minutes away and he seems to be a good pick. I have seen him once to meet him, get some refilled prescriptions lined up and to have him check my edema. My feet are so swollen. My hands, too. He felt, like me, that it could be from the Baclofen so he gave me a 5 day dose of water pills to get me through until my first appointment with my ITB therapy team. He also had some blood work done to check liver and kidney function.
Yesterday I had my appointment with the FNP who will be in charge of my ITB therapy. I really, really like her. I asked her opinion on any neurologists. She advised me to go into Phoenix for that, which is what I had originally thought to do when i was searching before I moved. She told me I should go to Barrows, which is exactly what I thought. She felt that with my health issues being outside the box, I would get neuros who would love to take on my mysterious goings-on. lol
She increased my Baclofen in my pump and tweaked my oral drugs a bit. My blood pressure was rather low. She believes this could play a role in why I am having narcolepsy type issues. She is trying to get me on Nuvigil, too. Insurance denied it so we appealed it. We should have an answer in the next couple of days.
She also wants me to be admitted into the rehab hospital for a 2 week stay. After discussing it with my mom, we decided it would be a good thing...so I will be admitted on Sunday. While there I will have extensive physical therapy, my Baclofen pump will get to the dosage it needs to be, I will be weaned off the oral muscle relaxers and Oxi's and Percocets. I was on 2 antidepressants, she took me off one and started me on wellbuterin (sp?) and I am going to try to quit smoking.
Oh yeah, and guess what? I am now vitamin D deficient. I have been tested for it off and on over the last 7 years and have always been fine...until now. My level was 17. So, I am now on something for it, but I cannot remember the name of it. I will have to get it and post about it later for opinions. :)
So, I think I got everything here. I hope so cause i want to post this before the medhelp ghost swipes it from me again! lol Oh, I will have Internet access while in the hospital so I may try to poke my head in and say hi.
Hugs to all of you...stay cool and stress free!
Arizona Addi
Addi, reading this news brought tears to my eyes.
I know you have a lot of hard work, pain and emotional adjustments still ahead. Always, it seems just when we accept our limitation a new hurdle that looks too high to clear will pop up before us. Your successes and challenges have me on a see-saw of reactions but that's not what turned on the water.
These tears are the same type that flowed when my sister let me know her chemotherapy was controling her cancer. She saw new possibilities for her future. These tears, for my sister and now for you, are a joyful response to the sharing of renewed hope. I hear new hope in your words and know it will carry you through these days of intense therapy.
I am so very glad there is a person rampaging for you instead of against you now. May many others fall into line behind her.
Mary
PS-- Yeah, we all think we wake up easy until we find out how many times we didn't even know someone was begging our eyelids to flutter open!
I know you have a lot of hard work, pain and emotional adjustments still ahead. Always, it seems just when we accept our limitation a new hurdle that looks too high to clear will pop up before us. Your successes and challenges have me on a see-saw of reactions but that's not what turned on the water.
These tears are the same type that flowed when my sister let me know her chemotherapy was controling her cancer. She saw new possibilities for her future. These tears, for my sister and now for you, are a joyful response to the sharing of renewed hope. I hear new hope in your words and know it will carry you through these days of intense therapy.
I am so very glad there is a person rampaging for you instead of against you now. May many others fall into line behind her.
Mary
PS-- Yeah, we all think we wake up easy until we find out how many times we didn't even know someone was begging our eyelids to flutter open!
I am glad you are getting such good care. That makes me very happy. I would never think of you as a malinger. Just the opposite. Many people misunderstand a Neuropsyche evaluation. They had neat TV show on the brain the other day and how these tests show certain brain conditions. It was amazing.
Hang in there.
Alex
Hang in there.
Alex
I am sorry that it took me so long to get back to you all. I am in the hospital now. I have never been in a rehab hospital before, but I have a feeling that this would be classified as one of the better ones! Everyone is so very nice here and really treat their patients well. It is rather refreshing. I have a team of specialists working with me and they all meet every morning to discuss and coordinate my care and goals. I have a case manager who is my go to person for anything and everything. I have met a few of the other patients here, too.
There was a screw up with my drugs when I got here so I wasn't getting some of my regular drugs and absolutely no pain meds. I went for about 24 hours without any and started getting worsening of my tremors, muscle spasms and twitches, nerve pain, wheezing, and pain. When my ITB therapist got here Monday afternoon, she was very upset that this was happening and went on a slight rampage. All of a sudden all these different kinds of therapists/doctors began visiting me and thi gs started happening. Boy, remind me never to get on her bad side! Lol!
Physical therapy was hard. I had a total of three hours yesterday of it, split into two sessions. I kinda broke down during one of them as the realization of just how much I had lost due to being ed and wheelchair bound for several months. But I still see the light and will work my hardest to do what they want me to do.
I had my phone appointment for the results of my neuropsych exam yesterday, too. There was such relief for me to learn that I am not crazy! Lol! The first thing she went over with me is that I absolutely do not have malingering. I knew that but now I have paperwork to show and confirm it with any of my future doctors. I so want to send a copy of my report to the two neurologists who labeled me with it, telling me it is all in my head and to pull my boot straps up. She also said she did not see any signs of depression, but she did see some anxiety. But this seemed only to revolve around my symptoms and frustrations of not getting the care i needed. I had slight deficits in the memory department and regarding retaining info. She is going to fax her 25 page report to my fax machine at home and my mom will bring it to me today sometime. I do know that my doctors and therapists are waiting for a copy of it so as to use the results within my health care while here at the hospital. Anyway, the exam was very validating for me and I am so glad that I pursued having it done.
There is some concern with a new problem i seem to be having. There have been two incidences of the nurses, doctors not being able to wake me from sleep. Even with shaking me, yelling my name and even vigorously rubbing my chest. I normally am easy to wake.
Mary, we touched on this when you called me the other day....there has been talk of an MS diagnosis for me, with surprised reactions that I hadn't already been diagnosed with it already. Narcolepsy has been said a few times, too.
Thank you all for being so very supportive of me and believing in me. I credit my wonderful forum family with keeping me on track and pushing me down the right road when I found myself at a fork. I would not be where I am today without the help, guidance and support of you all, no doubt. Thank you from the bottom of my heart.
love and hugs,
Addi (used the copy and paste method!)
Hey Addi, so very glad to see you back, and excited for you that the move is over and that you feel it was the right thing to do. Hope you have air conditioning in your new home, I could not stand the heat, that is for sure.
So glad also that your pump is working, that is the best news yet that you are able to be out of your chair, way to go !!!
Hope your rehab goes well, and we will try and check in too,
Take care my friend,
*hugs*
Candy
So glad also that your pump is working, that is the best news yet that you are able to be out of your chair, way to go !!!
Hope your rehab goes well, and we will try and check in too,
Take care my friend,
*hugs*
Candy
Addi,
so glad you checked in. the house sounds awesome. seems you are setting things up well with drs and all. mostly its just good to hear from you.
Raz
so glad you checked in. the house sounds awesome. seems you are setting things up well with drs and all. mostly its just good to hear from you.
Raz
Hi Addi- it is nice to hear from you again!
It is awesome that the house is just what you need. The dry heat there in AZ is a little better than humid heat and makes AC feel better I think.
Also I hope you can quit smoking. It is HARD!!! I smoked in my younger years and one day went cold turkey (my husband did the same a week later). I didn't want to be a slave anymore :D
I thought I would lose my mind for about 3 weeks and then it became easier. The hardest part was the habit...make a phone call, have a cig. Eat dinner, have a cig. Drive the car, have a cig...etc. So everything I did triggered the habit. YOU CAN DO IT!!
I hope you keep posting and let us know how you are!
It is awesome that the house is just what you need. The dry heat there in AZ is a little better than humid heat and makes AC feel better I think.
Also I hope you can quit smoking. It is HARD!!! I smoked in my younger years and one day went cold turkey (my husband did the same a week later). I didn't want to be a slave anymore :D
I thought I would lose my mind for about 3 weeks and then it became easier. The hardest part was the habit...make a phone call, have a cig. Eat dinner, have a cig. Drive the car, have a cig...etc. So everything I did triggered the habit. YOU CAN DO IT!!
I hope you keep posting and let us know how you are!
Sounds like things are moving along. I am glad about the walking. Glad to hear from you. I miss you. Polly and Grady give puppy kisses.
Alex
Alex
My heart is smiling hearing the good news. This was a difficult move, but a necessary one as you are finding out.
You are putting yourself on a good path for not only getting back on your feet again, but also finding out what is really going on in that mysterious body of yours.
In-patient rehab was an excellent suggestion and I'm so, so happy you decided to go through with it. The 3 hours a day you spend doing PT and OT may not seem like "intensive therapy" but trust me IT IS! I have had to be inpatient rehab 2 times now and each time I learned more and morea about how to take care of myself. I know this will happen for you as well.
So glad to hear the baclofen pump is working and also that other drugs will be tapered off. Sometimes we take so much stuff that is interracting that we don't know what is treating the symptom or causing new ones.
Take advantage of your time in rehab to learn a lot, work out a lot, and get comfortable with teh physiatrist who will be your best advocate while you are there. They love having patients who are highly motivated as we are the ones that make it back home and back to as normal a life as is possible. Be well and keep us updated while you are there if you have the opportunity.
Huge Hugs!!
Julie (Sarahsmom)
P.S. My daughter lives in Tucson. She hates the 110-degree weather too, but loves the desert. :)
You are putting yourself on a good path for not only getting back on your feet again, but also finding out what is really going on in that mysterious body of yours.
In-patient rehab was an excellent suggestion and I'm so, so happy you decided to go through with it. The 3 hours a day you spend doing PT and OT may not seem like "intensive therapy" but trust me IT IS! I have had to be inpatient rehab 2 times now and each time I learned more and morea about how to take care of myself. I know this will happen for you as well.
So glad to hear the baclofen pump is working and also that other drugs will be tapered off. Sometimes we take so much stuff that is interracting that we don't know what is treating the symptom or causing new ones.
Take advantage of your time in rehab to learn a lot, work out a lot, and get comfortable with teh physiatrist who will be your best advocate while you are there. They love having patients who are highly motivated as we are the ones that make it back home and back to as normal a life as is possible. Be well and keep us updated while you are there if you have the opportunity.
Huge Hugs!!
Julie (Sarahsmom)
P.S. My daughter lives in Tucson. She hates the 110-degree weather too, but loves the desert. :)
Addi girl! I was about to send out an APB for you. But of course I knew you were moving long distance, had family and other issues to deal with, and especially you were learning to cope with the pump. That's a huge amount for anyone!
I did wonder often how you were doing, and now am so glad to hear things are going well. I agree with the others that that rehab opportunity is not one to be passed up. It's so good you've connected up with savvy medical help right away.
After that, back to that lovely house with the perfect bedroom and bath. How wonderful.
Take that computer to the hosp with you, and please fill us in when you have time and energy.
ess
I did wonder often how you were doing, and now am so glad to hear things are going well. I agree with the others that that rehab opportunity is not one to be passed up. It's so good you've connected up with savvy medical help right away.
After that, back to that lovely house with the perfect bedroom and bath. How wonderful.
Take that computer to the hosp with you, and please fill us in when you have time and energy.
ess
Hey Addi, all is sounding good with you and the move. As we discussed before. getting that baclofen pump really can be life changing and I'm so happy it is working for you.
The new house, doctor and attitude all sound great.
A tip for when you are writing something long for here - do it in another program and then copy and paste it into a thread. It saves the frustration of losing a masterpiece to the MH gobblins.
The rehab center sounds perfect to get you to the next point - you doctor sounds like a real gem to suggest it for you.
stay in touch,
Lulu
PS good luck to all the smokers wanting to quit - it's tough but you can do this.
The new house, doctor and attitude all sound great.
A tip for when you are writing something long for here - do it in another program and then copy and paste it into a thread. It saves the frustration of losing a masterpiece to the MH gobblins.
The rehab center sounds perfect to get you to the next point - you doctor sounds like a real gem to suggest it for you.
stay in touch,
Lulu
PS good luck to all the smokers wanting to quit - it's tough but you can do this.
hey Addi
I am so glad to hear from you you have been missed on this forum. Glad to hear that you are making progress and it sounds like you are in good hands from the doctors. your 2 week stay in rehab should be good for you tweek the meds and get you up and walking more. You should ask for the nicotine patch while your there and maybe come out a non smoker. I am going to try to quit this week and its going to be hard but I am ready to do it. Please keep us updated when you can
Kat
I am so glad to hear from you you have been missed on this forum. Glad to hear that you are making progress and it sounds like you are in good hands from the doctors. your 2 week stay in rehab should be good for you tweek the meds and get you up and walking more. You should ask for the nicotine patch while your there and maybe come out a non smoker. I am going to try to quit this week and its going to be hard but I am ready to do it. Please keep us updated when you can
Kat
Hi Addi!!
So good to hear from you! It sounds like you are in good hands, medically speaking and a good care plan in place as well.
Walking is fantastic!! Guess you have mixed emotions regarding the safety of the chair versus walking but hopefully they will fade with time and you can be the new and improved Addi.
The rehab hospital sounds like a great medical move as well. Getting therapy, pump adjustments and weaning all in a one stop shop is a good idea. I also know that you will speak up if things are not be done as promised :)
Don't sweat the vitamin D , mine levels run around 6 without Vitamin D replacement every 6 months or so. Write more when you get more settled and after (or during your rehab stay) and let us know how you are doing!!
Miss you!
Hugs,
ren
So good to hear from you! It sounds like you are in good hands, medically speaking and a good care plan in place as well.
Walking is fantastic!! Guess you have mixed emotions regarding the safety of the chair versus walking but hopefully they will fade with time and you can be the new and improved Addi.
The rehab hospital sounds like a great medical move as well. Getting therapy, pump adjustments and weaning all in a one stop shop is a good idea. I also know that you will speak up if things are not be done as promised :)
Don't sweat the vitamin D , mine levels run around 6 without Vitamin D replacement every 6 months or so. Write more when you get more settled and after (or during your rehab stay) and let us know how you are doing!!
Miss you!
Hugs,
ren
Thanks, JJ. :)
We do all think we made the right decision to move here. It just seems like so much happened all at once...between Baylee and her Chiari, the move, me getting the pump. But, things will calm down soon and we all already see great days ahead of us.
I do forget the baby steps. I know I am suppose to be patient and I really am trying to, but it is so hard when I can finally see the exit sign to this huge maze I found myself in with my health. Baylee and my mom are constantly on me, reminding me.
I do know what you mean about the new and improved me. I know I will never be the "old" me and i did mourn that and moved on. It will be interesting at least to see what the new me will be. I am sure I will be happy with it. :)
Thanks again and I hope all is well for you and yours~
Addi
COMMUNITY LEADER
Hey Addi,
I'm so glad you popped in, i've been wondering about you and yours a lot. Wow it sounds so good, i do hope it continues to be positive and the new neuro you find is THE ONE!
Dont forget to take baby steps towards the golden prize, rehab should help you work out the new and improving you lol i'm sure you get what i mean. Keep us updated please, good or bad its always wonderful to hear from you.
HUGS..........JJ
I'm so glad you popped in, i've been wondering about you and yours a lot. Wow it sounds so good, i do hope it continues to be positive and the new neuro you find is THE ONE!
Dont forget to take baby steps towards the golden prize, rehab should help you work out the new and improving you lol i'm sure you get what i mean. Keep us updated please, good or bad its always wonderful to hear from you.
HUGS..........JJ
I knew I was forgetting something.
I did get my neuropsych exam done before I moved. I have a phone consult Monday for my results. I am very interested in how it all went.
When I am in the hospital, towards the end of my stay I think, I may get another exam done. It will be interested to see how the drugs I take effect my mind, ya know?
Addi
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