don’t worry about relapse

Dear Fairly Odd Mother,

When I read your first post, it sounded like I wrote it. No kidney problems, but when I developed GBS the first time, my husband was worried about loosing his job, my beloved Newfoundland had to be put down due to a severe form of elbow dysplasia at only five years old, I developed a breast mass that they had to remove, but it was so deep it required full surgery, and my son was diagnosed with ADD, even though he was placed in honors classes, he processes info slowly.

The doctor knew the first day that I had GBS but put me in the orthopedic ward and put that my diagnosis was a “headache”. You can imagine the lack of care that the nurses gave me when they thought I was a bleeding heart crying in pain from GBS and they thought I just had a headache even though I couldn’t walk, use my hands, slurred speech, trouble swallowing and breathing and couldn’t keep my eyes closed when trying to sleep. I waited four days until he started treatment and was about to be put on a respirator because the doc was a smart alec who said that GBS goes away completely within a few weeks and he was waiting to see if i was going to heal ,myself without treatment, meanwhile more damage was done with the wait.

Six weeks after my initial onset, I was one of the lucky few ( couldn’t be a lottery huh) to have a relapse. The relapse wasn’t as severe as the first time, but did develop as quickly and motor skills degraded within days. My new neuro ( the hospital doc wouldn’t follow-up with me since he said he didn’t take my insurance ( that was a big mess for hosp treatment – the hosp took my ins and the doc was assigned to me so you would think that he would also acceept the same insurance). Well the new neuro wasn’t sure how much Ivig to give me and asked me how much I wanted!!! I got help from this support group and another neuro at another hosp to determine my doasge. Well, then the hosp ran out of IVig so they had to find a home nursing care that had a supply. It was better to be treated at home, but the nurse was also a saleswoman who got commission, so she told my neuro that it is standard procedure to treat GBS for six months of IV dosages. I discovered that she was on commission after the second month when she sent another nurse to fill in for her and that nurse – besides leaving me home alone to go out to the local store when I was supposed to be monitored for potential risks, told me about the first nurse.

Well, that is a side saga, but having a relapse is very rare and if it were to happen, it could be one isolated relapse and not a sign of chronic CDIP. I have not had a relapse in 12 months and the IViG worked even better for the relapse. It was also a different brand with less side affects of nausea and headahes. By the end of the second day of treatment, my walkig gate was starting to improve, and within two weeks, I was back to where I had been prior to the relapse. So if it were to happen, being savvy to the symptoms takes a lot of fear out of it. It is also like love – you can tell the diffeence between a bad couple of days and a relapse just like knowing when you meet Mr. Right.

I got on this site to take a physical break from spending only 15 minutes of stripping some wall paper. I know the frustration about not getting done in a week what you used to do in a day. I used to have a second p/time job as a church youth director and loved it and felt that I was doing God’s work. I had to resign after GBS since it was too physical and I would spend hours in severe pain afterward. I still hold another p/time job as Christian Ed Director and am so thnakful that I can work from home in at the time of day that i fel most fit ( ha ha – I should rephrase and say in least amount of pain). I pray oftern to god and ask why He won’t restore my health so I can do even more for His ministry and be a bigger help to my lving family. I hate having a teen grow up not being able to feel that his mother is someone he can lean on whenever he needs me and not have to find me in bed and feel that he shouldn’t bother me.

I am also thankful for a wonderful husband who never complains and is tirelessly willing to do anything for me. I get worried about trying to make ends meet. Our plan was that this year when my sone stopped homeschooling, I would go back to work full-time to pay off some bills and start to save for our son’s college. Not only am I incapable of bringing in anythin more than grocery money due to pain and fatigue, but we are trying to sell our boat that we waited for for 15 years and can not make the payments becasue I can not earn a decent income. It sounds petty I know to say “oh we have to sell our boat” , but it gave us so much pleasure together as a family and was what attracted us to each other and for a year and a half, became part of our life to be able to be on the bay and realize how small we are in the scope of God’s creation.
It is frustrating not to be able to carry out plans of work nor to be able to collect disability if you had not been working for several years prior to illness. of course with me, I was homeschooling my son and going in debt with the plan to send him to high school and then go back to the job market – explain that to the government “I was planning on working, but now I can’t.”

Something that has helped my muscle spasms. My girlfriend had a hot tub put in for her Multiple Sclerosis. She keeps the temperature low 94 to 96 degrees since heat is a no no for nerve pain. I felt so much better after being in her tub, that my husband took out a home equity loan to put one in here. Besides the immense help it is for muscle pain, my Pain Managment Doc tells me to kick my legs and move my arms in it for water exercise. I still don’t have the muscle tone I had prior to GBS, but also going in the tub – all year around, I have a dome tent enclosure for it so it is nice in the winter, I also mentally feel better since there is less pain when in the tub and it is “my time” I am on an equal footing with anyone else in the tub unlike other activities where I can not yet do them and feel sad.

I hope your kidney pain is getting better. My Nuero did say that having GBS and getting sick with something else can have more intense pain since our nerves are frazzled. If you feel better with a pain medication, don’t be stoic, if you can feel better and might even feel good enough to smile at your family is better than a bad episode curled up wishing the hours away. I saw that someone posted that they have an occasinal “pain holiday” whre they take stronger pain killers for a day of physical freedom – something that they can look forward to. I actually had some perocet left over from my breast surgery and took them to go skiing for a day – actually it was only twice down the lower half of the mountain, but I DID IT, I DID A PHYSICAL ACTIVITY THAT I USED TO DO BEFORE GBS!! I didn’t even feel awful afterward as I thought I might since the medication lingered long enough to compensate for any residual physical pain.

God Bless and remember that you are not alone, we know what you are going through and if some of the other senior members can be as brave as they are to keep up the good fight, I know we can too.

Laura