The two of you have become my best friends and have given me so much encouragement and strength and the ability to keep my self strong enough inside to get up in the morning and keep fighting.. I am sorry for not being able to post more often, but leaving the Mayo Clinic without a Dx just left me devastated to the core... The initial examination went ok I guess, painful, the test were thorough but also very painful - then had to leave with no Dx or answers - drove all the way home Wed, went straight back to work Thurs and Friday and just slept all day today... The weather here is very damp and cold and has been for about ten days.. I have to go back to Mayo for testing all day Monday 2/4 (Pulmonary testing), then leave and come home and don't go back until March 4th for 3 days of testing - that is when I will finally meet the Neurologist - then leave again (or just stay depending on work) to finally get a Dx on March 10th..... at least that is the plan as it stands.. I never expected to have to wait a month and a half for any answers.. Gina you have been on mind every day - I pray to God you are holding up well and standing strong, I also have been praying for your children and their families - I have just been so worried about you... SWMN - you have just been a rock for me... your pm's have kept me going - especially when I was at the Mayo and was so discouraged after receiving my 'schedule' - you truly were threr when I needed you the most - Thank you.. you certainly were never bothering me - you were giving me strength and hope.. I am so scared and at the same time praying for something they can fix... The pain in spine is increasing on a daily basis, I already take so much meds - it just frightens me when the pain is spreading so quickly throughout my legs, shoulders, hands... I am just so tired of suffering for so long - every morning it is so tough to get out of bed... I feel like am whining and I am sorry for that, but the waiting is killing me and the pain isn't helping.. I just can't fathom not working and giving up my company which I have worked so hard for.. I am grown man and it lay here in tears.. I'm very tired and must sign off, hopefully tomorrow will be a better day. I could have never made this far without all of you on this forum - AL, CindyM, Irma and all you others who given me so much support - I just want to thank all of you for being there for me.. I have so much love and deep deep appreciation for this forum and all of you.. thank you.
Hey Don -
I am so sorry that this process is being drawn out - Mayo may have some other experimental projects for you b/c you are reletively young - I'm sorry you are experiencing so much pain as the muscles begin to decline - but you have a strong mind and heart! you hang in there - You will be so sad at times - but keep doing what you love: If you can "compartmentalize," you will be able to handle the struggles better - My friend John can really do this well and b/c he has continued to work and isolate his thoughts from the ALS all the time, he has done a great job in his fight against this Nasty disease - I only hope you - and john continue to fight and work as long as you love what you do - you will find respite from the disease.
God bless you and all the PALS out there... prayers and hugs to you all
Don, as the song goes "Thier are angels among us" AND i truly believe that you are one of them!I feel so fortunate to be a part of your life and struggles and you are never very far from my mind or heart.You have given so much love and support also to me and others and your courage is so inspireing!One thing i do not understand is why you are having such horrible pain.Even though my husband suffered so from breathing difficulties he never complained of pain at all and most with als says besides the emotional and discomfort of breathing issues for the most part the pain you are describing is either absent or not near the severity.I am praying for you that it will turn out to be something other than als...something that can be treated to restore your health!You are so passionate about your work and i love to see that in anyone as i feel that if in life you have found your passion you have found one of the true meanings of life........prayers and hugs for you .....Gina
Hi Don, hi! I just read your post. I have been gone all day. Went to see my sis's husband, he is a pretty sick man. I spent the day with them, and just got back.
Don, you have been, and will be in my prayers. God bless!
Well, today was definitely a better day.. I think the initial shock of leaving the Mayo w/o a Dx and having to wait 2 months - is beginning to wear off.. It definitely seems that the breathing machine is what makes or breaks my day. Last night I was able to sleep most of the night with it on, it just makes such a big difference. I have had such a hard time adjusting to the mask - mostly just the pain it causes on the bridge of my nose, I mean sometimes it wakes me up and it hurts so bad I just can't put it back on! I spoke to the Respiratory people and they suggested putting a pad under the forehead pad - little did I know that there was a forehead pad - it wasn't even touching my forehead! (duh!) She suggesting using a Makeup sponge to help - well I never really got out of bed yesterday so I just used a folded up paper towel and it made the world of a difference - I guess before, the entire weight of the mask and hose was just hanging on the bridge of my nose.. Well today I got the pads and pray they will help even better.. I am trying to be strong and keep a positive face on - hoping it will help my Mom cope and eventually help me feel strong and more positive! :? I just guess it certainly can't hurt to try.. I have missed you all so much.. I head back to work for a full week tomorrow, praying I have the stamina to get thru it.. If nothing else - it is a wonderful distraction from my own issues - and that has to be a positive thing! I was up and out of bed almost all day spending the day with my Mom and even a surprise visit from my neice and Great nephew, he is just 2 yrs and such a wonderful child and just loves rides in my chair too! Again - thank you so much for being here with me through all this and if nothing else - just listening (or I guess reading) my ramblings... Goodnight my friends.
yay, glad to hear from the angelman. I knew you had your appointment at mayo - I am sorry that they could not tell you much. I think its awful that you have to wait so long to go back, and then it is multiple appointments. good luck. glad your mask is working better and you are feeling better with it. sleep is everything.
Hi Irma, I hope that you are well.. AL, it is always great to hear from you. and Thank you kmgy..
Last night I thought it would help to sleep with one of those curved tempurpedic pillows - NEVER again! to boot - I had tightened the straps way to tight! I woke up with a 1/4 inch dent along the back of my head, just below the 'bulb' - it is still there 14 hours later! All day it felt like I had vice around my head - Has anyone else ever had such an experience? I take alot of pain meds and it is still very painful to just lightly touch the back of my head... I'm not sure if I can bear to wear it tonight... Any input or suggestions would be greatly appreciated.
Otherwise it has just been a long day - 11 hours at work (closing the year, trying to avoid filing for an extension..). I pray to God that tonight will go smoothly, my head is just to sore to wear that mask again - the dent is just too deep and dark red.. I jsut never imagined that type of pillow would cause such awful pain, of course it doesn't help that I don't move an inch in my sleep either - am I alone in this? Sorry to be so negative, it has just been a long tough day... Goodnight all.
Have you thought about taking about two weeks off of work. I sound like you, very hard working and dedicated. I know it seems you could never do that, but i did it....two weeks, no contact, no work...just relaxed.
I was suprised at how much i was able to recharge my batteries.
Only you know what is ultimately best - but I do know that if you go without your mask you will feel like [email protected]#$ tomorrow - the lack of O2 will no doubt, take away from the recovery that your body is trying to get while sleeping -
Do what you can to get comfortable - but dont cut off your head pain to spite your breath - if you know what i mean - may be you could lay differently... I just get scared for you when you say you will go w/o the machine...
I have not used the BiPap the last 2 nights... it has really taken it's toll on me. There is still a 3inch wide by half inch welt on the back of my head that has hurt awful - it has been three days.. tomorrow morn I see my Dr(Gp). I have used many ice packs but they don't seem to helping.. I will take extra meds and try to stay up late and will try to wear the BiPap - I just can't get over the difference w/o it.. Work is just nuts and stressful - year end and financial worries, it just so demanding - there is no chance of taking time off any time soon.. I am taking time to go to the Mayo as it is.. I leave Sunday again for one day of testing on Monday and come back again - travelling is not easy to say the least. I pray to God I can at least get a few hours w/BiPap on - that welt is just killing me though.. it is also still red and warm to the touch... we'll see what the doc says. I'm so glad you all are here for me - I have been so down lately and feel weaker everyday, actually just really tired.. You all are so kind and so supportive and I just really need you now - I feel like I sliding down hill and can't just can't seem to stop - I guess to be truthful - I am frightened. Having a hard time typing, so will call it a night. Good night my precious friends.
Don ,please dont go without the bi-pap it is crucial right now that you wear it.I am praying so hard for you ....please dont let the stress and demands of your work come before your health.!I am so sorry that you are having such problems ajusting to the mask ...this welt on the back of your head could be another piece of the puzzle....an allergic reaction or just that the mask dosnt fit properly i dont know!Hang in thier and we will all be pulling for you.....you have allready been through so much it is heartbreaking to even read your posts now this problem has become so rediculously out of hand i cannot believe it......prayers your way ....Gina