Frustrated, and don’t know where to turn
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May 8, 2006 at 12:35 am
Hello eveyone,
I found my way back, but it was tricky. So happy to see the board up and running. I also hope they will break the boards down to GBS and CIDP and all the others that were here.
I have been very frustrated with what is happening with my health. I am still receiving no treatment at this point. (I had IVIG- stopped due to reactions, prednisone- stopped due to no response. Doc refuses to do PP, says because of the types of reactions I had to the IVIG that I am not a good canidate.)
He has talked about Imuran, but does not want to start until I an near wheelchair point.
The rehab doc released me until I am in a chair saying he can do no more. Says my upper legs are weaker then the lower, he can brace the lower legs, but not the top. Told me basically to keep strength in my arms so that I will beabe to transfer myself once I am in the chair. He already told me it will be a powerchair as my arms are to weak to wheel myself.
I have tremedous pain in my legs, so the neuro sent me to an ortho doc. He said I have contractures in my legs. He also ordered an MRI and it is normal accept that I have fluid on my knees, and he does not know why. Says he is sorry, there is nothing he can do for me.
The neuro ordered a CPK to see if I have muscle destruction going on. Results are still pending til I see him next week, or the week after, I forget. He did say we may need to start the imuran sooner then planned.
I am also having the same feelings as my knees in my hips, and now my shoulders. I can feel me loosing strength daily, and my muscles hurt so badly.
I am on Lyrica 75 mg three times a day, and percocet 7.5 4 times a day.
I feel like I have no hope, the docs seem to be giving up on me. I have had to get a shower chair, a seat riser for my commode, and a stool to sit on while I prepare my meals and do my dishes. I can’t walk far, and when I try, I pay dearly for it.
I have never remitted, so am thinking I have the progressive form, but don’t have that confirmed. I trust my doc that he is doing what he feels is the best, but am getting discouraged too.
I almost feel like they are prepping me for a life in a wheelchair, and are giving up keeping me walking.
I don’t work, and my sisters and mom are coming to handle the house chores and changing my bedsheets as I am not able.
Fixing meals is becoming so hard to do as well. I don’t have a stove, but use counter appliances and my grasp was not as good as I thought the other night, and the oven was falling off the counter, the food dish sliding off that, and the shelve coming out. It was 450 degrees and it was so hard to manage to get it back up on the counter without burning myself, and without letting it all drop to the floor. Not sure if that would have caused a fire, but sure seems like it would.
I made an appointment with the eye doc as my vision is decreasing rapidly. I also made an appointment with the urologist on referrel from my internist. My bladder no longer works right, nor does my bowels, when they work at all.
I have mornings when I can’t hardly get out of the bed. It took me working at it one morning about 15 minutes cause I could not get to the side of the bed to sit up, and I sleep on the side of the bed. I am now wondering if I should get a rail, or something I can use to pull myself out of the bed. I could not even reach the phone and it was right there on the nightstand.
My electrical type jolts has increased alot lately, that is why we raised the dose on the lyrica. The burning pain as well.
I also am not able to get up off the floor. I have to crawl to something sturdy, but not to high, to try to push and pull myself up. The pain is unbearable and the muscles just won’t work.
Am sure there is more that I can’t think of at the moment, oh, I am sleeping and so tired all the time too.
Am hoping anyone can tell me if they have had a similar experience and what you did for that.
Thank you for any and all advice.
Blu
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May 8, 2006 at 1:24 pm
Dear Blu,
Unfortunately I cant give you any help or advice. I just want you to know that you are in my thoughts and prayers. Do you know if there are any organisations in your area, like Meals on Wheels, that can maybe help you out with cooked food, even if it is once a week. Maybe your mom or sisters can try and find an organisation that can help out every now and then. I know the suggestion wont help in any way with how you are feeling, just hoping to make your life a little more bareable. Do you feel the rehab doc is doing ANYTHING to help you? Glad to hear that you made an appointment with the urologist, because the added problems with bladder and bowl is not what you need right now. 😮
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May 8, 2006 at 3:42 pm
hi blu,
although your doc may have a valid reason, i don’t see how a reaction to ivig negates a try at pp. pls post his reasonings here on this thread when you find out. thx. were you ever given neurontin &/or amitriptiline? some pain meds produce no results & must be switched. also, if you have been on lyrica a while, their paperwork associates it w a possibility of getting gbs. take care. be well.
gene gbs 8-99
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May 11, 2006 at 12:07 am
Thank you both so much for your responses. I have been making the rounds at the docs everyday this week and again tomorrow, so have not had time to get back here.
Ali, thank you for the suggestion of the meals on wheels. My mom said she would check into that for me since she has a lady friend that works there. I also gave my mom a freezer container with dividers, like a plate, but that way she did not need to worry about leaving her dishes here. She sends things on paper plates sometimes, and this would work better for me, and save her a penny or two.
Gene, I have been on neurontin before with bad side effects, that I could not handle, can’t remember now, what they were. (Memory is getting poor) I have taken elavil many years ago and it worked well for my depression. But that was before CIDP.
The doc had me on cymbalta, but it did not help all the symptoms, but kept me on it for awhile as it helped the depression. At my neuro’s request, my internist changed it when my depression continued to deepen, and I asked for elavil, but he gave me lexapro. Not sure it is helping yet, but not enough time has passed to know if it is helping either situation.
My understanding on the IVIG is that my blood pressure kept dropping much to low, and apparently that is also a possibility with the PP. So that was my understanding why he won’t try it. I have heard that my lyrica is a pretty low dose, a friend on a pm message mentioned that. (Thank you Sue) And my rehab doc thinks it is to low, so maybe that will help. He raised it once since the Rehab mentioned it, so maybe he will again. I am on 75 mg three times a day.
I took a bad fall two days ago, I have 2 brick steps leading into my house. I was holding the bar, stepping down with my left foot when my right leg gave way. My legs were pretty tangled and if I moved either hand, I would have gone further to land hitting my head on the concrete. I ended up wrapping my head around the pole, to hold me from falling and gradually pulled myself up enough to untangle my legs, and I went out under the bar. I could not fully get up, so that was easier.
I was ok, but hurting here and there. Called the Rehab doc for a prescription for a cane or walker or something. So far, no response. I am upset at that.
I saw the urologist Monday, who, along with the ortho doc is upset about no cane or walker, and he said it is time to demand it. So I plan to do that.
As for the Uro, I found I have a dropped bladder, and I am not emptying fully. I had a ultrasound test on tuesday, and another horrible test today. Not sure what that told him. I have another test schedule for June 9th. He will use versed on me then. Praise God. He seems real positive on what he can help me with in this area, so I feel a bit of hope again. Some of this seems to be natural with age, and some related to the CIDP.
Tomorrow I go back to the neuro to learn the results of rather I also have muscle destruction. He did say we may start the imuran now too, so we shall see.
I need to let him know too that I can’t hardly get my arms around me now, to scratch my back etc, I think I am rapidly loosing range of motion in my shoulders.
I hate this disease. For me it seems to mutate all the time. Never know what I am going to wake up to the next day, accept for pain.
I have a feeling in my gut that I may have more going on here too. When the Breast cancer scare this year, the bladder now. I also have many symptoms of lupus, and he continues to check the ANA, but it continues to be negative. So I don’t know.
Thank you all for your support. I have greatly missed you. The pain and depression keep me off the computer alot now, (Someday I will have a better chair to sit in and can manage more)
Oh, I forgot to mention that my church is discussing building a ramp for my front steps, I don’t know if they intend to do the inside steps, (There are 3 going down into my bedroom) but they are carpeted and don’t hurt me so bad. So I am thrilled about the outside one. I hope they do it before I fall again.
I will let you all know what happens tomorrow. Thanks again. And wonderful to see you all. I see some are still missing. I hope they find there way back here as I did. If the link on the main site worked it would help, but when I click it it says page cannot be found. I had to use the link from the uk site.
Blu
CIDP DX 8-2005
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May 11, 2006 at 7:01 am
Blu…
I am so sorry to see that things are going down hill for you… Expecially with the pain…on top of all the other, you don’t need to contend with that… I do not know much about the drugs that everyone is taking… I took gabapenton (sp…???) for awhile and I think it is generic for neuronton… Do you, or does anyone else know, if the generic may be better than the newer version..??? Sometimes older things are better than newer ones the companies make a bit different because the older drug can be made generic… Having trouble explaining what I mean…there was something about the med described as the “little purple pill” (have no idea what is was for) that was about to go generic, so the drug company did something with the formula so that it would be a little different and hence a “new” drug (under patent laws)… I guess I am just a little suspicious of meds…
Hope you get to feeling better and get some news that will be helpful to your situation… Keep us informed….
Aimee
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May 11, 2006 at 9:25 am
Blu,
I am so sorry for all that you are going trough right now. CIDP is difficult enough, let alone trying to fight it alone. As far as the pain meds, isn’t Lyrica just a newer version of neurontin, now that the patent on neurontin has expired? Gabapentin is the generic & for some reason works better than neurontin did for me, it is also so much cheaper. It does sound like you have the progressive form of CIDP, especially if IVIG & steroids didn’t help much. I had over 40 IVIGs & 17 PP with no real result, also 21 months of 1,00 mg of steroids weekly. None of it did much for me.
Finally my neuro used a more extreme protcol & put me on cytoxan infusions. It did finally arrest the disease in 2003, I began walking again in the summer of 2004 (after 26 months in a powerchair only) & now I use AFOs & one cane. Please do not give up hope as there are still other treatments out there. BTW when I was getting PP my blood pressure did always drop to drastically low levels, but not when I got the IVIG.
Best of luck, Pam -
May 11, 2006 at 10:27 am
Hello Blue,
I am sorry you have to go through all that. My symptoms are not quite as severe yet as yours but it appears that I am headed that way. It’s been a slow downhill journey ever since the first symptoms appeared 5 years ago. A few months ago I was still able to walk short distances with a cane. Now I am using a rollator even around the house. My feet have been totally numb for over a year. Now the numbness is creeping up my legs. The numbness in my fingertips has spread over my entire hand. I am having problems picking up small things.
Just like for you IVIG last year October-December has not helped significantly. I started with a high dose of Prednisone in March 2006 but had to stop after five weeks because I was getting these bad electric jolts all the way up to my chest and lost muscle control in my legs. I have a feeling my neuro has given up on me. She is putting me back on IVIG in a week anyhow.
There are a lot of similarities between us. Because if that I am wondering if your neuro has done additional blood tests to see if you have a CIDP variant like I do. Tests would be electropheresis and another one for antiMAG antibodies, some more I can’t remember off the top of my head, would have to pull out the lab results. It turned out that I have a very high number of IgM antibodies against MAG, a component of the myelin sheath. My symptoms are consistent with that finding: Slow progression, mostly sensory, unresponsive to IVIG, PP or steroids. My neuro did a bone scan and referred me to an oncologist who ruled out malignancies like myeloma.
According to my research the only treatment that might help are Rituxan or Cytoxan (sp?). The latter is chemo with dangerous side effects. Rituxan is not approved for CIDP and very expensive. For right now neither one is an option for me. I understand that the oncologist did not try to get approval for Rituxan because of cost. I am on Medicare and the hospital probably would lose too much money. IVIG already might have been a problem. The charge for one day of IVIG last year was $9000. Medicare reduced it per contract by about 50%.
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May 11, 2006 at 1:04 pm
blu,
you might try topamax & elavil. take care. be well.
gene gbs 8-99
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May 11, 2006 at 3:15 pm
Blu,
Cytoxan is a chemotherapy drug, in fact it is the one most commonly used for breast cancer. It is relatively cheap, my infusions were around $800 a month. After having had PP, IVIG & solumedrol infusions every Friday for 12 weeks (yes, on the same day) I am sure my insurance company was thrilled not to have to pay for those any more.As for the side effects, I was a little tired, but had no nausea at all. It was only a few hours a month at our local hospital. I was told that I would have a 5% chance of leukemia 20 years down the road. I am so glad I took that small risk. It was worth it to get a life back.
Pam -
May 12, 2006 at 1:00 am
Thank you for all the responses.
Norb, I noticed too that we sounded alike in our journey. I believe he did do those studies you mentioned. I asked him about it 2 weeks ago too, and he said yes. So I don’t have that type. But our symptoms are definitely similar. I started with my feet hurting about 6 years ago. Saw a doc the first time for my hands hurting Jan. 05, dx 8-05.
Pam, that is wonderful that the cytoxin worked for you. I will definitely keep that in mind.
My understanding is that Lyrica is the improved version of the neurontin. I mainly know that I can take the lyrica, but not the neurontin.
Gene, thanks for the info on the topamax.
I saw the neuro again this afternoon. We discussed treatment options again. We tossed the idea of plasma pheresis (I brought it up again) and chemo. Anyway, we discussed both at length and I made the decision I wanted to try PP first. So he is going to get that arranged. I guess our hospital does not do it, he said something about having to contact the local red cross who will come to the hospital to do it. Anyway, I told him I also wanted the same surgeon I had for my breast surgery as I felt he was good and he is also a vascular surgeon. He thought that was a good choice.
We also discussed cane verses walker verses powerchair. Cane was ruled out right away as I didn’t feel it was enough, nor did he. We discussed the pros and cons of chair and walker, chair would give me more mobility, and cut down on the pain I currently have, but it is spendy, and my legs may atrophy. But I am not so sure about the walker. When I fell, I was holding onto a pole already and it was alot sturdier then a walker and it didn’t stop me from falling.
I also am not sure I could pull myself up with a walker which I need to do to get up from a chair etc. Right now, I sit at a table and place all my weight on it and push. But could a walker hold the weight? I don’t know. Anyway, I have alot of pros and cons going on as to which one, he seems to be leaning towards the chair, as I am. But am thinking it through and will let him know. I just don’t think I can continue this. It is taking everything I got in me.
He also said no matter the decision, ramps are needed inside and outside.
My CPK was ok, so it is all from the nerves.
I talked to my landlady today about the ok for ramps on the house, and of coarse she agreed to it, she also works at the senior center which has a meals on wheels type program. She asked me if I would be interested, and I gratefully said yes, so she will get that rolling for me.
I feel today gave me hope. Hope in some treatment now, even if it doesn’t work, I will know we tried. Then we can try the chemo. I already picked the onocologist, I used to work for him and if he knows nothing about CIDP he is the kind of doc who will research it. He gave me my housewarming party.(I since sold the house..lol..) I have hope in some sort of mobility aid, I just have to decide which, I really think the chair, I cry alot cause of the pain and it is so hard to walk. Anyway, today was a good day I think.
Thank you all for you help and ideas. I am so grateful to you all.
Blu
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May 12, 2006 at 11:09 am
Blu, there is one difference I did not mention: I don’t have any pain …yet.
If you are considering a walker, you may want to look at rollators, perhaps try one out at a store. I really like mine. I feel pretty secure with it around the house or outdoors. It has a seat that holds 250 lbs, two handbrakes which can lock, a removeable basket. It collapses very easily to store in the car, is easy to maneuver. I even started using it at the kitchen counter to have breakfast since we don’t have chairs high enough.
Since I never paid attention to how I do it, I just tested it to see how easy it is to get up from. First I locked the brakes so it wouldn’t roll away. Then using the handles I pushed myself up without difficulty.
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May 12, 2006 at 5:26 pm
Wow..!!! That looks terrific Norbert… I don’t know about anyone else here, but I ALWAYS grab a shopping cartn if they are available, going into a store, even if I am getting one or two different things… It makes it so much easier to walk holding onto something out in front of me….
I was going to tell Blu that the walkers are probably made of the material they are (aluminum..???) to make them light weight because you have to pick them up to move… I don’t think they would be flimsy and having support on four sides of it would make it much steadier than a cane (I use a hiker’s retractable walking stick)…
Now, after looking at the rollator, I think THAT would be the way to go… If you are like me and have to stand in line sometimes, having something handy to sit on would be fabulous…
Let us know what you decide and how it works for you when you get it…
Aimee
(CIDP dx 2005)P.S. Where DO you get them, Norbert..???
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May 29, 2006 at 4:50 pm
[QUOTE=aimee]Wow..!!! That looks terrific Norbert… I
P.S. Where DO you get them, Norbert..???[/QUOTE]
I still am lost with this forum and what I posted where and when. Accidentally came across this one searching for Medicare and noticed that I never answered. I got my rollatior in a medical supply store. People in the neuro’s office gave me the name and address.I used to grab a shopping card, too. Now with my cool “Ferrari” I don’t need those any more.
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May 29, 2006 at 5:37 pm
[QUOTE]I still am lost with this forum and what I posted where and when. [/QUOTE]
Hi Norb…
I think that the older posts are going into an Archive, but I didn’t think that they could be resurrected from there… I am wondering how you managed to bring this one up again… 🙂
[QUOTE]I used to grab a shopping card, too. Now with my cool “Ferrari” I don’t need those any more.[/QUOTE]
I went back and looked at your “Ferrari” half expecting it to be fire-engine red… 🙂 Thanks for the information… How much would one like that cost..???
Aimee
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May 29, 2006 at 5:56 pm
While the thread is up again, I wanted to ask Blu if she has had the plasma pheresis yet, or if she has a date for when it will happen… I hope everything is going well…
Aimee
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May 29, 2006 at 6:43 pm
[QUOTE=aimee]I went back and looked at your “Ferrari” half expecting it to be fire-engine red… 🙂 Thanks for the information… How much would one like that cost..???
Aimee[/QUOTE]Hi Aimee, I had a choice between blue or burgandy. I was daring and picked the more exciting color, pretty bright, actually.:D This is the medicare approved model and cost $120. Medicare paid 80%. An almost identical -non-medicare – one cost a lot more.
I found this thread doing a search on a keyword. Someone posted earlier that this year medicare rejected his claim for IVIG. I asked for details but don’t know if he answered. I just completed my first round of IVIG for the year and am terribly worried and afraid I will get charged $30,000+.
Couldn’t find the thread about this here nor on UK side.
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May 29, 2006 at 7:52 pm
I knew a bluangel from a few years ago. disappeared from a geology progran IRC. Is that you blu?
Hugs, Juiles -
May 30, 2006 at 10:12 pm
Blu,
I am new to the forums, and I just started reading everyones threads. I just wanted to let you know that my thoughts are with you now. Please, if at anytime you need someone to talk to, I am here. I hope everything is alright.Take care
God bless,
Heather4 year old son,GBS 5/2006
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May 31, 2006 at 11:19 pm
Hi everyone, sorry it has been so long. My dad is in the hospital and may have had a stroke and it has been rough on him. He lives on the west coast so I can’t see him, but I am stressed to the max with worry for him.
I also have been just not feeling well and been in bed 50% of the time if not more.
I took your advice Norb, and I got a rollator. This one is burgandy and the place I went to charged 147.00 for it. But Medicare paid 100%. The gal their told me to becareful not to order a power chair real soon. She also said to have the doc list detailed information on the prescription cause that will help to get them to pay 100% for the chair.
They delivered it yesterday. I have been using it around the house and getting used to it. It does help me alot and in more ways then walking. Like I can set my dinner plate on the seat to take it to the table, something that was hard for me.
I have also done dishes, and cooked while sitting in it, and found that helps me too.
I have not attempted to go outside as I have two very high brick steps. I need a ramp soon. I will try going out, but will not depend on it. I will try to get it down, and use the bar to get me down. Not sure I can do it yet or not.
I have not started PP yet. Everytime I call there seems to be alot of paper work with the red cross. I asked if this is done often and they said no, so that is apparently what is taking so long. I do plan to call them again. If it is that hard, they might as well refer me for the chemo and forget the PP.
ANyway, I like the rollator. I don’t have a camera to take a photo, but I think it is like yours Norb. I can’t see your photo anymore so am going on memory.
Thanks for all your help.
Oh, I don’t think I am the bluangel you are thinking of. I have posted here, a ms and a lupus board, while going through the testing. Otherwise I have another name I use for everything else. Hope you find her.
Blu
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May 31, 2006 at 11:45 pm
Blu, sorry about your dad. Is there any family at all with him? I know from experience how much it means to have at least one person around. I had a heart bypass 8 years ago. There is always the phone to keep in touch.
I do the same with my rollator. I use the seat to transport a glass with liquid or a plate with food, even other items. It makes life so much easier. Mine is burgandy, too.:D
Today I used the Dial-a-Ride the city offers for the first time to shop. $2.50 per trip. I took the rollator. It went really well. I am alone in the house til Friday and can’t drive. My wife is in Denver with our daughter babysitting our granddaughter as usual. Having the rollator gives both of us peace of mind.Take care
I forgot. where in OK do you live? We have a lot of ties to OK.
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June 1, 2006 at 6:52 am
Hi Blu…
Sorry to hear about your dad… It does make one feel helpless to be so far away…
I am glad the rollator is working for you… When we went to Chicago last Christmas I did Google searches trying to find something that would have a seat without being seated all the time… The only thing I kept turning up was a cane that had a folding seat on it… This looks much better… 🙂
What have you heard about building a ramp..??? You mentioned before that your church may be building it for you…
Take care…
Aimee -
June 1, 2006 at 11:28 am
Thank you Norb and Aimee for the well wishes for my dad. I understand that he is doing better, but still have not confirmed what has happened to him. Still in ICU. He does have alot of people around him. My stepmom and 4 of my siblings live out there nearby, plus spouses and friends. I have 6 siblings, 2 are here with me.
Norb, I am near Muskogee, Oklahoma, a small town on the outshirts of it. Oh, I have meant to tell you that I was born in Heidelberg Germany. Unfortunately we moved to the states when I was 3 so I have no memory of it. But my son took a trip to Europe and he videoed tons of Germany for me. Beautiful country.
Aimee, I have not heard more about the ramps. I am flustered as I don’t have the means to build them, not covered by medicare either. My house is on two levels, 3 steps between the levels. Frontroom and kitchen on one level and the bedroom and bath on the lower level. Those 3 steps don’t sound like much but they are very hard to manuver. But I am praying that something will come about from the church or elsewhere to get them. I do have family here, that could help, and they know the need, but so far, no responses. I do have a friend, that if all else fails, her husband will do it. It is just a matter of finding the time as he helps many others as well.
Aimee, I do think a rollator would be better then a cane with a chair, or a regular walker. It is easy to use, feels very sturdy, has the brakes to slow things down, (That gives me great comfort in thinking about ramps) and they also lock. The seat and basket are great features. Now I wont have to carry all the stuff from the market all the way to the back bath, I can set it on the seat and go. Also helps when getting several items out of the fridge.
I am so grateful to have it now.
Blu
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June 3, 2006 at 10:14 am
Blu, Glad your dad is doing better. You really like the rollator. That’s great. I wouldn’t want to do without anymore. Two days ago I signed up for Dial-a Ride in Fort Collins for the times I am alone and want to go somewhere. It costs $2.50 per ride. They pick you up at the house and take you anywhere you want to go. They knew exactly how to fold up the rollator, and back at the house they carry my shopping bags to the door. I finally feel more independent, not so locked up in the house while my wife is in Denver babysitting our granddaughter.
So you are an OKey from Muskogee! We know Muskogee, been there. My mother-in-law lives in Grove, has a house on the lake. When we came back from Thaland in 2004, we stayed with her for almost a year until our tenants moved out of our house in Ft. Collins, CO, last June. Carol, my wife, was born in Stillwater, OK. We lived in Tulsa for 8 years. I worked for Hilti, Carol was teaching German and Science at Wilson middle school. In 89 we moved to Minnesota, quite a contrast. Germany, I miss it sometimes. Heidelberg is a beautiful city. Last time I was in Germany was in 2001 when my younger brother died. Now without any close relatives left, I don’t get to go anymore. 🙁 Too expensive being on social security.
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