Neuro Behcet's Poetry

[TNTim]

All my joints are on fire, both my legs are numb Feet feel like the bones are crushed they are totally done I can't push up off the couch no leg strength at all I have very little balance today try to walk but only fall Arms are like wet noodles worthless and weak Vision is fuzzy can't see what I seek Ears are ringing my energy completely drained Back in such pain my fingers just the same Throat swollen closed hard to eat or drink Brain is inflamed it's difficult to think Getting harder to breath with Upper body now going numb Saliva running down my face I'm sure I look dumb Pinch or hit me I can't feel much at all Can't sleep more than 2 hours I get no rest at all I know you have aches and pains and tough times too Words of encouragement needed not much I can do.....

I was diagnosed with this 6 years ago and it is progressing at an accelerated pace. My family has a hard time realizing how many areas it physically affects, not to mention the emotional toll. I wrote this and wanted to post in case you have people in your life who can't grasp how all encompassing it is. Fell free to share with whom you like and GOD Bless us all........

[sian35]

Really well expressed!

[Colleen6082]

I’m so sorry Tim. That sounds absolutely agonizing and I wish there was something I could do to help. Maybe your rheumatologist can change up your meds to help settle this flare down. God bless you.

[Hidden]

I know what you are going through , I feel like this disease is totally taking over my body , I am on my second anti tnf drug and still the flare ups occur every week . I have been in a flare for over Year and only leave the house for the hospital . I can deal with the pain in a way , but it's the mental impact i find hard to deal with , I have had to give up work , I was a nurse for 22 years . I find because people have never heard of the disease , they cannot believe it can effect us so bad . I pray every day for a cure . Sending out big hugs to everyone with this horrible disease . Keep fighting x

[Dolores81]

I know exactly what your going through, especially the last few weeks has been rough. You've just described how I'm feeling. The struggle is real and no one seems to understand that at times your just not in control. It was put straight to the point. Thank you for sharing.

[Stm252]

Ditto to what everyone is saying. I was just up all night. I feel so awful. So much pain. Fatigue. And now me emotionally I am just wrought. And many expect us to put on a smile and keep going because they have no idea how bad it is. As such...I have to do that now and go to work. Somehow. Thank you for sharing. And giving us the space to honor how bad it is.

[Lovingdragonflies]

So sorry

[FrancisB]

I'm so sorry to hear about the suffering you are experiencing, I believe the mental battle is the hardest part & most important part. I hope you feel better soon.

[sneakyblonde]

TNTim,

IT has been 7 months since your excellent poem.

One I think every doctor treating BEHCET'S and Neuro Behcet's patients should read!

How are you doing today?

I hope much better, that your Doctor found a medication to help you.

I live in California, USA.

I switched doctors and they took me off all PAIN MEDS and Valium at bedtime. They changed my gabapentin and prednisone dosages, without even knowing or ASKING - "WHY ? "

I was taking it.

(I am down to alternating generic TYLENOL and ALEVE for pain all day, which has raised Hell and Havoc with the Chronic, progressive Neuro behcet's.)

I do hope you are feeling better.

IF you need me to find medical studies for treatments, to show your doctor, please let me know.

Studies are small because it is so rare and take time to research. I have taught myself to read at a medical level and evaluate studies.

Feel well,

Cindy